He had shown up on our kitty cams years before he joined our family–usually when the ones who ‘had’ him decided to go out of town and he was left fending for himself. The first time I thought, because of his size, that ‘she’ was a very pregnant kitty and did ‘she’ belong to anyone? That was in 2020. He showed up again over the next few years seeking dinner, or lunch, or breakfast, or all of the above. He had a scraggly meow, buckshot in his left side and took up permanent residency the day we brought our dog, Lila, home from rescue. It was January 27, 2024.
He had been named Jerry by those people up the mountain, but we called him Jerry Garcia as he was so chill and acted like he didn’t have a care in the world. He had an affection for warding off raccoons from his area on the lower back deck, could chase a bear in a moment’s notice or find you the “prettiest” snake on the mountain. He made morning walks with Lila and taught her the importance of boundaries. He loved a good brushing and lived for belly rubs. We were not certain of his age exactly, but felt he was about 13 or 14. We were certain his life would have meaning.
When we made the decision to move to the coast, Jerry was with the other six kitties, with myself and MIL, looking towards a new adventure. The always outside Jerry became inside Jerry and with the exception of the rudeness of two, he fit right in the clowder. I would find him sunning in the dining room, stretched out as “tres” in the Three Amigos of himself, Sailor and Henry. He was a beautifully kind cat–never the troublemaker–but extremely thankful for his surroundings and staff–especially with his Grandma. Jerry took up residency on her lap daily with an ample supply of love and belly rubs.
A few months ago, Jerry was diagnosed with kidney disease. We made sure he had the best care, all of the love in the world and we took the responsibility of giving him sub-Q IVs to ensure his fluid levels were maintained. He didn’t miss a beat during his treatment. The girls at Lillian Vet always greeted him with an astounding “Hello, Jerry Garcia!”, and today they held my hand and hugged me through our last goodbye.
It is a very hard choice of knowing when to let go, but when Jerry was not watching the Alabama game with us on Saturday night and refused dinner, I knew he had declined. We were fighting a horrible game with time and kidney disease–neither which were being forgiving at this point. He wanted to find peace in the back of his Grandma’s closet, but I placed him on her bed. We doubled up on IVs to make sure he stayed hydrated, but his breath was becoming short and I just knew…
I hated that I knew.
I have heard it said that if love could have saved him, he would have lived forever. I know, in my heart, he is curled up in my Momma’s lap with Hannah, Kelty and Cassidy at her feet. Daddy is watching heaven’s ESPN and Jerry looks up to acknowledge there is a game to watch, even though it was not Alabama.
I prayed over him in the minutes before and after Dr. Beth sent him to them. I told him to run free, to finally catch that bear and to know we could not have loved him any more than we did.
For over nine months now I have been in a medical struggle, an abdominal pain that started in January that grew into a type of fatigue I had never known. You see, I am not a sit down kind of girl. My feet hit the floor running and I go like a perpetual two year old until I hit the bed like a brick. Well, that was before…
Now, I struggle to get through a day without pain and even worse, I struggle with the lack of knowledge, compassion and empathy that is left in our medical system. I go back to hearing my Momma say, “the one who graduated first in the class and the one who graduated last, both have M.D. behind their name”. She could not have been more right. We roll the dice when we choose a doctor especially when we are dealing with something they know little about. This has been my case.
That abdominal pain was my first inkling I had something going on so off to the doctor, in this case a nurse practitioner who ordered labs and an ultrasound and a CT. These labs did not dive deep enough and I was told the scans were “negative”. Pain persists, so do I. You find that if you are not advocating for yourself, you will be pushed to the wayside. It is more like a harrowing fight as it began to tire me more than what was rapidly taking over my body.
