So I’m kinda in a sweet spot. Hallelujah you say? You betcha!
I’ve been at 20mg of prednisone this week, and at 20mg the stabbing pains, the sudden screwdrivers and the constantly aching hands feet and knees return. But it’s manageable. It’s moderate. It’s doable.
The pain is constant, but I am used to it. Most importantly the fatigue is controlled, I have energy with which to fight.
Today I dropped to 17.5mg, on my way to my steady 15mg. There I intend to stay while I take break from doctors, procedures, surgeries and of course my other medications.
Please remember, I am off my meds on doctor’s orders! I’m NOT recommending nor advising it.
Having said that, at this time, it feels completely right for my body to take a break from all the medications I was on (orencia, methotrexate, arava, plaquenil and naprosyn. And of course prednisone, but prednisone must remain.)
I’m recovering well from my surgery now, despite a cold. I have four 2-3cm incisions in my abdomen and all are clean and healing well. Itching even. Good!!! I’ve always been told itching means healing.
If it weren’t for the cold, and my sick kids, I would have gone down to the gym and done a light workout today. But there is no need to push. I will go tomorrow.
I expect that this week will be the sweet spot too. I have recovered enough from my gall bladder adventures to get back to my gym routine, I have enough prednisone in my system to make that feasible. Classes like my Centergy (yoga/pilates) and R30 (30 minute spin class) where I can control the intensity easily. And using the cardio machines and keeping this body moving are paramount.
That disgusting, gnawing, nagging, nauseating pain in my upper abdomen is gone. I didn’t realise just how lousy that was making me feel. So, even though the post op was a bit of a train wreck, I am very glad my gall bladder is gone! It has helped my general wellbeing levels considerably.
As is so often the case, I didn’t realise how bad it was until it was gone. It really is quite incredible how easily we become accustomed to a level of pain or sickness, and start to adapt to it as normal. It can be hard to differentiate between what is ‘normal’ for our disease, and therefore must be accepted and what is part of something else entirely and can be treated and even cured! It’s nice to lose that pain and nausea. Very nice indeed.
I still don’t have much of an appetite though. I have dropped a kilo this week, but weight is the very bottom entry on my list of ‘Things that piss me off’.
I am just feeling ‘heathier’ on the whole, so getting rid of that gallbladder was the right thing to do. But no more surgery for a while! All surgery is difficult. I know that my hips still need looking at. But that is a very big deal and I am not ready to go there. I know that I should get more nerves in my spine ablated. I know that I have a whole bunch of neurological tests still ahead of me. They also want me to add a gastroenterologist and cardiologist to my list of specialists. Well, I just can’t right now.
It’s not critical. I am OK. I can’t face more doctors. I can’t be the sick girl…just for a little while.
I am going to sit in the sweet spot for as long as I can.
Emotionally, I need to recover. Physically I am doing quite well (comparatively). The pain is constant and the sharp blades come when they will. Nights are hard. But I am sleeping, with the help of medication. Compared to constant, severe pain, I am doing OK.
My pain levels really only come in two flavours. Managable and not manageable. In practical terms, that’s what it comes down to. They have been unmanageable for months. Now things are better, on my scale. I am a long way from pain free, but I am up and moving and enjoying life. I am going to ride that wave as long as I can.
I have to see my neurologist this week. I don’t think he’ll say much. It really is ‘wait and see’ until the next MRI. The appointment seems pointless, quite frankly. But I have a good feeling about it. I believe the next MRI will be clear. I’m having very few neurological symptoms. Today my right eye won’t focus. I still believe that’s more Sjogren’s than neurological though.
Truth? I just don’t want to think about it. It’s not denial. It’s just not critical that I deal with it right now. I know it’s there. I’m not pretending it’s not. But I can deal with it in two months when I need to have the next MRI. Until then, it can sit on the back burner. It doesn’t get brain time.
Right now, my son has one week of school and then he’s on holidays. My daughter has two weeks of school, then holidays. This weekend is Easter. That means celebrations. That means fun. That means chocolate!!!
And THAT is what I need to focus on for a little while. Having some fun. Living a little. Laughing a lot. Taking my kids away somewhere, as soon as they are well enough. Recovering physically, mentally and emotionally with the people I care about the most.
Roll on sweet spot.