Life is about change.

…and death is the final stop.

samlevensondonotwatchtheclock
Since my last post (made oh so long ago, it seems), many things have changed.

My service dog candidate washed out,thanks to a bad puppy experience with a loose dog at the park that  he never got over, and is now just a large, goofy companion animal. He still does some mild command-tasking but I’m not sure he could ever be  suitable for PA. I feel like I failed at something very major, even though I’m no longer at the point that I need a service dog, but I’m not blind to the possibility that I may need one in the very near future, should I have another relapse. -1

I have been working on staying on Wahls Paleo / trying to go to Wahls Paleo Plus, but it’s tough to do when a) you’re not financially contributing to the household expenses (esp. grocery) , and b) everyone else in the house is blind to the benefit of dropping gluten, dairy, and refined sugars for chronic illness, much less the general health benefit for people with or without a chronic condition. (My husband is the only adult in the house who doesn’t fall under the “chronic” blanket, and I’m the only one who hasn’t been diagnosed with 2+ conditions.) 0

Also on the WPP front: it’s hard to transition to a ketogenic diet when you’re breastfeeding on demand. 🙂 We had a healthy baby girl right before Christmas, who is now 15.5 lbs, about 28″ long, and she eats like a BOSS. I know that breastmilk is keto genic already, and me being in ketogenesis shouldn’t have any negative affects on her, but trying to nourish my child while my body goes through a major energy transition doesn’t seem smart to me. So I oscillate, and wait. +1

I have been off any DMD since 11/02/14 – I have my last Tecfidera bottle, with the date, next to my bed to remind me of where I was, and could be again. Other than a few days of mild fatigue, I have not had any issues since stopping medication. It makes me wonder if relapses are more  the result of medication interference than the disease, itself, but that’s another post. +1

My journey to eliminate as many outside toxins as possible seems to be working, to a large degree – while my hair is too thick to tolerate no-poo, I only use a clean shampoo and locally-made goat’s milk soap; Crystal deodorant (though if anyone can recommend something like Primal Pit Paste’s effectiveness in the heat and humidity, I’d appreciate it); and Primal Pit Paste’s tooth powders. All these things make a difference. I’ve reduced my daily lazy in front of the television in an effort to increase my daily productivity. +1

I haven’t been to my neurologist in over a year, I’m ashamed to say. Our insurance has changed multiple times, and now that I’m back on a private plan, I may consider checking in just to keep from being fired. But honestly, I’ve had no need of a neuro telling me I need an annual MRI and bloodwork to tell me I should really consider going back on a DMD, even though I’m doing very well. -1

The humidity has skyrocketed in the past few days. It’s been unpleasant but not unbearable – so far. –1

I am positively terrified that this summer will send me into another relapse from stress and humidity. I do not want to relive my period of initial diagnosis, when Rett was only nine months old and the cumulative stress dried up my milk, which I lament to this day even though he is a rambunctious, giant, three-year-old boy. -1

I am going to try to get back into some sort of fitness routine, for myself, and for the kids.  I am flabby – Rett asked why I had “arm flaps” the other day. Ouch, toddler honesty. Plus, it will give me a way to get Abram’s excess energy out, and maybe fix his PA issues. +1

I am also very seriously trying to find  valid work-from-home opportunity that I can do with an infant, and possibly a young kid in homeschool (for a year, at least). So far, Beachbody looks the most promising, if for no other reason than I could have a job and get fit at the same time. But I have serious reservations (mostly fear – everything feels like insurance did for me, and that was a NO). 0

Total: 0

So far, I’m sitting on even. It’s my goal to be in the positive at the end of 2016, and this is my therapy. Here goes nothing.

My universe is coming together.

All the books I’ve been looking for, or subject matter I’ve looked into…

…all in my hands, now.

All the things I’ve said or dreamed in the past few years…

…I can see them coming true, finally.

All the things I’ve feared and dreamed would be my future after being diagnosed with RRMS…

…are falling away to hope and triumph.

I was told on confirmation of the ER CT scan after I “lost” my left side that i has relapsing-remitting multiple sclerosis, that I would be on injections for the rest of my life, and that I should expect to be in a wheelchair within a couple of years.

Fuck you, quack neurologist.

I have a healthy two-year-old son the size of an average five-year-old, who picks up random knowledge like nothing else. I have a supportive husband who works his ass off so I can stay at home with our boy take care of the house, and myself. I drive, I play, I walk without a cane. I cart around 55-lb bags of dog food with only a little more effort than  it used to be when I lived at the barn and cared for 40+ horses. I cook most meals for the family. I clean up after four adults, a toddler, and a 115-lb German Shepherd on a daily basis.

I am shifting from gluten-free to grain-free and paleo, in an adjustment to be on The Wahls Protocol, and get off of a pharmaceutical product. I am getting up at 0545 in the morning to exercise myself and the SDiT.

I have canes; occasionally, I need one. I’m not ashamed to say so. But that doesn’t mean that I’m a cripple, or that I can’t do C25K.  I just have to be a little more careful. But I can do anything I put my mind to – we all can, with or without cog fog. Don’t let MS, or anything else win. Own it.

