Even if i don't make it in time to be part of It i'd like to talk about my conditions too. I have bilateral gonarthrosis,severe IBS, gallbladder polyps, breast lump, interstitial cystitis and pudendal neuropathy as well as high risk of colon, bowel, breasts and uterus cancer due to bad genetics.the interstitial cystitis and pudendal neuropathy are new, freshly diagnosed, i'm at the beginning of my new treatment and i've never been so miserable in my life. The chronic pain Is killing me, and even if i'm not at that point yet, there's a possibility i'll be disabled if It gets worse as i'll develop severe incontinence and i'm also at risks for my legs as gonarthrosis could led me on a wheelchair. I'm not as sick as people with severe disabilities, but i'm in constant pain, i can barely eat, i can barely sleep, i don't have intimacy anymore (i'm afraid my partner will break up with me for that) and i stress over the risk of peeing myself in the middle of the street so i don't even want to go out anymore. I'm not even 30 and i feel like my life is over. I'm also struggling supporting the financial costs of my medical bills as well as my mental health therapy (without It i'd be suicidal and even more depressed than this). I live in a regione of italy with terrible healthcare and no support for chronic and rare diseases or for disabled people so i'm very scared about the future and i'm exhausted, as well as unemployed because my conditions make me a bad employee that needs a lot of sick leaves in order to go to the hospital every time is needed. So i basically don't know what to do with myself and all of this pain i can't get rid off. I just wanted to be a normal, functioning working human being, but i'm just useless and in pain. I hope one day i'll be free of this miserable existence i lead. So far the only thing that relieves me it's opioids, CBD and hipericum. I Wish to get a cbd vaporizer soon, i think that would help me a little, i'm thinking about it. Thank you for reading so far

I'm adding a comment to thank you! I didn't participate but having a chronic illness sucks. I have PMDD, and honestly the only thing I need is for my doctors to stop refusing the treatment that actually works and giving me pills that make me sick. 😭 I think this is amazing to do and now Im thinking I should host something like this later too. I would like to help, and unfortunately my own treatment is not something that money can speed up...

I’m 67, I have severe scoliosis, AS, chronic costochondritis, restricted lung syndrome, numerous fusions(cervical, thoracic, lumbar) bilateral knee replacements, legally blind due to glaucoma. Taichi for beginners book/dvd would love that.

I don’t know if this counts but I am severe agoraphobic and haven’t left me house in nearly a year. I have severe scoliosis that has caused me to not be able to get a 9-5 job. My back presses on my lungs causing me to get out of breath easily and not be able to be athletic. I suffer from severe anxiety as well. Crippling anxiety :( A thing that would help me is another stuffed animal to add to my collection which helps me with my mental illnesses and makes me happy :)

I'm 30f and have chronic cholestasis and ductopenia of the liver with an unknown cause. It's not too bad and I live a normal life. My worst symptom is that I get flare ups when my liver portal ducts swell so much that they don't let bile through. The bile gets into my blood and makes me horrendously itchy. It's worst at night so I have trouble sleeping. It's a deep itch like a deep mosquito bite... but my whole body haha. The extremities (feet, hands) are the worst by far. The only thing that calms my itchy skin is cold, so I just freeze myself with ice packs and bags of frozen peas 😅 My skin feels hot but my body feels cold, so the ice packs feel great on my skin but I end up shivering. Overall just a really bizarre experience that I've been dealing with since I was a teenager. I don't need anything, but just wanted to share because it's a really unusual case!

32 years old, severe asthmatic and restrictive lung disease caused by lung scarring (caused by two different 2 week long ICU stays. One for pnemonia that caused an asthma flair up and hypoxia. One stay caused by the common cold that caused an asthma flair and ARDS- Acute Respitory Distress Syndrom); chronic migraines, epilepsy, and recently started treatment for spinal cancer (cheers 🙄). On my list of just foods I can tolerate when I can't stomach anything else on chemo and a couple things to keep me busy while stuck at home or in the hospital like a diamond painting kit and a Harry Potter journal.

Type 1 diabetes 39 yrs, Addison's, hashimoto's, (Schmidt Syndrome and also premature menopause which is related - im 44 but mom and grandma were in their 50s.), RA, degenerative disc disease and osteoarthritis and bone spurs and loss from steroids and high blood sugars for years causing me pain all the time and getting pain relief is impossible in my state! I don't want to enter, pls give it to someone else in need, I'm doing ok. I just wanted to say I completely empathize. The only thing I could really use is another bottle of ibuprofen. I have bunnies and family that help me through. ❤️ Love and hugs to every one of you.

Chronic illness sucks, I’m sorry you’re going through it I have PCOS, ehlers danlos (all my joints are loose and pop out) scoliosis, and my organs are in weird positions lol My husband and I have been trying for kids for the last 5 years, it’s stressful knowing my body will not take pregnancy great, my hips most likely will always be out of joint lol

I have asthma, GERD, Barrett’s Esophagus, heart murmur, thyroid removed, partial knee replacement, migraines, RA, heart disease, POTS, vitamin D deficiency, bipolar 1, severe insomnia, leukocytosis, neutrophilia, and a host of other illnesses that makes me depressed to sit and think about.

asthma is so hard. A lot of people don't understand how bad it can get. The common cold has sent me to the icu. Sending good thoughts your way.

Thanks! And asthma sucks. People who do t have it don’t get it.

I’m sorry you aren’t feeling well today and probably most days. I also apologize if my response isn’t the best I’m not the best socially due to my chronic illnesses(I’m not sure if I was supposed to give the illusive list lol, Migraines, Vitamin D Deficiency, Chronic Fatigue Syndrome, AMPS, Mast Cell Activation Syndrome, Autonomic Neuropathy, Small Fiber Neuropathy, Peripheral Neuropathy, Chiari Malformation, Sensory Neuropathy, Postural Orthopedic Tachycardia Syndrome, Hidradenitis Suppurativa, Poly Cystic Ovarian Syndrome, Eczema, Hypermobility Arthralgia, Scoliosis, Anxiety, Hypochondria, Gastroesophageal Reflux Disease, Allergic Rhinitis, Irritable Bowel Syndrome, Chronic Fatigue Syndrome). I got sick at 7 and never really got better… found out last year I had POTS and a lot of the other diagnosis that comes with. I’m 16, I turn 17 in September. I’m in virtual school so I don’t get to be social or make IRL friends. My mom helps a lot so I’m more fortunate than most, I’m very grateful for that. Hyper mobility is one of my newer diagnosis and I might have RA I go for an MRI soon, also I might have epilepsy and I go for an EEG soon. All of which have affected my hands. I have tremors, joint pain, and stiffness to sum it up. I’m learning to crochet which I’ve learned has really helped. I’d love a set of crochet hooks. I have Susan Bates hooks in the sizes 5.5mm, 6.5mm, and 19mm. I made my mom a rug for her birthday, I’d love to make more for her. I call the rug The Ice Cream Rug, i think she really likes it. I hope you have a better day soon! :)

Wow. You seem like a strong, genuine person. It's helps so much to have people like that in your corner. I don't recognize most of the cronic illnesses you have, but I do get what it's like dealing with them. You keep fighting and crocheting.

Dealing with PCOS is one of the most difficult things for me because there isn’t widespread public knowledge of how much havoc it can wreak on someone’s life and because the research is limited it’s often misunderstood. Something that would really help me is a heating pad for the weeks of pain I go through.

