My First Chronic Illness Symptoms
All of the special dates we save like anniversaries, birthdays, holidays… they all have a special meaning that most people recognize.
Although I no longer celebrate those (long story for a later time), there is one date that is probably the most important to me.
D-Day… Diagnosis Day…
Since my diagnosis took over a decade to receive, I held on to the day that my body stopped working… you know… the first debilitating day you’ve ever experienced.
February 18, 2012…
2012 Me… the camera quality for phone was not there yet, lol
What felt like a normal day would end up being a small glimpse at what the next ten years of life would look like, and it started off with a banana…
FIRST NOTICING SYMPTOMS
I had a banana for breakfast and skipped over the soda. I wasn’t a coffee drinker then, but I made a 20oz Pepsi to start my days off each morning.
I made a decision to start eating healthier this morning. A banana and a bottle of water…oh if only it were Kale. This seemed like just another normal day for me.
During this time in my life I was 24 years old and worked at a small business for a wonderful company ran by a wonderful man. There wasn’t even a stop light in this town… it was SMALL.
I learned so many skills from this job and often wondered how I would ever leave it once my schooling was completed. I was in the nursing program prerequisites at that time… Anatomy and Physiology to be specific…
I think, just like most people in the chronic illness community, I never expected for my first symptoms to be chronic … lifelong … never ending…
After over a decade I still have some of the same issues I did on this day in February 18, 2012. It appeared this would be a long journey, that at the time, I was not prepared to take.
WHEN THE NORMAL DAY TURNED SYMPTOMATIC
On this morning, I was working behind a counter with a register and filling in for a coworker. I would go over the accounting books each morning in a little, tiny, poor lit corner of the store around 4:30AM. I had been experiencing some headaches.
This seemed perfectly normal for the poor lit corner readings, and this is what prompted me to drink no more soda… another contributor to the headaches I had assumed.
The morning carried on like normal and around lunchtime or so, I had a customer come in and request something from behind the counter. When I turned around to grab the item, I dropped it and bent over in agonizing pain.
My eyes felt like shards of glass had been thrown directly into them. I had NEVER felt something like this before. I ran to the sink and quickly tried to flush them, thinking I must have gotten something in them.
After the rinse of cold tap water, I felt some relief and apologized to this poor customer (who I knew very well… small town and all) and continued on ringing up the now line waiting behind her.
I had some relief for about five to ten minutes. I stepped outside, as it was shift change anyway, thinking maybe some fresh air would help. WRONG!
As soon as I opened the very heavy glass double doors to the store entryway it felt as though someone had thrown piles of beach sand directly into my eyes.
Thankfully, I lived about five miles from the store’s location and drove home safely.
Once I got to my home I felt like I had been running for miles (what I now call fatigue) and could barely lift my head up.
I took a shower and laid down to see if some rest would help… I slept for over eight hours.
I only realized how long I had slept because that night I had plans to meet some friends for a birthday dinner at a local restaurant. My phone had been ringing nonstop and woke me up.
Forgetting about the “sand in the eyes” incident, I quickly threw on some clothes, light makeup, and made my way out the door.
When I arrived to the restaurant I walked through the door and BAM … it hit me.
I keeled over and could barely open my eyes. Something was very wrong here.
I apologized to my friend and left promptly, only making it home because once again this was a five to ten mile drive.
The cars that were driving in the opposite direction of me would pass and shine their lights. It burned. It was blurry.
I had to prop my head up with my hand to keep it at a level where I could see the road because it felt too heavy to sit on my shoulders.
Once arriving home I went straight to bed and hoped that this was a flu and that a good nights rest would improve this new symptom of mine. Spoiler… it did not.
2012 photo… I realized after taking this photo that I couldn’t hold my head up and had become very weak.
THE NEXT DAY AFTER THE FIRST SYMPTOM
Since I was still covering for the person at the family owned store, I could NOT miss this day of work. Actually, I had NEVER … not once… missed a shift.
My eyes were still very uncomfortable but no stinging or feelings of shards of glass being thrown in them were present.
I had almost made it through a nine hour day when I went to unlock the second side of the front door (routine for every afternoon when the children would come and get snacks) and it happened… I could not use my left leg.
I knew at this point that this was NOT the flu and that something was terribly wrong.
I just “felt” it.
I decided that instead of going home, I would head straight to the local Emergency Room for some help.
