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For the flickr group, "Smile on Saturday," and this week's (Saturday May 6, 2023) theme: "Blue for You - ME 2023."
As a person who has suffered with Fibromyalgia, Osteoarthritis, and Ankylosing Spondylitis (among other health issues) I can sympathize with my fellow pain sufferers.
I had a pretty bad autoimmune flareup this week but the kitties did their best to help me feel better.
Some thoughts on pain for those who might need this today:
You are not your pain, in the same way that you are not your illness. It is something you have, separate from who you are. It is not your identity.
Pain is inevitable. Suffering is a choice. Life is filled with times when we feel pain, either physical or emotional. Suffering comes from what we tell ourselves about that pain and how much control we allow it to have. When we give into the anxiety, when we hyperfocus on it, when we tell ourselves that it’s unbearable, we feed the monster. We can refuse to let it have control over our emotions. We can cry and move through things. We can live with our pain and still lead happy, fulfilled, productive lives.
Pain is a messenger. It shows up to tell us to pay attention to something. It has much to teach us about our bodies, our boundaries, and our needs. It’s not the enemy. It is a symptom of something else. Listen to your pain. Ask it what you need to know. Sometimes it is a message to slow down. Sometimes it’s a message to move, to stretch, to change positions. Sometimes it’s a message that you need to eliminate something from your life. Sometimes it’s a message to express hidden truths, to have a good cry, to accept and forgive. Sometimes it’s a message to go outside, take a slow walk, and experience the wonder in the natural world. Sometimes it just wants you to make a nice cup of tea, listen to some soothing music, and take a warm bath.
Pain is a teacher. It tells us how far we can go. It teaches us how strong we are. It teaches us that we have choices in how we perceive and interpret things. It teaches us that it is but one part of our story. It teaches us about cycles and rhythms in life. It teaches us to pay attention to nuances, that everything in life exists in varying shades of grey. It teaches us about transcendence.
Pain isn’t to be feared or avoided. It exists for a reason. I’m grateful for my pain and all that it has taught me. The hardest things we go through become our best teachers.
Digital paining based on an old Polaroid.
Dissociative Identity Disorder on Social Media: robertmgoldstein.com/2016/12/03/dissociative-identity-dis...
We decided to take the plunge and get electric bikes. They’re the Giant Explore model and we love them! They’re class 3, meaning they assist up to 28 mph and only when we pedal. I was pretty hesitant to get them at first but am very glad we did. The chronic illness I have means I get sick if I exert myself too much, which I’ve been doing on our bike rides this year. Having an electric bike will allow me to enjoy biking while still getting exercise (and not worrying about how I’ll feel for a week after the ride).
As for Mike, he uses his bike for work pretty often and this will make his commute much nicer!
“Here's the thing about wildflowers, they take root wherever they are, grow strong through the wind, rain, pain, sunshine, blue skies and starless nights. They dance, even when it seems there is nothing worth dancing for. They bloom with or without you.” -Alisha Christensen
While I’ve always been a wildflower, I am not a delicate flower, which makes having a chronic illness that much more frustrating. So many times I feel like I should be able to do certain things, but my body tells me otherwise. Still, maybe this is my body’s way of telling me it’s time to slow down and enjoy life at a different speed. It also means I take better care of myself than I probably would otherwise.
I won’t let my illness define me, despite its efforts to take over my days at times, but I have to recognize and respect the limitations it puts on me. I’ll remain a wildflower, though. Nothing could change that!
Notebooks from Cavallini & Co., bandana from United by Blue.
For 2021 Ive joined the 52Frames challenge, the first week is on the theme of self portrait. To say I hate self portraits is an understatement (I make weird faces), combined with a recent flare up of health issues, its the last thing I wanted to do this week. The brief also said to be vulnerable too, all of my least favourite things in one place. I figured there was nothing more vulnerable than admitting after the whole mess of 2020 and recent events I was feeling utterly broken, so here I am, showing the world. I joined this challenge to push myself, and for me it doesn't get much more pushy than this!
