Revelations

giphy3

I’ve written so many editions of this blog where I have been feeling low, it is great to be feeling good for a change.

I have settled into a comfortable routine. I am up at 6 am, available for the kids as they get ready for school. I putter around until around noon. I am in bed, but I fold the blankets and put them aside so I can move around. I lie down as I need to, sometimes it’s ten minutes here and there, sometimes it’s a whole hour at a time. Between six and nine, I am definitely available for my kids, and they talk to me a lot! Once they are into their day, I am more relaxed.

After my afternoon medicine, I nap. Sometimes it’s right until 6:00 pm.  I am around for my family from when I get up (today it was 4:30) until the kids go to bed, usually by 9:00 (their choice) and then my husband and I hang out until the Sleep Monster comes for us. 10?

So, that takes care of getting enough sleep.

Other things I am focusing on:

  • Getting proper nutrition
  • I’ve been making sure I eat good food and don’t worry about weight gain
  •  Focusing on positive shows and experiences
  • Because I am stuck watching tv so much, I focus on more positive shows and not negative ones
  • Lowering stress
  • I have found some good apps to help me keep track of things, and I’m learning not to overload myself
  • Enjoying hobbies
  • Playing with makeup and crappy crafts are more important than they appear. They really help me relax. Organizing things is my kind of fun. 

So far, the results have been good. I am no longer constantly berating myself for not accomplishing more, and I’m having fun!  I still have body pain, yet it is discernable from my mood. In other words, I can be happy and in a good mood and have an aching back, and it’s been a long time since I could say that.

Adjusting

giphy2

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.  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! 😆 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,  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!

 

So Grouchy

giphy1

I have been thinking about posting all week, I have just been so grouchy, I didn’t think it wise. Everything seems to be irritating me. I don’t like this at all. Isn’t it just like me to be irritated about being irritated? 😆

My head is sore. It hurts almost constantly. It’s bearable when I am lying down. My neck has this sharp kink where it feels as if something is sharply out of place.

I have about three to maybe four hours in the morning, where, if I’m very careful, I can sit up. I need to lie down periodically, but I can get a few things done. I can’t screw around, and when it’s time to quit, if I delay I may have to rest tomorrow, too. It’s tough, because I’m easily distracted and really clumsy.

And oh, so tired. I’m thinking it was the three hour appointment, but we are ten days past that now, I should have my strength back. But I can’t accomplish anything much.

I’m reorganizing everything I can get my hands on, which does tell how stressed I actually am.

I am trying to learn to relax, although I have no experience in it. Doctors orders. I’m also trying to watch positive shows, humour, and be generally happy. It’s helping. I mean, I know I am irrationally irritable. I’m trying to keep it to myself and not inflict it on anyone.

This pain. I do occasionally have better times. Resting is my lesson.

On the plus side, I really enjoyed Friends and Arrested Development. I was working so much when they were on, I didn’t see them. I’m not certain what’s next… Archer?

Hope you had a Happy Valentine’s day!

A Piece of the Puzzle

giphy

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,

I Don’t Want to be a Pirate!

giphy5

…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.

 

Great News!

giphy4

My appointment with the EDS Clinic has been moved to Thursday! Yes! This Thursday! I am so excited I can barely breathe! Prayer works! Or being on the cancellation list! Or being charming, which the administrator has mentioned twice as being a factor in choosing me and my husband when cancellations come up. Which is very flattering, because I have been feeling like a gaping asshole lately for being so selfish and me-centric. However, I have only had enough spoons to get me through.

I have been trying to remain more positive lately, as one person suggested I not dwell on the past so much. I think that’s good advice. I don’t think that I was so much, but in evaluating, I am certain I wasn’t looking too far into the future. What do I have, really, to look forward to, personally? Let’s say I live another 30 years. That takes me to 77. Let’s hope my pain remains at this level. Oh, Lord, that’s depressing as it is. My grandmother is turning 97 this year, so 77 might be a bit wishful. Ha ha.

Of course, seeing my kids grow, my husband grow in his career. Die from stress, that will all be fun, too. (Joke) It’s fraught, but there are tons of things they teach me every day. My son takes physical therapy, and they are talking of sending him, ironically, to the EDS Clinic at Sick Kids. He hasn’t been diagnosed, but a diagnosis wouldn’t surprise me. He’s 13 1/2. My daughter has Aspergers, and the anxiety component is so challenging. She is so tough. So is my boy, actually. I spend a ton of time worrying about them, and deciphering whether my husband is actually trying to insult me, or if he’s just being autistic. He has autism as well, we just found out when daughter was diagnosed, only because they are exactly alike. I know he’s never trying to insult me, he just says things how he feels them and it sometimes sounds funny in words.

I’m rambling, sorry. Excited. Tired.

Once we find out what they can do for us, the EDS Clinic, I mean, then we can branch out and fill in the gaps.

Good thing we kept the wheelchair from my appointments, whenever those were. 😜

At The Bottom, Looking Up.

giphy3

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.