The loss of feeling continued to spread, I was sure I was dying. I began giving my husband instructions on how to raise our babies, and started trying to process how we would tell them.
The storm was here and I was in so much turmoil about their futures. (Insert from The Calm Before The Storm)
This picture was taken in 2002 approximately 9 months before being diagnosed.
While more tests were being ordered, looking for answers, the loss of feeling continued to spread. I lost the feeling on my entire right side, plus my whole head and neck. When the feeling loss first began to spread, my first thought was a brain tumor, that was still the only thing that made sense to me. I was waiting and preparing myself to hear the worst from a doctor.
I had so many emotions concerning the future of my family. My husband and three babies were all I could think of. I couldn’t help but wonder if any of my babies, ages 1-4, would have memories of me. I was trying to stay positive and as usual, turned to my joking personality to help deal. All I could do was put it into God’s hands.
I can’t remember how many days I had been in the hospital, preparing to hear I was dying, before the neurologist I had been assigned to came in with the news. He was very professional, empathetic, and to the point. I can’t recall the exact words, however I do remember the relief of finding out it wasn’t a brain tumor and I wasn’t dying!
After informing me that they had found several lesions in my brain, evidence from the spinal tap, and had ruled out any other possibilities through several other tests, the doctor informed me that I had Multiple Sclerosis. All I heard was…it’s not a tumah! If you haven't seen Kindergarten Cop (Arnold Schwarzenegger), you should watch it. And yes, in my head that’s the voice I heard. My first reaction was laughter!
This confused him! I recall him saying he had witnessed many reactions over the years, but this was the first time he had someone laugh when given the kind of news he had just delivered to me. I let him know that he had just told me I wasn’t dying and that I would be there for my husband and my babies. With that being off the table, we were able to start processing what was actually going on.
I had heard of MS before, but had no idea what it was. At that time, we had a National MS Society Chapter in my area. Ironically, my sister-in-law worked there and counseled people with MS everyday. If I remember correctly, she was my first phone call. I don’t think her and my brother were aware I was in the hospital until this call. This may not be 100 percent accurate…this the conversation as I remember:
Her: Why are you calling me from the hospital? (I think she knew due to caller ID)
Me: I was just diagnosed with MS.
Her: That’s not something to joke about.
Me: I’m not joking.
Her: I counsel people with MS everyday, and I can’t think of one damn thing to say to you right now.
At this point, she hung up on me. There is a very special bond between the two of us, I knew she was processing what she had just heard. She called me back within a few minutes.
That may have been the first time I heard her curse. She informed my brother in person later, knowing that wasn’t something he needed to hear over the phone. They knew more about what was ahead of me than I did. They both knew this wasn’t a problem that could be fixed, so they moved into the next step of giving me the knowledge I needed and making sure I was aware of any help that was available to me.
I began my first dose of Solu-Medrol which brought on its own complications that I will go more into another day. The initial reaction to it was a body migraine, I had had migraines in the past but the term body migraine was new to me. The doctors had a hard time figuring out how to get me out of the severity of the pain I was in. It ended up taking a pretty high dose of Percocet. I had to take it 30 minutes before each treatment began. I traded in my pain for severe nausea and itching. After a few days of Solu-Medrol in the hospital, I was sent home, against my doctors wishes, to finish the 5 day course using home healthcare. I am thankful for health insurance, but they shouldn't be allowed to override the doctor's opinion.
After 31 years, this would begin my journey of figuring out how to live with this new, foreign body I came home with. I didn’t know if I’d ever be able to pick up my babies, drive, work, or be left alone again.