Three Weeks Later…

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The past three weeks has been filled with trying to get my kids to pass and finish their respective grades, having them prepare for summer school, dealing with the first week of that, ushering in the purchase of new beds, and trying to facilitate the angst though the purchase of all new appliances.

My husband does not like change. He will put off purchasing anything until he absolutely must. The beds, for example.  Our fridge door is being held on with scotch tape. Dishwasher is broken. This must happen. I have no involvement with the kitchen, so it doesn’t bother me. He has things chosen, it now is having things picked up and hooked up, which is a huge chore. He can’t take all this time off and look after me.

The new beds, however,  are fantastic. My neck hurts less. Actually, I hurt more, but it’s not the bed’s fault!

Once again, with a whole new crop of doctors, we have to play around again. When I first started at the pain clinic 11 years ago, they put me on an opioid. That was standard practice. I am still on a bit of that opioid, and I’ve been trying to get off it for three or four years now. My pain doctor would say next appointment. Then that appointment would be in six months because that was first available, there would be 10 pressing matters to discuss,  then it would be… next time.

In the meantime I go on marijuana oil and a marijuana derived pain supplement. Fine. Everything is good. I’m okay as long as I don’t move too much.

My migraine doctor sends me back to my pain doctor saying take me off the opioid. At the same time, the marijuana pain pill is going out of stock. These two make up 62% of my pain relief. My marijuana oil only lasts for 5 hours at a time.

Now, my husband manages my medication.  He takes it and puts it in the weekly boxes for me, so I don’t know how much I stepped down, but before long I was in agony.

Now, those without Ehlers-Danlos Syndrome, and even those with, because everyone is different, right? The way mine works is that if my spine goes out-of-place, all of my muscles immediately tense up so nothing else gets ‘damaged’ until we get help. My stupid, well-meaning body. With my pelvis doing whatever nonsense it’s up to, my whole pelvis muscles tensed up, including my back. We have been trying to medicate them down ever since. Yesterday, we or actually, he gave me a booster: which is a smaller dose of medication set aside for emergencies allowed by the doctor. After that, I was able to sleep from around noon, to my regular time this morning. Previously I had been sleeping in two to four-hour chunks. I feel its much easier to cope. Like I’m able to.

I’m so frustrated with these doctors, though. What were they expecting? I was just supposed to stop everything? That I am actually not in pain and am doing this for fun? Honestly, the way people have been treating me. I might just break.  I don’t want to be on opioids. I don’t want my kids to hear me screaming in pain, either.

My migraine shots are coming up. I’m hoping that will help the face pain. I was talking with the other doctor about the pubic bone pain and he asked if my migraine doctor would be willing to shoot me with botox in the pubic bone.  So that’s a fun conversation I get to have. Although, last time I did compliment her on how smooth her legs were and asked if she waxed or shaved. ☺ I think I was completely giddy with pain relief.

Why do people think they already know what I think? Nobody ever asks what I want.

Someday someone is going to treat me like a person. Scratch that. My Migraine doctor is great. The office staff looks after me very well. It’s mostly the doctors who don’t know what they are doing and people who are rude in general. But those people still don’t see me as a human being.

The way things are as of now, I am completely off the marijuana based pain pill, as it’s out of stock at the moment and I have no choice. I cut down a bit on the opioid, but I need to stay where I am because I am hurting at an 8 or 9. I  am waiting to see the doctor who is supposed to be seeing me for this. I had an appointment last week, but was too sick. Imagine. Still taking the marijuana oil. It’s helping me through. I do have other medications, but those are the main ones for pain.

The physiotherapist is ready for me. My last two physical therapy experiences were:

1. Lose the cane and join a gym. For this, $125

2. A guy who couldn’t figure out why my legs were so unresponsive. Duh, I was full of Botox. I can’t be smarter than these people. I can’t.

Looking forward to this. 🙄

I will let you know if anything changes. First I want to walk without blacking out. Then physio.

🦓

If it’s Good Enough For Drake…

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I had to hobble to my Cannabis doctor yesterday. My husband came with me, naturally, because I don’t get around so well, but this was a nightmare.

At this point, I can walk maybe 50 feet comfortably, without struggling. My knees pop out like nobody’s business, and I’m having a hell of a time right now. I’m not certain what to do. We’re debating buying the damn wheelchair, as it’s not like I’m going to suddenly be able to walk long distances. However, should I be investing in a walker, as I’m hoping the EDS clinic can come up with some sort of bracing or physio to help strengthen things.

