The Next Day

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My husband evaluated the situation yesterday, I just love his logical Self! ( please allow me this apology. My predictive text is really obnoxious, and I can’t fight with it today. I simply cannot. I am so sorry for the weird capitals, or not, or apostrophes they insist upon)

So, my husband and I went over what I had taken, what I had, and came up with a good mix. Within about 20 minutes I was much more comfortable, and even a bit loopy from finally being out of pain. (Which is different from being stoned, because it all really hadn’t kicked in yet.) I was still well within my range of my prescriptions, which is awesome. There is this magic cream the doc prescribed that really numbs things up. It’s lovely, and I always forget about it.

After the lovely medicine started to kick in, the most embarrssing thing happened! I picked up my tablet and started to read, as I often bookmark things for myself this way, and the blog I was reading… I thought ‘This poor woman!’ Oh, Lord! It was my own blog I’d just published! I did notice after a couple of sentences. I  need to reign in the pity party. 😆

So, my bath was gorgeous.  Fantastic. I loathe getting out of the bath, as I am always so cold. But. I survived. Hair washed. Slept amazingly well. It was tough, but I fought to stay awake yesterday, so there would be a full night last night.

This morning I received a call for my MRI. It is on Thursday.

I am still very tired today. I’m cold. Sleepy. My back is intensely sore. I think I should focus on rehydrating myself. Staying warm.

I thought I’d play with makeup today, but maybe later. Or tomorrow…

Priority has to be maintaining good function first.

It is amazing to me how dumb I have been, distracting myself from all the stupid important stuff going on with my body, because it’s scary and intense with all of the unimportant minutiae because it’s easier and self-perpetuating. It’s time to human up.

Stay snuggly, my friends!

Revelations

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I’ve written so many editions of this blog where I have been feeling low, it is great to be feeling good for a change.

I have settled into a comfortable routine. I am up at 6 am, available for the kids as they get ready for school. I putter around until around noon. I am in bed, but I fold the blankets and put them aside so I can move around. I lie down as I need to, sometimes it’s ten minutes here and there, sometimes it’s a whole hour at a time. Between six and nine, I am definitely available for my kids, and they talk to me a lot! Once they are into their day, I am more relaxed.

After my afternoon medicine, I nap. Sometimes it’s right until 6:00 pm.  I am around for my family from when I get up (today it was 4:30) until the kids go to bed, usually by 9:00 (their choice) and then my husband and I hang out until the Sleep Monster comes for us. 10?

So, that takes care of getting enough sleep.

Other things I am focusing on:

  • Getting proper nutrition
  • I’ve been making sure I eat good food and don’t worry about weight gain
  •  Focusing on positive shows and experiences
  • Because I am stuck watching tv so much, I focus on more positive shows and not negative ones
  • Lowering stress
  • I have found some good apps to help me keep track of things, and I’m learning not to overload myself
  • Enjoying hobbies
  • Playing with makeup and crappy crafts are more important than they appear. They really help me relax. Organizing things is my kind of fun. 

So far, the results have been good. I am no longer constantly berating myself for not accomplishing more, and I’m having fun!  I still have body pain, yet it is discernable from my mood. In other words, I can be happy and in a good mood and have an aching back, and it’s been a long time since I could say that.

So Grouchy

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I have been thinking about posting all week, I have just been so grouchy, I didn’t think it wise. Everything seems to be irritating me. I don’t like this at all. Isn’t it just like me to be irritated about being irritated? 😆

My head is sore. It hurts almost constantly. It’s bearable when I am lying down. My neck has this sharp kink where it feels as if something is sharply out of place.

I have about three to maybe four hours in the morning, where, if I’m very careful, I can sit up. I need to lie down periodically, but I can get a few things done. I can’t screw around, and when it’s time to quit, if I delay I may have to rest tomorrow, too. It’s tough, because I’m easily distracted and really clumsy.

And oh, so tired. I’m thinking it was the three hour appointment, but we are ten days past that now, I should have my strength back. But I can’t accomplish anything much.

I’m reorganizing everything I can get my hands on, which does tell how stressed I actually am.

I am trying to learn to relax, although I have no experience in it. Doctors orders. I’m also trying to watch positive shows, humour, and be generally happy. It’s helping. I mean, I know I am irrationally irritable. I’m trying to keep it to myself and not inflict it on anyone.

This pain. I do occasionally have better times. Resting is my lesson.

On the plus side, I really enjoyed Friends and Arrested Development. I was working so much when they were on, I didn’t see them. I’m not certain what’s next… Archer?

Hope you had a Happy Valentine’s day!

Great News!

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My appointment with the EDS Clinic has been moved to Thursday! Yes! This Thursday! I am so excited I can barely breathe! Prayer works! Or being on the cancellation list! Or being charming, which the administrator has mentioned twice as being a factor in choosing me and my husband when cancellations come up. Which is very flattering, because I have been feeling like a gaping asshole lately for being so selfish and me-centric. However, I have only had enough spoons to get me through.

I have been trying to remain more positive lately, as one person suggested I not dwell on the past so much. I think that’s good advice. I don’t think that I was so much, but in evaluating, I am certain I wasn’t looking too far into the future. What do I have, really, to look forward to, personally? Let’s say I live another 30 years. That takes me to 77. Let’s hope my pain remains at this level. Oh, Lord, that’s depressing as it is. My grandmother is turning 97 this year, so 77 might be a bit wishful. Ha ha.

