At last posting I was headed for Baltimore for what I thought would be a few days. That turned into a week long trip that entailed meeting/adding a new doctor to my medical team, a horrible blood draw experience, a kidney biopsy, and an overnight stay in the hospital - ALL while spending the week in the company of and catching up with a dear friend. Whew - what a trip!
As always, the staff and doctors I dealt with at Hopkins were wonderful and I am always sure to remember, that, while I DO have Scleroderma and would rather not, I am so very very fortunate for the sequence of events and timing that led to my diagnosis 16 years ago (16? Wow!!). It all aligned to get me immediately to Hopkins with THE best doctor in the field of this disease. THAT scenario was, I believe whole-heartedly, THE key domino that allows me to be sitting here writing this post tonight.
I apologize. I'm rolling up on the 12th anniversary of the life extending high-dose Cytoxan treatment that I underwent in 2004. I tend to get a little emotional and retrospective about it all.
OK! Back on track ... All turned out well, no new "Scleroderma" related issues - so-to-speak. There continues to be some unexplained protein in my urine and some other blood work that causes an eyebrow to raise, but nothing to be panicked about. Instead, some things to keep a very close eye on and monitor frequently.
A week sitting around with funky blood test results looming, waiting for biopsies, and all around feeling exhausted and kind of like ass of course put my brain in over-drive. I'm not a panicky person. I don't easily go "there". It was all just an eye-opener that I have been off my game for far too long. I've been talking about getting back on track, and yet, hadn't done but a day or two here and there to actually GET back on track.
Food. What I put into my body has a HUGE affect on my disease. Some people can get away with eating "junk" with seemingly few to no ill effects. (Or so they think) For me, that's not the case. For a few years, I was ON IT. I was miss clean eating queen. Then, I stopped. We won't get into the how or the why. I just did. Sure, I eat clean here and there. I tell myself the lie of "I'll start tomorrow" or I justify this and that.
WHAT THE FUCK IS MY PROBLEM??? Why would I wait for funky blood work and possible kidney issues to snap me back to reality?
Again, we won't get into the how or the why. I just knew I needed to change things. I talked about it. I made half-ass plans. I "tried" here and there. That was in September, y'all! Two months ago. I still, for whatever reason have failed to fully get my shit together.
Do to the myriad of issues that surround my digestive process - I just have no desire to eat. None. My esophagus doesn't always work properly, so just getting food into my stomach without it getting stuck can be less than ideal. Then, once it's in my stomach, I have a lazy stomach that doesn't process it out quickly. One meal can sit for quite some time. Into the next day. I literally can go days without being hungry because of this.
I weigh 95 pounds. On a good day. That's not healthy. So, now I've been reminded, again, that I need to get healthy food into my body to help it to heal, fight off any other issues that can be lurking, and to serve me better ... and yet ... I did nothing more than think about it.
After walking away from dinner last Sunday feeling physically and emotionally crappy - it hit me and I proceeded to have a full-on meltdown in the shower. The ugly crying kind. I'm not making any progress because ...
I could care less about food. Because I'm not hungry, I have no cravings. Nothing "sounds" good and therefore meal planning becomes a chore. If I get through the meal planning, the idea of prep work for food that I really no longer enjoy eating or may make me sick later - yeah, not what I want to do. Finally, sitting down to shove food into my pie-hole when I'm not hungry or craving it - makes it not taste good or an enjoyable activity. I leave most meals feeling underwhelmed and like I could have done something different with my time. Aside from good conversation, I am getting zero pleasure from any given meal.
Time for a new approach. Not really new. It's one that I discussed with "The Man" when I was at Hopkins in August, however, like I said ... just didn't take hold.
If it's broke - you gotta fix that shit!
Last week's realization of "why" I'm "failing" put me into gear. Albeit slow gear, but into gear. I spent the week researching recipes for smoothies and green juices - foods that my stomach can hopefully process more quickly and with less effort. I wrote my plan. I rewrote my plan. I researched more. I wrote the plan again.
Likely WAY more effort than need be - however, if I want this to be a success, I have to be meticulous and organized. This process will involve more that just a healthy new eating plan for myself, my roommates want to take on a clean diet as well and since I do the dinner cooking around here, I'm ultimately taking charge of everyone's food!
Today, I went and bought food. All. The. Food, y'all. I know that eating clean can be pricey, so I tried a new store that has been toted as having healthy options and produce at reduced prices. If it ain't broke, don't fix it mistake # 1 for the day.
I had no idea that changing something as simple as where I buy my groceries would be such a pivotal point to my day. Holy hell, was I NOT ready for that?!?! It brought on an anxiety I had NO idea that I had! I managed to finish the trip with my composure and a couple of bags of good buys and then got to the car and proceeded to have a full on cry. (Is this my new Sunday ritual? LOL!)
Why the anxiety? The store wasn't organized the way I am used to. There were WAY more people than at my store and while there were some good purchases, there just wasn't "my" stuff.
Then, the thought of being freaked out over something as "trivial" as a new store made me more concerned and I started worrying that this is just a "control issue".
You see, since my roommates came, I have become very aware of the fact that I like things certain ways. I don't think that's uncommon and yet, I don't want to be perceived as having to have things be one way and ONLY one way. When situations change, like going from living alone to sharing your home, it can become very apparent when you observe or hear yourself sometimes. Like, "really? am I THAT uptight?" So, I'm working to let things that would normally "irritate" or "bother" me, go. At the end of the day, most of them really don't matter.
As I was in the car melting down and overanalyzing my discomfort from a "stupid shopping trip", I came to realize that I need to cut myself some slack. There are some things that I am stringent about. And that's OK. Some things DO HAVE to be a certain way. And that's OK. Not because I necessarily just "want" them to be a certain way, but because my life is easier to maneuver when they are. Sometimes it is imperative that things be the way I set them up. Just so I can function. I shouldn't care what anyone's perception is surrounding that.
So, I wiped my snotty nose on my sleeve, drove to my usual store and finished my shopping. Getting everything on my list. Then, I came home and emptied my entire freezer, refrigerator and pantry. I threw out almost everything that will not serve our bodies in a healthy manner and I reorganized the food to work the way I need it to. Certain items have homes in specific places so that my hands can grab them easily and so that I can see the inventory of what's in stock without having to crawl on my elbows and knees.
I won't be afraid of being perceived as a control freak any longer. I am happy to work with and accommodate others on many things, but on some things, I just won't. I can't. It's that way for a reason. It works for me. Why change it and cause undo stress and anxiety?
If it ain't broke - don't fix it.