The Appointment

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I haven’t posted in a bit because my head and neck pain has been really bad. I have been trying to cope as best I can with frequent resting and making sure I take my medication on time. The pain has still been so overwhelming, the only thing I could really do was sleep. So I was sleeping up to 18 hours per day. I had also developed this weird swelling of my mouth, but I think we’ve figured that out. I didn’t have it last night, so cleaning my mouth guard seemed to help.

I was really hanging on for my doctor appointment.

Husband and I arrived well in time for our 8 am time. We waited a few minutes and were called in. He asked what we were there for, and I began describing my symptoms. He stopped me and asked if we were dealing with this before with the previous doctor. No… He referred us to you, the neurologist. Oh, but he’s not a neurologist! He’s an anaestheseologist! This appointment is to ensure I have enough medication!

My husband spoke for a while after that while I tried to compose myself. All I know for certain is we have more of the magic cream that makes my neck feel awesome for ten seconds. It’s actually not bad.

There is no neurologist on staff, but they are hiring one. So he will refer me. It will just take a long time. I also demanded a referral to a gastroenterologist, which he tried to dance away from, but I insisted. Sorry if you have to do work, doc.

I saw my GYN on Tuesday, much better appointment. She feels my period was a one-off. No cysts or anomalies on the ultrasound. Did a full exam, while uncomfortable, we determined most of my pain was likely gastrointestinal, hence the gastroenterologist. I have a very sharp pain on my lower right quadrant that is horrific. She also gave me a prescription for visanne, should things get out of hand.

My husband was brilliant and rented a wheelchair for these excursions. It made things so much easier! I didn’t feel like I was dragging myself down the hall. We have a prescription to buy one. We should get on that.

I’m not entirely certain what to do now. I can’t live like this for 6 months until they sort things out. I will get in touch with the EDS clinic and see what they have at that hospital. ¬†My GP will refer, he just doesn’t know to whom.

The other option is ER with every flare. Not good options.

Oh, and I will be getting my migraine shots, at least. They are set up for October 24, with a doctor who is amazing, so that’s positive. He doesn’t do the rest of the body, though, and a shot in my pubic bone would go a long way to less pain. My back… I could probably do it myself after 12 years! Ha ha!

Ok, getting tired.

I’ve bought a bunch of cute things to cheer me up lately. I hope I have the spoons to show you soon! ūüėĄ

Hugs to all.

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I’m Here… Sorry!

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It was pretty darn rude of me to just drop out of sight like that, but I’ve had a hell of a week.

My son has had phenomenal anxiety. He is enrolled in a day camp, and he can barely attend. He struggles so much. I had a long chat with his counsellor today, so I feel he is getting some good help. Being a teen is tough. I didn’t like it either.

EDIT: I spoke to his professional counsellor for therapy, not his camp counsellor, he actually did that himself.

We have permission for a wheelchair. A temporary one. My doctor is hoping we can still do something with my knees, and we hope I can walk part time.

My hands, wrists, and fingers have been awful. They hurt so much. I’m not sure what to do. Resting didn’t help. I keep being told to wait for the clinic but it could be 6 months away.

I want to sleep all the time. I’m so tired. I’m trying to be awake, but I start falling asleep like I am now. ¬†So I have to go.

I’ll try again soon. ¬†Taking vitamins. ¬†Maybe it will pass.

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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.

Dear Prudence Letter Should be Required Reading!

It’s no secret I’m a huge fan of agony and advice columns. One of my favourites is Dear Prudence, as she rarely gets it wrong. (Unless we’re dealing with baby names).

Read the first letter in this column and see what you think!

I Made a Disabled Woman Cry Trying to Help Her With Her WheelChair

Transporting my EDS Body

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I don’t¬†get out often these days, but when I do, I have several options. Lets look at them.

Walking

Walking for me is problematic right up front. My lower back pain is unpredictable. Some days are better than others. I’ll tell you a huge secret! No, I don’t feel different after losing weight. My pants don’t fit. I don’t miraculously feel lighter. Sorry to disappoint all the doctors who asked me that. My knees are still as wonky as always. They tend to sublux and cause me to stumble. ¬†I found that wearing a small 1/4″ heel occasionally will help with pain. I don’t know the science of it, but I like it. I have orthotics, thank goodness my company pays for them, they helpyaqsguxbyq1jc immensely. My hips and knees aren’t as sore with them, and I use a cane. After about 20 minutes, my wrist and hand are very sore, but I’m not walking that far, anyway! I can’t walk more than half a block, and that’s slowly on an excellent day. My back is too awful. Stairs are hard. We live in a 2 storey, and I’m upstairs. I need to go to the dentist on Monday, and I’m afraid of both my stairs and theirs. When I first made my initial appointment a few years ago, I asked if the office was handicapped accessible and was told yes. The flight and a half of stairs tells me otherwise. But he’s a great dentist. Even though one time my son was helping me up the stairs there and a kid came running up and pushed by us and i nearly fell down the stairs. I still have nightmares. Good thing husband was behind us and grabbed her before she could do anything.

When going down stairs, I usually have husband or a kid go in front of me, and put my hands on my shoulders for balance. We then walk in tandem, like we were going through a haunted house.