Mentally Im fine and coping well now BTW, Im still not physically well, but thankfully the mental meltdowns that accompany a flare up are generally quite short. It definitely had the upside of providing some inspiration, always a silver lining I guess!
If you're a person who is chronically ill, you may have experienced some version of what I'm trying to portray here: the bad pain day. I mentioned a while back when I got covid that I had already been a chronically ill person beforehand, and that I had been wanting to do more portrayals of that. I had to get a couple spinal MRIs today and the concept for this image was running through my head while I was in the machine being vibrated. How could I portray what it can really feel like to be a person with an ongoing illness?
My health has not been great for a while, but has gotten more complicated recently. I'm as okay as I can be, it's all being worked on by the relevant medical parties (so no need for medical advice).. but it means lots of ice packs for pain, meds to try to manage symptoms, sometimes cold showers/baths to calm down nerves that are working overtime, and many phone calls setting up medical appointments and talking to my insurance company. I am tired and uncomfortable to say the least, but I have good days and bad days.
Some elements of my life that are not illness-related have been shifted out of focus for now, so they are portrayed that way in this image. I'm a visual artist in real life, and I used to work in kitchens as well until I couldn't. So elements of those lives are shown here, sunken to the bottom, with the focus being on the medications and the ice. My face is also somewhat out of focus for the same reason.
I do hope this image will be taken as it was intended -- a visualization of a bad day for a chronically ill person. I'm aware it could potentially be perceived as a substance abuse thing, so I wanted to be sure to include some info on my perspective and experience here. Just a bad day. I hope you can't relate, but if you can..... this is for you.
Wearing:
Head: Lelutka Halle
Body: Maitreya Lara
Hair: no.match - NO_CHEESE - Pack of BLACKS
Hospital gown: Sloppy Seconds - Women's Hospital Gown
^the mp listing for this did not say if it was rigged for mesh bodies but a reviewer said theirs worked well on Maitreya so I took a shot. It does in fact *not* work for *my* Maitreya body, and this took much editing to make it look like it does lol. So, just be aware, this is standard/system/XS-S-M-L sizing. But it was the only hospital gown I could find that actually looked like a hospital gown.
Mask: *Strela* - Medicine mask simple Blue
The build:
Room/background: ANTINATURAL[+] - Hospital for Souls - Hydrotherapy room
Bath tub: Schultz Bros. - Cast Iron Bathtub - Stone
Orange & white pill bottles: LD Mesh
Ice cubes: cYo - icecubes
Pepto: Grim Factory Outlet - Pepto bottle
Zanny bars: National Prefabrication - Xanax Tablet
Blue pills: Coffee Stains - Oxycodone M30
Camera: Apocolypse Zombie - Old Camera 124G
Hour glasses: Muniick - Llewellyn Desk Hourglass
Mic: MoYne - Stage microphone
Knife: Angry - Kitchen knife
... to explore without fear of fatigue or falling
... to keep up with your infuriatingly long-legged partner
Allodynia is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site.
It invades me without warnings. It might be an MS symptom that everyone with this disease feels. It might sound like an excuse to many people. Who doesn't need one more hour to sleep? Who couldn't use 10 more minutes of rest? But It goes beyond that. MS Fatigue is different from regular fatigue. It's more intense, It's connected to heat and humidity.
It stops you from your regular responsibilities. It's an invisible, powerful force that drains you. I can have a good night sleep and in the middle of the morning feel exhausted. I battle with myself everyday to stay active and not surrender. The sun could be shining bright, your day filled with experiences to be lived, moments to be seized and your dreams to be accomplished, but if your body says no, your life is on hold. MS Fatigue is frustrating.
Numbness has been a part of my MS journey since the beginning. I experienced it in many levels and in different parts of my body, such as my feet, legs, arms, hands and areas of my torso. When I was in my worst shape before I got diagnosed, almost the entire left side of my body was numb.
