Hello again, all. I hope this finds you all well!
In a blog like this, one that follows my medical progress, I don't find it necessary to continuously post when nothing exciting is happening. But, since I do have so much experience with the medical aspect of the disease, I should contribute when I can.
I recently had a string of blood tests done to check in on my overall health. Knock on wood, unlike a few months ago, I do not have constant stomach pain which might just mean the "MS hug hell" that I was experiencing daily might be finally subsiding. I know a surgeon just couldn't WAIT to rip out my gall bladder for being a few points below par, but as there were no gallstones, I didn't understand why he would want to remove it. He said there is no cure or treatment for the problem that he found - but if that really were true, why did a small diet change make such a big difference?
Hmm, my brain tells me, hmm indeed!
The blood tests showed that my cholesterol was absolutely through the ROOF and my iron was through the FLOOR. Aye-yay-yay. Tons of fun. I believe that my cholesterol shot up with my anti-depressant; my doctor told me that hyperlipidemia only occurs in about 1% of people - I wanted to tell her, "Come on, lady, I have a disease only 2.5 million people worldwide have, and you think I'm concerned about your measly statistical 1%? Clearly with my activity level, body type, genetics and diet I should not have a cholesterol reading of 244!"
The point I'm making is: I wish my doctors were worried about my symptoms like I was. When Kaiser kicks back a test result to my email address and I check it, and it clearly is shown as an abnormal finding, why don't you address that with me? Why not tell me why you are NOT concerned about it, for the love of Pete? I don't know if my doctor knows that I can see all those results before she does, but it makes me crazy.
As a medical provider, I do whatever I can to relieve my patient's concerns by expressing to them everything I am looking at and why, so if I find something abnormal, I can tell them why it might be worth looking out for or worth ignoring. I am a firm believer that people are in charge of their OWN health care - and therefore have to be informed enough to know what's going on where. I met someone recently who has had symptoms of chronic Lyme Disease for almost 20 years (and yes, it does exist, morons out there who think it doesn't) and never understood why everything sounded crazy loud all of a sudden. No one even bothered trying to explain what the disease might do to her over time and why.
I mean, I know I can call my neurologist for answers if I really get scared, but doctors are not omnipotent. Really, they aren't. Every doctor is different. You know what they call the last guy in the class in graduate school? Doctor. Idiots can get through credentialing, too. I feel like I shouldn't have to pull teeth to get answers and comfort. My PA at the neurologist's office as well as the head nurse gave me so much more than the doctor ever did - it's ludicrous how hard it can be to understand our own conditions.
The truth is, the future of MS scares the pants off me. I don't know what to expect when I wake up in the morning. Am I going to be dizzy today? Am I going to be able to taste? Will I be able to feel all my appendages, or will the third toe on my left foot be numb again today? Hard to say, because it changes all the time.
I know that it is as likely as not that I will never have a major flare again. It's a great dream. But I also know that my luck is just not that good when it comes to my health (bummer!) and I often learn things through my own health experiences that allow me to understand and be a more empathetic person in general. It is my own form of service.
With that in mind, I am going to post a great video about service - and a woman who has had MS for some time and how she relies on those around her to do the simple task of getting her in bed every night.
https://www.lds.org/media-library/video/2015-05-003-lift?lang=eng
Love to all -
