Fix My Funnel, Please...Just Out of My Grasp

Good morning!  I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia. 

In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.

Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine.


At some point I will feel more than 75% all the time. I live with that hope every day. I’ve said it before, but it bears repeating, I’m so sad that I went from a very active triathlete to someone who can barely make it through a 30 minute cardio class.


Within the past three months I’ve had what feels like a chronic UTI. If you’ve ever had one, you know how it really jams up your gears. Also, lethargy increased and I can’t seem to get enough sleep. I have a chronic sore throat, and those occasional kick my ass migraines. The real cruel twist of nature is the feeling of shin splints in both legs when I lie down.

F’in really?

I only wish I could run again to get shin splints

Oh, the other minor, but, oh so important to me detail, I’ve gained 30 pounds in the past two years.

I’ve gained 30 pounds in the past two years, and I’m not on steroids. I don’t need them. I only occasionally take Lodine or Naproxen.

I decided to make an appointment with a vascular doctor. I thought maybe a hernia was to blame for the full time abdominal pain, pressure, bloating, and discomfort. The doc was great, listened to me, and ordered a CT scan with IV contrast for my full abdominal and pelvic area.

Well, come to find out there is no hernia…good news. But, I have something called an external renal pelvis and it’s distended.

Imagine a little funnel emptying from the kidney into the little ureter that connects to the bladder. Usually the little funnel (renal pelvis) is located within the kidney. Mine has taken up residence outside the kidney (in and of itself still normal) but, it’s distended and now, I have this chronic feeling of UTI, with no accompanying infection.

So, come on now, you gotta be able to fix that.

Wish me luck today, I have the appointment with the urologist the vascular doc referred me to. I want at least one thing repaired instead of treating the symptoms.

Hugs and yes, I’m still very grateful for every breath and every smile. I will march on.



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