This is the face of accomplishment today may have started two hours earlier than I would have liked.....I payed there for an hour and got up got my workout in and did a mile walk. I can already feel the change in my body, mind, and soul. Onto this short day and some friend time tonight!
long time no post! haven't been able to make it to a full day of school in 2 weeks which means i haven't gone to math iN 2 WEEKS and even though i've done the course work that i missed i don't understand it! i felt wicked anxiety about it today because i was in 9/10 pain and had to go home and i was so nervous about missing another class so i went and talked to one of my drama teachers and i cried to her for 30 minutes and she was SO kind and helpful and understanding, so i'm gonna email my math teacher tonight to hopefully talk with her tomorrow about what we need to do so i can pass! my toradol is kicking in now so i'm at a 6/10, which is manageable but really uncomfortable. now to have a nice essential oil bubble bath with candles and netflix to relax!! ive been quite optimistic the past week since i opened up to my mom about the new mental health troubles that being in chronic pain has brought on. everything is worse when you're in pain, and it takes strength to get through this, but i will. ill get through this with a smile! i am positive, i am happy, and i have reasons to be alive! hope everyone is well today!
One of those #tachycardia kind of days. Today, my heart rate was above 100 if I was sitting, and went up to 142 while standing. You can see when I woke up/sat up, when I stood up.. and this picture was taken when I was sitting at a desk studying We all know this makes us feel like shit. However, there are ways to sometimes deal with it a little. One day i was watching tv and there was an elite athlete on it who did that sport where you ski then shoot then ski etc. To shoot she had to lower her heart rate, so you could almost say that the speed at which she could do that was part of the race. She was explaining how she does it. She envisioned a tunnel, and blocked everything else out. Meanwhile she breathed slowly in and out. I do a similar thing to what she does, but envision a walled in corridor that is filled with water.. and I make myself float in it, and slow my breathing right down. I imagine my body as almost weightless. Ok, so this might not take me out of tachycardia.. but it often helps... and can make about a ten beat difference often. I also don’t let my tachycardia stop me from doing exercise. Sometimes yes, you might just need to lie down. However, if I’m in tachycardia.. and have that horrible anxious body feeling it can sometimes make you have.. I go for a walk. My body kinda then decides that having a hr of 140 isn’t so abnormal in he circumstance and it makes me feel a bit better. Sometimes.. you just need to lie down and put your legs up! My cardiologist has given me some pieces of compression clothing to buy, so hopefully that will help as well. She has recommend some shorts and something that compresses my abdomen. If anyone has a brand they love and has nice fabric.. pass it onto me. I had compression stockings both the feel and having them on.. so I am looking for something better. #dysautonomia#orthostaticintolerance#autonomicdysregulation#autonomicdysfunction#ehlersdanlossyndromeawareness#ehlersdanlossyndrome#eds#connectivetissuedisorder#edsawareness#ehlersdanlosawareness
I saw the hand therapist earlier today, she was super nice. She tried to size me for oval 8s but the size 5 was too small and the 7 was too big, they didn't have a size 6 on hand so she's sent off an order for size 6 splints and she's trialling these handmade plastic things in the mean time to immobilize my first finger joint since those are my most hypermobile finger joints. She's only trialling me on one, and it's a sexy bright blue colour
I see the surgeon tomorrow for a post op follow up and I find out when I can take off the sling!! I'm also gonna make another doctors appointment with my GP to ask about my TMJ and see if I can get a referral to the hospital dentist or whether I should just see my dentist and see what she says about it. My jaw has really been worsening, I can hardly eat an apple anymore and I don't have the hand strength to cut up my food all the time so I'm kind of stuck. I used to have a night splint but I've grown out of it and my teeth have shifted and it hurts my gums when I wear it now so I probably need a new one.
Also going to ask him about being covered by ACC for a j brace since I really can't afford one
BEST SMOOTHIE YET
It really made a difference blending the kale first for about 4 minutes - I also bought organic full leafs and destemmed them. I also added ice!! It's amazing how chilling the smoothie out really makes drinking it a more pleasant experience.
