Resolutions

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One of the resolutions I made for this new year is to be more disciplined in my blogging. I have been very lacksidasical lately, and I don’t like that. Otherwise, my resolutions are month by month, as I did last year. I have most of them laid out, but need to get back to it. January is supposed to be for rest and relaxation, so maybe I’m doing just fine. February is when I crack the whip.

This week was rife with doctor appointments. Last Sunday I met with my cannabis doctor. This was a video call. It was amazing. I was able to talk without crying. He was so nice! He told me I shouldn’t skip any doses and not to short myself. I don’t like the feeling of being loopy, but I’m in so much pain right now, I can’t argue. I have come to some realization about why I’m so leery of being out of control or out of it on medication, but it’s family stuff, and I don’t feel comfortable sharing. However, I  should be able to work through it better now that I know I have a hang-up.

Monday, I had two appointments next door to each other, so I saw my gynecologist first, no big deal. Just a check in to see how I was. Then we had some time so my husband wheeled me around a bit, and we found a Manchu Wok! I haven’t had mall food in years, so I had some… so yummy! Even though I was steadily eating pain pills, by the time we got to the sleep specialist, I was in tears from pain. I got out my story, but she can’t really give me anything but what she has, and she says they are for ‘normal’ people. So I need another doctor. And because I’m crying, I need a psychiatrist. No, I’m in pain. Trust.

But, after that, I decide I’m getting my flu shot because we were there. So we go, but I didn’t count on having to wait under the speakers blasting horrendous music for 45 minutes. Why do they make it so loud? And if it’s so loud, why is it so bad? Then two ladies notice my distress, they were those weird ladies, too. The ones that are really big on top, but have really skinny legs and bums? And they always have feathered hair, and they wear big sweaters that never cover said tiny bums? Anyway, they noticed my distress, so they come over and start singing loudly and tap their feet right beside me and crack up. Lovely. I loathe people.

The next couple of days I just flaked. I did some organizing around here, because it really is one of my favorite things to do. Played with some makeup. Found my contact lenses. I don’t like being loopy, but I sure am in a better mood!

So, Friday. I call my Grandmother. Light of my life. She’s my world. Everything is good.

Then I decide to call an old friend I had been neglecting. Mistake. He starts going on this rant about how I need to find better doctors and I’m too young to be lying in bed all day. I just need to find the doctor who will cure me. I take too many pills. Blah blah. Then: All teenagers think their parents are stupid ergo mine think we are stupid. No amount of conversation would help. Because this wasn’t a conversation, it was a rant. So I started crying and said goodbye. That’s another thing, I’m not going to hide my emotions anymore. Why bother? If I end up just me and my family anyways, people need to know if I am hurt, offended or amused.

My grand total for last year was 4 visitors, including my sister and brother in law, and two social outings. If you count my two day conference as two, then it is three social outings. Not that I didn’t try much harder. I had three more engagements where I was … ditched? Anyway, no worries. Let us see what this year brings.

Inconvenient Sleep Habits

In the first place, my body is being a big jerk. It won’t let giphy15me sleep at any time there is another person in this house asleep.  On top of that, I’ve caught my daughter’s cold. Which isn’t a horrible one, it’s just that I’m a terrible wimp when it comes to having a sore throat. I find that pretty funny, actually.  I am also suffering with yeast infections for some reason. I am having incredibly awful pelvic and back pain. If it’s not gone by morning, I’m actually going in somewhere. It’s incredible. I don’t know what is causing this. I was having terrible problems for almost eight months about two years ago. I had fungal infections all along the inside of my thighs and my under my breasts. My pharmacist recommended cranberry tablets. It was funny how I discovered this. My husband is in charge of all my medicine. He had asked the pharmacist about this problem and received this answer. I had been taking them for a while before I noticed. When I asked about them, I received an explanation, which I denounced as hogwash. Husband asked if the thrush had cleared up, to which I had to admit, yes it had. Unfortunately, I have been not so great at taking my pills, as I sleep at odd hours, missing some. I need to pay attention, get back on track.

Although, that is difficult when you’re curled in a ball whimpering.

I’ve found that around midnight, I usually start crying. It doesn’t last long, usually less than 30 seconds. I’ve never gone longer than 3 minutes. But I have had a few minutes to myself to be scared and break down before I put my face back on. The everything will be ok, face. Or maybe I sob out of self pity. I have some of those, too, I’m certain.

I can’t deny I’m stressed. My mother needs support and I can’t offer it to her. I’m likely the only one, besides her sister, she has. My husband is too overworked to give me the support I need. I ask for things, 10 minutes of his time, and it’s to the point where this is becoming problematic to schedule. Tonight, I wanted help with two rather unimportant things, I waited until bedtime at 9:00, but almost didn’t accomplish them because of all the distractions etc. He keeps telling me he answered me when he didn’t. It’s so frustrating. I know it’s not my memory, either. Sigh. 11:00. We need a better strategy.

Trouble with midnight painsomnia is I can’t vape or watch TV 🤣. Our sofa is not a place to banish people to. I can’t make it downstairs on my own, either.

