Lupus: Full Throttle

Hospital BadgeSometimes this life is hard. I often live in a fog. I suffer from severe headaches and swollen joints that leave me in such excruciating  pain, that it makes everything I do feel like an impossible task. I am sometimes bed ridden and can’t do anything. If it isn’t the joint pain, it’s the headaches. I have gone through five different prescribed medications to rid me of the pain. However, all attempts have been in vain.

Last year was definitely not the best year (2014). My lupus TRIED to kick my butt! Back in March I was out from school and work for two weeks. Thank God for the speedy recovery. However, I was well enough to join my friends and family along with other people dealing with lupus at the Walk to End Lupus NOW event in September. We had the time of our lives as we walked around Parrot Jungle, taking a look at the animals, reading the facts on the paths, and participating in the fun and games. BUT, three months later, in December, the devil tried to take me out again. I had developed pleurisy. Turns out I had pneumonia, and had it for quite a bit of time. Because I had it for so long, it left my right lung infected. But by the grace of God, the high dosage antibiotic my doctor prescribed me was able to clear the infection right up. At my latest appointment, I was cleared. He said both lungs were clear, BUT in order to keep the inflammation from reoccurring, I had to adjust my diet. I had to cut out things that I really love. I can no longer have bleached products (WHEAT only), oh and my best friend Mr. Dairy, I had to cut ties with him as well. Everything has to be done in moderation. I can no longer have my daily yogSuggested Lupus Dieturt at my office desk, or my cheese and wine after a LONG day of work and school. It is definitely going to take a lot of getting used to.

I’m going to need all the prayers and support more than ever now. I had to have a brain MRI done at the end of December and in January, the results for my brain MRI came in. The MRI determined that I have Mild Cerebellar Tonsillar Ectopia. Simply put, in the back of the brain there are tonsils, the tonsils are called cerebellar tonsils, they can and often descend through the base of the skull (foramen magnum). Which in my unfortunate case, they HAVE.

Cerebellar tonsillar ectopia is a term used by radiologists to describe cerebellar tonsils that are “low-lying.” Treatment involves removal of the etiological mass and decompressive craniectomy (NEUROSURGERY), and I am definitely NOT trying to have it get to that point.

So, I have to monitor the progression every three months with a brain MRI and a visit to my Neurologist, but I have awesome friends and family who lend out their hands whenever I am in need of them. The battle is NEVER over, but I have faith that everything will work out for my good.


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