Braces Galore!

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This looks pretty strange, but it’s called the Turtl travel pillow, and it is so comfortable! I have a couple of pillows to give me neck support, but they are the traditional travel pillows. This one has the support in the front, or to the side if you prefer. I was considering a neck brace until I see the doctor (I have no idea what the hold up is). But was afraid of injuring myself further. This seemed a nice compromise, and I have had a lot less pain!

$34 Amazon.com

 

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I found these knee sleeves. Available in 3 sizes, they come in all four colours. Naturally, I bought the first set, made sure they fit, bought the second set.

What I like about these is they don’t have any specific compression seams on them. Most of the items I found have seams along them designed to support your patella and offer extra support and compression. I don’t need that, and I find extra seams tend to bother me. Plus the extra pressure tends to slide my knee out of place.

$16 Amazon.ca 4, one of each colour.

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I bought two of these elbow sleeves, similar to the knee sleeves, they have no stitching on them. Unfortunately, they are too small for my fat arms. I’ve ordered two in extra large, they should be here Friday, even though the guide suggests medium. Braces are tough to fit. I’m 5’8″ and 193 and I just get the biggest in everything. I actually have fairly slim legs, but I guess with swelling etc. And the fact I’m not wearing this for merely a workout, this must make a difference.

About $16 Amazon.com

 

I have a couple of braces for overnight for my wrist, and a hard brace for my arms, but I’m thinking of a soft brace for my wrists, as they get so sore.

One of the advertisements had a waist trainer for back pain. I was wondering if that would have any value at all. It was a legit brace company, and didn’t look like a fake trainer like the Instagram world wears. I’m not sure. I wonder how my stomach would react. My abdomen, my digestive system.

Let me know if anything appeals and you want the link! ❤

This Wasn’t the Distraction I Wanted

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My husband has had a problem with a serious, painful, eye infection since October. Which, of course, is why I posted a photo of Marty Feldman from Young Frankenstein. Great movie. Anyway, this infection has been nasty, painful, and kind of gross. It turns his gorgeous deep blue eyes sort of icy, and then add the red…he looks like a serial killer in a horror movie

He also had cataract surgery in November. Or was it glaucoma surgery? He has both. He’s only 48, so it’s really unusual, but there’s a family history, plus he had this panic attack in August of 2015 that wasn’t..things weren’t right after. Because he is only 48 and still had vision, the Ontario government wouldn’t pay for it. So we could pay the  $9,500 for surgery, or use the drops for two years until he hit fifty.

In Canada, the health care is controlled provincially, so what happens in one province may not happen in another. Also, if you spend something like (approximately) 4% of your income on medical expenses, you can claim them on your taxes. Well, that ends up pretty simple for us. With my son’s physical and emotional therapy for Aspergers, my daughter’s Aspergers emotional therapy, my emotional therapy, injection fees, braces, equipment, medicine that we pay for…I believe there is a $1,000 deductible before we get to 100% of our medications covered by our employer plan. So we get there pretty easily.

When my husband sought treatment originally,  the doctor was alarmed. Husband had gone to our GP as our Eye Specialist was in Mexico volunteering, as he does every year. The GP remarked this was highly contagious and couldn’t believe nobody in the house had it. When the Eye Doctor returned 5 days later, husband was chastised for not going there first! 😄 We got some strong drops, the eyes cleared up and all was good.

The drops finished on Monday. Today at work, he texted me at 10:30 to let me know his eyes are bright red again. He called the doctor, the eye specialist, but can’t be seen until after 2:30. He waited and went straight there.

The doctor noticed he had swelling internal to his eyes, and gave him drops at 10x the strength. Husband has to go back on Friday after my appointment with my doctor. He explained the situation and is just going to get there when he gets there. I have some great community support here.

I was teasing my husband he was jealous of my infirmity and wanted to emulate it. He is so healthy and capable, this is a bit disconcerting. I hope this takes this time, I hate to see him in pain. He always hides it, but I know it’s bothering him.

Also, he’s been texting me all day, and I have been struggling to get something – anything! Done! 😋

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! 👣

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!

Medical Treatment

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Of course, I’m not just lying in bed in pain. I’m working with doctors trying to get me to the point where I’m stable. Since we’ve been chasing ‘stable’ for 15 years, it’s quite elusive. We are defining stable as a long-term situation where I’m able to do many of the things I want to do, such as socialize two or three times a week, sit downstairs with my family on a regular basis, and not be in incredible pain when I’m at rest. Also, being intimate with my husband would be nice.

Medication

When I was first established to have a chronic pain condition, I was put on opioids. One of the features common in EDSers is they often process medications quickly. I am one. So this 4 hour medication was processed in 3 hours for me. I needed to take it 4 times per day. What I didn’t find out until years later, in speaking with a therapist, I was likely going through a mini withdrawal every three hours. The pain was better, but I developed an awful online shopping habit in order to cope. I didn’t go into huge debt or anything, but it could have been better spent.

