Upsetting News

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Ugh. My husband called the pain clinic to harass them about my not getting callbacks. When he listened to the Clinics outgoing message, he learned that my doctor, the head of the clinic, is away indefinitely.

I’m frightened.

Firstly, he did not look at all well at our last appointment. He is quite overweight, and looked pale and well, grey.

Secondly, he is not a young man. Going by his graduation dates, he is in his late seventies to early eighties. He has been pushing himself hard, working at least five days a week at the clinic, and travelling all over the world lecturing on pain management. I do hope he is able to recover.

The clinic has assured us it is still running, but, selfishly, I have my shots in two? Weeks. Nobody is as talented as he is. I’m going to get some hesitating ass. Nightmare.

Currently I have referrals out to:

  • Neurologist
  • Gastroenterologist
  • The hand and knee specialists retired so I’m waiting for the EDS clinic.

My heart test came back, it was ‘grossly normal’. Now the EDS clinic has everything they need, and the Manager said we should hear from her within a month, if not to contact her to find out what is going on. I don’t expect an actual appointment, but a date gives me hope. โค

My good friend is moving an hour and a half out of the city. I dont get to see him much anyway, but he was offred a great spot in a retirement home and he can’t pass it up. We talked for an hour last night and damn it cheered me up!

It’s just so hard to get together with people when you feel lousy, and your kids take over the house, it’s not that big to begin with, and you can’t even serve tea. You don’t want to treat your family as staff, but you want friends to yourself, but as adults, do they come over and hang out in your bedroom? What the hell, sure! ๐Ÿ˜‚

I don’t like this change nonsense.

If you can pray for my doc, I’d appreciate it. I hope he just needs rest.

โค

Worn Out – Part Two

I wanted to add some things to my earlier post. Some caveats, per se.

It’s certainly not everyone who contacts me on Facebook messenger or interacts with me that has been a problem or has been selling to me, let me be clear. I have made a number of new friends with people I have in common with others, and it’s been a lot of fun getting to know people. I’ve had several message me and want to chat, and I welcome that. Approximately 75% have been respectful. 5% have been perverts. 5% have been ‘you need to do this…’ types, and 15% are sales.

I do not mind being approached by people I have known for even a few months. They are generally nice, they converse, they continue to speak to me.

But when I’m added to a Facebook group about healthy weight loss through diet and exercise, or the best entertaining recipes..it’s like you don’t even know me. I’ve been added to seven Lula roe groups and I don’t think those things fit me. They are not pajamas or people clothes. Nix.

I suppose it’s just added to my long week that every second day someone was asking for something. Thursday, I think, some lady I had just recently friended was asking how many wraps or shakes I wanted. Since I’ve been subsisting on cookies and almonds this week, none, thanks! ๐Ÿ˜ข๐Ÿ˜ข๐Ÿ˜ข I had never spoken to her before, I didn’t answer and she hasn’t been back. What I think bothers me is there doesn’t seem to be any interest in pursuing any other relationship. I’m slightly put off by that. Of course, I’m deleting and blocking so they can’t re-add me, but, it’s so…defeating.

It’s not as many people as it feels like, it’s just been a few in a week. And when they disappear because I’m not a customer, before I get rid of them, I feel rejected. There have been a lot of friends who do check in and stick around and I do know this. I’ve been in the wrong place at the wrong time all week.

I often play into that goofy, ditzy, on-her-meds stereotype because it’s easier than calling people out on their bullshit.

I put a care package together for my Mom, and I was so excited, it took a lot to collect everything and mail it. It got to her, and I was so busy with the kids I didn’t get to call. Finally I did, and it was all complaints. The package had sat in the box for a week. The chocolate almonds I sent were stale. (I had some, I thought they were good) then she said she probably doesn’t like chocolate. Oh, hey! Have I heard from my sister? ๐Ÿ˜” I don’t expect everybody to be happy all of the time. But every single person this week seemed to be having a bad day. And I was so disappointed I had let her down. I had ripped apart the bedroom to find the kids’ school pictures, sourced a special wash cloth for her, and when my friend’s son was selling chocolate almonds, grabbed an extra two boxes and didn’t even eat them! I know, it had nothing to do with that. I know that in my head. She doesn’t have an easy life. And when I tried to do something good, I fail.

Sometimes I wonder if people think I’m okay to treat however because they assume I don’t have any real responsibilities.ย 

I’m so sorry I’m so cranky. My neck is really sore. My pain was down around a 5 all last week and now it’s at a 8.5. My knees are clicking, my elbows. I can’t get warm. Husband has the children all week, so I can hide from the world. I’ve been shopping. Ugh. I’m over my budget, and I’m finding things I ‘need’. The only thing I think I could do for extra money is cam girl. I know I have a limit to my earnings. I’d be surprised if I could drum up enough interest in…I don’t know what I’d do? Blog? Put on makeup live? Yay? Is there a Fetish…oh rule 34…let perverts watch me sleep? ๐Ÿ˜ maybe I will cut down on shopping…. yes I think that is the better decision all around.

