Letter to God

Dear Heavenly Father,
I wanted to start by thanking You for all the miracles in this world that we often fail to see.  I try to remember that sometimes we are blind to all the wonders that You have surrounded us with.  I ask that you help open up my eyes so that I don't lose sight of everything that You have given us, as well as the greatest sacrifice You gave through your son Jesus.

I wanted to ask you to give knowledge, wisdom and insight to the medical providers who take care of those people with Multiple Sclerosis.  Help them find a cure for this ravaging disease.  Help them understand that each person with this disease is just that, a person.  Help them see us for who we are and not the label of the disease.  Help them treat us as such. 

There are so many people who are struggling with coping with MS, I ask that you give each and everyone of them, including myself, the perseverance we to overcome the obstacles that come in our way.  I ask that you give the caregivers, loved ones, mothers, fathers, sisters & brothers the patience and understanding to help us through this.

I can not imagine all the struggles that you hear about on any given moment of any given day.  Today I just wanted the world to know that I am asking you for all of the above as well as help in understanding how I am going to help others when there are times that I can't even help myself.  Please give me guidance.  Please help me heal both physically, spiritually and emotionally from what MS is doing to me.  Please heal others who are suffering as well.

I love you.

Lisa

Pain

Pain has been such an issue lately.  I hurt from head to toe.  I was or am weaning myself off of the amytriptilline, which I take for pain control, but I hurt so bad.  It's weird how this pain is so different than the pain you experience when you stub your toe or a paper cut on your finger.  My pain is aching, flu-like pain.  Also just my husbands touch on my arm sends off intense pain signals.  I don't know what to do.
I think I may increase my dose again, but I am nervous.  I think this medicine might be the cause of my "seizures" that I was diagnosed with last month.  I have to choose from the lesser of two evils I suppose.
Today I went outside and tended to my flowers. A few years ago my flower garden would have been so full of beautiful blooms.  This years garden looks very sparse, sad and pathetic, but I need to keep whatever I can going.   After the sunset, I pulled  a few weeds, and now I am completely wiped out.  My pain is everywhere now and so intense.
Maybe, one day I will have a beautiful garden again.

http://www.youtube.com/user/pianki?blend=1&ob=5

Avoidance

MIA for a while.  I have been avoiding my blog because I don't feel particularly inspirational at this point.  Having a bad few months and can't seem to climb back out of it fast enough.  2 day stint in the hospital where I was diagnosed as having seizures on top of everything.  They started me on a seizure medication Keppra where I was supposed to take 500mg twice a day and then after 2 weeks move up to 1000mg twice a day.  Well I took it for a week and a half.  Let me list the side effects and you can deduce why I stopped:  Weakness, dizziness, drowsiness, loss of balance......  Everything I already have plus 10x worse.  I could barely walk a few feet without losing the ability to lift my legs up very well.  It sucked.  Haven't told my doctor this yet.  Not looking forward to that.


Where to find inspiration.  I am at a loss.  I seem to be knocked down a lot lately, but never knocked completely out.  I get back up, but with a lot of help.  My husband is the love of my life.  He stands by me.  He hugs me so tight through my tearful sessions.  He opens doors, holds me up, goes out of his way to make sure I have everything I need.  I could not be any more blessed.  Loving husband, wonderful family and kids, friends whom I may not see very often, but I know they love me as I love them.  The good Lord whose faith in me never waivers even when mine might falter a little.  Well I guess there is the inspiration I was looking for.  Sometimes I try to look so far ahead that I fail to see what is already here.


Still it is so hard not to ask why me?  I am not old.  I want to be able to do everything like I could before becoming "sick".  I love summer, but don't get to enjoy it.  Heat makes all the neurons go hay-wire and can't function.  I want to walk around the neighborhood, but can't.  I want to hike in the mountains, but I can't.  I want to be a floor nurse, but now am confined to an office (grateful to be able to work, even if it's only for a few hours).  I know that I am supposed to focus on what I can do, but it's hard not to miss what you could do.  I want this all to be a bad dream.  Somebody pinch me and wake me up.  I don't like this.  I actually hate this.  Cruel cruel disease.


