msmith3033

Wow, that's crazy. So am I getting this right, even if something good happens, like a surprise party or something she can get put into shock?

WHEN I WAS FIRST TESTED FOR CUSHING'S IN MICHIGAN I WOULD HAVE PAID ANYTHING FOR ONE. THEY JUST DON'T GET HOW HARD IT IS TO PEE IN A CUP WHEN YOU HAVE SO MUCH EXTRA WEIGHT IN YOUR STOMACH, IT'S HARD TO GET AROUND A LARGE TUMMY. OUT HERE AT OHSU THEY GIVE YOU ONE WHEN THEY GIVE YOU YOUR JUGS. IN FACT RIGHT NOW I HAVE ONE OF THOSE AND A COUPLE EMPTY JUGS IN MY CLOSET WAITING TO BE USED. FUN TIMES!!

Earlier this week I went to the doctors again. And I can honestly say that I actually left the doctors office with a smile. I had to meet with both Dr. Fleseriu and then the surgeon. First I met with Dr. Fleseriu. She informed me that I have Full-Blown Cushing's. Whatever that means I'm not quite sure. She wouldn't give me a script for sleep because she doesn't want me to be on very many medications prior to surgery. She also told me that I will HATE her after surgery along with the rest of the staff. And that I might even REGRET even having the surgery afterwards. I guess because of the withdraws that I will experience from not having so much cortisol. But living with Cushing's isn't something that I can do. She also said that within a couple of weeks after surgery I'd start to lose weight and the swelling in my face will go down. Then I met with Dr. Delashaw's assistant. He was really nice and actually quite comical. He pretty much went over the risks, the surgery, blah, blah.... I had to sign some paper saying that I'm aware of the risks and that I give the OK for medical students to observe. Like I'm gonna care who watches the procedure, I'll be knocked out. Finally I met with the surgeon Dr. Delashaw. He seems like a nice guy. He even sorta sounds like a down-to-earth type of guy. I don't know what exactly I was expecting, maybe a serious old dude or something. But the first thing that he started to talk about was whether or not I was aware that Michigan lost to Oregon in football. I told him that I don't watch football anymore or really any sports for that matter. Then he just told me that they'd be going in through the left nostril to remove the tumor. My dad was tempted to keep the surgery date a secret for the rest of the day because the lady came in with a set of instructions and asked who to give them to and he stuck his hand out, so she gave them to him. And he wouldn't tell me when I was gonna have surgery but then gave in once we were in the parking garage. Dr. Fleseriu said that I HAVE to quit smoking. I really don't take orders very well but I HAVE to quit. Only because of the hormone replacement drugs and the fact that smoking alone increases your risk for stroke and heart attacks or something and having Cushing's alone puts me at a high risk for both. Which I already figured that I'd HAVE to quit before surgery but wow, it's gonna be difficult. I'm sort bummed since just last weekend I bought a carton and have like eight packs left. What a waste of money. If I'd known that I'd HAVE to quit smoking I would have just bought me a new hobby or something to do while I enjoy insomnia. My mom, grandma, Aaron, & my dad from Harrison are going to be leaving Michigan on the 6th of October to come out here. Which means that they will be here on or around the 8th. So we'll be able to spend some time together before surgery. And my mom said that they will be staying for the surgery and then a few days after I get out of the hospital but if the withdraws are really bad then she'll stay longer to help take care of me. I'm trying to stay positive about the whole idea of recovery and hopeing that it won't be too bad. Maybe I'll start to watch THE SECRET and SECRETIZE myself into a quick and painless recovery. Although Dr. Fleseriu did say that recovery is a long process. But I guess in the end it'll be worth it. Because eventually I'll be CUSHING'S-FREE. And I cannot wait for that day to come. I'm really looking forward to surgery but at the same time a little scared. But who wouldn't be? I mean it's BRAIN SURGERY. I mean for real I just got use to the whole idea of getting blood-work done and now I have to have BRAIN SURGERY. I don't know what I'm gonna do about college now. I think my first class starts on like the 5th of October. My advisor or whatever is suppose to call me on Monday morning so that I can tell him the surgery date and we can work out some sort of plan. Well that's enough for now I guess. Only 25 DAYS until GOOD-BYE CUSHING'S!!!

