I'm coming out with it all... I don't want to hide anymore.....before it got real bad at the end of 2010, the only people that knew I was disabled were my close friends. I hated showing it & if I was in a flare up I would stay away from people. My health makes me feel very vulnerable so I didn't want to share it with anyone I didn't know. When it started getting bad at the end of 2010 I had no idea what was going on. By March of 2011 I had to tell my friends. I had not seen anyone yet that year. I started opening up to them & am so grateful for their love & support. Over time I knew I needed to just be open about it. Its been hard because it makes some people very uncomfortable. I understand its a lot to hear about but if you want true discomfort, spend a few minutes in my body & you'll understand....
I have a severe genetic disorder called Ehlers-Danlos Syndrome (EDS). It gets worse as you get older cuz the bones, tissue & skin wear down more & more over time. Its a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen. The collagen in connective tissue helps tissues to resist deformation. In the skin, muscles, ligaments, blood vessels and visceral organs, collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure, and treatment is supportive, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Corrective surgery may help with the frequent injuries that may develop in certain types of EDS, although the condition means that extra caution is advised and special practices observed. There are 6 major types of Elhers-Danlos Syndrome. There are many symptoms depending on what variation someone has. I'll list some of the symptoms I have....
-Loose, unstable joints that are prone to: sprain, dislocation, subluxation and hyperextension
-Early onset of osteoarthritis
-Vulnerability to chest and sinus infections
-Low muscle tone and muscle weakness
-Problems with proprioception including dysmetria
-Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility
-Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
-Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
-Arterial/intestinal/uterine fragility or rupture
My spine started to deteriorate in my teens. I had to leave high school after 9th grade. I now have several herniated & bulging disks throughout the entirity of my spine, I also have scoliosis & my rib cage is twisting. I have had a neurostimulator implanted into my lower spine in 2009 to help control pain.
Video about the implant:
I have 3 scars on my back & one on my hip from the surgery. However, because my connectives tissues are so sensitive & I also have fibromyalgia, the machine inside me is causing discomfort & I'm going to see about getting it removed this year. I cannot live alone cuz I need help with things constantly. There is always someone here with me. I've never been able to drive. The older I get the worse it gets. I'm starting to become very nervous & scared at how limited I've become. While there are several variations of the 6 categories of EDS & we all have different combinations of symptoms, I thought I'd share this vid with you....
As I said, I also have Fibromyalgia. I have severe muscle pain every second of every day. I've lived with severe pain for almost 15 yrs but it started out mildly as a child. Before I was 14 I had a collection of casts from various breaks , sprains & dislocations. I will be 30 on Halloween this year. Also from the fibro my muscles sometimes feel lumpy, kinda like rope. I also have several spots all over my body called trigger points, that when pressed lightly, send sharp shooting pain in that area & it doesn't go away for a couple days. These trigger points flare up & cause severe pain in all that surrounds them, including organs.
Video on Fibromyalgia awareness:
I also have Myalgic Encephalomilitis & suffer from a fever 95% of the time. My brain is also affected. I have lost a lot of my memory, its very hard to make new memories (I struggle to keep up with things so set tons of alarms & write notes) & I have trouble with word placement sometimes. Before I became housebound & could go out every now & then, I would have a hard time meeting new people cuz I couldn't remember their name or answer questions about myself cuz I couldn't remember. It made me feel insecure. Its gotten a lot worse the last 2 yrs. I have been housebound since the very end of 2010. I only go out to see doctors or go to pharmacies. I try to go to the neighborhood super market with my mom every once in a while. I get so desperate to leave the house that I'll push just to go grocery shopping. Most often I regret going because by the time we get back I collapse & it can take a day to a week to recover depending on how I'm doing at the time & how much I've been pushing myself at the time. I have disabling fatigue that affects my breathing at times cuz sitting up is exhausting. It can take up to 3 hrs to do a regular makeup look for my channel. I have to stop in the middle of recording to take breaks several times. Sometimes I forget to hit record again which is extremely upsetting cuz I put blood sweat & tears into all I do. Why do I do it? I refuse to give up. I may have no choice but to give up all i love one day. I'll push until I can't anymore. Until then, I will gladly suffer to do things I enjoy. I've had to give up so much already....
I also have interstitial cystitis which is very painful. Google it if you'd like to know more. A lot of people become disabled just from that. Which reminds me, I forgot to mention that I've been on disability for 12 yrs. At 1st I could at least go out once in a while & have a social life. As I said, its gotten worse as I've gotten older & more diagnosis's have been piled on top. I've also developed Morton's Neuroma. Most get only one in one foot or one in each foot. I have 2 in each foot & its very painful to walk. I have to wear special orthodics in my sneakers. The bottom of my feet near my toes swell up, & I get lightening shocks in my toes & my toes are starting to twist in on themselves. Most who develop it get it from wearing heals for many years...the heals squeeze the nerves between the metatarsals, which eventually cause the nerves to swell, causing neuromas. I however could never where heals growing up cuz of my back & my ankles easily break & sprain, not to mention my legs pop out. Mine is caused from my various health conditions. Surgery is not an option in my case cuz it will just come back. I've had many injections between my toes to try & shrink them but because the surrounding tissue is so sensitive, they just get worse.
Video about neuroma:
So, last of the disabling diagnosis's....as if one wasn't enough! I also have a heart condition passed on from my mom. My mom had heart surgery called an ablasion when she was in her 30's. I will most likely have to have the same surgery. I started heart meds when I was in my teens. I have tachycardia & arrhythmia's. Without my medicine my resting heart rate is above 120 beats per minute. That is from the tachycardia. My heart started skipping when I was 24. My mom told me hers started in her mid 20's as well. they actually wrote about my mom's case in a medical journal cuz of the findings. Skipping heart beats is called arrhythmia. Its been really bad lately & I may need to have another heart monitor soon. When it skips it slows down for second & it feels like my breathe is being sucked out of me, then it does of series of skips & then returns to normal.
So, that's the gist of it all. Thank you to anyone that actually read all this. I'll be recording a vid about all this & show you what my life is like. Thanks to you all for your support!