The End of 2011
Ready for the New Year? I am! Goodbye 2011 and hello 2012! I have been out of remission and in a flare for the entire year. Well actually it started in September of 2010 in mainly my shoulders. Every couple months this past year I have went up a pill in my treatment with Methotrexate, adding more to help reduce the pain, swelling and stiffness. I have improved slowly throughout the last six months, but still dealing with pain, swelling and stiffness daily. My feet are swelling up when I stand or walk to long, which could be within a few minutes to thirty minutes later. Right now I have several great hours a day with very little or no pain and stiffness. Unless I do anything to physical, like stand on my feet or slide boxes around or have my purse on my shoulder longer than five minutes.
Sometimes I feel a little robbed when I am not able to even bowl on Xbox and there is not a heavy ball involved! But I am not able to swing my arm like I am throwing something for 10 frames without ending up with a sore shoulder and hips for the evening. But I can get short motorcycle rides in now, around a half hour to an hour at a time. We did go for a ride a couple times this past week which was enjoyable. I am not sure when the last time I was able to ride on the bike, I know it has been awhile. I first started having issues of riding on the bike again in September of 2010 when the flare started. Before it started I had gotten up to being able to ride for 3 hours easily with stopping to walk and stretch off and on. When I first started riding on the bike back in 2007 after going into a remission period I was in pain within ten minutes of being on the bike.
My hardest flares before 2007 was mainly in my feet and hips. The past two years I have dealt with pain, swelling and stiffness in my neck, shoulders, elbows, wrist, hands, fingers, hips, lower back, upper back, knees, feet, lymph-nodes and eyes and who knows where else. The hardest pain has been in my shoulders, feet and hips. I believe the pain in my neck and back are from the stiffness in my shoulders and hips area, which can reduce the amount of movement of my head from side to side or the ability to stand or sit down easily. Right now it is usually in my shoulders, elbows, hips, knees, and feet during the evening. Shoulders and elbows in the morning for less than an hour. Itching closer to being in remission again. Looking forward to being able to go on more walks and workout again! At least I hope!
This has been a pretty hard year. Too much pain, moving cross country and now playing catch up with life. Everything most people take for granted on being able to do, I get to let pile up until I can do them. Then when I finally feel better and can do things, I get to still skip some of the fun stuff and keep catching up instead. I am almost caught up so I am really looking forward to 2012.
Since the move I have been still sleeping on a couch and sitting at a desk that do not really give me the support I need when I am flaring and it can be frustrating, but another lesson people with RA get to learn. You can fix it, but probably be in much harder pain for 24 hours a day and could cost you weeks to recover or you can do what you can with what you have at the moment. But it is pretty frustrating to not get what you need when you know it will help, some patients struggle with just getting the medication so I can’t really complain to much. I can’t tell you how many nights I have woken up in pain that I knew if I had the supportive bed I need set up then I would not be up at all. But it is part of the things that go unspoken with RA.
We get use to the others not understanding, we get use to not having a way to make them understand our need, we do not give up, far from it. I think people who struggle with RA are stronger than most people could ever imagine. It is a disease we have to learn how to let go, learn daily, maybe how to walk, type, stand, sit or just think for that day. Each day is different, many are difficult and some are to hard for anyone to take. But the days that are good, we learn to take in every minute of it. I could never blame someone for not understanding, I have watched this disease kill my mother and hit my sister before me. There is one thing I think we both know, nobody can really understand the pain unless they have the disease. Even then it may not be the same. Also it is very hard to understand not only for me, but for people that are healthy. Sometimes you don’t look sick, sometimes you look ran over by a truck whether it is the swelling that can be seen or the fatigue in your eyes, but you still are sick either way.
So now it is time to update my RA Stats in my side menu. Currently it says:
MY RA STATS
“Rheumatoid Arthritis since Dec 2003, on Enbrel, Methotrexate, Folic Acid and B12 shots. Remission since April of 2007 with a few bumps in the road. No Prednisone since July 25, 2007.”
The new stats:
MY RA STATS
“Rheumatoid Arthritis since Dec 2003, on Enbrel, Methotrexate, Folic Acid and B12 shots. First remission from April 2007 through September 2010 with a few bumps in the road (remission does not mean free of all pain, stiffness and swelling, but to me more like a headache once in awhile and not on a daily or weekly basis). No Prednisone since July 25, 2007.”
