Trigger Point Injections.

In case you didn't know, CF is painful!  The pain can be from various things; arthritis, general inflammation, headaches from oxygen deprivation, and more.  If you know me or if you've been following my blog for a while you know about my crusade to get some relief from my chronic back pain.

Since I cough so much the muscles in my back are constantly being strained and pulled.  From my mid-back up I have many muscles that are constantly knotted up to the point that they pull my vertebrae out of alignment.  On a good day its just annoying.  On a terrible day its debilitating.  I've been to chiropractors, massage therapy, physical therapy, pain specialists, and acupuncture.  I've tried various medications that are usually prescribed for chronic pain.  Massage an acupuncture have been the most effective but they are expensive.  When I went on disability I couldn't afford them any more.

A few months ago my primary care doctor and I talked about trigger point injections.  I would have done it sooner but then I had two hospitalizations, did some house sitting, and moved.  Today I went to see her for my first trigger point injections.

TPJs are injections of either lidocaine and saline or lidocaine and steroids right into the knotted up muscles.  Then the fluid is massaged in to spread it out through the muscle.  I elected to have the lidocaine and steroids since my pain can be so severe and I'm not going to stop coughing any time soon.  Hopefully the steroids will reduce the inflammation in those muscles.

The injections themselves weren't bad at all.  I've had flu shots that hurt worse.  In a weird way it felt kind of good, that "hurts so good" feeling.  My doctor said that for some people there is little to no relief but that others will have spectacular results that last for months.  Right now the injection sites are sore from being jabbed with a needle (duh!), it feels like a bruise.  I'm hopeful that it will help though.  I've had some really good upper back and neck pops this afternoon and evening.  With any luck my spine is coming back into the correct alignment.

I'll keep you all posted on how this pans out.  I think it could be a wonderful solution to for people with chronic muscle pain, especially my cysters and fibros.  Its minimally invasive, not very painful, and the few potential side effects are minimal.

May is Cystic Fibrosis Awareness Month!

Happy spring everyone!  I don't know about you but I'm ready for it!

As you may have gathered from the title of this post, May is CF Awareness Month!  I thought I'd do a few posts about CF in general, how it effects me, and what I think of it all.  First, some facts about CF.

• Its the most common inherited disease, yet there are only about 60,000 people with it world wide.  Roughly 30,000 of those live in the United States.
• About 90% of people who are carriers for the gene have no known family history of CF.
• There are about 1800 genetic mutations known to cause CF and more are being found all the time.
• The CF gene was identified in 1989.
• When the Cystic Fibrosis Foundation (CFF www.cff.org) was founded most children with CF did not love long enough to start school.  
• The current life expectancy for CF patients in the United States is in the late 30s but there are many who are living well beyond that.
• In my lifetime the average age of CF patients has doubled.
• About 45% of CF patients in the US are over 18.
• More than 70% of patients are diagnosed by age 2 thanks in large part to newborn screening which is mandatory in all 50 states.

 

Happy spring!

How's it going out there in internet land?

I had a rough March but things are settled now, so update time!  At the beginning of March I caught a cold.  I felt pretty crappy for a few days but it wasn't too bad, I thought.  It seemed like I never quite recovered.  I was really tired all the time and my back hurt terribly.  To top it off I was getting ready to move at the end of the month.  Since I wasn't feeling well though I just couldn't get much done toward that.

Around the 20th of the month I started feeling even worse.  I was having night sweats so bad that I was dehydrated and dizzy.  My BF brought me some Power Aid to get my electolites balanced out and that helped a little.  A few days later though I woke up very early in the morning, took a sip of Power Aid and instantly knew I was going to throw up.  I managed to make it to the bathroom though.  I crawled back in bed with an ice pack on my back and managed a few more hours of sleep. 

When I woke up again I had a sore throat.  That combined with the aches, and fever made me think I might have the flu.  I put in a call to my CF clinic and waited to hear back from them.  It was only about 20 minutes later though that I decided I couldn't wait.  I got in touch with my good friend N who works near my (now former) apartment and he came and took me to the ER. 

Every one in the ER treated me under the assumption that I had the flu, my symptoms were classic.  I was given fluids, which I needed badly, and Tamiflu before heading off for a chest xray.  When the xray came back my CF doctor came in to tell  me that I had a pretty bad pneumonia in my left lung.  It was the same lobe that collapsed almost 4 years ago and has never been right since.  It turns out I was on the verge of it collapsing again.  I think the virus I had a couple of week prior got the pneumonia started which is why I never really recovered.  In the ER they took cultures to check for the flu and RSV.  I asked to be admitted because I was in no shape to take care of myself at home alone.  The doc agreed to that.

N was nice enough to go back to my apartment and pick up my cat Savage and take him back home with him.  I was moving in with N and my other friend B at the end of the month anyway so it was the perfect place for him to go and I wouldn't have to worry about him.

