Stunned.

giphy3

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. ย 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!

๐Ÿ’œ

In Pain and Grouchy.

giphy11

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.

20170611_183303

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! ๐Ÿ˜˜

 

Not so Bad?

I didn’t really sleep last night, but lay curled in a ball on my side. Aside from some urgent puking at around 3 am, things seemed to go okay. Husband leaped out of bed at the clank of the bucket and grabbed the Gravol. I’m still nauseated as hell, and I have the bed spins when I lay on my back.

Husband whispered he would take me to the ER this morning as soon as he got everything settled, but of course I’m feeling better now, although my stomach is still lurching. I wonder if it’s just time or if it was a migraine. If it’s bad again, I’m going. It seems to be worse if anything touches the back of my head, or if I’m not laying on my side.

I guess we shall see what the next few hours brings.

 

On another note, I’ve accepted that I’m too sensitive for social media right now. Really, I’m too sensitive for more than one person at a time right now. I’m not going to go all dramatic and post some goodbye notices, but I’m just acknowledging that it’s not you, it’s me. And that’s okay.

Facebook: where everyone is sure you’re an asshole, and they can’t wait to prove it to you.

Okay, popped some Benadryl. Pray for me.

I need this to be done. My daughter has a dance performance tonight, it’s going to run long and late. My husband should go, and I need to be here with our 13-year-old. He won’t last (autism).

My eyes aren’t right. They aren’t focusing. It’s like it’s foggy, or my glasses are steamed up a bit. Or my eye is lagging. My neck is really sore. I’m so worn out. Today will be quiet. I hope it helps.

Stay flexible my Zebra pals. And hang on, here go the bed spins again! ๐Ÿ˜„

 

Head Pain

giphy7

Aaagh My head! My head and neck are really sore. I’m just in so much pain. The back of my head really hurts. I fractured my skull in 1992 after a fall down some stairs. Like, a flight and a half. I saw my boots silhouetted against the sky. And I remember nothing. I woke up 10? Minutes later. I was taken to the hospital when fluid was leaking out of my ears later that day. I had some bladder incontinence for a day, but then was better and they sent me home, no follow up. But that’s where it hurts. ย I’m also quite nauseated.

I rubbed Voltaren on my neck last night. Oh! Heaven! ๐Ÿ˜! My neck is so much better. It may be why my head hurts, as I tend to have migraines when I relax. I want to be put in a harness and hanged by my neck so I can straighten everything out. My husband suggested he crack me like a whip to put everything into place!

I’m in a happy mood, my makeup guru drops a makeup collection today! I’m so excited! My friend made my week the other day. She went blonde, and said I had inspired her, because I have so much fun on my Instagram and beauty blog with different lipsticks and makeup. Wait until she sees my new lashes! Also, she’s quite a beauty. I’m flattered to have inspired someone so fabulous!

I have an appointment with my therapist today, and I’m slightly displeased. Mildly miffed? They have a 48 hour cancellation policy, as one does, and I understand it’s to keep those reluctant or anxious from canceling at the last minute every time. However, I don’t know when I’m going to be hit with blinding pain every time. This is not a therapy avoidance tactic, and although my therapist is kind enough to meet with me by phone, I am not exactly getting my $200 worth that I am paying out of pocket. Anyway.

I’m in tears from pain now. Still happy, though. You zebras know what I mean! Just vaped. Lol! ๐Ÿ˜‚

Have a good day Zebra friends!

PS. To whom it may concern: I didn’t see any owls on my Facebook. If you go to my WordPress page, the icons at the top? Should take you directly to me. My avatar shows half my face. Also on my WordPress site is a contact form to email me so you can send me your name, I can look out for you!

My head is mushy and um… sorry. I am intelligent.

Happily Dragging my Behind

I have been so tired the past couple of days, but no rest for the giphywicked! I ended up sleeping most of Thursday afternoon. By the time I settled in, it was close to 1:00 and my husband woke me when he and the boy returned from physical therapy at 7:00. It felt so good! I had no trouble sleeping except I was excited for makeup the next day.

I’m finding this problem with sleeping pills. Either they are not strong enough, where they don’t help me sleep, then the next one up is good, but I need a nap the next day, and I can fall asleep on a dime. There is nothing in between.

My daughter wanted to watch some horror movies, but not really scary ones, just scary enough they were interesting, and not too scary she would have nightmares. So we watched one called #Horror, also known as Hashtag Horror or Slashtag about a group of 12 year old girls who bully each other and then start dying. It’s very strange. Stars Natasha Lyonne and Chloe Sevigny.

