It's 3:20 am and I'm sitting up on my easy chair at night again. As I mentioned, this has become a regular routine for me in the last few weeks since being put back on a high dose of prednisone.
I read somewhere that prednisone should be called the 'devil's tic tacs'. I know what they mean. Small, bitter, white pills - I pop them in my mouth every morning - I'm down to 45 mg from 60 mg now so that's 9 pills a day. My doctor is trying to wean me off of them slowly. By the end of October I should be down to a low dose again - maybe 1 a day or maybe off completely. The problem is that life in the last 18 months has been pretty intolerable - and I was on a low dose of prednisone - which helped - but not enough.
I was diagnosed with SLE (systemic lupus erythematosus) or for simplicity - Lupus- on March 6, 2020 at the age of 40 years old. This is the story of my journey in the months leading up to that day and how it has continued on.
There is no cure for Lupus - not yet, anyway and I am still processing this. Writing has always been therapeutic for me so I am hoping that by writing down my story and sharing my journey I will be able to process, I will be able to heal, and hopefully encourage someone along the way.
Back to the "devil's tic tacs' - the prednisone. It makes my thoughts race, it makes me irritable, it makes me nervous, it takes away my natural filter and I become more outspoken. It gives me insomnia, makes me puffy in the face, increases my appetite, makes me retain water, gain weight - it changes my appearance. It could also have long term side effects such as causing diabetes, high blood pressure, osteoporosis, increased infections, and cataracts. BUT, I love it because it also takes away the terrible pain and inflammation I've been living with for a year and a half. I can get off my chair now without pain with every movement of every joint and muscle and connective tissue in my body. I can use my hands to text, to write, to clean, to cook, to play piano. I can walk from room to room in my house without wincing at every step. I can do stairs. I can drive again. I can hug my children. I can go to social outings without embarrassment and with enough energy to actually enjoy myself.
The benefit of these things far outweighs the side effects I'm currently living with. But if I'm honest, I'm worried about what will happen come late September and into October as my dose of prednisone goes down. Will my lupus symptoms come back? Is this just a brief reprieve?
I was started on a chemotherapy drug called Cyclophosphamide on Aug. 16. It's a 4 hour IV infusion that I will be getting once a month for 6 months. The next one will be on Sept. 13. The hope is that this drug will be strong enough to knock my defunct immune system into submission and put the Lupus into remission. So - that's the plan - that's where I am at currently.
My reality is that I take 7 prescription drugs every morning - including the prednisone (and plus the chemotherapy). And right now - life is manageable and for that I am VERY grateful! But my rheumatologist, Dr. O Neil, hasn't given me very much hope that there is anything left to try in terms of medication if the chemotherapy fails. So, I guess the next 5-6 months are pretty crucial. When I look this reality in the face - when I let it sink in - I can get anxious. I don't want to live with lupus symptoms for the rest of my life. I don't want to constantly be dealing with health issues, trips to the ER, complications with my organs, surgeries to replace joints, and the inability to enjoy a good quality of life with my family. This is not something I want. Sometimes I can't help but say, "I didn't ask for this, God".
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