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The mighty

Why does it feel like mighty is not as active as it used to be?????? Anyways I’m on 3 antidepressant n antipsychotics plus my autoimmune medicines it’s so exhausting. #anapositive #Bipolar #AdultOnsetStillsDisease #CheckInWithMe

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Life #AdultOnsetStillsDisease

Repeated hospital admissions , IV’s , flare days drain the shit out of me . It’s hard to have years off your life cuz of the illnesses I suffer from. I just hope I can find joy in my life



I can’t believe I found others with
I’ve been living with it for 40 years and have never met anyone else who has it!!


Out of options

Has anyone ever faced the situation when your Rheumatologist looks at you and tells you "We are out options for treatment" I have never been in remission better "yes" but not totally symptom free. I have the most amazing medical team on my side they are all straight shooters nothing held back. In the beginning I told them all I don't want you to hold my hand and tell me it might get better I wanted honesty and the plain truth. So now my question is what's next their answer "We can treat the symptoms and make you comfortable but know you will never get the remission we all have hoped for." Now I cherish the good days and have learned to rest on the bad days not to push myself for anyone and laugh everyday. I have learned that acceptance can set you free I went several years of being mad at the world denying something was wrong and telling myself it will go away. It has not gone away I'm no longer mad at the world and have totally accepted my rare disease. Not really sure why I needed to post this particular post today but maybe it will help someone out there or it may be to help myself. #AdultOnsetStillsDisease #CreakyJoints #TheMighty  


A little me time #CheckInWithMe

Friday I am spending the day doing things I love to do. Having a girls only day, my best friend who gets what I am going through is taking me to lunch at our favorite place. If I feel like it we are going to our bookstore and find some good reads. We have a massage scheduled for later in the afternoon. We are going to come back to my house and order pizza and watch funny movies. Resting up for the all day event, I have dreaded it in the past but have a new outlook and it helps having a best friend who understands being with me. She knows when I have had all I can do, she usually just tells me she is tired too. Why don’t we go home and watch some movies.
#CheckInWithMe #AdultOnsetStillsDisease .


Many are better than none

I joined The Mighty to have a sense of understanding from those who know what I am going through. After I saw a post somewhere else I decided to write the following post as a way to vent some, but also in way to all on The Mighty that live it everyday. #TheMighty

For all of us with an invisible illness. Our illness is not shown, no one can look at you and tell there's anything wrong on the outside. Inside your body is raging a war that no one sees, no one can comprehend and very few have ever felt. Your joints are swollen, stiff and hurting, your muscles contract, your temperature is high, a rash appears and yet no one knows why?? Nothing is spared in the raging war inside you because your organs are involved too. Needle sticks, IV's, lab work, surgeries are all too common for those with a rare invisible illness. It's a new day and you put your best face on, another day of hoping, praying it is better than the day before. Your body is attacking itself and no one knows why, because you have a rare disease that is battled every day with a mix of drugs and treatments they hope will ease your pain and stop the damage this cruel disease is causing. The looks and stares from those who do not understand are soon a normal for you. The whispers you hear, she/he is to young, lose weight, resting a little while will help, you look fine to me, get some exercise are just a few. Do not judge those of us with an invisible illness for things you cannot see, you cannot feel and you do not understand. /Michelle Reed #AdultOnsetStillsDisease

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