Of course, seeing my kids grow, my husband grow in his career. Die from stress, that will all be fun, too. (Joke) It’s fraught, but there are tons of things they teach me every day. My son takes physical therapy, and they are talking of sending him, ironically, to the EDS Clinic at Sick Kids. He hasn’t been diagnosed, but a diagnosis wouldn’t surprise me. He’s 13 1/2. My daughter has Aspergers, and the anxiety component is so challenging. She is so tough. So is my boy, actually. I spend a ton of time worrying about them, and deciphering whether my husband is actually trying to insult me, or if he’s just being autistic. He has autism as well, we just found out when daughter was diagnosed, only because they are exactly alike. I know he’s never trying to insult me, he just says things how he feels them and it sometimes sounds funny in words.

I’m rambling, sorry. Excited. Tired.

Once we find out what they can do for us, the EDS Clinic, I mean, then we can branch out and fill in the gaps.

Good thing we kept the wheelchair from my appointments, whenever those were. 😜

At The Bottom, Looking Up.

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I’m trying to stay positive. I want to be positive. But my body is revolting (joke). I have never been in this much pain before. If you remember, I haven’t had any Botox injections in my body since last June. This was a treatment I had been having for 11 years, every 10 weeks. I have also only had one migraine Botox treatment since then, October. So no relief from the neck and head pain or migraine pain since then.

My sleep is terribly fractured. Pain keeps waking me up. My current doctors don’t feel qualified to prescribe what they feel I need to help with this. I did sleep for 24 hours Friday to Saturday, so that was amazing. I did have to take a bunch of medication, still within my prescribed plan, to get there.

There’s a bunch more, but it’s a bore. The meniscus in my knees have gone. I would love to watch me walk as I dash to the washroom, because they are popping in and out like crazy. It must be hilarious.

The point is that I will be incredibly fresh when I get to the EDS Clinic next month. I will have had no treatment since October, just my meds.

I’m like a goldfish right now. I try to keep thoughts in my head, watch upbeat shows, save my energy for my husband and kids. I cry much of the time. I don’t even realize it, but the tears are there. Pain. Exhaustion. I don’t want to sleep through life! My kids seem to be doing quite all right for the moment! It’s really new, so I am crossing my fingers.

I play with makeup a lot. Although it will take me 3 to 4 hours what should really take 45 minutes. Distracted by tv, Looking for stuff, what was I doing?, oh yeah, that brush…

One of the scariest things is that I’m getting pins and needles down my arms. I can’t feel my fingers that much anymore, my fingers are all cracking and cramping. They become more and more useless. I have to figure it out, but I never have the strength to. Or I never remember when I’m at that moment. Grrr! I even keep a notpad to write things down, but I haven’t captured it yet.

My husband is being wonderful, as usual. He has been baking gluten-free brownies every week so I can have them with my evening medicine. My gynecologist put me back on Visanne so maybe we can stop some of the cramping. Yay! Acne and weight gain! I’ve put on 10 and taken off 2. I had been hitting the chocolate pretty hard over Christmas.

Anyway, I’m getting pretty tired. Hugs to everyone going through same or similar. When I don’t have energy for makeup, I have been making some crappy crafts by covering old containers with duck tape. The decorative stuff they have out now.  I will try and take a photo of some projects if I can. They aren’t gorgeous, but they keep my hands moving. It’s something to focus on, other than what’s hurting now. It’s good.

Just Breathe

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Oh, well, things are back to normal. Life is back to kick me in the ass and remind me I am sub-human, in case I had forgotten. One of the latest games is to obnoxiously correct my grammar as I am trying to form a sentence. I’m just pleased if I can communicate an idea, never mind if I remembered it was try to instead of try and. Maybe people are thrilled they can bulldoze me for the first time. Worse,  however, is I can still hear that horrified ‘oh my God’ when referred to my size in the conversation of last week. I mean, I’m 5’8″. When I carry extra weight, I look huge.

So, I’m finding being judged at every turn very tiring. Everyone has something to say. There are actually people in this world who believe you draw to you everything that happens. Therefore, if I am suffering pain, I must be a bad person. Genetic? Bad in a past life. I’m fat? Then using a wheelchair because I’m lazy, no other reason. Now that I’m close to average size, I’m treated so much better by doctors and strangers. My friends are gone, though. That often with weight loss, I’ve heard.

I’ve been suffering a lot of knee pain. It keeps me awake at night. It’s awful. I hope it goes away. I have been bracing like crazy at night. My shoulders are really bothering me. I’m not certain how I could brace them, but I’m resting and keeping warm.

So many doctors have turned me down! I can’t get a specialist! They keep saying to wait until the EDS Clinic sees me. I’m so glad we are 5 weeks away. My clinic is no longer doing Botox. Great. Just found out. My head isn’t too bad, knock wood! I think many are not comfortable without the specialist support. So we wait and take things easy.

My days have nice flow. Wake at 6. Breakfast, coffee, Instagram. See kids off to school. Deal with emergencies. Play with makeup.  Lunch. Crafts for an hour. Nap. Tidy, hang out, organize. Time with husband, night meds and snack. Sleep, painsomnia, sleep.

God, my face hurts. 😣

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.