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!

Second Opinions and Intuition Are Vital To Health

Many of us have been in a situation where a diagnosis completely missed the mark or we left the doctor’s office knowing the information we were given didn’t seem quite right. For some, questions have been left completely unanswered, and it’s resulted in their condition worsening. For others, obtaining a second or third opinion uncovered the correct diagnosis thus saving their life or improving their quality of life immensely.  It got me thinking recently just how critical it is for all of us- old, middle-aged, and young to be not only our own advocates, but our loved one’s advocates as it relates to health. Here are three scenarios that may help you to ask more questions of yourself, your loved ones, and your physicians.

Solving The Issue On Your Own

When it comes to our kids or loved ones, it tends to be easier as the observer to pinpoint what may be contributing to their health problems. Think about how one small change in someone’s food selection could benefit them if they were to discover they had an allergy to a food they often ate? Recently, my son was complaining of a stomach ache 3 -4 times a week. He’s never been formally tested for lactose intolerance, but I figured it out early on by process of elimination.  He used to cry and complain of stomach aches after he’d have cow’s milk in his cereal or drink chocolate milk from the time he was a babe. I also happen to be lactose intolerant myself, so I figured his chances of having the same issue were pretty good.

After asking him what he’s been eating recently to try to uncover the reason for all of his stomach aches, I came to realize it was in fact lactose related yet again. He would complain after eating Cheez-its, Goldfish, smoothies, milkshakes, and occasionally pizza. Since our kids aren’t always with us when they’re eating (school, after school programs, friend’s houses, etc.) it’s not always obvious what is bothering their stomach. Honestly, I was buying the goldfish and cheese flavored crackers and not thinking twice. The powdered cheese in those snacks must have been contributing to the issue. For the last week, he’s stopped eating those snacks and you guessed it, the stomach aches have completely ceased. If only every health problem were that easy to solve! Sometimes, we can actually solve health issues on our own.

Following The Commonalities When There’s No Diagnosis

Sometimes, our loved ones notice more than we give them credit for. Many years ago, I became very ill while on a business trip. I was having a lovely time at an event  party until the wee hours of the night, and while chatting with co-workers, I started to feel extremely tired. I took inventory of what I had eaten..mostly chicken wings. It didn’t help that I had also been drinking cocktails, so I assumed it was a bad combo of the drink and food choice. I called it a night earlier than I had expected and headed back to my hotel room.

That night, I seriously thought I was dying of food poisoning- the pain was so bad. I started vomiting around 3 a.m. and didn’t stop until it was time to check out and head to the airport. Everyone assumed I had had one too many celebratory drinks, but I knew there was no way this was a hangover-it felt different. I ended up in the hospital for two days following my return. They discharged me and said they thought it might be pancreatitis. It was pretty much an unknown diagnosis.

What my then boyfriend (now husband) pointed out, was my symptoms seemed to weirdly mimic the same ones I had about six months prior after a meal at a hibachi restaurant. Following that meal, I had also landed in the hospital for a few days, only to have been discharged with no answers and the doctors scratching their heads.

We visited that same hibachi restaurant a few months after I returned from that business trip.  And again, this time even faster than the last, I could not even walk to the car.  I was weak, sweaty, and vomiting profusely only 10 minutes after eating. My mouth felt funny and my tongue felt puffy, which was a completely new symptom. I went to the ER, spent the night, and again, was discharged with no answers. Again, my boyfriend spoke up about what he noticed. I should add here that him being a chiropractor (who has studied a thing or two about the body) also helped. He had figured it out.

“You’re allergic to sesame!”

He pointed out my reaction was much more severe when it was in oil form. He had to be right! For as long as I could remember I would get stomach aches when I’d eat sesame bagels- I chalked it up to my lactose intolerance because of the cream cheese. Low and behold, it was the seeds! That business trip I had been on- I had eaten chicken wings lathered in sesame oil and seeds. The hibachi place we had dined at had cooked our meal in sesame oil.  Also, it answered questions for me that went way back to my youth. There were these crackers that our neighbors always put out at parties called Sociables. I would eat like the whole box – I loved these crackers so much! And EVERY time we went to their parties, I wound up in their guest room crying and writhing pain until the wee hours of the night. We could never figure out why my stomach hurt so bad at their parties! Turns out,  those crackers are sesame crackers. What an a-ha moment!

Three visits to the hospital and none of them resulted in answers. My husband had figured it out just by going through the foods I had eaten each time- and drawing a conclusion based on the most common denominator. Take note that with each allergic reaction, the symptoms worsen. Further down the road, a year or so later, I ordered Chinese takeout and double checked with the staff to see if they had cooked it in sesame. They confirmed they did not. Three bites in and it felt like I had swallowed gasoline. My throat felt like it was closing and the stabbing pains started in my stomach. This time, we avoided the hospital and waited it out to see if it would be over by morning. Thankfully, it was ( but I DO NOT suggest waiting it out- the pain was unreal).  If you have these kinds of stomach aches that land you in the ER, and have also had doctors scratching their heads, think about getting tested for a food allergy, or going to a specialist to run further tests. This, for some reason, had never crossed my mind or my parent’s minds for that matter, when I was young. Sometimes the answers are literally right in front of us!

When Intuition is Critical And So is A Second Opinion

Many of you are caring for ailing parents. You’re driving them to their doctor appointments or tagging along to make sure the right questions are being asked. This is what one of our friends was doing with his father when his eyesight began to decline in one eye, along with the white of the eye turning very red. They started with a top neurologist at a local hospital and were told it was allergies. When the eye began to turn out and they returned, they were told it was an auto-immune disease. The CAT scans continued to show nothing abnormal. But something wasn’t adding up. His father’s teeth started to ache, which lead them to having three teeth removed, and the medication he was on didn’t seem to be helping the symptoms at all. When he  began to see his father’s overall health rapidly decline over the next few months, he sought more answers. He decided to take him to a specialist at a university hospital- a neuro opthamologist. They had a special CAT scan machine that looked at the eye in ways that other CAT scans could not. And this was when they discovered there was a cancerous tumor that was crushing the sixth nerve. The sixth nerve is a cranial nerve that is responsible for the outward gaze. They also discovered that this cancerous tumor had stemmed from a melanoma that resided on his cheek and had metastasized to this nerve behind the eye. It was a serious diagnosis and treatment had to be aggressive to save his father.

When asked what his advice is for those that are currently searching for answers, he says to opt for university hospitals- not necessarily your local hospital. University hospitals study thousands of diseases and have more specialized advice, machines, and treatments to suggest versus a local hospital. Your local hospital studies less diseases at a time and may not have the answers because they’re not exposed to as much info. You are better off going there for things that aren’t as complex. It’s also a team dynamic at a university hospital. Why? Because a university hospital is a teaching hospital. All different kinds of doctors are invited in to give their opinion and take a look at what is going on. You’re not getting the services of one doctor with one opinion. Another helpful piece of advice he gave was making sure to track down a specialist.  When something quirky is going on with one specific area of the body, it’s best to go to a doctor that specializes in that area of the body, rather than your primary care doc. The clock could be ticking on your loved one’s health when you’re not getting the answers you need from the right source.

Too often we all hear stories about people putting off going to the doctor only to later find out something is gravely wrong,  or getting a misdiagnosis and being put on the wrong medication, or having no answers with worsening symptoms, etc. Always continue to search for answers for yourself and your loved ones, because when you really peel back all the layers of life that we all stress about, there is truly nothing more important than our health.