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Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
06-11-2016, 12:57 PM
Post: #1
Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
    This is the day I graduated from college with my Bachelors Degree in Business Administration

I'm going to start with the fact I have hEDS, otherwise known as Ehlers-Danlos Syndrome hyper-mobile. I have faulty collagen and some of you may know that our bodies are made up of 80% collagen, with this disorder much of that collagen is bad. Picture a rubber band, when it's new it stretches out nice and then bounces right back where it started. Now picture that rubber band a few months or even years later-it's dry, cracked and no longer bounces back, it even breaks when it's stretched. That is how my ligaments and tendons are. My muscles have to take the place of my tendons and ligaments in holding my joints together.

   

My fingers bend in weird directions, my knees bend backwards, my shoulders come out of their sockets when I roll over in bed or put a thumb tack in the wall, my wrist dislocates up to 20 times a day, my right knee dislocates while walking, and I've even had my hip dislocate. Sometimes this is very painful, but I've learned to block out most of the pain, because pain meds do nothing to help me and I cannot take NSAIDs because of stage 3b renal failure.

   

I have braces for my right ankle, both knees, and both wrists. I don't have to wear them every day, but I do wear them much more often than I want to. Even with the bracing on I can dislocate a joint. I was born with this syndrome, but didn't get a diagnosis until I was 43 years old, that was two years ago.

   

My disordered eating began when I was in the fifth grade (1982). I started getting motion sick on the school bus every morning. We; my sister, two brothers, and I; were the first ones on in the morning and the last ones off in the afternoon. The bus ride was an hour long each way. When I started vomiting on my way to school in the mornings, I gave up eating breakfast.

In 1983, my sixth grade teacher started bullying me about my weight, so I quit eating lunch too. I tried to take up jogging, but every single time I tried to jog, I'd sprain the ankle that I broke in second grade. It didn't take me long to give up the idea of jogging.

By the time I was a senior, I weighed 225 pounds. I figured what the heck, if I'm going to weigh this much from not eating, I might as well eat lunch. So I started eating a single serving bag of Lay's Sour Cream and Onion potato chips and drinking a cherry flavored Hi-C for lunch. By the end of the year, I added a brownie.

After High school I got a job in a chicken processing plant. My job was to scale bags of frozen chicken wings. They were three, five, and ten pound bags. So I was spending eight to ten hours a day, five to six days a week throwing these bags around. Some days I even loaded the forty pound boxes onto the pallet. I went from 225 pounds down to 185 pounds in less than a year! I was eating three times a day. But then came the day that they took that line out and I was put on the deboneing table. I stood in one spot and pulled the skin of a chicken breast then cut the bones out. We were required to have 60 pounds and hour of finished product. I developed tendonitis after only a couple of months at this position. They then moved me to the sizing table where I sized each boneless skinless breast to certain sizes. Before long I was no eating again and gaining weight to boot.

After I got laid off from this job, I started trying to see how long I could go without eating. My personal best was three days.

I had gone to several different doctors trying to find one that could tell me why I wasn't losing weight and why I was in constant pain. Every single one of them said the same thing "you're eating too much and there is no reason for you to be in pain."

I found MFP in 2012, I started logging what I was eating... I was averaging 500 - 800 calories a day and weighed 305 pounds. The doctors were still telling me that I must be eating too much. I even had one doctor tell me to get out of her office and never come back. In 2015 my kidneys started shutting down. I was at stage 3b renal failure when my doctor finally sent me to a nutritionist. The first thing the nutritionist did was tell me I needed to never, under any circumstances, eat less than 1200 calories a day.

Withing a week of upping my calories to 1200 I had lost ten pounds. By the end of the first month I was down 20 pounds! Then I stalled, so after several months I raised my calories again. I lost another five pounds!

It will be a year in August that I increased my calories to 1200; I am finally up to 2000 calories a day and still fighting to get to my TDEE, even though I increased my calories to 2000 I am still at 280 pounds! I have so much more energy now, I just don't know what to do with it all.

I'll add more later, but this is enough for you to see some of what I have done to get where I am today.
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06-11-2016, 10:29 PM
Post: #2
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
Wow, you have been through so much and have come so far! Your stamina and endurance are impressive - can't wait to hear more about your story!