Well that put a damper on things now didn't it.  What's that saying?   Hope springs eternal.


http://www.youtube.com/watch?v=1CSVqHcdhXQ

pondering

Hmmm.  I am trying to figure out a correlation between my periods of sick and environmental factor.  I have gotten colds that don't really present like colds.  I get a low grade fever and then muscle aches, very slight cough.  Every time my MS symptoms go crazy, I have these "colds". 
I am also wondering about spatial orientation and  balance.  When I am at home, I can walk better for the most part.  My balance is a little better.  When I go out into any kind of public place it seems my world because more topsy turvy.  Almost like sensory overload.  I get dizzy when there is too much going on and I am easily overwhelmed.
Then there is multi tasking.  It seems not to long ago I could do multiple things at the same time, no problem.  Now I can barely focus on one simple task.  I can't sing and type.  Weird statement, but I noticed that today. 
Then there is the memory.  I am so forgetful.  I have such a problem with remembering the simplest things, like turning off lights and forgetting to actually turn on the washing machine.  I have been forgeting to put laundry detergent in.
BTW, my little dramatic moment is quite over.  I am almost back to my previous baseline which makes me happy.  I am feeling well enough to go with my beautiful daughter tomorrow to find her very first prom dress.  I am very excited.  I hope I can last the whole waiting for a teenager to actually make a decision on her dress.  Oh boy.  I am already tired just thinking of it.
Hope that everyone out there with this disease finds their peace.  Today I have mine back.

http://www.youtube.com/watch?v=Dn7pWm4i0ZU

new Rx?

Scripps closer to multiple sclerosis knockout



Published on April 18, 2011 by admin · No Comments

By Jeff Ostrowski

Palm Beach Post Staff Writer



JUPITER — Researchers at Scripps Florida say they’ve found a way to stop multiple sclerosis in mice.

In a study published this week in the journal Nature, Scripps scientists say they’ve developed a compound that stops MS by knocking out TH17, a type of white blood cell that malfunctions in patients with MS and other autoimmune diseases such as rheumatoid arthritis and lupus.

If it works in humans, the new treatment, known as SR1001, would have a couple of advantages over existing MS drugs, said Tom Burris, a professor in the Department of Molecular Therapeutics at Scripps Florida.

First, it could be taken as a pill rather than injected. Second, the compound would attack only TH17 cells while sparing other disease-killing cells.“Right now, the treatments that are out there suppress the entire immune system, and that comes with a lot of side effects,” Burris said.

It’s unclear whether the treatment is a cure or simply stalls the disease, he said.

An estimated 400,000 Americans have MS, according to the Multiple Sclerosis Foundation in Fort Lauderdale. MS, which prevents nerve cells in the brain and spine from communicating, is most commonly diagnosed in women between 20 and 40.
“The hunt for a new MS drug is very urgent,” said Kasey Minnis, director of operations at the Multiple Sclerosis Foundation. “There’s no medication that’s super-effective in all people with MS.”

The new treatment is promising enough that it has garnered interest from drug companies, Burris said.“We have a lot of interest from biotech and pharma companies, and we’re trying to strike a deal with someone,” he said.

Scripps could license SR1001 to one of those companies within a few months, Burris said.

TH17 cells produce interleukin-17, a natural molecule that can cause inflammation.

“In these autoimmune diseases, the body is tricked into attacking itself,” Burris said.

When scientists blocked signals from the TH17 cells in mice, their MS disappeared.

Dr. Daniel Kantor, an MS specialist in Ponte Vedra Beach, said the treatment could work, but he also urged caution. MS is so much easier to treat in mice than in humans, he said, that researchers sometimes joke that rattling the cage will cure the disease in laboratory animals.

“Even if it’s really going to work in the end, it will take years before it’s used in humans,” Kantor said. “Animal data is different from human data. Until you have large human studies, you never know.”

Scripps’ work was supported by National Institutes of Health grants totaling $3.6 million.

 Article source: http://www.palmbeachpost.com/money/scripps-closer-to-multiple-sclerosis-knockout-1408926.html?cxtype=rss_money_16350