Just over a decade ago my MonSter took me down and I left the work force. I didn’t just fall apart and accept that life would continually get worse, as too many with MS are told. I took a hobby and with some education became a fine art photographer. The MonSter kept limitations on my life but I tested those boundaries frequently. I budgeted life and gave the lion’s share to my children. Determined to make their life something they could enjoy looking back on, not something that focused too much on Mommy’s illness.
I struggled with hope. Often. Probably daily, as many MSers do. Hope is generally defined for us as not ending up in a wheelchair. But the day following Thanksgiving in 2009 I was given a glimpse of what was real hope! That hope took some time but turned into a very true reality. Thanks to the love a man has for his wife, I finally was given real hope to beat my MonSter. Dr. Zamboni of Italy, whose wife was diagnosed with MS, finally made a breakthrough in MS. He furthered the vascular connection to MS by finding that blood refluxes into the brains of MSers. He called this condition CCSVI. The treatment for this, as with every vascular abnormality, angioplasty. It took me 5 months until I had my first procedure, one of the first 100 treated in this country. I had a total of 3 procedures. My final was performed by Dr. Salvatore Sclafani in Brooklyn, NY, January 2011. It was that final procedure that resolved all of my vascular issues and left me completely free of the MonSter’s daily grip.
The MonSter had been vicious through the years and I was left with scar damage. That scar damage is what led to my disability. It had significantly impaired my frontal lobe brain activity. Back in 2013 I got to see the visual reminder of the scar damage in my brain. It was staggering to me. Though I always knew about it, I guess I envisioned a few small spots in one area of my brain. The reality were several large spots in my frontal lobe and 2 other spots in 2 other areas of my brain. Even though my final CCSVI procedure left me free of all the pesky daily symptoms of the MonSter, I didn’t have real hope of being free of the results of scar damage in my brain. I still held onto hope that eventually there would be something available to help beat that.
Last spring, I started to realize that I wasn’t having as many issues cognitively. I tested myself with adding more to my plate. I did the most with managing Sean’s band. I wasn’t dropping the ball on anything. It felt awesome! I started to talk to my dr about the idea of returning to work. By summer, I started looking. I took a couple of jobs that I could get. The most fun had been bartending. I love it. Especially because it allowed me to see how much my memory recall had returned to normal. Recalling names, drinks and faces. May not seem like much to many, but this is beyond huge for me! And socially, it was such a great fit for me.
Tomorrow is a great day for me. I’m not just starting a job to have a job, I’m returning to a career. I’m returning in great shape, better than I have been in a very long time. I no longer have MS, I don’t have anything lingering from MS that will hold me back. No more. I beat this MonSter!
My original intent was to just write a simple post to say I’m starting a new job tomorrow and I’m excited. But to all of my fellow MonSter family you know that this is so much more than that! This is huge! Please, all of you, don’t give up. What I fought for, this procedure, it isn’t readily available to everyone with MS. There has been so much controversy created around this because it is a threat to a $13+ billion a year industry. That is what MS has become, an industry. Don’t let it. Continue to fight for this procedure, get this procedure! Don’t believe that this is some scary, potentially deadly procedure. That’s what they want you to believe! It isn’t. Know that this very same procedure is done on a daily basis for a variety of health conditions.
Most commonly dialysis patients. Understand the reasons why this procedure didn’t seem to work for some, the simple answer, probably because not all of the issues were completely treated. Some drs use more advance technology and can find harder to dx issues. Some drs take more time and are more thorough. Some issues are more stubborn and need repeated procedures. And unfortunately some patients have such severe issues, a catheter cannot get into the vein. No catheter, no ballooning. Don’t give up, insist on furthering the medicine. Vein grafting or whatever, push the drs to advance the medicine. Despite the controversy, there are still the great drs that aren’t backing down. They created the ISNVD. Support them. They are in it to end our battle with the MonSter and other illnesses.
Above all else, even though this illness can be bleak, don’t give in…
Wish me luck!
Denise Graff (reproduced with permission)