& happy about.
My dysesthesia pain is currently manifested in the guise of an invisible, hot wet sock. No, I'm not really wearing said sock. Just the phantom heat that my leg reports I'm enduring.
I remember when this all began, I would ask friends or family to compare the temperature of each leg. "It feels hotter", I would say. They kindly obliged me, comparing limbs. The truth was there is no outward sign of the things my nerves are doing.
It's a little nauseating. It's definitely irritating. I got a good chunk of housework done before this kicked in. Having spent 3 hours at the laundromat yesterday, I have oodles of ironing to tackle tonight & tomorrow, in preparations for a house guest this weekend. Luckily, I washed every last sheet & towel, so I'm prepared.
Finden, my faithful, feathered friend had a bit of a rough go if it today. He actually lunged at me, beak open in defense when I past his cage. He shrieked & postured, flashing & pinpointing his eyes, all but saying in plain English, "I am not a happy bird at the moment!" He did allow me to give him a scritch on the head before he backed deeper into his cage. I offered him a lasagna pan of bath water, & he appeared soothed for the moment, soaking his feathers thoroughly.
I'm going to chalk today's antics up to the bevy of crows foraging on the lawn in Finden's obscured view through the front window. I've read that every day with a parrot is a new day, so we'll see if he feels more like himself tomorrow.
I was having some reservations about my Copaxone injections, but as told by neurologist, it's really my last at-home therapy option. Shared Solutions, the 'support' group by the manufacturer, if you will, contacted me last Thursday & quizzed me about my experience thus far. The woman's comments to my responses were the kind I hate: repeated, statistical facts regarding pre-market study data. This lobs me in with everyone else as a number, removing my individual needs & just compares me with percentages. The bottom line was they felt I should stop the injections & speak with my doctor.
So, for 5 days, I didn't inject. The lumps & bruises on my legs & arms began to subside, J & I were both pleased to just say good night & go to bed. No anxious injections to be done or fussing with pain for half an hour. Of course, the doctor said take some Tylenol PM half an hour before the injection, the turn over & go to sleep.
Easier said than done.
Even with diphenhydramine taking the edge off, big fat teardrops rolled down my hot, flushing cheeks after the injection, as redness bloomed in a welt on my thigh. Just seeing my flesh bubble up in a near perfect circle is unnerving.
My emotions rise & my heart pounds. Even in my husband's arms for comfort, I cannot ignore the sound of my pulse thumping so hard in my neck I can hear my skin brush against the pillowcase. I don't know that I could have gotten this far without him beside me.
In this wash of anxiety, emotion, pain & rushing of pulse that I experience (almost nightly, mind you), my thoughts go to what's really going on. I'm upset that since I've come to a truce with my body, I'm breaking it somehow with these drugs. I have accepted-- maybe with the assistance of MS-- that this is me. My bones are soft, my head is hard, my nose is pointy & almost elfin. I don't tan, & I no longer try. I require a lot of sleep, rest, calm. I can't live on candy & toast, I have to nourish myself properly. I want my body to last, so I can inhabit it comfortably, to live my life with J. as long as I can.
Can I do this when I have to inject, ingest, compounds & chemicals & pills that have questionable efficacy over time?
I don't know what options I truly have. Well, that's not 100% true. I don't know what feasible options I have, or which ones I should exercise. I am curious about holistic medicine, but my one again, finances make that a little more difficult. I doubt insurance covers much of that. I bookmarked a page of a local facility that integrates holistic & 'traditional' medicine.
Is there something out there that will just allow me, not MAKE me, feel normal & pain free? Not groggy or drugged, nauseated or wired. It sounds like I want a lot. It really shouldn't be so much to ask to just want to feel good again, consistently.
Or is it?
Guess who had fleas? Surprise, surprise. His previous owner must have applied flea meds when she cut his nails.....a year ago? Judgments aside, I suppose, he's a sweet little dog & I'm glad J. let him stay for the time being. I hope someone awesome comes along to adopts him.....
I know, I should stay away from Craig's List. My husband wants to block it from my computer. I found an ad that said simply, "Japanese Chin-- FREE". I emailed immediately. Then I ended up going to meet the dog & the owner today. Her reasoning was it was her grandson's dog, he wasn't paying it enough attention & neither was she.
