Regroup-a-de-doop

My entrance into chronic illness has been like falling through a big hole in the floor. I am immensely grateful for a vibrant community of bloggers, writers and brave ones who share their stories and pave the way. Where would we be without these brave souls?

I am attempting to join in Sheryl Chan’s May link-up this month. She has been such a blessing to me in navigating my emotions and feelings in her sharing.

She has a blog, and posts frequently on Twitter, and is a voice for many of us who have been squelched, or are too weary to offer words.

Regrouping.

I was feeling good about my first visit to the rheumatologist. I had heard this man had a bedside manner akin to a rabid dog, and thought… you know? If he comes in and tells me to go take up running and take vitamin B6- I’m just going to sit there and cry.

I was surprised when he came in the room, in a rush–diagnosing me.

“Malar rash. All fibro points.” He rapid-fire asked me questions, looked at my bloodwork. Read over 2 hours of history painstakingly taken from his research assistant.

“Chronic Fatigue. Fibromyalgia. Most probable Lupus. Take these meds.”

I sat dumbfounded. He knew I had been through a grueling cancer battle. I can handle pain. But all this had taken a toll.

His final words as he left the room: “you are trying to be stronger than what you are.”

Yep. I cried.

While I felt validated… it was also frightening.

What??? I have these diseases? What do I do? What do I expect? Can I change it?

While his research assistant answered some of these questions, it was still so ambiguous. By my second appointment, I was unsure of so much.

“Does not have SLE(systemic lupus erythamatosis) at moment, but cannot tell when it will attack organs.”

What??? The non-SLE??

He was not interested that my malar rash was a bit better. (From the meds you put me on, dude.) He was not interested that I felt a bit better. He actually was condescending that I was trying to carefully watch my diet for foods that make inflammation worse.

He literally told me it did not matter what I ate. “Disease is disease”.

He argued with me over his desire to give me MANY steroid injections in my joints. I declined.

“Your bloodwork is good. Come back in September.” He said no more. Did not even look at me.

I felt dismissed. Not heard.

So yeah.

Regrouping. From this treatment from a specialist. From his callous demeanor.

Regrouping from all this autoimmune junk after aggressive cancer.

Finding new normals. Seeking a tribe who understands. Remodeling how I overextended for my loved ones and in my life until there was nothing left of me. Trudging through the emotional baggage of trying to take care of myself when I have not for so long.

Finding my new life.

I am just at the beginning.

Some days I’m up for it, other days, I need to sleep it off.

Onward.