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. ❤

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! 😂

I don’t like this change nonsense.

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

Healing Sleep

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My husband took yesterday and today off to take me to appointments.

I had to go to the doctor on Tuesday, as I didn’t sleep at all on Monday because my tongue hurt too much. It feels like I burned it on hot coffee now, but there were blisters before. Ugh.

Thursday I couldn’t stand I was too weak. I have been pretty much sleeping on and off ever since.

It is pouring rain and thunderstorms, and the dentist is this morning. Let’s see if I can do it.

Cheers!

In Pain and Grouchy.

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All right. I’m done. I am bloody well ready to shut it down and move to the furthest edges of where Sephora delivers. I’m over this friendship business. It’s overrated.

I had a person ask me to join a group she started, because it was a mutual interest, so I did. The members seem to devote a lot of time to this group, and it happened around the time all my major nonsense started this year. I haven’t posted much to the group, nor to this person much, except to explain my situation. She deleted me today, as a friend! (Yes, I have spyware) Now, I don’t hate her or think she’s a bitch or anything, but I think it’s pretty much a pattern of how abled-disabled friendships go. Tons of assumptions are made, three months go by, well – they must be feeling better by now! They must not be interested. Where do three months go? It took me four months to see my regular pain management doctor! So much can be solved by talking. But when you have an invisible illness, who has the spoons? How hard is it to check Facebook, really? You’d be surprised.

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This is a pretty nice picture. Notice my top from Old Navy with the Zebra print. This makeup took over three hours to accomplish. I had to keep lying down to quell the nausea and pressure in my head, increasing my headache. I also was dealing with a broken crown because my medical examination last week was so painful, I grit my teeth in pain, and… well. We do need to wait until after my Botox treatment shots tomorrow, because I get lidocaine and Botox in my jaw and it helps a lot. If I need to sit with my mouth open while they tinker, it just makes sense. I mean, my jaw aches, but it’s only really bad when I bite wrong. So, we don’t need to wait, but it makes sense. In this photo I have that headache, rapping the back of my head, jaw pain, my hands are achy from fumbling for stuff, shoulders are cranky, they don’t like holding cameras, and my abdomen/hip on the right side is doing that “you really could lie down you know, sure it bunches up your neck, but so what?” But I’m still trying to look cute and show off my makeup, because this is the Internet. Everyone has a perfect life here!

Why do I do it then? Because otherwise I just lie here bored. Some days that’s all I can do. Some days I need to get my family in order. Things take a lot longer than before. My memory is bad. It must be the pain. My neck hurts so much. I can barely keep track of what I’m doing.

I have been buying tons of makeup again. Partly because I can’t keep track of what I have. I was half-joking with my husband, saying makeup is all I have. I started listing all the things that were no longer available to me:

  • Sex
  • Watching complicated television
  • Milkshakes
  • Travel
  • Dancing
  • Beaches
  • Carbonated Beverages

I went on for a while until I felt good and sorry and it was no longer funny in the slightest.

However, I have discovered a few things that I can participate in:

  • Iced tea with aspartame (I do not care, this is keeping me alive right now)
  • Watching comedians on various corners of the cable service
  • Wearing my zebra outfits
  • Lovely Brand caramels, made with condensed milk – which isn’t FODMAP friendly, but if I only have a couple I do okay. The Sea salt ones are so good!

 

This cheered me immensely.

My son turned 13 yesterday, and my husband made a FODMAP friendly cake! Isn’t he the sweetest? Chocolate, which is the boy’s favourite. The girl likes vanilla. I can’t believe I’m Mom to two teenagers. That’s so weird. I’m just a teen myself! Well, it seems that way, in my head.

Speaking of my head, I spend most of my day in it. I deliberately stay away from people and try to stay busy. I’m always doing something. I have two blogs. My kids require as much support as I can give them, my husband needs loose ends tied up, and I need to maintain my health. All from my bed! I can get pretty foul tempered when I’m in pain. I want to save whatever good mood I can muster for those to whom I’m closest. I want to be as unstressed as possible, and that means releasing myself from as many entanglements as I could.

I even told my MOTHER I needed some space right now.

