Living with a chronic disease is not easy. Having so many changes happen so fast is just as hard to deal with as the pain. I am still learning the new me and trying hard to pay attention to what is different now. It has been difficult to notice some of the symptoms I am left with since the pain died down, which seems to be nerve related. So I had my first visit to the neurologist in which I learned I will need to remove few items on my wish list because of neck damage, no sports, not even jumping in a pool. I also cannot wear a helmet.
I did however; get to check off a few items on my wish list. I went to visit with my family and a friend in Indiana, went to see Carl Palmer of Emerson, Lake and Palmer at Saint Rocke in Hermosa Beach, did the Unity Run in Pasadena and I am still walking daily. I did wear myself out in Indiana, I have difficulty pacing myself and other times I have difficulty staying on track. It is crazy. Even though most of the time it was good stress while getting to visit family, the length of the day was longer than my normal day at home.
I visited my sister for awhile I was in Indiana and she was doing well. But now she is in the hospital for the second time in the last two weeks and I spoke to her on the phone this morning. I wish I could be there to help her more, I know how difficult it is to deal with the changes, pain, anxiety and fatigue. Please pray for her full recovery.
During the last year of flaring, when I was missing being able to use my camera, I began playing with my food and making faces. Even in pain I would stand in the kitchen, choose the produce and create a face. I found it gave me some peace. Sometimes it is difficult to find peace while living with this disease and when you do find it, it disappears again. I used to enjoy using the camera all the time, the few seconds framing the shot and taking the photo made me feel at peace. Riding on the back of the Harley with Lloyd made me feel peace. When I began playing with my food and making faces I took a photo of each face and now it is a juicing recipe book called “Faces of Juicing“. In every photo sits the knife I used to cut up the fruits and vegetables, it may seems strange but since my mother lost the use of her hands first I thought I would take advantage of still being able to use those knives.
This past week I joined Team SarcASm of Walk Your A.S. Off, Lloyd is participating as well. This is an easy walk that anyone can join. If you are already doing walks daily you can track your steps and submit them to your team leader each week. The team leader will submit them to Walk Your A.S. Off, it is that simple. You can track your steps with a pedometer or calculate them as 2000 steps per mile. Lloyd and I each submitted 42,000 steps, so that makes 84,000 steps together this past week. If you want to join Team SarcASm let me know or contact Hurt Blogger, she is the team leader for Team SarcASm.
I also joined the Unity Run Pasadena on Sunday April 21st, 2013 for my first three mile walk, the furthest distance I have been during a walk since remission started a couple months ago. Doing some community or awareness walks is part of my “Remission Wish List“.
The Unity Run Pasadena gathering was in honor and support of those at Boston Marathon 2013 attack. The short notice and informal gathering was only successful because of the support of the community. Follow the Unity Run Facebook Page to see photos from the Pasadena event as well as other Unity Runs that take place worldwide. You can see all the photos of the Unity Run Pasadena at Got Baddog.
Before the Unity Run began there was a moment of silence in honor of those at the Boston Marathon 2013. Also there was someone playing Amazing Grace on the bagpipes right before the start. You can see the video on CNN; this was also my first time being vetted on CNN.
I am looking forward to more walking and I will continue to walk each day that I can.
This week I am another year older but I feel so much younger than the last couple years. I am not sure how long this will last but I think I will start making a “Bucket List” or “Wish List”; really it is my “Remission List”. What do I want to do while feeling good or before the next flare? I have a few ideas already, so here we go.
My Remission List
It has been an amazing month of standing as long as I like, forgetting I have my shoes on, walking up and down hills at the flower park, forgetting I have my purse on my shoulder and holding my camera with the heavy lens and flash unit on it without any pain. I have not felt this pain and fatigue free since 2009 and I have missed it! Mobic has been providing the extra relief in the last month. I am unsure if this drug can be taken long term. I stop taking it in another 6 weeks, so I am going to enjoy the pain free times while I have it.
In 6 weeks we will see if the 10 mg of Arava in combination with the Cimzia keeps me pain free. Also it will be warmer then and I could be pain free because of weather. Can Mobic be taken in the winter months only? For me this is the start of remission and hopefully with a few tweaks of drugs I will stay this way for awhile.
Seems like that is what my Rheumatoid Arthritis may be doing to my thyroid. Two out of three tests in the last year have come back hypothyroidism. I have also had symptoms of hyperthyroidism and some of the symptoms can be from the Rheumatoid Disease and the drugs, this makes it a little more confusing. According to PubMed Health hypothyroidism can be caused by “An attack of the thyroid gland by the immune system“, which is what the Endocrinology doctor believes is happening. We could start treating now or see if I can lose weight now that the Rheumatoid Disease (previously known as Rheumatoid Arthritis) seems to be coming under control and test again to see if I am in normal ranges again. So 10 days ago I started to watch what I am eating and going for longer walks to see if I can lose some weight. I have lost 5 lbs so far. Continue reading