Rheumatoid Arthritis

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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 Foundation. The reason for this was that living with a person that had RA was not always a pleasant experience and I was not always ready to deal with the strife that might result if I wrote my thoughts for the world to see. Little did I know that some might interpret my lack of writing a an indication that all was well, apparently there are people in my own family that seem to think that we use Tanya’s disease as an excuse to get out of doing things. Tanya frequently discusses on her blog how strangers do not seem to understand RA, how they will offer home remedies that their grandmother used for her arthritis, or how if people cannot see the effects of the disease, it must not exist. I begrudgingly accepted this as reality, but I was saddened when I discovered that this extended to my own family. As a result, I have decided to talk a little about the last year.

In October of 2011 Tanya moved in with me and I learned what living with Rheumatoid Autoimmune Disease (RAD), also known as Rheumatoid Arthritis (RA) was really like. Tanya and I carried on a long distance relationship for more than four years, so I thought I had a pretty good grasp on things as far as RA was concerned; I was wrong. When we were 2,000 miles apart I did not see RAD on a daily basis; I could only go by the comments Tanya might make when we spoke on Skype or ICQ. Considering we lived so far apart we saw each other a lot but Tanya is pretty good about not complaining, so for the most part, I only heard about problems when they were severe. Because Tanya wanted to spend time with me, she would suffer in silence and I really did not know how bad it was. Continue reading

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 was our first visit, I will not go into much depth other that to say that there were additional blood tests ran and an appointment with an endocrinologist was set to check out the issues she is having with glands in her neck. I will make a few observations though. For one thing, Dr. Ishimori’s office ran with clock-like precision. When they say an appointment will start at 10:20 and will lat an hour, it actually starts at 10:20 and lasts an hour. Confidential patient files were not lying all over the counter at Dr. Ishimori’s office. Everyone acted quite professional. I remember thinking that is was almost like Spielberg was directing everything so that there was this precision.

Dr. Ishimori not only took the time to take a very extensive history of Tanya’s past, but she did something I never saw Dr. Forouzesh do; she actually took the time to feel and look at all of Tanya’s joints. Hands, elbows, toes, knees, neck and whatever else that moved. Contrary to Dr. Forouzesh’s assessment that the Cimzia was not going to work, Dr. Ishimori determined that the Cimzia seemed to be doing exactly what it should be doing. That is why a visit with an endocrinologist was set up; perhaps there is more going on than just the RAD (Rheumatoid Autoimmune Disease). Continue reading

Why isn’t your rheumatologist suggesting stem cells?

A few weeks ago I mentioned that Tanya’s rheumatologist, Dr. Forouzesh, had told me about an upcoming Frontiers of Rheumatology symposium that was coming up [at the end of April] in Marina del Rey at the Marriott Hotel. I decided that I would attempt to get a media pass so I could learn a little more about what is being talked about in the profession with regards to Rheumatoid Autoimmune Disease. I will admit, it took a little doing; and while Dr. Furst, one of the co-chairs of the event, gave the okay to my attendance, if I had not followed up no one was going to tell me. When I called to follow up I was informed that I could come, however, I could not bring my camera, I had to sit in the back of the room and I could ask no questions. I was not going to let a little thing like having my hands tied hang me up, so I made plans to go out to Marina del Rey over the weekend.

the Marriott, Marina del Rey, CA

Frontiers of Rheumatology Symposium at the Marriott Marina del Rey

Unfortunately, I was unable to make it to the early morning sessions on Friday due to a major plumbing issue at home. When I attempted to enter for what I thought was perhaps a Q&A and discussion on RA treatments after their lunch break, I was told I could not attend afternoon sessions. One session I really wanted to attend was called Measuring RA Outcomes: Big Brother is Watching. I hoped that perhaps stem cell therapy might have been mentioned. I have a feeling it was not. Continue reading

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