We caught a cab to my doctor, which is at one of the busiest intersections in the city, and if you know anything about Toronto,  that old joke about the city having two seasons: winter and construction is not far off. The cab couldn’t drop us off in front of the building, because the front was walled off for construction! We had to drive two blocks to get to the end of the wall. Guess who had to walk two blocks to her doctor? Yes! Me!

Of course, my knee subluxed, and I was hitch-sobbing in the elevator, limping into the office, crying most of the way through the appointment. The doctor didn’t seem to mind. He has a reputation for being a real jerk, but by the comments, it seems maybe he doesn’t like fakers. The appointment went well, considering, and I even learned I have been vaping wrong for the past 5 years.

My original doc gave me a prescription and told me to ask my friends for help. It’s so absurd, he kept treating me like a drug-seeker, but I so was not. Of all people! I’ve learned so much from my last two appointments with new doctors!

After the appointment, we usually walk out to the taxi stand, but that was gone, so I found a place to sit, while this guy followed my husband around telling him the lead singer of the Verve died, and since he looks like him, he can have a new job! Ugh. My head is killing me, my knee is killing me, I feel like I’m going to hurl… please let me go home.

So husband is trying to find a cab, but the curb lanes are blocked and no one will pull in, so he walks the half block to the line and promises to pay the fine if the guy gets caught. It works, and the cab has a.c.!

I have to get used to the idea of a wheelchair.

I haven’t even considered if I can handle something motorized or not.

Stumbling Around in the Light

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Good God I’m tired. I woke up this morning feeling well. I had energy. I made plans! I finished my vaping and decided to call my Mom as I hadn’t called her in ages. Halfway through the call, I lost all my energy. It just disappeared. I was so disappointed.  I had planned to do some fun makeup things, prep for Instagram and my Beauty Blog. It was not meant to be. I ended up trying to cry, but I was too tired to produce tears.

I had another three hour nap this afternoon. I put on some golf to listen to, and was out.

So I’m currently sitting amongst makeup detritus, waiting for my husband to come to bed so we can snuggle and I can go to sleep again.

I picked up a phone message yesterday and it seems my gastroenterologist from hell retired at the end of March. Everyone knew this but me, apparently, I guess I was trying too hard to stay upright I didn’t see the signs posted in the office, and husband didn’t mention it. I’m annoyed and relieved. It explains why he gave no fucks. Likely why he wasn’t interested in a long term patient. Let’s start over, shall we? Sounds like fun.

I have so much to do, so much to say, stuff to do, and zero energy. Ugh.

Is there such a thing as like medicinal energy drinks? Medicinal meth? In my day it was cocaine I guess. I was thinking, what speeds you up? Speed?  Lol. I’m soo into drug culture, can you tell? I had a friend who used to show up with pot in high school. Perfect with the pain of my menstrual cramps, we now know I have endometriosis, but that’s all the unprescribed drugs I took. I can feel crappy all on my own.

One Facebook friend? had a status today that read 90% of illness is emotionally related. 😂😂😂

I read one of those anecdote collection of medical stories, and it told of this one student who was sitting behind another student who pulled out a bottle of Tylenol and counted out 8 pills and went to swallow them before he stopped her and asked what she was doing. She said her pain was at an 8, so she was taking 8 tablets. That’s why doctors ask you to rate your pain out of 10, right? 😮 Scary.

Okay. I’m worn out. My hands are feeling good from all the rest, they’re just cold! 🙂

Have a lovely evening, my Zebras! 😘

 

Just Call Me Oscar

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I am so grouchy today. I have been for the past few days,  actually. If I look at the calendar, it seems to happen around the same few days every month. Isn’t that interesting? This blog is so helpful. 😄😄😄 I’m on Mirena, so I don’t have other cues to go by. I’m also freezing cold, can’t get warm, very tired and uncomfortable. Is that due to my illnesses? Is that due to the extreme cold weather alert? Coincidence? I might as well track it.

I’m trying to be my usual cheerful, yet practical self, but I’m feeling jealous and moody. I don’t feel like talking to people, and I don’t even want to play makeup. I just want to sleep so I can get warm. There are supposed to be two back to back blizzards here Monday and Tuesday, and I have a doctor appointment both days. I’m especially dreading this, because we’ve decided to take cabs, and being nauseated in the back of a cab is hellacious. The parking would cost as much and my husband would have to leave me to get the car, or I would have to walk…cabs are easier, just scary.