The cultures came back negative for flu and RSV so I just had a cold on top of the pneumonia.  The combination of the two made it look and feel like the flu though.  So that was good news.  Once I got started on IV antibiotics I started feeling better very quickly.  I stayed in the hospital for 5 days and went home on IVs. 

I went to CF clinic about two and a half weeks after my admission.  My chest xray looked WAY better.  I saw the before and after and it was amazing.  Even the doctor was shocked at how much better it looked in such a short time.  Usually a pneumonia that severe takes a long time to clear up.  Even the one that collapsed my long took about 2 months to resolve.  I decided to continue IVs for another week because I still wasn't feeling quite back to baseline.

Now I'm feeling pretty good.  I'm not so tired but I am still coughing up a lot of junk so I know the pneumonia is hanging on a little but breaking up nicely. 

A week after I was admitted for the pneumonia I managed to sprain my ankle.  Uhg.  Just like me!  Luckily my BF was there when it happened and was able to take me in to the ER again.  I didn't think it was broken but I had badly sprained that ankle before so I wanted to make sure.  It wasn't broken but I did spend several days in a boot, then moved on to an air cast.  Its feeling pretty good now but I need to start some excersises to strengthen it.

My move was kind of hectic since I hadn't been able to prep as much as I wanted.  Thanks to my awesome friends though it got done and I am mostly settled in to my new place.  Savage was stressed until I got here but he has calmed down now.  There is another cat here only a little older than him and they act like brothers.  They love to play tag and wrestle.  They both sleep with me at night.

So, over all things are going great right now!  I hope the same is true for you.

You know what's pathetic?

When I have to drop bombs like “attorney” into a conversation with staff at a doctor’s office just to get a refill authorized!

Here’s the letter of bitching…er, complaint I sent to the hospital. Names have been changed to protect the stupid.

I am a long standing patient at the UWMC at several different clinics and departments. Generally speaking I don’t have any issues getting my medications refilled except through the neurology clinic. There have been several occassions when the normal 24-48 hours has taken closer to 96 hours, but I have let it slide because I always give myself plenty of time so that I won’t run out of my medication. However; I have been trying to get a refill for two weeks now. The only thing that has saved me from running out thus far is that I was in patient at the hospital for two weeks in January. Since the hospital was supplying all of my meds I had two weeks worth of overlap.

As is typical, when it was time to refill my meds and I was out of authorized refills my pharmacy sent a fax to the neurology clinic. They did not get a reply back after a few days so they sent another, then another. I called the clinic and emphasized the fact that I was now running out of my medication and I did not have 24-48 hours to wait. The person at the call center said she would pass the message along and be sure to let them know that this needed to be a priority. Today I recieved a voice mail from someone in the clinic named T who said that there was a problem with the phone number I had left for my pharmacy. However, when I talked to T later she said that she had spoken to my pharmacy. She said in the message, once again, that it would take up to 48 hours to process this. Since in the past I have had to allow up to 96 hours processing time you might understand that I was not comfortable with this answer.

I was able to speak to T again, and I do admit that I lost my temper. However, I feel that under the circumstances I am justified in being quite upset. She kept trying to tell me that I should have called my pharmacy before I got so close to running out of meds but then refused to listen to me when I said that I had talked to them several times and that this was not the first issue I have had getting refills authorized from this clinic. Also, what good is going to do for me to speak to the pharmacy when they have been trying to do their job but getting no response? Her out and out refusal to listen is what caused me to become upset with her.

I go to the neurology clinic for treatment and monitoring of my epilepsy. As with any medication that effects the brain chemistry, going cold turkey on my meds would likely cause me to have seizures. If that were to happen because this office was taking an inordinately long time to process refill requests I would not hessitate to contact an attorney. Then I would immediately start looking for a new neurology clinic to tranfer my care to. At this point I might just transfer my care anyway because I have enough stress in my life without having to deal with this hassle every few months. I would prefer not to do that because my doctors are wonderful, but the fact is that I have to deal with the staff more than the doctors and it isn’t worth this.

I have never had so many issues getting my medications through other clinics at UWMC. There is some kind of failure happening at the neurology clinic that is causing refill authorizations to take twice as long (or more) as any other department. I could safely miss a dose or two of any of my other medications, but this one I cannot. A neurology clinic should understand the importance of this better than most.

I would also like to address the fact that most clinics are now using the call center. While I understand that this system is probably much more efficient for scheduling appoints and general questions, when it comes to something urgent it just makes things harder. It means that there is one more person in the chain that the patient is counting on to get the details correct and pass the information on. While they are generally very good at what they do, they are human just like everyone else and they do make mistakes. I strongly feel that for certain departments that deal with more serious medical concerns, there needs to be a way for the patients to contact the clinic directly.

Long over due updates!

I know, I know.....bad Tadpole!  Things have been crazy.

The holidays were nuts this year.  I rarely had a day off from doing something or another.  There were parties, birthdays, dinners, movies, dates, and doctor's appointments (when is there NOT doctor's appointments?).  In the last week of December I started to wonder if I was pushing my luck and over doing things.  By New Year's Eve I knew I was.  I was exhausted, had no appetite, was spiking fevers, and short of breath.  Pretty standard stuff for me when I need IVs. 

