March 3, 2019 — exactly two months ago — the day our lives were turned upside down
Let’s set the mood. It was 5:30 pm on a Sunday and I was folding laundry to get my husband packed for work. Nothing out of the ordinary. I always pack his bags and make sure he has everything he needs while he’s away.
It was in the middle of folding his gray, oil stained coveralls, our world instantly changed.
My left arm started tingling. I felt dizzy and confused. I lost grip strength in my left hand, and had developed significant weakness in my left leg and arm. So, like any husband would do, he swept me up and rushed me to the local hospital.
Once there, I was coherent, but couldn’t get my words out. Soon, I was labeled as a possible stroke victim and chaos began. I was rushed for a CT scan, that came back clear, and was admitted to the hospital for more testing.
I had a lumbar puncture, two MRIs, an EKG, 18 vials worth of bloodwork drawn, arteries checked for blockages, rare autoimmune testing, and some other tests runs.
They ALL came back normal. I was thankful it wasn’t serious, but felt so lost. I couldn’t get out of bed and walk without help, couldn’t lift my left arm, spoke with a slow, Southern draw that sounded robotic, and had no grip strength in my left hand.
I remember being so excited that I could pick up my pudding with my left hand one night at dinner. I also remember the moment I said “pudding” and sounded just like Forrest Gump, and the room broke out in laughter. I mean, we had to find the humor in something.
I remember looking around the room at all of the visitors that I had, all leaving with red eyes from crying tears over me. I remember the many sweet people who shed tears in prayer over me. I remember literally feeling the brush of wind from angel’s wings as tears of fear rolled down my cheeks in the MRI machine. I told everyone Jesus wasn’t ready for me yet, but I knew something about this event was different. And, to be honest, I was a scared girl on the inside, putting on a brave front for family and friends. I knew God was faithful, and trusted His goodness would prevail, but I was overwhelmed.
And that’s where the fight began. My family began begging for me to be transferred to a larger hospital, in a larger city for more testing. My nurses were wonderful. They encouraged us to fight for answers. Yet, the hospitalist I was forced to see and the neurologist on call, both repeatedly said they knew not what was wrong, but wanted to just send me home. Talk about a crushing blow!
After learning a sweet friend worked in administration at the hospital, (cue God’s faithfulness and provision) through heartbreak and tear soaked eyes, my family begged with her for a transfer. And, the process began.
“The neurology team at the hospital accepted you as a patient, but the the hospital won’t admit you.” We heard that over and over again for 24 hours. The call was made to the LAST hospital on the list. I began earnestly pleading with God for hope, for help, and for a hospital. Because He is faithful, I was transferred to a neurology floor at a huge hospital.
I was there less than 24 hours, and major things like stroke, seizures, multiple sclerosis, Lupus, artery blockage, TIA attack, etc has been ruled out. Then, I received the news that I suffered from sporadic hemiplegic migraine.
Wait! What are you talking about? I don’t have migraines. Ok, I get dull, throbbing headaches frequently, but they aren’t debilitating. I was started on a migraine concoction via IV, and felt better within 4 hours. So, I thought, maybe they’re right. I was referred to a neurologist in the big city, who is also headache specialist, and sent home.
Once home, I attended bi weekly physical therapy sessions where I learned to walk, trusting my left side again. I completed mental tasks using my left hand and arm that brought me to tears because suddenly, the girl who was a straight A student, couldn’t figure out how to get a bead to move down a wire with her left hand. I was so uncoordinated and frustrated. Suddenly, the girl who ran 3 miles for fun and attended HIIT workouts frequently, became extremely fatigued walking less than 1/10 of a mile.
I knew recovery would take time, and I was willing to give it time, but I longed for a normal life. So, toting a walker, I returned to teaching my sweet students, but only for a short while, 7 days to be exact.
It was Sunday, March 31, 2019, and my husband was working. I got very sleepy in the afternoon, so my 7 year old and I took a nap. I woke with a slight headache, took some ibuprofen and thought nothing of it. Until, all of the crazy symptoms resumed. My left side tingled and became weak. My speech began to be delayed. I felt disoriented and confused. The first time, it was ok. My husband was home to help. This time, I was frightened, because how could I possibly be a good mother with these symptoms.
My parents rushed me to the ER where I was given a migraine IV and sent home. My child and I spent the next 5 days living with them. I was placed on new medications that literally knocked me out. I slept all day, everyday. I became somewhat of a walking zombie. And, we knew something more was going on.
That’s when we remembered I had a permanent birth control device, Essure, implanted a few years back. We knew we weren’t having any more children, due to my pregnancy complications, and it seemed this was a better option to permanently fix that than returning to surgery to have my tubes tied. My family began to wonder if I was possibly reacting to the metal in the device.
