Saturday, August 7, 2010

walk a mile in my shoes

Long over due for a post, c'est vrai.

so, here is the skinny. some Cf related, some not.

I had clinic back in July and that was uneventful. I think my FEV1 was in the upper 60s, so pretty much normal. I had a great colistin month in July where it actually seemed to be working. Some months it doesn't seem like it does much, but I felt pretty good in July. Now it is August 7th (my anniversay, no less - 6 years!) and I am already back to camo green wads. go figure.

I also had my consult for my port surgery (which really was sort of a waste of my time). My main concerns were placement and the fact that if my PICCS are not placed properly in my atrium (right?) I can ~feel~ them - this is hard to explain if you haven't felt a PICC from the inside, but it is a quite uncomfortable feeling. I've had to have them repositioned each time I've had them, so I didn't want to have to undergo port surgery twice if it wasn't place correctly the first time. But really, the doc was all like, "Ok, I'll leave it shallow, just remind me the day of the surgery." Okey doke doc.

He also told me to wear a tank top that day, a more "revealing" one to place the port in an area a little less conspicuous. I didn't have the balls to ask if he would make my incision in the shape of an S or a star or something, but I am going to, the day of the surgery. My step mom, who is also a surgeon, looked at me like I'd grown a third eye when I asked her if she would do that for a patient, so I am not holding out a lot of hope.

Also, the dude says he wants to use a general when I get it rather than twilight me. My step mom said that this doesn't mean a vent, but that I will have some doodad half way down my throat to hold my tongue in pace or some business. I am going to call the doc back and ask about all this. she thought maybe he was worried about my breathing during the surgery - but why a general would make this a BETTER option, I dunno. I want to reveal: hey, yo, doc, I am not a narc virgin, you can HOOK IT UP and I will be just fine. But I keep that bidnez to muhself.

Ok, then the other big thang in my life is disability.

I came to the conclusion that I cannot go back to teaching. at least not full time, and not children. My main reasons for this are:

1)I got sick a lot when I taught and my susceptibilities to abx are getting fewer and farer between and so I don't want to end up on IVS all the time and then having to juggle that with school and kids etc.

2) when I taught I didn't do treatments. I know there are plenty of people who can handle this, but I can't handle treatments, kids, housework and work work - something would give and we all know it would be a treatment.

3) I do qualify based on one of the three qualifications, so why the hell not try? The government says I am sick enough, so I thought I needed to get over it. with out the added stress of worrying about it all (money, esp)and trying to juggle odd jobs all the time (babysitting - not a health beacon job), I might be able to take even better care of my health.

But I did/do have some guilt as I know a lot of people a lot sicker who worked a lot longer under just as trying circumstances. and I have always prided myself on being a rather tough cookie, so some part of me thinks i am copping out or giving in.

and then, I had my first encounter with bias about it.

My son has a friend whose mother is trying to get disability. She was in an accident years ago and has a fused spine and some screws in her hips and stuff and so she is in a lot of pain daily. She has been waiting for a very long time for disability and is now working on getting a hearing.

I mentioned to her that I was hoping to get my case handled by the one of the advocacy groups available and told her about how things worked for CF patients as far as what was offered for help for us in getting disability.

She said, "you're so lucky. I'll trade you." uh huh. yeah. I have no doubt that her situation is miserable and there is no real "cure" for her pain; that it might seem unfair that I look relatively healthy and have groups available to help with my SSDI application - but it was a pretty insensitive thing to say. So I was like, "yeah, sure, any time you want a fatal lung disease with a life expectancy of 37.5, you let me know."

but then she went on about how she knew some people with CP who were "fine" and could work but didn't "just because they had cerebal palsy." holy fuck cat, come on. I realized a big thing.

If I go on disability I will probably have to tell people occasionally that I am disabled and therefore have to deal with this whole "you don't look sick" bologna, which I haven't gotten a lot of because I haven't been "sick" or aligned myself as a sick person. so I have to be prepared to reframe myself a little bit lest I get these kinds of comments. and that people will think I am milking the system or copping out or what have you.

I want to invite the non-Cf world to spend a day or three with me just to understand that I don't seem sick because I work hard not to. and even when I wasn't working hard to stay well, back before I was compliant, I was working doubley hard to hide my illness.

So today when I hacked up an olive from my lungs and panted up the basement stairs I wanted to call old girl up and say, "wanna trade now?"

6 comments:

Juliet Page said...

Hey Shannon - I hadn't thought about the stigma of disability either. Good point! BTW, I liked your blog post with the interview with your husband. He said some really sweet things. I think it's interesting how attuned they (husbands) get to our coughing. Hope things are go well for you! My Mom's always told me about difficult decisions (like for you the disability or not subject...) that when the time is right, it will be obvious and you won't be wrangling with it. {{{hugs}}} ~Juliet

Amy said...

As you know, I struggled for soooo long about going on disability. I still look and seem fairly healthy and I hate when people ask me what I do and I have to say I am disabled. Most of the time people just ask if I am going to get a job after moving to Boston and I just say I haven't decided. I am a wuss and I hate that look of "YOU'RE sick?!?!"

It's worth a shot Cyster. If you get approved awesome. You aren't milking the system. The system was made with qualifications and you meet at least one, so therefore the system is for you. :)

Stephanie aka PinkPigg said...

Love the last sentence. We may look healthy but were just great actors playing the part of being well. Good luck with SSDI.

environmental fiend said...

YAY you wrote! :)

I hear what you're saying about people asking. But really it is none of their damn business. You aren't obligated to tell them the truth unless you trust them and think they will understand.

It's funny (and I have thought about this for myself, too, not just you) that we can spend so many years "lying" to people about being ok, about having "asthma" etc. But when it comes to disability we are sometimes the strictest judges of ourselves. I guess what I'm saying is - don't worry about what other people think. :) Easier said than done, I know.

Good luck!

Kristin said...

I totally agree!

I'm considering disability myself. I work full time, and have for the past 6-7 years, but suddenly I'm having a much harder time and my pfts are dipping much lower.

I have worked SO hard to hide my CF at work from most people, and prove myself as a capable employee. I feel like if I were to go out on disability, everyone would say, what? WHY? Uhh... b/c I already lost more than half my lung function working! I want to keep the rest!! Lol...

For some reason it's hard to even get myself to accept I need it also. I feel like I shouldn't be going on disability until I physically CAN'T get to work. Ridiculous, I know. I'm working on getting over it, too!

Good luck, and keep us posted!

Kim said...

Yep, I totally hear ya, Shannon, on the disability bias thing. My responses to what I do for work differ depending upon who I'm talking to... If it's someone I feel comfortable with I'll let them know I'm disabled. Otherwise, I either make a joke of it and say I retired early, or that I'm between jobs etc etc etc. You can always say you are enjoying being a full time mom... it's true! Good for you to have made the decision, I know it's a difficult one. Hope you get approved soon!!! <3 Kim