Impotent Rage

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I’m sure you can probably guess what I’m annoyed about. A certain POTUS is being a giant idiot, and I am having a tougher and tougher time dealing with it. Let me explain.

It’s fairly easy to put your head down when you have a chronic illness, and keep your focus on your needs, focus on your family, focus on your next milestone. There is not a thing wrong with that. I think that is a phase we all go through, and it’s a healthy thing to do from time to time.

When the election campaign started for the 2016 election in the US, I didn’t pay much attention. After all, I’m Canadian. I held a passing interest as the global citizen I had always been, but then I started to shift. The current POTUS started saying some pretty sexist things as he was campaigning. Then some pretty outrageous and sexist things. By the time he was on to Nasty Woman in October, I was firmly with Her, and there I have remained.

Fortunately, I received an invitation to Pantsuit Nation after the horror of November 9th, and met some amazing, passionate people who care. I’ve made some very good friends! I have learned so much.

I don’t talk about politics much here, because it’s not relevant: it’s not important. Not usually. Right now, though, I am feeling shell-shocked. I haven’t felt this way since right after 9-11. I feel like I’m wandering in a daze whispering why?

But that’s not productive. What is enraging me the most are the people who are ignorant of the facts, who are acting as if this measure wasn’t taken, no vetting would be done. What I must do is step away, inform myself with reputable news sites, and stay away from comment sections.

Where my heart breaks the most, is my friends in the US who have similar physical challenges. While I whoop it up in Canada with socialized medicine and medical marijuana, people can’t see their doctors.

Every time I think about it I start eating cookies. That’s not good either. Maybe I should nap.

Wait: I have a better idea! Movie time..Name it!

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Happy Monday! 😉

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I had a pretty darn good weekend! I managed to accomplish quite a lot, all while giving my carpal tunnel a bit of a rest. I mean, I assume it’s carpal tunnel. My GP told me it probably was years ago when I first complained about it. Now that I say this, it had to be over 20 years ago, and he didn’t even examine me. I really need to get this checked.

So, on Friday I received a Vox Box, which is sent out by Influenster.com. You get to try out things and review them on

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Playing with the vampy Bite amuse bouche in Whiskey,  liner in 044

different sites. I get to review Bite Beauty’s new lip pencils. They are amazeballs. On Saturday I was able to do some makeup try-on for my other blog after a nice long bath, and I tried ALL THE LIPSTICKS! It was a blast!

I woke up around my usual time of 10:00, dozed until 10:30, breakfast, coffee, vaping, bath. So I didn’t really get going until after 1:00, closer to 2:00. My son saw me in the early afternoon, and then came by at 7:00 and I was still taking pictures of myself! He must have thought… What the? But I explained that I rested, I changed my lipstick every few pictures so people can tell what it looks like! “Oooh!” He said!

Sunday was so productive! I was able to edit some of the photos I had taken. I caught upon some news during my morning vape. I love Sunday mornings, hubby makes chocolate chip pancakes! They are so good!

While catching up with things, I found out one of my newer friends is having a crisis. She had her heat shut off because she made an arrangement with the heating company or whomever and whoops! Not in the system! I know so many who are screwed over like this. Of course the CSR is lying to her because everything is recorded, but you can’t fight them. They have all the power, literally. So we got together and helped. It’s tough, because so many need help. We do make some money, but we are spending so much now, too. Son has two therapy appointments a week now, at $200 each. I go 2x per month, daughter should go every month. Then there’s living in one of the most expensive cities in the world. I don’t go out socially, so, save money there. Anyway, I just wish I could do more.

So, my daughter’s birthday is coming up, speaking of money, and we hadn’t bought her anything yet. I saw the cutest t-shirt I thought she would like, and then found one for myself, and then she wanted another, then one for her friend. They were starting at $12 USD, which is how we got suckered in. So we bought some adorable tees. Then I bought her some pants from the Gap. It’s one of the few places I can order online for her that carries tall. She is 5’9″ and wears a small PLUS she is all leg. She needed them. I had to buy myself some, too, as none of my pants fit me anymore. I ended up buying 2 pairs of jeans and a pair of ‘joggers’ although I wanted some pants. I can’t seem to find pants that are neither too casual, nor too dressy, and come past my ankle. Am I too demanding? No rips, no shiny, full length.

When I lost all that weight over the last 2 years, my pants didn’t seem to shrink much up until just recently. I went down two sizes when I ordered and they were still too big. One of the sizes I bought was a 16! I hope it fits! I am 5 lbs away from being under 200 lbs 😮

Sunday afternoon my daughter and I watched the Beware of Slenderman Documentary. I was so disappointed! It was really boring! It didn’t go into anything. I knew as much from skimming a couple of articles and reading a couple of links on Slenderman.  I do not have a huge knowledge of the Character, but I didn’t come away feeling like I knew anything more than I did before. My daughter left halfway through. The interviews with the parents of the girls involved in the Slenderman Stabbings were interesting, the testimony and interviews of the girls were interesting, but you felt it was leading somewhere it wasn’t. Ah, darn.

