Thursday, October 27, 2011
Last night I happened to see a commercial for the University of Minnesota Physicians. It said "The first thing we cure is fear." I looked on the website and it says they have a motility clinic and treat gastroparesis. So first thing this morning I called and said I really needed help and tried to give a brief explaination of the situation I'm in. They said it sounds like an emergency and I have to call 911. I explained it won't help to go to a place that knows nothing about GI conditions and last year refused to admit me after I went a month with very little food and little water. They refused to help me and insisted my only choice was to call 911.
I called Mayo again to ask them to send my records back to me. She asked me what was going on and I told her how I've been getting much worse since I've gotten back and how horrible I felt after the way I was treated. I explained I just wanted those here because if I don't make it at least someone will have my records that maybe someone else will be helped when I wasn't. I told her I was promised twice that the doctor would call me and no call ever came. She went and found the doctor and I was told she would call me this afternoon. Over 6 hours later she called me. I told her I hate how I was treated, how it seemed no one believed me even after what happened on Tuesday when trying to prepare for one of their tests, and still no one showed concern and that's why I left. She started saying there was a couple tests they could run in addition to those they were already going to do. Well, let me guess, it's going to take another 2 months before I can get those done? She said it might be just a week or two. Well, I can't make the drive back there when I can hardly walk. I'm in severe pain, I can't get food down, I can barely sip water, my insides feel like I'm being torn open and set on fire, I've now collapsed twice, I can barely walk (my legs collapse without me actually blacking out), and I have no one to drive me or help carry me. So I have no ability to even get there even if she was going to start taking me seriously.
I'm supposed to be back to work on Monday - I have absolutely no idea how I can do that. The pain keeps getting worse and it's not like I can move around. If I don't go back to work I'll probably lose my job. I'm not eligible for FMLA yet and my boss also told me I have to bring in a doctor note to prove I was actually at Mayo, even though I took vacation because she could just deny my vacation. Of course, I have no such note. If I lose my job, I lose my health insurance.
When I can't get food into me (like now) I've found that for the first couple days I'm very hungry and have to remind myself that food will only cause pain. After that I stop being hungry and the only thing I have to fight is the habit of eating. Today started the lack of hunger so I don't have to worry about that much now. Thirst is bugging me more though, and since when I drink water it causes pain I'm trying to have no more than tiny sips now and again (which is difficult because my tongue and throat have been burning since Monday). My temperature has been fluctuating based on how I'm laying or if I'm sitting/standing. It's going between mid 97s and low 99s. It seems when I lay on my back which causes the most pain that's when it spikes. Not going to help knowing that though. I've barely slept since Saturday night also. I don't know why I'm not sleeping (I'm not trying to be awake). Other problems have shown up also, but I'll spare you all of those. It's also kinda concerning that I've been showing signs of worsening malnutrition for months but no one thinks that's possible.
My cat is being incredibly affected. He's been having several nightmares a day (he starts growling and whimpering in his sleep and I can hear him across the room). I call to him and he wakes up and comes right to me and wants to lay with me. That's the ONLY time he will ever lay with me without me making him. But earlier today he came over, sat on the floor, and I was just barely petting his head (which he normally has no problem with), and he bit me! It was totally out of nowhere. That's not typical. It wasn't bad, just pressing his teeth on my hand for a second. Normally I yell at him and bop him on the nose with a finger (he hates that so I don't even have to do it hard), but today I started crying (now even my cat is saying he's done with me!) and asked him if he doesn't love me anymore. He thought about it for a minute or two then jumped up on the back of the couch to sit by my head. But I haven't touched him since. Cats can tell when a leader of the pack is sick and will show compassion, but when they sense the alpha is very sick and would 'slow down the pack' then they tend to threaten and push that animal out of the pack. It's an instinctual thing. I can't blame him for feeling like that - even indoor cats have instincts that show up.
I've lost 4 lbs between Sunday morning and this morning (2 of which were just since yesterday morning). SP is congratulating me and telling me to adjust my calorie range as I lose weight. Um, I'm about 6 lbs above being underweight right now - you'd think SP would be smarter than that.
I've been trying for a couple days to figure out if I have any options left. I'm kinda just laying here watching tv, expecting to either die or spontaneously be cured. Neither seems to be coming quickly, even while the pain is spreading and worsening. I just have no fight left and no more options (that have a favorable probability) that I can come up with. It would help if I had anyone who could stand by me and drive me around. But this is where I am.
