In the Blink of an Eye…

It looks like this didn’t publish when I tried to publish. Sorry. Let’s attempt it now, and I am working on another post…

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My beloved Grandmother died on May 7th. It was as unexpected as you can get for someone who is 96 years old (97 In August) and isn’t terribly ill. She was an amazing lady. She was my inspiration and role model in all things. She was so tough. She never let anything slow her down.

It was my utter frustration in not being able to attend her funeral, it being in Winnipeg, that led me to send a rather nasty (Canadian nasty) note to my doctor about me having to live in darkness while my life passes me by. Well, my doctor had me in her office and was sticking needles in my face within two days.

It seems she was sending me messages through the clinic, which I was not receiving, of course, and I was doing the same. Now that we are in touch, we can bypass the stupid place and get to business.

As for the MRI, my brain is fine, no leaking, no shifting, I seem to have good old fashioned chronic migraine. The doctor has a treatment plan, a bunch of it is old stuff from the last clinic, getting me off an old medication, Botox regularly. She feels I can probably feel good some of the time.

I was doing really well before, when my treatment was regular, so we shall see.

Sitting up is so amazing, I can’t even begin to tell you.

Why do people insist on wearing perfume to a headache clinic? Why?

Love

My Super Hyped Doctor Appointment!

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As is apparent, I survived my doctor appointment yesterday. I had some mixed feelings about it, and needed time to process, but on the whole, I think I’m much better today. Emotionally. Physically, too. Let’s start at the very beginning where my happy alarm goes off at 6:00 am, my husband brings me coffee, and I start to look dazed.

First thing I grab my medication. The second thing I do in the morning when I have time is vape. I wasn’t going to have time today, so I should have used my marijuana oil. Vaping takes an hour and a half, start to finish. My therapist keeps nagging me because she thinks that’s too long for medicine to be consumed, it should go faster. Nagging me- she mentioned it twice. It still bugs me. I can’t control this. I didn’t remember my other medication – the marijuana oil – until we were partway there, but perhaps it helped with my sensitivity? Showing them how sensitive I truly am? I don’t know, I probably just screwed myself.

We dropped my son off at school, and proceeded to the hospital where we hung out. The doctor was only a half hour late, but we were treated to a bevy of overly perfumed women (really, don’t wear perfume in a hospital, it doesn’t matter when last you bathed) dramatically emphasizing how they were in the most pain of anybody! So Loud! I felt sorry for each woman in their own way. Each needed something they weren’t getting. And then I looked around and felt sorry for all of us, as I realized everybody had something they weren’t getting. And then the doctor called us in.

New, young, gorgeous, doctor this time. She had read all three volumes of my file and asked for update on the situation. We told her about the head pain. The neck pain, nausea, dizziness, having to lie down. The stomach pain. Just on the surface of the stomach. Did I throw a cyst recently? My pubic bone. My hands hurt, my joints hurt, my knees hurt, Things are not going well.

We discussed the effect of the pain, how it feels, quite in-depth. She wanted to examine me. This was going to be the toughest part.

I changed into my formal hospital wear, and my husband held my hands as she did a surprisingly gentle upper abdominal and lower abdominal palpitation exam. I didn’t scream, only major flinching around my lower right quadrant. It was incredibly sore. She did back off right away. It didn’t hurt so much then, but ten minutes later was …wow!

On to the pelvic. She did some sensitivity testing around my ladybits, and a modified pelvic exam. I’m usually screaming during pelvic exams, but there was no speculum involved. She said I was something that amounts to ‘not letting the horse into the barn’ (my words) and I should probably get back to pelvic therapy. I was teasing my husband that she was trying to tell me I was frigid, but he didn’t know what that meant. I had to explain. Cute.

Naturally, by this time, I’m not feeling too fantastic. We start talking about the weird headaches I was having. My husband volunteers that it was like I have these vertebrae sticking out, and she goes to touch them..

Bad idea!

This send a searing shock of pain up through my neck, up to my head and I cry out in pain. I think I scared everyone,  including myself. The doctor runs out of the room, embarrassed, leaving me to get it together.  I’m scream-crying, trying to hold on until the initial shock of having the top of my head blown off subsides.

I finally calm, husband helps me get dressed, and we wait.

The doctor comes back, apologizing, but saying the demonstration really helped. Even though she’s sorry.

After some back and forth with the Old doctor, where he threatens to cut my medicine down, because I’m on an awful lot, and sometimes too much isn’t good either, which feels like the new ‘lose weight’. I’m not on THAT much medication, and I adjust accordingly. I wish he’d discuss it with me. My husband is dismissive of this comment, but I am not. I feel like it’s a warning, but I’m just a paranoid girl.

I feel like he’s saying “if you bother me too much, you’re getting less medication”. Which is insulting, because hello, not a drugseeker, and we haven’t even discussed the problem yet. Fer chrissakes. It especially rankles me because I’ve been sucking it up for most of my life, pretending I’m okay, pretending I can get by, pretending it doesn’t hurt as much as it does.

