Yesterday, starting at 8:30am, was a combination of phone conference and migraine day. One leading into the other. My first phone call was, for the most part, the only pleasant one all day; a client letting me know he was putting his manuscript and payment in the mail, always a good thing. He is always wonderful to talk to so it was a good start. Sadly this was not the theme for the day as a phone conference with a disability attorney did not turn out to be good news.
“There is nothing I can do to help you.” was the general consensus. I am under 50, not able to be vocationally rehabbed as I am a working freelancer, and the one therapist I need is considered alternative medicine (which I knew).
Several years ago I had gone to Shands at University of Florida after a client of mine recognized that I had Lymph-edema. A hair dresser, he had referred me to one of his clients, Vanessa, who specialized in manual lymph drainage; basically a (painful) form of therapy where the lymph system is manipulated via massage. Instead of calling her, I went to Shands to seek verification first and, ironically, they referred me to the same person. Shands had wanted me to come to them two hours a day, 7 days a week, for therapy which I was unable to do at the time, so I asked for a referral in our area. Shands is an hour north and we had one car at the time as well as a small child. They referred me to Vanessa who, I was told, was reputed to be one of the best in the Southeast for MLD and Shands sent their worst patients to her. (Comforting thought.) Vanessa was a Godsend and I wish I had been able to afford to continue seeing her.
Being self-pay was/is difficult, as I know it is for a lot of people. The health care system here is broken, not a new topic. My next step was to call Shands, which I did, and again not good news.
“We don’t accept self-pay from Marion County.” Even with cash-in-hand to pay IN FULL they refused to allow me to make an appointment. In my opinion ridiculous but I am sure there is some “logical” reason for it outside my understanding. So. Square one. Fundraiser time.
Vanessa is $70.00 per visit, IF she can help me. It has been four years since I have seen her and I have not been wrapping during that time. I went through a severe depression where the only thing getting me out of bed was my daughter. After that I threw myself into my art for a period of time. Both were blessings. My daughter is my “bestest friend”, as we say, and my partner in art.
If Vanessa can see me, I hope to find a way to do five (5) times per week, ideally. Inside of a month I could be back down to where I could actually exercise, be in compression stockings, and fighting strong to maintain which is something I will be doing for the rest of my life. Doing five sessions a week would accelerate the results and help me get through it in the off times with my sanity intact. (I know, I know, I had to have had it first.)
I am thankful to be blessed with a good support group, something I didn’t utilize as fully as I could have before. Val, my incredibly supportive boyfriend, is learning the massage necessary for me to maintain when I am not with Vanessa. My daughter is ready and willing to help me untangle and roll miles of compression bandages, a process that is repeated several times a day. And friends who aren’t afraid to kick me in the butt or head, whichever works better, sometimes both.
This time around I am fueled by anger and disgust for a health care system that looks down on alternative medicine instead of embracing it for its benefits and for doctor’s that rest on their routines and no longer research causes. My lymphatic system shut down during my pregnancy and I spent five years going from doctor to doctor. None of them knew what I had, continuing to treat me for “water retention” and, in the meantime, making my condition worse.
Lesson learned. I am on my own now. Thank God for hairdressers that pay attention.
Let the bake sales, eBay auctions, and Etsy stock begin!