I was looking forward to a change of scenery, but I didn’t want it to be nerve-wracking, but I’m probably blowing it up in my mind because I don’t have too many other major things going on at the moment. Except a dull headache. They also call snowstorms blizzards in this city. I’m from the prairies where blizzards trap you in your house for days. I need to remind myself of these things.

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I also can’t change these appointments, as one is piggybacking on to my husband’s appointment, and the other is just squeaking by my medicinal marijuana renewal.

Next week is spring break, so no fighting with the boy about going to school, so maybe my acne will clear up! What was fun about being a teenager again? I have money now, and it’s no fun!

Hopefully tomorrow this will have passed. I don’t like myself like this. I want to leave me in a corner and go be with fun people. I will likely put on some TV and organize my extensive makeup and skincare collection. (It’s my thing, I can’t even wear nice clothes, it’s all pajamas) I’ll just be quiet. Calm. Wait for it to pass. Enjoy that there isn’t crippling pain attached and gear up for the next two days. My cannabis doctor is a new one, so that will be an expenditure of spoons.

Have a wonderful day, my Zebra brothers and sisters, and everything you identify as! 😙

Rare Disease Day

wp-1488290747322.pngFor Rare Disease Day, I have asked many people to take the time to learn about my experience with my illness. I have written this post as if it were a one-time visit. Please indulge me.

Today is Rare Disease Day. On the last day of February every year, we celebrate the rare diseases. Why? Because February contains the rarest day of all, February 29th.

We ask people to wear their jeans in support of people in support of rare disease, because it’s in their genes.

I was diagnosed two years ago with Ehlers-Danlos Hypermobility Type 3 Syndrome. Ehlers-Danlos Syndrome is a genetic condition which means your connective tissue is faulty. Hypermobility is a common feature of Ehlers-Danlos Syndrome, determined by the Beighton scale in patients aged 16 to 35. To learn more about Ehlers-Danlos Syndrome, please visit Ehlers-Danlos.com.

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This is me, Dana, pronounced DAH-nuh.  This is what I look like on an ordinary day.

My Personal History

I was not diagnosed with Ehlers-Danlos syndrome until I was 44 years old. My childhood progressed normally, with a few peculiarities. My mom reports I used to eat every third day or so. This was mirrored in my teens, as I had severe disordered eating, but mostly because my stomach hurt.

My knees used to ache during ballet class in middle school. I was told it was growing pains. I used to walk everywhere. I was a free-range kid. And adult. As a person in my 20s, I worked three jobs, and loved it. But things started to wear on me. As I turned 25, I got one good-paying job. I worked eight hours, I would come home and sleep. Then I would need to sleep on Saturday. Then I would be sleeping most of the weekend. What was wrong with me?

I met my second husband in 1998, and we started talking about a family. We had an ectopic pregnancy in 2000, and a daughter in 2002. In 2003, the pain in my hip and pelvis from symphysis pubis was too much to bear, after three months, I couldn’t return, and was on short-term disability. Then long-term. In 2003, I fell pregnant with our son, and in 2004 our family was complete.

Not Much Has Changed

The only things that have changed since those days is how much more independent my kids have gotten and how much my pain has increased.

Pain

I am in pain every minute of every day. It’s not something I talk about much, because it’s boring, and I have been working with the best doctors in the world on treatments. Someone always has something negative to say or a better idea. The only input I entertain is from fellow pain sufferers who approach with respect. This sounds harsh, but you need to hear some of the stories I can tell!

My knees are without meniscus or cushioning, my hips are so sore they can’t be touched without me screaming in pain. I’m not exaggerating, either. My stomach muscles along the right lower quadrant have been spasming for two weeks. They go into a deep twinge where I can’t move or breathe. I’d scream if I could. It’s like being cut in half with a chainsaw. I get chronic migraines, they are pretty well controlled with Botox injections, but I still get them. My elbows are sore, I have killer carpal tunnel, trying to see a doctor about that. These things mostly keep me around the house and in bed.

Two of the worst ones, are the pubic bone pain, and the Proctalgia Fugax. The pubic bone pain is from the birth of my kids, the ones I’m so lucky to have at all, because my pubic bone separated and never went back together. So it feels like I’ve been kicked all the time. Walking is so incredibly painful. Proctalgia Fugax is a pain in my ass. Literally. This is so embarrassing, but it’s the worst thing ever. It’s when my anal sphincter cramps up. I get no warning, and I am in blinding pain, where I can’t see, think, or breathe. The first time it happened,  I was sleeping, I thought my first husband was violating me. Why he would, I don’t know, that’s just what it felt like.