We then watched The Girls in the Photographs. This was not bad. Not great. Another weird one. Creepy. Kal Penn is a photographer, character is based on Terry Richardson. Yes I read IMDB! ๐Ÿ˜„

By that time, I’d had enough peopling, so I decided to do my wp-1489850277865.jpgnails for the first time in years! I found it surprisingly easy. Even though my hands were so very stiff. I had to move them into position for the photo! ๐Ÿ˜ƒ I love having painted nails. They give me a little thrill every time I look at them. It makes me smile. I have found a couple of brands that do not smell to odoriferous, so I stick to those, mostly. The more you keep them out of hot water, the better the polish stays, redo your top coat every second day or so, and basecoat are my tips to make your polish last. And don’t forget to lightly go over the end of the nail with your topcoat! It’s called ‘capping the end’ and it helps prevent wear.

I called my marijuana provider to find out when my paperwork was going to be finished so I can reorder. I’m supposed to order today, but my doctor appointment was just on Tuesday, paperwork isn’t done blah blah blah, still have shipping, blah, anyway, she said I’d get an email when it was finished.

Me: When will that be?

Rep: Soon.

Me: Are we talking hours or days?

Rep: By Monday.

Me: I need to order tomorrow.

Rep: Yeah, it’s all here, I’ll have it done by Monday.

Me: I’m going to run out!

Rep: Monday.

Lovely. I’ve never, ever been treated like that by CanniMed before. It makes me nervous when my new doctor says “vape when you need to” and my usually good distributor is shrugging. When my husband called to get receipts earlier this week they were great! I feel betrayed. I realize it isn’t that bad, but sometimes it’s not what you say, it’s how you say it. I’m dependant on these drugs to be a human being with a life. There is also the shipping delay, and having to get these items to my house. They don’t teleport.

Today I got up early, at 8:00. I’m deep conditioning my hair, I’ve vaped, had breakfast, getting ready for my bath. My daughter wants to watch another movie this afternoon, but with the house quiet, she also wants time to herself. I’m not sure what will win out.

I’m so dehydrated my lips are cracking, so I need to focus on this. In fact, I feel really unfocused. I feel like I’m behind on reading blogs, answering email, I haven’t called my mom in ages. I generally feel like I’m running to catch up. I think having the monsters home at spring break has left me a bit peopled out for a bit. I’m used to more alone time.

I’m afraid now, every time someone contacts me on Facebook messenger, they are going to try to sell me something. ๐Ÿ˜”

Have a glorious day, Zebras!

 

 

One Lovely Blog Award Nomination

wp-1487621709466.jpgWhat a wonderful way to celebrate Rare Disease Day! With a nomination for the One Lovely Blog Award! I am just so flattered!

I must thank the wonderfulย Vicki at Lady Chariot, whose blog is perpetually inspiring.

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 positiveย and get behind all of the artistry and bravery of those sharing their stories and thoughts.

 

Seven Facts About Me:

  1. I get very shy and embarrassed with delight when someone does something nice for me. I often have to step back and gather myself quietly (internally squealing with excitement) when something good happens.
  2. My hair is naturally curly . It’s very tightly spiraled, so I work with a curly hair expert to keep it manageable. I am afraid to let anyone else touch my hair now.
  3. There is a whole group of friends I have who all went through school together. We started in kindergarten together, and graduated high school together. One of my best friends joined in fourth grade, as they went to the other primary school, but we still remain in contact through Facebook. I moved away, others moved away, but we still talk!
  4. I self-diagnosed my Ehlers-Danlos Syndrome in 1995 via the show Mystery Diagnosis. It was 20 years before doctors would confirm it.
  5. I hate the sound, smell, thought, and even words peanut butter. It grosses me out. I have no idea why.
  6. I love playing word games like cryptoquotes, word puzzles, and puns.
  7. Even though my sister is 14 years, 10 days and 17 minutes younger than I am, we are often asked if we are twins. Poor thing. ๐Ÿ˜ I’m certain this is due to me being shut up in a bedroom for the past 15 years, not seeing the sun, than any of her shortcomings, but I still enjoy it.

 

My Nominees

I hate to do this, but I am out of spoons, and will need to submit this later today or tomorrow morning. I’m sorry, my friends, I’m just out of steam, and have agreed to an interview. I’ll tell you later.

Have a lovely day, my Zebras! ๐Ÿ˜˜

Musings

zkh08mjr2cmhs

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˜˜