Sneaky Little Bastard- When An Autoimmune Disease Rears Its Ugly Head

This July I turned 40, and the entire month was a dream come true. Actually, let me rephrase that. The entire summer was a dream come true. We packed in so much with the kids, and no doubt, spent more dinero than ever before. But life’s about memories, not money, so I’m honestly not fretting as much about the expenditure part. With turning 40 comes an awareness of sorts. Looking back at your experiences and choices reflectively, as well as peering out toward the future wondering what it may hold.

At my 40th surprise party, I had the most interesting conversation with my friend’s husband. He mentioned how and why the 40’s are our absolute best years in life, and to acknowledge this, because my 50th would feel very different. He had a smart hypothesis for this-mainly being that our health will surely begin to decline at the age of 50, and without a doubt our bodies will not be able to work in the same reliable ways. It was truly an enlightening and lovely conversation and I’m surely not doing it the justice it deserves here in this blog post. He struck a very poignant chord when he mentioned the importance of good health. We cannot partake in and experience much of anything, when we’re not feeling well. Fortunately, in my 39 years on this planet, I hadn’t had to think much about my health, and as a result, completely took it for granted.

Not only did I take it for granted, I think I tempted the universe with the hashtag I posted the day after my birthday in 2018: “whatyougot39?” Because the universe was like: You ’bout to find out!

Just a few hours later, on my son’s birthday, I would come down with an infection that would last two weeks, with a few days of health in between before the same illness struck again for another 2 weeks. I became suddenly ill with what felt like a UTI. But it felt stronger and more painful than any previous UTI I had ever had. After many trips to the same doctor and being put on a 3 day dose of a weak antibiotic, my sickness became a raging inferno of pain in the kidney region. With no improvement after 10 days, the doctor refused to change my prescription to something stronger. She said this was her decision simply because nothing was showing up on my urine culture (this is common with people with IC). She also thought I might have kidney stones or appendicitis. After passing out at the radiology center and being told she would not put me on a different medication, I went to someone else who immediately put me on a much stronger antibiotic, and smartly told me to see a urologist stat.

Everyone knows that 10 days of a UTI left to its own devices is like giving it a free pass to cuddle right up to your kidneys and then smother them. It was no surprise that I had a kidney infection. But what was the cause of this? How did it come on so suddenly and with such fervor? The urologist did a cystoscopy, and confirmed my bladder was quite inflamed. He told me to finish my meds, cut out coffee for one week, and call him if I began to feel better after taking a break from coffee.

One week later, I felt back to normal thanks to the stronger meds and ditching of my fave drink. The doctor said, I’m willing to bet you have IC (interstitial cystitis). I’m going to send you a sheet full of what you cannot eat because these foods cause what’s called a “flare up”.

“OK, great! How do we cure this?” So cutely positive I was. P.S. there isn’t a cure.

What is interstitial cystitis? This is an inflammatory disease that seems to go after the mucous membranes, and for whatever reason mainly attacks the bladder. The lining in the bladder is compromised thus allowing toxins to seep in. It is set ablaze when the body is fighting off an infection, or sometimes, when I’ve simply put the wrong food or drink in my mouth.

Last fall, I was afraid to eat much of anything. I cut out all of my favorite things: coffee, salsa, fruit, wine, seltzer, juice, tomatoes, pizza, chocolate, artificial sweeteners, and basically anything that has acid or caffeine in it. While I missed my chips and salsa and coffee SO MUCH, I felt so good and began to realize I could contribute in a huge way to my own health by watching my diet. That was worth a lot.

It also gave “cheating” on my diet a whole new meaning. It meant feeling like I had the flu the next day and sometimes for up to a full week. Inflammation in my arms and legs, my neck, and my bladder. It meant feeling so tired I could not keep my eyes open. Instead of planning what fun activity I could be doing with my family, I was more often than not daydreaming about sleeping, so I could avoid feeling any kind of pain. This is why I was thankful I only had a couple of these flare ups since I had been diagnosed last August.

Also, imagine what parenting with a hangover feels like, except it’s the worst hangover you’ve ever had, and it lasts for days. There’s no pinch hitter, there’s just you. Good times.

Everyone’s symptoms are different and yet the same in some regard. Medical professionals don’t know a ton about it, although it is not an unpopular disease. Most of what I have read and heard from my doctors is it is centered around the bladder. It makes you very susceptible for infections. For me, this is just one small piece to this very painful puzzle. It is different for everyone, some have it severely, others only from time to time. Coincidentally, my mom was diagnosed a few months before I was, and one of my friends from junior high also has it. You learn to join Facebook groups and lean on each other for tips, tricks, and support.