My stomach pain and constipation and diarrhea are the most inconvenient. My stomach always hurts. I am currently on the FODMAP eating plan, which is gluten and Lactose free, garlic and onion free, and I still have wicked acid reflux. I eat about 800 kcals a day because that’s what my stomach will allow. I’m constantly nauseated. I’m always trying to force food down. There are maybe five things I’m eating right now. My constipation used to be so bad I used to get shots to make me go, shots that would counteract the opioids I am on. It was a horrible nightmare. Now I can go about once a week, but it’s always urgent diarrhea when I do! Fun times! This eating plan has helped with the bloating and gas pains, but I still have actual sharp stomach pain, and my last stomach biopsy last summer said my stomach had an ‘unusual texture’.

Money

Money is always a fun subject because people get pissed off. My husband and I have been damned lucky in our lives and I won’t deny that for a minute. I had a pretty good job when I got sick, so I have disability insurance and he is a genius, so he makes a good living, plus good benefits. We live in Canada, so that is a perk right there. We managed to buy single, detached house right on the edge of downtown Toronto right as the housing boom started. It’s tiny, sad and ready for destruction by the next person who buys it, but…

Some of our expenses include:

  • Medical, prescription marijuana
  • Botox injection fees
  • Therapy and counselling fees
  • Prescriptions not covered by our plans

In Canada, if your medical expenses exceed 4% of your income, I believe, you can write them off on your expenses. Likely we will get some of this money back. Considering we have two children with Aspergers, this medical expense amount can be high.

Medication

I do take pain medication, but I don’t like taking more than I absolutely need to, or I get fuzzy headed. This is why I negotiate with my doctors to keep the dose as low as possible. On the other hand, what is the point, though, if you can’t do anything because you are in too much pain? I’ve been struggling with this lately, as my back pain has been flaring as well as my lower abdomen. If I take the breakthrough medication I’m prescribed, I’m drowsy. If I don’t,  I’m in agony. If I take sleeping pills, I sleep for two days, if I don’t,  I’m awake for two. Lower the dose? I’m at the lowest that works, unfortunately.

Friends

I can’t tell you the number of friends that have come and gone. It’s too painful. I’m like a girl in a rom-com repeating ‘don’t get attached’ every time someone is nice to me. It starts out fun, usually. Especially if I am mobile for a while! I’m having a good couple of weeks! But then it drops off. Always. I do have some friends who have stuck it through. They always have chronic illnesses themselves. The able bodies who do stick around for a while do imbue you with some kind of deficit, however. Whether it be intellectual, social, or your judgement, they will second guess you at something and educate you at every turn. It’s fun.

Family

My family is mostly accepting. My husband is a gem from heaven. I had him running off his feet last night, as he was performing myriad little tasks for me and I finally asked him to stop when it came to cutting my toenails, which I find difficult, since my back hurts. I told him it wasn’t fair for him to do this for me. He responded that he wanted to. I told him that it made me look like a demanding wife. He told me to forget about appearances and be my own woman! 😂 I love him. Even though his parents actively tried to have him leave me when we found out I had chronic pain. Just after the kids were born. They decided I was faking and just didn’t want to wash dishes or cook or do laundry.

Loss

I feel a lot of loss in my life. There is the life I wanted. I had wanted to be a photographer when I grew up. I never had the stamina to study. I wanted more than two children, but my husband was raising them, essentially alone. He couldn’t raise more than two. I wanted to be a gym bunny! I can hardly walk, not even a block, never mind a treadmill. I wanted a big career, a degree, an education. I know at this time, that is futile. This was supposed to be a starter home. I know the over $30,000 in medical bills we average per year has stood in the way of that. Our kids love this house, though, so that’s probably not that big a deal. At any rate, I did not want to spend my life in bed.

The Plus Side

On the plus side, I have met some many wonderful people because of this disease. It’s given me a chance to slow down. I was able to see my kids grow up. My children always know where I am. Teachers know where to reach me. My husband has had the opportunity to be an outstanding father. My kids have learned how to be compassionate caregivers. I did manage to also lose 100 lbs over the past two years, through incredible stomach pain and vomiting. There were days I would lie curled up in a ball and sip water because my stomach would hurt so much. The gastroenterologist hoped the FODMAP eating plan would help, and it has, slightly. I still have the sharp pains, but they aren’t constant anymore.

