How Jeni's Chronic Illness Changed Her Life
By Jeni | @iamjenilove | May17, 2018
How Jeni's Chronic Illness Changed Her Life
One, two, three, four, five…oh...Hey! Hi there! Sorry, I was counting how many chronic illnesses I’ve been diagnosed with in the last ten years! Ummm, lets see, where was I?
Oh, right, five, six, seven, eight, nine….
That’s the current number.
….yup, as in, there’s always room for more.
Because I’m always expecting another one to pop up with each passing year, blood test and doctor appointment. Such is the life of auto-immune disease and living with chronic illnesses. Like potato chips, you can’t have just one. Oh yeah. I just said that. Sorry…not sorry…
Sort of…because if you’re a chronic illness warrior, you get it, and if you’re not….
....well, you quite possibly will become one. It’s almost necessary. For survival and all.
Where was I?
Nine. Nine. Nine. Nine. Nine. Nine. Nine. Nine. Nine.
That’s what nine looks like. Or, what a German Mother might yell at her kids when they are driving her bananas, but that would be nein.
*And I know you just counted to make sure there were…nine nines there*
Checking me. That’s good! Shows you’re paying attention. Which, let’s face it, is a daily struggle when living with chronic illness, because, brain fog. Relate?
Oh my gurd! Squirrel!
This journey of living chronic really began for me in 2007, not long after my Mom passed away. I wasn’t officially diagnosed until March of 2008. That was the year I was diagnosed with Graves Disease and told by two doctors that they couldn’t believe I was sitting in front of them instead of the alternative.
That would be dead.
That’s right. They said it.
I wasn’t fazed though. I thought I could beat it. Little did I know that my whole life would be changing dramatically.
For six years I worked closely with an Endocrinologist in NYC who was amazing and attentive. That would be Dr. Noel Maclaren of Bioseek. If you live anywhere near NYC, or are willing to travel, and need a quality, caring and cutting edge doctor, call him. Immediately! And tell him that I referred you (DM for my info)!
There are very few options for treating Graves Disease. When I say few, I really mean three. None of which are a cure, since, get this, there are no cures for AI (auto-immune) diseases. Lucky us!
Treatments for Graves Disease are: RAI 131 (Radio-active iodine treatment) – think nuclear waste – partial or total thyroidectomy (surgery) or block and replace therapy (typically used in Europe and Japan) which is not commonly practiced in the states.
RAI was not even an option for me because I wasn’t about to intentionally let someone in a white suit with tongs hand me a vial and instruct me to wait until they left the room before opening it and ingesting what was in the tube. Besides the fact that RAI almost always isn’t effective the first time. Pass. Good thing Dr. Maclaren felt the same way I did.
Nope. Not gonna do it.
I was determined to keep my thyroid and heal it and no one was going to stop me. Ironically, as you’ll read later, my thyroid stopped me. But, squirrel.
So, block and replace therapy it was.
It took a few years, the loss of my hair, extreme weight loss, uncontrollable anxiety and emotions, nutrient malabsorption, random paralysis like symptoms, temperature intolerance and crippling fatigue before I saw any kind of improvement that I could live with, for a little while anyway.
But my so called “normal” life…riiiggghhhttt! That was something that was never coming back.
I had a new normal that would keep on changing, just when I thought I had a grip on things.
After a couple of years, I started to undergo thyroid ultrasounds because I had a goiter the size of a boulder you might find in the Grand Canyon, protruding from the right side of my neck.
Sexy, I know. Try to control yourself!
Originally, the reports were clean. Until 2011. That’s when the “alien baby” was discovered. A couple years went by, I lost my health insurance coverage due to a divorce, did I mention that chronic illness changes your life and affects your relationships…ugh…squirrel! In 2013, once I had insurance coverage again, the ultrasounds confirmed that the “alien baby” was still there, but larger. Still, not big enough to biopsy by fine needle aspiration, but big enough to warrant more frequent ultrasounds.
Later in that same year I would get involved with an old high school sweetheart, for the third time (because, clearly, I didn’t learn my lesson the first and second time) and that episode played a huge role in the further decline of my health, the development of living with long term exposure to chronic stress and new multiple AI diseases.
In 2014, I was commuting between NY and DC, working two jobs in both cities and navigating the new old relationship. I experienced my first seizure while driving on the NJ turnpike. To say I was scared would be an understatement. I would have several more seizures before reaching out to my specialist in NYC and ultimately following up in office with him in June of 2014. After an exhausting battery of blood work and in-office visits it was determined that I would have to choose between living or not living.
Swell! Everything I had been fighting to avoid was coming true.
I opted for the surgery and chose a very experienced doctor in Arlington, VA where I was living and basking in the relationship I thought was my “ever after”.
It would be several months of intense medications to “calm” my system and prep me for surgery, which the doctor was not entirely happy about based on the instability of my health, but agreed that it was life or death. In this unstable space, my relationship would suffer. The side effects of the medications, the crippling anxiety, the emotional insecurities that were beginning to take over my sanity, all were damaging me and how I was functioning in the relationship. The reality is, he wasn’t prepared to have a relationship with anyone, let alone someone with chronic illness. And I wasn’t prepared for how my erratic behavior would take over like a split personality.
Let me back it up here.
So, initially, we had planned the surgery for September, but had to push off for late October since my body was “uncooperative” [can I get an eye roll here?] and the surgeon didn’t want to take any chances. It was absolute agony for me! I was restricted in exercise, on a ton of medications and completely emotionally unhinged. This cocktail was a HUGE negative on my relationship and played a major part in our eventual separation, which, post-surgery pushed me to a place that made me even more sick before the surgery [this is where the broken-hearted emoji comes in to play] and leading me towards a fate I could have never anticipated.
