Little Tad Pole, Big Pond

WAHOOOO!

2012-02-16T20:04:00.000-08:00

I had a CF clinic appointment on Monday. It was great! I was actually nervous about being sent home on IVs but I got great news instead! My PFTs were up to 55% from 46% in September! That's my pre-MAC baseline!! *happy dance* Next week I'll have another CT just to confirm that things still look good but at this point there's no reason to think otherwise.

I always do at least 3 tests at clinic and they keep the best one. My first one was 52%. I looked at the computer screen and said "52!? REALLY??" I made the resperatory therapist go back and check my September numbers. Then my next two tests were both 55%. I almost fell off of my chair. It looks like a year and a half of antibiotics has paid off.

My weight is good. I'm eating enough. I should get the results on my blood work next week but that hasn't really changed in years. In the summer I'll get a dexascan to check on my bone density but that hasn't changed in years either. So everything is looking great! This was the best clinic day I've had in a couple of years!

Seizure dos and don'ts!

2012-01-20T14:15:00.000-08:00

Do you know what to do if you witness someone having a seizure? Well here are some tips that I've learned since my epilepsy diagnosis. Keep in mind that I am by no means a specialist nor do I play one on the internet. This is information I have been given by my doctors and from The Cleveland Clinic's Guide to Epilepsy.

Seizures are pretty common. Chances are that you will witness one in your lifetime. You should know what to do if that happens!

DO!

Try to stay calm!
Put something soft under the person's head to cushion in. A pillow is ideal but in a pinch you can use a jacket, blanket, or something similar.
Move anything near by that the person could injure themselves on.
If you can, roll the person onto their side in case the vomit.
If this is a first seizure for the person or you don't know call 911.
If this is not a first seizure you may not need to call 911 unless it lasts more than 5 minutes, the person stops breathing, or they are injured during the seizure.

DON'T

Never try to restrain the person! You could accidentally injure them or yourself.
Never try to put something in their mouth so they won't bite or swallow their tongue. You're more likely to get bitten than prevent an injury to the person seizing.
Don't leave the person alone. After they come around from the seizure they might seem totally aware but they could still be post ictal. This is a period of time after a seizure but before a person is completely aware. My post ictal period lasts for the entire day after a seizure! I act normally but will have little to no memory of the day later.

There are many different types of seizures. They can range from someone just staring off into space and being unresponsive for a few minutes to the full blown tonic clonic (formerly known as grand mal) seizure that you typically see on TV shows and in movies. If you have a body part that just won't stop moving on its own, it could be a seizure and you need to get looked at.

I hope that this information is useful if you ever see someone seizing. It is a very scary thing to see but you can make it easier if you know what to do!

Update.

2012-01-20T14:06:00.000-08:00

Hello out there in blogger land! I hope everyone is doing well in the new year.

First, I appologize for not blogging more, I know I promised I would a while back. The fact is that not much has gone on. I've been doing well, had a slight cold last month but it was no big deal. I've been snow boarding a couple of times. Last time I did really well with the altitude! YAY!

I'm still on treatment for MAC, its coming up on a year. I have a CF clinic appointment next month where I'll give them a sputum sample to culture. Cross your fingers that its still clean for MAC.

I have been seizure free for exactly 13 months! That is amazing! I know that I could still seize at any time, but the fact that its been so long is very encouraging. I could legally drive now if I wanted to (but I don't). I still try not to use the oven when no one is around and follow other precautions to keep myself as safe as possible in case I do seize.

Speaking of seizures, I have been meaning to do a blog about the dos and don'ts if you witness someone having a seizure. There are a lot of myths out there!

Ribbit!

Thirty!

2011-10-03T14:26:00.000-07:00

My birthday was last week. I'm 30 now! I don't know a whole lot of women that we ok turning 30 let alone excited about it. But I am. 30 is huge for me. My CF seems to be pretty moderate. But when I was born the odds were that I wouldn't even get out of high school. So much for that!

The treatment of CF ha come a long way, and I give full credit to all the people out there who have done that. But part of it also that I'm not done here yet. I love life. I have an amazing family, a wonderful guy, and the best friends a person could ever hope for. They are the reason I keep at it, no matter how hard it gets or how crappy I feel. They need me, but I need them even more. Thank you all.

The best birthday present I could ever have is just having another birthday.

It all comes at once.

2011-08-09T22:39:00.001-07:00

Why is it that I can go for months without setting foot in my hospital (other than to pick up meds) and other times I go months where I have at LEAST one appointment a week, maybe more.

So lately my pain has been REALLY out of hand. I got the stuff done to get seen at the pain clinic at UW again. There was some drama the day before the appointment that I just don't want to go into because I was really upset. Anyway, the doc flat out told me that she doesn't know if there is anything she can do for me. Are you fucking for real!? She's a PAIN SPECIALIST....supposedly. Of course she wants to consult with all of my other docs, which I expected. I go back to see her tomorrow to see if she came up with a plan. In between these appointments she referred me to a psych. Of course she told me it was because she wants to see if the shrink has any ideas for meds that might help me. But of course its because she fucking thinks I'm drug seeking. If she wanted ideas she could review my history with the shrink on her own. Whatever, I'll play ball for the time being. I do have a lead on another pain clinic in the area though.

I've been having a lot of "I think I might puke" so I went in for blood work on my liver. The ethambutol I take for the MAC can cause liver issues. I also got a scrip for zofran, oh how I love thee. The blood work came back and one of the levels was elevated but of course when I asked what it measures exactly the dumbass nurse couldn't be bothered to explain it to me. And I was out and didn't have a pen with me to write down which test it was so I could look it up myself. She's so annoying.

I went to my primary doc's office about pelvic pain. I swear if I still had my appendix I would have been in the ER a long time ago thinking I was going to die soon. The doc dug around in my lady bits (for the THIRD time this year!!!) but since she didn't feel anything out of the ordinary so she didn't order an ultrasound or refer me to GYN. My head hurts. Normally she's really cool and listens to me. I'll ask my CF doc to do the refering. Or maybe even the pain doc tomorrow.

Anyway, that's about it for me. I hope everyone out there is doing great!

Chronic Chicks

2011-07-20T13:38:00.001-07:00

What do you get when you have 3 women, 1 double lung transplant, 1 cancer warrior, 2 CFers, 1 epileptic, 3 ports, 2 lawyers, and 1 cosmetologist wanna be? You get me Piper and Lisa hanging out together!

My cyster Piper, who is from NYC, was out here for a wedding and she was kind enough to make time to get together with me and our friend Lisa. I have blogged about both of them before. Piper had her transplant a little over a year ago, Lisa is the wife of a CFer who passed last year and now she is fighting breast cancer (and looking wonderful while doing it!).

So we all got together lunch. We updated each other on our current medical statuses (stati?), compared ports, told hospital horror stories, told good hospital stories. Of course we also talked about stuff not related to our medical issues, pets, family, significant others, and plans.

Lisa had to go to an appointment in the afternoon which left Piper and I to do whatever. We drove through Seattle a little bit and headed down to Pike's Place Market.

You can't come to Seattle and not go to the market, its a law. We didn't explore the inside of the market because its always crowded and Piper is, of course, immuno suppressed. We did see the very first Starbucks though. I don't know why that's such a big deal but everyone has to see it. There's always a line out to the street. A little further down we came accross an ice cream shop and Piper treated me to a sundae.

As we were walking back up the hill to the car Piper commented that I seemed like I was handling it well, not coughing much. Which was true, I feel good since starting my MAC treatment, but I couldn't help envy Piper because when she got to the top of the hill she could complete a full sentence without taking a breath, or three. When I see my friend who are post tx and doing well it just confirms for me that when my turn comes up I want it. Sure, there are no guarentees but I at least want the chance to feel good. I never feel really good these days. There is pain, shortness of breath, stomach aches, naseau, piles of pills that don't seem to do much of anything, treatments that are unpleasant at the least and very painful at the worst. Its getting harder and harder to maintain my baseline. I know its only a matter of time before I start to decline and things will get even more complicated. So seeing Piper inspired me. I'm going to keep doing what I have to in order to keep these tired lungs as long as I can, but some day I hope to have fresh ones.

Anyway, where was I? I had to stop by my hospital to get my weekly amikacin so Piper said she would take me there. So she even got a glimpse of my hospital while she was in town! While we sat waiting for my number to be called I pointed out staff that I recognize and Piper noticed a CFer. I got to thinking about it later and I realized that I have been admitted at the same time as that CF patient. I don't know who she is though, she didn't seem like she wanted to talk when were on the floor together.

After the pharmacy it was time for me to head home. Piper dropped me off at the bus stop and I got a picture of us before we parted ways. I am SO glad I got to meet her in person finally. She has been a big source of inspiration, friendship, understanding, and support me. For all of that I thank her very much and I hope that she has benefitted from our friendship half as much as I have.

Rough week.

2011-07-01T13:21:00.000-07:00

What a week this has been. Monday was pretty uneventful. On Tuesday evening I had a fundraiser at a local burger joint. We raised $250 for the CF Foundation.

On Wednesday I had an appointment with my diabetes nurse practitioner. I've been struggling with my blood sugar. Abx make me run low, and finally my NP acknowledged this. She started me on a long acting insulin which should reduce my need for the short acting insulin that is making my sugar bottom out. This means I should be able to eat like I'm supposed to between breakfast and dinner and not have to stress about my blood sugar so much. After that I went to have some blood work done and pick up meds.

The lab screwed up some of the blood work. They sent it to be spun when it wasn't supposed to be. So while I was waiting at the pharmacy I was paged back to the lab. The redrew the screwed up tubes. So now I have matching hemotomas on my arms.

Then yesterday....fucking yesterday. I was scheduled to have my port flushed but Missy kitty wasn't doing well. She has been sick for a while but yesterday she got worse. We knew that she didn't have much time left so we decided to get her put to sleep. I called my nurse and left a message telling her I would have to reschedule then we went to the vet.

Missy kitty was pretty old, probably in her teens. We didn't want to watch her get worse or have her suffer. I really feel like we did the right thing for her, but just having to make that choice is hard not to mention losing your friend. J and I both got to say our goodbyes to her. When I held her for the last time she purred. She hadn't purred much in the previous few days. J and my mom both said that she was telling me she loved me. We were not with her when they did it. I was there when my dog died and I was hysterical afterward, I didn't want to watch my sweet kitty go.

A little while after we got home the doorbell rang. My nurse didn't get my message. Since she was here I just let her go ahead and access me. Only my port wouldn't return blood. She thought she was missing it. So today another nurse came out to try. She got it in one shot but then there was no blood return. That means yesterday the nurse was probably in too. So now I am accessed while I wait to hear what the all knowing IV people want to do. Probably TPA, an enzyme that dissolves clots.

This week can go fuck itself.

Bad Froggy!

2011-06-29T13:54:00.000-07:00

Ok, so I know that I haven't blogged in 6 months, BAD GIRL! Sorry 'bout that. Its just that things have been stressful and I just didn't feel like talking about it. Most of the cause of this stress is directly related to money and the fact that I have none.

Anyway, let me update you all on the health stuff.

I started treatment for my MAC in early March. So far so good. I take 1000mg of ethambutol a day, that's a very strong antibiotic normally used to treat TB. I also take 250mg of azithromycin, a good broad spectrum antibiotics. Then there is inhaled amikacin 3 times a week. Not a bad regemin at all. I just had sputum cultures taken a couple of weeks ago so I am just waiting for those to grow out and see if there are still MAC buggies in there.

I am feeling much better since starting the MAC therapy and I haven't had to go back on IV antibiotics since I finished at the end of January. YAY! My energy level and appetite are up from 3 months ago, my lungs feel clearer and I don't get short of breath so much.

I have been struggling a bit with my blood sugars. Since the begining of the year I have needed less and less insulin and its become a lot harder to manage things. I keep taking too much insulin and then chasing lows all the time. So, today I saw the NP at the diabetes clinic who works with a lot of CFRD patients. She is trying me out on some long acting insulin to see how I do. This will hopefully make it easier to keep my blood sugar stable and reduce the amount of fast acting insulin I am taking so that I won't have so many lows. We'll see what happens. I am also scheduled for a 3 day blood sugar sensor test in August. This will show how this new plan works and what might need to be changed.

So that's about it I think. I'm broke but my health issues seem to be looking up. I promise to try and do a better job of blogging.

The roller coaster continues.

2011-01-20T09:01:00.000-08:00

Early in the morning on January 6th I woke up having horrible chest pain in the same place that my left lung collapsed a year and a half ago. It only continued the odyssey of the never ending infection that just won't die! I went to the ER, no collapse, that's good news. I had PFTs done. Down 17% from 3 weeks prior, not good news. I put my foot down. Stronger antibiotics, now. This on and off shit wasn't cutting it.

If you've been following my blog for a while you'll know that I dispise my CF clinic. They don't listen, aren't aggressive, rarely let me see the one doctor that I do like, and in general act like they don't care much. No one there ever seems to comprehend the fact that I know my body and my disease better than they ever will. Unfortunately, there isn't anywhere else I can go without moving which isn't an option right now unless someone out there wants to pay for me to get settled into a new place.

All of that is why I had a fit when I was told that the doctors didn't want to give me tobramycin (one of the better, and stronger antibiotics out there, complete with terrible side effects) because I already had some minor hearing loss from it. I looked into that nurses face and said "I'd rather be deaf than dead!" I must have struck some kind of chord with her because I got my tobra. I also got zosyn, which is another strong antibiotic. Its a combination of 2 drugs and must be administered every 6 hours. A pain in the ass for sure, but if it kills this thing then so be it. I can sleep during the day if I need to. I made them keep me in the hospital over night because the zosyn was a new med for me. Since we still don't know what triggered my seizures I didn't want to chance having another one at home alone while on a new med.

Fast forward 2 weeks. I'm feeling better. I've been coughing up buckets of wretched slime from my lungs. I've done the cough and puke manouver more times than I can count lately. I've lost 5 pounds from the vomiting and the ab workout that is a side effect of it. If you want a flat stomach quickly cough and puke is the way to go. Not fun, but it gets results.

My cough started to taper off over the weekend. On Tuesday I actually I had some energy for the first time in a long time. I was able to be productive around the house. Yesterday I went in for follow up PFTs. I'm back to baseline. But again I put my foot down, another week of the meds. The past few month's track record doesn't speak highly for only doing 2 weeks, neither does the fact that I've only JUST started feeling better. I won, half way at least. No more tobra, they're worried about my ears. I'd still rather be deaf than dead, but the kidney failure it can cause worries me and I don't want to push that issue.

We're still waiting on the sensitivities for the MAC, it grows so slow. But when that comes back I'll push to treat it. I don't have the lung function to spare on a wait and see approach. If the CF clinic won't treat it I'll find an infectious disease specialist. One of these days maybe they'll learn that I'm in charge, not them.

2010 in review.

2011-01-05T13:47:00.000-08:00

Since the new year I've been thinking about how best to revisit 2010. It was a hell of a year in good ways and bad. Obviously I don't want to focus on the bad but there were some pretty rough things that happened, especially in the last couple of months. So while it does garner some focus, I'll try to also tell you how the bad times have changed me for the better.

Right at the begining of 2010 I had my heart broken, which is always tough. But in retrospect him and I weren't on the same planet not mention the same page as far as what we wanted and how we felt. So it was really for the best. Besides, I found my J a couple of weeks later! Look at that handsome man!

