Autoimmune Disease

I’m Here for the Morphine.

The following was a post that I shared on Facebook, followed by a link and opinion of an ignorant woman with my response:

If you work in the medical field, nurse, doctor, tech, speech pathologist, transporter, practitioner.. etc… you should read this. It’s a read, but anyone in any field of practice that would be considered helping others can and will learn so much if you will soak in what this article truly says.This is my life. I live with chronic pain 24/7/365. I know there are more people who come in for the drugs than for the help, but if you see me in the doctors office or ER, it’s because I’ve been unsuccessful relieving the pain in the hours upon hours that have lead up to this. I’m not a drug seeker. “I’m quite possibly one of the strongest people you have ever met… and yes, I’m here for the morphine.”

💜

#chronicpain #fibromyalgia #sjögrenssymdrome #themighty #youmakethedifference

Link :👇🏼⬇️👇🏼⬇️👇🏼⬇️👇🏼⬇️👇🏼⬇️👇🏼⬇️👇🏼

To Anyone Working in the Medical Field Who Comes Across a Chronic Pain Patient
Link:👆🏼⬆️👆🏼⬆️👆🏼⬆️👆🏼⬆️👆🏼⬆️👆🏼⬆️👆🏼
*************End Facebook Post***************

  • Facebook Comment:

Ignorant Woman:
“homeopathic way…….start with Lavender.”




My response:

“If I’m at this level in my journey with these multiple illnesses, if I’m willing to take 13 different medications multiple times every day that have serious serious side effects and pour acid into my eyes twice a day so that my eyes are no longer dry, if I’m willing to go through the trouble of driving across town to pick up my meds and fight with insurance companies because my doctor didn’t write the script just oh so perfectly, if I’m UNABLE and DISABLED to and from working a full time job or even a part time job because it’s NOT EVEN A POSSIBILITY for me to be able to guarantee a commitment, if I’m willing to ASK my husband (who has done nothing but fight FOR me) to work and move across town to get to where my breathable air is SAFER for my body, if I’m willing to lose countless friends and support from family, if I’m willing to forgive those who cannot possibly understand since they have absolutely no clue-and I am truly glad that most can say they never will understand for I wouldn’t wish this on my worst enemy- willing to forgive them for offering options of which they believe will work, of which they just assume I’ve never tried since I’m still having symptoms… I AM willing, I DO all of the above on the daily basis, and I’m finally standing up on this issue in my life because all autoimmune patients say something at some point. I’ve ignored these comments until now. No thank you to your plexus and thrive. No thank you to your organic and antibiotic free vitamins, plants, topicals, aromas, meditation, sales of pyramid schemes and or any of the other things that I have missed. I do not mean this in any type of rude way, although that is the only way this may come across. I’ve been fighting these words back for what seems like years… no thank you. And please don’t offer. Because if you feel the need to offer, you obviously are not aware of the non limitations, adaptability, prolonging, lifetime long, heaviness, and difficulty of my disease. My doctor still has to do research-and that’s NOT because I need to find a different doctor, but because these diseases never stop changing according to each treatment. If you feel the need to offer a “plan” in which you believe will work – just don’t. I’ve been there, I’ve tried that, and I’m far passed what a person who does not practice medicine and specialize in Sjögren’s and fibromyalgia could come up with. It’s a never ending road and a never ending battle. The thought that comes to me after reading of “all who have been healed” through these natural medicines is “good for them, I wish I could be too”, but also a comment that I will not say. No thank you. 


I post these articles for educational purposes. I post them for my husband and family to read so they can see that I’m not the only one, that these bizarre and ridiculous symptoms fall in others diagnosed with chronic pain, I post these to offer a different view point in those who are interested, and I post these also for people to realize that natural medicine does not work for everyone.
I realize this is an unneeded response, I realize that I should be willing and expecting responses like “try lavender” if I’m posting things publicly.. but I also realize that if you post your opinion, I’m fair, willing, and rightful to post my experience right back.


If you have found your treatment to work for you, I am so glad and thankful that your symptoms are better and managed.

But everyone is different. 


And not everyone responds to each treatment the same. 

#nothankyou #trieditall #onapath #fibromyalgia #sjögrenssyndrome #chronicpain”


🎤drop.

I live my days 6 hour timer to 6 hour timer. I live my 3 months at a time draining our bank account just to manage my symptoms. I live my world inside with 2 doctor prescribed and designated emotional support dogs: one for emotional needs and the other for pain. I live my days with an air purifier and my nights with a humidifier at my bedside. I’ve learned quite well how to balance carrying my heating pad, water bottle, piedialyte, tramadol, klonopin, phone, and iPad room to room. It’s a guessing game for home much is too much and how much activity is ok. I’m paying severely for moving to a home, just for the possibility and hopes that breathing in cleaner air would rejuvenate my body and make me a new person. I live my seconds full of guilt. My husband works his ass off. (Excuse the language but I’m just so angry!) All he wants is for me to feel better. And I worry…. but I won’t put that thought out so that it won’t cross my mind. I live my life trying to get better. Thinking to get better. Moving to get better. Sleeping to get better. Resting to get better. On a heating pad to get better. With special PJ’s to get better (not irritable for my skin).

Lady.. you have no idea how much you have no idea.

And that’s the world we live in. 

Seriously so insulting. 😠

✌🏼&💜,

Bailey

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