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!
Tuesday, November 01, 2011
Nothing like going back to work, after an atrocious week of terrible doctors and horrible pain, just to have the bully coworkers decided to take everything they hate about themselves out on me. Plus, they decided to revamp our computer system while I was out so that not only was it not working right, but it is going to seriously slow me down. Since the bully coworkers like to take their time and go slow, they didn't want me explaining to the boss why I liked the way I had my system setup. So when I mentioned it to the gal from IT who was doing it, my boss starts bugging me about it. Well, it was much more efficient and now I'm going to be much slower. She starts asking me if it makes me go so much faster, will everyone go faster? Um, I can't say that. Especially since if I get my way the bullies are going to fly off the handle on me! The boss wouldn't let it go and is saying it in a way that makes me think she has no interest in doing it my way - which I've learned to expect because some people think I'm a complete moron - but at the end she suddenly says that if it's more efficient then maybe she should tell her boss to make it manditory to have it my way. GRRRR! I'd like it my way, but not if the coworkers are going to get janky!
Things did get a bit better tonight though. I love giving kids treats on Halloween. It's so great to see the excitement they have and how proud they are of their costumes. Tonight one of the kids said I'm his favorite house! I don't give out a handful of treats then close the door. Tonight I offered:
glowsticks (to hang around their necks and help them be seen)
fruit leather (I had a bunch on hand but I can't eat them right now so why not?)
pencils with a squishy skeleton wrapped around them
vanilla tootsie rolls (one of my favorite treats)
3 musketeers fun size
snickers fun size
Believe it or not, the kids and parents tend to like the glowsticks and pencils the most! It's something they're not going to get at most houses. Most kids get some of everything, but I also give based on age (like older kids don't need glowsticks and toddlers don't need pencils). One of the parents even said that next year she's going to give out glowsticks because she loved the idea.
Halloween shouldn't be just about candy. Costumes are fun but when a kid comes up in an apparently cheap costume it's great to say something nice and help them feel special so they understand it isn't about having the best costume but about enjoying the fun. This is the 2nd year I've handed out things other than candy (though I do give a little candy) and both times the extra stuff has been a hit. So anyone out there who is wondering how to get through Halloween without eating half of the stash, go to a cheap party store or a cheap 'get it all here' store and buy a few cheap toys to give out. The kids will like it and you won't have to worry as much about sneaking candy! I spent as much on the favors as I would've if I had gotten a bunch of candy. Plus the 'leftovers' can sit until next year!
BTW, if any Supernatural fans haven't seen it yet, check out Mandi99P's blog about her halloween costumes. Her Castiel costume is genious!
Sunday, October 30, 2011
I get the Sunday paper delivered to me every week so I can get the coupons. I've been trying some moderate couponing lately (none of the extreme stuff!) and it definitely has it's ups and downs. Well I flip through the paper and look at other things as well (I have it and pay for it, so why not?) and I want to share my horoscope from today:
"You know you're supported, even though that support may be rather intangible right now. Friends are wishing you well, and you can feel their encouragement on the breeze."
I can't adequately thank everyone for the support they've shown me. It's unexpected and I'm not sure I'm worthy of it, but thanks none-the-less.
I'm supposed to be back to work tomorrow. I'm going to attempt it, but I already know it's going to absolutely suck. After spending 5 1/2 days mostly laying on the couch (and sleeping there since it's been difficult to get up and down the stairs to my bedroom), having to get up, move around, go to work, explain the horribleness of last week, and yet pretend that I'm fine, I have the feeling by the time I get home I'm going to want to just lay down on the couch and not move an inch.
Today I took a shower and I realized my skin is suddenly feeling like oiled leather and that even when I bit my fingers I couldn't really feel pain. A few hours after the shower, now my skin feels slightly closer to normal and that I have a little more pain reception, but not enough. That's kind of concerning, but there isn't anything I can do with the information.
I've only been able to get in a couple hundred calories a day since Tuesday. Again, that should be something to be concerned about, but considering this has happened plenty of times in the last year and no doctor was concerned, there isn't anything that can be done. Hopefully in a couple weeks I'll be back to the 2,000+/day I need to maintain my weight. In the past week I lost 6 lbs but gained 1 back. To all those who wish they could see that kind of a weight loss, IT IS NOT WORTH THE PAIN, AGONY, AND LOSS OF BRAIN POWER!!!!!! I don't have the weight to lose in the first place, and being forced to drop that many pounds that quickly is like slamming a hammer into your head - there is nothing good about it. And when your body doesn't even want to accept water, leaving it sloshing in your stomach for an hour or two, you start to wonder what's the point of it all? I am absolutely craving a cheeseburger. I want fried foods and salads and corn and berries and nachos and all the foods that I haven't been able to have for over a year. I'm ridiculously glad I have a dvr so I can find ways to fast forward though as many commercials as possible because seeing commercials for food is torture to me.
My father's birthday was yesterday and I totally forgot. I called him today and bypassed questions about how I was doing to ask him what was going on there - it seemed stupid to call about his birthday then have all the talk be about me, especially when he can't handle anything medical.
