The Doctor Appointment: or I’m the Girl with the Most Cake

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I attended the doctor appointment of intrigue on Monday, and found out SO MUCH INFORMATION! I have needed two days to recover. Also, my nerve blocks are wearing off, so please bear with me, my face hurts.

Well, it seems the lovely doctor who did my nerve blocks at the other hospital is now not able to be working at both hospitals. This may have contributed to communication breakdown. But it also means she had no reason to see me or take me on as her patient. When I sent her that desperate email, I had no idea, and she could have said, sorry, don’t work there. However, she took me on as her patient at the other hospital. I am so very thankful.

Now, the doctors at the clinic wanted to know how much I know, which was nothing.

The very first miracle was having the admin at the pain clinic bumping me up in the schedule so I could see the migraine doctor in the first place. I think she only saw a few people, and my husband was very nice to her, as he just is, and she knew how much pain I was in, so she got us in right away. I don’t think she brought many patients with her back to her clinic.

Now, back to the appointment. Remember the scary, nasty woman who worked there? She was in charge of this appointment. She was a ray of sunshine. I believe it was finally having job-related duties. Anyway, we had a lovely conversation. Originally, I was sent back to this clinic to get off of an inappropriate medication. Then she asked some questions. Who has been following up with me? No one. What are your other issues? Well, I spoke about my knees, arthritis, we are going to the arthritis society, it’s not too bad.

My pubic bone. I spoke about being laughed at and dismissed by the EDS Clinic. She looked concerned. I told her that it might not be an EDS issue, but it still hurts, and even if he says it shouldn’t it still does. Then it clicked. I told her it might be an injury from my daughter’s birth. They tried to keep her in until she was 37 weeks, but she was an oz short of 8 lbs. The doctor had to stand on the table during my c-sections and rip her out of my pelvis. The only reason I know is because my husband is 6’5″ and could see over the curtain. He turned white (er). He didn’t tell me until later. She looked at me in horror.

I told her about my back pain, which she blamed on inactivity, of course, but my husband jumped in and mentioned it was our original reason for visiting the pain clinic, and how I was improving for so long.

When I thought about it though, doesn’t it make sense that the back pain is the other side of the pelvic pain? Duh. I really am ashamed it took me 16 years to figure this out. Not to mention I was in labour for 2 days with my son slamming against my pubic bone. They gave me an epidural for the pain right away. Then when they looked at the ultrasound realized he wasn’t going to fit. I am 5’8″. I’m not some little, slight, thing. Oooh, fun fact. While I was still under the illusion of VBAC I received advice from Michelle Duggar, who was on kid number 8 or 9 at the time.

When the doctor came in he told me he had given me one round of Botox injections. I agreed. We then went through everything again… at which point I corrected him and said: Dr, you gave me two sets of Botox, and a guided nerve block under anaesthesia. He was not like being corrected, but was kind of… okay! Knows her stuff!

At the end of the meeting, he was unimpressed no one was following me. We were expecting to see an appointment at the EDS pain clinic in September. So he booked me for a full exam in July.

Surprise! We have an appointment with the EDS Pain Clinic mid – June! So we are going to let the other pain clinic know, just for transparency, and see what they can offer. Another Miracle!

It was so amazing, I called my Mom as soon as I could, as my spoons came back, on Monday. We are so different! I was marvelling at the miracles and my luck, my Mom wanted to know how everything got so screwed up! She said everything should be perfect! Well, yes. It has taken me so long to get over that expectation. Sometimes miracles happen when things are messiest. I can’t demand perfection when I live in chaos. My daughter has perfectionist tendencies and it nearly cripples her from doing anything. It’s painful to watch.

Embrace your imperfections. They are some of your most endearing qualities!

I am still working with the Cefaly! I will give you an update in a couple of days!

Lies I’ve Been Told…

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“Looks aren’t that important in life, it’s what’s inside a person that matters.” …

“I am your friend,”…

“That looks great on you!” …

“You’ll regret it!” …

“I’ll never tell anyone, I swear!” …

“You can count on me!”…

“This medication is non-addictive.”…

“I would never lie to you,”…

“I love you!” countless…

“If you lose weight you’ll feel better!” x infinity…

“Your doctor will call you back in three days…”.

“Your doctor will call you on Tuesday.”.

