Lucky?

I consider myself lucky. I was diagnosed early, when many I know took months, even years to get a proper rheumatoid arthritis diagnosis.

My primary care was pretty amazing and suspected what was wrong from the start. My RA factor was borderline and there was no damage to my joints when I was pushed to see a rheumatologist. I saw her in August and by the end of September she told me I had rheumatoid arthritis. She treated me aggressively, worked with me and listened to me regarding what medicine worked and what didn’t. She called me back personally on several occasions when I was scared or confused about my meds or what was happening to me. I will never forget her and her kindness to me. I have since moved to another city and other doctors.

It is now almost five years since my initial diagnosis. I really had no idea what lay ahead of me in terms of my disease or the progression of my body. I have always tried to talk to my doctor and discuss my symptoms honestly and do what I needed to do in order to get to a better place. Though it is still hard and scary, I am willing to try a new medication when the old one stops working. I don’t sit on symptoms, hide them from my doctor, or pretend that I am better than I am. I try alternative methods, natural ways to reduce my stress, and I do what I can in order to best manage my disease. I have bills to pay, mouths to feed, and I just do what I have to do.

How hard was it…

I feel lucky to have made it almost five years with no joint replacements, no broken bones, and I can still walk. For me, that is a miracle. But sometimes I just couldn’t stand to be on my feet any longer. I remember one night I came home early from work when I was still a cashier. I was exhausted, aching so bad I could barely see straight and the 30-minute drive home had magnified the stiffness that was growing all evening. When I came through the door my husband and I got into an argument not long after. I sat down in a chair partially out of anger and partially out of pain. He wasn’t sick then and wasn’t totally understanding of what was happening to me or what I had been diagnosed with. This was before he began going with me to doctor visits and had no real understanding of my disease. We were so angry at each other. He walked into the other room and went to lay down in bed.

I sat in that chair for at least 30 minutes because I couldn’t get up. I was too angry and too proud to ask for help. He went to sleep and I sat in panic, with the pain growing in intensity and an ever growing fear that I would not be able to get out of that chair until morning when he woke up. I was full on in a flare that was aggravated by the emotional distress from our argument. I took several deep breaths and scooted as far forward on the chair as I could. I then scooted the chair as close to the table as possible and leaned forward as much as I could. I grabbed the table with my hands and hoped for the best as I tried to pull myself up. The first try went nowhere, and after calming my pounding heart and a few deep breaths later, I tried again. I was able to pull myself up but I was rather wobbly. I made my way to the bedroom very slowly by steadying myself with whatever object was closest to me. We lived in a small place so there were no big wide open spaces and plenty of furniture close by.

I did make it to the bed and after barely being able to peel the clothes off my swollen body, I inched onto the mattress – out of breath and in tremendous pain. I lay there that night crying myself to sleep, though I woke up several times over from the pain and soreness that grew too much for my exhausted body to shut out.

What now?

When I flare really badly, my joints lock. And, I am talking about my hip joints specifically. Every movement is excruciating and I lose sight of now because all I can see is the white, hot pain that is encircling my brain. Over the years I have tried different meds and some have worked better than others. I have moderate to severe rheumatoid arthritis, so when a medicine doesn’t work for me – it just flat out doesn’t work and cannot control my disease. There is almost no middle ground. I just switched meds and the last medication didn’t work for me. Towards the end of taking it, my disease got bigger and stronger and began to have a much tighter control over my body.

Foot with lightning bolts through it in different colors per section

Electric Foot – Colored Pencil

Still, I had considered myself lucky. Despite living with an aggressive autoimmune disease that is eating me from the inside out, I haven’t had surgeries or joint replacements or any permanent physical deformities besides some nodes and my fingers slightly turning outward. But now my disease is catching up with me. I have extensive damage in my right foot. Under my right ankle, and both above and below the arch in my foot I have almost no ligaments or cartilage. My bones are almost rubbing one another when I walk. My doctor is trying several methods to make me more comfortable and delay the inevitable surgery that is coming when I can no longer stand the pain. At that time, I will have to have my bones shaved, fused, and then pins put in for stability.

I have endured severe pain with my RA and my fibro. I have been told by several doctors and nurses that I have a very high tolerance for pain. So now, it is a waiting game. When will I no longer be able to bear the pain in my right foot? And, I am left wondering….what else is damaged that I don’t know about? What will be next?

I can only grit my teeth and hold on, hoping nothing else breaks too soon.