Helpless

There is no limit to the ways of mulling about CF when you have it. Or should I say.. at low lung function. At least for me there isn't (hence, the birth of this blog). There's so many ways that things can not feel right, or fair, and you just sit there feeling helpless until you come back around to realizing that despite it all you must keep on with everything you can possibly do.



A couple of days ago, as I continued to fulfil my new regimen of exercise, extra physio, cooking more, etc etc.. Everything I've been aiming at.... I coughed up a bunch of blood. This isn't the biggest deal when it comes to CF, but for me, this was only maybe my 4th time ever doing this. Probably 3rd or 2nd with the amount I brought up. I am still lost with how to react to this. The doc's warn against large volumes or repeated sessions as the "danger" to worry about and address.. but I always feel like I'm doing something wrong when it happens. In this case, I was thinking too much physio(interesting how when I didnt do physio at all--almost my whole youth--I never got hemoptysis).. too much irritation. So what do I do, stop? How can I know whether the lung tissue damage that is resulting in the bleeding is more or less harmful than the mucus buildup ill create by halting my therapy for hours/days/a week? I feel so helpless.



Then there's the report that came in the mail today. I had to apply for CPP when I went on work disability. Dr.T just sent me her part of the process and I read it through. I always am in awe when I read my chart or anything about my medical history. It always comes from how I grew up never feeling that such great odds could be against my living a full life. I keep wondering when my awe will end and I will just see myself as someone who must climb impossible mountains to be called a senior. Maybe I never will believe it. Anyways, my chart had one sentence that haunted me this afternoon despite there being nothing suprising in the facts of it. "Median survival when FEV1 <30% predicted is 2 years. Michelle is at 26%"

It makes me wonder what it IS like to be elderly. To know that for certain you will not have more than 'x' years to live. Or does that ever really happen? People who live relatively disease-free would have years of that invincible bliss and maybe it sets in so well that age is no challenge mentally. Who knows. All I know.. is I see those facts written so plainly and for a moment, I don't know what I'm really fighting for. I want to be here as long as I can. I want to be with my husband for so long and have a family and do it all, but if its less that we're allowed.. is it ok to fight so hard when I could spend the fighting hours just enjoying? I feel like this is a terrible post, but every so often, I slip and land in this depressive mental zone about it. Some times I really wish I was dumber and just did what I had to do, and hoped how I was told to hope and that was it.

End of Rant.

The Battle

I'm pleased to announce that I've been keeping strict to my new routine. Extra physio and exercise is going well, and *knock on wood* I already think I feel better. This might even be the longest I've kept up an exercise routine. Granted, I'm only doing about 10 minutes (not even consecutively) on my exercise bike almost every night but its a start. I'll brag about this more when it's been a little longer. I still feel a bit silly sounding proud of it.

Yesterday, in all my good-feeling healthiness, I had to talk to my disability case-worker. I'm on disability through work, so that means I get two years of payment under the conditions that I "can no longer perform my specific job", and then I get reassessed because the terms will change such that I must not be able to perform ANY job in order to get paid. I'm just over a year into this. Apparently, my case-worker and I must discuss my health monthly or so for him to make reports on whether I'm improving, etc... Its friggin frustrating. I can't seem to wrap my head around the idea that they can't just use my test results (that are monthly) and look up CF on the internet and just "get it". I realize that the questioning is there so that other not-so-sick individuals don't abuse the system.. but its difficult to re-explain every month how many minutes I am able to walk for, how much weight I can lift, etc without losing my mind. I'm so anti-lying, and raised to be so strong, that when he says "do you think you are capable of sedentary work" I instantly say yes.

This time he told me that he would like to transfer my file to a lower maintenance type of program. I would no longer be required to talk to anyone on the phone regarding how I'm doing (he must sense my disdain for doing it with him) and would only need to fill in paperwork once a year. I would still need to be reassessed after the 2-year mark to see if I can work, but whatever... He then said this "I am ready to make the transfer, however, I have record of one particular conversation with us that you had where you said you think you would be able to work. This is preventing me from transferring you because the lesser maintenance program is really meant for people we don't anticipate to ever go back to work". I then said this "Before I start, the way I see it, is that anyone, even in a body cast lying in a bed is able to do sedentary work as long as they can speak or use a computer". He laughed and seemed to understand my frustration.

In the end he transferred me. The thing that stresses me out, probably comes down to the way this year has gone. I've lost so so many people I've known with CF. I'm actually glad that I finally had to experience this reality. It's made me look at everything differently, and its partly why I am fighting so hard these days. That said, the year I/we have had has made me worry more. I am happy to try and fight to keep my lungs as long as possible. I miss work alot, but I have seen such great changes in the stability of my health since I left. I don't want to change what is working for me. I don't want to risk my life because some insurance company deems me able to work. I'd rather suffer financially. That's just my two cents. Either way, I'm free of the interviews, and I feel great about that.

Lets start some change... in the name of hope

Life since discharge has been unpredictable at best. I'm so happy to be home but I don't know whats going on health-wise. I don't want to drag out the details, but I've seen coughing up blood, chest pain with exercise, and complete lack of energy in the few days I've been home. I have a month till followup and I've decided to go the route of so many inspiring, blogging Cf'ers and take my feelings about this out on my exercise/physio routine.

My goal looks like this right now.. Every day for the next month I'm going to do an extra physio every day (2 vs my usual 1), swim for 20 mins or more every Wednesday afternoon, use my stationary bike for 20 mins every night, and I'm working on signing up for a weekly dance class too (but that's probably more like next month). Too much? I'm not sure.. but I'll be careful.** note: the previously mentioned symptoms are not constant, but sporadic and all once-occuring only..

