#hiddenillnesses

[myalgicencephalomyelitiscfstom]

From: "Things Not to Say to People with Invisible Illnesses, Part 3" (MAY 1, 2022) https://missdiagnoses.com/2022/05/01/things-not-to-say-to-people-with-invisible-illnesses-part-three/

[jendotcohen]

I really needed this today 💜 #Repost @thepotsiepanda ・・・ 💫Shout out to those who.. 🌈Have invisible symptoms 🌈Are battling a flare up right now 🌈Suffer from pain without diagnosis 🌈Are struggling with mental health 🌈Haven't found a treatment that works ❤You and your symptoms are valid. ❤You deserve to be heard. ❤I hope you find some relief soon. 📸Thankyou to the incredible @chronicverse for this amazing post. #ChronicShoutOut #ChronicIllness #HiddenIllnesses  #ChronicIllnessWarriors #InvisibleIllnessClub #ChronicIllnessAdvocate #InvisibleIllnessAwareness #DisabilityAdvocate #DisabilityAwareness #ChronicPain #ThisIsChronicIllness #ChronicPainWarrior #ChronicPainFlare #PotsWarrior #FibroFighter #ChronicPainFighter #FlareUpsSuck #Spoonie #SpoonieWarrior #LowOnSpoons (Image description: Set on a cream coloured background. The headline reads, SHOUT OUT TO THOSE WHO.. There are 5 images of different coloured rainbows that say different things. These are as follows, ●Dark pink, purple and light pink rainbow- have invisible symptoms. ●Pale blue, baby blue and grey rainbow- are battling a flare up right now. ●Pale orange, brown and dark orange- suffer from pain without diagnosis. ●Pale blue, lime green, darker green rainbow- a suffering with mental health. ●Purple, pink and light purple rainbow- haven't found a treatment that works yet. End of description.) https://www.instagram.com/p/CpApAYCu1Ut/?igshid=NGJjMDIxMWI=

[raseforcrps]

Posted @withregram • @invisibledisabilities EXCELLENT NEWS! Invisible Disabilities Symbol signed into law on June 30, 2021 by Governor Jared Polis! [Symbol is optional and voluntary]. Colorado’s HB21-1014 Disability Symbol ID Identification went into effect July 1, 2022. The bill adds the voluntary option for a person with a disability to request that the Department of Revenue place a discreet disability identifier symbol on the person’s driver’s license or identification card. The symbol represents all types of disabilities, such as cognitive, neurological, or physical disabilities. This has been available in Alaska and was also just passed in Utah! The Invisible Disabilities Association is in conversations with other states, too. For more info NationalDisability.ID It takes many, many hours and lots of funding to create bills and bring awareness, education, support and resources. Please consider supporting IDA monthly, yearly or through our annual IDA Awards Gala Fundraisers. IDA is working hard to make a difference in your community and around the world! Thank you! The IDA Team Invisibledisabilities.org #invisibledisability #invisibledisabilities #nationaldisabilityid #chronicillness #chronicpain #hoh #autism #hiddenillness #invisibleillness #legislation #dmv #stateid https://www.instagram.com/p/Cgujs9aOZlC/?igshid=NGJjMDIxMWI=

[milkymoles]

Starting to feel some relief. I’m going to try to lie down and relax now. To explain how I forgot to take them, it’s a few factors… 1. I fell asleep before they were due, waking a 2am. 2. I am in increased pain for the past few days, so didn’t recognise the warning signs. Also please note, that all my medications are in daily dose boxes that are divided into four, it is bad to forget them, it would be worse to take them more than once. #selfprotection #hiddenillnesses #memoryproblems https://www.instagram.com/p/CbB-2o9jxLO/?utm_medium=tumblr

[hepburn-and-leigh]