In Fenruary of last year I was given the opprotunity to take a voluntary lay off from my job. I had known for a while that I wasn't going to be able to continue working for much longer. I was just getting too worn out. I was constantly exhausted, eating nothing but junk if anything at all because it was easier than cooking, and sooner or later I was going to get sick because of it. By taking the lay off I was given a pretty good severence package that would sustain me for at least a few month while I filed for disability. So on the 5th of March I said good-bye to the company that had been my second home for 4 1/2 years. It was definately the right choice. Now I can sleep as much as I need to, I can fit in my treatments, making doctor's appointments is easier, and on days when I feel like crap I can stay in my jammies, snuggle my kitty, and stay at home! The timing was perfect as well. The lease on my apartment was up at the end of April so I got almost 2 full months to pack up and move in with J.

Unfortunately at the end of March my dear friend Eva passed away while waiting for a second double lung transplant. You may remember that I had the chance to meet her in October of 2009 when my cyster Tally and I went to Vancouver, BC Canada to see the documentary she was in about her and her transplant experience. At that time it had been almost 2 years since she got her lungs, but she was already in chronic rejection. She was the first CFer who'd had a transplant that I got to meet in person. Even as sick as she was at that time, with her new lungs failing, she was so alive. I still miss her very much, but I feel so privledged to say that she was my friend. Look for the film, 65 RedRoses to air on the new OWN network this spring. As more information comes out about that I will be sure to keep you all apprised of it. As much as losing her hurt I would not have given up her friendship for anything.

At the end of April I packed my bags, got on a plane and went to Boston. A CFer who was a large part of my online CF world had passed away at the end of 2009. His parents decided to hold a belated memorial service for him in Boston. This was such a wonderful thing for so many of us at CF2chat.com. We had months to plan and so many of us were able to make it! Look at all of us there!

Paul probably would have been horrified since CFers are not encouraged to hang out together, but clearly we all wanted to say good-bye to him properly. He should be proud that he was the reason we were all there. I finally got the chance to hug some of the best friends I could possibly have! There is nothing like people who just understand what you're going through because they're dealing with it too. As much as I love my non-CF friends, my CF friends have a very special place in my heart that simply cannot be filled by anyone else. I love you guys.

Shortly after I got home from Boston it was apparent that I was getting sick and needed IV antibiotics. I average about every 6 months for those so I was right on schedule. That round, although a little rough due to side effects, did me a lot of good. I felt absolutely amazing for 3 weeks after finishing!

Most of the summer was rather uneventful, the weather here sucked so we never even got to go swimming very much. Bleh. But at the end of July J took some vacation time, we packed the car and headed for eastern Washington. We stopped off to see my parents, it was the first time they met J and the first time I had seen their house. After dinner we piled back in the car and headed for Chelan. Its such a cute little town right on a big lake and is a popular vacation spot. I had never been there before and I loved it! We found a place to camp and the next day was spent at the water park. Unfortunately early the next morning I woke J up having a seizure, which was a completely new thing for me! J called 911 and I was taken to the local ER. They ran all kinds of blood work, did a head CT which was normal, and sent me home. I don't remember much of that day, which is common after seizures. Just over a month later I was seen by a neurologist who ordered and EEG and an MRI of my brain. Those were both normal as well. I was told that there was no obvious trigger for the seizure and my chances of having another one were about 25%. Remember that.

For my birthday I boarded a cruise ship to Mexico! The only thing that could have made that vacation better would have been having J with me. But this trip had been planned before I met him. I saw dolphins, went parasailing, ate the most AMAZING food, and got all the sun that was missing from Washington in the summer. I had a wonderful time and I really want to go back to Cabo for.....well forever, but I'm not rich. Observe this gorgeous sunset in Puerto Vallarta.
At the end of October I received my very first disability check! That all went through will NO problems, which is almost unheard of. Finally some luck related to my health! Which is good, because in the middle of October things kind of went south. I started having some left lung pain. That's the one that partially collapsed on me before. IV antibiotics for a bit of pneumonia were in order. After 2 weeks I was feeling good, so the abx were stopped.

The weekend immediately following the last of the IVs I attended the memorial service of a friend and CFer, Gess. I'm pretty close to his wife (L), I got to meet him in person in Boston. They live in Seattle but I had to go all the way out there to meet him! Ha! I had met L before though. Gess had a rather sudden decline after a procedure was done on his liver. It was hard to go there, to say goodbye to someone who had been doing pretty well just a few months before. It was hard to see L going through that. But I really felt that I needed to be there, not an obligation really. I just felt that I needed to let L know that I am here for her, that I am sorry for what happened, and to pass all the hugs and messages from all of those on CF2 who couldn't be there. And I needed to do it in person. Love to you L.

Within just a few days I was feeling like I had never done the IVs. By the end of that week I was back on them. Thanksgiving came, I cooked a gigantic dinner that really impressed J. I got results back on a sputum culture that showed mycobacterium avium complex (MAC). Its one of those bugs that is kind of everywhere but is only a problem if your lungs suck. The bad news is that its hard to kill it. At this time I'm still waiting on the results to find out what will kill it.

I finished the second round of IVs. And was right back on a week later. This time they actually listened to me and changed the meds up. It turns our that I'm moderately resistant to what they had me on for rounds 1 and 2. Way to go CF clinic.

In the middle of the 3rd round of IVs, I got up in the morning to do my IV. I felt drunk. I banged around the bathroom when I first got up. I banged all the way down the hall like a pinball. I banged around the dining room. I banged around the kitchen. I dropped my stuff. And then some strange guy was looking at me. I'd had another seizure. Remember that 25% chance of having another one? I guess they were wrong on that. Most of what I know about this one J told me later because again, I don't remember most of that day.

J heard me bashing around all over the place, but I had taken a lyrica the night before because my fibromyalgia was flaring up. That stuff has a tendency to make you feel weird of you don't have enough time to sleep it off. So he didn't think much of it (incidentally, I don't think the lyrica had anything to with the seizure because I've taken it off and on for years without trouble, I also had NOT taken it before the first one). But then he heard a loud crash which was some combination of me slamming face into what was probably the fridge door and then falling on the floor. The only reason I know I hit my face is because of the black eye I had the next day. He ran out to the kitchen and found me mid-seizure. He thought I had dislocated my shoulder because of the way I was laying on my arm, I didn't thank you very much.

He called 911 and I started to come back to this world some time after the EMTs got there. And apparently the entire fire department came because J said there were about 9 guys here. I don't remember telling J that I wanted him to bring clothes to the hospital for me but I guess I attempted to. I say attempted because what actually came out of my mouth was complete giberish. Luckily he understood my hand signals. I don't remember getting put in the ambulance, but I do remember the guy asking me where I was. I said Chelan....which is where I was when I had the first one.

I kind of remember getting to the hospital. I remember being very twitchy, which they said happens sometimes because the brain is still trying to fire randomly. I got some ativan for that, consiquently most of the rest of the day is a total blur or nothing at all. I know I slept a lot, I know I talked to my mom but I couldn't tell you the details of the conversation. The hospital I was taken to got in touch with the neurologist I saw before and I was given a perscription for an anti-epileptic. I will be seeing the neuro again at the end of this month.

Christmas wasn't too eventful. We had Christmas Eve dinner at my friend's house. They gave me a shot glass from the Caribean and a gift card that J and I used for a movie. J gave me a reall cute froggy soap dispenser that ribbits and a pretty necklace and earring set. I got him a t-shirt with a smart-ass saying on it, very him. We also got matching rings. So we're pretty much married except for the piece of paper that says we are. We see no reason to make it legal, been there done that.

New Year's Eve was also rather tame. We went out to dinner, then came home and watched the fireworks at the Space Needle on TV. We were in bed less than 10 minutes after midnight. Yeah, we feel old.

And lastly, to my J. I know that I'm sometimes not easy to live with. My medical problems add a massive amount of stress to your life that you are in no way required to take on. Sometimes I don't know why you haven't said "enough is enough!" But the fact that you haven't tells me that you are the kind of person that sees me as a person, not as a medical case. I love you so much for that. I do hope that you stick it out with me because I can't do this alone.

And that is my 2010 in a nutshell! Stay tuned for news on all this seizure nonsense as well as what happens with the MAC infection! I hope you all have a wonderfull 2011!

Fear.

2010-12-25T17:31:00.000-08:00

For the first time in my life I'm scared to be alone. This last seizure has me really worried. What if the new med doesn't work? What if I spaz out while I'm cooking? What if I can't think straight enough to call for help? What if I burn the damn house down!? I'm gonna go rock in the corner now.

Uhg, this again!

2010-12-20T17:20:00.000-08:00

I woke up this morning to start my IV (I've been off and on IVs for 10 weeks!!!) and I was really out of it. It was like I was really drunk. I got into the fridge and the next thing I know some strange guy was looking down at me asking me questions. Things were REALLY fuzzy for me at that point and I didn't know what was going on. Somewhere along the line someone said that I'd had a seizure.

Joe had heard some louding banging around while I was in the kitchen. Then he heard a really loud thud and got up to check on me. He saw me on the kitchen floor having the seizure. He called 911 and got an ambulance right away.

During the ambulance ride I was really confused. I actually thought that I was in Chelan again, which is where I had the first seizure. I didn't know the date either. It took a while but slowly I started coming around again and was pretty much back to myself by the time I got to the hospital. Joe showed up a little bit later with one of my syringes of IV med, my purse, my coat, and clothes (I had been wearing a little nighty).

The ER got in contact with the neurologist I saw in September. He wanted me put on an antiseizure med. I got my first dose at the hospital. I'm not sure if it was that or just all the stress and weirdness but by the time I was discharged I was very sleepy. We got home around 11 I think and I went straight to bed and didn't wake up until 5.

Goodbye friend.

2010-11-06T10:33:00.000-07:00

Four days ago my friend Gessner was taken off of life support. He had CF, he was a fiBro. I got to meet him in Boston in May. I've gone out to coffee with his wife, they're from Seattle. He had a massive infection that just shut down his body. I wasn't able to go to the hospital to visit because I'm on IVs for pneumonia. I feel bad about that. I know his wife understands, if anyone would its her. But part of me saw this coming, I knew that when he went on the vent he wouldn't come off of it. But still, I have no business wandering around the hospital possibly infecting people.

Gess was a good guy. One day chatting on facebook we compared CF tattoos. He's definately going to be missed by many people. But I do find it comforting that his corneas went to someone. His last act was helping someone see. I know that where ever he is, he's happy about that.

My xray experience.

2010-10-28T23:19:00.000-07:00

So I went in for a chest xray. I'm a verteran of this process and I hate to change at the hospital. So I wore a sports bra under my tshirt. No metal, so no changing. I got checked in at the desk and the lady said "Oh you get these a lot, so you know the drill right?" Yup, I have a seat and wait for my xray person to call me.

My xray person called me in a couple of minutes and we headed back to the room. She then notices that I'm not wearing a humilating hospital gown. "Is there any metal in your bra?" she asks.

I say no. She says "No clasps or hooks or anything? Because I'd just have to have you change and redo the xrays which gives you more radiation."

"No metal, I get these all time so I know how it goes."

She takes the first shot of my back. Before she even gets back into the room I have turned around for the side shot and I'm holding onto the bar above my head. She kind of giggled and said "Oh! You really do know what you're doing!" Damn skippy!

Dear Lung,

2010-10-28T22:12:00.001-07:00

Last year when you decided to get all pneumonia-y on me you didn't give me a single clue that anything was wrong until a large section of you collapsed. You've never been quite right ever since then. So when you started to hurt a little bit on Monday I wasn't too worried. Its happened before but has always gone away. However, this time it didn't go away. I would really prefer not to go through the hell of having you collapse again so I called the doctor. A chest xray was ordered which showed a small spot of pneumonia. So, while having you hurting me is not fun, and IV antibiotics are less than conveinient, I do appreciate the warning this time around. Now, please stop doing this like this from now on.

Mexico.

2010-10-09T21:36:00.000-07:00

I know I said I would do a real blog about my trip to Mexico......but I just haven't been feeling it. So let me just say that I had a great time, the cruise ship was awesome, and I would definately do it again. I'm working on a new slide show to put that will probably put things into words better than I can anyway.

On another note, the night I got home from Mexico I ended up in the emergency room. *eye roll* My left lung started hurting. Last time my left lung hurt it collapsed and I ended up in the hospital for 4 days and on IVs for 3 weeks. So I didn't want to screw around with it. But I basically wasted 6 hours of me and J's time over nothing. Oh well. Better safe than sorry right? Now my sinuses are really bothering me.

I'm home!

2010-10-04T23:05:00.000-07:00

I just wanted to let everyone out there know that I'm back from Mexico! I had an awesome time and I will do a better blog about it later I promise. I'm just wrung out from traveling, then a little while after I got home I ended up in the ER with chest pain. They were concerned because I flew so they wanted to rule out a clot. It turned out to be nothing and I went home. The pain is gone today but I woke up with a bad migraine so I slept most of the day. Welcome home right? Can I go back on the ship because I felt fine there!

Tattoo Evolution

2010-09-18T14:05:00.000-07:00

So, I've decided that I want to add to my CF tattoo (the 3 purple roses). The roses represent me, my brother, and our cousin, all with CF. I want to add a fully bloomed rose for each of close cysters and fibros that I've met, and a rose bud for the ones who died before I got to meet them. The original roses are the only ones that will be purple, all the others will be the color that the person chooses (or in the case where they have passed away their favorite color or the closest thing to it other than purple). I'm thinking of doing banners for each rose with the person's name but I'm not sure about that yet. I hope to add 4 or 5 roses every year as I have the money. Eventually this thing will be a sleeve because we're talking about a lot of people.

Neuro follow up.

2010-09-12T20:49:00.000-07:00

My MRI and EEG were totally normal! As it stands now my chances of another seizure are about 25% and I don't have to go back to neuro unless I have another one!

Nuerology appointment.

2010-09-03T20:37:00.000-07:00

So I saw the neurologists today for an evaluation of my seizure. They can't pinpoint a cause for it, so as far as that goes I got no answers. It still could have been the PTC 124 but the company hasn't had any other reports of seizures. Hopefully now that I've had my follow up visit they will unblind me soon.

They want to get an MRI because its a better image for them to go off of. It could show very tiny blood vessels problems or very tiny tumor(s) but the chances of either of those is small. The more they rule out the more my chances of having another seizure decrease. They also want an EEG to check my brain waves. So we'll get those done and see what happens.

Walk your Cheffi.

2010-08-21T04:20:00.000-07:00

Here I am at 4-something in the morning, hacking my brains out from a cold (that's another blog) and I am reflecting on J's efforts to walk his Cheffi every day.

For a short time J's daughter couldn't say my name correctly. It kept coming out Cheffi. Well, it stuck. I'm ok with this though, I've had worse nick names. Now she says my name correctly and J and his son will probably forever call me Cheffi. It will be one of those stories we tell everyone until the end of time. When K was little she called me Cheffi and Cheffi I stayed.

So, I'm Cheffi. And I frequently call J "my J". So of course he calls me "my Cheffi". Well a while back we made a pact to excersise regularly.....then we promptly failed to follow through on it. So sometime last week J got motivated again. We were out somewhere, probably Green Lake in Seattle, and he said something about having to walk his Cheffi. He knows that I need to build on excersise slowly so he has decided that for the time being he's going to walk his Cheffi daily. Its become one of our little coupley things. "Don't forget to walk your Cheffi today!" So he takes me different places. We even hiked half way up Rattlesnake Ridge, and would have made it the whole way if it hadn't been so hot that day.

