Stunned.

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Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!

💜

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!” 🤣 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.

💜

I am a Staaaaaaar!

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I adore Bob’s Burgers.  So much that Archer is weird now.

I have been neglectful of my blogging responsibilities. I am sorry. I have been spending all weekend rearranging my living space with the assistance of my family. We are not quite done, because they move like turtles. Well, they did until we straightened some things out. I like to give orders 1 through 10 and have them completed. Now go away and leave me until I need you again or work on task X. We were working as I was giving an instruction and waiting for it. Ugh. No. We sorted through a ton of my makeup and skincare. I feel well organized, because if I can argue my way into a couple more steps, I will be quite independent.

I was going to do my blog about beauty today, but I decided to nap. I think it was a great idea, because I was out. From 3 until 6. But here I am at 1 am, exhausted and unable to sleep. I don’t understand. How does this keep happening? I try to stay up, I fall asleep out of exhaustion, just a bit, and I’m still awake! I see another sleep study in my future!

I finished my medicine from the infection I had on Saturday. I felt great! Unfortunately, my tongue is starting to tingle and swell and go numb again. My lips a bit, too. My husband is off tomorrow for his eye appointment.  I dont want him to drag me to the doctor. Besides. I don’t want to go. I’ve NEVER had anything weird like this before! I don’t want to be around any more sick people (acutely). (Contagious)

For those who spend much time in bed, how do you configure your kingdom? I wonder if some of my back pain is in my setup, and would love some ideas of what to change!

One of the things I was going to do was pick up a book instead of a tablet at this hour. I sensed my husband was semi awake. He is autistic, what they used to call Aspergers, though not formally diagnosed*. I asked if he had a book light. He asked if I was going to read. I replied exasperated “No, I’m going to perform a colonoscopy!” He shot back he’d get the better flashlight. Thing with him, though, and all autistic people are different, although some are similar, you don’t know if it was sleep mutter, deadpan humour, or strict logic.

*Our daughter was diagnosed in 7th or 8th grade and the staff all commented on how exactly alike they are. Eerily alike. They look alike, they think alike, yeah.

So that’s been what I’ve been up to. Someone else is walking around the house. Probably my daughter, the other Insomniac. She’s so tired during the day, too.  We should make a boys club and a girls club. The girls can sleep all day, the boys can bring us food when they have time, and they can go to work during the day and sleep at night. Our daughter and I will stay up and watch Netflix. 😂. Our son has daycamp. We should cross paths morning and evening. Oh, goodness, can you imagine? Shift Workers do it, and it must be great for those who are dedicated or wired that way. I’m not really sleeping at all, just four to five hours altogether. It’s not helping me fight whatever body is fighting. I spend hours just lying here resting. I used to be a 9 hour a night person. My whole life.

I hope you have a great sleep!

PS   Sorry I sound kind of grouchy. 🤐 I dont want to be around me either! 😄

 

Oh, Great! *Eyeroll*

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Fantastic development. Along with the neck pain, back pain and dizziness, in there with the nausea and headache, forgetfulness and general discomfort. Alongside the inability to sleep properly and horrible concentration, it seems I’ve caught the cold the kids were passing back and forth.

Fortunately, it’s not too bad, and the CPAP machine I use tends to cut down on the amount of mucous in my nose, so I have fewer breathing issues. I just have a vague sore throat and have this mantle of exhaustion that is unusual. I’m used to being tired, but I’m achy and uncomfortable, I can’t settle. I think that tipped me off that something was off. Also, my nose is booger heaven – ugh.

Lack of quality sleep is not helping my concentration or cognition. I will be watching a show, it will cut to commercial, and I will completely forget what I was watching. I’m having trouble communicating verbally, still, most of all, and paper is only marginally better. (I could be writing my name over and over thinking I’m being brilliant right now!). There is one Simpsons commercial that comes on, and I get so excited, thinking I’m watching the Simpsons. I feel like such an idiot when the commercial ends.