So on January 2nd I checked myself into the hospital.  Normally I do my IVs at home from start to finish but I had to go in this time for a couple of reasons.  One: I simply did NOT have the energy to take care of myself on my own this time.  Since I live alone this is an issue.  Second: Medicare doesn't cover home IV antibiotic therapy.  Figure that one out.  They'd rather pay $1500 a day for two weeks just for me to have a room in the hospital (not counting meds, nurses, docs, tests, and food) than pay $3000 for the full two week course at home.  Uh....wut!? 

My primary care doc is on the team that sees CFers when they're in patient at my hospital (awesome!) so she was MY doc most of the time I was there.  She tried everything she could think of to get me out of there but in the end everything fell through so I had to stay the whole two weeks.  After the first 5 days though I got a day pass so that I could leave in the middle of the day.  This allowed me to take care of some errands myself and most importantly, come home to see my kitty! 

I had so many friends come see me while I was in, it was fantastic!  There were only one or two days that I didn't have any visitors.  There were a couple of days when I had five or six, at the same time!  How sweet is that!?  People brought me goodies, and stuff to do.  I seriously have the most amazing friends.

The day after I got out of the hospital I went to my friends' house to house/pet sit while they went on vacation.  This had been planned for months, I'm just glad I got out in time to keep my promise!  So, even though I wasn't at home, I wasn't in the hospital and Savage got to come with me.  So that was fine by me!  I mostly rested up from two weeks of crappy hospital sleeping while I was there.

Now I'm feeling really well.  I had a period where I felt very asthmatic for a while, but the air quality got kind of poor and that always messes me up.  I'm going to the CF clinic on Monday, and I'm eagerly awaiting my PFTs.  Oh yeah, I need to make a list of scrips I need.  Ah, screw it, I think I need them all!

This is how it feels....

.....when you get rejected because of your disease.

Dear Dude,

I’m going to apologize in advance for some of things I’m going to say.  The thing is; I’ve never had the chance to tell someone exactly how I feel about being rejected because of my disease.  I’m taking it.  I need to.  I really hope this doesn’t destroy a chance at friendship for us.  As hurt as I am right now I don’t hate you and never will.  I wanted to write this instead of tell you in person because with something intense writing just works better for me.

Right now I have this huge desire to just rage at you for rejecting me because of my CF.  I want to scream at you about being a poor excuse for a man, weak, uncaring, unfair, judgementle, and selfish.  Yes, I’m going to die before you, but so what?  Anyone who cared enough about me would rather be with me for however long I’m here than not at all.  

I’m even questioning whether or not you are capable of being my friend.  I need my friends, I need them absolutely.  When my health declines I will need support, shoulders to cry on, cheerleaders, listeners, and help doing simple tasks.  Can I count on you to be a part of that team?  You already told me that my death will be one of the most difficult things you’ll have to deal with.  This doesn’t instill me with confidence.  At this point in time I’ve lost a lot of respect for you. 

You said you don’t deal with death well.  Guess what, no one does.  It isn’t supposed to be easy.   It’s supposed to hurt.  In my adult life I’ve had to deal with the deaths of more than twenty loved ones, but even if I were given the option to go back and not become their friend to save myself the pain of their death, I wouldn’t do it.  I’m better because of them.  I will never distance myself from any of my CF friends who are still living.  I need them and they need me.  I went into these friendships knowing what could happen.  I’ll see more of them die, in the same way that I’ll die!  It’s like having a sick crystal ball.  Some of them will see me die, yet they don’t reject me.  If I can make it through more than twenty monumental losses and be whole, then you can make it through the handful you’ll have to deal with in your life.  The first man I ever loved died.  It was the worst thing that’s ever happened to me, it took me years to get over it, but I did.  I still love him dearly, but he wouldn’t want me to mourn him forever.  He’d want me to find someone else to be happy with, which is why I haven’t given up.

  

I meant it when I said that I understand this.  You have a choice about whether or not to take this on and how much.  This isn’t the first time this has happened to me, it probably won’t be the last.  No one wants to see someone they love suffer and die.  The thing is; there are no guarantees that you won’t be put into that situation with someone else.  The only difference is that I’m more aware of my mortality than most people.  What if you’re with someone for years and years who was perfectly healthy and then they get cancer?  Would you break up with them then?  

I wish there was a way that I could make you feel how I feel about this.  You have no idea what it’s like to be terrified of falling for someone and them falling for you because if it happens they will watch you die!  I don’t want to be responsible for causing that kind of pain.  Sometimes I think it would be better if I’m single forever.  At the same time I’m still human and I want someone to love me.  I want someone to love back.  CF has taken so much from me; the only career I ever wanted, kids, friends, my independence.  Every time it makes someone I care about run from me I just want to crawl in a hole and never come out.  It just isn’t fair that it should take away the one thing that would make me the most happy.  

