Around the time i turned 30, I started seeing Dr's for problems that were popping up more and more. Some of these things I remembered happening when I was younger as well. I would have moments of memories when things that had happened when I was a child suddenly made sense.. when I heard about a genetic problem called Ehlers Danlos. This syndrome happens when you're born.. you hear me? You're born with it. Hence being genetic. Hence.. the whole reason I can remember times through my childhood where things happened that I didn't know were abnormal.. until now.
Hi, I'm Cami.
And I was born with Ehlers Danlos Syndrome, hyper mobility type (hEDS).
When my body was created in the womb, one of the parts of my makeup was created faulty.. it's called collagen. It's like the glue in your body that keeps everything together. It's our connective tissue. And mine wasn't built right.
This created my anxiety and depression (I have regular anxiety, that i see a psychologist for and take medication, and also a different kind of anxiety because my body creates extra adrenaline- this can't really be helped by medication or counseling because it's not mental).
This created my cognitive function problems in school and work.. that i didn't know were cognitive function problems until recently. Now they make sense. (not being able to keep up at jobs, not knowing that i'm messing up data entry, not knowing why I could study a lot but not get good grades.) It's almost impossible for me to change from one thing to another without having at least a little break down (yes, including tears and anxiety). My brain can't multitask like it should be able to. My neuropathways don't talk to each other like they should.
This creates communication problems.. this makes relationships even harder. If i'm thinking something and/or having a conversation with someone, I can't always say what I want to. I'll have it all planned out in my mind, but when it comes to speaking it.. there's a disconnect. And then I start getting frustrated, and it makes it worse. It's so hard for me to actually say what I want to or need to. This is one reason I prefer to type.. because physically talking to someone takes so much out of me, it's so hard to do. Finding out what brain fog is.. days where I can't think at all.. not knowing what i'm supposed to be doing, just walking around the house in circles shrugging my shoulders.
This created problems with my proprioception.. I would misjudge the same branch on the same tree constantly and always fall from the same spot right onto my back. But I kept climbing. (I'm not aware of where my body actually is when I think it's somewhere else. IE i think my foot is far enough away from the door to not get hit, when in reality.. boom, ouch. probably gonna leave a gash in my skin). I would fall off my bike, fall when rollerblading, knock into doorways, bookshelves, fall down stairs, trip over my own feet.
This is why I have sensitive skin. I have super baby soft skin. It's a lovely thing! Until you don't know how dry you are so when you finally lotion, it burns soooo bad. And parts of my face get dried out so bad i get scab areas that look like bad breakouts (mostly on my nose and ears). And if i bump into something too hard, i get scrapes and bruises easily.
Because this also effects how resilient my inner organs are. Bruises. I get them everywhere. Most of the time they are small. Sometimes I don't even know how they occur. (problems with digestion, heart palpitations and abnormal sinus heart rhythm). Have dysphagia (hard to swallow and sometimes food gets stuck in my chest, even soup), GERD and acid reflux, recently had a GI scope and found uncers in my stomach, went back later the ulcers were gone but now i have polyps and a hiatal hernia.. joy. Have problems with multiple foods.. finding out what i'm sensitive too and how I can adjust my diet to make me body feel better and what triggers what. If I want to feel my best, I eat no acidic foods, no sugar, no dairy, no fatty meats, nothing with gluten in it, no alcohol and no hard beans. Acidic foods make my bladder burn (painful bladder syndrome AKA interstitial cystitis).. so i even have to only drink dark coffee if i want to drink coffee, and only have dark chocolate if i want something sweet. My pregnancies.. the first one (we didn't know I had POTS) i was put on a low sodium diet and bedrest and only made it 4 weeks because my kidneys were starting to fail. My husband would have lost his wife and his baby if the Dr's hadn't caught it on my stress test that day. The other two babies never stayed in past 38 weeks, the second one came out natural with one push after only being in labor for 4.5 hours. (unfortunately for her it was too fast and she had to be in the ICU for 30 hours because I could hold her, too much fluid in her lungs.)