My Mom seems to think my family has terrible luck and absolutely everything happens to us. I admit, it does sound shocking to listen to someone with chronic pain describe flare-ups. I had been silent for years, but I think people ought to know what my life is like. Not in a complaining way, but in a this-is-how-people-live way. People have chronic pain. This is my life. My kids have had quite a few illnesses this year, yet this is my first cold, I think, since being ill at Christmas, with the rest of the world, and it’s mild. My husband has glaucoma issues, cataracts, and arthritis. Both run in his family. My kids have Autism. Sounds like a lot of families I know. Maybe these families aren’t so open, I don’t know.

I should get that nap.

Stay stripey my Zebras! 😘

Disability Stories – My Mother-in-Law

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Let me preface this by saying I know my Mother-in-law isn’t truly evil. She just doesn’t think things through before expressing herself some  all the time. My husband had a fairly revelatory discussion with her the other day (Sunday, actually, beginning at 8:30) where we discovered she often thinks she’s being funny! Imagine!

My Mother-in-law is older than I think of most moms, in that she’s in her mid eighties. Her husband is nine years younger, and quite a hunk! Portends well for my husband’s aging process! Not only is my Father-in-law handsome, he is sweet as spun sugar. 💙

Now my Mother-in-law, I do believe, generally has the best of intentions, generally. I first met her after the breakup of our mutual relationships and when now-husband and I had just finished the ‘should we or shouldn’t we?’ dance. I think everyone knew this relationship was significant.  She served dinner on warmed plates, so fancy. She was trying so hard. It was sweet. It was my first trip to the Danforth. On Logan Avenue. Gorgeous neighbourhood. I’ve lived in Toronto twenty-five years, I’ve been on the east side maybe fifty times. Anyway, they were lovely. She ran around before I arrived removing photos of his ex-girlfriend. It had only been three or four months. They had been living together. They bought a house. (Oh, that really makes me sound like a home wrecker, but on reflection I do believe we were set up. It took me years to realize).

Things went well. July of 1999 husband and I moved into the top two floors of a house off of St Clair West near Oakwood. At this point I was dealing with just Endometriosis…except my thyroid started acting up shortly after we moved in together. I went from 190 lbs to 220 lbs in 5 weeks. Then another 20 lbs came on over the summer. By October of 1999 I was 240 lbs. Thyroid medication was the only thing that stopped the gain. We have no idea what happened.

Prior to this, my now-husband had drifted away from his family. Because of me being such a lovey-dovey nosy person who doesn’t know when to leave well enough alone, I declared this ‘strange’ (I was 29 and stupid) and encouraged him to get in touch with his perfectly lovely seeming family! His ex-girlfriend was much like my ex-husband. Very artistic, loves to be centre of attention, not really good with details. Which means both of our houses looked like trash heaps unless he at his or I at mine did something about it.

This is the scenario when I, a former go-getter have my first child, which was actually a fairly traumatic birth, involving a c-section, yanking, tugging, more yanking, THE DOCTOR GETTING ON THE TABLE AND STRADDLING ME, and finally her birth. Still no idea about my EDS diagnosis at the time. After this, I have a year off, nine months of which is pretty good, and the pain returns with a vengeance. (Things are hazy about this time, two young kids, pain, migraines, under medicated). I got my daughter into daycare and tried to go back to work, but I couldn’t.  I had my daughter in daycare in February, and by October I was pregnant. It was the only time I felt okay. He was born in June of 04. I had to put him into daycare as soon as I could. He was too active and my pain returned too quickly. Yet as soon as she heard about my pregnancy, my sister-in-law asked me “why would you get pregnant again when you can’t look after the baby you have?” I was gobsmacked. I muttered something like accidents happen, although he was no accident whatsoever. I assume she was referring to our decision to keep our daughter in daycare while I was not working. Not that it’s anyone’s business, but she really enjoyed daycare, and it was good for her. Plus, what’s wrong with her Dad? Is he a potato all of a sudden?

