Saturday, November 28, 2009

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.

Tuesday, November 24, 2009

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.

Saturday, November 21, 2009

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!

Tuesday, November 17, 2009

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!

Thursday, November 12, 2009

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!

Saturday, November 7, 2009


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.

Monday, November 2, 2009

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!!

Sunday, November 1, 2009

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.