Sunday, November 13, 2011
I hate asking for help. It tends to turn out worse than if I hadn't asked. Whether it's a doctor who has no intention of helping someone who's being tortured by their own malfunctioning body or someone who means well but makes things worse by their inability to understand what I'm going through.
With winter looming, I've had to get a few things done around the house that I have no capability of doing on my own in my present condition. My father came up on Friday night to help with these. Friday night brought the realization that my car is seriously leaking coolant (it is puddled all over my garage floor) and must be fixed. The garage isn't open until Monday though - I left a voice mail asking them to call if they can get me in. I got some okay sleep Friday night then Saturday brought my father's need to get things done. It started with replacing the motion light on my garage - which my father was going to do alone but kept having problems with. So I'm outside pushing myself too hard to help him. Then I want to lay down for awhile but my mother sent up stuff of mine that she wants out of their house and I had to go through that. So I'm wearing myself out even more going though some of it (before I gave up and decided to just throw it downstairs and not care) while my father wraps the insulation around the pipe that was put into my bedroom closet a few months ago to correct the sump pump problem left by the cheap bastards that built this house 26 years ago. After we put some foam insulation strips in my upstairs window, I make him lunch just so that I can get him to stop for a little while and I can attempt to relax. Flawed plan, since it took him minutes to eat it. I keep saying I need to lay down and relax because I was blacking out, but there's this to do and that to do. Finally I lay down and watch part of a movie for awhile while my father plays a video game. When that's done, then it's time to get going again. Downstairs we put plastic on the bedroom windows, which was really difficult for me because it meant stretching up over my head - a dangerous move for someone who keeps coming close to blacking out. By the time that's done and I try to lay down again, my cat is being a major pain in the rear end. I had my father bring my cat's bags of food upstairs so I can mix the kinds together and rebag them. I do this about once every 6 months - it gets him a mix of kinds he likes, kinds that are good for him, and kinds that are cheap. But with everything I had done I was sitting there mixing his food and sweating badly. Not good - that's more calories being burned that I can't afford to burn. Finally I'm on the couch and ready to pass out for days, but midnight rolls around and I have to drag myself to bed. I barely slept last night and part of it included dreams that just made me incredibly angry (I don't remember most of them, but for several hours of being half asleep I was ridiculously angry!) Finally i just gave up and came upstairs to put on the tv quietly before my dad woke up. Good thing I was awake though, because since I got up my body has been rejecting everything I've eaten or drank for the past day or two. The pain has been increasing again (it's nearing as bad as it was when I got back from Mayo) and even sipping water is causing awful pain. My father took off pretty quick this morning, which is kinda good because now I don't feel pressured to push my body past it's current limits like I did all day yesterday.
It was good that my father came to help with these projects. Unfortunately, he doesn't understand anything medical so he can't understand how horrible it is on me to do all this. Also there's always been this expectation that I can't let him down - if he expects something will get done, I can't not do it. So his help is good, but he can't help in the ways I really need - to take care of me.
As for my car, I was hoping to replace it this summer. But because of all the medical issues and of course the bills for the worthless trip to Mayo I can't afford to anymore. Having this massive coolant leak could mean I have to replace the radiator - which could easily top $1,000. I am so totally screwed financially. Well my father pointed out I should probably just replace it and I had to explain to him how much these medical bills are costing me. Then he was talking to my mother on the phone and had an argument with her about me replacing my car. My mother has no real concept of finances, and I'm certain the dementia that's creeping up on her is making that worse. So my mother expects me to just replace the car, my father is disappointed that I don't have the money to just replace the car, and neither one is even considering the fact that if I don't get medical help soon replacing my car won't even be an issue!
So here I am, Sunday evening, in serious pain and feeling terrified. I can't get the medical help I desperately need, I have no idea how I'm going to fix my car that's quickly going to hell, I have no way of replacing my car so that it can help me last through the winter, and financially I'm falling apart.
After my body decided to empty out everything inside me this morning, I figured now is as good of a time as any to take some measurements. If you have a tape measure around you, go grab it and make a circle that's 25 1/4 inches around. That's my waist. Next go to 32 inches around. That's the distance around my hip bones jutting through my skin. I need to get a new bra - 2 years ago I was a 36C, now I think I'm a 32-34A. I hit 120 lbs this morning - that's about 3 lbs above being underweight (I'm about 5'7"). The last time I was 120 lbs I was in high school sports and I was mostly muscle - my waist was 27 and my hips were 36. My ribs and collarbone never stuck out this bad before. My cheeks were never this indented. I could eat and move without debilitating pain. Anyone who thinks that having these measurements is beautiful and being ridiculously thin is good - IT IS HORRIBLE! Nothing is worth this! I desperately wish I could eat again so I could gain back some weight. Somehow just tracing the edges of my collarbone causes it to hurt for about an hour - there's nothing good about it!
