Today’s Progress

Posted: May 10, 2013 in Uncategorized
Tags: , , , , , , , , ,

Today started a bit slower-moving than yesterday, as my body reminded me that it was time for payback from yesterday’s walking.  I was still up by 7am, out the door by 8am, and at the orthotist/prosthetist’s office in Raleigh by 8:50am.  I have two orthotist/prosthetists in different cities; I bounce ideas off of them both, typically using one for compression garments and the other for footwear and braces.  Today’s appointment was for compression stockings.

I wear the compression stockings daily because they help reduce the swelling in my legs which then reduces burning, dystonia, and other problems.  To don (put on) or doff (remove) compression stockings, however, is no easy task for the average person with good dexterity, but when allodynia (painful hypersensitivity to touch) causes every little nerve fiber to scream at the top of its lungs with the slightest contact, this process is another ball of wax entirely.  I didn’t bother to do my desensitization exercises this morning; I knew what was ahead.

The ladies at the office had ordered four pair of stockings for me to try.  I had to determine what worked best for me before leaving with a pair because once the stockings exited the front door they could not be returned.  It was very kind of them to order so many for me to try and I was hopeful that I could make this a two-stop “shopping trip” for my stockings.  The first trip, a week and a half earlier, had been for sizing before ordering, and I felt like powning the person who was measuring my legs with the tape measure because the tape measure was touching my legs…oh my!  “Just go quick!” was about all I could find the words to say because the discomfort and pain was so intense; I was surprised I found words at all.

I tried on several pairs, the donning and doffing of each stocking sending my pain to a higher and higher level.  It was *me* touching my legs this time, not them.  But dragging those tight stockings across my skin….ugh.  I let out some of my best Fred Flinstone cuss words; “rackin’ frickin’ rackafratz” and “oh gee sheesh!” and eventually an “Oh God, Help!”  I felt those animal-like fight-or-flight urges to run or defend myself, but punching myself would have been counterproductive.  When I accidentally touched my legs, I felt a rush of anger at myself for making my pain worse because I wasn’t being careful enough to look more closely at what I was doing.  My hands shook and my body trembled as I had to touch my toes to move the stockings into position.  If I had only had to do it once or twice, it would have been different.  Multiple attempts wore me out, however.  After putting on and taking off a few, I said, “Don’t mind me, I’m just gonna crumple for a minute,” and I proceeded to crumple indeed, resting my head in my arm on my lap and just breathing through the pain as best I could till it calmed down a notch.  I revived slightly and continued on.

The seams in the closed toed stockings touched my toes and as I walked they shifted every so slightly, rubbing my toes.  I couldn’t wipe the discomfort off my face.  “No, that’s not going to work,” I said.  We went back to the open toe designs which I had never used before today.  I was relieved because when I walked, they didn’t ride up my foot or wrinkle as I had expected.  They are harder to get on and off, strangely enough, because of the elastic band at the end.  I found they took more positioning (and toe touching) to get on in the right place, but I was happy with them once they were on.

I decided to take one pair home and test them out, since I’d be stuck with them, then call back next week to decide if I wanted to get the second pair ordered just like this pair.

As I left, I saw a sandal made out of leather and what I thought was a steel shank on bottom.  It appeared handmade so I asked about it.  Unfortunately it was made out of a flexible material on the bottom, but I asked if something like it could be made with a carbon fiber plate or steel shank and have a rocker bottom added.  Ugly?  Yes.  Functional?  Definitely!  And if it could be done, one pair of sandals made this way would last me probably 5 years before needing to be wholly replaced.  The rockers would need to be replaced every 1-2 years, but that’s not expensive by comparison.  Jordan and Amy told me it would mostly just cost whatever the parts were to make such sandals and I decided I’d investigate it more when I had time and energy to do so.

I drove home listening to music but I was too tired to sing out loud so I just sang in my heart with the windows down, the wind blowing over my dome, the sun on my face.  It was nice to be outside.  Thanks, God, for the provision of the compression stockings and for getting me through the pain of trying them on.  Please help me get home safely.  Please keep Mike safe too.  Thanks for the sunshine.  And please forgive me for thinking the words that Fred Flinstone didn’t say aloud and thanks for not letting them slip out of my mouth in full form either.  

When I arrived home, I stopped by my neighbor’s house to see if she’d seen Mike.  Nobody had, so I told her I was concerned.  Then I knocked on Rachel’s door to tell her she had a package.  I came in and we talked for about an hour while I ate a snack and planned out the rest of my doings for the day.  It was nice to have some time to enjoy her company during what was becoming a very bus day.  I needed the mental mini vacation.  Mike knocked on her door looking for me.  I was so happy to see him and know he was alive.  He’d had a rough week, so I told him I had been concerned and wanted him to stop by when I was home.

