I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Monday, June 25, 2018

Internal Medicine Clinic June 2018 (TMI warning)

I saw Dr. B on the 19th. The office failed to put me on the schedule in spite of giving me an appointment card, so I had to show that to be seen. I won't even get started on their issues. I'm grateful for whatever help I can get.

I had the usual blood work, and my potassium level was where it often is - 4.0. As has been the case for years, I remain in a weakened state in spite of normal potassium levels.

We mostly discussed my gastroparesis. I thankfully haven't been in the ER again since May, but still dealing with nausea as well as a lot of pain everywhere including my torso, lower abdomen, backside, bladder, and everything in between if you know what I mean. It all never stops hurting. My body is super irritated. He did check me for bladder infection, and it was negative.

I am also in tachycardia, and experiencing lightheadedness, shortness of breath, and a decline in equilibrium. I had one of these episodes upon entering my room, and they stopped what they were doing to recheck my blood pressure and heart rate. BP was perfect, as it usually is (Irbesartan is the real MVP), and heart rate was 124. Where my digestion is concerned, since ditching the high protein/fat diet, the majority of the paralysis appears to be in my colon at this point. I've learned that this is frequently referred to as Intestinal Motility Disorder. It is probably related to my Muscular Dystrophy, however, I question the possibility of Dysautonomia and POTS and it is something I hope to talk to someone about at some point. My heart rate goes up for no good reason. All I have to do is turn over in bed or get up out of a chair and my HR jumps. I've worn heart monitors several times that confirmed this, but I've never been diagnosed with POTS for some reason. POTS can cause Dysautonomia, and Dysautonomia can cause Gastroparesis. I know Periodic Paralysis patients who have Dysautonomia, so that's notable as well. Dr. B said he wanted to refer me to the local university hospital's gastroenterology department to discuss it further. I'm waiting on that referral now. He decided to give me samples of another medication, Trulance, to try to force my lower digestive tract to do its thing. And boy, is it. Far, far too much. I'm losing weight again in spite of eating, and as I've already mentioned, I'm in constant pain (I already deal with constant pain in my muscles, but this is a different kind of pain).

So now what? Dr. B said if the new medication is a problem, just switch back to the previous one, Linzess. That one, as I wrote in May, is also harsh on my digestive tract, but it's the lesser of the two evils, I think. I'll start back on that one tomorrow. Other than that, I have to take this one day at a time and wait for the referral.

Dr. B wants to see me again in a few weeks to check on me. His office frustrates me to no end with their frequent careless mistakes, but I could not ask for a better doctor. Imagine James Earl Jones with a funny, honest bedside manner. I've thanked him countless times for all the help he's been to me in spite of how difficult I am, and he always says he enjoys knowing me. Dr. B is dad goals, as the kids say these days. I think if more physicians treated their patients like friends, the overall morale of medical care in this country would change. Something to think about.