Yesterday J decided he couldn't live without a foot long chilli dog from Sonic. Well we don't have a Sonic close by so we litterally made a day out going to get this hot dog. We got to Ferndale, which is almost to the Canadian border, he got his hot dog and I got popcorn chicken. Then we decided to take Chuckanut Drive back. If you get the chance to do this drive then do it. Its gorgeous. We even found a little state park with a fairly easy trail down to the beach. Even in my sick state I could handle it. So J got his hot dog and Cheffi got her walk, even sick.

The moral of this story is this: if you have, or ever aquire, a Cheffi, be sure to walk her every day. Its good for her, especially when she's sick.

BLAAAAAAARGH!!!!

2010-08-18T11:38:00.000-07:00

Picture it! A 3 year old little girl wakes up on Monday sneezing her brains out and with a drippy faucet for a nose. She of course is too little to understand about covering her face when she sneezes. And she is also too little to wipe her own nose. I was as care ful as I could be, hand santizer galor! And yet, now I have the snot faucet nose, my throat feels like I swallowed sand paper, and I have a nasty cough. Uhg. I don't need this. Humph! At least I'm getting it out of the way now and not doing it when I'm supposed to go to Mexico.

Where do I even begin?

2010-07-30T21:38:00.000-07:00

J and I decided to spend a chunk of his vacation in eastern Washington. So on Tuesday we packed up the car and headed for my parents house. I hadn't seen my mom since I was sick last summer (almost a year ago) and I hadn't seen my dad since December. I had never seen their house and neither of them had met J. So we stopped by their house for dinner. Dad grilled a salmon....mmmmm. We had a nice little visit and the parents got to meet the man.

Then we headed for Lake Chelan. I had never been there, and it had been a long time for J. I liked the town instantly! Its so cute! And the lake is GORGEOUS! I couldn't wait to get in it! But we had to find a place to camp...which took forever! Grrr. It seemed like every place on the map was full. Finally we found a spot about 2 miles out of Mansen, another little town on the lake. Too bad there were about 6 million mosquitoes! We got eaten alive by the time we got the tent up. And of course a few got in, but we got most of them killed by the time we went to sleep.

The next day we wanted to try and get a spot closer to town so we packed up our stuff again. We stopped and got breakfast, then went to a little park on the lake. It was still a little early to swim so we walked around a bit and met a one footed goose. We named him stumpy.

Then we went to the water park! For being a really small park it was pretty fun, and the price wasn't bad. We went on a few slides, had lunch, more slides, then headed back to the same camp ground we slept at the night before. This time we got a different spot though and I didn't see so many moquitos. Once we had camp set up we went back to town for dinner. It looked like a storm was coming and it was sprinkling by the time we were done with dinner.

From our campsite it looked like we were going to just be on the edge of the storm, but we were very wrong about that. It wasn't too long before were desperately trying to hold our tent together because the wind was so bad. It finally got to the point that we had to take it down. I got our stuff out as fast as I could while J held the thing together and kept it from flying off. We got the thing collapsed and threw the pieces in the trunk without caring how the went in there. J went to go rinse off in the shower after that and I hung out in the car. I think I was alseep by 11 o'clock or so.

And then I woke up in an ambulance. Well, not quite. I remember waking up just enough to notice that the sun was coming up, and rolling over. Then I was coming to in an ambulance with J looking like he just saw my head spin around in circles, and an IV in my arm. I don't remember asking but somewhere along the line someone told me I had a seizure. o.O Ok......that's a new one. I was really confused and had big gaps in my memory but the closer we got to the hospital the better it got, and by the time we got there I was pretty much back to normal.

They ran some blood work but nothing came up. They called my doctor in Seattle to notify him what had happened. Later that day the nurse called me and said she'd notify the nurse running PTC 124 and see about getting a nuerology appointment. The ER doctor said that 75% of people who have a seizure never had a second one, and that I may never know for sure what caused it. They gave me some ativan while I was there and told us to go home. The atavan knocked me out for pretty much the entire ride home. I pretty much slept all day, I kind of remember unpacking the car and waking up to eat, then going back to bad. If you have trouble sleeping that stuff will work, wow! I don't see how people who have to take it all the time function.

Anyway, it looks like I probably have to stop PTC 124 for good. Which sucks, but so do seizures! I am SO sore today, from my knees to my neck. I can barely move. I really hope this is a once in a life time experience. I'll keep you posted out there in internet land.

How to not go stir crazy.

2010-07-16T14:16:00.000-07:00

So what do you do when you're disabled, not working, and therefore have no income? Well, personally I knit. I don't have the energy to clean my house from one end to the other all the time (or the desire). Sure I like a clean house, but between CF and fibromyalgia I really have to pace myself. I keep up with the kitchen pretty well (although I do need to mop, gotta find the Swiffer). I can usually keep up with laundry. J likes to vacuum so I never have to do that unless I spill something. So, I knit. It doesn't sap what energy I have, and it makes me feel productive since I'm actually creating something. I crochet a little too. When I get bored with knitting I'll crochet a few little toys. Those are fun and they use up scrap yarn. Here are some pictures of stuff I've done recently.

Kid sweater. My first sweater ever!

My first shawl. The kitties approve.

A sweater for me!

Baby blue dragon.

Little mousey.

Multiple updates.

2010-06-30T18:03:00.000-07:00

Nausea: Its still there. Its not getting better. Its been 6 weeks. I called the nurse running the PTC124 study and told her that I'm having a very hard time taking the med because I feel so sick most of the time. She talked to the doctor and they squeezed me in for an appointment today to see her. The doctor seems to think that its related to the study drug. The timing fits and the fact that its not getting any better no matter what I try would point to the drug as well. So, she told me to stop taking it for now and see if I get better. Apparently this company is very lenient (sp??) on this kind of thing and I can stop for a month without being kicked out of the study. If stopping the drug doesn't help then I have to go get tested to see if I have slow gastric emptying. I also got a perscription for zofran, YAY.

Cayston: The doctor doesn't want me starting anything new until the nausea is resolved. She isn't worried about the minor drop I had in my PFTs during my trial.

Dexa scan: There have been no changes in my bone density which is good. Its not getting better but at least its not getting worse! I have minor osteopenia of the spine, but not of the hip.

CF clinic today.

2010-06-14T18:57:00.000-07:00

So I had a clinic visit today and it went pretty well. My PFTs are down a bit but I had to work like hell to get up a stubborn plug over the weekend so I've got some pretty bad inflamation going on right now. I'll be doing a prednisone burst for that. I still feel very clear (other than that plug) from the IVs though. So maybe that's a sign that the PTC124 is working. That would be really nice!

I've been having some nausea which, obviously, is really annoying. My symptoms don't seem to fit with slow gastric emptying, when I puke its within an hour of eating usually, not puking up dinner for or five hours later. It doesn't seem to corolate with any particular foods or times of day. They think I may be having some reflux but without a lot of they typical heart burn that goes with it. So I'm going to be trying a perscription reflux med and see how I do.

I'm going to try cayston too, to alternate with colistin. I don't know if I'll be able to get more than a month's worth though because I won't have insurance next month and Medicaid hasn't kicked in. So I might get a month and then have to miss the next cayston month. We'll see how it goes.

And my enzymes aren't being made anymore so I have to try and find something that works. I'll be going to zenpep 5's. We'll see. I hope I don't end up with horrible stomach pains.

She got lungs!!

2010-06-13T08:27:00.001-07:00

Yesterday I woke up to the best news! My good friend and cyster Piper got her double lung transplant!!!!! Whenever I get to thinking about it I start to tear up. She's been waiting such a long time, and she's had to many calls that didn't work out. Once she was even brought to the OR and sedated when they found out that it was a no go. I can't even imagine how hard this has been for her and her family. But they held on through everything. And it paid off. I can't even describe how happy I am for her.

Considering what happened to Eva, passing away while waiting for lungs, this is absolutely the best news I could get. She should be off the vent some time today and I have no doubt that she will imediately ask to go for a walk. This cyster knows how important it is to move, she worked out SO much while she was waiting. She's really inspired so many CFers.

Piper, I know you'll continue to do awesome because you worked so hard to be ready. I love you cyster and I am so happy that you get to start a new life with your new lungs.

And let's not forget the donor and their family. This family turned their sorrow into celebrations for other families. They appreciated life enough to pass it along to others and that's an amazing thing. The donor family is in my thoughts, thank you so much for giving my friend a second chance, she needed and deserves it so much.

Epiphany.

2010-06-09T19:05:00.001-07:00

After my fibromyalgia class (I think of it as a class, I'm learning a new way of life) today I had a huge epiphany. I used to be extremely athletic. I loved volleyball, I lived and breathed it. It was my passion. I was an athlete through and through. So whenever a doctor would get on me about excersising I would think "ok, I know how to excersise!" And I would go out and do volleyball drills, lift weights, and run. And then I would be in so much pain that I could barely move for the next week. I'd get depressed and discouraged. Eventually I just thought "I guess I can't excersise anymore."

Today I realized that I have to stop thinking about it as training. I'm recovering. Recovering is harder than training in every way. Its definately harder physically, as well as mentally and emotionally. I didn't think of my physical therapy after my shoulder surgery as training. I was trying to get better. They started me off small, then built on that once I gained more mobility and strength. This is no different. I can't jump in the deep end and expect to swim.

For the first time in years I have hope of getting better and getting back into shape. It might take a long time, and I'll probably have setbacks. But that's ok. I'm learning the skills I'll need to bounce back from those setbacks. I'm learning how to get better.

A quick post.

2010-06-02T21:07:00.000-07:00

So I finished IVs last niht, YAY. Its always nice to be done with that. I'm feeling really good, haven't had anything to cough up in close to a week. I'm eager to see if I stay cleaned out longer since I'm on the PTC 124 study. It would be nice to get more than 6 to 9 months out of this round.

I really don't have anything else to report. Things seem to be holding steady and now that I'm done with IVs I'm lookin g forward to summer even more!

Feeling better

2010-05-26T12:48:00.000-07:00

I'm through the first week of antibiotics and feeling much better! For the first few days I was pretty nauseas from the oral antibiotics I was on. Even reglan didn't help so we had to switch that to levaquin, which I tolerate better anyway. No more fevers, my cough is better, there is hardly anything to cough up now, the shortness of breath is gone too.

Today I had my port needle changed so I deaccessed myself after my morning IV and got a really good shower! I ran out of hot water because I was in there so long! I love needle change day, you don't get that little bit of freedom with PICC lines. I was able to exfoliate and shave my arm pits (very hard to do without getting the dressing wet). I try and take short showers with my port accessed because the longer I'm in there the greater the chance of getting my dressing wet, even when I cover it. Lets face it, tape is tape and doesn't like to stay on in water.

AAAAAAAAAAARG!!! Rant.

2010-05-20T15:45:00.001-07:00

So I was having some nausea from my antibiotics, not too bad but enough that I didn't want to eat. So yesterday I called and asked for something. They called reglan in for me but only gave me 2 days worth because they wanted to make sure it worked or we were going to change my meds all together. Which I think is kind of stupid anyway because if I'm going to pay for a perscription then I want enough to get me through instead of having to pay it AGAIN later. Even if it didn't work I could still have it on hand. Whatever.

So today the other nurse at my clinic calls me to see how its going. I tell her the nausea is MUCH better so she says she'll get me some more to get me by. But here's the kicker, I only get a week's worth because according to her "its not a good med to be on long term." O.o Ok, and feeling like I could puke at any second is GOOD?? I'm on the freakin antibiotics for 2 weeks! What am I supposed to do for the other half?? Luckily I seem to only need half of what they perscribed so I can sqeak by.

The nurse yesterday was supposed to leave a not saying that I am switching pharmacies. I should have known something would get all fucked up dealing with 2 seperate people. I went to Target to get my meds. Well, apparently they DID call there, but said "Oh, wrong pharmacy!" and then called my OLD pharmacy! I swear, I hate these people. Its always something and I'm SO sick of it. And yet there is NO other clinic I can go to in this state without traveling to the complete other side of it!

IV time.

2010-05-18T13:43:00.000-07:00

I've been debating for a while if its IV time. At the end of last week I decided that it is. I held off calling until yesterday though because Sunday was Great Strides. That was probably dumb, I can't believe I actually made it 3 miles.....with hills. Oh well.

I got scrips for oral cipro and double strength septra. A combination I hate with a passion, I get pretty nauseated on it sometimes. I also got IV ceftaz. Ceftaz works great for me so I'm happy about that. I do hate the every 8 hour schedule, never getting 8 hours of sleep at once sucks. But now that I'm not working I can take a nap whenever I damn well want to. If Joe is willing I'm going to teach him how to hook me up so he can start my first one of the day before he goes to work.

PTC124: Randomized.

2010-05-11T15:13:00.000-07:00

Today I was officially enrolled into the PTC124 study and took my first dose! All I have to do now is stir 2 packets of powder into a little bit of milk or water 3 times a day. Its supposed to be vanilla flavored but I don't think it tastes like much of anything. It is a little bit bitter though, but I can deal with that. Let's just hope that I got the real thing and not a placebo!

Boston!

2010-05-05T10:27:00.001-07:00

I'm having issues uploading a picture so I'll try again later, but let me tell you about my trip!

Earlier this year it was announced that there would be a belated memorial service for one of my CF friends who passed away in December. He lived in Chicago but had a lot of family in New England so there was a memorial held for him in Boston. Since there was so much advanced notice about this many of my totally awesome online CF friends decided to attend.

I flew out to Boston on Thursday. First I flew to LA then to Boston from there. I saved a lot of money doing it that way so it was worth it to me not to take a direct flight. It was a long day and landing in Boston I got REALLY air sick, which never happens to me. But I got there!

My cyster Amy picked me up at the airport. We had a little issue of not being able to find each other for a while, but eventually we did. Its actually pretty funny. Amy hasn't lived in the Boston area very long so she doesn't know the airport very well yet and I had NEVER been there. Yeah, we made a great team!

The hotel room I got had a kitchenette (I mostly wanted that to make cleaning my nebulizers easier) so we stopped off at a grocery store for provisions. As a CFer I cannot live without double stuffed Oreos and whole milk. I got checked into my hotel room. I was sharing with two other cysters but they didn't get in until Friday evening so I had it all to myself the first night. Amy had some leftovers that she brought for me, which was totally awesome because I was exhausted and didn't want to deal with getting food or, heaven forbid, cooking. I got my essentials unpacked, ate, and crashed. Amy let me borrow her portable oxygen concentrator which was awesome! I didn't have to spend money on renting one or deal with it on the plane.

In the morning when Amy and I had both gotten up and ready she came to the hotel (only 10 minutes from her place) and we headed off for adventure! We took a drive up the coast first. Its so gorgeous there! I love all the victorian houses. Then we headed into Salem to see some witch stuff. We went to a museum that does a live reinactment of a witch trial and has a replica of the dungeon where all the "witches" were kept. I learned some really interesting things about that time period that I hadn't known before. I picked up a shot glass for my collection too.

Then we headed over to Amy's for a bit to relax and have dinner. Next it was off to Shawn and Tina's for a little CFer gathering! Shawn had his lung transplant about a year and a half ago, so he is the second post-transplant CFer that I've met in person. Tina is his wife and she has more personality than anyone I know! She's awesome to hang out with. She also had all this really yummy food so I can't argue with that at all. And there dog was cool, I wanted to take him home.

