Wednesday, December 07, 2011
The gastric emptying study was today. Since this is my 3rd, I think I have an idea of what's going on when looking at the pictures (not that I'm sure I'm right) but after 3 hours it looked like everything was sitting at the bottom of my stomach but not moved through it. Then about a half hour later I felt a bit of a tearing/pushing pain and at the 4 hour picture it looked like some pushed through. So with luck, it will show that it wasn't normal.
In the waiting rooms there are signs all over saying food and water are not allowed. Some woman decided that didn't include her and she was right in front of me eating something that looked like cheetos. The nausea hit so hard my head spin and I nearly threw up. I asked her to take it out of the room since it wasn't allowed in there, it was making me sick, and thus it was going to throw off my test. She got angry! Seriously woman, the rules apply to you too! After glaring at me for a half hour she stormed out, probably to eat, then came back and sat in the corner pouting/fuming.
Very long day ahead tomorrow. I have 4 tests I have to do tomorrow (one of which is just a line being placed down my throat for a 24 hour pH test, and will be taken out on Friday). One of them looks to be a type of endoscopy which means I'll be sedated for it. So it will be a tough and exhausting day. Then Friday I get my results and hopefully treatment options. Right now, it's time for bed!
Monday, December 05, 2011
I'm horribly exhausted from today. The initial appointment went well. But after having 8 tubes of blood drawn I was incredibly weak. We got back to the hotel and I dozed a bit. I had to force myself to get up and walk around the halls a little to try to be awake enough that I could make myself have some ensure and water for dinner.
Tests start tomorrow. I'm glad my dad is with me because there is absolutely no way I could've done this alone! My body keeps wanting to give out and I'm at a point where even when I'm fighting it's too hard.
Sunday, December 04, 2011
The past few days have continued to get more and more crazy. There is so much I could tell all of you, but I'm quite exhausted. Instead, here's a quick run-down.
I put in 44 hours of work M-F this week. My boss got upset about her computer not working and I got it taken out on me. Saturday I worked 6.5 hours (had things that needed to be done next week) so that puts me to 50.5 hours worked in 6 days. As I left work yesterday, it was snowing and it ended up being about 4". Still, my mother went with me (too worried to let me go alone) to see Immortals. (TVD fans I posted about it in the team forums.) Luckily, since it is MN, the snow was easily cleared so my flight this morning had no delay. With what it took for me to get from home to the hotel in Philly, it would've been a nightmare if I hadn't had some really nice people helping me out. If a few people hadn't given me a little extra help, I'm not sure how I would've made it - I'm incredibly exhausted as it is. If I have time and energy tomorrow maybe I'll talk about all the nice things people did for me today.
So tomorrow is my first appt with the doctor at Temple. I'm a little nervous, but maybe I found my way to Temple for a reason.
Wednesday, November 30, 2011
When I was in the hospital last week, I was told I would get a call to schedule an appointment with a liver specialist. I haven't gotten the call. Yesterday I called to try to get it set up and about 1245 I was told 'you'll get a call soon'. At 1130 today I still hadn't gotten a call so I called again. Apparently there is no one on staff who can schedule for the liver specialists! I just kept being put on hold and/or being transferred. Finally I sent an email to scheduling and I got a nasty phone call saying that I just have to keep waiting because she's too busy to schedule anything but she can transfer me to someone else who might be able to talk to me sooner... and I was put on hold yet again! Seriously, is there a doctor in MN who thinks being underweight (by BMI and in looks), being in horrible pain, and feeling like I'm digesting knives when eating or drinking anything (including water) is something that needs to be dealt with in less than 6 months?!?!
My co-leader on the Living with Gastroparesis sparkteam went to Temple University Hospital in Philadelphia and was treated with respect - in addition to receiving treatments. Thus, I thought I'd call and get an appointment at Temple just in case these doctors in MN are going to keep being moronic. Well even better happened. About two minutes into my story the general scheduler was already so concerned that she gave me the direct phone number to the GI special scheduler (who has the authority to get someone in immediately). I called this woman and she was great. She got me the full set of motility tests for next week (5th to 9th). That's the only opening before next year. Since my company is getting new insurance starting 1/1/12, I needed to take this - even though the appointment here in MN was for the 7th. They completely took me seriously - something I have yet to see here in MN.
So I called to cancel the appointment here in MN and tell them to not even worry about the liver specialist anymore. I got the phone number for records so I could get the test results from last week and was chewed out by yet another incredibly rude woman! Seriously, "Minnesota nice" is a bold faced LIE! Not sure I'm going to have the records in time, but I'm trying anyways.
I talked to my parents right away and my father will fly there with me, while my mother stays behind to take care of my cat. They've already scheduled a hotel about 3 miles away from the hospital, have looked into rental cars (they won't schedule until we know if we're coming back Sat or Sun), and called Delta to ask about getting a fare discount due to a medical urgency. It will be about half price but it has to be scheduled no more than 3 days in advance and might have to stay a Saturday (hence the question for the car rental). My father also called the TSA and was told I can take 3 bottles of ensure on the plane (after being declared and checked of course) because it's a medical necessity. Also working on finding out about making sure a wheelchair and/or baggage carrier is available since I'm having a very hard time walking (because of pain and lack of nutrition) and tire out easily. Looking into a few other ways they might be able to make the flight easier, but this is a start. Also we plan on only taking 1 carry on each (we can wash clothes if we have to) and my laptop. Then we don't have to worry about lost luggage or baggage fees.
Work isn't happy I'm sure - I don't think I'll have enough leave for the week. But since I just got my yearly review and it was good, plus my boss today saw me struggling and clearly in pain and said I really did not look well - so hopefully they'll be forgiving. I definitely have to have a doctor's note this time though. But still, I work in accounts payable (I pay bills) and most of my payments are due in the first 15 days of the month so that will suck. I'll do what I can, but this is my shot to finally get help - I have to put myself before my job for once!
Today has been a very emotional and whirlwind type of day. (Oh and I finally got my car back and it seems to be okay now... just in time to leave the state for a week!)
Get An Email Alert Each Time 1STATEOFDENIAL Posts