One of our biggest and most significant projects of 2017 was the #KissMeDeadlyLingerie shoot themed around #HiddenIllnesses. With top photographer @claireseville behind the camera and @sammmagnew in charge of hair & MU, we headed for the #ArtDeco splendour of @fontainesldn to dress and shoot six fantastic KMD customers and interview them about their hidden illnesses. Some of the shots are yet to be unveiled, but you can read and view half of them so far on KMD's blog: https://www.kissmedeadly.co.uk/blogs/news/whats-our-secret-hidden-illness #lingerie #mentalhealth #bts #behindthescenes #retrostyle #vintageinspired #instalingerie #lingerieaddict #lingerielife

[orangefruitcakeart]

Happy #witchywednesday This beautiful little book arrived here at The Burrow today. I haven't given it a proper read yet but it looks like it's exactly what I need right now, and I'll be dedicating a lot of tomorrow to reading if I can focus. . It's got lots of practical exercises, I got it off Amazon so it's nice and accessible. #thewitchesbookofselfcare #arinmurphyhiscock #thegreenwitch . . It fits in well with #meetthemakermarch to confess my journey into becoming an Artist as a job stemmed from my mental health issues. I had some time out of work last year and I've been gradually building myself back up. It's been so helpful structuring my time around creating. And I'm finding nice little books like this to help me stay on track. . The brain spiders are causing havoc again at the moment and I'm a little less productive than usual. On a good day I can make 4 pet portraits one after another. At the moment it's taking a week to finish one, so have patience. . Remember, you never know what someone is going through. Depression and anxiety are one of the many #hiddenillnesses out there. Be good to each other. #itsoktonotbeok . #selfcare #loveyourself #depressionandanxiety #mindfulness #onthemend #bekind #witchyreads #wiccan #pagan #alternativehealing #meditation #magicalhealing #innerstrength #herbalhealing #artistproblems #strugglingartist #meettheartist #artiststruggles #everythingsfine https://www.instagram.com/p/Bu-3NNylX2H/?utm_source=ig_tumblr_share&igshid=1bkyycw1pwz7a

[nme-flow]

happy caturday lovelies! . Ms. Aster was waiting impatiently for me to turn the fans up when I got home today. But the landscaping is starting to bloom and I had to capture it. I need to bring my ac up, if not for the human's sake, for the kitties in this heat. . Does anyone else loose spoons in hot weather? I think they just melt. But I'm hoping that in two weeks I have some more answers about why my spoons are limited. . Night lovelies! Stay cool. Stay safe. . . . . Black lives still matter and will be the focal point until we revitalize our society for equality. See also alphabet soup land (lgbtqa+) are also real and valid and need medical and legal rights. As do women and people with uteruses. . . . . . . . #Maine #cats #caturday #flower #plant #lily #spoonie #heat #hiddenillness #cfs #blm #lgbtqia #alphabetsoup #humanrights . . (at Bangor, Maine) https://www.instagram.com/p/CBrCGRMBtbz/?igshid=14grapvgisw2g

[thegoldenlily3]

Part 2/2 My Story 2019

Trigger warning/graphic photos ahead

My goal for 2019 was to sell our house and try to get pregnant. I was told by my surgeon that I should have a baby before I reverse my ileostomy. Even though my colon was removed in 2017, at this time I still had my rectum with active UC(Ulcerative Colitis). My surgeon said I couldn’t wait more than 10 years to get this removed and my ileostomy reversed because the disease can affect other parts of my body. Even then, I am not 100% cured. Since UC is an autoimmune disease, I will always have issues in some way. The disease manifests in ways other than bleeding ulcers in the colon. I’m prone to mouth ulcers because of this and I also believe, although I’ve not read this to be proven, that my skin issues are also a manifestation of my autoimmune disease. I deal with this later on in 2019. I’m also always tired and exhausted from all of the pain both mentally and physically.

