Living with a disease ‘almost’ in remission

01 Jun

This is not a sad post. It just is what it is. Having a rare disease is like this. Rashes have slowly disappeared , strength is coming back,, I’m getting out more and doing more , carefully. People see a happy, joyful and cheerful person. They have no idea how much energy it takes. A constant weigh scale of what I want to do and what my body will allow me to do. Choices I am constantly weighing. This is why I decline many invitations. My energy makes me parcel out carefully my energy for daily tasks or risk a terrifying flare, extreme pain and many medications that make me sick along with many emergency room visits to stay alive. But still, this is not a sad post, life is beautiful I have so much love and I stay joyful, happy and cheerful. So extremely grateful to be alive every single day 🙏🏼❤️

Stay healthy my friends.



Posted by on June 1, 2019 in Daily Update


2 responses to “Living with a disease ‘almost’ in remission

  1. Patty

    June 2, 2019 at 11:04 pm

    Dear Claudine- I am so thankful for your posts and your honesty. I went back and read a previous post of yours, too. Your journey is going forward but I know not at the pace you want. I wish there were words to make it all better for you. This disease hangs over us, even when not flaring, as a dark dragon that can appear out of no where–as you know. I have been doing well. My numbers have been normal but creeping up. My last check up was good with better numbers. I get the warnings though–the little hacking cough; the joint aches in the same joints that were so inflamed one time; the faint rash. I will be traveling out of the country and am terrified. I talked to my rheumy about it; he assured me I would be fine. I hope he’s right; the jet lag scares me.

    Pray that your joyful, happy, cheerful self will be well soon. I know you already do so many anti-inflammatory things for yourself. I drink my tumeric ginger tea even in the summer and I think Sally said, omega 3 high does.

    Bless you

    • stillsdiseaseblog

      June 12, 2019 at 3:51 am

      Dearest Patty, I am glad that you are doing well except for the mild rash on your legs. This makes me sad. Whenever I have a faint rash. I know the rest of the dragon is not far behind. In my mind, it’s like the rest of the dragon is behind the curtain, ready to pounce.

      Please take care when traveling. It’s so exhausting and can make things very bad. I am so cautious that I travel with Medrol in a 10 day ready pack just in case. Please take your meds and be prepared.

      I love the idea of teas. I drink a DeTox tea daily after my cup of beloved coffee! Must have coffee!!

      My husband travels out of the country often for work. Although I would love to join, he knows that my health is most important. I do join him if he stays for more than a week and I can rest often.

      I totally understand your concern. Traveling is not as fun as it used to be.

      I do believe that Omegas have helped me. After I changed my diet to salmon, chicken and mostly vegetables I do feel better. Although, Cheetos still call my name !! Once in a while I do indulge (SHhhhh! Don’t tell!!) However, I try very hard to stick with salmon, chicken, lean meats, whole grains, nonfat dairy and nuts and seeds for snacks.

      I hope your travel is lovely !

      Please stay healthy❤️

      Thank you for being there during my most difficult times.



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