|| Joanna's Story|
In 2000, I went to a dermatologist to tell him that my right index finger gets cold and turns blue off and on. I also mentioned that both my hands seem to get colder faster than normal and it took longer than normal to warm them up. He asked me if I had pain. I did not. Then he said it was most likely Raynaud's phenomenon, and if it does not bother me too much, don't worry about it.
Then in October 2001, I went to my regular general practitioner doctor for cough I had. After he examined me he shook my hand he notice how both my hands were cold and blue. He asked what was going on. I told him that happens sometimes, especially when I get nervous. Sometimes being at a doctor's office gets me nervous. I also told him they get cold and blue a lot more frequently. I am a flight attendant and 9/11 just happened. I knew the Captain that went into the first tower. So, I was in a little more stress than normal. At that time my doctor felt a blood test was warranted. I told him I went to a dermatologist and he did not seem concerned. My doctor was shocked at his attitude, and definitely wanted a blood test to see what could be going on.
I wasn't expecting anything to come of it. I was working and dealing with my cold hands. Kept on playing phone tag with the doctor's office and finally found out the results of my blood test. At first they told me that they suspected I had lupus. I was mortified and very upset. I heard of lupus and knew it was not good. I called all of my friends that I knew in the medical field and asked them about lupus. Nothing sounded good.
I was going to an acupuncturist at the time and told her. She admitted it wasn't good but she would work with me with vitamins and herbs and it will be a help. Then she added well at least it's not scleroderma.
I went to follow up with my GP. He then ordered another blood test to confirm results. The next test indicated scleroderma. I was not feeling terrific after remembering what my acupuncturist had said. My GP recommended to me to see a Rheumatologist. When I had the appointment the rheumatologist confirmed the diagnosis of scleroderma and all I saw on the doctor's face was pity. That scared me. She told me there was no cure and not much they could do for me except give me drugs for my pain. I told her I was in no pain. Then she suggested to go on prednisone for the swelling in my hands. She wrote a prescription for the drug. Then wrote a prescription for me to get a heart and lung test. She also gave me a small folder on explaining what scleroderma was and what to expect. Before I left her office I told her I would not go on prednisone and I knew that prednisone could do damage to other organs. My mother was on prednisone for a long time and her other organs took a toll. I did do the baseline heart test and lung test and they were not horrible so I was not disturbed. Then this doctor told me she wanted me to come in every three months for a blood test. I asked her why because she'd already told me that there's nothing she could do for me. She said she just wanted to monitor how I was doing. I then asked her she was going to pay for these blood tests. Well of course she said no. She said it would help for her records. I then told her I was going to an acupuncturist and she said fine do whatever you can. Then she suggested that I go to UCLA to a doctor that she said had more information than her. I made an appointment with Dr. Philip Clements. He looked over my files in my records and for the first time I felt a little relief. Actually he gave me a little hope by telling me he felt mine was minor criteria but only time will tell. He looked at my nail capillaries and felt they were within normal limits. He said that was a good sign. My husband and I were more encouraged. Dr. Clements says something about three levels of stages and if I stayed the same for about six years it might not progress. I also told him that I was going to an acupuncturist and asked him what he thought. He told us to do what ever helps an admitted there is not much out there about it.
I looked on the Internet to see what they had about scleroderma. Everything I clicked on was so depressing. I was not under read negative things about it, I did not want to go down that road.
I continue to see my acupuncturist Jeanne and she did research on her own. Following Chinese medical information told me of foods that I should avoid to eat. I was able to follow it pretty well for months. And I saw her at least once a week. We did not see any improvement. Then she said she knew of another acupuncturist that specialized in skin problems. I went to her and she gave me some lotions. I use them and there was no results. Then she called her Chinese acupuncturist teacher who had helped many people swiftly get better in many areas. I went to him and he said he would resolve my scleroderma in three months. After three months I got no worse but I got no better. I went back to Jeannie who I was more comfortable with. I noticed that Jeannie was more passionate on trying to get help for me. Her research was exhaustive. She was also working with other issues of my health concerns. I had faith in Jeannie because about five years previous she got me off of antidepressants. I was very depressed after my mother passed away. After going to a psychologist and psychiatrists for years they told me I'd probably be on medication the rest of my life. Jeannie said that did not have to be an asked me to give her two years to get me off medication. I was off all drugs after one year thanks to her. On the onset of my depression I immediately went into menopause. This was very uncomfortable but she helped ease the sweats and the flashes. So I have every reason to trust her.