After a little while the others started to show up. First was my cyster Talana. You may recall that we went to Vancouver, BC in October. It was so awesome to see her again! She was also one of my roommates at the hotel. Next was Graves and Patti. Graves lives in NYC and took the train up to Patti's in upstate NY then rode with her out to Boston. Patti had a double lung and liver transplant three years ago so she is the third post transplant CFer I've met! She was my second roommate for the trip! Graves' best friend passes away from CF a few years ago and he is now in school to become a resperatory therapist!

We all had a great time hanging out IN PERSON!!! These people are my second family, which might sound weird considering this is the first time I met most of them, but keep in mind they are a part of the CF world which is a very exclusive club. I've known most of them for years via the internet.

Saturday was Paul's memorial service. Talana and I missed the grave sight service because she was exhausted from traveling all day the day before and we stayed up late talking. So we both needed to sleep in. But we went to the mass that was held at Boston College. It was a nice service, my first Catholic mass, so don't ask me to give details. I was a little lost most of the time. We did all agree though that it was nice to know that no one would be bothered by our coughing.

After the mass there was a luncheon that was arranged by Paul's family. There were about 17 CFers there. It was the largest gathering to date from our website. I got to meet so many more CFers and many of their significant others. After lunch we all went outside to take a group photo (that's what I've been trying to upload). Then we all stood around chatting for a while.

There was a party for the release of Paul's CD later that evening but not everyone attended (me included). I was pretty worn out from traveling and everything and just wanted to take it easy. But a bunch of us (Patti, Graves, Talana, Kevin, Bill, and me) went back to the hotel to hang out for a while and cool down (it was WARM). Then we all went to get Chinese for dinner. The place we went had great food and there was a plaque on the wall saying that they support CF! Since our hotel had the kitchenette and Talana and I were going to be there for a couple more days we got all the left overs too!

On Sunday morning me, Patti, Talana, and Graves hung around the hotel for a while and then Patti headed home. Graves was taking the train home from Boston but it didn't leave until 7:00 pm so him, me, and Talana headed into Boston for the day. We met up with Cheryl and Malora. Malora has CF and Cheryl is her mom. They live in the Boston area so they were able to show us around. We ate at Cheers first. It was a really hot day, Cheers was all glass (think big green house) and on Saturday there had been a water main break west of Boston so there was no ice for our drinks! So that kind of sucked but the food wasn't bad.

Cheryl and Malora took us to the Old North Church which is were the latern was lit that signaled Paul Revere's ride. Then we headed toward the water because it was SO hot. We spent quite a while there because it was so much cooler. When we headed back toward the garage where we parked the car we got some ice cream which was perfect. There were some shops around so we did a little shopping for souveniers. I got another shot glass, a tshirt and a beer glass for J, a plush lobster for J's daughter, and lobster cat nip toy for Missy and Mouse, and a bottle with sand and sea shells for J's son (he loves the beach). After that we were tired so we left Graves with Cheryl and Malora since they could take Graves to the train station. Talana and I stopped for salty snacks on the way back to the hotel so we could replenish what we had sweated out. That night we just hung out and ate left overs since we were both tired.

On Monday we got together with Amy again and headed back into the city. We were going to check out the ship where the Boston Tea Party happened but then we found out that it was closed for renevations. So we got lost in downtown Boston and then found the Boston Common. Its basically a park in the middle of downtown Boston. There was some sort of military even happening, the marines were there with a bunch of planes and helicopters. We walked around the park a bit and then rested for bit (it was REALLY humid so we were all having a little trouble breathing). It started to get windy and it looked like rain so we headed back up to the hotel. That night Talana and I got our stuff all packed up and ate at Friendly's. Its a diner place that all these crazy ice cream desserts! I think I gained 5 pounds just looking at the menu.

On Tuesday morning we got up early and headed to the airport. My flights were good. There was one place where we hit some turbulance and dropped so fast that I was lifted out of my seat. I almost had a heart attack! Other than that one moment though my trip was fine. I made it home around 7:00 pm and got to see my J, and my kitties! The cats LOVE the catnip lobster! I didn't know it but Mouse doesn't usually care about catnip but he was all over that thing. In less than 5 minutes he had it soaked in spit. He kept playing with it all night and even woke us up a few times. Missy kind of played with it a little but she didn't like it as much as Mouse does. It was really funny.

Today I'm pretty sore. Flying is really hard on my fibromyalgia, but I am taking it easy and relaxing. I had a great time in Boston but its nice to be home and sleep in my own bed! Missy kitty has been loving on me all day. Since today is Cinco de Mayo J and I are going to go out for some Mexican!!

Troll Stroll!

2010-04-23T11:15:00.000-07:00

So about a week ago I was over at my apartment cleaning and sorting through the few things that were still there and I was listening to the radio and making a fool of myself singing and dancing through my chores. Well the DJ came on and said that the 106th caller (the station is Kiss 106.1) would win tickets to the Troll Stroll to benefit the Cystic Fibrosis Foundation! Well I was all over that! I fumbled around trying to get my phone out of my pocket, dropped it, tried to catch it but only suceeded in hitting it half way across my apartment. I snatched it up and started dialing. Busy signal. Thank goodness for redial. I must have called 10 times and was about to give up when the DJ answered the phone! I won the tickets!! WOOHOO!!! I talked to the DJ for a couple minutes, told him how stoked I was since I have CF, and it turns out his cousin had CF. Unfortunately the DJ was going to be working so he couldn't go to the Stroll.

The Troll Stroll is a pub crawl. It takes place in the Fremont section of Seattle. This year 12 bars participated. We got a t-shirt and drink tickets for all the bars good for a 7 ounce beer. Each bar had several beers to choose from. We only made it through 6 bars before we got sick of all the screaming college kids and I started to get drunk. But we had a really great time! Each bar also had specials on food and donated part or all of the proceeds to CF.

You're probably wondering why on earth they call it the Troll Stroll. Well, under the Fremont bridge is this guy.

PTC124, my thoughts.

2010-04-16T10:33:00.000-07:00

So here we are on the verge of a potential cure for CF. Its the thing that I've been hearing is 10 years away for my entire life. And I don't know how to feel about it. Assuming this works would I want it? Now, before half of you out there in blogger land read that and flip out let me explain.

I can't seem to decide how I feel about remaining exactly where I am for the rest of my life. If this works I'm looking at potentially 50 years of THIS. By this I mean mid-50s lung function. Sure I could regain some function back without having mucus plugging up my airways but the damage that has been done isn't going anywhere. Do I want another 50 years of struggling up a flight of stairs, panting while doing laundry, and walking a step behind everyone because I just can't keep up. I might complain about my health but I've never been angry about it because there was always the option of a transplant somewhere on my horizon. I would think "I might feel like crap now, but someday I'll have new lungs and it will be worth it." Would I like to live another 50 or so years? Sure. But do I want to live another 50 years feeling like crap? I'm not so sure that I do.

I'm doing this study for all the CF kids who might benefit from it. For the ones that haven't been born yet. This drug might not do a thing, but if it does work there are some kids somewhere down the line that will never have to ask themselves if they want to live the rest of their lives with half their lung function. They'll just live, and CF won't take away their dreams, or their lives.

PTC124 Screening.

2010-04-15T20:02:00.000-07:00

Today I was screened for the PTC124 study. If you haven't heard about this one yet then check this out: http://www.ptcbio.com/3.1.1_genetic_disorders.asp

So this drug is pretty promising for people with nonsense mutations (which I have one, yay me!), it has the potential to turn me into a carrier rather than a CF patient. I'll write up another blog in a day or two with my personal thoughts on all this, today I want to cover what's involved in the study.

My day started with fasting (everyone's favorite right?) for my blood work. I got to the hospital around 7:40 and ran to the coffee stand for an extra hot latte so that I could get my coffee fix as soon as my blood was drawn (I live in Seattle, gotta set your priorities). I signed the consent forms and my nurse got set up to access my port for my blood draw. Luckily she was able to get it on the first shot (you may recall past troubles with that). Its so nice having a port to do blood draws from!! I think there were about 9 tubes of blood and my veins poop out after about 5 so one poke and done is GREAT! I had ordered breakfast just before my blood draw so by the time we were done I could eat (yay!).

Next came some pretty standard medical history questions, then an NPD. If you don't know what an NPD is check this out: http://www.hopkinscf.org/main/whatiscf/diag_testnasal.html
We had a really hard time with my NPD. Part of my sinus surgery in December involved turbinate reduction, meaning they just cut away some tissue to widen my nasal passages. The problem is that without that turbinate tissue there wasn't anything to hold the catheter in place to do the NPD. They couldn't get it all on the right side, the stupid thing just would NOT stay in. On the left side they couldn't get it to the last measurement without causing me serious pain. It felt like a gremlin was in my nose going nuts with a hot poker. They think I might have a polyp back there that they couldn't see. They were able to get it to stay in at the median point though and got the test. Luckily the company said they would accept it on one side or else I would have been out of the study before it even really got going! This was also with the 3rd catheter they tried! My sinuses have been burning since then. I've had NPDs before and they weren't nearly this bad, so don't let my horror story keep you from doing it.

The doctor came in for a quick exam and then I had PFTs, which we all know is a pulmonary function test. Mine were right at baseline in the mid 50s.

After lunch the nurse showed me the phone I'll be using to keep a diary of my symptoms. I have to do it every night while on the study (a year!) but it just takes a few minutes. I did a test run while I was there. It asks about my activity levels, cough, and appetite mostly. It has an alarm that goes off every day to remind me to do my diary. For every day I do my diary I get a point, my points add up and I get to redeem them for gift cards! Sweet! The phone they give me is pretty cool, too bad I don't get to keep it and they have most of the functions disabled.

Then I had a sweat chloride test. I haven't had one of these since I was a baby so I don't know what the process was back then, but these days its pretty cool. First they put a couple of electrodes on my arm that activate my sweat glands. Those stay on a for a few minutes and then they put a little collector on there. It collects my sweat, then when there is enough they draw it out and put it into a little vial to be sent off and tested.

Next was radiology! I had a chest CT and a renal ultrasound. Good news, I have lungs and kidneys! When I got back up to my room I got hooked up to a vest thing that recourds my coughing. The vest part isn't too bad, it looks like a workout shirt, but it hold all the wires that run from a collar with a microphone on it to the actual little device that does the recording. Then I have to carry that around in fanny pack. This really is kind of a pain. I have to wear this thing for 24 hours which means I get to sleep in it. They gave me a pillow with a pocket in it for when I sleep so I won't roll over onto a hard plastic lump. I can take it off to use my vest though.

You might be wondering why this study is SO intensive. I mean, why a sweat chloride test and an NPD when they already know I have CF? This is what the doctor told me. The company wants to get this drug through the FDA. This drug shows a huge amount of promise for the 900 or so people on the ENTIRE planet that have one of the nonsense mutations. They are looking for ANY positive changes in ANY of these tests to take to the FDA to push it through. If my sweat chloride number goes down it could mean the drug works (assuming I get the actual drug, not the placebo). If my CT improves the drug could be working. This company is trying hard to push a drug through that they will make very little money off of. 900 people is not a very big market after all.

Been busy!

2010-04-11T18:53:00.000-07:00

You'll have to exuse my lack of posting lately. I've been so busy moving in with J, and this past week I haven't felt very good. Nothing too bad, just off. I had a bit of a sore throat and some post nasal drip for a few days. Thankfully that went away! Then yesterday I had a horrible stomache ache! I really think I was on the verge of a bowel obstruction. But I took a lot of Miralax and it seems to have done the trick. I feel MUCH better today.

Today was pretty nice so we took the little one to the zoo. That was fun. I LOVE the zoo. A lot of the animals were out and about.

I'm looking forward to my trip to Boston and meeting so many of my CF-world friends!

Inspiration.

2010-03-30T20:23:00.000-07:00

Inspiration can come is so many ways. But the biggest inspiration in my life is Eva Markvoort. A little history: Eva had CF and lived in Vancouver, BC Canada. At the age of 23 she recieved a double lung transplant. During the process, the waiting, the surgery, the recovery, and post tx life she was the subject of a documentary called 65 Red Roses. She also has a blog with the same name that is followed by thousands of people across the world. In October of last year I got to go to BC with my friend and see the film and also meet Eva. She is the first post-tx CFer that I have met. At that time she had recently been diagnosed with chronic rejection. She had to use oxygen frequently and had moved back home. Shortly after that she was re-listed for a second double lung transplant.

I have followed her blog for a long time. It is so eloquent and her personality comes through loud and clear. I wish I was as good a writer. Eva passed away a few days ago. She had been in the hospital for about 2 months and was actually told a month ago that she only had a few days left to live. She held on for another month in desperate need of those new lungs. They didn't come in time for her. Tomorrow would have been her 26th birthday. She was 2 years younger than me.

Eva was the most alive person I've ever met. Even being so sick she was so passionate about life, love, her family....everything. How can it be that such a person is gone? How can it be that the fire she had has died? I never doubted that Eva would get her transplant because it was Eva! There are very few people on this earth as deserving as she was. I feel so priveledged to have called her my friend. I find myself crying for her sometimes because I just can't imagine the world without her. It hasn't set in yet, and I don't want it to. When that happens then it will be all that much more real. A part of me is glad that she can breathe now, and dance, and run. She is with all the others that have gone ahead. I hope she gave Jenn a big hug for me. She is watching over all of us who are still here. Part of me is comforted by that, by the fact that I have another Guardian. But a bigger part of me is selfish. I want her here, even sick at least she would be here. I could check her blog and read one of her magnificent poems. She could get those lungs and when she's recovered I could go visit her.

But that won't happen. I plan on going to her service when I find out when it is. I want to hug her family and tell them what she means to me. I want to cry with them and share with them. I want them to know that they are in my thoughts. I want to be with others who have been cut just as deep as me by this. I want my Eva.

Eva.

2010-03-27T17:33:00.000-07:00

Breathe easy now cyster.

Busy!

2010-03-24T19:11:00.000-07:00

Forgive me if I don't post much in the near future. I'm getting moved in with J so I am busy packing, moving stuff, and cleaning. We brought the cat over the other day and that has been an adventure. She hates new places to begin with, but to top it off there is another cat here so there is major friction on that front.

I brought all of my meds and supplies here last night so I don't have to do the treatment juggle. That will be nice. I took up 2 shelves in one of J's cabinets with all my meds, suppliments, and supplies. Plus there is the vest adorning the dining room now, and the nebulizer. I am slowly taking over this place!! Muahahaha! Just kidding!

Clinic

2010-03-17T10:28:00.000-07:00

So I had CF clinic on Monday. Everything went fine, same old stuff mostly. I have GOT to start getting some exersise though (I knew that already). But its so hard when you have chronic pain. I played with J's daughter on Saturday and have been paying for it ever since. Everything hurts. I see the pain specialist tomorrow so hopefully we get somewhere.

I got new perscriptions since a lot of mine expired. Hopefully I actually get them this time! I asked for a new perscription for hypertonic saline in January and they never sent it in.

A big sigh of relief.

2010-03-08T09:30:00.000-08:00

So Friday was my last day at work. I took a voluntary lay off so that I can FINALLY go on disability. The ball is already rolling on that, the CF legal hotline is going to help me with my application.

It was just getting to be too hard. I would drag myself out of bed, drag myself to work, drag through my shift for work, drag myself back home, flop on the couch, drag myself to bed, and start all over again. I was so tired all the time. I wasn't doing my treatments the way I should, I couldn't clean my apartment, the thought of doing laundry was too much. Now I don't have to worry about all that. I can just do what I need to do.

Great Strides!

2010-02-28T15:51:00.001-08:00

Visit my team's page! We (ok so far its just me) are called the Twisted Cysters!

