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.

🦓

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.

Current Mood: Exasperated

Over the weekend, I managed to get a lot of rest in and my abdominal pain is resolving. This makes me question the cyst

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Current Mood in Action

theory, although, I did have a major bout of nausea last night, which is what I was looking for. It just sseems very short. These used to last a week or so, and this was a good two to three days shorter. Now, I haven’t had one in a few years. I am getting older, that may be a factor. My Mom was 11 years older before menopause really started, she said, so I guess it’s time for peri-menopause at the least. I should likely have my hormones checked. I’m interested in what my thyroid is doing. I’m pretty sure my GP has his eye on it. This is the major problem with having illnesses. Routine, important maintenance gets pushed to the side, often with the assumption ‘someone else’ is looking after it. I have so many things I’m chasing right now it isn’t funny!

 

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Not all, of course! Ha!

Anyway, my ovary whatever seems to have resolved itself, so I’m not being attacked from the inside, but my abdominal muscles, the whole of my abdomen feels like it was removed. Remember that doll, Skipper, that was pregnant? You could take her abdomen off? That part is burning fiercely.

It feels like someone has taken a blowtorch and actually removed that part of my stomach. I have no idea why. The surgeries I’ve had in the area are gallbladder and appendix, are they enough to cause that pain? Oh and two c-sections.

Once again, I’m back to eight days from my shots. Botox for migraines and EDS. So my back is aching. My low level

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Chris O’Dowd looks so much like my husband. Back in the day. He’s neater now. 😄

headache is ramping up, and my neck is really sore. I’m back to the nausea and headache and dizziness problems I had before. When I was in so much pain and couldn’t move, I wasn’t thinking about how ill I felt. Now that I’m on less medication and am upright and have peeled away a layer of pain I can feel it. The problem is, it’s not bad enough to be debilitating,  but it sure is bad enough to make me grouchy. I’m trying to be kind, but I don’t like myself on days like this. 😦 I’m watching some comedy and staying isolated to try to help.

Almost there!

It’s supposed to rain off and on this week, and that never helps. I’m going to play with some Maybelline makeup  #igotitfree through @chickadvisor. Pretty awesome. Then, a nap!

I am not going to have the strength to talk to people I think. I won’t be able to censor myself. I snapped at my son yesterday for no reason. It’s not fair. I’m too worn out. I’m trying to catch up on blogs, but it’s all I can do to press like sometimes. I don’t get there, some days.

No, wait. I did have a reason to snap at my son. But it still wasnt fair. I asked him not to come into my area while I was trying to fix a problem and he did anyway because he is autistic, and I am in pain but trying anyway. I made a mistake and apologized. He made a mistake and apologized. Better.

Okay. Need to conserve spoons.

Stay strong, Zebra pals! 😘

Bedtime Tidbits

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Have you ever had that sensation where you’re in bed, I’m usually staring at my tablet, and suddenly I have no idea what time of day or night it is. I have no idea if I should be getting up or going to sleep. Probably a me thing.

I spent another day sleeping. I started out having a normal day, then playing, but I got my foundation on and realized I was just too tired and dizzy.

Last night, husband and I were fighting to stay awake from 9:00. Our son wasn’t in bed and was pulling the ‘I can’t sleep’ but you’ve only been in bed for five minutes….routine. We were probably asleep by 10.

I said to my husband this morning I was finally rested enough to go to bed. I was just at the point where I could settle down, cuddle up and chat for a while, only to drift off blissfully.

So I did that this afternoon. Only alone! I’m still too tired to partner up again. Which is fine, there’s stuff going on, I’m just worn out today. It’s raining, that seems to have something to do with it.

I hope you enjoyed this bonus episode!

New Attitude

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I’m not gonna lie, the death of Chris Cornell has hit me hard. Aside from the usual fangirling, the man was only 5 years older than I am.  His voice is just something that moves me like nothing else. I’ve been randomly bursting into tears. But it really has brought about some changes and reflection.

Honestly, everyone, absolutely everyone has baggage we can’t

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Chris Cornell 

see. So why is this world becoming so very hostile? I truly don’t understand, but I am not about to be trampled any longer.

All my life I’ve tried so hard to be wonderful, to be accepted. To have friends. To be loved and nice and well thought of. What has it gotten me? Some truly outrageous behaviour by some people. 

  • A person I went to  high school with lectured me in front of a group of people at my 20 year reunion about what a stupid mistake it had been to marry my ex-husband.
  • My mother in law tried to convince my husband to take our two kids and leave me because I was sick. She was convinced he could find someone ‘well’ to look after him, because that’s what he deserves.
  • She also refused to have my name put on the car insurance for the car they essentially gave us because she didn’t want me driving it for ‘fun’. I wanted to be able to take the kids to hospital if need be. Husband threatened to return the car. I never drove it anyway. I’ve given up driving because of my medication.
  • My ex husband offered his business associates the opportunity to have sex with me in lieu of the money he owed them. I found this out years later. I was not complicit.
  • I chose a certain woman to be matron of honour at my wedding, she told me many years on another woman was so bitter about not being chosen she complained the whole time. Why did I have to know? I was friends with the complainer for another ten years before we had an ugly breakup where she accidently sent me an email saying ugly things about me.

