And So It’s Official

The neurologist sent me to yet another doctor. This one is a neurologist-ophthalmologist. I guess when they get a rare disease they feel obligated to spread the opportunity around. After a ten minute consult, he stated that my eyes were fine and he agreed that it was a stroke. His advice, return in 6 weeks. I have an outstanding neurologist and an outstanding ophthalmologist so I did not make a return appointment.

At 55 I felt fear and disappointment after hearing this news. Disappointment that the only thing that could be done was a baby aspirin. No magical fixes. Fear because I know that strokes are signs of Sarcoidosis becoming progressive and possibly terminal.  Disappointment that the plans I made may change now.

have known from the beginning that the sarcoidosis is producing granulomas on my brain stem which causes inflammation. I knew this day would come when the goal would no longer be to get the disease in remission. Now the goal is to control the disease enough to keep me alive. A stroke in the brain stem area of the brain can kill you instantly.

I spent a week pleading, cursing, and bargaining with God. Then I read a secular supernatural thriller written by a christian author that made a point that I really needed to hear. Who are we pleading, cursing or bargaining with God. Even Jesus prayed “Take this cup from me” and “My God, Why have you forsaken me?” That was the son of man side of Jesus. The Son of God said “Not my will but Thine” and “I commend my soul to Thee.” (I am paraphrasing so please forgive me if they do not match your Bible word for word.)

I found a peace in knowing that a power greater than I, a power that I can never understand, is in charge. All I have to do is relax and let Him control my destiny. Whatever His plan, I am in good hands.

You Know You

I recently started having headaches that were becoming more frequent and lasting longer than my usual migraines. One night I was relaxing watching TV, playing solitaire on my laptop, and talking on the phone.  (You know women can’t relax if we aren’t multi-tasking.) I noticed some blurriness so I got off the telephone. Pretty soon, I was just listening to the TV since I could no longer see it.  I became alarmed when I had to shut down the laptop because I could no longer see well enough to tell the numbers or suits of the cards.  About all I could see were colors.

I know when I have just done too much and need to relax.

I have had migraines since age 15 and have always had some visual signs before the headache started.  This is very typical of a classic migraine.  These headaches were different.  It wasn’t just having to squint to see or blink to refocus.  I just could not see.  It was as if the my glasses had suddenly become clear fake glasses.   I can’t say that it was double vision because I could not see enough to tell if the image was double.  I could feel my left eye pull and droop.  My husband came in and saw it.  He thought I was just very tired.  I didn’t say anything.  I really was so out of it, I wasn’t thinking.  I fell asleep on the couch at 8:00pm and he sent me to bed.

My eyesight very slowly came back over the next week, but my left eye still seemed to twitch and jump.  It felt like I was only looking out of my right eye. And I was still having more frequent headaches.  I knew this wasn’t normal for me so I called my eye doctor.  After a thorough exam, he said he couldn’t see anything in my eyes to explain it.  No sarcoid granulomas or inflammation.  However, my vision had decreased considerably in the left eye and I wasn’t using it for some reason.  So, he wrote me out a prescription for new lenses which just happened to have to be custom-made.

At my next regularly scheduled neurologist appointment, I explained what I had been experiencing.  I had just had an MRI of the brain last year but another one was required.  Two days before vacation we got the news.  I had another lesion in my brain.  The doctor gently explained that this lesion was close to the brain stem but that no sarcoid inflammation was seen.  With no inflammation apparent, he thinks the probable cause is “small stroke activity.” (His words.)

What does this mean?  I have no idea.  More to come on the neurologist recommendations.  If I had not been aware of what was normal for me with migraines and what was unusual, an MRI would not have been scheduled.  I am certainly seen by numerous doctors, but they can only know what I tell them.  Please, be aware of your body and be sure to tell your doctor of any changes that are not normal for you.