I am aching so much right now. I am going to start the breakthrough medication I’m prescribed tomorrow, I think. I will have to order my cannabis in the morning. On a whim, I decided to check to see if I could order, and I can. No email as promised. I am ticked. I was spoken to like I was asking to get my new teapot a day early, and was firmly told Monday, be patient and I would get an email, but here it is Sunday, no email, I’m too tired and on meds to do it right, and here it is. How long has it been there?

I have a headache that feels under my scalp, my neck hurts, I can’t warm up. My joints are so achy. My wrists and elbows. My jaw. My pubic bone my right abdominal side, any movement means I want to cry out. This week is about rejuvenation and healing and rest. And trying to eat more than cookies. And almonds. No other food wants to stay down. We order our pizza on Sundays, gluten-free, lactose free, and I enjoyed it. But i had to lie down for an hour. Everything I ate, every bite today, I needed to lie down. So, I will be having fun with that. Plus, online shopping to a minimum. Or none at all. Except for the Urban Decay launch on the 23rd.

I’m going to try to keep my voice from sounding simply snarky and give a reason for that anger, if that makes sense? ย I’m a bit reflective these days. In the morning when I’m up and medicated, it may help as well. I may have some time to relax and zen. โ˜บ It’s difficult to convey your true inner self when you’re in pain. Maslow’sย hierarchyย and all that.

I’m crying from pain and frustration, but going to try to sleep.

Goal for tomorrow is painting my toenails! ๐Ÿ˜„

Have a gorgeous moment today, Zebras. Just one. ๐Ÿ˜˜

 

Worn Out

It’s been a long week. I don’t feel like I’ve had much time to myself. My kids have been needy. Which is fine, I just haven’t had any recovery time. I don’t feel like many of my interactions with the world have been all that pleasant, either. Every second person who contacts me on Facebook messenger is trying to sell me something. And these are brand new friends, not people I’ve had interaction with!

My lovely husband ran out and picked up new cable boxes for us last night. All last week they wouldn’t turn on, I couldn’t get any television at all..unless it would randomly decide to turn on, which it did occasionally. But mostly it would be pixillated garbage. The cable company would reset, but last night they finally said, yeah we have to replace those things, so he took them in. It’s great, because now I actually have room to record stuff. This has 400x the space or something. But the downside is I can’t read the guide. It’s on my tablet, but… blah.

We did our taxes. We spent $34,000 on out of pocket medical expenses last year. We are damn lucky to have that money, that’s my pension/Ltd money income right there. That went to medical marijuana, therapy for me and the kids, orthodontic work, likely, and my injection fees for Botox. I was mistaken about the tax situation. It turns out we get 3% of it back in our taxes. Whee. I don’t know what I could have done without that treatment. I’d probably be dead. I’d be in so much pain. Those are my two main sources of pain relief, Botox and mmj. Not to mention getting into the pain clinic which costs. There’s a huge fee. I’d have done myself in.

My neck is hurting so bad and I have such nausea today I am in tears. I had to help my son today with homework, and I snapped when he stabbed me with his pencil once too often. I feel awful.

I just need a break. I need a night out. With friends. Not a tall order at all!

Hope you’re having a great day, Zebras! ๐Ÿ˜˜

 

 

Frustration

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There is so much truth to the old adage that says your life can’t be running well in more than one place at a time. So while my body isn’t in pure agony, all my relationships are in relationship hell. Well not all of them, but most of them, and some are actually just in relationship purgatory. At any rate, I sure am feeling low today. I’m just going to muddle through as best I can and see what happens. 8m just not certain what else to do anymore.

For the record, I don’t think everything happens to me. In fact, I’m pretty certain we are all blessed fairly equally in life, if we look at things. We don’t all have money or friends or health or brains to fall back on, but over a lifetime, I think most of us get lucky in a couple of places. We get a good spouse, or we meet a good friend, or we have luck with money, or we are lucky with our careers, or we have good health. I think we get pretty even in the end.

Since I’ve graduated high school, ย I haven’t had a good friend who has had time for me, and I don’t mean every minute of every day, but once a week for fifteen minutes, and a genuine desire for my friendship, not seeing me as the crippled friend collectible. I’ve started a few friendships, they’ve fizzled, usually because I can’t get out, or had to cancel plans too many times, or things just fizzled. There are the friendships with men, where they always wanted something more. I have one friend now, everything I post something that triggers her on Facebook, she posts about how privileged I am. Lots of friends post about how we need to make the world more accessible, but not a single message asking how I’m doing. Disabled in the abstract is fine, but do you really want to deal with them one on one?