I know many of you might have your own teams, or teams honoring you and that's awesome! But if you don't please spread the word and get everyone you know to donate! Even $5 helps!

Pain appointment.

2010-02-26T16:11:00.000-08:00

I finally had my pain clinic appointment today! 3 months of waiting. And I'm unsure about how it went. The down side is that the pain clinic at my hospital mostly just consults with other clinics, and I went there because I wasn't getting anywhere with rhuematology! Uhg! I got some information on a research study that the doc thinks would be good for me. And he's going to send me an email about research done on lyrica in high doses to see if I want to try that. I go back in 3 weeks, we'll see.

Spring comes to Seattle early....

2010-02-23T11:27:00.000-08:00

...and it makes me cough! I love spring, I really do. It warms up, the flowers start to pop, the sun is out. And the cherry trees start to blossom. I hate those things! They're gorgeous, but they make me miserable! I never quite know how its going to present itself. For years I'd get a sinus infection. Lately it makes me cough, a lot! Uhg!! Make those things quit!

Another friend is leaving.

2010-02-15T16:37:00.000-08:00

Over the weekend I got the news, through her blog, that Eva doesn't have much time left in this world. You may remember that Eva is the transplanted CFer who I met in October when the documentary about her (65_RedRoses) was shown at the Vancouver International Film Festival. She has been in chronic rejection since the end of last summer and waiting for a second transplant since October. Unfortunately that second transplant has not come, and now she is too sick.

Eva is the most alive person I have ever met. She is so happy and grateful for life, her family, and her friends. As saddened and heart broken as I am to hear this news, I am so happy to have had the chance to know her and be her friend. She broke the news in a video with her parents and sister. In it she has a smile on her face and she says that she is not sad about it. That's how she is, happy, bubbley, ALIVE.

I've been reflecting on this now for 3 days. And its just not fair. Her story wasn't supposed to end this way. I never had a doubt that Eva would get another transplant. I mean, its Eva we're talking about here! But now of course reality comes crashing down. People die every day waiting for organs. Please, become an organ donor! Its not enough to have it on yur drivers license either. ou need to tell your family, put it in your will, and register as an organ donor. Follow this link to find out how to register in your state. www.organdonor.gov/donor/registry.shtm

As of right now I do not know Eva's condition, but you can leave her and her family a message by visiting her blog at www.65redrose.blogspot.com

So while the world is focussed on Vancouver for the Olympics my heart and my thoughts are there with my friend and her family. All I can do is hope for a peaceful final journey for her, and whatever comfort can be had for her family. I love you cyster, give the others a hug for me when you get there.

Back to Baseline!

2010-02-10T16:19:00.000-08:00

Its been a crazy month so far! I haven't had to time to update like I should. Anyway, I finished up some oral antibiotics last week for a sinus infection and crackly left lung (you will remember that this is the lung I had pnuemonia in and I was crackly in the are where it collapsed so I did NOT want a repeat of that!!). I went in for post-abx PFTs and I blew a 56% FEV1!! I haven't had numbers that good since before the pnuemonia!!! So it took 6 months but I clawed my way back to baseline. So I would like to express my appreciation for modern medicine, antibiotics, the vest, hypertonic saline, and everything else that keeps me ticking!

In other news my general pain has been pretty bad. I have no energy. But I only have 2 more weeks until I go to the pain clinic and hopefully they can do something for me. I started a journal about my pain, where it is, how bad it is, what I do for it etc, on a daily basis so that I can take it to show them. I am also coming armed with a list of questions and things that I would like to try based on research I've done and things other people with fibromyalgia have told me. So I will be fully prepared to attack them with all of that! They can't accuse me of sitting idly by and doing nothing these months that I've been waiting for this appointment!

My new dude.

2010-02-04T15:50:00.000-08:00

So, I am seeing this new guy, J (won't use his name without his permission) and so far everything is good. Its only been a couple of weeks but I really like him. In two weeks I already know where I stand with him (unlike after 2 years with D I had no clue) because he isn't afraid to say so. No, he hasn't said the L word, but he does tell me I'm cute, and beautiful. He tells me he misses me, and that I make him feel good.

I suppose I should give some vital stats about this guy. He's 32, with 2 kids (his son actually isn't his biologically but he has custody because his mom bipolar and gets unstable) his son is 11, daughter is 2 1/2 and totally adorable! He is an installer at Car Toys (think car stereos, alarms, TVs, etc), and he's a Libra like me! Our birthdays are 3 days apart.

Anyway, I really like him. I think he's one of the most handsome men I've dated for sure, so that helps! I don't mind at all that he has kids, in fact its great! Since I decided that for my health I won't be having kids I can borrow his! Oh, and he cooks! And what he cooks is not only edible its really good!!

He also took it upon himself to research CF. I think he's the first guy I've dated that has done that. So he knows how ugly this disease is and he still wants to be with me!!

Kiki!

2010-01-29T16:08:00.001-08:00

This is Kiki. I got her from a guy on the USS Lincoln which will be gone most of the year, so he couldn't keep her. She is almost blind and when I heard that she might go to a shelter I snatched her up! A shelter would just put her down since she is disabled and no one would adopt her. She is a lovely, sweet kitty so I couldn't let that happen.

Port drama

2010-01-28T16:42:00.000-08:00

So on Monday I went to have my port flushed. The nurse and I swore she that she was in but we couldn't get a blood return. So, I called UW and they got me in to see the PICC/port nurse today. She could flush it, and I could taste the saline so she was definately in. She flushed me with heparin really good and let me marinate for 20 minutes. Still no blood return. So on to TPA. You may recall from August that I had to have my last PICC TPA'd. Its an enzyme that dissolves clots. The nurse thinks that my last antibiotic clogged it up. Well, that had to sit for 2 hours so I went and ate and worked on my latest knitting project. And when I went back we got blood!!! Yay!! So I am back in business.

Bleh!!

2010-01-21T14:33:00.000-08:00

Sinus infection. Crakly left lung. Antibiotic. Insomnia. Can I be done now?

New Hair Do.

2010-01-17T15:26:00.001-08:00

As a fellow Raveler put it, I got a revenge make over. There's nothing like looking in the mirror, seeing that you are in fact, pretty, and knowing that your ex fucked it all away and that's HIS problem. So this is my new hair. I like it, she did a good job on it. I might even go shorter. I've always liked my hair on the short side anyway. Its so fine that when it gets long its just weighed down and limp. This is better, it has some oomf!! And everyone likes it!

I'm doing ok I guess. I still have some depressed moments where I miss him. But not all the time, and much less than at first. I actually have a date tonight. I'm not sure if I'm really ready for it, but I have to get back out there sooner or later. I just hate dating. I like to be in a relationship. I like knowing that that special other person is a phone call away for any reason. And I guess its comforting to know that if I get sick someone will come and help me.

Its over.

2010-01-12T12:25:00.000-08:00

So D and I are done. He didn't even have the balls to call me, he sent me an email. In a nut shell he said he was sorry for not being able to tell me how he feels, its one of his biggest faults and he's working on it with his councilor. He also said he's not ready for me to follow him somewhere. So that was it. I sent him an email back saying that I hope he finds what he's looking for and that I hope he has enough respect for the next woman to act like an adult and tell her how he feels.

I'm pissed, I'm hurt. I feel like the last 2 years was a waist. He still never even told me what I was to him. I guess I kind of knew all along that I loved him more than he did me, if he even loved me at all. But that doesn't make it any easier. I feel stupid. I guess its asking a lot to have someone feel the same way about me as I do about them. I can't seem to get on the same wavelength with anyone.

Part of me wants to start dating right away, but then I know that right now I'm not in a good place for that. I know it wouldn't be fair for me to start seeing someone just so I could make myself feel better about being me. What if Mr. Right gets away because I'm not ready to love him yet? Besides, right now I can't imagine myself with anyone else. I don't think that I could be with D even he had a sudden change of heart, but I can't be with anyone else yet either.

Questions, and no answers.

2010-01-09T16:04:00.000-08:00

So last night on facebook chat D got to talking about getting new orders in a couple of months and probably moving out of state. It sounds like there's a good chance he'll get San Diego. So I asked him what happens to us then. He said he doesn't know. He's given it some thought but hasn't come to any conclusions. We've been together for 2 years and he doesn't know what he wants to happen if he moves away. I was pretty upset by this. Then he changed the subject (later he said that he hadn't meant to, pffft).

After a few minutes of random conversation I said that after his nonanswer I was going to go because I wasn't in the mood to talk to him. He said he was sorry and that he knew I was pissed. We talked about it a little more before I said that I am sick of being the quiet girlfriend that doesn't ask about these things, I'm sick of only seeing him once a week, and that I am really fucking sick of not having any clue how he feels about me. After a LONG silence he said that he was confused and doesn't know how he feels about anything. So I told him to call me when he figures it out. Then he signed off.

So I have even more questions than when the whole thing started. I still have no idea if I've just been someone to fuck or if he's madly in love with me. Although I seriously doubt the latter. If he loved me, really loved me, then none of this would be an issue. I had hopes though, stupid hopes. He used to tell me how much he missed while he was gone. He bought me a nice watch, a diamond tennis bracelette, and a new computer. None of which had to be cheap. Not to mention he drives an hour and a half almost every weekend so we can see each other. So I suppose I fall somewhere between "sex toy" and "soul mate". But where?

And even if he does come to the conclusion that I am his soul mate am I so sure that I still want to be his? I mean, I love him, this wouldn't hurt so bad if I didn't. But after this could I really find it in me to take him back? Wouldn't I just keep thinking about it, and question him? Would I really ever be able to trust him with my heart again? More questions I don't have answers for.

And another thing. Why does stuff like this always seem to happen to me? Either I'm with someone who's madly in love with me but I don't feel the same, or the other way around. Can't I just find a guy who is wild about me and I'm wild about him?

In conclusion: I'm pissed off and mystified, not a good combination.

Sensored.

2010-01-07T17:41:00.000-08:00

So on Monday I went to the diabetes center to get this sensor. It checked my blood sugar every 3 minutes. I had to log every bit of food that went into my mouth and any drinks containing carbs and how much insulin I took. Then today I went back and got unhooked and they downloaded the data. It showed that at night my blood sugar almost doesn't change at all. The line on the graph was almost totally flat. This is good, it means I don't need a long acting insulin. It also showed that I could use another unit or two of insulin in the morning. My nurse practitioner said that I might be a tad more insulin resistant in the morning from having all the waking up hormones pumping into my system. She said that over all though I do a good job of knowing how much insulin to take for what I eat. So as of right now just add another unit with breakfast, two if I eat more than usual. I go back in April.

My awesome Christmas presents!

2010-01-05T20:07:00.000-08:00

So I got my presents from D late because the place he ordered them from was lazy. So we had Christmas on New Years Day! I got him a new DVD player because he had this old clunky DVD/VCR combo that was really touchy with the DVDs. But he wouldn't replace it because he had a copy of Pulp Fiction on VHS and its his favorite movie. So I also got him a copy of the collectors edition of Pulp Fiction on DVD. Then I got him a t-shirt with a hoopty ride and a couple gnomes. It said Ridin with my gnomies on it. He's into gnomes.

He got me a cooking tutor for my Nintendo DS! Its very cool, I can make shopping lists on it based on the recipes, exlude things I don't like, and there are TONS of recipes on it! And, best of all; he got me a new Toshiba laptop!! My old one had been rebuilt and given to me. While I really appreciate that from the friend who gave it to me, it was old and slow. So this is so awesome!! I can actually stream video now! Yay! Thanks babe!

2009

2010-01-03T20:36:00.000-08:00

Since we're saying good-bye to 2009 I thought I would take a few minutes to reflect on the year. And unfortunately its the bad stuff that seems to stand out. There were too many deaths for starters. D's sister, B's mom, Jenn, Courtney, Ginger, Paul, and Mel. The last 4 in the last 6 weeks of the year. Then of course D was deployed again, and that was just as hard if not harder than the 2008 deployment. I was diagnosed with CFRD. My fibromyalgia has been out of control most of the year. I had my first hospitalization for anything CF related, and it was a whopper. You may remember the partially collapsed lung causing me horrible pain. And my cat dissappeared. So with all this stuff hanging over the year, lets talk about the good, even if it was small.

I got my new teeth!! YAY! I had sinus surgery (I know that seems like a bad, and it did suck) and now I can breathe through my nose and I get results from sinus rinses!! D came home!! I got my CF tattoo that I'd been dreaming of for years. I got my port, no more PICCs for me! I got back into knitting and crocheting. I got to hang out with my friend Tally for a weekend before she moved. On that trip I got to see 65_RedRoses and meet Eva. I made a trip to the CF center in Denver. I bought my first digital camera! I got oxygen after 13 months of fighting with my CF doctors. I found a new primary doctor that I love. I taught myself to knit socks. I went to a ZZ Top concert.

So there 2009! You threw a lot at me. But I'm no worse for it. In fact I'm better. I was reminded of how important my friends and family are, and I told them so. And as much as I miss those who passed away, I know that they are watching out for me. So I came out on top once again. 2010 will bring new challenges and heart aches, but I can handle it. With the love and support of my family, my friends, and my cysters I can handle anything.

Post sinus surgery.

2009-12-21T14:44:00.000-08:00

Let's talk about snot for my 100th post, what do ya say!?

Seriously, since I got the splints out things have been really good. My septum isn't nearly as sore as it was, just a little bit. Sinus rinses are whole new experience for me. I wasn't very good about doing them before because I never really got good results. But now whenever I do it, the good just kinda comes out almost on its own! The first couple of times after getting the splints out I got some clots, but nothing too horrible. Now its slime, but I don't even have to blow hard to get it out. I just kind of exhale through my nose to get the water out and this stuff comes with it. Its great!! I think the water is able to flow through my sinuses the way its supposed to now so the rinses are actually working! YAY!

I can tell I'm moving air better too. I can sit for long periods of time breathing through my nose and I don't feel short of breath at all. So, as miserable as I was the week after the surgery I am glad that I did it. I do hope I never have to do it again....but I would if I had to.

"Never say never" by the Fray.

2009-12-18T15:03:00.000-08:00

Click on the title of this entry to listen to the song.

Ok, not that I'm planning on going anywhere, but with 4 friends dying lately this song has taken on a lot of meaning for me. A lot of it applies to my relationship with my cysters. We made a pact, no one goes anywhere! I really like the part "I will be your guardian when all is crumbling." That's how we are with each other. When something bad happens to one of us, the others lift her up and she doesn't feel alone. And even when one is gone, they aren't really. We still remember them, love them, and we know we'll see them again. I also like "We're falling apart and coming together again and again and again." I love you guys!!

Sinus surgery.

2009-12-17T18:09:00.000-08:00

Here we are, one week out of surgery. I haven't felt like blogging much, appologies.

Anyway, my dad came to take me to the surgery and help me out (hurray for dad!). We got up way before the ass crack of dawn on Friday to go to the hospital. Got checked in and went back to pre-op. I got changed, peed in a cup for a pregnancy test, and got asked about 4000 questions. They stuck a nausea patch on me, and that was great!! I left it on for 3 days and never once got nauseaus! I am asking for that again if I ever need another surgery. It was also really nice to have my port! NO IV!!

I woke up and my lungs were pretty rattley, but the stuff was nice and thin (thank you antibiotics) and easy to move. I had an oxygen mask on, which is good, I always drop my sats when I'm out for surgery. I had splints in each nostril so my nose felt really packed and dry, not painful but uncomfortable. After they made sure I was doing ok and I went to the bathroom I was able to go home. Dad and I were home by noon, he called mom to tell her everything went fine. I parked in my comfy chair and dozed for a bit. I had a little bit of bleeding, but not too bad.

