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!
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!
Get An Email Alert Each Time 1STATEOFDENIAL Posts