Living with RAD

I have to admit, I was having a real problem deciding how I wanted to start this story. I could have said that I am a man that now carries a purse, but my girlfriend laughed and said that was not true. Okay, maybe it is not a purse, per se, but it might as well be. I do not really have a problem with it, as I volunteered to do so, but it is a recent development in my life. There have been several major changes in my life since October, and carrying around a “purse” is but a minor inconvenience in the grand scheme of things. But like I said, I am okay with it. If I am going to live with RA, and I am, there are going to be some changes around here.

Tanya's smile

The Eternal Smile

I know before you started reading this you had to have noticed the lovely young lady pictured above. One might look at the photo, see the smile and immediately think this appears to be a very happy person. A closer look at the eyes reveals that while this person appears happy, there is also a tiredness that can not be hidden by makeup. Only a large pair of sunglasses can hide this. This is my girlfriend Tanya, and she has Rheumatoid Arthritis, otherwise known as RA, Rheumatoid Autoimmune Disease or RAD.

I first became aware of Tanya’s existence on September 11, 2001. We were both involved in Internet marketing and got into a little tiff on a webmaster forum we both frequented. In March of 2003, Tanya asked me to go into business with her, to which I agreed. In 2005, she told me she had been diagnosed with RA. Since she lived in Indiana and I live in Southern California, I did not really understand what it meant when she first told me. I was probably like most people and equated Rheumatoid Arthritis with your normal, garden variety arthritis. I would soon learn that this was not the case. The only thing the two diseases have in common besides the word “arthritis” is the fact that bones and joints are affected. From what I can tell, doctors came up with the name because they were not really sure what RA was. It is only recently that Rheumatoid Arthritis has been given the new moniker of Rheumatoid Autoimmune Disease. This is a much more accurate name as it better defines the disease. It is so much more than just bones that hurt.

In 2007, Tanya and I began dating. I had visited her in Indiana a couple of times prior; at least once in the winter. I could not understand how someone with any type of arthritis could subject themselves to an Indiana winter. I do not have arthritis and my bones started hurting as soon as I stepped out of Midway Airport. When we started dating, I suggested that she consider moving to California. I was confident that even at our worst, the weather in California was still going to be better for her than anything Indiana had to offer. She had two kids in school, so we decided to wait until they had finished and/or moved out. In the summer of 2011, both kids moved on and Tanya started making plans to move in with me.

In September I had to go to Europe for a couple of weeks, so it was decided that I would come to Indiana on the way home, and we would drive to Southern California. I was hoping that Tanya would get some help while she prepared for the move, but I probably should have known better. She did most of the work herself and by the time I got to Indiana she was in significant distress. RA is a weird disease. Not only will the act of moving and packing the physical items cause pain, but stress enhances the pain. As you can imagine, there was plenty of stress when you consider everything involved with a cross country move.

We arrived at our new home in early October. I wish I could say it was an easy transition, but that would not be the case. Under the best of circumstances, Tanya’s recovery takes a lot longer for anything. A simple scratch on my arm may go away in a day or two. Tanya will take several weeks for the same scratch. Unfortunately, circumstances were not ideal. The weather here got cold and wet, which aggravates her symptoms. On top of that, simple things like a work desk and chair that would accommodate her needed to be set up, which meant moving existing furniture around. She can not help and I could not do it all alone, so I had to wait for help. Unavoidable delays that resulted in extended discomfort for the woman I love.

Now that Tanya and I live together, she no longer feels to need to travel to conventions with me. They are hard on her and she spends most of the time in the hotel room anyway. In the middle of January I had to go to Las Vegas for a week. Tanya was starting to feel better and had business to finish up and Vegas is tough on her anyway, so it was a no-brainer that she remained home.

Within a day or two I could tell that this was not going to be as easy as we had thought. We were able to video chat and I could see that she was in a lot of pain. When I am with her, I crack her back 10-15 times a day. Since I was gone, no one was there to help her and her back was stiffening to the point that she could not eat, sleep or think. I called a friend and asked him to go over to the house to crack Tanya’s back. It was a great relief when I knew he was there and Tanya’s pain was relieved, at least temporarily.

So, why am I here, pouring my guts out and boring you with these details?

During one of our subsequent video chats, I told Tanya that I needed to do something to help. I was not sure what I could do; perhaps get a strong nurse to stay with her when I traveled. Maybe I would be able to figure out a way that she could crack her back herself. I felt helpless watching from 300 miles away. Even if the timing was perfect, it would take me a couple hours to get from my hotel to our house to help her. What will we do when I have to go to Miami or Europe? What can I do? I have to do something. Tanya asked one thing of me . . . well, 366 things to be precise.

“I would like you to dedicate 365 posts on your blog to bringing awareness of RA and of the Rheumatoid Patient Foundation and I want you to write an article on CNN about it.”

This is one of the things I find amazing about this woman. She is in extreme pain. There are more issues than I could possibly begin to discuss in one article that are affecting her personally, and her first thought when I ask how I can help is to request that I help bring about awareness about this disease. She wants to help others survive. She is an inspiration to me.

One might ask how she came up with 365 as the number of posts she wanted me to make. In 2010, we participated in Project 365, which was simply a matter of taking a photo every day and putting it online as a daily photo blog. She made it through the first few months, but eventually the RA caught up to her and she really could not continue on a daily basis. By the time 2011 rolled around, she was flaring and in far too much pain to even consider trying. This year she decided to try again, but with her “RA Twist.” Essentially, the “twist” gives her the flexibility she needs to give her a better chance of completing the project. It may take more than a year, but it will be completed. She asked me to write the article for CNN’s iReport because I have a fairly decent track record of getting my articles vetted and she hoped it could get a little more exposure for the Rheumatoid Patient Foundation. Well, I did not get vetted, but I shall persevere.

GotBaddog is already a pretty extensive diary of my life. I asked Tanya if she would have a problem with me writing my experiences living with someone that has RA. She was apprehensive at first, because she knows this will be difficult at times to write just as there will be times that it will be difficult for her to read. It was decided that the benefits outweighed the negatives, so I am proceeding. There is now an “RAD Caregiver” category because that is what I am. There will be at least 365 posts, each of them dedicated to the Rheumatoid Patient Foundation and hoping to bring awareness of Rheumatoid Autoimmune Disease to the masses. It really is a sucky disease. The more you learn about it, the more amazing Tanya’s smile seems.

Hopefully someone in the same situation as I will read my experiences and be able to relate. If someone gains some insight and realizes that they are not alone and no matter how much you love the other person, it is not always going to be wines, roses and fine chocolates. They do not hurt though.

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