Anitra Soto
Team EM2WL
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ISSA Certified Specialist in Senior Fitness

My EM2WL Journey: http://eatmore2weighless.com/never-too-old-anitra/
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06-11-2016, 11:00 PM
Post: #3
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
Scaryann, I am so happy to see you on this board, I'm glad you took up my suggestion! Wow, you are a fighter for sure! You amaze me with every piece of your story! You should be proud of yourself for coming so far and never giving up

Tereza Toledobig grin lovestruck
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Here is my journey: http://eatmore2weighless.com/tereza/
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06-12-2016, 10:24 AM
Post: #4
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
We went geocaching yesterday, it was national "get outdoors day"! Geocaching is one of those hobbies that has a tendency to become an obsession. We didn't find the cache, but I did find this little guy.     I don't think this little guy appreciated my asking him if he was hiding the container. drooling

While we may not have found that cache, we did find two other ones. They were all not far from parking, so I didn't have far to go to look for them. One thing I did notice was that even with only having the walking crutches for a month or so, I've already worn the tips out on them. Boy buying tips is going to get expensive at this rate. laughing

I didn't eat as well as I should have yesterday, but I ate more than I would have a year ago. So that's a plus.

Have you ever woken up and and just felt thinner? My stomach just felt tighter somehow. I did just that yesterday. I did take long enough to throw the tape measure around my waist and if I measured correctly I've dropped another half inch from my massive waist! I wish now that I had measured my waist last year when I started to eat more. I did take a photo though, so here it is...     and this is last month...    

Here is another photo of what I can do with my bendy fingers.
   

I also wanted to say thank you for the replies, as someone that didn't like to communicate with other people for the majority of my life, this has been a huge learning curve for me.
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06-13-2016, 01:37 AM
Post: #5
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
Well, we are so glad to have you over here and really look forward to hearing how you progress on your journey. Your body certainly seems to be responding well so far!

Anitra Soto
Team EM2WL
ISSA Certified Fitness Trainer
ISSA Certified Specialist in Senior Fitness

My EM2WL Journey: http://eatmore2weighless.com/never-too-old-anitra/
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06-13-2016, 06:27 PM
Post: #6
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
Cute little fella hiding in his shell. I guess all of us like to hide in the security if our shells, right? I'm so glad you are reaching out. I have heard of conditions like yours before but didn't know much until I started reading your posts. Wow, nicely done on wadpad!

Tereza
Team EM2WL

Tereza Toledobig grin lovestruck
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Certified EM2WL Personal Trainer and Coach
Here is my journey: http://eatmore2weighless.com/tereza/
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06-14-2016, 08:01 PM
Post: #7
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
Thank you so much for taking the time to read my about my life on Watpad! Thank you for the vote as well.

It wasn't long ago that I would dread washing dishes. I'd let them pile up until we had no clean ones to eat off. I just didn't have the energy or the desire to wash them. Then shortly after increasing what I'm eating, I'm washing dishes once, twice, even three times a day! I have the energy to make meals that I used to just take something out of the freezer (premade pizzas, chicken patties, chicken nuggets, and any other kind of "junk" foods we could buy that could be just put in the oven) put it in the oven and then eat it reluctantly.

In fact the first time I had my knee bend backwards too far (I later learned that I had dislocated it) I was making Pillsbury Cinnamon rolls.

Now I am enjoying cooking, most of the time. I still get frustrated because I just don't know what to fix. R (my other half) doesn't care for chicken. Chicken is my most favorite food... I have found ways to make my own chicken nuggets that he will eat, as long as I don't make them too often.

I measured the wear on my belt this morning...the wear section is six inches long. That tells me that I have dropped six inches off my waist since I bought the belt. I'm so excited!

Now imagine pushing the buttons on anything with these fingers.
[attachment=203][attachment=204]
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06-14-2016, 11:06 PM
Post: #8
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
It is so exciting to see how the body responds when it starts to get the fuel is so desperately needs. To be eating so much more and dropping those inches is so exciting!

Anitra Soto
Team EM2WL
ISSA Certified Fitness Trainer
ISSA Certified Specialist in Senior Fitness

My EM2WL Journey: http://eatmore2weighless.com/never-too-old-anitra/
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06-15-2016, 12:56 AM (This post was last modified: 06-15-2016 12:57 AM by hannah77.)
Post: #9
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
Scaryann,

Just saw your post on my journal and couldn't decide whether to respond over there or over here.

I just wanted to say how amazingly amazing you are. It would be SOOO easy for you to use your condition as an excuse to just give up on life, but there you are geocaching and finding ways to be active with your walking crutches and lifting weights and taking time and effort to type out a post encouraging someone else.

I look forward to hearing more about your successes!
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06-15-2016, 08:27 AM
Post: #10
RE: Scaryann1's battle with eating and EDS (Ehlers-Danlos Syndrome)
Welcome Scaryann! I look forward to "meeting" you! (Geocaching sounds awesome!)
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