Patient perspective: living with arthritis
On #WorldArthritisDay we highlight a personal account of a woman in the US on what it is like to live day-to-day with this chronic condition, which affects 1-2 per cent of the global population.
The gal next door
I am a writer, caregiver and a realtor. I have Rheumatoid Arthritis (RA), Fibromyalgia as well as Raynaud’s disease. My husband was diagnosed with lung cancer in 2012. We have six children, three of whom I home school. One of our daughters has Asperger’s Syndrome. That can be as big a challenge as my husband’s cancer.
A day in my life…
I wake with that creaky feeling in my joints, like I am the Tin Man after getting caught in the rain, and I think about how I feel like this now that my meds are due. I don’t like to think about waiting a week, but no matter; I still have no voice, and a cough that burns in my chest. My rheumy said no to both Actemera infusion and MTX [methotrexate] until next Friday. I do still have prednisone that I take daily. I will just take it easy, and try to get better. My immune system can recuperate in the meantime.
Day after day…
I am a bit discouraged. I was doing so well with my new RA med. Then we had several storms, and we went camping. The day after camping we helped a friend pack to move. The next day I was pretty much crippled. I couldn’t even walk. So I tried a new thing with my prednisone that my doc suggested – ramping it up super high for just two days, rather than a taper, and then dropping it back down to my normal daily dose. Wow! I couldn’t sleep, I was one crabby mama! But after the two days, I was walking again. Now, I am just SO tired. I have gained so much weight from all of this up down up down with the prednisone. I am so thankful for a loving husband who doesn’t seem to notice, but I feel it (physically). It just adds to the stress on my joints.
A simple shopping trip makes me feel like I danced all night and was dragged home by a semi truck. Thoughts and words don’t match up. Not able to concentrate, my memory gets scrambled and depression sets in. I have no control over my body from one day to the next, and sometimes from one hour to the next. Weather changes and cold damp air can send me into a tailspin, causing flare-ups for days, weeks, or months. I often ask, “Why me?”
Arthritis causes pain that waxes and wanes with no rhyme or reason. From burning and tingling to stabbing and crushing, the pain can spread from one area to another, bouncing around like a ping-pong ball, or spreading over the entire body all at once.
When treatments lead to other conditions…
I have eight kidney stones – five in the right side and three in the left side. I am totally miserable. I have chronic kidney stones, one to two about every three months. They think it is all from my RA medications. I take Plaquenil, methotrexate, and Remicade. We finally have a regimen that works, and now we are going to have to change. I feel I take one step forward and three back. I get so tired of it; nothing is easy. And no-one understands. I am in a lot of pain in my right side, and I am so nauseated. And, no, there is nothing they can do. They are small and too far down to bust up. Unless it get to the point of occlusion, then surgery is not an option. I just have to wait them out. Go to rheumy in a few weeks, and we will talk then. I get so tired of people not understanding and not caring. I can promise you that if they were going through this, they would have more sympathy. I never know how I am going to feel each day. It truly takes me about four-to-five hours in the mornings to figure out how I’m going to feel for that day. Life like this sucks.
Going forward…living life!
I used to think I was sentenced to a life in prison when I was diagnosed with RA. Then the other illnesses began to be piled on the heap. It was an attitude that needed adjusting. If we find we are miserable then we need to change what we are thinking and look at how FULL our life is rather than how EMPTY.
Those of us who are sick are on a new journey! It is not just being sick, but applies to everything in life. It is with a different way of living we need to adjust our thinking. It took me time; I grieved after I could no longer work. I had defined myself by how much work I could accomplish and how much money I made. I decided to redefine who I am. Today I am comfortable in my own skin. I love not having to rush and hurry. I can’t anyway…so this is good…
The reality of World Arthritis Day…
An arthritis diagnosis is more than a day. Individuals live with this diagnosis every minute of every day. Finding a way to share something private about your health so you can leverage being social as a way to be healthier, is a daily occurrence on the internet. This story shared on www.TreatmentDiaries.com is one example of how privacy breeds transparency. This individual’s story is one of numerous patient stories of hope and perseverance and a living inspiration for those who are newly diagnosed or living with arthritis that they are not alone in their experience. So be encouraged on World Arthritis Day 2015.