I’m now on a cocktail of medications that work very well. I won’t go into specifics, because that’s so individual, and my husband is my main pill manager, so I probably couldn’t even tell you if I wanted to! Included are an antidepressant, known to help treat chronic pain, a longer acting opioid, I have sleeping pills to use in an emergency, and have Marijuana based pills. I have cut down my opioid intake to a third of what I was taking in the beginning, and always look to cutting it down further.

Marijuana

I take three forms of Marijuana. I’m sorry to report it isn’t as fun as it seems. I take the pill form, and of course I don’t remember the name right now. I take the oils at night. My supplier uses olive oil, so it tastes like salad dressing made with paint chips. It doesn’t linger, though. I also vape in the morning.  I vape a high CBD low THC blend, so it’s closer to the stuff they give to the kids with seizures.  Closer, but not exactly. It has a little more THC, which I find helps the pain, but it’s not enough to make me stupid. None of this medication makes me “high” or “stupid” which is nice. The only time I’m out of it is when I’m in pain.

Eating Plan

I have had a horrible year with my stomach, but over the past two years, I’ve managed to lose 100 lbs. Part of it is because I’ve been sick and had terrible stomach pain. Based on this, my gastroenterologist suggested I try a FODMAP diet plan to deal with the stomach pain. This plan isn’t cute. I didn’t believe it would work,  either. I’ve tried eating plans for endometriosis before, no luck. But this was for a month, Andrew was going to help, it wasn’t THAT different from my eating now, and my stomach really hurt…. so FODMAP entails:

  • Gluten-free
  • Lactose free
  • No garlic
  • No onions
  • No glucose fructose
  • Low fruit

The Gluten-free is because of the sugars involved, the sugars produced are off limits. And because I’m low motility, little fibre, few vegetables because of allergies. I am working with a nutritionist,  because this does look kind of bleak.

After the first month I was amazed. I felt so much better. My joints felt better. I had significantly less pain than before. Even in my fingers! I have since spoken with others who have had similar success. I need to meet with the nutritionist to see if there’s stuff I can add back. I was feeling so good, I didnt mind. I was naughty over Christmas and am paying for it. As predicted, my stomach still hurts, but the rest is not bad.  Except my back…

Botox Injections

For ten years, I’ve been getting 400 iu of Botox every ten months in my torso and thighs. I’ve been also getting it in my head for migraines for about a year, 200 iu. It has been injected various times at the Wasser Pain Clinic at Mt. Sinai in Toronto, Canada. The torso injections are known as trigger point injections, as the doctor feels around your body, and when he or she hits a tender spot, you scream, and they mark, then inject that spot. You receive about 4 injections per needle, for about 50 to 60 injections. The Botox is mixed with lidocaine,  for some immediate relief. Unfortunately, as was predicted, my back hasn’t been taking well to the last two injections, and they may not work for me much longer. I see much doctor in ten days, we shall discuss.
A couple of things about this treatment, my physiotherapist is from England and has said this treatment has not proven effective for them there. I do not know how effective it is here, either, I know it worked for me…I could be a freak. At my last visit, my doctor mentioned he couldn’t start this treatment on someone now, that no insurance would accept it.

Therapy

Doctors seem to really like to know I’m in therapy, because then they don’t have to be responsible for my ‘depression’ if I cry. I really don’t understand why so many doctors will seem surprised and uncomfortable if you shed a couple of tears when they say something really quite upsetting to you. For example, my gastroenterologist looked positively shocked tears slid down my face when he said “You’re don’t really have much of a life, do you?” We’ll, not when I’ve been desperately I’ll for the past six months, lost 40 lbs in the last 3 weeks and am tired and scared. Based on these tears he pronounced me, “Profoundly depressed,” and dismissed me. I certainly have situational depression, which is being depressed about your situation, but I’m working on it as best I can. Trying to be positive.

Braces

When I go to bed, I can be braced head to toe if I want! I have ankle braces, knee braces, wrist braces, finger braces, arm splints, a mouth guard, my CPAP machine, and my satin lined caps to protect my curls. I promise you, I look ravishing!

Vitamins

I don’t necessarily believe in so-called vitamin therapy, but I do take a series of vitamins. I take potassium, known as vitamin k, to help with some of the deficiencies that occur, based on my medication profile. I spoke to my pharmacist for this advice.i take vitamin E to help with dryness. The same reason I take flaxseed, general nutrition, and because I’m on so much medication that causes drying, it’s helping somewhat. My eye doctor even commented it’s likely helping! I take melatonin to help me stay asleep at night. I found there’s only one brand and style that helps. I take a multivitamin and vitamin D supplements, because those with EDS often have poor nutrient absorption. I take them rather haphazardly, so I don’t have too many nutrients. I had a high B12 count over the summer, am trying to watch this count, not exacerbate it. I also take a cranberry juice pill. My husband claims my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having. I wasn’t so sure, but they aren’t expensive,  and I’ve not had a problem since I’ve started, except for some slight problems under my bust during the summer (totally expected, not as bad as previous summers)

So that’s basically what I’m doing at the moment. When I’m feeling a bit better, I will add more to my agenda. Pretty soon I will let you know what I’ve tried! 😀

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