For the week nothing special happened. I would rinse my sinuses several times a day. I felt pretty crappy though. I couldn't breathe through my nose, smell anything, could hardly taste anything, my nose was constantly drippy, and I slept like crap because I had to breathe through my nose and my mouth would get SO dry. It was pretty miserable. But today I went and the splints taken out. That was horrible. They were held in with a stitch in my septum and it hurt like hell when the doctor cut it and pulled it out. Then he started yanking on these things. OUCH! I made the mistake of opening my eyes right when the first one came out. It was HUGE and covered with snot. Way gross. Then he pulled the other one out, suctioned my nose, and started telling me what to do for the next week or so. Then I started to feel like I was going to pass out. Very nauseaus, dizzy, and sweating like a pig. The doc laid me back, got me a cool towel and a drink of water. I was there for about 20 minutes and most of it was me trying not to pass out. So that SUCKED.

I do feel MUCH better now though. I can breathe through my nose, smell, eating is a lot more fun. I took a nap when I got home and didn't wake up with my mouth dried out!!! It felt so good to sleep good for 4 hours! Overall I guess I'm glad I did the surgery because I am moving more air through my nose, but I really hope I never need another sinus surgery!

Sinus surgery.

2009-12-11T17:56:00.000-08:00

My surgery went fine today! I got home around noon (YAY) and parked my butt in my super comfy chair. I took a nap for a little bit and I've eaten some, and drank lots. I had a little bit of bleeding but its stopped now. The pain isn't bad, mostly it just feels like huge boogers in my nose. I've been taking half a percocet and then it feels better. I have some tubes in my nose so that I can use my oxygen. Last but not least, my dad is here to take of me.

I feel.....

2009-12-06T14:54:00.000-08:00

....defeated. Exuse the lack of posts lately. Two more CFers have passed. And I just haven't been able to bring myself to talk about it yet. Ginger had H1N1. It looked like she was getting better too. I haven't even heard the details of what happened in her last few days. Paul had a transplant but with lots of complications. He got a few months where he felt pretty good, but then started to decline.

Now another friend isn't doing well. She's bi-pap pretty much all the time. Has serious back pain that they can't seem to figure out. My friend is hurting, and I'm scared for her. Prayers, well wishes, good vibes, or whatever, would be appreciated.

Port, Courtney, Thanksgiving

2009-11-28T19:06:00.000-08:00

So I got my port successfully flushed on Wednesday. This was the same nurse that did it the first time. She got it in one shot! You could still see the marks where the other chick had tried 3 times so I had her check it out and then feel where they were. She said that it was right over the edge!!! That's what I told the other chick!! She didn't want to listen. But at least it got done.

Courtney passed away earlier this week. Even though I knew it was coming it was still hard. I sobbed while reading the blog her family had for her. Her dad came to get her, he passed 8 years ago. It sounds like it was very peaceful. She's not in pain anymore. She's dancing and running and having all the adventures that her CF body kept her from having while she was here. She's with loved one who have gone ahead. I'll miss her so much, but I'm glad that she is free.

I cooked a big Thanksgiving dinner for me, D, B, N, and my brother, K. It was a good day. D liked my cooking, which made me happy. Everyone got sent home with leftovers. I started having a migraine around dessert time. It got pretty bad by the time I went to bed. I can't take any anti-inflamatories before my surgery which means no Excedrine Migraine. Only Tylenol which doesn't do squat. I took an Imitrex before bed and hoped that would help. I woke up around 11:30 and seriously considered dropping dead because at that moment it would have been better than that. It felt like my skull was going to explode. I got up, almost passed out in the process, and got a vicodine. I took that and went back to bed. If it hadn't worked I was going to wake D up and go to the ER. But I fell back to sleep and woke up for work. I still kind of had the headache but not as bad so I took 2 more Imitrex to keep it from blowing up again. I kept having to take it every few hours and almost maxed out on it for that 24 hours. But FINALLY it went away. I haven't had one that brutal in a LONG time! But all is better now.

Cysters and fiBros

2009-11-24T00:04:00.000-08:00

Some times people wonder how it is that I can be so close to the CFers that hang out in the CF2 chat room when I've never met most of them. Well, I'll try to explain:

I love D with all my heart, and I hope he loves me just as much. B and N are my two bestest friends and I appreciate all that they do for me. They take me to or pick me up from doctor's appointments, take me grocery shopping, and do a million other little things that for a CFer are not little things (ever try to drag around a full basket of laundry with 55% lung function?). But the simple fact of the matter is that no matter how much I love these people or how close we are, they don't know how CF makes me feel. Emotionally, mentally, physically. And my Cysters and fiBros do. They know what I mean when I say I think I'm having an attack of pluerisy. When I say I feel tight they know what I'm talking about.

CF has to be one of the more brutal diseases out there. Not that things like cancer, ALS, and MS aren't horrible. But people with those diseases don't usually have to deal with it for their entire life! CF is always there, even if you are a late diagnosis you've typically had problems you're entire life, you just didn't know why. The average life expectancy for a CFer is about 37 years these days. So imagine 37 years of your body very slowly failing. Imagine how you feel when you have a chest cold, now imagine that you felt that way every day. And that's how I feel on a good day. When I'm sick breathing is hard work. I have to think about every breath I take.

My days are taken up with the things that most people do everyday (work, cleaning, cooking, running errands) but also with several hours of treatments. Inhaled medications, vest, percussor, coughing so hard I think I might pass out. Pills, handfuls of them. Insulin injections, blood sugar readings. There is not a room in my apartment free of medical perifanalia. Even my closets have supplies in them, and my fridge is stocked with meds that have to be kept cold.

My fellow CFers understand this life I lead. They understand what its like to try and have a normal social life in the midst of it all. And they get how hard it is to hold down a job, and what its like to fantasize about going on disability at the age of 28 (or younger in some cases). In the chat room no topic is sacred. On an almost daily basis you can see conversations that include the follow subjects: snot, puss, yeast, blood, mucus, and other bodily fluid, poop, medications, sex, rants about a dumb nurse or doctor, black humor, death, and many more. To not have to explain all the little details of my daily life is very refreshing.

So all of this is why I can be so close to them. Why I worry about them. And why I cry when one of them dies. Its really no different than any other support group, we just can't always meet face to face. I have a long list of CFers I would like to meet in "real life" and I know that some of them will probably die before that gets to happen. Some already have, some are very close to that now. Like Courtney. She has chosen to "go home to God" as she puts it. Courtney has been through more than anyone should ever have to in the last 6 months. She is tired of hurting, tired of being sick, tired of the hospital, and just plain tired. She is being made comfortable now, and that is a comfort to me. I don't want her final journey to be a painful one. I understand and respect her decision, and admire her for making this choice. It could not have been an easy one. But of course I will miss her.

So D, B, N, know that I love you all. But if I get frustrated at having to explain my CF life, or just don't tell you something at all, know that its not because I'm hiding anything, know that I'm just tired that day.

And everyone reading this, please say a prayer (or whatever your thing is) for Courtney to be at peace in her last few days, and for her family to be at peace with her decision (although I think they are). We are losing a Cyster, but gaining a Guardian.

The botched port flush!

2009-11-21T17:24:00.000-08:00

So yesterday I went to get my port flushed. First off I was waiting for 20 minutes after my appointment time before the nurse finally showed up. She didn't bother to call or anything. When she finally go there I didn't get a good feeling about her. I'm not exactly sure why, maybe it had something to do with the fact that she looked like she never made it out of the 80s. Anyway, she finally gets there and we go back to the room in the infusion clinic that my home infusion company uses at the local hospital.

She got the lidocaine in and then got set up while that went to work. Then she missed.....ok, the last nurse missed the first time too, not a big deal. So she gets the other needle, and has me lay down this time. And she missed. Really?? While she went and got yet another needle I looked at where she was jabbing me, and I kid you not both spot are right over the outside edge of my port! I told her when she came back that I thought she was too far to the right. She blows me off. Now at this point I should have made her let me try, but I've never done this before and only seen it done one other time so I was not overly confident in my abilities. She misses. At this point she says she's not going to try any more. I said "No you sure aren't! Not now or ever!"

This woman is NEVER touching me again. The nurse who did it last time is supposed to contact me to set up a time to do it in the next couple of days. I swear I'm going to get a target tattooed over the damn thing!

The ball is rolling.

2009-11-17T15:25:00.000-08:00

I spoke with the CF clinic nurse today about starting IVs before the nose job. That's what I'm calling the surgery to fix my deviated septum. Nose job. I don't do well with anesthesia, my lungs don't like it. If I don't do IVs first I'll feel like crap for weeks afterward. Even with the IVs I'll probably drop my sats during surgery and for sure coming out of the anesthesia. I'll forget to breathe and set off the the alarm on my pulse ox. That happened after my shoulder surgery. The ENT has reserved a bed for me at the hospital just in case I need it. I don't think I will, but I'm glad they're playing it safe.

I'm kind of having one of those days where I really resent my CF. A minor surgery is a 3 week odessey of planning and medication. It requires my third round of IVs this year, and half the hospital getting coordinated to make it happen. It seems like not a week goes by that I don't have some doctor's appointment. I rotate between the CF clinic, cardiology, endo, PCP, and rhuematology. Throw in a visit or two to the walk in clinic and that's my routine. And I get so sick of it.

I think a lot of this has to do with the fact that my pain has been out of control lately. Chronic pain is so depressing and exhausting! There may not be something particularly "wrong" with you, but you hurt.....all.....the.....time! It gets old fast. I'm not even sure why I keep taking my lyrica. I guess I'm scared that it will get even worse if I stop. And I can hardly imagine what worse would be like. I can barely function as it is!

Some good news, but another surgey in my future.

2009-11-12T15:22:00.000-08:00

So, I had my ENT appointments today (nose and ears). First the nose; I don't have any polyps or impacted goo in there, so that's good! However, my septum has a lovely deviation on the right side. Its obstructing things enough that I am not moving much air on that side. So it could exlain some of the shortness of breath and certainly why I wake up every morning with my mouth hanging open and all dried out. I doubt that I'm getting as much benefit out of my oxygen as I could becuase of this. So, I am electing to have the septoplasty to fix it. Its probably going to be on December 11th, as long as that is doable with work. I really wish I could make it a whole year without some kind of surgery!!

I plan on doing a round of antibiotics before the surgery. I'm debating on IVs or orals. I'll probably go for IVs though. They clear me out much better. I imagine that I won't feel like doing any hard core airway clearance right after this. So I should go into it as clear as possible.

Next was ears. This took forever, I was getting really irritated. I swear I spent more time waiting than actiually getting my hearing test and talking with the doc. Anyway...I have very minor hearing loss in the upper frequencies, no big deal. Its causing the tinnitus (ringing in the ears). He explained that its kind of like the phantom pains that amputees get. Except its fantom sounds. If anything changes I'll need to go back, but otherwise I'm good!

HE'S HOME!!!!

2009-11-07T13:25:00.000-08:00

D is home! When I got off work yesterday I had a text message from him that said he was in New Hampshire. Then when I was getting ready for bed I got another one that said he had just landed at the base! I just talked to him on the phone and he's on his way here. These last six months have been hard but this last hour or so is probably the hardest of all!

I know he's close, closer than he's been for half a year. I have butterflies in my stomach. I know I shouldn't, we've been together for almost 2 years, but when you've been apart for so long its almost like meeting for the first time all over again. I did my makeup because I want to be pretty for him. I'm wearing the watch and the bracelette he gave me. I have his favorite coffee, I made a big pot of soup. I'm doing all this so that he knows I've missed him, thought of him everyday, and want him to feel some normalcy.

In other news, I was able to get a swine flu shot this morning!!! YAY. Now only about 2 weeks to be hyper-paranoid of every sneeze and cough within 20 feet of me.

The swine flu.

2009-11-02T20:57:00.000-08:00

As I try to find my own way of dealing with becoming a "typical" CFer (repeated IVs, hospitalization, ENT appointments, CFRD, getting a port, and all of this in the last year!) now something new comes along for me to be afraid of. Swine flu. Its killing us. It already got 1 CFer that I know of, 2 more are not doing well. We try and try, hours of treatments every day, countless doctor appointments, stuffing food down our throats, bathing in hand sanetizer, and this virus comes along and railroads us. A mutation, that's all it is. And its killing us. Its killing us because the CDC can't get the vaccine to us. How is it that CF clinics all across the country are not getting it!? We are ultra-high risk for this and we can't find a fucking flu shot to literally save our lives!! Are you kidding me?

Of course I want everyone who needs the shot to get it. But my friends are on their death beds! Hello?? CDC?? Anyone home!? GET ME AND MY FRIENDS OUR FUCKING SWINE FLU SHOTS YESTERDAY!!

Sick of hurting.

2009-11-01T15:48:00.000-08:00

I am so tired of hurting all the time. Its so exhausting, and depressing, and dibilitating. The other day I had big plans to clean my apartments, top to bottom, vacuum, the works. I didn't even get half of it done. And I kept having to sit down and take a break. Finally I just gave up, and I've been doing a little bit each day. I have to take half a vicodin to get through work. This is jus not ok. I am going to call my PCP and see if she'll refer to me to a pain specialist. This gets SO old.

He's coming home!!

2009-10-25T20:55:00.000-07:00

D should be home some time next week! I can hardly contain myself, I am SO excited. He really is an amazing man. He's so good to me, and good for me. He talks with me, and listens to what I have to say. He makes me laugh, and I'm not afraid to share the bad things with him. And he shares the bad things with me. I really love him, in a way I never thought I would love anyone. He makes me feel safe. And I guess in the end that's what we're all looking for right? Someone who will be there when you need them, and do their best to make it better.

When we're together I can forget about whatever drama may have happened at work, what my future with CF looks like, and I have less pain. The rest of the world goes away and its just us. We watch a movie, eat dinner, cuddle, and......other things. Haha! I guess I'm saying that we're on the same wavelength. We're very in tune with each other. And I miss him. I can't wait to see him!

The women of CF.

2009-10-21T19:28:00.000-07:00

So I've had this idea banging around in my head for years. I want to do a Women of CF calendar. I want it to be what would normally be a calendar of semi-naked women in various suggestive poses, except wearing vests, showing accessed ports, PICCs, g-tubes, the classic CF "baby" belly, transplant scars.....etc and so on. I would want the pictures to be professional quality. And think themes too, Christmas, Halloween, Easter.....you get the idea. So what do you think ladies? Would you be willing to help me out with this? I am thinking of having one picture for each day of the year. I'm not too particular about them being in color or black and white, just as long as CF and your various devices are well displayed.

I would also love any help you could offer in the way of raising funds to get the thing printed. How to go about getting someone to print it. And writing a legal release form for the use of the pictures. Obviously the funds raised from the sale of the calendar would go to CF.

Port Flush

2009-10-20T20:29:00.000-07:00

So I had my port flushed for the first time today!! It was interesting. It all started with my bus not showing up, so I had to walk about a quarter mile to catch a different one and was going to be seriously late! So I called the infusion company to let them know all this......well it turns out that the lady I made my appointment with never actually put it in the computer. So they squeezed me in. I had some issues with them the last time I did IVs, so I may ask to switch companies. The only problem with that is that I LOVE this one nurse. She is so nice, she comes in to work and always asks how I am. She offered to show me how to access my port. She took my tempurature on Sunday when I felt like crap from this weird foot thing.