Well I'm very proud of myself. I went in and had the CSS Procedure done without being knocked out. I was originally scheduled for an IPSS Procedure but then on Thursday they called and said that they wanted to do the CSS Procedure instead. They didn't say why exactly the change but who cares, at least I'm getting somewhere. The procedure itself wasn't all that bad. All I really felt was when they put the numbing stuff in my leg (which burned just a little) and then I could feel them moving the catheter around up until they got past my hip bone (yes I do still have one of those). Then I really felt it when they started taking the samples from my pituitary gland. And that wasn't all that pleasant, it was a sharp, piercing headache. But through out the whole thing they had me pretty drugged up, so it was OK. I really felt the pain from it when they took me back to the recovery room. My legs were killing me at first, to where I was actually in tears. I of course tried to hold it in because I didn't wanna cry in front of my dad. Which seems to be the normal thing now-a-days. I hold in the tears a lot from the pain that I go through because I don't want anyone to think that I'm a baby or something. But anyhow they gave me an Oxy for the pain. Nobody here has actually seen the extent of the amount of pain that I go through some days because I don't tell them and I won't cry out in front of them. I'm just taking it like a champ. But deep down I'm terrified of this whole disease and the treatment. Also last Thursday OHSU called me with my new appointments, on Friday, September 7th I meet with Dr. Deshaw or something for surgery and then after that I meet with Dr. Flesurie to go over all of my test results or something. I'm so scared but I'm not gonna show anyone because I have to be strong through this. I'm still going through the messed up sleeping patterns. Which really gets annoying after awhile. I just get so bored being up all night long and then sleeping most of the day, if I'm lucky. But last night/this morning wasn't so bad, I didn't really spend all that much time alone. Once I woke up we ate dinner and then I took a shower and watched a movie with Barb on LifeTime while I studied algebra. Then I called Grandpa Smith to do my weekly check-in and then I came back in here at about 9:30pm and was watching TV and checking my Email when Shawn came in to get me to go in their room room to watch a movie. Shawn, Marissa, & I watched 'Meet the Robinsons' and that got done at around 12:30am/1:00am. So then I went outside for about an hour or so and watched my dad sand/stain the deck but got bored and came back in. Then I went in the living room and was watching the 'Flintstones' with Marissa when Shawn came out and said that I need to watch some movie with my dad. So then I went in their room and lied down and watched 'The Pirate Movie.' So it wasn't all that bad this time. The only thing that is really irritating me about the whole messed up sleeping thing is that now when the insomnia like things start happening every night I get this really gross taste in my mouth that is pretty much impossible to get rid of. Nothing seems to work. But I have some strong gum which seems to help a little bit. I should be falling asleep relatively soon, I hope. It's almost 8:00am here and I think this is close to the time that I sometimes am able to fall asleep. Yesterday I don't think I feel asleep until around 12:30pm but thats only because AIU gave me a new adviser or whatever that has no idea of what I'm going through and kept calling me to go over stuff that I already had done. But whatever I guess. Well that's enough for one journal entry.