Doctor Number 2 is a Gastro that explains on Endoscopy might solve the mystery. This is February and I am told September. This is not Canada, so I am awestruck by the timing, but am told The Gulf Coast lacks the amount of doctors to handle the population. I go back to my former town in Georgia where over the following two months I receive an endoscopy and colonoscopy–both negative for everything except an abundance of scar tissue in my abdomen from the seven, yes, seven abdominal surgeries I have endured. We are now in the month of April.
I find out that NP is leaving the town practice and I am on the search for a new doctor. In May, I find an amazing GP in Pensacola. She is thorough, compassionate and not content with doors being left open. She meets me the first time and orders an abundance of bloodwork after our talking. (Yes, talking. She actually took the time to find out who I was and what my history was.) It is now the end of May. The initial abdominal pain has turned into a pain I can only describe as something inside of my rib cage trying to claw out. My days of popping out of bed and going, going, going have turned into going back to bed. I am exhausted.
My blood work comes back wonky, really wonky. I have had enlarged red blood cells for over 23 years along with high MCH. The enlarged cells are associate with what is a condition called macrocytosis where your red blood cells are larger than normal. It shows on a complete blood count and over 100 gets you the prize. Mean corpuscular hemoglobin (MCH) refers to the amount of hemoglobin in the red blood cells. Many times associated with anemia, liver, thyroid–mine has been elevated along with my MCV and has never come back normal although so many doctors in three states have said “NORMAL”. My previous doctor in Charleston was the first to say as I was moving to Alabama “you need to get this checked by a hematologist”.
Flash back to seven years under the care of a hematologist/oncologist in Birmingham who was alarmed by my numbers enough to do a bone marrow biopsy. Negative, but I remained under her care until I moved to Georgia. What was lurking beneath the surface was a high iron level and a ferritin level that began at 30–not my age, the scale. The doctors in both states never addressed it and one was even bold enough to say in print that there was nothing to substantiate the need for more testing. He never followed up on the tests where my iron was thirty points higher than the norm and that my ferritin was now triple the number from Alabama. Add to this a UIBC which showed a high overload of iron in my body. His notes said “at this time I would not further consider workup on this elevated iron level”.
I wish I knew then what I do now…
You see, the new GP ran the tests needed to see what was happening with my iron levels and was not satisfied with that open door as she knew the high iron could start affecting my organs. She ordered an ultrasound and CT, even though I said I had these ran in January. My tests came back with an enlarged liver and made me go back to the original practice in Alabama to find out what happened in six months. I found out I was lied to. That ultrasound was positive which led me to have the original CT reread and they amended it to say there was a single calcified granuloma in the right lobe of the liver. Genetic tests for hereditary hemochromatosis followed. I had all the symptoms, but I did not carry the gene. Now, off to a new hematologist…
Welcome to last of the class…My next two medical encounters had me in a constant state of anxiety. I am NOT an anxious person, but the level of ignorance and the lack of compassion & knowledge really threw me into one hell of a spin. The hematologist said there was zero wrong with me and suggested I go to a gastroenterologist. He was consumed with the previous reports from the Birmingham oncologist about my enlarged red blood cells and refused to talk to me about the iron levels. I was told since I tested negative to the gene, it was impossible for me t have iron overload. I never walked back into his doors again, but I did see the gastro NP who was a nightmare. She was intent on proving herself right and did not want to know my history. She just wanted to be right even though she was way past wrong on so many levels.
The tipping point was when I waited six weeks for a MRI with and without contrast. The results came in that iron was storing in my liver and in my spleen. This is where the scale tipped to not allowing idiots to control my life any longer. I got an emergency appointment with her only to have her NOT discuss the MRI which clearly, along with a high iron level, high saturation, low UIBC and ferritin that has gone from 30 to 230 (High should not be over 100.), but to have her say I now needed a liver biopsy to confirm iron overload. First of all, this is not true nor necessary. When I voiced concern about it being invasive and a bad history of bleeds she spoke is a horrible condescending tone of ” all biopsies are invasive, it uses a NEEDLE!” I bit the inside of my lip because I felt the tears coming.
I am not a crier.