(Sigh)

Now, to be fair, it seems the clinic is moving floors. It essentially broke down earlier this year (at last check, admittedly a bit ago, only complaint with my doctor who ran clinic is about paperwork. Will keep you posted. Must have hubby do checking am too weak),  and it seems to have merged with another pain management service. My new doctor, who was only in this clinic once a week anyway, has not been in, due to the chaos. I have confirmed the scan is on my file. Now, I don’t even know if the doctor to administer the blood patch is still on staff. I caught a quick article up online for only a couple of hours that stated there are no doctors in my home city to treat chiari if it turns out to be. I will burn that bridge when I get to it, but I am pretty miserable here. I essentially lie in the dark most of the time. The straighter my neck the better. My vision is very bad. My tablet is turned way down, as is the tv. Very dark. I can’t stand noise. So it’s not always watchable or useable in the tablets case. Last week was great- I could sit horizontally and play with makeup for a little bit! Have a rest. Organize some items I had tossed aside when feeling terribler. So much better than lying on my side in the dark. I have incredible trouble sleeping, so I stare into black space for hours. It can be awful. And the facial pain. Ay-yi. And the back pain so bad you almost faint, but you don’t.  Because you’re home alone. On really good days I get to sit up for a while before the pain starts, the nausea and dizzy take over. On really really good days you can turn on a lamp.

The EDS Clinic said I could be in to the pain clinic there by the end of June, so hope oozes from every pore! No, I am grateful as I’ve been inappropriately medicated for a long time. I would like to sleep, maybe? Once a week? My former pain doctor had been planning to change my plans for medication for a while, as he suspected I might be causing myself pain with what I am on. (Apparently it’s a thing) Plus it has been a year since I have had proper migraine shots, so dealing with intermittent migraines, too. Fun! 😄

Oh, and a lady from Chiari Canada has been so lovely and supportive in corresponding with me, even though she is so busy. I appreciate it so much.

My rugrats gave me their flu or cold or whatever… I am not amused. I shall take my whiny butt back under the blanket.

I shall let you know.

 

 

I Don’t Want to be a Pirate!

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…and I don’t want to walk a marathon, either.

So, I went to my appointment at the brand new EDS Clinic last week. I managed to survive. It took me a while to not only recover physically from the appointment, but to process the appointment itself.

Overall, the appointment was a success, I think. I went into the appointment with a fairly open mind, free from expectations, just hoping for some benefit.

Now, it seems the purpose of this clinic is to gather specialists who have an interest in seeing patients who have Ehlers-Danlos Syndrome. They currently have a gastroenterologist, a psychiatrist or psychologist I can’t remember which, and are working on the physiotherapist.

They reviewed my case, and then did a physical examination. First there was one doctor, then another came to see me and did her review. This took over two hours. Nothing special, except they detected arthritis in my left knee, which would explain why it hurts so much, and probably why the pain wakes me up at night. This is fairly new.

Now, really, aside from pills, the only treatment for EDS is physiotherapy. We all know this. So it was no surprise this was the hard sell I was given. They told me I was severely deconditioned. I cannot argue with that at all. But it was presented as: the doctor would say it normally. Then he would say it slowly, providing a long explanation. Then he would reiterate it quickly. He tested me for POTS, but kept me standing up, in pain, as the machine kept erroring. Then, he made a note for my doctor to monitor my blood pressure because it was borderline. I was so annoyed. This was toward the end of the appointment, I was in so much pain, the room was spinning, and nobody was nearby to catch me. Gee, blood pressure high? 🙄

One thing I consistently find frustrating is when doctors hear I spend my day in bed, they shut down right there, end of story. I am a complete invalid, sickie. They do not listen to why I choose a bed over the sofa. Firstly, all of my stuff is handy in my room. Secondly, I can stretch out and work out whatever kinks I get when I have space. Essentially, every morning, I fold up the blankets so I have room to work. There is a reason my nickname is Hamster Girl!

Another issue, he seemed not able to grasp the concept my pain clinic was not fully looking after my needs. As of this point, I have only had one Botox Migraine treatment since June 2017, and no Botox in my body at all since June. Although controversial, the body injections helped me a lot, and I am hurting! (Side note: the pain clinic has sent out a note saying they will no longer be doing injections. I also remembered, in my last convo with my pain doc, he said he wanted to switch my pain pills as he felt they weren’t working, I agreed.) Anyway, as we were about to leave, I blurted out we needed a referral to a pain clinic. Any Pain Clinic! He obliged. (Oh! I didn’t receive the note yet, but was told about it because the old pain clinic manager called me, as they had a cancellation with the old pain clinic’s new neurologist for next week. I mentioned this to the EDS Clinic doctor with some of the symptoms and he was very concerned about my head situation.)