The image I used for this symptom exemplifies not only the numbness, but something else called Dysesthesias. It's a hot/cold sensation on the area of the body. The sensation was so aggressive that it was like it was burning my skin nonstop. It lasted for days or weeks.
This was the only photo I posed myself for this project. My husband captured exactly the way I had in my mind. It was my first idea for this symptom since the beginning of this project three years ago. I knew I couldn't ask anyone else to go that far. I had to wait for the snow to come. There was no other way I wanted it to be. It had to be real to feel real.
I feel extremely glad that after being treated I didn't feel this anymore.
2024 was a rough year for us. However, I really can’t complain too much because some really good things happened, as well.
The best part of the year was adopting Torvi. She’s been such a radiant beam of sunshine in our lives and fits in perfectly with our weird little family. We love her so much!
While we weren’t able to have as many adventures as we would have liked with our camper van, just bringing it home was definitely a highlight of our year. Plus, we were still able to have some adventures with it, all of which were awesome.
On a similar note, all of the time Mike and I spent together (and with the kitties) is always a good thing, whether it’s hiking, biking, or just hanging out and playing a card game.
Another great highlight of the year was that I switched jobs! After 17 years in the same one, I was beyond burnt out and ready for a change. My new job is exactly what I was looking for and I’m extremely grateful for it.
The last good thing about this year was that after 7 months of terrible digestive issues, I finally received a diagnosis and am now recovering from a surgery to fix things. Having a chronic illness means dealing with a melodramatic body and despite taking care of myself, issues sometimes pop up as a complication of my illness. It’s a huge relief to be moving on from this!
Here’s to health and happiness for everyone in the coming year!
Fibromyalgia can cause cognitive dysfunction, also known as fibrofog. Fibrofog can be characterized by impaired concentration, problems with short and long-term memory, short-term memory consolidation, impaired speed of performance, inability to multi-task, cognitive overload, and diminished attention span.
It's impossible to have this disease and not have your emotions affected by the ups and downs along the way. The emotional changes can be triggered anytime. Sadness, irritability, worries, anxiety, depression are all common. My experience with those mood changes started very subtle and happened within the past 2 years. First I realized some sort of sadness started. It started out of nowhere. It was like a grief and that was enough to change my mood completely. I remember my husband looking at me and saying, "What happened? You were great 5 minutes ago."
I started analyzing myself in order to identify how the mood change was triggered. Then I try to stop it from happening because I knew that it would ruin my day and upset people around me. I was determined to not allow it. I learned to read myself.
Anxiety is what affected me most. I had a counselor for a while and now I take medicine for it. I thought I'd go crazy. My mind was restless with thoughts, questions and worries about everything. A simple question such as "who am I?" would run around my mind an entire day. I wouldn't concentrate in anything else because of this one single question. I was afraid, nervous and terrified about losing my sanity. It was one of the worst experiences that I had. I looked for help. It's very important to be open about what's going on and not be afraid to ask for help. I had great doctors that helped me to go back to myself and life goes on.
Illness is an interesting journey.
I managed to escape COVID so far until late last week, but that's not entirely what this image is about. This is something I've been wanting to portray somehow for a while, and being in quarantine again had me thinking about it.
I got Lyme Disease some years back, defined here by the CDC:
"Lyme disease is caused by the bacterium Borrelia burgdorferi and rarely, Borrelia mayonii. It is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans."
Those symptoms are what can be (but not always) noticeable when the infection first happens, but the possibility for damage and the scope of that damage changes depending on how much time passes between being infected and being treated. Time also complicates the efficacy of treatment, and how much medication may be necessary to kill off the infection. If you're curious about what other symptoms there can be, there's a lot of resources on the interwebs. I'll spare folks that bit here.