I don’t wonder if things would be different if I didn’t have CF, there’s no point.  I have it and nothing will change that.  I think that you’re too analytical when it comes to matters of the heart.  Love isn’t an equation to be solved.  It isn’t logical, it makes no sense, it’s hard, often painful.  I don’t want to feel this way about you.  I don’t want or need a boyfriend who can’t handle the reality of my health.  But I can’t help it, just like you can’t help how you do or don’t feel about me.  I don’t expect this letter to change your mind about it.

Thank you for being honest with me when I asked you to tell me why I’m not right for you.  Knowing the real reasons will help me get past this faster.  I’m not going to rush into another relationship to try and get over you.   

I do still want to be your friend, but it will take time for this wound to heal.  I’ve learned a lot from you, because of you I’ve made tons of new friends.  I’m scared that if you and I aren’t friends anymore they won’t want anything to do with me.  Despite what I said at the beginning of this rant you have a lot of qualities that I do want in a man and having you in my life has made me more aware of those things.

Me, and life, and stuff!

Hello friends!

I just thought it was about time that I sat down and write a really good post about what's up in FrogLand. 

Tomorrow will be exactly six weeks since my hysterectomy.  I feel amazing!  For such an invasive surgery I have to say that the recovery has been pretty easy.  Can I tell you how amazing it is to not be in near constant abdominal pain (my back pain continues to be unceasing)?  A person can only deal with so much at a time and I was at my limit.  If anyone in the Seattle area is need of an astounding GYN surgeon I'll point you in the direction of mine!

My Thanksgiving was great, I hope yours was too (if you celebrate, I know I have some international followers).  I got to spend it will three good friends I already had, and made a few more.  E, you are an fantastic cook and I thank you again for having us over. 

I got to have a second Thanksgiving, or Friendsgiving, at D and E's (a different E) house.  There were 30-ish people there and TONS of amazing food.  It was a great time and I learned that I'm pretty good at the game Cards Against Humanity.  They are hosting a Giftmas party as well and I'm really looking forward to that!  Ugly sweaters and white elephants!

In health news other than the surgery; there is nothing new to report!  No news is good news right?  I'm hoping to make it through the winter without IVs since I ended up doing three rounds in six months this year.  I have a daily cough, of course, but that's nothing new.  I try to be religious about doing my treatments as I should.  Sometimes my back doesn't let me though. 

I could use some more money in my bank account, but who couldn't?  I realize now that once my lease is up on my apartment in the spring I will have to move.  As it stands now I'll be moving in with two of my best friends (I have like, 50 best friends but these two are at the top of the list), B and N.  They have a condo with an extra room.  The arrangement they are offering me would help all of us out immensely.  Its farther outside of Seattle than I would like, mostly due to the fact that I don't drive, but I have to do what I have to do.  As it stands right now if the cat needs to go to the vet (knock on wood) I'd be screwed.  So, thanks B and N for helping a broke frog out.  I've never been the type to care about having shiny new, fancy stuff, but a little bit of security would be a nice change.

I've been dating some, but I seem to be the perpetual victim of the guys who just drop off the face of the earth with no explanation.  I shouldn't say "victim" because I don't feel like a victim.  Yeah, its irritating, but in the end I don't need people like that in my life.  There is one guy that I'm interested in but I'm being patient with him.  I get the impression he needs to come to terms with some things and maybe learn some lessons about life and love before he moves on in the whole dating/relationship world.  I'm not waiting with bated breath, but I also refuse to settle for someone who is less of a man and wonderful human being than this guy is.  Either he will figure it out, or he won't and I will find someone who is just as sweet, funny, creative, and all those other things I look for in a partner/lover/companion.  If nothing else I have a friend for life, no matter what ends up happening I could never resent him or hate him.  He's never treated me badly, never made me feel bad about myself even unintentionally.  He's also made me hyper-aware of what I want and deserve.  He doesn't know that, but I thank him for it anyway!

Really, I guess I just want to say that life is awesome!  Its not perfect but, I'm so happy with the way things are going and what I see in my future.  Life would be boring if it was always perfect anyway!  I'm excited to spend the rest of the holidays with all of my friends, and for making new friends! 

One month post-op!

Its been 4 weeks since my hysterectomy!  I am feeling great considering I had whole organs taken out of my body via a 4 inch incision.  My tummy is still a bit sore so I still have to be a little careful about my activities, but I never expected to be running marathons at this point.  Not that I ever run marathons.

I had my post-op follow up appointment today.  The nurse kept saying that I looked fantastic for only being a month out.  Awesome!  The doc said that I am healing up right on schedule and everything looks great.  I can even go snowboarding after the first of the year!  They said to give that 12 weeks because of falling and whatnot.

 

Uterus, be gone!

Hello out there in internet land!  Just popping by to give you the latest.