Wednesday, October 26, 2011
I'm sorry. I feel like I've let down my sparkfriends. I've always tried to seem strong, help others as much as I can no matter how I'm feeling, and attempt to have hope. Hope is a funny thing. A year ago I read a book written by a survivor of Auschwitz about his search for the meaning of life. He pointed out that when people had hope of rescue, of finding their families, or at least of receiving something as simple as cigarettes or food they could survive incredible amounts of torture, malnutrition, and pain. Once a person lost hope they had only a few days or couple of weeks before their body failed and they died. The author believed that the meaning of life - what kept people moving forward - was to have hope for their future and for future generations.
The human body is an incredible machine. It can survive horrible pain and torture. It can survive without food or water for days to weeks, as long as the spirit has hope and the will to push forward. The brain must have nutrition and water to function properly, yet somehow hope gives the brain enough power to function at minimal levels without these biological necessities. Thus, where does the body end and the mind and spirit begin?
I've struggled for many years to find shreds of hope. What can I look forward to? What can I honestly believe is possible to happen to give me reason to believe that tomorrow, next week, or next year will somehow be better than today? What is real hope and what is false hope that will only disappoint? I knew going to Mayo had a possibility that I could be helped, but my track record with doctors led me to believe that it was better to hope for the best, plan for the worst, and expect little. That's what I attempted to do, but it didn't prepare me for the rejection and absolute disregard I'm feeling right now. The complete loss of hope I'm feeling is allowing my body to collapse around what's left of my spirit.
Many times I'm my life I've felt I couldn't survive what was happening to me. When it's physically impossible to survive something but you somehow pull through it makes you question things. I've often wondered how it was possible to survive something that you had no intention of or explanation for surviving. What force is out there to keep someone moving forward when they lack the will and hope to push through? When one has no faith, little support, and no hope of a worthwhile outcome, how can they survive? What keeps the body going when the spirit inside is lacking?
I have no idea what to do now. There are no more doctors I can turn to. I don't have the money or ability to travel long distances. I lack the strength to stand up and scream that I deserve better. I don't have people around me willing to physically support me. I lack the physical ability to continue fighting my body daily.
I'm sorry to admit that I'm weak. I've held myself up through everything, pushed through ridiculous circumstances, and denied my body it's request to break when it became physically ridiculous to expect it to continue on. My spirit has been broken many times and I've wanted to give up, but something didn't allow it. At some point there will no longer be one tiny thing holding the last thread together. No one knows when that point will come.
I blackout constantly. I often come close to fainting but I deny myself from letting that happen. I know with a lack of hope I can't fight my body much longer. A little bit ago I attempted to walk about 20 steps from the couch to the kitchen to get some gelatin fruit snacks. Usually my body will accept rice krispie treats fine, but when I had one yesterday it caused a lot of pain - that's the only thing I've eaten since the McDonalds I forced down my throat Monday night. Simple carbs can be absorbed through the mouth without the body needing to digest anything and the glucose can be delivered to the brain quickly (this is why people at risk for hypoglycemia are supposed to keep glucose tablets handy to suck on). I was hoping sucking on some fruit snacks would help me. Unfortunately I was a few steps away from the kitchen and collapsed. I can't tell you the last time I collapsed like that. My legs folded and next thing I knew I was laying on the floor. Luckily the carpeting upstairs in my house is incredibly plush so it only hurt my knees a little and my face from my glasses hitting the floor. I laid there for a few minutes before I slowly got up, grabbed the snacks, and slowly made my way back to the couch. I'm laying here slowly sucking on one at a time as I type this.
I can't force doctors to help me and I have no more fight in me to convince them I'm worth helping. I have no more plans or ideas for how to deal. I don't know what to do.
I am so sorry to let you all down. I'm sorry I'm not enough. Know that I won't do anything ridiculous or stupid, but I just have no strength left to keep fighting. I'll be here as long as I can to help support all of you because each of you really deserve to meet all of your goals and succeed in your lives. Even though I can't fight doesn't mean you shouldn't. Keep pushing forward, setting goals, then blowing those goals out of the water.
Tuesday, October 25, 2011
This blog WILL BE TMI, possibly even to the GP team. But I have proof that things are wrong with me and the doctors can't hear when I speak so I'm putting it here.
