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.

Happy 2018!

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The new year is starting off pretty well. The EDS Clinic called yesterday and notified me of a cancellation. My appointment has now moved from April 5, to February 22! Yay!

My sister was here to visit for a couple of days. She is 20180104_080853.jpgteaching English in Beijing with her husband. I haven’t seen them in two years. Of course, I was just getting over that flu/flare-up I was dealing with, so we just sat in my bed and chatted, but it was freezing here in Toronto, and most of North America, so going out wasn’t high on the list.

My sister brought me so much cool stuff! I will show you some over the next little while. I didn’t think of this until now, and loading photos after text is nigh impossible if you are slower than Usain Bolt. 😐

I am kind of glad the holidays are over. I love Christmas so very much. It is my favourite time of year. I love buying gifts and the family get togethers and being with everyone. I love the cold weather and being indoors and snuggly! This year was wonderful, however I ate all the bad foods and I am so uncomfortable. I am constipated and have horrible acid reflux. Oh, fodmap! I run back into your arms! My skin is all broken out – which rarely happens, so I know I need to get back to my regimen. To think, some toffee can cause such havoc!

I have an appointment at home with my cannabis doctor on the weekend. They are charging $75 per visit, which is only slightly more than taxi fare which is about $60 round trip. Driving is out of the question, as my husband would have to park blocks away, I don’t drive. I’m too wobbly to park and escort, and there is no place to leave me in the lobby… this works much better. I get so sick in the car as well. Then on Monday, I see my gynecologist and my sleep doctor. They are in buildings right next door to each other.  I’m going to be tired!

Both my sister and my husband helped me clear out the clothes that don’t fit anymore. I have a few more to go, because I have kept everything as I have changed sizes, but not anymore. I will buy new if I change again. I have kept a few oversize things, but I feel like I have stabilized. I haven’t weighed myself all month until yesterday and I have only gained five pounds, but within my range – it’s probably waste material, anyway. I don’ t fuss as long as I am in my range – within 10 lbs.

I was supposed to see my sleep doctor if I lost or gained 20 lbs. I use a CPAP machine, when I went on it I was on a huge dose of narcotics, and since I have lost 120 lbs and decreased my dose of that medication by a lot, so this doctor will be surprised. I wonder if I still need the CPAP?

Wishing you all the best in 2018!

Check-in

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Hi there! I’m pretty sure I am still alive, but the days and nights are blurring together, and I don’t know where I am, (ha! I’m in my bed, duh!) Or what I am doing. (Either wrapping presents or sleeping. I may be doing both.)

The past 10? days have been strange. I have been incredibly ill. I am so exhausted I don’t know which way is up. I have been existing on what my husband (I presume) has been leaving for me. Brie and crackers, mostly. They are the only things that stay down.  I haven’t seen my husband much. I did force myself awake this morning to speak with him. (Plus, I creaked open one eye and he was running around in his cutest boxer briefs, yay eye candy!) I must be feeling slightly better!

I was to be seeing my cannabis doctor today, but I can’t. Short of a stretcher, I am not in any condition to be going anywhere. My prescription runs out mid-January, so I do have some time, but I need husband to be able to take me there. They have grown fond of him at work. Problematic. Now, the doctor has a remote program I may qualify for, if you’re sick enough, and if you remember last time I went I was forced to walk due to construction and sobbed through my appointment. They have also started a VIP program for $300 per year, which has something to do with remote appointments, but the info was vague, and my husband was the first to call, so… I am not thrilled about two tiered medicine. I am very thrilled we could afford $300 a year, if that is right. It goes with my husband being so beloved – and he wouldn’t have to take a full day off. He could work from home, and take just however long for the appointment. Such a relief for our family.  (Yes, I am aware this makes the doctors sound sketchy, I think they are on par, frankly. Are they money hungry? Hell, yes!)

I feel terrible I haven’t seen much of my kids, but I have been getting up every morning when my alarm goes off during the week at 6 am, and weekends at 9, but I was up around 8. I have seen my daughter during the week, and my son on the weekend, so not much has changed. They’re teens. Always stuff going on. I always want to spend more time.

In Aquatic news, one of our Elder Pleco died yesterday. We are quite upset. However, downstairsn, it seems we have our second litter of bushynose pleco! We didn’t intend to have them breed, but, here they are!

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I found this hilarious, I am tempted!

 

From my favourite advice column:

Not an Act

Prudie advises a letter writer who constantly gets questioned about her disability.

Mallory Ortberg, aka Dear Prudence, is online weekly to chat live with readers. An edited transcript of the chat is below. (Read Prudie’s Slate columns here. Send questions to Prudence at prudence@slate.com.)

Readers! Ask me your questions on the voicemail of the Dear Prudence podcast. Just leave a message at 401-371-DEAR (3327), and you may hear your question answered on a future episode of the show.

Q. Not faking it: I am currently disabled. I’ve worked my way up to being up and about for an hour to two each day. Whenever I go out, people say the oddest things to me. Today, when I parked my car, a man came up and said suspiciously, “You don’t look disabled.” I said I just had surgery and rushed away. This happens almost any time I use my handicapped tag. Friends will tell me that I don’t look sick, or that I look great, and then take it personally when I say that I can’t go out for long or go to events. One of my best friends today asked if I had just tried increasing my pain tolerance. I never know how to respond, and knowing that these interactions are coming makes me anxious about leaving my apartment. What can I say to strangers who confront me about my disability, and to friends who don’t get it?