Thankfully it was my left leg, that I was now dragging around with me, and I still had the ability to drive.
I was still so fatigued and really just wanted to lay down and nap again. I had class that night though and needed to figure out how someone could fix me quickly.
Yes, fix me… because at this time I thought this was all a short term illness.
MY FIRST EMERGENCY ROOM VISIT
Due to the nature of emergency room visits and how many I have had at this point today, I think I will share the experience in a separate post. I feel like there are several take-aways that may be helpful to others.
But for this part of the story, just know that I went to the emergency room and explained my symptoms.
I can only imagine how I sounded… frantic, scared, and confused…
I left that visit with a pain medication in my system (I didn’t know what that was at the time) and a diagnosis of a Urinary Tract Infection (UTI).
Yes, you read that correctly and NO I did not complain of any burning with urination or anything of the sort.
I did have bacteria in the urine sample I was required to give… you know… because clearly I was on something (please hear the sarcasm here).
When I was gathering my things behind the hospital curtain I overheard a conversation at the nurse’s station about how “people will really do anything for pain medication these days” from someone I went to high school with.
Needless to say, I was so embarrassed and just left the facility as quickly as possible.
Remember, I had class that night anyway and needed to make it there or I would be kicked out of the nursing program.
Battle wounds from the blood draw… iykyk
Dragging my leg, I made it to the college and had completely forgotten about an exam we had. It was a quiz on the bones and I can still see the table with laid out bones and questions beside them.
When I got to the very first bone the femur, which happens to be one of the easiest bones to identify in this manner, I drew a blank.
I couldn’t spell my name on my paper, I couldn’t remember the instructions of the assignment, Hell.. I didn’t even know what I was looking at.
I left the test and went to the closest restroom and just cried.
My brain was mush… I couldn’t comprehend where I was, what I was doing, or why I was having problems accessing information that I clearly knew.
The ride home I turned my music all the way down (which was very uncommon for me) and just wondered how I would ever figure out what was happening to me…and why.
DAY THREE: FINALLY CALLING A DOCTOR
Luckily, I knew of a nurse practitioner that I would send a text to the next morning explaining what had been going on.
She got me into an ophthalmologist to check out the eye issue in the same day. I know this isn’t normal protocol and I consider myself VERY lucky for having her in my life.
I had never been to an eye appointment before. This was a first.
After getting checked in and being seated in the eye chair (as the kid would call it), the nurse instructed me on the eye dilation drops that would happen next.
Now, note that at this time I had NO anxiety about seeing a doctor or having a medical condition… it just wasn’t scary to me at all and I was with a trusted friend of the family.
After she put the drops in my eyes it took all of one minute or less for me to slide down the back of that chair and end up on the ground.
I was experiencing a vertigo type symptom where the room was spinning, my vision had changed to blurry, my speech became slurred, and I couldn’t lift my head up at all.
She quickly got the doctor who explained that this is a rare reaction, but does occur in less than 2% of the population. He monitored me for about thirty minutes and then we continued with the exam once I could stand on my own again.
When he looked in the back of my eye to check on the optic nerve he saw nothing wrong with the nerve itself but loads of inflammation.
He made the diagnosis of Posterior Uveitis and prescribed me predne-forte (prednisone for the eyes in the form of eyedrops) and gave me his cell number to text him if anything became worse or I was feeling no relief.
I actually did get some relief from this with the shards of glass and burning feelings, and during my follow up which was in about a week we had a discussion.
He explained that this condition does not come out of thin air and there is usually an autoimmune lurking behind the reason it happened. His guess was multiple sclerosis.
Good guess. Probably one of the closest guesses.
He did something for me in that follow up that would actually help me get diagnosed over a decade later.
He provided the eye pictures (scans) and a well written note to any future doctors I may see with his findings.
This man is a part of the reason that I have a diagnosis today of a rare disease.
Why? He documented.
He also explained that “this will be a fight, but don’t give up. Something is wrong with you that is more than anxiety.” I had no idea at the time just how much I would cling to these words on the worst of days…
WHAT I LEARNED 10 YEARS TOO LATE
The documentation from a visit in 2012 would help a diagnosis confirmed in 2021.
Technically, the clue would lead the path in 2019, but the ACTUAL proof of all proof was discovered in a 2021 surgery by my now neuromuscular specialist.