For about a year and half I've been dealing with endometriosis.  Its a condition that causes uterin tissue to over grow and grow in places it shouldn't.  This overgrowth aggrivates nerves and is VERY painful.  A few things were tried (hormonal stuff) that didn't work so I was sent of to a doctor who specializes in pelvic pain.  This doc tried one more hormonal treatment called lupron.  It was great!  Wow!  No pain at all after I had been on it for a couple of weeks.  This is not a medication that can be used longer term so the hope was that after three months of it the endo would be beat back enough that my regular birth control could keep it in check. 

Sadly, that did not turn out to be the case.  Within six weeks of stopping the lupron I was having pain again.  The specialist that I saw told me flat out that she was so concerned about my CF being an issue that she would not operate on me, which is what I would need to deal with the endo for good.  Uhg.

Right about that time my mom was diagnosed with ovarian cancer.  She was sent to Seattle from eastern Washington for her surgery.  Mom is going to be fine, her cancer has a 95% cure rate with surgery alone!  While mom was here I met her surgeon and he seemed fantastic, as did the rest of the staff who took care of her at the hospital!

When things had settled down a bit in my life I marched into my general practitioners office and asked for a referal to mom's doctor.  After listening to my reasons for wanting it my doc put it through!  A couple of weeks later his office called me and was ready to schedule surgery the following week!  While I was very impressed by that I told that I needed some time to get this organized.  So it was scheduled for the second week of October.

Well, last week I had my total hysterectomy!  I no longer have a uterus, ovaries, or felopian tubes and this is just fine by me!  I spent two nights in the hospital with wonderful nurses who were only concerned for my care and comfort!  They brought a vase for the flowers that someone gave me, they offered my mom coffee and juice, they made sure that my pain was under control and that I was eating.  Seriously, I have never had a better hospital stay!  There was no worrying about getting my meds correctly and on time, the nurses would just magically appear with the right thing at the right time.  Someone came right away any time I needed help with something.

I am now recovering at home with my dad taking care of me, and the cat of course.  I'm almost off of the heavy pain meds entirely and getting around pretty well.  Dad will be going home on Saturday but after that I have tons of friends that are willing and able to help me when I need anything!  It seems weird to say that the most invasive surgery I've ever had has been one of the easiest to deal with, but its the truth!

Summer, be gone!

Sorry for the lack of posts.  This summer has been, in a word, hell!  I've had to take a step back from some things (this blog for one) in order to deal with others. 

At the beginning of the summer I went on 3 weeks of IV antibiotics.  That was rather uneventful which is always good.  It was, as always, exhausting and painful but nothing unusual happened.

Right as I was finishing that up my mom was diagnosed with ovarian cancer.  SCARY!  My parents came to Seattle for her surgery because they live in East Bumblefuck.  Before the surgery they didn't know it was cancer 100% even though the surgeon was pretty sure.  While mom was under they did a quick test on the tumor and, yup, cancer.  So they opened mom up some more and poked around looking for more tumors.  They didn't find any, YAY!  The tumor was about the size of a grapefruit and had just started attaching to her pelvis.  They dug out a chunk of her pelvis to be sure they got rid of that.  The plan was for mom to have six months of chemo.

It took about another week for the full pathology on the tumor to come back.  It turns out that they caught it very early, YAY.  It was also a very rare cancer that when caught early does not require chemo, SUPER YAY!  So mom doesn't have to deal with any of that mess!

Right as mom was getting this awesome news, word came down that a good friend of mine who had been dealing with breast cancer for a year and a half was stopping treatment.  She passed away on August 1st.  This was very hard for me.  Lisa was such a good friend and all around amazing person.  She was only 34, much too young for this!  The unfairness of it was almost too much for me.  Of course, there was the relief that she wasn't suffering anymore.  However when someone dies we're always a little selfish in that we just want them back with us. 

Not too long after Lisa died I had a dream that I got a tattoo of a pink daisy at the top of my right boob.  Pink daisies were her favorite flower and her cancer started in the top of her right breast.  I knew right away that this will be my next tattoo.  I'm currently shopping for an artist to do it.

The week after Lisa's memorial service I had to go on IV antibiotics again.  I only made it two months between rounds.  That had me pretty down for a while.  Now I'm starting to feel like my MAC might be back too.  I'm waiting on test results for that.

One of my CF friends passed away last week.  This is always hard.  I wasn't super close with him and I think, still a bit numb from Lisa's passing so it hasn't really hit me yet. 

So, as you can see its been a rough summer.  There have been some good things too, but right now I'm still in a place where the bad is easier to see.

Internet Dating 101

Internet dating.....where do I start?  Its clearly a part of life these days.  Its not going anywhere.  However; there seems to be a disturbing lack of etiquette!  So, I'm going to outline some things that should and should not be done based on my experience!

1: Read the profile of the prospective date.  All of it.  Bonus points for actually retaining some of the information included in it!  If you have trouble retaining such things then revisit the profile as needed.

2: If you are interested in the person send them a message that includes some information about yourself.  "Hi" is not sufficient!  Extra points for paying the person a compliment.

