It seems to me that managing Systemic Scleroderma is a battle that occurs daily in order to balance life and survive. Should I bother to do that laundry that’s been piling up, or should I rest? (Hmm, what’s more important: Wearing clean undies or being well enough to function?)
Do I take the immunosuppressant and risk getting sick all the time, or not take it and risk my immune system going into overdrive and worsening my disease?. Do I go aqua jogging this morning to benefit my joints, or do I risk an attack of Raynaud’s on the way because it’s very cold today. What to do?
It was this issue of balance that arose during my appointment with the rheumatologist last week. The visit itself went well, and despite one or two slip-ups, I did manage to remain as authentic as possible. (You can read about my mental preparation for the visit here). Balancing treatment benefits against side effects for my levels of inflammation was the topic of the day, as well as activity versus rest in my ongoing struggle with the profound fatigue that goes with scleroderma. Then, just as I thought we were done, my doc says “Let’s review your current medication list.” I settle back into my chair and make myself as comfy as possible because, let’s face it, given the size of that list, this is going to take a while.
I’ve never been one for math. It wasn’t my strong point in school. I was always better at the creative subjects, much more room for poetic license, no insistence on the scientifically exact answer. However, this is NOT the way prescribing doctors work. There’s no room for “Why don’t we just throw in a bit of chemotherapy medication and see what happens?” It is an exact science, and requires expert adjustment and balance. So, given the marvelous variety and impressive volume of my list, maintaining balance between interactions is a big job. Added to this is how much of each drug to give, and this is particularly an issue for me with prednisone.
Prednisone, the drug I both love and hate. Those tiny, white, incredibly foul-tasting tablets that take away my searing joint pain on one hand, and give me a moon face and beach ball body with the other. However, my doctor and I have decided that it’s time for the big prednisone wean-off! To try to maintain balance, the tapering off will take about three months and will progress very slowly. We are hoping for no major flare-ups during this time, and we also have faced the fact that I’ll probably need to be on a small amount for life to maintain balance. You see, it’s all about the balance.
Correct balance also appears to be crucial in the management of my fatigue. Coming to grips with what drains me, and what fills me back up. There’s a little village, about an hour’s drive from my hometown, called Akaroa. It is my “spiritual home,” a place that always recharges my batteries, fills me with a feeling of well being and gives me a calm sense of inner peace. A visit is in order, particularly since I’ve been feeling very scattered and fatigued after my recent hospital visits. However, I have to weigh the benefits of visiting Akaroa against the effort involved in taking the drive there, managing my own bags into my motel room, getting around the village, given my lack of energy and lungs that are fairly compromised (in addition to negotiating joint pain, gastro issues and angina).
I’m still undecided if the benefits outweigh the costs at this stage. Perhaps I’ll go in another month after a little more rest. I figure that maintaining correct balance also requires sensible compromise. For now I think I’ll stay put in my recliner and just enjoy looking at the garden through my window. Not quite Akaroa, but it’ll do for now.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.