Friday, April 08, 2011
Anyone who hasn't read several weeks worth of my blogs will have no idea what's going on.
For my sparkfriends, this is not good news. Be warned.
I've felt horrible all day. Started thinking about going to the ER tonight, but considering too many doctors are severely prejudiced and one look at me they say there's nothing wrong, or one look at my records and they throw pills at me and refuse me any other treatment. So I called my endocrinologist's office to ask if they can give me any test results so I can tell the ER doctors... they didn't call back. 3 hours later I called and they put my doctor on the phone. He gave me 2 diagnosis (#8 & #9 since Feb 2010) though he still doesn't know WHY it is going so wrong... but there are most likely more diagnoses coming. He said my blood tests were pretty much all very off, and he will be giving me all the diagnoses and several medications on the 18th, but in the meantime, he's putting me on an incredible dose of vitamin D (in December, my vit D was normal, now it is severely low) and is going to get me set up to get an abdominal CT scan to look for tumors on my pancreas and/or other organs. He also told me to eat 6-7 small meals a day... just one problem - I already do beyond that. I pretty much eat little things every 1-2 hours during the day - as much as I possibly can. It isn't helping. So I'm ready to give up on food completely. Pretty much I need to be on a low fat, low fiber, low carb, and moderate protein diet. What can I eat then?!?! My body obviously can't handle food, so I would rather spend the next 10 days not eating than have my body freak out every couple hours. Heck, I spent most of August and September last year barely eating or not eating at all. Not eating will do less damage than what is happening right now. (Don't argue with me unless you're willing to read several hours of explanations about everything that has happened to me in my life that proves this.)
Hankenstein has pointed out several times about how people here tend to tell things they wouldn't normally, since there is an anonymity. So I'm going to go along with this - feel free to stop reading here if you wish. Warning: what follows is a very very difficult read for anyone and everyone.
As I'm sure you can figure out, I hold out little hope of my health turning around with these new diagnoses. The problem with this is that I can't die. (Again - don't even argue - you have no idea.) I should have died over a dozen times in my life... not a 'near miss', but most people, if they had gone through it, would have easily died. I've attempted, several others have attempted (without my consent), several forms were attempted, but I always came back. Once I was choked until I had stopped breathing for several minutes and my heart stopped for at least a minute (I lost the ability to count the seconds around 30) and without any attempts to revive me, and with me fighting to NOT breathe, I still couldn't die.
The irony here is I haven't wanted to live nor had real hope for my life since I was about 8 - that's over 20 years of wishing I could just die. But when I realized I couldn't die I also realized there was no point in trying. So now I wonder, as my body malfunctions and shuts down, will this finally kill me? Or will I be forced to continue the daily torture that has been happening from myself and so many others around me for most of my life?
BTW, if you think that is depressing and sad, it is only a tiny piece of what haunts my every waking moment. My therapist is completely out of ways to help me, as she's completely overwhelmed and seems to have problems even hearing what's happened to me at this point. She didn't believe me when I told her I was a tough case... she gets it now. She now understands why pretty much everyone in my life gives up on me.
Lastly: please don't say that I haven't died because I must have a reason to be here, something I need to do. I think that is the most ridiculous idea ever, because how often do you hear about how 'the good die young' or 'it is such a shame to lose him/her'? Then how often do you hear 's/he got what s/he deserved' or 'the world is better off without him/her'? People will not mourn me when I'm gone. I've known for years that I do not want a funeral or a wake because the handfull of people who might come would be patronizing me by pretending they will miss me, when they haven't cared for years. I'd rather be ignored and/or used (for research) in death the way I've always been in life. Of course, whatever is out there that chooses who lives and who dies first needs to be persuaded.
Tuesday, April 05, 2011
Got a phone call from my endocrinologist's office today. They cancelled my appointment on the 11th and moved it to the 18th. I was already worried, now I'm freaking out. I'm scared to eat. I'm scared to move. I'm just scared. Now I have to wait a 2nd week to get my results and/or any recommendations about what I can do to deal with everything my body is going through. I asked that if there is anything he can tell me before the appointment to please ask him to call me because I'm just freaking out.
So in the meantime, I'm realizing when I eat is when I feel like horrible. So I'm cutting back on eating. This may mean I will start losing weight again, but I guess I'll deal with that if it means I can have a little less pain through the day.
