Heres my story. This is where my motivation come from. Resorting to a healthy lifestyle is a non-negotiable for me.


I’ll start my story 5 years ago. A single mom of a wonderful 10 year old girl and caring for a 73 year old uncle while holding down a career with a major bank working 40-45 hours a week. My career was really beginning to blossom. I was leading my market in production and developing a solid customer base; little did I know this was all about to change. As time went on my work hours didn’t change but how I was feeling was. I would have this incredible fatigue while feeling flush with a slight fever daily before I would get to my lunch hour. I would struggle to make it through each day. I would get home and literally pass out and do it all over again the next day. I also noticed some swelling in my joints and some lesions on my back or head or arm. My first thought was “maybe I just need to make sure to get a solid night’s sleep”. I started to really pay attention to my sleeping hours and make sure that no matter what I would get rest. Nothing changed. I still had the incredible fatigue and lesions with swelling.

I vividly remember when it was time to get to a doctor and figure out what was going on. I was attending a meeting and walked from the parking garage to the conference room (maybe 100 feet plus elevator ride). During the meeting I just felt awful; so tired and my legs and feet were really hurting. I couldn’t understand the meeting was first thing in the morning. I hardly did any activity and had a great night of sleep. As the meeting was ending I was leaving the conference room and my feet were in such pain I could hardly walk. My ankles were so swollen; the size of grapefruits ? ? I didn’t twist my ankle, my shoes fit fine …. I was scared.

Doctor visit after doctor visit for the better part of 2 years and nothing was diagnosed. There was no explanation of what was happening and why. Finally I was referred to a Rheumatologist who was committed to finding out what was happening. More tests, more blood work, and more Biopsies. First it was thought that I may have allergies. Then it was thought maybe Lupus. I was trying different medicine and treatments; nothing was working. I was continuing to have lesions, fevers, extreme fatigue and swelling and it was getting worse. I now was missing some work due to trips to the ER to deal with the discomfort from my symptoms. This all was taking a toll on me emotionally. My daughter couldn’t understand why her mom slept all evening and night or that her mom couldn’t even walk around the mall without having to sit down to reduce the pain / swelling. I was at the point that I was out on short term disability with my job and something had to change. I wanted my life back.

I made the decision to commit myself to doing whatever I needed to do to figure this out. I made the decision to find a solution then to dwell on my problems. I would research what ideas Doctor’s where putting out there on the web. I would take pictures of my symptoms and write down any details into a journal. Through my research I found that some of my symptoms were similar to CAPS (cryopyrin-associated periodic syndromes) type of afflictions. Talking more with my Rheumatologist we decided to test me for any of these diseases.

One test came back positive. Muckle-Wells Syndrome !(MWS) I know, most people say “huh ?” or “what?”. Here is the best description I can find:

MWS is a rare autosomal dominant disease caused by a defect in the CIAS1 gene which creates the protein cryopyrin. This protein is partly responsible for the body’s response to damage or infection. During these states, a chemical called interleukin 1â is produced by an immune cell known as a macrophage. This chemical interacts with a receptor on the surface of other immune cells to produce symptoms of inflammation such as fever, arthritis, and malaise. In MWS, the increased activity of cryopyrin leads to an increase in interleukin 1â. This leads to inflammation all throughout the body with the associated symptoms.

I was now committed to finding out more information. MWS is VERY rare (literally 1 in a million; about 300 cases in the U.S.), there is no cure. Without treatment MWS can cause life threatening kidney failure, vision loss and progressive hearing loss. This disease is chronic, but there are treatment options. Together we reviewed my history and reviewed my pictures and journals to find out some way to help improve my life quality. From my journal we noticed that the better I ate, when I would have some amount of exercise and having the right amount of rest ….my symptoms didn’t appear to be quite as uncomfortable. I saw what I needed to do: “OWN this disease – NOT let it own me”. I learned about eating better and exercising the right way. I put together a plan to manage each day to get the most out of it that I could. My daughter was going to understand that her mother will overcome this obstacle. She was going to know that no matter what I will succeed; nothing will stand in the way of my quality of life. To be a great Mom – To be a great woman.