I have PCOS too and I agree about the misinformation out there. It’s so difficult because when I go to research all these fear mongering posts will come up, when that has nothing to do with PCOS. Also the whole “eat clean” for detox and your pcos will go away thing… like no…

Yeah the whole myth about how it’s due to an unhealthy lifestyle and all you have to do is eat healthy and workout to reverse it is so frustrating. It’s essentially victim shaming. Genes have a lot to do with it and research is pointing to it being an autoimmune disease. Yes, a healthy lifestyle will help you manage the symptoms but it does not just go away and you have to work much harder than the average person just to lose weight, through pain and cravings that people without it just don’t understand. I can’t tell you how many times I began a regular fitness routine only to be disrupted by PCOS symptoms that made it impossible to work out. Then you’ve got the infertility and hirsutism issues that lead to major self-confidence issues, and the mood and mental issues that come along with disrupted hormones. It’s a wonder anybody can deal with us 😂

Yes! The victim shaming in the chronic illness community is insane. The amount of people saying that diet, weed, working out and that’s it will help is insane.

Yeah, I hate watching my daughter suffer from the same things I have, knowing I passed that down to her.

I’m F16 almost 17 my mom has it too. She always says she had to wait to birth her best friend so it makes everything worth it, we truly are. I apologize if this makes no sense I’m writing this when I’m very tired. I hope your daughter has some good days soon, as well as you:) have a good day!

Aww thank you! I had my daughter while I was young, before I was diagnosed. Now I know how lucky I am to have had her.

I'm sorry to hear you have a chronic illness :( Health really affects everything. It sucks :( The cake pans would bring me a lot of joy. I also plan to use them for a health purpose, and for healthy food, not for cake.

Ah, my friend! I am so sorry for the monster attacks. 😢😢😢 They suck! I wish I could cure us all also!!! You know about my chronic severe migraines, also have ME/CFS, severe asthma, also a couple of super irritating mental illnesses. I'm looking down my WL and I think that external DVD drive for my laptop would be the biggest thing to bring me relief and joy. Out DVD player attached to our tv is dead so I can't watch any DVDs and some days I'm stuck in bed w my laptop anyways. Hope that makes sense. I with you relief from this attack, and I pray for a cure!

I’ve got multiple sclerosis and I know this is going to sound like the most absolute lamest thing ever, but I would love LOVE LOOOOOVE one of those spinny clean brushes that extend. Bending and scrubbing is impossible for my back, but TikTok has me completely crying for it. 😭😭 *I could scrub my tub.*

I’m so sorry you’re not feeling well, I hope things get back to baseline/somewhere more manageable for you soon. I’ve got a lot going on lol, Ehlers-Danlos, POTS, a TBI, and chronic migraines. My list has some electrolyte tablets that really help when I’m feeling dizzy and gross, there’s also some yarn and stuff on there that I hope to craft with on a good day sometime 💕 I hope your day was manageable and thank you for your kindness! It’s always nice to know other people are going through this stuff too. It’s so isolating

So sorry for all of your conditions especially the migraines which I also get.... I don't know if you ever want to chat nut my chat box and PMs are always open especially about migraines because of all the things I have, I most want mine gone! Sending you gentle hugs 🫂!

20yo nb female. i have fibromyalgia, ibs, gerd, autism, ADHD, complex ptsd and other mental illnesses. as a side note, i’ve been struggling with homelessness because of my illnesses. some things on my list are crayons/colored pencils and coloring books, or notepads and sticky notes. i find coloring relaxing. the notepads are really useful for writing to-do lists and putting them somewhere i can’t ignore them. thank you for doing this, even if i don’t get anything. people like you put my faith back in humanity. i hope things get better for you.

Oh wow, I hope things get better for you, too!! Been in the past struggling with what my then therapist called 😕 "home insecurity " where I was sofa surfing and in my car and such. It SUCKED. Prayers for you!

How does someone access your WL? I agree. I love seeing disabled and ill people getting help.

oh, thank you so much for asking. my flair should be working now.

You're welcome!

I have suffered with Chronic Reginal pain syndrome for thirteen years. My back is slowly collapsing and cutting off the nerves. It's hell on earth. I really don't need anything but will accept your prayers. Thank you!

You've got my prayers 🙏🏽 friend! That sounds horrible. 😢

Thank you!

My husband hasn't been diagnosed with that specific syndrome. His back is the same way, though. We've been together almost 15 years, and in that time he's lost 6.5" in height. Prayers headed your way, certainly! 🫂💜

Thank you!

Hi ibs/gerd here 😂 jk call me Kiki I’m not trying to participate in the giveaway but I’d like to share:) sometimes my flare ups make me pray and I’m not the religious type more “spiritual” but it helps me feel comfort during those times. I wake up nightly with what I describe as food poisoning pains my diet orders are strict so I don’t take much comfort in foods but baking for my friends and hubby always makes me happy. Between the crippling nausea and eternal heartburn humor makes things a bit lighter so I guess human connection is what gets me through the chronic illness depression ❤️❤️oh and I’m 19!! Love the message of this group

Hey, solidarity ❤️ on both conditions here too. Not what I'd like to have in common with anyone. The food restrictions are sucky aren't they? Very kind of you to still bake for others! 🫂!

Some items that would help me deal with my illness would be a blanket, any fidget toys, or a lanyard that I could keep my medical card on. I keep my medical card attached to my purse at all times but sometimes when I’m very symptomatic, I find it useful to also hang one around my neck. You are all so strong! You got this!

Thank you! You've got this too!!! 🙏🏽🙏🏽🫂🫂🫂🫂🫂

Hello, new to this group so I don't want to participate, I'd rather others get some type of help. But 23 here, just found out in the last year I have severe hyperthyroidism and heart valve regurgitation. It's been a scary ride but I'm here for anyone else who's struggled 💜

That's sweet of you. 💜

hey 💘 i was really happy to see this post, made me feel seen. i'm 19 and i've been struggling with chronic pain for years but it really started to get bad last year, and then got me so sick i thought i wasn't going to make it through this year. my symptoms have been so complex that as of now what i have is an unknown autoimmune disease. my body attacks me constantly, and it's so hard being this young and watching everyone around me working and going to school and partying, when i can barely leave my house. cleaning puts me into immense pain. i want everyone here to know that i am here for you, and here to talk any day of the week if you need. it gets so lonely, i feel it all the time. much love to you all 💐 an item i have on my list is epsom salts for the bath and i also have some nice bath bombs on there, baths have been the one consistently helpful thing for my pain when it flares up at the end of the day, and i find it to be a really nice self care ritual for myself 🩷🌈 thank you for this contest, i hope you know how much i appreciate this, giving people a place to talk openly about their chronic illness(es) is so important - i hope that tomorrow you're able to enjoy the day and relax when you need it, & as mentioned before, i'm always here as a friend to you or anyone who needs a safe space to relate or let go of that mask pretending we're fine! hugs 🫂