Yesterday I was in my hotel a little before 330. I was already in pain and falling apart mentally. I laid in bed watching tv until 9 when I went down the street to McDonalds. I haven't been there in about a year and a half (since all this started). If the Mayo doctors say there's nothing wrong with me, I'm going to prove to myself that I'm right! I got a 20 piece nuggets and a large fries. I pounded down 14 of the nuggets and 2/3rds of the fries (which is more food than my body has been able to handle in a LONG time) then laid in bed in absolute agony and torturous pain, praying to throw up, but knowing it would just mean more pain, so I would cry, then stop, then cry, then stop... finally dozing off about midnight. I slept fitfully until about 4 am when I woke and laid in bed for an hour and a half with my body screaming in pain. Everything hurts so bad! My throat is on fire, my stomach is popping out past my ribs (when I lay on my stomach and breathe in I can literally feel and hear a 'pop'), my abdomen is hanging forward, my head is throbbing, even my legs are cramping and going numb. Will the doctors listen to any of that? No way in hell, because none of that is statistically probable.
I'm supposed to have a test today at 330 to test the muscles in my rectum. This means I have to do an enema an hour before. Well, I'm supposed to be out of the hotel at 11. I was asking to have a late checkout at 3, but considering how horrible I feel I figured I might as well do it early to see if the enema will even work. PROBLEM! The liquid doesn't want to go in! I fought with it and got part in and holy krikies it HURT! When I got the last of it in there was tearing pain and severe burning that had me sobbing and almost crumbling to the floor. If that's just the liquid to clean me out, I can't do this test! It doesn't help that after the severe trauma I went through a few years ago, each colonoscopy has been torture (one they had to put me under deep anethesia to even do the test, the other I stopped breathing numerous times and all I remember is them shaking me and yelling at me to breathe) - I can't do a test that's going to cause this much pain where I have to be awake. I CAN'T DO IT! There is only so much physical and emotional pain a person can handle and I'VE HIT MY LIMIT! I'm not going to add to it just to be told there's nothing wrong!
Add to the fact that I've already been told several times that there's nothing wrong with me, that all my previous doctors had no idea what they were doing, since they have no actual test results from anything I can't actually have any of the diagnoses I've been given, and that the only thing that could POSSIBLY be wrong is in my head! I have learned to live with symptoms that most people are certain they're dying if they have them, but I can't keep living like this. Yet when no doctors will take me seriously, what else am I supposed to do?
My entire body hurts ridiculous bad right now. (I feel like Cas full of Leviathans.) I keep breaking into crying fits. I have gotten no hope or belief that the doctors will help me, or even listen. So I just called and cancelled all my tests. They're not listening, they've given me no hope to think they're going to help, and I can't handle the pain anymore. The person said they'd have one of the doctors call, but considering that's what they said yesterday and it hasn't happened, I highly doubt my phone will be ringing.
My hotel room is almost packed so I'm going to go pull my car up, load out, and head home. I'm going to have to decide if I'm going back to work tomorrow or not. I've not eaten yet today and I doubt I will - drinking water is hurting right now.
Coming to Mayo was a HUGE MISTAKE. This was an absolute waste of time, money, and energy. I have no intention of pursuing any further medical intervention. I will go back to dealing with everything on my own. If it means I'll end up with going back to not eating whenever I'm upset or in pain, so be it. I lived a month without food and being told that no hospital would admit me just because I couldn't swallow any food or water for weeks. I wonder how long until I end up breaking that record.
Monday, October 24, 2011
(No need to leave comments or anything about this. I know what everyone wants to say. I just had to say this stuff somewhere. If you read it, I'm sorry to put you through that.)
I kept putting off going to Mayo because of an overwhelming fear that I wouldn't be taken seriously, that I would be told there's nothing wrong with me, that it was all in my head, and that nothing was going to be done to help stop the torture of my body malfunctioning.
That fear has been completely justified and has come true.
Apparently I'm not worth helping. Instead I get to be told that everything I've known for the last year is wrong, that every diagnosis I've gotten is wrong, and that nothings going to be done to help me.
All I want right now is to go home and completely give up. I mean absolutely give up. If the doctors at Mayo say that it's all in my head, I will never get help anywhere. So what's the point with spending a lot more money, wasting everyone's time, and destroying any tiny piece of me that might be left that thinks I'm worth fighting for, just to be told that there's absolutely nothing wrong?!?!?!
