Post sinus surgery.

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.

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.

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.

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.....

....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

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

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!

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.

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.

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!!!!

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.

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.

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!!

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.

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

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

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

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!!

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!

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.

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.

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!!

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.

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!

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!

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?

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.

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

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!!

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.

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!!!

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

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

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.

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

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

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!

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.

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

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....

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!

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.

Handbook for anyone who shops or banks.

So I had this up on a myspace blog that I later had to delete and didn't think to save it. Basically its a guide for anyone who uses any sort of service. Mainly, if you are ever a customer, read this. Some of these are things that friends added. I will try to remember as many as I can.

*I do not remember you. I help 100 people a day, and I'm supposed to remember you after one visit? I don't think so.

*If I do remember you its probably because you were an asshole.

*Swearing at me will probably get you the exact opposite of whatever it is you want.

*I don't get paid enough to deal with your shit, don't treat me like crap.

*I don't need your life story, and to be perfectly honest, I don't care.

*You saying "I'll never shop here again!" is never going to break my heart.

*When at the produce section of the grocery store and the clerk cuts something for you to sample, don't leave the pit or skin on someone eles' future tomatoes. No one wants your spit up crap on their food.

*TAKE A FUCKING SHOWER YOU SMELLING BASTARD!

*Fully exhale your cloud of toxic smoke before entering my establishment. In fact, in some states you shouldn't be smoking within 25 of the door anyway. Keep that smelling shit that makes me cough outside.

*Don't ask me out......ever.

*Don't undress me with your eyes......ever.

*I'm not afraid to call the cops on you.

*When we say "This is a one time thing." We mean it. You don't get to do it next time.

*There is a trash can for a reason. I'm not your maid, your wife, or your mother.

*Keep your brat of your kid under control. I'm not your babysitter.

*If your little hell spawn hurts himself while doing something he shouldn't be, I will have to try very hard to contain my laughter.

*Don't leave comment cards with comments about my anatomy.

*No one works in customer service because they enjoy it. Have you ever thought that maybe my company just has really good benefits that keep there? I am not happy to see you, but I'll try to pretend.

The latest.

This week I saw the dentist (uhg, horrid people all of them!) for a tooth that was hurting. He couldn't find anything wrong with it but gave me antibiotics anyway just in case there is an infection in there. I'm debating about taking it because it hasn't hurt since then. It probably got freaked out. Tooth's internal monologue: "Oh crap! I've seen what happens when one of us bothers her, they get yanked out!"

Anyway, the oral surgeon I saw about yanking all my top teeth had written the dentist a letter that boiled down to: She doesn't need this, just fix the cavities. Asshole. After he told me he agreed with me. So my dentist ran the numbers and said that he would pull them and it will cost me $800. I will be maxing out my insurance and beyond. But who cares!!! No more teeth issues, at least on top. I will also have to come up with $675 for the denture then another $675 when all the adjustments are made. That is unless I can qualify for this line of credit deal they have. My mom said she would cosign it so we'll see. Yay for moms.

I also went to my GP about my migraines. I've had three or four a year for a long time but lately its been more like three or four a month. Very obnoxious. So I got some Imitrex for that. I haven't had to take it yet so time will tell how it does.

I also brought up the issue of my high heart rate and the Denver doc's concern over it. So we ran an EKG right there. My rhythm was normal, but fast of course. Then she wanted to check my thyroid because that can have an effect. That blood work was normal so she put in a referal to cardiology for me. So I am waiting on a call from them. If I don't hear from them by Wednesday I will call them (that will be a week).

So that's what's up in my world. I hope everyone out there is healthy and ready to enjoy their summer!

Hurting today.

This should teach me to drink enough water. I think I got dehydrated today and I am in PAIN, with a capital THIS FUCKING HURTS!!!!!!!!!!!!!!!!!!

Uhg. I just don't even know how to describe this to someone with out fibromyalgia. If you've ever had the flu, and you get those aches from hell that's getting there. Except those aches usually get better with some tylenol or advil. This pain doesn't. And it takes so much out of you. It took all I had in me to go to the grocery store. And I had to go today. My friends were taking me (I don't drive). I almost cried when they didn't have any of those little scooter carts. I actually hopped up on the cart and road it while my friend pushed just so I didn't have to walk the entire time.

I am supposed to work tomorrow and I just hope that a double dose of lyrica will kill this. I am so tired that a shower is totally out of the question. I have no energy left......so what am I doing here! Screw this! I'm going to bed with my kitty!

Hohum.

