Medical Update

"My hope is built on nothing less than Jesus' blood and rightousness..."

Actually, I have to confess that I have not done a good job of maintaining a steadfastness in the statement above. It is a daily struggle to not place my hope in the next bottle of medicine or doctor's appointment. I don't like having Dystonia and being a "jerk" all of the time. Whatever novelty there might have been in going from doctor to doctor for a diagnosis has long worn off (well, there wasn't much of it to start with). I continue to be thankful to God for bringing me to a good doctor who knows what my movement disorder is, though.

Yesterday I had a three month recheck with this doctor in Birmingham. The medication he gave me three months ago does not seem to have affected the spasms much at all. The side effects are bothersome (dry mouth and throat, short term memory loss, nausea, blurred vision) so I was quite happy to be taken off of it. Of course it will be replaced with a different medication for me to start once I am fully off of the old one. The two medications have a very different mechanism in how they affect the brain so it could be possible for one to help but not the other.

The doctor made it clear that IF this new medication helps it will not totally alleviate the spasms. At some level I knew that, but hearing it was kind of like a slap in the face. I am beginning to realize that I have been putting too much hope in the medications and not enough in the Lord. My goal has been to find a treatment that will take the spasms away rather than finding out how God can use me throughout this illness. Unless He chooses to bring this illness to an end, it will be with me the rest of my life. The intensity of the symptoms will likely ebb and flow, but it will probably never go away completely.

There are other medical options besides drugs, namely Botox treatments and Deep Brain Stimulation (DBS). The Botox is specific for certain areas and would probably be limited to the spasms in my head and neck, if we chose to try that treatment. DBS is like having a pacemaker in the brain and is used specifically for those with Generalized Dystonia as compared to having Dystonia in only one area of the body. I am not in a hurry to consider that as an option, since it involves surgery.

For now, I will continue to work with the medications - coming off of the old one and starting the new one. The doctor also said something that kind of surprised me. He said, "Don't go to the ER if the spasms get worse." I asked him why and he said that because the spasms are made worse by stressful situations, going to the ER is one of the worst things you can do for them. I had pretty much come to the same conclusion on my own and I told him how I currently deal with flare ups (go into a dark and quiet room and lie down, taking a Valium if necessary). He commented that this was a good way to handle it - that I should "take a chill pill." Ha! I loved that comment since I very often tell this to the kids, so I asked him if I could consider this to be an official medical term. ;-) From now on I can tell the kids that my doctor has told me to take a chill pill so, as Doctor Mom, I can tell them the same thing.

I really appreciate all of the prayers and concern many of you have blessed me with. The main challenge at this point continues to be with my legs and feet. The muscles freeze up when I walk, making me walk much slower than usual. It is a bother, but I am thankful to still have the ability to walk and drive.

I continue to be thankful for our recent Sunday School series on Biblical Contentment. Although I fail on a regular basis, these lessons will hopefully help me to regain my focus along the way.

Blessings
Ramona