Dizziness

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I am so freaking dizzy! I can’t close my eyes anymore, I just can’t. I should be sleeping.

I fell in the bath today. I was crouching to get in, and I saw blackness, then splash! And then my back and shoulder on the left side started hurting. Which is annoying, because my back was doing pretty all right, considering I should have my shots tomorrow, Tuesday, if this is Monday, already. It’s 2:30 am.

I actually feel as if I am getting a period. This is weird. I have a Mirena, have had no problems, just treated for a yeast infection, have incredibly sore boobs, cramps, sore back, and twinges. Definitely not pregnant. I guess I have to trek to the doc. I wonder if weight loss has something to do with it. I’ve never used Mirena at this weight. Does it need time to adjust?

This dizziness is something else. I even THINK about looking up? Makes me sick. I hate people who post photos from planes or videos of skydiving? I start shaking. I’m tearing up just thinking about it.  Or from space? I want to vomit. I don’t know how I’m going to get through tomorrow (no, wait. We decided it was today, right?) today. Someone is going to want me to look up at something…

I just tried to roll on my back facing up and I couldn’t. It makes the room spin. It’s so weird.

I was thinking again the other day… so dangerous, 😄 a couple of appointments ago I was trying to get a concept across to my mmj doctor. I was asking her about a stronger dose or another strain, although my distributor doesn’t do that, that would help me… and I couldn’t quite put my finger on the concept.

Relax.

Relax my muscles an perhaps let some of the tension in my body go. You cannot even fathom how rigid I hold my body. Even when I’m relaxing. I can’t drink, we can’t get massages, every time I do relax I get a fucking migraine, I can’t eat anything good, hot bath? How long does that last? I’m cooking to death in this room already, no heat for me. I hate cold, I snuggle up and watch comedians on Netflix. I’m still tense as fuck.

I can’t close my eyes, it makes me dizzy.

I’ve been trying for an hour to sleep.

Anyway, now I target each part of my body starting from the top or bottom, and relax each bit. It’s an exercise. Deep breathing, all that jazz.

My little corner of the universe is becoming quite becoming. I’m finding a lot of joy here. My makeup stash to my skincare stash, (PS, if you spend more than $100 on Korean skincare and masks, it is too much, and you will spend the next six years giving it to everyone who walks by. ) it’s all becoming accessible and organized and joyful. My clothes are slowly getting organized… that’s my daughter’s project, though, and she is taking forever!

Anyway, I need to try for 3 hours, and my elbow hurts! 😢

💜

Summertime and the pain is …

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My symptoms tend to alleviate somewhat in the summer. It doesn’t mean I’m cured by any means, but I find my knees don’t ache as much, nor do they pop and crack as much. My muscle aches aren’t as intense. My elbows don’t feel as brittle, my hands ache, but they don’t hurt as badly as they do in December.  My neck has been quite a bit better, with my head pain bein not as intense, although that could be the Botox injections.

I heard from the EDS clinic after we followed up. They are waiting for info from my doctor, which they requested May 9. He swears they didn’t receive it. Waiting time for the clinic is 6 months. They have wasted 2 months for me. I am so angry. My husband is handling this because I don’t think I can be nice about it.

My cannabis doctors office called to reschedule my appointment on Friday from this Thursday to tomorrow. I was upset, and I let it show in my voice, it was trembling. I said I was upset and my husband would have to call back because he has to bring me and he has to take time off work. Well, this person got all snippy with me! She exhaled sharply and told me he couldn’t book appointments for me. I protested he’d been doing it for the three years we’ve been patients. She relented “Oh, yeah, I guess he is on your file” Fine. So husband calls, and the only appointment I can get before my expiry is the one offered, and it isn’t even with my regular doctor! Now, I do have some responsibility in this, as I had to cancel my appointment because I was ill. However, we book 3 weeks before my due date (June 29) because there’s a chance I could be ill. They could only offer me the 13th. I need to be renewed before Monday the 17th. They have rescheduled the last three appointments at the last-minute, and it is infuriating. I believe they have rescheduled many more. I have rescheduled two because of severe contagious illness. This, plus the location of the building means I can’t make it to the building unless I have a certain amount of stamina. The building is on one of the busiest corners in the city. (Yonge-eg for anyone who knows Toronto). So, either 1. my husband has to drop me off at the building where there isn’t parking and there are no seats in the lobby, so I have to be dropped off and have the stamina to make it up the stairs and to the office.  2. I go to parking with my husband and walk to parking with him. 3. We rent a wheelchair (or buy) and then the parking situation becomes more realistic. 4. We take a cab to the office building, which drops us off in front, however, we have a long wait to hail a cab, I have nowhere to sit (except the floor) and the walk to the taxi stand is just at the furthest limit of my walking ability. So we will take a cab and I will suck it up. I’m so brave! 😄

I guess I’m so sick of after all that time the first doctor spent treating me like a drug seeking video game player, now they’re upset that I’m actually disabled and need assistance because of it.