I see you people hanging on there. I appreciate the hell out of you.

Don’t think I don’t see the irony of me saying “people should really talk more” and me just dropping out of society, but if you were in my head you would totally understand. I feel like there’s a gremlin on my shoulder chopping at the back of my head. My neck is stiff, it hurts to turn right or left or look up. My jaw is stiff and sore. It’s tough to think and comprehend what people are saying. It’s quite embarrassing. It gets worse as the day goes along. It feels like I was put in a blender. My brain is spinning. It’s difficult to concentrate. I’ve been working on this post for two hours now. I’ve lost parts of it. Doing anything is like this. This is not what I am like. I am efficient and organized. It’s a nightmare for me.

I don’t remember if I said this, but the doctor said he was referring me to someone who was going to examine my neck/head and potentially do a block. I think that’s what they thought, but maybe an MRI first. Or an x-ray. Would be good. I don’t want them poking around without any idea of where anything is. I mean, even the dentist takes x-rays.

My face is killing me. I only need to make it to tomorrow.

Love to you, Zebra pals! 😘

 

…as a Kite! 😄

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The pain has not subsided in any way. I’m just lying here, taking my breakthrough meds as prescribed, and trying to hold off going to the hospital.

To answer proactively,

Why I don’t want to go to hospital:

  • It will greatly upset my kids, who are currently struggling with anxiety.
  • I do not think there is anything they can do for me there that I can’t do for me here.
  • If it is, in fact, a cyst, I am not having surgery, they will just send me home anyway.
  • Anything that is wrong with me, actually, they will drug me up and send me home.
  • I have more suitable (not better, granted) drugs here, until I really can’t take the pain.
  • I will be more comfortable here no matter what.

So, this is why I’m trying to hold out no matter what. I’ve been through this before, and it isn’t fun, but it’s definitely surviveable.

My husband is working from home today, so at least I feel protected. That’s not the right word… 🤔

Enjoy your day, Zebra friends! 😘

The Daily Grind

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I was looking for baby photos of my daughter to post on Facebook to embarrass her, when I came across this one.  My daughter took this of me taking a Selfie,  because she thought my hands were hilarious. They do look pretty EDS-y. Is that a thing? You can see my index finger clearly showing swan neck deformity. This was taken October of 2015.

I found the makeup palette I was looking for. It was in the drawer beside my bed. I don’t often wear my glasses at home, so I sometimes don’t see things in front of my face. I swear I looked there, though! With my glasses and everything! I also promised my husband I would call and confirm his appointment with a sleep specialist. Promptly forgot. Sigh. He remembered and did it, though.

My son didn’t make it to school all week due to anxiety. I feel for him. Grade 7 is horrible. Aspergers is horrible on the downslope. On the upside, it can be beautiful. I kind of want to blog about this journey, but three is too many. Beauty will have to go. Not ready yet.

I’m scheduled to see my friend tonight and she sent me an email saying she’s ready, but she understands if I can’t make it. Which means she loves me, but she loves her bed, too. 😁 I completely get it! I asked if she would mind coming over and ordering in. She gets to see my family, always a treat. But it’s a quiet night. I hope it’s okay, because I don’t know if I can go out. I’m getting frightened of going out without my husband. Part because of ice, and part because of pain. My back is so sore, still. I can’t even really sit up very well. My abdomen, holy moly! I am having the worst cramps. Everything from under my breasts to my pelvis is just one knot of pain. I don’t even know how I’m typing right now. Distraction.

I wanted a bath last night, but my husband was working from home and just sent me to bed at 1:00. Once again, woke up at 6:30. But this time my stupid cable box wasn’t working. He wasn’t home yet, as he took our son to physio, but he worked on the TV thing when he got home. We need a technician now. It’s just my room, too. Boo.

Of course, because I slept so long yesterday I missed a dose of medications, and that can’t be good. I’m probably long past it now. I still want to curl up and sleep. I know if I take extra medication, it will knock me out anyway.

I’d better do something, or I’m going to eat all the cookies in the world…Likely check my social media then nap again.

Stay bendy, my zebras!

 

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? 😂 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.  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! 😘