I've just kind of been "off" since Dan left. Ok lets be honest, depressed. Not that I think anyone wouldn't understand. But I need to deal with this in my own way. Right now its hard for me to hear about how happy other people are with their significant other. So this is really nothing more than an explanation for why I have been silent lately. I'll get back to something like myself sooner or later.

Rhuematologist visit

So I saw the rhuem yesterday. They managed to squeeze me in since I was feeling like crap. My hips were really hurting so he got to see me hobble around. This is probably a good thing because he was able to see how much I was hurting and how it was interfering with my life. He gave me another scrip for lyrica since it worked so amazingly well for me. I have 3 months of refills on it. He wants to see me again in about six months. The goal here is to get me feeling good enough with the meds that I can start doing some real excersise (more than just walking and yoga). I would really like to get my butt on my bike and the elipticle machine in the work out center at my apartment complex. Excersise is great for fibromyalgia and CF so we would be killing 2 birds with one stone. And then at that point I may be able to cut back on the lyrica or stop it all together. This is a wonder drug though (at least for me) and I would encourage anyone with chronic pain to give it a try. It makes me a little woozy for the first week but then it goes away and I feel amazing. I can function so much better. My work performance improves and my apartment is cleaner!

After the appointment!

After I left my appointment (feeling much better about my health and the potential for it to get better than I have in years!) Patty drove me around Denver a bit. We went by the Denver Mint where they make money! That was kind of cool to me since I work with money and have somewhat gotten into coin collecting. We went through the downtown area a bit and by the stadiums.

Then we headed out of town to go to Black Hawk. Its a little town up in the mountains that seems to be nothing but casinos. We had to take a slight detour through Golden as there was some road construction happening. But that took us by the Coors brewery (I don't particularly care for Coors but still cool to say I saw it). Golden is a cute little town, has a very old feel to it.

I picked the Golden Mardi Gras Casino to try our luck at. We both decided to just play $20 because we're both too chicken to lose more than that. We fiddled around for a while not really getting anywhere on the machines. I won I think $8 on one. Then on a different machine on a whim I decided to go for the maximum bet. I won about $50 and ripped my ticket out of that machine so fast! Over all I came out $40 up so I left Denver with more money than I arrived with.

We had just enough time to go get dinner before I needed to head back to the air port. So Patty took me to the Trail Dust, a rib and steak place that her family likes. You can't go to Denver and not have ribs or steak!! I had a half rack of ribs that was yummy, they just fell right off the bone. I did however decline to try Rockie Mountain oysters. No thanks!

We kind of had to rush to get me to the airport. And my gate number wasn't on my boarding pass (I was able to print that in Seattle when I flew out that morning), but luckily the airport was very empty so I got through security without any hassles and was able to find my gate on the reader board. I even had time to stop and pick up some souveniers for friends. I got a very cute shot glass with a little moose inside who's fishing.

All in all I wish that I had more time to check out the town, so my next trip will be for a weekend I think. Denver seems like a cool town and the people were very nice. I look forward to my next visit!

My trip to Denver.

YAY DENVER!!! I am NEVER doing that in one day again though. I can't sleep on planes and I was SO tired. Oh well, live and learn.

So Patty was nice enough to drive me all around yesterday, thank you SO much! She picked me up from the airport, we drove through Wendy's so I could have some lunch and then I went to my appointment. National Jewish is a really nice facility. Its not a hospital, they do their admits through the university, so while it does have a medical office feel, it doesn't feel like a hospital. No one is walking around hooked up to IVs and junk. No patients are being wheeled around on gurneys.

I got checked in, then they called me back and took my vitals. The altitude didn't seem to effect me at all. My O2 sats were 98% and my FEV1 was 54% which is normal for me. My heart rate was 116 though, more on that later. The RT came in and did my PFTs and asked if I needed any supplies (nebs and stuff) and I said that I did so she hooked me up with some new Peris. Then the nurse came in and asked me more about my medical history and current meds. They had my records from the last year from UW but they wanted it from my own mouth which I liked since UW can never seem to update my med list. I also made sure to tell her that I had done IVs last month and that I was on prednisone right now for some inflamation.

Then Dr. Nick came in to talk with me. I really liked him! He's the head honcho there. He's very soft spoken, and his hair was kind of scruffy, but he seems like a very compitent and caring CF doctor. He listened to my questions and concerns. I almost fell off my chair when he said that he would have expected someone with my lung funtion to have had between 20 and 30 rounds of IVs in their life time. I've had 3. He wanted to get a chest CT (UW only did one once when I was having severe chest pain and they thought I threw a clot) to see what damage I have. He is also concerened that my heart rate is always so high (UW isn't). He said that he would expect to see a resting heart rate of 110 bpm in a patient who was nearing transplant. He wants to get to the bottom of that.

