Thank you oh so much for ditching me you bitch! If you changed your mind about our plans then you should have fucking said so, but this just shows how childish you are. I was ready to go, I called you how many times? And not one fucking word from you.This year was not an easy one for me, and you know that. This year marked the end of my marriage, the realization that my lungs are finaly rotting in my chest no matter how hard I try to keep it from happening, a surgery, and the unbelievable pain of having the new man in my life half way around the world for half the year. I guess it was too much to ask to celebrate the end of this year with someone I thought was my friend and the man I care so much about. Go fuck yourself.

Am I going to hell for this?

So my apartment office has been closed for days due to the massive amount of snow we've had and the fact that this state just isn't prepared for it. Well.....my boyfriend's Christmas presents and my enzymes are sitting in the office. Uhm....I called the emergency maintanence number and told the guy that I desperately need my medications, which is a lie. I am not in danger of running out, but I really want to be able to give my man his presents. Am I a horrible person. I mean it isn't exactly a lie, I really do have meds in there, I will need them at some point but I'm good for like a week or more without them. Oh well, I don't particularly care.

Yeehaa!

I was cleared by my orthopedic surgeon today! *See previous posts about the shoulder.*

He said my recovery has gone really well. I don't need any more physical therapy, but I do need to continue my home excersises for a while, which I can live with.

He's a really great doctor.....too bad he isn't my pulmonologist. As good as he is, I hope I never need his services again.

How hard is it!?

Honestly, how hard is it to get in to see a god damn doctor? Its not like I enjoy having freezing cold instruments inserted into parts of my body where nothing cold should ever go, then having my cervix scraped after hearing "this may feel a bit funny." Oh really!? A bit funny, huh? I'll make you feel funny with my foot in your face! The least they could do is have the courtesy of getting me an appointment soon so I can get it over with.

I wanted to establish care with the internal medicine department at the hospital where my CF clinic is. That way all my records are in one place, none of this having to deal with getting everything transfered. But they are "estimating" that they will have new patient appointments in SPRING OF 2009!!! What in the hell is that!?

So instead of going back to the doctor who wouldn't give me the birth control I wanted, then proceded to give me an enormous ugly scar on my back from sinking 4 stitches so deep that they had to be dug out, I decided to switch to a different doctor at the same clinic. Shouldn't be too hard right? WRONG! I have to establish care with the new doctor at one appointment and then get my cervical scraping at another one. What is this establish care crap? They take my vitals and my medical history, which they already have on file since its the same clinic. Then they bill my insurance a few hunfred dollars for it. Fabulous. What better way to establish a relationship with your new doctor then spreading your legs and letting them have a good look? This is the American medical system for you!

Post Thanksgiving Curse

I'm cursed, I'm totally convinced. Five or six years ago I got the flu on the Saturday after Thanksgiving and was SO sick. Last year I had my appendix out on the Monday after Thanksgiving. Today I had a tooth pulled.

I woke up this morning and just KNEW that my tooth was abcessed. I've had them before and it hurts SO much! That whole side of my face hurt and the tooth itself was throbbing. There is a dentists office right across the street from work so as soon as they opened I was on the phone with them. They were able to squeeze me in thank you diety of your choice!

After I had filled out all my paperwork they got me back and took x-rays and did a cleaning since it had been a while since my last one. The doctor came and looked at the films and did an exam and sure enough, I had a big infection in there. He said something about a root canal and I said NO! I don't do root canals since my teeth are already weak and root canals make them weaker (they essentially kill your tooth). So he asked if I wanted it out today. I said yes but was thinking "no, I just love walking around with half my face in severe pain, by eye ready to explode, and my tooth throbbing so bad I can't eat"!!! This is dripping with sarcasm of course.

So he gave me novacaine or whatever, saw another patient while that kicked in, came back and gave me a little more novacaine, did a deep cleaning of the area, and pulled it. It didn't hurt at all. He squirted some antibiotic stuff in there and put some gauze in for me to bite on.

I have another one that needs to go so I hope I can get in before the end of the year to get it done. I met my deductable with this one so it would be nice to get the other one done before the new year. I'm just glad I don't have to deal with the pain, good lord it hurt.

My thoughts for today.

