Last Friday, we took a mini-hike down a trail to a waterfall while I was mid-flare. I tried talking myself and my husband out of it, but I am so glad I didn’t succeed in doing so! I am still dealing with the pain of the hike days later (and I fell on my butt 🤦🏻♀️), but I would do it all over again. Days out of my bed are my favorite.
Monday morning blood draw. ✔️
A few months ago my labs showed low iron & pre-hypothyroidism.
Both of theses deficiencies (among others) are common in EDS patients. So, I was placed on an iron supplement & levothyroxine. Today’s draw will check those levels. 🤞🏼
Since starting both pills, my energy has improved & my hair is falling out less!
Often in chronic illness, patients report a lot of different symptoms. It’s important to write them all down & share with your provider.
This has helped my team treat me. It’s important to find a doctor who looks at all symptoms to help determine a diagnosis & treatments. The “big picture” is important.
And to everyone who has seen someone who doesn’t believe you can have multiple symptoms, please know I believe you!
Don’t doubt yourself. Listen to your body. And Don’t give up searching for a doctor who believes you. They are out there.
Sending healing energy & positive vibes always. 🙏🏼
Never fully dressed without a smile 😊
Feeling good today.
With my new meds on board I slept properly for the first time in over a month!
I am heading to the studio with my arsenal and some good food and hoping for a good day 🤞🏻
Yesterday proved the morphine will be worth it. I know that opiate pain relief is never able to be a long term solution but I think it will give me a break from pain enough that I can function for the week, or however long we continue with this treatment, well enough that I needn’t ( to quote my dr yesterday) use so much courage and strength to survive the bare minimum. It feels like a blessing.
I also had the $200 refund for the FDI crutches I ordered a week ago - the order was cancelled by U-Buy because of fraud detection on the purchase. So I have money again. I also have found some that are comparable for a 1/4 of the price on another more reliable site so I’m still getting new crutches 💪🏻
But yeah... yesterday was quite something. I got so much done and could focus and talk with mum with full attention and even join her with cooking dinner! And then a good sleep at the end of it all!
Here’s your daily reminder that chronic illness isn’t all ups - the downs can come out of seemingly nowhere. I’ve barely left my apartment today, had a bunch of stuff on my to do list that absolutely didn’t get done, and feel like someone is drilling into my skull. Sometimes, shit sucks. Then why am I smiling? Because I know this will pass, I know it will come again, and I know I can handle the outcome regardless. Now back to my bed, aka my office ••• #choosehappiness#spooniestrong#chronicillnesswarrior
I wanted to share an amazing discovery. I frequently have head pain/migraines that require me to wrap my head in ice packs. I can completely demolish an ace bandage in a matter of months (see 2nd picture) so I've been on the look out for something sturdier AND I also wanted something other than the boring beige color, after all I wear them a lot and I love color.
Well it turns out the elastic bandages they make for horses are both more colorful and sturdy. They are meant for horses ankles so they aren't too long (the ones I ordered are 8.5 feet). The brand is Trace (seen in the third and fourth picture). I got one in blue and yellow. They just arrived (they came extremely quick). So far they are very strong and more comfortable than I expected. The velcro is different than a regular ace bandage because the velcro does not stick to the wrap material itself. It is meant for a small horse ankle, so both components of the velcro are near each other, set apart by about 6inches of wrap. However I got around that by simply looping it over one of the wraps to attach to the other velcro component, it actually make a stylish little tuck (not sure if that makes sense, hard to describe all that. In addition, I'm realizing I'm revealing how low my style bar is by attributing the word stylish to my head bandages) .
The fifth picture has the catalog of the place I ordered from. I was very excited about this discovery and thought I'd pass it along in case anyone else had been having the same problem. I'll have to update on how they survive.
It’s been a weird, good, restful couple weeks. Last week I went back to my hometown in small town East Texas and it really felt like a good part of my sabbatical and restful.
However, as my stem cells work into healing mode and start to break down and rebuild nerves and my cortisol levels out, that comes with symptoms like headaches, heart palpitations, and anxiety. It’s a weird feeling! BUT - I don’t know if it’s because I’m living that sabbatical life and actually resting and sleeping or if it’s because I’m healing - but i am feeling myself bouncing back quicker from long days which is nice. But, since my palpitations are worse, by the end of the day my heart *demands* for me to lie down! It’s so funny how our bodies tell us what to do. My heart may have an average rate of 110 BPM, but at least I’m not as tired? Haahahahaha *laughs and cries at the same time* #lyme
The picture on the left is someone who suffers with chronic pain and fatigue. The picture on the right is also someone who suffers the same but with make up on. Invisible illnesses makes it so easy for people to judge you and think you’re perfectly fine because they can’t see the daily suffering you go through. Even though I find it hard to follow my own advice sometimes, don’t listen to anyone who just says stupid small minded comments like “you don’t look ill” or “you’re just lazy”. Only surround yourself with understanding and supportive people who would never judge you. Don’t ever feel you have to apologise to people or feel guilty because you’re not well enough to do something. And most of all, do not ever feel that you’re useless or not good enough. Your illness does not define you and you are doing your best which is all that matters ❤️ #chronicillness#invisibleillness#chronicpain#chronicfatigue#fibromyalgia#spoonie
WARRIORS OF THE WORLD Presents: 'The Dual Of Invisible Disabilities' EVENT
Thursday 27th Sept 7:00 -9:00pm
(Venue to be Announced: Olton, Birmingham UK!) Finding healthy Solutions TOGETHER!