The things I want for myself.

I want to feel good when I look in a mirror,  not just when I step on a scale and see a lower number.

I want to be able to remember things without always writing it down.

I want to say that I did something most people can’t or won’t, regardless of their chronic health.

I want to master my life, my self, and my disease. The only way I can stop is a permanent end, and I want to do something before that happens.

Having the best support.

It popped into my head earlier just how lucky I am to havr such a ridiculously supportive husband. When my relapse hit earlier this year,  he was there for just about whatever I needed – he even washed my hair for me – but he didn’t let me get away with silly shit.

When I had some parestheis (sp?) after taking a hot shower and lost the ability to pick up or carry our son, it terrified me so bad that I called him sobbing, in hopes he could settle me down.  He took off and came home for me in 20 minutes. He held me close and told me I was okay,  until I settled down enough to go to sleep.

He gives me my injections regularly, without flinching. I know many husbands who can’t.

He supports my transition to gluten-free with only a few eye-rolls, and I didn’t even get that when I told him I want to be strong enough to be on American Ninja Warrior in two years. He supports my every move – provided it’s not influenced too heavily by a brain that isn’t firing right – and encourages me to meet my goals.

I can only hope all people have the kind of marriage I do, with all its ups and downs. I wouldn’t be half as strong without him  by me every step of the way.

It’s the journey, not the destination.

I (potentially) got stupid a couple nights ago. That’s what TV will do.

I’ve decided I want to compete on American Ninja Warrior. At worst, I will be stronger, faster, and more confident In dealing with MS. At best, I will prove I am stronger than I ever thought.

In a month,  I’d like to participate in a 5K run-walk honoring fallen officer Buddy Christian. In a year, I’d like to be back in martial arts, specifically kami bushi kai, and working through the last half of my black belt journey. In two years, I want to be ready to compete, if not pregnant with our second child.

I want to do this not only for myself and my family,  but for every MS warrior that is or has been like me: afraid to start, afraid to stop, unsure whether to shit or go blind.bi want to be proof that MS is not a death sentence, just a life sentence that you can not only survive, but thrive under. MS will only slow you down – the only thing that will stop you is a lack of faith and perseverance. I can do anyrhing I put my mind to. Daddy used to tell me that all the time; I find that nothing but the obstacles have truly changed.

I have MS, but it does not have me.

Can’t fix stupid.

I follow a blogger who is a GF-for-MS afvocate. She has multiple children, and I really liked seeing her updates. I have been encouraged by reading her updates about being pregnant with MS, and raising older kids in the process. I was all on board with her, until today. Why today?

Because she advocated marijuana use as an alternative to tobacco.

Let me get this out of my system: STUPID.

Largely, marijuana is still an illegal substance in the U.S. There are areas that have allowances for medical marijuana,  but they are definitely in the minority. Recommending that your followers switch from tobacco to weed isn’t the best statement from anyone,  much less a mother of three with one on the way.

Anyone, by the way,  who tries to rebut this with the age-old “but marijuana doesn’t hurt anybody. ” Bullshit. Some users don’t experience any negative effects. A great many do, and often their experience ends in jailtime, if not injury AND jailtime. Illegal substance is against the law no matter what “proof” you have for MJ to be worth it.

If a jail stint is worth it in addition to a chronic disease that (for now) will never go away or be healed, then take off. Fly high.  I’ll stick with changing diet.

Cleaning house.

I was not brought up on a Cleaver kinda house. Dad was a selective cleaner (as in, twice a year – and no, I’m not kidding),  and Mom had too much stuff I wasn’t allowed to get into. Plus, all the moving I did (5 states between 1st and 8th grade, multiple houses, divorced parents) kind of made cleaning seem pretty useless in the sense of ‘why bother, we’ll be gone in a year.’ I regret that now, because I live in a house of four adults, a toddler, and a puppy two adults, two pre-teens, a toddler, and a puppy; and I am the one who cleans. The toddler… well, obvious; he and the puppy are about on par, apart from the house-breaking. The “pre-teens” clean nothing effectively,  but sure do manage to dick up a lot of stuff in little time. One adult works a high-stress job on night shift, and I’m home all day… so you see where this is going.

I have cleaned the house (the “company” part, anyway) six times in tbe past week and a half. Sometimes I wonder why I bother. Now I’m just sick of not knowing what I’m doing when I get up,  or where to find anything. Seriously – our part of the house (bedroom and nursery) hasn’t been touched in the better part of a month because it’s last in the list. Nobody sees it but us, and every time I get done with the rest of the house, I have to turn right back around and do it alk over!  Ridiculous.

Regardless if ridiculousness,  I’ve turned back to The FlyLady, complete with phone apps to make it easier to remember what I’m doing and what’s next. I’m not expecting miracles, but at least I can stay on top of this (sort of) and get a routine back in place the boy is already doing good at bedtime around 2030-2100 with one nap a day, so let’s see what other miracles I can shake out of the universe. If anyone’s got any tops for managing a SDiT in growing pains, a 1-year-old boy stuck on full blast, a night shift husband, two in-laws, and all the mess that comes with it; please let me in on your secret.