How to Live with a Chronic Illness

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Ok. Truth time. Confession time. I have a chronic illness. I have CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. In simple terms, my body is attacking my nerves. Think of your nerves like an old school telephone cord (you know the curly ones you used to stretch to talk to your friend inside your closet for privacy). And the plastic coating on top of the cord is your myelin. My body is attacking that and therefore, hurting my nerves. This results in pain, weakness, fatigue, tingling, and a whole bunch of other stuff you don’t even wanna know.

I was diagnosed at the age of 24. It had been a couple of years with symptoms that my doctors just could not figure out. I graduated college, I immediately went into working full time as a retail store manager for Abercrombie & Fitch. It was during a floor set that I was kneeling down to fold jeans on a table that I realized I couldn’t stand up without being forced to look like an old woman. My legs just felt so weak. I had trouble opening a water bottle. My vision was starting to decrease and so I got cheap reader glasses from Walgreens when auditing the jean wall, I couldn’t read the sizes that needed to be stacked in order. When I was ringing customers up, I couldn’t read the SKU numbers on the tag. (This was a cause of my optic nerve being affected as well).

Since I was a little girl, I had been active. I took dance – tap, jazz and ballet. I led a normal, healthy, active childhood. High school and college seemed normal as well. I had asthma which was being maintained by an inhaler, I had high cholesterol, thanks to genes, but was taking medication for it and was on the right track. But it wasn’t until a few months after I graduated college that I started to notice severe symptoms.

My primary care doctor told me to see a doctor that specializes in cholesterol, an endocrinologist. She took my labs and suggested I come off my statins for a few months to see if my weak symptoms subsided. This only wasted more time and more damage to my nerves, because my symptoms only got worse. When she was stumped, she sent me to a neurologist.

I was referred to one of the best neurologists that St. Louis, MO had to offer at the time. He did a full work up, and I mean FULL work up, complete with an EMG, ultrasounds, even into a research study. It was September 26, 2010 that I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy. You can read more about it HERE. It is impossible to diagnose a cause. It could be a flu shot I had senior year in college. It could be a virus I caught. There’s no way to know, so no, I don’t blame anyone or anything I did. It was just what God handed me on my plate.

After the initial shock and also, relief, of finally being diagnosed and figuring out what it was that was happening to my body, it was time to be proactive and FIGHT. I had to fight to be strong again. I had to fight for my life, to get back to a normal life. I was living with the man of my dreams, waiting to get married, waiting to have kids, but until we could get this disease under control, everything went on pause. We pushed our wedding back a full year because of the treatments and infusions.

One very vivid memory I have was I was so weak that I couldn’t undo my jean buttons to go pee at work.

I couldn’t freaking pee.

My hands were so freaking weak that I couldn’t undo my jeans and zipper to go pee. How’s that for vulnerable, asking an associate to help you go to the bathroom?

Treatments were effective, but too much damage had been done to my nerves and peripheral nervous system. The thing about CIDP is that because it can be hard to diagnose and take awhile for symptoms to really effect you, it’s hard to reverse the damage that’s already been done.

I remember being in the hospital getting a week’s dose of IVIG, planning our wedding with my mom, and figuring out if I could walk down the aisle, if it was too long to walk, if it had stairs, we couldn’t do it. If the chairs were too low, I wouldn’t be able to get up. If the bathrooms didn’t have handicap or tall enough toilets, it was a no. We put EVERYTHING on hold to allow my body time to heal and hopefully get back to my new normal, which we found out is my plateau.

But growing up as a dancer, I told myself I was going to dance at my own wedding. I was going to be strong enough to dance with my new husband, and celebrate with all of our family and loved ones. And I didn’t want to be some smaller version of myself in a wheelchair or worse.

Thanks to an act of God, my treatments did start working. And I was able to continue working as a store manager, and leading floor sets and lifting shelves, piles of t-shirts to fold, or stocking shipment boxes full of jeans (that’s REALLY heavy, if you’re wondering). And running around still in my flip flops managing my team and even managed to get a potential job offer at home office in Columbus, Ohio. I was on the right track.

And we got married. And I danced with my husband. And our entrance song as husband and wife was “Forever” by Chris Brown, and I will never forget how good it felt to move my feet to the beat of the song as we were cheered on by all of our family and friends that have known us for so long, through thick and thin.

Fast forward 15 months, and we were welcomed with our beautiful little boy, Joseph. The pregnancy took a toll on me, and my neurologist advised that I no longer was able to work at 7 months, and was so surprised I had put up with my job as long as I had. I guess I just didn’t want anyone to see the weakness, didn’t want anyone to think less of me, or look down on me and see me as inferior. But when I slipped and fell and almost hurt my baby, I knew I had to take a step back. I couldn’t put me or my baby at risk for the sake of my stubbornness. My last day at my store was a home office visit and the most important people visiting my store to get ready for the holidays and make sure everything was running smoothly. The prep that week for this visit alone almost killed me. But I kept going. I did it with grace (I’d like to think). I did it without complaining, because what was the point? Who would understand? So I held it in.