Support the Cause! ⦁ Raise Awareness
⦁ Discussions and Speeches
⦁ Educational talks
⦁ Unity ⦁ Be heard and listened to
⦁ LIVE MUSIC!
For more enquiries please email.
Artists & Musicians Get in touch to perform!
Lady MJ warrior's Exclusive MUSIC VIDEO SCREENING!
There are a multitude of invisible disabilities with several conditions that can interlink and cannot always be seen with the human eye.
The etiology of these heterogenous conditions can be unknown or unheard of…. CONQUERING THE STIGMA!
There is lack of awareness for invisible disabilities so there can be an automatic adversity and prejudgment. This is accumulating more detrimental health for future generations, alongside precipitating social exclusion. There is little research and resources to support people with hidden illnesses at present.... TOGETHER WE CAN RAISE AWARENESS!
This will be a relaxed setting with good vibes, good music!
Bringing people together with community spirit and respecting each other. ONE LOVE!
Join the WARRIORS OF THE WORLD!
Music. Peace. Love. Hope
#advocate#education#invisibleillness#chronicillness#butyoudontlooksick#disability#events#awareness#charity#cause#community#doctor#doctors#musicvideo#studio#hiphop#rap#music#movies#celebrity#singer 🎶 #femaledj#rapper 🎤 #presenter#tv#model#actor 🌟 #femalerapper#LadyMJwarrior 🌟🌟🌟🌟 #WarriorsOfTheWorld 🌋🌋
Have you named your stoma? ✨ Even before I gained my ileostomy, I knew that a lot of people named their stomas. It took me over a week to figure out his name, I just kept referring to it as a “he”. My mum kept pushing me to name him, telling me he’d have an identity crisis soon! 😹
My sister and I were sat in the hospital garden trying to come up with a name... one of us jokingly said He Man. And it just stuck 🙈
It actually fits well because my stoma is a hero, who has given me my life back. He has given me “the power,”!! I still mainly refer to He Man as just ‘he’, it’s easier that way and everyone around me knows what who I’m talking about anyway 💕 Don’t feel pressured to name yours, if it doesn’t suit a name or you’re uncomfortable then don’t feel you have to! On the other hand, I’ve seen some funny and odd names for peoples stomas on this app! What do you call yours? Let me know all your weird and wonderful names!
Though I am passionate about and fairly good at spreading awareness and being open about chronic illness here to a whole bunch of strangers, one of the things I struggle most with is being real and open about my health with the people that surround me in person everyday.
Sometimes, it’s because they met me before I was sick(er) and I want to keep up “the act” of the person they knew me as before. Sometimes it’s selfishly because I want to ignore everything and enjoy the moment while pretending I’m perfectly healthy.
Most of the time, it’s just because I don’t have the energy to explain or educate or advocate or ask for help, even if I want to.
So, I want to plant a little nugget of wisdom to anyone and everyone that has someone with chronic illness in their life, in any capacity...•The days and moments in which we seem fine are the ones we need most for you to remember we’re not.• Those are the times when, just because we aren’t talking about it or showing it, doesn’t mean we stopped feeling it. They’re the times when, despite being happy that we can feel and act healthier than we are, we still long for someone to notice the pain or struggle behind the smile. Become as good at catching onto our bad days as we are at hiding them, and you’ve already taken a weight off our shoulders.
[image description: Jenna’s hand, palm flat and facing up, resting on her leg. She is holding twelve pills, mostly white and round, an amber syringe and a clear syringe both filled with liquid medication. Her black pants in the bottom corner say “11 lacrosse”.]
Don't forget to BREATHE
Studies are now showing that organs and cells die when it doesn't have enough oxygen. Colons die without oxygen and blood flow. Remember to breathe and move, even through stressful situations
.... you'll feel more relaxed and maybe avoid surgery!