This is why I get dizzy when I stand up.. it causes a problem with my autonomic system (the part of your body that communicates using the nervous system to tell my blood flow to follow me when i stand up.. it doesn't get there on time, so i just get dizzy.. and i've passed out from this.. 4-5 times times. Once was in high school, once was in college.. once was when i tried to give blood for the first time.. once was when i got shots for a migraine* too close to the vagus nerve). This is called dysautonomia. The kind of dysautonomia I have is called POTS and vasovagal syncope and neurocardiogenic syncope. Because my blood flow doesn't keep up with my body, I have problems regulating my body's temperature. I'm a hoodie and sock girl all the way.. my fingers and my toes are almost always cold, i'm used to that. I can't go in a hot tub for any length of time. I'm super sensitive to heat on my skin.. i hate the summer.
This is why I have to wear braces on my body. My joints are extra flexible, called hyper mobile. My elbows, my knees, my fingers all bend backwards, I have swan neck deformity in my hands, my thumb joints basically stay dislocated because they're so worn out.. lots of joint pain because of the extra flexibility. Basically feels like osteoarthritis, but without the actual breakdown of cartilage. My knees have condromalacia patella (crunching under my knee caps, which is slowly wearing out the cartilage). I subluxate (partially dislocate) my fingers, hips, shoulders.. i sprain my wrists, ankles.. I have back pain almost constantly. My sacroiliac joint is unstable.. i wear a special belt every day to help it from coming out of place. My neck is straight and partially reversed, causing headaches because it's unstable. My fingers locking up when I would play flute or piano. I have bunions because my toes are super bendy, my big toe doesn't like to stay straight.. so when I remember, i wear bunion correctors. And I have morton's neuroma.. a pinched nerve in my right foot, so i only wear a couple brands of shoes as well.
This is why I have nerve pain.. because they get pinched and pulled all the time. Numbness in my fingers, radiating nerve pain through my skull (had a CT, nothing shows signs of stroke), sometimes not able to pick up a glass of water, unable to enjoy physical intimacy sometimes because of the neurological after effect, or because of something that's causing me pain right then.. shooting pain or something that isn't sitting right in a joint making a nerve get jacked up. And the lovely life of migraines, constipation, muscle spasms and restless leg syndrome. I've never slept very well, even as a child.. gotta love insomnia. But I read a lot of books. ;)
This is why my hormones are off. I have to take a spray under my tongue to help even them out so i can feel normal feelings. I actually have some libido now, I had barely any for years (took different supplements, tried counseling).. bloodwork is an awesome thing. I am able to find moments that I can be more spontaneously fun, and a lot of my pimples have subsided *YES!
This is why I can't go out in the yard and play soccer or chase after my kids without paying for it. We generally take a day trip to go somewhere that we have a membership to every couple months. This requires me to rest the day before, bring my cane and my wheelchair because by the end I can barely walk without pain, joints wanting to fall apart, can't use the cane because it requires the strength from my shoulders and hands and they wear out, my energy is completely gone. I have to alternate. I have to adjust to a new way of life. I do as much as I can on a good day, but I have to remember if i don't listen to my body and overdo it, i'll be paying for it for days afterwards.
And I have to adjust to not being able to work outside my home because I never know what the next day, the next hour, the next minute will bring. I was literally sitting at my husbands office playing on my phone until he could take a break, and my shoulder decided to take a ride out of the socket.. slid just a little bit out, nerve pain shooting down my arm. Going from a chronic illness level 3 (my everyday level) up to a 9 in a split second, because my body can't hold itself together. Had to put my arm in a sling for the next two days because it hurt so bad, even after moving it back in place.
I found a great PCP, after 8 months of searching for the right kind of Dr. He is a Dr of osteopathy, so he can adjust me when I need it, refer to me specialists (which now i have a great team that we've been building.. i have a rheumatologist, cardiologist, neurologist, gastroenterologist, urologist, otolaryngologist), able to refer to me to physical therapy (i've been referral twice now.. have thoracic outlet syndrome, pelvic floor dysfunction, scapular dyskinesis, functional scoliosis, cervicalgia, SI dysfunction, flat feet [got custom orthotics to help my feet and ankles because there's no support]).
