RA

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A day at Descanso Gardens

Tanya has been feeling a lot better lately; so much better that she actually forgot to take the shots that she is usually counting down the days before she can use again. Trust me when I say, this is a very good thing. We have been tied up at home lately, Tanya especially as she has been doing some website design for a few new clients. Since she had some free time and the weather was in the mid-70’s, I knew I had to get her out of the house. My friends at BeersInParadise.com told me that Stone Brewing Co was going to be pouring their latest Enjoy By 04.01.13 at the Pasadena store, so I came up with the brilliant idea of heading to Descanso Gardens with a planned stop at the Stone Brewing store to pick up some Enjoy By to bring home and to try the tap version.

After visiting the Stone Brewing store for a while, Tanya decided we should eat, so we stopped by the Congregation Ale House which was a block away. They were having a Stone Week, which made it a challenge to find something for Tanya, but Congregation has a very wide selection of beers, so you can find one for just about anyone.

The watermark on these photos was donated to the Rheumatoid Patient Foundation, because not everyone with RA is able to enjoy days like today. Continue reading

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

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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