This has the usuals: rainbow chard, parsely, 2 apples, 2 bananas, 2 celery stalks, tomato, lemon, tumeric.
I've already addressed the crazy awesomeness of those veggies, but here are some exciting and delicious additions:
3 beets: The health benefits of beets include treatment of anemia, indigestion, constipation, piles, kidney disorders, dandruff, gallbladder disorders, cancer, and heart diseases. They also help prevent macular degeneration, improve blood circulation, aid in skin care, prevent cataracts, and treat respiratory problems. These benefits of beetroots can be attributed to their richness in nutrients, vitamins, and minerals.
This also has a cucumber. Among being a great source of all kinds of vitamins (including K) and magnesium - it also contains Flavonoids, which are anti-inflammatory substances, and tannins which have both been shown to limit the release of free radicals in the body and to reduce pain.
A huge chuck of ginger: among other awesome benefits, ginger has anti-inflammatory properties and reduces muscle pain.
Butt ton of garlic: also anti-inflammatory
Collagen peptide powder: Collagen is the body’s most important building block and it makes up approximately 30% of the proteins in our bodies. Collagen is the key structural protein that ensures the cohesion, elasticity and regeneration of all our connective tissues, including skin, tendons, ligaments, cartilage and bones.
I ordered these wrist braces from eBay like four months ago and Forgot! Well that’s what happens when you order from China sometimes. They finally popped up in the mail and I quite like them! I’m often not using bracing actually because most of it bugs me with my sensory issues and I’m very fussy. I’d rather just avoid getting injured. Depending on how sore I am or weak i am. Sometimes I have no choice. If I want to move that is or even just because it hurt so bad that even not moving hurts and somehow it’s like I’m being injured anyway. Crazy how that is. Are use the tape but then I Became allergic to the KT tape and that was devastating to me because I really liked it. I still take my back up with hyper allergenic IV tape when I have to. It’s definitely not as comfortable but my skin doesn’t get angry. these are comfy and elastic and I love that because I’m elastic LOL! Nice elastic EDS scan and hand ha ha classic just look at me. I can’t believe these doctors denied me for so long I look so EDS I have so many damn features of the thing and always have. But that’s what doctors do their afraid of Ehlers downloads syndrome so they try to deny people diagnoses. Particularly when they’re intimidated by the persons strong-willed personality. I don’t think I’m alone there #zebrastrong#woot#bracing#livingwitheds#connectivetissuedisorder#whateverhelps#ehlersdanlossyndrome#ebay#savemoney#onlineshopping
Today, was a day
I woke up with a sore neck and shoulders and ribs (thanks sling) and texted my mum to see if she could take me to my doctors appointment, she picked me up early and we got some errands done before my appointment.
My appointment went pretty good, my GP thinks I may have properly dislocated my patella instead of subluxating it like the other doctor said I probably did.
He gave me a prescription for some naproxen, (anti inflammatory medication) sent me for an xray at the hospital and suggested that I buy a J brace for my knee, so we went to my pharmacy and asked them if they had one and my pharmacist actually had never even heard of it, but he googled it and told me they're $50-150 NZD which is crazy expensive, I thought it would be at MOST $50.
Anyway at some point we found out that a tyre on my wheelchair was super flat and so we went back to my physio office and they tried to pump it up and it immediately deflated so we went back to the hospital equipment shed for a new tyre and they ended up just giving me a whole new chair.
So we went and got my xray done (second photo), I doubt anything's broken but we had to get it done, yay more radiation haha
After that, we took the new wheelchair out for a walk along the beach (third photo) which was really good for me, it was pretty cold but the beach always makes me feel better, and after that we had mcdonalds for dinner (healthy, I know) and I went home and now I'm in bed really sore and worn out, and now it's almost 3am
I see the hand therapist tomorrow at 1:45 to be assessed and sized for oval 8 splints (hopefully anyway) and I also have a home appointment at 10am so I have to be awake early
Wish me luck with the hand therapist! And I'll update on how that all went tomorrow (: