Weight… The Good Times and The Bad.

I’m the type of person who always tries to find the good, even in the most devastating situations. I’ve proven my mental strength time and time again, so it’s not something that I need to prove to anyone else.

That doesn’t mean that sometimes, I don’t still struggle with symptoms of my diseases that most other people, even with TCs, don’t have to deal with.

I have suffered with multiple health problems for most of my life, that may or may not be caused by my TCs, but are definitely made more difficult because of my neurological problems.

One of those major symptoms is weight. I eat healthy and very small portions. I don’t snack or eat large meals, etc. I used to be extremely athletic, and yet I still couldn’t lose weight like everyone else, after my 3rd child was born.

I could when I was younger though. My metabolism was normal. After my first two pregnancies I dropped the weight without any issues but after my third, things changed.

That’s because I have every card stacked against me when it comes to my body functioning properly. I had a thyroid lobe removed in 2000, when Abby was 9 months old. I was 29 years old, and it caused a 30 lb gain in 6 weeks. Nine months later, at 30, I had a complete hysterectomy. By the end of that year I was 234lbs. My highest weight that I would ever be, but losing it was an almost impossible task.

Unfortunately, there was another underlying issue that wouldn’t be figured out for years, because all of the doctors blamed those first 2 issues for everything else that came after.

I don’t blame them. Who would imagine a patient that could have even more going on at the same time? They’d never had one like me.

It wasn’t until about 5 years later that we would discover that I had another disease called Cyclical Cushings Disease. This is where the body produces too much cortisol, which in turn causes all kinds of symptoms, including more weight gain.

It’s usually caused by a tumor on your adrenal glands or your pituitary gland. I didn’t have either, and again, the doctors were confused. I did get an MRI of my brain though, and it showed something called an Empty Sella.

The Sella is the area of the brain that houses the pituitary gland, and when the Cerebrospinal Fluid is high, it fills the Sella to the point that it crushes the pituitary gland and makes the Sella appear empty.

At the time, I questioned the doctors about whether or not this could be the cause of my Cushings and they told me no. That didn’t make any sense to me, but they were the professionals, right?

It was only a few years ago that researchers proved that an Empty Sella CAN be the cause of Cushings, so once again I had figured something out before research caught up to me.

Cushings causes several physical characteristics that are very unattractive, such as “moon face” and “Buffalo hump” on the back, etc. It also causes muscles to become brittle, which is why mine would constantly pull and tear when I played tennis. Exhaustion is another factor, so it’s very uncomfortable and tiring to deal with.

All of these physical conditions worked against any attempts to control my weight by normal means. As a matter of fact, any dramatic increase in physical activity or reduced calories (diet and exercise ) would actually cause my body to become more stressed and cause it to gain more weight.

I remember starting with yet another trainer and telling him “I’m going to warn you right now that I will gain 15lbs by next month, and don’t feel guilty when that happens. It’s not your fault.” He said to me “If you do everything I say, I PROMISE YOU that you will lose weight!”

He was also my husband’s “coach” and Steve just looked at us and said “She’ll probably gain weight but it doesn’t hurt to try.” The next month I was up exactly 15lbs. It took months of me NOT exercising to drop that extra 15…

This was psychologically tormenting for me. Doctors would assume that I was eating Bon Bons in the closet. It wasn’t until my cardiologist tested my Calcium Score (which shows plaque in your arteries) and I got a ZERO on a scale to 100, that they finally believed that it wasn’t “an overactive FORK” causing my weight. As a matter of fact, she ran the test twice and then told me that she had marathon runners that don’t score ZERO! That was an emotional win for me!

Unfortunately, the people around me would judge me as well. As if, had I had enough will power, I could “be healthy”. They would recommend trainers and diets, without knowing my conditions. I believe that most intentions were to be helpful and encouraging, but in fact it was painful, because I know that they were thinking about my weight, and I was very sensitive to that.

It doesn’t help that we live in a community where appearance is everything. We could be “The Real Housewives of ___” where I live. Thankfully, my husband has always treated me as if I was the most beautiful woman in the world. It wasn’t him making me feel like a failure or unattractive, it was my own insecurities and frustrations.

Gradually, I lost a lot of the weight from my hysterectomy and thyroid but for the next 2 decades I would go up and down 20-40lbs, depending on how my body was behaving. Thankfully it never got above 200 lbs again but I’m still technically on the line that says “Obese”. Just the word…..

When I started my Protocol for my TCs, particularly PEA, it reduced my neural inflammation and most of my symptoms began to improve or disappear. Within a year, I lost 40lbs without changing anything in my diet, etc. My body had just decided to work again, at least better than before.

That weight stayed stable for about a year and then something changed. In the last 6 months, I’ve gained about 25 back. Ten in just the past month.

Emotionally, I’m in that place of sadness and frustration. I don’t know what changed or why. Having so many different potential causes makes it confusing, not only to me but to my doctors. I’m having bloodwork and tests to check for hormone levels, etc but so far everything is testing normal.

Now I’m getting GI tests to see if there might another additional cause. I’ll be having an endoscopy and colonoscopy. My GI doctor is very good and incredibly interested in my knowledge about my TCs and other neurological issues.

If everything tests out “normal” though, we may have to consider that it could be a new symptom with my thoracic TCs, or that my pituitary is malfunctioning again for some reason.

So, until my body decides to behave properly, I’m stuck being overweight again. It’s so difficult for me. In my mind, if I had eaten to get here, at least I would have had some pleasure in getting here, and had some ability to lose it, if I could chose to do so.

For me though, I get all of the judgement that overweight people endure, without having any personal control over my own outcome. If it could be accomplished by strength and willpower, then this wouldn’t be my particular battle.

I’m not saying anything to be hurtful to overweight people. I know that’s a whole other tormenting condition. It’s just not one that I can control, and I wish that I could. What I would say to other overweight people, who can do something about it, is to be thankful that you CAN do it, if you choose to.

I also want to tell others who don’t struggle with weight to not judge those who do. You don’t know their stories. They could have physical issues like I do, or they could have emotional traumas, etc. We each have our own issues to deal with.

Work on “The log in your own eye”. Judgement of others is quite a big log, and much more ugly than any physical condition. I work on it every day. Some days I even succeed.

I’ve always told my own children and family that it’s not about weight, it’s about health. I’m as healthy as anyone with my multiple conditions can possibly be. A doctor once told me, “Shay, a person with only ONE of your conditions could be 300 lbs by now! Considering you have every card stacked against you, you’re going great!”

I try to focus on that but I told everyone that I would share the good and the bad. That includes my own personal weaknesses and struggles. This is one of my biggest mental battles. Not only do I feel unattractive, but the extra weight makes my body hurt more, everywhere. It’s a difficult time and one where I have to make a conscious decision to CHOOSE JOY.

I’m praying for my body to behave again and that whatever is causing this will heal. I’m also praying for emotional acceptance of where I am right now. I didn’t do anything to lose weight and I didn’t do anything to gain it. It just “is what it is” and I need to accept this situation as it is right now.

One day I’ll be on the down cycle with this symptom and I’ll look back on this post and remind myself to be grateful!