I swear every single one of my family members is a google expert. Each one of them found something different to build their case. The device had been recalled, and numerous testimonies were found saying how young women, just like me, were healthy and active and began to have a variety of debilitating health conditions post Essure placement.
That Thursday, I had another episode. This time, with blurry vision and dark spots in my vision.
Fast forward, to that Friday, and my husband rushed home from work to take me to the OBGYN that had performed the procedure to discuss removal. “The only removal option is hysterectomy, but she’s not neurologically stable enough for surgery.”
We left his office feeling a little defeated. He wouldn’t order a heavy metal screening. He wanted to place me on hormone supplements although I had no symptoms of a hormone imbalance, and hadn’t checked any kind of blood work.
That’s when “episode 4” began and my husband , once again, rushed me back to the ER. Once again, I was given a migraine concoction via IV. My neurologist was SURE we were missing something. She suggested admission for more testing, yet her practice was 3 hours away and she isn’t affiliated with any hospital locally to make that happen. So, the ER doctor performed a 2nd lumbar puncture at my bedside, and began the process for getting me admitted.
But, remember the local neurologist I had seen the first go round? You know, the one who said he didn’t know what was going on, but there was nothing he could do? He was the one who had a say in my admission. And, as you guessed, he said no.
So, ambulance ride #2 began, and I was transferred back to the neurology floor at the big hospital, in the big city. I was seen by several doctors on their neurology team. I endured a 2 hour MRI of my head and spine. It all came back normal! They were baffled, once again. We questioned them about the Essure, and they said that was out of their field and to follow up with an OBGYN, eye doctor, and an endocrinologist. You see, I already battled two autoimmune diseases, Hashimoto’s thyroiditis and Raynaud’s phenomenon. So, maybe it was endo related. The doctors kept telling me it wasn’t related to the Essure. But, when they left, the sweet nurse, who also served as a patient advocate, suggested we follow through with our theory.
And, I was sent home. My left sided weakness had pretty much corrected itself by this time, but my speech was still “purposeful”. It was devastating at times. I mean, I talk for a living. I’m the teacher who gets random ideas for lesson engagement and runs with it, without writing a script. Words literally roll off my tongue in the classroom. I can give speeches and presentations for my co-workers without note cards, and it would all sound like it was rehearsed. I taught Ladies’ Bible Study and never planned a lesson. I simply prayed for God’s guidance and He never disappointed. Our group talks always provided spiritual growth and insight. Yet, now, I had to think of the words I wanted to say. Conversations made me mentally exhausted. I didn’t want to talk, because it was hard.
I saw my neurologist in the big city again. She started me a new medicine to take at the onset of symptoms, and she referred me for speech therapy. I told her of my concerns with the Essure, and she suggested immediate removal. She told us about a documentary she had watched recently that was circulating the medical field, with eyes opened as big as Texas. You see, every other doctor danced around the issue. “Nothing in the medical books, suggests it will cause neurological symptoms.” That’s the standard answer we ALWAYS received, but she believed in me. She knew nothing I had endured thus far was “life threatening” but it was definitely “life altering” and she wanted to see me better. She wouldn’t release me to work, drive, or stay alone with my young daughter, until we had all of my symptoms under control. So, we packed a suitcase and bounced around between family members as I schedule drivers to take me to my various dr appointments and to get my daughter back and forth to school while my husband was away at work.
In the next three weeks, I saw an eye doctor. My vision was the same from my previous year’s eye exam. The pictures of my retina and optic nerve were normal. It wasn’t a vision issue. I saw two endocrinologists and all of their testing came back clear. No hormonal issue. No diabetes. There was nothing they could do.
But, we still wondered about the birth control device. So, my amazing husband began lobbying on my behalf. Y’all, he seriously amazes me. He probably should be some kind of lobbyist in Washington. Or, maybe a negotiator for some big law firm. He called the high risk pregnancy doctor who delivered our preemie baby. Days later, the doctor called and suggested immediate removal.
I visited a new OBGYN in our area, who was not taking new patients (cue God to work a miracle) and had an appointment within the month. I told her my story, and how many of health problems, the autoimmune diagnosis, recurrent Bell’s Palsy spells, shingles, mono, scarlet fever, the new “migraines” and many more random illnesses, didn’t begin until after the device was placed. She agreed something was wrong. She had only implanted one Essure. They were released in 2002 and recalled in 2018. So, in 16 years, she only placed one? She explained how she didn’t trust them and they weren’t researched enough before being placed on the market. She agreed to removal and a hysterectomy was scheduled.