Another weird thing was, he asked me if I exercise, and I said I do stretches, which he said do not count. He only counts timed exercise. Well, I hate timed exercise. I told him I used to be very active, walking everywhere, and that doesn’t count either. He suggested I go for a brisk walk. I nearly made another suggestion, but we had moved on.

I always love it when I am told things that hurt ‘shouldn’t’. Like my Symphasis Pubis. I began laughing. He told me it especially shouldn’t hurt because my daughter is nearly 16. Great. I will tell it. WTF?

All in all, it was a valuable appointment. I completely agree that I am deconditioned and physio with someone competent would be amazing. I had a really good guy for a bit, but I was in too much pain to continue, and three times a week – I was too weak to even do that. I think this is even more gentle, more home-based. I’m slightly nervous, because the time before the good one, the physio was all “join a gym! Join a gym!” Not good.

I didn’t like that they were trying to goal-set for me. One doctor wants me to start pool walking by the summer, and the other doctor was “I want to see you run a marathon in five years! Ok walk.” I have no desire to do either of those things. Oh, and the male doc kept saying “you’re still a young woman!” Uh, more than 3 and my bullshit detector goes off. 😆

They were both really pressuring me to start physio now! Now! Now! I do understand momentum is important. But I am not certain they are understanding how messy my pain management situation is. Yes, it’s fear, too! I barely sleep because of pain. I am just hanging on managing my pain. It’s very complicated. I spent this weekend mostly horizontal, trying to stay home from the emergency room. That’s how much that appointment took out of me.

I can completely see they are right. I need their help. But I am scared to add on more without more pain support.

I have scored a gastroenterologist, a therapist, a physiotherapist, and pain management. Not to mention neurology. Here’s hoping that appointment answers some questions.

Thank you to everyone for all your love and support.

 

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!

 

 

The Migraine Dance

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I don’t really know what is going on with the back of my head, but it might be a migraine thing, so let’s call it an offshoot of my migraines for now.

I’m learning to dance with them. They are leading. I need to lie down when it’s time to lie down. Sleep when it’s time to sleep. It’s rather like having a newborn in the house, only I’m the newborn! Although I do like the idea of rebirthing myself. That may be too deep for my brain at the moment.

This does mean I’m keeping irregular hours. I did see my

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If we ever have competitive napping, though… I nap hard!

husband for a few minutes this evening, as I woke up to use the washroom as he was going to sleep. So much for my 4 hour nap. More like 10. I will sleep more. It’s 1 am now. By 2 I should be ready again. I need 18 hours every 2nd day.

I’m almost ready to plant myself at the ER.

My neck and back cracked loudly today, but the pain ended up intensifying in my neck. My back feels better. My toe feels like it’s healing, too.

I am supposed to be getting the Botox shots for migraine on the 24th of October, I think. The clinic can at least do that. I’m hoping that helps, because it did help a bit in June. I do tend to sleep more before my shots, as the pain gets worse and I’m 2 months without now, so I guess it isn’t abnormal for me, but geez, I would like to see my family.

Five minutes should be enough. 🤣 they’re teens!

I know this sounds like exactly the opposite of what I just said, but it isn’t. Those times I am awake, I am pushing myself just a bit to accomplish things. Blogging, putting on makeup, organizing this or that. At least when I’m sleeping I don’t feel like I’m not accomplishing anything, either. I’m trying to be awake between 6 am and noon, at least. It seems to be my best time, and I am happy I’m getting a few small things done.

Life. Still good. Bitchy as hell, but I have some great companions! 😁

My Super Hyped Doctor Appointment!

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As is apparent, I survived my doctor appointment yesterday. I had some mixed feelings about it, and needed time to process, but on the whole, I think I’m much better today. Emotionally. Physically, too. Let’s start at the very beginning where my happy alarm goes off at 6:00 am, my husband brings me coffee, and I start to look dazed.

First thing I grab my medication. The second thing I do in the morning when I have time is vape. I wasn’t going to have time today, so I should have used my marijuana oil. Vaping takes an hour and a half, start to finish. My therapist keeps nagging me because she thinks that’s too long for medicine to be consumed, it should go faster. Nagging me- she mentioned it twice. It still bugs me. I can’t control this. I didn’t remember my other medication – the marijuana oil – until we were partway there, but perhaps it helped with my sensitivity? Showing them how sensitive I truly am? I don’t know, I probably just screwed myself.