I have no patience for people who waist time. Even little time waisting tidbits drive me nuts. I was watching my manager rubber band bundles of cash today. We have to count it every time someone else takes over the vault, so you take the rubber bands off, run it through the machine and rubber band it again. Every time he took a rubber band off he would untwist it. Then when he put them back on he would snap it. WHY!? What does the accomplish really? I think I get this because of my CF. I've watched too many of my friends die to waist 2 seconds snapping rubber bands.

Prayers Please?

He is on his way to the airport right now. His sister is in the hospital with what they believe to be a blood clot in her brain. The family needs him home to sign the DNR. They will try to go in and remove the clot, and if it is successful she will be home for Thanksgiving. If it is not successful then I don't know what will happen.

Although he hasn't specifically said so, I can tell that he is having a very hard time with this. He may be going home to say goodbye to his sister. Any prayers/good thoughts/positive vibes you can offer would be much appreciated at this time. Please also pray for the family during this difficult time.

I deeply wish that I could be with him now. I love this man and to not be able to offer any support or comfort for him is very hard for me. While I am disappointed that he will not be here for Thanksgiving (its my favorite holiday) I am much more concerned for the state of his mind and soul.

Clinic Visit

I went to rhuematology clinic and CF clinic on Monday. The rhuem wrote me a scrip for 3 months worth of massages and "fired" me. Of course I can come back if I need to, but its up to me. So YAY!

My PFTs were UP!!!! In August they were 48% which has been my baseline for about 2 years. This time they were 55%. I think its because I walk to and from work more often than not these days. There is a bit of a hill in the middle of the route to work so its litterally up hill both ways and it gets my heart rate up a bit. But whatever did it, I'll take it!

I did not get O2....at least not yet. They want me to try a c-pap because I have mild sleep apnea. We'll see how that goes. I am not too thrilled with the idea of a c-pap.

Sheesh!

Ok ok! I know its been 2 months, but I was sans internet access! But I am back now and ready to roll.

I moved me and my kitties into my very own apartment. I absolutely LOVE it!!!! It stays clean because there is no pig (ex-husband) sitting around making it messy, its quiet when I go to bed, I can walk around naked it I want!

So, where to begin? In September I had a sleep study. As it turns out my oxygen saturation dropped to 86%. This could explain A LOT. It could be why I sleep like crap, I'm always tired, and why I'm in pain more often than not. When I go to CF clinic on Nov. 10th I will throw a fit if need be to get oxygen at night.

I started physical therapy for my shoulder. I should just have a few more visits I hope. I pretty much have my full range of motion back and I'm just working on strengthening now. My fibromyalgia disagrees with PT on a huge level! Luckily I talked my rhuematologist into massage therapy and that seems to be helping quite a bit.

My man is home! He got home about a week and a half before my birthday, so that was awesome! In some respects it feels like he never left. We talk on the phone almost every night for up to an hour and a half. We see each other as often as we can. Its just great having him back.

So that's about it for now! I promise to keep this updated from now on!

Hohum.

Insomnia returned with avengence this week. Yes, even with my sleeping pills. *sigh* I upped it to 2 pills (I can take as many as 3 at a time) in hopes that it will work better. I did sleep better last night but I have a lot of sleep debt to catch up on. I can't wait for my sleep study!!! I'm convinced that my O2 is dropping.

Clinic visit.

It was a good visit!! Yay!!! My PFTs were back up to baseline which is awesome considering they were down at the end of IVs last month, I'm only 2 weeks post-op for my shoulder (I did really well with that lung-wise), and my sinuses are acting up. I thought for sure they would be down. So that's GREAT!!

Also, I'm getting a sleep study. There are 2 docs at my clinic and for the past year and a half or so I've only seen one of them but today I saw the other one. He had no issues at all about doing the study where as the other doc didn't think it was necessarry and wouldn't order it. So from now on I will be asking to see this doc. He seems to be a lot more receptive to my suggestions. He asked my reasons for wanting the stuydy and thought they were all very valid so he had no issue with ordering it. I'm not sure how long it will take to get in, all the paperwork for the referal has to get done, but I'm excited!

Other than that we just tweaked my vitamin D dosage a bit. See you all in chat tonight!

Updates and good news

So I know I've been slacking on the blogs but I'm a busy woman!
My shoulder is doing very well. I saw the doctor last week and he was very happy with the repair and expects it to heal just fine as long as I'm good and careful with it for a while. I go back in a month to see if I need physical therapy or not. I was instructed that I should be able to raise it all the way up with my passive excersises (not using my muscles, just a pulley thing I have rigged up so that I can hold on and use my right arm to raise my left) by the end of this week. Well I already can. So I figure I'm ahead of schedule.

