Friday, February 20, 2009

My Five Year Journey With Rheumatoid Arthritis

January 2004
Early in January when I went to sleep, I would wake up with a pain in my middle finger (same middle finger that won't give up the fight now). I kept going through my mind trying to figure out what I had done to damage this finger. It didn't make any sense.

Within the same month the pain of my middle finger moved to all my fingers and lasted throughout the day to the point that it was difficult to use the fingers and I could no longer wear my wedding ring on most days.

I visited my family physician and he gave me something for it. I don't honestly remember what. It didn't help though so I returned at the end of the month and he put me on Predisone and set up an appointment with the rheumatologist.

February 2004
The pain and stiffness of my hands moved into my feet and knee.

Although I had an appointment with a rheumatologist, it wasn't until April. I did receive the paperwork for my visit and began filling it out immediately.

February-April 2004
I read everything I could about rheumatoid arthritis and felt a lot of anxiety that this might be it. The stories I read were terrible. People explained going from drug to drug, the pain, the separation they felt from their family, loss of work, etc. I felt like I couldn't breathe when I read their stories and couldn't believe this same thing was trying to attack me.

April 2004
I reviewed my paperwork before seeing the rheumatologist and realized I had to change all my answers because since February my condition had gone downhill. I could no longer walk up the stairs without taking them one at a time and my shoulders and knees experienced numerous flareups where they would not move at all. I needed help dressing and performing other daily duties. I didn't understand what was happening to my body and went to bed each night with the home phone and cell phone on my nightstand in case I woke up and couldn't move in the morning. That was my fear - that I would wake up to a body that just couldn't move any more. This was a very scary time for my family and me.

The long wait to see the rheumatologist was not all I had hoped for. He had to do numerous tests and x-rays before making a diagnosis. For the time being, he kept me on Predisone for what he was considering mild RA.

My brother planted the idea of diet in my head. He knew someone who knew someone else who was following a strict diet with good results. I remember at the time believing it could work but also thinking I wasn't strong enough to follow something so extreme.

April-June
Completed blood work and x-rays and had a diagnosis of RA.

The idea of food healing me had grown. I read everything I could get my hands on in regards to food. The information was overwhelming. There were so many different philosophies. What I didn't realize at the time is that we are all different and because of that, what works for one person might not work for another.

June 2004
My body was quickly going down hill. From April to June it was worse. I couldn't run or skip with my young kids anymore which was a real blow to me and I had a huge fear of deformities. For these two reasons and the fact that just about everything I read online warned of the dangers of not going on medications, I decided this was the path I needed to take. However, I never felt comfortable with it. In the back of my mind I always felt like there was another path I was supposed to follow and this was just temporary.

In addition to Predisone, my rheumatologist decided to try Sulfasalize as the first medication to fight the arthritis. Unfortunately, I was allergic and ended up with a rash from head to toe along with high temperatures and a terrible headache. I now have to state I am allergic to "sulfa" whenever I see a new doctor.

Our next step was to try Methotrexate and Plaquenil. I can still remember the outfit I was wearing that day because I kept just focusing on looking down as I sat in his itty bitty patient room with pictures of deformed hands and he very professionally went through the side effects of the medications. I tried not to cry but I couldn't help it. It was humiliating to sit there and cry as he continued to share the news of the side effects of the medications. Although we didn't plan to have more children, it saddened me that it is very serious to not become pregnant while on Methotrexate. It also requires a regular testing of the liver since it can do damage. I would have to have a yearly eye exam because the Plaquenil and Prednisone can cause problems with the eyes. I felt a huge struggle going on as to which was the bigger enemy - the RA or the medication?

September 2004
I was not seeing any improvement with the Methotrexate and Plaquenil. Everything I read said to give it two months to work. I was going on almost four months and I was getting worse. As I read more about the healing power of food, I decided I had to give it a try. The only problem, with so much information out there, I didn't know where to start. I scheduled an appointment with an integrative MD who had a naturopath working her in office. This office was nothing like the rheumatologist's office. It was calm and peaceful. It reminded me more of a spa than an office. There were not any scary pictures of deformed body parts. It wasn't filled with elderly people that could barely walk. It welcomed me and gave me energy. After an hour's appointment, this MD recommended I start seeing the naturopath. Unfortunately I couldn't get in until November. At that time, it seemed forever, especially since each day felt like I was getting worse.