I hope this has given you some insight into what my life is like. Feel free to ask any questions you may have.

Stay stripey, my zebras and friends! 😘

Edited to add: I kind of thought this went without saying, but we haven’t had sex in ten months, and that isn’t going to change until a doctor finds a way for me to be touched without screaming. I bet you’re jealous now! I miss snuggling. Hugs. Holding hands lasts for five minutes before my hands get too sore. See how easy it is to forget about intimacy? 

Dark Days

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I have never felt so dark as I have the past few days. The pain just feels never-ending. I don’t feel like there are any bright spots anymore. The tears keep falling. I know this is a temporary state, but damn, it’s no fun to go through.

I try so hard to be stoic all the time. I try to pretend I have this. It’s no problem for me to lie in bed all day every day and play on the computer. But it’s a huge problem. People don’t realize, I think, that when everyone on Facebook decides to have a shitty day, I don’t get to go outside and find other people to talk to. I’m stuck with what I’ve got.

I’m trying not to turn this into an ‘everybody is being mean to me’ because that is certainly not the case. I know I’m very sensitive right now, probably not safe for human consumption, and feeling very left behind, and I have no way of communicating this without feeling like I’m whining, because I’m in too much pain to do anything but whine.

I feel like my soul is being slowly ripped from my body. I just want this to end.

I was thinking yesterday, I would love to just have a day off. To just hand over my pain for a day. But whom would I burden with that? Oh, you know my first choice. Someone who needs to make decisions on health care reform. But is there someone else who needs to know what this is like? I couldn’t even do this to my ex-husband. I don’t particularly hate him, but sometimes, you know, I think he was kind of clueless.

My good friend is chronically ill. She’s lovely. She always says this thing, though, that interests me. When she’s talking about her pain she says, “but it’s nothing as bad as yours.”. She’s not the only one who does this. It’s so interesting to me because to me, pain is so individual. It may be that I’m a big wimp 😀. It’s almost not how much pain hurts, but how much it disables you.

My husband just interrupted me for a conversation. He is home today because he had a sleep study done last night. When he originally booked it, he thought it was the Family Day long weekend. I’m vaping as I blog, so I’m feeling better as I go. I’ve spilled my guts to him, and we’ve decided to cancel my dentist appointment for this afternoon. They are so darn good to me. They allow me to cancel and fit me in when they can. The weather is terrible. Snow and ice. I can’t get over the snow banks on a good day, but the ice? We have to try again. I really need a new bite guard.

So, my husband thinks I should medicate myself as much as I am allowed. Then take a warm bath. He will ensure I’m okay, and I don’t stop breathing. I mean, I’m not taking the same things as Michelle McNamara, but Patton Oswalt pulls at the heartstrings, ya know?

Our neighbour’s young daughter knocked on the door this morning to say ‘hi’. She informed my husband her father was at work and her mummy was at work. My husband told her he was at work (liar!) because sometimes they let him work from home, and our children were at school because it was Monday. Her eyes got big and expression was surprised. “Monday!” She repeated. He heard her grandmother start to frantically start to call for her two doors down, “Grandma, I’m visiting my friends!” She called back as she scrambled down the stairs.

Husband came up and began to tell me the story. We heard frantic banging against the door, as if someone were throwing their whole body against it. “Goodbye!” She called as he opened the door, “Grandma’s taking me to school!” As she flew down the steps and down the walk.

He also reminded me that it’s February and Valentine’s day is coming up. This may explain the rash of sudden expressions of love (or whatever) and some of the grouchiness. I can totally get that! Whether it’s being just sick of winter in general, or hating Valentine’s day, whether in or out of a relationship, February is a tough month.

Sometimes it is straight out hostility. It’s so funny, too, what people perceive about your life. I know I’ve lost at least one close friendship over jealousy of my relationship. It is incredibly sad, because I just figured it out recently. If this woman could only see my life now! I guess it seems great on paper, doting husband, two kids (who happen to be awesome), good drugs, lie around all day, play with makeup… but where does the horrible isolation fit in? The feeling everything you say is completely stupid and pitied? The aching in every part of your body every day, including your pubic bone? Doctors constantly questioning your mental state…are you depressed? You seem depressed. Of course I’m depressed you fucking nitwit! But this is temporary. This dark mood. They come and go.

Stay in the light, my mutant collagen cousins! 😘

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! 😘