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Great expectations...

I had great intentions of making it to the doctor’s office today for my lab work but it didn’t turn out too well. I had been feeling great only two days ago and even managed to take my new set of wheels (that you see above) for a spin down the hallway and back without feeling like passing out. It was a beautiful Sunday night with a warm breeze on the top deck of our parking garage. I was able to sit on the seat of my rolling walker and enjoy a little peace and quiet without a single mosquito bite. I looked out at the river and rejoiced in the fact that I had actually left my apartment for the first time in months and it wasn’t simply to limp to the car for a trip to the doctor’s office. I hated to go back inside.

I made the mistake of getting my hopes up. After three years of fighting this disease, I should know better than to allow myself to do that. You see, I just switched up my treatment plan AGAIN and after getting my Bicillin shot on Friday, I had been feeling pretty good all weekend. I was able to take a shower while sitting on my shower chair and I only had tremors like someone who was wearing a windbreaker in Alaska instead of someone who has Parkinson’s Disease. I was strong enough to walk to my kitchen to get my own Gatorade instead of feeling like I was a person crawling across the finish line at an Ironman Triathlon. I even sat in the living room to visit with my mother for more than 10 whole minutes instead of being sequestered to my dark and chilly cave of a bedroom because I wasn’t suffering from the heat and bright sunshine pouring through the windows. It was the best two days that I have had in a long time.

When I had the urge to go for a walk on Sunday night, I thought things were actually getting better. I let myself believe that the effects of the shot were going to last and maybe I was turning a corner. I should know better than that. I have done this to myself so many times with this disease and I really should know better by now. DUH. I was brought back down to reality today when I tried to walk the short distance to the car for a trip to the doctor’s office.

I had gotten up, changed my clothes, brushed my teeth, washed my face and pulled on the obligatory baseball cap without any indication that trouble lay ahead. I gathered my purse, my cane, my Gatorade, my lab forms and out the door we went for the appointment. My first realization that things were amiss was when I found out that Mom was not parked on the same floor that we live on. I had to walk down two sets of approximately ten steps and my legs were shaking terribly. Despite holding the handrail and using my cane in the other hand, I was concerned that the muscles in my legs would not hold up my body weight. I figured, “OK, you’re just really weak and this is to be expected. It will get better when you are on the flat surface of the next landing.” I made it down the steps and started to slowly walk down the hall.

As I made my way down the hall, the shaking didn’t stop and my heart rate started to climb. The weather here is very hot and humid right now which does not help with my POTS (postural orthostatic tachycardia syndrome) so any exertion makes my heart rate sky rocket and my blood pressure fall. I was only half way down the hall and I knew that I was getting into trouble. I started to walk slower and slower but I didn’t want to alarm my mother so I tried not to let on that I wasn’t feeling very good.

We were almost to the garage and I had to make a decision. I knew that we were only at the beginning of what could turn out to be a very long afternoon and I was having trouble just making it to the parking garage. If I couldn’t even get to the car, how was I going to walk into the doctor’s office, sit there for half an hour waiting my turn, get my blood drawn, wait for Mom’s appointment to be over, stop at the pharmacy to pick up my medicine and then make the long walk back to the apartment once we got home? There was no way that I could do this today. I had to call it off.

I turned to Mom and said, “I think you had better give me the keys to the apartment. I have to go back. I can’t do this.” Thankfully, my mother has been by my side throughout this entire ordeal so she calmly asked if I could make it back and we turned around and started back to the apartment. I stumbled a few times but she was right there for me to lean on and I slowly made my way back. I couldn’t help myself from crying tears of disappointment on the walk back to the apartment. Only 48 hours before, I was joyfully rolling down those same corridors rejoicing in how wonderful I was feeling.

She let me into our apartment, made sure that I was ok on my own and then she went to her appointment. I immediately hooked myself up to a saline IV to increase my blood pressure, then ran a magnesium IV to reduce the cramping in my legs and spent the afternoon on the couch in my cool and dark cave of a bedroom. I tried not to linger on the disappointment that I was feeling. There was no point in comparing what happened today to how I had felt two days ago. I know this disease so well by now that I know how I am feeling can change from hour to hour. Plans get ruined all the time. Appointments get cancelled at the last minute. Sometimes you just can’t make it to the car. That’s just the way it is with Chronic Lyme Disease.

I should be thankful that after three years of aggressive treatment and thirteen years of having these bacteria do damage within my body, I have never ended up in a wheelchair. I am one of the lucky ones. I have worked very hard to make sure that I don’t end up in a wheelchair. That is the one thing I will NOT allow. Even when I was bedridden for months on end, I always did exercises in my bed to keep my muscles working. I was fortunate that I was a figure skater and a competitive ballroom dancer before the disease seriously took hold of my body because I went into this with very strong leg muscles. However, it doesn’t change the disappointment I feel when I cannot walk 200 feet to get to the car.

Tomorrow is another day. Maybe I will wake up and my legs will be working fine. I can only hope that the IV treatments that I did this afternoon will have improved my blood pressure and I will be able to stand up and walk again. Living with this disease is only 25 percent physical and 75 percent mental. The physical aspects can be dealt with by medications, IV fluids and a whole list of other treatments to ease pain and suffering. It’s the mental aspects that can be the most difficult at times.

Learning to cope with disappointment, loss, despair, discouragement, sadness and the never ending rollercoaster of believing that you are improving only to decline once again can crack the most iron clad willpower of the human soul. I try not to get my hopes up when things are going well. I try not to feel excitement when I am having a good day because I never know how long it will last or if it will come crashing down even harder than before. It is human nature to want to rejoice when something is going well in our lives but for those of us with a relentless disease like this, getting excited about a good day can be the biggest mistake of our lives. To endure the ride of Chronic Lyme Disease, it is always safer not to have great expectations…

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