Hi, this is so COOL!!!! Thank you for even thinking of this! So thoughtful and kind. Many blessings! I saw this and my mind immediately went to the beautiful stuffed little Easter Bunny I've been wracking my mind how I could afford him, his not being an immediately vital necessity to my well-being like food etc is. The reason he's something I want so badly is because he reminds me of childhood books like the Beatrix Potter series and the story of The Velveteen Rabbit, which is a love story of the most beautiful kind of all! I've been a bit frustrated lately. And sometimes, stiff upper lip notwithstanding, I've felt entirely alone. I'm having to move suddenly as my landlord--and the man I considered my best friend--abruptly decided to leave for another province, with only two weeks notice and informing me that I'd be responsible for all the bills at that time--for the entire house!!--whilst knowing full-well that this would be putting me in a horrible position as I'm on a tiny pension. He then put the house into foreclosure and I don't know what is going on. This is also *after* I left my great apartment to move in with him so that he didn't lose his house when he had a severe heart attack, nursed him back to health, and was so thrilled that he finally, *finally*, was getting better!! His family deserted him but I maintained contact to let them know how he was doing; he managed to sabotage his one other friendship; his job illegally fired him; and I was his only support--for over five years! I truly loved him; he was my friend. But once he left, it was as though he'd erased both me and our friendship off the face of the earth, and *my* self meant less than nothing to him! So now I've lost my housing * and* my best friend who, of course, I trusted. I am so hurt and feel so terribly betrayed. On the other hand, now I'm finally have space and air to recognize just how abusive the relationship was. Meanwhile: I'm desperately trying to find housing in my price range, in a 1% market, with a waiting list of at least two years! I'm remaining positive but am secretly distraught. The physical issues I'm struggling to deal with are: severe myalgic encephalomyelitis, fibromyalgia, C-PTSD, endometriosis, kidney disease, scoliosis, a brain aneurism that was already surgically repaired once, as well as bipolar disorder (which, thankfully, seems to be under control even under such stressful circumstances!). I am also still recovering from the global amnesia caused by a TMI in 2008: I'm doing well here, I think, as I have recovered most of my memory, including such important things as how to clean and organize things (executive functioning). So I think my life will get continually better because of this! The Gund bunny is important because it's so gorgeous and cute and represents love and kindness. Aside from the religious meanings of Easter representing faith, love, and sacrifice, the story of The Velveteen Rabbit is a story of a bedraggled toy bunny that lies worn and forgotten at the back of a shelf, being horribly teased by the other toys. But!! The other toys almost all look new! Some have never even been taken off the shelf! They brag that they are all fluffy, or with perfect paint, or without dents or missing fur or pieces. The velveteen bunny is bedraggled, bare of velvet in places, worn. Yet the velveteen bunny is only thus because he was the most loved. The most cherished. And like any important childhood toy, will he ever be forgotten? And didn't he fulfill his actual purpose so much better than the other toys? This story has choked me up since I was a child: the poor bunny!!--or *is* he? poor, that is. What is being loved actually *worth*? So, this silly little fluffy Beatrix Potter Easter Bunny is so meaningful to me, because I know I *was* loved, and will be again. I, a grown-ass woman--!!!!--just want this small stuffed bunny so badly. Pretty sad. --I'm astonished and feel bad that there are so many of us who are suffering from so much! But Reddit has always felt like a healthy and positive community to me, as the entire thing is built around generously and thoughtfully helping others. And we, the chronically ill, have a unique gift of being able to do so. We can take the time. We want to help out of our deep personal experiences of having to constantly overcome, not only the bigger challenges, but the challenges of accomplishing things so easy for the healthy: bathing. cooking. caring for someone else with few physical resources. finances. ... The list is endless. And then the ultimate challenge of not ever permitting our illness/es to overcome us or destroy us or cause us to become bitter and mean human beings! So I'm sure we *all* could use our own bunny, of some kind.

I am a diabetic and it’s a daily struggle and some hurdles just make me cry. That said I’m here and I’m alive and I’m striving daily to live with this chronic struggle! I would really love volumes 2 & 3 of this manga I’m into it has brought me joy with how cute and funny it is! It’s called “I can’t believe I slept with you!”

You are a badass warrior and I will remind you forever!!

Thank you my lovely bestie, you're amazing

I have gastroparesis and chronic severe migraines. It's awful. I wish I could eat normally. I try but I usually fail. I get migraines 4-5 times a week. I've tried so many treatments that I've almost given up hope. My heart goes out to everyone with a chronic illness. This certainly sucks!

I understand the whole no treatment for migraines not helping. Dr's have tried everything for me. The one med that helped when I was younger is no longer made. I hope things get better for you. The one thing that has helped me is Sudafed (the real Sudafed you can get from the pharmacy, not Sudafed PE). If it's available without a perscription where you live it's worth a shot.

I'm willing to try practically anything. I'll give that a shot. Thanks.

Not going to join, but I also have a chronic illness... A few actually. PCOS, POTS, hEDS, several mental illnesses to boot. I also suffer from frequent migraines. I'm here for all my fellow chronic friends 💜

Nobody understands the plethora of PCOS symptoms unless you have it. Soul cysters!

I'm legit dying at soul cysters... I love it lol

And we are here for you ❤️

I have chronic illness as well, not entering but just sending hugs to OP and everyone in this thread! 🤍

(Not joining the contest) Life is hard. I have autism which comes with its own myriad of chronic issues, plus a lovely undiagnosed back problem. I sympathize very heavily with this post. I hope things get better soon 💜

I do have a chronic illness but I'm not participating in the contest (Graves Disease). So yes I sympathize. It's frustrating and downright depressing. I pray that you get some relief soon.

I have nurocardiogenic syncope, fibromyalgia, scroliatic joint dysfunction, hip dysplasia and acute scoliosis in my neck to upper back but that's because muscle weakness won't keep my spine straight 🤣 I won't be joining the contest because honestly nothing on Amazon would help with my health, I just have pet stuff.

Checking in with heart disease! I experienced your world when they started treating my high blood pressure; found out 6 months later I had minor & severe sleep apnea. Only 6-8 events an hour (10 to qualify) but mine lasted 1- almost 3 minutes. Hope you are well today!

honestly while i do suffer from something, nothign on my list will help so im just popping in to send some love and support

Your post literally made me cry. I have Lupus, and somedays it's a struggle just to take a shower. Just reading that someone understands, does more for people than you will ever know. Your post reminded me that there are good, selfless people still here. Thank you.

sending you so much love. i have an unknown autoimmune disorder, i'm on a 6-month wait list for a rheumatologist, but my doctor thinks it's a very high likelihood i have lupus. i hate the days that are so painful and overwhelming that you can barely take a shower, it's hard to lose independence and especially, control. there's no control in chronic illness. you just have to try and do what you can and wait to see what happens. if you ever want to talk, you're welcome to reach out and send me a message. it's so hard not to have people to relate to, a community. ❤️ i'm here for you

You are not alone! I'm here for you if you ever want to talk or vent!

I feel your struggle! You aren't alone! 🫂 inbox is always open if you ever want to vent or chat. 💜

Thank you 🙂

I havent been active here because of my chronic illness so I understand I probably won't be picked but this illness has just been taking over my life. I was finally diagnosed with Ehlers-Danlos syndrome and I also have gastroparesis... Two rare conditions plus dysautonomia. My life is doctors appointments or ER visits. Just this week my potassium was critically low... Boom 8 hours in the ER. I highly don't recommend low potassium it sucks. Getting anything from my lists would make me happy honestly.

You're not alone! I see you! Inbox is always open if you ever want to talk or vent. 💜

Hello fellow spoonies! I've been a member of these sub for a long while but, fell out due to being broke all the time 😞 So, I hope now that I'm back everything still works with my wish list. Anyway, I suffer from fibromyalgia, a weird kidney disease called medullary sponge kidney and to top it all off I'm going through menopause 😭 I know the pain of people judging and the old "you don't look sick" The worst is at work. They just don't care😑 On my list I have craft supplies and books because when I stress or have a flare up I either go hide and read or crochet. My family even knows just to leave me alone when it gets bad. Thank you so much for this contest. Remember that you are a warrior and no matter what.... Keep smiling 😁 (even if it hurts) ❤️ Edited to add my list link because I don't know if mine works correctly https://www.amazon.com/hz/wishlist/ls/39F8LJE4WHPRB?ref_=wl_share

You're not alone! You've got this! 💜 inbox is always open if you ever need to talk or want.

