RDBlog Week: Mindfulness

RD Blog Week 2018If worrying were a superpower, that would be mine. It’s also why mindfulness practices are so important to me. It keeps my mind from spinning around about the future and keeps it in the present. It also helps with pain control if I can focus on something else besides my pain. Mindfulness practices keep your focus on the present moment. Thoughts may come and go but you just observe them without judging or dwelling on them. Many people think of meditation when they think of mindfulness but you can also practice mindfulness in everyday activities. I got started when reading the book Wherever You Go, There You Are and Full Catastrophe Living by Jon Kabat-Zinn. Here are a few way that I practice mindfulness.

  • I put on some rubber gloves and wash dishes by hand in hot water. The hot water soothes my hands as I focus only on the action of washing the dishes.
  • For me, knitting and art are mindfulness practices. I can completely forget about everything in the world except the knitting or the art. When I am done, I usually feel refreshed and ready to tackle the world.
  • Mindfulness while hiking or just walking in a quiet park. Sometimes I will just sit and observe nature.
  • Sitting quietly and drinking that first cup of coffee in the morning gets me in the right frame of mind to tackle the day.
  • Sometimes I will just sit and focus on my breathing if I am very stressed. You can find some visual aids online to help with breathing.
  • On days when sleep is difficult due to pain or stress, I will lie in bed and do a mindfulness meditation focusing on my breathing.

I can’t say that meditation has improved my rheumatoid arthritis but it has gotten me through some tough flares and helped me deal with the pain and other stresses that come along with life.

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RDBlog Week: Making It Easier

rdblogweekbadge2018If I was restricted to one tip, it would be to be kind to yourself. Your first job is to take care of your mind, body, and spirit. You have to take care of yourself in order to take care of anyone else. Sometimes life events throw you off center and you don’t have a chance to take care of yourself properly. I’ve been there many times. Just try to get back on track as things calm down. Taking time for self-care is one of the most important things you can do.

Get some human contact outside of your immediate family. Sometimes I force myself to participate in social activities when I don’t really feel up to it. For a couple of years before I was diagnosed, I didn’t do anything except work and crawl home. Getting out made my life so much better but I had to put some effort in to get started. The longer I stay cooped up, the more I dwell on every little thing that’s wrong in my life. Sometimes getting out and having a bit of fun is just what I need. How much you can do will depend on your own situation but human contact is important.

Tools. There are plenty of people who give much better information on tools. Here are a few that I use most often. I have scissors in almost every room for opening things. The days when I could rip open a bag of chips is mostly over. I keep ice packs in the freezer and microwaveable heat wraps available for those achy joints. I use compression gloves for days when my hands are particularly painful. Pre-cut and frozen fruits and vegetables and rotisserie chickens can make food prep for the week easier.  I don’t always trust my hands to cut something firm like a winter squash so I buy frozen or pre-cut. I have apple slicers to cut apples. I also try to keep some healthy frozen dinners for those days when that’s all the energy I have.

Exercise. I have the hardest time with keeping up with exercise, but I usually feel better when I do exercise. I am just now getting back into an exercise routine. Usually I will do some easy exercises at home that I have collected over the years, go walking or hiking, or do some gentle yoga. Choose something you will enjoy and that is appropriate for your health condition. What works for me may not work for you. I went to a diabetes education with someone one time. The instructor made the point that if you have to start exercising by just going to the mailbox once a day, start there and work your up.

Pace yourself. Do what you can. I do housework and yard work in short blocks of time. If all you can manage is to heat a frozen dinner, take a hot bath, and crawl into bed, so be it. So many times I have come home with plans to get a lot accomplished only to end up napping on the couch. As frustrating as that is, it ends up better in the long run. If you take a break today, maybe you can accomplish more tomorrow.

 

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RDBlog Week: Good Time to Start Back Blogging

Thanks to Rick Phillips, it’s RDBlog Week. I’m choosing the wildcard topic for this first day.

RD Blog Week Sept 24 - Sept 28

I didn’t mean to abandon my blog. In fact, I meant to blog last year for RDBlog Week but life and rheumatoid arthritis got in the way. I had several eye problems that made using a computer or even my phone difficult and painful for many months and most of my work involves computers. Then life in general got in the way and I felt guilty and I felt like a failure. So this year I’m starting RDBlog Week with a discussion of how I came to terms with this. In the end, I had to sit down, give myself a good talk and set some ground rules for myself.

Set Limits. I still work full time. Some days have been very long with little time for lunch. I still have some long days but I’ve tried to minimize them and make sure I keep some time for lunch and a few minutes of relaxation. Most important, I won’t feel guilty about time out for doctor appointments.