Remember when I said he wasn’t ready to have a relationship?
So, while he said the right things like, “I’ll heal you with my love”, the reality was that the minute I went under for surgery he left the hospital for the entire procedure and went to the gym, food shopping, watched some tv and relaxed, while my family sat in the waiting room from beginning to end. It wasn’t until 30 minutes before I was being transported to my private room after being in recovery for several hours longer than anticipated that he returned to the hospital. We’re talking almost seven hours of surgery and recovery. That was a major sign that the relationship was in Shitsville.
The first couple weeks after the procedure, when I finally got home to recover, were quiet and he was attentive, but by Thanksgiving, he was mentally and emotionally checked out and he told me that he didn’t want me coming with him to TX for Christmas to see his kids. I diverted to Florida to be with friends, where I knew I could ugly cry and make tough decisions, because I was way too embarrassed to go home to New York and face my family.
And so began the downward spiral….
….and the beginning of a long period of darkness that would separate me from my faith, my family, my friends and myself, only I didn’t know it…yet.
Eight weeks after major surgery to remove my diseased thyroid, and ultimately revealing I had been living with papillary thyroid cancer (remember that little “alien baby”? Surprise!) my relationship with the man I was convinced God had created me for was gearing up for a pretty serious and emotional break-up, leaving me in an emotional wreckage that would paralyze me for years to come.
I returned home from Florida on New Year’s Eve eve and ended our relationship. I would stay until February to tie up loose ends and pack my things. With my tail between my legs and a shattered heart I went back to NY to lick my wounds, see doctors and try to put together a plan to move forward as best I could, post-surgery and post break-up.
I stayed in NY for (50) days. I could barely cover my bills, pay for medications and keep up with medical expenses. My storage unit was sold and the items inside it sold off at auction because I couldn’t afford the rent. I was devastated. All that was left was what I had fit in my Volkswagen and brought back to NY with me. So, with those items and $250 to my name, I moved to Florida in 2015 in search of hope, healing and eventually, a better life.
From the moment that my relationship ended, I questioned my ability to make cohesive decisions in my relationships, both work and personal, questioned my sexuality. Was I attractive enough for anyone at this point? I questioned my ability to emotionally care for another person, much less myself. I looked in the mirror and all I could see was ugliness, illness, instability, emotional messiness, and weakness.
Who in their right fucking mind would want that?
Who would want me?
I was ended…
…I couldn’t find a way to love myself…
…and over time…I began to withdraw.
My relationship with God was destroyed.
My relationships with family members were strained.
My belief system…destroyed…
I’m not in any way ashamed to admit that I was depressed and suicidal.
I wanted death.
I wished for death.
I planned my death.
It consumed me.
All I wanted was to leave this world.
To leave the pain of a destroyed love.
To leave the pain and challenges of living with chronic illness.
So, I made choices.
I cut everyone out of my life that I loved.
To save them.
To remove them from my own self harm.
To protect them.
Because it was all the love I had left….
…for them, not for me.
I was empty.
It makes me ache, right now, remembering that pain and the desire to no longer exist…
…but something amazing happened…
I was saved!
Saved by the reckless love of God.
Saved by the reckless love of the few people who chose to never give up on me.
Saved by a grace that I can’t see, but I can feel.
Saved by Him.
By His love.
How lucky am I?
A broken, sad, empty woman.
By the grace of God and His Angels on this earth.
I count it all joy.
The days that are good. The days that are challenging. The days that I want to quit.
I remind myself that each diagnosis is a gift from Him.
A gift that allows me to meet the needs of those who are scared, unsure, alone, questioning.
I am an advocate.
I am a voice.
I am His voice.
I am His love.
I am here for the broken.
I am here for the lost.
I am here for the lonely.
My desire to care for others is what drives me to care for myself and be the hope others need to draw from when they can’t hold themselves up.
To be the light.
Be the energy.
It is my goal to make sure that NO ONE is left behind.
That NO ONE is left alone.
That NO ONE is scared.
My love tank is full. My love is endless.
I am driven by God to answer my purpose of fulfilling the needs of others living with chronic illness.
I will be your voice when you don’t have one.
I will be the strength you draw on when you feel you have none left.
I will be the voice to ask the questions you need answers to.
I will be there for YOU.
Because I believe that no one should ever feel left alone.
Because I love you, like He loves you.
And I am not complete…
In the last couple of years, I have had some set-backs, but I never let those set-backs define me or get in the way of my purpose anymore! Living with chronic illness has changed my life, for the better. The losses I experienced, the crippling emotional pain I went through, it all prepared me for the work I am doing going forward. I wouldn’t change any of it. My illnesses are the gifts that God chose for me so I can be there for you.
I will continue to advocate. I will continue to give of myself.
Because that is what God wants me to do.
So, if you ever need someone to reach out to, know that I am always here.
That I am waiting for you to reach out to me.
That I will answer your call.
No matter what.
That together, WE will always overcome whatever OUR challenges are.
Always know that you ARE ENOUGH!
Now, let’s go kick the crap out of chronic illness!
Jeni Love lives in Jacksonville, FL with her awesome chiwahwah Tippy, who makes frequent appearances on her Instagram stories. She is a personal trainer and wellness coach, specializing in one-on-one and group training and coaching clients through emotional and physical obstacles.