For the first hundred visits or so, I got some documentation but not all. I didn’t ask for the disc for images, some information got lost in a fire, a lot of the dictation was wrong in the documentation I did receive (like removing the wrong parts of my body during a hysterectomy-another story for another day), and so forth…
My point is that if there is a lesson to be learned…
From THE MOMENT you start experiencing your first symptoms, START COLLECTING YOUR DOCUMENTATION.
Even the normal tests or labs or scans. It all matters.
If you are having a hard time getting things done, because lets face it… right now today it’s a seven month wait for a specialist for me and even longer for the testing… and LOTS OF PENNIES to pay for those said visits and tests… you can document what you can.
For example, blood pressures, pule ox readings, temperatures, all of the food you intake, bowel movements, blood sugars… all of this is REALLY important to creating your baseline or determining what is wrong with you.
Video wasn’t as prevalent back then as it is now, but I WISH I would have recorded a diary on my phone. Just a simple, this is my day and these are my symptoms. Even with the chronic pain it would help have helped me so much.
Pictures of weight gain/weight loss, rashes, facial expressions, posture.. all of these can be helpful when putting together your puzzle pieces and require no copay.
Will every doctor you see want this information? Nope. But the one who does will be so very happy that you have it all organized by date and body system.
I TRULY think this is why my diagnosis actually happened… a 2012 eye scan with a letter from an ophthalmologist that led him on the path of a rare disease.
HOW I DOCUMENT MY MEDICAL INFORMATION
Now, everyone has different ways of how they collect their medical information and I think the best practice is to do what works best for YOU.
If this is all new for you or you are looking for a system that works, I did create a FREE downloadable template that you can either type on, or print and write on. It also includes a medication log and explanation of what all goes in the chart I create and use for myself and family.
I worked as a nurse and picked up a few things, asked some of my physicians who I have been seeing for over five years, and put together a system that works for both going to the doctor and keeping my own record.
Other than the physical paper chart I create for myself, the husband, and the kid, I also make it a point to scan each document onto an external hard drive about once a year.
We have A LOT of information and the 1TB size is plenty for multiple people, multiple years.
I file the disk and paperwork for that year away (unless I need some of it) and then start over in my binder for the new year. This helps with insurance claims, being able to find documents more quickly, and you look a little less crazy when attending medical appointments… sometimes.
I ALWAYS ask for the disc when I am getting an imaging scan done. Why? Because the dictation of the person reviewing your imaging may be incorrect.
This isn’t that they didn’t do their job (although mistakes happen) but maybe they weren’t even looking at the right areas to report on.
Again, even if your information is normal it can be helpful one day in the future to use as a comparison. It can also be helpful to rule out structural genetic conditions.
I do this for the kid for this reason. If there is a test that can be done, we try to do it once and record it (as long as it is a simple Xray and not an invasive test like a spinal tap).
Something I learned from nursing that still helps me in my patient journey is to be very specific and precise. What was the medication called? What was the dose? When did you take it? Did you take it with or without food?
Any information can be helpful whether you can see it or not.
AND the greatest lesson I have learned is that: The Weird Stuff Matters.
You know how we all sit around and say, “I never knew this was a problem until…”
I see a lot of people in the Ehlers Danlos community not knowing that their joints were hyper-mobile until looking back at photos of themselves. (The bent knee in the family photo… iykyk).
The End To This Ramble
For the record, I still love a banana smoothie… minus the GERD flares.
When symptoms first start I think it is a normal response to want to “fix it”.
That is one difficult feeling to let go of as the years go on. When we don’t have a diagnosis… well… that makes is even more DIFFICULT.
I am still searching for some of my answers, but I am now more confident in the treatments I am on, the emergency care I receive, and the way I search for new answers to new problems.
If you came here from the VODCAST I appreciate you taking MORE time to read this. If this is where you found me first, I also appreciate the time you took to read this, as I know our non-flaring time is precious.
I cannot predict what each and every person will go through when they experience their own unique set of “first symptoms”. I wouldn’t even try to.
I can predict that the symptoms you experienced will probably hang around if you have a chronic illness in some way, shape, or form. That’s just how it goes. I mean, we even add more on as we go on… sigh…
And if you are wondering what happened after this wonderful ophthalmology appointment I had… well get ready, because it is not roses from here… not for another 7 or 8 years anyway…
This journey for me had just begun and I was NOT ready for what was in store… not in the least bit.
Next up… the neurology visit…
Until next time, I hope you day is a better kind of day today!