At the beginning of 2019 my skin issues around my stoma continued to be bothersome. It had been months and months of having issues with my ostomy bag not wanting to stick and my skin oozing non stop. It wasn’t like I could just treat the skin and be done with it. Anything I would put on my skin would interfere with the adhesive of the bag. So I would cut around the edges and basically jerry rig my appliance so that I could treat my skin in different areas with each bag change. I will say this. For 2 years of having this ileostomy and all of these issues, I only ever had one leak; meaning I only had stool push through the adhesive and get all over me one time. Just one. That is actually really really good. My support groups are full of people that have been worse off than me. I was also fortunate to only have to change my bag once while in public and it was at work. I found a single person bathroom with a sink to use. My surgeon once told me that my stoma was very pretty and she herself thought she did a great job. She was an amazing surgeon here until I got a letter saying she was moving out of state so I needed to find a new surgeon. That was devastating and I definitely cried over it knowing that I would have to start over with someone new.

In April 2019, I finally had allergy testing done. I was actually supposed to get this done in 2017 but they called while I was in the hospital. So the first round of allergy testing was all environmental. They put these patches on my back(not what’s pictured) and they read them same day. They were all negative. Then they used needles to put the most common environmental allergies on the inside of my forearms. I wish I had pictures of that. This may sound like it was painful but it really wasn’t at all. The needle only goes through the surface of the skin. I had so many needles stuck in me in 2017 that I didn’t think twice about this test. This test was also negative. So great news, I have ZERO environmental allergies! A few weeks later, I had the chemical allergy test done. This is the white patches on my back in the picture. I had to go home with these patches on and come back in 2 days and have it read then. I wasn’t allowed to shower through that time nor was I allowed to sweat so I couldn’t go to work. Good thing I’m also a side sleeper. After they read the results, I had to come back in the next day and they read them again. Guys, I’m allergic to some pretty weird stuff:

• Balsam of Peru

• Benzoyl Peroxide

• Butylphenyl Methylpropional

• Carba Mix

• Cocamidopropyl Betaine

• Coconut Diethanolamide

• Compositae Mix

• Decyl Glucoside

• Fragrance Mix

• Iodopropynyl Butylcarbamate

• Nickel Sulfate

• Paraben Mix

• Propolis

• Propylene Glycol

• Thiuram Mix

• Ylang-ylang oil

May of 2019 was a pretty good month. Although I don’t have pictures of it, we went to Tappers Arcade Bar with some friends and we decided to ride the scooters around. The entire time I’m riding, we’re looking for a scooter that wasn’t dead for Issaac to ride. We came across the guys who picked them up and charged them and they started to help look. One of them got on a scooter and was riding pretty fast. We were in this narrow sidewalk and he came flying on my right and I got scared and ran into the half brick wall on my left. I scraped my ankle a little bit but I was pretty much fine. That is until I lifted my shirt...I did that, annnnd my bag fell on the ground in front of everyone. I immediately pulled my shirt down and laughed. For a second I didn’t know what to do and I was like oh I should probably pick that poop bag up off the ground before that guy comes over. I quickly grabbed it and he rushes over. He’s freaking out and worried I got hurt because of him. I reassured him that I was fine. The whole time he’s coming towards me I’m quickly walking towards Tappers while hiding my ostomy bag and my friend is with me the whole time. At this time I was wearing a two piece system so usually I’d be able to click the bag back on. When I hit the bricks, it broke the plastic so I wasn’t able to put the bag back on. Tappers was a ways down the street and we went to the bathroom and Issaac ran to the car to get my supplies down the block. Why he didn’t use a scooter I have no idea! And it turned out I still had the car keys. So my friend came in the bathroom and got the keys for him. She then returned and helped me because I couldn’t really do this on my own without doing it in front of strangers. I basically had my shirt covering my stoma so it got poop all over it and I needed help getting it over my head without it getting all over me. I was actually laughing a lot about this. I just thought the whole situation. Was hilarious. And I had a really fun time on the scooters.