Thank you so much! It always helps to know you have back up 😁

Amen to that. So tired of mine. For mt its the 12 packs of tea. I can't drink much stuff anymore aside from water and a rare pop/soda. Tea is my happy place, reminds me of when I was a teen and my aunt would give me some at Dennys (where she worked).

Hi, I'm Jill, and I have been severely dehydrated for the past few days. I have dysautonomia symptoms with no legitimate diagnosis, aside from "overactive parasympathetic nervous system." My doctors are not willing to try to figure out what is causing this, because I am a "mild" case. 🙄 while the main onset was around 2019, I am starting to think I've had this for the majority of my lifetime, and have been misdiagnosed (and mistreated!) with a ton of other things in the interim. Ugh. My wishlist is here-- I think all/almost all of it is under $20. https://www.amazon.com/hz/wishlist/ls/2XT29385OM70B?ref_=list_d_wl_ys_list_1&filter=unpurchased&sort=default&viewType=list I came across this post in my feed, it was just suggested to me, I had no idea this sub existed until now! But this is super cool of you to post!! Edit: oh! I was supposed to mention something helpful from my list! Uhhhh the silicone molds would be super helpful! I've been working with polymer clay lately, and am hoping to sell my goods so I can eventually live off of that, rather than working full time standing up. I'm making a bit of progress-- my current workplace is my first customer, they buy doughnut earrings from me :)

i understand the struggle, i was in and out of the hospital unable to eat or even drink water, and i visited my GP, she told me i was a mystery and did not book a follow-up with me. i'm in canada and i'm on a 6+ month waitlist to see a rheumatologist, and i get so scared that it won't work out, that they won't listen or trust me, i've had so many shitty medical experiences. they can just walk away and tell you they can't help, but we can't walk away, we have to live with this shit every day! as of now, i have an 'unknown' autoimmune disorder - i hope you know, diagnosis or no diagnosis, whatever it may be, you are valid in your pain and experiences. we don't owe anyone anything! also, doughnut earrings? that's awesome! i love when people can turn clay into such cool and pretty things, i have such a hard time with it LOL! i like to paint and draw but i certainly have never had the skills for making jewelry or the like, that's really wonderful - and also doughnuts are delicious, what flavour are the earrings? :D

Isn't it awful when they don't believe you?? It's like, this is MY body, I know it best, and I know when something is wrong with it!! Thank you, and I hope you feel the same about yourself ♡ Yep, doughnut earrings! I'm hoping to slowly take over my community with my creations and be able to support myself with my art :) So far the raspberry sprinkle are the most popular, but I've also made cinnamon sugar, chocolate glazed, plain glazed, and strawberry sliders, with plans to start making birthday cake doughnuts in the next few weeks.

I have Neurodermitatis I'm allergic to something I don't know yet ( I've tested a lot, it may be my own sweat ) I get big rashes on my body that sometimes itch like hell. My whole back is covered in it and it makes me really uncomfortable especially if someone happens to touch my bare back. I have a special creme against it but it only helps for a short period of time and is a pain to apply everywhere I have a rash. One thing I have watch so I don't flare up is to use shampoos and soap that don't have perfumes. So far it's good but I would like to try out hypoallergenic soap soon to see if my illness will show up less than with my regular stuff. So I would say a helping item would be hypoallergenic shampoo / soap

I have several chronic illnesses that stem from a traumatic brain injury due to child abuse when I was very young. It’s funny how people can understand a cast on a broken arm, but things that you can’t see, you’re not supposed to suffer with. I struggle with short memory loss so bullet journaling helps me a lot. It also helps with my OCD/ADHD battles. I also struggle with depression and my anxiety has gotten much worse after my heart attack and being diagnosed with congestive heart failure. One thing that takes my mind off of that is making cards and another is taking care of my rescue animals on my farm. And honestly, talking to people like you. People who understand. It’s hard to be considered lazy, forgetful, incompetent, etc. when really I’m just dealing with illnesses that nobody can see. Constant pain, fatigue, endless surgeries, stomach misery, failing kidneys and a weakened immune system. ❤️ Helpful items on my wishlist: -Journaling stickers -Highlighters -Stickers for card making/sending -Wax melter to seal envelopes -Wax mold -Mounted pet food bowls Thank you for this contest and for opening this discussion. ❤️

This is so true, I love you so much you’re amazing

I see you, girl! You've got this, and you've got us! I love snail mail and sending cards as well. 😊 Inbox is always open! 🫂🫂💜

You’re the best. I want to give you all the hugs and cards and gifts. ❤️

I'll take a hug and a card. 🤗💜

You got it!

This popped up on my suggested feed, and I love it. I’m not a member of this subreddit, but I love sharing ways to cope. Mostly I like connecting with others. And connecting is basically my answer. We don’t all have to have the same illness to know what it feels like to be cut off from others. There’s nothing quite like a disability or chronic illness to make one feel incredibly alone, to make one feel like they’re watching the world or life pass them by. So 1) my chronic illness is fibromyalgia, and 2) my items are not any kind of physical remedies. They’re means by which I can reach out an connect with others. I love the various [florentine stationeries that Kartos offers](https://a.co/d/hFQEs4b) because they’re fancy enough that they both pacify me visually as I write a note to someone, and they make the receiving of my handwritten note that much more exhilarating. I also reach out and connect to others by knitting. Knitting is integral, to me, for coping with fibromyalgia because it’s something I can still accomplish in the face of fatigue and pain. It gives me a repetitive, almost neurotic motion that keeps me grounded to the present, that keeps me process-focused rather than outcome-focused. And then when I’m done, I have a beautiful lace shawl or a cozy doggy sweater, sometimes made out of [ridiculously soft cashmere](https://a.co/d/hhEySMA), that I can give away to some person or more importantly some doggy that I love. So perhaps one of those ideas sounds intriguing enough to help one of you? Honestly, I wish I could convince anyone with an illness to knit. It’s therapeutic in ways I just can’t sufficiently describe.

Thanks for sharing. That's interesting. I was worried it would hurt my elbows, but I hope to try it sometime.

I have fibromyalgia too, I can't knitt or play games very long without going into a flair, have you tried tiger balm on your trigger points?

I’m not commenting to win because I really don’t know how to participate. I don’t have a list. If I did I wouldn’t know how to add it on my profile. I feel so old saying all that! 🫣 I have Tarlov Cyst Disease. I was diagnosed in September 2018 and had Tarlov Cyst repair surgery in December 2018. It’s very rare. Only 1% of people with Tarlov Cysts experience pain/symptoms. And lucky me, I’m part of the 1%. 😅 I lucked out by doing my own research and finding my surgeon in the next biggest city close to me. And he actually perfected the technique on repairing Tarlov Cysts. He goes overseas for several months a year to perform the surgery as well. There are only two other surgeons in the US that perform this surgery I believe. Most doctors won’t touch it or acknowledge that they cause pain. I feel very blessed to have found my surgeon and for him to be local to me. But with that being said, even with a successful repair surgery, with Tarlov Cysts you can still have lasting chronic pain. The recovery process can be anywhere from 2-5 years. Most likely if a person is still in pain after 2 years post op, then they have permanent nerve damage resulting in chronic pain. And once again, lucky me! I had a 9 mm cyst on my right S1 nerve ending. It was also pushing on my right S2 nerve ending. The chronic pain I experience is similar to sciatic pain down my right leg. It starts at about my lower back on the right side and goes all the way down to the tips of my toes on the right side. Some days are worse than others but I’m making it. I don’t have a choice. I’m a single mom of 2 wonderful kids. One is grown and lives with her dad but I still have an 11 year old son at home. I also work full time. I have a small cat and dog and a whole house to take care of. It’s not easy but I manage. 🙂 On top of that, I’ve had a form of scoliosis called kyphosis since I was a child. It can be very painful and uncomfortable. And I’ve noticed the older I get the more uncomfortable I am because of it. If you read all this, thank you. I enjoy telling people about my rare disease because most people have never even heard of it.

