I had a lot of fun at a small Rin fair in San Luis Obispo today. :D andI'm just super happy right now. I rotated my hip getting on the horse, he's 17.1 hands and his name is Lancelot. #worthit
And I'm likly going to hurt a lot tomorrow but I'm okay with that.
Early this morning I had the privilege of driving out to the little town of Moro, OR to join Lt. John Cardenas at the Incident Command Center for the #SubstationFire to provide relief to the many firefighters who’ve worked so hard battling the flames. Only getting a couple hours of shut-eye last night has made today a rather long day, but it was definitely worth it. Many of the firefighters expressed their appreciation that The Salvation Army had a presence there, helping them to refuel with lots of coffee and snacks.
I don’t say this to “boost” me, but to give ALL the credit where all credit is due - Lt. John is the real deal! From taking the initiative in getting out there shortly after the fire began, to organizing and coordinating relief efforts with the ICT, to prepping and serving hundreds of people a day, this guy nailed it! It really was a pleasure to serve alongside him today. #madrespect#geterdone#SubstationFire#TheSalvationArmy#EDS
0 328 minutes ago
Let’s talk about braces!
This is my favorite brace ngl 😂 I have braces for just about everything, from my wrist to my elbow to my knees to my ankles! I have a connective tissue disorder called EDS (ehler danlos syndrome) that causes my joints to sublex and dislocate… a LOT 😂 my braces help keep them in place! I end up using my wrist brace the most, so I figured, why not make it pretty? ✨😂 🥄🌻
Yet another day lost to migraine. Severe 9/10 pain since last night, couldn't take an Excedrin cuz I already took 2 in the past few days, so I tried 2 ibuprofen and sudafed, sleeping, constant ice packs, food and water before I started feeling nauseous and gave up, went to urgent care. Got my usual migraine cocktail of 3 shots - toradol, benadryl, and phenergan - around 5 PM as they were about to close. Barely able to speak, constant ice pack, opening my eyes was unbearable. Once I got home I immediately went back to bed with a fresh ice pack. Luckily after awhile the meds started to kick in, and now at 8:30 I'm feeling much better. Brought it down to a 6 or 7, definitely took the edge off at least. Still taking it easy and mostly napping with ice packs, eating what I can manage. Pretty sure I need to go back to the lower dose of Cymbalta cuz my migraines seem more frequent now, my heart rate is acting up more, and my blood pressure's been pretty high. It's like it's cancelling out my propranolol.
7.21.18 - Hanging onto good memories of better times. Not doing great mentally right now. For the most part I'm hanging in there physically, but this GI mess has really got me down and my emotional state is pretty eh. I'm sad about how I constantly seem to be battling something, and bummed about what I imagine the rest of my life to be. In my future, I can't help but only see deteriorating joints, continuing medication problems, and pain. I know there will be so many other incredible moments in my future, but right now I am not feeling the positivity that that thought is supposed to bring. .
My job is incredible while also being extremely exhausting. I love working with the kids I get to work with, and I honestly find it so rewarding, but I have zero energy for anything else. The weekends are rough and reserved for rest and studying, simply because I can't do anything else without some dysautonomic response from exhaustion... Which is a bummer. But like I said, I love my job and somehow it's kinda worth it...
Look! It’s a younger, less pilled Edward! 4 years ago, I had surgery that completely changed my life. I had a Lefort I bilateral sagittal split osteotomy (what a mouthful...hehe) to correct a craniofacial defect and severe underbite causing me pain, trouble eating, and impaired speech. They broke my upper and lower jaw and I have 6 plates and 22 pins in my face. I’m so thankful I had it, but my chronic illness symptoms worsened afterwards and lead to my diagnoses. My case has been submitted to journals and textbooks because of its complexity and success of the surgery... but my battle certainly isn’t over. #chronicillness#chronicpain#chronicfatigue#cfids#cfs#ehlersdanlossyndrome#eds#fibromyalgia#raynauds#spoonie#doublejawsurgery#jawsurgery#underbite
0 262 hours ago
⭐️How do you score on the Beighton Hypermobility scale? 🤓 .
⭐️Did you know that your mobility scale changes the way your practitioner should be treating you? 😵😮🤔🤯 .
⭐️People with Hypermobile joints can suffer from chronic pain and need to be treated with care when moving through certain ranges of motion due to the laxity of their joints and the risk of damage. Hypermobile bodies have to work twice as hard to protect their joints from damage and can often lead to chronic muscle tightness and the feeling of restriction. .
.⭐️Exercise programs may need to be modified and certain stretching practices revised or even completely removed in some cases. .
⭐️Even clinical testing needs to be taken into consideration due to the additional ability to move further through range. .