The New Year
This past year I posted I wanted to start working on a non profit for Rheumatoid Arthritis. I was hoping to start something to help patients with Rheumatoid Arthritis. Well Kelly Young the writer of Rheumatoid Arthritis Warrior announced the launch of the Rheumatoid Patient Foundation. So I will spend this year checking out RPF as well as exploring what I can do to help improve my health. I hope to provide more awareness about RA. Kelly has done a wonderful job with her website. I know it is hard and a challenge to keep a healthy balance while you are working, blogging and dealing with Rheumatoid Arthritis. Kelly does do some conferences, which I do for work as well. It can be very difficult to keep on your feet at a conference and each day can add additional fatigue, it catches up to you trying to keep up with healthy people. She did an amazing job with this video about the pain, swelling and stiffness that people with RA deal with trying to live their life.
This year I moved in with my boyfriend in the Los Angeles area , which already is an improvement for my health. I have found anything under 70 degrees and I start to stiffen up, yes strange but it happens. The lower the temperature goes, the more stiff I get. Living where it is sunny and warmer will give me more opportunities to walk around when I feel well. He has been a juicer for a couple years now, so I have also started having juice for lunch. So far I have lost 12 lbs, I do notice on the days I skip it. I feel like I missed something I needed. So I will be adding another category on healthy eating, or what I discover that works for me.
I have heard, read and seen how diet can increase or decrease health issues so I am looking to explore more juicing, maybe a raw foods diet and/or the elimination diet. Many believe allergies trigger flares, well I know that one to be true because I have had flares after having shellfish, which took a couple times before I realized I was having a reaction to eating it. I have bad pollen allergies, not sure how I avoid that one. So I will start with some of the things I can control like food. Looking forward to more exercise, always makes me feel better when I am able to do it. I will try not to overdue it, I tend to when I come out of a flare. It is hard to remember it takes time to get back up to that thirty minute to an hour workout. Right now I am happy with the time I get on my feet each day.
Fun & Relaxation
Looking forward to posting daily to my photo blog Geek Good Girl. I had tried to do Project 365 in 2010. I did well until I started flaring in September of 2010. Then struggled to catch up in a way and then finally let go that I would be able to. So this year I am going to give me a RA Twist for Project 365:
I also plan on posting more in this blog about living with Rheumatoid Arthritis and things I learn along the way. Hoping to create awareness about RA and why it is not what most people think is Arthritis. Many patients with the disease have spoken up about it being called Rheumatoid Arthritis. Having “arthritis” in the name seems to make it less of a cause, everyone gets arthritis sometime or another in their lifetime right? Rheumatoid Arthritis is a chronic pain disease that causes loss of life on a daily basis for many patients throughout the rest of their lives. We fight daily to do the things we do. We leave so much about the pain, swelling, stiffness, fatigue, brain fog, damage and the minutes, hours, days, months and years this disease takes from us untold.
Doing the RA Twist for Project 365 on my photo blog will help me be more successful on reaching the goal of doing 365 post. Taking photos for the blog gives me some fun, peace and relaxation. I am not sure why but the short amount of time that it takes me to focus in and find the layout of the photo before taking the picture I feel relaxed and the pain is not gone, but forgotten if just for a few seconds or minutes. I will be adding buttons/links on my websites to the RPF since it is the first and only organization with the sole purpose of benefitting people with Rheumatoid Arthritis, finally not just thrown in with organizations that are all types of Arthritis.
I look forward to spending the year with my boyfriend (Got Baddog). Who is always there to lend a hand, carry a bag, juice lunch, get me a chair or seat and open doors. Unfortunately, he has felt the pain of regular arthritis once in a great while. This week it happened and when his finger and hand was stiff and in pain he started expressing his pain and then said he was sorry he knows he is being a baby. I know he is not and it is not easy, he can call himself a baby but I am not, it sucks the pain really does suck. I could see some fear in his eyes as he seemed to realize how much more often, longer and harder I am hit with my type of arthritis. He is dealing with one hand, I am usually dealing with both or multiple joints or all of them. But I have to say, he is lucky. I know some tricks to help reduce the pain.
Here is to 2012 being filled with happiness and pain free days.