Happy 2018!

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The new year is starting off pretty well. The EDS Clinic called yesterday and notified me of a cancellation. My appointment has now moved from April 5, to February 22! Yay!

My sister was here to visit for a couple of days. She is 20180104_080853.jpgteaching English in Beijing with her husband. I haven’t seen them in two years. Of course, I was just getting over that flu/flare-up I was dealing with, so we just sat in my bed and chatted, but it was freezing here in Toronto, and most of North America, so going out wasn’t high on the list.

My sister brought me so much cool stuff! I will show you some over the next little while. I didn’t think of this until now, and loading photos after text is nigh impossible if you are slower than Usain Bolt. ๐Ÿ˜

I am kind of glad the holidays are over. I love Christmas so very much. It is my favourite time of year. I love buying gifts and the family get togethers and being with everyone. I love the cold weather and being indoors and snuggly! This year was wonderful, however I ate all the bad foods and I am so uncomfortable. I am constipated and have horrible acid reflux. Oh, fodmap! I run back into your arms! My skin is all broken out – which rarely happens, so I know I need to get back to my regimen. To think, some toffee can cause such havoc!

I have an appointment at home with my cannabis doctor on the weekend. They are charging $75 per visit, which is only slightly more than taxi fare which is about $60 round trip. Driving is out of the question, as my husband would have to park blocks away, I don’t drive. I’m too wobbly to park and escort, and there is no place to leave me in the lobby… this works much better. I get so sick in the car as well. Then on Monday, I see my gynecologist and my sleep doctor. They are in buildings right next door to each other. ย I’m going to be tired!

Both my sister and my husband helped me clear out the clothes that don’t fit anymore. I have a few more to go, because I have kept everything as I have changed sizes, but not anymore. I will buy new if I change again. I have kept a few oversize things, but I feel like I have stabilized. I haven’t weighed myself all month until yesterday and I have only gained five pounds, but within my range – it’s probably waste material, anyway. I don’ t fuss as long as I am in my range – within 10 lbs.

I was supposed to see my sleep doctor if I lost or gained 20 lbs. I use a CPAP machine, when I went on it I was on a huge dose of narcotics, and since I have lost 120 lbs and decreased my dose of that medication by a lot, so this doctor will be surprised. I wonder if I still need the CPAP?

Wishing you all the best in 2018!

โค

Fail Day!

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My fails today haven’t been this acrobatic, but they’ve been fun! I subluxed my toe sometime yesterday, so that doesn’t feel really good. I’m being much more of a baby about it than I’d like to be.

My husband has been worried I’m only eating the same thing over and over, so he bought me some chilled shrimp. Now, he was going on and on about making his own sauce, because the commercial cocktail sauce isn’t FODMAP friendly. I happily dug in, not realizing I was eating commercial sauce, and nearly died from the burning of my mouth. Husband had taken the kid to school – it was a late start and I had been up since 4 am. However he seemed confused at my repeated requests for cheese. Perhaps he doesn’t know that cheese is the antidote to fire mouth.

Ah, he just wandered up here on a conference call looking for something that was never up here in the first place. Maybe he’s just stupid. ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ far from it! It would be nice to have company.

Sigh. So then, the cocktail sauce spilled all over my fuzzy zebra blanket, and I dropped the remote into it. I wasn’t thinking and I licked my hand where the sauce got on it. Which reignited my fire-tongue. Wah! Here’s me: cocktail sauce all over my hands, trying to stand up without spilling any more or reinjuring my toe, trying to scooch off the bed yelling “fuck” totally forgetting my husband may be on a conference call. Oops. His fault. Somehow. ๐Ÿ˜›

My head still hurts. My goal is to stay awake most of today. Yesterday I gave up at 2:00 and woke up at 4:00 This morning. I still need to lie down most of the time.

Goddamn I hold my body rigid. I need to stop this.

My days are pretty okay for the mornings, but noon is the time. Every second day I sleep for 18 hours, it seems. I try to change the pattern, but it doesn’t seem to work. I am still trying to find a doctor, but I fear I will not be able to wait. I may need to go to the ER.

I’ve been feeling a bit more social, but that’s all well and good until someone says something stupid. I know I’m sensitive right now and I’m overreacting to a minor throwaway comment, but I should think about it’s great that people see me as the same old me.

I did buy some cute pajama pants that arrived yesterday. They look snuggly. I’m excited. I’m so cold all the time. I can finally wear warm clothes. Layers. People. Layers.

I have been burning up Netflix. My picks:

  • American Vandal – a mockumentary about the most serious of subjects: Who drew the dicks?
  • Big Mouth – the first episode is uncomfortable, but it gets better. Dirty, dirty humour, but you will learn so much. Some of my favorite writers.
  • Evil Things – creepy things for Halloween, this is on TLC, actually, really trashy show about haunted objects.
  • The Exorcist (tv show) – I’ve watched two episodes of this, it is creepy as hell. I believe Season two is on television.

 

Oooh, great, and I’ve lost the remote so I can’t look up any more. Sigh. My day.

