7.5 Weeks on Keto

You probably think it’s weird I am doing another update already, or perhaps you’ve been wondering.

I am not going to lie, I have had a few treat days in the over seven weeks but since this is a lifestyle change and not a diet it is absolutely, 100 percent okay. I will never make it through the upcoming holidays if I do not allow myself a little treat sometimes, the trick is to only have it once and then back on track. I monitored my ketones after these days and it takes about three days for my body to get back to producing ketone levels that are detectable using the urine test strips.

I am up to over 18 inches lost and about 18 pounds lost. If you read my previous post though you know this is about my brain and not my weight, though I am happy to have this side effect of this change. So, have I noticed any changes in my brain/body in regards to my MS symptoms and my change in eating habits. Unfortunately, not yet, though these things take time so I am going to keep moving forward hoping the long run results will help the MS.

Now, for my blood!! I had to see the doctor so I had her pull blood that I get done annually just to see if there is a change. There was. My cholesterol level over all is the same, though the triglycerides were so high last time they couldn’t actually get a number for the LDL. My triglycerides have gone almost 100 points, my A1C level went from 6.3 to 5.7 (pre-diabetic to your little high keep up the diet changes).

The thing that was the biggest difference in my body was my hormone levels. Last year, and the year before all of my hormone levels were at “post-menopausal” levels thanks to my PCOS. Now, my levels have normalized to those of an average 30-something year old. That’s a huge difference, I am not planning on having any more kids but if I was this would be an awesome start.

Now that my hormones are returning there’s three possible outcomes for my alopecia.

  1. My hair grows back (this would be AMAZING), however less likely.
  2. Nothing changes
  3. I lose more hair, this is a possibility because the hormone levels being wacky is what caused it in the first place.

With the science showing me that there is a difference happening on the inside of my body and the outside of my body fitting into cute clothes I forgot I had I am confident moving forward the way I am.

 

When You’re Doing it Right and Someone Else is Stupid

As if a giant sign out of no where, when I was trying to find something lighthearted to blog about after my last one this thing happened.

The setup: my youngest son is in the second grade, there are only four handicap spots at his school. Since mid-way through first grade I have had him come to the car at the pickup loop so I don’t have to be there an hour early to get a spot. This means I rarely use a spot any more. I have posted numerous times on the parent Facebook group for the school about my service dog because I know the kids will tell the parents and the parents usually have questions, because I “look normal”.

Today, I had to park (an hour early) to go in an buy raffle tickets for a Halloween Bash they are doing at the school. I do not use a handicap placard because my disability will only get worse and there is no cure, therefore, my license plate sports the international symbol for disability, smack dab in the middle of the numbers. In addition to that, the back of my SUV has a sticker that says “Service Dog on Board”. I am the only parent at this particular school who uses a service dog on the property.

When I got back to my car, after most of the cars had left, there was a post it note on my driver side window; “Where is your Handicap Plackard??” Grammar and spelling aside, my brain might be shrinking but I am not that stupid yet, I was enraged. I immediately felt my blood pressure rise and had to take a beat.

I am the biggest fucking advocate for those of us with disabilities, I talk to the principals at both of my kids schools about needing more spaces for us. During events I ask about the possibility of blocking off some regular spots for more of us so we can all park. We are a weird little group, those of us who are disabled. I get seriously pissed off when people park in the disability spots without the appropriate tags, but I check the license plate first and placard second.

Is this person someone with a disability and just an ignorant asshat, or are they a normal person feeling the need to make them-self feel superior. Either way, they only succeeded at pissing me of, publicly shaming them on Facebook, and now here and now everyone knows they can’t spell and they don’t have all the information they need to actually make a difference.

Would this same person put this note on the car of one of the disabled veterans that park at this school? They don’t have the handy little wheelchair on a plate or a placard, they get the dignified DV on their plate. It commands respect and I would be livid if I witnessed this happen to them.

How dare you make me justify my disability in a public forum because you leave a cowardly note on my car. You have no clue what I go through everyday just to live, let alone participate with people socially or be there for my kids. I am bombarded with questions every single time I leave my house with my service dog. I expect it, I do not enjoy it, it adds stress and anxiety to my life but I answer the polite questions nicely, the not so polite ones get curt answers.

I have not had to justify my disability to anyone since I was in Europe last year at the Louvre when some lady (with a tour group) tried to tell me I could not use the elevator because it’s only for the disabled. “I AM disabled” I responded loud enough to get the point across.

So once again, I feel that my multiple sclerosis is not enough for the mass public. When my legs stop working and feel like jelly, when one leg doesn’t remember what to do and just kind of drags along. When I have pain in every nerve in my body because I over heated from outside temp or being surrounded by too many people.

You know what though, my MS is enough, my life is harder than any “normal” person can even comprehend. So to you, cowardly note leaver, fuck off. I did everything right and you are a bully.

Multiple Sclerosis Anniversary

Exactly 5 years ago today I got my official MS diagnosis. It feels like so much longer but since it can take over a decade for a MS diagnosis I guess that’s why.

MS sucks, it sucks super hard, for me anyway. Every person’s MS shows up with different symptoms and/or severity.

From 2016 through 2017 my brain volume measured the same. From 2017 to 2018 it decreased in volume compared to other women my age with MS by 11%. From 2018 to 2019 it decreased another 16%.

My “norm” went from the 91st percentile in brain volume compared to other woman with MS in my age group to 64th percentile in 3 years.

While the scans show no new lesions it cannot measure my symptoms or disability. My EDSS score has been 4.5 since a study I did for a neurophysical therapist in 2016. The only way it increases is if I go to a wheelchair.

I see posts about people being “warriors” and envy them. I wonder how they can stay so positive and hopeful. What’s the secret? Is their MS not as sucky as mine or am I just weak?

People have asked my opinion about Selma Blair and her bringing light to this disease. At first I was super pissed about it. Good for her, she has money and unlimited resources and probably doesn’t have to worry about working to survive.

The treatment she chose to under go is not something available to those of us with the same disease because insurance only covers it for most as a last resort or not at all.

Here’s what I do know, I can’t move to Europe where stem cells are approved form of treatment. I cannot afford to do it on my own, especially since I only got a 15 month break from some of my symptoms not even all.

I know my boys need a mom, I know that my experience may help one person to feel understood and less alone. I don’t know what the future holds or what it will look like.

I hold some semblance of hope that treatments will get better before it’s too late. Someone out there hold an idea on how to fix our brains, they just may not know it yet.