Saturday, October 29, 2011
When you have no idea if tomorrow will come, but have promised to not stop tomorrow from coming, all you can do is watch the hours pass and see how things look when you wake up. That's where I'm at.
This morning I woke up with minimal pain, a little more energy (in no way can that be considered a normal amount of energy), and I'm not blacking out as much. I thought I might be doing better, but after eating a few things the pain jumped a little and the blackouts started increasing again. My abdomen was totally flat when I woke up and just a little food caused it to distend right back out again. I did finally have the ability to walk out of the house and across the street to get the mail (first time since I risked it on Wednesday afternoon because I had to get bills out).
I'm not sure what to think. I was honestly hoping that giving my digestive system a few days 'rest' would help it feel better. It's worked in the past. But I should have been able to eat a little more than I have the past few days without having the problems come back instantly. It's so incredibly frustrating! It makes me wonder if I could get some doctor to put me on TPN for a month or two if it would help, but I can't even get them to put me on a potassium chloride (the fluids they give when you're dehydrated and haven't been able to eat for days/weeks) iv drip!
I've thought about what few options I have... I can go to work on Monday and put every ounce of energy into getting through another month and a half of work before I can go on FMLA and then attempt to see the UM Physicians here in St Paul. I could work and call and see if that one doctor at Mayo has thought about what I've told her and really is willing to get me into more tests - if they're scheduled far in advance maybe they can get them closer together instead of spread out over multiple days. But I'm not sure if I can make it that long. If I collapse at work like I did at home on Wednesday, that will not be good! No job means no health insurance, and getting on disability means first finding a doctor that will help me.
Of course all this is complicated by the fact that my homeowners association is the WORST! This is MN so the snow will be starting soon, and once the snow starts there's no guarantee I can get out of my house once it does. The only way in and out of my townhome is my front door, but most of the association can get out through their garage so the HOA doesn't want to shovel the walkways until 2 hours after the snow has finished falling - in the past 2 years there's been 5-6 times that the snow took 3 DAYS before it stopped. If I need medical attention, I've been told there will be a charge for the cops and/or first responders to dig out my walkway. So scheduling appointments between November and April will risk me not being able to make the appointment.
Having sociopaths for neighbors doesn't help either. I fell asleep a little before 1 last night and at 330am I was woken up to my drug dealer neighbor throwing a massive house party with people standing outside whooping, hollering, and yelling out of drunkenness. I've been sleeping upstairs on the loveseat in my living room because it's been incredibly hard to make the 2 - 1/2 flights of stairs up or down to sleep in my bed downstairs. This, of course, made the party noises even worse. So there I am, so tired I could barely speak, and I'm trying to get the cops to come out and shut the party down. I raged on for at least another half hour before I heard the cops show up. Though I guess I'm lucky - this time it stopped the party right away instead of them turning it down for 5 minutes then cranking it again.
Another option is I thought about calling the ER nearest to me and asking them if I came down if someone with GI knowledge would be on staff and/or someone who knows how to handle malnutrition - the problem is when they don't believe in your diagnosis, they will do everything but what you desperately need. Plus the GI specialist I'd be seeing would probably be the last guy I saw at the specialty clinic that diagnosed me, but couldn't tell me what the condition meant or if there were treatments available. This is the guy who flat out refused to write a note to Mayo for me. So having him see me while I'm there basically guarantees I will not receive the help I need.
To be honest, I completely understand that a person feeling better when they DON'T eat for days or weeks is really freaky. Doctors who keep shoving mental health medications at me will be certain to claim I'm doing it on purpose. The more the patient denies it is a mental health condition, the more they're certain of it.
I guess I'm just going to keep to thinking 'I'll see what happens tomorrow'. Something will change eventually - better or worse.
One last thing: I've had a few people mention celiac or just gluten intolerance. Thank you for the idea, but that is highly improbable. My BIL's mother and some of her family have celiac and my condition is nothing like theirs. All fiber and fats cause issues with me (which matches my gastroparesis diagnosis) and my saliva/teeth has little ability to break down many meats (steak, pork chops, roasts, even some fish) so it's more like I can't digest anything, not just one ingredient. When things are bad, simple carbs are the only thing I can have without problems because the mouth can absorb them through sucking instead of needing to digest anything.
Saturday, October 29, 2011
I have to say thank you to Amy for sending an explosion of support my way. That's definitely not something I'm used to. I'm the kinda girl that some people attempt to envy but most people just hate. I've spent most birthdays alone - my 30th birthday this summer was pretty much ignored by everyone. I can't tell you the last time someone asked me to come to a party or event out of anything but pity and then stayed my friend afterwards. People tend to want nothing to do with me, especially after I open my mouth. I'm too intelligent for most people to want to talk to, while I'm too stupid to be able to appear perfect the way people tend to expect. My past is full of pain and anguish and constantly having to fight for anything and everything - including just to keep what little I have.