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The Appointment

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I haven’t posted in a bit because my head and neck pain has been really bad. I have been trying to cope as best I can with frequent resting and making sure I take my medication on time. The pain has still been so overwhelming, the only thing I could really do was sleep. So I was sleeping up to 18 hours per day. I had also developed this weird swelling of my mouth, but I think we’ve figured that out. I didn’t have it last night, so cleaning my mouth guard seemed to help.

I was really hanging on for my doctor appointment.

Husband and I arrived well in time for our 8 am time. We waited a few minutes and were called in. He asked what we were there for, and I began describing my symptoms. He stopped me and asked if we were dealing with this before with the previous doctor. No… He referred us to you, the neurologist. Oh, but he’s not a neurologist! He’s an anaestheseologist! This appointment is to ensure I have enough medication!

My husband spoke for a while after that while I tried to compose myself. All I know for certain is we have more of the magic cream that makes my neck feel awesome for ten seconds. It’s actually not bad.

There is no neurologist on staff, but they are hiring one. So he will refer me. It will just take a long time. I also demanded a referral to a gastroenterologist, which he tried to dance away from, but I insisted. Sorry if you have to do work, doc.

I saw my GYN on Tuesday, much better appointment. She feels my period was a one-off. No cysts or anomalies on the ultrasound. Did a full exam, while uncomfortable, we determined most of my pain was likely gastrointestinal, hence the gastroenterologist. I have a very sharp pain on my lower right quadrant that is horrific. She also gave me a prescription for visanne, should things get out of hand.

My husband was brilliant and rented a wheelchair for these excursions. It made things so much easier! I didn’t feel like I was dragging myself down the hall. We have a prescription to buy one. We should get on that.

I’m not entirely certain what to do now. I can’t live like this for 6 months until they sort things out. I will get in touch with the EDS clinic and see what they have at that hospital. ย My GP will refer, he just doesn’t know to whom.

The other option is ER with every flare. Not good options.

Oh, and I will be getting my migraine shots, at least. They are set up for October 24, with a doctor who is amazing, so that’s positive. He doesn’t do the rest of the body, though, and a shot in my pubic bone would go a long way to less pain. My back… I could probably do it myself after 12 years! Ha ha!

Ok, getting tired.

I’ve bought a bunch of cute things to cheer me up lately. I hope I have the spoons to show you soon! ๐Ÿ˜„

Hugs to all.

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Hellooo Nurse!

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Finally, after being in pain all week, one of my friends on here (I don’t know if she wants recognition or not) convinced me to convince husband it was time to get me checked out.

Now we haven’t done nothing, I know my husband put in an urgent call to my regular gynecologist on Monday morning. ย We still haven’t heard back. My GP is on holiday the last few weeks of August, with no cover. We would have called telehealth, but they always tell you to go to the hospital.

WARNING: I WILL GET GRAPHIC ABOUT LADYBITSย 

I don’t entirely blame my husband, although he sure blames himself. If I had said the pain was bad, we need to go, we would have gone. However, I have a cold as well, with that sore throat. All I want to do is sleep. So I really minimized the pain, as I hoped it would go away.

At first, because I had spotting, I didn’t worry. Then it got heavier, and heavier, with the pain, our theory was my Mirena IUD had started burrowing its way to freedom.

I arrived at the hospital. The one I go to for pain management, ย and the ER was fairly quiet. Score! I sat down with one of the nurses, ย Matthew, he was a sweetie, even though he couldn’t spell Ehlers Danlos. He thought ahead and put me somewhere where I didn’t have to get up and down. My husband asked right away if there was a place I could lie down and I was able to lie on a stretcher the waiting room. It made such a difference!

I was transferred to a room, like an ER bay, because you know the pelvic exam is coming…

The doctor came in and did a preliminary outward examination of me. When he got to my back, I screamed. I didn’t know that. Well, I guess that hurts.

Apparently, on my chart, it has huge notes all over saying DO NOT DO A PELVIC EXAM UNLESS ABSOLUTELY NECESSARY! This is because pelvic exams hurt me. Very badly. The doctor, realizing this and seeing the preliminary exam, orders 6 mg? Of morphine before we go any further. What a sane and sensible man!

Later, he comes back to do the pelvic exam, and can’t find anything too dramatic. Takes swabs.

Next is a pelvic ultrasound. I have done this a billion times. The technician is awesome. It hurts much less than it has in the past. In the past, I’m not on morphine.

We arrived around 10:30, it is now around 3:30, husband decides to grab some food because we have a lull. This is where everything happens.

The doctor comes in while husband is gone and informs me that the ultrasound shows my Mirena is in the right place, no problems there.

The doc comes back 3 minutes later to tell me there is no indication this is anything but an endometriosis flare up. However, because there was discharge and bleeding there is a small chance there is an infection. They have the culture, but it takes 48 hours to grow, they will call me and we will prescribe something then. Otherwise, many women still get their period with Mirena, (all of a sudden, after 13 years?) that’s what this may be, go home. Follow up with your doctor, you need more pain medicine.

