Friday, May 14, 2010

WOW!! It's Been Quite A While!

I can't believe how long it's been since my last post. I can barely get to the sites I love to visit in a day so I rarely get a chance to blog anymore.


No such luck with significant relief. These days, I'm a happy camper if I can get the pain level between 7 or 8, on a pain scale of 1 - 10. Almost 4 years since being diagnosed (Aug 28, 2006) and I'm still waking up with level 10 - 10+ every single day. Unfortunately, the only way to stop this would be not to sleep overnight and that is not a potential solution I wish to venture into.

In February, I was given a prescription for Fentora. It's a medication used to treat pain in cancer patients. The insurance company denied it so we thought all else was lost. It cost approximately $660 for this medication and there was no way we"d spend that much without knowing if it would work.

Well, at my last pain management/physiatrist appointment (May 6th), the doc provided me with a voucher to submit with the Fentora prescription. This voucher allowed the medication to be free. I've tried it when the pain level has been 10 - 10+, and very little relief from my daily medication regimen. It has lessened the pain AND spasms. It's still not lower than a 7 or 8 but I'll take that over 10+. I've gotten so use to being in such extreme pain that a 7 or 8 is a blessing. I always use icepacks throughout the day because it provides short relief and numbs the area.


Speech Apraxia: This started sometime around November 2009. It was initially a very scary symptom. I didn't want to talk because I sounded crazy.
  • There are times when these strange words come out that make no sense at all, it sounds more like gibberish from a baby.
  • Then there are times when what I'm trying to say is not what comes out. The whole sentence is switched around and out of order, making it difficult for others to understand what I'm trying to say.
  • There's also an issue with pronunciation. Many words are very difficult to pronounce so when the words are spoken, again, it's difficult for others to determine what word I'm trying to pronounce.

The good news with the speech apraxia is that I've had time to work on the issues that I can. It's not something that's easily done, it really depends on the situation and group.

New, Painful, Spinal Sensation: There are already times when I' experience very painful sensations in my thoracic spine. Then there's the painful sensation that feels like someone is trying to yank my spine out. I've recently started experiencing a different type of painful sensation throughout my thoracic spine. All of these types of sensations hit fast and hard, but thankfully they don't last very long. They're strong enough though, to cause me to yell out from the pain, then they're gone.

Head Tingling: This sensation of head tingling occurs all day, everyday. The only thing that changes is the area of the head in which they occur. They're not painful, however, they are quite irritating. I wonder if it's a feeling I'll ever get use to. I've mentioned this irritating tingling to all my doctors but not a one has said what could be done about it. So, I guess this is yet another symptom I just have to get use to.

If I've forgotten any new symptoms, I'll include them in the next update.


I had a lumbar puncture/LP (spinal tap) done to release CSF pressure in hopes that my vision would get better. Amazingly, it did get better. Unfortunately, the blurriness is returning, thankfully it hasn't reached the point it was at before the LP. The Evoked Potential testing was done last month. I'm waiting for a follow-up appointment with the second neurologist/NL (refferred by my current NL) to get the results of these tests. The Evoked Potential test includes 4 individual tests to determine how certain areas of the body are effected by certain stimuli. Waiting, waiting, waiting...................


I'm hanging in there. Previous symptoms still exist. I'm taking it one day at a time. Trying not to allow stress in my life. Participating in family events, outings with family and/or friends, etc., as my body allows. Most days are spent in bed. I get up in the chair but am not able to sit for long without the pain increasing. My focus is to do whatever it takes to keep my pain level as low as possible. However, I try really hard to participate in all family events. I worry about the pain later, what's a few more days in bed when almost everyday is spent there anyway.

I love the adjustable bed provided by my brother-in-law. It allows me to adjust myself in laying and different levels of sitting positions. I use my laptop when I'm able. Most times, I can only read, without responding. If I'm on Facebook, I love that there's an option to press the "like" button. When I'm not up to typing, it's perfect. It let's a person know you're thinking of them.

Life is good, GOD is great.

I hope everyone is having a fabulous day. I hope my ASAP family are all managing well. Please pray for all the members, including caregivers, at ASAP.


Kira said...

Sending lots of love and hugs.

Anonymous said...

thanks for sharing your blog Janice!!! Please know that I'm praying for you.
Lori Tutrow

Bonnie S. said...

I just read all of your blog and I feel like I've just read my own story. We are so lucky that our disease isn't terminal, in most cases, but no one really does understand the extent of the pain and awfulness of not being able to do the simplest of tasks without suffering for it. I never thought I would be unhappy about not being able to vacuum (: little did I know I was privileged to be able to clean my house. It is the constant presence of this disease that is so depressing. I hope your pain will lessen somehow, and thank you for sharing your life with SM, with us all. It really does help to know someone understands how I feel also. We have to continue to fight against giving in daily. Good luck and many blessings.