Three Weeks Later…

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The past three weeks has been filled with trying to get my kids to pass and finish their respective grades, having them prepare for summer school, dealing with the first week of that, ushering in the purchase of new beds, and trying to facilitate the angst though the purchase of all new appliances.

My husband does not like change. He will put off purchasing anything until he absolutely must. The beds, for example.  Our fridge door is being held on with scotch tape. Dishwasher is broken. This must happen. I have no involvement with the kitchen, so it doesn’t bother me. He has things chosen, it now is having things picked up and hooked up, which is a huge chore. He can’t take all this time off and look after me.

The new beds, however,  are fantastic. My neck hurts less. Actually, I hurt more, but it’s not the bed’s fault!

Once again, with a whole new crop of doctors, we have to play around again. When I first started at the pain clinic 11 years ago, they put me on an opioid. That was standard practice. I am still on a bit of that opioid, and I’ve been trying to get off it for three or four years now. My pain doctor would say next appointment. Then that appointment would be in six months because that was first available, there would be 10 pressing matters to discuss,  then it would be… next time.

In the meantime I go on marijuana oil and a marijuana derived pain supplement. Fine. Everything is good. I’m okay as long as I don’t move too much.

My migraine doctor sends me back to my pain doctor saying take me off the opioid. At the same time, the marijuana pain pill is going out of stock. These two make up 62% of my pain relief. My marijuana oil only lasts for 5 hours at a time.

Now, my husband manages my medication.  He takes it and puts it in the weekly boxes for me, so I don’t know how much I stepped down, but before long I was in agony.

Now, those without Ehlers-Danlos Syndrome, and even those with, because everyone is different, right? The way mine works is that if my spine goes out-of-place, all of my muscles immediately tense up so nothing else gets ‘damaged’ until we get help. My stupid, well-meaning body. With my pelvis doing whatever nonsense it’s up to, my whole pelvis muscles tensed up, including my back. We have been trying to medicate them down ever since. Yesterday, we or actually, he gave me a booster: which is a smaller dose of medication set aside for emergencies allowed by the doctor. After that, I was able to sleep from around noon, to my regular time this morning. Previously I had been sleeping in two to four-hour chunks. I feel its much easier to cope. Like I’m able to.

I’m so frustrated with these doctors, though. What were they expecting? I was just supposed to stop everything? That I am actually not in pain and am doing this for fun? Honestly, the way people have been treating me. I might just break.  I don’t want to be on opioids. I don’t want my kids to hear me screaming in pain, either.

My migraine shots are coming up. I’m hoping that will help the face pain. I was talking with the other doctor about the pubic bone pain and he asked if my migraine doctor would be willing to shoot me with botox in the pubic bone.  So that’s a fun conversation I get to have. Although, last time I did compliment her on how smooth her legs were and asked if she waxed or shaved. ☺ I think I was completely giddy with pain relief.

Why do people think they already know what I think? Nobody ever asks what I want.

Someday someone is going to treat me like a person. Scratch that. My Migraine doctor is great. The office staff looks after me very well. It’s mostly the doctors who don’t know what they are doing and people who are rude in general. But those people still don’t see me as a human being.

The way things are as of now, I am completely off the marijuana based pain pill, as it’s out of stock at the moment and I have no choice. I cut down a bit on the opioid, but I need to stay where I am because I am hurting at an 8 or 9. I  am waiting to see the doctor who is supposed to be seeing me for this. I had an appointment last week, but was too sick. Imagine. Still taking the marijuana oil. It’s helping me through. I do have other medications, but those are the main ones for pain.

The physiotherapist is ready for me. My last two physical therapy experiences were:

1. Lose the cane and join a gym. For this, $125

2. A guy who couldn’t figure out why my legs were so unresponsive. Duh, I was full of Botox. I can’t be smarter than these people. I can’t.

Looking forward to this. 🙄

I will let you know if anything changes. First I want to walk without blacking out. Then physio.

🦓

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.  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!

 

Rough Time

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We ended up, finally, with a couple of inches of snow this morning. My kids, or maybe one was my husband? Were kind enough to send me photos.

I’m in agony. I was whiny yesterday? Ha ha! I tried to stay moving so I wouldn’t stiffen up. Today, I am like Frankenstein’s monster. I have nearly no fine motor skills. I crash around like a huge boar.

