HELP END ANNA’S ACRONYM
To say this post is out of my comfort zone is an understatement. I rarely ask for help of any kind and don’t like discussing my health issues. The desire to regain my health and quality of life drastically outweighs my privacy concerns. The saying, “Energy flows where attention goes” is true. I refuse to give my illnesses anymore power over my life. It has already taken too much.
My story began almost 10 years ago with some unusual symptoms. As the symptoms expanded, I went to my local doctor. He listened and replied, “That’s interesting” then referred me to a neurologist. That doctor listened, tested my reflexes and had me follow his finger with my eyes. No problem was noted by him, but did say my symptoms were interesting. More unusual symptoms developed which lead to another neurologist and another. Why didn’t anyone understand what was going on? The same exams and tests were repeated and everyone agreed that I was “interesting.” I finally saw a neurologist that had a new idea. He suspected I could have a form of Multiple Sclerosis (MS) (my first experience with a medical acronym) and ordered a head scan. The good news was I did not have MS. I breathed a sigh of relief only to have my next breath taken away. The doctor followed that statement with, “however, there is a mass on your right front lobe (RFL).” This brain tumor was identified as a meningioma (MGM) which began my medical dictionary of acronyms. The plan was to watch and wait (WW) to see how it would behave. The doctor explained this was an “accidental find” and not causing my other symptoms. I thought a brain tumor was awful, but I didn’t know the worst was yet to come. My next symptom came suddenly with excruciating facial pain. Fast forward through more neurologists and my diagnoses was Trigeminal Neuralgia (TN). I quickly understood how this got the nickname suicide syndrome. Surely TN was related to my neurological symptoms or my brain tumor. No, TN was a separate issue. I went to the Mayo Clinic in AZ to see about a surgical option to move the blood vessel that was pressing on the trigeminal nerve. The Mayo Clinic said I wasn’t a surgical candidate because I had micro vessels. Neurontins were prescribed by the fistful for years to help with pain. Mayo re-scanned my brain tumor and had the same opinion of watch and wait. They also listened to my unusual, growing list of symptoms and I heard it yet again, “that’s interesting.” After 2+ years of dealing with the TN debilitating pain, it left as mysteriously as it began. I’m in remission and pray for it to never return.
I continued to seek out neurologists around the country who were considered the best in their field to find help with my growing list of mysterious neurological symptoms. The same painful tests kept being repeated even though I now had a 3” medical binder I carried with me with previous test results. My brain tumor was still being watched during this time and was for the most part behaving…until 2014. Drastic changes in a short period of time caused my tumor to rapidly grow and my benign / harmless tumor abruptly changed into an aggressive / dangerous threat. I was told to gather my family because in less than 48 hours I would have an emergency craniotomy. Post-surgery, I continue to get scans because it is common to get one or more meningioma(s) within a five year period. From brain trauma some people develop Pseudobulbar Affect (PBA). Unfortunately, PBA is also included in my medical acronym list. My still unidentified neurological symptoms accelerated after my craniotomy.
In 2015 a trip to the Mayo Clinic in Minnesota turned my world upside down. After a week of exhausting all day appointments I finally had my devastating acronym - Primary Lateral Sclerosis (PLS). It’s a cruel, rare and progressive neuromuscular disease that took 7 years to diagnose. No treatment. No cure.
For me, PLS affects every aspect of my life: fine motor, speech, swallow, balance, sleep, walking, painful spasms and intolerance to cold, to name a few. My kids will come running if they hear a loud noise because I frequently fall. I can no longer enjoy my hobbies of cooking, gardening, riding a bike or going for a walk. I also miss dancing, singing along to my favorite songs and even cleaning the house. I miss me. I miss who I was prior to this horrible disease. My kind words or quick wit stay inside my head as my world grows smaller and I become more isolated. My gait resembles the scene out of The Wizard of Oz before the Tinman was given oil. My speech is hard for most people to understand so I rely on hand gestures or writing words out. I even had people try sign language when they thought I was deaf. I am labeled as disabled and have to rely on a walker to get around. I feel self-conscious about the walker and make sure it’s not included in any pictures. Our tripod Pomeranian rescue has a different opinion and enjoys riding in the basket under the seat. This same year a new meningioma (MGM) was discovered. It is small so I’m back on watch and wait (WW).
This year there is one more acronym to add to my medical resume. In 8/2017 I was shocked to be diagnosed with breast cancer - Invasive Ductal Carcinoma (IDC). Since then I’ve had a double mastectomy and will soon begin treatment. My PLS has again taken advantage of a weaken body after surgery to advance itself. My year is ending with wheelchair assessments and applying for funding for speaking devices. Unbeknownst to me, I drew a short straw in life, but not in love. I’ve been married to my high school sweetheart for 31 wonderful years. This journey would not have been possible without his unfailing support and love.
All hope to regain my life lies in expensive experimental treatments which insurance doesn’t cover. The medical world unfortunately has nothing to offer. All money raised through GoFundMe will be used for my PLS expenses. Locally, I have found promising nonconventional centers that offer such treatments and therapies. If I’m able to take this further financially, there are some encouraging centers out of state. In the meantime, I’ll face every day the same way as I have for the last 10 years; to live life above my circumstances and to be more than my disease. One thing I can control is my attitude so I make it a good one. Here’s to a new year with renewed hope, no new acronyms and to be less "interesting."
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