spoonielife

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    Would anyone watch YouTube videos

    Hey everyone, I have been thinking about starting a YouTube channel, mainly to make videos about hacks and tips to living with a Chronic illnesses, but also thinking about doing some vlogging as well To show what it’s really like to be chronically I’ll , would anyone be interested in watching? Or have any video ideas? Would really like to start it but I am scared that no one will watch haha, any thoughts are welcome😊😊 #EhlersDanlosSyndrome #ArnoldChiariMalformation #Syringomyelia #Gastroparesis #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Anxiety #Spoonie #Vlog #spoonielife #PelvicOrganProlapse #ChronicPain #Hope

    4 reactions 8 comments
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    Hugs to all

    Everyday we struggle I know we aren’t all the same but in many ways can relate. You smile the best you can and continue as nobody knows your struggles because we do our best to hide them. #warrioron #Support #spoonielife

    1 comment
    Poll

    Battery theory - our energy is like a used cell phone. We can charged quickly or we lose power before we get up. Tightrope theory - some days we can balance well, on others anything can throw us off.

    54% ●
    Spoon theory
    21% ●
    Battery theory
    18% ●
    Tightrope theory
    8% ●
    Something else - please tell us in the comments
    91 votes
    Post

    New Here!

    Hi, everyone! My name is Carrie. I’m new here, looking for people that understand what I’m going through. I woke up one morning 4 years ago with pain in both elbows, and my health proceeded to rapidly deteriorate from there. I have severe chronic joint and bone pain that jumps around to different areas of my body, fatigue, dizziness, and brain fog. It’s a not-so-fun game to guess where it’s going to strike on any given day, and there’s no rhyme or reason to it. I have frequent flares that can completely knock me on my butt for days at a time, but even on flare-free days I live my life at a level 5-6 on the pain scale. Flare days are SO much worse! I’ve seen several doctors, including 2 rheumatologists, and all my bloodwork and scans come back normal. Doctors think I’m crazy, I even had one tell me that I should seek therapy to “learn coping skills to deal with minor aches and pains.” 🙄 My last rheumatologist tentatively diagnosed me with hypermobile Ehlers Danlos Syndrome, and then promptly retired, so now I get to start all over again with a new rheumatologist in September. I’m sympotomatic of rheumatoid arthritis, but my rh factor is negative. It’s all so maddening. I went from being an active mom to a shell of myself in less than 2 years, and now I battle depression on top of it. I’m a visual merchandiser for a big box retailer, so my job can be very physical, which doesn’t help my health issues, but I can’t quit my job because I have kids and a mortgage and I need the health insurance. Some days I honestly feel like I’m losing it. Sorry for the long post. I have a very supportive partner, but wanted to get to know some fellow spoonies that understand my struggles first-hand. ❤️ #HEDS #medicalmysteries #spoonielife

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    Tortoise Thoughts

    Hello all.
    This is Meldrew, he's my tortoise.
    Sometimes he walks faster than most people can imagine, other times he walks slow, but he always gets to where he is going eventually.
    Some we can feel like the pace we are going is like that of a tortoise, but remember, as long as you get to where you are heading eventually it's all okay. Don't worry about the pace you are going. ❤️ Have a fantastic day everyone.
    #tortoise #pet #Ehlers -Danlos #EhlersDanlosSyndrome #Ehlers -danlos #hypermobileehlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #EDS #ChronicFatigue #ChronicPain #ChronicIllness #Spoonie #SpoonieProblems #spoonielife

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    Open Enrollment 2022

    Requesting Memes About Healthcare and Health Insurance, Please.

    Healthcare Open Enrollment Is Stressing Me Out.

    A Health Insurance Broker Helps Me Each Year. I Started Out on Medicare Original The First Four Years. It Was Horrible for My Needs, Did Not Cover A lot of Labs I Regularly Need Conducted for Monitoring My Health.

    2021- I’ve Been on United Healthcare AARP with Optum RX. I Don’t Care for Optum Speciality RX. This Week They Made an Error Which Resulted in Me Not Receiving My Xolair Injections. If You Happen to Like United/Optum, Good it Works for You but it Doesn’t for Me.

    2022- The Big Challenging Are Healthcare Plans Having Networks Which is Very Difficult When You’re Not in a Big City.
    Many of Our FEW Hospitals Do Not Have Many Specialists.

