Wednesday, October 19, 2011
One of my major fears when I go to the doctor is that they won't believe me and won't help me. I've been ignored so many times that in some ways it's almost shocking I've survived (like a massive infection in my cheekbone for over 3 months - finally the dentist helped me after several doctors ignored it). Thus yesterday I was terrified that the doctors at Mayo would do the same thing. Sure they SHOULD listen and help me. Of course, since it was me, something was going to go wrong.
I'm going to start at the beginning. Monday night I was up and down for several hours and at 530 am (I normally am up at 6 for work) I was unable to fall back asleep. I had planned to sleep until 7 so I could have about 3 1/2 hours until I had to be on the road. So there I am, laying on the couch watching tv, trying to ignore the fear clawing at the back of my brain. About 630 I got up and started getting ready and was in the shower about 8. Sometime after 8 I was supposed to pick up a letter from my Endocrinologist to take to Mayo - I had given him a week and a half to write it. I got there at 915 and was told it wasn't ready and I should wait. At 930 I asked how long it would be because I had less than an hour to get on the road and I still had to get everything together - I was told it would be 4 or 5 minutes. At 945 I said forget it I can't wait any longer and walked out. (And this was one doctor I thought was trying to help me...) So my day was already sucking and I was fighting to keep the rising panic in check. I raced home, got everything together and into the car, said bye to my kitty, and was on the road at 1045. It was raining out and very dark, it was an unfamiliar and rough road (even though it's an intrastate), and I was fighting to be calm. The drive was sucky (especially the road construction guy who was spraying stuff into my lane right as I was driving past him so I nearly had to go off the road to avoid it) but I got there about 1230.
By the time I got parked, gathered everything, and walked-walked-walked-walked to get to where I had to be (they should have moving sidewalks in there!) it was about 1245 which is when I was due to check in. Unfortunately the check in line was moving very slow and I was about 10th back. By 110 the line had only gone down about 2 or 3 people and my appointment was supposed to be at 115. They called out my name so I went out of line and they said because they were so backed up they'd check me in back in the room. The appointment was supposed to be 45-60 minutes but lasted closer to 2 hours. I saw 2 doctors, the first I guess you could call an understudy for the second (I think it's a fellowship or something?). The first doctor came in and made most of my fears come true. I was very close to giving up and leaving. What did he say? He told me that I can't have gastroparesis because the test that was used to diagnose it was a bad test that only lasted an hour and extrapolated - it was actually a 2 hour test but he got pissed that I tried to correct him and refused to believe that I could know how long I laid under a machine without moving. Thus, since he doesn't like that test, he knew there's no way I could possibly have motility issues. ARE YOU FREAKING KIDDING ME?!?!?! So he thinks I just spent the last year making myself believe I have this condition because they gave me the wrong test. Then he proceeded to ignore the majority of my symptoms and issues and picked just a handful to show what he knows is the problem (it seemed like he diagnosed this based on my age and that I haven't been pregnant because 'we usually see this problem in women your age who haven't had kids').
*WARNING* The following could be TMI if you can't handle information about the digestive tract. Skip this paragraph if you want.
So what is wrong with me according to him? The muscle that controls my rectum and starts/stops a bowel movement isn't working so my stool is inconsistent. That is the ONLY thing wrong. The rest is apparently psychological. So he's going to give me a test to prove the muscle isn't working and he's not going to retest me for gastroparesis because I couldn't possibly have it.
Basically, he read my records and the bull that doctors have said about me, ignored my symptom list, and said the only thing wrong is something that is the least of my problems! When he left I was fighting tears, more rising panic, and I was thankful I had stuck to a minimal liquid diet all morning otherwise I would've been throwing up. I actually considered walking out, but I picked up my book and tried to focus on that (which was completely impossible). I'm desperate for help and if I left I'd never have any chance to get it. Finally the other doctor came in and she made me feel better in just a matter of minutes. She listened, she understood, she didn't talk over me, she didn't give me the 'you're a moron' look when I said something that didn't make sense to her. I said flat out to both that I'm a weird case, I've tracked EVERYTHING for a year so I can show cause and effect, and that if they proved me wrong I'd believe them (which means first they have to test me for PROOF!). She told me they were going to not only redo the gastroparesis test in the preferred way (which includes 2 different tests) and run the test the other doctor is insisting on, but she also has me going to endocrinology, neurology, and psychology (to see if they have any ideas to help me deal with all this better, since my therapist seems to be running out of treatment ideas). Then I waited about a half hour in the waiting room while they created my schedule for next week. I finished the trip by checking out several hotels and setting up my rooms. I was home about 745.