After both kids were here, both c-sections (where I actually got online V-bac counselling from Michelle Duggar, who was on baby 7?, hand to God!)  I was in a lot of pain. Here is where my Mother-in-law comes to my rescue? No…here is where my Mother-in-law sees I am not working. Probably assumes I have no income.* Sees I am slacking off on my household chores (My husband has this terrible habit when he is talking on the phone of saying “I’m doing the laundry” even if it is I who was doing the laundry.) And starts encouraging my husband to take the children and find a new wife. He is certainly young and good-looking enough, she assures him. (Why would he tell me this? My husband has Aspergers, it probably didn’t even occur to him I would see this as anything but ridiculous. He is incredibly sensitive, and has grown so much, 15 years ago he was a bit green, and we had babies).

To complicate things, husband decided to take our co-sleeping sprogs to sleep in the other room so I could deal with this chronic pain that was cropping up. Only he didn’t say that. He just left. I was sure it was because I was revolting. Or, he had the children he really wanted. He could go off happily now. My DNA is so Oooh speshul.  Haha! I was so crazy partly,

I had been prescribed opioids by my GP for pain. Whee! No not Whee! Like high. Actually, I was joking with a friend who has something… that lung thing… we’d be ‘lucky’ enough to be roofed at a club, I can see it. Picture it: *Hmmm, I’m actually not feeling too bad right now!* Lol! Back to the story: Hydrocodone, I think? Anyway, it was fine, I took my dose just fine, every four hours on the dot. HOWEVER patients with EDS tend to metabolize medication faster than the general population, and I am one of them. I am done with a 4 hour medication at 3 hours. Cold medication, pain medication, everything. So for almost a year, I found out fairly recently, I was spending that hour essentially going through withdrawal, how many times a day? That must have been the worst time of my life. No, I honestly can’t think of a worse time. Should there be an equation for this? My time with my ex was awful but it was extended, this was concentrated awful.

I know my husband stuck up for me to his mother, but she just wasn’t having it. I think it bothered me so much because I sort of agreed with her. Things got so much better when I got to a proper pain clinic and on to long-acting pain medication. Then life started turning around. We had a housekeeper for ages, but he could only do so much. Our kids have Autism, our daughter needs to see everything, she spreads her stuff all over the living room.

Hmmm. This was supposed to be about my Mother-in-law, and I guess it was, but it was a bit more winding than intended. 😄

I will have to follow-up with part 2, with some quips.

 

Have a good day, Zebras 😘

 

 

*My in laws’ 50th was last year, and my husband and I paid for the party, and his brother and wife bought them something amazing or something, they have exceptional taste, anyway, remember now, my husband and I have been married – it’s our 16th anniversary in October. Because my husband and I work for banks, we have TONS of accounts. Also because I’m stuck in bed, my husband has a private account his cheque goes into, then he transfers it to wherever, I don’t follow how it works. But he needed an account and couldn’t wait for me to feel well enough to get to the bank. Well, when he paid or reimbursed his Dad for party expenses, he wrote a cheque on his private account, not thinking of the optics. Well, he’s received two or three thank you cards and gifts, but they don’t mention me or the kids. I don’t know if I should bring my bank statements showing my pension and my disability payments, leave them lying around? Nah, they’d probably match up the account numbers. Ouch.