3: Don't send a vegetarian a photo of your barbeque covered in chicken legs (someone actually did this to me!?).

4: If, during the course of the electronic conversation you feel that you are not clicking with the person, just say so.  Don't just disappear off the face of the earth.

5: If someone tells you that they aren't interested then don't message them again.  You will get blocked.

6: If you progress to the point where you would like to have a date with someone, for the love of Jeebus don't stand them up.  You are an adult, act like it!  If you can't make it for some reason then call the person.

7: Do not start calling the person "hun" or "baby" before you've met.  Don't start with that before you're actually seeing each other on a regular basis!

8: Always meet the person in a public place for at least a few dates.  Note the word MEET.  Do not offer to pick someone up at their place or give them a ride home.  Creepy.

9: Can we please do away with the bathroom mirror pics and duck lips?  Thank you.

10: Do not send unsolicited pics of your genitalia.

11: Do not ridicule anything in my profile or try to change my beliefs on things.  Instant block.

12: If you really want to date me, act like you're interested in ME.  Yes, I want to know about you but you don't need to make all your messages about how wonderful YOU are.

13: Have a picture that accurately represents what you look like.

14: Be honest.  I don't need to know every detail of your life but "fudging" things is lying.  

I will add more as it comes up.

/rant

So even though I finished two weeks of oral antibiotics a week ago I'm not feeling so hot.  I called today to ask for IVs.  I just got off the phone with the doc.  We're running out of options of things to treat me with.  Wonderful.  My options are : immipenem or merropenum (both of which are famous for lowering the thresh hold for seizures and I had a bad reaction to merro in the past), tobramycin (which they almost never use on me because I have some minor hearing loss that I doubt is even related), zosyn (which I had an allergic reaction to last time so it would require I get desensitized to it in the ICU), or one of the cefs (ceftaz or cefipime).  So I'm going on ceftaz, cayston, and oral cipro.  Joy.

The doc acted like he was listening to my concerns but then just blew them off.  I just....uhg!  I have a track record of going on and off IV antibiotics when they don't take a chance on them with me.  I'm supposed to go to Oregon in a month.  I don't want to be doing this back and forth shit while trying to take a trip too.

I want to move to a place that has doctors who are willing to be a little bit risky if it means I will do better!

/rant

My Invisible Illness

Here are 30 things about my invisible illness that you may not know:

1. The illness I live with:  cystic fibrosis
2. I was diagnosed with it in the year:  1981
3. But I had symptoms since: 1981
4. The biggest adjustment I’ve had to make is:  going on disability.
5. Most people assume:  I'm very non-functional.
6. The hardest part about mornings are:  breathing treatments.
7. My favorite medical TV show is:  ER.
8. A gadget I couldn’t live without is:  my vest!
9. The hardest part about nights are:  more breathing treatments!
10. Each day I take 30+ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have had great results with massage and acupuncture!
12. If I had to choose between an invisible illness or visible I would choose: invisible.
13. Regarding working and career:  can't do it anymore.
14. People would be surprised to know:  I wouldn't give up my disease if I had to give up everything it has taught me.
15. The hardest thing to accept about my new reality has been:  this has always been  my reality.
16. Something I never thought I could do with my illness that I did was:  live on my own.
17. The commercials about my illness:  there aren't any.
18. Something I really miss doing since I was diagnosed is:  I don't feel like I've missed anything.
19. It was really hard to have to give up:  sports.
20. A new hobby I have taken up since my diagnosis is:  doesn't apply.
21. If I could have one day of feeling normal again I would:  I've never felt normal, I wouldn't know what to do!
22. My illness has taught me: what is important.
23. Want to know a secret? One thing people say that gets under my skin is:  you're so thin! 
24. But I love it when people: treat me just like anyone else.
25. My favorite motto, scripture, quote that gets me through tough times is:  "This too shall pass."
26. When someone is diagnosed I’d like to tell them:  Its not the end of the world!  Life is wonderful!
27. Something that has surprised me about living with an illness is:  I don't know any other way to live so: NA.
28. The nicest thing someone did for me when I wasn’t feeling well was:  house work.
29. I’m involved with Invisible Illness Week because:  I have 3 invisible illnesses!
30. The fact that you read this list makes me feel:  hopeful that maybe you understand things a little more.

*face palm*

I seriously cannot believe that I did this.  I started oral antibiotics last week and at the time I had a few days worth of my pills left in my pill organizer.  I went through those but never bothered to refill it because sometimes the antibiotics and my vitamins upset my stomach.  Well, my antiepileptic usually lives in its little pill pod waiting for its turn.  I, uh, forgot about.  For three days.  Big surprise, I had a seizure yesterday.  I think I still had enough in my system to make it a smaller seizure than my past ones.  I wasn't completely out of it all day long like in the past. 

When I woke up from my long nap my laptop was on the floor upside down, the bathroom door was closed (I never close it because the cat's litter box in there), and I had hit my on something at least twice.  I have a couple of sore spots on my forehead and the top of my head.  I don't remember doing any of this but the cat certainly didn't do it! 

