clinicallychronically-blog

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I’ve realized that as someone with a chronic pain disorder, my tolerance for pain can be anywhere from “nothing hurts me; I am immortal” to “what is this fuckery? I do not deserve a single bit of pain, not even so much as a papercut”

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My stomach to everything I eat:

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GES and small intestine and bowel transit study starting tomorrow. Whooo.

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me: *goes to the to doctor about my severe chronic pain. explains about my medical history, my multiple chronic illnesses including genetic and autoimmune diseases*

doctor: ".. so how long have you been depressed?"

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You know when you have that one new symptom that you should probably tell your doctor about, but you forget or don't. That's me right now.

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What’s the difference between acid reflux and bile reflux

The difference is the PH levels of the substance and where it comes from. Bile comes from the liver and acid comes from the stomach. Bile is also a very basic liquid and the acid is well acidic. You'd think that they'd cancel eachother out but nope lol. Bile reflux usually comes from when you have your gallbladder removed as the gallbladder stores bile. Bile reflux also can cause gastritis so usually if you have it you are put on a medication to protect your stomach lining. But to combat the acid reflux you'd be put on an antiacids. So that's pretty much the difference.

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I want to run away but it hurts to walk

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At mayo right now

And repeatedly the tests are coming back normal. But I mean that's not a bad thing, I'm glad that my tests are coming back okay but it can be somewhat frustrating.

The next few tests are;

Autonomic test

Gi transit study for my entire gi tract just to see how bad it has gotten.

And a sweat test.

I do so believe that's it. Hopefully after all this we can come up with a treatment plan and move forward with my health!

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Yo girl got her cervical collar today. It feels weird to have your cervical spine actually sitting right. Like... what is this feeling? Lol

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"I thought that that was normal"

-The international EDS motto

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Me: Yeah so my rheumatologist started me on this new medicatio-

A healthy person whose opinion was neither asked for nor appreciated: You should get off all those medications!! They’re filled with CHEMICALS and big pharma is just trying to make money off of you!! Let me give you the number for my herbalist so he can cleanse your body!

Me:

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Appointment Update (Spoiler alert: Best. Appt. EVER)

She was extremely amazing holy shit. Guys. I finally have a primary care. And she's hella.

As goes for appointment details she is putting me in a cervical collar (Neck brace for those that don't know) for my cervical instability. We also got X rays of my neck to see if anything was slipping out of place and or subluxing.

Another thing is that she is going to get a brain MRI. She is checking for Chairi Malformation and or a brain tumor that may be contributing to my symptoms, especially the neurological ones.

All in all she's super nice and knowledgeable, especially with EDS as she's treating about 3-4 other paitents with EDS as well. Needless to say that put me at ease.

BUT, that is the game plan. I get my cervical collar tomorrow and will probably post a selfie with it on because shit man. I'm excited for the relief I'll be getting. I will be wearing the collar pretty much 24/7. Fun times.

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Yo, guys you have no idea how hard it is to take a selfie when your hands are shaking like a mofo. But on a better note I think I look pretty cute. ♡

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Things the Doctors Don’t Tell You:

It is lonely. Family will leave. Friends will leave. You will find yourself on forums and chatrooms, searching in vain for understanding. For compassion.

There is no glory in being broken. Your average disabled veteran or accident survivor will get adulation on a good day, pity on a bad one. You will get pity on a good day, contempt and fear on a bad one.

It is expensive. You will burn through your rainy day savings in the first year. It does not matter how big a house you live in or how nice your wardrobe is, you will inevitably find yourself crying over everything insurance does not cover. The co-pays will slowly kill you. Blue Cross seemingly spites you. You’ll go to the bike shop to tune up your chair, because it’s cheaper than the medical supply store. You will find yourself selling your childhood skateboards on eBay to pay for this month’s meds.

You are public property. Everybody suddenly feels entitled to share their opinion on your body and health. They will stop you in the street and corner you and holiday parties. They will tell you what they think. They will judge. They will intrude. There is no privacy in being an oddity.

There is no control. Nothing ever stays stable for very long. You’ll find yourself having a good month, convince yourself it’s getting better, until once again, you’re in the ER, within inches of your life. You can no longer make plans.

They will look. Say goodbye to anonymity. 

Pain is a constant companion. Every minute of everyday. You’ll never really get used to it, but you’ll learn how to deal with it. How to hide it. There are times it will be so bad you cannot breathe or see. Cannot think. There are times you will want to die and times you’re convinced you already are dead. You’ll find yourself at 3am, staring teary-eyed at a bottle of Vicodin or Oxy. You’ll debate it, fighting as long as you can. And then you’ll lose. You’ll take two, sleep for 16 hours, and wake up in the same burning, screaming pain. Opioids will always win over will power.

Nobody will take care of you. Friends are busy. Family is tired. You are alone. You’ll skip meals because you are too sick to get out of bed and make something. You will go a week without bathing because you cannot get out of bed. Eventually you’ll swallow your pride and ask for help- and nobody will be there to give it to you.

It affects everything. Your diet will be affected. The clothes you wear will change. The type of furniture you have will change. The books you read, the music you listen to, and the company you keep. Nothing is the same, nothing is untouched.

You have to fight like hell. You’ll fight tooth and nail for the care you need. You’ll fight your insurance company. You’ll fight the piercing eyes of strangers. You’ll fight your own body. You’ll fight for your life. You’ll fight with your family and friends.  Everything is a fight. Survival itself is a constant thought.

People don’t want to hear about it. You’ll know that you’re constantly complaining. People will call it self pity, but it doesn’t matter. You have to get it out. You have to tell somebody- anybody- about what you’re going through. And eventually, you’ll find somebody who listens. Hold on to them.

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Just because you can’t see it, doesn’t mean it’s not there #invisibleillness #chronicillness #autoimmune #livewell #bekind #arthritis #fibromyalgia #scoliosis #lupus #crohns #uc #migraines #ms #mediswarm #spoonie #sick