The bacteria is still detectable in my system, though no longer considered active or alive, thanks to the treatment I went through. My GP and I estimated though that based on symptoms, I likely had it for between 3 and 5 years before she caught and treated it. It affected many systems in my body, and continues to impact me now.
Getting other illnesses on top of all the other stuff that's going on with my body tends to amplify a lot of that underlying stuff. Thankfully I've had 4 vaccinations, so my experience with COVID has likely been a lot better than it would otherwise have been. Getting the 'rona has definitely flared up a few existing things for me so far though, and because of that stuff, I'm aware of the possibility that I may remain in a flared up state for a while even after I test negative.
One thing I've learned through my chronic illness journey is that it's important to advocate for yourself. You actually kinda have no choice, and there's a lot of work to do, hence my portrayal as both provider and patient.
Heal thy self, right?
Head: Lelutka - Halle
Body: Maitreya - Lara
Skin: MAZE - Frankie skin - Tintable version
Hair: Wasabi Pills - Jen
Cap: Statura - Nurse's Cap (textured by me)
Dress: Apple Blossom - Mera
Stethoscope: [CX] Vicious Vaccine - Stethoscope ( Black )
IV bag & line: Insomnia Angel - Rose pickled blood pack [poison]
Shoes: West Coast Influenced - T-Strap Wingtip
Rings: (Yummy) - True Rebel Ring Set - Maitreya
Fishnets: {Nena} - Fishnet Tights v1
Lips: Magnetic - Lipstick Smear
Room: ANTINATURAL[+] Hospital for Souls / Hydrotherapy room
Lights: [inZoxi] - CC2 Tri-light (tinted by me)
Lamps: Apple Fall - Joanne Crystal Lamp (tinted)
Gurnie: Aquatica Mesh - AM025361 Guerney bed and Bodyboard
new shirts from VogueHK on etsy and books from swaps with Colibry Julia , @queen-of-meows, & @modernwizard.
“I asked God for strength that I might achieve. I was made weak that I might learn humility. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am most richly blessed.” (source unknown)
The Kiss Goodbye to MS daily photo challenge has given me such a wonderful opportunity to post images to raise awareness, share words I have rarely spoken since diagnosis, to read heartfelt words from others as they share their support and stories of chronic illness. There are many unspoken words ... there are feelings inside me right now that have no words.
My current pledge is $325.50
Share an image with the pledge to kiss goodbye group. You will help to raise awareness while boosting my personal donation to MS Australia at the end of this month.
Donate to my fund raiser's page Palo's Pledge. All funds go directly to MS Australia to further research and to provide service to those affected by MS.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
It's the struggle to concentrate. Forgetfulness. Difficulty to solve problems. You lose track of conversations. Tasks that are simple can be difficult. Things you knew by heart get lost. It's like when making a simple old recipe I have to remind myself of each step, reading over and over again every line until it's done. I started experiencing Brain Fog sometime after my diagnosis. The signs were subtle and it took a while to realize that something had changed. Following directions, confusion to understand what I'm reading, forgetfulness, getting lost in the middle of conversations are part of my struggle. There are several moments I find myself in a conversation and suddenly my mind drags me to another place. My body is there. There's eye contact, but my mind is not there. The connection between me and the other person is slow. Sometimes it makes me feel embarrassed to ask people what we were talking about. Somehow I was present, but not present. It's like the mind is full of infinite boxes, one inside the other. The strangeness of this disease made me question myself about anything and everything in silence.
The Kiss Goodbye to Multiple Sclerosis campaign closes out on the theme - MS Awareness. I have been humbled by this experience and the ways in which I have been supported to raise awareness about this disease.
