Time Flies…

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Hi there! I know I have been super neglectful, but the last couple of months have been quite the rollercoaster and I have not had the spoons to also actually get off my arse and keep you updated, so now the time has come.

Firstly, I finally got in to see a gastroenterologist  and a fellowship student. Hallelujah! They listened, asked questions and took my concerns seriously! I am on a few new medications, I can’t even begin to describe how much better I am feeling. When you go from pooping every 14 days to nearly every day, what a difference! My back pain has cleared up considerably. I have a number of tests to do in January, scopes and such, so hopefully we can learn what is going on. Rather annoyed this took so long, but was rejected by rather a lot of doctors.

My chronic migraines are leaving me so dizzy I’m having to use my wheelchair more than I would like. I was referred to another doctor as my new doctor is studying for a year, and I think it will take some time to adjust. First visit, he injected into my jaw and chewing has been a nightmare since. I see him in a couple of weeks, so I will discuss this. He seems nice, so it shouldn’t be a problem.

My vision is so bad I can barely see even with my new glasses, so I’m going to try to get that sorted. I think it’s the migraines, but who knows?

My kids are struggling with school attendance. They love school, but anxiety is high, and with autism and learning disabilities, it’s just not easy. They get pretty high marks, though, so I hope they can pull through.

I’m still having trouble sleeping. I’ve been begging for help for over a year now with no results. I was told I needed to see a psychiatrist as they are the only ones who know about sleep medications, but when I brought it up to my doctor again he told me it was a waste of a psychiatric appointment. I have no idea what else to do. I’m becoming suicidal and wondering how much longer I have to live before I can say I tried. When I spoke to another doctor about crying from exhaustion she said “oh, yes, so you’re depressed.” My jaw dropped.

So everything is fantastic, as you can imagine. I am so tired of fighting to be heard. It’s frustrating to say something to a doctor and have them completely talk down to you, then have my husband say the same thing and they suddenly switch on their understanding. For example: I spend most of my time in my bedroom, but I’m not lying down or sleeping,  I’m puttering around.  Doctor tells me I’m lazy and should do something so I will feel better.  Husband repeats what I just said, Doctor now understands that I spend the day doing crafts, playing with makeup and puttering. It makes me furious!

I’m going to take a break now and cry some more. I will try to be back to a more regular schedule. Perhaps not as mentally deranged. Although I have a sense of humor about it. 😜

Hope all your pain is fleeting!

❤🦓

 

A Piece of the Puzzle

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I visited the neurologist yesterday. She is amazing. Just lovely. Personable. Kind. Great bedside manner. She actually cares. Or if she doesn’t, she is a great actress! 😆

My appointment was for 2:30. We got in at 3, and left at 6, after everyone else. That’s dedication. Plus, she gave me nerve blocks in my face and head. I’m so happy!

Remember how I have been whining about these headaches since March, when they started? I have been having nausea and vomiting, dizziness, and a few other symptoms that are too minute to go into. I saw my pain doc in June, who is a neurologist, asked him about going to the emergency room. He shrugged, and kind of stumbled over words. I’m not a fan of the ER either. I’ve asked each doc about going to the emergency room with my symptoms and none were enthusiastic about me going, but didn’t love me sitting home in pain, either. But every one referred me to a neurologist.  We have a definite shortage right now. I’ve been rejected by a few.

Anyway, this doc feels strongly it is Spontaneous Intracranial Hypotension. Essentially, I have spinal fluid leaking and I will need to do what is called a blood patch to fix it. I think that is a transfusion of my own blood and an epidural with it, but I was tired by then. I will have to research more.

Yes, it’s absolutely an EDS thing. Lucky me.

I do need an MRI, but the doctor said she felt my case was so strong, she felt we may not have to wait for the MRI before the patch, but she would speak to the doctor who does the procedure. He is someone I have worked with before. Highly skilled! Love him!

In the meantime, I need to be horizontal as much as possible, because it causes the least pain.

I’m going to rest now. Yesterday was a long day!

Hugs,

Just Breathe

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Oh, well, things are back to normal. Life is back to kick me in the ass and remind me I am sub-human, in case I had forgotten. One of the latest games is to obnoxiously correct my grammar as I am trying to form a sentence. I’m just pleased if I can communicate an idea, never mind if I remembered it was try to instead of try and. Maybe people are thrilled they can bulldoze me for the first time. Worse,  however, is I can still hear that horrified ‘oh my God’ when referred to my size in the conversation of last week. I mean, I’m 5’8″. When I carry extra weight, I look huge.

So, I’m finding being judged at every turn very tiring. Everyone has something to say. There are actually people in this world who believe you draw to you everything that happens. Therefore, if I am suffering pain, I must be a bad person. Genetic? Bad in a past life. I’m fat? Then using a wheelchair because I’m lazy, no other reason. Now that I’m close to average size, I’m treated so much better by doctors and strangers. My friends are gone, though. That often with weight loss, I’ve heard.

I’ve been suffering a lot of knee pain. It keeps me awake at night. It’s awful. I hope it goes away. I have been bracing like crazy at night. My shoulders are really bothering me. I’m not certain how I could brace them, but I’m resting and keeping warm.

So many doctors have turned me down! I can’t get a specialist! They keep saying to wait until the EDS Clinic sees me. I’m so glad we are 5 weeks away. My clinic is no longer doing Botox. Great. Just found out. My head isn’t too bad, knock wood! I think many are not comfortable without the specialist support. So we wait and take things easy.

My days have nice flow. Wake at 6. Breakfast, coffee, Instagram. See kids off to school. Deal with emergencies. Play with makeup.  Lunch. Crafts for an hour. Nap. Tidy, hang out, organize. Time with husband, night meds and snack. Sleep, painsomnia, sleep.