Since middle of last week I keep having these moments where I just want to burst into sobs, but I don't. I know how terrified I am to start every day. I know how I really have no hope that I can ever get better. But I cram all that down because it's impossible to go to work everyday appearing like nothing is wrong if those feelings are constantly gnawing at me. I feel like life is torturing me for something I did, but I honestly have no idea what I've done to deserve this.
If anyone knows how to get a free car or how to win a lot of money from the lottery, I could really use either. Also if anyone out there is studying medicine and can give me tips how to get a doctor to help me, I'd appreciate it.
Thursday, November 10, 2011
Earlier this week I received the bill for the 1 day of testing at Mayo. They're charging me $500 for the absolutely horrific endocrinology consult! I called and said I was really unhappy about that and was given the phone number for patient services. Today they called and I spent about a half hour telling them what happened and how ridiculously I was treated. I told them I had the tests done so it makes sense I have to pay for that, but with as badly as I was treated at that consult I don't think it's right to have to pay for that. But moreso, I want those doctors corrected and retrained about how to talk to patients. No one should have to go through what I did and they need help before they do it to someone else. The woman I talked to said she would start the investigation and anything she finds will be sent to a 3rd party for a decision about what should be done about what happened. She also said I could call if I thought of anything else or if I want to be updated on the progress - though she would call me and update me with what she finds.
I told her how bad I am now and how I can't seem to get the help - which is why I was there in the first place. She asked if I would come back down and I explained to her that I'm low on leave, I'm not yet eligible for FMLA, I'm my only support so I can't do leave without pay, and I don't trust myself to make that drive anyways. I told her I have another appointment nearby in about a month, though after what I went through last month I have no hope that this new appointment will do any good - I'm out of hope.
What do I hope to get out of my complaint? Well, I don't expect to have the almost $2500 worth of bills to disappear (I'll have to pay $500 of that out of pocket). I don't expect an apology (no doctor would EVER do that). I want them to be disciplined and retrained. Hopefully that will prevent them from treating someone else like that. I might never find the help I need, but if I can break down a wall or two so others can get help in the future, then that's more important.
I briefly spoke with a relatively new coworker today. She's in IT and it's her job to get our accounting-A/P-A/R system working properly. We haven't talked all that much, but she's really sweet. Just before my day ended she was walking by and I stopped her to compliment her on her wardrobe - she always looks so fashionable and put-together. I'm honestly impressed (and really wished I had an ounce of fashion sense!). She was shocked and said that in the morning she does a hard workout, showers quick, throws on her clothes, and is out the door. She's very fit and healthy (and very pretty too) and has great confidence, so I'm sure that's part of it. She said she prefers jeans and tees - I said I like sweats and the couch, because none of my clothes fit me right anymore (many of my pants fall off). She said I should eat more and I told her I couldn't because of my medical condition. I showed her where my collarbone is sticking out and her mouth dropped. I mentioned some other areas where the bones are sticking out (I'm just about ready to give an anatomy lesson without needing a skeleton for a prop) and her mouth dropped again. I very briefly told her about gastroparesis then gave her links to GPACT. It was time for me to clock out so I didn't want to go into it more (plus her jaw was going to detach if it kept dropping like that). I totally didn't expect to talk about that as I was heading out the door, but I think it's important to inform people. If you tell someone about a condition then they can share the information or they will have at least heard of it if someone they care about is afflicted by it. Interesting thing though, I told her Mayo treated me like crap and she wasn't surprised - she suggested I go to the place where I'm going next month. Well, we'll see what happens.
I've been debating doing some bell ringing again this year. I liked doing it last year and I felt good for doing it. The problem is with as bad as my health has been I think standing for 2 hours in ~40* will be too hard. The last thing I would want to do is collapse next to the red kettle! But if I'm going to, it's better to do it soon, before the snow comes and the highs get into the teens (above or below 0!) here in MN.
I'm falling asleep in my computer chair and it's 15 minutes until The Vampire Diaries, so I'll stop here so I can curl up on the couch.
Sunday, November 06, 2011
I stopped posting blogs for a few days because it's never fun being the person who's always a downer and can't ever seem to get things to go in a decent direction. Besides, it's really just been the same every day.
Every time I eat anything, my body hurts. Every time I drink more than a few sips of liquids (even water) my body hurts. My body is desperate for nutrition, but I don't want to eat because it hurts too much. Yet I can only hold off so long before I give in, and then I overdo it (as in I have more than just a small amount of food). I have no energy to cook (not like I can eat enough to make cooking anything substantial worthwhile) so I just want to grab a few bites here and a few bites there. There's no one to help me, so if I'm so exhausted I can hardly move, I'm only eating what tiny bits I can just grab and force down.