....
I will say in all of this God is good.
He's placed amazing people around me to guide me through this journey. My husband, my BFF, just the right Dr's, a couple family members, support groups that i was led to.. His faithfulness is so reassuring. Giving me strength when I have nothing left to give of myself, learning to give myself grace, and learning to ask for help when I know I need it.. i'm not good at that. I've always been a DIY person.. it's hard for me to accept this sometimes.
But accept it or not, this is the new me. I'm learning to be ok with her and learning to even like her at times. There is always a silver lining.. sometimes you just have to work harder to find it.
Like being able to jump hurdles and do cheerleading really easy because I was flexible, having a broad range with my voice when I sing.
I didn't start having more problems until after I had kids. That started me on a slow decent. I had lots of pain working retail (on my feet a lot), only worked the front desk at a lawyers office for 4 months, was a circuit coach at Curves for 8 months (couldn't mentally get it, and injured my sciatic nerve working out), had a huge problem with my anxiety working at a fast paced dentist office, and then finally got to work at the place I've wanted to be since I was a kid.. The Christian Family Centre. From then I realized it would be my last job.. I couldn't do it anymore. I volunteered there for 18 months, worked on staff for 1.5 years, then I injured myself in an exercise class about a year ago and it's been more rapidly down hill since then.
I feel blessed to have done as much as I have. I've been able to travel the world doing mission work 4 times, was in cheerleading for 6 years, track for 4 (they made me stop because I was ruining my knees), was part of church worship from when I was a kid up until 2017.
I have been able to bring this to my sisters attention as well, since she deals with a lot of EDS symptoms. We've been talking over the last year. She's not pursuing a diagnosis, but that's ok.
My older brother has migraines, allergies (i do too), asthma (i do too) and hyper mobility. My younger brother, as far as I know, doesn't have any of this... praise God!
And i'm glad I know now why my body does what it does, because with this being genetic, I have to be careful with my daughters. My oldest daughter also has it. She is 13 and still wears pull-ups because her bladder is stretchy and hasn't matured the way it should, she is VERY hyper mobile, just like I was at her age (used to put my feet behind my head), has ADHD, gets tired very easily, sprains her ankles very easily (needs insoles because her ankles roll in). I'm glad I know what to do to help her. Has some anxiety and social depression. She has gone through physical therapy to strengthen her joints, has a rheumatologist and a urologist (her bladder and kidneys look normal, so maybe some pelvic floor dysfunction). She also has POTS (thankfully she was able to get a blood work up and an EKG this last year).
My youngest daughter has constipation issues, so she's on miralax, and also has ADHD and anxiety.
My middle child sprains herself easily and has a major adjustment disorder and anxiety, some OCD.
So grateful for a husband who is there through it all, willing to learn and willing to help.
.......
Interestingly this is just the beginning of my journey as a Zebra. I was finally diagnosed 6-26-2018, after lots of ruling out of other things.
I don't have any immune disorders, i don't have any arthritis, no lupus, no gout.. my rheumatologist thinks there might be something else going on. (i'm being tested for Aspergers Syndrome in March)
I do have vitamin D deficiency, so i take 5000IU of Vit D 3 every day to help my energy (nice to not feel so sluggish).
And because of my dads side family history of heart problems (probably where the EDS comes from) I take fish oil and check my heart rate and EKG on my watch as often as I think of it.
At this point, i'm getting used to being an advocate for myself (being braver than I used to be and this does cause some anxiety, but i'm doing it), and starting to advocate for my children as well. I actually switched them from their pediatrician (we've been with the same one since birth) to a new one, because I don't feel like he was really listening to our concerns. The older they were getting, the less he was helpful. So i'm glad we have fresh eyes on my children. :)
