All posts tagged: zerotohero

My excuse

Published by

Rheumatoid Arthritis, i.e. Rheumatoid Disease, can really screw up your plans. My plan was to complete Word Press Blogging 101, organize my research methods, improve my writing skills and write daily. Then the fatigue sets in.  Low grade temperature, swelling feet, ankles, hands and wrists, neck. Pain saturated every joint in my body including my jaw.  I became a slow-moving zombie, too sick to become depressed. Life came to a grinding halt. Too nauseated to eat, but not losing an ounce.  Damn it!  I could see myself in that wheelchair and I just didn’t want to go there. My focus became surviving. I am on a schedule of tramadol and gabapentin. I am on prednisone. I could increase it but hate to.  More sleeplessness. I am on methotrexate injections, Plaquenil, and meloxicam plus the sister medications taken for the side effects. I understand better than I ever had before that I have few options left. I am heading for the slippery slope. Scary thought. My rheumatologist has given me most of what she had. Next …

Managing RA and commitments

Published by

I made a big accomplishment recently that makes me very happy.  I  completed my role as planning committee member for Cancer Support Now’s 4th Annual Long-Term Effects of Cancer Survivorship Conference.  The event was successful. I could see it being valuable to attendees just like it was for me last year.  I had loved it. Felt grateful for it. I had wanted to be involved in it. Being involved had meant crossing town at 5 pm for planning meetings.  Crossing town just at the time when the pain and the fatigue of RA increased for me was a big one. I made the decision to go. It was the first big commitment I had made since my odyssey of two cancers and a diagnosis of progressive RA began. I made the meetings. The conference was coming together. The Monday of the event I woke to severe pain in all my joints. It was not good. The problem with RA is that it is totally unpredictable. Severe fatigue or severe pain are random occurrences.   The pain kept …

RA and cancer support

Published by

Cancer and RA seem to go hand in hand. Shortly after I was diagnosed with RA,  I was diagnosed with two different cancers, thyroid cancer and then breast cancer.  I had the big C hanging over me like a grey cloud, leading me down the cancer road with all the usual experiences.  After surgeries and after radiation treatments, I started looking for help, for support. I found it with the Cancer Support Now Third Annual Long Term Effects of Cancer Survivorship Conference.  A long name worth repeating as I became totally impressed with this organization. Dava Gerard, MD, a respected physician in the cancer field, gave the talk ¨The Journey: From Surviving to Thriving¨.  It was just what I needed.  Arti Prasad, MD presented ¨Holistic Cancer Survivorship¨.  Again excellent. There were breakout sessions. Free lunch from Jason’s Deli. The morning had started with a generous breakfast. I felt welcomed and very glad to be there. Since then, I have joined the board of Cancer Support Now and am on the committee for this year’s conference. Both are big commitments …

Rituxan- the final frontier

Published by

Rituxan, the final frontier February marked the second anniversary of my Rheumatoid Arthritis diagnosis. After two years of treatment, my average pain level was reduced from 10+ to an average range of 4 to 7 every single day.  The constant presence of pain and a body riddled with inflammation continue to suck every drop of energy from my aging, aching body. My treatment was complicated by the addition of thyroid cancer and soon after that with the addition of  breast cancer. Both required surgery. Both required radiation treatment. Both required medication.  Both interfered with my RA treatment. The TNF antagonists, like Embril, are contraindicated for those who have recently had cancer. I am not allowed to have them. The ongoing treatment for thyroid cancer is to keep my body slightly hypothyroid. It helps prevent the cancer from recurring but it also increases the effects of RA fatigue. The ongoing treatment for breast cancer is anastrosole. It eliminates all estrogen in the body. It also puts me at high risk for osteoporosis as does Rheumatoid Arthritis. My treatment originally started with …