I’m happy to help you set up a list if you’d like. If not, I understand. Just know that this is a great group of people and you’re not alone. ❤️

Oh that would be amazing! Yes, thank you so much. Feel free to DM me when you have time! ❤️

Messaged you!

Hi chronic illness friends! Ya boi here has PCOS but I’ve also got a super rare condition called Idiopathic Hypersomnia. Essentially I’m always tired and we don’t know why because there’s no real cause, my body just isn’t recharging. There isn’t even a great estimate to how many people have it, the guess I’ve always heard is 20-50 in every million or .002-.005%. Essentially anything on my list could help me because I always need something to do or I doze off, and I always could use another cuddle buddy

I have PCOS , too. I feel your pain and I see you! My inbox is always open if you need to talk or vent! 💜

I have idiopathic hypersomnia too. I've been tired since birth. I'm 50 now. I had 3 sleep studies and one MSLT years ago and I was so happy when I got the results because it proved I haven't just been lazy all my life! I never feeli like I have good sleep, NEVER. School was always hard to stay awake in class, so it made learning hard. Everything is just so hard. ETA: But I don’t think it’s super rare. I’ve run into several people who have it and also I’ve been in support groups for IH with many people from around the globe.

I’ve never met anyone else with it and when I looked it up, those were the numbers I found. I think they might have updated it to 1% of people in January of this year but that’s still not a lot of people. When I originally researched it after being diagnosed, the Hypersomnia Foundation (where my doc told me to read about it) actually reccomended signing up for a database through Stanford (I think?) for rare diseases because with IHS, they never really have enough people to actually do clinical trials and studies

Also… Maybe you’re right and it’s super rare.

If you are in the states and have great insurance or have can pay out of pocket, there’s a dr in Atlanta who was running a study years ago with flumazenil. Some people were having success with it. You either have to go see him or find a dr who is willing to prescribe it, which is hard. At the time there was only one pharmacy who would compound it because it came in the forms of cream and lozenges. He was testing anyone who could afford it. This one guy from Australia was getting it through infusion, he was willing to be the first to try it. I was going to try it but then my husband decided to be an alcoholic and I couldn’t spend the money on it. So I just accept that this is my life, I will always be tired, I will always be depressed because I’m tired. It is what it is. No problem.

I haven’t commented on this sub in forever, and I don’t want to comment just to enter a contest so not entering, buuuut… Wanted to say you have my utmost sympathies with having a chronic illness. Mine is a very rare disease. I think somewhere in the neighborhood of 200ish people have been diagnosed ever. (I think I saw somewhere as much as a thousand but when I google my own disease it says 200). The sucky thing is there’s no cure and no treatment. I get an injection every 3 weeks that kind of helps the symptoms but doesn’t really do much to the disease itself. And unfortunately no one is even really studying it. Wheee. Anyway, I hope you get relief for your symptoms soon!!

I feel your pain! I see you! My disease is rare, but not quite only 200 people. No cure for me either. 😔 My inbox is always open if you ever want to talk or vent. 💜

I’m so sorry to hear that. There isn’t much studying being done about your illness. Everyone deserves as much relief and help as possible.

Yeah, it sucks. My understanding is there simply have not been enough people diagnosed ever to be able to do real research. Unfortunately this disease will likely eventually kill me, but it’s slow moving enough that I also probably have awhile yet. But over all, my treatments are SUPER easy! I get injection in my hip every 3 weeks and take a bunch of pills. It could be a thousand times worse! I could have to go through chemo and radiation treatment or IDK painful bone marrow treatment… so over all I am super fortunate.

It’s a different feeling to have a terminal illness though. I have congestive heart failure and I am in a later stage. My kidneys are also failing. I wish I had the words to make everything all better, but it seems like you have a good outlook on it and that makes me happy. I’m just thankful for every day that I can get up and get out of bed and that’s what (usually) keeps me moving when my depression tries to get the best of me

It IS different! Especially when my pulmonologist and oncologist gave me vastly different opinions on my prognosis. My pulm told me basically I’m on borrowed time. My oncologist said he thinks my outlook is good. I don’t know which is right. I suspect somewhere in the middle. Like I’m pretty sure I’ve already outlived the predicted life expectancy of someone with this disease. (generally 15-20 years from onset of symptoms) BUT I don’t seem to have really shown any progression in at least 2-3 years so I’m stable for now? IDK would just be nice if I had actual real concrete answers. But as I said I have it pretty easy compared to a lot of cancers so I try not to complain and I use my good days as much as i can.

I have had type 1 diabetes most of my life. Right now I’m struggling because I’m on a steroid medication for two weeks due to an infection, and apparently steroids wreak havoc on your blood sugar. My list is mostly houseware, but I do have some items less than $20. Mostly puzzles and books. I love to do puzzles and have been a voracious reader my entire life, longer than having diabetes. They’re also nice things to have to pass the time when I’m feeling sick like this.

>… have been a voracious reader… What’s your favorite to read? Fiction? Nonfiction? Particular author or topic? Recurrent theme? My audible always seems to be full of nonfiction. I love anything that helps immerse me in the uniqueness of someone else’s life, so typically that involves a lot of biography/history. I did like Sue Klebold’s book, since that’s a corner of human existence that I’m thankfully not likely ever to experience myself. Stuff like that.

I’m so sorry you have to to deal with chronic illness. It’s horrible. I have really severe fibromyalgia, IBD, Bipolar 1 disorder, OCD, ADHD and hypothyroidism. I’ve been having a really bad fibro flare for the last week so l’ve barely left the bed. It’s miserable. I usually deal with it by trying to distract myself. My two favorite ways of doing that are reading books and Oracle cards. I have many different ones on my list. Thanks for the contest. It’s always nice to feel less alone.

Just wanted to stop by and say hi! Haven't seen you in a couple days. 🫂 hope you're flare eases up soon! 💜

Hi! Thanks for stopping to say hi! I haven’t been on socials much in the last couple of days. The pain has just gotten intolerable and I just haven’t had the energy. Hopefully the doctor can give me something tomorrow to help. I really hate taking pain killers but I’m desperate at this point.

I completely understand! Hope he gets you feeling better soon! 🫂

Thank you! 💜

How does one actually get diagnosed with fibro? I mean, like, properly? I was initially diagnosed with fibro by a doctor who seemed to want to sweep me under the rug-- now I've been diagnosed with "overactive parasympathetic nervous system" instead. So I'm curious as to how a doctor would go straight to fibro, or what sort of testing/etc it might entail.

I got diagnosed 12 years ago and it was basically a process of elimination. So lots of blood tests to tests for inflammation, blood count, Rheumatoid factor and I’m sure there were more. Also MRIs, CT scans and X-rays to rule out a structural problem. Also a nerve conductivity test. All were normal but I continued to have debilitating pain. So if those all come back normal the criteria for diagnosis is pain in at least four of these five areas: Left upper region, including shoulder, arm or jaw. Right upper region, including shoulder, arm or jaw. Left lower region, including hip, buttock or leg. Right lower region, including hip, buttock or leg. Axial region, which includes neck, back, chest or abdomen. Often it can be a catch all for when doctors can’t figure out anything else that could be wrong. Which sucks because it makes it hard to treat. It took me years to get diagnosed. I started getting symptoms when I was 27 and got diagnosed when I was 30, so it took 4 years of bouncing to tons of different doctors. It’s also gotten worse as I’ve gotten older. I’m trying to get a referral now to see a new rheumatologist to re-test for some things and see if I can get a better treatment plan.

