Autoimmune #Peripheral Neuropathy Syndrome, #CMT and #Crohn's disease?

 I just want to write. 

I do not want polyneuropathy, autoimmune or CMT. But it seems like I have no choice but to live with them all. And so I  shall make lemonade. Neuropathy like Crohn's disease is life long. However in cases like mine that have attacked the cardiovascular system, the prognosis isn't great but it isn't the end of the world, today at least. However experiencing fainting, being out of breath, and wacky heart rates beats the hell out of neuropathy pain that I hear can cause excruciating agony. Most people with cardiovascular neuropathy experience chest pain. I don't and for that, I am grateful. But it is also because of that, that most physicians missed the diagnosis. Could anything have been done earlier? Nah. What is meant to be will be. 

My current symptoms are: 

Hoarseness--my Vagus nerve's slow demise has affected my vocal cords
My heart rate: which is too fast at the moment, but the doc stays will eventually go too slow
Breathing: I get out of breath a lot, but not as much if all the meds are working the right way
Exhaustion: My body defines the term
Blood pressure: I have to take meds to keep it up then meds to keep it down. It makes no sense. 
Emotionally: I go through ups and downs. If I am around people I laugh and joke and have fun. When I am alone, the thoughts creep in. I try not to give them too much energy but sometimes, they overwhelm me. 

Thank you to my doctor at Stanford who pulled out all the stops to find out what was wrong with me. I've never seen such a look of intense concentration as he put me through the ringer. He respectfully asked me to remain standing when everything in my body just wanted to lay down. At the end of the test, he showed me how often my cardiovascular system struggled to remain upright. I was completely unable to maintain a normal heart variability for longer than a few minutes and it completely tanked when I tried to take a deep breath.  

It all began with a Crohn's flare last October. I wasn't feeling well when I went in for my annual exam. I told my NP and she checked my blood pressure which was 100/65, a bit low, but doable with a nice heart beat of 80 on Atenolol, my BP medicine of choice.  She asked me to track my BP which I did and I noticed it was always very low in the morning. I ignored the BP when Crohn's took a nose dive in November. I was put on Prednisone for Crohn's disease and within days I began to sweat. I had stopped sweating years ago and when I mentioned it, no one seemed concerned, so I chalked it up to another weird symptom of Crohn's disease. 

Now, when I say I began to sweat, what I mean to say is that I began a river of sweat that blinded me on many occasions. I didn't even have to be hot. Upon exertion, sweat poured from forehead. I wasn't sure if I was happy or sad that my sweat glands were normalizing.

When I was hospitalized in December, the doctors and nurses had a great time getting me to lay down, sit up, then stand all the while taking my blood pressure. They said I had Orthostatic intolerance which meant nothing to me and no one seemed particularly concerned so I ignored it and moved on.  They didn't much concern themselves with my sweating either, but then Crohn's was more important.

In February, I was back in the hospital because my BP was inappropriately low and my heart rate was dancing along at at nice 158 BPM.  Everyone, including myself, decided it was an adrenaline problem because I had been on steroids for so long. Shortly after, they told me I had adrenal insufficiency that, if I didn't take the right medications, could kill me. This was a disease I'd have the rest of my life. 

I was handed off to an endocrinologist who confirmed my situation through a variety of tests. Unfortunately, my unstable blood pressure and heart rate soon reappeared. My endo decided maybe I didn't have Addison's disease, that maybe it was something else. I was put on high doses of steroids then handed off to a cardiologist. 

After a ton of testing it was decided that I had POTS which means your blood pressure and heart rate are inordinately influenced by standing, which is very simplistic for a disabling disorder. Then he decided I had complete Orthostatic Intolerance which means my body didn't like to stand. When he was completely confused, he send me to Standford where it was hoped that experts in the field of autonomic disorders would find my affliction. 

Which they did. 

My family is full of hammertoes and high arches which are hallmarks for CMT but I also had a myriad of autoimmune conditions that could also influence my autonomic nervous system.  After a ton of testing, it was decided I had both. 

Since I do not have agonizing pain in my hands and feet, I count myself lucky. I do have pain, but it's more generalized. Yes, it can be crippling, but I refused to allow it to be so. There may come a time when the pain overwhelms me or my heart just can't take the stress anymore and that will be that. 

I asked the doc about exercise but he said recumbent only. That means laying down.  That doesn't work for me. So I walk, slowly, but I walk. I also take a ton of vitamins because Crohn's makes it difficult for me to digest the food that I do eat. I gave up the liquid diet and decided to go whole foods. I don't do sugar because it is inflammatory or breads or carbs with the exception of my one oatmeal cookie per night. I plan to take up hiking and I refuse to not do the things I enjoy.  Last Saturday I was on our boat watching the gkids tube. I had a shit eating grin on my face the entire time and I loved it.

I also refuse to believe the doctors. Only God knows when my time is done. I have more books to write and certainly one more to complete come hell or high water. And I have a gkid wedding to attend and another to see through high school. I want to go back to Hawaii and I want to try a cruise. A short one. The Noro virus scares me. I don't know why I have these challenges but I do and I will live my life the way I want, not as someone tells me to do. I'm not going to go crazy like picking up smoking again, or eating a half gallon of ice cream at one sitting, but I will do what I love, only I will do it slowly. Just like writing this blog. 

God Bless!