So I went up for my CT and met with the dietician and social worker when I came back. The dietician said that she is happy with my weight (121 pounds), I take my enzymes, rarely get constipated, and my last vitamin levels were fine. She said that she is pretty hands off unless I need something from her. She said that no matter how much she reads or works with CF patients she will never know as much about it as me!!! THANK YOU! So she didn't have anything for me and I didn't have anything for her. It was pretty much the same for the social worker. She asked about my lifestyle (live alone, have a boyfriend and a cat, when I was dx). She said that when I get ready to relocate they can help me with finding a place to live and anything else I might need.

The RT came back in to see if I had spit out a glob of goo for her and I hadn't. So she did something that UW has never done if I wasn't able to get something up....sputum induction. That's right, UW has NEVER done sputum induction on me. Nat. Jewish was not letting me leave without a sample. Thank you.

Dr. Nick came back in to check out my CT with me. He went through the whole thing with me explaining what we were seeing. I have never seen one of my chest xrays let alone my CTs. He said that the only trouble spots I have are behind my breasts which they see in CF women all the time. The vest just doesn't get that spot very well through the breast tissue. So he wants me to use my percussor in certain spots around my breasts while I lay on my back to help unplug those spots and drain the goop out. He said that I don't have a ton of damage and wasn't concerned about it alone. He did say that based on the damage he would expect that my PFTs would be higher. So he feels that I have more of an asthma component than I have been lead to believe. He wants to switch me to a different bronchodialator and see what that does. He also said that it may help my heart rate to go down as well.

If the change doesn't help my heart rate he wants to get an echo-cardiogram and have me wear a heart monitor for 24 hours to figure out what's going on there. Over all Dr. Nick spent a good hour and a half or more with me. I can't tell you what a huge relief it was to be listened to and have my concerns validated. He asked if he could send a letter to UW about what he wants to try. I told him that they know I am not happy and that I was coming for the second opinion, and to PLEASE write a letter.

I was very happy with my visit and looking forward to seeing how the new med works. I have an appointment for a study visit in about a month so I will see if my PFTs change at that time.

For these next six months....

For these next six months, while you're so far away, I'll think about you every moment. I'll go to bed alone, and sometimes I'll cry myself to sleep. I'll worry. The smallest things will remind me of you. I'll look at your pictures every day. I'll go to work and pretend that I'm ok. People will ask me to thank you for your service. I'll wait impatiently for the days when we get to talk. I'll walk on air after we do. Most days will feel empty.

Most of all for these next six months I'll love you so much it hurts, but I won't be whole until you come home.

Don't go D!!

I don't want you to go babe!! I'm going to miss you so much! But I'll be here when you get home. *cries*

Getting helthier!?

Really? Could I be getting healthier?? In about 7 months my PFTs have gone from a baseling of 47% to 57%. 10 whole points! 60% is within reach here people! I gotta start riding my bike to work! I bet that would kick it into gear even more. I could probably lose a couple of pounds too.

In 2 months I've gained 6 pounds! I mean I know insulin helps you keep your weight but this is nuts! My clothes don't fit and I cannot afford to replace my wardrobe! Plus I am getting cottage cheese thighs! I never thought I would have to worry about cellulite, that's for other people.

Going on lyrica has helped my pain immensely! I have been in pain on some level, every day for 10 years! And now its rare that I even need to take Tylenol. The massages were great but they were not this good, and no match for the aches that antibiotics gave me! I see the rhuematologist at the beginning of June and if he doesn't hook me up with a longer perscription he better watch out!

My address

What is the problem with people getting my address correct? I have had numerous things that get returned to the sender because they have my address wrong! Usually its my apartment number, although I am very careful to say its "N as in Nancy, 206." But today I got something, and it will forever be a mystery as to how I got it at all, that had my street as 8th, when its actually 85th. Seriously, I don't get it!

I have had more issues with mail since moving in here. Not just people getting my address wrong but also stuff just getting lost period, or coming postage due so then I have to go down to the post office to fetch it. I just don't understand!

Hmmmm

So I called my medical insurance and they told me to get letters of necessity to see about getting them to pay for my teeth. So I called the CF clinic and am waiting for a calle back to get them to write a letter telling them what has caused my teeth to be in the shape that they're in. Then I called the oral surgeon's office. And here is where I blew my top. The doctor and I had talked about taking all my teeth out starting with the top ones. He told me to get established with a denturist so that when the time comes I can get a partial denture. And that was all I was told, other than that they would help me however they could.