This weekend is my grandparents 60th anniversary party in Oregon. I'll get to see a lot of family I rarely get to see and some cousins that I haven't seen in ages. So that will be fun.

I got an apartment! Well, I don't take pocession until the end of the month but I got approved. I move in on the 31st. I'm really looking forward to having a place all to myself. No one else to clean up after, it will be QUIET when I'm trying to sleep. I can have whatever I want to eat whenever I want it. And I can walk around naked all I want!

The last thing I need....

....is a suicidal brother. But that is exactly what I have. Long story shortened a LOT....he was dating some girl he works with and she was a nut job, so they broke up, then yesterday she was running around talking about her new boyfriend. So my brother left a suicide note on his managers desk. The manager called me today since I'm his emergency contact. I called our mom and found out that his shrink checked him into a local hospital. So hopefully he will get help.

I dealt with a suicidal husband and I really don't need to do this again. Suicidal people don't really realize how big of a burden this is on their family. They may come to realize it later, but in the moment they are so focussed on their own perceived suffering that they can't think of anyone else. And I will pretty much get to carry this myself since my parents aren't very close by. Thank you so much.

Fibromyalgia

Fibromyalgia is: Fibromyalgia (pronounced fie-bro-my-AL-juh) is one of the most common chronic widespread pain conditions. The condition affects millions of people in the U.S.
The causes of fibromyalgia are still not fully known, but recent data suggest that changes in the central nervous system may contribute to the chronic pain of this condition.

And I have it......yay.....

I went to my rhuematologist again and yep, sure enough we're going with fibromyalgia. He still thinks I may have some arthritis going on as well but not sure how much. So once I am off pain meds from my surgery then I am going to take low doses of prednisone for 10 days. If I have a dramatic improvement then its more arthritis, if not then its the fibromyalgia.

If the prednisone works he gave me a scrip for some other stuff to take that is not an immune suppressant. He also gave me instructions to give to my physical therapist once I start going for my shoulder. He wants me doing light, low-impact excersise and gradually build up to more difficult stuff as I tolerate it. I forgot to ask about accupuncture, but I will email him for that.

My surgery.

Everything was fine. They gave me a nerve block in pre-op so my whole arm was numb until about 7:30 last night. Usually they use a stronger block that lasts at least 12 hours but that paralyzes the diaphram. Obviously with my CF the anaesticiologisy (sp?) didn't want to do that. I think I would have been fine without it though, the pain is not bad at all. I'm just taking half a percocet. The med they gave me to relax me right before doing the block was fun though. It made the picture on the wall dance and swirl. I was so busy watching it that I didn't notice the injection in my neck at all.

Neighbor's Suicide

I came home today and Brian (my soon to be exhusband who I am living with for another month, long story) said that our neighbor had committed suicide yesterday. Brian looked pretty upset about it. All I could think was how dare you be upset! He put me through hell with his suicide attempt, I would think he'd be happy for Gary.

Ok, that's pretty twisted I realize this. But come on! Brian didn't even want to get help afterward. The only reason he did was because I said I would leave him if he didn't do something. I ended up leaving anyway. The last 8 months before I told him I was done were some of the worst in my life. And he has the nerve to be upset over this guy killing himself?? If he wants to be upset be upset for his wife!! In a few days I am going to stop by and let her know my story and that I am here if she wants to talk.

If this woman was half as miserable in her marriage as I was in mine then I truly feel for her. Even more if this was all a suprise to her. Part of me knew that day that I got a call at work that Brian had been taken to the hospital that he had hurt himself somehow. And I was right. I really realized how unimportant I was to him that day. To me there is no more selfish act.

Obviously I am still angry and bitter over the whole thing. Who wouldn't be? There are days that I wish he had been successful. At least then I would have been taken care of for the rest of my life. I would have military widow's benefits plus his life insurance. That would have been the nicest thing he ever did for me.

Surgery

So the day after tomorrow is the big day! I get my shoulder fixed! I suppose I should fill you in on why this happening.

In high school I was an avid volleyball player, I LOVED it! One day at practice I dove for a ball and felt one of the things no athlete ever wants to feel. The ball of my shoulder was ripped out of the socket. I had landed at a weird angle and twisted my arm around. I almost blacked out from the pain. When I stood up it slid back into the socket, again NOT a pleasant feeling. I went and told my coach what had happened. We got some ice on it and I sat out for the rest of practice.