With my deepest gratitude, I pay my respects to:
each of you that has followed this campaign - your words of encouragement, sharing your deeply personal stories and the way in which you have supported my pledge through your views, comments and faves. With one day of viewing left, my pledge is $759.60. I will announce the final result tomorrow at the end of the international day for 31 May 2013.
each of you that helped to raise awareness through the pledge to kiss goodbye group. So many beautiful pictures, so much creativity! Based on a count yesterday afternoon, the 382 photos there have received over 44 thousand views. Can we make it 400 photos by the end of the day? In some countries around the world, the group even appeared on the front page of yahoo. Raising awareness can be done through small individual actions - if there was ever a reason to believe that change can be made though the collective power of an individual's small action then this is one example.
to those of you who extended your generosity by making a donation to my fund raising page. Thank you does not cover my appreciation enough.
to Marty and M8 who are my pillars of support in sickness and in health.
and finally I pay my respects to my disease that has taught me so much about life. Multiple sclerosis has given me such an awareness about what is important for this day, and in this moment - and for those reasons, I consider myself truly blessed.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
Dear MS,
You have short-circuited your way into so many lives. Regardless of your embrace, I SHARE their wish. I DARE to live life well! I will WEAR high heels and dance again! So there is nothing personal when I say, I choose to walk on by and KISS YOU GODDBYE.
How you can help to Kiss Goodbye to Multiple Sclerosis
By donating directly to MS Australia on my fund raiser's page Palo's Pledge.
Posting an an image showing support to my pledge to kiss goodbye group. In doing so you help to raise awareness while boosting my personal donation to MS Australia at the end of this month.
By simply viewing this image you are making a contribution. My personal donation currently totals : $215.80
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
Insomnia, or sleeplessness, is a sleep disorder in which there is an inability to fall asleep or to stay asleep as long as desired. Insomnia is common among Fibromyalgia patients as many patients find it hard to fall asleep because of their pain or wake up multiple times per night from pain.
Today was cool! I participated in a contest and even though we didn't win, I enjoyed myself and built some confidence back again.
what's it like to have an infinite amount of spoons?
i literally cannot remember.
checkkkkk the blog for a before/after :P
karma-photo.blogspot.com
“I’m restless. Things are calling me away. My hair is being pulled by the stars again.” -Anaïs Nin
For the past year, I’ve dealt with a very demanding job while being a caregiver for my elderly parents. Our adventures, as a result, have been limited. To help with the stress, I asked for a demotion at work. While my boss didn’t want to lose me in my current position, I was very lucky that she was 100% supportive of me and helped me get the position I was asking for. It was one of the best decisions I’ve ever made and now that I’ve been doing it for a while, I would never go back to my old job.
Just this one change has freed up a lot of time for me, allowing for us to start taking more adventures again. Lately, I find myself itching to take a longer adventure, something we haven’t been able to do for quite a while and, to be honest, I just haven’t had the energy for until recently. Stress + an autoimmune illness leaves me being more of a homebody, but I’m ready to take a long road trip again. I’m definitely restless for one!
Notebook from Top Flight, bandana from Bioworld.
My personal experience is that MS has become an acute barometer for my state of well being. I used to try to be a superwoman, I disrespected the signs when I was under extreme stress, I ignored the signs of not caring for myself and my body. MS changed all that. To live well with MS, I can no longer even pretend to be a superwoman - it took me most of the afternoon to recover from this flighty jaunt in the park yesterday. To live well with MS, I am more attuned and when I fall into old habits, my body quickly tells me with fare ups and I pay a price for not living well.
9 days left to share and image with the pledge to kiss goodbye group to help raise awareness about MS.
I also have a fund raising page, Palo's Pledge, that accepts donations on behalf of MS Australia to further research into this disease.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
“I want to be alone…with someone else who wants to be alone.” -Dimitri Zaik
After being without a van for almost 2 years, we’re very happy to have one again!
It’s much easier to keep hydrated & keep up on my health routine traveling this way. That means I feel much better overall & don’t risk flare-ups with my chronic illness as much.
We also don’t have exposure to cleaners & other chemicals lodgings use, which we both react to. Breathing easier is a huge bonus!
A van also lets us stop to rest when needed, regardless of where we are & the weather.