After that bombshell, I just kept a straight face, and he continued his best recommendation was to continue on with the Botox treatment as planned, because it does so well for such a large part of me, we will try for a referral to a person who may do nerve blocks or x-rays of my c-spine to deal with the headaches. In the meantime, he is prescribing a compounded cream for my headaches that he said he thinks might help. I can’t remember what’s in it, but one of the things is ketamine. He said I could probably use it other places, too. Last night I was thinking about my abdomen. The pain is about an inch deep, if that. This may be perfect. Here’s hoping! It would be nice to not have to take something that has to traverse my system to work. (I know this enters my bloodstream, but it doesn’t need to go to the edges of the skin to be where it needs to be? But the brain… yeah, right, it’s been a long week)

So, we are just waiting for the magical compound to show up. I don’t know how my hair is going to like it,  but thank God for Olaplex.

The more I think about his recommendations, the more I think he is right, and I think he made good suggestions and I see how they are beneficial and applicable. The cream may be just the thing on my abdomen, as the pain only goes about a half an inch down, I’m excited to try.

We had briefly spoken about referrals to specialists, but in light of the EDS clinic referral, which is underway, I don’t know what will come of that. Does it make more sense, if that is imminent, to see their in-house people?

My memory is improving ever so slightly.  I feel like I’m at least over whatever cold or flu thing I had. I feel so much better than I did!

I spent the rest of the afternoon just flaking out and surfing the Internet and trying to stay comfortable. This morning was pretty much back to normal.

Have a great day, Zebras! 😘

 

PS. Just FYI, the reason I don’t use my family’s names in my blog is simple. I thought it might be too confusing for someone coming in in the middle to figure out which one was the husband, the son, or the daughter. I thought this would be simpler. Also, it gives them some anonymity when we go viral. 😁 I may slip up occasionally.  It’s not a tragedy to me. We aren’t in hiding.

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! 😘

Disappointment

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I am so disappointed. I have been looking forward to this doctor’s appointment since we booked it. I was thinking that maybe we could finally address some of the pain I’ve been dealing with. If I could get rid of some of the sensitivity in my abdomen and hip, inner thigh, back area, I would go a long way toward being more mobile and living quite a different life, I think!

But the doctor wasn’t there.

To be fair, I think the issue may have had something to do with him being beholden to another agency. They didn’t tell us anything, but you know what it’s like after a number of years, you learn what to listen for. So, listening in, and knowing he was having trouble when he booked a room for our appointment, he likely didn’t have a listing of his patients (confirmed) when he arranged to see people. Our theory is he wasn’t being paid by the hospital,  but by another agency, which had say over his schedule, just based on what whispering we heard. His interest seemed to lie in a certain area of pain management, which is why he wanted to see these particular patients. He is keen, eager and excited to try to help. I love those kind of doctors. He was so kind at the appointment earlier. The plan is to catch up next appointment, which is April 4, or they will contact my husband if the doctor can meet earlier. I know I jinxed it when I said I didn’t want to go to the doctor this morning! 😁

My husband is at the eye doctor himself, his eyes seem to be clearing up. It’s Friday. I’m unwinding. Going out with a friend this weekend, although I don’t know what we’re doing. Probably lunch!

Found an old photo of me, probably at my heaviest weight.

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Me, with author Lindsay Kelk

I was probably just under 300 lbs here. It’s cropped weird, but I had to get all of me in there. I stopped at just over 300.

And me this morning.

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Waiting for the doctor…

204. I’d like to go to 170, but I’m not all anxious about it in case I get sick again. Sorry about my glamorous outfit, but hey, it’s the doctor! Also, why didn’t anyone tell me my boobs were so huge? Ugh! I need a better bra.

I will do a post about my weight gain/loss another time. Short, though. I used to be quite thin. Medication can do quite a number on your body.

I forgot to mention, I was so busy the other day, I started getting changed, but I only got my pants off! 😁 I wasn’t doing anything too earth shattering, just easily distracted.

Have a great day!

Impotent Rage

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I’m sure you can probably guess what I’m annoyed about. A certain POTUS is being a giant idiot, and I am having a tougher and tougher time dealing with it. Let me explain.

It’s fairly easy to put your head down when you have a chronic illness, and keep your focus on your needs, focus on your family, focus on your next milestone. There is not a thing wrong with that. I think that is a phase we all go through, and it’s a healthy thing to do from time to time.

When the election campaign started for the 2016 election in the US, I didn’t pay much attention. After all, I’m Canadian. I held a passing interest as the global citizen I had always been, but then I started to shift. The current POTUS started saying some pretty sexist things as he was campaigning. Then some pretty outrageous and sexist things. By the time he was on to Nasty Woman in October, I was firmly with Her, and there I have remained.

Fortunately, I received an invitation to Pantsuit Nation after the horror of November 9th, and met some amazing, passionate people who care. I’ve made some very good friends! I have learned so much.

I don’t talk about politics much here, because it’s not relevant: it’s not important. Not usually. Right now, though, I am feeling shell-shocked. I haven’t felt this way since right after 9-11. I feel like I’m wandering in a daze whispering why?