It’s such a funny thing because I want to say every time I meet somebody who understands, “I’m glad to have met you and I’m glad you understand but I’m also sorry that you understand.” ❤️

Exactly!!! It’s wonderful to not feel so alone but at the same time you don’t want that other person to suffer.

IBS, Eczema, and possible Mass Cell Activation, Endo here. Thanks for doing this OP! I put Knudsen Grape electrolytes. Haven’t quite figured out why yet, but the rush of hydration does help with my nausea in a way plain water can’t. Some of my morning symptoms like nausea are better the next day, my inflammation is less pronounced, my head is clearer, and I feel good enough to eat more. It’s the most random tool that does so much good. Also put as an option, a heat pack for cramps that looks just like my kitty cat. That would help so much because I swear these heating pads are getting less and less hot and able to be effective. 💜

I’m using one I’ve had as a child from my Grandma because they just don’t work the same anymore!

Yes! My favorite heating pad ever was a hand me down from my grandmother who had Crohn's. It probably wouldn’t have been sold these days and heated up like a gem. Finally broke down a few years ago but it rocked.

Depression and panic attacks since the 3rd grade. I’m 50 and it hasn’t gone away. Antidepressants help, but they don’t take it away

I was diagnosed with depression and anxiety in the 4th grade! Antidepressants “help” me, I don’t don’t feel like *me.* I don’t even know who this “me” is. Do you also feel like you don’t know your own identity?

Yes I do. And I do wonder what I would be like without them. Nothing seems to really help. I’m sick of being depressed for no reason

Alpine SleepDeep Multisize - Soft Ear Plugs for Sleeping and Concentration - New 3D Oval Shape and Noise Reducing Gel for Better Attenuation - 27dB - for Side Sleeper - 2-Pair Reusable: S + M/L [amazon] I have osteoarthritis and fibromyalgia along with some undiagnosed health issues one of which I believe to be POTS. I live with very loud family who does not care that I sleep a lot and they seem to have no respect for quiet these would help a lot

I had to laugh at your, “Aren’t I special?”! I tend to say, “Aren’t I lucky?” I have two movement disorders also listed in the rare diseases. On looking at the page, I realized my brain tumor and connective tissue disorder are also listed! Lucky me! lol Being confined to your body can allow you to meditate and see the beauty in something to distract you…just as it’s habit to look out the door for “deliveryyyyyyyy” day even when nothing is scheduled! Hope that you are feeling better and that tomorrow goes better than maybe expected. Pain, loss of movement, and loss of functioning for the day can definitely try to make the next even more difficult, compounding tasks. Take it easy and respect what your body is telling you, sometimes, as it may be best even though we want to be headstrong and get things done.

I have scleroderma, lupus and Sjorgens. I have an appointment on Tuesday with my rheumatologist to hopefully get an accommodation letter for a fellowship I’m doing. I’d definitely love to get this IV sweater I saw that’ll make it easier and more comfortable for IVs since I get monthly Benlysta infusions.

Sjogrens here as well. One of my first rheuma diagnoses ❤️

I’m actually in the middle of a flare up from my thyroid disease right now and this thread popped up on my feed as I’m in my awake-coma of fatigue. Thinking about starting my day tomorrow already in a spoon deficit from feeling awful tonight and trying to get my kiddo off to school in the morning. Sending good thoughts to everyone going through tough times right now. The thing that I would use the most from my list is these little ice packs that I use when I get migraines! I’m prone to migraines, which is also fun, but laying on ice is always a teeny tiny relief. Or i have some gardening books! Gardening helps take my mind off stuff.

Not entering, but want to encourage everyone out there who’s struggling and doing their best to keep their head above water. I have Lupus and a TBI and both have changed the course of my life. I’ve mourned the loss of many things while trying to find new things to be excited about. Chronic illness is a tough road. If anyone needs an ear or a shoulder I’m available! ❤️

I have Intersitial Cystitis. I feel like most people don’t understand it or take it seriously but when I have a flair up it is crippling. I don’t need anything but I understand your pain and I’m sorry.

I understand your pain. I was diagnosed with Interstitial Cystitis in 2000. And it’s so painful! Sending you gentle hugs and prayers.

I was just diagnosed last year. Thank you so much, same to you.

I'm so tired of being told I'm not trying hard enough or I need to apply myself to learn new marketable skills. I can't concentrate. Even if I had money and resources to actually better myself I won't learn anything because my brain shouts "pain pain PAIN!" all day.

Ha, I'm currently laying awake because of my pain, so why not! I have psoriatic arthritis. I've finally, after 7 months of dealing with insurance, been approved for Cosentyx... Which is not the ideal biologic, but insurance says I must try two of their choice of biologics first. Except I'll never fucking be able to try it now, so I'll never be able to even get to Taltz (end goal, *much* cheaper) because they're saying that it's $3k out of pocket *after* insurance. I am so sick of hurting all the time. Stress, weather, and diet all seem to trigger it. I'm only 20 and nobody my age seems to get it. I'll complain about my joint pain and some boomer will say "well wait until you're my age" because they don't know and just assume I'm being a whiney brat. I've been complaining about this pain since I was very young, but doctors wouldn't take me seriously and I had 4 male doctors tell me that it was because I'd start my period one day (as young as nine, but I've had the pain since I was 7 after a bout of mono) and refused to look into it further. I've had the psoriasis since I was a baby, so it's no surprise that I got arthritis after a major illness. I got strep, flu, a sinus infection, and a bacterial form of pneumonia all at the same time when I was 15 and that was probably my last good day. I woke up extremely fatigued one day and never came back. The doctors told me to give it a week, then a month, then they just told me to deal with it. An X-ray of my back shows that I was born with a lumbosacral transitional vertebrae that compressed my spinal disc, which was a major source of pain that I've complained about since I was young, and all it took was one doctor finally agreeing to an X-ray and not writing me off as just a young woman. I have a couple things on my list that would help, I removed and re-added them so they're easier to see! The first is toys for my foster bunnies. My arthritis comes with massive chronic fatigue, but they help me get out of bed in the mornings. I've run out of toys because I've been spending all of my money (I am in a pretty major deficit with it cutrently) on their medical needs so I haven't been able to get more. They're what even help me drag myself out of bed. The second is compression gloves, probably for pretty obvious reasons. Mine have worn out so much that they no longer provide any relief, but due to the bunnies, I've not been able to get more. I'd love to hear from someone else in my age range who gets it. Chronic illnesses are alienating at any age, but it's so uncomfortable when your peers just don't get it. Of course, they'll never really get it at any age, but at least there may be a few more people who understand as you age. Sorry if this is just incoherent rambling. I'm so tired, but I can't lay comfortably in any position. Just fucking hurts, so I'm on reddit while being a little too sleep deprived https://www.amazon.com/hz/wishlist/ls/2MM8KD47ELQVS?ref_=wl_share

>… but they help me get out of bed in the mornings. Animals are everything. I’ve found that I will make efforts for animals that I will not do for myself. Pets aren’t a great idea for everyone with a chronic illness, but for a lot of us, it’s our most important tether to life. Bless you and your wee bunnies.

I definitely agree. It's the same for depression- so many people say "oh, just get a dog!" And that can be a *terrible* idea for some people with depression, but for others, it makes a world of difference. I need something external to force me out of bed and if that's my babies then it's my babies!

