The Day the Stroke Happened
Four days before we were to leave for a trip, I started having pain in my head and neck. I thought it was just a pulled muscle because I had been doing a lot of yard work that week. On Thursday, May 10, my husband, mom, Mimi and I headed out on a ten hour trip to Ohio for my cousins wedding. During the trip, the pain escaladed and I just kept taking tylonal Twenty minutes before our destination, I started experiencing dizziness, nausea and vomiting. I was unable to stand. My legs felt like Jell-O. I had dizziness to the point where my body couldn’t hold itself up and I felt heavy. My family got me inside our hotel room and the symptoms eventually started to cease. I was determined that I was just car sick and had a migraine. I did notice that my right eye was blurry after getting settled, but I figure it was from the migraine.
Little did we know, that what I had expierced was really a stroke. Typically, when having a stroke, one should act fast and get that person to a hospital because every minute counts.
Days Leading Up To Diagnosis
Not knowing I had a stoke, I woke up in the morning and got ready for the day. We headed to town to get hair cuts. Yup, I got a hair cut with my head throbbing and vision in one eye. We also went to walmart where I think I bought sunglasses. Then we went back to the hotel so I could rest for a couple hours. Somehow, I mustered up enough energy to make it to the wedding. I stayed as long as I could, but my head was pounding and not being able to see out of one eye was really throwing things off. The fatigue was really hitting me and I was desprite to just lay down.
The next day was the longest, most agonizing trip of my life. Tylenol wasn’t touching the pain in my head. The pain reminded me of the nerve pain I had from shingles 18 months prior. I remember yelling out in pain because it would get so intense.
On Sunday, our first day back home, we went to a local hospital to get me checked out. I was told it was a migraine. I think about that now and it makes me think they must of thought I was such a whimp for yelling out in pain for a migraine. I was perscribed migraine AND anxiety medication. I never took the anxiety meds. I don’t even remember be prescribed them.
On Monday, my husband went back to work and I made an appointment to see the eye doctor because my eyesight was not improving. I wasn’t able to get an appointment until Wednesday. I have no idea how I managed for those following two days alone while my husband was at work. It’s a miracle I survived.
On Wednesday, when I saw the eye doctor, he said that my eyesight was fine. He suggested I go to my primary care doctor. We made an appointment with my primary care doctor for that afternoon. It was there that my primary care doctor saved my life. She ordered a CT scan, which first had to be approved by the insurance. So we sat in the parking lot and waited. Looking back now, it’s amazing that it was approved in less than a couple of hours because usually it takes days or weeks. The only way to get something done like that the same day is by way of going to the ER. Remember that we tried that on Sunday and no tests were done. It was now Wednesady. Six days after the stroke occured.
CT Scan and Results
So, once it was approved, we were headed to a near by medical center for the CT Scan. After the scan, we were sent to another waiting area to wait for the results. It was there that my husband got the phone call. As soon as he got off the phone, he grabbed my hand and started walking me out the door and down the large empty hall way. I said, “What did they say?”. He said something about taking me to Upstate and that there was someone waiting for us. I stopped him in the hall and I will never forget that moment when I said, “Why? What’s going on?”. He proceeded to tell me they said there was a mass shown on the CT Scan. I responded with, “No, there isn’t”. That’s all I could say over and over. No, there isn’t. He told me we just have to go see what they have to say. I wanted to fall on the floor and kick and scream like a child at that point. My husband continued to just say positive things to me and somehow that got me to move from that spot in the hall and to the truck.
I really thought that it was going to be “clear”. That there wasn’t going to be any news except good news. That there was nothing to show on the scan. It was something out of a movie or a really bad dream.
As we got in the truck to go down the road to Upstate, I lost it. Honestly, I was full of fear and I was thinking the worst. I was uncontrollable and yet my husband had to keep it together to get me to Upstate. In that moment, I thought I had a brain tumor. Let’s face it, when someone tells you that there’s a mass on your brain, that’s usually the first thing that comes to your mind. I literally was thinking I only had a couple weeks left to live at that point.
