We’d love to hear what you've learned or what has helped you manage, treat, or accept your achondroplasia diagnosis.
Share your hacks, tips or advice for living with achondroplasia in the comments below. ⬇️
#RareDisease #Dwarfism #Achondroplasia #Parenting #Caregiving #ChronicPain
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Life with achondroplasia can come with a lot of challenges, but not all of them are expected. Has there been one particular aspect that’s surprised you the most (good or bad)?
Whatever they may be, share your surprises with us in the comments below.
#RareDisease #Dwarfism #Achondroplasia #Parenting #Caregiving #ChronicPain
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Do you think it's accurate? How is the representation? Let's hear your recommendations.
#multiplesclerosis #ChronicIllness #Depression #newlydiagnosed #MightyTogether #Disabilities #Caregiving #Disability #Support
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If you have to take prescription medication to manage your health symptoms (there’s no shame in that!), sometimes those prescriptions can be very expensive depending on your health insurance plan and how many medications you have to take.
To alleviate some of those costs and make it more manageable to get the medication you need, prescription discount services like GoodRx can be super helpful. (Mighty staffer Kat recommends using their mobile app!)
What have your experiences been like with prescription cost-cutting services? Did they help you save money? Or were they too much work for what the benefits ended up being?
#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe
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I started my #Recovery journey in 2014 and I found a new way of life immediately. No one warned me the NEW was NEW Chapters of Life, Chapters which would not finish before the next starts….
In 2014 I had to have a #lumpectomy from my right #breast .
In the beginning of 2015 I was served #Divorce papers. By the end of the year we reconciled.
In 2016 when I should be excited my eldest is graduating from High School, simultaneously my second born had to have #OpenHeartSurgery .
In 2017 second born lost his first grandmother and I got to fly him from CA to ME to see her take her last breath.
In 2019 I was the proud #homeowner with my #husband of 10 years. We were finally making the #americandream .
In April 2020 I get a phonecall my father has had a #brainstemstroke I had to come home to Maine to assist with #lifeendingchoices .
In May 2020 my Mother is diagnosed with #OvarianCancer .
I am now temporarily living with my mother, being a #Caregiver , yet my #husband #mycaregiver #Abandoned me and then requested to take #fullcustody of #ourdaughter via the #Divorce .
In July 2021 my Mother sadly passed away. I have become an #Orphan too quickly. #Grief and #Depression is all too real now.
In March 2022, My second son has now come down sick. Doctors spend months trying to figure out why. It takes until July 2022 to diagnose him with #Sepsis #Endocarditis he spends 2 weeks #hospitalized and another 8 weeks on a #PiccLine at home.
In Dec 2022 he is given a clean bill of health and decides to come live with me in #Maine .
In Feb 2023 he starts to become tired easily, slight cough, and finally passed out in March.
March 10th he passed out at home. We called #911 and the #localer #Misdiagnosed him.
March 13th I took him to #mainemedicalcenter where he was hospitalized for 7 days with #Pneumonia and possible #Endocarditis where he was then transferred to #boston .
March 19th upon arriving to #brighamwomanhospital - #shapirocardiovascularcenter he underwent dozens more blood testing, procedures, exams, etc.
Today March 27th he is having #OpenHeartSurgery Number 2 to replace the pulmonary valve, pulmonary conduit, remove large vegetation.
In a couple of days as scheduled I am also supposed to exchange visitation with my daughter so I can visit with her for Spring Vacation. However my ex is trying to knit pick about my schedule and if I have ample time to spend with our daughter while my adult son is in ICU. Our daughter is 11 years old.
I really feel in the last multiple years I have had one catastrophic event after another without time to process.
I have other things like major moves, loss of therapists, and other medical mental health issues. I am so exhausted today scared sick for my son.
I am so annoyed how some people enjoy kicking others while they are down.
I don’t even know when I am going to sleep again right now. I have so many thoughts, concerns, to do’s in my head - I can’t sleep it is going to drive me crazy.
I am so sick of being in a chapter book that doesn’t let the chapters end.
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Through MSFriends you can speak with others living with MS too. I volunteer there and it's a powerful program. Sign up by calling the MS Navigators at 800-344-4867, or visit tinyurl.com/z5vsr4nr
#chronicillness #Depression #newlydiagnosed #MightyTogether #Disabilities #Caregiving #Disability #Support
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WHAT A JOURNEY! I have been AWOL from here for five months! I have been pretty ill for most of that time. My doctor put me on two new meds in late September and it has taken me this long to get out from under such nasty side effects that I was literally debilitated. My doc wouldn’t hear me. All she saw was my weight.
I finally did some research on the drugs’ common side effects and took myself off of them, tapering the dose carefully to prevent shocking my body and reduce withdrawal symptoms. In addition, my doctor had encouraged me to taper off pregabalin (Lyrica) because it did not seem to be helping the way it used to and I believed I was suffering from side effects from this drug as well.
It turns out I was right on both counts!
Once off the first two meds, my anxiety and several other side effects vanished. But here is a celebration: when I got off the Pregabalin my apathy was gone! I mean that when I stuck to my routine of hiding in my nest, I found I no longer wanted to stay there. I sincerely wanted to get up and do things. I started organizing myself, cleaning, doing a LOT of healthy self-care. I started walking again.
I also finally got an appointment with a therapist after a six-month wait list. I felt at ease with her right away and shared my story. In our second session she told me I have Generalized Anxiety Disorder and complex PTSD. What?!
After 57 years of suffering, she validated my traumas. She heard me and said I’m making sense and it looks clear to her that I have suffered. She wanted to discuss how we are going to rewire my feelings around the trauma. What?!
I let my tormentors (family members) know about the news that a professional had validated the trauma they caused and to please leave me alone while I heal. It felt like I put down all of my “baggage” and was free. Free of all of that self-doubt, free of confusion, of shame, of grief, free of depression, of guilt, and of even more of the physical pain I had grown used to.
It wasn’t my fault! I’m so happy it is amazing! I still get triggered, but I’m managing pretty well and will be starting EMDR therapy this week. And I still have chronic physical pain from fibromyalgia, but it is much easier to manage since I felt validated.
I also was diagnosed with sleep apnea and use a CPAP machine to make sure my brain gets sufficient oxygen all night long. This has done wonders for my brain fog, lack of energy and general sluggishness.
Do NOT go off any medication without discussing it with your doctor first. But DO look up it’s side effects and make a list of any that you experience… and think about asking for an alternative if you think those side effects are holding you down from living.
If trauma is what keeps you down, ask your doctor for trauma resources.
If you wake up tired, get a sleep study. You can do it remotely right from home. You deserve to breathe all night long.
Get the help you need and FEEL BETTER!
Drug Info: www.drugs.com
#apathy #Depression #Anxiety #Fibromyalgia #GeneralAnxietyDisorder #ComplexPosttraumaticStressDisorder #Caregiving #SideEffects
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