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Walk Your A.S. Off & Unity Run

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.

Photo of people running at Unity Run Pasadena

The crowd running and walking at the Unity Run Pasadena to support and honor those at the Boston Marathon 2013.

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.

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Make A Wish or Bucket List? My Remission List

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

  • Visit family and friends in Indiana and friends in Texas.
  • Travel – I am thinking I need to drag Lloyd across the US a few more times and maybe some International travel.
  • Some off road 4-wheeling like we did in Hawaii, a few more helicopter rides would be good too.
  • Rent a Harley Trike for a day maybe in South Dakota or Utah, maybe do a cross country trip.
  • Morel mushroom hunting in the Sierra Nevada, but it is sold out; maybe we can take pictures.
  • Awareness or community walks, while I can walk I want to walk.
  • Some live music therapy, starting this Sunday, we are going to see Carl Palmer of Emerson, Lake and Palmer at Saint Rocke in Hermosa Beach.
  • Take photos of flower fields.
  • Trip to Sturgis.
Well that is all the fun and crazy things I can think of doing at this moment, I am sure I will come up with more to add to this list. What do you do? What would you have on your list? Instead of music, here are some photos from my first remission period.

Finding Peace While Making Faces

Faces of Juicing Recipe Book Sign

Faces of Juicing Recipe Book coming soon!

Another month just went by pain and symptom free. I have been working hard on a recipe book called Faces of Juicing. I did not realize I have not posted anything on this blog in the last month. Time seems to go by fast when pain free, it is a nice change. I like having a hard time not wanting to stop walking or carrying my stuff. I love getting to pick up my dog Hershey, petting the dogs, holding my camera and anything else I want to do. I can even stand around and sit on any seats now, so yes I love it. I even wore blue jeans this past week, I haven’t done that in almost two years!

RA Warrior is doing another blog carnival and has asked patients to blog or comment on what do you do to keep the disease in taking over parts of your life? Which brings me to Faces of Juicing; during my three years of flaring I started juicing. In the fall of last year I started playing with my food and making faces out of the produce before I juiced them. Before I started flaring I took a camera out all the time to take photos of flowers, butterflies, events and anything else I found interesting. I really missed being able to do something artistic like that, so I decided to start doing something with the produce to make juice.

As I started it was hard staying on my feet that long, they would be on fire before I was done. My shoulder was also on fire many times after lifting and pushing the plunger down on the juicer, one time it swelled up pretty good a few hours after making the juice. But I was really enjoying making the faces and juicing each day. As drugs changed for my Rheumatoid Arthritis I had improvement and now I have no pain at all while juicing or any other time during the day or night. Making the faces gave me some peace from the disease even when I had increased pain from doing it.

I am not sure how to explain that feeling of peace. It was like when I held my Canon Rebel up to my face and looking through the view finder, the few seconds it would take for me to frame the photo and focus on the scene I would have complete peace and the pain would not matter. I found that same peace while playing with my food and making a face each day.

During the start of my third week of being pain free, I got a tweet from another patient in the #rheum community on Twitter. @anetto said on February 24th “@geekgoodgirl @gotbaddog You need to do a Faces of Juicing book. I bet you have enough pictures #rheum”.  I saw that and thought in my head, “OMG, I can do this! OMG, I never thought I would do this.” I have done short technical eBooks on how to do things, usually only a few pages long. Write a book, a recipe book, me? Well you know the craziness of Rheumatoid Arthritis, we do some crazy stuff. So yes, yes I will do this book! A week later I had all the photos downloaded to my computer and began working on the book. A month later I had a 90 page recipe book with over 50 juicing recipes. That is crazy right? To me it was, especially since in the last three years I struggled to write posts in blogs; it is hard to think when you have so much pain and fatigue. For that reason I decided the timing was right so I better get to writing. Currently I am finishing the website and then will release the book for Amazon Kindle and paperback.

But that is not all, what started out as something fun and peaceful to do has now turned into multiple books. I am working on the second book, juicing for weight loss now. Also another person in the juicing community I put my juicing photos up on has been making characters before blending. So I will be working with him on a recipe book for blending. How exciting is that? Continue reading

Crazy But Good, One Month Pain Free

One Month Pain Free

photo taken of a rose at the flower park.

Photo of a rose taken at the flower park.

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.

Is the Rheumatoid Arthritis causing issues with my thyroid?

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

Enjoying the Good Days

photo of an empty box after unpacking

Finally unpacking boxes!

Enjoying Less Pain & Stiffness

For almost two weeks I have been enjoying not having pain or stiffness during the day and only low levels at night. Not wearing any SalonPas pain patches and not using the new portable TENS unit Lloyd picked up for me. I felt so good at one point that I thought about the gym. Instead I am back to walking the dogs and hoping to start some yoga this next week.

Since the addition of Meloxicam generic for Mobic for my Rheumatoid Arthritis, I have been able to stop the Ambien and go back to Benadryl for sleep. Also able to lay flat on the bed again, it has been probably a year since I could do that. I also noticed that I do not need to use my neck pillow or pillows for my arms to rest on while I sit and watch TV or  the neck pillow to sleep at night. I do not think about any pain from carrying bags or my purse. I forget I have my shoes on and can stand around longer.

I am not getting dizziness when moving my head around either. I am supposed to stay on Mobic for 3 months and then see if the Arava has kicked in to help. Warmer months always help so by then I could be better anyhow. Maybe Mobic is something I need for the winter months? All I know is I am going to enjoy the pain free days I am having now.

Yesterday I unpacked my first box, it was nice to be able to do! I moved in October of 2011 but have had to much pain and stiffness to unpack. It was nice to finally be pain free enough to start unpacking. Looking forward to going through another box today.

I have also started to create some social media graphics for Rheumatoid Patient Foundation. I have made a section for RPF graphics on Geek Good Girl. Currently I have some Facebook Cover Photos for patients to use and signs you can post on Facebook, Twitter, Google+, your website, etc. Feel free to download and use them. I am hoping to add more this evening. For updates on graphics follow me on Twitter and Like my page on Facebook. I usually tweet or post graphics as I make them on Twitter and Facebook; only finalized images make it to my website.

Here is a song by Florence + The Machine  called Shake It Out for your music therapy list. I am hoping this is a start of a long “remission” period.

 

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Faces of Juicing Book

Biotinidase Deficiency Not RA

Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.

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