Three and a half years since my last blog post. The list of reasons that I stopped writing is quite long. Through diet I had learned how to manage my condition and didn't feel like there was a lot to share. Then, I just wanted to live life and not write about every Scleroderma event. Sometimes sharing the ups and downs can be daunting. Sometimes, I just want to deal with it for what it is, not dwell and I guess, in some way "forget about it" - not that I can.
Then there was a divorce and life got hard. Then "hectic" and busy and wonderful. Any Scleroderma related issues that have come, haven't been anything new. Just recurrences of the same list of issues I've written about in the past.
For the most part my Scleroderma has been very manageable. Typically just dealing with things that arise from the damage previously done, but no new Scleroderma activity. It's expected that some things will continue to degrade without new activity just by virtue of the damage already done and the aging process in general. So, even without new activity, the roller-coaster continues on the track.
I'm still on only 3 medications. One for my thyroid and two for my heart. I would like to not take these, yet, in comparison to the 23 pills I once took ... I won't balk at the three. My diet is key here. I'm so grateful to have learned this!
So, why am I dusting off the pages of Sclero Scoop and giving you something new?
Because it's awesome and the world needs to know and every Scleroderma patient needs to be privy to this!
A little back story ...
In early March, one of my closest friends, who also happens to be my massage therapist, opened Kodawari Studios where I act as the "behind the scenes" magician that manages tasks that she doesn't have the time for. I put 48 hours into a 24 hour day. I'm the mouse in her pocket. The Pinky to her Brain. Or is the other way around? Either way, one night, we WILL take over the world. Or not. It might be too much work. ... Opening a business is no small feat. It's a lot of work, a lot of hours, a lot of stress, a few tears and sometimes a whole lot of "WHAT THE FUCK?" Having this new drive, tasking, and passion has been so good for my soul. I feel a purpose again. A purpose beyond being a woman managing a disease, a mom, a fur-mom, a decent human being, enjoying this life I was given, and doing what I can to be a positive influence for others. It feels good. It feels great. Emotionally.
Physically, it's exhausting.
In true LoJo fashion, I threw myself into this whole-heartedly and let my personal care and well-being take a backseat. My healthy diet and lifestyle were already challenged over the past few years and over the past month have just slid right off into the gutter. Fast food. Soda. Sugar. Alcohol. All easy items that require no prep work for my crappy ass hands and my exhausted body.
I knew better. Still, I didn't listen. I poked the Scleroderma bear. Quite probably triggering a flare-up.
Starting last night, the dreaded "itchies" returned. The "itchies" that freak me the fuck out. They freak me out enough that by midnight I was in the midst of a full-on panic attack. Scratching my body, crying and hating on myself for going down this road. I have a disease that would like to kill me and here I am fueling it? *palm to the forehead* I made a plan that "this stops now" and I'm getting back on track immediately. I have enough struggles on a good day that I'm not adding to it and creating an extended calendar of bad days to deal with. Finally, at 0200, I finally calmed and exhausted myself enough that I was able to fall asleep.
I woke up early to feed the horses, which starts any morning off on a great note. Except that I found myself itching and scratching along the way. Trying to remember to not let it get me and to remember the plan, I plowed on through....Prepping my food for the day, not rushing in order to prevent banging my hands around and causing more aches and pains, trying to not get frustrated with all the normal struggles that just seemed to be piling on by this point. It's Wednesday after all. Wednesdays are massage and chiropractor days. As painful as both have been in recent months, they really do help keep me moving. Wednesdays are a much needed and beneficial day each week. Last night we decided that I should add float therapy to Wednesday's line-up, with the imagination that I would get some awesome relief for these achey joints and followed by massage and chiropractic care, I might see some good results.
By the time my float time arrived, I was mentally ready. I was stressed, overwhelmed, achey, exhausted, bordering on a meltdown and just needed to start this part of the day.
I'll admit, though excited, I was also a little nervous. What if I got all freaked out in there? What if this? What if that? In addition to just awkward body mechanics in general these days, my right shoulder is really problematic. The whole shoulder structure is compromised due to fibrosis of tissues, tendons, etc. There is shortening of muscles, and alignment issues in my spine and the rib cage under the shoulder blade - all as a result. I can't lay on my back, I can't lay on my stomach, it's difficult to reach across my body with my right arm. I can't reach behind me. I can barely touch my right ear and I can only occasionally touch the back of my head. How was this all going to play out in the pod?
The float experience was pretty dang awesome. A little trippy at first. As soon as you lay back in the water, that's it, you're afloat. No effort. I haven't been able to comfortably lay on my back in ... I have no idea how long. After a I realized I could just "let go" and let the water do it's job, I just floated. Blissfully. In essentially zero gravity for an hour. My joints didn't hurt. They felt 'lighter". My skin wasn't itching. I fell asleep. I didn't have reflux. I didn't feel the need to move around. I just floated. I exited the float feeling more relaxed, lighter in my joints and just happy at noticing a physical difference. IN ONE HOUR.
Immediately following my float, I walked down the hall and got on the massage table. Here's where the sheer awesomeness of that float therapy became the spotlight for the day. In the past 2-3 months, when I get on the massage table on my stomach, I have to have a towel under the front of my shoulder because it won't relax onto the table without excruciating pain. Today, I was flat on my stomach, shoulder on the table, no pain. I could feel tension, but no pain. For the first time in a very long time, there was virtually no pain during my massage. Annette is not gentle with me - I can't afford her to be. I need her to push my limits and work my muscles as much as possible to keep them moving. Most times I tell her things like "Why do you hate me?" Followed with a lot of other colorful words and sometimes tears. In the end, I always feel better, but the process can be grueling. Not today. Today, I enjoyed every stinking second on that massage table. She was her normal aggressive self and I wanted more. It felt good. I was giddy on that table today.
I left the massage and headed down the street and less than 20 minutes after the massage, I was on the chiropractor table. Typically, as she starts feeling the muscles along my spine, there are a couple of spots that make me grimace and all but shoot off the table. In recent weeks, I have left there feeling beat up and ready to cry. Later, I always feel better, but the process to get there sucks. Today, not the case. Not once did I feel any of the pain I normally feel. She adjusted me and I was ready to go. Just like that. She said she could feel a huge difference in the muscles along my spine. Normally they feel like hard ropes to her and she has to work with them to manipulate my vertebrae. She said that tonight they felt soft and squishy in comparison.
With all of that said, as I write this, I can feel stiffness (no real pain) returning to my body and I have been mildly itchy tonight, but nothing more drastic. I am tired and imagine I will be crashing hard when I close this laptop and make my way to my bed.
Due to the drastic and almost unbelievable relief I experienced after only one hour, we've decided to put a test scenario together. I'm the perfect test case, after all. I am going to float every day for the next 6 days and write about the experience and results. So, stay tuned for tomorrow's report!
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