Anyway!!! So I get there and the get me all set up. Swabbed me down with anticeptic and stabbed me with a huge needle! And she missed! Uhg! So she pulled that one out, I held some gauze on it while she went to get another needle. She came back and we started again. This time it felt like she drove a nail into my chest! I swear I almost hit the ceiling. The first one wasn't bad at all, the second one was horrible! I somehow managed to not jump off the chair though. At least she got it that time. They never sent me any lidocaine so she said she would put in a request for that for me. Now you guys know that I'm no wimp when it comes to needles, hell I give myself 3 or 4 shots a day! But I am going to wimp out next time and use the lidocaine.

I'm still glad that I have my port. I know that its going to make my life MUCH easier when its IV time. The pain didn't last that long, so anyone out there who is thinking about a port I would still encourage you to get one. Just ask for some lidocaine for your flushes! I just want to be honest in my posts. Life isn't all sunshine and roses and I'm not going to pretend it is.

Updates and randoms

2009-10-19T21:04:00.000-07:00

Hmmm. So I've been working lots. Very tired. I got what is probably a spider bite on my foot. This does not make work easier AT ALL! I have been limping around for 3 days. My foot is all gross and red and swollen. Like this.

I drew the line around it so I could see if the redness was spreading. I'm pretty sure I had a fever yesterday. I was either freezing or roasting all day. I felt like total shit. I was sea sick too. Dry heaves and everything. All I ate all day was maybe 2 handfuls of pretzels, 5 bites of a frozen dinner, and a 7up. Hurray for 7up! Nothing better for a distraut tummy. And enough sugar so that I didn't have a massive crash of the old blood sugar. I slept FOREVER. I got some antibiotics at the walk in clinic just in case this is some kind of infection.

D should be home in about 2 weeks!! I can't wait to see him! Its been almost 6 months. Can you believe that? I miss him SO much. So much has happened! I got my new teeth. I had my first admission for CF. When I was in the hospital and in pain, and sleep deprived, and just miserable I would have given anything to have him there. Having him crawl in the bed next to me with his arm around me would have been so comforting. He told me that he wished he could be there for me and that really touched me. It gives me confidence in his ability to handle me and all my issues.

Fall is in full swing!

Gorgeous huh?? I love fall. Its all sweaters, boots, pumpkins, hot apple cider, Halloween, Thanksgiving, snuggling, and the trees! Such pretty colors. I wish the leaves didn't have to fall off.

I'm having my port flushed for the first time tomorrow. Stay tuned for a post about that!

65_RedRoses in Vancouver, BC

2009-10-11T16:44:00.000-07:00

This one speaks for itself.
Eva with the directors of 65_RedRoses.

Me, Eva, and T. One our friends is in the hospital and her birthday was the day of the movie so we got this shot for her.

This sign was outside of the restaurant and brewery where we had lunch on Saturday. T had some yummy lobster ravioli and I had tasty fish and chips!

A view from the water front.

What an amazing weekend! My friend T invited me last month to the premier of 65_RedRose ( http://www.65redroses.com/ ), a documentary about her friend Eva and her journey through transplant. I of course said I would go! I got my passport, a new dress, and was ready to go!

We went to BC on Friday. She picked me up on her way from Eugene, OR. We got asked about a million questions at the border. I'm still trying to figure out what T working or not working has to do with us going to Canada. Same for Eva. So they finally let us through and we headed for Vancouver! We found our hotel, wresteled our luggage up on a luggage cart. You'd be suprised how much crap a CFer requires for a 2 night stay. Once we got some what settled in the room we hopped online and into the chat room. Many of the CFers that go to chat regularly were quite jealous that T and I got to be there. Pretty soon we went in search of dinner. We quickley discovered that the only things available in that neighborhood at that time was sushi and pizza. So we picked a sushi place that looked good and stuffed ourselves.

We slept in on Saturday and took our time getting ready to head out and explore the city. We did a little shopping, I added to my shot glass collection! After lunch we headed back to the hotel so that we could rest up a bit before we headed to the movie and then the after party. We were both so excited to get dressed up. And I was so looking forward to meeting Eva!

FINALLY it was time to get ready and head out. The theater was only a few blocks from the hotel so we walked. Unfortunately I was having issues with my shoes. The strap wanted to come off of me heal. But eventually we made it. We were a little early and they weren't seating for out showing yet so we waited in line. Then they started seating and I was SO excited.

I don't want to reveal too much about the film but I will say that I thought it was wonderful! I laughed, and I cried quite a bit. The directors didn't hide anything. They showed the moments when Eva was hurting, sick, frustrated, and angry. They didn't portray transplant as cure, because its not. The film was raw and honest and that's what I loved about it. Eva is such a beautiful person and so full of life. Her and her family are letting strangers into their lives with this film and I thank them for that. Anything that raises awareness for CF and organ transplantation is a good thing. Eva is an amazing woman and an inspiration and I personally would like to thank her and her family for their willingness to do this project.

A BC transplant organization was there to register people to become donors. As T and I were leaving the theater we saw so many people filling out the donor cards. It really touched us. This film inspired all these people to literally give themselves to others should they die. One day they may save someone's life and that is such an amazing thing. Please support organ donation, tell your family that you want to donate your organs. Something good really can come from a tragedy.

After the movie was a party at a bar across the street. I was honored to be able to speak with Eva and her family. I was able to thank the directors for making the film. I met some of Eva's friends who are just as in awe of her as I am. She really is full of life. She was suprised at how many people came to see the film and then wanted to talk to her. I have to say that I had a fabulous time.

We were getting tired around midnight and decided to take a cab back to the hotel. We relaxed a bit, got on our computers, but before too long we were asleep. This morning we packed up all of our stuff and headed home. Thanks to T for inviting me, I had a great time!

We're storming Canada!!

2009-10-09T12:41:00.000-07:00

My friend T is on her way from Oregon to pick me up, then a few hours later we'll be in Canada! Its a full on cyster invation. She invited me to come with her to see 65_RedRoses, a documentary about her friend E with CF and her journey through the transplant process. I'm looking forward to meeting E too. I've never met a transplanted cyster in person before! I also can't wait to check out Vancouver more. I've been there a couple of times but just for a few hours at a time. I've never gotten to really check out the city. I'll have updates about the trip in a couple of days or so.

Remember, support CF research, and become an organ donor!

Busy busy!

2009-10-05T20:54:00.000-07:00

Wow so I've been busy lately!! I had my birthday last week, happy 28th to me! I've been working of course. This past weekend I had my birthday dinner. My best friend and I are a week apart so we decided on dinner at Ipanema on the weekend between our birthdays. Ipanema is a Brazillian style grill where your side dishes are all buffet style and guys come around to your table with huge skewers of roasted meats. Everything from steak to wild boar! Its yummy!!

D should be home in about a month! I can hardly believe 5 months have gone by. This time was easier than last time. Its not that I miss him less, its just that I knew what to expect. And I knew that I could handle it.

The port.

2009-09-23T15:53:00.000-07:00

I'm ported!! I got my port put in yesterday with no issues at all. I checked in at 10:00 am and they asked me about 600 questions about my medical history and meds and you name it. All that crap is in my chart but they feel better knowing they asked me THAT day. I must have been asked a dozen times if the thing was going to remain accessed, and answered a dozen times NO.

They got my IV going and took me back to the semi-operating room in radiology around 11:00. They cleaned my chest, I was blue from my ear to below my nipple. Pretty soon the nurse gave me some fentinal (sp?) and I watched the walls dance for a while. Then she loaded me up on versed and I had some weird dreams that I don't remember now. I vaguely remember them telling me they were going to give me lidocaine and it would sting, but I don't remember any stinging. I started to come out of it when they were finishing up and talking about whether or not they were leaving it accessed!! AAAAH!

They got me out of there and parked in the hall for a while. They wanted to check my blood sugar which was good since I hadn't eaten all morning. It was in the low 80s so I asked for some juice to hold me over until I got up stairs. They got me up to the out patient infusion clinic around 1:00 pm. They wanted me to hang out up there for 3 hours to make sure all was good. I ordered up some food and a ginger ale. I got a little sea sick when I stood up to go pee so I wanted the ginger ale to settle my stomach.

After I ate I fell asleep for a couple hours, then the new nurse came in to take my vitals. My friend's who were giving me a ride home got off work around 5:00 so I hung out a little longer than the 3 hours. Then I headed down stairs to wait for them. I wasn't getting good cell reception up on the floor. When my friends got there we headed home. We stopped at the store so one of the guys could get a perscription and I picked up a few groceries and something from the deli for dinner.

I didn't get much sleep because my apartment was too hot (87 degrees on the first day of fall??) and I couldn't get confortable. I like to sleep on my sides and I couldn't do that with the fresh port incisions. And that's incisionS...plural. I have a small one at the base of my neck. I guess they thread the tube down through there or something. I was still rather out of it when they explained it to me.

Things I have learned with this whole deal: 1: Wearing a bra is best. Without it gravity takes over, pulls my boob down and pulls on the port site. 2: Ice packs = great! I think I may bruise a little and I know I'm swollen. I can't even see where the dang thing is. 3: Vicodin is my friend, but I already knew that.

A busy week behind me, another one ahead.

2009-09-20T17:57:00.000-07:00

So I picked up an extra shift last week, what can I say, I need the money. However, as tired as I am right now, I wonder how much longer I can keep this up. But I don't see being able to quit in the near future. I look at the pile of pills I have to take twice a day and wonder how on earth I will pay for them, not to mention the doctors that perscribe them, when I have to stop working. My insurance was billed somewhere in the neighborhood of $25,000 for my hospitalization last month. And that is sure to be the first of many. That doesn't even count the 2 weeks of IVs at home either. I don't want to work until I collapse, but I don't see how I can avoid it at this point. My one day off last week was spent at the hospital for two different appointments. I didn't have any time to rest, and rest is what I want more and more as time as goes on.

This week won't be any better. Tomorrow I have a dentist appointment. Then I have to do laundry before my port placement on Tuesday. I won't be able to haul the basket to the laundry room afterward, that's for sure. Hell, I can barely haul it there now! Then its back to work on Wednesday. At least I got 50 vicodin out of the CF doc. 25 now plus a refill, and I will be refilling it whether I need it or not. I'm not an addict but when you have chronic pain its nice to have some narcodics around when you need it.

Power port and more drugs!!

2009-09-15T18:01:00.000-07:00

Hello everyone out there in blogger land! Well, I had a productive day at UW. I saw a radiologist about getting a port. If you have been keeping up with my blog you know how much my veins suck and PICCs are becoming very difficult. A friend on CF2 told me about power ports. They are rated to take higher pressure so you can receive injections that need to go in fast, like CT contrast. As I seem to get CTs pretty regularly these days I was all for this idea!! The radiologist was ok with it as well. Hopefully I'll be getting this scheduled tomorrow and have the placement next week!

I also saw my rhuem doc. I bitched about my fibromyalgia not chilling out since going off the antibiotics last month. We upped my evening dose to 150 mg. I told him that I really don't think I'll ever be able to go off the meds. He kind of has a wait and see attitude, but I'm pretty firm in my belief that me and lyrica will be friends for a looooooooong time.

Looking forward to Tuesday.

2009-09-13T20:22:00.000-07:00

Can I just say: SON OF A BITCH I AM SICK OF FUCKING HURTING!!!!!!!!!! Ok......I think its sorta out of my system. Antibiotics always set off my fibromyalgia but usually once they're out of my system I bounce back with a week. Well I haven't this time. And its very frustrating, I have no energy, I have to take half a percocet to get through work. So its just not good. But I have an appointment with the rhuem doc on Tuesday. I will beg for a higher dose of lyrica if I have to. Yes, me, will beg, for more drugs.

The doc wanted me to get to feeling good enough to get some excersise and then get off the lyrica. Which is great in theory. In real life, I have CF. Have CF, will get sick. Which means any benefit I may have gotten from excersise will go straight down the crapper! Not to mention the above named antibiotics that always make me hurt. So great theory doc, in practice not so much. I would love to get massage therapy again but with my random work schedule its hard to get into the chick that I like. So here we are.

Also on Tuesday is my consultation for my port placement. I was told to ask about a power port. These can handle a quick infusion such as CT contrast. That way I wouldn't have to get an IV for something like that. WOOHOO, NO MORE PICCS!!!

I growed these!

2009-09-12T10:59:00.001-07:00

Check out my tomaters!! This year I decided to grow tomatos in a pot on the deck. Not sure why, I just wanted to.

Long week!

2009-09-07T11:14:00.001-07:00

Uhg, I just got finished working 6 days in a row. How tiring. Anyone want to give me about $5000 or so that I can live on while applying for disability? Maybe I should go knock on Bill Gate's door.

Anyway, I had another chest xray and they seem to think that my lung may not be all the way up yet. So I go in tomorrow for another CT so they can get a better look. If they want me back on IVs I'm going to make them put a rush on my port placement and while I'm under they can just damn well do a bronch and wash the crap out of there!

In other news a good friend of mine just got listed for transplant! So your good vibes headed toward Texas would be much appreciated. You go C!!!

What's on my mind?

2009-08-26T21:21:00.000-07:00

I really don't know why I feel the itch to blog tonight. I guess I am restless. And lonely. I got an email from D that says he has about 70 days left. That's just a wee bit more than 2 months!!! I can't believe its been 4 months since he left (almost). The one good thing about this deployment versus the last one is that I was more prepared. I knew what to expect, how hard it was going to be, how much I would miss him. And that knowledge made it easier to go about my life. Its not that I miss him any less. If anything I miss him more. Before the last deployment we only had about 2 months together. This time we had 8. We got a lot closer, went through some seriously bad shit together, and I love him all the more for it. So no, I don't miss him less. Its just that I know I can do it. I did it once before, and I can damn well do it again! I'm not going to let a little thing like a war get between me and my man!!!

I've gotten into making jam. I did blackberry the other day. There is a huge patch of blackberry vines behind my apartment. I picked a big bowl full, washed them, smashed the crap out of them, cooked them with pectin, lemon juice, and sugar, and put it in jars. MMMMM! I made apricot today. MMMMM! I think everyone is getting jam for Christmas. Its fairly cheap to do this and its fun. Plus who wouldn't want home made jam!? Only some crazy fucker that I wouldn't want to know anyway! HA!

I got some statements from the hospital about how much they were billing my insurance for my admission. *Falls over from the shock* Ok, I knew that its expensive to be in the hospital. Just to have a damn bed in the place was almost $1500 a day! Then you throw in meds, tests, docs, labs, etc and so on. And what do you get for a 4 day stay in the hospital? $25,000!!!!!!! Holy shit! Are you serious!? If this isn't an agument in favor of health care reform I don't what is! Thank the higher power of your choice that I have AMAZING medical coverage. But at this rate I'm going to burn through my 2 million dollar cap in no time. And the average Joe is just supposed to bend over and pull THOUSANDS of dollars out of his ass? I don't fucking think so! No wonder our life expectancy sucks in this country. No one can afford to go to a doctor for preventive care let alone some sort of emergency like they have a damn heart attack because they can't afford to go to the doctor and get cholesterol and blood pressure meds!!!!!!! Slap your elected officials around and tell them we need to change this shit REAL fucking quick. EVERYONE should be able to go to the doctor!! That should be a basic human right along with food and white cotton underwear!

The nice lady at the farmers market.

2009-08-16T21:46:00.000-07:00

I went to the farmers market with some friends today. It was warm and sunny and the market is on the water so it was a perfect day to go! I had fun looking at all the crafts. There were some stands with some really pretty jewelry and art.