Although in May I had a good time, I was still struggling with my skin issues. My allergy test didn’t really help in that area because a lot of companies won’t release all of the ingredients to their products. So it was then after very hard consideration and talking with Issaac that I decided it was time for a reversal. This meant that I was putting myself at a high risk of not being able to get pregnant. My GI doctor had told me at the beginning of the year that it was probably time to do it now rather than later because I was having a lot of abdominal pain with no explanation. It turned out that my diseased rectum was causing me a lot of pain and I had an ovarian cyst that had burst. So there are a lot of options for me if I can’t get pregnant. I’m a big proponent of adoption. I’ve also thought about IVF and surrogacy. All of these options are really expensive though.

On June 20th of this year, I had a Proctectomy, with a rectal mucosectomy, ileoanal anastomosis, creation of ileal reservoir (JPouch), with a loop ileostomy. In simpler terms, I had my the rest of my rectum removed which was about a foot long. I had my stoma stapled shut and put back into my stomach and my small intestines pulled down to my butt. They used the end of my small intestines to create a j shaped pouch that will act as a new rectum. Then they took a different part of my small intestines and created a new loop ileostomy. My previous one was an end ileostomy where the end of my small intestines was the stoma. A loop ileostomy comes outside and then back in but still with only one hole for output. It’s much smaller and a lot harder to handle. A loop ileostomy is required so that my jpouch can heal.

My recovery from my first surgery was hard because I was so sick beforehand. This surgery was hard in different ways. I had a different surgeon so he put me on different meds that I had never been on before but he was a great surgeon. I remember one was Gabopentin and I can’t remember the other but I was also on 3 different nausea meds. I ended up getting very very sick and I couldn’t eat my food. Imagine throwing up immediately after having abdominal surgery. I thought that I had been through the worst pain but this was just awful and I remember it very vividly. Issaac would hold a bowl for me because I couldn’t. Then a doctor came in who for some reason I thought he was there for pt but he wasn’t. I still don’t know what kind of doctor he was but he was just there to check on me. I started to throw up while squeezing a pillow into my gut and he held the bowl and held me up. He continued to hold me up and I just kept throwing up to a point where it was just stomach acid. He was the only reason I didn’t fall out of the bed. That there is a great doctor and I can’t even begin to express how grateful I am that he did that. I know it’s his job to be there for his patients but I feel maybe it’s not normal to go home and say you held someone as they threw up over and over and over. I imagine I can find out who he is now and thank him again. So out of the 3 nausea meds, only one really worked but I can’t remember what it’s called. I felt that the new meds were making me sick so I made the nurse request them to be switched to morphine and Oxy like before, only because I knew I reacted well to them. After that, I never got sick again and was able to eat. Another thing that was different with this surgery was my shoulder pain. It was very uncomfortable and I had never felt anything quite like it. I had to use ice packs and lidocaine patches to battle that pain. I guess the pain was from gas that they had injected into my incision after cutting me open to expand the area.

When I got home, I had severe issues with my stoma that I didn’t realize before because the inpatient stoma nurse would change my bag and didn’t say anything about any problems. The sutures had failed all the way around and created what looks like a moat around my stoma. This caused the nerve endings to be exposed and it looks blood red in the photos. Then, my incision glue came off and my incision came apart. For this surgery, they went through the same incision from 2017. My incision created a hole and got pretty deep but not deep enough for reconstruction. I went to see my stoma nurse and she was a God send. She showed me what to do and I had to change my bag style to a deep convex to help get my stoma more above my skin level. The convex basically pushes my skin down. It took me awhile to get a handle on changing this bag with this stoma. My output was much thinner and more frequent because my stoma was higher up in my intestines. My stoma was also much lower on my belly and in a dip of my stomach which also caused problems. The surgeon couldn’t bring it any higher. Because of where my stoma was, I had to have Issaac help me change my bag. He has been great throughout all of this. I would shower and he would set up a station with everything needed to change my bag. I would cut everything and apply everything but he was essentially my eyes for where I couldn’t see. I couldn’t hold a mirror and apply everything because I was laying down. Before with my old ileostomy, I could change it standing up within 5 minutes. This ostomy had me in tears so many times. There were a few occasions where it took us up to 5 hours to change the bag because my output wouldn’t stop. *** In the pictures provided, you can see where my original stoma was and there’s a ring of damaged skin around it where my appliance was. My skin is starting to heal and scab over. It took a couple months for that to go away.

