Our Petition to WhiteHouse.gov & why you should sign it

Long time readers are familiar with the saga of my fiancee Tanya and her life being diagnosed with Rheumatoid Autoimmune Disease, aka Rheumatoid Arthritis (RA), which turned out to not be RA but rather a Biotinidase Deficiency. Since my server stats indicate that I have a lot of new readers I will summarize the ordeal for you. In December of 2003 Tanya was diagnosed as having Rheumatoid Arthritis due to her joint pain and fatigue. As the years went by her symptoms got worse and she spent close to $500,000 in treatments that included low dose chemo. In 2013 one …

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Adult Biotinidase Deficiency and you

To say that this has been an amazing week would be an understatement; I would go so far as to suggest that it has been a miraculous week. I would like you to take a look at the photo of Tanya, to the left. I took that photo this afternoon (Saturday, July 27); there is no way Tanya would have even attempted jumping up like that a week ago. The fact of the matter is that in recent weeks, Tanya has been extremely clumsy; tripping over her own feet and walking into walls became pretty standard occurrences. She had numbness …

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Practicing medicine

Sometimes clichés are just a little too accurate; for example, to say doctors are just practicing medicine is sad but true and that is what brought about my writing of this particular article. Since I expect that there are new readers here that do not know the back story to my adventure in medicine, I will give a quick review. If you would like more details, you can click the link to the RAD Caregiver category. In a nutshell; my girlfriend Tanya was diagnosed with Rheumatoid Arthritis (RA) in 2004. In October of 2011 Tanya moved from Indiana to California …

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Celebrating Tanya’s birthday & health

Wednesday was Tanya’s birthday and since she has been feeling much better over that past couple of months, combined with the fact that she has been working pretty hard lately, we decided to take a couple days off to celebrate her birthday. We started off on Wednesday at Matsuyama Japanese Restaurant & Sushi Bar and had a couple friends join us. Anyone that has been following this blog for a while knows that we are huge fans of Matsuyama Sushi, so that was a good start to the day. We then decided to go out to Palos Verdes to see …

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Celebrating one month pain free

Back in August I mentioned that Tanya had started using a new drug to combat the pain from her Rheumatoid Autoimmune Disease (aka RAD or RA) she has been living with since 2003. She had been using Enbrel for quite some time, but it did not seem to be doing any good, so Cimzia was suggested. These kinds of drugs usually take a while to get into her system before they start working, and she was in a terrible amount of pain, so her new Rheumatologist started her on various sleeping pills and anti-anxiety pills; but nothing seemed to help. …

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Living with RA: One year later

A few weeks ago several of my siblings came into town to attend a function that was honoring my dad and a few others that attend his church. One of my brothers asked me if I was going to continue writing about life with Rheumatoid Arthritis or not. Apparently he had enjoyed reading my perspective. I explained to him that while I was continuing to do as I had promised as far as bringing awareness of RA and of the Rheumatoid Patient Foundation, I was doing it primarily by donating watermarks on some of my photos to the Rheumatoid Patient …

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Cimzia: Is it working?

As an RAD Lovegiver, the most frustrating thing is watching the woman I love be in so much pain and not being able to do a damned thing about it. On top of that, the medical professionals seem to be guessing at what drug combinations to use to alleviate that pain. I guess that is why they call it practicing medicine. This past week or two has truly sucked. As an outsider, it appears to me that the drug combination Tanya is currently on is doing very little to benefit her. I have been looking through old photos of trips …

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Tests, tests and more tests

When I last posted about meeting Tanya’s new rheumatologist, I mentioned that Tanya had been referred to an endocrinologist to investigate some breathing issues she has at times. Dr. Ishimori was concerned that perhaps there is more than just the Rheumatoid Autoimmune Disease (RAD/RA)at work here. Naturally, they have to schedule all tests to be out at Cedars-Sinai, which means fighting traffic for an hour, then trying to find a parking spot followed up by trying to find out where to go to have the testing done. While we left the house with what should have been plenty of time, …

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A visit to Dr. Mariko Ishimori

Thursday morning, Tanya and I headed out to Beverly Hills and Cedars-Sinai Medical Center to visit a new rheumatologist, Dr. Mariko Ishimori, MD. After Tanya’s last experience with Dr. Forouzesh she decided that she could not handle the stress of having a doctor that changed attitudes and commentary with each visit. The fact that he had been giving her Cimzia as samples that were already allocated to other patients was the straw that broke the camel’s back. I was not really sure what to expect as we entered the Steven Spielberg Building and our introduction to Dr. Ishimori. As it …

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Rheumatoid Autoimmune Disease, doctors and stress

It is no secret that, in general, I do not like doctors and do my best to avoid seeing them on a professional level. Since Tanya moved here I have been with her on several visits to see her rheumatologist; the experience has not done much to change my opinion of the profession. I will admit, after the first visit I thought that perhaps I had been too harsh; there are specialists out there that will really listen to their patients. I thought it was quite refreshing and I looked forward to the experience. When we went in for the …

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