When I called today the woman I talked to said that there was nothing in my chart about which teeth need to be removed, what the game plan is.....nothing. I said that we had talked about all this and I didn't understand why there was nothing to this effect in my chart. She said that I need to see the denturist, he will say what teeth need to be removed, then I have to come back to the surgeons office for another appointment where they will follow what the denturist said. What the hell!? He's a god damn surgeon! As far as this stuff goes he's the top of the food chain as far as I'm concerned! Why does he need a fucking denturist to tell him what to do!? The denturist just plugs up the spaces left when the surgeon gets done!! AAAAAAAAAAAAAH!

Mah Teefs

I saw the oral surgeon today about my shitty teeth. He agreed to take them all out. He wants to do it in stages, which is fine since the idea of an all in one job skeeved me the hell out. I have to get a referal to a restorative dentist so that I have somewhere to go to get a partial after stage 1 is completed. He wants to do the uppers first because the bottom ones aren't as bad and I could be able to keep them for a few more years. Again, fine by me. The right side is already pretty much started (pfffffft) since I lost 2 on that side since December.

I didn't realize that you can lose up to 70% of your sense of taste without teeth! WTF do teeth have to do with taste!? He also said that my ability to chew would be significantly lowered but it can't be much worse than it is now, hell I can't eat Frosted Flakes without teeth falling out!

What is it so hard!?

I called the diabetes clinic to get a new meter. They were out of my model so they mailed me a coupon for a free one from the pharmacy. It says right on the fucking thing that a perscription is required for the pharmacy to honor it. Was there a scrip in the envelope? Of course not. So of course this was a Friday when I got the thing, after the clinic had closed. So I had to wait until today to call them. I called at 10:30 in the morning on my lunch break. I said that whoever mailed it should have known that it required a scrip and should have included it and I wanted it called or faxed in so I could pick it up after work.

I got off work at 2:00 and got to the pharmacy at about 2:30. They didn't have the scrip. I have NEVER had a doctor's office take 4 hours to call something in! I was pissed, so I called again. I appologized in advance to the receptionist because I was furious and I understood that it wasn't her fault. I asked her why they couldn't get someone to sign a paper and someone else to cram it in a fax maching in 4 HOURS! She said she would get it to the nurse practitioner I see as soon as she was done with her patient.

The medical assistant called me back when I was on my way home. I couldn't wait on them because I had to get home to infuse my ceftaz. She said she was calling it in right then. I told her that the staff there needs to be informed that if they are going to send people these coupons that they need to include a scrip. She asked me why I didn't just come to the office to get a meter. I said that I live 25 miles away, work during the hours they are open, don't drive, and to top it off they were OUT OF MY METERS WHEN I FUCKING CALLED THEM!!!!!! I told them that if the guy who sent it would have just read the damn thing that there wouldn't be a problem.

So I still don't have the fucking thing more than a week later! It's only $20 but why the hell should I pay $20 when I am supposed to be able to get it for free!? I don't have any extra money to go around so anytime I can save a few bucks is really helpful. Damn I am fucking pissed!

PICCed

So I got my PICC today. The nurse was able to get it on the first try thank gawd! Last time I was mangled. I think this will be my last PICC. My veins are SO small that they are never sure if they can get them in or not. Then once I've had a PICC on a vein it shrivels up and its useless afterward. So at my next clinic visit at UW we'll talk ports. Seems like it would be easier all around. That's all I have to report so far. Cross your fingers and toes and anything else that ceftaz doesn't make me hurt all over.

My latest dumb ass stunt.

So last night at my friends house I was checking my blood sugar (and I admitt to having had a couple of drinks) and I dropped my meter in the dog's water and killed it. It wouldn't even turn on. I got it out of the water and tore it apart pretty fast but not luck.

D was here this weekend. I love it when he's here. The only bad part was that we got to fooling around and I forgot to take my evening pills. Wow do I feel the missed dose of lyrica. That should teach me to take it religiously huh?

I had night sweats last night. At first I thought I just had the heat turned up too high so I turned it down, WAY down. But I woke up a few hours later drenched in sweat and the room was cold. So I believe I will be giving up and calling for IVs tomorrow. So much for trying to make it a year.

FUCK!

So, after finishing my 2 weeks of levaquin which was on the heels of cipro I feel like my face is ready to explode from the sinus pressure. I am also coughing more and my junk doesn't want to move. It also tastes like ass, you know that rotten taste it gets when you have something cooking in there? Son of a bitch! I just may end up with some fucking IVs!