God, my face hurts. 😣

Untitled.

I received an email this morning telling me that the reason my old pain management doctor was on leave was because he sexually assaulted three people and the College is calling for more stories. The clinic is being shut down. They didn’t hide their glee. They couldn’ t wait to lay their story on the College!

Look, I’ve heard the rumours. I’m horrified.  I’m disgusted. I don’ t know if there are any people out there who aren’t monsters. Yes, people. Women have been just as disgusting to me as men. Which is why I’m sitting here alone.

I really don’t understand why you have to clobber me repeatedly with the facts. I said I wasn’t sure what was happening, because I heard your version, everybody has heard your version, but the facts are playing out differently.

I am having appointment after appointment booked with… the new Head of the Wasser Pain Clinic? Dr. Peng! We go way back! He’s amazing! Very different from Dr. Gordon! Will this be permanent? Nobody knows yet.

What you don’t seem to understand, is that Dr. Gordon was always cordial to me. Was that because my husband was there? I don’t know. But he was the first person to listen to me. So I can’t throw him under the bus for a game of telephone. The first person to say he assaulted me, absolutely. I don’ t think he’s not capable of it. I just don’t lose my mind over non-verified conjecture. We are talking about a fifteen year relationship, here.

Anyway, moving forward, if anyone could show anyone else some compassion for losing their long term doctor, not being able to access care, that would be great. I sat here for three months not being able to sit up for more than fifteen minutes most days because my pain was so bad, and I couldn’t arrange to see anyone as he went on leave right before my appointment. If I sat up too long, I’d start puking.

I think if Dr. Peng is truly taking over, things will look completely different at Wasser, it will be like a breath of fresh air. The man is a genius! He is very strict, though. Doesn’ t like fatties. He treated me so differently this time around when I was skinny. 🙄 my only complaint.

I’m going to go process this some more. (Cry) I really only have to muddle through until April, when my appointment with the EDS clinic happens. I’m expecting big miracles from them!

 

 

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.

Slightly Brighter Day Dawns

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You know how it is when you make a big deal about something, it always resolves itself immediately.  I woke up this morning feeling not quite so desperate. It’s an awfully good way to feel. The pain is still very much there, and my back is screaming at me even as I’m lying here, but I don’t feel quite as nauseated, and I haven’t even vaped yet this morning as the kids have just got off to school (I like to wait until they are out of the house if they are going). I feel that may take care of things, but I do have my breakthrough if not.

After I get my meds in, I expect to be somewhat comfortable as long as I don’t move too much. Stay loose, just maybe I can slip in the tub later if I’m good? Maybe?

I will be lying very still and calmly today. Trying to get some good rest in. I don’t want to exacerbate things again. Not to that level.

If the pain doesn’t subside enough we are aiming for an emergency room visit if we have to on Monday. I’m Canadian, so we had our holiday last week. The kids would be in school, less chance of upset. Husband wants to be with me, he’s expressed this, there is a major crisis at work, so this would be optimal. I have time to see if it resolves, and time to rest. Naturally, if it becomes too unbearable, we go, but even though my kids are aged appropriately, I am not certain leaving them alone is possible, and bringing them is also problematic. So my husband would have to drop me off, and that isn’t ideal, either. I’ve had some poor treatment in hospital, including the doctor who told me that I was “just constipated”. I grabbed his notes and threw them down the hall I was so insulted. I hope I’ve matured beyond this.

Time for rest. And vape! 😎

I’m expecting comfort. Not miracles!

I’m Sick

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I guess I’m sick, I think. It’s tough to tell anymore. Last night the nausea got so intense I couldn’t even take my medication.  I just swallowed some Gravol and eventually went to sleep. I only refunded a little bit. I’ve been sitting around watching lame TV, as I can’t be arsed to find something great. Actually, Family Guy and John Tucker Must Die isn’t bad. I watched it yesterday.

I just popped two more Gravol, as my husband came to check on me, he hand fed me. How pathetic am I? Today is even chocolate chip pancakes day.

My neck and back are incredibly sore. I want to vape, but I’m too nauseated, I feel if I move an inch, I will be in big trouble. We keep an old cooking pot as a barf bucket, so it doesn’t matter if I can’t move fast. But I hate it. I should be used to it. Not only am I a puker in general, I have a past rife with bulimia.

I’ve been shopping. I’m bored and hungry and feeling sorry for myself. I just bought some Unicorn Snot! 😄 it’s glitter gel for face, body and hair, but also a lip gloss formula. I’m excited. That will be fun to play with. I bought some loose pigment and mixing medium from MAC, I don’t shop there much, and an eyeliner from Sephora.  I purchased a couple of cute boxes from Amazon, too. I have great toys to play with, now I just need the energy to play.

My husband has been on the phone most of the weekend in meetings. He’s working so hard.

I am scared because my nausea has been fluctuating with my neck and head pain. I had a weird experience this morning where I was asleep, I think, but I experienced these bright flashes of light, excruciating pain and a sound like an explosion, and then the pain would subside. It happened twice, maybe three times? And I either fell asleep or into a deeper sleep. It was horrible. But was it a dream?

I don’t know what to do anymore. I don’t think the hospital is the right place. I don’t think they can take the time to figure this out. Although the can ensure its not an urgent issue, I suppose. My GP would send me somewhere, and ask me for suggestions, so he’s really not much good. My pain doctor I’m seeing in a month, so I just need to hang on. The Clinic is supposed to be on the radar, but I haven’t heard from them. My options I’m considering are calling Tele health and asking for advice, although they usually send you to hospital.  Then, I could call my pain doctor or the evil social worker and ask for advice. I could at least have assurance I’ve been referred.

I should have a bath, although I just don’t feel like it. I can’t now.

Be well, Zebras! 😷