My weight and Ehlers-Danlos Syndrome

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I started life at a fairly normal weight. 7lbs. 6 oz. I believe. If we are going to talk about my weight, we may as well start at the beginning. My childhood was fairly normal. Normal weight. I loved broccoli, maybe that was strange. I was tiny. My mom says she used to put me in one of the grocery bags and put the groceries in the stroller to go home, I was so little. But she had to keep me away from the broccoli, or I would eat it all.

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Baby Squidge

Approaching 10, I started to develop. Both breasts and a small eating disorder. I started to eat a lot of yogurt, as it soothed my stomach. I started my period at 12.5. From my first, it was excruciating. My second period (they were regular from the second one) had me in bed for three days. This became the new normal for my period. It was at this point I stopped eating. I used to eat an apple, a chocolate bar a yogurt and 5 soda crackers over three or four days. Usually I would skip the chocolate bar. I was hiding dinner with after school jobs and at friends’ houses. I was about 5’7″ and 106 lbs when I graduated high school at 17. Looking back, I wonder if my food aversion, because I wasn’t doing it to get skinny, necessarily, but because I felt better when I didn’t eat, was an EDS thing. I am certainly having stomach issues now.

I started modelling locally around this time. Nothing major, started to generate some interest, got really insecure, met my first husband, started to eat normal, gained a bit of weight age 18 to 19, weight 140, insecurity meant eating disorder blows up and I quite modelling to save my sanity. I had also grown another inch and a half or so with some decent nutrition, and was standing at 5’8 1/2″. At 19, I was diagnosed with Endometriosis.

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Daria Says!

So, throughout my twenties, I was very poor. We struggled.  It was the recession of the nineties. I went through college. Worked two jobs, picked up another when I graduated. When I didn’t work I slept. We lived in Edmonton, Winnipeg, and moved to Toronto in May of 1995. At this point I was 160 lbs. Quite healthy. I had taken up some side modelling again, but nothing serious, not with an agency or anything. I was definitely plus, and plus was not what it is today. I was also old. I was 24 now! Very Old. Great hair, though.

In 1998, my now ex-husband and I broke up, but he was kind enough to introduce me to my new husband. Before my now husband  (here on in referred to as “husband”) and I got serious I warned him that if he could get through my period we could get through anything. Little did I know…

In 2000, June, I had become quite the gym bunny. I was enjoying regular workouts, and had been for about three months. I was living with my husband, just fiancé then, for nearly a year, when I gained 30 lbs. In one month and continued to gain at the rate of two pounds per week all summer. I went from around 180 to 240. I was horrified. I hadn’t changed eating habits, my gym routine was all cardio. I saw doctor after doctor. Finally, I was put on thyroid medication and metformin. I couldn’t tolerate the metformin, but at least I stopped gaining weight.  The doctor wanted me to stop eating so much, and thought the nausea from the metformin would help. I was hardly eating anyway, so still, nobody believed me.

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I Love American Dad!

June 8, 2001 at 240 lbs, I conceived our daughter. I was so very sick during this pregnancy, I lost 30 lbs. in the first trimester. I gained back 10, she was born, February of 2002, I weighed 220 lbs.

My weight was fairly stable between 230 to 240 the ensuing years. My next pregnancy, our son was born in June of 2004, I lost weight again, only 20 lbs this time. To 2008, my high school reunion, through to 2010, my weight stayed between 240 and 250 lbs.

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Me at the Manitoba Museum in 2008,      240 lbs.

In 2010, January, I had severe gallbladder problems. I was in so much pain. I couldn’t leave my bed. I couldn’t have emergency surgery, because they wanted this particular surgeon to operate. She was busy with cancer patients. Stupid cancer. I had to wait until June. They stopped counting at 27 stones. However, me sitting home and eating three meals a day had put my weight up to 262 lbs. I was very unhappy.

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My Sister’s Wedding 09/09/09 245 lbs.

My weight remained stable now, as my mobility began decreasing here. I had still not been diagnosed with Ehlers-Danlos Syndrome, and we thought I had fibromyalgia and endometriosis.

From 2010 to 2013 I was okay with moderate activity, then things got bad. My mobility went way downhill. I became essentially bedridden. 2013 and 2014 were tough. I was in so much pain all I could do was sleep. We were adjusting my medication, I started with marijuana, but one supplier I was with kept running out, it was too strong, it wasn’t calibrated, my weight kept climbing. I wasn’t happy and it showed. Here is where I really started to climb towards 300 lbs.

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With Author Lindsay Kelk, 2015, 300 lbs.

In 2014 things started to turn around. In January, I was diagnosed with Ehlers-Danlos syndrome. I got on track with a good weed producer, which helps a lot. It really helps my pain. I got my dosage sorted out, my medication. I was still fairly bedridden, but could make the occasional trip out. 

2015 is when my weight finally hit the 305 mark. I was at the top. This is also when I turned things around. Early in the year, I was chatting with my sister, and out of curiosity, I downloaded MyFitnessPal. I wanted to see how much I was eating each day. I was shocked to find I was taking in about 900 kcals most days, with one or two days spiking to 2100 kcals every two or three weeks. I was suffering terrible heartburn, I was on the strongest dose of Prevacid allowed and had been since the birth of my daughter.

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Bridget Jones

By early summer 2015, I had started to increase my food intake to between 1300 and 1500 kcals on a consistent basis. My weight began to drop off slowly, about two lbs. per week. By October I was down to 260, and dropping. At Christmas I was 250.

At the start of 2016, I was holding steady at about 250 lbs. I was having trouble swallowing, so I was sent to an ENT, and did a barium swallow. The tests came back negative. My weight stayed steady around this time. I had completely plateaued.  Things stayed this way until about April, when I got really sick. I had massive gastrointestinal upset for three weeks and lost thirty pounds. End of April I was 220 lbs.

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Not the Best Strategy Devil Wears Prada

The rest of 2016 was difficult. I was not able to eat normally. My intake was about 800 kcals per day because I was so nauseated and had so much stomach pain I could not take in more food. I continued to log, I continued to record, and I continued to lose. I was still mostly bedridden. In August 2016, I had a stomach biopsy that determined a hernia, and my stomach had an unusual consistency. In October, under advice of my doctor, I started the FODMAP eating plan, which helps bloating and decreases inflammation.  My acid reflux is less, and my body is not as sore. I have tried to add foods back with little success.

December of 2016 I had a terrible stomach flu ending right before Christmas. I weighed myself and came in at 208 lbs. I got sick again right after Christmas, and into the new year. Remarkably, the second week of 2017, I felt amazing, and I started eating again. My diet was toast. I was up to 1200 kcals every day. This felt like a lot to me, and by the end of January,  I was pretty sure I had gained weight. I was hoping for ten or fifteen pounds, but when I was on the scale, I had lost another four lbs, and I was down to 204 lbs.

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February 3, 2017 at 204 lbs.

My next goal is to get under 200. I would eventually like to see 170 lbs again, but I’m not desperate, just in case I get sick like I did last April again.

It can be very difficult to lose weight, and especially to keep it off, especially when not mobile. I always have doctors telling me to lose weight or go for a walk, or physiotherapists telling me to go to the gym. It’s just not that simple. Honestly, I don’t feel one bit different, one whit better now that I am lighter. There’s not ‘less pressure on my knees’ or any other joint, or if there is, it isn’t helping me any. I like getting clothes easier. Well, pants, because my boobs still need the gargantuan clothes. Sigh.

Stay flexible! 😘

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