Detoxing... Just re-read the chapter in @medicalmedium first book about the 28 day cleanse. 🌞
I always learn something new. 😊
This time ...I was reminded of the old memories that can come up during a detox, which means the old toxins are being removed. 😮
I had some old memories on Sunday come up. Because Sunday used to be the Wonderful World of Disney on tv. 😁
We would watch every Sunday. Sometimes a movie would be shown and it had to be in two parts. One week apart because there was only an hour for the show and the movie was too long. 💕
Can you imagine having to watch the second half of a movie a whole entire week?! Haha. 🤔
These past few days have been like going back in healing for 5 months ago. It really shows how much I have healed since then, which is so eye opening!!!
But there are layers to go. 🌞
I am not thrilled with the joint pain (really awful in hips and fingers for me) and vivid dreams and unrestful sleep, exhaustion, sensitive to all stimuli. ... So I am considering what I can do to reduce those while still being on the raw cleanse. 🌞
I didn't eat enough on days 3-4. That could have been because I wasn't feeling good....or wasn't feeling good because I was not eating enough. Not sure which came first. 🍓
Today, I am trying more restorative foods. 🍓
Here's what it has been so far.. 1.celery juice when I first got up.
2. Heavy Metal Detox Smoothie
3. Mango Smoothie with Hemp seeds
4. Cucumber and Date snack
5. Lemon juice +water + barley Grass Juice Powder + honey + spirulina (it was not really cold water and it didn't taste great. I gulped it all down!)
6. Lemon Juice +water + honey + zinc liquid. <<< Ready to go. Have not drank it yet. ......
Yesterday's lime +watermelon +ice cube slushie that is in photo was AMAZING!!!!! If I had more watermelon, I would make more !! ......
I think all the hydrating and restorative foods today are giving me relief. More energy is happening ....yay! Time for some gentle yoga.💞 #mentalhealth#medicalmediumprotocol#28daycleanse#medicalmediumcleanse#healingnaturally#plantbaseddiet#raiseyourvibration
One of my favorite photos from my travels this summer, paired below with one of my favorite poems. It is hard to let go of what others think, of what disability looks like, of judgments made on choosing to travel and love life when supposed to be “sick”. Taken while exploring the beautiful waters & caves off the coast of Portugal, I love this picture because I think my happiness shines through, my smile speaks for itself. Titled ‘She let go’ by Rev. Safire Rose, this poem continues to inspire me. Hope you enjoy as much as I do 🙏🏼💕 - xo, Linds
She let go. Without a thought or a word, she let go.
She let go of the fear. She let go of the judgments. She let go of the confluence of opinions swarming around her head.
She let go of the committee of indecision within her. She let go of all the ‘right’ reasons. Wholly and completely, without hesitation or worry, she just let go.
She didn’t ask anyone for advice. She didn’t read a book on how to let go. She didn’t search the scriptures. She just let go.
She let go of all of the memories that held her back. She let go of all of the anxiety that kept her from moving forward. She let go of the planning and all of the calculations about how to do it just right.
She didn’t promise to let go. She didn’t journal about it. She didn’t write the projected date in her Day-Timer. She made no public announcement and put no ad in the paper. She didn’t check the weather report or read her daily horoscope. She just let go.
She didn’t analyze whether she should let go. She didn’t call her friends to discuss the matter. She didn’t do a five-step Spiritual Mind Treatment. She didn’t call the prayer line. She didn’t utter one word. She just let go.
No one was around when it happened. There was no applause or congratulations. No one thanked her or praised her. No one noticed a thing. Like a leaf falling from a tree, she just let go.
There was no effort. There was no struggle. It wasn’t good and it wasn’t bad. It was what it was, and it is just that.
In the space of letting go, she let it all be. A small smile came over her face. A light breeze blew through her. And the sun and the moon shone forever more. 🌙
Diary entry No. 461
I need to vent.
My other half has basically had a 2 job offers abroad.
Which would mean moving away from everyone I know, to a country where they won’t speak English & I know I’ll feel isolated.
It’s so difficult for me to say yes or no. I want my daughter to grow up around my family & friends.
Granted I don’t see them that much but when we do it’s great (most of the time)
& god forbid if there was an emergency & my daughter was taken to hospital I know there would be people only a phone call away that would come & be there for us.
I wouldn’t have anyone if we moved away. I suffer with social anxiety as it is, so having to start over & make “new friends” scares the shit out of me.
Anyway, I’m getting off subject, my in laws were on Skype tonight & of course the job thing came up in conversation. We spoke for a long time but all I remember from it was when my Father in law said:- “well when I got a job offer abroad my wife supported me”
He didn’t even say it in a nasty or manipulative way... but that’s what I keep thinking about.
That I’m a burden & a failure to my other half, that I’m holding him back & stopping him living his life.
& all because of my own ridiculous worries & concerns.