To prepare for my next and final surgery, I had a procedure done called a Contrast Barium Enema. They laid me on my side on the CT bed and inserted a tube into my bottom and injected contrast. They then took xrays while moving me in different positions. This was pretty uncomfortable and I hope to never do it again.

Pre op: Today September 26th, I’m having a loop ileostomy takedown surgery and a flexible sigmoidoscopy. And of course this morning I started my period and am having full on symptoms with cramps and fatigue. No wonder I haven’t felt good the past couple of days. I woke before my alarm this morning. I didn’t sleep well. I’m nauseous and I guess it’s because I’m scared? I don’t know if I’m scared of the surgery itself or if I’m scared of afterward. I think it’s the latter. Right away I told the nurse that I’m a hard stick so she called the team with the ultra sound so as to not waste time with my iv. I really appreciate that. Now it’s just waiting in bed until they get here. 🤘🏻 So a nurse decided to poke me anyway and failed. I do have an iv now in my upper left arm that was done with the ultrasound machine. I’ve got the nausea patch on too.

The surgery was a success. It’s now a few hours after. Waking up was really rough. I couldn’t stop crying and I was nauseous and in pain. They gave me Diladid even though I said before surgery that I didn’t want that. Then they gave me morphine and Oxy and it it took awhile but finally I woke up with no pain. I walked to the bathroom with help which was hard. It didn’t hurt to walk but I’m just so out of it. Even as I write this, I’m nodding off. I just want to get everything down before it’s hours later and I forget everything that happened. I’m still waiting on a room but they just delivered me some Powerade Zero. I ordered that but they first brought me regular Powerade and I made them switch it. So I will be in here for a few days, until I have a bowel movement. It feels so nice already laying in bed and not having the weight of the feeling of a plastic bag on my belly. I feel free. It’s just so liberating.

Thank you for reading this far. I just really needed to get my journey out so it doesn’t feel like it never happened. If this helps just one person either mentally or physically then I would be ecstatic. 🤘🏻✌🏻👩🏻‍🦰

[agrownupgeekgirl]

Selfie #me #selfie #pain #hiddenillness (at Ipswich, Suffolk) https://www.instagram.com/p/BnJwZOoAGur/?utm_source=ig_tumblr_share&igshid=1bnmk50r4fjxs

[thecpdiary]

My Anxiety Bumps

I deal with anxiety and autism in Covid-19 and if Covid is teaching me one thing, it is that I need to regroup. I need to find a balance; a balance between my anxiety and what I have control over.

There is no getting away with the fact that I deal with a mental illness. I need to continue to work on balance and mental health. No matter what is going on out there, I need to focus on how I can come through Covid.

In recent days, I have felt less anxious, less challenged, and better for it. It takes me ten times the effort to show up. Where I am affected through autism and anxiety in Covid, I need to continue to focus and find ways through.

Life isn’t a straight path, but I have been through so many bumps already. Because I am choosing to stay safe, Covid should be easier to navigate. I am both mindful over what I choose to do, and where I choose to go.

I find it difficult to hear about the external decisions and find a place for those decisions. I can work through through some of the bumps in the road to see the positive, but that depends on what those decisions are. Not of what is happening externally is common sense.

Through my intuition and in my personal life, I can deal with the smaller things, rather than allow those things to control me. It is important I continue to work on calm, so that I can be more at peace with myself.

As I retreat I am able to strengthen my resolve and that strengthens my mental health around anxiety and autism, it is in those times that I have more confident days. My books continue to reign me in and keep me grounded.