So, instead of meeting someone like we thought, I had to go through the normal process of being admitted to the ERl . As I sat in the waiting room, I finally snapped out of it. All of a sudden, I was overcome with so much peace. Peace that surpasses all understanding. Those horrible thoughts immediately went away. In that moment, I already knew it would not be a brain tumor.
Once admitted to the ER, I had an MRI done. Then the wait began. While we were waiting, Christopher’s sister, Katherine and her then fiance’, but now husband, Layne, who is also a nurse, came, which brought comfort and got our minds off of things.
With every doctor that came in to talk to me, there was no fear. There was no turmoil. I couldn’t even cry. I felt fearless. I felt confident. I felt brave. Then the doctor that came in to actually give us the news was really hard to read. He asked me one question. I don’t even remember what it was now, but it immediately made me think the worst all over again. At that point, I did break down a little. He kept asking me questions and I kept trying to answer him. All the questions just made me more confused.
Finally, the nurse came in and announced that the MRI revealed that I had a blood clot. I smiled and said, “oh good! That’s a relief!” I had no clue at that moment what the words ‘blood clot’ really meant.
After hearing the news, I thought I was going to be able to go home, but then I was told that I had to be admitted. I pretty sure at that moment I didn’t fully understand what was going on. Not sure when or who told me, but I had a Cerebral Venous Thrombosis stroke.
Admitted To The Hospital
So, there we were waiting until almost 2am before transport to my room. I had no idea what was ahead of me. I was just tired and wanted to sleep. When I arrived in my room, I was greeted by the sweetest nurse. I was able to have her for two different night shifts. She never lost her pep from 7 at nite till 7 in the morning. She was like a ray of sunshine I needed in a very uncertain time.
The first thing that my nurse did was go through a registration process again. I thought was weird because I had already gone through it in the ER twice. Why that info wasn’t already in the computer is beyond me. At this point, Chris was answering so it wasn’t like a test to see if my memory was good or not.
My Hospital Experience
The first night and entire next day, I never slept. Every time I turn around someone was coming in asking me questions. The same questions. They all asked the same questions over and over again…
-My name
-Birthdate
-Where I was
-Month and Year- at first I said July 2016, but when they would say “July?” I was able to correct myself.
-President(asked last 3 days)
-Squeeze my fingers as hard as you can. (Their fingers must hurt after a while)
-Put your hands out in front of you.
-Touch your nose with your right hand… now your left.
-Lift your right leg… now your left.
When I got home from the hospital, it dawned on me that all those questions made me feel like I was a preschooler. Was this payback for all the years I taught preschool and asked them questions like this? LOL
On the first day I was there, two student nurses came in and had me do things like marching, going up and down stairs with alternating feet, walking on my tiptoes. Yep, I was in preschool!
That first day, Christopher had left to go home and get some sleep and bring me food. I refused to eat the hospital food. Those hours alone were agonizing and depressing. Random people would walk by and look through the door at me, but never say anything. It was very uncomfortable. I must of had a look on my face of discussed because someone finally told me why so many people were looking at me. I can’t tell you now what that reason was though. When my husband got back, I told him I didn’t want to be left alone again and I wasn’t. Between my husband and my mom, I had someone with me 24/7. My Mimi also stayed with me the last night.
I, also, had a PICC Line put in my arm on the first day. I didn’t want to go through with it at first. As you can imagine it would be kinda scary to have a procedure done like that. Their was a group of ladies that came in put in the PICC Line. The ladies were commical! It was like a routine they had rehearsed for a show. The humor of it all put me at ease. Once it was in, I was so grateful I went through with it. I didn’t have to deal with any IV’s or pokes from lab work. The lab tec would come in during the wee hours of the morning and I would barely know they were there.
