I haven’t really been open about my medical stuff lately for many reasons. Mostly because I don’t want anyone looking at me or treating me differently because of it. The next biggest reason is because its confusing; so confusing and involved that I can’t even be treated by the doctors up here for it, I have to be seen in Boston for it. However between the comment from my beautiful (right down to her soul) cousin Deanna and the way I’ve felt these last 24 hours, I’m going to share. Besides maybe this will reach someone else that lives with the same issues. Buckle up, it’s one hell of a ride!
Next month I’ll finally see the neurologist for the “official” diagnosis and a more comprehensive treatment plan for my dysautonomia. What the hell is that you ask? Well, that’s what I asked too lol! As shared on the Dysautonomia International website:
What is dysautonomia?
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. (Don’t panic, I’m not a severe case that will result in death!)
As you can see in this picture, this disorder can impact literally every system in my body. There are ways that we know for a fact it currently impacts my body, and there are other long term issues I’ve had that were probably caused by this. For those that are interested I’ll spell some of it out.
Currently I am being treated for inappropriate sinus tachycardia. My resting heart rate is 126 on average, when it should be around 65. I take medication to keep it around 65 because left untreated my body responds to a simple walk the way it used to respond to cycling uphill. This has been accompanied by several instances of severely low blood pressure. The heart meds seem to have corrected that as well thankfully.
The other big issue is my body temperature. I’ve always run a little cold (averaged around 97.8) but these past few months its been really low. Daytime average is around 96.3ish, but waking up I tend to be around 95°F. Sometimes those low temperatures make my mind foggy and make it hard for me to focus or really catch much of anything said to me. When I had my accident in December my temperature was so low it wouldn’t register on the oral thermometer in the hospital, but I was awake, alert, and coherent. Sore and cold as hell, but alert!
Because dysautonomia impacts the nerves, I don’t typically receive the warning signals you would get for being that cold. As an example, despite these low temperatures that are at times dangerously low, last night was the first time all winter that I’ve had goosebumps! I rarely shiver. I just turn purple and white, then get brain fog.
The warning signal issue is also a problem with my hypoglycemia. For at least the last 3 years I have not received the typical warning signals that my blood sugar is dropping until it’s down in the 50s, which again is dangerously low. That’s why I sip coffee all day- it’s a literal lifeline for me. As long as I have a constant flow of sugar, a little bit at a time, I don’t have to test my glucose 10 times a day and my glucose stays up around 100.
I also don’t tend to feel hungry often. Maybe once a day my body will remind me I need to eat. When I was crashing down into the mental hot mess I was a year and a half ago, it wasn’t uncommon for me to miss entire days of meals simply because I didn’t feel hungry, which I’m sure played into my instability at that time. And often when I do eat, a “normal” sized portion makes me feel overly full. Like Thanksgiving day meal full.
This disorder is also the cause of the tummy troubles that started at the end of 2010. It causes the nerves in my intestines to respond to food digesting by sending pain signals to my brain. Before I began proper treatment for controlling those nerve signals, the pain would at times be severe enough to literally render me unconscious. If theres one thing I’ve learned, it’s that the power of the body is incredible, both in what it can dish out as well as what it can take!
It particularly sucks on days like today. It’s freezing cold outside, so my body temperature is more of a struggle. I’m also sick, but I wasn’t sure I was because my “fever” is a temperature of 98.1. When I saw the goosebumps last night I suspected I may be in trouble though. Well, as soon as the amazement and giddiness faded away anyway.
Theres more, such as the headaches and such, but those are little things that pop up. Ultimately I’m lucky, or as lucky as one can be in this situation, because at this point my dysautonomia is Primary. That means that for whatever reason the nervous system has gone on the fritz. It’s not Secondary, because I’ve been fortunate enough to not have any autoimmune diseases that this is a side effect of. I think this is enough, I don’t need an autoimmune disorder too!
For those of you that have stuck with me this far, I genuinely appreciate your interest in what’s going on with me. I won’t ask you to try to understand any of it because it’s so confusing at times that I’m not always sure I understand it! All I ask is that you remember that I am still me, I’m the same person I’ve always been. Please don’t treat me any differently than you did before you knew all this. That fear of being treated more delicately is why I’ve handled this mostly alone and haven’t shared. I’m still strong. I’m still, and always will be, much stronger than I seem.
Now I think I’m going to go take a nap. Hey, I’m strong but I still have a stomach bug!!