I have cried more in the last nine months than I have in the last ten years.
I walked out knowing I was going to have another fight on my hands so I left a message in the portal to her. It contained all of the questions I had with me at the appointment that she brushed off. She never answered, but instead had the practice patient advocate call me. She was kind and patient which threw me for a loop. I had not experienced this outside of my new GP. She gave the NP’s answers (which were ignorant and incorrect) to my questions. To the question of what can I take for the pain since I cannot take Tylenol (liver) and I cannot take ibuprofen due to it being an NSAID (bleed history) I was told “there is no pain in iron overload”. I guess she missed the fact that people experiencing high levels of iron deal with horrible inflammation and pain. Even worse, the NP’s notes on the visit were not even reflected of the visit. I have come to get used to the lying. Fired her.
Two weeks ago my blood showed my overactive thyroid had gone from .48 to .033. Add now brain fog, confusion and bigger fear to the mix, but my GP was not giving up. She got me into a new hematologist who I will see tomorrow in Pensacola.
I am tired of so many things at this point and although my faith in God is strong, my faith in the medical field is small. No one should have to fight so hard when there is a known issue, but when it is rare ego steps in from the doctor and they would rather brush you off than help find the bottom line issue.
My nights are consumed with finding answers. The book, The Iron Curse by Dr. Christy Sutton, has been a great navigator in what I need to know. I have been blessed to have a great GP, a family member who is a great doctor who reads my labs and tests and an old family friend from childhood who has eased my mind by being my ‘mental cane’ as I approach this appointment tomorrow. He went over my labs with me and the MRI. He is the top doctor in his field, but is states away although his phone call placed him directly next to me. He told me it is possible I have a mutated gene that they have not tested for and no matter what, I need to have ongoing phlebotomies to reduce this overload of iron. Letting this go without the taking of my blood will eventually lead to further organ damage especially my heart and my brain.
I have too much to give to let the last in the class take me down when I have been surrounded personally by the first in the class…
It is seems there is such a stigma attached to anything “Covid”.
If you wear a mask, you are losing your rights or you are doing your part. If you socially distance, you are being a victim of the hype or you are trying to help the spread. If you get tested…well…
“It’s all a conspiracy.”
“My friends got tired of waiting in line and left. Their results came back positive.”
“The numbers are going up because of the numbers of people who are testing.”
You name it and you will get an opinion.
Well, here is mine. I decided to get tested a few weeks ago. Not as much for myself, but for the health of an older family member who lives with me. I called and scheduled an appointment a week and a half out..
Appointment day rolled around and I drove into the next town with my husband where a policeman waited to give me entry based upon the number I was given during my appointment call. I had brought my husband along for the ride and we both looked around at what the scene was in a strange amazement.
It looked like a weird scene out of a bizarre science fiction movie. People outfitted in hazmat gear. A line of cars streaming around a little country church like we were in a funeral procession. It was odd.
They checked my info and we waited for the testing tent where you drove up with an orange cone placed in the front and behind your vehicle. (I still do not know exactly what that was for–again, very odd.)
The persons capturing your specimen then appeared at the driver’s side window. I double checked my info and then was given instructions on how the test would be performed. The lady suggested I grab my steering wheel with my left hand and then use the right to squeeze mu husband’s hand.
Ten seconds, she said.
Longest damn ten seconds I have ever experienced.
I squeezed the steering wheel, cut off my husband’s circulation and my feet came off the floorboard as she scraped up my nose somewhere near my brain.
No fun.
None.
She handed me a tissue and gave me the instructions on how to pull my results online.
And I waited…
I pulled the site up, solely out of curiosity 5 days later.
To my surprise, the results were in:
Human RNA was not detected on initial and repeat analysis. This is likely due to insufficient acquisition of RNA during collection. Reliable results could not be obtained. Recommend recollection.
WHAT? Inconclusive.