Refinery29: 12 Women Discuss Whether They Regret Their Decisions Around Motherhood pt 2

Refinery29: 12 Women Discuss Whether They Regret Their Decisions Around Motherhood. http://google.com/newsstand/s/CBIwle2Szzk

This is such a fascinating article. I never had doubts about motherhood. Well, let me explain.  Throughout my 20s, I had assumed I would remain childless. Partly because of my five operations for endometriosis, partly because my husband was not suitable for raising children with, and partly because my mother told me I’d make a terrible mother, as I’d hate it.

giphy15It turns out I’m having a blast. I don’t like kids, much. We don’t relate well, but mine are awesome. Other people have said just that. It is quite a struggle with managing my pain, but I have an extremely supportive partner, who works with us as a team, not a sperm donor. He attends all our appointments, as the kids are both autistic. Our 15-year-old girl has Aspergers, our boy is 13 in June, is part way through testing. They are certain he is on the spectrum, but resources are so limited, they have to test further up the line before finishing him up. My husband has Aspergers as well. He cloned himself when he made my girl! 😂

I work hard to find other things to talk about besides my children. I have many child free friends. In fact, I was on those boards in the 90s! I even campaigned for a hysterectomy for a while, as it was the only thing on offer to really ‘cure’ my endo.

My life would have been very much different without children. I may even be in less pain. I certainly wouldn’t know the love, wisdom, and depth of spirit I do now. We had discussed the very real likelihood I might not be able to conceive. When my now-husband and I met, I was 28, he was 30. (It was Halloween, 1998, my birthday is November 3, I was 27) Wednesday moved in together officially in July of 1999 (unofficially, much earlier, but we got a place together in July) and on November 13, 2000 I got pregnant for the first time. This was my ectopic pregnancy, which had given us so much hope! I could at least get pregnant.

I started bleeding on Christmas Eve, 2000 in Barrie, an hour’s drive north of the city we live in (Toronto). It started getting bad, beyond spotting, so I had husband take me to the hospital. At the hospital they told me their ultrasound technician was off for the holiday (1:00 p.m.) but my cervix was closed, don’t worry. Meanwhile, not fine. We have holiday dinner at my brother and sister in laws house with parents in law, while I am bleeding, and cramping and trying to hold it together while I know I’m in hostile territory.  We had planned the surprise for tomorrow, but I’m scared as hell and turning ghostly white. Husband finally makes announcement he’s taking me back to a better hospital. Oh, and that I’m pregnant.  Mother in law holds her head in her hands. Drama queen. We traipse off to the hospital, where I don’t remember what happened, but we have to keep my parents’ car overnight. I have to tell everybody over the phone the good news. I at least get to sleep in my own bed. The next morning I went back to the hospital and they ran tests on me. They discovered I had an ectopic pregnancy. The embryo had stopped growing in the fallopian tube. If it had decided to rupture, I could have died. What kind of hospital doesn’t have an ultrasound technician? Doesn’t think of this possibility and suggests I try another hospital? I was lucky enough that they caught it in time and two doses of methotrexate took care of and dissolved that blockage. Because, after getting the all clear, it only took us two months to conceive our daughter. The original plan was, we would try the 6 months leading up to the wedding, and then immediately after, start IVF. Usually they make you wait a year, but they were so convinced, and worried about my advanced age and surgeries. I’m so glad to prove them wrong. Husband takes all the credit!

We were planning to get married the following October. October 16 is the ‘family’ wedding day. Rebels that we are we married on the 20th of October, 2001. I was 5 months pregnant with Dorkus.

I remember those nights of pulling my daughter into bed because she wouldn’t stop nursing. She eventually stayed there. I’ve had days of stumbling around and not being able to see, so tired.

But she grew, she became more independent. It wasn’t long before I wanted a bigger family.

I must say, being adopted by my dad, with a half-sister, having genetic relations around is neat!

Honestly, my menstrual cycle returned in July, 2003. September, 2003 I had an ER room visit where I was clutching my abdomen in pain. I could barely speak, I was moaning. They were certain it was my appendix, although they couldn’t find it on ultrasound. They decided to go in after it. They removed a perfectly good appendix and I started my period the next morning. The nausea from the anaesthetic lifted after two weeks, but then I started getting sick again. Our boy was born in June of 2004.