I still had to deal with the blood pressure cuff and all of the other cords attatched to me. The first day was blood pressure ever hour. The second day through the fifth day was every two hours and they let me take the cuff off my arm. My husband was really good about keeping track of the time so we knew when to put the cuff on. It took a while to get used to having all the cords on me. Every time I went to the bathroom, which if you know me, is a lot, Chris unhooked me and plugged me back in. We got a good system down and my mom and Mimi learned, too. The hardest part was being woken up during the night so they could do the neuro assessment… all those questions I talked about. Some nurses woke me up more than others. Everyone was different. There were a couple reports of me answering in my sleep when asked. I guess that was a good sign. lol
I had a team of doctors and other medical personnel come to my room between 10 and 11 each day. They dressed in white coats and each had a lap top they wheeled around on a cart. You could tell that research is a big part of what they do. I really appreciated how they communicated and stayed on the same page with each other.
Treatment and More Tests
Other than the MRI in the ER, I had several other test done. They were 4 CT scans, EKG, Ultrasound, and EEG. The worst and most unpleasant was the EEG. It is used to record electrical patterns in the brain. I stayed right in my room for the test. First my head was marked with chalk. Then some kind of cream was applied to my head/hair. The technician then attached electrodes to my head/hair. Then I sat in the dark for quite a long time until the strobe lights started. The strobe light would come on and I would have to open my eyes for so many seconds and then close them.
Are you picturing this?? All I could think was how am I going to get this out of my hair!! As soon as it was over, thankfully the hospital has a shower cap that washes your hair. It still took days to get it all out of my hair!
I could not believe I had to go through that when my head was still hurting and very sensitive. Having someone press on my head and have bright lights in my eyes was not exactly fun. Especially after being in excruciating pain for days. It’s definitely an experience that I will always remember!
The only medication I was on for the duration of my hospital stay was heprin. On the last day, they took me off of it and gave me my first dose of coumadin/warfarin . That way so they could regulate my levels before leaving the hospital. In fact, the last night in the hospital, I wasn’t hooked up to anything and they allowed me to sleep with out anyone coming in.
My six days in the hospital were certainly a memerable one. I truly had a great experience considering the circumstances. Little did we know those days in the hospital were actaully the easy part.
Crohn’s and Bloodthinners Don’t Mix
I left the hospital very fatigued and with a perscription for coumadin/warfarin. It took a good month to regain my strength and the blurriness in my right eye to go away. Being on coumadin required me to get my PT/INR levels checked at least once a week. When my levels were to high or to low, I had to get them check two or three times a week. Three month into being on coumadin, I started having a Crohns flare. You can read My Crohn’s Story here.. I will just mention here that PT/INR levels are regulated by what you eat. Being in a Crohn’s flare, made it very hard for me to eat a well balanced diet. It also put me at risk for bleeding, which did happen a few times which led to very life threatening circumstances and hospitalizations.
I countinued on coumadin until the summer of 2019. I was convinced that coumadin was the reason that every medications I tried in the last year would not help my Crohns symptoms. So, I asked my nuerologist to switch my blood thinner. We decided to switch to Plavix. I didn’t have to get my PT/INR levels checked being on Plavix. After starting this blood thinner, my inflammation levels were going down, so at the time it seemed like we were headed in the right direction and I made the right choice to switch blood thinners. One week after Thanksging in 2019, I had another life threatening abdominal bleed. This time around this occurance actually propeled my health in the right direction. You can read more about that in My Crohn’s Story. I will just say here that during that hospital stay for the abdominal bleed, I was taken off Plavix and from that day forward I have not taken any bloodthinners. I was also released from my neurologist in 2019. I do get an occasional migraine, but I’ve learned how to combat them.
Conclusion
It was never determined why I had a stroke. When I was in the hospital, their guess was dehydration. I’m fine with not knowing all the answers. I’m just grateful to be where I’m at right now. I know that most people that have a stroke don’t go off bloodthinners and most deal with life long struggles. Its hard to think about that season in my life, but its good to remember how far I’ve come and how God has redeemed it all.