Hi, I am Jenny. I am super private about my ailments..here goes.
I am 44, mom to three and wife going on nineteen years. In my younger years I played sports, track.Was very very active. I had traumatic accidents when I was younger (hits to the head)and didn’t receive the right medical care…but didn’t affect me till..Later in life starting when I had my first child at 21 did I start to have micro-siezures.(don’t like technical words about my diagnosis). When walking I would have a micro seizure it would break the electrical connection and I would fall,trip. Especially when walking off a curb or stairs or ladders. You can see it in my speech if you know me well enough.
One day I dropped my new baby. I was in front of the bed and it wasn’t far and he landed on the bed.. I started strapping him in the car seat to carry him around the house .. I dropped the carrier a few times with him in it too..I cried so much, felt super helpless.
I saw my first neurologist at 21. Thru all the testing what I came out with was; the trauma points on my head as a young child that didn’t get treated formed scar tissue inside my head on the other side of the outer-injury causing breaks in electrical connections. So they couldn’t really do anything for me other than meds and come in periodically for MRI or dumbo eeg testing.(over 2o years I have had a love-hate mostly hate relationship with my neurologist).
Fast forward to 2007. On Dec31st at 9 week pregnant I developed a blood clot in my lung. After that months of anti-coagulant injections into my stomach to keep clots away and my blood flowing smoothly and trips to my perinatologist for ultrasounds every few weeks, my daughter was born. My health started deteriorating from that moment on. I battled almost fatal infections.. my spoonie health exploded in 2010 when I finished Portland Marathon 26.2 miles(I was a runner since I was little and it got really challenging after seizures hit the mix) after that marathon I developed chronic IT-Band contracture which I still have to this day.. I have never ran again.
Went to multiple rehab ortho PT therapists.. I guess I have a bad case they have never seen before(as Spoonies,not new hearing that)again I was devastated. Following later that spring and years following my health just spiraled..I developed hashimoto.fibromyalgia-chronic fatigue…chemical sensitivities. Environmental illness. I have about 80 cysts under my skin on both legs.. You can’t see them from the outside but you can run your fingers along my skin and can feel some of them. They are down both thighs and inside my thighs too.. Ultrasound is super painful whenever they do it. I develop injuries that I didn’t do anything to get them. Torn labrum, frozen shoulder .. Last set of MRI and MRA diagnosed those. I am not able to walk well some days I have to hang on to the walls in my house. Real bad days I just don’t get out of bed because my muscles don’t work or they are to tight. I am screaming and crying in my head but all my friends and family see is a face that tries to smile but looks in pain 24-7.
I am currently trying rehab again for my legs. My chemical compound reactions is thru the roof. I have to plan trips to the store or other places carefully. When I get dosed by chemical compounds whether it be body products that people wear or cleaning supplies or whatever toxic is in the air that day.. It affects me. It induces heart arythmia.. Brain swelling.. Grand mal seizures…numbness to face. Limb loss of function to name a few.
So those of you who wear perfume daily and go out in public… Friendly reminder to bring it down a notch. Atleast give someone a 5 foot radius to not be harmed. I don’t know how many times my look of deer in the headlights face comes in to play when I can smell someone 15 feet away from me at the grocery store and I have to duck and dive to stay out of the trail of perfume. It is frustrating that one trip to store can mean lockdown to my bed for 1 week while I recover. So dealing with this chemical thing for 7 years.. I am like a ninja in the stores.lol.. Honing my spoonie survival skills.
I have found solace in my home studio where I am a Metalsmith. I love creating jewelry out of silver and copper. No matter what my body is doing.. If I am able I can drag myself to my chair and create something pretty in my world of sickness.
Meds.. I am not on any meds period.. My body reacts to them violently because of the chemical reaction thing. I feel everything in full colorful pain that it is. I wish I could take some of the meds my docs prescribe..but alas here I am, unable to even take a Xanax..
Oh well.. Each day, right. My saying is “perhaps tomorrow” <3. I have more body issues and “medical” diagnosis .. But my thumb hurts. 🙂
Carry-on fellow Spoonies..we can use our last spoon today to dig into something sweet later today <3
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