Make it stop!!!

Why do I wait until I am about to go totally nuts to call for meds!? WHY DO I DO THIS TO MYSELF???

The levaquin is making me hurt all over!! And of course I wait until I'm almost done to call for lyrica. Well, turns out lyrica is a controlled substance which means I have to have the original scrip to take to the pharmacy. I didn't know that! So I am waiting for it to be mailed to me! Mailed??? AAAAAAAAH!

Look what I did!

I made my first sock! There were several techniques that I had never used before so I followed the pattern exactly without worrying about the gauge. So its a little on the small side but that's ok. I wasn't really planning on doing a pair this time since I figured I might have some mistakes, which I do! There are a couple holes where the stitches naturally want to be loose there. But that's ok, I learned where I need to really yank on it to get it tight enough.

I had a lot of fun learning this! I've been wanting to do socks for a while and I finally found instructions that a 3 year old could follow. I think I could do a pair in a week and a half or so. I like fast projects, I don't have time to get bored!

I caved.

I caved today. I called the doc and asked for some oral antibiotics. I have been feeling run down, short of breath, tired, coughing more, and stuffed up. I've also had a couple night sweats. So I got some levoquin for 14 days. Hopefully this will kill it before it really gets a good hold.

I also bought some miralax. Seems like I only go #2 every other day or so and with the amount of food I eat that's just not enough. So hopefully this will clean out the pipes, so to speak.

Still no sign of the big fat cat. I don't know what to think. I hope that he's ok and just hanging out with someone for now.

Blah

I just finished working 8 days in a row and I am DONE! I am SO tired, and the weather has been scitzo so I've been really achey, then my tummy decided it didn't like the chinese food from last night so I have (literally) rip roaring gas and bad stomach cramps. I forgot to put needles for my insulin in my "CFRD stuff" case so I barely ate anything all day to try to keep my sugar from spiking. Probably better for my stomach anyway.

D leaves for Afghanistan in 6 weeks or so. Uhg. I don't know if its better or worse this time, knowing what I will be going though. Knowing how painful this will be, how much I will miss him. He is going to move out of his house, put his stuff in storage, and stay with a friend until he leaves. The problem here is that this friend is someone he used to date. He said she has a lot of baggage and was really clingy. So on the one hand, my "gonna be the cool girlfriend" side says it will be fine. But my "always a bit paranoid about how much men think with their cock" side says that this is not a good situation. I have no rational reason NOT to trust him. I don't know. Part of me is still astonished that someone as great as him wants to be with me. Me and all my diseases, my decaying body. Could he really love me enough to watch me waist away, then possibly go through transplant, then eventually waist away again? I know people like that are out there, but have I really found one? Am I really that lucky?

Enough!

Seriously, I'm done! I have had enough of life. Its one thing after another for over a month now. I want some more GOOD news to blog about.

I let my cat out yesterday when I got home from work. Nothing weird there. He didn't come in by the time I was ready for bed, again not too weird. I went to bed knowing that if he cried at the door I would hear him. I don't sleep with my bedroom door closed and my front door is not far from my bedroom at all. I woke up at five in the morning and still no cat! I threw on my robe and slippers, grabbed the bag of kitty treats, and ran outside. I shook the bag and called him until I got too cold and had to go back inside.

I kept calling here and there while I got ready for work. And still no cat! While I walked to work through the apartment complex I called and called for him. There have been a few times that I have found him half way across the complex on my way to work. But not today.

I got so desperate I asked my ex to try when he got off work since he got off way before I did. He came and called for him for a while, and nothing. On my way home through the complex I looked and called. No cat. I had a deliquint rent notice on my door (that got resolved no problem, I paid my rent a week early!) and on the way to the office I called, then on the way back. NO CAT!

I printed some color fliers with a picture of my fatso and put them up all over the complex. I put them in all the laundry rooms, by the mailboxes, and the dumpsters. I figure everyone has to go to all of those places sooner or later. Tomorrow I am going to call some vet's offices to see if anyone brought him in. The ex is going to check the animal shelter for me since I won't be able to get there before they close.

He has disappeared before for a few days, once for a month, but never in the winter when its COLD and rainy. He had a color and tag but is really good at getting out of them. I always have a spare laying around, that's how often he loses them! He is a love and very friendly so I am hoping that he just conned someone into taking him in for a little while. Maybe with the fliers up someone will call me tomorrow and say they have my boy! I put my work and cell phone number on them so I am reachable 24/7. I put a little bowl of food out by the door just in case.

I want my buddy home! We always go to bed together, its not the same without him!