I’ve been cleaning out drawers. Nesting. It’s my favourite thing to do. It’s been hard work, but I always feel better afterward.

Can I ask a question of my friends who are on the Autism Spectrum? How offensive is the term Aspie? Or Aspy? Here’s why: I have so much to talk about with my family, with three of them being on the spectrum. Daughter, diagnosed Aspergers, husband not diagnosed, but clearly on the spectrum, and my son will be diagnosed when he returns to school. I have so much to share about parenting and what living with these folks is like, I was thinking of…ugh, a third blog. Ugh. I know. But the name Three Aspies and a Zebra sounded good to me, I just didn’t want to be offensive. Open to any good name suggestions! Speaking to the blog, for example, my kids have no idea when people are joking. My daughter went to the CNE, I asked her to buy me some donuts, which are off my FODMAP plan. She’s 15, btw. She started crying because she didn’t know if I was kidding, and if she should really do it because they might hurt me, and she didn’t want to be responsible for me getting sick. She’s so sweet! 💜

My husband is snoring sweetly beside me. I want to whack him with a pillow. Nah, I know that if the kids stir or if I call out, he will be up. His beloved aquarium was acting up earlier, so he’s annoyed. He gives time to the kids, and I can’t begrudge my own kids and his source of income, as he was finishing a course for work, too.

I just can’t stop needing what I need or feeling what I feel. Here come the tears. Must be midnight. Exactly.

Ah, going to go find some cat memes. I always get melancholy when I’m sick. Boo.

💜

 

Valentine’s Day!

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Even though I was feeling crappy last night, I got a whole bunch of parcels together that I meant to send out weeks ago. My husband put them in the mail this morning. Saint! I just adore this man. He is so good to me. He even ran an errand for my Mother, which kind of started this whole thing of mailing stuff out, because my Mom is having a skin crisis, and can’t get out for a couple of weeks because of my Dad’s caregivers’ schedule.

I love Valentine’s day. I love everything heart-shaped, symbolic heart – not actual heart, of course! I’m quite a romantic. I adore chocolate and the whole idea. I also respect those who do not celebrate, who may not be enthusiastic about the holiday, but I was not expecting to find an anti-Valentine’s rant about it being a plain commercialized money grab and we should be loving everyone every day as my first Facebook greeting this morning. In other words, it’s still not a safe place.

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I’m kind of embarrassed having feelings all over the place the past few days, but I can’t go on pretending I don’t. I’m feeling slightly better today, but I’m still raw. I need some bubble wrap for a while.

Remember how I mentioned my husband had an eye infection? It was really bad and the doctors have no idea how we don’t have it? I woke up this morning with my eye all red and pus-filled. I am going to take a Benedryl, see if that helps. It may be from crying. It may be because I let down my immune system enough that the infection came through. I was poking at it enough last night, I have no idea. It’s very sore and the light hurts.

My head is hurting, my neck is sore. I don’t feel quite so bad anymore. I’m healing. Rip and heal, rip and heal. That’s how we get stronger, right?

Stay beautiful, my Valentine Zebras! 😘

Dark Days

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I have never felt so dark as I have the past few days. The pain just feels never-ending. I don’t feel like there are any bright spots anymore. The tears keep falling. I know this is a temporary state, but damn, it’s no fun to go through.

I try so hard to be stoic all the time. I try to pretend I have this. It’s no problem for me to lie in bed all day every day and play on the computer. But it’s a huge problem. People don’t realize, I think, that when everyone on Facebook decides to have a shitty day, I don’t get to go outside and find other people to talk to. I’m stuck with what I’ve got.

I’m trying not to turn this into an ‘everybody is being mean to me’ because that is certainly not the case. I know I’m very sensitive right now, probably not safe for human consumption, and feeling very left behind, and I have no way of communicating this without feeling like I’m whining, because I’m in too much pain to do anything but whine.

I feel like my soul is being slowly ripped from my body. I just want this to end.

I was thinking yesterday, I would love to just have a day off. To just hand over my pain for a day. But whom would I burden with that? Oh, you know my first choice. Someone who needs to make decisions on health care reform. But is there someone else who needs to know what this is like? I couldn’t even do this to my ex-husband. I don’t particularly hate him, but sometimes, you know, I think he was kind of clueless.

My good friend is chronically ill. She’s lovely. She always says this thing, though, that interests me. When she’s talking about her pain she says, “but it’s nothing as bad as yours.”. She’s not the only one who does this. It’s so interesting to me because to me, pain is so individual. It may be that I’m a big wimp 😀. It’s almost not how much pain hurts, but how much it disables you.

My husband just interrupted me for a conversation. He is home today because he had a sleep study done last night. When he originally booked it, he thought it was the Family Day long weekend. I’m vaping as I blog, so I’m feeling better as I go. I’ve spilled my guts to him, and we’ve decided to cancel my dentist appointment for this afternoon. They are so darn good to me. They allow me to cancel and fit me in when they can. The weather is terrible. Snow and ice. I can’t get over the snow banks on a good day, but the ice? We have to try again. I really need a new bite guard.

