I should be sleeping - but obviously I am not. I need to get up early tomorrow to drive into the city for my follow appointment with my gastroenterologist.
I am more than a little nervous. This will be the first time I see him since I was in the hospital at the beginning of September. At this point there really haven't been any real improvements. My weight for the most part has been good - even though I've put on a few pounds from the lipids in my TPN treatment, it's better than losing weight at this point I guess. But I am still struggling each day when I eat - no matter what I eat.
I'll have to tell him that I stopped taking the Mestinon and why. It's not like he will yell or lecture me or anything - it's just that he doesn't know yet and I know it's going to add to his 'frustration' that my body isn't responding to anything he gives me. He's also going to need to prescribe me something different than Nexium - because I can't afford $100 a month for a single script.
I am nervous that he is going to pull the PICC line - even though my stomach isn't ready for that step. I am not sure why that is stuck in my head, but for some reason it is. I just keep hearing him say that he could remove it in the office - something he said while I was in the hospital. Realistically though there is a possibility that I may have to have it removed tomorrow for other reasons.
For the past few days I have been having discomfort in my shoulder and yesterday I could feel it a little in my chest. I am not sure if that is a sign that the PICC line is failing (or has an issue). So I will discuss it with the Home Nurse tomorrow - whom I am actually seeing down in the city after my gastroenterologist appointment. Who knows - it could just be that I cranked my shoulder or something from lugging that bag around.
I am also at that point in my treatment where I may need to start looking for another doctor - but that is going to be based upon how I feel after tomorrow's appointment. It's not that I need to change doctor's because mine is not exploring other treatment options. There are no other treatment options. I have tried them all - with the exception of the stomach pacemaker which I refuse to do. The change may need to be made based upon whether or not he is the right doctor to continue to manage my nutrition while we are waiting for other treatment options to become available.
I am sure it is frustrating as a physician to have your bag of tricks be empty. To have exhausted all of the options available to you to treat your patients symptoms when their condition currently has no cure. I get that. Cause trust me - it's frustrating as a patient to be in that position. It's frustrating to know that my body doesn't respond to treatments the way most people would - that I typically am one of those people that will have the adverse reactions to medications - it's just the way my body operates. And its not that I fault my doctor that there is nothing else that he can do for me - I know he is trying. So at this point - it's what are we doing to supplement my nutrition.
The clock is also ticking on the 60 days that my insurance will cover my TPN treatment - we are at the half way mark. Just something else which is constantly running through my head. What are we going to do in 30 days? I keep trying to tell myself we will cross that bridge when we get there. Ideally I would love a miracle for my stomach to start working again and then I wouldn't have to worry about any of this - how nice would that be.
And I am hoping that this appointment is at least a productive one - unlike my rheumatologist appointment last week that left me very frustrated. I really don't want to feel that way tomorrow.
Time to quiet down the thoughts in my head.
To close my eyes as I sink down into my pillow.
To slowly take a breath in and very slowly let it out.
Relaxing every muscle in my body.
To clear my mind of all thoughts.
To prepare myself for pleasant dreams.
Cause you know damn well that 5:30am alarm is gonna be here before I know it :)
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