I'm going to explain a few things, some of you may or may not know much about this part of my life, but it sort of IS my life, now, so I'll explain the best I can, with what little patience I have at the moment. It might be a little long- winded, because as much as I'd like to explain everything, there's just no way that I could, well not in any way that any one else would be interested. I'm writing this mostly because I want to remember things, myself, and I don't know how to write about it without sounding like a huge, whiny, cry baby, but whatever.
In the summer of 08', I started having terrible migraines. I let them go for a long time, because no one seemed to have any answers. In November 2008, I was still having the migraines about once or twice a month.
They usually lasted for about 4 days. The longest one- 6 days. I went to
the ER. Saint Vincents. They gave me a cat scan, gave me fluids (since I
was SO dehydrated) and meds to take the pain away. Told me that this
was menstrual migraines.
In December 2008: My period stopped. In March of 09' I remember the day- my mom came over to my house with my sister. We were in the backyard playing catch with N, and my vision was double. Just like that.
In May 2009, I was still having the migraines, my skin was dry
in odd places, my face was broken out (which was really never an issue
for me) I was thirsty all the time, my hair was getting unhealthy,
In June 2009, I had another migraine. My vision was getting worse. I was
seeing double, blurred and colors! Literally, I could look at a white
wall, and see cartoon characters doing things! (they said later,
that this was because of the tumor leaking, and that things like that
really do happen...tricky brain.) I went to the bathroom to get a drink
one time and practically blacked out.
June 13, 2009: I called my family doctor, told the receptionist my
symptoms, and she had me go to the ER. (Hamot) My parents dropped me
off around noon or so. I literally waited for about 6 hours before
anyone would see me. My mom came back right after I got into a room. A
nurse was asking me about everything, I remember telling her about the
"cartoon characters" that I was seeing, and the "trippy colors, and
shapes" that I was seeing. I really thought she was going to think I was
a junkie.
They told me that I might have to get a spinal tap.
Apparently, excess fluid in your spine can cause these kinds of
migraines, and getting a spinal tap would find out the problem WHILE
fixing the problem. I was actually very nervous about this. I could
imagine the pain was bad. I got an MRI.
They ended up checking me into the hospital, I was surprised. I really
shouldn't have been, with everything going on with me, but at the time,
all of these things didn't seem real. The next
morning, a team of doctors woke me up. They told me "I have good news
and bad news, good news- you won't have to get the spinal tap. Bad news
is that you have a pituitary tumor. It's rarely ever cancer...." and I
basically drift off then. My thinking was "thank god I don't
have to go through the spinal tap..." It was a tumor, and supposedly it was "leaking" or "bleeding," not sure which, I've heard both from doctors. (This left me with permanent blind spots in each eye.)
I remember calling my mom. I don't even know where she was. Work, maybe.
I told her. I don't remember how she reacted. A lot of things are a
blur after that.
I do know, that I didn't realize how serious this all was. Except when my parents would leave, when they left, I got really upset. And when N left, I was a horrible, horrible wreck.
June 16,2009: The day of my surgery.
Basically what they did was
go through my left nostril, cut out a piece of bone from my skull, and
get in there and remove the tumor. Unfortunately most of my pituitary gland went
right along with it.
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| Zip Tie nose. Most of it is all healed, by this point. This is from my second surgery |
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It was hard for me to walk after surgery. I had physical therapy. They
would have me do silly things. And they were difficult. My vision was
still bad, so that was part of it, but the surgery did have a great
effect on me. I was stuttering, losing track of my sentences right in
the middle of them, couldn't walk right... This went on for some time
after my surgery as well.
I cried once after my
surgery in the hospital. I was doing physical therapy and I just could
not walk right. I broke down. It suddenly hit me. Everything. I had a
brain tumor, I had it removed, I have no pituitary gland and am on all
these medications. I can't talk right, I can't think straight, I can't
fucking WALK right. The moment passed.
My life changed pretty drastically, afterwards. I was at ACL at least 3 or 4 times a week for blood work. I was diagnosed with a few different things- since the Pituitary Gland controls so many different hormones, etc in your body, mine is kind of a train wreck! Thank god for modern medicine. I am on hormone replacements, now, for the rest of my life. I'm fine with this, except for the steroids.