Once again I'm a victim of insomnia. Damn it I was really liking sleeping like NORMAL people. You know going to bed one day and waking up the next, but now I'm going to bed one day and waking up the same day. And that's only if I'm able to sleep at all because when this happens I only sleep a little bit and not very restful either. Since I've been keeping track of my sleeping patterns I've noticed that everyday it's getting later and later before I'm able to fall asleep and the amount of time I spend sleeping is decreasing. Yesterday I woke up at 2:30 in the afternoon and didn't go back to sleep until 10:30 this morning and that was after I was forced to take four Tylenol PMs in hopes to fall asleep. Then at around 1:30 this afternoon my dad came in and woke me up to feed me. He's really being super supportive of this. It was nice to have someone actually go out of their way to make me a plate of food and deliver it to me in bed without being asked. Luckily once I was finished eating I was able to fall back to sleep relatively quickly by 2:30pm. And was able to sleep until about 4:30. So today I'm going on only 5 hours of sleep. I was once again forced to accept the physical problems associated with this illness. First while taking a shower I noticed that the stretch marks on my upper left arm are gradually getting closer to my elbow. And while rinsing my hair I accidentally pulled out two handfuls of hair. I'm really surprised that I even have any hair anymore. I don't even use adult shampoo anymore. I've been using that kids suave 2-in-1 shampoo. Mostly because I like to use conditioner and since it's 2-in-1 I only have to rinse my hair once, so then I won't lose so much hair. I also made the horrible mistake of looking in the mirror while I was undressed. It's so embarrassing and disgusting to look at myself now-a-days. On Monday I have an appointment with an internal medicine doctor to get some medications to help deal with the pain management. One thing I'm definitely going to ask for is Ambien for sleeping. I'm still waiting on the results from OHSU. I emailed them earlier so hopefully they will respond soon because I'm really curious to knowing what my results are from my tests and stuff like that. I already know that they found a 2.5mm tumor on my pituitary gland but I don't know what the results are from all of my other tests that I took.

Yesterday was probably the worse Cushing's day I've ever experienced so far. It all started out with sleeping a lot. I pretty much spent the entire day asleep. Once I finally woke up I woke up with a terrible headache (scale 1 to 10 - probably a 9). And my entire body was so sore, I was literally unable to get out of bed. I tried unrepeatable to watch a movie but feel asleep each time. It was just a horrible day in general. It was so bad that my dad even brought me home dinner and brought it in my room for me because I was just unable to move about like usual. I'm not sure why I felt so bad today but it just wasn't fun at all. The muscle soreness and I guess overall soreness was so bad to where I wasn't even able to sit down for an entire cigarette with out feeling pain from sitting up. I didn't even spend that much time on this thing which is very unusual since this is where I spend the majority of my time. I didn't even have the energy to talk on the phone with my mom, which is yet another unusual thing since usually I spend on average a good four to five hours on the phone with her a day. I really need to take a shower but I'm still a little sore and it hurts to just raise my arms for the most part, it's amazing that I'm even able to type (which I'm doing so very slowly). I hate it when I know I want to take a shower but I just don't have any energy to do so. I'm hoping that tomorrow will go better because I truly hate getting stuck in bed all day long. It just doesn't work out for me. My concentration is also really low for some reason. I keep trying to watch Deju Vu or whatever with Denzel Washington but I just can't seem to grasp the concept of the movie at all. It seems to confuse me more and more each time I watch it. Maybe tomorrow I'll be able to sit and watch it and hopefully comprehend the movie in general.

I know that apart of this terrible disease is depression and I've learned to deal with that for the most part. But what am I suppose to do when I feel so secluded from everyone? In the beginning I was pretty much secluded from my friends and people that wanted to be around me but now I'm just secluded by everyone in general. In the beginning I was secluding myself by choice, well not exactly by choice but I had the opportunity to join in conversation and stuff like that with other human beings. And now that I've moved to my dads it's like I'm in an almost complete seclusion from everyone. And not necessarily by choice either. All I do is spend all of my time in my room and let me tell you TV, movies, and this damn internet get boring after awhile. I'm not even invited to go anywhere to do anything anymore, I just sit here and pretty much co-exist. Shawn is always on the go when she doesn't have to work but never invites me to go with her to like the store or anything anymore. I mean tonight I was sitting at the dinning-room table and her and Marissa went to the store, she didn't even bother to ask if I'd like to go along with them. Marissa didn't even want to go, she would have much rather preferred to stay home but was forced to go anyhow. While here I am willing to go anywhere. I just don't know what to do anymore....I guess I just have to deal with this along with the many other things that I have to deal with at the moment. Eventually, I will be NORMAL again. And live a NORMAL life.