One of the biggest perks, though, is that we can stay in nature & solitude more. Decent lodgings are often in cities or have a lot of other people around. This is much more our cup of tea!
... vulnerable and not always as strong or courageous as people may believe.
To be honest ... this has been a tough month and more emotionally challenging than I anticipated at the onset of this campaign. I normally do not try to spend so much time thinking about multiple sclerosis or try to dwell on the impact the disease has had on me. I could have taken on this project superficially, but it was an opportunity to reflect, to dig deep. In that process, I have discovered some things about my life, relationships and my own coping strategies that have been confronting and uncomfortable. It will take some time to digest those truths and to decide how I move forward from here.
On the flip side, the support from you all has been equally overwhelming and I sincerely thank you all for engaging in this project.
Every view, fave and comment adds to my pledge to the KGTOMS campaign. The current tally is $618.50
Only 5 days left to share an image with the pledge to kiss goodbye group to help raise awareness about MS. Thank you to everyone that has contributed so far.
I also have a fund raising page, Palo's Pledge, that accepts donations on behalf of MS Australia to further research into this disease.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
It's been a while since I've shared anything here, but I felt compelled to share this image (and its other half) along with an explanation of my inspiration for them. You can find the second image and what I've written on my blog. Thanks for stopping by!
In the galley, there is a large sink, microwave, and induction stovetop. We especially love that it has the stovetop because this will give us more options for eating healthy and we can now cook no no matter the weather (we only had an outdoor cookbook with the old van). There is also a fridge that’s a bit larger than our old van as well as a water heater, which is something we didn’t have in our old van. Having hot water will be very welcome! Besides being able to take showers, it’ll make washing dishes easier and help us keep clean overall.
The door to the right is the wet bath. Not having a bathroom in our old van usually wasn’t a problem, but there were a few times when we really could have used it. It’ll help during emergencies and will also allow us to boondock longer while staying cleaner. Body wipes can only cut it for so long! We have a larger water tank than we did before, too, which is a welcome upgrade.
This van also has a heater and air conditioner, two more things our old van didn’t have. Due to my chronic illness, my body doesn’t regulate extreme cold or heat well. Having temperature control will help tremendously and give us more options for where we visit since we won’t be as dependent on the weather. In the past, we’ve had to cut a few vacations short and head home because of it being too hot for me to tolerate while having no way to cool off.
The couch in the back has ottomans and reclines, so we can get very comfy. It also turns into a comfortable queen bed. We both need this and as we get older, that need will only increase, especially after driving a lot or being active. Good sleep and rest can make a huge difference in how anyone feels.
A huge upgrade with this van is the power system. We now have propane, the batteries are larger, the roof has solar panels, and there is a built-in generator. We can be off grid for a long time before running out of power! Update- we have found that the solar makes a really nice difference in how long the power lasts!
We’re also loving having more headroom and a hard top. While we enjoyed having the pop top of our old van, we much prefer this. Mike doesn’t have to duck down, the hard top makes things quieter (having the pop top up was basically like sleeping in a tent), it’s something that’s not dependent on the weather, and we don’t have to worry about it breaking. Another bonus of the hard top is that the awning will cover the entire side of the van when it’s really hot (the sun came in with the pop top up and roasted us at times).
We’re thrilled to have this van to adventure with!
In support of the Kiss Goodbye to MS campaign, I am making the following pledge for the month of May. I will personally donate to the campaign 5c for every view, 10c for every fave, and 25c for every comment that is left on my posts dedicated to this campaign during this month.
If you would like to support the raising awareness of MS, I invite you to join Pledge to Kiss Goodbye which I have set up. There are 31 themes based on the clues from the official MS Australia campaign. For every person that joins the group and posts at least one photo that relates to one of the themes and raises the awareness of MS in their description, I will donate 50c to MS research. If you post at least 4 images during the month of May relating to the themes and raising awareness, my personal donation will increase to $1.00.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
This image is part of a private collection from Dragon Papillon Photography and is protected under Australian and International copyright laws. Copying, duplicating, sharing or saving as a digital file, printing, manipulating, transmitting or reproducing this image without written permission from Dragon Papillon Photography is strictly forbidden and would constitute a breach of copyright.
