losing patience

I'm sitting here at the computer, two hours after my injection, with an "only now starting to dull" pain in my right arm. I am losing patience with my injections. I'm starting to crack.

I have an appointment with my MS doctor on October 22. As I understand it, this appointment is a sort of "check in/check up" on how I am doing, and in particular, how I am doing with my medication. I guess that you could also say that it checking in on how my medication is doing with me...is it doing what it is supposed to do?

Tonight I realized that I may not be able to go 21 more days without some official check-in, or words of medical experience and knowledge regarding my medication situation. You may remember that I was told at the beginning of my injections that the "uncomfortable reactions" would subside within 6 months.

I am at the beginning of week 30, and I must say, week 29 was the worst. I had four consecutive days of post injection pain and welts - four days, four different welts. The pain is difficult to describe - but I imagine that it is similar to having layers of skin torn off.

I'm thinking that I might phone the MS clinic tomorrow and let them know about my daily trials, and that I am at the point where I dread the needle. My body, and this foreign substance called Copaxone just can't get along. In the evening, I postpone getting out the icepack - I just don't want what follows. I did have a moment - September 16 - that I was finally pissed off with the situation, and announced to Jason that I did NOT want my needle that night.

After realizing that I should make the clinic aware of my pain, I started to doubt myself.

Am I just being a wimp? Is it really such a big deal? If the medication is working, are two hours of pain, in a day with twenty four hours, worth it? What if I stop the medication, and the next day would have been the day that it doesn't hurt anymore? What if the side effects from a different drug are worse?

Well, I'm off to bed...

Emily

a change to Emms' Bits

I have recently become aware that readers have made comments on some of my posts, and for some reason, I have not received them.

I don't know why this is, but I have made a change that may help. You will no longer have to enter the security letters in order to submit a comment.

I hope this helps!

Emily

a celebration of life

Jason, his dad, and I attended a "Celebration of Life" service this past Tuesday evening. A friend of Jason's passed away at the age of 26. Prior to his death, we understood that David was suffering from an inoperable, non-cancerous tumour in his brainstem.

Approximately one year ago, Jason and I ran into David at his place of work. As we strolled down the soup aisle at Sobey's, we heard,

"Hey Emily! Hey Jason!"

I raised my head (at this point in time I was walking around with my head down, watching every step) towards the voice, and had no idea who was standing in front of me.

"Hey Dave." Jason responded.

David and Jason had curled on the same curling team, and when not on the same team, at the same club. David proceeded to tell us how he had been sick lately with hydroencephalitis, and that he would be returning to his neurologist because he hadn't be feeling so hot for the past week.

So David and I exchanged neuro stories, and concluded that I was in a worse off position than he was. That would be the last time we would see David. David would enter the hospital shortly after that, and to my knowledge, not be out of some level of care facility for his remaining year.

We would receive phone calls from David, and get updates from various sources along the way. When David would call our house, looking to speak with Jason and I would answer the phone, he would always ask me how I was doing. He was quick to point out the advances in MS, and all the experimental drugs that are out there.

The celebration on Tuesday shed a bit more light on David's situation. He had been sick for some time: his mother told us that he in fact had a disease similar to the elephant man, but on the inside...neurofibromatosis*. The family was grateful to the neurologist who demanded prompt care for David two years ago, and thus extended David's life.

*1 in 4000 people suffer from NF-1 and 10% of those suffer from NF-2 With NF-2, masses grow in the central nervous system, in particular near and around the brainstem.

The Celebration of Life for David was void of any flowers, or large photos of David. From what I could see, there was neither an urn nor a casket. The church, however, did overflow with people. We had to watch the service from a live video feed in another room.

So you are probably wondering why I am choosing to share this with you. David was known for always asking you how YOU are doing. David himself was "as good as could be expected", but "how are you?" is what he wanted to know.

And on a day that was for celebrating the life of their son and brother, David's family, whom I have never met, asked me how I was doing..."You have MS, right?"

wow. We can learn so much from one another.

Emily