From M.E. back to "me"

   Ok, so that was the short version.

 

Here's the whole story. Myalgic Encephalomyelitis  as it was originally named, is a systemic illness that affects nearly every system in the body. I won't go into all the details here, because this is my part of the story, but its thought by some experts to be caused by a virus or some environmental cause. 

   Like many sufferers, I can remember an extreme flu-like illness that lasted an unusually long time when I was a senior in High School. I eventually recovered, but never felt the same energy level I once had. I had moments of dizziness and near black outs, but never knew why. In my early 20s I had a relapse that put me in bed for weeks. It was impossible to drag myself out of bed. I went to the doctor and after the standard battery of tests I was declared healthy and was told maybe it was anxiety and offered medication. I was pretty sure that wasn't the case, but I tried the pills for a while and didn't feel any different, so I stopped them.

   I eventually got better but again, not to the level I once was. Typically, each relapse left me with a little less energy than I had prior to the relapse.

   In 1999, I was pregnant with my son. The pregnancy was hard on me and I slept all the time. I started having tachycardia, vertigo and black outs. I eventually was put on bed rest for the last 4 months of the pregnancy. And in March of 2000, after 36 hours of labor, I gave birth to a beautiful healthy boy.

   From that day on, I had a never ending, but ever changing group of symptoms, but fatigue was always the predominant one. The tachycardia and light headness was second. After that it would rotate through GI symptoms, PMS, migraines, allergies, skin issues, muscle pain and weakness and more.

   After a decade of doctors not taking me seriously, thinking I was exagerating, faking or depressed, I finally met a doctor who seemed to really care and listen. I was there for a cough, but the way she sat down and looked me in the eyes and asked if there was anyhting else she could help me with, made me decide to give it one more try.

   Soon after I went back for a new appointment, armed with my medical history, a long list of symptoms and some research I had done on my own. She listened, read through my notes and sent me for more tests than anyone had before. When it was all done, I went back for a follow-up and was told I had ME/CFS and dysautonomia. I felt this huge weight leave me at that moment. Releived to have somone validate that I was not crazy and what I was feeling was very real.

 

   SInce then, I have been fortunate to work with a group of very caring doctors. But sadly, there was not a lot conventional medicine could do to releive my symptoms. In the meantime my life was getting harder as a result of my symptoms.

 

   Let me backtrack for a moment. 

 

   I had been working at a job that I loved since 1997. I worked at a local camera store (which is where I met my husband) doing photo restoration, manipulation and graphic design. It was a great place to work, great boss, great co-workers, and a fun satisfying job which was also an outlet for my creativity. 

   I was a hard worker, extremely motivated, but my health (which I hid at this point, since I had no diagnosis and even doctors were not taking me seriously) was making it harder and harder to do my best on the job. Getting out of bed became difficult. Making it through the work day was exausting. I pushed through and would collapse when I got home. Eventually after my son was born, I started asking to reduce my hours, using motherhood as an excuse. 

   FInally, in 2005 I was able to work out an arrangement to start myown business, esentially doing my exact same job, for the same store, but as my own boss, making my own hours and from my home. It was perfect. I was able to fulfill all my resposibilities while pacing myself around my energy level each day. I was even able to homeschool my son during this time, which was a dream.

   Sadly in 2010 things took a downward turn. Getting through the day got harder and harder. Then, in mid 2011 my husband and I had a long and serious discussion about my ability to continue. The heartbreaking decision to stop working was made. I did my final job on September 30, 2011 and began the process of filing for Social Security disabilty in November.

 

   The disability process is agonizing when you have whats considered an "invisible" illness. I was denied, appealled, had a hearing, denied again and am now in the process of another appeal and also a new application. To date, that over 3 years without an income. But meanwhile, I'm learning a lot about the disabilty process for those of us with ME/CFS.

 

   Since 2011, I have been homebound because of this illness and for the past year, mainly bedridden. 

 

   My family is amazing. My husband does everything. Working a full-time job, has a photograpgy business besides, does all the cooking, errands and household chores. I worry about him, he's exausted and works form morning till bed everyday. My son is very helpful, and for a teenager, rarely complains. My in-laws also help with grocery shopping.

 

   Since, as I mentioned, there are no real cures or definitive treatments for ME/CFS in conventional medicine, we have turned to alternative treatments. After much research, I settled on the Gerson therapy. The science behind it makes sense to me. And it's the only treatment that I have read about others with ME/CFS being cured completely. 

   Unfortunately, it is a very intensive therapy that takes 2 to 3 years and is not covered by medical insurance. Add that to having our income cut in half and it's really put a strain on us financially. If we thought we had any other option, we would (and probably already have) tried them. Although we continue to investigate other options and may talk about them here also.

 

   Thank you so much for your interest in my story. As I develope this site, I will tell you all about ME/CFS, the Gerson therapy, other alternative treatments, disability and more.

 

   And please, check out my fundraising page, where we are selling items to raise money for treatment or you can make a donation. Any little bit helps and is greatly appreciated