This morning I'm feeling the futility. I try so hard, so hard, to do the right things. I'm trying to be a good steward of the body God has given me and the resources He's provided. I'm trying to listen to all the medical professionals whose advice I've been blessed with. I'm trying to eat right and exercise right and sleep right and wear the right things and do the right things and not do the wrong things. And still, things seem to be heading downhill. Sometimes I feel like Jack's partner tumbling head over heels down the slope.
It's become a frequent, more-than-daily occurrence. My husband says, "You're falling apart!" followed by something between a chuckle and a guffaw. I am blessed and thankful to report that my husband's empathy and nurturing have increased by leaps and bounds. As a side effect of this, he is noticing more when things are not right with me. He sees when I get a certain look on my face, or it grabs his attention that I've paused overly long in my actions. He usually speaks up quickly asking, "What's wrong?" In the spirit of openness and communication I answer and that's when he laughs. Not because he finds it funny, because he doesn't, but because much of the time in our lives you either laugh or cry and he's not fond of crying.
Seriously, several times a day something different "goes out." That usually involves a sharp pain in the joint followed by an inability to use it for a bit. Call it a subluxation, call it inflammation, I don't care what you call it, it hurts, and it sucks. I'm walking through my day, doing what I'm supposed to be doing, and zap, I'm down. I can't predict it, I never know which joint it will be, and it turns out I have many more joints than I was aware of! Did you know each point of connection between the vertebrae in your back or a rib to your spine can have issues? I didn't, until they did.
I live with what I not-so-fondly refer to as my "Chronic Constellation." I have a post draft sitting in the works to cover that in more detail, but what it boils down to is I have several chronic conditions that interact with each other and wreak havoc on my body. These include, but are not limited to:
I think that's about it that I'm aware of right now. I guess it's enough! The challenge is that they all interact with each other to compound issues. So, for example, because of the PD, my nutritionist wants me to add collagen to my coffee and other foods to boost my protein intake. Because of my EDS leading to MCAS (and/or my CLD), I began having stomach upset yesterday that carried through to today. So, as I stopped to ponder it and put 2+2 together, I'm realizing that my stomach upset is likely due to the increase in collagen consumption as the two seem to coincide.
Also because of my PD, my nutritionist and my doctor want me to increase my exercise. I started attending gentle yoga classes a couple of times a week (ok, I've only made it once a week so far, but I'm trying) as well as getting up/out and walking 2-3 times a day. Sounds great, right? Shortly after beginning this, I started getting terrible, shooting pains on the top of my right foot when getting into bed. I learned some workarounds to decrease/avoid this, like flexing my toes when getting into bed, and moved on with life. Then this week I started getting shooting pains on the top of my left foot when I stretched out that leg! That was just frustrating! It didn't get better with flexing my toes, like the other foot did. It just made it so that I can't stretch out my left leg, say to put on a pair of pants or go down stairs. Stop and think, stop and think. Oh, you've got to be kidding me! My massage therapist pointed out to me this Wednesday that the ligaments in my ankles are retaining a lot of fluid, meaning they are angry and abused. What's different? the walking. What do my nerves pass through to get to the tops of my feet? My ankles. So now, the walking that I need to do in order to moderate my blood sugar, is destabilizing my ankles even further and causing terrible nerve pain in my feet.
After my brain surgeries, I began to put on weight. I didn't start eating more or exercising less. Ok, I was a little more sedentary for a couple of months, but overall things were pretty normal. My doctor determined that my weight gain was likely because of my dysregulated blood sugar aka Prediabetes. So, she encouraged me to seek out a nutritionist and see about getting it under control. I kept track of all the data. I recorded every calorie and noted every activity. What did I learn? In order to balance my blood sugar, I need to eat more. So much for losing weight 😖
Oh yeah, and did you notice how each main point on that list ended in migraines? I've had one for a week now. Haven't figured out why or how to solve it. Can't take the meds to deal with pain because they interfere with my constant glucose monitor for my blood sugar (did you know acetaminophen would do that?). So, I don't have the 2+2 to share with you on that one. Just the migraine.
Here's the Thing: It's like no matter how hard I try; I just can't win. I can't seem to do things right. I do the right thing for one issue, and I cause a flare in another issue. It's enough to make a girl want to curl up in the corner and quit. But I won't, because I can't. I can't just give up. I will keep trying, no matter how futile it might feel.
Radical tumor removal is not always possible because of the critical brainstem or diencephalic locations of some tumors. Tumor progression and eventual death are likely in such patients. Stereotactic radiosurgery for pilocytic astrocytomas part 1: outcomes in adult patients Kano et. al. So my posts are usually preceded by a scripture verse, often an encouraging one. Today I needed to give you an insight into what I've been experiencing. From the time I was diagnosed with a brain tumor, about a year and a half ago, I was reassured that it was a "WHO grade 1 benign" tumor. I, mistakenly, took this to mean that it wasn't a big deal. Even when I was told in June that it had grown "slightly," I thought that meant they'd zap it with radiation and that'd be the end of it. Guess what, I was wrong. When my June MRI revealed growth, I was referred to the Tumor Center for treatment. Fearing a long, drawn-out process, I was relieved when they scheduled all my...
This incredible trip has taught me so much, and I feel like I'm just beginning to unpack it. I'm certain that these lessons will overflow into future posts as well, but I wanted to give you an introduction to the Community First! Village here in Austin, Texas. As shared on their website: Community First! Village is a master planned neighborhood that provides affordable, permanent housing and a supportive community for men and women who are coming out of chronic homelessness. A development of Mobile Loaves & Fishes, this transformative residential program exists to love and serve our neighbors who have been living on the streets, while also empowering the surrounding community into a lifestyle of service with the homeless. This is the actual truck originally used in street outreach, now retired as a decorative memorial This amazing endeavor began over twenty five years ago. As a part of their street outreach, Alan Graham and his partne...
TLDR, just want to donate So this is a difficult post to write, probably even more difficult than figuring out how to tell people I had a brain tumor. I HATE asking people for money, for help, for most anything really - except prayer, I'm pretty good at asking for that! Here's the thing, I don't NEED money. I'm not looking for donations for a huge fundraiser like the 3-Day (did that a long time ago). I'm not going on a mission trip. But I am doing something new, something I can't do without help. In this eye of the storm season I'm in, I've become positively obsessed with travel. The thing is, travel is expensive and while I could just spend our savings to do what I want, that wouldn't be great stewardship of our future and hopeful retirement. So I've been learning about points and miles and the best way to get return towards travel with the spending we're doing anyways (like paying bills and buying groceries). The thing is, to really make th...
Thank you!
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