.⭐️Hypermobility is something we are super passionate about here at Elite Movement Therapy and we would love to help you keep up your training goals in a way that’s suites you and your body best.🤓🤩
🌟It’s not all bad news though ladies and gentleman some degree of mobility is fantastic and even if you score at a high 9, strength and rehabilitation exercises can really benefit you as well as regular treatment for that chronic muscle tightness. 🙌👏👌
5 162 hours ago
I usually alternate between the couch and the guest room bed at family get-togethers. Today was different. 🎉Oh, and I finished off my gluten training with 2 slices of Papa John’s pizza and homemade banana pudding. 😊
Say hello to my brace. Nearly 3 years ago, I was diagnosed with a condition known as type 3 Ehlers-Danlos Syndrome (hEDS). Many of my friends and family already know this story, so I'm not going to repeat it here. (If you're curious, feel free to DM me!) Through multiple doctors appointments, physical therapy, and personal research, I have spent a great deal of time learning more about hEDS and what it means for me personally. One of the most important things I need to do right now is focus more on improving my physical health by exercising and cleaning up my diet. I have decided to start documenting my progress via Instagram in order to hold myself accountable to this, but I'm not going to be using this account for that purpose.
I have started a new Instagram that will focus on my journey towards bettering myself. If you are so inclined, please follow me @painfreedfitness. I would appreciate any support! (I'll start posting tomorrow!)
1 543 hours ago
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Day 202: 21/07/18 #photoaday •
Had a fab flatwork lesson with Cricket today 🖤 I’m still a bit more wobbly than usual due to not riding for 3 weeks whilst on holiday but he was such a star as always ⭐️ Did sooo much trot work though and since I ride without stirrups (b/c of my disability) you can imagine how I felt at the end of the lesson 😂💀 Worked on lots of circles and flexion which was super useful and also did most of the lesson on the inner track which is so good for helping Cricket learn to balance himself better and get straighter! Finished off with a cool down wander round the woods which was heaven after the stuffy arena 🤯 My POTS is so unhappy with this heatwave, heart rate hit 184bpm today 😖 Anyway I’m just so happy to be back on my boy 🐴 #equestrian#paraequestrian#hippotherapy#horsesofinstagram#goodpony#ehlersdanlossyndrome#EDS#chronicpain#chronicillness#posturalorthostatictachycardiasyndrome#POTS
1 164 hours ago
A question I often get is whether I ever get tired of looking after my body. Yes. All the time. It’s a lot of work, much like looking after a hyper active kid who wouldn’t let you rest and requires all your attention because you never know what he might knock over or set fire to. Of course it’s tiring!
Over the last few years I realised that sometimes it’s almost impossible to find a direct link between what you do and what happens to you unless it’s a traumatic injury or in fact that obvious. Can you imagine the kind of questions we’d have answered by now in the realms of chronic illnesses and #life if it all & always worked on a very distinct cause and effect basis?
I’ve personally noticed that there could (not always) be a cumulative factor to it instead. Ten different things added together may lead to a particular favourable or unfavourable result.
For example, sticking to my daily routine in terms of self care and rest, my nightly routine, my weekly physio and pilates, all my strengthening exercises, medications, spending time in my safe and healing environment, following my specific diet, all my doctors’ appointments, not signing up for any societal obligations and exercising the power of saying NO, usually allows me to manage my health symptoms better and sometimes even do more.
Similarly, not being able to do any of the above causes my body to start deconditioning and overtime I start to lose my day to day strength. Now, add that with significant movement from traveling and a few days of too much activity and my health starts to deteriorate. Hence why I speak of sticking to a daily routine, setting flexible goals and drawing boundaries for yourself. It can become the difference between me fighting a chronic illness versus managing one — and that’s a big deal.
Over the last ten weeks, i was somehow managing my symptoms but not doing a very good job of it. Sooner or later, my body was going to begin to decondition. It’s happening now. After a horrific night of painsomnia and lack of sleep, I just spent the entire day curled up in bed.
I think I’ve hit my limit and all I want to do is rest and recuperate. #chronicillness
Tons of pain today! I think I did maybe too much at Physical Therapy? That's where my shoulder tendons and elbows wouldn't stop grinding! But ya suck it up and learn to deal anyway. You get up and you try anyway. I'm standing here and I'm tryin anyway.
Is this normal to experience this type of pain with #EhlerDanlosSyndrome? #EDS ? #Zebras#ChronicIllness#ChronicPain
Today is the Global Day Of Inclusion in Canada.
As someone who grew up being picked last, if I was included at all, I urge you to remember feeling unwanted is the worst feeling there is.
Please don’t ever leave anyone feeling that way.
Had to go to the ER today. Don’t let the smile fool you, it was the worst. They were worried about my heart so I had to have a monitor and the headache mix makes me twitch. The. Worst. 🙃🙃🙃 heading home now to crash
I think I put more almond butter on my breakfast this morning- I just love it!
The other odd looking blob is: Gooseberry and cinnamon compote! I’ve wanted to try this ever since that Cathrine Tate sketch years ago 😂 with the gooseberry and cinnamon yogurt! I don’t know if other people found that as funny and memorable as my mum and I did!