A: This will hopefully serve as a reminder to all readers that not every disability is immediately visible, and that it’s not the job of the general public to monitor people with handicapped placards for signs that they “really” need them. You don’t owe strangers a damn thing, much less an explanation, and I’m so sorry that so many people have taken it upon themselves to demand one of you. Feel enormously free to ignore them.

Getting this sort of treatment from your friends seems so much more painful. I cannot imagine why your friend would say something as amazingly stupid as, “Have you tried just feeling less pain?” That’s worth revisiting, especially since you say this person is one of your best friends. This is not something you can simply decide to ignore, and your friend should apologize for suggesting you just “get over” something like chronic pain. I hope there are people in your life who understand that you are dealing with a new reality, and who are looking for ways to demonstrate their care and support, rather than demand when you’re going to “get better.”

 

 

I am thrilled I get to miss the in-laws Christmas again this year, as I always get treated with suspicion. The first 7? Years of my disability leave my SIL would ask if I was working yet? Although, I have thouroughly explained my illness to my parents, and my Mother has asked me 3 times if I am coming up for Christmas.

I do hope you are having a wonderful holiday season if you are celebrating!

We celebrate Christmas, and I am currently trying to wrap what I can day by day. My sister is coming to visit, she has been teaching English in China, and I haven’t seen her in a couple of years. She will be here after the holiday. I have no idea when, but hey – all will be revealed.

I’m desperately trying to rest up. Taking my vitamins. Staying warm, Husband knows he will get sick as soon as he stops.

Ok. I am exhausted. That was far longer than intended, but good to share.

Sending lots of love and light!

Sunshiny Day! 😄

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I have a feeling today is going to be interesting. I’ve noticed several people haven’t been posting, so I hope it means they are feeling better with the weather and are enjoying themselves. I know I have a way different experience in the summer months. My joints tend to be looser, making it harder to walk, but my pain tends to be less intense overall.

I was supposed to see my eye doctor today, but I’m in too much pain. I know I’m usually in less pain, but I saw my Cannabis doc this week, and well, actually I saw a different doctor, this being the third doctor, since my original doctor left the clinic at the end of last year. This new doctor actually gave me instruction, as opposed to the original doctor, who suggested I get all info from my friends. Since I had no friends that vaped, I was pretty much on my own. Of course he treated me like a drug seeker! This new doctor actually sat with me and suggested I break down my vaping times. Change is tough, though. My body is adjusting. I keep forgetting, so I get really sore.

My in-laws called and announced they were dropping over today. My husband won’t be home. My daughter and I aren’t sure where to hide. We are sure we’ll be embarrassing.

The good stuff:

  • I have clear skin, no acne today!
  • I bought these really cool stands from kikkerland, a phone stand and a tablet stand that hold my stuff perfectly. Now I always know where my phone is, and I can have my tablet on while I do other stuff. I will post photos, if interested. $15 and $20 USD.
  • I bought the Pat McGrath Lipstick collection launched this week. I’m lucky I can do this. 😊
  • My kids have been lazy as hell, but very loving lately. I have great kids.
  • I have some really great friends. They really understand me. That is a blessing.
  • I am slowly getting organized. It feels really good. I have to get my blog check-in in sync, but I will get better.

 

I may be hurting, but I’m feeling positive. There are many loose ends that need to be tidied. I need to find out what is happening with my doctor, the EDS clinic, etc. I need to follow up on the neurologist to find out what’s happening with this head pain. But I’m doing well otherwise. There’s lots of napping going on.

😊

If it’s Good Enough For Drake…

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I had to hobble to my Cannabis doctor yesterday. My husband came with me, naturally, because I don’t get around so well, but this was a nightmare.

At this point, I can walk maybe 50 feet comfortably, without struggling. My knees pop out like nobody’s business, and I’m having a hell of a time right now. I’m not certain what to do. We’re debating buying the damn wheelchair, as it’s not like I’m going to suddenly be able to walk long distances. However, should I be investing in a walker, as I’m hoping the EDS clinic can come up with some sort of bracing or physio to help strengthen things.

We caught a cab to my doctor, which is at one of the busiest intersections in the city, and if you know anything about Toronto,  that old joke about the city having two seasons: winter and construction is not far off. The cab couldn’t drop us off in front of the building, because the front was walled off for construction! We had to drive two blocks to get to the end of the wall. Guess who had to walk two blocks to her doctor? Yes! Me!

Of course, my knee subluxed, and I was hitch-sobbing in the elevator, limping into the office, crying most of the way through the appointment. The doctor didn’t seem to mind. He has a reputation for being a real jerk, but by the comments, it seems maybe he doesn’t like fakers. The appointment went well, considering, and I even learned I have been vaping wrong for the past 5 years.

My original doc gave me a prescription and told me to ask my friends for help. It’s so absurd, he kept treating me like a drug-seeker, but I so was not. Of all people! I’ve learned so much from my last two appointments with new doctors!

After the appointment, we usually walk out to the taxi stand, but that was gone, so I found a place to sit, while this guy followed my husband around telling him the lead singer of the Verve died, and since he looks like him, he can have a new job! Ugh. My head is killing me, my knee is killing me, I feel like I’m going to hurl… please let me go home.

So husband is trying to find a cab, but the curb lanes are blocked and no one will pull in, so he walks the half block to the line and promises to pay the fine if the guy gets caught. It works, and the cab has a.c.!

I have to get used to the idea of a wheelchair.

I haven’t even considered if I can handle something motorized or not.

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.

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…