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Abnormal or par for the course?

Should I be having a harder time with normal, everyday issues because of what I’m going through???? Are you??
#everyone #ChronicDepression #Fibromyalgia #Epilepsy #Auto Immune#RapeSurvivors

5 comments
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Tips and talk

Hi my name is Kayla donahue i am 18 years old . Cleveland clinic is where i go for my doctors … anyways So I recently just got a port put in my chest and I haven’t used it yet I’m aloud to just haven’t had time . Does anyone know if I will be able to smash my meds up and put it through my port? Bc I also have g-tube so when I push stuff through it like medicine it clogs the tube . And the reason I asked u that is bc my doctor said he don’t know if some of my pill ate actually getting resolved . That and when they access my port will I have to keep the extensions on there at all times even if I’m not using them ? Also if u have anywheel chair tips for advice on anything fill free to message and comment .. #ChronicIlless #GI #Auto immune

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Is there any help for someone on SSDI and needs a vehicle fixed?

Hi there. I’m laying in bed crying, stressed TF out big time. I am on SSDI and unable to work due to medical reasons. I don’t get very much every month in my disability payment.

Tonight I ended up with a flat tire. It was then I realized I barely have money to afford my basics every month. And now needing a new tire has me stressed. I also need my motor mounts replaced, new brakes, an oil change, and of course the other 3 tires as well. I don’t have the credit to pay that way. I don’t have family or friends that can help.

I don’t know what I’m going to do. I need my vehicle to get me to appointments, medication pick ups, shopping, etc…

Does anyone know of any help someone who’s on disability can get with these repairs? I live in Phoenix, Arizona if it helps.

#Ssdi #Disabled #Crying #finances #Auto #MiniVan

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CRPS/RSD

#Complex Regional Pain Syndrome is invisible pain. I look normal outside with a slight limp and slower walk due to botched orthoscopic knee surgery. Took 5 years with no income to get disability. My life partner left me because of my illness which took over everything. No income, no place to call my own, major depression PTSD, #Auto immune disease. I now have Breast cancer and had life threatening reaction to chemo. #Stress triggers diseases. I too have days of unruly home and self care. No friend really understands not until I was diagnosed with cancer!

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#CheckInWithMeMyGoToMovies

"What movies get you through tough times?
Share your go-to movies for when you’re struggling by posting a Thought or Question using the hashtag #CheckInWithMe. "

My Go To Movies:
#CheckInWithMe
#checkinwithmemygotomovies  
are:
If my kids are home:
No DOUBT! #Tangled ! Love that movie and so do my daughters it is good for all of us. My #SpecialNeeds daughter with a#servicedog (she's 8) my well child who is 10 and for Mom who is on palliative care with systemic #Scleroderma  Eugene is hilarious!

If it is just Mom home (aka me)
and I am having a decent health day aka: no falls, #incontinence, headaches, low sugars, #pvcs, belly pain, shortness of breath, chest pain or #raynauds and I can type - I am all about #theProposal Ryan Reynolds make is all better (betty white ...too)

Finally: ON a bad #AutoImmune day #Scleroderma day #aslan puts it all in perspective. Until the next day. Because there WILL indeed BE ONE. Yes. "Courage Dear Heart"

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#Scleroderma #Crest

#Scleroderma
#Gastroparesis #raynauds #Hypoxia #PVCs #Anemia . #pottssyndrome #EsphogusDismotility #GERD #hashimotos #Hypoglycemia #Migraines #ReactiveAirway #HiatalHernia #So MuchMore....= #autoimmunecringeworthy ... that's how I feel anymore.
Yet with still with so many saying I look "so great!!" on the outside (well meaning, of course,) it's a common thing said to me / people with an auto immune, Scleroderma, chronic illnesses.
But I find explaining myself now that my "problem list" is SO LONG that I almost feel like I AM the nightmare.
The problem.
It's cringe worthy.
And isolating.
And lately,
Anxiety producing, which is
something new.
I can't put my finger on the pulse of what I'm anxious "of" exactly, but the "feeling" is flat out horrible.
When I go to a specialist they want me to stay "in their lane" only = i.e. not discuss anything other than what they specialize in.... This becomes difficult when your disease affects so much (see list above) h
If I get told a new diagnosis, (like recently one of, #Gastroparesis ) after so many other diagnosis's, it wasn't so much surprsing or earth shattering as it was worrisome...
The conversation was short.
Will we ever talk about it again?
Is that it?
Do we move on?
Is it now another word on my list?
And I say that kindly as my Dr's are great. But you see what I mean?
"What now?"
He goes to another patient.
I have another Dr's appt.
Did that happen? Matter?
On the outside, I look exactly the same. Internally obviously "we" know the "drill"... I asked "is there a cure?" "no, no there is not".
But I get explaining this messy situation I am living or sharing it or talking about it to people would be probably odd.
But right now as I may be a #Auto ImmuneNightmare on the inside and appear ok on the outside. I'm actually feeling #Anxiety and #Uncertainty & I wonder about all the different diseases /diagnosis's progressions.
But I guess these #Thoughts come with the territory.
Thanks for listening.
@SamanthaGill

4 comments