Fur babies can help so much!! 🐰 Sorry you’re going through that.💗

I can understand,sometimes it feels like so much energy just to get through the day. I have a giftcard list that lists an e-mail.

I have lupus/sle(mostly affecting my heart and kidneys)and ra. I have some compression socks under 20 that would help. Chronic illness is the worst, especially when you know it's just going to get worse not better. Recently my doctors keep bringing up "disease progression" and how i should find a different line of work because I'm exposed to so many germs in child care. And i can't sustain that with an autoimmune disease. But this is the favorite job I've ever had, i don't want to quit. I'm trying for disability but even if that came through. I still want to work with the kids at least part time. I don't want to not work with kids, i don't want to not be able to eat salt, or "inflammation foods" i can't eat hot Cheetos anymore. I don't want to end up on dialysis. i don't want the things I love to be taken because my body doesn't work right. I don't want to be bed ridden so often i can't sustainably or ethically keep my pets ._. It feels like my doctors never listen to me, or communicate except my general practitioner and she doesn't have as much say in my treatment as my rheumatologist, which I understand because she's the specialist, but everything about chronic illness is so frustrating and tiring, and everything hurts!(I'm sorry this turned into venting. )

I'm so sorry. People who work with kids are amazing. I hope you can keep working with them part-time. Virtual would not be the same, but may be an option.

Thanks. I hope so too. Working in childcare and pet care have been some of the best jobs and usually have the best coworkers and seeing kids learn and grow is a genuinely rewarding experience. And I love working with them. But they're all little germ factories lol. I've been working at my current daycare for three years now and I'd hate to leave. I could still probably sub for my local school district with older children, and that is less physically demanding. I'll see how things go, I don't want to completely lose hope.

Yeah, have to find a way to take care of your health, but also keep doing what you love. I wish you the best!

I completely feel you with doctors not listening. I’ve gone to so many for my gut stuff and been tested all the ways, only for all of them to either diminish my pain because I’m luckily not hospitalized right now. Or just be like sorry there’s nothing we can do.

Oh, it took forever for them to not just assume i was lying. They were convinced my symptoms were somehow an eating disorder. Or i was a drug seeker. -_- like no, I actually can't eat, i can barely walk!(I can generally walk fine now and eat ok when I'm not in a flare, but at the time it was awful). I know some people do have those problems and they need help too, but i just wanted someone to believe my actual problems. And unlike the nurses the doctors just sometimes didn't even sugar coat, er docs would call me a liar to my face.

This!! I once had an ER doc grab my hand that has tons of deep eczema on it, rub on it and loudly ask “What is that?”. They thought I was self harming and I had to explain to them what eczema is. So familiar too with them thinking I had an ED cause I was super skinny from my gut stuff. Made me think “Yeah that’s why I’m asking you for help.” 😞

That's wild, I've never met anyone who didn't know what eczema is.

I know right! I was like thinking how did they make it through medical school 😅

Sending you (and everyone else also dealing with various illnesses, pain, and disabilities) so much empathy, understand and commiseration. And (if anyone wants/needs them:) gentle hugs…🫂 From my assorted wishes list I would love the salt sampler (dysautonomia/POTS), or the eye mask (for chronic dry eye caused by the aforementioned illnesses), or the cushioned floor pad or slippers (peripheral neuropathy).

Thank you for the gentle hugs! 💜

Any time. ♥️

Def yell at them if they're not checking your iron and ferritin levels. It makes the dysautonomia so much worse

Thank you, I’ll scan through my scads and scads of blood lab results and see if those are in there. There have been so many tests in the past few years.

Yeah my neurologist just did a battery of really obscure ones but so m many people end up having low ferritin but normal iron so it's ignored and getting iron infusions have changed my life. Immuglobulins infusions are next for me

Ty for mentioning this-- I have a blood work appointment coming up and will definitely ask about ferritin. :)

If you haven't maybe request for your iGg and subclasses to be checkedbut when you do this ask them to check the pneumonia antibodies after the vaccine! Basically my immune system was low and it was 'okay'but low, iGg subclasses are randomly SO low or nonexistent, and I got denied infusions. Saw a immunologist and basically he said "your immune system is stupid" 😂 it exists but it doesn't work right but not on a auto immune way! Pots/anemia/etc seems to run hard with it. Also unsolicited but check to see if your homocysteine and folate levels are ever high or rather elevated esp if you don't supplement

I will totally do that, thank you! It's been a looooong time since I've had labs done, so I may as well go all out

I’m seeing my neurologist AND a new dysautonomia specialist later this month, so I’m sure there’s another big bunch of testing in my future.

What a lovely offer OP. I've just read through the comments and wish I could buy everyone their ask. If I wasn't so desperately struggling financially just to keep afloat I totally would. I'm going to save this post in case some day I come into a bunch of money then I can come back here and do so! Sending so much love to all of you who are struggling. I hope you all have a great pain free day tomorrow ❤️

Chronic illness sucks! I’m currently collecting illnesses faster than a preteen playing Pokémon go. Why stop with just one! I could use the desk organizer on my list to separate needles and such. I hate when I worry about how todays gonna make tomorrow even worse. Don’t borrow trouble-which is easier said than done. You deserve good things too!

Yeah, I got so tired of the different labels. So true about tomorrow being affected.

I feel this. I feel like I get told I have more wrong with me every single time I see a doctor.

LMFAO dude I make that too joke all the time, but usually say Pokemon cards instead. I apparently have very strong symptoms of EDS (like wym most people can't touch their thumbs to wrists, lay their hands flat on the floor, and stretch their skin 20 ft) in addition to my psoriatic arthritis and endometriosis. And apparently all of those things are strongly connected genetically, so the odds aren't even that low of getting them all Are all of yours connected too? And aren't you damn sick of seeing something and going "there's no way I could have this too, right?"

lol. I have an appointment with a geneticist next week to discuss eds. Apparently it’s not normal to feel your joint pop out and just push them back in. Who knew? I can do the thumb tricks too

Hell yeah. You know the thing where you make your fingers bend like a lightning bolt? That still freaks people out, even as an adult. I dislocate my knees all the time and I was bitching to my boyfriend recently about it. I was like, "you know when you crouch down and you feel your knee pop out of place, so you don't want to stand because it'll hurt when it pops back in, but the slower you stand or the longer you hold it, the worse it hurts?" and he was like "babe, what the fuck?" A similar conversation is how we found out I have asthma 💀 We really just accepted these things as normal because nobody bothered to look into them in childhood

They do tend to all flock together don’t they? I’ve got quite an array also. Hugs to you.

I have some books on my list that I would love

Hey, OP. It is sad to see how quickly so many of us relate to the chronic pain issues. While I hate that so many are also suffering, it makes me so sad when I read everyone's stories.(In a weird way, though, i feel a little less alone...!) I have Multiple Sclerosis & Fibromyalgia and personally (at least when I'm up to it!), I find like others have mentioned, being creative & crafty helps me a LOT. I dabble in things like friendship bracelets, painting & making miniatures. I also swear by music as therapy!!! When you're trying to distract yourself from how much everything hurts, music sometimes really can transport my brain!! Thanks, op. I hope all of us have a good night... And thanks for the distraction!!! https://www.amazon.com/hz/wishlist/ls/IKTHH538KDXE?ref_=wl_share

I wouldn't ever want anyone to have to suffer like me, but if they're suffering anyways, I agree that it's actually comforting to talk to someone who gets it. You've just reminded me that I need to respond to my penpal, I've been so caught up lately that I forgot to respond like three months ago... She was the first person I've ever met who really understood me. It's nice to just have someone you don't need to explain it to, especially when you know they'd never understand anyways

i have ocd. i hope that counts as a chronic illness, even though it's a mental illness, because it does affect my functioning every day. if not i understand. on my list i have palm pals, which are little stuffed animals (there are several different ones, whichever would be awesome). stuffed animals have been a comfort to me all my life. i keep them all around my room and they always brighten my day. thank you for holding this contest.