My boy spent some time with me both on Saturday night and last night. He’s a great cuddler. He said on Friday night, “if I got to choose my Mom I’d choose you a million times over!”

Hope you had a fantastic weekend! It’s supposed to be freezing here in Toronto for the next couple of weeks, so I am not looking forward to that! Hope you’re comfortable where you are! 😘

My EDS Hands

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As you can maybe guess, I am kind of in a strange mood today. Positive, but strange. Twisted. Amused. I slept yesterday afternoon for a good chunk. Three hours. Until my son came running home, pounding on the door because he lost his wallet and keys. Daughter refused to open the door, as she thinks he should get his keys out and open it himself (unaware he has lost said keys). Brilliant husband figured out son’s route home, called local convenience store, and voila! Found wallet and keys.

 

My wrists are feeling better today, but I will spend some more time in

Side view of brace for right hand, my thumb goes in that pink loop.

those cast-like braces. They help so much, but there is just not much to do with them on. I really need to be evaluated by a specialist. I may need one of those fancy thumb stabilizers.

I have finger splints,  as I have swan neck deformity of the fingers. I will post a photo of that one day. It’s not too gruesome to google. I find, though, the finger splints don’t relieve that much pain. It’s equal to resting. The brace or splint does do quite a bit more.

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Top view of right hand brace.

It’s going to be a low-key weekend. I will rest, wash my hair, maybe do some makeup try-on for my blog http://www.squidgesbeautyhaul.wordpress.com, but that’s it! Fun only. I won’t be posting, I will be resting my wrist. Maybe trying out voice to text.

I’m certainly feeling better than I was last week. Still in bed, at least I’m not crying, too! Baby steps! 👣

Rest

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I meant to have a two hour nap when I went to sleep at 1:00 yesterday afternoon. When I woke up at 10:30 pm, I was very surprised. I stayed up for a couple of hours catching up on email and Facebook, but easily fell back to sleep around 2:00 a.m.

My wrist and elbow are incredibly sore, I need to rest them. I was diagnosed with carpal tunnel years ago. It is so bad I can’t hold things properly. I am going to find something else to do today. But what? Read, nap, catch up on the myriad things I’ve PVR’d…☺

I’m pretty nauseated, but that’s typical. A bit more than usual, again, typical for Botox day 3.

Botox for EDS Day Two

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So here we are on day two. I fell into a deep sleep last night and felt like I had just closed my eyes when my alarm went off!

My right lower quadrant abdomen is so sore today! My son came up to hug me and I flinched so hard! My neck is really sore as I relax the muscles that were so tensed up all week. My back is still achy and I am praying the Botox takes full force this time!

I remembered just as I was falling asleep last night to ask my husband to put my heavy arm brace on me as he was coming to bed from brushing his teeth. That’s how tired and pathetic I was! He did it for me, he’s amazing! I don’t remember the end of it. My thumb is still really sore today, as is my elbow. I have to keep11s7ke7jcnxchs bracing! I need to ask for a referral again. When I was first diagnosed,  I asked to see a hand specialist. They set it up, but she retired. Nothing else happened after that.

The day after Botox I am usually tired and sore. Nausea kicks in. I am ready for a nap. I don’t think it will interfere with my sleep. There’s plenty exhaustion to go around.

I’m going to nap, have some snacks, and watch the HBO special on Slenderman.

I decided to start a second blog called http://www.squidgesbeautyhaul.wordpress.com. I love makeup, it’s my hobby, so I though I could have some fun with this. I just wanted to test it out for a bit and see if I have enough spoons, first.  This blog will be my priority.

There was one funny thing from the hospital yesterday I forgot to share. Husband was helping me down the hall to the lounge where I could wait for him to get the car. I was a bit spacey and wobbly as the treatment was emotional and painful. We encountered two women, older than we are, using walkers. For some reason, they are circling each other as if in some elaborate dance. I try to pass one, the other cuts me off. I get by the next, her friend is right there. It did not seem to be coordinated, nor did these women seem to know each other, but it took my aching body nearly three minutes to get by them, because they seemed to be the only disabled people in the world! It was hilarious,  once I sat down. People really need to watch where they are, honestly. They seemed like bright women, just without a sense of what was going on around them.

Then I was watching for my husband out the window, I had turned around in my seat, and a woman stands in front of me and sticks her bum right in my face. I could have taken a bite had I a mind to do that sort of thing. 😂 Thank goodness for winter coats. I was so surprised! I really don’t get out much, do I? Just then my husband came around the corner with the car, so I could go. Escape!

I must be a terrible human being.

Happy happy safe at home!

So.Many.Needles.

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My Botox needles, ready to go, taken a couple of years ago.

