Jill's Life Conquering AdhesiveArachnoiditis

I am known, by many, as indestructible. I would give you the shirt off of my back- generous, no matter what it takes. My four humans are always taken care of- 5 star mother. 19 years married to one hell of a match- patient and persistent. 

*One's perception of another, reflects their own perception of themselves.*

...with tears in his eyes, he tried to compose himself, "I don't even know how to tell you this. I don't even see this in my elderly patients.."

On February 4, 2019: I was awaiting the results of my MRI. The nurse did her triage routine and I paced, with my cane, waiting for my doctor. The infamous knock came. All doctors sound the same. He entered the room and made absolutely no eye contact. I remember this moment, vividly. I suppose you tend to remember when your whole world shatters from a diagnosis. This doctor had been my primary care, from the initial conversation of introduction, right up until we left Florida (March 2020). He stood there, in front of me, reading my MRI report to himself, tears forming in his eyes. He removed his glasses, and there was a brief pause. He then began, with tears in his eyes, and tried to compose himself, "I don't even know how to tell you this. I don't even see this in my elderly patients." I repositioned myself with my cane. He asked me if I wanted help taking a seat and I politely declined. Anxiety and worry had set in and I didn't know what to think or do. The words that he was speaking stung. I kept only hearing bits and pieces, as my heart started to race. It was almost like i was in and out of consciousness. Wait. I'm only 33. He must be reading an elderly patient's chart. Maybe I should stop him. Why is he crying? The thoughts and noise would not stop. I left the office silent, with a handful of prescriptions and several referrals. Little did I know this was the very beginning of an extremely dark, sometimes impossible, challenging time. No one could have possibly prepared me, for this. Not even my own self.

The paperwork and appointments started, immediately. I felt like a cracked egg, rolling around and leaving my contents everywhere. I was. It had begun to be the most vulnerable time of my life. Ten years of gradually getting stuck in certain positions, straightening and stretching never touched. Ten whole years of wondering why being such a young mother was physically draining me with debilitating pain. During those ten years, I was told it was muscle pain and sent home. The endless nights of crying, while taking care of my newborns, in excruciating pain. Every morning, no matter how I felt, my little humans depended on me. It didn't matter if I was up all night and my spine was frozen stiff... I am mom! You tend to push off any and all concerns, while adapting to your growing family. After all, birth is beautiful and empowering! Let's not forget all four of these miracles were born naturally, with no medication. I hid it well, as I do most unbearable, negative things. 

...It's active labor, for goodness sakes!

Reading this far, I need everyone to please educate themselves on epidurals, of any sort. My AA is caused by the catheter of an epidural. I never even received the medication. Every parent who has ever taken or read parenting classes knows there's a cut off time, during labor, for epidurals. Apparently, the anesthesiologist that I was so gracefully blessed with (Exeter hospital) made up his own rules and was administering the epidural anyways! I had just entered active labor. This is the exact time, during every birth, I give up and start with the, "I cannot do this. I cannot do this." Well, duh! It's active labor, for goodness sakes! As he entered the catheter, into my spinal canal, it was time to push! No way.... maybe, just maybe, this is exactly why they have cut off times? I leaned back to push and there the needle went, tearing as it went deeper into my spinal canal. The headache that immediately emerged was something I cannot explain. There was pressure and extreme sharp stabbing pains that traveled around my entire skull, into my neck and down my spine. Breathing through pain that excruciating is difficult enough... don't forget, this is all happening as I am pushing. Every single symptom was dismissed as the aftermath of childbirth. It didn't make sense. I've had 2 other children, both natural and no medication. "Keep taking motrin."

Can I sue? Nope. There's a 3 year statute of limitations, from the date of diagnosis. 

...A career I worked and trained so hard for was now a thing of the past.

I am now permanently disabled. This means for the rest of my entire life, there is no getting better. I was not only diagnosed with a monster that will progress into paralysis... but, I was taken from a career. Our main income was and is now nonexistent. Over the past 3 years, trying to rebuild our lives has almost become impossible. My disease has now spread into my hips and up my spine. Rob is now home, with me, not only as my husband and life partner... but, my caregiver. I will spare you the paragraph of how that, in itself, makes me feel. I have applied to any and all assistance programs I am able to. I qualify for section 8, as well as subsidized housing... but, the list is several years long.

It just adds to the alone feeling, when you are this sick. 

We are facing a no fault eviction for 11/01/2022. Our landlord has tried this before but, this time he involved the court. This has been our home, for the past 2 years! Again, absolutely nothing I could have done to prevent this. He is well aware of our current situation and simply doesn't care. It just adds to the alone feeling, when you are this sick. You feel completely invisible. I never could have chosen this. Ever. But, i cannot help but take blame. Set back after set back and I cannot help but think of what life was like, before this monster. I cannot accept the fact we had two strong incomes paving the way to our goals! I cannot help but think just how much of a burden I've become and will continue to be. I would never choose this, especially with the four sets of eyeballs that are watching intently. But, I can choose positivity. I am choosing to reach out to any and all resources. I am starting to accept that I need help and cannot do everything on my own anymore. I am asking for help as a roof over our heads is imperative. Storing our necessities is another cost, rapidly approaching. I state necessities, as the less room needed the cheaper. I'm hanging onto the word temporarily as it takes time to process paperwork for section 8 and subsidized housing.

The plan, as of now, is to raise enough money to stay in a hotel, while we wait for housing/paperwork to be processed.

This Halloween, we will be trying our hardest to keep things normal for our two youngest. Thankfully, I was able to score both of their costumes for $20! There's a positive ✨️ 

There will be receipts provided, when any and all money is used. I believe in speaking truth and complete transparency, especially when someone blesses you.

*When you have no one, the smallest act of kindness changes your entire world and your outlook. That's a hope dealer.*