Less than an hour later I received a call from someone with the state of Georgia explaining that about 20 percent of what was taken in my county during that day came back as inconclusive. She explained that “not sure if was operator or lab error, but we got a bunch of them back like this. You will have to test again.”
Two days later the county called to explain that my results were inconclusive.
Really? I told them what the state said.
Crickets.
So, they scraped the lower quadrant of my brain and they knew nothing.
I knew I was over it and there was no way I was having this done a second time. I would not go back through that, no, uh uh, nada, not happening…
A month has gone by now and as I type to close this out I wonder how many more people had the same experience? I wonder if they felt the same way I had and walked away with the “I’ll take my chances” attitude? I wonder, quite honestly, what is the real truth?
Truth.
Now, there is a subject I would like to hear more about…
I started a hope chest in my mid twenties–trinkets, books, hand blown ornaments and even crib sheets–all Winnie the Pooh for a nursery and a child I would never hold. I thought I had mourned this years ago. I thought I had excepted the loss. I thought wrong.
Two years ago, on a flight from New York during a delay, I had ample time to catch a movie. I chose Goodbye Christopher Robin. My favorite characters, my happy place turned into my own heart’s reckoning. I sobbed. I cried off every layer of mascara. And this came in just the first ten minutes…
My mind went to a Waverly fabric trunk I purchased at a downtown Charleston estate sale in 1990. It was so beautifully made. I decided it would hold many memories and dreams. The first piece I placed inside was a hand crocheted quilt lovingly made by my Granny Kinne’s hands. Intricate, but tattered, much like my life at the time. Then, one by one, I placed each of the Winnie the Pooh treasures I had collected.
Newly married and looking to start a family we landed at the best fertility doctor we could find. He said we had an antibody between us that did not match. I have no desire to be graphic here, but, on a slide in the lab, my eggs literally ran, and fast! Two years of heartbreaking cycle tracking, garage held meetings based on ovulation where you would stop your work day, send a beeper message and leave emotions in the driveway followed by three rounds of IVF. All failed attempts. All eroding at the marriage. No one ever prepared me for that.
As a child, you dress your doll babies, place them in the stroller and speak to them about how much they are loved and how their daddy loves them, too. You tell them stories and, in your head, you know you will one day be a wonderful Mommy telling your little girl or boy how they had always been there in your heart and in your head. My fairy tale did not work out that way.
No baby.
No marriage.
I would have adopted. He only wanted someone to carry on the family name.
We divorced.
I left with my hope chest.
“How lucky I am to have something that makes saying goodbye so hard….” A.A.Milne
Life moves forward, if you let it. I found my own place, continued working in sales with salons and started dating again. Dates lead to a relationship, the relationship lead to living together, living together lead to a pregnancy.
What???
I remember going back to my infertility doctor because they were a mile away and having an ultrasound and pregnancy test. I remember the shock when Lila told me they felt I was about two months along.
What?? Are you certain??
I just cried.
Looking back, I am not sure if it was because of the joy or because of the loss of my marriage, but I went home and opened the hope chest. Every little piece still tucked away just waiting to meet this new little baby. It was January.
We started looking to buy a home and planning for a future. We visited his family in upstate New York and I remember laughing so hard when he presented me with a ring out of a gumball machine saying “it’s the best of its kind”.
We were moving forward. Life didn’t let us.
Easter Sunday, two months later– I miscarried, in church.
I really did not know how to deal with the grief. I threw myself into my work. I had no real faith circle. I had no answers. I didn’t want to talk. I didn’t want much of anything. I pushed the loss away and watched our relationship disintegrate. I moved the hope chest and my hope into the attic.
I never mourned. I never said goodbye.
How could I?
I never even said hello…
Fast forward to 20 years later, sitting on a Delta flight, watching what I felt would be the a sweet pick-me-up kind of movie to start a long day. What transpired was a muffled wailing of tears. I scared the man next to me so horribly because I could not catch my breath. He rang the flight attendant. I sat in a crumpled mess finally acknowledging the pain, the trunk and how that loss had never gone away.
