Six Long Years

There are days that are meaningful to everyone. My days hit every year beginning September 9th and this year, 2022, they mean even more. It’s an odd anniversary for me of sorts and this year, the days line up perfectly with the calendar as they did six years prior on a weekend that changed my life forever.

As I write this, it is Friday evening, September 9th, 2022. Six years ago on this night I was getting ready to go out to my favorite watering hole to say goodbye to one of our beloved bartenders and friends who was moving on after being there for years. Such a fun night and one I remember well. Well, up to a point that is. The drinks were flowing pretty steadily that night. But a lot of laughing and just good times to be had all around with many friends. Just as a night out should be.

Earlier that day, I had spent what would turn out to be my final day in the office at a job I absolutely loved. Of course I didn’t know it would be the last, but I’ll get to that later.

On Saturday, I woke up to go celebrate the 5th birthday of one of my bestest little buddies. I’ll fully admit that getting up that day was hard after being out the night before. It was also a hot day and I wasn’t feeling my best. I chalked it up to the mother of all hangovers and being with a whole bunch of kids at a birthday party on a rather warm day. But it was such a fun day and as per usual with this part of my extended family, the festivities went well into the evening. I still couldn’t shake the feeling that something wasn’t right, so very out of character for me, I left early to go home. 

On Sunday, September 11th, a day that in itself has a great deal of meaning for me (and of course all of us), I had tried to wake up to watch the memorial ceremonies at the NY memorial on TV. Something I do every year. But I wasn’t feeling well at all and sadly, slept through it. By the time I woke up later that day, I had spiked a super high fever and was incredibly sick.

I’m not someone who has ever had a great immune system. If I’m around anyone with the sniffles, I will contract a sinus infection, severe bronchitis and on occasion, pneumonia. After being around all the kids the day before, I thought maybe something had hit me, but I realized, I wasn’t feeling well before then, so no blaming the kids on this one. Next thought was that every year in late September-early October, for MANY years, I get a raging sinus infection and bronchitis like clockwork. Ok, so let’s chalk it up to that. Unfortunately it was a Sunday, I couldn’t get to the doctor, it wasn’t my first rodeo. I know what to do. So I tried to medicate myself, lots of tea and bedrest.

By Monday, I could hardly pick my head up. Went to the clinic since my regular dr was booked and they said it was pneumonia. Got the heavy meds, back to bed. 

Within days, it got worse. I couldn’t breathe properly at all so my pulmonologis thought my asthma, which I already had under control, had gotten worse and was now causing strain on my heart. So my she referred me to a cardiologist. They couldn’t find anything.

Within weeks I was walking with a cane. By January, I was walking with crutches. This to me, was the worst part of things. I’ve always been a huge walker. Before I got sick, I was walking up to 15 miles a week. Just a year earlier, I had trained hard for months for my first 5k going from almost 24 minutes a mile to my best time of 15 minutes 23 seconds a mile at race time, again, walking. Despite what a friend once said to me, it was not “a little walk thing”, it was an important bucket list item for me and one that I’m so grateful I had done. I had walked that race in pain with what had been diagnosed that year as spinal stenosis in my neck as well as knee issues…it was a very personal victory. So here I am a year later and walking wasn’t possible without an aid of some kind. It was starting to break me.

I had mentioned earlier that I had left my office that fateful Friday for the last time. I had tried my best to work from home as long as I could but when you can’t stay up for more than an hour at a time or sit up because it strained my breathing, it wasn’t possible to continue. I will be forever grateful to the folks there for trying to keep me on as long as they could until we all realized it just wasn’t possible for me to continue on any longer. It took a long time to find the job I was meant for. This was truly my favorite place to work. The best people, the most supportive environment and I actually looked forward to getting up each day to get into the office. How many people can say that? There were a lot of tears the day I went in to say goodbye and six years later, I still miss them terribly.

I have had issues with my health since I was a kid and my immune system failed me in many ways. I wish I could have noticed the signs of my future illness but seasonal issues, etc, just seemed to be the norm. Who knew it was leading up to something much larger.

By the time 2017 had started, I wasn’t doing any better. I was getting used to the crutches, my breathing still wasn’t getting better, but more symptoms were making their presence known. 

I was becoming confused, I would have days where I couldn’t get through a sentence because I couldn’t find the right words to say, the exhaustion was intense, my breathing was getting worse, and I was bounced from specialist to specialist and test to test.

As the weeks and months wore on, I was poked, prodded, hooked up to electric probes, given mental acuity tests and given meds by each doctor, (LOTS of meds by each doctor). I was gaining a ton of weight due to the medications and the lack of movement which was making it harder to hold myself on the crutches to walk as I had no strength to do so.

By the end of the year, I was on 32 different medications with only one diagnosis of severe fibromyalgia and not getting any better. It was a living nightmare.

Being me, I tried to make jokes about it. “I could glow in the dark now because of all the xrays, MRIs and ct scans!” “My arms better look like Schwartzanegger’s by the time this is over holding myself up on the crutches!” (crutches that to this day, I decorate for the seasons by the way) Anything to try and keep my own spirits up as well as alleviate any uncomfortable situations for my friends and family who still weren’t seeing me like this if I got to see them at all.