I had to leave to get an hour of doctor-related phone calls done before I trekked off to my second doctor’s appointment at 1:30pm.  There had been a misunderstanding with a medication I take regularly and I was down to three doses left.  I’d given nearly three hours of time in the last week to sorting out the issue between two doctors and my primary pharmacy but it was still a jumbled up mess.

I came to my primary care doctor’s office with a rather short list of questions.  I’ve become better at determining which questions need to go to which doctors or specialists so as not to waste their time or mine.  So, what was the diagnosis of the day?  A less than lovely urinary tract infection.  You’d think I was actually trying to collect new diagnoses by how successful I normally am with it!

Infection = antibiotics = major gut problems for a month or more.  I left her office with more pharmacy scripts in my hand and prayed.  Lord, you know what antibiotics do to me.  Would you give me wisdom about this?  I need to know if I should take these medications or if this is something you can lead me in treating naturally.  I made my third trip to the pharmacy this week; everyone knows me by now.  I filled the prescriptions, but decided to start off by drinking 3 TB apple cider vinegar in fairly high doses mixed with water every 4-6 hours for starters.  If the symptoms worsen at all, I will immediately take the medications.  Otherwise, I’ll give it up to 2 days to see if symptoms are improving and if not, I’ll again start the medications.

The good news to all of this is that it means the Lyrica, which has been helping with my burning pains, is not causing my bladder symptoms.  I wasn’t sure if there was a connection between the two, so I had chosen not to increase the dose of my Lyrica even though Dr. Z felt it may help with pain relief.  Now that we know it’s a UTI causing these symptoms, I can call her back to let her know and see if we can go ahead with increasing the Lyrica and hoping for a bit more relief.  I thanked God for this good news.

Back home again, I took some time to eat without rushing, then began working on more phone calls and paperwork.  It never ends – it’s like death and taxes.  Then it was time to start my part-time job, probably the most “relaxing” and predictable part of each day, oddly enough.

Tomorrow I’ll be working about 7 hours, and I also need to get more phone calls made to doctors.  At some point it would be helpful to go shopping because my list is getting a bit long.  Don’t know where I’ll fit that in, so it may just have to wait until Saturday.  On Sunday I plan to crash and burn; it’s already been scheduled.  🙂

Gratefully nobody has recently expressed to me the wish that they’d “been able to get Disability and would not have to work,” as if living with multiple disabilities is a cakewalk.  Oh, there are only a few things that steam me up more than hearing someone basically say they wish they were sick enough not to work a full time job and get their income from hard working tax payers.  EGADS!  I’ve chosen to work as many hours as possible for the last three years even though I could have decided to collect SSI along with my SSDI while NOT working, and I would be making as much if not a little more than I do by working my current job.  I’ve also decided to be proactive about my health management given that nobody can care about my health as much as I do, and nobody can be responsible for ME.  My commitment to my personal health care alone takes well over 40 hours per week.  My part-time job is added to that number.  I’m just preaching to the choir here so I’ll stop.  But if you guys ever hear someone say something like that, please let them know they’re not the plumpest blueberry in the bush, okay?  I thank you.

This evening, my right leg, which tends to behave more kindly than my left, began “waking up” to the harder realities of life.  Metatarsalgia.  It may not be a word that means much to the average Joe or Jane, but for me it can become a big problem.  It simply means pain in the metatarsals, the long bones of the midfoot.  I’ve had so many fractures in this area of both feet that I know the early onset signs like the back of my hand, of which metatarsalgia is one.  In December of 2012, my left leg began acting up badly with this metatarsalgia.  It felt like another stress fracture, but I also knew there was something much more going on.  The fracture was never seen on x-ray or CT scan.  I had not tripped, fallen, or caused any memorable injury to precipitate the pain, though just walking or standing too long is enough to risk fracture.  I was diagnosed with CRPS/RSD within a few months.  I flared without cause or injury according to my doctors.

Every time I get pains like this, especially in my right leg and all the moreso since December of 2012, fear grips me.  I’m afraid that the RSD/CRPS may flare up in my right leg as bad as it’s become in my left leg.  I already know I have RSD in my right leg; that’s undeniable.  Yet in my right leg, I feel there’s a grumpy sleeping giant.  I DON’T want to wake this grumpy giant, because then I will have to fight him every day for the rest of my life.  My right leg is also my driving leg.  I don’t yet have hand controls for my car.  If there’s any place where I’d expect pain to start that would cause a flare or progression of CRPS in my right leg, it’s in that metatarsal area.

What has been my response?  More prayer.  I wouldn’t know what else to do.  God, I know you tell us over and over not to be afraid in the Bible.  I’m afraid right now, however.  I need help not to be afraid about the CRPS getting worse.  Please help me because I don’t know how to help myself.

And with that, I’m putting this weary body and brain to bed.

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