Manly Bits

August 20, 2010

So the hormone replacement therapy is working. Without going into the awkward details let it suffice to say that I’m going through a second; and highly accelerated puberty. While something like 85% of my readership is female (30% of it being my mom) and therefore wont be able to identify with this, I can honestly say that the worst thing about all this is that I forgot how distracting functioning male genitalia is. Not in the “oh look a new toy I wanna play with it” sense, but in more of a “I notice girly bits again” sense. It’s hard to get things done.

Should be getting the results of the growth hormone testing today, lets hope for the best. I’m definitely all for something that makes me feel like I can fly and shoot rainbow lasers out my eyes, but I’d rather not have to worry about finding the $500-$750 a month.

Hormone Therapy

Speaking of money, I had my re-evaluation call with the firm that’s representing me in my disability application. It felt somewhat awkward as they went down the list of symptoms on my previous application and most of the time I responded “That only happens every once and awhile and it isn’t an issue.” Which is a good thing I suppose. My case worker said that she thought I probably would get approved, but that it wouldn’t be until the third or fourth appeal.

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Well this post isn’t going to go exactly as I wanted. What I wanted to do was link the scene from Kindergarten Cop where Arnie… you know what? Screw it.

Now promptly disregard the theme of that message. I do have a tumor. It is a very small and 99% likely to be benign, but a tumor none-the-less. The tumor is about 2mm and is on my pituitary gland, it is excreting prolactin which is what screwing up my testosterone. It is not what caused my hydrocephalus.

Today I got manly-juice injected into my butt.

In other words I am now getting bi-weekly testosterone injections and am taking Cabergoline to reduce the levels of prolactin in my system. I may eventually stop getting the testosterone if my system figures out that its supposed to be making it on its own. But I should expect to take the pills for a long period of time.

I am also going to be tested to see if I need to have growth hormone injections as well. Normally we would wait a few months to see how I feel with the testosterone injections, but seeing as I may be losing my health insurance and the test is around $1000 I’ve decided to get it out-of-the-way.

If I do require the growth hormone it will result in me taking a daily injection. I’m hoping I don’t need this, as it is very very expensive. The injections cost anywhere from $500-$750 dollars a month. That and I hate needles. A lot.

All in all, none of this is really a surprise. And it could have been a lot worse.

Positively Positive

August 1, 2010

I received some test results in the mail today, seems that I don’t have mono. This is a good thing, I don’t think i could handle one more thing that’s primary goal is to make me feel tired and ultra-poopy.  Wheather this means I have strep or a staph infection or something else remains to be seen. Maybe it was just some kind of cold or mild flu bug, wouldn’t tat be cool?

This whole “You don’t have another terrible sickness” thing has got me feeling all sun-shiney and hopeful, so I’ve decided to try and put a positive spin on the whole “You may have a brain tumor.” (Holy crap, way too many quotation marks in that sentence.)

So without further ado,  in no particular order here is a list  of a few good things about potentially having a tumor/cancer:

I won’t have to worry about global warming.

I won’t feel compelled to recycle. (You may be saying, “But its for the children!” Sorry, at this moment I am unable to have any so I’m playing the selfish card.)

I’ll have something to say to the old-ladies who give me dirty looks when I park in a handicapped space.

If I ever visit a theme park I’ll get to go in the short lines.

I wont have to stress that apparently everything is carcinogenic.

Best of all?

Not having to deal with stupid people anymore.

:|

July 28, 2010

Doctors appointments all day yesterday and one today. Woo.

I saw the rheumatologist, he says that I have a “Connective tissue auto-immune disease”, when I asked what this meant he said “Its like Lupus, but not as bad”. He’s ordered more tests and I have future apps, as is par for the course.

The endocrinology visit was a bit more eventful, Dr.Goldstein didn’t start treatment as he wants to know more about what is causing the issues I’m having. He said he thinks I have a tumor on my pituitary gland, so I have another round of MRI’s to do. He said because my prolactin levels were so high last year when I first saw him he was concerned, so we did more lab work to see where they were at.

Basicly there are two courses of action to be taken. If the Prolactin levels are still high it means that my hippocampus isn’t talking to my pituitary gland,which means my pituitary gland isn’t telling my manly bits to do their job. I will have to take a pill every day and have testosterone shots. He said sometimes with this pill people get better and don’t have to get treatments anymore, but that I should expect to have to take it for several years at least.

The other option is that my prolactin levels have come down, which means I will just have to have the hormone replacement therapy, which means just the shots, but definitely for the rest of my life. We talked about different treatment options and the shots seem to be the best course, they are far cheaper than the patches. And while I have no fondness of needles and the thought of 27 shots a year makes me squeamish with the potential loss of health insurance money matters more than ever.

As far as the whole “He thinks I have a brain tumor” thing goes, I’m honestly not surprised or worried. This would explain why I have hydrocephalus and all my other varying problems. And as terrible as it sounds, with something like a brain tumor I can go to SSD and be all “This isn’t going away. Pay me!”

Ducks in a row.

May 6, 2010

Well my time here in Nebraska is drawing to a close. I’m picking up Des at the airport the day after tomorrow and I’m starting to get ready to return home.

Read the rest of this entry »

wewt

April 21, 2010

So I got a letter from Oregon… It was from the disability department. I now have Oregon Health Plan Plus! This now means that I don’t have to get referrals to go see the doctor and can go whenever I need to! This is great news and I’m really excited. The only catch is that to stay on the program i have to qualify for disability, so if I don’t get that I’m double screwed, one because I can’t work and will be flat broke, and two because since I have OHP I have to drop VIM, so if OHP gets taken away I’ll be up a creek with no paddle.

Oh well, this is still really exciting.

Shazbot

April 2, 2010

Well crap.

My double vision hasn’t gone away and I’ve started to feel shunty. I called Dr.Hadden’s office and they recommend that I see a neurosurgeon here in Nebraska.

This presents a problem in that I’m still entirely uninsured and VIM won’t cover me here. I called Dr.Poocioni, the neurosurgeon who took care of my little brother’s spinal surgeries. He is having me make an appointment with his office next week as well as an appointment with an optometrist. My Mom has repeatedly said that she will cover the bills and that it’s her job as a mom, blah blah blah. While this may be true, it doesn’t prevent crippling guilt over the fact that these appointments alone will probably cost around $2000.

Not exactly...

VIM

January 15, 2010

Today I got re-screened at VIM, the local free clinic. These guys are great, I can say with no exaggeration that they saved my life. I am completely uninsured and without these folks I wouldn’t have been able to see a doctor, much less get my MRIs or surgeries. They have completely footed the bill for all my medical care thus far.

They run completely off donations and volunteers.

The rescreening process is just them checking to make sure I haven’t won the lottery or become a fortune 500 CEO over the past six months. It’s relativly painless, you just bring in a current bank statement and the past few pay stubs from work. Usually takes less than 20 minutes.