Tuesday, April 05, 2011
While it was a good thing to have someone with me during my hellish test on Saturday, as I expected, Sunday brought a HUGE fight with my mother. It was over an hour of fighting, then an hour of me just saying some things I wanted to say, then an hour of her crying and defending herself then getting pissed at her life, then finally an hour and a half of finally getting to talk. All in all, it was good that she finally shut up for once and actually listened... BUT did this really need to happen NOW?!?! She went home today - so now I've gotta get back to my routine.
I found out I won't get any test results until I see my endocrinologist in a week (11th). Which means I have a week of fighting myself to not dwell over this or try to figure it out on my own - this is going to suck. In the meantime, I just feel terrible. From when I finish breakfast in the morning until when I go to sleep, I have a headache, my entire abdomen and back hurt, and I can't concentrate or think straight. My work is definitely suffering, but I can't just not work while they figure this out. That would mean giving up my job. So I fight my body all day at work and when I get home I just want to collapse - and I often do just lay on the couch and fall asleep or at least doze.
Time for me to head to bed and see what tomorrow brings.
Sunday, April 03, 2011
I'll be honest, I'm scared. I had my glucose tolerance test today and it was just bad all around. I'll try to give a rough rundown of what happened. (FYI: glucose levels should be between 65-99 to be a normal range.)
I was taken in back to have my blood drawn (5 or 6 tubes) and was going to be given the glucose before going back out to the waiting room to sit for an hour. Unfortunately, that didn't happen. As she finished drawing my blood, I collapsed to the floor. My brain was just shutting down and my hands went into a seizure-type rigid state and I couldn't even move them - that lasted for probably 5 minutes. They wanted to cancel the test - NO WAY! I need this figured out! They tested my glucose and it was 75. They took me to a room with an exam table so I could lay down. After a few minutes they gave the the glucose drink and then I sat up in a chair to play sudoku (use my brain). I felt the symptoms coming at a little over 30 minutes, and ended up being put back on the exam table to lay back down. At an hour she drew my blood again (2 tubes) and my glucose was 236. Shortly after I went into seizure-like shakes - though I was awake and alert and telling everyone I don't need to be comforted because this is my body (over) reacting, and I'm not freaking out. I pretty much spent the rest of the time laying on the exam table. At an hour and a half I started feeling better, but at 2 hours my glucose was still 236 (3 more tubes of blood drawn). During those first 2 hours I was all over the board from seriously freezing cold to hot, a little hyperactive and talking a LOT to so out of it I could barely talk, shaking uncontrollably to unable to move. At the last blood draw (2 tubes) my glucose was 203. After that draw I all but fell asleep as I could barely move and couldn't really talk. They had to get me to my mother's van with a wheelchair because after 3 hours of this I was in so much pain and could hardly move.
So when I got home, I ate a few things I knew I could digest well. 3 hours after I got home I tested again (they sent me home with a glucose meter to try to get more information before I see my endocrincologist again on the 11th) and I was at 58. Grabbed some dinner at Wendy's then went to Kohls because my mother wanted to get some things. After about 30-40 minutes walking around in there I was really weak so I ended up spending the last hour in the store in a wheelchair. When we got home, I tested again (2 1/2 hours after eating) and got a 116.
This test went completely wrong from anything I was expecting/hoping for. I can't figure this out - and I hate that. I like to have a plan and/or be figuring things out. Now I just don't know what to do, because my body just can't seem to figure out how it is supposed to work, and it really has no clue what to do with food. I am really scared about what is going to happen from this. While they drew like 13 tubes of blood, if they can't find anything, I will be put through another test like this, only more complicated.
Another complication to the test is that while I drank 9 cups of water yesterday, I didn't get much chance to drink water until after the test, so during the final blood draw, my blood was incredibly thick. I didn't think you could go that dehydrated that fast.
Now tomorrow I have to try to figure out how to put my fear aside and go back to forcing my body to function just enough to make it through the hellish days at work. I honestly hate this.
One last thing, my mother said today that she never thought her kids would have more health problems than her, but she's now viewing her diabetes, back surgeries, and breast cancer as easier than what I'm going through. I tried to crack a joke: this isn't a contest... but I'm winning. I definitely don't want to be, but this is apparently just the way it is.
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