We live for the time we have, perfect or imperfect.

Morning Coffee Doodle: Kick your heels up! You are alive to experience it all.

Today at the grocery store the cashier could tell I was very tired. I had just worked with my horses, I bathed them and walked the miniature horse (who has special needs) in the blasted Arizona heat. As I watched the elderly male cashier ring up my groceries, I sighed in exhaustion of the day. (Mind you, it is now the 2nd month of zero pain in 5 years!!) Tired yes, but very grateful. He finished ringing up my bill for the groceries and said “Man, it sucks getting old! We are both tired!”

My 1st response, in my head, was “I’m not THAT old! Lol!” And then, my verbal response was, “well, we should be grateful we have the chance to age and get old. Many people don’t get this chance and would give their limb to live another year.” He stopped, stared at me. I didn’t breathe. He tore the receipt from the register and handed it to me. Then he said “thank you for opening my eyes today. Yes, it’s a gift to get older. Thank you for reminding me.”

I said, “you’re welcome” and left the store. How odd that I hear this so often lately. And each time, I feel a ting of anger or disappointment. I have lived years, a decade in excruciating pain, flares and broken bones and burning eye sockets like acid on my eyes from the shingles caused by a weakened immune system from steroids and meds and I always felt that at least I have another day where I might and hopefully feel a bit of relief from pain.

Nobody really understands the extreme pain of needing to get up at night and walk to the bathroom with broken bones and going through a flare of chills and fevers and drenched wet hair from breaking fevers and joint pain so bad you can’t lift your arms.

Only the ones who live with the dragon 15 steps behind them at all times can appreciate the days of no pain, no teeth chattering, no rash, no major organ shutting down and not knowing if this flare will attack your heart and there will be no stopping the dragons last attempt to take you out.

So, when you hear anybody say how “awful it is to grow old”, just tell them there are millions of people who would have loved to have the chance to live another year and grow old and I am sure, so would their loved ones who miss them.

Be grateful. Stop whining. Please be appreciative of this beautiful time we have.

Stay healthy my friends.

Claudine

4 comments

  1. Hi, Claudine! Thanks for all the wealth of info. I’m thankful for your blog! I have not been officially diagnosed, but recently my friend’s niece who’s a doctor suggested I might have AOSD after I described my symptoms. I went to see a Rheumatologist in June after a pretty bad flare in May, and after running all the tests, everything came back negative, so she said she had no clue what I had. I’ve had symptoms of AOSD for at least 10 years now, but the flares are getting worse. What kind of doctor should I try to find to finally get a diagnosis? It’s frustrating. And I worry that another flare will come and I won’t have any meds to help me through it. Thanks!

    1. Dear Ana, I am so sorry you are suffering. I am curious about your lab results. Since AOSD does not have an actual lab result that pinpoints the disease, it is a very difficult disease to diagnose. AOSD is diagnosed by exclusion of all other diseases and then an MD will determine if you have the criteria that meets the specifications for stills disease (AOSD). I would ask for a different MD to review your case. If you do have the list of criteria that meets the diagnosis for AOSD, that your have found doing your own research, (as I had do to back in 2008. I had to diagnosis myself and beg for a referral to a Rheumatologist, because the MDs in the hospital had no clue what I had), you can help your case move forward towards diagnosis. Please try to find another MD. This may mean that you go to an internist with printouts of your labs, all of your symptoms written down, photos of your rash, location of swollen lymph nodes, etc etc. Please dont give up. Keep me posted. Sending hugs and positive energy to you.

      1. Thanks for the advise and suggestions. I will definitely try to find another doctor. Do I have to have a flare in order for high Ferritin levels, etc. to show? Or will those levels show high even during remission? Appreciate your help!

      2. No, I wouldn’t think so. I understand some people don’t have an extremely high ferritin, but do have all of the other classic symptoms. But, stills is very hard to diagnose and this can baffle doctors. If you have rash, high fevers, joint pain, etc it could also be other diseases that have these symptoms. Try and find an MD that will sit down and listen to you. Keep photos of your rash and the time you flare. AOSD usually has at least one flare at a certain time of day. Although some people have fever spikes twice a day. Loss of appetite, sore throat, headaches during a flare are very common. I am hoping you find a caring doctor to help you with your suffering. Keep me posted 🙏🏻

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