I was losing my mind being in the house so much. I’m an extremely social person, having been out almost every night before this happened and yet here I was on almost permanent bedrest and I was going into year two of it…still without another diagnosis.

In 2018 I decided to take matters into my own hands. I purged my system of ALL drugs. I just stopped taking them. I have massive issues with side effects from medications. I’m the 0.0001% of people you hear on all of those commercials for meds that have extreme effects. Tylenol makes me drowsy, I’m that sensitive to them. So when doctor after doctor was throwing more meds my way and not looking at the others I was on, it was taking its toll. I mentioned the weight gain earlier. I had gained over 50lbs on my 4’11” frame and I was tired of it. So with the exception of my rescue inhaler, I stopped them all.

Over the next several weeks and months, the weight began to come off. The dizziness and lightheadedness began to clear. I was starting to speak and write better. And most importantly, I began to walk better. Towards the end of 2018 early 2019, I was walking unaided and able to go out and take my beloved walks around my area again. 

Still, no other diagnosis.

Because of some blood tests regarding certain issues, I decided to change my diet as well. I became a vegetarian. Not an easy thing for me because I have a great number of food allergies, but I found a plan I could stick with and really enjoy. While certainly not for everyone, in my case, it  also helped my situation as well. I was able to continue my weight loss and be a bit more active again. Got to see the boys I consider to be my nephews more which was so important to me, celebrate the holidays and even go to my favorite stores, etc. Some of this may sound so blah to many of you, but after almost two full years on bedrest, you really look forward to the little things in life. Every…little…thing.

By the end of 2019, I was doing so much better that we had adopted a senior dog. This was life changing in so many ways. For all of us including him! We had never had a dog before, and at 13 he was so excited and happy that he had found his inner puppy. Being able to walk him meant everything to me.

In 2020, we started having some trouble here but it wasn’t me, it was my mother. She started having serious medical issues herself. She was in and out of the hospital and being in the city with the largest number of Covid cases in our state, it was a hard situation to have her in there. 

With her gone, it was up to me to take care of Murphy and being a senior dog, he needed to be walked a lot. It was starting to take its toll on me, but we do what we gotta do. I was chalking some things up to just being active more and really, we just wanted Mom home.

Christmas of 2020 was honestly the best we had in years. We kept saying that too. Mom and I spoiled each other, she surprised me with gifts I never could have imagined getting, the dog was in his glory having both of us home and all was right with the world. We had made it to Christmas which for a while, we didn’t think we would and it was just the most amazing time.

That night, Mom and Murphdog were sound asleep, I had been texting with a friend overnight comparing holidays and I was like a five year old playing with my new “toy”, a new laptop. Too excited to go to sleep, I stayed up til the wee hours trying to learn it and set it up. I had just said good night to my friend when less than 5 minutes later, it felt like someone shot me in the back with an arrow.

A sharp pain had hit me so hard I thought I was having a heart attack. As much as I wanted to, I didn’t want to scream and wake everyone up. I then felt the pain in the top of my stomach. I kept making sure my left side wasn’t going numb or having issues. Then it subsided a little and my first thought was, Christmas dinner didn’t sit right. That thought became even more prevalent when the next four hours consisted of my throwing up and worse. I was trying my best to call my mother and wake her up but I had no voice and was so weak she couldn’t hear me so when she did come out to see what was going on, she found me on the floor in the hallway between our rooms.

We called the ambulance and got me to the hospital. It turns out I was throwing gallstones into my pancreas and when they did the ultrasound, found my gallbladder was jam packed with the stones. After a few harrowing days in the hospital they scheduled suregery for me just a week later to have my gallbladder removed.

This began the next slide in my health. Unfortunately, it also began the slide in my mother’s health as well.

Just as I was recovering from my surgery, mom ended up in the hospital herself. It was another year of her in and out with some extended stays. Over that Summer, we had some long heat waves and I started having issues while walking Murphdog. Again, I didn’t think I was sliding back, just thought I hadn’t recouped properly or the heat was giving me problems, but when the super of our complex found me once leaning against a tree because I couldn’t walk anymore, I knew something was up.

Mom came home and it was my turn back at the doctor. Well, doctorS. 

Back to some specialists. But I made sure to pick and choose the ones I wanted to go to this time. I was actually glad to see some had either retired or left their respective practices so I got to start over with new doctors.

My new rheumatologist was amazing. First time in a long time I had gotten any kind of  diagnosis. Well, a couple of them. Osteoarthritis and future double hip replacement. Fabulous! I have a name for something!!

Then came my new neurologist. After spending two hours with me, (something NONE of my previous doctors had done) she came up with an illness that I had never heard of before: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. To this day, I cannot pronounce much of this verbally. But what a name. A NAME!

This doctor was fresh out of residency. Young. Up to date with the latest in neurological medicine. My old neurologist had been in the game a long time and while head of the department, was more ready for retirement than spending time with a patient. Don’t get me wrong, she was very nice and personally I liked her, but wanted to see someone different medically. So when she retired and I was referred to this new doctor I was excited. But I didn’t realize just HOW excited I’d be.

