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.

 

At The Bottom, Looking Up.

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I’m trying to stay positive. I want to be positive. But my body is revolting (joke). I have never been in this much pain before. If you remember, I haven’t had any Botox injections in my body since last June. This was a treatment I had been having for 11 years, every 10 weeks. I have also only had one migraine Botox treatment since then, October. So no relief from the neck and head pain or migraine pain since then.

My sleep is terribly fractured. Pain keeps waking me up. My current doctors don’t feel qualified to prescribe what they feel I need to help with this. I did sleep for 24 hours Friday to Saturday, so that was amazing. I did have to take a bunch of medication, still within my prescribed plan, to get there.

There’s a bunch more, but it’s a bore. The meniscus in my knees have gone. I would love to watch me walk as I dash to the washroom, because they are popping in and out like crazy. It must be hilarious.

The point is that I will be incredibly fresh when I get to the EDS Clinic next month. I will have had no treatment since October, just my meds.

I’m like a goldfish right now. I try to keep thoughts in my head, watch upbeat shows, save my energy for my husband and kids. I cry much of the time. I don’t even realize it, but the tears are there. Pain. Exhaustion. I don’t want to sleep through life! My kids seem to be doing quite all right for the moment! It’s really new, so I am crossing my fingers.

I play with makeup a lot. Although it will take me 3 to 4 hours what should really take 45 minutes. Distracted by tv, Looking for stuff, what was I doing?, oh yeah, that brush…

One of the scariest things is that I’m getting pins and needles down my arms. I can’t feel my fingers that much anymore, my fingers are all cracking and cramping. They become more and more useless. I have to figure it out, but I never have the strength to. Or I never remember when I’m at that moment. Grrr! I even keep a notpad to write things down, but I haven’t captured it yet.

My husband is being wonderful, as usual. He has been baking gluten-free brownies every week so I can have them with my evening medicine. My gynecologist put me back on Visanne so maybe we can stop some of the cramping. Yay! Acne and weight gain! I’ve put on 10 and taken off 2. I had been hitting the chocolate pretty hard over Christmas.

Anyway, I’m getting pretty tired. Hugs to everyone going through same or similar. When I don’t have energy for makeup, I have been making some crappy crafts by covering old containers with duck tape. The decorative stuff they have out now.  I will try and take a photo of some projects if I can. They aren’t gorgeous, but they keep my hands moving. It’s something to focus on, other than what’s hurting now. It’s good.

Happy 2018!

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The new year is starting off pretty well. The EDS Clinic called yesterday and notified me of a cancellation. My appointment has now moved from April 5, to February 22! Yay!

My sister was here to visit for a couple of days. She is 20180104_080853.jpgteaching English in Beijing with her husband. I haven’t seen them in two years. Of course, I was just getting over that flu/flare-up I was dealing with, so we just sat in my bed and chatted, but it was freezing here in Toronto, and most of North America, so going out wasn’t high on the list.

My sister brought me so much cool stuff! I will show you some over the next little while. I didn’t think of this until now, and loading photos after text is nigh impossible if you are slower than Usain Bolt. 😐

I am kind of glad the holidays are over. I love Christmas so very much. It is my favourite time of year. I love buying gifts and the family get togethers and being with everyone. I love the cold weather and being indoors and snuggly! This year was wonderful, however I ate all the bad foods and I am so uncomfortable. I am constipated and have horrible acid reflux. Oh, fodmap! I run back into your arms! My skin is all broken out – which rarely happens, so I know I need to get back to my regimen. To think, some toffee can cause such havoc!

I have an appointment at home with my cannabis doctor on the weekend. They are charging $75 per visit, which is only slightly more than taxi fare which is about $60 round trip. Driving is out of the question, as my husband would have to park blocks away, I don’t drive. I’m too wobbly to park and escort, and there is no place to leave me in the lobby… this works much better. I get so sick in the car as well. Then on Monday, I see my gynecologist and my sleep doctor. They are in buildings right next door to each other.  I’m going to be tired!

Both my sister and my husband helped me clear out the clothes that don’t fit anymore. I have a few more to go, because I have kept everything as I have changed sizes, but not anymore. I will buy new if I change again. I have kept a few oversize things, but I feel like I have stabilized. I haven’t weighed myself all month until yesterday and I have only gained five pounds, but within my range – it’s probably waste material, anyway. I don’ t fuss as long as I am in my range – within 10 lbs.

I was supposed to see my sleep doctor if I lost or gained 20 lbs. I use a CPAP machine, when I went on it I was on a huge dose of narcotics, and since I have lost 120 lbs and decreased my dose of that medication by a lot, so this doctor will be surprised. I wonder if I still need the CPAP?

Wishing you all the best in 2018!