All Journal Entries Journals

Forward bit by bit

Sep 01, 2010 - 0 comments

   Every morning I do a physical inventory.  How is my numbness, my sensations, my temperature?  One of the challenges of living with a chronic disease is that you attribute some of your aches and pains to that disease and not individual medical issues that have nothing to do with it and need to be addressed apart from it.   I am looking forward to the day when I just get up from a nights sleep without thinking about what's feeling normal and what's not.

  So far so good I think.  There is a very faint numbness still left on my right side but barely noticable.  It gets more noticable when I get overly tired or too hot.  What's with my heat sensitivity?  I use to be in the heat all the time with no ill effects, but now just after a few minutes I start to feel more numbness.  It is a mental thing or is this my new normal?  Perhaps a bit of both. Can't wait for cooler weather regardless.

  The main "new" symptom I have noticed from time to time is called l'hermittes symptom or sign.  It is basically an electical sensation in my spine that I notice sometimes when I bend my head down.  Strange I know.  It doesn't hurt and so far it hasn't been even too much of a problem, just a minor reality.  Apparently it can come and go. None of the symptoms I have are necessarily permanant but neither are they necessarily temporary.  That's the challenge of MS, you just never know when your world is going to change from one morning to the next.

  Night time I often have trouble regulating my temperature.  I go to bed with pj bottoms and an oversized top and socks.  Usually at some point during the night I shed the bottoms and sometimes the socks. Too hot.  It is still difficult to get more than 5 hrs of sleep even if I go to bed early or stay in bed late.  Still I don't push myself.  At lease until I get on DMD's and have some better idea of what my triggers are I am being careful not to exacerbate any of my symptoms.

  Speaking of dmd's (disease modifying drug), I got a call today from a perscription company saying that my dmd, copaxone has been approved!!  Yipppee.  9 days from diagnois and already approved for a drug that will be sent to me ups every month that costs upwards of 26K a year.  Wow.  Lot's of money.  Our co-pay is $35 per month.  There are programs now that help people pay for these drugs but that wasn't always the case.  I talked with a woman who has been on copaxone for 9 years and the first few years her out of pocket was about $600 per month.  Again, I seem to be on the cutting edge of the developement of drugs and how they are administered. It's all in the timing. What a relief getting an expensive, effective drug at a manageble cost.  That is a huge blessing!

  The challenge right now is that the nursing association that is suppose to show me how to administer the drug cannot come out to our house until next Tuesday.  No way I told them.  I am not waiting that long when the drug will be in my hands tomorrow.  I want to start tomorrow.  They told me they would call me back but honestly if they can't arrange it I will be heading down to my dr's office for them to show me how to do it.  Don't get me wrong, I am not anxious to start giving myself shots for the rest of my life but the benefits of taking this drug are so far superior to not (in my opinion) that I don't want to wait even for a long weekend when I don't have to. There are too many things I don't have control over, this isn't one of them.

  I had a wonderful conversation with a woman who my fil knows who was dx 4 yrs ago at the age of 33 with RRMS.  Her attitude was so refreshing!   Some tidbits she shared that I love are inform yourself but don't overdo it. There is so much out there about MS but a lot of it is so negative and focuses on things that may never happen to you.  The mind is a powerful thing so don't put negative stuff into it.  She highly recommends copaxone and went over her little tricks to make the injections easier.  She mentioned that everyone has at least one trigger with an flare up and that I need to find out what that is and avoid it like the plague even if it means cutting people out of my life.   Life, she said will get back to normal if I allow it to, and taking my meds will be like brushing my teeth.  People will ultimately respond differently to my dx and that I need to be prepared to tell people that their response isn't appropriate if they act as if I have ALS or a terminal illness. The waves of panic will subside and I will recognize that life once again is more focused on the moment rather than the what ifs.  When I mentioned the l'hermittes symptom, she said, "So you probably keep dipping your head down to ck and see if it's still there, huh?"  Yes, I said. She said, "Stop doing that!!!!"  After a while of not dipping her head her symtoms went away.  Good advice. So, if you see me trip from time to time it's not that I am losing control of my feet, it's that I am not looking down at where I am walking!

  All in all, today has been productive in so many ways. Lots of things done with little stress and less a feeling of things being out of control.  And the things I did today are all moving me forward. Nothing on the calendar as far as the kids school goes so it looks like a family dinner at home tonight.  Maybe a movie too.  Yippee!  Too many blessings in my life to count at the moment. Thank you God!

Post a Comment