Wednesday, March 24, 2010

Welcome MS Bloggers to the Community

Hello, I am Paula, your helper, and I will be sharing my journey with you, as we both discover how to turn our MS Scars into Stars. I was diagnosed with Multiple Sclerosis in 1989. That was the biggest day of my life and the most frightening. Although I did not know what Multiple Sclerosis was I knew from the concerned look on the doctors' face it was not good. And as so many of us when we get a diagnosis we sit on the edge of our seat waiting for the plan of treatment to make it all better. But, much to my surprise, there was no cure for my illness. This wasn't a cold or flue, it wasn't going away next week or like chicken pox leave a scar that would fade away in time. This was permanent and it was going to be with me the rest of my life in some form or another. That was a shock, to put it mildly.

So, here I am today some 20 years later. I can tell you that MS has been my sometimes very cruel constant companion. However, I have learned ways to live with MS, even as my physical condition changes. I am not just existing, but living with MS triumphantly turning my "MS Scars Into Stars!"

So today is day +58. Nearly two months since my transplant and closing rapidly on the 60 day mark (which some would arugue is the most critical recovery period prone to infections). Total recovery of my immune system will stretch out to a year (I will explain further later in the posting), but it can be argued that the initial most critical time has just about passed. The next most important time to stay alert is until six months out. And then the last phase out to one year. After that (and some chilhood immunizations) I should be home free in worrying about possible infections.

As I had mentioned before, I'm glad to be back at home with my wife and son. Seven weeks away from Riki was a long time. In fact, of all the discomfort of the procedure that I had to endure, not seeing my son for seven weeks was the hardest.

Not a whole lot happening this week. Lots of flowers blooming since Spring has sprung. The magnolia tree is about finished and the Texas Mt. Laurel with its grape bubble gum smelling flowers is in full bloom. Blue Bonnets are blooming as well. Gorgeous. Louisiana Iris are next with the Indian Hawthorn. Am taking a ton of photos. Most of them are posted on my facebook page.

Gardening in the sun is probably my highlight. Planted out my herb garden with Parsley, Sage, Rosemary and Thyme.. hmmm sounds like a song, if you are old enough to remember it. :)

Also planted dill, fennel, basil, Russian tarragon, and a few hot peppers. I grow and dry the hot peppers then grind them into powder and use in Mexican food dishes and as a counter irritant in hot tea for sore throats. Along with a little ginger to cool the heat.

If all that the Liberation treatment does is STOP my MS from progressing, I will be the most grateful person on earth. If it gives my body the opportunity to heal in ways small or large, I will have won the lottery. Thank you Dr. Zamboni for giving me hope, and Drs Tornatore and Neville for giving me the opportunity to make my hope a reality. A little background: dx RR in 1990, only residual complaint from initial exacerbation was fatigue until 1999 2nd exacerbation. Beginning in 2000: 4 yr Avonex, 2 yr Rebif, LOTS of 'roids, 3 yr Ty, 6 mo. Zenapax. Liberation 3/3/10! At Lib EDSS 6.0. biggest probs: fatigue,spasticity in legs, balance, walking. Use cane out of the house, Segway for longer trips- like to the school bus stop!

1 comment:

  1. I am hoping to receive the Liberation Procedure....In fact I recognize the names Tornatore and Neville. I hope to receive the treatment at the same facility. I would really really like to know how the treatment works for you so I have left my email address below.