Even though the pain might be less, my joints are very wobbly.

I think it’s rainy this week, which is making my head sore, which is making me kind of grumpy. I should probably stay off social media. Find something else to do.

I’ve managed to do a bunch of organization this week. I feel so much better to have lots of things handy and knowing where things are. I’ve organized notes and snacks and email and…everything! I even made lists for everything I needed to speak to my husband about. We arranged for him to come to bed at 7 on Saturday night so we can hang out together. It was great! We got so much done, I don’t think we will need to do that much chatting again for a long time! Ha ha!

I’ve been going to nap for an hour and sleeping for four to six. I imagine my body is healing. I am enjoying it. I feel stronger and stronger.

Dang this headache.

Doubt, Pain and Uncertainty

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Yesterday went slightly better for me. Strange, because we started the day with the lower THC marijuana, so I had lower pain relief, and I was hurting slightly more. I wonder if I take better care of myself on these days? Something to think about. I made sure I took in proper nutrition, and had some crackers my husband had bought over the weekend with some cheese, and I felt less tired. Hey, now! If I can time this right, perhaps I can work around the nausea and try to have some better food and thus, better energy. I’m pretty good at timing my vitamins now. One thing at a time.

I had a chance to play with a new makeup collection – the Urban Decay x Basquiat Collection – and had a blast. I didn’t make too much of a mess. I was so pleased! I played with new lights, and was happily able to take care of some personal grooming such as shaving my legs, applying a face mask, and I was going to settle down to write a few words for this blog when… okay, I fell asleep. I thought it was just going to be a small two-hour nap, just until my husband came home. It was four o’clock, after all.

Eight o’clock and chicken tortillas in my face indicated this was not to be. I was in quite a lot of pain as well. My abdomen is really bothering me, as is my neck, although it’s eased some. I’m coping. I mean, derangedly, but I’m coping. I have huge acne sores. I’m stressed all to hell, but I’m coping. I just don’t know what else to do except put on makeup because it’s fun, take photos, because that was a lot of work, and the photos are fun, too. Distraction.

I’ve cut my Beauty Blog to three days per week, Monday, Wednesday and Friday now through the month of May. It’s heartbreaking, because it’s so much fun, but I had to give something up. Nobody would take my kids 😃 Likely because I didn’t offer them. My daughter is struggling a bit with her Autism and anxiety. Mama to the rescue! Poor kid. When Dad has Autism as well, it’s difficult because he wants to help, but he isn’t very adept at relating interpersonally. His approach is completely logical. Not necessarily what one needs in the moment. Fortunately he relates well to the hyper-logical boy.

Off to play for a bit!

Stay stripey, my Zebra loves! 😘

Wednesday!

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Having a restful day relaxing and recovering from yesterday and my doctor appointment adventure. I’m awfully tired today. Very sore, but feeling good otherwise. My hands are unruly, though. It’s like trying to type with mannequin hands. They are so stiff, and kind of sore.

My son had to watch the documentary movie Supersize Me for school, so we watched it together. He has so much homework to do while on break, but I don’t think he’s touched much of it. I know he was supposed to have a bath today, and has ignored all requests to get in and do that. Dad will have to yell, I suppose.

My husband called about that ridiculous taxi driver who was so obnoxious yesterday, and it turns out he is suspended. The company apparently has been having problems with him, but they can’t really prevent him from getting into one of their cars and driving, he’s just not sanctioned. Nice to know, staying home forever now. 😂

I put up a photo of my new highlighter set and got a comment on my Instagram from said highlighter creator, and my favourite makeup guru Pat McGrath, so I am in seventh heaven today! I took some time to play and I had a good relaxing fun experience.

My television cable box  connection has been broken since yesterday. This isn’t enormous, but I get a ringing in my ears and I like some television noise to drown it out. Music is jarring to me, for some reason and that really upsets me. I miss it. I can only listen to things in a certain tone and if it gets too high-pitched, I just cringe. Also, at a certain point I flake. With no TV, I keep on going… not good.