If you’re looking for more info, or fancy grabbing your copy, check out this link – https://linktr.ee/Ilana_Estelle

For more inspirational, life-changing blogs, please check out my site https://www.thecpdiary.com

[i-mpower]

Never lose hope! . . . . . #hope #defeatptsd #ptsd #ptsdawareness #ptsdrecovery #ptsdsupport #ptsdinspirational #trauma #traumarecovery #hiddenillness #avoidance #ptsdwarrior #mentalhealth #copingwithptsd #cptsd #veteranswithptsd #vetptsd #ptsdquotes #survivors https://www.instagram.com/p/BosnHqHBGIv/?utm_source=ig_tumblr_share&igshid=r9vydro6u7p6

[myalgicencephalomyelitiscfstom]

[healthybreakfastclub-blog1]

I believe in doing the best you can in that moment. Some days I feel invincible and others I struggle to get out of bed. I treat them both the same and do the best I can that day!⠀ ⠀ #livingwithlyme #workingfromhome #lymeworking #thisisme #herbalife #grateful #purpose #passion #workfromhome #earningwhilesick #lymedisease #hiddenillness #workingfrombed #truth #authentic #leadership #community #family #healthybreakfastclub #homeoffice #myownboss #entrepreneur #theballantyneimpact #bemore #riseandshine #changeyourworld #businessbuilder #changeagent #gamechanger

[hepburn-and-leigh]

From #kissmedeadlylingerie’s shoot themed around hidden illnesses: Rebecca lives with Ehlers-Danlos Syndrome (check out the Kiss Me Deadly blog to find out more about EDS). Rebecca wears the Beauvoir bra & Rufflebutt bodysuit (the knickers version has just been restocked!) https://www.hepburnandleigh.co.uk/search?q=beauvoir 📸 @claireseville - location @fontainesldn - 💄 @sammmagnew #retrostyle #vintageinspired #pinup #burlesque #artdeco #retrofashion #hiddenillnesses #ehlersdanlossyndrome #instalingerie #lingerieaddict

[ohjessicajessica]

Kickstarter is live! There are 6 designs (symptoms) to unlock all up and I'd love to hear if there are any additional symptoms you'd like included as stretch goals. 💕 Link to the campaign is my profile . . . #pcos #polycysticovariansyndrome #heart #alopecia #hiddenillness #kickstartercampaign #pinlover #pinaddict #originalart https://www.instagram.com/p/CENgDa_hR1e/?igshid=12vaisonxi3e5

[mrsdslifestyle]

R E A L I T Y Today this mama can't even read to her little bump. 36 weeks tomorrow and still struggling with Hyperemesis Gravidarum. People still say: *Are you still sick? *Oh it's strange you still have it *But you're in the 3rd trimester... *But you look so well... *Sure you were out for lunch/dinner... All of the above may be true but yes I still struggle, some days are better than others but I still take my mega strong antisickness tablets every day just to do all of the above and those everyday things people take for granted! People don't see the me who has to lie in bed or on the sofa most of the day in their pj's from the night before with unwashed and brushed hair. An unwashed face and unbrushed teeth because the smell of anything makes me want to vomit! It won't be long until my little man is in my arms and I can read to him without feeling sick hopefully! Now just to rest as much as possible to build my body and energy up for labour, cos right now it's a struggle just to get up and walk for a glass of water! #hyperemesis #hyperemesisgravidarum #hg #pregnantlife #pregnancylife #hiddenillness #hiddenillnessawareness #cancersurvivor #hodgkinslymphomasurvivor #sickness #pregancysicknesssupport #pregnancysickness #reality #pregnancyreality #pregnancyrealness #niblogger #lifestyleblogger #instablogger #nibloggers #mumtobe #mamaandbump #readingtomybump (at Northern Ireland) https://www.instagram.com/p/CDY3HxDh15K/?igshid=xp8013i0n5w4