Adjusting

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This has been a tough week. I’m trying so hard to stay positive and happy, but I just feel so awful all the time. I don’t have much time where I can sit up before I need to lie down again to relieve the symptoms. I did end up sleeping from Friday evening -our whole family was in bed by 9 on Friday, until dinnertime. And then I slept this morning until 11. I hope it helps. My back is hurting like crazy, but it is probably related to the leaky spinal fluid.

I think I’m so upset because I am afraid. I am afraid things won’t get any better and I will be stuck not only in pain, but even more useless. Β I am trying to not dwell on this, but I need to get a certain amount out of my system. I am trying to appreciate the benefits of the relaxed life. There is the grand possibility I could be fine. God, I hope so.

I get very lonely. I don’t have much capacity to reach out or to be a friend right now. Online is so tough, I am often misconstrued, rightly so, I am so tired or not thinking about how my words are interpreted. I don’t get back to people, I have to run sometimes if I have to vomit or stuff. It isn’t ideal. Phone sometimes works, but my husband will work from home, and no phone for me! πŸ˜† or my face hurts so much. But that is a possibility. 😊

I’m trying to watch funny and positive programs on tv. There are so many things on tv I missed out on! Friends was so Great! Arrested Development was amazing! Bojack Horseman is hard for me to follow, and I need to decide on what’s next. I’m enjoying this.

I started reading again. Reading was tough for a while. I’m not certain if I was too jumpy or if I can only concentrate on short stories, but I just finished an excellent book. I will tell you when I can get the title. I can’t move just now. 😜

There are plans to change my medications, consult with this doctor, Β that doctor. But this all takes time. I am trying so hard to be patient. But I’m uncomfortable.

But when I look forward to my future, do I have 35 years left? 83 is a ripe old age (okay, we generally live longer in my family, but please) what am I going to accomplish in this time? This disease has already derailed my (sad) career. I cannot start anything in this condition. This blog is a major effort (of love!) Thank God I was able to have the kids I was told I would never be able to have or I’d feel like I had passed through this earth leaving nothing (ymmv). Maybe I’m just having an existential crisis all on its own. I’m prone to those. I have way too much time to think. My sister told me to “just don’t think about it” which is brilliant advice, but yeah, when you’re lying here in pain, your brain goes to dark places. It sucks. I’m working on it.

I was thinking about my friend who had told me early in the year that I needed a new doctor and the way they were going to fix me was without pills. He was right, in a way. But I don’t think I will be making the miracle recovery he expects. It’s not q-ray bracelet technology. If the blood patch works first time (unlikely) I need physio of between 3 and 5 years to be up and walking to where I would be enjoying time with my family. Not to mention getting on proper medication, etc etc.

I will be so much happier when I can at least lie down and not be hurting, you know? It’s bad.

Sending my love!

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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! πŸ˜†

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. Β 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,

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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? πŸ™„

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. πŸ˜†

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.

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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. Β 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!

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Drained.

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I’m going to take a couple of weeks off. I have nothing left. I’m completely empty of anything valuable. Β I’m not coping well, and I need to reevaluate some shit.

I need to rest. I need to get over this flu. I need to get warm. I need to reinvigorate myself. I feel like I’m sitting around whining. This is not who I usually am, nor who am I happy being. I need to take some time to reflect.

Things have been really complicated here for the past couple of weeks, and I need all my resources to refocus our family. I act as main cheerleader, and my distraction lately has resulted in a lot of problems with school.

I’m not happy now. I need to find out what might actually make me happy. It may be as simple as shaking the funk that accompanies flu. It may involve serious house reorganizing.

Will keep you posted.

Before December 1 if I am able.

Feel free to email if you wish.

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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. Β 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. πŸ™„ 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!

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