My friend since high school sent me the most touching note. I’m just … I need a few days sometimes between when something happens and thanking someone. I need time to let my emotions settle. It was so beautiful. I’m going to keep that note forever. ❤

Today was a comfortable day, despite the pain. I don’t know if that even makes sense.

Have a lovely day, Zebra friends! 😙

 

Happy Surprise!

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What kind of portal have I entered? I think I will stay here! Or, alternatively, deal only with female doctors. No, that’s unnecessarily sexist. However, the past couple of days have borne some evidence this may bear some thought. Let me start at the beginning and tell you what happened.

You may remember yesterday I had to beg off my doctor appointment because I was in too much pain. My husband had a piggybacking appointment and spoke with her “for” me, strictly off the record, and let her know how I was doing. She assured him that my visit wasn’t a priority and to come in when I was able. My doctors trust my pain management doctor, Allan Gordon, a great deal.

Today I was to see my cannabis doctor. My husband has taken days off to make these appointments. This is how he uses his vacation days. My previous cannabis doctor has just retired, he wanted to research addiction. I am assigned a new doctor. My old doctor is very focused on goals. He wants me to go outside and go for a walk. I don’t think he can wrap his head around the concept that my knees have zero meniscus. Doctors won’t operate on me because of the complications involved. He wanted to lower my dosage, but my disease kept progressing. I think he was a caring doctor, who maybe couldn’t see the reality of chronic pain without it really affecting him. I don’t think he would accept it as being fact. He was also obsessed with what I did all day, where I spent my time. If I was in bed, I had to be asleep. No other choice. It took a year to convince him otherwise. Finally, my husband got through to him.

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Look! I’m wearing people clothes! 😃

When the new doctor walked in, I was hopeful. First of all, she has many Ehlers-Danlos patients. Second, she is on board with the idea of using marijuana in all its forms, oils, pills, green, instead of my other medication. Which conflicts with what the old doc’s priorities were. In fact, he said once he ‘didn’t want to give me anything stronger so I could sit around and play video games all day’. 🙄 I expressed to this doctor that I was still having a lot of pain, and I wished there was something I could take that would help. She reviewed my strain, we talked, she asked me some questions, she asked me if I needed to be alert for work, nope. I do not, so I have some things to try. All without being treated like a drug seeking non-person. One who could lie in bed if it’s more comfortable if she wants to!

This conversation led down an interesting path. She asked about my diagnosis of EDS. I was diagnosed by a geneticist. Asked about endometriosis.  Confirmed and diagnosed in 1989. Do I have a fibromyalgia diagnosis? Well…sort of. I was told they thought I had fibromyalgia, but I really have Ehlers-Danlos Syndrome. Once a massage therapist told me I had fibromyalgia. Then my husband pipes up that Fibromyalgia is in my chart as my official diagnosis. The doctor mentioned I could have both. This is news to me. I will have to investigate this more. Maybe not Lupus, maybe fibromyalgia! Will definitely ask at my appointment in June.

We had to walk a bit to get a cab. This place is badly situated, as we approached the taxi lineup, the first taxi in line is a company we don’t use, and was a minivan I have trouble getting into. As we started walking closer to the second cab, the first cab in line started freaking out (we approached from the back, so we didn’t pass him) it’s freezing and icy, the other cab is closer, and I’m hobbling, very obviously. The cabbie is blasting his horn and yelling. As the cab we’re in drives past him, he’s flipping us off and yelling. So glad I’m not in that cab. Road rage? That’s a major reason we don’t use that company.

It was nice to get out. It’s always nice to be home. I don’t have an appointment for a few weeks now, I can relax.

I need to say before I close, I have had a fair share of uncaring and rude female doctors and nurses, too. Female staffers are the ones responsible for demanding to know what drug I was detoxing from, when she found out I was taking methadone. To telling me to lose weight and I’ll feel better (plenty of men have told me this, I don’t feel better). Telling me I MUST be diabetic because I’m SO FAT, I was 260 lbs at 5’8.5″ and had put on 20 lbs due to being sick and bedridden for 6 months waiting for surgery. The nurse who told me I better not have a c-section after I needed help getting up after having my side sliced open for an emergency appendectomy, which turned out to be my period starting. No grudges, just a long memory.

Hope you’re having a good day, Zebra amix! 😘