November 2004
I entered the naturopath's office at the end of November with my husband, 7 year old son and 5 year old daughter by my side. I also entered with a limp that my naturopath still reminds me about today. For the first time, I was sat down and was asked numerous questions about me - not just my RA. My naturopath spent over an hour with my family and me finding out everything from my mom's pregnancy with me to my present life. She wanted to know if I experienced PMS and how my RA and cycles correlated. She wanted to know everything I ate. She asked me about my spirituality, home life, past stress, illnesses, day to day activities and much more. I felt like a unique person and not a number as I did with rheumatologist. As I sat sharing information and receiving feedback from someone who asked me questions when I cried and encouraged me to do so, I felt very empowered.

The naturopath's recommendation was to start an elimination diet immediately - not after Christmas as I really wanted to do. The elimination diet consisted of totally eliminating sugar, gluten, dairy, citrus, tomatoes, coffee, soda, and chocolate. Also, I started on several supplements - UltrainflamX, copper, magnesium, licorice, a detox, homeopathy remedies, fish oil, and more. I would continue to see her monthly for about a year and then as needed.

Decembers 2004
When I saw the rheumatologist early in the month, he felt my RA had gone from mild to severe.

The pain and stiffness was getting worse and the rheumatologist wanted to put me on stronger meds. I told him I had seen the naturopath and was going to try the diet and he said diet doesn't help people with RA. I told him I had to at least try it before going to stronger medications. Not only did he tell me he didn't believe diet would help, he also wouldn't return my naturopath's phone calls. I looked for an integrative naturopath because I wanted someone to work with my rheumatologist. I was sad he wouldn't work with her. But, I had to feel okay with that because I felt so motivated with the naturopath appointments and considered my rheumatologist as my drug dealer only. That is what the appointments felt like. I walked in, he asked how I felt, had me make fists with my hands, felt my knees, always avoided my feet which hurt the most and then asked if I needed any refills and to remember to go in for my monthly lab tests. (I was eventually able to move that to every two months)

The elimination diet was by no means easy. I knew absolutely no other person at the time who was following this type of diet. Gluten free items at the time were not quite as easy to find and like today, many were filled with sugar which I couldn't have. But, I was very determined to stick to my diet. I felt like this was my only hope. I am very lucky. I had so much support from my family and friends as I started this diet. People sent me recipes, they researched gluten free diets, and made special foods for me. I don't know how I could have done it without this support. My children and husband reminded me daily that I would improve and gave up a lot of their special foods so that it would be easier for me to stay on the diet.

February 2005
For the first time since we had started monitoring my inflammation rates, I was within normal. This was my sign that the diet was eliminating something from my body that it didn't want. I felt very encouraged.

February 2005-December 2007
For the most part, I felt pretty good during this time period. It did take some work that first year to get all the pain to move out but it was interesting because it left the same way it started - in my feet and fingers. I even remember when I was able to start wearing my regular shoe size again. I had moved up a shoe size to accommodate the swelling in my feet. During this time I would occasionally experience stiff feet, fingers and knees but never flare-ups. My rheumatologist considered me to be in remission. I was even able to eliminate the predisone and reduce the amount of methotrexate I was taking. I felt very successful. However, I still didn't like that I was told I would be on medication for life. "Life" is a long time.

November 2007
My blood test came back abnormal for the liver. The rheumatologist wanted to retest and if I came up high again, we would have to stop the methotrexate. The next test was considered normal. However, it created a new fear in me of what the medications were doing to my body.

December 2007
My feet began hurting again. I am told RA starts in the extremities because our body can do without them but when untreated, it continues to move up our body. The rheumatologist's recommendation was to increase the methotrexate. I chose to wait and see how things progressed.

February 2008
I had been thinking seriously about going off meds but I knew I would have to do it alone. I knew I would not have the support of my rheumatologist and although I love my naturopath to pieces, I have always made her nervous when I talked about going off meds. ND's are not licenced in Illinois and I think she was afraid of being held responsible if something went wrong. I did not want to put anyone in that position, especially since I didn't really know what the outcome would be.

One Friday when I was getting ready to take my weekly dose of Methotrexate, I just couldn't do it. It was if my body was telling me it was ready to do it alone. My body would not let me swallow the medications. I got sick to my stomach just thinking about it. So, I knew this was the right time. I felt strong and ready to accept whatever this new path had in store for me.

March 2008
Within about two weeks of going off meds, I started experiencing some swelling, fatigue and flu-like symptoms. I decided now that I was off meds, I could work with a new practitioner without her worrying about any possible lawsuits. I would continue to see my naturopath but wanted to find someone a little closer to home and felt ready for another perspective.