Something strange happened this morning. I took my medicine, the marijuana oil, and a while later I felt better. I had been lying still, but I felt dramatically better, and just a bit loopy and nauseated. Did I accidentally take my medicine twice? I feel really good. Just sick. Oops! Then I was ill, which happens so often we keep kidney bowls nearby. I just coughed up some bile. I had to use the washroom. As soon as I went to stand- oh, yes! I had the correct dose. It is very strange for me to do things out of order. But if I had doubled my dose, I could not be in THAT much pain, I am fine. So I hobbled back into bed, and finished a couple of errands I needed to do.

On days that are not so intense, I can keep moving, even if I don’t walk around much. This means my back doesn’t hurt nearly as much. On days when the pain is head to toe, though, there is just no way to deal, except to get through it and recover and piece myself together on the other side.

I am so glad my family is understanding.

My lovely cousin was stuck in town at the airport this morning, when I was at the peak of my stoned-ness, (?) Or whatever was going on there: trying to relax and not cry. She messaged me, I know she could tell I wasn’t myself. I hope I didn’t scare her!

I’m sure it will alarm at least a couple of family members to see me. Over the last three years I’ve lost 120 lbs. Mostly due to gastroparesis, but I know this will be universally ‘positive’ however losing as much as 40 lbs in 3 weeks due to vomiting is not the right way. My body just rejected food. It was horrid. I’m straightening my lovely curly hair because I lie down so much the curls just get crushed and become difficult to manage. That wheelchair we will be investing in. I’m falling so often from my knees giving out, and don’t forget that damn exhaustion!

Ah, well.  Speaking of exhaustion, I am going to have a nap, as I haven’t been sleeping well. I just got a new onesie from Torrid, it has Hello Kitty on it! Just some sleep and when the weather breaks, I need to wrap some gifts. I do this every year. I shop, forget what I buy, my husband hides everything, and when it’s wrapping time, there is a mountain of things!  Ah, its usually small stuff. My daughter’s usually a good helper.

Okay! Gotta nap this out! My lower back, oh wow! Can they do transplants yet?

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! 😁

Remember Me?

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Hey everyone! I’ve spent the last two weeks freaking out over this past weekend’s beauty convention! It went over very well, and I’m hoping to soon have a cross-post up between my two blogs about my experience.

I was very nervous about this weekend because I purchased the tickets for me and three friends in March when I felt fairly well. With the head and neck pain I’ve been having, I wasn’t certain I could endure the entire weekend.

Add to this, I had my BOTOX injections and broke a crown on my tooth and had to have dental work done. Ugh.

Oh, I missed this story, so on the day of my BOTOX injections, there is a volunteer in who isn’t the usual. She comes in the lobby and calls for Diana. I ignore her, that not being my name. She then calls Diana with my last name. I figure it out. I stagger over, followed by my husband. I apologize for not answering to the wrong name before, being the Canadian that I am, and educate her on the correct pronunciation of my name. DAH-nuh to rhyme with banana. She gets all put out. She goes to the file and starts whining “Well, it’s just that we have four names here for you!” My husband goes over and asks what they are. She’s referring to my first, middle, maiden, and last. The only one I don’t use is my middle. And there’s a short form of my first name I use. So she lightens up a bit.  Then she comes back and want to know if she needs to fill all the serum, if we use all six vials. I told her yes. As we’ve been doing this for three years now? Maybe two and a half. She then says, I don’t know, it’s kind of a lot… And then looks to my husband for validation. 😠 She comes back after with another administrator, and thusly begins calling me Dayna for a good five minutes. I won’t even mention her mocking my husband when he went to get me up when he thought the doctor was ready for me but he wasn’t. I will send a note, though, to patient relations. Yikes!

Back to the convention, so after my BOTOX, I had my tooth fixed, went home, rested up and was really anxiety and pain ridden, and I couldn’t figure out why. I was angsty and stressed and such a mess. But then, as soon as the event was over, as my friend got in her car and drove away….

My throat began to hurt….my tongue began to swell…my lymph nodes are swollen and sore. I couldn’t sleep my tongue hurt so much last night. I’m glad it waited, that was kind. I do need to have my husband book off work to take me to the doctor. I can’t go alone. I get really upset and stressed when I’m sick. Sometimes even before I know I’m sick. It started in my 30s. It’s almost as if I am afraid to be vulnerable. I remember one day being so ill I could hardly walk I had such a cold, but I had decided I had missed four days of work and that was it, I was going in. It didn’t matter it was 8:30 at night, I was needed! My husband talked some sense into me, but I get so irrational.

A couple of conclusions: last time I went out socially was last August. This isn’t acceptable. I need to get out more, as does our daughter, so we do not have this much anxiety.