I called my doctor but since this happened because of human error, not breaking through my meds, they aren't going to change anything right now.  I'll have a clinic appointment on June 1st where I'm sure I'll get scolded.

Vegan update.

This vegan thing ain't so hard!  Today I embarked on a quest to Whole Foods for vegan noms.  I got some veggie burgers, "cheese", "mayo", and "bacon" and made myself a yummy cheese burger when I got home.  A vegan friend introduced me to Veganaise, a vegan form of mayo.  Its great!  It looks and tastes just like regular mayo but it doesn't have eggs.  The same friend also pointed me toward Smart Bacon.  Cooking this stuff will probably involve a bit of a learning curve but it wasn't bad.  Even the cat liked it and the chunk of Boca Burger with "cheese" that I accidentally dropped on the floor.

Tomorrow will be my first adventure with milk substitutes.  I got a soy milk and an almond milk to try, also a soy creamer for my coffee.  Stay tuned for how those test out!

The vegan experiment.

Question: Can a CFer be vegan without negative health consequences?

I propose to find an answer to this, at least for me. I don't want to be preachy about my reasons for wanting to do this but, since people will want some kind of explanation I'll just say that I have a strong moral objection to the way animals are raised and especially slaughtered in this country. If you want details on the way this happens then I invite you to visit our good friend Google. Or read Skinny Bitch, the list of things I would do to get those visuals out of my head is LONG.

So, the issue is; how do I manage this and not completely screw up my nutrition? In case you didn't already know CFers have special dietary needs. Basically the CF diet is: EAT ALL THE THINGS! Seriously: high calorie, high fat, high protein. So, how to eliminate animal products but replace the calories, fat, and protein?

Protein: Non-animal protein sources are abundant. Protein hangs out in all kinds of things you wouldn't normally think of. Many whole grains have a decent amount, not to mention the fiber in them! Beans are another good source. Also nuts!

Of course there are all the soy products available these days. Soy milk, yogurt, and tofu are all packed with protein. I personally don't care for soy milk but tofu is great! It doesn't taste like much by itself so it just picks up the flavor of whatever you put it in. Some people are turned off by the texture of tofu but soft tofu just about disintegrates so you won't even notice it. You can even use silken tofu as an egg replacement in baking. It works best for recipes when the finished product is supposed to be dense like brownies or "cheese"cake. I haven't tried making a vegan cheesecake yet but its on my list.

For most people I wouldn't say you need a protein powder suppliment because generally people think you need way more protein than you actually do. For CFers though its probably a good idea, if you want vegan though just make sure you read your labels.

As far as fat and calories go the best thing I've found so far is coconut milk! It has loads of fat in it and is fabulous in smoothies! The really thick stuff can even be whipped like cream. I put it in strawberry crepes and I have to say it was deeeeeelish! Avacados are also a great source of fats, and yummy too! Nuts are a good source of fats too.

So far I've been vegetarian since I moved into my new apartment at the begining of this month. That means I haven't eaten anything that an animal was killed for. I'm working on cutting back on my dairy. I know that its important for me to make this transition slowly so as not to upset the GI Gods. CFers have touchy GI systems. I have less of a problem with dairy than I do meat and other things that animals are killed for. If I find that I cannot totally cut out dairy without losing too much weight then I will stick with locally produced, organic milk from farms that have good reputations for treating their animals humanely. I might even go visit some farms just to see for myself.

Stay tuned for further developments on the Vegan Experiment. I've set a goal for myself to be totally vegan by the first of May.

Hmmmm.

J and I broke up a while back. We were fighting too much. I was tired of all the negativity.

The hardest part for me was knowing that he loved me more than I loved him. That's not anyone's fault. I always seem to get into those relationships where one person has much stronger feelings about it than the other.

I've been in love. I mean the really romantic, passionate, movie kind of love. Its out there, it happens. That's what I want to find again. I want sparks to fly when we touch each other. I want it to hurt if we're apart. That's how I've known when it was real before. The times we were separated were actually painful.

I don't really know where I'm going with this. I just needed it out of my head I guess.

The Wind by The Fray

If you click on the title of this post you will be able to listen to the song.

I've been listening to The Fray for a couple of years now. They're music is very easy for me to relate to and I like that. If I can't make some kind of a connection to a song or artist the I usually won't like it, or I get sick of it quickly. I just saw them live last week and I have to say it was probably the best concert I've ever been too. Seeing them perform you can tell they are very passionate about their music. They interacted with the crowd too, which I love to see. It tells me that they appreciate their fans.

I've find myself going back to this song since the concert. Here are the lyrics:

The Wind from The Fray

Oh my God, think I’m lost at sea

The silent waves are my company

And I lost the land between the sky it seems

And wondering, “Will the wind ever come free?”