I met with a chiropractor that was highly recommended by two friends. After completing a Meridian Stress Assessment that found pages of food/chemical allergies, she performed NAET for many of the allergies. She addressed my adrenals, focused on stress and recommended a few other practitioners to me. Although I believe this chiropractor was the path I needed to follow at the time and helped me in many ways, I never felt comfortable with her personality and after seven months I moved on.

One practitioner the chiropractor recommended completed NST treatments on me. They felt great and I started to feel some relief.

Another treatment I tried was diffusion, a form of kinesiology. Diffusion to me is a method of emotionally letting the past go. It was very powerful. She also read a section out of a book on personality characteristics of RA patients. I will have to post it sometime. It pretty much summed me up.

A friend of mine practices orthobionomy. I was only able to do two treatments with her before she left town.

Each treatment left me with very sore joints which I was warned about. As the body is reminded of how to work, it sometimes hurts.

March-July 2008
These were the most difficult months of my entire RA journey. I had swelling, pain and stiffness from my neck to my toes. I felt like my organs were being squeezed and found it difficult to breathe. I could not cover myself up at night because my wrists were so sore and weak. Walking into the store was exhausting because the swelling made me feel like I was wearing weights on my body. My shoulders were so sore I could not lift them to put dishes away. It was a very rough time. But, it was also a time that I learned to let a lot of things go. I had to. I woke up everyday and repeated over and over throughout the day, "My body is always working towards optimal health."

I know some people at the time were thinking this was probably when I should have gone back on medications, but I just believed so strongly in myself and my body. I knew we could do this.

May 2008
I started this blog. I felt a strong need to share what was happening to me. I felt like I was burdening my friends and family with my daily complaints and felt like this might be a good format to share. Never did I realize I would find the community of friends I have discovered.

July 2008
Finally I started to see the swelling in my body reduce everywhere except my finger and knee. They have both been very stubborn. But, as the swelling decreased and I was able to start doing more again, I took this as a sign that my decision to trust my body was a good one.

December 2008
After trying to get the swelling out of my knee and finger by myself, I finally decided it was time to see someone new. Again, a chiropractor that performs many alternative treatments was recommended to me. It just felt right.

This chiropractor does adjustments but also does nutritional assessments with most of his patients and uses homeopathy and herbs as treatment. He found that my body really needed to be adjusted. I like that he can connect sore body parts to foods I am eating. Well, I am fascinated by it. I can't say I always like it. You can't hide the fact that you are cheating. Even when I think I am not eating a lot of sugar, he finds sugar in my body. I am reminded that other foods do turn into sugar in our bodies and I need to be cautious of them too.

He has recommended that I follow a blood type diet, especially focusing on eliminating gluten and dairy. He also warned against overdoing tomatoes. Many of the foods to eliminate for my blood type are also foods my naturopath recommended eliminating which makes me feel like I am on the right path with diet. He also recommended drinking a daily dose of bone broth.

Today
I am still experiencing some swelling in my knee and finger. The pain that I sometimes feel in my shoulder seems to be moving away from my shoulders to only my fingers and my knee seems to be improving while my feet are starting to feel some pain. This makes me feel hopeful since my last breakthrough ended in these two areas. Everything is moving down and out of the extremities just like they started. I am adding on more physical activities daily but also honor my body on the days it needs to rest.

Going off medications was more difficult than I imagined. I do believe that my diet and supplements were what put me in remission for two years and without them, I would be on stronger medications and possibly still experiencing RA symptoms. I was told by my new practitioner that "God wants our bodies to get better." He said you really have to believe that. He also told me our bodies are amazing because when something is wrong they start sending us little messages. Many times we ignore those messages until it has blown up into a disease. Then we take medications to heal the disease. The medications calm the disease for a while but then soon it remembers that there was a reason it was sending us warning signals and tries to warn us again. That's when we go on stronger meds. Again it calms us for a while but the body is strong willed and unless we find the cause for the problem, it will keep reminding us something is wrong. I don't know why but I find that very calming. It helps me to know that my body really does know what's best for me if I only listen.

By going off medications, I accomplished a goal that is very important to me. I still believe 100% that our bodies are wonderful machines that when treated correctly, do amazing things. I feel like I am very close to being in remission again and feel so proud of myself for respecting my body and trusting in its amazing power.