So next week is going to be busy. I'll have to be down there Sunday night for a very early appointment on Monday (which I have to prep for, so no way I can drive down in the morning). I'll stay down there Monday night also for more appointments Tuesday. After a late afternoon appointment I'll head back home for two nights (I'll save some money and I can leave my cat at home instead of taking him with me). I'll go back very early on Thursday, stay overnight, then I have one last early appointment on Friday, maybe take a nap at the hotel before checking out, then head home. It will be quite a bit of driving, running around, and stress, but it'll be easier on me in the long run. I'm not going to work on Wednesday (in case anyone is wondering) because I'll need a relax day as long as I can have it. If anything goes wrong and I can't make it back home, I asked my father if he would come up and take care of my cat. I really don't want that to have to happen, but it's a backup plan.
So that's what happened yesterday. It was a very tough day psychologically and physically. My worst fears came true but were turned around somewhat.
Lastly, I didn't get to show off my Singer Salvage shirt much (I tend to be very cold all the time, so it was covered by a sweater and often a jacket too) but after a lot of walking when I was waiting in line I took off my sweater. I was talking to the guy in front of me and he asked about the shirt. I had to explain it wasn't a real place because it's in my favorite tv show, but it was kinda fun to be able to show it off. haha
Tuesday, October 18, 2011
This shirt arrived last week and I'm glad it did. I'm hoping wearing it today will help give me strength.
To those who don't know what Singer Salvage is, it's from my favorite tv show Supernatural. It was (until it burned down a few episodes back) a bit of a sanctuary for hunters of monsters and other evils.
Add: This is the graphic. riptapparel.com/ript/wp-content/uplo
Monday, October 17, 2011
Well, tomorrow is the day. In just over 12 hours I'll be on the road to Mayo. I think I'm feeling numb, but that could be the severe lack of sleep last night.
I know I'm missing things, I know there's more I could've put together to take, I know there's going to be something I wish I had thought of. But it's too late now. I'm armed with a lot of stuff though, including my symptom list that is up to 45 now. This is the best I can do for them.
What are my expectations? I really don't have any. I'm trying to be hopeful but getting my hopes up pretty much will guarantee disaster. I just want to get this consult over, get to the testing, and get some kind of treatment.
Somehow I have to figure out how to get some sleep tonight and hold myself together tomorrow. Every bit of strength I have in me will have to come out to make it through tomorrow and next week.
I've said it before and I'll say it again - you, my sparkfriends, are my greatest support. I couldn't get through this without all of you. No matter what happens, I hope all of you know I deeply appreciate that you care.
Sunday, October 16, 2011
I went and saw The Thing today (all because of Eric Christian Olsen) and was disappointed. It was lame. Someone needs to tell the director and producers that incredibly loud sound doesn't make something scary! I had to put my fingers in my ears a few times because it was so ridiculously loud - yet I was laughing because those scenes weren't that scary! Some of the effects were kinda cool, but most were overdone. The writing could've been better, some of the lines were pathetic, the plot needed revisions, and you don't give someone an identifying feature over everyone else then kill them off with a half hour left! It wasn't really worth the $7.50 weekend matinee ticket cost, even with ECO (the character development was lacking and his screaming didn't work for a horror movie - he's better in comedy or a bit of drama).
Today wasn't a good day either. 11 hours of sleep last night should've helped, but it really didn't. My body is screaming that it's starving but I think my stomach and intestines are actually cussing at me - they don't want ANYTHING. Even many of my go-to foods are not being appreciated. I'm craving everything fried, greasy, and melty, but I can't have any of it. Just 3 more days - I have to hang in there! Right now I'm thankful for my DVR so I can avoid as many commercials as possible because food commercials might just do me in.
To my Dean - your support is holding me up right now. I can't thank you enough for that.
Friday, October 14, 2011
I got a massage tonight. This time it wasn't an attempt to make my digestive system start working again, it was just to try to get some of the poison out of my muscles that's built up from this past week of having my intestines not working (food rotting inside body, intestines absorb the rotting material which acts like poison). When I was standing at the front desk talking to the ladies I could totally feel the poison moving around (you totally don't want to know how that felt!) so I hung around a bit until I felt better. I got home, made my 'I can't eat solid food' smoothie, and couldn't get it all down before my stomach started rejecting it. I held it down as I started craving almost every single food I can no longer have all at the same time. I AM SO HUNGRY! But when I can't even get down the most basic version of my smoothie I'm in desperate trouble. So I'm finishing off the night with several cups of hot chicken broth. I'm seriously freezing cold (yes I have the heat on) and needed the internal warmth, but I won't be able to get down soup, so broth will have to do.
In a way it's a good thing I'm this bad right now, as I only have a few more days until my initial Mayo appointment. Walking in there and saying how bad I am right now should be good for my case, yet if I get worse I'm not sure how I'm going to make the drive. Plus when it gets this bad, the pain throughout my body just gets so difficult to bear.
I am fighting and will continue to fight. I have no choice, right? I will fight this condition and fight to find someone who is willing and able to help me. I just want to be able to eat food again without pain, problems, and malnutrition!
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