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| Blood work makes me look like a junkie |
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| This is the start of bruising from lab work |
Panhypopituitary is the word that just about covers it, I suppose.
I was diagnosed with Hypothyroidism, Diabetes Insipidus, and Adrenal Insufficiency.
For those, I take Synthroid, (or Levothyroxine) DDAVP (Dessmopressin) and Hydrocortisone.
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| Synthroid, Hydrocortisone, DDAVP This is what my table looks like on any given day. |
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Finally, last summer, about a ,month after my dad passed away, I was noticing different things. Earlier in the year, I had experienced migraines, again. But, after my dad died, no one was feeling great, so I chalked up everything to that. I was not able to keep anything down. I was losing weight, rapidly, (wasn't complaining about that!) Then, I started hearing voices. Literally. Finally, I went to the ER, and was diagnosed with Diabetes.
Let me clear something up- I was already diagnosed with Diabetes Insipidus, which is "water diabetes." Basically, Salt problems, instead of Sugar. So, the symptoms mirror each other, but medically, the two are different.
My sugar was up over 600, and I was in the ICU for a few days. Then, I got an MRI.
The next day, doctors came in and told me that my pituitary tumor had returned. It turned out to be an infection, not a tumor.
I ended up having another surgery a few weeks later. In the Dr's words, he "scooped out the whole area, pituitary, and all." So, the surgery was the same as the first, only this time, the recovery was much easier. I felt good, afterwards, for the most part.
So, I was diagnosed with Type 1 Diabetes, because my body does not produce hormones on its own.
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| Diabetes kit |
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Afterwards, I had a pic-line for antibiotics for 2 months. Home Health Care came to my house twice a week for blood word, and to change the dressing on my line. Luckily, I was always able to take care of other things, on my own.
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| Antibiotics | |
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| Pic Line |
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Most days, I am just tired. I've literally gained over 100 lbs. from all of it, and the steroids. Cushings, are the symptoms that I have, if you're very interested. Thankfully, last week, after 3 years, my steroid dose was cut in half!! So, I will be losing weight, thank goodness. Steroids are a BITCH. Fibromyalgia is also a problem. I believe it's a side effect from everything or something, but I doubt we'll ever know the exact start of it. My skin hurts sometimes. My whole body hurts most days.
I complain a lot. I feel guilty a LOT. I have a small child that has had to deal with all of this, without totally understanding any of it, or why I feel terrible on any given day. My family is amazing, and help me in many ways, I can't even describe. They listen to me bitch and moan, which is huge, because I know that it must be very annoying at times. It's funny when someone says something about me being "strong." Of course, when you go through things that are tough, it's not like you have any other options. And I'm about as weak as they come, like I said. I have decent days, but if I don't push myself, I struggle to get to class, etc. I hurt a lot. It's amazing what these hormones control. Sometimes my joints hurt, my muscles are so weak, I can barely lift my son at ALL. My skin hurts sometimes, which I still find very disturbing, and I don't understand it. My brain my brain, my brain. Diabetes has sufficiently fried it! I just called my mother today, after talking to her on the phone, and told her that I forget what we talked about, and I'm not sure what I'm doing right now. I just needed to check my sugar, and give myself insulin. Things like that happen sometimes. It's silly. Silly is the best word, in my opinion, to describe this situation.
I guess I felt the need to explain these things, because I always want to see people, or hang out with people, and most times, I can't, or won't. Can't, if I don't feel well, and won't, because it's difficult to literally not be recognized by someone that you used to be friends with, simply because you've gained a TON of weight. I hate seeing people, but I want to so badly. I always feel the need to apologize for looking so terrible, to people that I haven't seen in a while. It's such a joke. And there's no way that they could understand.
I am lucky to have awesome friends who I've met online, who have the same illnesses as me, and we talk about things, complain about things, and compare things. I have a family who laughs at me, which is exactly what I need! We are funny, and sarcastic, and they make fun of me, while I make fun of myself.
Humor really is what gets me through situations, and I couldn't have a more sarcastic family<3
So, some days, when I'm feeling sorry for myself, and posting sad-sacky things on facebook, feel free to tell me to shut the hell up, because it could be worse! Everyone needs those reminders, sometimes, because it's absolutely true!