I’ve never regretted them. They are my family.

Just today, I had such pain, I needed comfort. I asked my son to come snuggle me. Just sit with me and watch the Simpsons while I fell asleep.

Best nap ever.

One one side, I do have incredible pain and very little to no support from extended family. On the other hand, I have an extremely supportive, willing and able-appearing partner, who pushes through the pain of his own arthritis to keep us on track. We are in a first-world country with adequate health care that I have extended benefits for and the income to access, not to mention the skin tone.  This all contributes to making things slightly easier for me on that side of the equation.

Although, we left our kids with a sitter to actually go out, once. We went to my high school reunion. 25 years. Back in Winnipeg. We had adjoining rooms and the kids bounded in the next morning and wanted to know who was in bed with me. They didn’t recognize their father. 😄

I think we’ve left them with my parents a couple of times? Few? My Mom has taken our daughter to the library, we’ve spent time with them. Husband and I went for dinner for an hour and a half. No more than six times for sure. We just didn’t see them that much. Never with his parents. I was in labour with our son and we had asked them to come stay with our girl. They wanted to take her to their house and hour away! No! I want her to meet her brother! First! They didn’t get it. My Mom to the rescue! Or I would he rave been alone.

I don’t know if I told this story. I tell about my daughter’s birth, but when my son was in labour, the nurse checked my progress with two fingers and he grabbed them! She said he must have had his hand up by his head!

Parenthood: I feel like I’ve been given the greatest puzzle to solve. The more I put into it, the more love I get out of it.

Goodnight, Zebras! 😘

It’s the middle of the night, I hope this makes sense! 😘😘😘

One Lovely Blog Award

wp-1487621709466.jpgIt’s a long weekend here in Canada, and I spent all day yesterday puttering around. I didn’t make time to blog. I still wasnt feeling great from the bug, but I’m recovering amazingly well, compared to how I’ve fared in the past. So it was a lovely surprise to find this notice in my email this morning!

I had been nominated by fellow migraine sufferer and football fan MyGraine  (Thank you so very much! 😘)

 

Rules:

  • Thank the person that nominated you and leave a link to their blog
  • Post about the award
  • Share seven facts about yourself
  • Nominate at most 15 other people
  • Tell your nominees the good news.

 

About this award:

A fantastic reminder to be positive and get behind all of the artistry and bravery of those sharing their stories and thoughts.

 

Seven Facts About Me:

  1. I am a huge Monty Python fan. My girlfriends and I used to get together for sleepovers in middle school and watch Monty Python videos we had recorded on Beta max. My son sings “Always Look on the Bright Side of Life” constantly.  My favourite character is Caebaernog.
  2. I married my first husband in Las Vegas, on the same day as Bruce Willis and Demi Moore got married. My ex husband later introduced me to my current (and last!) husband, who is the absolute love of my life, so I know he, at the very least, turned out to be good for something.
  3. I love the Toronto Raptors, they played their first professional game on my 26th birthday.
  4. I sleep with an adorable pink rabbit that used to belong to my husband.
  5. Both my children and my husband have a form of autism.
  6. Animated TV shows for adults are my favourites. Bob’s Burgers, Archer, and The Simpsons are what I usually watch.
  7. My ex husband used to call me hamster girl, because I love organizing and reorganizing things, and I can usually be heard rustling through papers. Trouble is, these days I get halfway through and I’m tired out.

 

My Nominees

  1. Arianne at Zebrawitch.
  2. Cait at Warriorprincesscait.
  3. Vicki at Lady Chariot.
  4. The amazing twiggyjen44 blogging at Jenlandia .
  5. Megan at http://www.justclicklikeblog.wordpress.com.
  6. http://www.Mychronicpaindiaries.wordpress.Com
  7. Capricious Lestrange at http://www.disabilitydepotblog.wordpress.com.

 

It’s been quite a day! Have a lovely evening, my Zebras! 😘