MJ’s Story

Site created on June 8, 2020

Welcome to my CaringBridge website.  I am using it to keep family and friends updated in one place.   I am also using it so that others with vague “ unknown auto immune disease of the CNS” won’t feel so alone.   They will understand that someone else truly “gets “ all the weirdness and angst.  
I also write it for the family and friends of loved ones who have damaged brains 🧠- no matter what the cause or diagnosis ( Especially frontal lobe damage).    I am sure that we are a handful and a puzzle 🧩 on many days.   Why the blog name?  My friends have jokingly called me Barbie for years.  My immune system has decided to attack my brain.  I have progressive damage to bilateral parietal and frontal lobes.  In the spirit of the dark humour we nurses share, I thought the title appropriate. 
 I appreciate your support and words of hope and encouragement.  Feel free to share with anyone you feel this might benefit.    Thank you for visiting.

Newest Update

Journal entry by MJ Griffin

Oh lord.  I am so ready for this year to end.  I am writing this on 12/26/2022 because I finally feel good enough to put thoughts down.  I awoke on 12/13/2022 with this burning pinching “take your breath away pain” on my left flank.  It is felt very much like the diverticulitis pain I have suffered in the past- but it was in the wrong location!   I was going to try to make it to go see one of the nurse practitioners that is a friend of mine ( also a customer) to see what she thought, but just getting dressed and walking around the house caused me to double over. So then I thought:” well maybe I’ll just drive down to the closest walk-in clinic and see someone there”.  But you have to keep in mind. I have no health insurance at this time- so I was very scared about spending the money at this time. (My income is already down several thousand dollars the last few months, because this job is not paying what I was promised). 
I couldn’t even get in the car and drive myself. My son happen to be here so I asked him to drive me down there to the walk-in clinic. Just going over the speed bumps in our apartment complex as slow as he could go still Cosmi excruciating pain at this point in time I was starting to get a little scared..
The doctor at the walk-in clinic was very nice and very thorough. I think I was a nice change for her from all the Covid people she had coming in the process of elimination and exam she diagnosed me with kidney stones. She asked me why I didn’t go to the emergency department and I told her that I knew that it abdominal CT cost about six to $8000 and the oral contrast was $1500 a dose And he would have to take three doses and then I explain to her. I had no health insurance and I could not afford that cost,  unless things became really really bad. So she gave me a shot of Toradol and sent me home with a Toradol anabiotic and told me to go to the emergency department if I wasn’t better in 24 hours , I will tell you that as bad as the physical pain was the mental anguish of suffering yet another setback, this month was very disheartening. That night I woke up as a pain. I’ve got significantly worse than the left side and then resolved,  so I passed stones.
Just two days prior, I had broken down and filled and started taking my prior antidepressants and anti anxiety meds.  It was the best I could do considering I had no health insurance and no extra money laying around to pay $300 for a MD visit (if I could even get in on such short notice).  The meds and walk in visit cost me $500 on my credit card.
On a side note, I recently discovered that it didn’t matter that I was coming to the end of my 90 days waiting period to get insurance, because the insurance my new company carries has no coverage in the states of Florida or Georgia (where all three of the new staff hired live!)… so we are all looking for other jobs.
If I needed another nudge to look for another job, the COVID and kidney stones were it (by the way God, I didn’t need another nudge.  I already knew I was going to have to look elsewhere)
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