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! 😢

💜

Bad to Worse

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I suppose it makes sense I didn’t see this coming. It would be logical my brain would block out the natural next step, wouldn’t it?

My BOTOX injections have been cancelled.

I was due on August 22, so I’m about two weeks away. This means my migraines are slowly ramping up again. For me, this means my headaches that I usually have at the front of my head are slowly coming back. They are almost constant once they are fully ramped up, which they usually are by the time my appointment rolls around.

The person who called said they would reschedule once they had things sorted. But it would be after August, for certain. My back is at a state right now where I can barely move. My neck… It’s in bad shape. By evening I’m incoherent. I was hoping within the two weeks I would be able to touch base with him and at least ask him.

We still have no idea what is going on, however, husband dug around and found a couple of complaints at the College of Physicians and Surgeons of Canada. One is about him improperly examining a woman’s breasts, and another is about improper procedure. Both within 2015-2017. Now, this doctor is 74 (we figured it out). I have been his patient for eleven years. I am very sorry if he made someone uncomfortable, but I have trouble understanding the first charge. I do know what it is like to be in pain, however, and I have seen the looney-toons that walk into that clinic. I can understand a misunderstanding happening. I am completely certain she believes she was violated. There’s a reason I bring my husband along, however. He often sees things without the haze of pain and remembers things I don’t. Also: witnesses.

However, yes, often the staff would forget to have him or us sign consent forms until after the procedure, and that is bad. As head of the clinic, he needs to be responsible for that.

Now, I don’t know if this is why he is off, or the stress has gotten to him. But I understand the first complaint. If the second complaint caused a stoppage of business, I am enraged. Complaining about something like this to the College and denying thousands treatment, especially after losing another pain doctor recently (He murdered his wife, but still)

Not only that, but my pain doc prescribes a bunch of my meds that no other doc can prescribe.

Having said that, the office manager at the EDS clinic at General said we should hear within a month, and if not to call and find out what’s going on,

Husband will call and update her and my pot doc to advise them of the situation and let them know things may be changing going forward.

I am shopping my blues away. Thank goodness it’s cheap crap on Amazon. I will show you some of the cute stuff I acquire.

All we can do is wait and see. I may just give up and go to the hospital. I have enough medication to keep me semi-conscious and get me through. Actually, it’s not that bad. I make myself zone out so I can be in that hazy semi-sleep state. I am going to be much better at taking my medication on time.

I’m even going to work on vaping. I’ve stopped because it hurt, but I’m going to start again. It shouldn’t hurt after a while!

Ugh.

Just Keep Swimming

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I’ve spent the last five days or so sleeping for at least half the day, and I’m still exhausted. I just don’t have the strength nor energy to do many of the things I want to do. I really have to think about what I want to accomplish and where I can spend my energy. If a conversation runs over, so long bath! My daughter had a panic attack this morning and I am pretty much done for.

My husband has this idea in his head that I’m bored. Nothing could be further from the truth! I have lists of things I want to do! I have makeup looks I want to do, books unread and stacked, waiting, crochet projects, movies to be watched, blog posts to write, friends to chat with! As it is, I am busy from morning until night when I have the energy. I can’t seem to convince him, and it makes me so sad.

My neck is so bothersome I just can’t take it. I move wrong and I have intense pain. I don’t know what to do about it. I’m waiting for my doctor appointment in six weeks. Hell, I have pain when I don’t move. I’ve considered going to the hospital, but really, what can they do? My abdomen is also giving me incredible pain. I’ve run out of the higher THC mmj my doc prescribed. I only vaped extra once, so that doesn’t work. I ordered yesterday, so yay.

Good news, I broke 200 lbs! I’m 198 now. I don’t really know how to stop this. I guess I will stop when I’m there? I’m eating what I can, not trying so hard.

Going to try a nap for a couple hours, then try and put a face together, because it’s fun! 😀

Hope you’re having a good day, Zebras!

Nesting

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I’m deep into Nesting mode today. My ex husband used to call me hamster girl, because I love organizing and reorganizing all the things. Whenever I’m “sitting still” you can usually soon hear the rustle of paper. Today I went through all of my makeup and reorganized it. It was already sort of organized, but I redid it. Tomorrow I will tackle skincare. Unfortunately, I tried a look after I did the organisation and when I took the photos, my eyes are wonky. My eye pulls in when I get tired, and it doesn’t take much these days. I’m seeing the eye doctor in a couple of weeks. It might even be next week. I’m going to have to show him these photos.

I had a great time watching South Park while doing this. I love this show. It’s so obnoxious.  It makes such good points. My son’s friends watch it, so if he wants to watch it, I’m glad we do it together so we can discuss what he sees. I don’t know if, at almost 13 he quite grasps sarcasm and irony, and I’m happy he will discuss things with me enough to let me talk with him and ask me questions. I love the one where Kanye is making sure Kim isn’t a hobbit, and the one where Stan and Kyle try to beat a million on Guitar Hero. The music is great! Kansas, The Ramones, and I find it okay! Yay!

I’m still having abdominal cramping, but it’s more muscular than digestive, although digestive problems are happening because I’ve been on a chocolate binge lately. It doesn’t take much to upset my system, but it does take a certain amount to satisfy me! Oh well. Gotta live.