One of the things I do to help manage my pain is get Botox injections every ten weeks. Just like for migraines, which I am also treated for with Botox, at the same time.

So this morning I had to drag my ass out of bed. I was not amused. 😁 I was really sore! I wanted to have a quick wash. In fact, I’d wanted a bath last night, but that just was not happening. I was too sore. I tried to move today, and my back spasmed, so I asked my son for a warm cloth to wash up with so at least I won’t be smelly, and I get the third degree! Why? Does it have to be warm? Why? Ugh! He’s 12, it’s not like he’s a baby.

After I convinced him of what I needed and managed to dress, I was able to hobble downstairs. Must have been so funny to see! Me hanging on to husband and kicking my feet out trying to loosen my knees up.

We got to the hospital and our appointment, and there is a nurse? Social services worker? I don’t know who she is, but ugh. She’s not kind. She calls you to your appointment, then disappears from sight. She doesn’t even sort of wait for you. Then she waves you to the treatment room. Hm. Onward.

The doctor comes in with two new doctors who are taking extensive extra training in Pain Management. We talk about how fascinating I am to have Ehlers-Danlos Syndrome, diagnosed late, even though he had been seeing me ten years. Hm. Hm. Botox injections are tricky things, only work occasionally, hm.

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The aftermath of needles in the forehead

Hm. Lucky me. And I am very lucky.

Then we start sticking needles in my head. As you can see from the photo, he didn’t clean me up before sending me home.

After the front, we move to the back, and he injects some near my jaw, I think,  but truly I just spaced out for a while.

I know we then did some near my neck and shoulder,  being careful around my throat so I don’t stop breathing. I hear that can be bad. We continued to my lower back focusing on the lower spine area, and the top of the buttocks.

At this point I have to roll over. Never an easy task in a gown on a narrow slab of table. Now imagine you want to preserve some dignity.

Here is also where my doctor starts to show off. He says to PMDIW (Pain Management Doctors in Waiting) “she has an entrapped nerve and is very sensitive!” As he touches my pelvis, the right lower quadrant, and I scream. The PMDIW look horrified and blanche under their South Asian complexions. They look like they want to bolt. I don’t blame them. Doctor moves on. He terrorizes my pubic bone. My face contorts in a silent scream. Husband grabs my hand. The doctor injects me as I sob. I tell him to keep going. Husband asks if I want a break, but I don’t. It will just be longer, then. The doctor starts on my right inner thigh. He pushes a bit. I wince. He moves over. I scream. I quickly slam my hand over my mouth, conscious of where I am,  but it hurts so damn much. I’m just sobbing now as he finishes the left leg, worn out from the pain, spacey, tired.

The doctors all leave. Husband helps me get dressed. That not a nurse or a social worker comes in and asks if I’m okay but is gone before I can answer. I can tell she didn’t care anyway. I’m known as the screamer. They tease me that I’m bad for business.

One of the PMDIW wants an appointment with me next week to talk about how sensitive I am in areas. It doesn’t seem normal not to be able to touch someone in an area, like my inner thigh or my abdomen. So maybe we can do something? I can hope!

So, I’m sitting here semi-bingeing on sweets, while my dear husband naps beside me. It’s bliss! 😍

Missing Out

pbnvdadnhoya4 Today I had to miss my dentist appointment.  I haven’t been to the dentist in almost a year, and I really need to have my teeth cleaned. Plus I need to have a new bite guard. I’m terrible with grinding my teeth. But, I am just aching too much, and I can’t do the flight and a half of stairs to the office. When I first called to make my initial appointment, they told me they were accessible. They are so good, though. And they do wonderful things like hitch me on to my husband’s and son’s appointments, so if I need to cancel it isn’t a big deal. The dentist also knew about EDS, and has knowledge of current pain management techniques. He’s so good!

My wrist and elbow have been really been bothering me lately, and I finally put on my arm brace overnight. The big, heavy one made by the physiotherapist. The one that goes from fingertip to just before my elbow, and I feel so much better today! Some days are smarter than others. But sleeping in all that junk is tough. I don’t know if I could sleep in both of them.

Husband has some vacation time to use up, so he took today off. He usually uses his time to take us to appointments, so he was surprised by extra time. I feel awful that I slept all day. Poor guy was so bored! It’s good for him, though.

My marijuana doctor has decided to move to another area of care, so I have to start with another. I’m nervous. I can stay with the practice, but it is somewhat inconvenient to get to, and it has an air of being for-profit. But can we get away from that? I see my Pain Management doctor tomorrow, so we need to talk. Also, husband has mentioned that if I say Botox isn’t working in my back, they may discontinue it altogether. This would be disastrous. Right now I consider myself to be coming off the Botox. I can barely move. When I have some in me, I get at least 6 or 7 pretty good weeks. I’m not out dancing, but I can occasionally do stuff, more so in summer than winter. But to lose it would be devastating.

I will need to tread carefully.