30 years of constantly fighting my body, begging people to stop physically hurting me and emotionally torturing me, and failing at finding any reason for my existence has worn me down to the point I know I can't fight the doctors any longer. They refuse to believe anything I say and only wish to drug me with medications that make it impossible for me to be an intelligent human. They can't imagine that my physical issues aren't all in my head. They're constantly finding fault in anything I say and use it as a reason why I don't deserve medical care. I know it makes no sense, but this is always the way it has been. My mother causes medical problems in herself (alcoholic, long time smoker, never ever exercises, overeats constantly even with diabetes, refuses to get help for mental health conditions that destroyed any chance of me having a decent childhood, etc) and because of this, doctors tend to get annoyed with her constantly coming up with things that are wrong with her but then refusing to change her lifestyle. As I was growing up, whenever I'd have to go to the doctor she'd screw up the story or blow something out of proportion because then she'd get attention. Thus too often I didn't get help for what was really going wrong. Since my father wasn't around during my childhood (constant work trips, not actual abandonment), I had no one to turn to for help. My only sibling, an older sister, always found ways to be out of the house so I was the one to deal with my mother all the time.
Thus I can't rely on my mother. My father can't handle any medical issue (he thinks if you ignore it, it will go away) and he's not happy that I'm currently refusing to deal with my mother until she gets some mental health help. My sister is wrapped up in her life and tends to be OCD - what is right in her head is the only possibility so because I'm different than her I'm usually thought of as unworthy.
The friends I've known in real life tend to run away from me. As one said, "you're too sick to be friends with" and "because you can't eat like me you're destroying my life" so at this point I can't count on any of them for anything (not that I ever could). I haven't had a best friend in 9 years because when I let someone get close they tend to use and abuse me or leave me when I'm most desperate for their help.
So hopefully everyone can now see why I don't see a reason to fight anymore. The greatest dreams of my life have past their expiration date, I haven't seen much of a future for myself since I was about 8, and my medical issues have just continued to worsen. Eventually everyone reaches the end of their strength.
The irony of my life is that no matter how many times I should have died, or how many people attempted to kill me, here I am. I can survive a month with almost no food and very little water. I survived being choked until my heart stopped for a minute or two and no CPR. I have headaches every day of my life, some being worse than migraines. I can't remember the last time I went a whole day without some pain or physical issue distracting me from my life. Yet I have to learn to live with it all because I can't find help to figure it out. Most likely I've been malnourished for at least a year, if not longer. Eating 2000-2300 calories to maintain 130 lbs at a little shy of 5'7" makes not a lick of sense, especially when I don't exercise at all, move as little as possible, and have a desk job. Eating that much and still fighting to not lose weight is a sign of a lack of nutrient uptake. Yet because I'm constantly fighting my body, the doctors refuse to believe it's possible because they can't see it when looking at me.
So what did today bring? I woke up with no pain this morning. Within a minute of taking a few sips of water it was back. It seems whenever I sip liquids or have any kind of food (even fruit snacks - pure simple carbs) it 'wakes up' my intestines and that causes the pain - the more noise coming from my intestines the worse the pain gets. I can go an obscene about of time without adequate food and water, but it affects my brain very badly. Throughout the day the pain seemed a little more dull, but it's probably just the lack of glucose in my brain affecting the nerve responses. Plus now, even when laying down, I can just turn my head and blackout. That's not incredibly abnormal though - I've had issues with blacking out for around 15 years. Doctors don't believe it - when a few tried a test or two to figure out why, they couldn't find why because they refuse to pay attention to what causes the blackouts (my neck).
My cat had 3 or 4 nightmares today. It's getting out of hand. My poor little boy is just terrified. I tried petting him a couple times but not for more than a few seconds - I don't want to be bitten again. I wish I could take better care of him, but making it down the stairs in my townhome for anything and then getting back up takes at least 20 minutes (should be more like 30-60 seconds) so cleaning his litter box is hard - I'm not even going downstairs to sleep in my bed because it's too hard to get up and down. Even going to the kitchen to give him a treat is too difficult most of the time. Heck going to the bathroom 20 steps from the couch can take 10 minutes!
Still, even with all the manifestations of physical problems, going to the ER would be stupid. Last year after losing 15 lbs (from 140-125) in less than 3 weeks because of my stomach problems wasn't anything to be concerned about for them. Considering I read in a book at the patient library at Mayo that losing 5% of your body weight in a month is dangerous, losing more than 10% in about half that time should have been taken incredibly seriously. They wouldn't even consider admitting me! Even before that I went in with serious symptoms that were caused either by a doctor increasing a medication and overdosing me or a massive infection in my cheekbone (that was penicillin resistant) spreading to my brain and I was told I had tooth pain (turns out it was the overdose but the doctor would not consider the possibility). Going in there with pain that 'doesn't make sense' or is 'impossible' will get me a raised eyebrow and told to leave. Unless I'm bleeding overtly, missing a limb, or completely unconscious there's little point in requesting help from the ER.
Thank you to everyone who's shown concern and support. I wish I had a viable option in which I can reasonably expect some kind of medical help, but I honestly can't think of a single idea that has a chance of working. I have a better chance of having a spontaneous cure than I do of getting medical intervention.
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