Real Profiles of Rheumatoid ArthritisPhotos © Tim
Coventry, United Kingdom
How long have you lived with RA?
What advice would you give to someone who has just been diagnosed with RA?
Never let it get you down, I always find my mood and pain are somehow inter-related, so stiff upper lip as it were! Be pro-active and set yourself goals to work towards, discuss the right medications with for you with a specialist, see a nutritionist or get food allergy tests. For example 10 years ago I had things like ‘be able to open a soda bottle or car door’ now it’s things like ’2 years to train for a 32km run and about the same time to become a Jiu Jitsu instructor.’ Once one target is met, you can set a new target and although for some people the limit may be much more than mine, I would hope for someone that is freshly diagnosed with RA, they too might know that although it is hard work they can achieve a relatively normal life.
Do you use any mobility aids?
How has living with RA helped to improve your life?
If I hadn’t have had a horrible debilitating auto-immune disease teach me to have mental and emotional strength, to cope with and be determined to get going when the going got tough, to stand up under massive strain and say “bring it on, I got plenty left!” I would never have got as far as I have now in life. Aside from that I probably have a much greater appreciation for little things in life that if I had never been ill I would have taken for granted. I also am probably far less judgemental and I try to think from other peoples perspectives before I get critical of them, you just never know what people are going through!
Do you have any visible signs of RA?
Can you please describe some of your favorite coping strategies for living with RA?
Ask my mother, I more often than not have actually forgotten I am chronically, it’s only when someone out-performs me physically who shouldn’t that I remember. Then I use my injured pride as a driving force to achieve ever greater physical feats, I don’t recommend trying that one at home though and everyone else is probably much more mature about it than I am.
Can you please describe your current medical (traditional and alternative) treatments?
Is there anything else about yourself that you would like to share?
Despite it all I live a vaguely normal life, I have an engineering degree in Aerospace Tech and hopefully soon a job with which to put my knowledge and skills to good use. Better for my health than a desk job I suspect! As a side result of having an auto-immune disease and meeting the goal of overcoming it, life is no longer fun if it isn’t challenging, so I am much into the outdoors and doing things like survival courses with field craft and camp craft, cross country cycling and hiking. If I am not putting stupid demands on my mind and body, then I am probably reading or playing video games, or having good times with friends and family!
It used to be, when I looked at all of the challenges that I continually face day in and day out, that I would get depressed. After all, it’s hard enough to get through a rough period, whether it be emotional, physical, or a combination of the two; it’s even harder to have to do so on a daily basis.
Recently, however, I’ve noticed–usually late in the evening, as I’m getting ready to go to sleep–that when I look back at my day, I experience true feelings of joy. My happiness is not dependent upon whether my day was “rough” or “easy,” nor is is based upon whether or not I was in a flare. These feelings that I experience, at the end of each day, come from the knowledge that once again, I successfully overcame all of these challenges.
Yes, I know I’ll have to do as much again tomorrow. But once it becomes routine, once I realize that this feeling of success has nothing to do with how little or how much I have been able to accomplish during the day, everything becomes just a little bit easier.
I’d also like to add that “how well” I cope with these challenges is a major factor in how well I feel, emotionally, right before I drift off to sleep. But even this statement, I question. Yes, there are days when my first impression is that I’m not coping very well at all. (A little over a week and a half ago I had three major anxiety attacks within a 24 hour period.) When tears take over and when my fears continue to sneak up on me, it’s easy to jump to the conclusion that I’m not coping well. When I look back at these episodes, though, I realize that even during these most challenging times, I’m coping the best I can. And in its own certain way, coping the best I can does mean that I am coping well.
Yes, I will live with these challenges every day, for the rest of my life. Such a statement used to instill in me a sense of panic, fright, anger, and so many other negative emotions. Now, believe it or not, I actually feel a sense of joy. I’m not happy that I *have to* deal with pain and disability on a daily basis, but I’m certainly happy that I *can*.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Many readers know that, for almost the past year, I have been treating my rheumatoid arthritis without medications. Some people have interpreted this as me saying that I’m not doing anything for my RA, something which could not be further from the truth.
During this past year, I attended physical therapy on a 2x or 3x weekly basis, I successfully incorporated an extended-period of daily pool exercises, and I made great strides on the emotional front, through actions that range from adopting various lifestyle changes, to removing multiple pre-existing stress triggers, and increasing my levels of acceptance of this disease with which I live.
On the previous occasions when I have shared the fact that I am not taking any meds, while most of the responses that I received were generally supportive, I did notice an uptick in critical comments. I was accused of being irresponsible, of being anti-med, of being an advocate for snake-oil “cures,” etc. I also received messages from some people, demanding that I fully explain–publicly–why I would ever even consider following such a route, when it came to my treatment options.