We dropped my son off at school, and proceeded to the hospital where we hung out. The doctor was only a half hour late, but we were treated to a bevy of overly perfumed women (really, don’t wear perfume in a hospital, it doesn’t matter when last you bathed) dramatically emphasizing how they were in the most pain of anybody! So Loud! I felt sorry for each woman in their own way. Each needed something they weren’t getting. And then I looked around and felt sorry for all of us, as I realized everybody had something they weren’t getting. And then the doctor called us in.

New, young, gorgeous, doctor this time. She had read all three volumes of my file and asked for update on the situation. We told her about the head pain. The neck pain, nausea, dizziness, having to lie down. The stomach pain. Just on the surface of the stomach. Did I throw a cyst recently? My pubic bone. My hands hurt, my joints hurt, my knees hurt, Things are not going well.

We discussed the effect of the pain, how it feels, quite in-depth. She wanted to examine me. This was going to be the toughest part.

I changed into my formal hospital wear, and my husband held my hands as she did a surprisingly gentle upper abdominal and lower abdominal palpitation exam. I didn’t scream, only major flinching around my lower right quadrant. It was incredibly sore. She did back off right away. It didn’t hurt so much then, but ten minutes later was …wow!

On to the pelvic. She did some sensitivity testing around my ladybits, and a modified pelvic exam. I’m usually screaming during pelvic exams, but there was no speculum involved. She said I was something that amounts to ‘not letting the horse into the barn’ (my words) and I should probably get back to pelvic therapy. I was teasing my husband that she was trying to tell me I was frigid, but he didn’t know what that meant. I had to explain. Cute.

Naturally, by this time, I’m not feeling too fantastic. We start talking about the weird headaches I was having. My husband volunteers that it was like I have these vertebrae sticking out, and she goes to touch them..

Bad idea!

This send a searing shock of pain up through my neck, up to my head and I cry out in pain. I think I scared everyone,  including myself. The doctor runs out of the room, embarrassed, leaving me to get it together.  I’m scream-crying, trying to hold on until the initial shock of having the top of my head blown off subsides.

I finally calm, husband helps me get dressed, and we wait.

The doctor comes back, apologizing, but saying the demonstration really helped. Even though she’s sorry.

After some back and forth with the Old doctor, where he threatens to cut my medicine down, because I’m on an awful lot, and sometimes too much isn’t good either, which feels like the new ‘lose weight’. I’m not on THAT much medication, and I adjust accordingly. I wish he’d discuss it with me. My husband is dismissive of this comment, but I am not. I feel like it’s a warning, but I’m just a paranoid girl.

I feel like he’s saying “if you bother me too much, you’re getting less medication”. Which is insulting, because hello, not a drugseeker, and we haven’t even discussed the problem yet. Fer chrissakes. It especially rankles me because I’ve been sucking it up for most of my life, pretending I’m okay, pretending I can get by, pretending it doesn’t hurt as much as it does.

After that bombshell, I just kept a straight face, and he continued his best recommendation was to continue on with the Botox treatment as planned, because it does so well for such a large part of me, we will try for a referral to a person who may do nerve blocks or x-rays of my c-spine to deal with the headaches. In the meantime, he is prescribing a compounded cream for my headaches that he said he thinks might help. I can’t remember what’s in it, but one of the things is ketamine. He said I could probably use it other places, too. Last night I was thinking about my abdomen. The pain is about an inch deep, if that. This may be perfect. Here’s hoping! It would be nice to not have to take something that has to traverse my system to work. (I know this enters my bloodstream, but it doesn’t need to go to the edges of the skin to be where it needs to be? But the brain… yeah, right, it’s been a long week)

So, we are just waiting for the magical compound to show up. I don’t know how my hair is going to like it,  but thank God for Olaplex.

The more I think about his recommendations, the more I think he is right, and I think he made good suggestions and I see how they are beneficial and applicable. The cream may be just the thing on my abdomen, as the pain only goes about a half an inch down, I’m excited to try.

We had briefly spoken about referrals to specialists, but in light of the EDS clinic referral, which is underway, I don’t know what will come of that. Does it make more sense, if that is imminent, to see their in-house people?

My memory is improving ever so slightly.  I feel like I’m at least over whatever cold or flu thing I had. I feel so much better than I did!

I spent the rest of the afternoon just flaking out and surfing the Internet and trying to stay comfortable. This morning was pretty much back to normal.

Have a great day, Zebras! 😘

 

PS. Just FYI, the reason I don’t use my family’s names in my blog is simple. I thought it might be too confusing for someone coming in in the middle to figure out which one was the husband, the son, or the daughter. I thought this would be simpler. Also, it gives them some anonymity when we go viral. 😁 I may slip up occasionally.  It’s not a tragedy to me. We aren’t in hiding.