My Medical Me

Major

*hEDS- faulty collagen, born with it. it's affected me all my life, but after having kids, since about 30 years old, my health has taken a nose dive. having more problems with joints coming in and out, subluxing ribs, hips, fingers, jaw

*HFA- autistic- childish, make the wrong calls, problems with communication, i don't understand neurotypical things, shutdown, overstimulated, confused easily, wall flower, pick my skin, overthinking, always worried i’m doing the right or wrong thing, feeling uncomfortable in most social situations, i need structure and careful planning, i don’t do well with change (even small changes)

*POTS- dizzy, nauseous, cognitive decline, black outs, brain fog, heat and cold intolerance, out of breath easily, confused, not able to think logically, sometimes ask questions that don’t make sense. Right Bundle Branch Block- the right side of my heart doesn’t “fire” correctly, so my EKG looks abnormal, but it’s normal for me. 

*chronic constipation, GERD, acid reflux- food sensitivities, diet change (gluten, soy, dairy, acidy foods and drinks, high animal fats like beef, sausage, bacon- i eat a lot of fruits, veggies, rice, potatos, almond and coconut products). these create inflammation, hormonal reactions, being backed up so far it’s an ER trip, terrible gas and bloating

*generalized anxiety disorder

*undiagnosed depression

*chronic migraine and headaches- tiggers: food, dehydration, weather changes, not enough sleep, too hot, food with high nitrates/red wine/sausage, computer screen for too long, neck instability (life)

*restless leg syndrome- soooo uncomfortable, it can get so bad that i'm just crying because there's nothing I can do and I feel like peeling off my skin and crawling out of my body. (think about feeling like this while riding in a car, or driving a car.. yeah.. it’s happened)

*partially reversed cervical spine (neck)- my neck pain and crunching is excruciating sometimes to the point where if i don’t find a massager and quick, i’m going to get a cervicogenic migraine because the muscles in my neck are working so hard to keep my head straight. some days, i have to wear a neck brace around home because the muscles just aren’t strong enough.

Minor

*TMJD- not being able to chew because my jaw muscles are so tense, it causes grinding at night, popping when I open and close my mouth, also causes chronic tinnitus in both ears (oh my gosh, it’s so annoying, and sometimes very loud and weird pitches). I can open my jaw too wide sometimes and pop it slightly out of place, also it can be bad when i go to clean my ears I go in too far and too hard so then my inner ears hurt for a couple days.

*dysphagia- i have a terrible gag reflex and sometimes food, even soup, gets stuck in my chest

*interstitial cystitis (painful bladder syndrome)- had to cut WAY back on acidy foods (tomatoes, strawberries, oranges, grapefruits are a nono, can only drink dark roast coffee, etc)

*allergies (horses and pencillium, outdoor mold, seasonal)

*greater trochanter bursitis

*bicep tendonitis (when I sublux)

*shoulder bursitis

*deviated septum (post nasal drip)

*morton’s neuroma- pinched nerve between toes if i’m not wearing custom orthotics with a metatarsal pad

*permanently dislocated thumbs (Basal CMC joint- custom made hand braces)

*thoracic outlet syndrome- pain and tension and instability in my upper back, neck and shoulders, if left unchecked creates functional scoliosis.. can’t stand or sit for very long without my spine feeling like it’s compression into my hips.

*myopia- near sighted, glasses

*bunions on both feet- the instability and flatness of my feet make my big toes underlap the toe beside it, and push the joint out to the side. the joints then hurt like arthritis (aching, stabbing, pinching). i do have bunion correctors, but i can’t wear them all the time. 

*asthma- minor asthma, i carry my inhaler in my purse just in case. sometimes an anxiety attack can flare it up, or if i’m too physically active.

*hormone deficiency- i use a DHEA spray to level out my hormones, this way i don’t have pimples and bumps everywhere, i actually have some libido now whereas before it was basically gone, and i don’t have as much hair growth on my chin/neck anymore.

*muscle spasms- there was a point to where this effected my intimacy so bad, i didn’t want to finish, because it would create massive muscle spasms that would send me crying running to the bathroom. i have muscle spasms at the top of my rectum that were like something was stabbing me (it’s called proctalgia fugax), i was sure there was something wrong inside. muscle twitches and spasms in basically any body part. face, arm, thigh, foot, glute, bicep, neck.. you name it, it’s probably happened. grateful for meds for RLS and muscle relaxers. 

*vitamin D deficiency- sucks away my energy. i now take vid D3 5000UI to help me not be sooooo tired, now i’m just exhausted ;) but liveable. 

*chondromalacia patella- my knee crunch. the cartilage in between is wearing out. I had to quit running after my sophomore year in high school because they were already getting bad. Now most days either I use a cane or I use knee wraps/braces or I just suck it up because I get sick of using devices and tools. 

I like knowing these things because it has helped me really understand and know myself better. I don't use these things as crutches, and I love to be able to inform people when they ask. For me it's been a journey of knowing myself and finding my place and being able to take one step at a time.. a journey of trust and faith. The labels don't make me who I am, they describe parts of me. I, myself, am a child of God, fearfully and wonderfully made, with a voice that is now supposed to be heard. I was meant to do the things I have in my life and just the right times, because that is God's plan. It's definitely different than I would ever want or dream, it's been a rollercoaster, so many seasons in life, but i'm finding my strength in it, i've been able to help and lead other people in the last few months just by speaking out and being real and open than i think i have ever. I have had to leave the work place because of all these complications and changes physically and mentally, change so many things about what i'm used to: change my exercise, now it's PT, walking and sometimes swimming (even that has been too much to some degree). I've changed my eating habits drastically and my body is thanking me. The thing is, I wouldn't want someone else to have to deal with that I am. I have people around me that care about me and take care of me and WANT to take care of me. I am a mother to these wonderful girls, and because I am I can understand their pains and other things like nobody else would. Jazmine has the same thing I do (hEDS and POTS, anxiety and depression- she also has ADHD). Not to mention all the amazing people I have met because of all the opportunities I have had.. certain Dr's, physical therapy. The "blessing and a curse" analogy is true. It does suck that I've had to deal with these things, and that I will continue to every single day, and getting worse, for the rest of my life, however long that ends up being. But i'm grateful that I've had all the help that I have, the Dr's I've been led to, the support groups i'm part of, the people I've MET in those support groups.. and this awesome backyard i'm sitting in right now. I have a goal to get my flower garden all flattened out and transplanted and ready so next year I get to watch things grow and come to life and have a bench in the middle to just sit and "smell the roses" per se. (I'm not much for roses.. shrugs) Each day is a new day. I will live it to my best.