Ankylosing Spondylitis

I joined here to push myself and give myself a voice among people who might hear me.

I am a writer whose voice was scrambled by a head injury and chronic illness… Everything in my life has been scrambled if we are honest😂…

But, my writing is something I need to get a handle on because it’s the one thing I can still do one the days that I can’t move and can hardly breathe…. It’s the thing I feared the most in losing..

So, we’re starting somewhere.🤷🏽‍♀️

So, yesterday I had a list of things I wanted to get done, but I only completed one.

I did my laundry… ✔️
The cold and pain kept me from moving so that was my biggest accomplishment.

Today, the goal is:

✔️folding and putting it all away.

I want to do other things but that will be the biggest thing.

So far I have:

Eaten Breakfast ✅
Taken all my meds ✅
And I am about to take my breathing treatment..✅

We shall see how the rest of the day goes…

Wish me luck 🥰

#Asthma #ChronicIllness #TBI #Jointpain #ChronicFatigue #AnkylosingSpondylitis #Depression #ADHD

Hi, my name is RavencrestPWCrew. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #ADHD #OCD #Grief #UterineFibroids #Stroke #MixedConnectiveTissueDiseaseMCTD #PanicDisorder #ArousalDisorder #Psoriasis #Arthritis #PulmonaryArterialHypertension #ChronicIllness #ChronicInflammatoryResponseSyndrome #Lupus #RheumatoidArthritis #DancingEyesDancingFeetSyndrome #AdenoidCysticCarcinoma #Allergist #CentralSensitizationSyndrome #DentateCerebellarAtaxia #IdiopathicPulmonaryFibrosis #RetroperitonealFibrosis #DegenerativeDiscDisease #AnkylosingSpondylitis #SleepWakeDisorders #MentalHealth #SwallowingDisorders #DemyelinatingNeuropathies #NeurofibromatosisType2 #ChronicDailyHeadache #HereditaryBreastAndOvarianCancer #Cancer #BloodCancer #ColonCancer #MiniStroke #Coma #CommunicationDisorders #ObsessiveCompulsivePersonalityDisorder

Hi, my name is SoundExcape. I'm here because of my health

#MightyTogether #AnkylosingSpondylitis #Depression #SleepApnea

Now let me start by saying I'm not adverse to opioids in the right circumstances, but we all know what a mess Purdue Pharma and others have made. Anyhow, my partner's back conditions continue to worsen. He's tried every single treatment available to him. Nothing works except a Radio Frequency Ablation which has to be done every 6 months. At the end of the 6 months period last time he had a job change which of course means a change of health insurance. He went from BCBS which was amazing for him to United Health Care and Oxford. They have basically tried to kill him over and over again.
Their latest idea was to put him through unnecessary test injections before the RFA which they openly approved as medically necessary. Then even though he had over 80 percent reduction in pain, they denied it as not medically necessary. They did it all through the appeals process and it is abhorrent.
Then the other day we get a call from one of the insurance reps asking about his conditions and openly pushing opioids as an alternative to the surgery when he first off can't take them because the interactions with his medications (which he had just finished confirming his med list with the rep) would be catastrophic. It is just beyond horrific honestly. And after the first no I'm good on Opioids, that should have been the end of it. In fact it shouldn't have even been brought up by them as a suggestion. It was terrifying honestly to think that this is still happening despite court cases and the amount of public backlash and everything. Direct from the of course publically traded United Health Care (and of course the whole Optum Pharmacy management branch who they own). I am appalled. I am disgusted. I am beyond enraged.
#opiod #medications #AnkylosingSpondylitis #MentalHealth #Fibromyalgia #CPTSD #ChronicIllness #Migraine #UnitedHealthCare #HealthInsurance #ADHD

Hi, my name is Faith. I'm here because I need inspiration and support from my community, a community who knows what I'm going through and facing. it's comforting knowing I'm not alone. I appreciate you all. Thank you. ❤️💙💜

#MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #PTSD #ADHD #RheumatoidArthritis #AnkylosingSpondylitis #Lupus #CeliacDisease #Grief

Hi, my name is Rafael Laranja. I'm here because

#MightyTogether #AnkylosingSpondylitis

I know that in December many people are feeling tired and overworked. The problem with ankylosing spondylitis is that I feel that week even after a month's holiday.

I am so unbelievably tired. Tired in my bones and in my mind and in my heart.

This morning my legs feel like they are filled with lead. I can hardly walk from my car to my classroom. Colleagues literally speed by me calling out greetings.

It occurs to me how different our day is going to be. Oh, I'll smile, make jokes with the kids, chat with my colleagues but I'll be doing it from an empty tank.

My little energy tank is empty. Unlike most people I can't just top it up- I have tried. I'll be using one of my strategies today, one that I use often: Fake it till you make it. Or in my case: Fake it till you can go home and lie down.

How do you explain this level of exhaustion? You can't. And so I don't try anymore because it just sounds like whining. I do my best and most days that is enough to get me to the end of the school day.

Then my pain and exhaustion and I go home and lie down.

Until we have to do it all again tomorrow.

Sending love and light to all of you with whom this resonates.

I have ankylosing spondylitis and fibromyalgia. People can't see how difficult some days are. If I'm walking ok they think all is well. But on the inside is such pain and fatigue. Some days are hard to function at all. I am so tired of having to pretend everything is ok because I don't want to be that annoying person who is always complaining. It gets to me not being able to share how I'm feeling. Also going to work every day is so difficult. People haven't got a clue what it's like.

Hi, my name is SleepySquirrel. I want to connect with others who suffer from chronic pain, illness, and fatigue

#MightyTogether #AnkylosingSpondylitis #Asthma