The next few days were normal. I attended our family reunion and got to hug the necks of all of my aunts and uncles who had been earnestly praying for me. The next day, I got up, attended Sunday School with my parents, and we were ushered in to our seats for Easter Sunday service. That’s when it happened again. Silent tears starting rolling down my cheeks as my neurological symptoms returned. I looked at my dad with fear, and told him I was having another “episode”. They took me home, gave me the new meds, and I took a nap. But, it was Easter, and I wasn’t going to miss watching my kiddo hunt eggs. So, I took some pain meds, sucked it up, and attended two family functions that afternoon. One thing I had learned over the course of this event, was that time is valuable. And, I refused to miss out time I had been given.
The next few days were normal. My speech was normal. I had a good amount of energy. I even went on a 3 mile walk one afternoon. I cooked lunch for my sister and I. I cleaned the kitchen. I did laundry. I played “tennis” with my daughter. I played board games and read books with her. And, life was normal. In fact, I was beginning to become frustrated that I couldn’t work and drive, because I felt pretty good!
On April 25, 2019, I was scheduled to remove the Essure device via hysterectomy. The 2 1/2 hour operation went off without a hitch. Everything looked great and my family got to see some cool photos of my insides. I was kind of jealous. I woke up from the anesthesia just fine and immediately asked to see my husband. I was moved to a room, where he was waiting, and was so happy everything had gone well.
But, I was hurting, and couldn’t receive any pain medication. My stomach was so swollen with gas, and excruciating gas pains were shooting through my stomach and chest. I felt light headed and in a fog. That’s when they told me I couldn’t take medication until my blood pressure stabilized. It was staying in the area of 70s over 30s and 80s over 40s. Which wouldn’t be a huge concern if I were at complete rest, my blood pressure is naturally a little lower than 120/70. But, because I was in pain, and alert, it should’ve been higher.
A blood test was ordered to check my hemoglobin and it had dropped from a 14 (pre- surgery) to an 8 (post- surgery). The decision was made to give me 2 units of blood via transfusion. Side note: if you’re not a blood donor, consider it. I’ve always donated, but never thought I’d have to be on the receiving end.
My hemoglobin levels increased slightly following the transfusion. My blood pressure was closer to a normal reading. I was able to take something for the pain. I was able to get up and walk. Things looked better! I went home the next day, with orders to eat steak and take iron medications, along with your typical post- op instructions.
I felt pretty good. I was very sore, but able to get up and move around slowly. My pain levels weren’t awful and after day 2 at home could be controlled with over the counter ibuprofen and Tylenol. I was ecstatic! Things were definitely on the mend.
Until, I tried to sleep. It didn’t matter what I did, nothing was comfortable. My entire body ached. That’s when we started taking my temperature and noticed I was running a slight fever. My, once again, amazing husband stayed up all hours of the night, checking my temperature, placing cool rags on my head, and holding my hand while whispering silent prayers.
Fast forward to the Wednesday following my procedure. I had a follow-up appointment where we noticed there was significant, uncommon bruising on my abdomen. My surgery was laparoscopically assisted and I only had two small incisions. The bruising should have been minimal. Yet, my entire stomach is a large bruise filled with every color of the rainbow, and is still so swollen I can’t fit into my regular T-shirt’s, and am only comfortable in pajama pants. The doctor explained when the camera was inserted it must’ve hit a blood vessel in the muscle, and all of the blood rushing to the surface is causing the impressive bruising. She assured me it would go away, but it might take a long time. She also started me on an antibiotic, just to be sure there’s no infection, and re- drew my bloodwork.
My husband and I returned home. He made dinner and we were watching tv. He kept asking if I was ok because evidently I was staring in space. Our daughter was outside playing with her goats and I was simply looking out the front door waiting on her to run by giggling, the goats following her like puppy dogs.
That’s when something began to feel different. Suddenly, my left hand and arm felt numb and heavy. I couldn’t close my fist. My left side of my lips started tingling and my face started drooping. I began noticing that it was difficult to find words. I didn’t want to worry him. It would all go away, right? WRONG!
My symptoms began worsening and I yelped out with fear and crocodile tears that it was happening again. I was in panic mode. You mean, all of the surgery issues didn’t change this? I’m still having issues? My husband looked me in the eyes, held my hands, and assured me I was ok. But, I was devastated.
He began calling my OBGYN and neurologist to see if I could take my migraine meds with the other meds I was on post-operation. They both called back and approved it. They meds help subside some of the headache and the symptoms. They both explained it could take 2-4 weeks for us to know if the removal of the Essure will “fix” my problem.
So, the next few weeks will be crucial for my recovery. We aren’t sure yet if we found the answer, but we are sure we serve a faithful and loving God whose guiding us every step of this scary journey!