So, my point is, if I’m getting this treatment after trying my hardest, why am I trying so hard? This is, of course, not an exhaustive list. I don’t know why I inspire such hatred sometimes. Such loathing. My good friend’s husband still hates me 20 years after I had to drop out of their wedding. I don’t think he gets that my then husband took every dime I was making and was alienating my relatives. I couldn’t go to them. I still cry at night over that.  Why do people seem to think I’m unaware of the stupid things I’ve done? Or maybe there was good reason?

I’m sliding into a mode where I can only do for me now. I wake up. I coffee up. Med up. Breakfast. Vape. Get some makeup. Why do I makeup? Internet likes? No. But it’s fun to show my work. I like to zen out. I can relax. Be creative. And I can touch a part of myself that doesn’t hurt. My face. It takes two sometimes three hours to get my face on and photographed. Not because I’m slow, but because I need to rest so much. I lie down and get my pressure regulated or rest my hands. Then I nap. Dinner, visit with husband, bed. Meds in there, interspersed. My kids visit. They’re pretty independent. They need me, though. Don’t get me wrong.

Frankly, the way I’m feeling, I could really sleep all day. Every day. But really, that’s no fun at all.

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EDS Awareness Look

My head and neck are still bothering me, and are really ramping up, in fact. Yesterday was bad. I did a makeup look for EDS awareness month, and I was so tired after. I wanted to post to the blog, but I was going to have a quick nap. Four hours. Probably best that I didn’t. It would have been angry.

I have been wracking my mind. If your relationships are all crap, you should really look at the common denominator. That’s me. I need to change something. Everyone can’t be a jerk, right?

I do have some very loyal friends, however. Don’t think my life is bleak and terrible. Oddly enough, they almost all seem to be nurses or have chronic illnesses themselves. I am constantly amazed at my husband.

I often wonder: do I not share enough? Am I not upfront enough? Am I too retiring? Am I too pushy?

But you know what? I can’t anymore. I just need to live. I will continue to be kind, as always. Respectful, of course. But I can’t work so hard anymore. I need to focus on myself. I need to focus on me. I’m project #1 right now. Family is second. I used to worry there would be nobody to attend my funeral. I can’t anymore. I can’t worry about my afterlife when I’m not even living this one. Such as it is. It’s mine.

I need to build it.

Have a great day, fellow Zebras! 😘

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My Kid and Me

I can’t believe my daughter is fifteen today! It’s shocking to me. It seems like only yesterday she was an actual infant. Or I was in labour for one of my 96 hours. They were trying to keep her in until she reached her full term state of 37 weeks, but since she was 7lbs 11 oz, I think she was OK.  Remember, I’m 5’8″ and her Dad is 6’5″, albeit skinny, so she comes by it honestly.

Pregnancy was tough. I had lots of aches and pains. I was exhausted. I hadn’t been diagnosed with Ehlers-Danlos syndrome yet, but had severe endometriosis. I had constant ligament pain and nausea. I lost 30 lbs in my first trimester from vomiting. (I had it to lose) I came home every night, had apple juice and cheetos and fell asleep. I craved nachos and orange juice (not together) so much, and I hate orange juice!

I had to go on bed rest for the last two months because I was suffering from symphysis pubis. I tried chiropractic, as they were the only ones offering solutions, but I had no idea about EDSers and chiropractic compatibility. He did get me into orthotics, which was amazing.

During this time, husband and I also got married! We had expected to have trouble conceiving, as doctors predicted, but nope! The plan was to try for six months and then start IVF right after the wedding, but that turned out to be unnecessary.

I started mini contractions on February 4th, every 20 minutes or so. Nothing major. By midday on the 5th we were in the hospital. 5 minutes apart. They needed to stop these contractions so daughter could stay in until 37 weeks or the 7th. So contractions were on and off until the 6th. Then they took me off the medications and let me go home.

The next day, Thursday the 7th, around 9 am, I was back with 5 minute apart contractions. They had me on the monitors for a while, but I wasn’t productive, so they induced me. I started pushing around 5 pm, and for about five hours. No luck. She was stuck. My pelvis, it seems, is quite small. So c-section it is. But I had to wait, because some lady with twins was in there before me. I was unimpressed and started screaming. And puking. The nurses told me to be quiet or I’d scare the other ladies. I said they should be scared! 😂 I calmed down after a bit and we moved to the operating theatre.

They tried to suck my little girl out with a vacuum, no luck. Forceps, no luck. So it was cutting time. I couldn’t feel a thing. My husband, super tall, is by my side, and he can see over the theatre drape. He suddenly turns white. I feel yanking. I ask what’s going on. He says he’ll tell me later. Apparently the doctor had my daughter by the ankles, was standing on the operating table, straddling my body, and yanking her out. Maybe this is why her legs are so long.

I spent a few days in hospital learning to breastfeed. I remember leaving her with my husband for the first time and crying as I went to the hospital lobby to get a magazine. It’s not that I didn’t trust him, but I didn’t trust anyone with my precious bundle. I laughed when he said he felt the same about me!

So, here she is, fifteen. I can’t help but think of all the stuff I got into at fifteen and think she’s far more straightened up than I was. Sensible, smart, caring. I am so proud to be her mother. She is my glory! One of my set of pride and joy. Love this kid.