Tuesday, April 30, 2013

Compliance

Through the years my GI specialist has come to know me extremely well. She knows when I tell her I'm not doing something, I mean it. She knows when I'm not being completely compliant like I should and she even knows some of my tricks sometimes. She knows my limits and she knows not to push me further than what I can handle physically and emotionally. She knows how to advocate for me, she knows my mistrust and paranoia, and how to ensure my safety, comfort and well being. She knows my coping regiment and she knows how I best respond to care. She knows me.

I've told her I'm not allowing any rectal exams without sedation nor will I take any laxatives, enemas, or suppositories for a colonoscopy or endoscopy. Hence, why I haven't had either exam since 2007. She's brought up having another scope done since 2007, and I have agreed to undergo another scope if I can fast, and only fast, for the scope. But I also know that if I don't remind her to schedule the scope, I won't have to mess with it at all.  Yes, this could prove a grievous error on my part. I was advised I'd have stomach cancer by age 30 - in 2 more years. But that was 2 or more scopes ago and my last scope there weren't any polyps of any kind found that time. I don't know what I'd do if I had cancer that couldn't be treated by surgery. I don't know if I would consent to chemo or radiation. My grandfather had radiation and it shattered the rest of his intestines. Yes, that was back in the 1980's so a lot has improved since then. Yet, I can't forget the complications my grandfather suffered. I don't know if I could withstand the physical and emotional toil that accompanies chemo or radiation. I just don't know. But I do know, that I'm not worried about it.
I did have a CT scan with dye in 2011 that didn't show anything remarkable, so I know at least at that time I didn't have any large polyps or tumors. I did discover that my kidneys are connected in the back instead of the front, as they're supposed to be. I don't know why there is always something abnormal about my kidney design. My right kidney is small and in front of the pelvis instead of behind the pelvis, so it's not protected.

I've stopped medications, such as Sulindac and Celebrex, simply because I got tired of taking them. I am faithful in my Lomotil and my Iron though. After not taking Sulindac and Celebrex for so many years, when I finally felt guilty and asked if I should start taking them, my doctor must have known better because she told me not to worry about them!

I've been horrible about taking my B12 regularly since I got married. I usually miss 2 months and do great the 3rd month - before my regular GI appointments. Then I dose up quickly on my B12 to make it look good. This month she caught on though, she questioned the date of B12 and the date of lab. She just smiled her knowing smile at me and suggested I take my B12 regularly. Which I've been dong better at. This month I haven't missed my series at all. I also got new syringes - insulin syringes - and boy do they make a difference! They're much easier for me to sit through and much easier for my husband to use.
Yet, I feel more tired this month than I have in several months of not taking my B12 regularly. Every day I end up taking an involuntary nap - sometimes multiple! In discussion with other FAPers, I've noticed that some also have trouble with Vitamin D and even their Thyroid that makes them fatigued. If this continues, I plan to ask my doctor about these as well.

Then sometimes you're compliant and a doctor labels you as non-compliant. For instance, my GI doctor wants me to have a 2nd bone density scan. My first bone density scan was in high school  so well over 10 years ago. I agreed to go for the scan again, I've even called to remind my doctor's office about it. However, the bone density doctor has me labeled as non-compliant for supposedly cancelling an appointment and not rescheduled in 2010. Two things beg the question here.
1. Why would I have a random, sudden appointment scheduled at minimum 7 years later without my GI doctor or myself knowing about it?  I never had a follow up appointment with this doctor after the bone scan. My GI doctor reviewed the results with me beyond any that were given at the time of the scan. Why would I need a follow up appointment 7 years later and not more regularly in between?
2. Why would I recognize the doctor's name after 7 years when I had been to the doctor one time? I know the names of my past doctors and I even know the names of a couple doctors who regularly consulted with my GI. I do not remember the names of doctors I met one time. 
And yet, this doctor won't see me again in spite of the unraveling of her office's excuses. I actually take offense to this. My doctor is amazing and obviously finds reason to keep me as her patient when I should have transferred to an adult GI 10 years ago. When I am forced to transfer, my doctor already has information prepared for my future adult GI as to how to care for me and how to respect my limits due to my past trauma. Even the adult GI, who I plan to transfer to when so forced, asks my GI doctor about me regularly in preparation of taking over my care.

So sometimes, even when you're compliant, someone or something will attempt to make it appear otherwise. In such cases, it's a great thing to have a strong doctor advocating for you. And if you don't have such a doctor, I highly recommend finding someone else. I've been there with a negligent, uncaring doctor and I paid for it. When you find that strong doctor, who knows you, your body, strengths and limits, so well - hang on to them for dear life. There are a great many of doctors like that I've found.

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