The alarm goes off on my iPhone at 5:45am most mornings. As I open my eyes and turn the annoying alarm off, the next thing I do as I slowly get out of bed is assess my joints and see if I hurt anywhere. The main areas where the pain will occur are in my hands, shoulders, knees, and hips. Rarely, the pain can also be in my ankles, toes, and even my jaw. If I hurt when I get up in the morning, then I know it’s going to be a rough day. I have Rheumatoid Disease and it affects each person differently. For me, if I wake up with pain, it will only get worse through out the day. Most of my pain starts at some point during the day with a peek at night and sometimes, will keep me awake as I’m unable to get comfortable or sleep the way I prefer.

As I go through out my day, I pay particular attention to what I need to do that day and how it will affect my body and how it will irritate my Rheumatoid Disease. Have you ever heard of the spoon theory? If not, check it out because it gives a great illustration on how those of us with RD have to organize our day and not overdo it. Some days, getting out of bed and getting the kids to school takes more than one spoon, sometimes it doesn’t take a full spoon. It just really depends on the day. Sometimes taking a shower or doing a load of laundry is almost impossible then add on to that having to shuttle kids to hockey, ice skating, karate, and having to help put on their gear and it’s a very painful day. Thankfully, I have great helpers at the ice rink when I need a hand to lace up skates because my hands just can’t pull the laces tight enough or even tie them. This is what my life is like.

I have been living with Rheumatoid Disease, also known as Rheumatoid Arthritis, since my diagnosis in January of 2013. It has been a challenge to cope with this disease as well as a lot of trial and error on how to treat the symptoms of the disease while still being able to function.

As part of Rheumatoid Disease Awareness Day, I decided to write a post about one of the facts and misconceptions of Rheumatoid Disease. Rheumatoid Disease is not just arthritis, arthritis is just one of the symptoms that those of us with the disease experience. This disease affects so much more including the heart, lungs, skin, eyes, and can include a lack of mental clarity, trouble with memory and learning, and also fatigue – incredible fatigue.

For me, the worst parts of the disease include the fatigue, pain in my joints, and the mental clarity/memory issues that I often experience. Thankfully, I work from home so that helps a lot with managing my disease. However, travel has become difficult recently. On my last work trip, I had a lot of issues with my shoulder flaring up with pain from lifting my carry on into the overhead bin. I will have to ask for assistance next time I fly which bothers me. I hate to ask anything of anyone. I also noticed on my last work trip that being at a higher altitude in Utah really caused my disease to flare with increasing pain and increasing fatigue. It also didn’t help that just increasing my walking from a normal day to more than normal brought about more pain. I missed a day and a 1/2 of my work meetings because of needing to rest and taking pain medication to function.

Another big challenge that I wasn’t aware of until recently with my disease is the mental focus and lack of mental functioning. I’m not sure if it’s due to fatigue or just due to the disease itself. However, I did find this interesting: Brain Fog in RA. I know that when I took one particular medication, Methotrexate, the brain fog was horrible. However, I’ve noticed recently that the brain fog is back. Unfortunately, I can’t take the biologics so there isn’t much that I can do regarding the brain fog and mental functioning except to try to get more sleep ( hard with young children) and try to stay organized the best that I can. Though I do admit, I’m forgetful and it does take me longer to learn things when I have to remember a lot of information. It’s very frustrating because I love learning and having a harder time learning just makes me hate this disease even more! It is often hard for me to grasp concepts and things if I have to use a lot of mental energy such as learning how to code with CSS or Javascript. Other things that are more manual/physical like learning how to do simple home improvement projects seem to go better because I can immediately do what I’m being shown or told to do and apply it. However, I may have to look it up again if I ever have to do it again in the future because it won’t “stick”.

Living with Rheumatoid Disease is no walk in the park. It affects each person differently from the next and often, it’s an invisible disease. I may look just fine when you see me, but what you don’t see is the fatigue and the pain that I have in my joints. The arthritis pain that we experience isn’t the same as what an older person with arthritis experiences – our pain includes inflammation, redness, swelling, and won’t just go away with an aspirin or an Aleve. My body is attacking my joints as well as other organs and destroying them each and every day and the battle is how to keep my function and have as normal of a life as I can while not being able to take a lot of the medications that are available.

I have tried almost every single DMARD (Disease Modifying Anti Rheumatoid Drug), and had severe reactions to each one. To go up to the biologics with an increased list of reactions isn’t advisable for me and with my children being so young, I can’t chance the possibility of battling lymphoma or liver failure on top of the RD. For now, I use a combination of pain medication and prednisone to treat the symptoms of the disease and that is all that I can do along with resting as much as I can when I need to. I am hoping though that with the recent death of Glenn Frey that we will get an increased focus on RD as well as funding and research for safer and better medical treatments. It is true what they say, sometimes the complications from the medications are worse than the disease itself.

I know at some point this disease will take my ability to be mobile and use my hands away from me if a cure isn’t found. That is one thing that scares me as I’m fiercely independent and I just hope that I can maintain my functioning until my kids are grown and able to take care of themselves.

For more information on Rheumatoid Disease and other misconceptions, please see this Rheumatoid Patient Foundation article. 

 

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