Time Flies…

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Hi there! I know I have been super neglectful, but the last couple of months have been quite the rollercoaster and I have not had the spoons to also actually get off my arse and keep you updated, so now the time has come.

Firstly, I finally got in to see a gastroenterologist  and a fellowship student. Hallelujah! They listened, asked questions and took my concerns seriously! I am on a few new medications, I can’t even begin to describe how much better I am feeling. When you go from pooping every 14 days to nearly every day, what a difference! My back pain has cleared up considerably. I have a number of tests to do in January, scopes and such, so hopefully we can learn what is going on. Rather annoyed this took so long, but was rejected by rather a lot of doctors.

My chronic migraines are leaving me so dizzy I’m having to use my wheelchair more than I would like. I was referred to another doctor as my new doctor is studying for a year, and I think it will take some time to adjust. First visit, he injected into my jaw and chewing has been a nightmare since. I see him in a couple of weeks, so I will discuss this. He seems nice, so it shouldn’t be a problem.

My vision is so bad I can barely see even with my new glasses, so I’m going to try to get that sorted. I think it’s the migraines, but who knows?

My kids are struggling with school attendance. They love school, but anxiety is high, and with autism and learning disabilities, it’s just not easy. They get pretty high marks, though, so I hope they can pull through.

I’m still having trouble sleeping. I’ve been begging for help for over a year now with no results. I was told I needed to see a psychiatrist as they are the only ones who know about sleep medications, but when I brought it up to my doctor again he told me it was a waste of a psychiatric appointment. I have no idea what else to do. I’m becoming suicidal and wondering how much longer I have to live before I can say I tried. When I spoke to another doctor about crying from exhaustion she said “oh, yes, so you’re depressed.” My jaw dropped.

So everything is fantastic, as you can imagine. I am so tired of fighting to be heard. It’s frustrating to say something to a doctor and have them completely talk down to you, then have my husband say the same thing and they suddenly switch on their understanding. For example: I spend most of my time in my bedroom, but I’m not lying down or sleeping,  I’m puttering around.  Doctor tells me I’m lazy and should do something so I will feel better.  Husband repeats what I just said, Doctor now understands that I spend the day doing crafts, playing with makeup and puttering. It makes me furious!

I’m going to take a break now and cry some more. I will try to be back to a more regular schedule. Perhaps not as mentally deranged. Although I have a sense of humor about it. 😜

Hope all your pain is fleeting!

❤🦓

 

Painsomnia, Regrets.

I shared an article with my husband about one of the Teen Mom’s from MTV getting ‘butt and vaginoplasty’ procedures on-camera, grinning away. And he’s been making hilarious jokes all night. No body shaming, mostly about him going along to get his butt tightened when he’s not being relaxed about things.

http://www.ibtimes.co.uk/teen-mom-farrah-abraham-blasted-posting-private-photos-instagram-do-you-have-no-shame-1633533

This was the story, if you want to read it. I hope they aren’t tightening her uterus. Just, no.

 

I’m feeling sort of low. I’m reminded of so many of the accomplishments of my friends, and I had to cut so many things short. I was reminded the other day of a friend I’d had for 15 years, and was insanely jealous. I had no clue about this. That is the part I feel terrible about. I suppose I don’t spend time with people I don’t like, and if I do, I don’t blame them. But she envied, I’ve been told, my marriage, my babies, and my job with a bank. Oh, and house with another person’s income it was easier. I envied her ability to work and do something besides sleep. Her relationship with her parents, her baking skills, her bilingualism. I didn’t get to say those things because I felt it was weird to be nice sometimes. She would accuse me of buttering her up to ask her a favour.

I regret that I couldn’t finish university. I don’t know how I could have made this work. My dad was pretty mentally ill when I turned 18, and he wanted me out of the house. He wanted me out forever so he could have my mom to himself, but that’s his thing. So when I turned 18, I was out. I had no where to go. I ended up staying with my boyfriend, who was 10 years older. He was living in a different province. He was then transferred to a third province. I tried to enroll in school and apply for a loan, and was rejected. Apparently, my parents made too much money, and should be funding my education. So, I’m screwed, unless I’m married or 25. Whelp, there hadn’t been too much interest so far, my parents had convinced me I’d be lucky to get married at all. And this guy was willing, we got married in Vegas in November of 1989. Same Day as Bruce and Demi.

There are some people out there who absolutely loathe me for this. One even called me out in the middle of my 25 year high school reunion. Where were they, though, when I had no other place to stay? When I could have used maybe a decent boyfriend? Nah, I was too ugly. Nobody has actually come forward and told me why they are upset or hurt. I’m actually completely bewildered. I have not come up with any sort of explanation for this. I wasn’t even that close to these people. People are always looking for an excuse to hate you. It’s like a rubics cube.

Yes, my first marriage was brutal is a lot of ways, but I did learn a lot, also. Whatever the case, it led me to my current husband. The place I am meant to be. Sometimes you need to go through hell to get to heaven.