Luckily that day I had an appointment with my chiropractor who was also a licensed physical therapist. He examined me and said I was going to be in some serious pain the next day. I didn't feel much at the time because I was warm from practice but I had strained muscles in my chest, back, neck, and side because of the force it took to pull my shoulder out. I was in very good shape at the time so my muscles should supported my shoulder. But I had twisted my arm with such force that it popped out anyway.

A few years later I was swimming and not even thinking about made a similar twisting motion with arm to try and get something off the bottom of the pool. There went my shoulder again. I came back up and my arm was just floating on the water and I couldn't move it. I flipped out. I started to get out of the pool and when the water was no longer supporting my arm it went back into place. I remember the grinding feeling and the crunching sound it made. To this day that still gives me the creeps.

Fast forward about 9 years. I was always very careful with my shoulder. I obviously didn't want a repeat. Unfortunately I woke up one night and I was laying on my side with my arm above my head. This wasn't real comfortable so I started to roll over and it felt like someone was trying to rip my arm off. I'm not sure if it actually dislocated again or not (I take sleeping pills so I wasn't real with it mentally speaking) but I do know that I hurt it bad. This pain was worse than the first two times combined. This happened on a Friday night and it hurt all through the weekend but I was still able to function. On Monday I got into one of the family doctors and my primary care physician's clinic.

This doctor was of no help at all. I told him my entire history with this shoulder and he pretty much blew me off. Apparently he thought that since I had never had to go to the ER to have it popped back in that I couldn't have dislocated it. He kept talking about pinched tendons, but the ones he was talking about are on the front of the shoulder and I was having pain in the back. I was NOT happy when I left that clinic so when I got home I looked up orthopedic surgeons on my insurance company's website and called one of them.

I got lucky and got a very down to earth doctor! He listened to me, asked me lots of questions, and gave me a good exam. The exam showed that my left shoulder was significantly weaker than the right. He could also tell that the joint was "sloppy", the ball of my shoulder just kind of slid around and wasn't really held into place normally. He told me that he wanted to get an MRI (he was shocked that no one had ever ordered an MRI on me before) and that he expected that my cartilidge was torn.

A couple weeks later I had my MRI and then met with the doctor again. Sure enough, torn cartilidge. So there it is, the story of my bum shoulder. I can't wait to get this over with, it hurts pretty much all the time and just reaching for the phone at work it feels like its going to pop out again.

My personal CF journey.

How did I come to learn I have CF? Well we can all thank my brother for that. He was born with and obstructed bowel that actually ruptured. He was very near death and had 16 hours of surgery on the first day of his life. Mom didn't get to hold him until he was a week old. These issues are fairly common for CF babies so he was tested. This was before genetic testing, so they did the sweat chloride test (basically to measure the amount of salt in his sweat). It was positive.

At this point my parents decided not to rish having another child that could have CF.....little did they know that I was already on the way! My parents have never been sorry that I was born though. Mom says she knew I had CF before I was tested because of the stuff I would cough up, and sure enough my sweat chloride level was off the chart. She doesn't remember the exact number but it was very high.

As I kid I always knew I had CF, what that meant, and that it is fatal. That is probably the best thing my parents ever did for us, being honest. I remember telling kids at a very young age that I have a disease. Some of the kids would get scare, but I just told them that it wasn't contagious and we would continue with our game.

When I was young there was a regimine I had to follow every day, but I didn't feel like it made me a freak or anything. In the morning mom prepared out nebulizers (nebs) and then did therapy on us (chest physical therapy, CPT, to loosen the thick mucus). Then we went about our day, taking our enzymes with food. It was normal to me. I caught cold frequently as a kid and that was the worst, just being sick. But I never had to go to the hospital like most CF kids. We went to our CF clinic every six months (we lived in central Oregon then and clinic was in Portland so it was a 3 hour drive). And that was my life.

I went to CF camp 3 years, and I must say I didn't care for it too much. I missed my friends at home. But one year I got to help teach the kids how to use a PEP. It was a brand new device to replace CPT. How wonderful! Mom had taken us to Seattle to get it since they had it before the clinic in Portland did. We still did CPT when we were sick since it helped get out the extra thick stuff better.