I also worry about how my MH would be in a new environment. I’d have nobody, only him.
I would have to lean on him even more than I already do.
I also want to add that my in laws have moved to different countries lots because of my FIL’s job. So it’s an easy answer for them.
I know everyone knows that the reason we haven’t said yes yet is because of me. This could be an amazing opportunity for him, for us...
So why can’t I feel excited?
Lots of love, BorderlinePersonalityGirl x
Repost from @mandestroyed991over
This is gonna get reaaaal deep guys... so get your scuba diving set ready 🌊
Have you struggled with feeling a loss of identity due to endometriosis? After watching the Netflix docuseries Affliction yesterday, it got me thinking about this after one chronically ill lady mentioned that she felt like she was grieving for herself. Although her situation was quite different, I could definitely relate to her words.
When I first started getting sick a year ago, I started off in the denial phase.
"It's fine... I'll feel like myself again in a week or two!"
When I didn't get better and started getting much worse, I went into full on panic mode.
"Ahhhh... is this my life forever now? I'm doomed!!!!"
Then came the grieving stage. I was no longer the girl who loved to go out for dinner with her friends. I was now the girl who either bailed or went out for dinner feeling anxious and dosed up on anti-sickness meds. The fun drinking me, the silly me, the travelling me... all of these things were slowly being replaced by a new type of me. The me that put my undiagnosed endometriosis and surgery before anything else. The me that got excited over checking the postbox for NHS letters instead of booking flights. I had completely lost myself... but who could blame me?
I was fortunate enough that I had supportive people around me and that I managed to hide it enough so that I didn't scare everyone off, but it was still a scary and isolating experience to go through.
Now that I'm in a much better place after surgery, I'm starting to learn who 'me' is again. However, it's definitely not the same me as last year... and I'm glad!
Some women struggle with feeling a loss of feminitity due to fertility struggles or feeling like their reproductive organs are 'faulty'. Some women have to drop their careers or lifelong ambitions - things that are often some of the biggest parts of our identity. Whatever the loss is, it’s never easy!
(CONTINUED IN COMMENTS)
Brain Fog is another fun thing that comes with chronic illness. It’s super frustrating when you can’t think clearly. I’ve gotten into a few sticky situations because of it lol. I should say that Brain Fog can come about for other reasons, not just chronic illnesses. .
Also I have to apologise for my Spanish in this video. A made quite a few mistakes. I recorded this like 3 times so i was super tired haha
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#youlookokaytome#chronicillness#chronicpain#autoimmunedisease#lupus#invisibleillness#fatigue#brainfog#spoonie#mentalhealth#selfcare#selflove#video#vlog#contentcreator#londonblogger#health#wellness#healthblog . .
Music Credit: Dj Quads
Track Name: "Blushes"
Music By: Dj Quads @ https://soundcloud.com/aka-dj-quads
Original upload HERE - https://www.youtube.com/watch?v=Obnct... Official "Dj Quads" YouTube Channel: https://www.youtube.com/channel/UCusF... License for commercial use: Proof of "permission for commercial use" can be found on Dj Quads SoundCloud page, or in the description of his original YouTube upload.
Music promoted by NCM https://goo.gl/fh3rEJ
Living with Pulmonary Hypertension isn’t easy! One day you can be visible and another day you can be invisible! The chronic pain, the migraines, the fatigue and severe breathlessness makes everyday life difficult. Despite having PH I am all of the words around me! I may have PH, but I won’t let it define me! I am foremost a wife, a daughter and a fur Mummy! I am a PHighter and always will be until I have my double lung transplant or a CURE is found! PH lives with us, not the other way round!! 💜💪♿️ @i_weigh #iweigh#fuckingkg#pulmonaryhypertension#NoCureAlwaysHope#chronicillness#invisibleillness
Need your daily dose of cuteness? No prob llama! 😅
Meet my new friend who I encountered yesterday at The Big Apple @bigapple401. When my grandparents were alive, they lived in Toronto and we would stop here every time we visited, so we could get a treat.🍎
No deeper meaning to this post - just wanted to make you smile! Because this llama made me smile. Life can be tough - I'm grateful for bursts of loveliness whenever they happen. Have a good evening! 💕
Woah! How did this happen? I bought a scale and started weighing myself everyday last week. I was shocked when the number was 8 pounds less in just one week. Although weight loss is not the goal of my keto journey, it’s definitely an added benefit! I have gained a decent amount of weight in the past 3 years that my migraines have turned chronic... its been hard because I was always an athlete and would go to the gym or run almost every day. Because my head was in almost constant pain, working out was no longer fitting into my life. Thanks to eating strict keto, I’m already feeling like I have more energy than I’ve had in a long time so cheers to that! 🙌🏽