The fight goes on. Three years this past December.That’s when it began.
Three years and sometimes it’s all I can do to cling desperately to the final few threads of hope that someone, somewhere might have an answer, might have a way to alleviate the ever increasing misery. I hang on because I have plans. I hang on because of my dreams. I hang on because I have to. I hang on because of you. I need to keep fighting. Keep fighting, keep experimenting, keep my belief that one day this will end as strong as I possibly can. I recently for the first time went against everything that the dermatologists recommended (tepid baths, moisturize with this crap or that) and in desperation took an epsom salt bath as hot as I could stand to draw the fluid that was leaking out all over my body completely out… and it worked. Sure, my skin was as dry as the sun cracked desert, but for the first time in months I didn’t need to continuously peel the shirt from my back, didn’t need to put layer upon layer of clothes on just to stay warm – and though my skin was insanely dry, I didn’t constantly itch. For the first time in three years, there was progress. For the first time in far too long, I was dry! Listening to my own instincts and with a solid base of logic I had done something that the Western doctors had not been able to with all the medications they threw at me – and the medications to combat the side effects of those medications. Don’t get me wrong – I love my primary care doctor dearly. Over time he has become a very dear friend and the only person that I felt I could bother with my misery, but unfortunately he is limited in what he can do – and all we’ve done is go around in circles. ‘ There were times that I did my own research, but unfortunately that only led to supplements & herbs that, while looking incredibly promising, were far beyond what I could afford on a regular basis. I was stuck completely in my own silent hell. Until. Until Bobzilla went completely against my direct request to keep this quiet and broadcast that I was being moved into a hospice/respite care facility on friggin’ Facebook. Until Rusty made a snowball, and GoddTodd kicked it down the hill, and Bianca called in other troops to get together & purchase me a Kindle for the holidays (Which I f’ing LOVE, by the way). I don’t know what happened, but some extra funds came my way from some incredibly generous people – people I haven’t seen or talked to in months or years. As it always does, everything lined up perfectly; My new belief in my own instincts, that goddamn thing on Facebook, and having a little extra money. I re-instigated the research, but this time, thanks to absolutely amazing people in my life, I was able to buy the things I feel I need – first to help with the Hep-C and then after a bunch more research… something that looks incredibly promising to help – and maybe even eventually stop, the Weeping Edema. I stopped the unnecessary medications on December 27th, & on the 28th the stuff for the Hep-C arrived. Soon, either today or tomorrow, the supplements for the Edema will arrive & I’ll begin taking those and hope for the best. Unfortunately money is still tight and they aren’t too cheap – but hell, if they work… gods, I can’t even imagine how glorious it will be to have my life back. I’m almost afraid to hope for it. I’ll figure out some way to keep up on the supplements, as I will definitely need to. Supplements, potions, lotions, shitloads of meditation, breath work – though I do need to work on discipline. I intend to do shitloads of meditation and breathwork, but, ummmm… yeah.
To top it off, I’ll finally be getting somewhat affordable regular acupuncture treatments thanks to Whittles bringing it up to another friend of ours, which I can’t express how excited, grateful- and all those good things am.
Everything happens as it should. ‘
It’s been a fucking long, frustrating, painful, bloody & insanely lonesome three years, and if it wasn’t for my Dr.s and especially Isa, the only friend I know who can empathize and was a shoulder to cry on more than once – if it wasn’t for them I don;t know if I would have had the will to keep going. I’m not sure how many times I looked at a full prescription of morphine knowing how easy it would be, but it wasn’t just a few. ‘ Now, I think to a note a very dear friend wrote me years ago, which I still have pinned to the wall in my motorhome and branded into my heart: “I Believe You can Fly.” I’m beginning to believe it again, too. I can never thank anyone, all of you, enough – all I can do is do my best and everything I can for anyone else… and if I ever feel lonely again, someone smack me, okay? Our interweb has been down so I’ve been depending on a very spotty connection with the cafe on the corner, so I’m going to post this while I can.
‘ The fight goes on, but with a new light inside of it, and a new wind beneath my wings. I believe that the light and the lift are a result of you – the amazing people that I am so incredibly blessed to have in my life… and the dreams that keep me alive. ‘ OH, and by the way, Bobzilla’s Birthday is today, so send him a few emails each , okay? I’m going to make him pay for going against my wishes with as much love as possible.