But, as with many other aspects of living with RA, the final answer comes down to determining what it right for *me*, despite all of the suggestions, comments, and feedback that I receive. People who have been reading my blog for a while know me well. I have never considered the words that I write here as directions to others, or suggestions about what they should or should not do. When I write, I am only choosing to share what I have learned and continue to learn about living with this chronic disease. I have never had any qualms about talking about what does and does not work for me, and by doing so I have never made any assumptions that I might be speaking for others. I only speak for myself.
And while I may not have always fully articulated the reasons why I have not taken any medications over the past year, I have always had full confidence in the knowledge that the decisions that I have made in the past and continue to make in the present are the right decisions, for me. And, as with many other aspects of life, there is much to be gained from having confidence in one’s own actions.
Yesterday afternoon, during a 90-minute visit with my rheumatologist, I made the decision that I would once again start taking medications to treat my rheumatoid arthritis. You might think this decision was the result of pressure that I received on his behalf, but this was not at all the case. In fact, I left the office with three plans that my rheumatologist himself proposed, and which he fully supported; Plan A and Plan B involved different types of medicines, and Plan C involved continuing on the med-free path that I am currently on.
My decision to return to meds, even though it was made during this hour and a half conversation that I had with my doctor, was based on my ability to finally understand and communicate many of the different reasons why I stopped taking medicines in the first place. And by being able to so clearly understand why I needed to stop taking meds, I was also able to confidently make the decision to once again take meds.
- Connecting with my “non-RA” self: I have learned that no matter how much pain I might be in, no matter how much disability I might be experiencing, there is always a part of myself that will remain unaffected by this disease. Yes, there have been many times when it feels like my rheumatoid arthritis has taken over my complete self, but I have learned that–even in these moments of crisis–there is still a part of myself that I can tap into, and grab on to…and that by doing so, I am able to pull some sense of order back into my life. Over the past few years, I have noticed that after being on meds for an extended period of time, I start to lose this “non-RA” piece of myself. While this one part of myself never succumbs to the disease, it does eventually start to be affected by the drugs…and when I start to see this part of myself fade away because of the medications, and when I am no longer able to tap into this “non-RA” self for the support that I need, then I–as a complete person–begin to fall apart. It is at this exact moment when I am able to determine that the drugs are doing more harm than good, and that I need to give my body the break that it is asking for.
- Failed hope: I know that I go into every treatment plan with a certain sense of hope. After all, I continue to invest all of the necessary time, effort, and money with the idea that these treatments are going to alleviate some of the pain and disability, and help slow the progression of this disease. I know that every individual responds differently to different meds, and that what works now many not necessarily work in the near future or vice versa. But even with all of this awareness, I think that certainly at the conscious level, and probably even more at the sub-conscious level, there is much more hope than I am even aware of attached to each treatment plan. When that point is reached, where it is determined that a certain treatment plan is not working, despite the brave face that I’ve often put on in the past, the emotional effect is absolutely crushing. Yes, I know that there are many different options which can be tried, and I know that if often takes months to even determine if certain drugs are helping, I know this, and much more. My logical side, my mind, knows exactly what to do, and how to handle the situation. My emotional side, on the other hand, is not always as prepared, and often feels like it’s being dragged on for a long and bumpy ride. Like I mentioned in the previous point above, once this emotional side of myself become too fragile, I need to take the necessary measures to increase its strength. For me, in the past this has meant taking a break from drugs, and for the future, this means exploring further the connections that I have between medicines and hope, and how to deal with this shattered faith and this lost hope, after a treatment plan does not work.
- Financial implications: In an ideal world, all of us would have access to all of the drugs we need, despite our financial situation. Now, when I made the decision a year ago to stop my meds, I can honestly say that the cost of my meds did not factor into my decision, even though many months it practically came down to a decision as to whether we were going to buy my medicines, or have money for food and utilities. (Buying my drugs always won. And yes, for an extended stretch, we did have to deal with multiple utilities frequently being cut…) As I stopped taking drugs, for the reasons explained above, one of the first things I started to notice was that there was actually enough money to pay for what we needed each month…and then, as the months passed, I actually started to realize that there was a little money left over. For the first time in a long time, even though it was still quite thin, we actually had a financial cushion…and my stress levels started to drop. I was no longer continually worrying about how I could pay for my drugs. And as I stopped doing so, I noticed that I had eliminated a huge stress trigger…and as I’ve learned over the past few years, anytime my stress levels goes down my RA gets better, and anytime my stress levels go up my RA gets worse. Like I said, this wasn’t a factor that was considered going into my decision to stop taking drugs, but it was certainly something that I noticed afterwards.
