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.

Upsetting News

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Ugh. My husband called the pain clinic to harass them about my not getting callbacks. When he listened to the Clinics outgoing message, he learned that my doctor, the head of the clinic, is away indefinitely.

I’m frightened.

Firstly, he did not look at all well at our last appointment. He is quite overweight, and looked pale and well, grey.

Secondly, he is not a young man. Going by his graduation dates, he is in his late seventies to early eighties. He has been pushing himself hard, working at least five days a week at the clinic, and travelling all over the world lecturing on pain management. I do hope he is able to recover.

The clinic has assured us it is still running, but, selfishly, I have my shots in two? Weeks. Nobody is as talented as he is. I’m going to get some hesitating ass. Nightmare.

Currently I have referrals out to:

  • Neurologist
  • Gastroenterologist
  • The hand and knee specialists retired so I’m waiting for the EDS clinic.

My heart test came back, it was ‘grossly normal’. Now the EDS clinic has everything they need, and the Manager said we should hear from her within a month, if not to contact her to find out what is going on. I don’t expect an actual appointment, but a date gives me hope. ❤

My good friend is moving an hour and a half out of the city. I dont get to see him much anyway, but he was offred a great spot in a retirement home and he can’t pass it up. We talked for an hour last night and damn it cheered me up!

It’s just so hard to get together with people when you feel lousy, and your kids take over the house, it’s not that big to begin with, and you can’t even serve tea. You don’t want to treat your family as staff, but you want friends to yourself, but as adults, do they come over and hang out in your bedroom? What the hell, sure! 😂

I don’t like this change nonsense.

If you can pray for my doc, I’d appreciate it. I hope he just needs rest.

Heart Test

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I had a heart test this morning. I needed to have one before they would let me into the EDS clinic. So there should be about a weeks wait before I see the results of that. They expect a six month wait for the clinic, so I just need to hang on. I hope they can do something, because I feel like crap. I don’t have much of a life going on, and even the cab ride was pretty tough.

The test itself was fairly intense. I’m used to the quick EKGs where they clip you on and monitor for about 5 minutes, but she did a full ultrasound. I brought husband along, as he’s good at Intel, he’s my sherpa, and I am not too steady at the moment. He helped me change, I just had to get naked from the waist up. I lay on my left side and then my back while she spent at least 20 minutes with the ultrasound on my chest.

My husband couldn’t figure anything out. He said some of the notes said my heart was of normal size, which sounds good. I’m curious as I’m now sleeping up to two 24 hour periods a week. That isn’t normal. It could be pain, though. My head still hurts a lot. My neck hurts. I just try and do things despite the pain. If I don’t, I will just sleep all the time. That’s no life at all.

Still waiting on the neurologist.

I did get a rubdown in Voltaren before we left, and it really helped. I need a cabana boy. Someone to bring me drinks and rub me down and act as eye candy. 😀 I wonder if my husband would quit his day job… nah, I want new blood! Ha ha ha! Okay, I’ve lost my mind! I do need someone to rub lotion on me and make certain I take my medicine. That’s what I need.

All right. I need to go look up some braces on the net. My knees and elbows have revolted enough.

Be good. 😊

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.