Well yesterday was my first trip to OHSU to meet with Dr. Maria Fiseriu. I really like her she is very nice and seems to know what she is doing. Anyhow, she said that all signs point to Cushing's but because it is such a rare and nasty disease she wants to re-run some tests on me. Yesterday, all she done was talked to me and done a physical like examination of what this terrible disease has done to me. And she had some lab work done. Last-night I had to take a pill at 11 and then had to go back up to OHSU this morning at 8 to have some more blood drawn. I should have had them take the blood from my left arm because now my right arm where they take blood from is sore. Later this week I have to do two 24-hr cortisol free urine tests (ewwww..) and then a couple of saliva tests and then turn them back in. The urine tests I have to take back up to the lab but the saliva tests I have to mail in once I do them. She was also talking about having to do that procedure where they go up from my thigh to my pituitary gland. But she assured me that I'll be asleep during the procedure, so I'm not all that worried about it. Besides I'm willing to do anything to get rid of this terrible illness and to get my life back. I'm applying for college online. I'll know tomorrow whether I'll be able to start this month but if I won't be able to this month I will end up starting in October. I'd much rather do college at a campus (like normal people) but it's something I can't really do right now. So online it is. Now, I'm sleeping a lot again. I'm not really getting good sleep but I'm just really restless now and spend most of my time lying in bed. This really shouldn't be happening to me, I'm only 18 I should be up running around or something not having to lie in bed all day because of the aches and pains. Sometimes I just wanna cry but I know crying isn't gonna do me any good. So there really isn't much point in doing so. I keep hoping that I'll just wake up one of these days and all of this is just a really bad dream or something but I doubt that'll happen. I'm really hoping that my levels are still really high so I won't have to spend a lot of time testing again. I mean I'm already diagnosed in Michigan now I just have to be diagnosed in Oregon. But I'm not really worried about that either. It's a good thing I have more patience than my dad. His patience is running really low with the doctors and the pharmacy and stuff like that. The doctor wouldn't give me a script for anything to deal with my terrible constant migraine that I seem to get a lot but I think that's mostly because she doesn't want anything to effect my testing. I told my dad that it would be OK but he isn't willing to accept that. And it's not like I can keep them a secret because if I do, I get in trouble. So I'm just hoping for the best and that they won't get like they were before.

Insomnia gets so boring. I keep running out of things to do, especially during the night. I don't want to wake everyone up by moving around the house too much so I pretty much stay in my room. All I do is color, read these posts, IM a couple of my friends, play games on here, etc... I really never thought that the internet would get to be so boring but it's all I really have to keep me occupied other than of course coloring. I'm starting to get tired of watching movies all night every night. This is just getting to be old really quick. I think my main problem is, is that I'm so tired of being sick all the time. It just isn't no fun being sick 24 hours a day, 7 days a week. And I'm beginning to think that I actually feel a little better with less sleep. Because when I was sleeping all the time it would take me hours to be able to function at a semi-normal pace but now when I finally fall asleep I'm only able to sleep about 3 to 4 hours, 5 if I'm lucky. And when I wake up it doesn't take me nearly as long to start to be able to function at a semi-normal level. Nine more days and then I get to go and see Dr. Maria Fiseriu at OHSU. Hopefully, she'll be able to prescribe me something to help me so that I sleep at night. I miss being able to lie down in the dark and wake back up in the daylight. Right now its the opposite I wake up (if I end up falling asleep at some point) when it is dark outside and I end up going to bed (if I'm lucky) during the daylight. I can't even keep track of the word day anymore. This is just ridiculous. Can't wait for it to be over.

Well today OHSU is suppose to call me to make the arrangements for me to start seeing them. I'm so excited after all of this time I'm actually getting somewhere with this whole disease. I hope they call before I fall asleep because once I'm asleep, I'm asleep. Insomnia still isn't very much fun though. But I think I've learned to accept it. Now it's just sort of coming natural to me staying up all night long and then going to bed during the day. I'd still rather it be the other way around, but I'd rather not be sick too. I've gotten nine fuzzy posters done already and am almost finished with my tenth. They look great and I'll always have them as my memories of this disease. I just never thought I'd spend my time as an 18 year old coloring fuzzy posters and giant Disney Princess pictures. But then again I never in a million years thought I'd get a disease this rare. Sometimes I think I'd rather just accept that fact of obesity rather than it be something so serious.