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!

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.