Yeah

Cause I don’t know, I don’t know where I am

Can yu tell me, will I break or will I bend

Will the wind ever come again

Ooh, ooh

I feel the sun coming out, rising from the east

And I see the empire, falling to her knees

And I lost the land between her and me

My troubles are gone if the wind ever comes free

Yeah

Cause I don’t know, I don’t know where I am

Can you tell me, will I break or will I bend

Will the wind ever come

You left me on the shoreline

You will stand and bare

But you, I’ll find you waiting

You were waiting for me, waiting for me

Tried to kiss the emptiness

Lost the line between sky and sea

I feel the sun coming up, coming up, coming up, coming up

But I don’t know, I don’t know where I am

I will break or I will bend

Will the wind ever come again?

This reminds me of the times in my life when I've felt lost. There haven't been many of them and its always involved the loss of someone I loved. Not always a loss because of death, but those were the worst times. I don't talk about it much but my first love died and a part of me went with him. He will always have a place in my heart and I still miss him.

After something like that happens you really do feel lost. I would find myself walking through a store and I'd go from one end to the other but not remembering anything in between. For a long time I literally didn't know what to do. I wondered if anything would ever be able to get me out. And I wondered if I would ever feel that way about another person.

Eventually I did find my way back and learned that love is not always a once in a lifetime thing. I'll always carry around the pain of that loss, and of all the others, but I am better for having known those people and sharing my life with theirs. I wouldn't trade the pain of losing them if it meant that I never knew them.

I don't know what happens we die, but I hope that whatever it is I get to see Warren, Courtney, Paul, Eva, Jenn, Ginger, Shawn, Sandy, Gess, Mel, Tom, Ted, my granny, and grandpa again.

Sorry if this post is depressing. Its not meant to be. I'm feeling reflective right now.

R rated fundraiser anyone?

So, I may have mentioned it here before, but there has been this idea for a CF fundraiser banging around in my head for years. I want to see if there would be enough interest in it to make it worth pursuing. For the record I totally advocate going after what you want eleventy million percent!

Here's my idea! Everyone is familiar with the firemen calendars right? You have a bunch of incredibly sexy, half naked firemen doing what they do in the pics and then they sell the thing to raise money for burn victims. HOT! My idea would be something similar, but for CF. It would be semi-naked CF women doing what we do (treatments, IV meds, etc and so on) and it would be sold to raise money for CF research and/or medication/financial assistance programs for CFers.

Some ideas I had for photos would be someone tied up with oxygen tubing, someone sitting on the compressor for their vest suggestively, ports being accessed while wearing a corsette or something. You get the idea! I'm even willing to do all the shots myself, which would probably be easier than trying to find a minimum of 12 CF women will do this. The models would likely be all over the country (world even!) and that could turn into a big hassle.

I would need a photographer willing to donate their time (I already have one in mind that I could ask). The big thing I would need is a printing company willing to donate the production of the calendars or monetary donations to pay for it. I'm on disability and it doesn't exactly pay well so I couldn't do this out of my own pocket.

So what I want to know from you all out there in internet land is A: would you possibly be willing to donate to the making of such a thing, and B: would you buy it once it was done?

There are several reason why I've wanted to do this. First, fundraising is awesome, yo! Second; I like the juxtaposition of the whole thing. I think I can pull off sexy + clinical and make it work. Third: CF fundraising focuses very heavily on kids. Which is fine, whatever brings in the cash. The thing is that people still tend to forget that this is not just a kid's disease anymore! Adults with CF are confronted with different things and one of those is sex and sexuality. Do you know how difficult it is to get in the mood for some sexy times when there is a needle covered by a giant band aid in your tit!? I do! So I hope that something like this would bring a little more attention to some of the things that adult CFers have to deal with.

So, leave some comments and tell me what you think. Yes? No? Advice? Constructive critisism? I welcome it all. And please, pass the link to my little bloggy along so others can weigh in.

CF Food!

Take everything you ever learned about proper caloric intake, portion control, and limiting fats, do a 180 and that's a CF diet. Eat a lot, eat often, eat butter, cream, milk, and anything else fattening.

My mom used to make this stuff for me and my brother. Its perfect CFer food. It has lots of calories, tastes great even when you're sick and its easy to make.

What you'll need:
A large container of cottage cheese
A tub of Cool Whip
Mini marshmellows
A can of pineapple (I like tidbits but you can use anything except rings for this)
A packet of your favorite flavor of Jello

Your weapons:
A large bowl with a lid
A big spoon for stirring

Let your Cool Whip thaw out so its not a solid lump. Drain the juice off of your pineapple. Dump all of your cottage cheese, cool whip, and pineapple in your bowl. Throw in some marshmellows, whatever will fit. Stir that shit up! When its all evenly mixed smooth out the top. Cut just the corner off of your packet of Jello. Sprinkle it over the top of your slop. You won't need anywhere near the whole packet. You can save it for your next batch if you want to. Eat up!

This makes quite a lot of stuff, so you can halve it if you want to. I don't, it keeps just fine in the fridge for a couple of days so I can finish it off before it goes south.