So, fine, we were getting up to go and wending our way through the maze of stretchers and some bitch sitting on her boyfriends stretcher had seen us coming out of the room and stretched her foot out to kick me as I went past. Nice. Bitches in this city.

So, anyway, I’m frustrated. I feel like I’m back at the drawing board. I thought I had this sorted, and it’s reared its ugly head. I need to meet with my doctor, but she’s near impossible to get an appointment with. ย So, I’m going to need to consider another doctor. That’s first up.

I don’t think I want a hysterectomy. All advice to date has indicated I’m in pseudo-menopause now. Having my organs removed won’t make a difference to the pain, but will for other things. Will have to discuss with the doctor I end up with.

In terms of diet, I am on FODMAP, and can’t really change that. It’s been suggested I go vegetarian, or fish-based, but I’m allergic to fish, I’m allergic to legumes, which screws up vegetarianism. But I am also allergic to soy. So I’m very picky about my food. I only eat about two dozen items, and most are well vetted for proper growing technique.

Once again, spending the long weekend resting up. I suppose we tackle this new adventure on Tuesday.

I’m going to rest. So tired.

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Im Thinking of Hiring a Male Escort…

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…to come over and watch tv with me. You see, my family is impossible to watch television with. The husband can only watch things that require sporadic attention, like sports, or a comedian. I cajoled him into watching Stranger Things with me last weekend, and in the first freaking episode he had figured out major plot points! I didn’t let him know this, of course. He was great, I know this required extra effort on his part. We then watched Atypical, which is about an 18-year old with autism. That was painful. He is dealing with his own autism and it hit a bit close to home, I think. Anyway, it was wonderful of him to watch with me, but I can’t ask him to do this regularly. He has a stressful job, and to come home and stress over tv is too much.

My daughter watched some tv with me the other day. She likes her shows, though. Either horror movies or teen shows.

I’ve been trying to pull away from documentary and watch more comedy. I think it’s good.

Finally managed to reach my grandmother yesterday. She reminded me she’s turning 96 next week. She asked how old I was, and when I said 47 in November, she replied “Oh, you’re old, too!” ๐Ÿคฃ My husband is 49 next week. Yikes! We is ancient.

Chatting with grandma was lovely but tough. She has a benign tumour on her pancreas, and a polyp in her throat. She needs to have all her food blended. We compared pathetic diets, followed by a round of ‘I feel bad for you!’ ‘No, I feel bad for you!’ It’s horrible to be pitied by your grandmother! I assured her I have a wonderful full life, even if it’s not very exciting. I can’t help but shake the feeling she’s hanging on to make sure we grandkids are all settled.

My life is really lovely. I do have a nice spot carved out here. It’s a quiet life, I’m not making huge splashes at anything. But is that what I want? I have enough people in this world with grudges against me, for very silly things, for the most part. I will just sit here quietly and enjoy my life and quietly do what I can to avoid pain. Cultivate what friendships I can, and just be in the moment.

It sounds right.

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North American Eclipse 2017

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My family got together on Monday, August 21, 2017 to enjoy the partial eclipse. We are in Toronto, so we only saw a crescent shape, but it was a fantastic opportunity to get together. My husband studied astronomy and chemical engineering in school, so he is well prepared for this sort of event.

We had the kids make box viewers over the weekend, so 20170821_144218we would be prepared. Here is the first view from my son’s viewer a few minutes into the start of the eclipse. There isn’t much into the crescent here.

We decided it would be best to be in the backyard, because of the events in the states in Virginia, it might be unseemly for a bunch of white people to be standing on the lawn with boxes on their heads, even if it was Canada. I’m totally kidding. Or I was, until some knucklehead was fired from his job in a small city nearby for flying the confederate flag from his truck. Sometimes I don’t understand people. Why be a jerk just to be a jerk? It’s not like Canadians have ties to the confederate flag. ย Anyway…

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Here is my daughter’s viewer, close to totality for us. You can see we had about 2/3 of the sun covered. It wasn’t all that dark, sort of like a cloudy afternoon or approaching dusk, but the shadows were so neat! They were different from anything I’d ever seen! The shadows were ominous, like something very spooky was going to happen. But then the shadows reversed and the light returned to normal again.

What was most enjoyable was spending time with the kids. They played with my Snapchat filters for a while, and we laughed a lot.

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I was able to spend some time in the backyard in the sunshine. I haven’t been able to sit in the sun for years. But my family pulled out a lawn chair for me and we had a nice relaxing visit for fifteen minutes before we had to go back in.

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Surveying the property as my darling husband wrestles a humongous pumpkin! ๐Ÿ˜„

The family had worked hard at cleaning up the yard. There is a lovely grape arbour just outside of the photo. We don’t harvest the grapes, though. We don’t have the spoons to make wine or jam.

I’m worn out. I’ve been sleeping from 2 to 9 and then 1 to 6 am. I’m hoping something can be tweaked so I feel better and less exhausted. This is so boring.

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