Here goes… I am exhausted from “faking it”, no -not that… (Get your minds out of the GUTTER!) I am talking about faking a smile, and shocker, to everyone who’s asked “How are you?” over the past year, I’ve been lying when I said, “I am fine!”
I am not fine. Not. Even. Close.
I know I have touched on my mental health in a few blogs but I never really get into the specifics of my physical issues. I avoid talking about it or writing about it because I believe once it is in black and white, there is no going back. I know the power of words. I avidly practice “The Secret” and the Mind/Body connection, there is “magic” of speaking things into existence. Everything has energy, even words.
For every person I smile at and tell “I AM FINE”, I am attempting to put the power of those words into the Universe!
Having a chronic illness sucks. But you know what sucks even more? Hiding a chronic illness. Fighting disease is not only physically exhausting but emotionally and mentally exhausting too.
I am embarrassed to say that I am sick. I know that it sounds ridiculous because it is entirely out of my control. I didn’t do this to myself, I wasn’t abusing my body and this was payback. I am just one of the many people who battle chronic illness. At just 32 years young, I was diagnosed with an “Auto-Immune Disease” that I will need to somehow learn to coexist with FOR THE REST OF MY LIFE.
Over the last 8 years I have had times where I am in “full flare-up” which is combatted with a series of oral steroids, disease-modifying antirheumatic drugs, epidurals, cortisol steroid injections into my joints (most recently knees, hips, pelvis, and lower back) and endured painful aspirations (drainage of fluid in my joints with giant needles). I live on a daily cocktail of medications that have scary side effects.
Besides doing things the right way according to “western medicine”, I have gone the old fashioned route as well, using the mind/body connection, yoga, and meditation. I have removed everything from my diet that causes inflammation. Yes, that means I haven’t had a drink in years, I became a vegetarian, I try to avoid anything with sugar, white flour, and most recently stopped the little dairy (cheese) that I ate, in the hopes that would help. I live on a diet of water, nut products, probiotics, legumes and LOTS of vegetables. It hasn’t changed much in regards to my pain and discomfort, but I know that these are all good things to avoid regardless.
There have been periods of “remission” that were anywhere from 6 months long to almost 2 years long! I love those times. Even if it meant I was able to live a semi-normal life. I say “semi-normal” because I would wake up every day wondering, “is today the last day I will feel good?” When I am in good physical health I live agonizing mental anxiety. I am afraid of going to public places, where there are rampant germs. I am scared of not getting enough sleep and getting too much sleep. I worry that because I feel good, I am eating too much, so then I start eating too little. I refuse to travel far and explore unknown places. All it takes is a common cold and I could be in full flare up before the end of the day and that could last for years. I torment myself and anyone around me.
I see doctors on a monthly basis to monitor everything from my blood pressure to my inflammation levels. Just this past July my doctor saw me and said “looks like this is a well-baby visit” and I was ecstatic that I had been flare-up free for about a year. Then August, I was experiencing a weird pain in my lower body and knew something was wrong. From that day forward we have been in a struggle to figure out exactly what changed to cause such a drastic decline. I went from manageable pain to a weird numbing pain, to my legs not getting the signal to move when I am walking.
Like most people with “invisible illness” (which is hardly invisible), I always try to figure out the exact moment I “got sick”. I can vividly remember one day in August. I was in my hammock and I had to go inside because the mosquitos were bad. I had gotten several mosquito bites and I was covered in these painful welts. The next day, I woke up, the welts were bruises and I had a fever. Within days I was lethargic and I made the first of many appointments to see my posse of doctors.
If you’ve ever had the flu you know what I mean when I say I had “flu-like” symptoms. From the tests they ran, all of my “markers” were high. It was yet another dreaded “flare up”.
Whatever happened, my body has been in war with itself since. My arthritis causes pretty rapid degeneration of my bones and muscles, so when I started to shrink, I thought it was just another curse of this disease.
In November I turned 40 and I managed to smile my way through a lovely party my sister threw me, but the Holiday Season I couldn’t fake it anymore. My family ended up vacationing without me because I was too sick to travel and I never want to hold them back because of my illness. I missed them tremendously, however, I was able to rest and I needed it.
