Egull1's Journal, 22 July 2018

I decided to do my weigh-in today instead of tomorrow. The day after cardio always yields a nice low. Today is strength training, so I often don't show as much or sometimes there's a .6-.8 lb gain due to water retention the next day. Folks - I am technically at the high end of my "goal range". Woohoo! That being said, I still want to release 5 lbs so that I can start into maintenance at the low end, which is 147 lbs. I want to try and maintain consistently around 149 for 6 months before losing the last 7 lbs, barring typical fluctuations. I know my water weight fluctuations perty dang good a this point! lol - One of the things I figured out real quick is if I collected enough data on my daily and weekly water weight fluctuations, I can keep a completely unrestricted approach to CICO, because I understand down to the .6th of pound what is a water gain and what is fat or the rest of everything else. I even know how much water I'll gain if I have more than 3 drinks in a night, which rarely happens these days :-) Knowing these fluctuations has also revealed to me what days I'm apt to see the next new low.

It genuinely pays to be come of student of your own body.

Lates pic below. Don't freak out about the collar bones. I was bending over a little to fit in the frame, but those collar bones are connected to some hard earned kick ass muscles.

Last MRI brain scan revealed no significant changes in my lesion count, and everything looks stellar. I am officially using the cane now, and no longer using the walker for mobility. This can change w/MS just depending on the day. I'm glad to know the walker is there if I need it, but damn it feels good to get around without it!

I had a few folks when I was initially diagnosed with multiple sclerosis a year ago trying to push very specific diets on me or wanting me check out folks that had supposedly "cured" the disease through diet. I can only speak for myself, but viewing food as a panacea or cure for anything is wayeeee to limiting a perspective to take when we're discussing a condition that impacts the whole Central Nervous System, demyelination, and what triggers a T-cell to throw friendly fire and start attacking it's own nerve cells in the brain and spinal chord. Trust me, if curing MS were as simple as following a specialized diet, all of us 2-3 million world wide who have the condition would have jumped on that band wagon years ago.

To be sure a healthy diet full of fruits, vegetables, and lean meats is important for us regarding vitamins and nutrients (specifically C, D, & B12), because our Immune system and T-cells or WBC's are often compromised if not eradicated by about 30% or more due to the immuno suppressants we take to slow the progression of the condition. Also the pharmaceutical that manufactures the drug I take tasks us to stay away from any fruit or vegetable that is not organic. In fact, Biogen tells us to avoid any organic fruit that is situated next to non-organic fruits or vegetables in the grocery store. I find this kind of disturbing as it always makes me wonder if they know something about the role that pesticides may play in MS that I don't. But, eating an apple a day or simply focusing on macros is not going to keep my neurologist or care team away, LOL.

With regards to all the research being thrown at this condition, which is comparable to the billions they throw to cancer, my focus on the latest research will be in regards to the role that ogliodendrocytes play in myelin regeneration and repair. They've already discovered our OG bands (as I like to call them) attempt to repair the lesion to the best of their ability, but often the repair is incomplete or feeble. They're trying to figure out natural ways to get the Ogliodendrocytes to finish the job so the neural connection can be restored and thus mobility improves.

Word to the wise - exercise is one of those natural processes they're looking at - every wonder why I'm so religious about my workouts? MS society recently sent me an opportunity to be a part of a research/experiment regarding the impact of exercise on folks with MS. Unfortunately, I had already been working out before I was diagnosed. And, one of the stipulations of the research project is that the participant not have done any formal exercise before their diagnosis. Still, they are discovering some amazing things regarding the impact of exercise on the brain and immune system.

I do have a blood test next week to ensure my WBC count is still hanging tough and that my liver function is good, but so far this gal is in stellar condition.