According to the Endocrinologist here, the Endo I had been seeing has no idea what he's talking about, she has no tests to look at so there's no way that I can have any problems with my blood sugar, and there's no reason for me to see her. But she made me sit there crying while she kept telling me over and over again that I was wrong, my Endo is wrong, she has no tests, there's nothing wrong with me... I asked her 'so are there any tests you want to run or are you done with me?' I was ready to just leave, but even after asking her that 3 times she just had to punch it into my head that there isn't anything wrong with me! I just wanted to know if I could freaking leave! Finally she says she'll run a few fasting blood tests. So thank you very freaking much for spending more of my money and time when you've just said a half dozen times that there's nothing you can do for me. Of course then she also looks in the record and sees results from the gastric emptying study this morning (I'm supposed to have a 2nd part to that on Thursday) and apparently it says it was totally normal so clearly I must be lying! Apparently, I don't have Gastroparesis and the pain and problems are once again ALL IN MY HEAD.
I've been sitting in my hotel room for about an hour and a half and every piece of me says I need to just get in my car, drive home, and never see a doctor for anything ever again. A few minutes ago I called the GI office and asked if it's even worth me staying and continuing these tests when the first one came back and reversed the one diagnosis that I thought was finally going to get me answers and help, the test tomorrow I think is ridiculous because it is for something that is the absolute least of my problems, and when so far 2 of 3 doctors have made me want to quit. She said she'd ask the doctor who I thought would help me (but will not do a follow up with me) to call me. Yeah, why do I doubt that's going to happen? Or if she does, why do I think I'm going to get a serious run-around that's going to make me feel even more STUPID for trying to trust her?
I've put one helluva huge fake smile on my face all day today (well, until the Endo appt anyways) and I've tried to believe they would help me. I've told them I'm willing to do ANY test they want to put me through just to figure this out. I've tried everything I can think of to give them whatever information I can. I guess there's nothing I can do to ever convince anyone in the medical community that I'm worth helping, that I'm worth saving, that I don't deserve the torture I've been living through.
Though it's not like my family thinks I'm worth anything, so many 'friends' have given up on me, and no matter how hard I try I'll never be able to get my brain working enough to have a career worth having.
Coming to Mayo was a mistake. Now I'm thinking about going out to grab the worst, greasy, disgusting fast food I can find and eating until my stomach revolts, then eating more. I'll prove to myself over and over how horrible my body feels because I'm the only person who will help me and who will believe me.
Sunday, October 23, 2011
I have an hour and a half until I have to start fasting for my early morning test. When I'm starting fasting is when I'm hoping to be in the car and on my way to Rochester (Mayo). It's about an hour and a half drive, I'll check into the hotel, get settled, then I have a decision to make.
The less sleep I get, the less chance I'll be able to digest. If I go to sleep around 11 and get up at 630, I'll have about 7 1/2 hours of sleep which means my digestion could be working halfway decently. That's the LAST thing I want. So I might just stay up extra late and try for about 4 hours of sleep. That will mean my body will be HATING me, but that should help the test prove what's wrong with me.
I hate that my condition gets worse then better then worse then better, while most of the people I've talked to get to a point then pretty much stay there unless they slowly get worse. Considering too many doctors play the statistical probability game (if the patient doesn't match the symptoms of most of the rest of the patients, they they can't have the condition), the last thing I want is for things to decide to work during a test that is absolutely pivotal for me getting help!
Anyways, so I'm taking my laptop with me and the hotel has wifi, so I should be able to keep in touch the whole time I'm down there. I was going to just plug in my laptop to charge it but realized I haven't used it in awhile so I had it look for updates... I haven't turned it on since December! It took like 2 hours to download and install the updates, now I'm loading a virus protection program on it (I killed the old one I was being charged for probably a year and a half ago, but I rarely use it so I hadn't gotten to loading the new one.
I'm going for tonight and Monday night, coming back home for Tuesday and Wednesday night, then going back for Thursday night. It's a lot of driving (150 mile round trip) but I'll actually save money from having 2 less nights in a hotel and I'll be able to leave my cat at home (he'll hate it, but he can handle 2 nights alone).
So I'm nearly packed. I'm trying to shove a bunch of food I really shouldn't have into me to keep me full until I can at least get to the hotel. Soon I'm going to start packing my car, spend a little time watching tv to relax before the long drive, and then get on my way.
Thank you again, to all of you who have been supporting me through the build-up to this. I'm still scared, still not sure I'm going to get the help I need, but I know I have several people rooting for me - and that means a lot. As I'm sitting there, freaking out, wondering how I'm going to make it through, I'll be thinking of all you.
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