Hypochondriac

There have been many times that I have been called a hypochondriac.  Due to my incessant need to know what was wrong with me.  During the time period from approximately 2010-2016.  I struggled knowing the names of the multiple diagnosis I would come to have and during those times I was injured and  diagnosed with even more.  One of the problems with these diagnosis are the rarity of them.  Arachnoiditis is  recognized by the National Organization of Rare Disorders.  The link is as follows: NORD-Arachnoiditis is on the list of rare diseases.

It started in 2010 when I began having "back pain", I started having treatments from my sister who is a Chiropractor.  When she felt it was beyond her scope of practice she sent me to the Core Institute to be evaluated by an Orthopedic Surgeon.  I had an MRI and xrays and was told they did not see anything "abnormal".  By this time it was 2011, I had been on pain medication for over a year, now caring for my mom who had Parkinsons and Dementia.  I had lost 60 pounds and was getting ready to marry my current husband.  Some on my thoughts were the possibility that the weight loss had somehow affected my spine.  I had recently changed  primary care physicians, to Dr Patrick Roscetti, who I still see to this day in 2018.  He was very supportive and trying to help me get answers.He encouraged me to seek a second opinion.   The second Orthopedic knew the answer right away, sent me for an MRI, although the radiologist did not read the imaging correctly, the Orthopedic Surgeon had to call him to re-read it which was holding up a much needed surgery even longer.  I had a couple SI joint injections in the meantime.  Limping around, caring for my mom, I guess you could call me a hypochondriac.  I had the first surgery in August 2011, a Laminectomy (excision of the transverse process). I was back to work within 10 days, working two jobs, over 50 hours a week.  Such the hypochondriac I am.
Fast Forward to two years to the date later... Deja Vu, symptoms are the exact same, bone pain, spine swelling, I see Dr Roscetti to express my concerns of "that bone growing back"  I tell my husband, he rolls his eyes, I tell my dad, I know what he is thinking (don't be a hypochondriac).  I share my aches and pains with my friends, I know some of them are thinking "here she goes again complaining".  Within a month or so, we find out the bone has grown back again, am I a hypochondriac?  In severe pain, I hop on a plane for a turn around trip to Michigan say my goodbyes to my Uncle who is passing away, I return home to throw a 40th birthday party for my husband at our home. I stand in the kitchen to prepare a well thought out menu. As I am standing I can feel the inflammation increasing in my spine.  It hurts, I fight back tears, I do not want to be called a Hypochondriac.  Its inevitable...
I have the surgery Sept 11, 2013, I can not feel my legs when I wake up, yet they are painful, I can not walk well, I am in severe pain, confused, bladder and bowel has shut down. Read up on it,  doesn't sound like hypochondria to me.  My imaging says Cauda Equina nerve roots are clumped.  Sounds like Cauda Equina Syndrome.
From that day forward and to this present day, I have had to question myself due to judgments of others.  I have heard words whispered and murmured.  The occasional you are such a hypochondriac, followed by "just kidding".   I have searched and I mean searched for a cure for my illness.  I have searched for pain control. I have endured some of the most questionable medical appointments that left me wondering why we even have Physicians.  This does not make me a hypochondriac.  It does not make me a hypochondriac to have an ongoing, chronic, and incurable medical condition that causes me to need constant medical care. There were so many times I would lay in pain and go off to the ER knowing something wasn't right.  They would do the standard imaging, blood tests, sometimes admit me for IV steroids.  Most of the time, the answer was the same, follow up with what I was already doing outpatient.   I know when there isn't something right with my body, and if I feel I need to seek medical care, I will look past every single one of everyone's name calling and get myself care.  I have a condition that could paralyze me any day.  I have a congenital abnomality that has fused my spine 3 times, for an unknown reason, and because of that, I suffered trauma at the hands of a trusted Physician.  One I will never heal from.  This does not make me a hypochondriac.
During 2016 I decided to seek Psychiatric care because I was done questioning myself.  This kind Psychiatrist immediately supported me and apologized for those that had ever called me a "hypochondriac" and those that had made me feel ashamed of something I could not control.  She explained that sometimes with medical conditions there are no answers, cures, and sometimes there are not the answers that we would like to hear.   This is exactly what I needed to hear from her.   I was not getting the answers from the Physicians that I WANTED to hear and there was no cure.  Could be a reason I kept trying.  Another reason was fear.  I was in constant fear. When my body was in such severe pain I knew something wasn't right.  In the summer of 2016, I began to experience some of the same symptoms again, I knew the bone growth was returning.  I began with the cycle of Dr appointments...again.  Sure enough the articulation of L5 with the sacrum and ilieum had returned for the 3rd time. Several imaging appointments later,  I met with the Barrows Neurosurgeon in Nov 2016, it took him 7 months to decide to do surgery which took place in August of 2017.  In the meantime, I focused on the Pudendal Neuralgia for the Spastic Pelvic Floor,  I underwent 2 botox surgeries (January and May 2017) and participated in pelvic floor therapy while awaiting the 3rd spine surgery for this condition.   Sound like Hypochondria?

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