My husband snapped at me last night. It was even more painful because I’m in so much emotional pain. I’m realizing people I thought had my back, don’t. (I don’t mean my husband) He is exhausted, his eyes hurt, he has a cold, our boy is being a sassy jerk. He’s almost 13. I said something he didn’t expect, I was right, but my tone was off, as I hadn’t spoken for a while, that happens to me sometimes. I have trouble regulating air, and just, well, sound weird. My son had said something, he snapped at my husband, something like “I can’t take this anymore! I’m going to bed” and my husband was like where does that come from, and I said our son was imitating husband, because husband says that almost every night. He apologized, but it still felt awful.

People don’t hear this stuff because when they talk to me, they don’t ask. They call and tell me their problems. They ask how I’m feeling. I give them a brief description of my pain, because they don’t care, and then I listen. Because I’m Yoda.

I’m whining about this because I don’t think this is unique to me. I think this is fairly common among my zebra friends, and is the reason most of my actual friends are other zebras.

I’m still bummed about my ex-brother-in-law dying. He was a decent guy. I have no one to discuss this with as my husband is not impressed. He can’t fathom a decent guy being brothers with The Weasel. I can’t talk to my ex. Don’t want to open that crate of worms. So, I just sit here. It will pass. He was only seven years older than I am. Five years older than my husband. Cancer. My ex said it was from steroids? I know he played football, but he does get things wrong.

I’m trying to get my son to school, but he’s still so anxious he won’t go unless someone walks him there. I’m so worried for this kid. He made it once this week. My therapist pointed out things could be solved if I could just walk him to school. She’s right. Although, I would probably be working if I could walk. And really, walking him would just be a panacea.

Today should be interesting. I had a glorious nap yesterday. May do it again, today. Makeup could be on the agenda, as I concentrate on it and get out of my head for a while, it’s something I can DO. Unlike colouring, reading, TV, Netflix, jogging, cleaning, writing (for too long) etc…

My husband is talking about coming home to help our son to school as it’s the last day before spring break, and he needs to pick up any home work assignments.

Will definitely be staying away from Facebook much of the day. I’m feeling far too sensitive to venture into those waters. I need to know my limits. Lots of people are closet bullies. I don’t know why they hate closets so much! ๐Ÿ˜€

Sorry to be such a bitch today, but I needed to vent. Thanks for listening! It’s very much appreciated.

Have a fantastic day, Zebras! ๐Ÿ˜˜

Musings

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I had a huge nap this afternoon. ย I’m feeling somewhat refreshed. I can always sleep. That’s the problem. These damn medications. If I take enough to ease my pain, I am drowsy. If I take a sleeping pill so I can actually sleep, I’m tired the next day. If I don’t take the sleeping pill, I have painsomnia.

That right lower quadrant pain is back. My husband calls it my porcupine. I may have started that. It’s so painful. I’m nauseated. I haven’t eaten much today. That may contribute.

Am feeling slightly disappointed. I originally started this blog to help my friends understand what my life was like. Instead of writing it on Facebook, which I felt was intrusive, I brought it here. You guessed! No one is reading, I’m speaking to people who already know what it’s like.

I find I’m running into envy from people who don’t know what my life is really like. From people who presume I’ve had things easy. I try not to complain about my aches, my pains, my financial burdens, my pain crises, because it’s boring. It’s boring to read about, and it’s boring to talk about. I don’t want to focus on those things. I want to talk to my friends and be a real person. An average person.

Glancing at my Instagram feed, you may get the impression I live a luxury lifestyle full of makeup and glamour. I do buy a lot makeup, and I constantly feel the need to defend this, however it is my main form of entertainment. It is essentially all I do for fun. I do not leave the house most months, so buying some makeup, putting it on, taking some Selfies can be tons of fun! Throw in an old product once in a while, plus my husband goes without so I can be entertained. My children are not huge consumers, and having free time plus loyalty points means I can cash in on sales. It, like most of the internet, is illusion.

I know I have advantages. My husband makes quite a bit of money. Why does nobody ever ask me about the career I lost? The one I’m mourning? Do they know his every success kills me a little inside? But we are sacrificing much of our kids’ future on medical expenses. Without some clever accounting, and massive amounts of luck, we probably wouldn’t be able to retire at all. My husband currently has to work until age 72.

Many people assume I don’t have an income. As a 50th anniversary gift, my husband and I paid for my in-laws anniversary party. They were given a cheque from our joint account. They still thanked him. Sent him a thank you card, and bought him a thank you gift. We’ve been married 15 years.

Another thing is that I am older than many of my friends. I don’t know if it’s the EDS that’s kept my face youthful looking. It could be good genes, or perhaps hiding in my bedroom for 15 years away from sunlight, but maybe people think I’ve achieved things at the age of 30 instead of nearly 50?

