#dercumsdisease

MOST RECENT

Being ill has brought back my love of wire wrapping. I can't do much clay work when I'm bed bound...but I can wrap. Made this tonight and it brought a smile to my face. Should I list it? I'd definitely want it on a thicker chain though. Sorry I haven't been around a lot, hopefully my health will allow me to make more soon.

Skinnflådda fötter gnällde om vilodag... då blev det 10 minuters strafftillägg. Här bestämmer faktiskt jag!
Crosstrainer 30 min, level 6, 64-70 rpm
#trotsasjukdom #träning #viktminskning #vägrarvarahandikappad #dercumsdisease

Thanks to another of my #chronicallyfabulous friends, I downloaded the Plant Nanny app to help remind me to drink water throughout the day. I’m really bad about remembering basic things like that. This is a cute way to help! 🌿
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#chronicillness #plantnanny #chronicallyraven #drinkwater #stayhydrated #water #dandythedandelion #lupus #spoonie #ehlersdanlossyndrome #hemiplegicmigraine #mastcellactivationdisorder #hashimotos #dercumsdisease #lipedema #lymphedema #spooniewarrior

15 min styrketräning, 20 min crosstrainer- level 8-12, 67-70 rpm
#trotsasjukdom #träning #viktminskning #vägrarvarahandikappad #dercumsdisease

Trotsade blåsorna! 10 min hård magträning, 20 min crosstrainer - level 8, 68-70 rpm
#träning #trotsasjukdom #viktminskning #vägrarvarahandikappad #dercumsdisease

This is the cost of half my medications per month without health/medical insurance in the US. A week later I had to pay another $1360 for the rest of my meds for the month. This doesn't include the separate $294 at the hospital pharmacy where I can get a particular medication at the cheapest cost. Over $3000 per month as a chronically ill, unemployed person. Yay me 😳😂#healthcare
This post is to show what out of pocket cost for medications are for those of us who are chronically ill have to fork out for medications if we do not have medical insurance. How does someone who cannot afford to pay monthly insurance premium payments afford the "cash price" as below??! To put it in perspective, what I pay $148 with insurance costs me $776 without.
So take this as a reality check from me, someone who was blessed enough to have had a cadillac plan and can get back on some form of insurance soon, about what those less fortunate deal with in America. This cost plus the other medications I pay for per month is almost equivalent to what I had to pay for a week's stay in a private room plus 3 specialists and a shoulder surgery with a specifically ordered to fit titanium plate in a private hospital in Malaysia.

I don't have health insurance at the moment thanks to my ex husband who told me I was enrolled in the COBRA plan when he was fired from his job in January. He subtracted my half of the premium payment every month although he had decided *not to enroll* but never informed me of said decision. Now it is to late for me to enroll into any plan bc the 60 day enrollment period is over. So simply put, I'm totally and utterly screwed!! I wonder what all those who insisted he's such a lovely guy will have to say about this? 😳😂😂
#healthcare #reallife #dercumsdisease #americanhealthcare #divorcedrama #morelegalcosts #badintentions #karma #iamgoingtofixit #stillblessed #grateful

It’s today’s episode of WHAT THE F*CK IS THIS?! Sorry...caps. But I am flipping out. I didn’t even know this was on the side of my hand. It was like a small blister & then I noticed one of those super itchy red bumps just hanging out nearby. After looking at the photos (because it’s not often I look at that blade of my hand) I was upset to see shiny skin. Again. I think I am definitely going to revisit this old Doctor...
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#scleroderma #connectivetissue #rarefatdisorder #lipedema #lipoedema #dercumsdisease #signsandsymptoms #mixedconnectivetissue #ehlersdanlossyndrome #chronicillness #raredisease #pain #newsymptoms #isthisscleroderma #worried #anxiety #spoonieproblems #warriors

How can we learn to love a body that has given us so much trouble? It behaves in ways that are less than ideal. It might look different than others’. But it’s the only one we have, so we have two choices: hate on it and feed it negative energy (making it hurt more, and become more sick); or love & accept it, potentially healing it in unimaginable ways... your call.

A lot of very nice people have offered to help WM. Those who cannot afford to donate to her fundraiser, have opted to select items from her Wish List on Amazon. If you’d like to see the list or send an item, the link is longer than Snuffleupagus’s tail! https://www.amazon.com/gp/aw/ls/ref=/132-2742999-5956101?ie=UTF8&%2AVersion%2A=1&%2Aentries%2A=0&lid=12YK95NGJT6FN&ty=wishlist
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Thank you so much for the love & support you all show us on a regular basis! 💕
#iamchronic #chronictheill #chronicillness #chronicallyraven #awarenesstoys #astridtheunicorn #isotheastronaut #innerworkings #heart #anxiabeast #elletheoctopus #dercumsdisease #plushiepenfriends #plushies #plush #ehlersdanlossyndrome #mastcellactivationdisorder #hemiplegicmigraine #chronicpain #blogger #amazonwishlist