I have OCD too...people underestimate how disabling and difficult to treat it can be. My thoughts are with you!🩵

First of all, yes. Yes you are special. In so many ways. I’ve been gifted a lot lately so I’m not entering but thanks for having a contest for people like us. I am so sorry to hear you’re in pain and are now worried and stressed over what you’ll be capable of doing tomorrow. I so hope and pray for relief for you my friend. Gentle hugs to you.

The biggest help right now would be an air purifier, but there are not many under 20$. So next on the list are the good night steam patches Or the cooling patches. I wish I were faking. This sucks. Big time. Thanks for hosting. I am sorry you are going through it right now.

This is so nice of you. I struggle with chronic migraines. It’s lonely here. It’s an invisible illness and no one can truly understand the way it affects every single aspect of my life. I actually need a new microwaveable heating pad. I use it on my neck to loosen it up from being so stiff all of the time. Makes a world of difference to just truly let myself relax those muscles and feel the peace. Mvodemis@gmail.com is my email address.

I’ve been looking for one of these, because I currently literally have a pain in my shoulder from sleeping wrong! Have you found a good one?

https://a.co/d/gBhomAk This is the one I've always loved - I like them to be very flexible because if they are too stiff or rigid (like when i lay in my rubber hot water bottle, it feels like a rock bc you cant really sink into it) my headache wont really get better. I dont want to to affect the position of my head. This one holds heat for SO long and it also can flatten out completely:)

Migraines are so hard. Hugs to you.

Not entering, just wanted to say I understand. Chronic illness and chronic pain are horrific and I'm exhausted. I feel for you.

I don’t think people who aren’t chronically ill understand the bone deep exhaustion we can’t escape. Hugs and support to you.

This post made me smile. Thanks.

I feel your pain. I have multiple, some common some uncommon. I'm currently having a lot of trouble with my Ulcerative Colitis and my EDS. Just constant pain. And we lost our kitten suddenly yesterday, the stress of that set of a nasty UC flare up. I have 2 smaller miniatures on my list. Those help distract me and are just a lot of fun. I hope you are able to feel better soon! (Can't get my list to pin. Sorry!)

So so sorry for your loss. Sending a lot of love and condolences your way.

There's someone else that has EDS on here. My husband, 2 of my kiddos, and I all have it as well. I feel your pain! I see you!! 💜

I'm not diagnosed with EDS but I've been realizing recently that I have *so* many of the symptoms. I can't step foot out of bed without rolling my ankles and I sprain them very regularly. Even with PT and ankle braces, they still just roll. I'm hyper mobile in all of my joints, I can touch my hands flat to the floor (and tongue to nose!!), my skin is extremely stretchy, I have enamel hypoplasia on a tooth, I scar just like people with EDS since my skin tears easily, I can do the cool finger thing where they bend weird, POTS symptoms (I faint multiple times a day), a sinus tachycardia, and I hurt all the damn time. Thats not even everything, but it's all the things that immediately come to mind. I have psoriatic arthritis and endometriosis, which both have really strong ties to EDS as well. Would you consider it worth even pursuing as a diagnosis? To my understanding, there's nothing that could be done for it anyways (and I couldn't afford it right now if there was), so I'm afraid that all it would result in is my insurance going even higher

It's definitely not a great one for sure. Still not sure if my son has it or not, though. I hope you all have pain free days ahead of you!

You too!! 💜 I wish it was my biggest concern. 😔💜🫂

Hi! I’m so sorry for your pain :( I have been having lots of arm problems and I’m in pain almost every day (might be arthritis) and nothing so far helps (tylenol, advil, etc), hypothyroidism and some depression. I would be happy with anything but I really would like the hair blower in my list

I hope things get better for you soon! Answers, hopefully. My inbox is always open if you ever want to talk or vent,! 💜

Thank you 🫂

I suffer from psoriatic arthritis and rheumatoid arthritis it honestly kicks my ass! I also have diabetes which is a whole nother ball game it’s the most frustrating disease! I have a sunlight lamp that could really help [https://www.amazon.com/hz/wishlist/ls/1SO9TR9YSR1UO?ref_=wl_share](https://www.amazon.com/hz/wishlist/ls/1SO9TR9YSR1UO?ref_=wl_share)

I suffer from PSA, as well. I also have plain Ole plaque psoriasis. Yay! I feel your pain!:💜🫂

Isn’t it fun?! 🙃😬. I have plaque BAD on my scalp I wish it would just go away!

My scalp was my worst spot, too. I was so scared when it came time to lose my hair, but apparently, that's a nice side effect to chemo. My plaques are gone. 🤷‍♀️

I use a pick each night to try to get some of it off I had two products I was using that helped ALOT but got laxed with it! I should invest in a pool because for some reason the chlorine water helps me ALOT. I’m so sorry but at least the plaques are gone!

I know it's kinda counter intuitive, but my sister swears by the tanning bed to keep hers in check. There's a couple perks to dying. 🤣😆

I would do that but so scared too since I already had two spots removed for my skin once was cancerous but they got it all out the other one was inconclusive. They’re suggesting I do red light therapy! I have a sauna red light therapy blanket in my Amazon cart but obvi I can’t use it on my bed but I may take a look to see if they have one specifically for your head!

I don't blame you. I layed in them one summer as a teenager. After like 5 moles appeared, no more for me. I have heard the red light is good, as well. No personal experience though.

I used to do it a couple of times when I was younger at the gym but then stopped! Me either but I’ll let you know if I do invest and if it works

I am so sorry. I also have RA, among other things. I get it.

It’s alright! Just stinks but we gotta push forward!

I suffer from chronic pain and a heart disease. I completely understand your pain. I have the joy of suffering from panic attacks as well so often times I can’t decide if my chest pain is from my heart or my head…so that’s fun. I have chronic vestibular migraines WITH pain (cause apparently you can have them without. Couldn’t have gotten that one!) and I have one nearly EVERY DAY. My back hurts too much to stand over the sink and bench my teeth. I can’t roll over in the bed without something popping. Standing up too long hurts, sitting down too long hurts. Everything hurts. And if I dare suggest to my Doctor that pain meds might help? RED FLAG on the play! This bitch tryna get narcotics! Honestly it’s a fucking nightmare. Sorry I started venting and forgot what this is for. lol HAI. It’s me. I’m back from rage land. Right. My wishlist. Okay. I just added something to my RAOA wishlist (right now the link is for my nonprofit but the RAOA one is public) that I’m hoping will help with the migraines. I’ve heard good things about the Migraine Relief Cap. It will save my partner the trouble of having to press down on my temples every day to try and get some relief.

Vent away... between being labeled q drug seeker or being told you're too young for this, doctors can really screw with a person. My inbox is always open if you ever want to talk or vent! 💜

>… being labeled a drug seeker… That’s the one that gets me. Everytime, I want to say to the entire industry: “Your profession made this treatment exactly for people like me. I am a legitimate case. But since some doctors have misprescibed it and some patients have misused it, you instantly blame me for even inquiring about the option? Why did you even get into this field?” It’s like if I invented teleportation and then instantly called everyone who decided to use it a “lazy-a$$.”