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.

🦓

Disability Stories – My Mother-in-Law

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Let me preface this by saying I know my Mother-in-law isn’t truly evil. She just doesn’t think things through before expressing herself some  all the time. My husband had a fairly revelatory discussion with her the other day (Sunday, actually, beginning at 8:30) where we discovered she often thinks she’s being funny! Imagine!

My Mother-in-law is older than I think of most moms, in that she’s in her mid eighties. Her husband is nine years younger, and quite a hunk! Portends well for my husband’s aging process! Not only is my Father-in-law handsome, he is sweet as spun sugar. 💙

Now my Mother-in-law, I do believe, generally has the best of intentions, generally. I first met her after the breakup of our mutual relationships and when now-husband and I had just finished the ‘should we or shouldn’t we?’ dance. I think everyone knew this relationship was significant.  She served dinner on warmed plates, so fancy. She was trying so hard. It was sweet. It was my first trip to the Danforth. On Logan Avenue. Gorgeous neighbourhood. I’ve lived in Toronto twenty-five years, I’ve been on the east side maybe fifty times. Anyway, they were lovely. She ran around before I arrived removing photos of his ex-girlfriend. It had only been three or four months. They had been living together. They bought a house. (Oh, that really makes me sound like a home wrecker, but on reflection I do believe we were set up. It took me years to realize).

Things went well. July of 1999 husband and I moved into the top two floors of a house off of St Clair West near Oakwood. At this point I was dealing with just Endometriosis…except my thyroid started acting up shortly after we moved in together. I went from 190 lbs to 220 lbs in 5 weeks. Then another 20 lbs came on over the summer. By October of 1999 I was 240 lbs. Thyroid medication was the only thing that stopped the gain. We have no idea what happened.

Prior to this, my now-husband had drifted away from his family. Because of me being such a lovey-dovey nosy person who doesn’t know when to leave well enough alone, I declared this ‘strange’ (I was 29 and stupid) and encouraged him to get in touch with his perfectly lovely seeming family! His ex-girlfriend was much like my ex-husband. Very artistic, loves to be centre of attention, not really good with details. Which means both of our houses looked like trash heaps unless he at his or I at mine did something about it.

This is the scenario when I, a former go-getter have my first child, which was actually a fairly traumatic birth, involving a c-section, yanking, tugging, more yanking, THE DOCTOR GETTING ON THE TABLE AND STRADDLING ME, and finally her birth. Still no idea about my EDS diagnosis at the time. After this, I have a year off, nine months of which is pretty good, and the pain returns with a vengeance. (Things are hazy about this time, two young kids, pain, migraines, under medicated). I got my daughter into daycare and tried to go back to work, but I couldn’t.  I had my daughter in daycare in February, and by October I was pregnant. It was the only time I felt okay. He was born in June of 04. I had to put him into daycare as soon as I could. He was too active and my pain returned too quickly. Yet as soon as she heard about my pregnancy, my sister-in-law asked me “why would you get pregnant again when you can’t look after the baby you have?” I was gobsmacked. I muttered something like accidents happen, although he was no accident whatsoever. I assume she was referring to our decision to keep our daughter in daycare while I was not working. Not that it’s anyone’s business, but she really enjoyed daycare, and it was good for her. Plus, what’s wrong with her Dad? Is he a potato all of a sudden?

After both kids were here, both c-sections (where I actually got online V-bac counselling from Michelle Duggar, who was on baby 7?, hand to God!)  I was in a lot of pain. Here is where my Mother-in-law comes to my rescue? No…here is where my Mother-in-law sees I am not working. Probably assumes I have no income.* Sees I am slacking off on my household chores (My husband has this terrible habit when he is talking on the phone of saying “I’m doing the laundry” even if it is I who was doing the laundry.) And starts encouraging my husband to take the children and find a new wife. He is certainly young and good-looking enough, she assures him. (Why would he tell me this? My husband has Aspergers, it probably didn’t even occur to him I would see this as anything but ridiculous. He is incredibly sensitive, and has grown so much, 15 years ago he was a bit green, and we had babies).

To complicate things, husband decided to take our co-sleeping sprogs to sleep in the other room so I could deal with this chronic pain that was cropping up. Only he didn’t say that. He just left. I was sure it was because I was revolting. Or, he had the children he really wanted. He could go off happily now. My DNA is so Oooh speshul.  Haha! I was so crazy partly,

I had been prescribed opioids by my GP for pain. Whee! No not Whee! Like high. Actually, I was joking with a friend who has something… that lung thing… we’d be ‘lucky’ enough to be roofed at a club, I can see it. Picture it: *Hmmm, I’m actually not feeling too bad right now!* Lol! Back to the story: Hydrocodone, I think? Anyway, it was fine, I took my dose just fine, every four hours on the dot. HOWEVER patients with EDS tend to metabolize medication faster than the general population, and I am one of them. I am done with a 4 hour medication at 3 hours. Cold medication, pain medication, everything. So for almost a year, I found out fairly recently, I was spending that hour essentially going through withdrawal, how many times a day? That must have been the worst time of my life. No, I honestly can’t think of a worse time. Should there be an equation for this? My time with my ex was awful but it was extended, this was concentrated awful.

I know my husband stuck up for me to his mother, but she just wasn’t having it. I think it bothered me so much because I sort of agreed with her. Things got so much better when I got to a proper pain clinic and on to long-acting pain medication. Then life started turning around. We had a housekeeper for ages, but he could only do so much. Our kids have Autism, our daughter needs to see everything, she spreads her stuff all over the living room.

