Tune-In-Tuesday: Doctor's Appointment Update

I had an appointment with my neurologist this past Thursday, July 18. It’s been my routine to blog about appointments right after I have them, but this time, I had to chew on it a little more. I’m in a MUCH better mood tonight than I was the day of and even the day after the appointment. I had an 8 am appointment, which I usually love because I can get in and out and on to work in a rather quick way. This 8 am appointment was different though. It left me feeling like I should have had a later-in-the-day appointment and then I wouldn’t have felt sad all day. 😉

This is definitely how I feel some of my prayers come out sounding, but God is faithful and knows what I'm trying to say, so it's all good!

Dr. T. asked point blank if I thought the DBS was helping me at all. For whatever reason, I hesitated, but in the end concluded that yes, it was helping. However, there was that hesitation. Maybe it had to do with the fact that he’s never come right out and asked me that question before. DBS helps, but it’s not the miracle I was looking for, that much I’ll admit. 😉 Dr. T’s running out of options (he said so himself) and I’m running out of patience (with myself, not Dr. T.). It’s been three and half years since the deep brain stimulation surgery. While I haven’t gone up to the highest stimulation point nor have I gone down to the lowest stimulation point, options are dwindling. I told Dr. T. that “playing” with the settings was fun the first year and into year two, but now – now I just want to set it and forget it. I don’t want to play anymore. There are still options, they are just getting smaller. I asked what it would do to me if I went all the way up to the highest setting on the DBS. He said I’d probably get symptoms of my hand drawing in or maybe my vision would be affected, however nothing that would kill me (and everything would go back to normal if I adjusted the settings to what they were). 😉 He suggested that if I did that, I do it over a weekend or a period when I don’t have to go anywhere. I couldn’t do it last weekend and can’t do it next weekend, but who knows, maybe the weekend after, I’ll try it. Another option is physical therapy. I’ve done it before and it helps, but I always get to a point where the physical therapists have taken it to their limit and can’t help much beyond that. A third option is taking a medication to help with spasms, which I’ve done in the past as well. So, the appointment left me feeling kind of sad – not mad, just sad.

During the appointment, Dr. T. asked about physical therapy. He said that he was starting a pilot program just that morning with his Parkinson’s patients and how they react to certain physical therapies. He asked if I’d like to see the physical therapist that morning. I’d be her first patient and he said it was free 😉. I said I’d see her, so he led me over to where she was set up. To get to that room, we had to walk through the waiting room to the other side of the building. He was leading the way but was also talking to me. I had to tell him to slow down (walking) if he wanted me to walk with him – haha! He saw my “real” walking and not just walking down a hall with walls I could potentially grab ahold of if need be. There were also a ton of people in the waiting room by this time that I had to walk in front of, so he really got to see my walking. In fact, he said, “I’m going to walk behind you so I can see you walk. I know you hate that, but still.” The physical therapist confirmed everything I was doing was correct. She gave me some new exercises to do and some tricks to help with spasms, so I’m glad I went. I can do the exercises at home. Dr. T. also wrote me a prescription for another drug to help with spasms and said I could use it if need be but didn’t have to take it if it made me too sleepy or gave me other side-effects worse than the symptoms. He also increased the electricity I was receiving to one notch higher.

But, all day Thursday, I was just in a sad/melancholy mood. I must keep things in perspective though. While at the neurologists, there are these big signs on the doors that say, “MS Clinic”, Parkinson’s Clinic”, “ALS Clinic” and Huntington’s Clinic”. That in and of itself is sobering. Those diseases are much, much worse then what I have. (There’s also a sign for “Movement Disorders Clinic – that’s mine, in case you were wondering. 😉 ). I also saw a girl with a prosthetic leg – again way worse off than me! But, even with knowing that I was in much better shape then probably 95% of the people in that doctor’s office, I couldn’t shake my sadness.

I was still feeling sad on Friday when I went to yoga, but then my yoga instructor snapped me out of that mood. I told her about the appointment and happened to mention that before the DBS surgeries Dr. T. had asked me what my expectations for the surgery were. As clear as day, I remember telling him that if I could just walk with a cane (instead of a walker full-time) then I would be overjoyed. My yoga instructor told me flat out that I have exceeded my own expectations for myself. I should be proud. On the other hand, somewhere along the line, I wasn’t just pleased with being able to walk with a cane. I wanted complete freedom. So, I ditched the cane and life was even sweeter, but then, once more, I wasn’t pleased with just being able to walk assistance free, I wanted (want) to be able to walk without any issue whatsoever. So, in a roundabout way, I’m causing myself to be sad by putting unrealistic (if only for the time) goals on myself. The surgery did what I initially had hoped and prayed it would do – it allowed me to walk without a walker. That conversation with my yoga instructor left me with a whole new perspective. I have exceeded my own expectations. I should be proud of that, but now I want more and am not satisfied with the original goal. I feel like that’s life in general too. Once we reach our goal(s), we create a new goal(s) and until we reach that new goal(s), we’re not satisfied. There’s a fine line between being realistic and being complacent. I don’t want to be complacent, but maybe I should be more realistic (and content), but then again, I dream big. I always have. I believe in miracles.

I'm not sure how theologically sound this is (I do walk with God!), but I get its message and I love it.

So, all of that happened last Thursday and Friday and by Saturday I was ready to have fun. My aunt, uncle and cousins are down from MI with their boat (we celebrated my grandmother’s 93rd birthday on Sunday). My favorite thing to do on the lake is to go tubing. It’s the perfect balance of, “I’m going to die.” to “This is the most fun ever.” I absolutely LOVE tubing and got my chance on Saturday. It was the best way to rid me of sadness. It was a blast! I also enjoyed great quality time with family. Somehow having little nieces in my life always, always puts me in a good mood!

Sometimes it’s hard to be happy when you’re dealing with something chronic. But God didn’t promise us that we’d be happy all our lives. Yes, I let sadness creep in for a bit this past week, but in the end, joy won out. That’s life. You’ve got to take the good with the bad and let God do His thing in you. I’m still navigating life challenges (as we all are) and finding out that life is so much sweeter when I put worry aside and let God be in control. After all, God’s Got This!

I'm still in training with this, sometimes it's very, very hard!