I would be willing to add 80 lbs and be 200 lbs if it meant I could digest food! I'd be willing to be ridiculed daily if it meant I wasn't in pain every time I tried to force my body to accept nutrition (of course I already am ridiculed daily, but still). I wish I could understand why the medical community feels I deserve to be tortured instead of helped.
Every morning I wake up, whether I have to drag myself to work or just lay around the house, I want nothing more than to just fall back asleep (without the dreams of course). Every evening when I get home from work I just want to lay down and not move. Every time I go to eat something I want to believe it won't hurt this time, but it does. I no longer have any interest in my future because how can I believe I have one when everything is so horrible for me and just getting worse?
I HATE being a downer. I HATE having things wrong with me that no doctor has any interest in believing in or treating. I HATE being so beaten down by my life. I want hope. I want a future. I want to be able to eat without being in pain. I want to be able to live a real life, not just barely survive and exist from moment to moment.
Wednesday, November 02, 2011
One thing I really don't like about working is having coworkers. Some are good, some are okay, but unfortunately I tend to end up surrounded by coworkers who are rude and lack empathy.
I turned 30 this past summer. Everyone at work ignored my birthday. Completely. Others get cakes and a 15-30 minute get together where we can all mingle. My boss's birthday is coming up and you know what everyone was suggesting? They want to have everyone make food and have a pot luck! Wanting to do that when they know they have a coworker who can't eat is horrible! I ignored the emails because the last thing I want to do is get furious and fly off the handle when I was already fighting collapsing. It's one thing to offer healthy options when someone is dieting - it is an entirely different thing to expect everyone to participate in a huge pot luck when one of those people has a serious medical problem and they're clearly wasting away in front of their eyes! After I didn't respond in about 2 hours, they 'were talking about it' and decided instead to have just a cake and give the boss lottery tickets.
I desperately wish I didn't have to work. I wish I could get medical help. I wish I could focus completely on getting better and not have to be surrounded by people who treat me like I'm a complete moron, say terrible things to me, then shove it in my face that I can't eat and they can pig out and not care!
Today I took a quick look at the signs and symptoms of malnutrition and malabsorption - I'm a classic case. I should be able to walk into any emergency room and be given help in minutes. I shouldn't have to beg, plead, and fight to have someone even listen to me. I can't help but wonder if I have an invisible sign on my forehead that says 'torture her - she deserves it' or if the medical community is just so ignorant and uncaring that they've completely forgotten what the signs are. I haven't hit 1,000 cals a day in a week and a half and I need 2,000-2,300. The pain in my left side keeps growing and now my right side is hurting also. I can't sit up straight. I'm shuffling instead of walking. My brain is SCREAMING for nutrition. I just want medical help!
Tuesday, November 01, 2011
There's a guy at work that's trying to look out for me. He's the only guy in our HR dept, and he actually seems to care. He is trying to get me to keep going to doctors, and to keep trying to get help. We duck into a conference room now and again to talk and he keeps asking what he can do to help, but there isn't really anything he can do. Well, today he actually looked scared as we talked. He pointed out how skinny I look (not healthy thin, but anorexic/sickly skinny), how badly my cheeks are indented, how my eyes are sunken, how bad my skin looks and my lips are chapped (from dehydration), and how my clothes are hanging off me. Today I had to take the rings off my hands that I've worn almost constantly for over 10 years. 2 years ago I could barely get them off my fingers; now I can hardly keep them on and I couldn't touch type at work today because they kept twisting and trying to fall off. The pain still keeps coming and going also. It made me really sad to see him so scared as he realized all this.
Today I tried calling the UM Physicians again to see about getting a GI appointment - it's Dec 7th, but only a half hour. The woman who scheduled it was terribly rude and did not care about customer service. I'm definitely not getting any hopes up that they're going to do anything. I'm not doing well at all, so who knows how I'll be a month from now. I won't even hazard a guess to next week or tomorrow.
I wish I could figure out why doctors don't want to help me. I wish I knew why they can't see how desperately I need their help. After I collapsed a few times last week and then this guy at work said he was afraid of me passing out and not being found for days, I've had nagging thoughts in my head about what would happen if I collapsed in the shower, at work, while driving, etc.
Malnutrition isn't a joke. It isn't fun. Very quick weight loss and being 'extra skinny' is not beautiful and doesn't make someone feel good and proud of who they are. It is pain. It is torture. It steals who you are. And it is terrifying.
What I wouldn't give to have my digestive system accept food again!
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