The world certainly treats you differently when you are thin..ner. I’m not quite thin, but I’m thinner. I’m about 60 less than last year? Wow. Last year someone asked if I was my friends’ mother. That’s the one who spoke to me. This year? Compliments and chats and nobody speaking to my carer (pusher? 😁) first…well, mostly…. but that’s a story for later!

There were actually moments when I didn’t notice my pain. I feel miles better today, spiritually, anyway. My mouth hurts. I’m thinking strep. All that turning of my neck may have worked out some kinks. Now, I’m far from sprinting a race. Much of this is because of a good medication balance. I did have two pretty scary incidents where my knees just buckled under me. My friend who is a nurse thought that was pretty cool, I think, except one was on stairs. It’s that with no meniscus, it feels like one bone goes one way and the other, well… I also had my fingers go out yuck. But in the grand scheme, I will take it.

I will try to get that post about my experience together, and I will let you know!

😘

Irreplaceable Me

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How many days has it been? A million? Ugh.

I’m so bored. All I can do is sleep and sometimes take medicine. I’m way off my routine, I’m not sure what I’ve taken on time this week. Actually,  I’ve mostly missed my 3:00 pills and my mmj. That should be it. My 6:00 a couple of times. But my husband has been getting home earlier and checks now.

I’m seeing the doctor tomorrow! Husband and I are making our list tonight of what we have been seeing. I’m not going to let him bully me into hoping things will get better. This has been consistent pain now for months. I don’t know that I necessarily need more pain medication, but I likely need more investigation into what is going on. This ‘it’s just eds/endo/fibro’ stuff isn’t going to work anymore. When I’m losing use of my hands, when I can’t eat for several days (usually when I have the flu I can take something in without the digestive problems I’ve had. I woke up this morning to find myself on the toilet, so, yeah, ew.).  I want to get this neck thing straightened out -literally! My knees, these damn headaches, the list goes on.

The positive side of things is that I’m reminded how valuable I am to my family. My son turns 13 on Sunday, and my husband has been admirably juggling everything, however the gifts had not been bought. That’s usually my domain. When I have a flare-up, I can still often get things done. When I’m completely out of commission and can do nothing but sleep? Then we have a problem. Then we start to see how not having Mommy around affects us.

I woke up yesterday evening around 7:00 to find my son hovering at the foot of my bed. He hasn’t been diagnosed, but he is definitely on the autism spectrum, and he was doing a little dance of impatience with hand flapping as he waited for me to wake up. As soon as I opened my eyes he dove into my bed and exclaimed he was waiting for me to wake up because he wanted a snuggle. He settled right in beside me, and we watched TV.  It was lovely.

It’s good to be needed.

These are the sleep shorts I bought at Old Navy. I bought 2 pair 20170606_201735of shorts, I think I have 3 complete pajama sets, as they have camisole to go with them, a romper, a strappy top, and a pair of socks all with the zebra pattern on them.  I will take a photo one day when I’m wearing them, once they are all washed up! It’s nice to buy from the regular size part of the store. There are so many choices!  I’m almost redoing my wardrobe. I have so many clothes to get rid of. I don’t ever want to get big again. But we can’t always control that stuff, can we? My biggest things are not eating when I’d rather be sleeping, because sometimes I just eat to keep myself awake, and keeping an eye on my sugar intake. When I eat too much sugar, my weight skyrockets. When I stop, my weight drops at 2 lbs per week. Magic.

OK.  I’m tuckered out. I have lots to do for tomorrow.

Have a beautiful day, Zebra friends! 😘

…as a Kite! 😄

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The pain has not subsided in any way. I’m just lying here, taking my breakthrough meds as prescribed, and trying to hold off going to the hospital.

To answer proactively,

Why I don’t want to go to hospital:

  • It will greatly upset my kids, who are currently struggling with anxiety.
  • I do not think there is anything they can do for me there that I can’t do for me here.
  • If it is, in fact, a cyst, I am not having surgery, they will just send me home anyway.
  • Anything that is wrong with me, actually, they will drug me up and send me home.
  • I have more suitable (not better, granted) drugs here, until I really can’t take the pain.
  • I will be more comfortable here no matter what.

So, this is why I’m trying to hold out no matter what. I’ve been through this before, and it isn’t fun, but it’s definitely surviveable.

My husband is working from home today, so at least I feel protected. That’s not the right word… 🤔

Enjoy your day, Zebra friends! 😘