Naps are okay. Before RA I never napped but with RA the fatigue can be mind numbing. Now I give myself permission to nap when needed. For me it’s usually a one or two hour nap. If it means I don’t get enough done at home, then so be it. By napping through the week, it means I feel better overall and don’t collapse on the weekend.

Do what you can today. The rest will still be there tomorrow. It is okay for things to take longer to do. My primary job is to take care of my health. Those times when my life feels in disarray, I can get it back together slowly with a few steps every day. I may not be able to clean the whole house in an afternoon but I can do the floors one day and the bathrooms the next day. If it takes me two or even three days to do all of the floors, that’s okay too.

Spend time with your friends and hobbies. It is important to get out of the house and spend time with friends, even on the days when I don’t feel my best. If I try to spend too much time inside, I tend to dwell on how bad I feel. Friends and laughter can do a world of good. I also abandoned my hobbies for a while but they are part of who I am, so I have started them back.

We all have to find our way to come to terms with this disease. I’m still a work in progress but I feel like I am on the right track. Now if I can only get back to exercising regularly. What changes have you made in your life since you were diagnosed?

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#RABlogWeek Starting Stories

I keep telling myself that I want to start an RA blog to document my experience. It only seems appropriate that I start on RA Blog Week. I’m getting a late start so this is the prompt for day one.

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My story actually starts about 25 years ago. My job at the time paid for a very extensive physical exam. After all the tests were run, they would call you in if they found something out of the ordinary. Now at that time I was exercising a lot – biking, swimming, and going to the gym almost every day. When the doctor called me in about my results he asked me if I had rheumatoid arthritis (RA), I said no. He asked me anyone in my family had rheumatoid arthritis. My answer again was no. He asked me if I had been sick recently. At that time, I hadn’t even had a cold in a very long time. As it turns out my sed rate was very high, an indicator of RA but also an indicator of infection or inflammation. So I find a doctor and tell him about the exam results. He tells me I’m too healthy to have RA. I felt very foolish and decided never to mention it again. I doubt another sed rate was run until 2015. There’s no way to know now if I did have RA then but it affected when I was finally diagnosed. I put off mentioning it to my doctor until it was very bad (I don’t recommend that by the way.) and valuable treatment time was lost. This is also one of the reasons I decided to start this blog. If one person is encouraged to pursue their rheumatoid arthritis symptoms, I’ll be happy.

By the time I was diagnosed, my hands were so swollen and painful that I could barely get dressed, prepare a meal, or cut my food. Making a fist was impossible. Up until that point, I thought the pain and stiffness was stress and getting older. Plus the pain would come and go until the day it came when it never left. My hands, wrists, shoulders, knees, and feet were very painful. My primary care physician took one look at my hands, told me I had rheumatoid arthritis, and set me up with a rheumatologist. Those days before my rheumatologist appointment seemed like an eternity. Now I’m a researcher at heart and I also work in a doctor’s office so I spent a lot of time consulting Goggle. Thankfully I also happened to stumble on this page by Jessica Gottlieb in my searches, You’ve Just Been Diagnosed with Rheumatoid Arthritis, Now What?. This post finally made me smile and relax a bit.

I’m lucky. I love my rheumatologist and her nurses. She wasted no time doing tests and getting me started on medications. I like her so much that I drive a little further to see her. On the first visit she gave me a big steroid shot, a prescription for prednisone, another prescription for folic acid, a bunch of material on RA and methotrexate, took xrays and drew lots of blood for tests. My biggest fear is that the tests would show nothing. I was so wrong. On the next visit two weeks later I had my final confirmation. All of my RA markers were very high. I started on methotrexate increasing it over the next few weeks. That first visit with the rheumatologist marked the beginning of an increasing reduction in pain and an increase in sound sleep.

Now while the diagnosis is scary enough, the medications required me to take a few deep breaths and just go for it. But really, I’ve had few major problems with my medicines and they have worked beautifully. I had some side effects from the methotrexate but switching from folic acid to leucovorin fixed that. The patient information that comes with these medicines is terrifying so it doesn’t surprise me that some people decide not to take them. I still cringe a little when I see that line “sometimes fatal skin conditions”. I’m sure I’m not the only one who had to take a deep breath before that first dose of new medicine. A few months later, Humira was added to methotrexate which helped more and gave me a little bit of my energy back. Now it’s just another part of my new life. I’m still getting used to my post-diagnosis life but it is much better than the pre-diagnosis life.

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