Today is rare disease day. A rare disease affects fewer than 200,000 people in the US. Only 5% have treatment options. Most have no cure. I have/had several rare diseases: Severe Hyperemesis Gravidarum while pregnant, PH positive Acute Lymphoblastic Leukemia, Graft vs Host (rejection from transplant), Secondary Adrenal Insufficiency, Central Hypothyroidism, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome (which is technically not rare but few doctors have heard of this newly discovered disease). I am also one of the rare individuals who react to fats- even good ones like Omega 3 – by raising blood sugars. Yes, I have the worst genes ever.
I try to joke and play it off, but what having these rare diseases means is every day I wake up exhausted and with full body aches. Some days it is better, some much worse. I get random sharp stabbing pains like someone is jabbing me with a live wire. Muscle spasm/cramps, like charley horses, are almost a daily occurrence, but not limited to my legs. I swell random places and my eyelids will sometimes twitch all day which is so annoying.
Along with that daily pain and exhaustion, I have severe brain problems from chemo, stroke, and brain fog which can be from several of my rare diseases- no way to know for sure. My memory is so bad, I forget what I am saying as I am saying it or what I am doing as I am doing it. Words elude me, which as a writer is so frustrating. I can’t remember a movie or a book that I just saw/read last week and if I do I can’t remember the ending.
The POTS causes my blood pressure and heart rate to shoot super high and then drop low when I lay down. I will be asleep and it shoots up so high sometimes I jolt awake. I can hear my heart beat pounding in my ears and my body feels like electricity is running through it or like I am vibrating inside. I can’t take the pills to lower BP/HR because they cause mast cell reactions and also interfere with epinephrine so if I do have a reaction I could die of anaphylaxis. I learned this after starting Nadolol. I went to a mass for my aunt and the incense caused an allergic reaction. Then I had another one a few days later at the dentist from the alocaine.
Since my stroke, I have a continuous headache that sometimes gets really bad, other times it is just a low thrum. I have tinnitus and sometimes the ringing is so loud I can’t hear. My vision comes and goes. Sometimes at night I can only see shapes and am not able to discern detail so I can’t read. Sometimes my vision is fine. So I never know if I can drive somewhere until that day. Let’s not even talk about mood swings and days I want to just stay in bed and not take my meds and just finally die. Every day I feel like a burden to my family.
This is what it is like having a rare disease. I am pretty blessed because I have so much support from my family and friends, both in real life and online. I am so thankful for all of you. I see posts from other people in my different support groups who have no support at all and my heart breaks for them. I am also lucky to have even gotten diagnosed properly which is a huge battle people with rare diseases face. Most get sent to psychiatrists for depression or anxiety. I get by every day from the strength of my family and friends and other sufferers in my support groups.
Today, I post to raise awareness of rare diseases and to push for more research. Learn more here.