There are few words that scare me more than “GLUTEN”. Getting glutened (accidentally ingesting gluten) is like eating poison due to both Celiac and Gluten Ataxia. I therefore unashamedly take OCD-like precautions to avoid getting glutened for survival’s sake; I’m no masochist.
But I think I’m finding there’s one word that is perhaps even more fearful than gluten. This fearsome word is “spread”. For folks who have CPRS or RSD, “spread” refers to the disease spreading to another area of the body. Typically spread occurs first in the effected limb(s) where the disease may spread beyond the area originally injured. While it is rare of spread to occur without injury to a new uninjured area, it is possible.
I’ve been telling myself through the process of accepting my newish diagnosis of CRPS/RSD that I really don’t want to become one of those people who has CRPS and who is constantly looking for signs of spread all over their body, who seems obsessed with whether or not they are getting worse or it’s moving to other areas. That just seems like a miserable place to be both mentally and emotionally, and as there’s little one can do to prevent spread besides avoiding doing dumb stuff, moderate exercise, desensitization and taking vitamin C. These are all important steps which I am taking to improve and/or maintain my own health.
I’m aware of a few times I’ve hurt myself – cutting my finger in the kitchen, falling when passing out or just falling when falling (I’m skilled at that), running into doorways (whoops!)…or furniture – and not developed CRPS in these areas of injury (THANKFULLY!). I’m also aware of times I’ve been injured which I believe have lead to worsening of my condition, especially the car accident I had on November 4th, 2007. That accident changed my life significantly as I developed disabling chronic low back pain and sensory (touch sense) changes from my low back throughout my thighs which had not been there before. In fact, it was after that accident that I saw a major decline in many aspects of my health and a serious increase in my pain for which doctors could give no explanation – a bunch of MRI’s and CT’s plus X-rays were ordered showing only mild Scheuermman’s disease which I’d already had before the accident. I also feel like my sudden worsening of RSD on December 2, 2012 is an example of how little injuries can worsen the situation. So I have experiences of injuries which have not caused the CRPS to spread or become worse, then other injuries which have.
I suppose just being aware that injuries can now cause CPRS to take up residence in other areas of my body is a new reality I must learn to live with. It’s not going to change. I do need to be more careful. My desire to learn some seriously useful skills and tricks with my wheelchair is a bit dampened by all of this; I’d need a lot of help. My crazy-hard workouts at the gym that push my body to the very edge also have to be tempered. Stairs? I’m more careful than I used to be, allowing myself to no longer feel guilty for taking them slow and one at a time. I’m not freaking out, however, when I get a paper cut…almost not freaking out anyways (or if I do, I don’t admit it to anyone!).
Lately I’ve been having some new problems with my arms, and these problems are scaring me. My veins hurt. I know that sounds weird, but I’m quite sure it’s true – my veins hurt. Whenever my hands are below my heart level, my veins hurt. My right arm is worse and it’s been changing colors, mainly mottled and red. Gratefully my left arm isn’t changing colors. I’ve had a bit of nerve pain in my right arm, and this is common; it comes and goes for me. Unfortunately I’ve had some hypersensitivity (nothing comparable with my legs, but noted) on the dorsal aspect of my right arm. These symptoms are eerily similar to what I experience in my legs though they are currently mild by comparison. But they are new problems that I had not expected before and I wasn’t aware of any injuries in particular to bring them on. I’m being careful not to overwork my arms now at the gym and I’m also watching out for overuse injuries (common in wheelchair, crutch, and frequent computer users – all of which I am). Hopefully this is just some weird blood pooling issue which is common in dysautonomia, for example, rather than a CRPS spread. I need to try to push the later possibility out of my mind. I’d really like for this whole “weird stuff happening with my arms and hands” issue to go away! I feel like I just don’t need the stress.
So I’ll try not to freak out and keep reminding myself that God is in control of every aspect of my life. He’s the one in charge of keeping this heart beating, these lungs breathing. He’s the one in charge of my CRPS/RSD and all my other diseases and He will Himself set the boundaries for how far this may progress. Job 38:11 makes it clear that God establishes boundaries. God’s boundaries are established in the world, in His creation, among His peoples and his peoples’ enemies and their lands, in the discipline He meted upon the people of Israel so that a remnant would turn back to Him and not be utterly wiped off the face of the earth.
12 Yet God my King is from of old,
working salvation in the midst of the earth.
16 Yours is the day, yours also the night;
you have established the heavenly lights and the sun.
17 You have fixed all the boundaries of the earth;
you have made summer and winter.
7 He stretches out the north over the void
and hangs the earth on nothing.
8 He binds up the waters in his thick clouds,
and the cloud is not split open under them.
9 He covers the face of the full moon
and spreads over it his cloud.
10 He has inscribed a circle on the face of the waters
at the boundary between light and darkness.
22 Do you not fear me? declares the LORD.
Do you not tremble before me?
I placed the sand as the boundary for the sea,
a perpetual barrier that it cannot pass;
though the waves toss, they cannot prevail;
though they roar, they cannot pass over it.
23 But this people has a stubborn and rebellious heart;
they have turned aside and gone away.
24 They do not say in their hearts,
‘Let us fear the LORD our God,
who gives the rain in its season,
the autumn rain and the spring rain,
and keeps for us
the weeks appointed for the harvest.’
These verses are also a good reminder that God’s display of Himself through creation should leave us speechlessly awed, feeling small, shaking a bit in our shoes because of the glory and power of God. Actually, perhaps we should just take our shoes off entirely and say “this is holy ground!” (Exodus 3:5). Jeremiah 5 and Romans 1 make it plain that the revelation of God through Creation is enough to condemn unbelieving men.
18 For the wrath of God is revealed from heaven against all ungodliness and unrighteousness of men, who by their unrighteousness suppress the truth. 19 For what can be known about God is plain to them, because God has shown it to them. 20 For his invisible attributes, namely, his eternal power and divine nature, have been clearly perceived, ever since the creation of the world, in the things that have been made. So they are without excuse.
I too am without excuse when I fear that which is subservient and bound by the eternally powerful and sovereign God I serve. Help me, Lord, to recognize your sovereign rule over everything from how far the waves may come up on the shore to how far this disease may spread of how severely it may affect my body. Cause my eyes and heart to recognize your eternal power and to see its evidence all around me daily as I go about the business you have given me to do. Help me to rightly fear you so that I may gain wisdom (Proverbs 9:10; Psalm 111:10).
1 God is our refuge and strength,
a very presentb help in trouble.
2 Therefore we will not fear though the earth gives way,
though the mountains be moved into the heart of the sea,
3 though its waters roar and foam,
though the mountains tremble at its swelling.