In other news, my Grandad who is healing from his recent heart-attack graciously figured out the pattern to my little kleenex-box covers I've been wanting to make and sell, and it seems I'll be up and in production soon. I'm happy about this, but again, its something I'll have to commit to, and thats not really my gig.. committment. Not with hobbies at least ;) .. I'll post a pic of mom's first attempt using Grandad's pattern, versus the originals that were made by my friend of a friend of a relative.. they are close! I can't wait to let mom teach me the ropes of this sewing thing and get started.

Hopefully all my proposed hardwork in the following month will bring an increased/stable lung function, a higher quality of life, and some dough to put towards either a surrogate fund, to support CF, or a little bit of both!

FIN

I'm writing this the night before my pft's only assuming I'm going to be sprung from this joint tomorrow. So basically that means that this post may be a complete waste of time. If ,I in fact am sprung tomorrow this will have been my easiest admission of my big whole 5 I've had ever. Easiest health-wise. I came in ok, feeling great, left at baseline. Bada boom bada bing. It's funny, I look around and I see pre-transplantees and people who are in every 3 months but maybe not so sick lung-function-wise.. and yet.. I'm not grateful. I feel like this is the admission that should be every admission. I feel like I was finally served some general decency by fate. I've worked for this. >

Hi, It's Friday now.. and I'm going home. My pft's were .89... 0.01 lower than what is considered my "baseline" right now.. and equally lower than what I came OUT of the hospital with 18 months ago. I should be pretty happy about my re-gained 60 mL, but I can just tell these drugs didn't do their best, which makes me wonder what I could have achieved. I questioned why in clinic the past 3 times Dr.T used her convincing skills on me by saying 'we have so many drugs to use on you, you're never on iv's and you aren't allergic to anything' and then goes and picks the exact combo I was on last time. The combo that saw me leave the hospital for the first time NOT back to baseline. seriously??

I have talked about this all week with whoever would listen, and I got pretty much the same answer.. The "good" stuff is reserved for when things are really bad and you need to be dug out of it. Fair. I get that. But a couple things come to mind. The obvious one is that I would have been happier with ANY other combo than I got, based on all 4 previous admissions and their results. The less obvious one is that although I am comforted that if something serious should happen they can dig me out, shouldn't part of the goal be to once in awhile see how much farther from transplant they can get me right now? Anyone waiting for transplant doesn't want to be there, and wouldve given anything I'm sure to have an extra year or two before they had to do it. If they use these magical super drugs once, does that immediately mean that they aren't nearly as good the next time (assuming the next time is in, say, 2 years?) or that the lesser drugs also do not work?

Maybe I'm just hoping for too much at this point in my CF life.. I'd love to hear some opinions. Anyways, for now I await my ride home to the life I love and I will go back to working hard to stay there for as long as possible.

Champ--first bloodgas ever

Oxygen is my mortal enemy when I'm admitted. I ride the cusp of really needing it during exercise and sleep, and when im sick even at rest. This time, I'm feeling so good, that my at-rest seems fine. I did my overnight oxymetry (on my second try....I'm not sleeping here so well yet...) and suprise suprise, too low. This morning after a barrage of unnessicary wakeups, I'm told i need the much hated ABG test. AGAIN. Not DO it again, be threatened again. So, long story short... I MADE IT HAPPEN.

Now, I have to digress for a minute to recognize that I do not deserve a medal. Life with CF and lots of other problems involve scarier, riskier, more painful procedures.. but I've always been a little more anxious then the next guy.. and I hope that anyone out there who might be a few paces behind me, can find comfort in reading what I thought of things, because I can't emphasize enough how much of a chicken I am. You can do it if I can.. honestly

The blood gas was FINE. I'm not going to request them weekly or anything, but I can handle it. I requested a drug to make me less anxious (which was ativan) and I found that the only thing it really achieved was lowering my heart rate. Crying and clenching with a slow, rhythmic heart was a weird sensation. Next, i requested the freezing. I was told by my RT that this part is sometimes considered the "worst part".. nope.. finally: to the main event. At this point I gave in to myself a little and held the hand of my nurse while also cuddling a teddy bear.. *blush*... the worst part is waiting for the unknown, and waiting for them to find your darn artery. He went in once to no avail (although DEFINETLY hit a nerve on his way in--pain scale 1-10: it was 4) and then I had to sit and agonize through thinking about it more while he clotted up teh bleeding from that attempt. Second attempt was a success..

If I could describe what hitting the artery felt like.. I'd say this.. This second try brought no more 'hitting the nerve' feelings, and it was mostly like he tapped into something very full and began releasing the pressure, but not intense pressure like I had anticipated. It was more like I could feel the palpitation of my heart as the syringe took its blood (this took seconds). Weird, but mild. A few minutes later, as my RT was holding my wrist tight and stopping the bleeding with some gauze, I started to feel sore. This actually was probably the worst part, (short of the unknown) and it started to reach down my arm to my elbow. I asked if this was normal and he said 'yes, and it will likely get worse as the freezing wears off'. Nope. Within 5 minutes of that, nothing, no pain no tenderness nothing.

Afterwards, I indulged in phoning my mommy to gloat about my victory. My father answered, and as it turns out, I missed a morning phone call about my grandfather having a heart attack. My feeling of achievement fizzled instantly. Luckily, he's ok. I was grateful for a day that brought

positive outcomes to traumatic events on every scale. Love you Grandad!