Enjoyed outside and some good music again today. Perfect weather, but I had to roll up in the quilt to avoid sun damage. It was nice and warm.
#nomakeup #shorthair #nofilter #natural #naturalwoman #warm #outside #music #musicislife #favoritethings #skeeterdavis #theendoftheworld #chronicallyfabulous #fightingforthis #fibromyalgia #spoonie #awarmplace #dercumsdisease #dystonia #akathisia

Let’s talk about Scleroderma, shall we? Nearly 9 years ago, my Doctor sent me to a Rheumatologist for a possible Lupus diagnosis, based upon my blood work & symptoms. This Doctor apparently looked at my file, entered the room with me. Not once in that encounter did he touch me. He ordered no further tests. He just looked at me and said flatly, “You have Scleroderma. Basically, the condition causes your insides to turn to stone. There is no cure, and you will die. There’s nothing I can do for you. I’m sorry.” And he left the room. I barely remember walking to the check out area. Blinded by blobs of tears that wouldn’t fall. Just hanging out in my eye. I paid. They asked if I wanted to schedule another appointment. No.
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I sat in my car in their parking lot for almost an hour. I looked up Scleroderma on Google. At the time, not many of the symptoms fit. A few, but they also fit Lupus and other similar conditions! How could he just tell me that without any further evidence? I called my Mom. I called my doctor who referred me, “Honey, maybe it’s time you stop fighting and accept your diagnosis.” She said that. No. I accept NOTHING blindly. You show me! You prove it! I am no fucking sheep. Prove it.
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Flash forward. Here I am...posted my confirmed diagnosis list yesterday. It’s horrible. I am a medical disaster! And I sit here wondering what is the fucking point of it all? Why am I here being given issue after issue? Because I’m strong enough to take it and keep screaming a warriors cry to push through each day? Because I am a loud mouth who will stand up and scream WE DESERVE BETTER! What is my life’s purpose when I can’t even get up out of this damn bed some days? Where is the Warrior then?!? It’s tattooed right there in my skin? Am I a Warrior, or am I a weakling who will curl up in a ball and pray for Death to save me from this battle? I have my days.
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Today, I looked up medical conditions with shiny skin, skin that glittters, shining skin conditions. You know the ONLY thing that returned? Right there in black & white, and in my face. I looked at pictures of skin that looks just like mine, and some far far worse. *CONTINUED IN COMMENTS! #scleroderma

Det var en nydelig kveldshimmel jeg kjørte fra på min tur hjem i kveld.
Jeg føler meg så takknemlig for at jeg får muligheten til å se naturens skjønnhet hver gang jeg går ut av døra. 😍

Things that get me through the day? My @lularoe leggings! Unless I have no other choice, they are the ONLY thing I will wear for pants each day. Being so sick with all these rare & chronic things, I love the incredibly soft material of the leggings. Once on, it’s like I’m naked! No tight pants cutting into my waist, no restrictive material to keep me from relaxing & being comfortable. The material is feather light, so soft & breathable! If Heaven were a pair of pants, it would be Lularoe leggings. I’m convinced. I’m on disability, so they are a pricey purchase that I can only afford once in a blue moon, or through EBay resales. But if the folks at Lularoe are reading this, you’ve got a lifetime supporter in this girl!
Chronically, Raven. 💜
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#lularoe #heavenisapairoflularoeleggings #lularoeleggings #softmaterial #stimming #chronicallyraven #chronicillness #chronicpain #comfortableclothesforspoonies #comfortclothing #relaxing #resting #lounging #ineedmore #chronicillnesssucks #lymphedema #dercumsdisease #lupus #spoonie #zebra #letmerepresentyou #plussizefashion #blogger #wordpressblogger

#transformationtuesday I couldn’t get the full picture on one page so you’d could see the full extent of picture. My life changed when I got my first diagnosis now diagnosed 8 chronic illnesses most surrounding the #lymphaticsystem I’ve taken control of my life and thank god I did. No longer do I hate myself granted I still have bad days with pain. I found my formula and for me it works, I’m over the moon it’s working for others to! Primarily I did it for me but I realise that wasn’t my my only mission, to the masses I’m here I’ll help you best I can, follow, ask questions, none of this has happened over night, I will say one thing apart from swimming I’ve not set foot in a gym all this has been done from home or outside. You are the key holder of your own destiny but there are those of us that will help you along the way. #chronicillnesseswontstopme #lipoedema #lymphoedema #dercumsdisease #fibromyalgia #osteoarthritis #eds #hypermobility #chronicfatiguesyndrome #fitnesswomen #fitnessforhealth #fitnessforlife #fitnesstransformation #fitnessweightloss #fitfam #ketogenicdiet #ketogenicliving #ketotransformation #ketogenicweightloss #fasciablasting #rld #drybrushing #cuppingtherapy #hypoxi #nosurgery #changingmybody #watchmewin #nevergiveup💪

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