Finally, a life

Published by

I really thought I was going to die last year.  To prepare, I filled out the final wishes form.  Next, I made an attempt to simplify my financial records. I said thank you to all the people who have been helping me the last few years. I had a garage sale. What the heck, I thought, I would be the one to get the money if I had one before I died. Just as I thought things were going to get worse, they were already terrible, I started coming out of the methotrexate fog.  I could think clearly again.  O happy days.  At least I had my mind.  Both cancers could return.  My RA could leave me immobilized.  Yet, I would be able to read.  My favorite thing to do.  Preston and Child’s Pendergast series. Baldacci’s adventures. All the fascinating medical books. I could be happy. The methotrexate injections, Plaquenil, leflunomide and the prednisone finally calmed the ever-present inflammation in my body.  This was after 2 years.  And it may not last long, but it is …

The challenge of Feet

Published by

My rheumatologist sent me to a podiatrist, a foot doctor.                 Charming man. Once a client of mine.        X-rays were ordered, the podiatrist way. Standing. Weight bearing. Three views each.  For the third view I climbed steps  and was x-rayed  at foot level.   A  much better test than the standard foot  x-rays. Results: persistent degenerative changes with in the feet bilaterally. I admit that this was expected. What happens next?  My doc said surgery is not the answer.  As my feet get worse he feels steroid injections would be helpful. Now it is important that I wear shoes that fit  well and offer good support.  I should also wear special inserts (Motion Control performance insoles by Prothotics). I got the inserts first.  They are so much better than anything you will find at Target or Walmart. They have support for feet in areas that are thinning in RA. He suggested our New Balance store or REI.  New Balance was closer. They fitted the inserts and fitted …

Rheumatoid arthritis classification criteria 2010

Published by

An international test evaluation for RA.  I scored 7 and I am RF negative.                                                        2010 Rheumatoid Arthritis Classification THE 2010 ACR-EULAR CLASSIFICATION CRITERIA FOR RHEUMATOID ARTHRITIS Score Target population (Who should be tested?): Patients who have at least 1 joint with definite clinical synovitis (swelling)* with the synovitis not better explained by another disease† Classification criteria for RA (score-based algorithm: add score of categories A – D; a score of ≥6/10 is needed for classification of a patient as having definite RA)‡ A. Joint involvement § 1 large joint¶ 0 2-10 large joints 1 1-3 small joints (with or without involvement of large joints)# 2 4-10 small joints (with or without involvement of large joints) 3 >10 joints (at least 1 small joint)** 5 B. Serology (at least 1 test result is needed for classification)†† Negative RF and negative ACPA 0 Low-positive RF or low-positive ACPA 2 High-positive …

How an RA Book Helped

Published by

When I was diagnosed with RA, I was too sick to understand the long term implications. I was grateful at the time to put a label on the devastating attack on my body. I love books and have always looked to books for solutions as well as for pleasure. Soon after my diagnosis, I purchased the book, The First Year Rheumatoid Arthritis by M.E.A. McNeil. With RA there is a major shift in your life. What to do? How to cope? What to think? It is overwhelming. This book set me on the right course. It helped me organize. The most important thing it did for me was define my attitude toward RA. I developed my medical team. I understood I was the manager. I started journaling daily and also logging in my symptoms. I researched the drugs I was on and created files for them. I researched lab tests and understood what they meant and kept a log. I asked my doctors questions and received solid answers. I knew the first few years were critical. I knew …

Have you ever felt stranded?

Published by

Have you ever felt stranded?  Sick …Painfully so…But did not know who to call. Maybe too sick to figure it out. This happens a lot to those of us with autoimmune disorders. I am seeing many doctors, each a specialist who oversees a section of my body.  For me, I have a rheumatologist, an oncologist, an endocrinologist, an ENT Doc, an internist and a podiatrist. However, there is no one who looks at the total me. This week I am in trouble. Things just are not working well enough. The protocols that are to be followed when I am in trouble are not working.  What do you do when your painful issue does not fall into the neat little slot of a specialty? When you are plainly worried that all is going to hell?  Who do you call? Unfortunately, not GHOSTBUSTERS. Here’s what I did. Then I will tell you about my remedy for my next crisis of indecision. It was decided through C-T scans and visits to my endocrinologist and an ENT Doc that …