So I have been meaning to make this for awhile, this is how I personally keep track of what medications I take, along with vitals, stand out symptoms, BMs, etc. This is going to be long because of the photos so I added a read more! I STRONGLY suggest this to anyone who is trying to find symptom triggers, who has memory loss, or just wants to give their doctor a clear cut picture of how their day to day life really is. It has been INVALUABLE to me. I use a “Moleskin Planner” but it could be adapted for any planner. I will probably pick a bigger one next year.
Fuzzy #zebraprint #kneelengthsocks with #pink trim ❤ ❤ ❤
The Ehlers-Danlos Syndromes is often symbolized by zebra stripes. In the early days of modern medical training, the school of thought was if you hear hoof beats, expect horses…not Zebras. Since then, this archaic philosophy harmed many of us living with EDS.
We persevere against great adversity to find a diagnosis holding the answers for lifetimes of pain and dysfunction. Still, we face countless dismissals from less educated practitioners. The Ehlers-Danlos Syndromes, particularly Hypermobility EDS, is intensely more common than once thought. Turns out, the Zebra analogy of the early days of formalized medicine is obsolete!
Even so, my Zebra peeps stake no less in our beloved mascot. The analogy shifts towards the unique characteristics to each, individual Zebra’s stripes. No two Zebra share the same stripe pattern and the same applies to those with any of the Ehlers-Danlos Syndromes. Each of us presents differently, making care management challenging to even the most seasoned practitioner.
Some of us walk, run and work…
Some of us used to…
Some of us will again…
And still, some of us never experience independent functions…
There are too many factors in calculating how different people respond to life with a chronic, progressively disabling conditions but the constant remains: Awareness improves outcomes!
Ten years ago, even with multiple pains, life threatening lab values, and distressing symptoms my doctors could never say what was causing my multisystemic dysfunction. Now, I finally know why but meet with disability because the damage can’t be undone.
This is why I can’t stop talking about EDS! I want others like my former self to know there are answers and hope for better quality of life with diagnosis. It shouldn’t be so hard but the #EDSSociety is taking great strides to ensure the awareness documentation is readily accessible for doctors who want to learn and doctors ignorant to the reality of this complex process. Finally, it’s a start & #ItsOurTime ❤
#EDSawareness #ZebraStrong #vascularehlersdanlossyndrome #pots #chronicillness #wheelchairuser #filas #knobbyknees
What helps your medical condition might not help other people
What you are comfortable doing to help heal yourself might not be in other people’s comfort zones
The choices you make medically may not be the same choices other chronically ill/disabled/nuerodivergent people make
Respect each other’s medical choices and don’t press them to try something just because it helped you; they might not be comfortable with it and it may not even benefit them.
We have enough adversity from the able-bodied community assuming we all need yoga and vegan diets, please try not to add to that when speaking to your fellow disabled friends.
My husband gave me an idea ages ago, and I wanted to actually put it into motion. So today, I give you the ‘Being Visible’ line of shirts.
The goal of Being Visible is to allow people with mental illness, or other invisible illnesses, to help make people aware of their coping abilities on any given day by using the simple image of a battery at various charging levels:
Low charge – low ability to function ‘normally’ or perform daily tasks. May need assistance or frequent breaks Medium charge – diminished, but capable of performing routine or simple tasks during the day. Some assistance may be needed. Full charge – able to perform daily tasks with little to no assistance or reduction in speed, effort, etc. Little to no assistance needed.
These images will be placed front and centre of various T-shirt/tank top designs, to enable wearers to non-verbally alert people around them of their limitations, if they so choose. Of course, as ability levels change, so too can the shirts. On the back of the shirt is the simple text line ‘Being Visible’ above the rod of Asclepius, the common symbol for medicine.
75% of the proceeds will go to the American Foundation for Suicide Prevention. The remaining 25% will go towards my ability to purchase several units of each shirt for my own use.
You can find the shirts at the links listed below. The target goal is 75 units each.
Hot shot of yours truly sporting my new #AxonOptics Migraine Glasses. #prettyinpink These are the Dalliance style with indoor lenses and pink frames. I am super-duper pumped for the opportunity to demo these glasses free for honest review through my membership with @chronicblogs
Be looking for my full review up on OnlyinthisHead.com in the next couple months!
In the last year, I’ve sat in roughly 30 different doctor’s offices and every last one used fluorescent lighting sources. As if these appointments weren’t painful enough!
Fluorescent lighting is a big trigger for not only my migraines but also my sensory issues.
The flickering and artifical brightness makes for misery business when trying to clearly communicate my needs. Something about those tubular beams of unnatural lighting activates my my brain fog something fierce! Since getting the chance to review these glasses, fluorescent lighting is a barrier I now succeed!
These glasses are the real deal!
Not only do they look super-duper cute but they also help me get through appointments without triggering my migraines, protecting my sensitive eyes from the assault of fluorescent lighting. At the same time, the lenses are not so dark people can’t see my eyes nor is it difficult to see while wearing them in lower lighting.
Just taking care of this small factor in my chronic illness life with ehlers-danlos makes a big difference overall in this journey!
I cannot recommend Axon Optic’s line of migraine relief glasses to others with lighting sensitives enough!
