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EDS, post 30 can your body bounce back?

I know your metabolism takes a slight hit at 30, larger hit at 35 and every 5 years or so keeps shrinking. I’m still heavier than I was pre-kids and reality is hitting me. I knew I no longer had my pre-baby body, but will I be able to go back?

I accepted the fact that pregnancy made my hips more of a problem area than they already were. I only wore a larger size (11-13 in high school) for that reason, but had an hourglass figure. When I dropped to a 14, I tried on some 17s and couldn’t get them past my hips. That was when I read that juniors and adult sizes are made different (1,3,5, etc are juniors. 2,4,6, etc are adult). Juniors are made narrow in the hips where adult jeans are made wider in the hips.

I do know that with Ehlers Danlos, collagen is affected and where it makes your skin stretchy, it seems it may be harder to just bounce back. My scars fade but they still look strange when they heal. I don’t know much else about EDS but I do have an appointment, not only with a genetic specialist, but a specialist who lives with EDS herself. But that’s in a little bit. Right now, I’ve been researching trying to find foods that can help, workouts good enough to help lose weight and tone up but also safe for Osteo and loose joints and anything else that could help me with shrinking back down.

In the past 2 years, I’m down from 220 to about 170. I’m down from a size 20 to a size 14-16. I still have 40lbs left and hoping to get down to a 6ish or 8, maybe and I have 5 years in my mind to do it. If I can get down to my goal, fix what I need to fix diet wise and perfect my ingredient reading I should be able to maintain despite my Hashimotos. I’m seeing that even thyroid isn’t as much of an excuse as people use it. I dropped 20lbs in 4 months on a good dose of thyroid medication and cutting 1 ingredient out. I’m almost 1 month back to the normal (gluten free) lifestyle and finally feeling back to how I was feeling. I just had my thyroid levels tested again and they were perfect.

Right now, I’m trying to buy less processed foods. I have quit drinking Mello Yello (but I did switch to Diet coke for the time being), I’m eating 1 grain meal a day (if that) and the rest are cooked or salad. I do need to cut condiments and I still am drinking my Starbucks double shots (1 a day), I also started to notice my sugar drops when I eat potatoes so I’m switching to sweet potatoes.

The problem is when you have multiple diagnosis’s with several recomendations for diets. Where I have obvious issues with gluten, gluten free is needed (unless I want to spend all day cramping and in the bathroom), I had the diabetic low glycemic diet recommended to me for the reactive hypoglycemia. Cutting everything that was recommended to me feels restrictive. It also makes my OCD mind feel like I’ll be depriving myself and feels like it’s a black/white situation instead of- eat this way and you’ll feel great, eat that way and feel like crap.

I’m working on disassociating food with pleasure or anything related to emotions and trying to associate it with fueling my body and nothing more. Mindfulness helps that. Taking time to savor what I eat and pay attention to it is what I’m working on. Salad tastes great, so does fruit. Sugar and snacks that are heavily processed taste like chemicals but are an addiction- I’ve read all about sugar addiction and cold turkey is the way to go with kicking it. I’ve been thinking about trying a 1 month sugar free diet to try to break it. Just not sure if I have the will power currently. I will start it at the beginning of a month this year, though. Just have to build up and do further research into it to go in armed instead of half assing it.

In my picture, I was 18. I was constantly working out but didn’t know half of what I know now. I was also healthy.

I wasn’t skinny, but I was a good 30lbs smaller than I am now.

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I spent 6 years searching for a diagnosis

For my 6 year old. As of today, I officially have one. It was given first back when she was a tiny baby in the NICU but I went into denial.

She went through hell for over a year. She was in NICU for 8 months, had 4 surgeries (2 heart caths to close 2 an ASD and PDA, feeding tube placement and laser eye for ROP)

She came home on oxygen, heart monitor and with a feeding tube. She was born with 5 holes in her heart, unable to breathe without help, under 2lbs and 13 inches long.

She didn’t walk until shortly after her third birthday, didn’t talk for years and now only says a few words at once (has a speech impediment but is able to copy what we say, can read, and understands everything we say)

She still can’t jump off the ground, can’t walk unassisted down steps and is finally slightly able to step off the curb. She still can’t write but is starting to be able to give it a great effort and is in therapies multiple times a week both at school and outside of school.

She looks normal, when you hear her talk, she sounds special.

She’s sweet, kind, loving but has tantrums that can rival anyone else. She’s tiny, we have trouble getting her eating enough to gain.

We finally have a diagnosis. We finally know what’s wrong.

We don’t know how severe the outcome will be, but we do have a name. It’s a name I’ve been studying trying frantically to convince myself is not right. It is. Blood tests have proven it. I am, in a way, in a shock but really- I knew it and we were getting all the symptoms treated (it’s not a treatable condition) but I wish it was something she would just outgrow.

 

The name is 1P36 Deletion Syndrome. She has a lesser severe form. She has no seizures, no issues with her brain, her lifespan is normal, she has none of the facial features, but she has it. She’ll likely always be tiny, skinny and we have to have her heart monitored despite all holes closing up but I wish I never had a reason to have heard of this condition. I am still unsure how to feel.