Who Am I?
I was 13. One morning I woke up "paralyzed". Actually it was extreme muscle spasm. I was told it was probable MS. That was 1978. I
never was the diamond in the set. I was more like the friend no one wanted. I don't say that like oh poor me. I was the one everyone loved to death but how do you be friends w/someone who couldn't do all the fun stuff? We were kids.
Fast forward 2009. I need to see a Dr. Wierd mojo stuff is going on. The new dr. call in a different dr. to consult within over my condition.
He immediately orders a cat scan. Nope doesn't show a thing (I assumed). Then off to the MRI. Hey wait a minute doesn't it take like 4/ever to get an appt. for those. Huh I'm getting a bit nervous. It's 6pm. I leave the hospital n go home not telling a soul what just happened. I was still digesting the fact I got a MRI.
Multiple sclerosis diagnosis
The next morning at about 7am the phone rings. It's the new dr. Can you come in immediately. OH CRAP!
The dr. looks a bit stressed.
He gently picks up my hand and says, sweetheart I'm going to be blunt. I'm just going to say it. No beating around the bush. I then say ummm sir you're beating around the bush. He gives a nervous chuckle n then looks at me w/tears in his eyes. Sweetheart you have multiple sclerosis.
There was a reason I was so "odd"
I just laugh n say oh ya I know. I was dx'ed as probable in 1978. So is there anything else. The poor man looks confused. Questions start to flow from him. Well slap me terrified, as the next hour he explains soooooo much. I fall to pieces. Not because I was dx'ed w/m.s. but why was I lied to for so many years. There was a reason I was so "odd".
Forgiveness of self n others was a hard pill to swallow. So there was reason I was always sick n a klutz.
I end up traveling a very unmaintained trail on a very steep mountain for the next 5 years. Everything that could go wrong did. Exponentially.
The hardest thing was watching my husband going through this hell with me
It was hardest watching my husband walk my hell w/me. I was in the hospital more than not for 3 yrs. Steroids caused me to gain approx. 70 pounds. My skin was ripping like paper n bleeding. You get it right? But this man didn't leave my side. They called us Ken n Barbie. He was still "Ken." I was ugly, confused, angry n scared. Only one of our kids accepted the new me at that time.
Everyone else was too ignorant or scared.
I heard everything from you don't look sick to I know a lady that works at the bank who has MS n she's fine. ARGHHHHH.
FAST FORWARD TO 2020.
I'm alive n well. Still a bit confused about feelings towards my parents. And my family's reaction, But...
I'm walking n talking n cooking n can do so many other things as long as I pay attention to myself. I think that's an ongoing challenge. We had 4 kids n now 9 grandkids. As a parent/grandparent you want to spoil them w/your lil life specialties. But I just constantly have to tell myself do this, this n this n you will end up in bed for days or do this n this which is equally special n survive to play next week.
My children now understand MS
I am happy to report all children now understand that MS is not a made-up catch all phrase but an actual disease. My parents ignore their quilty feelings. I hold no malice. I just wish they would deal w/themselves n unburden their fears. We never were a close family but....
The emotional symptoms are the hardest
Dealing w/emotional crud is the hardest part for me. I lost most of the steroid weight n my skin took the brunt of that but still have a meh time knowing I'm not the same "Barbie" I used to be.
I'm blessed, I am heart strong I am loved.
Thank you everyone for being vulnerable and strong. It inspires courage.
Do you have a fear of needles and take medication that requires injection?