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.

🦓

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!

Waiting for Results

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I had the MRI as planned last week. They had to redo a portion of it because I was moving, but I was in so much pain I couldn’t be still. My back was just so sore, being flat. Somehow this is affecting my back, and this pain is the worst pain. It almost affects me more than anything.

I played with makeup for a couple of days. It was tons of fun, but a bit of shadow kept falling in my eyes, as i had to do it lying on my back. I’m resting today. I haven’t seen my husband since yesterday morning because I have been asleep. I was awake all weekend, so I need it.

I am so weak yet so hungry. My body is gearing up for something.

I may be a bit less frequent than usual. I don’t have much energy these days. I only seem to have enough to buy scented candles. And makeup. But that’s not hard. I’m going to try going on a no buy tomorrow for the rest of the month. We shall see.

Exhausted.

The Next Day

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My husband evaluated the situation yesterday, I just love his logical Self! ( please allow me this apology. My predictive text is really obnoxious, and I can’t fight with it today. I simply cannot. I am so sorry for the weird capitals, or not, or apostrophes they insist upon)

So, my husband and I went over what I had taken, what I had, and came up with a good mix. Within about 20 minutes I was much more comfortable, and even a bit loopy from finally being out of pain. (Which is different from being stoned, because it all really hadn’t kicked in yet.) I was still well within my range of my prescriptions, which is awesome. There is this magic cream the doc prescribed that really numbs things up. It’s lovely, and I always forget about it.

After the lovely medicine started to kick in, the most embarrssing thing happened! I picked up my tablet and started to read, as I often bookmark things for myself this way, and the blog I was reading… I thought ‘This poor woman!’ Oh, Lord! It was my own blog I’d just published! I did notice after a couple of sentences. I  need to reign in the pity party. 😆

So, my bath was gorgeous.  Fantastic. I loathe getting out of the bath, as I am always so cold. But. I survived. Hair washed. Slept amazingly well. It was tough, but I fought to stay awake yesterday, so there would be a full night last night.

This morning I received a call for my MRI. It is on Thursday.

I am still very tired today. I’m cold. Sleepy. My back is intensely sore. I think I should focus on rehydrating myself. Staying warm.

I thought I’d play with makeup today, but maybe later. Or tomorrow…

Priority has to be maintaining good function first.

It is amazing to me how dumb I have been, distracting myself from all the stupid important stuff going on with my body, because it’s scary and intense with all of the unimportant minutiae because it’s easier and self-perpetuating. It’s time to human up.

Stay snuggly, my friends!

Letting Go

 

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I’m likely having a flare-up. At least I assume that’s what is going on. My brains are currently pretty scrambled. The pain is pretty intense at the moment, and the pain medication is taking the edge off, but not much more. I continue to take it, don’t want to deal with withdrawal or anything, but it doesn’t really make much of a difference.

Sorry, bit of a pause there, my husband came upstairs after his weekly call with his parents to check on me, and I got some medication and rub. That was nice. I’m slightly more comfortable, but not too much. At least my neck feels not quite as sharp.

Husband and I had quite a row yesterday. No. Wait. I had a tantrum. That’s better. I’m not doing well with accepting that I need as much help as I do. He is a bit overwhelmed with his own duties and obligations and didn’t see that I had not eaten and had missed my medications too long. Yesterday morning I was trying to take my morning pills, but I kept dozing off from pain and sleepiness. I’m usually pretty vocal about my needs, so he doesn’t always babysit me. It blew over quickly, though. We spoke honestly with the kids about how we did things badly. But this was the outcome. I spoke about my trouble accepting help, but I really need it right now. It wasn’t positive, but I think we moved on in a positive way.

So that help thing. We don’t have any help in the community at all. Besides professionals, we just don’t have anyone we can rely on. It’s just the four of us. As I’ve mentioned, our kids have learning disabilities. Our daughter, Aspergers, our son, a processing disorder.  Both of them are in counselling and support twice a week, and have severe anxiety issues. I feel really awful asking for anything from my husband! Although he gives so freely!

Anyway, I realize I just need to trust he will tell me when he has had enough. I have gone two weeks without a proper bath and I just need to suck it up and do it at midnight if we must. Despite our daughter, newly minted 16, shushing us for being too loud at 8:30 last night, Saturday. We are a party crowd.

The luxury of sitting up has been whittled to a few minutes at a time. The nausea and back pain is ever present. I realize now I must let go of a lot of things I may have wanted for myself coming up. I really need to focus on myself right now. This is not something that comes easily to me. Sure, I can do face masks and things, but to really rest without distraction is tough.

I need to let go of worrying about what people think about me. So much of my life I was taught that other people’s opinions were paramount, and it is my duty to micromanage those opinions. No wonder I’m so tired! There are certainly a lot of people who dislike me, I think more than the average person, but I need to just stop trying to dissect what is wrong with me and live my life. I need to chalk it up to being a psycho magnet, as we used to call it back in the day, I know I am very naieve and have made some very bad choices in friendship, and I know a few enemies were made due to people ascribing me stories or characteristics which don’t belong to me at all. Many along the way seem to have this idea I’ve lived a perfect life. I’m some rich kid. Ha! Bizarre. Anyway, I really do need to stop looking back at my life from others’ perspective because it doesn’t serve any purpose, but damn, it’s fascinating.

I need  to accept help. I need to stop with the caretaking. Do you know I was actually thinking of posting on Facebook that it would be okay to unfriend me, it wouldn’t hurt my feelings? I mean, people are kind of acting like I run around and punch them in my sleep, or make horrific posts…wait, I should go check that. I won’t share my health updates. I guess. Maybe. I dunno. I’m just back using it again.

I’m thinking I may play with makeup lying down one day. We shall see how that goes.

My son came into my bed this morning after my husband got up at 6. It was lovely. He had me so relaxed just by wrapping himself in his blanket beside me, putting his face close to mine, and stroking my cheek – I fell asleep! I love that boy! (My girl just as much!)

Ok, perhaps a warm bath would be good. I don’t know. I’m still so uncomfortable. It’s not quite sharp pain, I feel like I’m being squeezed by a boa constrictor. From my cheekbones to my hips. I need to relax, but I don’t know how. God, I think I may have to go to the hospital if this doesn’t let up somehow, or I find something that helps. I’m at least calling the doc tomorrow. Or having my husband do it. Ugh, having indigestion does not help.

Oh, sitting up feels so much better.

I will keep you posted.

 

Great News!

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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.

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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.