In March of 2018, I had some doctor appointments to figure out what was going on with me.  One was to my allergist because I had what I thought to be recurring sinus infections.  My normal doctor was out that day and a different doctor saw me.

I believe this was divine intervention getting me to the next correct step in the process. The allergist checked me out and told me that what I was describing didn’t sound like sinuses. He said the pain I was describing sounded more like tension headaches or migraines. He referred me to a neurologist.

I explained everything that had been going on in my body since September 2017,  to the neurologist. Because I said I was “losing my words”, he sent me for an MRI.

Now, after I got over the euphoria of being told I was too young for anything, I came back to planet Earth, and my 40+ body, to hear him giving me instructions for the MRI.

On May 5th, I went for my MRI.  On May 6th, I had a birthday.  On May 7th, the neurologist called me to tell me that I had 4 lesions on my brain that looked like Multiple Sclerosis. He was very shocked, he said, because I didn’t have any other health issues. I guess most people don’t consider all the symptoms I had to be health issues, but I will leave that alone. He said that the diagnosis needed to be confirmed with a lumbar puncture, so that was scheduled and by the middle of May, the diagnosis was confirmed.

I told my husband.  He stared at me. I don’t know if the way I was saying it made him think I wasn’t serious or what. I probably just said it like I would say how is your day. I’m not even sure that I felt anything at the time. It just was and I just told him.
I was scheduled for steroid infusions the Week of May 21st…

Infusion Center

The first treatment prescribed by the neurologist was 5 days of outpatient steroid infusions at 1,000 mg each. I was hooked up to an IV and the medicine dripped over an hour or so. According to the neurologist, the side effects, which most people don’t experience, are stomach irritation and irritability.

The first day of treatment, May 21, 2018, I went to work (yes, work…I’m an overachiever, what can I say?), pensive, but excited. I had pretty much been in a flare for months and was glad to get treatment. The infusion took about an hour. I got a little nauseated but was MS symptom-free afterward. I felt better than I had in a loooong time.  After that, I armed myself with some ginger candy and Sprite, and was ready for the next day.

The next day I did better as far as the nausea was concerned. I made sure I ate, had Sprite with me, and ate the ginger candy. I breezed through this infusion…until the very end. All of a sudden, my chest started hurting and feeling tight.  I shifted in my chair to see if changing my position would fix it but it did not. Finally, I asked the nurse if my chest was supposed to hurt. She looked concerned, said no and took my blood pressure.

It was 157/93.  High enough for her to wheel me over to the ER. There, they took vials upon vials of blood and ran a bunch of tests.  I made it out of the ER after about two hours. The next day, I went back for more. All in the hopes of feeling better, whatever that meant at this point.

After my ER episode, they were now giving me Benadryl before my infusion to ward off the blood pressure side effect and any others that might arise.

Benadryl!?!

Really!

One little tablet of Benadryl makes me feel like it’s next week when I wake up and you want to give that to me intravenously!?! Yeah okay.

I requested less than what the doctor ordered and went on with the transfusion. My blood pressure went up to 157/93 again, but I guess the Benadryl kept the chest pains away. I made it through day 3.


On day 4, my blood pressure had risen to 163/98. I just KNEW I was on my way out of the earth realm. A nurse, who wasn’t my assigned nurse, was super chatty with me. I was trying to respond, be nice, and focus on my final words at the same time (LOL) when my nurse finally stepped in and shooed her away.

About 30 minutes later, my blood pressure was 156/86 and although still high, I felt well enough to drive home.

The next day was supposed to be my fifth and final treatment.  I had vowed that I was not going back. But I didn’t really know if I would have the courage to fight the doctor on this one. He WAS, after all, the doctor and knew how to treat me.

Before I could even call him, he called me and said we weren’t doing the last treatment. If I recall correctly, he had gotten notes from the nurse doing the treatment. I was relieved because I didn’t want to have to fight him.  LOL!

I spent that weekend (Memorial Day weekend) in the bed mostly. I was exhausted and felt like I had sunburn…on the inside. It was an awful feeling.

What I learned from that experience:

• I need to be my own advocate with these doctors and fight if I have to fight. Together we need to agree on treatment. I cannot allow them to bully me into a treatment plan. They cannot dictate just because they are the doctor.
• I need to QUIT being an overachiever. I should have someone go with me for procedures like that. I never know how they are going to affect me.
• I will not see myself as an inconvenience or burden to those who love me. I can’t be mad that no one helps if I don’t ask for help.

Infusions are of the devil…

I’m only kidding. However, I see why people who have to do that as a way of treatment decide to not be treated.

The way I felt before the steroid infusion, except on day 1, was better than after. And after, there were the new symptoms of numbness, tingling and nerve pain in my right leg.

Lovely. Just lovely.

And the way the faith community treated me took me by surprise.