Wheelchair

I do not own a wheelchair, so we have occasionally rented or borrowed one from the site we were visiting, or a rental store. These are good for longer trips, I’m much more comfortable, ¬†I can relax and participate, I don’t get tired right away. My time here is about three hours. On an exceptional day? Five, but that’s with a week’s rest after. That’s pushing it. My husband usually pushes, but friends have stepped in. I have contemplated a scooter, but I want to lose weight first. I don’t want to be a stereotype. (Kidding, I’m actually just vain and cheap. I dont know that I’d use it often because I’m hurting right now, but maybe if I’m feeling better. They are really expensive, so I want to wait until I have a better idea of what to use it for.)

Car

I didn’t learn to drive until I was pregnant with my son, and even then, I never drove on the highway. Shortly after his birth, my pain increased again, and thusly, my pain medication. Did I¬†want to be a new driver on pain medication? Nope! Especially not with two babies at home. So, I gave up my license. Fortunately, ¬†I live in the largest city in Canada, and Ontario provides a non-drivers license. It’s a license that acts the same as a driver’s license for identification for non drivers. It’s fantastic, because I went to get cable hooked up at my new apartment, and they wouldn’t do it because I didn’t have a drivers license. Husband did it for me, but what the hell? Anyway, husband does all the driving. He takes public transportation unless chauffeuring¬†me, or getting groceries. I can’t¬†sit in a car too long, though. We just upgraded our car in 2014. Previously we had a 1989 Caprice Classic. This one is far more comfortable. My parents and in-laws live an hours drive north, so visiting is tough. I only made it once last year. It has to be a really exceptional day. Exceptional days aren’t that common.

Public Transportation

I used to take public transportation all the time. We have a good system here, no matter how many people complain, but I can’t walk the two blocks to and from the stop anymore, and I usually don’t get a seat. If I don’t get a seat, I’m usually falling all over because my balance is so bad. The street vibrations are terrible, they flare my pain incredibly. The stations, if something is out-of-order, the elevator, escalator, I’m screwed. For the number of times I’m out, it’s too risky. I could get hurt so easily. People get so impatient, I’ve nearly been pushed down the stairs a number of times.

Wheel-Trans

Wheel-Trans is run by public transportation. It’s a service for the disabled, and you need to qualify. Once qualified, you arrange in advance for a ride, and a car or Wheel-Trans bus picks you up and drops you off. You can arrange for a return ride as well. All for the cost of a transit fare. The issue is, they can drop you off within an hour of your appointment and pick you up within two hours after. Lets say you have a therapy appointment that lasts an hour. You take 20 minutes to ride there, they drop off 2 customers. So they pick you up 2 hours before your appointment, ¬†get you there with an hour to wait, you have your appointment, you wait two hours for them to get you again, ride the half hour home, nobody to drop off this time. That’s a long day! If you’re in pain? Not happening. And they are on a tight schedule. If there are any screw ups? You are late. I used them a lot when I went out more. It’s easier at night, they’re not as busy, but doctor’s appointments happen during the day, mostly. I had this one therapist. I asked him what I should do if my ride was ever late? He didn’t¬†want to talk about it. I pressed him. He refused, said it wasn’t an issue. One day, my appointment was for 11:00. 10:55 my ride still wasnt there, and it was 20 minutes away. I tried to call the doctor, no answer. Finally, at 11:05, my ride shows up, and I wave him away, what’s the point, right? My doctor calls me at 11:07 screaming at me that we could have had 15 productive minutes. Physician, heal thyself! Anyway, I’m not doing the Wheel-Trans thing at the moment, but it’s an awesome service when you’re out a lot and those cabs are adding up. I’m just a bit fragile, in pain, and lucky to have options at the moment.

Cabs

Cabs are how I get around, probably the most. If husband isn’t taking me somewhere, and these days he almost always is, I’m going by cab. The cab drivers in this city, for the most part, are
3oeduroxib6lo9rxgcexcellent. I’ve only had a problem with a few. Problems include the driver who stopped for me, found out I¬†wasn’t going far enough for his liking, and pretended he was there to pick up a specific fare, after I was sitting in the back seat! Do you know how hard it is to untangle yourself from the back seat some days? That was one of those days! Mr. VITAMIN I referred to in a previous post, and the guy who was bringing me home from the hospital who drove so recklessly I thought we were going to have to go back!

Where am I going?

It sounds like I’m going places, doesn’t it? As of Friday, I¬†haven’t left my house in a month. I have the dentist on Monday, it’s in the neighbourhood, my Botox treatment on Tuesday, and then rest. I’d like for the family to see Hidden Figures, since I live with 3 math, science, and space nerds, but it might have to come out on DVD. Next month I’d like to go to the Bite Lip Lab and get custom lipsticks with my friends. I have two different sets of friends who want to go. I have to choose places wisely. No huge staircases, must have places to sit, be a short walk from decamp to door, not too loud or bright, or smelly, not too far from home, must be a quick exit, have accessible washrooms or we are going to be less than two hours, and not too close to home, either. (Too close and I can’t get a cab. I still can’t walk it yet).

Doctor’s appointments and makeup. Sums up my life perfectly.