This is me. My name is Courtney. I'm 34. I enjoy photography, though I've not touched my camera in ages, video games, music, singing, reading and writing, and my dogs. I also love the beach, and am in GREAT need of a beach trip!
I don't have cancer. (Everyone asks)
I actually have Alopecia Universalis. Alopecia is an autoimmune disease that causes your body to attack your hair follicles. My immune system isn't good at much, but at attacking my body, fantastic! The universalis part means that I have lost all of the hair on my body. Luckily, I think I look cute and I don't have to shave! I do miss my brows and lashes, though!
Speaking of autoimmune diseases, I also have psoriasis and psoriatic arthritis. The good news is that now that I have alopecia universalis, I don't seem to be having psoriasis outbreaks anywhere that I have hair loss. The bad part is that it leaves mostly my hands and feet to be affected. Luckily the medicine (methotrexate, humira) I take to suppress my immune system controls psoriasis fairly well. It also helps slow the joint damage from the arthritis. Mostly affected so far are my spine, hips and fingers. I also have fibromyalgia,causing overall pain in my skin and muscles on a fairly regular basis. I don't reccommend this. 0/10. Avoid at all costs.
I am not currently diagnosed with, but meet all of the new diagnostic criteria for, Ehlers Danlos syndrome, hypermobility type. EDS is a genetic connective tissue disease that affects the way collagen is formed. Since collagen makes up basically your whole body, it can affect just about every body system, from joints that hyperextend, dislocate or subluxate, to veins that don't constrict properly, to skin that is fragile and a million other things. It leaves me with chronic joint pain even in the joints that aren't affected by arthritis. We think I inherited this from my dad, as he too has the symptoms.
Along with EDS comes a condition called Dysautonomia, or Autonomic Nervous System Dysfunction. My type of Dysautonomia is called Postural Orthostatic Tachycardia Syndrome. POTS causes a plethora of symptoms, the main one being tachycardia upon standing. It also causes things like low blood pressure, headaches, brain fog, dizziness, fainting, blood pooling and so. much. more. My POTS is complicated by Inappropriate Sinus Tachycardia. This means that my resting heart rate is higher than normal and my heart rate speeds up really fast with minimal effort. So it goes up when I stand, and then it goes up higher when I walk across the room. It goes up when I roll over in bed and do little things like that as well, just not to the same extent.
Finally, I have Bipolar Disorder. Sometimes I forget about this one because it is so well managed. I have been on the same combination of medication for about 7 years and I couldn't live without them. I am so thankful that this particular part of my health is in such a great place.
Even with all of my disabilities, I still love to live life. Mostly I live it from my home, but that's okay, the people I love are here!
Hi, I have missed seeing you and comparing symptoms :-) I, too, have hypermobility and wouldn't be surprised to have EDS and I have POTS that sounds just like yours. I will see another specialist for the dizziness and fast heart beat soon. I'm glad you continue to make known how things affect you. There are always a few things that seem too weird to tell just anyone :-) I'm sorry you have so much to deal with, but for someone that is bi-polar, you sound so upbeat. Living mostly from home too so I know what that is like. E-mail or msg me if it ever becomes too overwhelming. Love you! Peggy F
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