I was still flying and working a full schedule with as much of overtime I could to pay for all this. Not much was or is paid for by insurance. Then I was trying to exercise to keep my circulation going and of course my body in shape. I've taken many vitamins and herbs, homeopathic medication but it was hard to get the right balance. While working I tried to keep my hands warm by holding warm plates or mugs. Then I found these camping hand warmers I'd always have in my pocket. My hands were dry and kind ofscaly so I've always have lotions with me. My right index finger started to crack and bleed.It hurts because of the cracks. I found many Band-Aids to kind of hide the cracks. But now that I look back must of looked real geeky. I did the best I could to be normal and actually I felt I was.
While I was on the airplane working,one of my fellow flight attendant friends asked me why my hands were blue. I told her I had scleroderma. She commented that she just read an article in the Southwest Airline Magazine that there was a place in Reno that treats patients with scleroderma. It was called the Sierra Integrative Medical Center. The next trip she got me the article. I was hot to call them to find out what information they had. Previous I never saw any information for any clinic that's specifically mentioned treating scleroderma. I made an appointment and my husband and I trotted up to Reno. When we arrived there were many people with different illnesses and all ages, some people in wheelchairs. My two hour appointment with Dr. Wong lasted about four half hours he was very thorough and explain a lot. The first thing he did was take blood test. Thank goodness I was a little familiar with alternative medicine. He had a machine that I can only describe as a kinesiology machine. You held a metal rod in one hand and he used a mental pencil to push points on my fingers on the other hand. It measured if things were good or bad for me. If you did not have an open mind and a desire to search for a cure or relief I'm sure most people would run out of there. The next day we got the blood test back. It indicated that I also had Lyme's disease. They said the first thing on the list was to detox me. Then he went into another room where there were many recliner chairs. Everyone was lined up to get their IV'S. I was not used to needles. They also found out that I had toxic levels of mercury and lead in my system. To add to the list they discovered I had many allergies to foods. I had shots to boost my blood. I had shots to detox my metals. And I had shots to balance my allergies so I would not have allergies. But they still were concerned about my purple hands. Also I was prescribed lots of vitamins of many types. They tried I isolating hyperbaric oxygen just to my hands and that did not work. There was also a room that you sat in for a few minutes that had a very Star Trek looking machine that was supposed to kill bacteria in your system. I stayed up in Reno for six weeks straight to detox and get results. When the blood tests came back I did improve slightly. I cannot say that I did not see miracles happen there. I saw people that were confined to a wheelchair and in six weeks saw them take their first steps in years. But for me no great results, no worse but no cure. I did keep the shots up at home. I learned how to give myself injections and I was giving myself nearly 40 injections a week. I did this for about a year and a half. It was very expensive, I try to forget but we spend about $30,000. I decided with my husband then maybe we should take a break from that.
For a few months I didn't do anything but then I knew I had to do something if I wanted a life in retirement with my husband without living on drugs. Went back to Jeannie for awhile and she got me back on track with vitamins again. Then once again on the airplane was talking to another flight attendant who had an autoimmune disease. She went to Whitaker Wellness in Newport Beach, California. At least this place was closer to me. Whitaker was also integrative with regular medical doctors and usage of alternative medicine. They also used IV with highly concentrated vitamins and such. The doctor that I made an appointment with was a woman, are Dr. Sima. She is very informed and really knows how to read a blood test. She is very open to all types of alternative medicine. Plus they do work with a few scleroderma patients. What I found most helpful there is their hyperbaric oxygen tanks. I was told you cannot isolate hyperbaric. Your whole body goes in one large unit and you stay in there for about an hour. I did see results in my circulation and energy however it was not lasting. I did 10 treatments and while I was doing the treatments it lasted . But once I stopped the effects faded. When they did IVs with me it was difficult to find a good vein after I did so many in Reno. What I did learn in Reno was there was a machine out there that could test what vitamins would work better with me. I wanted to find that machine so I could use it at home to find the best vitamins and supplements that would work for me. I did try to research on the Internet anything pertaining to muscle testing or kinesiology. Finally I found a machine. It was made in Germany and it was expensive. Then I try to order it anyways but the US government was not allowing this machine to enter into United States anymore.
One day when I was searching the Internet trying to find an alternative kinesiology machine I found a site that mentioned kinesiology. It was not the first one on the last I just randomly clicked on. That day I found Dusty's place. I started reading her site and it was very positive. More hope was given me. I just did not have to deal with my condition but I could be cured. Of course I wrote and called and then made an appointment with Angela. I'm happy to say that all the weird stuff I went through to get here has paid off. She and Dusty have condensed my treatments and remedies to a workable and affordable routine. I am just a few months into my healing and I feel positive that my cold blue tight hands will be a thing of the past. Not only am I treating my body but I am learning more about my mind and soul. I have never been so happy. My husband and I are looking forward to a healthy and active retirement. I've looked over what I have written and there is lot more to this story but to me these are my highlights. It's time to move on. Happy healing to all. Joanna
May 8, 2007