My name is Susan and I had been a nurse for 25 years when I was diagnosed with diffuse systemic scleroderma at age 43. It began with Raynauds phenomenon and a facial rash. Little did I know what would follow. I began have pain in the tissues of my right knee, and then it moved to the left knee. I had swelling in my hands and feet and remember constantly icing them as I tried to continue working. Then the tissues of my inner thighs started burning and I felt like I was on fire. My hands turned into claws and I could not do the simplest of tasks. My skin hardened from bottom to top and it was like being in a straight jacket. My husband would massage me and chase this insidious hardening around my body. My friends and family scrambled to find help for me. It was one of these friends that diagnosed me through research on the Internet.
This friend was also able to pull some strings to get me into a certain specialist, as there was a three-month waiting list for a consult. My friend’s diagnosis was confirmed during this visit at UCSF (University of San Francisco) in June of 1999.
The choices of treatment from this facility at this time were, D-Penacillamine, minocycline, or a three-day high dose of dexamethasone, which would supposedly snap my body out of the downward spiral it was heading in to.
I did the three days of dexamethasone as recommended by the specialist. Unfortunately, I crashed afterwards. My thinking was foggy and I felt like a guinea pig. Bedridden, completely exhausted with a burning facial rash, I was very ill. So ill in fact, that I felt I was dying at this point. My husband thought this as well and he would fearfully check on me to see if I was still breathing.
The UCSF specialist didn’t believe me over the phone and didn’t see me until my local doctor hounded her with repeated calls. The treatment for my face was minocycline, so I started the oral antibiotics along with IV antibiotics as suggested on the Internet by the Road Back Foundation. I would travel from San Francisco to Idaho where my sister physically cared for me, and my brother-in-law, who is a doctor, gave me the minocycline IV’s. The skin on my abdomen and inner thighs started softening a few days into the IV treatments.
Upon return home, a local friend of mine, a nurse, would give me the IV’s at home and taught my husband how to give me the infusions. I was also doing alternative treatments; energy work with my friend, and I started taking Tibetan herbs after a visiting monk assessed my condition. Working with a Naturopath in Idaho, I tried acupuncture, supplements, homeopathic remedies and essential oils. Daily visits to a hot tub helped relieve the tightness in my skin.
I have so many people to thank who helped me through those first couple of years and I believe all of these treatments saved my life as my health had been rapidly declining.
In 2001, I met up with a group of women in Santa Rosa who had scleroderma as well and started a small support group. Until then, I had yet to meet anyone else with the disease. All the information I read about the disease depressed me.
After a year on antibiotic therapy, I had to stop. Lab tests showed that my liver enzymes were elevated. At this time, extreme fatigue and depression brought me to the point of being suicidal.
I decided to start doing some mind-body work in March of 2002 with a local doctor doing research on chronic illness. I still continue to work with him today.
In September of 2002, I saw a rheumatologist who put me on medications that helped control some of my symptoms from the Raynauds phenomenon, acid reflux and whole body pain. My weight also stabilized after losing 30 pounds the year before.
In December of 2002, Kimberly “Dusty” Leal, was the guest speaker at our support group meeting. It was very exciting to meet someone who had overcome systemic scleroderma. Kimberly discussed the eighteen-month program that she developed using the methods that brought her back to optimum health. She is dedicated to helping others follow in her footsteps.
I decided to give it a try. In August of 2003, myself and two other women, started this holistic, individualized program working with Kimberly, Angela a Traditional Naturopath and a medical doctor involved in this program. Angela Burr-Madsen helped Kimberly in the latter stages of her recovery.
We meet monthly with Angela and she uses kinesiology to assess us. Additional support is provided through weekly phone contact with Kimberly, regular visits with the medical doctor and our own fun support group meeting through Dusty’s Place. Our physical condition is also monitored through blood work that is done regularly. This program is a 100% commitment and hard work but so worth it!
I have changed my diet to accommodate my blood type, detoxed using body wraps and homeopathic remedies, added supplements and have used flower essences. These are adjusted on each visit. We do frequency work, emotional clearing and repatterning work among other things.
I have come a long way in the past 13 months and have shifted my negative attitude to one that is positive! From wanting to die, I now look forward to my future. There has been a momentum that continues to build and I see myself getting stronger. The fatigue, Raynauds and acid reflux have improved immensely. The mobility and softness in my hands has allowed me to play the piano again. We are working on the crippling neuropathy in my left leg that caused me incredible pain, hopelessness and crutches to walk. I now have actually had a nine-month period without the neuropathy!!
On the Fourth of July, my husband and I were able to walk the mile uphill and back from our cottage to an ocean over look. I had not been able to do this since 1998. I am not alone on this journey!
Another positive change has been in the results of my laboratory tests. Having tested positive for antinuclear antibodies, my index has been steadily dropping
while involved in this program. I believe that I can be ANA negative someday!
I look forward to the monthly visits and seeing the improvements that the other women are making. People now say to me that positive changes can happen with scleroderma without doing anything, but to have THREE people making such huge strides has made a believer out of me. To have someone hold the focus for me that I can be healed is the greatest gift and I look forward to my continued recovery. I am grateful to Kimberly and Angela for all I have received.
I have learned many new tools that I will use for the rest of my life.