Website: www.dragonpapillon.com or follow us on facebook
While I consider myself outdoorsy and would love to go backpacking, sleeping in tents under the stars, that’s just not in the cards for my outdoor time.
I have a chronic illness, and roughing it can unfortunately cause flare ups for me. As hard as it was, I’ve learned to respect my limits and having a van will help me to travel comfortably while giving me peace of mind.
If I do have a flare up while traveling, I now have a comfortable place to rest no matter where we are along with a bathroom for those times I become ill. I’ve learned to manage my illness quite well and those incidences have become fewer, but no matter how well you travel, it’s always a bit stressful and stress is one of my biggest triggers.
I’m extremely grateful (and, I recognize, privileged), to have this van. While it’s just a thing, it’s something that gives me freedom to satisfy my wanderlust, have new adventures, and create memories with Mike.
Unrelated note- our old van had an outdoor shower, but it was stored inside the back door & was a pain to get out. We never used it because of that. This van has it on the driver’s side (the panel next to the door) and it’ll come in handy when we need to clean off dirty things. It’s much better quality and a breeze to get out. Quite nice!
the prompt BATH in the A-Z Doll Photo group gave me the impetus to finally organize the parts i have been gathering for a nice bathroom. an IKEA shelf is the roombox.
S!M decided to try it out and have a shower.
he has limited energy and mobility these days, but he managed.
Vision problems have always been a symptom that struck me the most. I used to have a blank spot in the upper part of my right eye. I had it for several weeks in different times for too long. The worst part was the doctor saying, "There's nothing wrong with you." I needed help to go to the doctor. I couldn't get there by myself but "there's nothing wrong with me?" Sometimes I used to pretend that everything was ok, going through the day as if I wasn't feeling anything until it was all I could feel. It drove me crazy. It was almost like a white blindness. I felt desperate, hopeless and mad. It was a daily battle of my broken eyes against a perfectly beautiful world.
the red door
i had not seen before
diagnosis
physical, emotional, mental barriers
I can find alternative ways
social, economic, political barriers
a collective responsibility
to gain access through
the red door.
with your support, my personal pledge is $267.30 - thank you.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
note: obviously having a pain flare-up and needing to rest is not the same as being a couch potato! but when i saw the Toy Sunday theme i thought, let's do photos with S!M's new sofa and ... well, this is what happened.
new shirts from VogueHK on etsy and books from swaps with Colibry Julia , @queen-of-meows, & @modernwizard.
Copyright © Stewart Lamb Cromar 2022 CC BY.
This work is licensed under a Creative Commons Attribution 4.0 International License.
creativecommons.org/licenses/by/4.0/
One year ago today I had my fifth surgery for a recurring detached retina.
It has been a journey and it is still very challenging adapting to partial vision loss, only last week I had a wee fall and injured my left hand due to impaired depth perception.
However, I am truly grateful for the NHS professionals that helped me retain what eyesight I have today.
I strongly believe building with Lego bricks has improved both my physical and mental well-being.
It has been a fantastic 12-months Lego-wise, with my University of Edinburgh library model raising over £2K for Sight Scotland, getting a MOC displayed in the Edinburgh Lego Store and having my FAB-AT-AT go viral!
My original plan was to write a long-form blog post to positively mark the occasion. But work has been taxing and I’m limiting my screen time wherever possible, so this micro post will have to suffice for now.
Thank you to my family, friends and followers for the support this last year.
Leg godt!
