Jennifer Clifford's road back

[jlc6166]

Hi All!

    I should have written this long ago but I have been waiting to see what the end result would be but I finally realized that my story will continue as long as I am here and that I should just write this and edit later if anything new and exciting happens. 

     I have been fighting Scleroderma since 2005, although I didn't know what it was back then.  I am a runner and have been a runner for many years.  In 2005 I had increased my running in order to train for a marathon.  I ended up in the hospital with shortness of breath and chest pain.  The doctors were dumbfounded and after a week of tests with no answers the pulmonologist who was seeing me decided that I was bringing all my problems upon myself.  He sat down in my hospital room with me and my husband and proceeded to tell me that I was a type A personality who was anxiety ridden and doing this to myself.  He said that he was sending me home with a prescription for Xanax that he highly encouraged me to use . 

     I was absolutely embarrassed and inconsolable.   I wanted to lock myself into a room and hide.  It took about 3 months after that incident to feel well enough to start running again.  Lucky for me my primary care doctor didn't think I was type A and she treated me for asthma.  I was relatively fine for the rest of that year and the next.  In the fall of 2006 I ran my first Marathon in Detroit and fell in love with the distance and running in races so I ran my second Marathon in the spring of 2007.  I was training for my third marathon in the fall of 2007 when I finally had to admit that there was something wrong with me.  I was still having chest pain and shortness of breath.  I was having problems with swelling and joint pain as well as some tightness that I was feeling in my face and arms and legs.  I also ended up with extremely high blood pressure.  I had always had Reynaud?s; but it became much worse.  I also was always exhausted and needing to sleep.  My husband also noticed that I wasn?t sweating after running anymore.  I could run 15 miles and not even break a sweat.  I thought it was great, but Jack was really worried.  I also found that I no longer had to shave my legs or under my arms more than maybe once a month.  I didn?t really stop and think about how this could be possible, I was just glad that I didn?t have to shave.  Now that hair is starting to grow back I realize that I had no hair on my arms, hands or face either.

     I started searching for what was wrong with me in November of 2007 and didn't get a diagnosis until April of 2008.  I changed doctors several times in order to find a doctor who believed that there was something wrong with me.  After the awful encounter with the pulmonologist years before and a bad experience with an endocrinologist around this time I had lost confidence in doctors and wanted to be treated by someone who would be part of a team that would figure out what was wrong with me and do something about it. 

     In the end it was my husband and I who researched my symptoms and figured out that I had scleroderma.  My NP felt that diagnosing scleroderma was out of her abilities so she sent me to a rheumatologist who upon her first visit with me decided that I had lupus and that was what she was testing me for.  Jack and I had to insist that I be tested for Scleroderma; she agreed but was sure I had Lupus. 

     I found out the results of the tests several weeks before my follow up appointment.  I was pretty upset about the diagnoses.  The more I researched scleroderma, the more freaked out I became.  I eventually went back to my rheumy and got the ?official? diagnosis from her which included a poor prognosis.  She thought I was heading downhill fast.   I left her office really upset and went home in search of an answer.  I ordered every book I could find on Scleroderma (which wasn?t many) and began to search the web for answers.  I was diagnosed with the ?worst? form of this disease, which is systemic scleroderma.   

     We talked with the rheumy about treatment options, at that point I was willing to try anything, even chemo drugs but she wasn?t comfortable prescribing me anything until she talked with her mentor (who happens to be backed by the drug companies who want to squash ap).

     I went home and while I waited for my next appointment I educated myself with everything I could find about Scleroderma.  It wasn?t long before the books I ordered arrived at my house and one of those books happened to be Scleroderma, The Proven Therapy.  Jack read it first because I was at work when it arrived.  I remember him calling me at work and telling me about the antibiotic treatment.  At first I thought he was crazy with worry and sleep deprivation.  I couldn?t understand how this AP treatment could work.  I placated him by telling him I would read the book when I got home.  I was very skeptical at first.  However after I read the book I was open to trying the treatment.  There were few other options out there for me to choose from, so I figured why not.  Antibiotics are a benign treatment compared to chemo drugs and experimental drugs that some doctors want to try. 

     The process of healing was so slow that at first I thought I was getting worse, and maybe I was.  Finally after changing from generic Minocin to brand Minocin and starting on IV antibiotics I finally started to feel better.  I got really sick in November of 2007 and was diagnosed in April of 2008 and finally started to feel hope in January 2009.  I started running again around this time.  I ran a half marathon in September of 2009 and thought that I was ?in remission?.  I spent days going about my life without even thinking about Scleroderma.  I began to doubt whether I even had the disease then in October of 2009 after having some issues with my breathing I was hospitalized (admitted) with shortness of breath.  I couldn?t even speak a word without needing to catch my breath. 

     Doctor?s couldn?t figure out what was causing it, so as usual they decided it was either due to meds or anxiety.  I was furious, hadn?t the doctor?s learned after the last time they told me I was anxious.  My primary doctor?s were all concerned although my pulmonologist tried to tell me that my lungs sounded good and he thought I didn?t even have asthma.  So I took a methacholine challenge and failed miserably and was ?officially? diagnosed with moderate/severe asthma.  However it took several months for my lungs to feel better. 

     I started running again in February 2010 and in March I ran an 8k.  I didn?t train well for the 8k and I didn?t feel great the day of the race but I wanted to run anyway because my kids and husband were running and I missed running.  I finished the race although I didn?t feel great when I finished and then I went home and went straight to bed.  That was on Saturday, I stayed in bed until Monday morning.  I wasn?t sure what was wrong, but the nausea and discomfort were severe. 

     I went to my routine doctor?s appointment on Monday and after evaluating me and running an EKG (which showed cardiac problems) they sent me via ambulance to the hospital.  The hospital ran tests and found that my liver enzymes were really high.  They admitted me to the hospital on the cardiac unit.  Because my liver was in trouble the doctor evaluated all my meds and tried to get me off from all the meds that were absolutely not necessary.  Before I went into the hospital I was on over 20 serious medications plus all the other ones and when I left the hospital I was only on 6 meds plus IV Clinda and an inhaler that I only used when needed. 

     I still only take 6 meds and am feeling good.  All my symptoms are gone aside from Reynaud?s, some swelling, fatigue, asthma and occasional joint stiffness.  Considering how sick I was I am really grateful that I chose to start AP.  I am really aware of how I?m feeling and if I feel like I?m getting to worn down or doing too much I make sure to rest and take care of myself. 

      In September of 2010 I ran the Rock N Roll half marathon for the 3^rd time and I hope that this becomes an annual reminder of my health. 

     I hope this gives you hope on your road back.  After 2 years on the treatment my husband and I are convinced that this is what saved my life.

 :roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh:

 

 

    

 

[Author]

Posts