Have a blessed Sunday everyone!
152.8 lb Lost so far: 57.2 lb.    Still to go: 2.8 lb.    Diet followed reasonably well.
losing 0.7 lb a week

46 Supporters    Support   

Comments 
You are doing great! 😀❤ 
22 Jul 18 by member: keilin-4
You look amazing. You have done amazing. Super inspirational. 
22 Jul 18 by member: jengetfit123
Great news (for now) on the lesion count. Good to hear you positive about your current plans. Your body, your life. Much ❤  
22 Jul 18 by member: adefwebserver
You have done your homework—being an informed patient is so important. Information is king. 
22 Jul 18 by member: Kenna Morton
Thank you, Keilin - you're such an amazing supporter! @Jenfetfit123 - Thank you! This body and what shows up to do for me inspires me everyday! @adefwebserver - I'll take as much love as I can get! @Kenna Morton - There's a lot of information out there and yet I know we haven't even scratched the surface, but it helps that I'm fascinated by my own "disease" lol. I also have a grad degree with an emphasis in brain theory, so I make a good study ;-) 
22 Jul 18 by member: Egull1
Your progress is fantastic.. You are so well informed about your condition/research/your body.. I have a long term condition too and find your enquiring mind, knowledge, progress and kick ass attitude really inspiring!! Go girl 🤗💪🏻💪🏻 
22 Jul 18 by member: gaelicgal
I'm wishing better days for you....my mother in law has ms and has lesions along with the infamous leg drag..... She uses a leg brace and is stubborn. She refuses any assistance as she feels persons will think differently of her. So my heart goes out to you and I'd like you to know how much your cared about. My family does many MS Walks in support of those which have this illness/disease. Glad to hear the medical checkup has showed up well......continue to take the best care possible. By the way, I like the beautiful shirt your wearing.....Much love and prayers for you !  
22 Jul 18 by member: wright2018
Egull1– I’m a learning freak. I’m a nurse so used to doing research. I get interested in a subject and next thing I know I’m back in school again. I attend a program at my local state university— all classes for seniors. No tests, just learning for the fun of it. 
22 Jul 18 by member: Kenna Morton
Stem cells may be in the future. I know clinical trials are in place. Do you have primary/secondary progressive or remitting recurring, or some other form that I’m not as familiar with. How is the treatment working for you? Really glad to hear about the latest MRI. A relief I’m sure. 
22 Jul 18 by member: Kenna Morton
@Kenna - I have relapsing/remitting MS. But they caught it just in time. The pathology of the disease points to progression if it's not stalled in its tracks. The 8-10 small lesions or foci on the brain stem were the give away. This had been happening for a while unbeknownst to me. The nickel sized lesion on T2 is what caused the damage impacting my legs and it screamed loud enough to let us know the lesions might have become worse if we didn't act fast. However, the overall impact of all of these on my brain is actually considered pretty mild, considering the lesion load. Ya gotta love the resiliency! I have seen they're also working on stem cell research, but it's still expensive and a bit controversial. I'm still open to it. There are so many fronts to focus on when it comes to MS - the immune system, neural and brain elasticity and development, genetics. MS has it ALL - which is why I think there is so much money thrown at it. Even if we never find a cure, we're discovering things about our "hardware" that are phenomenal. I'm so jealous of your classes at the state university. I think you and I are kindred spirits! @wright2018-->thank you so very much. It means a great deal to know that hearts like yours are out there advocating for us, bless you and much love to you! @gaelicgal - don't stop inquiring. I've learned the body is not our enemy whether it's sick or healthy. It is a phenomenal instrument that works very hard to give you what you want every single moment of every day. It's not perfect or infallible, but it lives and breathes for you in any way it can-much love and blessings to you!  
22 Jul 18 by member: Egull1
You got this— I’m in SoCal. We are seeing a lot of stem cell related therapies actual in practice. Poor insurance coverage but it will follow along. We will eventually be rebuilding bodies with spare parts that we make ourselves. One of the classes I take is on the future of humankind. Scary. 
22 Jul 18 by member: Kenna Morton
Bless you...I hope you kick MS’s butt and sure sounds like you’re giving it a run for its money ~ you go...YOU ROCK! 
22 Jul 18 by member: Em GI
Hard earned kick ass muscle! 
22 Jul 18 by member: HCB
So good to have an update! Glad to hear that you got this under control with your great attitude! 
26 Jul 18 by member: Horseshu1

     
 

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