This poor dog was a sad mess, of just neglect. He was fed, & sometimes pet, I'm sure. His coat is short, dry & matted in some places. His skin is itchy too, with signs of fleas at some point. He's thin, with his nails growing around into his paws. Still, his tail wags when he's spoken sweetly to. He hopped in my lap & offered bad breath kisses. I asked if he was available to me. The woman conceded I offered a good home, after about 30 minutes of chatting & my distractedly fretting over the dog.
His name is now Yoshi, which means good, simply because he is. He did yap & cry when he realized what was happening. At first I felt bad, but he wasn't wanted. I chatted to him over my shoulder as I drove home. A quick sniff of him for my own dogs, & then into the tub he went. Oatmeal shampoo & conditioner applied, I did the best I could to get the old urine stink of him that permeated the house I had just come from.
I cut his nails & trimmed his mats, all without a yip or gripe.
After a snooze sitting upright in my lap, he finally ate the food I offered him earlier & settled at the opposite end of the big dog bed from Sake, my own Japanese Chin. This is quite a privilege for Sake to allow an unknown dog on his bed without so much as a snarl. If you don't see the different 'masks' on their face & their varied bone structures, they might be twins:
Sake, 9 years old, is on the left. Yoshi, 4 years old, on the right.
do I really need to apologize to my blog? no, I don't. so I shan't.
today's blog entry is brought to you from lush & lovely Eugene, Oregon. having packed up our life on a whim & trucked north in late July, J. is flourishing at his new job while I hold down the fort & keep the dust bunnies at bay. we left one bird in California & added a new one to the mix-- a much better fit for everyone, indeed.
everyone, this is Finden.
I found Finden via Craig's List, where you're not supposed to sell pets, but you can charge a re-homing fee of up to $200. there's a dozen loopholes there, but the bottom line is I got an amazingly well-behaved, ~$600 parrot for $200. granted, he did need a thorough vet check, costing us an added ~$400. I guess that makes him a truly $600 parrot. even so! this little guy & I bonded immediately, & he's been a dream bird.
these days my MS is held at bay, but I've disdainfully hopped off the Tysabri train.
reports of new PML cases trickled to me on the internet, & I was naively disgusted when the "care line" offered by the drug company did nothing but damage control. in retrospect, I shamed myself mentally. i have been on the other side of the drug company game, keeping study animals alive for sake of the results, to help in pushing drugs through the pipeline. I felt that staying on Tysabri was gambling with my life a little more defiantly & helping prove their numbers for new, unsuspecting patients. I hadn't had any adverse affects, bu I was coming up on having used it for 1 year, not too far behind the new PML patients of 14 & 17 months.
with my husband & my father's blessing (my main supporters when it comes to the decisions involving my health), I planned with my neurologist to take a 1 month wash-out period, & started on Copaxone in the beginning of September. daily injections aren't awesome, but neither is the looming threat of a possible lethal, viral brain infection. my husband sweetly does my nightly injections with much empathy, which soothes a lot of the emotional pain each injection brings. I'm doing my best to stay consistent with the time & notation, but other than the lack of aesthetic my bruised & bumpy injection sites present, it's an overall depressing exercise.
some nights I cry in fear & anxiety of the future, imagining my body crumpling prematurely from all these drugs I ingest & inject. other times I bravely endure the pain, which I do my best to describe to my husband as "a bee sting on top of a Charlie horse." the heating pad suggested does little to soothe me, but I apply it any how, patting or smoothing over the area, as if it'll help.
despite some rough nights, I'm diligent in my optimism. I enrolled in school yet again, this time with a camouflage-garbed, tattooed 'cheerleader' on my side. (read: My Husband, J.) I keep the house the best I can. I have a real yard now, with a lawn to fret over, weeds to thwart & squirrels to shake a fist at. some days still yawn before me, long & lonely until J. comes home well into the evening.
I think that's all I feel like blogging about right now. I'll again attempt to keep this place updated. I'm leaving you with another picture of Finden, because he makes me smile with his silly sense of humor.