Love, Stewart ❤️💛💙
#Lego #レゴ #Afol #Fabuland #ファビュランド #SightForSight #SightLoss #Diabetes #T1D #Disability #HiddenDisability #ChronicIllness #InvisibleIllness #VisionLoss #Modulex #TwosDay
I have read so many personal stories this past couple of weeks, and each one has touched me. One of the recurring themes that has come out of these stories is that each of us, at different times in our lives, need hope and validation in order to live life well.
Some illnesses like multiple sclerosis, crohn's disease, fibromyalgia, lyme disease are difficult to diagnose as the symptoms can be mistaken for so many illnesses or it is so difficult to accurately describe what the symptoms are like that often those symptoms are dismissed by ourselves and the medical profession. While waiting for diagnosis we may lose hope and begin to doubt ourselves ... and before long a negative spiral of emotional and mental distress compounds our ability to cope. All we need is hope and validation.
My current pledge is $419.50 Each of your comments, views and faves are contributing to that pledge.
Share an image with the pledge to kiss goodbye group. You will help to raise awareness while boosting my personal donation to MS Australia at the end of this month.
Donate to my fund raiser's page Palo's Pledge. All funds go directly to MS Australia to further research and to provide service to those affected by MS.
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COPYRIGHT © Dragon Papillon Photography. 2013. All rights reserved.
the prompt BATH in the A-Z Doll Photo group gave me the impetus to finally organize the parts i have been gathering for a nice bathroom. an IKEA shelf is the roombox.
S!M decided to try it out and have a shower.
he has limited energy and mobility these days, but he managed.
The next 10 days I'll be sharing a personal project where I expressed my Multiple Sclerosis symptoms through my photography.
The project I titled: My MS Journey- The Pain Behind The Beauty
I had help of my beloved husband and my friend and biggest collaborator, the model Shelby Cross. For more info visit my website to know more details about my journey with MS at am-photography.smugmug.com/Photography-Projects/MyMsJourn...
I felt thrilled that this project was published on a local magazine Coastal Virginia Magazine and National MS Society shared on social media, both Instagram and Facebook. March is MS Month Awareness.
Let's spread the word and let people informed about this disease.
"Tingling"
Like ant crawling on my skin. That's how I always awkwardly described to doctors how I was feeling while trying not to sound like a lunatic. I had Tingling in almost all parts of my body, even my face. The sensation is extremely annoying and lasted for days or weeks just like numbness. I'm glad I don't feel it anymore since I started being treated. My husband, who is an artist, helped me to create the image I had in mind. I asked him to paint ants on Shelby's arms, hands and fingers. He did it beautifully. Those were the spots I felt the sensation most.
How do you live your life feeling such things so weird and complex, and still present yourself to the world as if nothing was affecting you? I think I became awfully used to that strange presence on my body somehow. I learned how to live with that. And the invisible monster could be tamed in some moments.
I've had a terrible migraine all day. I woke up and I could just feel it coming. It starts with a light headache and I just think that I haven't had enough to drink. However, as much water as I drink, it doesn't help. The headache gets worse and worse and moving my head becomes oh so painful. If I have to stand up it feels like a sword is stabbing my head. Even blinking hurts.
What made it worse was that I had an appointment with my dental hygienist and that meant listening to half an hour of a drill and a polisher making noise inside my head. I hate that sound, that high-pitched, nails-on-a-chalkboard-like sound.
I made dinner and continued watching dr. who.
Healing. Week 16 post-surgery. Post- Total Pancreatectomy with Islet Auto-Cell Transplantation. I have an awesome scar. I can't wait for Summer. I'll own a two-piece. The scar is from the pancreatectomy and transplant, the two big holes are from a stomach drainage tube and from a feeding tube (J-Tube and G-Tube), the small scar on the left if from an old drainage tube. The mark on my neck that's still visible if from the pik line (the big 'ol i.v.'s). My arms are battle fields from all the i.v.'s too. Just not as big of holes.
Strobist. AB800 between camera and me, slightly left, diffused with a gold satin sheet; via CyberSyncs.