I've looked at this picture hundreds of times. It's in our BWCA 2008 folder and is one of my favorite places to look. The trip itself changed my life. But for some reason, this picture told me something different today. As is often the case, it told me what is going on inside of me. Which, of course, I did not realize until I finished the writing! Kind of like a dream will do upon waking.
I had a "boat load" of appointments over the past two weeks. It seems like my main doctors reached their six month evaluation point all at the same time. But it was during these visits that I made some rather big decisions. Decisions that came on the heels of a lot of pain and frustration. Decisions based on the potential for serious long term side effects, the ongoing inability to recuperate from chemo therapies and the recent "leveling off" of certain blood work. I have decided once again to try and taper off the prednisone that I have been on for three years as well as taper off the IVIg infusions.
I've tried twice before to taper off the prednisone, only to return back to higher dose due to intense pain and illness. Prednisone is the drug people "love to hate", or so the saying goes. It's a miracle drug in regards to my illness, but the side effects, both long and short term, have serious consequences. But after reading Coping With Prednisone by Eugenia Zuckerman and Julie R. Ingelfinger, M.D., I have come to the conclusion that I have not given tapering a fare shake. In a nut shell, it is normal to feel extremely ill during the tapering and for months thereafter. As I gauge what I was experiencing with what seems to be acceptable withdrawal, I have decided that I can give this another chance. But I'd be lying if I did not tell you that it scares the shit out of me.
In regards to the IGIg, this is my thinking. I've been on infusions for well over two years. When I began on them I was not on two of the other major chemo therapies that I am on. I would like to see if these drugs alone can manage my illness. The IVIg was not treating the autoimmune illness itself, it was treating a symptom - the peripheral and central nervous system issues I have been having. The other drugs I am on actually control the illness itself. It could be quite possible that these medications are now keeping things in check and I would no longer need the infusions. And the only way to find out is to fill the boat with water!
My initial reaction to these thoughts as they entered my mind was pure fear. Fear of the "what if". But as I worked through the fear what I realized was that my hesitation in attempting this was based out of my belief that I could somehow control my illness. A control that had become blind to ALL possibilities. Which meant that maybe, just maybe, letting go would bring about something better and not necessarily something worse. Once I realized this, I felt very compelled to speak to my main doctor about it. The appointment went very well and we were both in agreement as to what should be done. Let's see if the boat floats!
So here I am, week three on my first decrease of prednisone and one half infusion later, and I'm feeling pretty shitty - but giving it my best shot! I have to say, I'm not that thrilled about potentially messing up my summer with withdrawal symptoms. But is there really any good time? Nope! No time like the present, that's what I always say!
I do have some exciting news to report!! As many of you already know, being outdoors has always been very important to me. There is no holier place for me than the depth of the woods, surrounded by Nature. I have not been camping since getting sick. In fact, there is quite a dissertation in my application for social security in regards to the things I no longer can do, and camping is a big part of that. There is just no way that I could withstand the amount of work it would take to set up camp, let alone sleep on the cold ground, be without heat or cooling (whichever the case may be) or especially be any distance from a bathroom.
So this is my most recent anniversary gift (coming up on June 4th!)...
Completely loaded with one of these... ;-)
...and one of these...
....and some of these...
...and air conditioning...and heat...and all the amenities of HOME, right there in the woods with you!!!
Now, in my pre-illness days, I would have shunned this whole camper idea with all the piousness of a die-hard naturalist. But today....this little home away from home has made my dream of being out in the woods a reality again.
Did I mention I have the best husband EVER?!?! Just can't imagine how I ever got so blessed.
So, our first attempt will be this weekend, about 15 minutes from our real home as to not travel too far away this first go-around. I can hardly wait. Now THIS will most surely give me something to write about!
Until then, peace to us all ~