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Looking back

I ran my hand across my neck and felt the scar from the lymph node biopsy performed in 2006. I started thinking how far I’d come in these past 13 years.

In 1996, I won the battle with my weight and was in great shape…except for some strange symptoms. I started developing allergies to certain foods and an unconquerable fatigue would haunt me. Doctors told me it was nothing, but my instinct was strong. This isn’t normal.

I went to doctor after doctor. One told me that I was too young to have something wrong with me. That she practiced geriatric medicine and saw people with real problems, so she wasn’t going to order any tests. Ouch. I left there feeling embarrassed and helpless.

I wish she would have showed concern because my health eventually took a nose-dive. I started losing weight without exercising (does NOT happen for me) and experiencing sharp pains after eating. I was told it was GERD even after explaining the pain was in my side. Ten years passed and I was tired of hearing nothing was wrong. I resolved to die a crazy death and hoped my Mom could sue for damages. At least something good would come of it, right?

Early in 2006 on a routine visit for a totally unrelated issue, a doctor noticed my lab work was strange. He urged me to revisit my PCP with his findings and that’s when it hit the fan. Initially the diagnosis was Non-Hodgkin’s Lymphoma. The biopsy came back negative, but my doctor was so convinced that she ordered another! I was not happy. (I have some funny stories about the procedures if you want to ask me later.)

I was also losing blood so the next ‘diagnosis’ was leukemia. I had a bone marrow biopsy (yes, they are painful) that came back negative but there was bone marrow damage. Very strange indeed. The hematologist presented my case at a medical conference to see if anyone had seen anything like that before. The answer was no. Meanwhile, I was still losing blood somehow, so the doctors ordered every test and scan possible. Modesty was out the door. Strangers saw all of my innards and ‘out-ards’.

I was still working at the time trying to hide bad days from coworkers. I reluctantly went on leave, because I needed the distraction. I had to seriously face my mortality and think about getting my affairs in order.

After six months of testing, the final diagnosis was lupus and it brought some friends (several other medical conditions.) I was excited to finally have proof I wasn’t a hypochondriac (you don’t look sick…), but that was just the beginning. From 2006 to last year, I’ve had several surgeries and procedures to correct the damage caused by my immune system. I have to manage life, work and illness with precision. I plan on staying on this side of the dirt as long as I can!

Why am I sharing? Because I have to remind myself of my strength. I'm still here like the little engine that could. When you have a chronic illness, it’s easy to feel like you’re behind your peers. You can’t do as much as you used to. Your social and family life changes. Medical bills and unpaid days off take a toll on your finances. You wonder if you will get to a point where you can’t work anymore.

I fight daily to keep a positive outlook. I use mindfulness to stay present and stave off the anxiety from trying to predict the future. I find others who can relate to give and receive encouragement. A good support network is crucial.

Writing is also therapeutic as it provides an outlet for my thoughts. I hope you find this blog encouraging, informative and uplifting. Thank you for accepting the invitation into my world.


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