[Image Description: selfie shot of Dawn in the doctor’s office. She has long, medium brown hair with a large grey streak in the front, parted to the side with the bulk of her hair laying along one shoulder. She is wearing a grey sweater and pink framed glasses with tinted lenses. She is looking up defiantly and the reflection of fluorescent lights are in the lenses. In the background is a blood pressure cuff attached to a cabinet with a computer underneath.]
#chronicillnesslifestyleblogger #Migraine #photosensitive #Ehlers-DanlosSyndrome #migrainerelief #freeforreview #ilovemyaxonoptics #flourescentlights #theseaintcheapsunglasses
I always hate it when people are all “so do you go to school, or are
you working, or” and I either have to
make up some lie, or
eventually get
around to “I am not working because of depression/anxiety,” and
subsequently have to deal with whatever bullshit-riddled and completely
unsolicited opinions on mental illness this stranger feels obligated to
share with me.
So my therapist was like, “You don’t have to do either.
You can just say you haven’t worked in a while because you’re recovering
from an illness.”
I tried it when the home inspector was here today, and it fucking worked.
He was like, “oh, I’m sorry, are you doing better now,” and I’m like
yeah, and don’t worry, it’s not contagious, awkward laugh, and we moved
on.
MY THERAPIST. IS A GENIUS. Because it is an
illness, so it’s not a lie to say that, and it’s also none of his
business to know specifically what it is, and I clearly don’t want to
give more details, so we should move on from this topic. MYTHERAPIST IS A GODDAMN GENIUS.
Dude I needed this. I never know what to say when people ask if I work because I’m severely disabled and don’t work.
This isn’t realistic for adults. I’m sorry it’s just not.
Don’t fall into believing that, “if they’re a true friend they’ll drop everything and run to be by your side!” crap.
As a responsible adult there will be times that your friends are hurting and you won’t be able to go to them.
There are times that you will have to go to work, or take your sick kid to the doctor, or do many other things that will prevent you from being there for your friend.
When your friend calls you and they’re falling apart and it’s ten minutes until you have to leave for work, you’re not a bad friend for saying, “Look, I love you. I’m sorry this is happening, but I have to go. I’ll call you back tonight when the kids are asleep.” Or “I’m so sorry this is happening. I love you and I want to be here for you but I’ve got to get to work. I’ll call and check on you during my lunch.”
Adult life is hectic and busy with important things all the time and unfortunately it’s also full of shitty things happening to people we love.
Do your best to be there for the people you love and ask for support when you need it but be understanding when being a responsible adult comes before helping you.
The idea that people need to be there any time you need them is really damaging and unhealthy, too. You can’t place value on a person or a relationship based solely on whether or not they’re available, no questions asked, whenever you need them.
In addition to the above: sometimes, someone simply does not have the energy to help. Maybe they’re coming out of a rough patch themself, maybe they have been busy all day,maybe a chronic illness is flaring up. There are a myriad of reasons someone may not be able to be there.
Obviously, if someone is taking you for granted, and never seems to care how you’re doing, that’s an issue. But to write someone off because their life and your life didn’t line up quite right at a given point in time, or maybe even on more than one occasion, is not a healthy way to handle things.
Since joining up with the Chronic Illness Bloggers Network ran by Julie Ryan of Counting My Spoons, I can’t tell others experiencing illness enough about the benefits of being a chronic illness blogger. In less than a year, my membership connected me with a number of brands offering premium products to help manage the woes of my Chronic Illness Life with Ehlers-Danlos Syndrome. Not only that but my website stats steadily increase each month ticking by since joining. I connect with a number of Chronic Illness Bloggers via the network and enjoy working with Julie on campaigns as she is always ready and willing to help as needed. it is an absolutely phenomenal experience!
Chronic Illness Blogger SUPER MASSIVE Holiday Giveaway | OnlyinthisHead.com | Chronic Illness Life with Ehlers-Danlos Syndrome | [Image Description: Photo of a rectangular present wrapped in red paper with accents of golden and green leaves. There is a yellow bow on the top of the box. The background is white. The article and blog title overlay the article. Noted are four stars with text written over: 1. Runs 11.21.2016 to 12.03.2016 – 2. Free to Enter – 3. 11 Different Prize Packages – 4. Packages valued at $400-$600 USD. Underneath the present in black text reads: Details & Entry Inside.] Click the picture above to enter the Giveaway via Rafflecopter!!!
Improving the quality of that chronic illness life is always the goal and these products shine when it comes to bettering the day-to-day! With sponsors and prizes included in these packs donated by Chronic Illness Blogger Members, this giveaway a precedent benefit to the community I am overjoyed to share with my readers!
Entry is simple and free! Like all things in life should be!
This event is only available everyone; however, packages ten and eleven are only available to US-based participants. Winners are chosen at random via Rafflecopter.
Click through the gallery below to view available packages and feel free to share these photos across the online chronic illness community to get the word out on this colossal giveaway offering extreme value to winners!
The giveaway starts November 21st, 2016 and runs until December 3rd, 2016 so enter to WIN today!
This is a sponsored post. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company. There are also affiliate links in this post which earn the author of commission if utilized. Please see the Disclosures page for more details.
Today I’d like to talk about a very intimate struggle in chronic illness life all too…
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #1
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #2
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #3
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #4
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #
Chronic Illness Bloggers Network Super Massive Holiday Giveaway Prize Pack #
Holding the Bowl 