#crpssucks

[chronicallyillz]

You know you're chronically ill when you are having multiple health issues/ flares, but know the ER will only treat one so, you pregame at quick care to take care of the sinus/ear infection, then go to the ER for the main party of 10+ level pain

[iffrey]

Hey I'd go down in a heartbeat. Even though my heartbeats are weird 😕

[justalittlejess]

There’s not really one specific reason I’m crying right now. I think everything has gotten to be a bit too much and I’m overwhelmed; with emotions, pain, and decisions. I’ve tried letting my control go, but now that I have, people are asking me to make decisions about my future. I think I’m mad because I never see my mom anymore and I see my brother more than I’d like to. I miss having days off-days to do laundry and wear whatever I wanted without the pressure of an upcoming appointment. My employer is running me ragged and then they wonder why it was necessary for me to take six months off. They ask me who hurt me when I’m cranky because of the amount of pain I’m in. I don’t want to say it’s their fault because it’s not. They’re trying to run a business. It’s my fault because I’m stupid enough to keep saying yes before thinking of how I’ll feel when I get home that night without being able to walk around my house. I resort to my crutches that I keep by the front door and walk out the next morning as if nothing happened; as if I feel no remaining pain from the day before. I hate myself for hiding all of this and not letting people help me like I know they would. I miss my friends. I hate that I keep seeing snapchats of everyone moving into their dorms and have to act like I don’t want that life because that’s all I wanted for college. I wanted to live like a normal person but I can’t because of this lurking shadow that might consume me soon. If anybody has any tips for living like a normal person even with chronic pain, please help me. I could really use it

[mortreport]

CRPS, meatcage series. hard day today. i’m tired. . . . #latergram #photographer #photography #selfie #selfiegram #selfportrait #selfportraitphotography #ehlersdanlossyndrome #crps #crpssucks #chronicillness #chronicpain

[kawabezmleka]

I'm proud of myself

[iffrey]

Chronic illnesses, gotta catch 'em all!

[crpssucks]

I can’t be alone in this- Right?

Is anyone afraid some random doctor is gonna take away your diagnosis that you’ve had for years and just call you crazy?

No? Just me?

It’s happened to me once.

He told me I was just emotional and tried to say I have something like phantom limb syndrome even though I have all of mine. Then proceeded to wipe my medical history of the diagnosis and put “emotional” in my notes.

It didn’t help that I cried when I tried to fight him on his new diagnosis.

It doesn’t help to know that doctor was googling what CRPS was in the room with me- It doesn’t help to know he wasn’t trained to deal with nerve conditions

It caused PTSD.

I ended up switching hospitals and teams over it. I changed from a pain clinic to someone who specifically works with CRPS and they put my diagnosis back on my chart.

I’m going in for a nuclear bone scan Monday and I am now having panic attacks that the results (no matter what they may be) will make my doctor change his mind about my CRPS. -When in fact he ordered one to check and see if my CRPS has damaged my bones over the years.

The trauma these doctors have left me with is so severe and I hate it.

I’ve been diagnosed with PTSD over this- I wanted to add this in so you know I’m not using it to be dramatic. I understand the seriousness of the words.

[crpssucks]

When I was little I was diagnosed with OCD and dealt with intrusive thoughts and obsessive repetitive behavior sometimes to the point of self harm.

When I got older and was diagnosed with CRPS people stopped talking about my OCD. Recently, I’ve realized those thoughts and behaviors have never went away. I am going to move forward in letting my doctors know I need this to be part of my care.

I think it’s import that we don’t let other issues fall to the side even though CRPS takes such a huge amount of effort to live with. Hopefully with some treatment for OCD it can help me in my goal to live a better life even with such pain.

But at the same time choose your battles. YOU know yourself best. Find all the things weighing you down and strategically take of the weights you can handle because no matter how small- you are still getting lighter.