I know this isn’t the typical SPICE OF SUBURBIA blog, and I am sorry. I am just so pissed. It was supposed to be an exciting year of transition in my life, turning 40, sending my daughter into her senior year of High School, taking college tours and preparing for Prom, Graduation, and Vacation… Even when I fight through the pain and force myself to be present, my agony is apparent and what should be about everyone else turns into the “Dee-Dee Show”…
I am a literal burden on people. It is hard not to cry 24 hours a day, 7 days a week. (Quite the PITY PARTY I am throwing myself today!) I am grateful every single day that I have a job, my work forces me to be present. After 15 years at this company, I feel like I am held to a certain standard which I have set and they expect nothing less. So, every morning, Monday to Friday, I get up, clean up, fix myself to be presentable (some days are better than others) and I fight the agonizing pain so I can get through the doors and do what I know I am great at, and it gives me a sense of accomplishment. I feel like I am failing everywhere else but at work.
So, let’s talk about “R A”. If you watch TV, then you have heard of my illness because there are commercials on every channel selling the amazing drugs that will give people like me their lives back. You know, the grandma who couldn’t knit anymore, until she took (insert unpronounceable medicine name) and now she knit the entire family matching sweaters for Christmas. The father who couldn’t throw a ball with his son anymore, and then he took (insert unpronounceable medicine name) and now he is the pitcher for the Yankees. I have tried most of them, I still haven’t started knitting or picked up a ball.
“Do you suffer from Rheumatoid Arthritis? You don’t have to suffer anymore! Regain your life with (insert unpronounceable medicine name) once daily” then, the deep dark voice comes in the background barely audible over the joyous music “Side effects include nausea, violent mood swings, raging headaches, itchy genitals, pulsating eye sockets, anal leakage, penile shrinkage, hypothermia, ringing in the ears, hairy swollen tongue, constant fatigue, excessive weight gain, foul foot odor, itchy nipples, rapid tooth decay and in some cases DEATH.”
Makes you want to run to the pharmacy and grab a bottle, AM I RIGHT?
So, besides feeling like shit – the medicine I take to “help” me feel better, just adds new symptoms.
Every single day I am grateful for what health I have, for the support system I have and for the health insurance I have. I know that there are people who are dealt a much worse hand than I have, and they cope. I see people with much worse physical issues at the Rehab Center and I feel guilty for not being stronger or fighting harder because it could be so much worse. I actually said those words to my doctor one day, and he is so brilliant and kind, he just said “Only YOU have to live in your body” he pointed at me “only YOU can feel THIS pain, it is ok to have empathy for yourself”.
I know, this might not feel great to read but DAMN it feels good to write… A Dear John letter to my disease. For some reason, I have some vindication saying this today. So, please, indulge me.
Here is where I stand today. Funny I say “stand” when I cannot even stand. I have been in a FULL Flare-Up since August 2018. I have had every treatment possible (for me) to this point. I have managed to get my blood pressure under control with a new course of medicine, I have lost over 60 pounds due to lack of appetite. This disease has caused some rapid degeneration of my muscle and bone so I am an inch shorter than I was a year ago. I wear one regular shoe and one shoe with a 1” lift built onto the bottom of it, aka my “douche bag shoes”. Then I have my “apparatus” which is a back brace that has several straps and what resembles the back of an office chair aka my “hero in a half shell, turtle power” look. I can stand and almost walk for about 30 seconds, after that, if I am lucky I will ease into a seated/laying position. If I am not so lucky my lower body cramps up and I fall. When I say I fall, I want you to imagine a marionette when all the strings are cut. I just fall. People have found me on the pavement and wondered how I “tripped” out of the thin air, but most often I end up on the kitchen floor, scarring my child for life.
I have a new method I actually learned watching a show on TLC where people suffering from obesity prepare for Weight Loss Surgery, I see quite a few of these people SITTING and COOKING. I never thought to do that, so I picked up a few tips from the show and now, I scoot around the kitchen in my folding chair and manage to make meals every night. (I am very particular about the food my family eats.) I try to keep my house clean in between actual housekeeper’s visits, so I can be found sitting and using the Swiffer Wet Jet on any given day or sitting the floor in the laundry room to fold clothes. I refuse to let my family do things that are inherently my things. It is part of my programming and not their fault.