At this point (about 2 years ago ) my Rheumatologist did some research and found out that there is a case study at the National Institute of Health (NIH ) for MWS and they were interested in accepting me into the trial. I learned that there was a treatment option that was being used by the 30 or so MWS patients from around the world that was suppressing many of the symptoms I deal with each day. I went to Washington DC and was accepted into the trial. After some time NIH was ready to start me on this daily injectable called “anakinra”. This medicine was having great success in some patients; allowing them to live a normal day and life without symptoms! I was so excited. I was dreaming of no more lesions, fatigue or swelling. Just to be without this and enjoy each and every day … The WHOLE DAY !! There were side effects to consider. Being a daily inject able, injection site reactions are always likely for about 50% or so of patients. Of that 50% about 5% could have SEVERE reactions. I started the trial at NIH under observation for the first 4 days. It was going well. I was able to gain 3-4 hours of really great quality of life without any symptoms; then I would decline and feel like I was accustomed to. I went home after the 4th day looking forward to a great positive change in my life. On the 5th night I had extreme pain in my legs, my skin felt tough like leather to the touch, I was red all over and had extreme pain and swelling. I was in the 5% that would have severe reactions. This treatment option wasn’t for me and I was back to dealing with all my symptoms each day. I was devastated. I thought to myself: “This will be my life the rest of my days”? Really? NO… “I will OWN this disease, IT will not OWN me”

I regrouped with my Rheumatologist and really committed to doing what I could do. I planned out my meals. I planned out my rest. I planned out my exercise. I was going to become stronger physically, mentally and emotionally. I was going to do it myself! My Rheumatologist would still be working on other treatment options. In the meantime I was going to do what I have to do. I was eating the best that I could, exercising as best as I could and resting best as I could. Because of this, I was getting stronger and was able to make it through days better than before. My life was slowly improving. My body was fit and stronger. My mind was more determined than ever, my esteem getting stronger. I am learning to own this disease and become a fighter, not letting it own me.

Recently My Rheumatologist recommended that I try a weekly injection called Arcalyst. I have begun to take this weekly injection to help treat my symptoms. This is the 6th most expensive medicine in the U.S. The weekly copay is about $4,000. Thank goodness for the Arcalyst foundation which is covering the copay for me at this time. I still deal with swelling, fatigue, and lesions; but I’m managing them the best that I can.

Another battle that I have been waging since I was in my early twenties has been chronic basal cell carcinoma (skin cancer). This has been an ongoing fight for me over time. I have had 6 surgeries to date. I continue to treat my skin twice a year with a topical chemotherapy (Fluorourcil). My family has had skin cancer on my mother’s side. My grandfather and my mother have had surgeries to remove cancer cells. I have been working with a skin surgeon and my rheumatologist to plan out the best way to have this addressed with my disease. MWS complicates any major surgery due to the severity of inflammation, weakened immune system and the recovery process.

The third major medical fight that I am in is with severe arthritis and bulging discs in my neck and back. Twice a week I get therapy to help cope with the discomfort that I experience. MWS amplifies this to a great degree. It’s vital to continue to have open communication with all of my doctors to make sure that my treatments are always taking into account how MWS will effect treatment.

5 years ago I would be throwing in the towel; 5 years ago I would be paralyzed with fear. NOT NOW, NOT TODAY. I am educated about my disease. I have learned to manage my life, set an example for my daughter and inspire other woman. I am a strong woman now. I made the choice to change my life. I CHOOSE to succeed, I CHOOSE to get back up if I get knocked down. I CHOOSE to own this disease.
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Its a great place to share inspiration. The process in motivating and inspiring others is a non negotiable in the fitness industry . we all have goals and stories to share.
Birds of a feather flock together!