I accomplished what I set out to yesterday by taking it easy and really taking care of myself I’m feeling so much better. I’m going out this morning for a leisurely walk around the lake before heading to the Bikram. There is this thing about leisure and taking it easy that just changes someone’s mood, attitude, and is so good for the soul. My brain fog has lifted and really feel like a different person today. That does not mean however that I’m going full throttle again. This is still a weekend resting and recovering completely to ensure that I do not even risk the idea of a flare-up. I’m 224 days without a flare and intend to keep going.
I was reading about different levels of remission and some people can go completely into remission and stop taking such medications as prednisone until they are out of remission. There are others that their main symptoms go into remission but they still have the minor symptoms. For me my flare symptoms are the chills, shakes, deep pain throughout my body, nausea and such a high level of fatigue I cannot get out of bed many times. I have not had any of those symptoms in 224 as mentioned above.
My “minor” symptoms and believe me I don’t really consider them minor so I’m cautious about using that word but Raynauds, fatigue, stiffness and fluid retention. With the Raynaud’s I have had bouts of it and usually when I’m stuck inside the A/C all day which is almost every day but I don’t tend to get it while at home and went an entire week without it. The stiffness I haven’t had in a really long time until I got on the plane. The fatigue comes and goes for me based on stress, sleep patterns and overall life situations. Finally, fluid retention I’m afraid to say I have all the time. My best device is to relieve as much as possible with teas, sweating, and eating low sodium. Even all that doesn’t take it away completely.
I had mentioned in a previous blog that I was thinking about playing around with my medications since that is really the indication of how I’m doing and if I still need them or not. I have a doctor’s appointment
this month and both my mother and husband have asked me to just stick with the managing and don’t tempt it since it is so much easier to stay in mange mode then to go into recovery mode and find management
mode again. I think honestly my doctor would say try it and see maybe you can decrease. My family worries, and I’m torn. I want so badly to be off the medications but at what price? I’m certain the medications aren’t good for me over the long run but neither is having my immune system attack my good tissues. After so many years how many good tissue cells do I really have left? I feel strong and yet I feel concerned about reducing also but what if? That is what I keep asking myself “What if”