I hear other rumors, though. I hear whispers about my “perfect family” and “privilege” that got me a house in downtown Toronto.

Hey, there. I hear your whispers. I see your glances.

I have some privilege. But don’t you dare forget I worked three jobs for seven years, two of those years while going to school, when I did dip down to two. I have been working since the age of 12, securing them and transporting myself.

I have endured five laparoscopic surgeries while working, most of them taking less than three days off for recovery, instead using weekends to recover. All while in increasing pain, exhaustion, being told I was fat, work out more, eat less, and get over it.

Divorced the first guy, married the second, kids were supposed to fix the endometriosis. Had 2. Got sicker. Finally had to concede working.  Sister in law asks while pregnant with #2 “Why would you have another baby if you can’t look after the one you have?” Because we put my daughter in daycare after I tried to go back to work and failed. Nice. My husband is an incompetent child rearer? Thanks. On LTD.

We desperately wanted a third child, but decided we could not afford financially nor emotionally to support one.

My children, both with Autism, act well in public, but are becoming troublesome in private. School refusal has been a problem with the boy, and I don’t know how next year will be.

So if anyone wants to trade lives with me remember, I envy those who:

  • Can get up and go for a walk
  • Can eat some food, whatever they like without stomach cramps
  • Can get up and go somewhere
  • Can stay awake for more than 3 hours
  • anytime but midnight
  • Don’t hurt all the time
  • Can have some fun
  • Can go dancing
  • let’s go shopping!

 

I’m really okay, my husband is the best. He is so sweet to me. I wouldn’t travel this journey without him.

I suppose someone else (me) being content is really tough for people to figure out. True no drama.

 

Right now I’m in so much pain I can’t sleep.

  • Gastroparesis means my bowels are full and rumbly. They’ll be like this and cramps for a while
  • My neck is screaming in pain
  • I have something across the back of my head that hurts. Long ago head injury?
  • I may have a cyst on my ovary, occasional cramping
  • My back hurts
  • jaw pain from head troubles

Actually, not a bad evening. Going to try to sleep.

 

Improvements in this Crisis

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I had a very good day yesterday, considering. I feel like I’m getting the hang of this, even though I really would rather it go away entirely.

I even had the chance to play with makeup. It isn’t a huge deal, but I had a good time. Took some nice photos. The Becca x  Chrissy Teigen palette is really great!

It seems I have a good few hours in the morning, from when I get up at 6 until 9, and then I need to rest, preferably lying on my side, and then I have a bit more time, after my vape. But then I need to nap. On my left side for sure for at least three or four hours. Then I can semi sit up for a couple more, the rest of the evening is spent alternating between lying on my side and trying to sit up or be propped up on pillows. I get somewhat dizzy being propped up, but I don’t want to give in too easily, I want to heal, yes, but I want to develop tolerance as well.

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I still am quite nauseated, but it’s diminishing. The back of my head is very tender. It makes me think this is more to do with my skull fracture of 1992. I just have a feeling. I don’t have the headache I did, but I have a lot of pressure that builds along my jaw around the back of my head that builds where a headache would be. It’s very strange.

The good news is, I’m more comfortable, at any rate. I’m still not certain what will come of this, if this continues, I will just hang on until I see my pain guy next month. My short-term memory is shit, but I will just lay fairly low until then. Try to not embarrass myself. Too badly.

Have a wonderful Wednesday, Zebras! 😘

Scary Pain

My neck is so painful right now. I have my neck pillow on, it’s worse if it’s off. If I move, the nausea gets so much worse. Left is worse. The pain comes around my head like a crown. My teeth are even numb. It’s slightly better if I click something at the top of my spine into place. Like, near the base of my skull? I’ve been trying to pretend I’m normal, but it’s affecting my short-term memory, and I’m scared by the intensity of the pain and nausea. I haven’t taken migraine medicine yet, because it’s not like any I’ve had before, and is on both sides, would it work?

I’ve tried Tylenol. My husband told  me to. He had a reason,

I can’t see my pain guy for 5 weeks. I can’t live like this that long. I think we should call him. Trying to get hold of my husband.

This is awful.  I don’t want this.

Can I have some fun disease?

 

Needle Day

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The past couple of days I’ve been in just incredible pain. It feels as if someone has been standing on my shoulder trying to chop my head off. It has been incredibly painful. Fortunately,  I had my Botox treatments yesterday, and they help immensely. I’m waiting for the juice to kick in, but they mix it with lidocaine, which helps.

He got my jaw and pubic bone good this time, I screamed at the pubic bone shot. He felt for the trigger point, I’ve known this doc for years, or it may have been my husband, they work together now. It’s sweet. I love the way my husband gives the doctor advice and he actually takes it. Aspergers isn’t all bad, also, being white, 6’5″ highly intelligent, male, and used to people listening to you helps. I’m usually in too much pain to do much more than grunt or squeak.  Husband translates. 😂

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The end of the session. My doctor ran out of there. I don’t think he likes my screaming. It is kind of intense. Not fun for me, either. You know how they say beauty is pain? So is walking.

