I waited quite awhile before going to a neurologist.

My PCP pushed me until I finally went. She really thought it could be MS. They did their tests. They sent me to a neurologist who specializes in MS. I had the tests again, they also do a spinal tap. I go back and the results are in, I have MS. That same day I was given my first Solumedrol infusion.

The steroid infusions have led to weight gain & bloating. This man reminded me everyday how beautiful he saw me.

I was a wreck for months. Try this med, try that med, another test, infusion, procedure, new doctors, it was insane. It got to the point where my husband would carry me from the bed to the recliner & I would sit there drooling and staring at the wall.

Finally they found a combination of meds that worked. It wasn’t perfect. I was tired, mentally unclear & weak. But I could function. I did everything they told me. I ate what they told me, took the meds they told me to take, exercised, rested, everything, I did everything they told me! I was having infusions 3-5 days every other month. I had a Med port placed in my chest. Things maintained, but it wasn’t great. It’s unimaginable what a person can go through and still make everything look ok.

I’m gaining weight fast & bonus, I’m losing my hair.

At this point I’m fighting for disability because I can no longer work & medical expenses are climbing. My husband was working at a job he enjoyed and made damn good money at. We had 2 kids in college. I could not care for myself, the house or navigate all my medical appointments. The bills were piling up as we were just trying to get me the meds & treatments I needed. We had to do something.

David put in his notice he’s quitting his job. I have an appointment to go to, but he just gave his 2 week notice. I tell him it’s ok, I’ll figure it out, I’m fine.
I lied. I’m not fine, it feels like nothing will be good again & these doctors are starting to make me feel like the ball on the Atari pong game. I feel more like an illness then an actual person when I’m at the doctors. They. Don’t. Care. I feel the darkness creeping in to my sun shiny soul.

So he did it, David started his own business. The money was good, the insurance options were terrible, but he could make his schedule. He took me to nearly every appointment, he helped me everyday.

At this point I’m so bloated, people don’t recognize me. I should’ve been an actress. I’m great at pretending I’m ok.

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