fatigue

Healing, Learning and Ready for Work

It has been over eight months since I found out I had Biotinidase Deficiency and not Rheumatoid Arthritis. My health has still been improving each month. I am  amazed at how much energy I have, sometimes I do not know what to do with it. I just started being able to sit at the computer again in January with slight pain and last month without any pain. If you have been sick for years and hardly able to stand and then was all of a sudden pain and fatigue free, I think you would have a hard time sitting around as well! Both the pain and the huge amount of energy kept me from sitting down at the computer. I baked as much as I could and kept track of how many hours I could stand on my feet without out pain. Then a few months ago I realized I could be on my feet all day without any pain. It is awesome!

Earlier this month we arrived home from Phoenix and the last hour of the ride in the car I cried because I could not believe I was not exhausted and had no pain. No hip pain, no foot pain, no shoulder pain, no knee pain and no neck pain. Then it rained that week and I cried again because it was raining and I did not feel any pain or fatigue at all.  Then I realized that I cried twice that week without any pain; usually it caused extreme headaches or caused me problems when laying down flat at night. My shoulders are still weak; I am hoping to work them out a little somehow.  Lloyd wanted to start doing some Tai Chi so we may start with that or some yoga.

Now I am ready to work and need to get to work. I have been extremely lucky to have sold so many web hosting clients before I was too sick. Income recently has dropped to an unacceptable level so right now I am trying to figure out what I am going to do. Do I want to stick with technologies? Do I want to rebuild the company? Should I just work for someone else? Should I get into baking full time? Should I go back to school and finish getting my Masters in Business Administration? I feel a little lost on what to do now, I have never in my life had this much energy so I don’t know if I want to sit at a computer all day anymore.  But I have been in online technologies since 1998. Any suggestions?

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Where’s the socks? Is Cimzia working?

graphic about socks and cimzia for RA

Lost my socks but found energy and pain free week.

Where’s my socks?

A strange title but I have really missing my socks, around a dozen pairs disappeared.  The last two weeks when I did laundry I only had a few pair of socks and I knew I had just bought some so I should have more than 3-4 pair. When I go to bed they are on my feet, when I get up they are gone. This week I was looking for my sweater and found a big ball of socks in the chair next to where I was sleeping. I have been pulling them off in the middle of the night and forgot about them in the morning. Finally I have socks again!  I had to giggle when I found them, I forget things but this time I forgot my socks.

Is Cimzia working?

I finished the loading doses and this month was my first full month between shots. Last week I felt great all week, the change of taking 2 muscle relaxers (Flexeril) made a difference. Last Thursday night we were out for Business n Beer and Lloyd’s birthday. I sat on a bar stool for about 5 hours, I could feel soreness across my back by the end of the night. It was tighter the next morning and I felt it throughout the week. I will try harder to remember to sit with my back to the wall for some support the next time! Some lessons are forgotten, I usually make sure I’m sitting in a chair with a back to it, especially if it is going to be for a couple hours.

Before Thursday night the week was pretty good and I had some pain free days. Now I am looking forward to the next 2 shots of Cimzia on Saturday, I have felt some soreness in my jaws, hips, shoulders (when washing my hair or juicing), feet and fingers the last couple days as well as fatigue. The pain just feel like I am bruised and it comes and goes. I remember the same feeling as the Enbrel started working so that gives me some hope that I may find myself in remission again soon.

Even though the stiffness and pain has been better, I have still had to deal with feeling anxiety, feeling frustration and fevers. Next week I see a gland doctor (Endocrinologist), hopefully that will be the start to taking care of the Thyroid issues.

Rheumatoid Arthritis Support

If you are a patient with Rheumatoid Arthritis (aka Rheumatoid Autoimmune Disease) or a lovegiver (aka caregiver) please take some time to visit Rheumatoid Patient Foundation the first organization for RA patients by RA patients. If you are an RA patient, please take the time to answer our survey. You can also sign up as a member and have access to the private patient forum for $25 a year. Running short on cash; then here is your chance to become a member for free. How? Just leave a comment on this post by July 31, 2012 and on August 1st I will put the names in a hat and draw one person and give them a membership. In the comment please answer this question; what other diseases have you been diagnosed with besides Rheumatoid Arthritis?

Also you can join us on Sundays via TweetChat – #rheum at 12:00 P.M. PST. We feel your pain and frustrations, please join us even if it is just to vent, we understand.

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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