A personal account of my dealings with progressive multiple sclerosis. And my battle with trigeminal neuralgia and the brain surgery that stopped the pain!
Friday, March 13, 2009
Coping with the truth
Low burden of white matter signal abnormalities: My MRIS
I'd love to say that the worst is behind me. (No not my ever gradually spreading rear side); but the long couple of months of virus's, infections, and disabling fatigue.
Multiple Sclerosis is so different for everyone. And even though I've been diagnosed since 2003 and very likely been dealing with this disease process for a few years longer than that, I still tend to be in denial some. Because when I am not ill or hot I don't have many issues with mobility which is generally what one thinks of when hearing MS.
And I have this pride or self preservation hope that this isn't getting me down or gradually reducing me to less physically than I want to be.
Tuesday I visited my family Dr. because I wanted to know if I was over looking something besides MS bringing me so much fatigue and hence depression. Like say a thyroid condition or even some mono.
I told him I didn't want to miss something treatable because I happen to have this label of progressive neurological disease.
Well he sat me down after listening and going thru my e-room records from two weeks earlier. And he said "I think I know what is going on and I do believe this is part of your Multiple Sclerosis compounded with the fact that you have been knocked down with several illnesses recently- I think your immune system has just been run over and we need to give you a jolt" He knows I hate doing any steroidal treatments because of the side effects and the fact that they aren't proven to do any long term good.
However I was ready to do nearly anything to begin getting some strength back. To be able to count on myself and be able to do not just the things I need to get done as activities of daily living.. but also to resume doing things I enjoy without having to pay with an entire day in bed after.
Apparently my Vit B levels were low as well. I did not want to do IV steroids or a dose pack that begins with high levels of steroids and then titration down. So I got a shot in the bum that included some B12 and steroids. And am doing a very low dose of oral steroids for 10 days and taking a prescription B12 vitamin long term.
Tuesday I did not really feel better. Oh I was better to get ready and get to the 8:00 am Dr's appt. And did take Breanna to dance class. But as usual I was completely on the sofa by the time sweet Tommy got home from work and did not do anything more.
Wednesday I stayed on ECM (energy conservation mode) the entire day), as to be rested up for a dinner/seminar provided by our local Tri-State Multiple Sclerosis Association
Thankfully I was able to attend and enjoyed myself. In fact Wednesday night after getting home I was really wound up and had some trouble sleeping. One pharmaceutical tends to lead to another. So sleeping pills were necessary.
The title of this MS seminar was " How to know if my MS is worsening and what to do about it". A Dr. Berry Singer from the St Louis Comprehensive MS center was the speaker. I think some denial was removed listening to him. He had us consider how far we were ale to walk 1 year or 2 years ago as compared to now. Well.. remember I was a racewalker at one time. And last year I was still enjoying riding my bike and walking my dog through the neighborhood. Now I must utilize pushing the grocery cart when just trying to go to Walmart. Now I have Tommy drop me at the door of the store before he parks. When I walk my dog it is only enough for her to relieve herself and then we return home. So things have indeed progressed.
Dr. Singer has a nice website that is not particularly sponsored by drug companies like most. In particularly he has a nice short animated video on the front page I think is good.
Anyway to keep this blog from being a book. I just wanted to say that I am feeling more like myself right now. And praying to continue to have some time of constant "up" time.
It is so difficult to be self focused. There are so many folks dealing with much more serious things.
And what really convicts me, is that I know my adversary; the devil walks around seeing who he can destroy. And although I am confident that he has no claims no my soul and cannot take God's free gift of salvation away from me. He can steal my joy. And the joy of the Lord is my strength and my testimony. I rebuke you satan in the mighty name of Jesus. Lord keep me meditating upon Your word and those things that are lovely true and of a good report. In the midst of this perverse and wicked generation I pray You receive the glory due your Holy Name. I pray that my response to the trials of this life are acceptable to You and are used above all else to bring others in to the knowledge of Your saving grace. Oh how I love you my Lord.. the Lifter of my head!! Thank you for praying saints and the comfort and healing of Your Spirit. Amen.
- Love Jesus! Mac Enthusiast! Love all things tech!Married to high school sweetheart for 42 years!Multiple Sclerosis tries to get me down.Previous Trigeminal Neuralgia sufferer-successful MVD in Nov of 2006.Mother of 2 grown sons. GrandMotherGardener, Twittering Lady.
Podcast lover. Previous fitness instructor.. previous Childbirth educator, previous school bus driver, previous racewalker.Lots of previous.. but unending future! Gifts: encouragement, helps, discernment. Lover of People.Recently my youngest son 33yrs old- (now 37) was diagnosed with early onset Parkinson's disease- this is the toughest road yet. But by God's divine hand- we'll survive.____________________________I am exceedingly humbled that He knows me by name and actually died that I might live. And then He sought me out! This is joy unspeakable.___________________________Did I mention that I had an uncle named Steve ?