Thursday, June 30, 2005

9 Days After Diagnosis/ Expectations

Current Meds:
1. Prednisone (12 tablets {60mg} in morning for 2 weeks then 4 tablets {20mg})
2. Citalopram 10mg once daily
3. Lorazepam 1mg at bedtime

Current Symptoms
Physical: fatigue - mild
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: rapid pulse, aggitated, headache, slight fever

Well it has been just over a week now since my life-changing diagnosis. I wanted to talk about a few things that may be of interest to other newly diagnosed MS patients. Because everyone deals with things in different ways, I figure a report on how I'm actually doing, plus what is going on medically and how I handle that stuff is a day or two overdue.

First I'll start with the medical stuff. A week after diagnosis, I have been reading avidly on the topic of my disease and educating myself about the treatment options. I've been studying symptoms, treatments, theories about MS, etc., just trying to become an expert on the topic. I still have a long way to go but what I have learned in such a short period of time makes Dr. Pettigrew's class look like an intro course (sorry Todd). All the information I have been digesting has been graciously provided by the MS clinic at the Regional Hospital in Sydney. They've given me booklets, zines, videos, and disc's. Just tons of information, some of which I have published on this blog.

At my clinic meeting yesterday I introduced my support team (my mom and my girlfriend) to my MS clinic nurse. It is a good idea to get friendly with the people who you are planning to have help you. I have selected people close to me to go through the training process of injection in case I need one of them to administer my injection should the need arise. I was also sent for bloodwork, which I just returned from, to check liver functioning, as the injections have had some small incidence of liver problems (for those who may be interested they were checking CBC, Diff., TSH, and liver Function). The incidence of liver problems is so small in fact that I'm not really that concerned about my liver malfunctioning. The treatments seem safe enough to me. I'm actually looking forward to starting them, which won't be until mid August.

Mentally, my entire focus in the last week has shifted. Everything I do now has some purpose, even if I'm just closing my eyes for 5 minutes. The first 72 hours after diagnosis you begin to see how many lives you have an effect on. All week I've been checking my e-mail 4 times a day, and usually finding new e-mails from people I havn't heard from in some time, and answering the phone to hear familiar voices giving me some encouragement and someone to talk to for a few hours at a time. It is so good to see the outpouring of support. I'm trying to respond to everyone's e-mail but my eyes are so sore its hard to type back to everyone.

Another thing I've been finding is that there are three main reactions from people who you tell about your MS: 1 "Oh my God! Are you ok? .... What is it?" 2. "Oh my God. I'm so sorry to hear that. If there is anything I can do... just ask me, ok?" 3. "I'm shocked. You know, so-and-so-related-to-me has MS, if you need someone to talk to..."

These are really bad paraphrases but that's mostly what I've been getting from very concerned and helpful people. A lot of people will ask how I'm handling it. I find that difficult to respond to becuase I feel so driven that I think they wouldn't believe me if I actually told them that if it wasn't for the stupid medication side effects nothing would be different physically (save for the blindness). The blindness was slightly better this morning. Its been almost 2 weeks of darkness for my left eye and this morning I was able to see big shapes through that eye, like my bed, and my window and my hand when it was close to my face. Still pretty far away from details peeking through the haze however. I was able to drive the car this morning as well, from sobey's to home; hey you have to eat! I'm not walking with 200$ worth of groceries in my arms.

I guess the bottom line is this: I feel good about myself for the first time in a long time. I have seen where my strengths are: in my friends, my family and deep, deep inside of me is a huge soul that won't ever quit. I have moments of sadness but they are so short they hardly qualify as moments. Being able to function through this has showen me how far you can push yourself if you need to. The human body is tougher than it appears and the human spirit is like hardened steel, supporting the body, when it is alive and well. I meditate everyday and I do several relaxation and breathing exercises to control my body rhythms--as a result I haven't had a panic attack in 3 weeks. I feel balanced and alive. I'm seeing lots of people, making lots of new friends, and reaffirming old friendships. Life is great! Enjoy it!

2 Comments:

At 9:23 PM, Blogger Louisa said...

See? i told you you were well- loved:) I knew that once the shock of your diagnosis started to wear off a little bit you'd dive into this challenge just like every other challenge I have seen you face over the last 4 years (yes, we've known each other that long!) If anyone can kick this diease's ass- you can!

 
At 4:47 AM, Blogger Iain Dughlais said...

Thanks Louby!

 

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