Withdrawal

   Over the past few days, I've been asked by many people how I'm feeling - if I'm noticing a difference based on the new medication I'm on or not, usually followed by the question, HOW will I know it's working? What's interesting is the answer I have to give. I've been feeling fairly normal this past week...and that's pretty much the only way I'm going to know if the medication is working. I won't notice an actual change of symptoms per se, as one might expect; what I will "notice" however, is that I WON'T be having symptoms or full blown episodes. Yes, it does sound strange and kind of backwards from what you'd expect, but that's pretty par for the course in my life.
   Normal. To me, "normal" would be NOT constantly being afraid of minor activities throwing me out of commission for a few days due to immense swelling attacks. Normal would be NOT having bouts of sickness where my stomach does the weird, strange thing that it does - it's a sensation that I can't describe in words to anyone else, it's just a feeling that I have and I know what it is when it's happening. I used to get really frustrated with anyone who would complain about their lives being boring, or normal; it seems like a minuscule thing, but it's something that a lot of people take for granted, something that a lot of us aren't lucky enough to just have every day. Maybe it seems silly or ridiculous, but speaking as someone who would do unspeakable things to experience normal on a daily basis, if you're lucky enough to have normal - don't take it for granted, you don't know how precious it is.
   I'm not there yet, but I'm hoping (and the outlook finally is a really good one) that within a couple of months I will be one with the masses.

   The next piece of my journey is coping with steroid withdrawal and it's subsequent symptoms. Common withdrawal symptoms from steroids include weakness, fatigue and sleeplessness. Oh yes, count me in for the whole TRIFECTA. Add on top of those three, an emotional roller coaster and I feel like what I imagine a pregnant lady immediately going into menopause would be like hormonally, if such a thing were possible. I spent the majority of yesterday fighting off a teary break down, for no reason in particular - other than that I'm a week into knocking my steroid dosage down from 1.25 mg/daily, to 1.25 mg/every other day.
   Hormones are a finicky thing, and aren't anything to screw with. I'm psyched to be on this new journey and a lot of other things in my life seem to be falling in to place, so I'm on happy-high...but my medication is currently doing the emotional driving and dictating how I feel and what I'm able to express. I cannot WAIT until I reach the plateau I'm hoping is in my semi-near future; I'm sure Luke is right there along with me, bearing with crazy-girl syndrome in all it's glory, and being a real trooper.
   Hopefully I'll be able to curb the exhaustion, but I foresee a very restful next couple of months coming up. I'm not currently doing a great job of fighting off  the "hit by a bus" run-down feeling, as I write to you from the comfort of my bed, glass of OJ to my left and a sleepy golden retriever to my right.
   I have infusion number three tomorrow, flying completely solo and Ginny will be here later in the evening to discharge me from visiting nurse visits. I just have to keep on trucking through, beat the steroid withdrawal and then things should be smooth sailing from there on out.

   ~Somewhere between always and forever, Chelsea Leigh