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!

Random Things I’ve Learned About My Kids This Week

Now that I’ve been unemployed for two weeks, my days are filled in a different way. All the things I’ve put on the eternal back burner I can now take on and finish in my home.  Among the adult chores I can now tackle on the home front,  I’ve also enjoyed taking and picking up my kids from school and the extra hours in each day that I now get to spend with them. In the last week there have been some cool conversations and some not-so-fun ones with my sons.  There have also been some bonding activities I’ve tried to cram in each day since I’m a little kooky and always feel like when something good is happening it will soon go away. So I have been doing what I do best- squeezing in as much as possible. Sometimes the activities go well, sometimes they blow up, sometimes I have a talk with my kids and learn something when paradoxically, I am trying to teach THEM something.

multitasking

 

On my first week home I let both my sons know Mommy would be picking them up from school and they no longer needed to go to their after school care programs.

My oldest pondered this for a long minute then said, “But Mom, I don’t want you to pick me up from school. If you pick me up that will mean Y is all alone at after care. She only plays with me. I can’t leave her like that-it’s not right. She needs a friend. So, like, no offense, but can I still go there and we can pick one day that you can get me right from school?”

I thought to myself -how can I refute this? He’s showing compassion for his friend and he has a really good point. This program is pretty amazing and it is extremely inexpensive for the entire year, and we’ve already paid in full up front. Most importantly, he unleashes all that pent up energy there because there are so many activities. I agreed with him that it was the right move for him 4 days out of the week, but that I will pick him up a half an hour to an hour earlier than usual.

For the last eight months I have put our youngest to bed pretty much every night. Long story short the four alarm meltdown when I don’t put him to bed lasts forever and cuts into the time he should already be catching his Z’s. My eight year old is beginning to get pretty sad about this because he misses this connection time with me. So my youngest surprised all of us by saying, “Mom, I want Daddy to put me to bed one night and then you do the next”.

Both me and J were excited to get this long awaited connection time. While lying there, we usually chat about life and other random things before he drifts off. While he was dozing, I pulled out my phone and started a task I’ve been putting off for a while -adding members to a Facebook group I’m the administrator for.  He peered over and asked what I was doing. When I explained, he sat upright, his voice upset. “You mean you don’t add everyone? What do you mean you decline some people when they try to join your group? That’s so mean. You’re MEAN. You should be including everyone or anyone who wants to join! I can’t believe you.”

Startled, but happy that my kid has an inclusive nature, I explained to him that my group is only for the county we live in and it isn’t relevant or useful to those that live in other states, countries, or even other counties. He would not let it go. He saw it as very black and white. If people want to join something- let them join. I realized no matter how many different ways I tried to explain to him how that isn’t how these groups work, I wasn’t going to win this argument. He went to bed steaming mad at me. Some things are hard to explain as a parent and I felt so crappy that this was our first night together having a nice chat and that it ended on this note. While upset that my kid was disappointed in me, I was actually happy that he got so worked up about something he believed in so firmly. Passion is a good thing.

angry-kid

My little guy wears a uniform to school. It’s a T-shirt and sweats basically. I bought two polos which are part of the older kid uniform just in case there was ever a day he needed to dress up for school.  Now he refuses to wear his T-shirt which is the normal uniform and only wants to wear the collared polo. He cries the entire way to school if I put him in the T-shirt. I tried the route of explaining to him that there is a mountain called Mt. Everest and that is also the name for our pile of laundry.  Mommy can’t always get to washing the two polos in time for school. He just cried harder. I just chalked it up to a bad couple of mornings because he’s not a morning person. Then came time for his older brother’s parent/teacher conference this week. We had no luck getting a sitter and ended up having to bring both kids with us. Before we left, E begged to wear a fancy shirt and a tie. He said he wanted to look his best for his brother’s conference. Insert me melting into a heap on the floor. I connected the dots right then and there. Looking nice is important to him. He wants to look his best at school – that’s why he had the fit about wearing the t-shirt vs the polo. Sometimes it takes us parents a minute to learn what our kids are really trying to say.

I told the kids we were going to have a screen free evening yesterday and make pumpkin pretzels for a gathering we’re having this weekend for Halloween. I thought it would be a fun activity in the kitchen for the three of us. Not. So. Much. The melted orange coating got everywhere and they just kept trying to eat it. Then they spilled half the M&M’s all over the floor and we had to throw them away. Each time I finished putting one on the tray no sooner would I go to place another down and the one I just finished had disappeared into one of their mouths. Can I tell you how frustrating this was? I drove 20 minutes away to track down the last two remaining bags of orange candy melts at Jo-Ann fabrics because every store from here to NY was out of them. Note to self and other moms- some baking activities are fun with kids. This one was not! We argued the whole time. The good news is- I had just barely enough and got ‘er done. Here they are in all their delicious and pretty hide-them-from-the-kids glory.

pumpkin pretzels

Learnings, wonderment, and arguments with the kids aside, I am really enjoying this time with them. It solidifies my decision in leaving my job every time my four year old’s face lights up when I’m standing outside the doors to pick him up from school. He still asks me every morning if I will be there to pick him up.  I’m guessing it’s because he’s adjusting to no longer being the last kid at after school care every day. While this is temporary, I’m not taking one second for granted. I look forward to what I’ll be schooled on next week by J and E!

 

Bedtime Stories: Mommy’s Encounters With Leonardo DiCaprio

Sometimes we forget about the hysterical or cool things that have happened while we’re out having fun into the wee hours of the morn. We especially forget if many years have passed. If you would have told me ten years ago I’d be resurrecting stories from my crazy nights out in order to up my bedtime storytelling game with my two sons, I’d have called you a liar.  Nevertheless, there I was, sharing the details with the kids. Read More Here