My new doctor had left me alone for a moment after she started to figure out what was going on with me. Came back with many pages printed out. She very calmly told me about this relatively new illness that had been discovered because of Covid. I sat and listened as I learned that it had been found during the research of the pandemic and (at that point) a possible vaccine for it. 

As she spoke, I started to cry horribly. After not knowing what was wrong with me for so long, someone was able to look me in the eye and tell me I wasn’t crazy. This wasn’t in my head. This was an illness and a very REAL illness and I had it. And you know what? I was HAPPY! 

I had been told (more than a few times mind you) that I needed to see a psychiatrist because it was all in my head. That I was getting older (I had only turned 50 in 2020). That it was menopause. That it was a fabrication to get attention. That I was lying. That none of my symptoms were real. THIS WAS SAID TO ME BY DOCTORS. And here’s the ironic part of it all…

Covid saved my life.

As someone who lives with depression, all of what was said to me could have easily taken me out. Not the meds, not the illnesses, not the losing my mind from solitude and bedrest…but the constant mental battle with people telling me, it wasn’t real.

I had a diagnosis, but couldn’t really do anything about it. Covid was still running strong. I was/am limited by my insurance and really there is nothing that I’ve found (so far) that can be done about this. So I’ve learned to do my own exercises to keep my mind sharp, I started an online business to keep me busy and I’m about to start a brand new one that I’m excited about and writing, always my go to, has saved me as well.

Since that doctor visit, I have since learned that I have the following and have added to previous illnesses, going in order from my head down:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Severe Fibromyalgia

Chronic Sinusitis

Spinal Stenosis

Herniated Discs

Osteoarthritis 

Bad Hips (to be replaced)

And most recently, because why not…

Stage 1 Ovarian Cancer.

Which brings us to 2022.

This year started off rocky for a number of reasons. Mom was getting sicker, back and forth in the hospital and she was finally able to get the surgery she so badly needed. (and should have had two years prior) To see her bounce back from it has been nothing short of amazing. It had gotten quite scary for a long time and this was the best thing that could have happened for her.

As she was recovering and getting better, I was getting worse. I couldn’t walk the dog anymore. While thankfully he was down to one walk a day, it was up to mom. But she was getting stronger and stronger and their walks were getting longer and longer. Therapeutic for both of them really and it was just incredible to watch.

As Summer was going on, the doggie, now 15 ½, was slowing down and I started having different symptoms. Due to some test results during a physical earlier in the year, we all thought it was urological. They found blood in my urine. So I went to the urologist. A great guy, he tried to do some tests on me but I had some pain while doing it and he said he didn’t think he was the guy to do this. He had a suspicion that I should see a urogynocologist. Never even heard of this specialty before! But while waiting for that appointment, I had other symptoms present and I asked my primary for a referral to a regular gynocologist. During that exam, I again had a great deal of pain during a test so he decided to do a hystoscopy under anethesia.

It was scheduled for July 15th. The weekend before, my mother and I had realized that our furball Murphy was in very bad shape and we’d have to make the ultimate decision to let him go that week. That Monday just before she made the appointment to let him go here at the house, I woke up to find that our bird who we’d had since she was a baby and was just 2 weeks shy of her 12th birthday had passed. Three days later we said goodbye to Murphdog. The next day, I had my biopsy.

Toughest week of my life and as Forrest Gump said, “that’s all I have to say about that.”

Two greuling weeks later, I found out that they discovered cancer cells in my ovaries and that I would have to see a surgeon.

Two weeks later, I was sitting in the office of a gynecological oncologist and two weeks later, I was having a full hysterectomy.

Another two weeks later, just yesterday, I learned that while I’m technically, “Stage 1”, they seemed to have gotten it all, but we are waiting for the pathologist to see if it went deeper than they could see.

My life in six years has come full circle once again, to this week.

There is obviously a great deal I have left out here. The fighting with doctors, the pain, the struggles and personal aggravation to speak or write or even think clearly. The defeat I feel about landing back on the crutches after being able to get off of them for a good amount of time. And of course the absolute and incredible ANGER I feel that all of this has happened to me. 

I have so much I need to get out and one day, probably at an inopportune time, it will finally come pouring out. But in the meantime I’ve been trying to disassociate myself from much of it, especially the last 8 weeks. It’s been too much in such a short amount of time. However I know, it will catch up with me.

So why am I telling you all of this?

Some of it is admittedly therapeutic writing. Some of it is because I want to get the message out there to NEVER give up. No matter what is happening to you, you MUST advocate for yourself!

I also wanted to write this to say, know what is happening to you. No one knows YOU like YOU. YOU know when something isn’t right. YOU know when you are not yourself. And NEVER stop fighting FOR YOU.

If you have gotten this far, I thank you. It is a story that continues to grow and one that I hope soon, will have more positivity to it than anything else. It is a story that more than anything, I hope turns around because frankly, I think I’m due for the good stuff to begin!

And so, I thank you dear reader for reading this and may we ALL be happy and healthy from this day forward.