Hmmm. This was supposed to be about my Mother-in-law, and I guess it was, but it was a bit more winding than intended. 😄

I will have to follow-up with part 2, with some quips.

 

Have a good day, Zebras 😘

 

 

*My in laws’ 50th was last year, and my husband and I paid for the party, and his brother and wife bought them something amazing or something, they have exceptional taste, anyway, remember now, my husband and I have been married – it’s our 16th anniversary in October. Because my husband and I work for banks, we have TONS of accounts. Also because I’m stuck in bed, my husband has a private account his cheque goes into, then he transfers it to wherever, I don’t follow how it works. But he needed an account and couldn’t wait for me to feel well enough to get to the bank. Well, when he paid or reimbursed his Dad for party expenses, he wrote a cheque on his private account, not thinking of the optics. Well, he’s received two or three thank you cards and gifts, but they don’t mention me or the kids. I don’t know if I should bring my bank statements showing my pension and my disability payments, leave them lying around? Nah, they’d probably match up the account numbers. Ouch.

Return of the Porcupine

dk6cthn9wog2kMy husband and I have been referring to the pain in my lower right quadrant of the abdomen as my ‘porcupine’ for a while now. It feels like a giant porcupine is sitting there, as there is weight, and it doesn’t hurt unless you move. Then you have a stabbing, sharp pain.

My pubic bone is also back to aching. I’m tired. But I still feel pretty good. Better than I usually do. Because I’m usually aching all over, too. So, today I’m going to rest and see if I can’t prolong this winning streak! What a lovely surprise!

Yesterday I became curious when I ate lunch and became bloated and gassy again! A glance at the ingredients on the crackers reveals the suspect! Beet fibre! I’m allergic to beets! My husband knows this! I’m skipping them today to see if this helps.

My daughter is back at school, she seems better, still tired, though. My son is home again, still dealing with anxiety, I think. He has started testing for Autism, and is on the spectrum for sure. He is so precious, I worry. I know he has stomach issues, as autistic individuals often do, but with pain and sprains, I think EDS? I can’t help it.

My husband’s eyes turned red with irritation again. This time the eye doctor changed the glaucoma medication. We wait with bated breath.

I’ve had a blast playing makeup the past couple of days. I want to again today, but I should probably nap instead. I’m so torn!

My cannabis doctor just called and moved my appointment from the morning to the afternoon. They are always moving my appointment around. It is so irritating! My husband takes time off work so he can take me there. Then they change at the last-minute. If I could swan in anytime, I wouldn’t need the medication. Luckily, my husband took the day off this time instead of the morning. Only two people ahead of me, too. Last time I had to wait an hour and a half. It hurt. I was in tears. My old doctor retired to go into addiction recovery. Maybe now I will get someone who will stop trying to get me to cut down. I want this to replace my opioids, not the other way around. Plus, this guy was trying to shame me over my use! Having never used a vape machine before, sorry sir, there was a learning curve. I don’t exactly hang around with anyone who can show me. The stuff I threw out for the first three months was still green.

Anyway, I’m enjoying the heck out of myself. I’m puttering around, getting a few things done, but that nap will be coming up soon. I might even get a read of my book! I don’t know!

I hope you enjoy a respite as well, Zebras! 😙

EDS and Chronic Exhaustion

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Before I was diagnosed with Ehlers-Danlos syndrome, the doctors diagnosed me with Fibromyalgia. There are many similarities. The pain and tenderness in the muscles and joints, and the chronic exhaustion.

There are a couple of ways the exhaustion exhibits itself. On a regular day, I may just be slightly tired. I can usually get through the day without a nap. I might be tired toward the end of the day, but I can hang in.

A bad pain day will often make me more tired, and require a nap. Sometimes, I need to sleep to escape the pain. It’s just that unbearable. Going to the hospital doesn’t work, as I’m treated as a drug seeker, and I am very afraid of catching a viral infection. I usually rely on what I have at home for breakthrough pain and relax as much as possible.

Insomnia will sometimes creep up and keep me awake, and I spend weeks trying to get back into the routine. Sometimes it’s wp-1484030291327.jpgeasier, sometimes it’s hard. I usually need to rely on sleeping pills to get back into rhythm, but it’s always a good idea. I take melatonin to help me stay asleep at night, but if I’m up past 11 pm, I find I’m up for a long time. Usually, I think it’s pain, keeping me up, but it could be stress, adrenaline, or the occasional panic attack.

There is an illness called Sleeping Beauty Syndrome, where sufferers fall asleep for two to three weeks at a time and have a hard time being woken up. I joke I have a mild form of this, as every couple of months I sleep for nearly a week, just waking up to occasionally eat and use the washroom. I’ve done this for years.

If I go out to lunch or an event, I will definitely be napping when I return home. Doctor appointments, store, dentist, nap. The nap is usually as long as I spent out. Have to recuperate.

Yesterday, I decided to nap for an hour at 11. At noon I was going to get up at 3. I woke up at 6:45. I felt much better. Ready for more, though.

I’m sure my medication has a little bit to do with this. I have decreased the opioid to a third of what I was taking, so it’s better, but unfortunately I think it’s only a very small part of the equation. I believe the exhaustion is mostly from my illness.

I used to be constantly worried about not being well rested enough, but no matter how well I sleep or how much, I’m still chronically tired, so I give up on rested perfection and am just going to try my best.

Okay, time for a nap.