And so, at 7 months pregnant, I was deemed disabled. I went through the process of getting approved for short term disability, then long term disability. Thank goodness for great health benefits from my employer, because I don’t know how I would have navigated this whole process without them. (I owe everything to Abercrombie, honestly. They truly care about their employees.)

When my son was a week old, my weakness got so bad that I almost dropped him just changing his diaper. My hands and arms were just so weak. And he was only 7 pounds. This was my lowest point. I had never been this weak before. This was a huge relapse. A huge turning point. A huge low. I needed my husband to click my deodorant and put it on. I needed him to tie my hair in a pony tail. I needed help zipping my jacket, tying my shoes. Even zipping up Joseph’s onesies. Button onesies were out of the question. This was a serious relapse and it happened FAST.

Thankfully to more treatments and missing pretty much the first month of my son’s life, I was released from the hospital on his 1 month birthday. And the only thing I wanted to do was hold him and take his 1 month photos. And I COULD. I WAS STRONG ENOUGH TO HOLD HIM.

Words can not describe the joy in the picture above. My husband, John, was behind the camera, after taking care of Joey pretty much his whole first month being on this planet. Seeing my strength come back from almost nothing is a miracle in itself. And it was this moment that I knew I would fight for this strength for the rest of my life. The joy in this strength. To know how far I had come, in the past month especially. To see your body become your biggest enemy, to have your strength taken from you in the blink of an eye. Not being able to take care of yourself, let alone a brand new baby who counts on you for everything, you are his lifeline. It is something I can’t even put into words, I can’t even find the words right now to tell you how this felt. But this one month photo was so worth celebrating and will forever be engrained in my mind.

Now, 9 years later, we have welcomed another sweet boy, Maxwell, into this world in 2016.

And my body has had ups and downs this whole time. There were weeks that I was in the hospital and unable to hold my babies, unable to sleep in my own bed, because I was in the hospital getting treatment.

But I think going through this and the relapses, the flare ups, the highs, the lows, the good days, the bad days…it makes me the person I am today. It has taught me to not take one day for granted. Every good day I enjoy to the best that I am capable. And sometimes I overdo it. So there are more bad days that follow. But life is all about the ups and downs and celebrating the ups and learning from the lows.

As a mom of a 9 and 6 year old now, there is not one thing I can say to new moms with chronic illness. It needs to be a whole conversation, a whole shoulder to cry on, a whole confession of your deepest and darkest secrets, fears and worries.

Could I relapse again? Absolutely. Do I know if getting a cold or flu, or COVID, could make me relapse? No idea. Do I try to live my life to the fullest as best as I can? Absolutely. This requires naps. Rest. Cuddles on the couch. Snuggles in bed. Early bedtimes. Lots of coffee. Lots of medicine. And non-buttoned pants. Leggings are my everyday attire. I have so much to give. I have so much to offer. I have my college education. I am a smart woman. I was a store manager for a popular retailer with perfect looking people and I had to try to attain that ideal. I led a team of over 40 people. I know what pressure is. I know how to manage my time. I know how to prioritize. Even better now because of my illness.

CIDP has given me a new outlook on life. It has taught me to not take what I have for granted. The mundane, boring life is what I WANT. I don’t want anything more than just a regular, boring, predictable life. Going to the grocery store is a huge outing for me. Going to the park is a day’s work. Starting this blog is huge for me. Typing this article in and of itself is a major task. Not just the mental capacity to think of what to say, but to type it, my fingers are moving, I am using what God has given me and not letting it wilt away. I don’t take my strength for granted. Every day I swing my feet over from the bed down to the floor, and I am forever grateful that God has gifted me another day to live.

Being chronically ill is a whole new ballgame. Being a mom who is chronically ill has a VIP section. You are VIP, Mama, if you fall in this category. We need to be friends. We can be each other’s shoulders to cry on. We deserve all the applause. And it’s okay to celebrate that!

I don’t have all the answers. I am navigating this every day just like you. But I really try to stay positive and look at the upsides. I find laughter in a lot of situations. I HAVE to laugh everyday. I can’t take anything too seriously, because I know what REALLY SERIOUS is like.

I started this blog to connect with other like-minded moms out there who may be feeling the same as me. As I’m getting more confident writing in this space, I see myself peeling another layer and being more vulnerable, and I hope you join me along in this journey. I may not be able to work full time and support my family like I imagined I would my whole life as a daughter of a single mom who taught me what a work ethic was and to work hard for what you have. Nothing is handed to you worth fighting for. But I believe this blog will go places, will reach people it needs to, will help those in the same boat as me and provide a little escape for those who need it.

This is a no fluff, no ads, no affiliate links, nothing sponsored, just a pure down and dirty blog post. And I hope you stayed long enough to read the whole thing. And for that, I thank you. Please let me know if you relate to this at all in the comments below, send me an email jacqueline@onetopknotmama.com, find me on social @onetopknotmama,

It’s good to have you here, I hope you enjoy me on this ride!

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