I had started my afternoon infusion right before my friends picked me up so I was hooked up for about half of the time we were there. When it was done I stopped to unhook it and when I was putting the mesh cover back over it a lady came up to me and said "Oh you have a PICC line!" Then she told me that she had had several PICCs while on chemo for lukemia. Then she said she had a kidney transplant. Well of course transplant is one of my soap boxes. So I told her congrats on that.

Then she asked me why I had one. I explained that I have CF and that I was getting over pneumonia. She said "Oh then you would definately need on going antibiotic therapy!" She also told me that I look great and that she was glad I am not dragging around oxygen with me.

This was one of those breif meetings in life that really kind of touched me. Had that woman never had lukemia she probably wouldn't have had any clue what a PICC was and would have walked on by. Isn't it funny when life works that way? This nice woman had to go through something aweful so that she could share the certain little something that anyone who has chronic health problems has. In that breif conversation we shared how hard life is when you're sick. The fears, the frustrations, the deep appreciation for life and loved ones. Its something that a well person can never understand, no matter how close to you or how much they love you.

Pic of my bleeding PICC

2009-08-13T15:41:00.000-07:00

There it is! A nurse came and changed my dressing. I think this happened during the night, but I don't know exactly what I did to cause it.

The PICC from hell!!

2009-08-13T14:49:00.000-07:00

I think this PICC knows its going to be my last and is taking its anger out on me! I've had it for 8 days and I've already had phlebitis, had it TPA'd, and now I bled during the night and have to have another dressing change. It doesn't help that the damn thing is practically in my arm pit! Its just giving me MORE reasons to be happy about getting a port!!

Clinic visit.

2009-08-10T18:25:00.000-07:00

So I had a visit with the CF clinic today. They took a new chest x-ray and it looks better than the one from the ER last week. I asked to see my CT out of curiousity. I saw my chest CT in May at Denver so I even had something recent to compare it to. On this one there was a HUGE blob of gray covering about 1/3 of my lung. That would of course be the infection/collapse. I was kind of shocked by it, even though all the docs had been telling me how bad it was.

Last night I had some trouble flushing my PICC. One lumen wouldn't flush at all, the other one was sluggish. So I called the on call nurse with my infusion company. He said to flush the one that was slow several times, and do it hard. That got it going again but the other one was still slow. So today I saw the PICC nurse at clinic. She wasn't able to get any blood return from it so she put TPA in it. TPA is an enzyme that dissolves blood clots. It had to sit in there for a while so mom and I went and got lunch while I marinated. We got back to clinic and we were able to get blood out of it!!! YAY!! So she told me to flush it hard with 2 or 3 flushes after every infusion. I'll also be using hepperan (sp??) twice a week to keep it clear.

I'm going to go in for follow up PFTs when I'm done with my antibiotics. And the big news from clinic is that I am getting a port!!!!! YAY!!!! I had planned on asking for one at this visit anyway and having this PICC gave me more amo to throw at the doc. My veins are very small which makes it hard to insert the PICC and once I've had a PICC in a vein that vein can never be used again. Plus they've never been able to get one in my right arm except for the first time. So the doc agreed with me that a port is a good idea. I'm going to get it sometime after I am done with this round of IVs. They want me feeling good before putting my body through anything else, which I agree with.

HOME!!!

2009-08-06T21:36:00.000-07:00

I'm home!!! I got discharged yesterday afternoon. My first stop was the chiropractor!! Those hospital beds are evil torture devices. Then mom and I went to the pharmacy to drop off some scrips because the doctor "forgot" to send them down to the hospital's pharmacy. Thanks a lot doc!

We picked up a few groceries too and headed home. It was so nice to know I would be sleeping in my own bed. And my kitty was SO happy to see me. She has been very protective, not wanting to leave my side.

Today has been rough on me though. I woke up with pain again, which first I thought was another collapse but now I think I popped out a rib coughing. The pain is different, it hurts when I push on it, and that wasn't the case before. So I had mom bring me a pain pill and got up in a little while. I ate breakfast, watched TV, nothing too special. When I started my afternoon infusion I was feeling sleepy so I decided to go lay down for a nap while it ran. When I got up I was feeling dizzy and nauseous, and pretty soon I threw up. When I tried to make it to the couch I almost passed out. So I laid there for a minute and then thought to check my blood sugar. It was kind of low so I think that between all the meds I'm on and the low sugar my system just went all haywire. Mom got me some juice and I laid there and drank it. In a little while mom said that my color was coming back. I still felt dizzy for a little while but that eventually went away too.

Hotel Hospital

2009-08-04T10:09:00.000-07:00

OK! Let me just fill you all in. On Friday I felt kind of crappy. Coughing more, the stuff I coughed up was thick and sludgey. So I called the CF clinic and they called in oral antibiotics (abx) for me. Unfortunately I didn't have time to go get them that day. I had an appointment in the morning and then worked late, so the pharmacy was closed when I got off work. The plan was to pick them when I got off work on Saturday.

About an hour before my shift was over I started having some pretty bad pain in my left lung. It got worse and worse so I called the on call pulmonary doc. He said to come to the ER so they could make sure that I didn't have a blood clot or a collapse. So I came in, got some pain meds, a chest xray, and a CT. The imaging showed a big blob of infection in my lung that they said was plugging up my airways. Pneumonia in a nut shell. So they gave me a dose of the abx I had been perscribed, and strict orders to go pic up my scrips the next day. I also got some percocet to take home.

On Sunday morning I woke up early still in pain. So I got up, took half a percocet to start with, updated everyone on the CF forums on what happened, and when the perc kicked in I went back to bed. I slept for a few more hours and when I woke up I was in more pain than ever. I seriously considered calling 911 it hurt so bad. But they would have taken me to Providence hospital and then I would have had to fight with them to get transfered to the UW. So I called the on call doc again who said he was going to look at my CT and call me back. In the mean time I started calling around to find someone to take me in. I wanted to be admitted since they could keep my pain under control and get me my meds. I knew there was no way I could deal with it at home. The doc called me back and said that I could be admitted.

So I got some stuff packed and came back to the ER. I was dehydrated because I really didn't drink anything all morning because I felt so bad. So they had a hard time getting an IV going, but finally got one on the 4th try. It was in a weird spot though and was hurting me so I asked for them to start a new one once I got some fluid into me. They gave me some meds and got the fluids running as fast as they could to get me hydrated. I hung out for a while and then some students from the medical team came to start the admission process. Which mostly consisted of a bunch of questions.

After a couple hours they had a bed ready for me and moved me up stairs. I was feeling pretty crappy by this time and asked for more pain meds and something for nausea. I eventually got both and started to feel better. I ordered some fruit and it tasted really good. I always want cold and wet stuff when I'm not feeling well, and the fruit hit the spot. Nothing eventful happened for the rest of the night.

Yesterday I still felt pretty bad. The docs came in to check me over, I had CPT, and walked around as much as I felt like. They pumped me full of every antibiotic known to man it seems like. I'm on IV vanco, cipro, and ceftaz. I'm taking oral zithro, and inhaling tobi. So that is 5 antibiotics in all. They really wanted to cover everything I guess. Last night after my CPT session I started coughing and I spit up a huge glob of crap. They wanted a sputum sample so I gave them a mother of one.

Today I fell quite a bit better, and I think a lot of is from coughing up that glob last night. I think it was part of the plugging. My pain is over a much smaller area, not the whole lobe. They talked about sending me home today but I said I think another day. I don't want to push my luck. I would hate to end up back here. Here I can rest and let someone else deal with my meds and bring me my food. I don't have to cook, I can fall asleep whenever I want without having to worry about starting an IV on time. So I think I should go home tomorrow. YAY!!! My kitty misses me and I miss her.

Melting, and diabetes clinic

2009-07-29T17:19:00.000-07:00

Its horribley hot. I'm melting. Today is supposed to be the hottest day on record for the Seattle area. In over 100 years of records this is the hottest day. You cannot find a fan or air conditioner anywhere in this half of the state. Eastern Washington is usually hotter than we are, but right now its cooler over there. I called my mom and asked her to buy me a fan and ship it to me. Express. Thank Bob for moms. I felt so sorry for my cat that I grabbed her and hopped into a cool shower with her. She was pretty pissed about that. I won't get away with it twice that's for sure. Its a good thing she's declawed in the front or I would have a shredded face. But I bet she feels better.

I had an appointment at the diabetes clinic today. My nurse practitioner said that all my blood sugar readings look good and my last A1C was great so keep doing what I'm doing. It was actually rather uneventful. Then I met a friend from the CF forum for coffee. We've been talking about meeting for over a year. She was nice enough to give me a ride home so that I wouldn't have to take the bus.

Then this afternoon I had my denture adjusted again. I shrank quite a bit according to the denturist, but some people shrink really fast and some really slow. Hopefully it will slow down in the next couple of weeks. Its hard to eat when my denture is loose unless I use a ton of adhesive on it. But adhesive feels like snot in your mouth when you take the denture out. So when I have to use a lot its pretty gross. But you do what you have to.

Healing up.

2009-07-25T17:58:00.000-07:00

So I'm healing up well from my 11 tooth extraction surgery. I've had a couple of adjustments to my denture already. I'm really happy with my denturist. He does unlimited adjustments for 3 months which is awesome! As I heal my gumline is going to be constantly changing for a while. And its important to have a good fit so that I'm able to eat normally and to avoid denture sores. Those happen when the denture rubs your gums. Not good. That opens the door to infection.

I slapped some powdered adhesive in there today to try it out. I think all my blood clots are gone and now the holes just have to close up. Plus I am sick of the soft food diet. I want some CHICKEN. And I've been craving fruit and bananas just aren't getting it any more. I bought some cherries and peaches. MMMMMMM!

Before and After

2009-07-17T20:25:00.001-07:00

Obviously this is the before pic.

Me, swollen and miserable on day 3.

A close up of my new teef!!!!

Me, happy with my new smile!

Chipmunk cheeks

2009-07-15T11:27:00.000-07:00

I'm really swollen today! My cheeks are all puffed out. The pain isn't too bad though. More of a dull achey feeling.

I went to the dentist yesterday so he could have a look. He said everything looks fine. Then I went to the denturist so he could see how the denture was fitting. There was one spot that had rubbed against my gum and caused a denture sore. So he filed that down and it felt a lot better. For the rest of it it was on the loose side which is good because it gave me room to swell (which I sure did!) and didn't squeeze me. I put the denture in to eat breakfast this morning but then took it back out because with all this swelling it was kind of uncomfortable.

Teef!

2009-07-13T11:20:00.000-07:00

Well I did it! I have all my upper teeth removed today. And I have no regrets so far even though I'm pretty hurty.

Mom and I got to the dentist's office a little before 7 this morning. No one was there yet so we waited and pretty soon I saw one of the assistants pull up. He saw me and waved for me to follow him. We went in and I sat down. The assistant said the doc would be a bit late because of traffic. So he started to get things set up while we waited.

The doc got there and got started on numbing me up. Yes, I was awake for this. I just concentrated on the radio. They finished setting up while I got numb. And then away we went. The doc had a little difficulty with the back teeth but for the most part I think they just popped right out. I didn't even notice when he got to the front ones. He started doing the procedure to even out the bone in my jaw (or else my gum line would be wavy) and I was thinking "He can't be done yet!" Then he stitched me up. It was a little less than half an hour from the time they got started until they were done! I was floored, but thrilled too since it was over so fast with so little trouble.

So I'm home now with a mouth full of stitches. I'm pretty sore but not horribly so, and I think its the places where the stitches got put in that are bothering me more than anything. I have lots of soft food to eat. In fact I am fantasizing about some yogurt right now. I also have lots of ice packs! I hope I don't have too much swelling. But if I do my cover story is that my pimp beat me. I think that is shocking enough to shut most people up.

Just stuff.

2009-07-08T21:19:00.000-07:00

Hello out there in blogger land! I hope I find everyone happy and healthy today!

So today I called UW and made a CF clinic appointment. Not that I am particularly eager to go back there after all the crap they put me through, but the fact is that I need them. If I get sick or bob forbid I have an emergency where the hell else would I go!? So they need to be up to date on what's up with me. But the good news is that I don't have to see that insufferable bitch EVER AGAIN!!! I made it very clear that the Wicked Witch of Scottland isn't to come anywhere near me. I told the nurse cooridinator that if she even comes in the room I'll get up and leave. I don't care.

The day of the great tooth removal is fast approaching! Monday is it! And yes, I am looking forward to having all my top teeth (what's left of them) removed. I am totally sick of the jack-o-lantern smile, the pain, the breaking on stupid shit like FROSTED FLAKES!!!! *deep breath* I'm better now. Well, I will be once this is over with.

I'm looking forward to having my mom here too! Since my parents moved 4 hours away I don't get to see enough of them. We get along great. We're going to try and go to the zoo if I am feeling up to it. We love the zoo.

Cardiology

2009-06-29T20:14:00.000-07:00

So I went to a cardiologist today about my fast heart rate (tachycardia in doctorese). He said that nothing in my medical history can explain it. I don't use a lot stimulants (even caffeine), my thyroid function is fine, and my blood counts are fine. So at the end of July I have an appointment for and echocardiogram (an ultrasound of my heart) to see if they can find anything structurally wrong with it. But the doc doesn't think they will. So we'll see what happens. But he doesn't seem to be worried about it.

CF means....

2009-06-20T21:47:00.000-07:00

Lately I've been thinking a lot about what CF (and fibromyalgia) means to me. So here it is.

CF means having to think about everything that goes in my mouth. How much insulin will that drink require? How many enzymes do I take for this burger? Sometimes its too much work and I'd just rather not eat or drink.

It means planning my day according to how much energy I have. One day I will come home from work and clean my kitchen from top to bottom. Other days even taking a shower is just too much work.

It means unconciously slowing down when I'm walking up hill.

It means hours of nebulizer treatments, vest, percussor, and cleaning equipment every day.

It means doctor's appointment after doctor's appointment. I don't remember the last weekday I had off that I didn't have an appointment. I have my pulmonologist, rhuematologist, nurse practioner at the diabetes center, my general practiotioner, and soon a cardiologist.

It means holding my breath every time I walk by someone who is coughing.

It means having one of those little Purell bottles on my purse, and refilling it often.

It means actually having a good reason to worry about catching the swine flu.

It means always coughing like someone with a 2 pack a day habbit. And constantly having strangers ask if I'm sick.

It means being able to speak the same language as a doctor or pharmacist, and being able to read there handwriting.

It means impressing new doctors with the ability to speak their language.

It means my teeth crumbling in my mouth.

It means knowing what infected mucus looks, and tastes, like.

And that's all I can think of for now.

I know I'm a bad blogger!

2009-06-18T21:44:00.000-07:00

Ok, I know I haven't blogged in a while! So here is the latest news.

I am having all my top teeth removed on July 13th. And I am very happy about this. They have been in horrid condition for years and when I lost a front one I decided I was done. I am getting an imediate denture, which means that the doc will pop it in right away. It will act as a band aid while I heal up and the denturist will give me unlimited adjustments for 3 months. Plus, my mommy is coming to take care of me! I have always gotten along great with my mom and I am looking forward to spending some real time with her. I haven't seen much of my parents since they moved 4 hours away a couple years ago.

I am seeing a cardiologist on the 29th for my tachycardia (high heart rate). I am also going to ask them about my lips and nail beds turning purple at random times. I am not happy about that since my PFTs are in the mid 50s and I have very little lung damage according to my last chest CT.