So I don’t know exactly when, but over the next week or so I will once again start taking yet-to-be-determined medications in hopes of controlling the inflammation in my joints. (First, I have to have some different lab tests done, probably at the beginning of next week.) Yes, I’m already beginning to wonder how all of this might be paid for, but in the end, things will work out, as they have always done in the past. (And if they cut my cable or telephone line, so be it!)
I will never regret my decision to not take drugs over the past year. Doing so has helped me learn so much (only part of which is highlighted above), and has allowed me to strengthen a part of myself that I know will continue to carry me far into the future. And chances are that I will more than likely take another one of these extended breaks in the future…but I’ll cross that bridge once I get there.
I know that these decisions that I have made in the past, and continue to make in the present, are the right decision for me. They may not make sense for everyone, but the only thing that matters is that they make sense for me. To know that even my rheumatologist, in addition to my friends and family, understands as much, means a lot to me.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
A drug that “blindfolds” white blood cells could provide a new way of treating rheumatoid arthritis, new research has shown.
The drug stops the destructive cells migrating to the joints, where they cause the typical damage associated with the disease.
Rheumatoid arthritis is an auto-immune disease in which elements of the immune system attack the body. White blood cells called T-cells are key players in the process.
Study leader Dr Graeme O’Boyle, from the University of Newcastle, said; “Imagine that the damaged joint is covered in flags which are signalling to the white blood cells. Traditional treatments have involved pulling down the flags one by one but what we have done is use an agent which in effect ‘blindfolds’ the white blood cells.
“Therefore, they don’t know which way to travel and so won’t add to the damage.”
The study, funded by the charity Arthritis Research UK, is published in the journal Proceedings of the National Academy of Sciences.
Last evening while I was home alone, I had a moment of crisis. This was due partly to the pain, and partly due to the fact that I was by myself. And while I could have called my partner and asked for help, I didn’t.
You see, he was taking care of his mother. She has been in the hospital since the middle of last week, due to heart problems. (My mother-in-law lives upstairs from us, and her added absence is making the house feel even more lonely than usual.)
Stress levels have been rising for more than a week. First was the news, received on a Friday afternoon (right before a weekend during which not much could be done) telling us what was wrong. Then, there were the concerns about what types of treatments and procedures she would need, and how the financial expenses were going to be paid. Lastly, was her actual admission into the hospital a few days ago. (The latest news: she’s responding quite well to some of the treatments, and continues to do much better than expected!)
On top of all of these worries were my own secret worries. While there certainly aren’t any unhealthy dependencies in our relationship, there definitely is a clear division of labor that we have established around the house: tasks that require more movement and physical strength are done by my partner, and tasks that require more planning, organization, and desk-work are done by me. It’s a somewhat unspoken agreement that took us a long time (and many arguments) to figure out, but now that we’ve been using the system for a while, we both agree that it works quite well.
So as I knew that I was going to be spending more time home alone, and that I was going to have to do more around the house than I’m normally used to, I started to get even more stressed. But then I stopped myself, and told myself that all of this additional stress and worrying wasn’t going to help any, and reminded myself that I would just get through the recent and coming week day by day, hour by hour, and (sometimes) minute by minute.
And all things considered, I’m doing quite well, with an occasional (emotional) stumble here and there. I’ve started reaching out to others beyond my partner for support during these past few days; in fact during last night’s episode I called one of my sisters, who walked me through my crisis. (And I absolutely loved hearing the crys of my infant niece in the background; I will be travelling back to my home country of the U.S. in the near future to attend her baptism as her godfather!)
My partner has always supported me unconditionally, and I love him dearly for that. I know that even now I can still count on him for all of the support that I need, but I’m very aware of the fact that this plate is quite full with taking care of his mother. (In addition to being my primary caregiver, he is also the primary caregiver of my elderly mother-in-law. Some days, my heart breaks when I see him running upstairs to give his mother lunch in bed, and then running right back down to give me my lunch in bed.)
Yes, things are very stressful for each one of us in my household at the moment, but I know that–together–we will get through this.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
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- Harvard Gazette: A Journey Into IllnessJanuary 12, 2015 - 4:19 pm
- Health.com: 11 Famous People With RAOctober 1, 2014 - 9:50 am
- Arthritis Broadcast Network: Spotlight On Arthritis SuperheroesSeptember 10, 2014 - 7:34 pm
- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am