A friend asked me an interesting question the other day. I mentioned the cramps, and she misunderstood them for digestive cramps, understandably, and asked if I was going off FODMAP. No, because it was different pain and we sorted that, but I thought, what is after FODMAP? What do I do after that? I can’t seem to tolerate anything forbidden, and many things allowed on that diet and am still mostly nauseated and having heartburn. I am better in terms of bloating and gas, most of the time I know why I am suffering.

I was going to post yesterday, but I decided to nap instead. So selfish. 😁

My head and neck hurts so much. I’m trying to be cheerful, but it’s tough. I feel like my laughter is a little loud and hysterical.

I can vape again, right? I’ve been teaching people in the house how to help with my apparatus (age appropriately, no kids touch drugs, but they can find my discard bin and get my tubing) so I actually will instead of just lying here.

Have a fab day, Zebras! 😙

I Need a Reboot

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I was feeling pretty okay today, considering it’s just less than a week before my Botox, and traditionally I’m feeling rough the week to ten days before that appointment. Usually I’m as I was at the beginning of the week, exhausted, unable to move much, napping a lot. Just generally miserable and in pain. It seems the mmj adjustment is helping. I felt a lot better today, and was able to distract myself with the makeup blog and some looks. I didn’t even exhaust myself. My neck was very sore, and my head hurt, but I didn’t think about it.

One thing that disturbs me is in took some photos for Instagram the other day, and I was very tired. When I looked at the photos, my eyes were the aligned. I looked at more photos and you can see the more tired I am, the worker my eyes are. These were bad, though. I will bring it up to my eye doctor when I see him in a couple of weeks.

After I relaxed for today, my husband took our son to therapy. I had dinner, daughter is downstairs at her homework, when all of a sudden I had a cramp in my lower right quadrant that took my breath away. And then another. It’s like some invisible toddler is stabbing me. I have no idea what is happening, but it’s painful. Since my pot doctor said to vape, I’m vaping. The intensity of the pain might actually send me to the hospital if I thought they would know what to do with me. It’s not my appendix. I don’t have a fever, chances are good it’s not something acute, most likely something ripping. An adhesion? But things can change, so husband is aware.

Of course, since my husband had the winter tires taken off the car yesterday, we are in the midst of a spring blizzard. He was going to pick up the car tonight, but he may just come home. I want to snuggle.

I’m just going to flake for the evening and watch garbage TV.

I want to finish vaping, take my medication and go to sleep. Thank goodness my body likes sleeping. I’m very lucky.

Have a lovely day Zebra pals! 😘

 

PS. My predictive text is super aggressive and I just can’t fight with it today. Sometimes, yes. I do mean i, not in. Or it. Or I do mean the word I actually say. 🖕 I have been using this emotional and lot this week. Again. Emoji.  Yes, I know, I can choose the word in the bar above. My Lenovo never did this…

 

Gobsmacked!

giphy2OK! First off, let me start by saying the weather here is icky pants. It is +10C today and will be -5C tomorrow, so I am very achy and very medicated. I’m a bit jumbled in my wording, but not inaccurate, if that makes sense. My husband warned me about the weather this morning and told me even his hips were aching. 😔

OK. So, the other day I had mentioned how I was disappointed with the treatment I had received from the customer service at my marijuana distributor. Just to be absolutely clear, I wasn’t so much upset with the delay in getting the paperwork done, because I happened to peek online, and it was finished on Sunday night. But by the time I remembered to check, I’d had my sleeping pill, and it was kicking in. The issue I was upset with was the seeming lack of care the person had when I was speaking with her. What became a problem is I didn’t receive an email letting me know my order was ready to go, because if it was there Sunday evening, it was likely there since sometime Saturday, and I would have been further up the queue, however… I didn’t get to order until Monday evening because I needed my husband’s help, since I have trouble remembering what I am supposed to buy. This really is probably moot since they are pretty fast, though.

Anyway 😄 the impressive part is that one of the customer service team at Cannimed reached out to me after seeing my complaint on my blog and asked me about my experience, and I explained how I understand how professionals sometimes need to detach when dealing with chronic pain patients, but when we get that every day it feels like we are being blown off. That not receiving my email was a problem, I counted on that. He then returned my email and said he would follow up with the rep in a non disciplinary way (good!) and find out what their perspective is, which I think is awesome.

The reason this may sound innocuous as a customer service experience that I’m complaining about is because it’s not the standard I’m used to from them. Last week my husband needed the receipts for my expenditure for 2016, he didn’t even know if we could get them. I was sick, so he called. Boom! Less than 10 minutes, I had the email and a follow up call.

What other company Googles themselves so they can provide customer service? I received this email at 10 pm. EST. Maybe 7 or 8 their time? I can’t remember if they are…oh wait 9? They are in Saskatchewan, they shouldn’t have been in the office, anyway. I’m impressed all to heck. They have been super, so this, what seems normal from Walmart, is an aberration from them.

I think, if I can get it by Friday? I should have enough. But my doctor is saying vape at will! I don’t know how this will work.

Yesterday’s nap ended up being all that happened, but it was gorgeous and I loved it. Naps are only for very lucky people who deserve them very much. 😄😄😄

My husband has arranged with work to start at 9:00 instead of 7:30 so he can walk our son to school. At least he is getting there. Prayers welcome.

Let’s see what today brings…

Have a gorgeous day, Zebras! 😘

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! 😘