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.
When it was decided that Tanya would make the move from Indiana to California we set it around a business trip I was making to Europe. She would have a yard sale or two and try to get rid of things she did not want to bring out here. She would also arrange a trailer and have it packed by the time I returned so that we could essentially head to CA within days of my return. I specifically recall telling her to get help doing these things. Unfortunately, she had minimal help, and by the time I arrived back in IN I could tell she was in a lot of pain. We made the 2,000 mile drive, and really did not have the opportunity to enjoy it like we usually do, she was not able to do the things we normally did on road trips.
By the time we got home to L.A. she was in a lot of distress. The drug cocktail she had been using for the past few years stopped being effective and we had a wet and cold fall and winter; two things that aggravate RA. This meant that unloading the trailer was a major hassle and trying to get the house situated for her was a real chore. Just getting a desk set up for her was difficult because it meant rearranging furniture and she simply could not help. I am not as young as I used to be, so days of lifting furniture solo were not going to happen. We eventually got her set up, but each day of delay meant an extra week of pain for Tanya. On top of that, she had to find a capable Rheumatologist in the area. I had to go out of town for a week in January and it was then that I discovered just how tough this experience would be.
Between weather, lack of effective drugs, sleeping facilities (she cannot sleep on my bed) the RA was taking a toll on her. I do not know how to explain what it was like for me. She might break into tears for what seemed like no reason, but when questioned I would find out it was something I had said a year before or something she remembered experiencing with her mother (also a victim of RAD) that would cause her to break down. If I got mad at something entirely unrelated to her and yelled at my laptop or something, it stressed her out, thus aggravating her RA. For those new to my posts on RA, RA has weird effects. For example, a scratch that might go away in a day or two on you or me will still be visible on her a week or two later. The lack of sleep does not help either. She would be in so much pain that she would not fade off to sleep until 3:00-4:00 AM which meant she would not wake up until 2:00 PM. It became difficult to make any real plans.
In April, Tanya was able to get her first visit with a Rheumatologist in the area. He ran some tests on her, but there is always a delay in getting results and a follow-up examination. She had to go back to Indiana in June and that really aggravated her condition even more. By the time she came back to CA she was in worse condition than when she left. In July her new doctor decided she should try a new drug for the RA. This meant she had to get the old drug out of her system then load up with the new drugs. This just meant a couple months with nothing that was helping her deal with the day-to-day pain she experienced. After a few weeks the doctor said the drugs were not going to work, but we suspected this had more to do with his ability to get free samples from the pharmaceutical company than actual results, so Tanya found another doctor.
The new Rheumatologist did more tests and put Tanya on some new muscle relaxers because the ones she was taking did not seem to be helping; besides, Tanya was not sleeping which caused even more distress. Eventually we were able to find a combination of sleeping pills and muscle relaxers that would give her the ability to sleep. The thing is, the drugs were causing her to sleep until noon and beyond; so less than ideal, but at least she was getting sleep. On the upside, her new RA drug (Cimzia) did not have the same restrictions on “no alcohol” as her previous meds; so she was able to join me in experiencing craft beers. It may seem silly, but it is the little things that count. One of the “little things” are bar stools. Since she had never spent much time on one, she was not aware that the simple act of sitting on a bar stool could result in days of pain. It took a while to figure that one out. We eventually bought her a wheelchair so we could be sure she had somewhere to sit when we visited microbreweries.
Around September or October Tanya started feeling a little better; not exactly the remission she experienced a couple years ago that allowed us to travel internationally, but she was able to take a couple motorcycle rides with me. It truly is a wait and see game we have learned to deal with. Some days she wakes up feeling better than others. Some days she feels well enough to not let her RA get in the way of enjoying life, only to have to pay for it for the next several days. When I ask her why she pushes herself on those days the response is always the same, “Because I can.”
Life as I once knew it has changed. We do not make plans any more. We have things we would like to do, but the reality is we have to wait until she wakes up to see if we can really do it or not. In the not so distant past we thought nothing of getting in the car and taking a road trip. When she first moved here she could not even drive herself five minutes to the market, at least she can now do that again. Today, a couple hours sitting in the car can take her out for a few days; if the weather is cold or wet the recovery time will take longer. In the past year I think the longest trip we have taken together was about 100 miles. Of course, we had to spend the night so she couple make it the 100 miles home. When people invite us to functions that take a couple hours to get to we do not know if it can happen until the day of the event. If your event is early in the afternoon, the odds are against us. We happened to take a tour of a ship last week. With all the walking and climbing up and down of stairs I had to keep Tanya’s comfort in mind and make plans of what we would do should fatigue set in. I found it interesting that during our walk around the ship there was one section of the deck that had a rubber mat on it; Tanya immediately stopped walking just to be able to enjoy the softer floor. It is that kind of sensitivity that she must deal with.
Tanya has started going with me once in a while when I take the dogs on their evening walk. I have to adjust the route we take according to length and terrain. Grass or dirt paths are tough on her. Cement sidewalks are okay, but if it is a cold night she can feel the coldness come up through her shoes; if I put my hand on her back she can feel my body heat through two sweaters and a t-shirt! RA makes the story of ’The Princess and the Pea’ seem entirely feasible.
I am going to wrap this up because the reality is I could probably write a book on what it is like living with someone that is suffering from Rheumatoid Autoimmune Disease. All I can do is hope that friends and family will read this and perhaps get a better idea of what life is like. RAD is a disease like no other and I hope you never have to deal with it; all I ask is try and understand that when we do not show up for a function it is not because we do not “want” to come, it is because the pain and recovery time is too great a price. It has nothing to do with you personally. Hopefully, 2013 is going to be a better year but all we can do is hope, it is all we really have.