Sunday, September 11, 2011
One thing I didn't mention about my last Endo appointment was that he wanted me to take a picture of my distended abdomen. Not sure why, since a picture won't really do it justice. I decided to take it a step further and I've taken multiple pictures all day today to show the progression. Most Saturdays I spend the day laying on the couch and relaxing. Instead, I spent today moving around, doing some cleaning and laundry, and didn't lay down at all. I did this on purpose - my body seems to not be able to digest when I'm standing and moving around or at least sitting up. I also ate foods that my body doesn't really like right now. Throughout today I've been taking 4 pictures in a set about a half hour after each meal. 2 are side views and 2 are front views and each set has one where I'm tensing my abdominal muscles and holding my breath and one where my abdominals are relaxed. The scary thing is you can seriously tell the difference from the first pictures to the last! And today wasn't even one of my worst days!
I'm incredibly exhausted though, after doing an hour of cleaning my bathroom and not laying down all day. I took the meds that knock me out so I should sleep through the night (except on Sundays I have to get up between 6-8 to get my paper before my neighbors steal it, so I'll have to wake up for 5 minutes to do that). Hopefully when I wake up I will have digested everything that's been sitting in my stomach all day.
The homeowners association meeting was completely stupid. Very few people even came and they spent time lying to us about how great they are. Then this afternoon I got pictures of my neighbor once again taking her dog out without a leash, so I emailed that to the association and the city. She should be fined by both. Then at 1130pm that same neighbor's 30 something son (they live together, just the 2 of them... yes those disgusting thoughts you might be having are probably true) was dropped off by a couple buddies, and he and at least the passenger in the car were absolutely beyond trashed. They were yelling and screaming, trying to break into his car, pounding on the garage door, hugging and rubbing each other, and then when the car tried to drive away he jumped on the hood of the car before getting off and spinning in circles and dancing. I called 911 to give the license plate and information because with as trashed as those two were there's a chance the driver was impaired as well. At first I thought they were just breaking into the car, but as I was talking to the dispatcher I relayed all that was happening and when he tried to get into the house (but couldn't figure out how to use the door handle) and had the door opened from inside I realized it was him. Honestly I have the worst neighbors.
Well, I can't handle this stomachache and headache any more. I have to lay down and get this food to start digesting before my belly bursts. Let's hope I can spend most of the day tomorrow laying down!
Friday, September 09, 2011
One huge annoyance: seeing food that makes me want food and knowing I can't have it. There are plenty of times when I say I just want to eat a normal meal no matter how much it hurts me, but I know it's a horrible idea. I was watching the Supernatural episode Swap Meat and Dean orders a bacon cheeseburger "and fry an egg on top of it". I could almost taste the bacon and the cheese and the grease... it totally made me want it! Of course eating it would mean I'd probably not eat anything else for a week because it would be stuck in my stomach and intestines for at least that long. Though sometimes, just for a few minutes, it seems worth it.
Earlier this week when my Mayo appointment got set up, I sat down with my boss and told her a little bit about my condition. Of course, she seemed like she didn't believe me. I got the typical "I've never even heard of that" with the cocked eyebrow. Well today she ordered jimmy johns and had to show me the huge amount of onions they put on there. I don't like onions yet I couldn't stop staring at her sandwich. She even offered me half, but I've been on mostly liquids, smoothies, and yogurt for half of each of the past 3 weeks, so there's no way I could've. I showed her the bottle of Ensure I had had for lunch.
After all of these temptations today, I couldn't help myself and I gave in. My stomach didn't want much for food all day until I saw that freaking bacon cheeseburger in Dean's hands. I ended up having 3 cheesecake middles cookies and a cup of chex mix and a few other things that are okay only when my stomach is at least halfway working. It was too much for my stomach but I'm so sick of feeling empty and knowing I can't get full without making things worse. So now my whole abdomen is cramping in pain, my back and neck are in throbbing pain, and my head feels like there's a campfire in my skull and someone is throwing in full beer cans to explode them. My entire body now hates me and I just want to collapse.
As for my blog yesterday, I know I need to go to Mayo. I really hope they don't throw me out the door or shut me up with psychotropic drugs, though I am really afraid they will. I can't keep going like this, yet if they can't or won't help me I'm out of options. I'm really trying to hold on right now, but honestly it is incredibly difficult being positive or hopeful when you can't eat!