Just when I thought I knew of every symptom that could occur from IC, I was introduced to something new. A week ago I woke up and felt like I belonged in a COPD commercial. Breathing felt really tough on top of the fact that I had a UTI. It went from 1 to 100 in only 24 hours time. Everyone’s body is different, but I am not stranger to infection (thank you 8 bouts of mastitis and one nasty infectious cyst in my back), so I can tell immediately when an infection is there, and when it’s serious. It’s the same core symptoms for me:my feet feel like literal bricks. My legs feel like I’m walking through cement, my arms are roaring like I’ve just bench pressed 100 lbs 3 times over, my back feels like Jeter just hit a grand slam against it, and my head is throbbing. My eyes and throat are sandpaper. This is part of the inflammation- all the mucus membranes suddenly become like tiny deserts. However, this time, the disease went after all of those things plus my lungs.

Fast forward to better antibiotics, anti-nausea meds, ibuprofen, and a regular inhaler, and one week later I’m almost back to normal. When I saw my doctor, he explained succinctly why I felt like I was dying from this infection. You have an inflammatory autoimmune disease, Amber. So your organs and limbs are always simmering with that inflammation. Now introduce an infection, and you’ve just set your insides on fire. That’s why it’s difficult to walk, breathe, and think. The three asthma attacks you had that first day of the infection were due to the IC . The inflammation doesn’t just stop at your limbs and bladder, it went to your lungs this time and it feels serious and scary, but with the right treatment, you WILL start to feel better.

I am sharing this story reluctantly. Being seen as sick is not sexy. I pride myself on being strong and this is making me uncomfortable just by writing it, but I feel compelled to do so anyhow. I’m 40 now and owning every part of who I am is important for me. I demand it of myself now.

Part of me has changed whether I like it or not. There are days that I wake up and I don’t want to move because I don’t feel well. There are days I have to pick up my kids from school and smile at people when I feel like I shouldn’t even be out of bed. I want to be the me that was always up for an adventure, energetic, and healthy. And, frankly, it pisses me off that I can’t always be that. I repeat this mantra when I haven’t gotten out of bed for 4 days THIS IS NOT WHO I AM, THIS IS NOT WHO I AM. Funny enough, having this happen also opened my eyes and made me look at everyone else differently.

I used to think to myself, wow, that person is always a grouch, or WTF? Why does she NEVER smile back, or God, that person is so short/cold all the time. Now, I wonder if they are in physical pain? Maybe they are suffering in some way-mentally, emotionally, physically? I feel guilty for having judged them. Maybe they legitimately feel like crap all of the time, and I am lucky enough to feel like crap only some of the time.

On this very topic, about 12 years ago, I worked with a woman who was a single mom in her mid-thirties who was always talking about how sick and weak she felt. There was just one strange thing- she never looked outwardly sick to me. Everyday she complained in confidence to me about how ill she was, how she did not know how much longer she could keep coming to work. She said she had an autoimmune illness and it affected mostly her bladder. She called out sick almost every other day. She broke plans whenever we tried to get together outside of work. Two of her friends at work would complain loudly about being blown off by her or vowing never to make plans with her again. I went out to dinner with her one night only to end up calling 9-1-1 because she collapsed on the way back from the bathroom. A few short weeks later, she quit work due to her illness. I never heard from her again, and I never tried to contact her.

I am ashamed to admit this, but I didn’t really believe that she was ill. This was purely on the basis that she did not ever “look” sick to me. I was frustrated with her, I felt she was making up her symptoms for attention, using it as a crutch to bail on people and constantly complain. I realize now it was my own pure and total ignorance as to why I felt this way toward her. Autoimmune sicknesses are often wreaking havoc on the inside, not necessarily visible on the outside, and folks are just sort of supposed to deal. Life doesn’t pause when your body decides to attack itself, and since there is no cure for most autoimmune diseases, that is exactly what you do. You keep going and do what you can to fix the symptoms.

After remembering this, I wanted to contact her. I wanted to see how she was doing after all these years, and if she was able to go back to work. I contacted a mutual friend to see if he had her contact info, and he also never heard from her after she left the company. I want so badly to apologize to her, because while I never said to her that I didn’t believe her, I’m sure she could feel it. All these years later, I realize that this illness I have, could very well be what she had. Part of me wonders if this is karma biting me right on the ass!

Health is everything. I know those of you reading this are just like 2018 Amber on July 13th, taking your health for granted and shouting at the universe – What you got? Bring it! I’m telling you, health really is EVERYTHING.

You know what else? Health insurance is also everything. And…I happen to not have it. Just in time for my first mammogram and for my first year of having IC. I hope there is change in this country in the foreseeable future making it so that our jobs are not tied to having good and somewhat affordable health insurance. The “least expensive” option through Connecticare for us was a $12,000 deductible with a monthly premium of $1100. That means we’d have to spend $25,200 before being covered. No thanks. When you step back and think about how getting a job with healthcare benefits dictates being able to have reasonable health insurance, and that our jobs and healthcare are somehow intertwined, it’s pretty nonsensical. Here’s hoping something changes.

I leave you with that to ponder.

Stay healthy my friends!