Friday, August 19, 2011

Taking Time

It's been a week and a half since my doctor said, "no driving, no work". At that time he optimistically guessed at August 22nd (this coming Monday) as my return-to-work date. Just guessing. I knew in my heart that I wouldn't be ready. Really! I don't even start my new immuno-suppressive therapy until Tuesday! How was I supposed to recover in that amount of time?

So yesterday I calculated how much paid time off I have left, and called my boss. I told her, "Let's try for September 26th". I sighed; she sighed. I love my job and hate feeling like I'm leaving people high and dry, or like I'm abandoning the families I work with. I know it's not life or death, but I'm good at what I do and I provide a valuable service. (I work with kids with disabilities). After we hung up, I felt defeated and guilty.

But today I am feeling relief. I know I am not capable or working right now. I am dizzy, often nauseous, shaky, in pain, weak, and sometimes brain-fogged to the point of not being able to follow a conversation. With this longer time frame, my employer can make plans to change services for my kiddos. With this longer time frame, my meds will (hopefully) have time to start working and I can make the trip to Cleveland Clinic.

Taking time was the right decision. Even so, there is still ambiguity. There is a chance this new medicine won't work. We've already tried three different drugs in as many months. The chances are equally good that I could snap out of this flare within two weeks, or my condition will worsen and I may never work again. That's a big question mark, I know. But the question marks are part and parcel of having a rare, complicated, fluctuating disease.

For now, I need to use my time to relax, heal my body, and calm my mind. Taking time is good.

The Face of Prednisone- It Ain't Pretty
My Spoonie Mantra


  1. Bekah, God bless you always, but expecially during this difficult time. I know how troubling and uncomfortable it all can be. Take care my spoonie friend! Love, Carol G

  2. I'm glad you went ahead & asked for the extra time off - you need it & you're right that it's actually easier on the employer.

    I sure hope your meds kick in & improve your quality of life SOON!

  3. If you are feeling bad you definitely did the right thing, Bekah. You have to take care of "YOU" first before you can be of help to others. I hope all of your meds start to work and you are back to yourself soon. I will keep you in my thoughts and prayers.

  4. Bekah, I'm so sorry to hear that you've been ill. I'm glad to know that you're surrounded by love and support and that you come from a workplace that looks after their employees. I hope the new medication is a success and that you're feeling better soon! Hugs, Jenn


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