“You’re braver than you believe and stronger and smarter than you think.” ― A.A. Milne, Winnie-the-Pooh
I sold the trunk some years back and gave away the many pieces with the exception of a choice few. I did not keep them to remind me of the loss, but to remind me of the love I had for that little person who never got to see my world with her.
I imagine the day when I will see her again and maybe, on that day, I will hear her call me “Momma”. I was certainly blessed with the four months when I was…
We have entered the world of Covid. I dare not say “the new norm” as the old one wasn’t so normal either. I just know that somewhere in all of this–the sickness, the current state of mind (and that certainly depends on what side you fall on because we have all learned there are sides) and the ways we are each adapting to what is spinning around us–there is a lesson. There is ALWAYS a lesson.
The whole social distancing thing is not new to me. In fact, I am pretty good at it as when I moved to a small town on acreage I truly found that I enjoyed my time alone. I have always been a baker, but I learned to garden five years ago. I take great delight watching the beauty of the seasons and how easily I can place my own signature on my home land. I love the whimsical pieces in my garden as they take me to a good place in childhood. I am in awe of how throwing the dead heads of zinnias into a plastic bag allows for more magic the following year. I find myself in a world of wonder in an evening sky full of the brightest stars while hundreds of sparkling fairy lights twinkle from my wisteria and Carolina jessamine. I find that when a day can start to feel like it is breaking my soul, there is relief in the garden. Pulling weeds by attaching the names that have produce unwanted and unneeded anxieties is excellent therapy. (You should try it!)
What is new to me is the widespread lack of kindness. I am one who personally feels that our wondrous maker who placed all of those stars and developed every beautiful variety of flower wanted each of us to come through this time in history with having learned something better. Maybe it was how to bake, or sew. Maybe it was to help a neighbor who needed us, but who would never ask. Maybe it was to dig into ourselves and hear our own voice. Maybe it was to just be silent and to listen to what was actually going on around us. I think we have missed the lesson.
I found myself, in that first month, nearly angry at the views and reactions from different people–some I had never even met, but I read their opinion. I found that people who I had much respect for held onto some crazy thoughts that I never would have fathomed. I found I had to snooze even good friends when the tirades got too unimaginable for my head. I found it was better to keep my opinions to myself. I found that the more isolated people became, the harsher the responses. Funny, I guess a lot of people just simply do not like their own company…fear, maybe, but none the less, very real.
Have we sat back and examined what all that has happened? Not in the world, not in the media, but how this all has changed us? I believe we have not studied as hard as we needed to for this piece. I think we have missed the humanity in each case, each number. I think if we were not the person who could not hold the hand of the person we loved for one last second, for their last breath, we overlooked it as someone else’s problem. We overlooked truths because they did not fit our own definition.
I think that is it. If it was not ours, we did not respond with heart and we led with anger. If it was not ours, we pressed for our own agenda even if we did not totally agree. If it was not ours, we felt free to give direction unto an unknown place, but we weren’t going to follow that map ourselves. We arm-chaired quarterbacked every little segment and fell for every bit of the delirium that pushed the insanity forward. We looked too much to a screen and forgot about looking up…
I don’t know when this will all end and I do not know all of the “why’s”. I do know that it has changed me in many ways and I am not certain where it will take me. I am still adjusting to what others believe should be my new standard. I have never been a good student of conformity. Until I get a real grip on what my lessons are, I will continue to study this life…
Covid, I have a garden with your name all over it.
We have entered the world of Covid. I dare not say “the new norm” as the old one wasn’t so normal either. I just know that somewhere in all of this–the sickness, the current state of mind (and that certainly depends on what side you fall on because we have all learned there are sides) and the ways we are each adapting to what is spinning around us–there is a lesson. There is ALWAYS a lesson.
There's something to be said...my Southern side of 50 