    Today-We Were Looking at a Plan by BlueCross and BlueShield. The Plan has a Monthly Premium of $169 + the Part B Medicare Monthly Premium Which is $170.10 for 2022. Then I’m Told The Plan Does Not Cover Epipens or Hydroxyzine!?!

    Is it Legal to Not Cover Epipens?! I’m Really Upset About This. I Requested The Insurance Broker to Call and Very The Information.
    Monday I Was Prescribed Ketotifen Compounded for Chronic Urticaria. I Learned Today It’s $90 Per Month and Not Covered By Health Insurance.
    #openenrollment #openenrollment2022 #2022 #HealthInsurance #EpiPen #chronicurticaria #Urticaria #spoonielife #Medicare

    Post

    Sudden onset feelings

    Just going about my morning, wondering if any of the companies I applied for will get back to me soon, when I got slammed with a tidal wave of lonliness and despair over my future. Can't seem to stop crying now.
    #Depression #Narcolepsy #spoonielife

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    This was the first 2 weeks of #GBS #CIDP #gbsawareness #gbsawarenessmonth #Plasmapheresis post #COVID19 I had no idea the trials that lie ahead but I charged forward faithfully. My spirit had not been broken yet.

    #chrissystrong #brokennotdefeated #covid19survivor #covidlonghaulers #cidpwarrior #plex #spoonielife #spoonielife #chriss #HashimotosDisease #potssyndrome

    Post

    Any recommendations for low FODMAP, vegan, prepared meals?

    My doctor wants me to try the low FODMAP diet to help with my IBS. I can wrap my head around what to eat and not, but I don't know what I can just buy ready-made. I usually make everything from scratch in big batches, but my fatigue has been unreal lately and I'm ready to start buying more pre-made foods to save energy. Are there any particular brands or anything that have good options for the diet that are also vegan? I'm thinking canned soups and frozen meals, but I know onions and garlic are in everything. Bonus points if I can buy it at the regular grocery store!

    #ChronicIllness #Fibromyaliga #ChronicPain #IrritableBowelSyndromeIBS #spoonielife #LowFODMAP #FODMAP

    Post

    What I've gained from this last year #ChronicIllness #Motherhood #MightyMoms #AnkylosingSpondylitis #COVID19 #spoonielife #positive

    Since getting ill I've had to let a lot go, but it wasn't until I was finally diagnosed that I realized how many things I'd let go, that I'd never gain back. And that there was a lot more I had to consider when making large decisions like school, work, projects I take on as a mother, member of my community or for my employer. This last year with Covid I've given up the most! One of them being my job. While my leaving was only temporary, as I approach a year, I feel like I'll never return. Between Covid and the use of immunosuppressant drugs, homeschooling four kids and my declining health, the idea of returning looks more and more unrealistic, it hurts my heart! It's another part of me I have to give up. I worked my butt off in school to gain skills and busted butt to advance in my position with my company. I LOVE/LOVED my job!! I worked in the operating room and got to see so much cool stuff!! I got to help care for patients and provide a service that both helped patients recover from major surgery as well as ease some of the stress off the donor blood bank system. I'm an autotransfusionist and PRP/BMAC tech (put simply, I get to do fun and cool things with blood!)

    When I started this post I was going to list the things I've had to give up leading up to 2020 but I find myself feeling a little more hopeful in sharing this. Amazing what some writing can do for the soul! So I will share some things I've GAINED over this past year instead and I encourage you to do the same in the comments. Name 2-3 positive things you've gained do to your illness.

    1. I've gained the ability to spend more time with my kids! My youngest (twins) just turned 7 and it makes me sad to know they are my last babies. I love that not only do I get extra snuggles and time with them; but that at the moment, I am the one helping to expand their education. Teaching them to read, write and lear many other first grade skills.

    2. I've gained the ability to bond more with my older kids. They started middle and high school this year, they are distance learning through the school district so I oversee their work and help them when needed. Communication is my number one priority as a mother and this time allows me to build those relationships with my teen/tween-agers. They are becoming such amazing humans! They see my struggle and they go out of their way to bring me breakfast in bed every morning and snuggle. I wake up each morning to at least two of my four children smiling, laughing and snuggling with me in bed. It is the absolute best feeling!

    3. I've gained the ability to be able to rest whenever my body needs it. No waiting till the weekend or after I've come home from work, picked kids up from school, helped with homework, made dinner, gave baths, helped the kids deal with any issues they faced during their day at school and read 7 bedtime stories. I get to take a moment whenever I need it to restore my strength so I can continue to rock this motherhood gig! #LoveLife

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