So, my husband thinks I should medicate myself as much as I am allowed. Then take a warm bath. He will ensure I’m okay, and I don’t stop breathing. I mean, I’m not taking the same things as Michelle McNamara, but Patton Oswalt pulls at the heartstrings, ya know?

Our neighbour’s young daughter knocked on the door this morning to say ‘hi’. She informed my husband her father was at work and her mummy was at work. My husband told her he was at work (liar!) because sometimes they let him work from home, and our children were at school because it was Monday. Her eyes got big and expression was surprised. “Monday!” She repeated. He heard her grandmother start to frantically start to call for her two doors down, “Grandma, I’m visiting my friends!” She called back as she scrambled down the stairs.

Husband came up and began to tell me the story. We heard frantic banging against the door, as if someone were throwing their whole body against it. “Goodbye!” She called as he opened the door, “Grandma’s taking me to school!” As she flew down the steps and down the walk.

He also reminded me that it’s February and Valentine’s day is coming up. This may explain the rash of sudden expressions of love (or whatever) and some of the grouchiness. I can totally get that! Whether it’s being just sick of winter in general, or hating Valentine’s day, whether in or out of a relationship, February is a tough month.

Sometimes it is straight out hostility. It’s so funny, too, what people perceive about your life. I know I’ve lost at least one close friendship over jealousy of my relationship. It is incredibly sad, because I just figured it out recently. If this woman could only see my life now! I guess it seems great on paper, doting husband, two kids (who happen to be awesome), good drugs, lie around all day, play with makeup… but where does the horrible isolation fit in? The feeling everything you say is completely stupid and pitied? The aching in every part of your body every day, including your pubic bone? Doctors constantly questioning your mental state…are you depressed? You seem depressed. Of course I’m depressed you fucking nitwit! But this is temporary. This dark mood. They come and go.

Stay in the light, my mutant collagen cousins! 😘

So.Many.Needles.

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My Botox needles, ready to go, taken a couple of years ago.

One of the things I do to help manage my pain is get Botox injections every ten weeks. Just like for migraines, which I am also treated for with Botox, at the same time.

So this morning I had to drag my ass out of bed. I was not amused. 😁 I was really sore! I wanted to have a quick wash. In fact, I’d wanted a bath last night, but that just was not happening. I was too sore. I tried to move today, and my back spasmed, so I asked my son for a warm cloth to wash up with so at least I won’t be smelly, and I get the third degree! Why? Does it have to be warm? Why? Ugh! He’s 12, it’s not like he’s a baby.

After I convinced him of what I needed and managed to dress, I was able to hobble downstairs. Must have been so funny to see! Me hanging on to husband and kicking my feet out trying to loosen my knees up.

We got to the hospital and our appointment, and there is a nurse? Social services worker? I don’t know who she is, but ugh. She’s not kind. She calls you to your appointment, then disappears from sight. She doesn’t even sort of wait for you. Then she waves you to the treatment room. Hm. Onward.

The doctor comes in with two new doctors who are taking extensive extra training in Pain Management. We talk about how fascinating I am to have Ehlers-Danlos Syndrome, diagnosed late, even though he had been seeing me ten years. Hm. Hm. Botox injections are tricky things, only work occasionally, hm.

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The aftermath of needles in the forehead

Hm. Lucky me. And I am very lucky.

Then we start sticking needles in my head. As you can see from the photo, he didn’t clean me up before sending me home.

After the front, we move to the back, and he injects some near my jaw, I think,  but truly I just spaced out for a while.

I know we then did some near my neck and shoulder,  being careful around my throat so I don’t stop breathing. I hear that can be bad. We continued to my lower back focusing on the lower spine area, and the top of the buttocks.

At this point I have to roll over. Never an easy task in a gown on a narrow slab of table. Now imagine you want to preserve some dignity.

Here is also where my doctor starts to show off. He says to PMDIW (Pain Management Doctors in Waiting) “she has an entrapped nerve and is very sensitive!” As he touches my pelvis, the right lower quadrant, and I scream. The PMDIW look horrified and blanche under their South Asian complexions. They look like they want to bolt. I don’t blame them. Doctor moves on. He terrorizes my pubic bone. My face contorts in a silent scream. Husband grabs my hand. The doctor injects me as I sob. I tell him to keep going. Husband asks if I want a break, but I don’t. It will just be longer, then. The doctor starts on my right inner thigh. He pushes a bit. I wince. He moves over. I scream. I quickly slam my hand over my mouth, conscious of where I am,  but it hurts so damn much. I’m just sobbing now as he finishes the left leg, worn out from the pain, spacey, tired.

The doctors all leave. Husband helps me get dressed. That not a nurse or a social worker comes in and asks if I’m okay but is gone before I can answer. I can tell she didn’t care anyway. I’m known as the screamer. They tease me that I’m bad for business.

One of the PMDIW wants an appointment with me next week to talk about how sensitive I am in areas. It doesn’t seem normal not to be able to touch someone in an area, like my inner thigh or my abdomen. So maybe we can do something? I can hope!

So, I’m sitting here semi-bingeing on sweets, while my dear husband naps beside me. It’s bliss! 😍