Wednesday October 18, 2006

This is a brief and rare party I’m throwing for myself. I’m pretty good at not getting down about all the problems I deal with in life but right now I feel really frustrated. If you want to be encouraged, don’t read this. If you want to know the real me, then read on.

Being a medical phenomenon sucks big time.

None of the problems bother me individually and really, the whole picture is just something I choose to accept with grace. But having a day like today shows me just how much blind trust I’m required to have and just how scary my life can be sometimes.

You start out with the Spina Bifida. My generation is really the first group with a good life expectancy for those with as many SB-related issues as I have. Those who are older have fewer problems than I do. This creates a problems for doctors because they either haven’t heard much about SB at all (the specialists) or their knowledge is of kids. They don’t know what to do with an adult at all. The issues with hydrocephelus and my shunt seem to add more onto the dilemma.

Then you had the weight. No one seems to know what to do with a morbidly obese person except blame all their health problems on it and tell them to lose weight.

Then you add the diabetes. This is actually common and doesn’t cause problems, it just adds onto my list of things “wrong” with me. This is actually more complicated now that my diabetes is in full remission. How I managed to practically cure an incurable disease is confusing LOL.

I also have obstructive sleep apnea and while it is improving with my weight loss, I’ve been told it will never fully go away without another surgery that I can’t even have yet because of other health issues. So that means I’ll wear a darth vader mask for the rest of my life. Who wants to marry that?

Then you add the Graves Disease. Many doctors don’t even know what it is. Hell, I had never heard of it until it hit me. This has been the most difficult thing I’ve had to deal with. My thyroid has been killed with radioactive iodine and this causes all kinds of weird problems.

Then you add the female problems. Not to embarrass my male readers, but my femaleness (is that a word) has been fubar since I started puberty at age 8. At first I was told it would all get better as I got older. Then I got older and it didn’t get better but I did get fat. So I was told the problem is from being fat and it would be fixed as I lost weight. Well I’ve lost 130 pounds and the problems are not better and sometimes almost feel worse. I’ve had all kinds of tests including having my damn uterine lining sucked up through a straw or having my cervix freeze dried then clipped. I was not amused.

Then you add the feet problems. Those I actually never worry about. I’ve been told it can’t be fixed even though I want it to. Oh well. Shit happens. So does fungus.

Then you add the crap with my lung. I have an unexplained, weirdo nodule in my lung. It developed in the three months after my gastric bypass. I’ve had a cancer test that came back clear thank God but now I have a CT scan every six months to make sure nothing has changed.

Now I’m having trouble with my hip and it’s both painful and scary. Ugh, I don’t even want to go there.

Then you add the fact that I’ve had gastric bypass and this is hard for many doctors to understand. It’s caused so many great and wonderful things in my life, INCLUDING the weight loss. But it has also caused some weird vitamin deficiencies that make me feel like crap.

I think that’s a pretty complete list. If there is something else, I don’t want to think about it right now. My point isn’t to complain. It’s just so frustrating to see a doctor who gets glassy eyed when I give them my medical history. I hate it when I get passed off onto other doctors and I have to see a specialist for each problem because of the severity of the problem. I have different doctors following different problems and they are all starting to overlap. I’m also starting to get tired of filling out all those damn medical history forms that only give three lines for listing surgeries (I’ve had 15) and only a handful of lines for medications and I take like 8 or something. I’m tired of having to give the same list of information on the damn form then tell the nurse the exact same information only to repeat it for the doctor.

I’m truly tired of all of this. I’m tired of being a patient that has “cool” problems. I don’t want to be poked, prodded or probed any more.

Some days like today I just want to be normal.

By the time I wake up tommorrow I’ll probably be over it.

3 comments / Add your comment below

  1. Just cruising through and thought I’d say Hi.  You’ve got such an upbeat demenor, despite all that’s going on.  I hear ya on all the medical stuff — there’s got to be a better way to transfer all the information without repeating vertabium.  My oldest doesn’t have a file, he has a book that gets transfered with the doctors and specialists. 

    Hope things look up soon. 

  2. Hey buddy. I wont say I understand fully because I couldn’t possibly, but I do understand a little.I agree it sucks and it helps sometimes just to vent and let it out. I had all kinds of problems for years that they couldn’t figure out then finally diagnosed me with Fibromyalgia then I took like 8 different meds 3 times a day for years. Thank God I don’t have to do that anymore. I hope you have a better day today and I pray that you finally find a Doctor with atleast a clue! Seriously I hope you are able to get this all figured out I can only imagine.Love ya! Janice

  3. Miss Jamie,

    You are allowed an occasional pity party – but only because you are normally strong and upbeat. 

    I’ll pray for strength and comfort for you.

    Erin

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