Saturday July 23, 2011

Hello friends,

This week has been full of surprises, both good and bad. So many thoughts are running through my mind. This might be a long one so please bear with me.

My frustration with my driving situation pushed me to call driver’s rehab and explain my concerns. I just cannot picture myself using hand controls for my vehicle. Anyone who has seen me over last few months can attest to the improvements I have made in my ambulation and endurance. Am I back to 100%, not yet, but I am getting pretty damn close! I felt that my reaction times were even more delayed by using the hand controls.  I also hope to be able to get a new car next year, so it wouldn’t make sense to make expensive modifications to my current vehicle.  I don’t want to wait until next year to start driving again. I may require assistive devices in the future, but that time is not now. I suppose I made good case because the driving trainer has agreed to another road test using the foot pedals next week.  I hope this will settle the issue and move me closer to independent driving.

On another note, I am really getting back into the swing of things at work. In my smaller coverage area, I think I am able to provide the level of service that I expect of myself. At the same time, I realize the burden that my presence places on the rest of my team. My assignment is smaller, but that does not change the number of units that need to be served. Someone has to cover the areas that I am not able to. When I am there, my teammates have to cover the portions that I cannot. I worry about the burden that this places on my team and the diminished level of service all of the other units suffer because the team is spread so thin. I am continually impressed by my team and their ability to accomplish so much with so little. I worry about them as well. I know all too well the effects of pushing yourself too hard for too long. I worry about how long things can continue this way.

 Our coverage staff have commented to me how difficult it is for one person to cover the units that I did. I don’t know if it will be realistic for me to take it on again, but I must be a glutton for punishment. Since I am using the cane pretty exclusively, I decided it was time to try the walk to the other unit I was covering. It is a rather long walk. Probably the longest distance I have covered since this all began. I have to admit it was extremely difficult and I am not looking forward to doing it again. I actually broke a sweat getting there. It seemed to take forever to get there and I had to rest for about a half an hour before I could even consider trying the trip back. I am still patiently waiting for my power chair to be approved and delivered, but last Friday the DME company told me it could take 3-6 weeks. I won’t even get into how I feel about that. But anyway, the next day the pain in my back and legs was far greater than I expected. I really wanted to stay in bed Thursday, but I managed to push through and go to work. I was very pleased with myself for getting through the day. I was even happier for the nap I took as soon as I got home!

MS has changed the way that I walk. It has changed the way that I use my muscles. It has caused my body to move in strange and unusual ways that it is very unhappy with. The more I move, the more muscle pain I have. The doctor has given me muscle relaxers, but I cannot take them while I work. On tough days, I have had to go back to my office to try to stretch and rest until the spasms pass.  The great thing is a good portion of my job can be done over the phone, so no one has to know. Today when I woke up the pain in my back was so bad I couldn’t get out of bed. I had to take a muscle relaxer and wait for it to start working so that I could get in the shower. But an amazing thing happened. As the pain diminished I was able to control my body much more easily and walk without the aid of the cane. It was so exciting. My legs are getting stronger and when I am not in pain I am able to walk quite well. It was so exciting, but at the same time very scary. I have to wonder if the only way I will be able to walk independently is with the use of medication. The idea of that reality is the furthest thing from independence that I can imagine. I guess I will have to wait and see.

The realities of coping with a chronic medical condition are starting to set in. I am very grateful to be an insured American. I don’t know how I would have managed without it. My health insurance has covered the VAST majority of my medical expenses. While only a relatively small percentage of my medical expenses are my personal responsibility, it still amounts to thousands of dollars. I am in most case only responsible for 20% of charges, but a single bill for my inpatient admission was a little over $18,000. Contrary to popular belief, social work is not an extremely lucrative profession LOL. Thankfully, I have been able to cover the costs so far, but the bills continue to poor in. I really have to work at this point. There is no other choice if I want to continue to take my medication and have the necessary therapies. The co-pay for my MS medication alone is $70. I can’t imagine how I could afford it without insurance.

Speaking of my medication, I AM SO SICK OF NEEDLES!!! The side effect that I was most afraid of, the flu-like symptoms, have not been so bad. I am really frustrated by the injection site skin reactions and pain. Each spot that I inject develops an itchy red rash and a hard sore lump under the skin. This lasts for well over a week. So at any one time 5 or 6 of my 8 injection sites are itchy and painful. A couple of aspirin usually take care of the flu-like aches, but nothing really helps these skin symptoms. The reactions on my arms are so bad my MS nurse has advised me to take my arms out of the rotation for awhile, leaving only 6 injection sites. I got really down earlier this week when I considered the fact that this is what the rest of my life might be like. I pray that the amazing research into the treatment and management of this disease continues. So much has improved in the last 20 years; I hope that in the next 20 years there will be other options available to me. But for now, just like tonight, knowing full well how awful it will be I will force myself to give myself the injection and be thankful knowing it will help me live a fuller more productive life.

New opportunities continue to present themselves to me and in spite of all the obstacles I face each day, I feel incredibly blessed. I don’t want to jinx anything, but I hope to have some really great news to tell you in the next few weeks. So please keep your fingers crossed and if you can see fit, say a little prayer for me.

By the way, I am hard at work on the permanent blog site Other Side of the Rails. I chose this title because my life will forever be changed as person, a professional and a care giver because of my experience on the other side of the bed rails. The transition from care giver to patient will influence the rest of my life. I am working on a way allow this blog to generate income so (a bit selfishly LOL) I hope you decided to continue to follow me there and share it with others!

Sorry to go on for so long. Next time I will tell you about Gizmo’s first shots. I don’t know who was more upset by them, him or me LOL! Anyway, thanks for listening. Talk to again soon!