I don’t know what to do to dispel these myths. Do I start being honest? How does one be honest and upbeat? Can it be done? Maybe I should try anyway. I’m sick of being treated like an airhead princess.

Stay beautiful, Zebras! ๐Ÿ˜˜

My Life as a Spoonie

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I go through these periods where I am just exhausted all the time. It happened yesterday. I lay down for two hours. Slept right through my alarm, and my family woke me up at 7:00 to have cake. Mmmm cake! There is an illness called Sleeping Beauty Syndrome. I’ve often wondered if I have a variant of it.

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Cake!

My day typically looks like this:

  • Wake up at 6:00 am, hit the snooze for half an hour.
  • 6:30, washroom
  • Answer any questions or comments on Instagram and post until 7:00.
  • 7:00 am take medication. 13 pills. One mouthful.
  • Post on my Beauty Blog usually until 9:00 am.
  • Between 7 and 9 am, have coffee and oatmeal delivered by husband and daughter, coax son into going to school, monitor progress by text, and monitor daughter’s progress by text.
  • 9:00 am vape marijuana. While perusing Facebook and catching up with friends. Talking on phone, reading email, texting husband. Online shopping.
  • 11:00 start thinking about the EDS Chronicles.
  • 12:00 lunch and blogging. Lunch has been left for me by my husband. 1 oz of Lactose free cheese and some gluten-free crackers. I hate eating. I have cookies, too.
  • 1:00 my post is usually up, lunch is done. Here is where I either nap for a couple of hours or do something else. If the pain is bad, I sleep. I try to play with stuff for Instagram or my Beauty Blog. I want to read, too. But my concentration has been awful.
  • 3:00 Dr. Phil. I watch the first five minutes, call him a quack and tune out. Time for pills.
  • 4:00 sometimes my boy comes up and watches the Simpsons with me.
  • 6:00 is pill time.
  • 6:30 Husband is usually home around now. I’m still stuck in bed. Daughter rules downstairs, she just feels like she needs her space, and it’s so uncomfortable for me, so tough to get down there, it’s not worth it.
  • Between 8:00 and 9:00 I get the pictures for the next day ready.
  • Husband comes to bed around 9:00 and we have time together. It’s also melatonin time and time for marijuana oil.
  • 10:00 last pills of the day. I usually read a few last articles and then put my arm brace, mouth guard, and CPAP on and by 10:30 I’m out.

It’s been good not sleeping as much. I used to sleep all day almost every day. I was afraid I would never get enough rest. But I was tired all the time, anyway. This is different, though. This morning, I woke up and I couldn’t uncurl. I couldn’t straighten up. My abdominal pain is just so bad. My back pain. Maybe I’m having a childbirth flashback? ๐Ÿ˜‚ since it was my daughter’s birthday yesterday!

I pause a lot for rest and breaks in everything I do. I have cramps, my hands hurt. Things work out if I work to my limit and go slowly, but all it takes is one day to mess it up. One day where I want to go out. Then I am in bed for a week. I can’t do anything. In fact, I’m feeling the strain of the other blog. I’m just having so much fun, though. Why can’t I keep anything?

I’m supposed to meet my friend tomorrow. ย I hope she’s okay hanging here. I’m hurty. I’m still going to try to bathe. I have a sore on my hip. I find I get them even if I’m clean. It’s from skin rubbing together, right? They smell awful. I have cream. Ugh. I don’t have a lot of hanging skin from losing weight, but when stuck in bed, you get squished a lot.

My husband was super sweet the other day. I nearly had a conniption because Shoppers Drug Mart, a drugstore here in Canada, is now carrying Pixi Beauty! It’s a super high end drugstore, without high prices. It’s amazing. Anyway, we were having an ice storm here in Toronto, and they had stopped the streetcars, so he had walked partway from work, feeling terrible because he’s on steroids for his eyes, and he stops at the store whilst waiting for the bus and texts me asking what I want. So we settle on quite a few things,

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What darling husband bought for me $124 CDN

After the excursion, and he at first found the makeup, and he persevered and found the skincare, he just missed the bus and had to wait 30 minutes for another. What a sweetheart. He needs to do so much for me. Like cooking my dinner. Bringing it to me. Getting my clothes out for me when I go out. I don’t know what I would do without him. He’s also my very best friend. Imagine that!

I was too tired to eat dinner last night. I had just woken up from a nap, and I was still too tired. My back is killing me.

My husband had glaucoma and cataracts last year and needed surgery. He’s only 48. He’s had a bad infection that started before the surgery, they had it under control with steroids, but as soon as he went off them, it came back. Now he’s on super strong steroids and doesn’t feel well. He was complaining he didn’t like the general feeling of unwellness and achiness all the time. I just looked at him and he apologised! I laughed. It’s fine. It isn’t fun. Poor guy.

Be well, my zebras! ๐Ÿ˜˜