what was the cause of your ME?
I was diagnosed by the late Dr. A. Martin Lerner in 2014 after a severe ear infection that required hospitalization. After this infection, I became profoundly ill and bed ridden. After seeing many doctors and being tested from everything from Lupus to Lymphoma, I finally got to Dr. Lerner. He diagnosed me with chronic EBV, CMV and HHV6 viruses. I admired him so much and his passing was a huge loss for all of us with ME/CFS. I try to honor his memory whenever I can because he literally devoted his life to a patient population no one wants.
what were you doing in life prior?
I was a very driven, career oriented, active person. I was an advertising sales director/manager, I was also studying to become a lawyer. Before this, I also studied to become a chef. I had just gotten married. I loved to travel and was a vibrant and engaged person.
are there any enlightenments that came with this package?
It was very hard to accept my "new normal". I think for me the biggest loss for me was not being able to work any more. My work and my career was everything to me. When you suffer from this disease, there are many things you have to mourn. I have had to mourn the loss of my former self. I have had to mourn the loss of goals, dreams and plans. I have had to mourn relationships with people who move on because they don't understand or have the time to wait for you. This disease has taken a lot from me and on my worst days it feels like I am in a Dickens novel where I am visited by 3 ghosts and I can see life go on all around me and glimpses of the past and what would have been my future and I am unable to participate in any of it. It's very difficult to watch life moving on without you. I could say my "enlightenment" would be had I known this was going to happen to me.. I would have done even more with my life before I got sick. I am now also trying to find my new purpose in life. I need to have a purpose more than spending my life in pajamas and in bed. I think I am getting close to finding out what that is... I hope anyway.
what type of medical treatments do you receive from far left to right if any?
Dr. Lerner had me on the most aggressive form on Antiviral therapy there is. I was on Vistide/Cidofivir. This therapy was brutal however, it proved to be the most effective for me. Unfortunately in the middle of treatment (over 6 months of it) my platelet count became dangerously low and Dr. Lerner passed away. This protocol actually gave me some quality of life back but because it's controversial and dangerous; most doctors won't even entertain it. I am now with Dr. Susan Levine in NYC and I am on an aggressive dose of oral antivirals. I am going to be speaking to her about trying LDN. I also have to take pain management for the severe inflammation and pain in my joints and body. Sometimes the antivirals side effects are worse than the actual disease. I am pretty much willing to try whatever it takes to have some sort of normalcy in my life.
i see a cat picture on your Facebook page what does your cat think?
That picture is of my precious Gabby. She passed away 2 days after Christmas 2016. Gabby was my "soul cat". When I was in a bad flare or sick, she would never leave my side. She was amazing. I am tearing up as I write this because I miss her and her unconditional love. On days where I would be bedridden, she would snuggle up next to me and just having her near me brought me so much comfort. It was very hard to say good bye to her. But she was sick too and lived to be about 16. She was a good girl.
(sorry about gabby,she sounded amazing and i totally get the comfort that our creatures bring us)
lastly what thing do you do in life (could be the smallest tiniest thing) that makes you feel
“oh man I’m alive"
On those rare days where I feel well enough to leave the house.. I make sure I put on make up, try to make my hair look nice, put on a nice outfit. I was quite the fashionista before I got sick. I have a rebelious streak so, there are days where I get defiant with this disease. So, when I do these things for myself it's becauase I still have that hope that one day they will find a better way to manage this disease or even a cure. I dream of returning to my former life.
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