I have a pathetic homeowners association meeting tomorrow morning that I absolutely don't want to go to. Last year I was in the hospital when they held the meeting and now with the way I feel I don't know that I want to go listen to that absolute bullcrap. grrrr
So I'm going to go take the meds that knock me out cold for 12 hours and see if I can be awake in time to get to the meeting. *headdesk*
Thursday, September 08, 2011
Apparently my Endo doesn't want me putting things off any longer. His office called Mayo Clinic and set up an appointment for me. Luckily, I didn't have to reschedule because I'll be able to take off work that day. Here's the plan:
Tues, Oct 18th I'm making the 3 hour round trip to Mayo for a 45-60 min consult with the GI team. I have to gather as many medical records as I can (this is going to be difficult!) and hand-carry them to the appointment. I think I might need to take a shopping cart to carry all that. At that time, they'll decide what tests they would like to run and schedule it over as many days as needed the following week. If they choose only a few, I might be there one day - but if they choose many tests I could be there the whole week. Considering the absolute mess my body is (well beyond just the digestive tract problems), I'm thinking it may be the whole week involving several specialties. The good thing is by doing it this way, I won't have to 'play it by ear' and keep calling into work to tell them if I'll be there the next day or not. I should know after the appointment how many days I'll have to spend there the next week so we can try to plan for it at work.
Last night I had a freaky dream and woke up about 430-445 and absolutely couldn't fall back asleep. I just laid there tossing and turning, barely able to even close my eyes. After about an hour I just gave up and went upstairs to lay on the couch for about 10 minutes before starting to get ready for work. Of course, yet another night with little sleep means today started the 3rd flare in 3 weeks. I am so incredibly sick of this! I guess it's a good thing my Endo is making me go to Mayo, because this needs to figured out.
I'm a little disheartened that I called my sister and she seemed too busy to care much about this and my parents are on vacation so they're not really interested in hearing about it. Of course none of the so called 'friends' on facebook give a rats rear. Yes, there's a reason I hate the question 'what's your support system like?' because I don't have much of one. Pretty much it's all you awesome sparkers that are my support system.
Well, bed time. I've gotta attempt to get some sleep tonight.
Tuesday, September 06, 2011
The next time you go to the doctor for an illness or issue (not a healthy checkup), see how long your doctor allows you to talk about your symptoms before s/he interrupts you. On average it is 18 seconds before you're stopped and expected to listen instead of talk. Does your doctor examine your body besides the normal heart/lung check? There's a good possibility that answer is no. Many doctors have lost the ability to perform a thorough examination of the body and instead expect expensive and difficult tests to tell them what's wrong when they could've found it in a matter of minutes instead of hours or days. Who should be blamed: the doctor with a lack of empathy, the schools not teaching the doctors how to do anything but spout test results, insurance companies who stipulate patient time limits and minimum daily counts and expect multiple tests before any treatments can begin... or patients for allowing this? Maybe none, maybe all of the above. My point is: do we really get the best health care for our money?
I'm 30 years old, have received 7 diagnoses in the past year (and I know more are coming), and have probably had most of them for most or all of my life. Several of these conditions can easily be fatal, but they were overlooked for decades... why? I was telling my symptoms and my stories, but I wasn't being heard. I was researching my symptoms and trying to help point the doctors in a direction, but was told 'there is no way that'd be possible'. Was that true, NO! Today I feel validated.
I saw my Endocrinologist this afternoon. This doctor has actually listened to me, realized I'm smarter than people believe, and gets that I'm not a textbook case. He paid attention to what I brought up and put things together: he's thinking autonomic nervous system issue. Thing is, I've brought that up before and was told it wasn't possible for that to be a problem! This accounts for issues with severe adrenaline spikes, possibly my digestive issues, problems with heart rate and breathing problems, how I have both reactive hypoglycemia AND type II diabetes at the same time, how my hands and feet can be ice cold while my chest and rear are dripping with sweat, etc etc etc! Of course, this is still suspicion at this point, as the tests need to be performed to back it up. I mentioned to him I was considering heading to the motility clinic at Mayo and he said he greatly supports that idea and is sending down a referral to get me in there. He said since this has been going on for years it probably won't matter if I wait a few weeks or months to go (since it's so difficult to get off work), but there I will be able to get people from many specialties all looking at my issues together, because many seem to fit together.
So, should I celebrate the fact that I was smarter than the moron doctors who have belittled me and thrown me away for years, or should I cry that if this is an autonomic nervous system issue that it could mean something as bad as a brain stem tumor or an immune system issue that my body is attacking my brain cells. Well, I left my Endo's office and started belly laughing! I mean I actually choked up a few times because I was laughing too hard to breathe. I have months and years ahead to cry when they figure it out, but I can only bask in how smart I am for a short time.
I feel like hell. I don't really know what to do. I feel totally lost and I don't know what kind of future I can have. But at this moment I know I am smart. I lost a TON of brain power and thinking ability last year when I had to give up eating for a month and I've been fighting to get some of it back. This shows I didn't lose everything and there's a chance I could get back the rest of my smarts at some point. Of course, that means getting my body figured out and somehow made better so I can be around long enough to get my brain back to what it was.
For anyone who is interested in learn how to be a better patient and help your doctor to be a better doctor, here are some books to read (they're easy reads): How Doctors Think by Jerome Groopman and Every Patient Tells a Story by Lisa Sanders. Maybe you can help keep yourself healthy instead of ending up like I have.
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