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Since I only go out for doctor’s appointments, we commemorated the occasion of being fully dressed with a photo! This was before I learned the horrible news. Here’s my dilemma. My home scale says I’m 200.0 lbs exactly. It measures Andrew to what we’ve found is the proper weight on almost every scale. I went to the doctor’s office and was in a room I’m in only maybe 1/4 of the time. That scale weighed me at 210.0 lbs. Which one do I go by? The one I have access to? Or the one shoved in a corner that had files on it that I don’t even know is in use? 🤔 puzzled. (If this is my largest problem? Thank the Lord! Right!?!?)

My doctor is sending me to the EDS clinic at another hospital, which is confusing, because I thought he was starting an EDS clinic. Either that fell through, or we will have two? We can’t have two. He said the wait list wouldn’t be long, so that’s reassuring. I am starting to enjoy things and pains is getting in the way.

I enjoyed nesting this weekend. It was very enjoyable. I rested yesterday. I was hoping to come home and do some things, but no. That was too much.

My son came and cuddled with me. It was nice. I need more of that. 😊😊😊

Have a lovely day, Zebra friends!

 

Mixed Emotions

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I have the feels again. These are mostly anger and shock. I’m finally vaping the higher dose THC pot this morning. I mixed it with just a bit of my regular stuff because it has certainly little cannabinoid in there and I wanted it to be something substantial, not a desperation experiment. Well, here I am, and my back doesn’t hurt finally. I don’t feel stupid. I feel tired, but relaxed. Cold. My pubic bone hurts. My hands hurt. I don’t feel like sitting around playing video games. I feel productive. Artistic. Comfortable, almost. Getting there. I’m hungry.

I know I’m angry. Angry that I was kept from pain relief because… why? I can’t be in as much pain as I say I am? I must be a drug seeker? I remember joking with a (male, ironically) friend about us potentially being roofied, and surprising some guy/gal by saying “ooh, I feel great, do you have another of those things you slipped in my drink?” 😄 I’m one of those EDSers that is tough to drug. I used to blame my weight, but I don’t think that’s entirely it. I seem to have a high drug tolerance.

My body has been feeling not hellish for five minutes, it’s been nice. I have been struggling through. I put together a post for the beauty blog yesterday. It took me all day, but it gave my day some structure. I took a couple of naps, rearranged some things on my computer, watched TV. It was nice and peaceful. I remember how my parents used to nag me about making friends and being friends and going outside, and I have brief moments of anxiety that I’m not talking to enough people. But then I remember what happened last time I spoke to people, and I hide under the covers.

So, to recap, emotions: anger at my old pot doctor for withholding working drugs from me, gratefulness to my new pot doctor for listening and caring, anger and hate toward my genes for this situation to begin with, happiness at the momentary relief, annoyance at my internal dialogue, bliss at the momentary silence.

I was so out of it with pain the other day my husband came over to help me fid something. He handed it to me and I actually said, “Good Boy!”. WE DO NOT HAVE DOGS!!!

My Botox treatment is on April 4th, so that is one week. I just need to hang on a while longer, and we start the circus again. I can feel the pain in my head returning, I’ve had a slow, dull headache for a couple of days now. My neck and jaw just ache.

I want to crawl out of my body. Just leave it behind like an exoskeleton.

Wishing you a great day Zebra buddies! 😘

Feeling Okay

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It’s strange to wake up a couple of days in a row and not feel like you had been locked in the trunk of a car overnight. My back is still sore and my breasts have been inexplicably tender for the past couple of weeks. The nausea is still present, but quite diminished, which is a treat! However, the pain is so much less. I feel normal?

I did add to my troubles yesterday when I had dinner. My husband feeds me a half a cheeseburger with bacon for dinner on Saturday. We have been discussing the size of patty for a year now. I told him he needs to make them thinner or remove the bun. He grudgingly removed the homemade bun, but it was back last night. Knowing he went to the effort, I tried it. Wham! As I opened my mouth, and then wider I could hear the creaking of my jaw and then felt the flash of pain. I felt the whole bottom part move over? Is that a thing? I don’t think my jaw opens smoothly, it opens partway, then moves to the side to open more. I could hear the grinding and clicking, and then a snag. But the pain! I will speak to my dentist when I get there. I had a pretty bad headache last night, but I’m just a bit sore today. Soft food.

I did get lots of stuff done yesterday! Played around with my makeup, got some shots for my Instagram, Beauty blog. My daughter harassed some people to ask why they aren’t following my blog, it was sweet. 💜 I must be dying 😂

Vaping is the activity of the moment, more makeup (lots of stuff dropped this week) and hopefully I don’t try to overdo it!

Wishing you some pain diminished moments, Zebras! 😙