But that’s not productive. What is enraging me the most are the people who are ignorant of the facts, who are acting as if this measure wasn’t taken, no vetting would be done. What I must do is step away, inform myself with reputable news sites, and stay away from comment sections.

Where my heart breaks the most, is my friends in the US who have similar physical challenges. While I whoop it up in Canada with socialized medicine and medical marijuana, people can’t see their doctors.

Every time I think about it I start eating cookies. That’s not good either. Maybe I should nap.

Wait: I have a better idea! Movie time..Name it!

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My EDS Hands

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As you can maybe guess, I am kind of in a strange mood today. Positive, but strange. Twisted. Amused. I slept yesterday afternoon for a good chunk. Three hours. Until my son came running home, pounding on the door because he lost his wallet and keys. Daughter refused to open the door, as she thinks he should get his keys out and open it himself (unaware he has lost said keys). Brilliant husband figured out son’s route home, called local convenience store, and voila! Found wallet and keys.

 

My wrists are feeling better today, but I will spend some more time in

Side view of brace for right hand, my thumb goes in that pink loop.

those cast-like braces. They help so much, but there is just not much to do with them on. I really need to be evaluated by a specialist. I may need one of those fancy thumb stabilizers.

I have finger splints,  as I have swan neck deformity of the fingers. I will post a photo of that one day. It’s not too gruesome to google. I find, though, the finger splints don’t relieve that much pain. It’s equal to resting. The brace or splint does do quite a bit more.

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Top view of right hand brace.

It’s going to be a low-key weekend. I will rest, wash my hair, maybe do some makeup try-on for my blog http://www.squidgesbeautyhaul.wordpress.com, but that’s it! Fun only. I won’t be posting, I will be resting my wrist. Maybe trying out voice to text.

I’m certainly feeling better than I was last week. Still in bed, at least I’m not crying, too! Baby steps! 👣

So.Many.Needles.

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My Botox needles, ready to go, taken a couple of years ago.

One of the things I do to help manage my pain is get Botox injections every ten weeks. Just like for migraines, which I am also treated for with Botox, at the same time.

So this morning I had to drag my ass out of bed. I was not amused. 😁 I was really sore! I wanted to have a quick wash. In fact, I’d wanted a bath last night, but that just was not happening. I was too sore. I tried to move today, and my back spasmed, so I asked my son for a warm cloth to wash up with so at least I won’t be smelly, and I get the third degree! Why? Does it have to be warm? Why? Ugh! He’s 12, it’s not like he’s a baby.

After I convinced him of what I needed and managed to dress, I was able to hobble downstairs. Must have been so funny to see! Me hanging on to husband and kicking my feet out trying to loosen my knees up.

We got to the hospital and our appointment, and there is a nurse? Social services worker? I don’t know who she is, but ugh. She’s not kind. She calls you to your appointment, then disappears from sight. She doesn’t even sort of wait for you. Then she waves you to the treatment room. Hm. Onward.

The doctor comes in with two new doctors who are taking extensive extra training in Pain Management. We talk about how fascinating I am to have Ehlers-Danlos Syndrome, diagnosed late, even though he had been seeing me ten years. Hm. Hm. Botox injections are tricky things, only work occasionally, hm.

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The aftermath of needles in the forehead

Hm. Lucky me. And I am very lucky.

Then we start sticking needles in my head. As you can see from the photo, he didn’t clean me up before sending me home.

After the front, we move to the back, and he injects some near my jaw, I think,  but truly I just spaced out for a while.

I know we then did some near my neck and shoulder,  being careful around my throat so I don’t stop breathing. I hear that can be bad. We continued to my lower back focusing on the lower spine area, and the top of the buttocks.

At this point I have to roll over. Never an easy task in a gown on a narrow slab of table. Now imagine you want to preserve some dignity.

Here is also where my doctor starts to show off. He says to PMDIW (Pain Management Doctors in Waiting) “she has an entrapped nerve and is very sensitive!” As he touches my pelvis, the right lower quadrant, and I scream. The PMDIW look horrified and blanche under their South Asian complexions. They look like they want to bolt. I don’t blame them. Doctor moves on. He terrorizes my pubic bone. My face contorts in a silent scream. Husband grabs my hand. The doctor injects me as I sob. I tell him to keep going. Husband asks if I want a break, but I don’t. It will just be longer, then. The doctor starts on my right inner thigh. He pushes a bit. I wince. He moves over. I scream. I quickly slam my hand over my mouth, conscious of where I am,  but it hurts so damn much. I’m just sobbing now as he finishes the left leg, worn out from the pain, spacey, tired.

The doctors all leave. Husband helps me get dressed. That not a nurse or a social worker comes in and asks if I’m okay but is gone before I can answer. I can tell she didn’t care anyway. I’m known as the screamer. They tease me that I’m bad for business.

One of the PMDIW wants an appointment with me next week to talk about how sensitive I am in areas. It doesn’t seem normal not to be able to touch someone in an area, like my inner thigh or my abdomen. So maybe we can do something? I can hope!

So, I’m sitting here semi-bingeing on sweets, while my dear husband naps beside me. It’s bliss! 😍