Mary’s Page: Living with Lupus: Catching Up

 August was a physically miserable month. My back pain reached its maximum peak. An MRI showed the spread of rheumatoid arthritis across my back and widespread within my spine. The pain management doctor had a hard time finding an entry point to put the needle to perform an epidural. Spinal stenosis made it difficult as well. I’m amazed at how back pain can cause your entire body to collapse. 

In just one week I’d had a second epidural, saw Two doctors and finished with a benlysta infusion. Now I’m in bed with Benlysta side effects for a week at least. This one wiped me out! Just want to sleep. But as always it wakes me up around 2:00 am and I can’t sleep for hours. Sleep helps to heal our bodies. When you can’t sleep it interferes with that process. With lupus all doctors tell me I need to sleep 10 hours a night. Otherwise less hours will send me into a flare. The flare causes more lack of sleep which causes more flares. Flares cause irreparable damage to my body. You see the endless cycle. If you know someone suffering from lupus and find them sleeping don’t wake them up!! It can wait. Sleep is a much needed part of healing. 

Two weeks after my first epidural  I was back in the pain management office with the same intense pain. The epidural which had lasted three months when I would get them ten years ago only lasted two weeks. I went in with more intense pain hoping for a solution. He did another epidural. This time he went in on both sides of the spine instead of head on. Took him awhile to find an opening but it was easier this time. Two days later the pain had subsided from a ten to a 5-6. It cut the pain in half. Fla

Other areas of arthritis have made itself known. Now spread throughout my neck and middle back I’m also looking at another MRI soon. 

He told me I was in need of another back surgery in the near future. We would use epidurals for as long as they would work but there is another damaged disc that needs to be replaced. That along with so much arthritis has caused spinal stenosis to worsen and surgery would release the pressure around the spine. He mentioned inserting a spine stimulator at some point to regulate the pain. Surgery would release the pressure but arthritis is so widespread that pain of some level would always be there. I’ve been living with pain from rheumatoid and osteoarthritis, systemic lupus and fibromyalgia for over twenty-six years now. You never get used to it but just like death you learn to live with it. 

Pain management added more medicines some of which is over the counter. He said removing me from pain medication would be a bad idea since my pain is intense with medication taking the edge off of it. I don’t want to experience the intense pain without it. Physical therapy said the same thing. My previous MD told me the medications I am on not only cover the symptoms caused by lupus but also make life bearable under an intense pain I live with. Would I rather throw them away? You bet I would but not to the point of living a physically miserable life. The pain management doctor in Lexington said they could only make me comfortable. Help make each day bearable under the intense pain. I’d rather to not have to curl up in a heap of debilitating pain than to suffer. Every day has its own troubles. Pain and illness are not something we choose to add but it happens. 

Today take time to care and encourage. You can’t buy a prescription for those wonderful things because they come from the heart. 

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