I Don’t Want to be a Pirate!

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…and I don’t want to walk a marathon, either.

So, I went to my appointment at the brand new EDS Clinic last week. I managed to survive. It took me a while to not only recover physically from the appointment, but to process the appointment itself.

Overall, the appointment was a success, I think. I went into the appointment with a fairly open mind, free from expectations, just hoping for some benefit.

Now, it seems the purpose of this clinic is to gather specialists who have an interest in seeing patients who have Ehlers-Danlos Syndrome. They currently have a gastroenterologist, a psychiatrist or psychologist I can’t remember which, and are working on the physiotherapist.

They reviewed my case, and then did a physical examination. First there was one doctor, then another came to see me and did her review. This took over two hours. Nothing special, except they detected arthritis in my left knee, which would explain why it hurts so much, and probably why the pain wakes me up at night. This is fairly new.

Now, really, aside from pills, the only treatment for EDS is physiotherapy. We all know this. So it was no surprise this was the hard sell I was given. They told me I was severely deconditioned. I cannot argue with that at all. But it was presented as: the doctor would say it normally. Then he would say it slowly, providing a long explanation. Then he would reiterate it quickly. He tested me for POTS, but kept me standing up, in pain, as the machine kept erroring. Then, he made a note for my doctor to monitor my blood pressure because it was borderline. I was so annoyed. This was toward the end of the appointment, I was in so much pain, the room was spinning, and nobody was nearby to catch me. Gee, blood pressure high? 🙄

One thing I consistently find frustrating is when doctors hear I spend my day in bed, they shut down right there, end of story. I am a complete invalid, sickie. They do not listen to why I choose a bed over the sofa. Firstly, all of my stuff is handy in my room. Secondly, I can stretch out and work out whatever kinks I get when I have space. Essentially, every morning, I fold up the blankets so I have room to work. There is a reason my nickname is Hamster Girl!

Another issue, he seemed not able to grasp the concept my pain clinic was not fully looking after my needs. As of this point, I have only had one Botox Migraine treatment since June 2017, and no Botox in my body at all since June. Although controversial, the body injections helped me a lot, and I am hurting! (Side note: the pain clinic has sent out a note saying they will no longer be doing injections. I also remembered, in my last convo with my pain doc, he said he wanted to switch my pain pills as he felt they weren’t working, I agreed.) Anyway, as we were about to leave, I blurted out we needed a referral to a pain clinic. Any Pain Clinic! He obliged. (Oh! I didn’t receive the note yet, but was told about it because the old pain clinic manager called me, as they had a cancellation with the old pain clinic’s new neurologist for next week. I mentioned this to the EDS Clinic doctor with some of the symptoms and he was very concerned about my head situation.)

Another weird thing was, he asked me if I exercise, and I said I do stretches, which he said do not count. He only counts timed exercise. Well, I hate timed exercise. I told him I used to be very active, walking everywhere, and that doesn’t count either. He suggested I go for a brisk walk. I nearly made another suggestion, but we had moved on.

I always love it when I am told things that hurt ‘shouldn’t’. Like my Symphasis Pubis. I began laughing. He told me it especially shouldn’t hurt because my daughter is nearly 16. Great. I will tell it. WTF?

All in all, it was a valuable appointment. I completely agree that I am deconditioned and physio with someone competent would be amazing. I had a really good guy for a bit, but I was in too much pain to continue, and three times a week – I was too weak to even do that. I think this is even more gentle, more home-based. I’m slightly nervous, because the time before the good one, the physio was all “join a gym! Join a gym!” Not good.

I didn’t like that they were trying to goal-set for me. One doctor wants me to start pool walking by the summer, and the other doctor was “I want to see you run a marathon in five years! Ok walk.” I have no desire to do either of those things. Oh, and the male doc kept saying “you’re still a young woman!” Uh, more than 3 and my bullshit detector goes off. 😆

They were both really pressuring me to start physio now! Now! Now! I do understand momentum is important. But I am not certain they are understanding how messy my pain management situation is. Yes, it’s fear, too! I barely sleep because of pain. I am just hanging on managing my pain. It’s very complicated. I spent this weekend mostly horizontal, trying to stay home from the emergency room. That’s how much that appointment took out of me.

I can completely see they are right. I need their help. But I am scared to add on more without more pain support.

I have scored a gastroenterologist, a therapist, a physiotherapist, and pain management. Not to mention neurology. Here’s hoping that appointment answers some questions.

Thank you to everyone for all your love and support.

 

The Daily Grind

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I was looking for baby photos of my daughter to post on Facebook to embarrass her, when I came across this one.  My daughter took this of me taking a Selfie,  because she thought my hands were hilarious. They do look pretty EDS-y. Is that a thing? You can see my index finger clearly showing swan neck deformity. This was taken October of 2015.

I found the makeup palette I was looking for. It was in the drawer beside my bed. I don’t often wear my glasses at home, so I sometimes don’t see things in front of my face. I swear I looked there, though! With my glasses and everything! I also promised my husband I would call and confirm his appointment with a sleep specialist. Promptly forgot. Sigh. He remembered and did it, though.

My son didn’t make it to school all week due to anxiety. I feel for him. Grade 7 is horrible. Aspergers is horrible on the downslope. On the upside, it can be beautiful. I kind of want to blog about this journey, but three is too many. Beauty will have to go. Not ready yet.

I’m scheduled to see my friend tonight and she sent me an email saying she’s ready, but she understands if I can’t make it. Which means she loves me, but she loves her bed, too. 😁 I completely get it! I asked if she would mind coming over and ordering in. She gets to see my family, always a treat. But it’s a quiet night. I hope it’s okay, because I don’t know if I can go out. I’m getting frightened of going out without my husband. Part because of ice, and part because of pain. My back is so sore, still. I can’t even really sit up very well. My abdomen, holy moly! I am having the worst cramps. Everything from under my breasts to my pelvis is just one knot of pain. I don’t even know how I’m typing right now. Distraction.

I wanted a bath last night, but my husband was working from home and just sent me to bed at 1:00. Once again, woke up at 6:30. But this time my stupid cable box wasn’t working. He wasn’t home yet, as he took our son to physio, but he worked on the TV thing when he got home. We need a technician now. It’s just my room, too. Boo.

Of course, because I slept so long yesterday I missed a dose of medications, and that can’t be good. I’m probably long past it now. I still want to curl up and sleep. I know if I take extra medication, it will knock me out anyway.

I’d better do something, or I’m going to eat all the cookies in the world…Likely check my social media then nap again.

Stay bendy, my zebras!

 

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! 😘