This Too Shall Pass, but the pain is so bad until it does :-(

I have been procrastinating. It’s a strange feeling of “if I don’t go to the web page, maybe I can post something more cheerful. I am sorry I waited. Things has been awful. But, I’m glad to be alive, so I guess this balances things out. My flare on 1/28/19 was a doozy.

What a nightmare of a flare. The symptoms came on like wildfire. The telltale cough. The feeling of freezing, although everyone else is warm, the evening arrives and the drenching sweats and chattering teeth so hard I feel as if they will shatter. The jaw pain from the spastic muscles of chattering.

The emergency room visit and IVs and the explaining and explaining, blah blah blah. They called my specialist and we started the labs and Medrol.

But why is the human mind like this ? Why do we think if we ignore it, it will go away. It’s a strange phenomenon.

It’s been 2 months. I have flared twice during this time.

One week when I just got sick of the Medrol and I said “SCREW THIS!!” In more colorful words.

I was fine for 24 hours and then……WHAMMO‼️‼️‼️‼️‼️I had never had a flare kick me in the ass so hard !

My fever went sky high -(102) I was vomiting repeatedly and had chills and chattering teeth and joint pain. And the strange thing, my eyes were leaking yellow pus and were so swollen shut I couldn’t see. I was terrified I was going to go blind. The other additional symptom was a raised, very red and pointed rash appears. NOT the typical rash. It was firm rash, very isolated to hips, thighs and abdomen. It went away in 2 weeks but it was odd.

I started the medrol and the MTX again and have not had a huge repeat.

Although, I cough when I get very tired and I feel like I’m going to collapse and cry from fatigue. The intensity of the fatigue is whole body pain. I drag my feet. I cry.

It sucks, but I’m alive. And if you’re reading this, then you are alive too.

And I am so glad you are here with me.

Well, time for the methotrexate injection. Live on. Love on.

Stay healthy my friends,


Daily Update

stillsdiseaseblog View All →

I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.

2 Comments Leave a comment

  1. Hi Claudia,
    Coming into your blog to check for updates but did not expect to read this instead. Sorry to know the ‘dragon’ is visiting you after such a long absent. Relapsed is the word we wish we will not hear again. I feel you. The entire episode is not only painful, but both physically and mentally challenging for all to go thru. Stay strong my friend!
    I am ‘clear’ of the disease for the movement but occasionally find myself in a panic state when feel itchy on my arms or legs and started to question can it be rashes popping up? (Usually it turned out to be false alarm, mosquito’s bite). I am off from all medication since Nov2018. My last checkup was on March 2019, everything is good except putting on too much weight. Next checkup will be Sept 2019.
    If you still having the rashes and joint pain, may I suggest you to take high dosage of Omega3 daily (1800-2000mg of EPA) and cut as much sugary intake as possible from your diet. Most Omega3 comes with EPA and DHA, but we need high EPA to fight the inflammation. These help me during my relapse. Even now, I still continue the EPA intake, but reduce it to 650mg daily.
    Take care and stay strong.

    • I am so happy you are doing well and you are healthy. This made my day. Anytime I can hear of good health I cheer! I will try the Omega 3. I have weaned from the steroids and now only on a very tiny amount of methotrexate. I am feeling better. The good thing is I don’t like sugar. I never have. Strange. I know. Salty is my favorite when I fee a small craving. I am taking a high B complex and eating high amounts of green vegetables. I was never a dark green vegetable lover, but, hey, whatever it takes. I hope to be off the injections in a couple months. They suck!!! I also have tried gentle yoga and energy conservation. This keeps all stress low, which seems to be be my bodies worst enemy.

      I will post more often. I sometimes feel if I don’t post, all is well, which isn’t at all. I need my friends. You are all very dear to me. You all understand. And this is crucial to healing.

      Take care my friend

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