You know how the older you get the harder it is to remember things? Sometimes you're a little clumsy... Sometimes a bit of a space cadet. Words often take root on the tip of your tongue and remain there? And when that happens on occasion you laugh it off, blame it on aging, and it doesn't happen again for weeks or even months?
What about taking a walk outside with your kids, your pets, or just yourself- the warm sun hits your face and you smile and take it all in... Or the frigid winter months... You bundle up and have the snowball fight of the century, build a snowman, make snow angels, or go sledding with your family.
Do you have a cup of tea or coffee in the morning and are able to stay awake all day? Can you hold things? Can you form a complete sentence while speaking without stumbling?
Patient X- Can't remember things from day to day. She relies heavily on calenders and alarms going off with reminders of what is coming up so she doesn't forget (for example) when to pick her kiddo up from school. She is highly educated. She was often told she should be a comedian because of her sharp wit. Now she has to pause every time she speaks because she can't recall the next word she is going to say.
What makes it worse, she is completely aware of what is happening. She is completely aware that she's losing it more and more every day. Yet she plugs along- silently screaming. She can no longer work because the stress sends her body into total numbness. So she does what she can at home. However, she's clumsy and often drops things. Most of her dishes are chipped because she cannot hold on to them while rinsing them, or putting them away like she used to.
So perhaps a spell outside in the sun just to sit, relax, take a few deep breaths, and de-stress? She cannot go out in the heat because the heat makes her go numb. Winter time then should be ok all bundled up right? Well, the cold is so painful that she needs narcotics to control the pain.
She cannot wear her wedding ring as it makes her entire arm go numb, even tho it would fall off if she held her hand down. She can't brush or wash her hair because her hands don't work right sometimes. Forget holding a pencil.
This, of course, assuming she can even stay awake. The extreme fatigue hits like a freight train. The only option she has is to sleep.
She cannot look from left to right, up or down without an electrical zap traveling up her spine. She suffers massive migraines that completely restrict any functioning whatsoever.
She doesn't qualify for disability even tho she cannot work.
She suffers severe anxiety because she's been hospitalized twice for blacking out, once while driving when her family was in the car.
You'd think she was an old woman in a retirement home. She's only 38. She's me.
People with Multiple Sclerosis experience different symptoms. No two people seem to be alike in anything. Except perhaps this thing called CCSVI. That means that people with MS have severe blockage in their jugular veins that restricts the flow of blood to the brain and heart. What the procedure does is it 'liberates' the blockage, puts in a stint, and allows the blood to flow again.
The exciting part? All those symptoms I have can go away. I can regain my smarts and my wit that I pride myself on, I can go outside with my daughter in the summertime and not lose feeling in my body, I could have a snowball fight! I might have a set of dishes without any chips! I COULD STAY AWAKE!!!!!
My insurance will not cover this. There are not doctors in my state that will do this. Only because I have MS. If I complained of feeling lightheaded, dizzy, pressure in my neck and head, (all of which I have) they would eventually check my jugular veins. Since I have MS it's considered a new procedure, and therefore, not covered for me. So I need to go out of state (California, or New York) to have this procedure done. It's short, sweet, and gives me my life back.
I need help. I haven't worked in 2 years. My husband makes barely enough for us to keep the lights on, let alone food. He has a chronic disease requiring lots of medical attention. And we have a daughter with her own medical needs. I need to be able to help my family and right now I cannot do that.
I think asking for money for myself is weird. I'm uncomfortable. I have researched, made calls, written letters, and done everything I can think of trying to make this surgery happen. Now I'm asking for the kindness of my friends, family, and strangers because I need help. I need to be here for my husband and daughter. I need my quality of life.
Thanks for reading my story.