I am very “handi-capable”, but that isn’t good enough for this 40-year-old. I need to be ABLE-BODIED, so this week, I am taking a huge step in my battle. Surgery. By the time you read this blog, I will have had spinal surgery. This is to combat a deformation of my spine that has occurred from years of degeneration and disease. This has caused a lot of my pain and discomfort and is the primarily the reason why I cannot walk. I will spend a couple of days there for observation and then I will be sent to rehabilitate at home. I am still processing all of this, it literally happened so fast. I am relieved that my main goal having mobility of my legs will be met but I am being realistic as well. This is a quality of life surgery, not a cure. I was reminded of that and I will keep my expectations realistic.
Wow that felt great! Today’s blog was cathartic for me but more than that… It gives me an opportunity to say a few things that have been weighing on me heavily. So, here goes…
I apologize to all of the people I have smiled at and said “I am fine” when it is obvious I am clearly not fine at all. Thank you for not pushing for more explanations and letting me say what I NEEDED to say despite it being a lie.
I really want to show appreciation to The Howard Stern Show, because even on my WORST DAYS, I can be found crying real tears of laughter. I feel like they are my HAPPY PILL and you cannot understand how important it is to have something in your life to distract you and numb the pain for a few hours.
I want to say to my second family, the people I work with… I know spending 40 hours a week with me right now isn’t easy – but you keep me going. Especially Nikki who has become an Uber, when I can’t drive, a personal shopper when I need things, a gym partner for Chloe when I can’t move, she is stepping in for me everywhere. She is the things I miss most about MYSELF. Of course, the owners and coworkers who have watched me come and go for countless doctors’ appointments recently, I will be back and I will be better!
This is a love letter to my Doctors, Nurses, the Administrators, and Pharmacists. (everyone at Kessler Rehab in West Orange, the amazing Dr. Cole, Dr. Eraiba, neurosurgeon Dr. Heary, Sue, Miss Ruthie and Shoppers Pharmacy in Pompton Lakes) These are the people who ALWAYS go beyond their “job description” to help me find the silver lining. Each of them, taking the time to explain things in detail and tell me that I will get through it. They always make things seem manageable, even when I am absolutely unbearable.
My Blog is a shout out to the Fellows (Doctors) who are in the room with me each and every Doctors visit. I have reached for your hands through painful procedures and I cried to you one by one as you cycle out. Your promise to continue to look for cures and ways to help treat people like me give me so much hope.
Now, my friends… I know you love me, even though I cancel or leave early constantly. Your calls and texts remind me how much I am loved. You all keep me involved and I appreciate it. Too many of you to name but you know who you are…
Last, not least, my Family. Not only the ones I live with, because they are my heart and I have told them many times I am sorry to put them through this, despite them telling me to NOT say that… But seriously, my mom, my dad, my sister, and little ones, Peepa, my aunts and uncles, and of course my loving in-laws – I wish I could explain how much I love and appreciate you.
One thing about people who are usually the caretakers and not used to being the ones cared for… THIS IS HARD… What can I say to the people who are hurting WITH ME? I am sorry? If I could take away the pain you feel when you see me like this, I would in a heartbeat. I want you all to know I am doing everything in my power to be the Dee-Dee that you know and love, the rest is out of my hands. Seeing you all worrying and suffering beside me is the hardest part of it all. BUT you are all amazing… EACH AND EVERY ONE OF YOU!
Now, I ask my friends at The Daily Feels to keep me in your thoughts… If you pray, I wouldn’t mind some of those prayers!!! Meditate on me, send me your healing vibes and know that you are the ones who keep me writing, my first love is writing and this is my outlet. Today, having an opportunity to say these words and get this off my chest was a relief. I promise to return next month and I already have something in mind to counter this heavy blog! So, I will see you then! Cheers to health!
Dee-Dee Kanhai, aka “The Spice of Suburbia”, was a big city girl for 25 years who was transplanted to the Suburbs of Northern New Jersey. This relocation led to her “undoing” and with that, the discovery of her true self. Besides being a wife and mother to a teenage daughter and toy Chihuahua, Dee-Dee works in finance and owns a small Etsy Shop @LoveTheUndoing, where she sells heart-made jewelry, crystals, and other whimsical crafts. Dee-Dee is a student of life, teacher of meditation, practicing yogi and a mystical moon child.