When I was abot=ut 16, shortly after we moved to Washington, I discovered a web site for people with CF. This opened up a whole new world for me! To be able to talk to OTHER people with CF was fabulous. I learned a lot there and made many great friends. I have always been considered fairly "mild" so it was interesting to me to talk with people who had gone through more than me. Sort of like having a crystal ball.

I started realizing that my CF was getting worse when I was about 21 or 22. I would get short of breath just walking to the bus station which was only two blocks away. I asked my doctors to try pulmozyme. Its a nebulized treatment that breaks down the mucus in the lungs making it much thinner and easier to cough up. Unfortunately it didn't seem to help much. Then I participated in a research study that used hypertonic saline for sputum induction (in english: I inhaled salt water to thin out the mucus so they could get a good sample). I was horrified at the amount of stuff that came up! I had no idea that it was even there! I was on the phone instantly with my doctor getting a perscription. The HTS has done very well for me!

I kind of went along just fine for a few more years. I would have the occassional cold or sinus infection, even got the flu once, but still nothing serious enough to get me a trip to the hospital. Then in November 2007 I was exposed to mono and caught it. The doctor was worried about me getting a secondary infection and ordered me to stay home for 10 days. I got that infection anyway and went on oral antibiotics. Those seemed to help a lot and I was feeling pretty good when the Sunday after Thanksgiving I went to the emergency room with minor abdominal pain. I figured it was probably an ovarian cyst but wanted to be checked out since it was on the same side as my appendix. Well, it turned out to be both and I found myself being taken to surgery at 5 the next morning.

Going under general aneasthisia is hard on anyone's lungs, but for someone with CF still recovering from an infection its asking for trouble. I just didn't seem to bounce back. On Christmas day I coughed up sputum streaked with blood for the first time. That was the deal breaker. I contacted my CF clinic and told them that I thought it was time for my first IV antibiotics. They set me up with the PICC team (PICC=periferally inserted central catheter, and IV line that is inserted in the arm and runs up a vein to your heart) and the home health care company. Luckily many CF patients these days are able to administer their own IV meds at home thus saving a trip to the hospital. Insurance companies usually prefer this too, saves them money. Plus hospitals are filthy and CFers don't need that exposure.

The IVs worked very well for me and my only regret was having waited so long to do it. After this I decided it was time to get more aggresive. I asked for a vest, a CPT device that you strap on and it literally shakes the musuca loose. I asked to start using another nebulizer, Tobi, and antibiotic to help keep the bacteria in my lungs under control better.

I just finished a second round of IV antibiotics in preparation for shoulder surgery (the story behind that another time). I don't want to end up with another out of control infection from surgery again. These days my lung functions (PFTs) are about 46-50%. Not as good as I would like, but I should have been more agressive a long time ago. Now I tell everyone I can to not sit back and wait for your doctor to tell you, ask them! I am hoping to be able to quit working and go on disability by the end of the year, or begining of next. I need to be able to take more time to focus on my lungs and hopefully get them in better shape.

What is cystic fibrosis (CF)?

FROM THE CF FOUNDATION'S WEB SITE www.cff.org

What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including: very salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; poor growth/weight gain in spite of a good appetite; and frequent greasy, bulky stools or difficulty in bowel movements.

Statistics
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 40% of the CF patient population is age 18 or older.
In 2006, the predicted median age of survival was 37 years.

Introduction

I'm Jess, 26 years old, in the Seattle area and I have cystic fibrosis. But this in no way defines me.

I created this blog partly to help spread the word about CF, but also just to have somewhere to lay down my random musings on life.

So more about me. I work full time as a teller at a check cashing place. Its not the greatest job but its pretty low impact and the benefits at my company are awesome. I'm in the process of a divorce, seems I unknowly married a sociopath. But I am moving on, in January I met a great guy, we'll call hime Dave (names have been changed to protect the innocent). He's in the military and in March he got deplpyed, so that's been hard. We were only seeing each other for a couple of months when he left. He should be home mid-September.

I have lived in the Seattle area for 11 years and I absolutely love it here. Sure it rains a lot but the people are awesome and its never too hot or too cold. The scenery is amazing too. There are mountains all around, the Puget Sound for your whale watching pleasure, and green as far as the eye can see! Lets not forget the amazing coffee. Yes, the stories are true, we are coffee freaks around here!

That's all I can think of for now.