Life and Times with No Immune System - Uncover Ostomy
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Life and Times with No Immune System

Last week was an insane crazy awesome week.

On Thursday night, my mom and I drove up to London Ontario so that, the next day, we could watch my little brother graduate from Ivey at Western University. That night, we arrived in the city around 9:30pm, went for celebratory drinks and dinner, then went back to our hotel and got ready for the next morning.

Friday was a whirlwind with an early morning wakeup for me to hit the hotel gym, followed by a quick shower and change to get to the graduation auditorium. Hours later, (hours….) my bro graduated, and we made our way to our favourite local lunch spot back when we both went to Western. After that, we headed over to my brother’s girlfriend’s parents’ house for a lovely celebratory dinner. In between all this, I was working on my phone, my computer, back on my phone, and so on and so on (there was no way I couldn’t work – I have an important job!)

After getting home after 9pm on Friday, we all woke up the next morning to attend the early morning ceremony for my little cousin’s Bat Mitzvah service! We sat and watched her read her part on the podium and followed it with a lovely luncheon full of family and friends. The next part of the festivities – something my now legal cousins and I had been waiting for, for 12 years, was about to happen – an epic party where we could enjoy each others company while being all fancied up and.. enjoying the open bar. I was so excited.

In between the luncheon and the party, my boyfriend and I went back home to change. That morning, I had been coughing a bit, but felt completely fine and ready to party. Except, well, during the morning, I mistakenly messed up 2 different names of people whom I knew exactly who they were… it caught me off guard and weirded me out a bit, but I figured I was just tired. Best way to get over being tired? Work out. So, the boyfriend and I hit the gym before we showered and put on our fancy clothes.

It wasn’t until getting out of the shower, however, that something didn’t feel right. I felt warm and cold at the same time and my breath seemed to be coming out hot. I’ve had this before, but didn’t want to believe it. Sure enough, after taking my temperature, I had a fever.

But the fever was low.

Low enough that I could still attend the party we had all been waiting to attend for 12 years.

Now, all of us with either Crohn’s, Colitis, Cancer, or any other auto-immune disease know the drill. We get sick, and we get sick often. Sometimes, we get sick so often that we barely have a month of health due to our lack of immune systems. This can be a huge hinderance on our social lives, so, over the years I’ve learned never to let that get in the way… at least, to try.

So I put on my party dress and headed to the event.

And I made sure to snap a pic before I knew I would turn into a ball of shivering sweat on the floor.

Party Dress

“You don’t even look sick!” (They always say that, right?)

Luckily, I managed to.. survive. At least, for most of the night. I spent a lot of time at our table, and managed to eat some of the delicious food presented to me. I also stood and applauded for some of the speeches and spoke to a number of family and friends (always making sure to warn them to stay back from me, lest they catch something!)

As the night wore on, I, unfortunately, started to feel my immune system losing its battle against whatever was attacking me. I started to feel fatigued, cold, and cranky. It already being 12am with most people filtered out, I felt the night had been somewhat of a win. Not a success in any means, but at least I had made it through.

I was disappointed, however, to not be able to dance, laugh, and enjoy the festivities as much as I would have being my 100% self…but when this is your normal, you learn to deal.

The drive home, though, was where it started to really kick in. I was shivering hard and not taking anyone’s crap (as my boyfriend and brother cracked jokes in the cab.) I just wanted to be in pajamas and asleep. I got home, threw my purse, coat, shoes, and dress on the floor, got into the comfiest clothes I own and crawled directly into bed. As I’m told, I passed out within seconds.

Now, in my many years of being sick with every thing you could possible imagine, I’ve been quite used to getting a fever, having it stick around for a day or two, sweating it out, and carrying on with my life the next day. Sunday was supposed to be that day. But Sunday came. And Sunday went. I mean, it wasn’t all that bad – a bit of sweating and aching here, but I still had an appetite and wasn’t coughing too much. Cool – I’ll be back to work tomorrow.

Hah.

Haaaah.

Monday morning, I wake up to a fever of 39.5 c (103f). I basically couldn’t open my eyes, move my limbs, or lift my head. I was a wreck. My mom was so worried (because obviously she was checking in on me), that she insisted I go to the emergency room in case I had pneumonia or something worse.

She literally had to carry me there.

I don’t remember being that unbelievably incapacitated since I was sick with Crohn’s.

This was insane.

After a number of hours in emerg, sitting, waiting, blood work, more waiting, chest xray, being poked, prodded… etc, I was discharged.

The diagnosis?

Dr: “Well, we don’t usually see it this early in the season… but we’re pretty sure you have the Influenza Virus.”

(Obviously I have something that they don’t usually see at this time because my body has very little capacity to fight it off…)

Me: (muttering in my armpit because I’m lying in a ball on a gurney and can’t lift my head) “What do I do?”

Dr: “Nothing, just drink water and sleep. You should be over it in 7-10 days.”

7 to 10 days?

For someone without an immune system, those days could be doubled. Multiplied.

I was just hit with a life sentence.

So here I am.

4 lines scratched on the dresser beside my bed, counting the days. About to scratch in one more.

Today is day 5 with an insane fever and inability to move, to think, to eat, and struggling to type this blog without major grammar and spelling mistakes in my hazy fog (I’m sorry if there are any.)

As much as I’m complaining, this has been an enormous wake-up call. As I mentioned above – I don’t remember ever being as close to this sick as back when I was struggling with my disease. I have had a pretty good run lately where, even when I have been sick, I could get over it in a reasonable amount of time(-ish.) I’ve been lucky.

Many of you, however, are dealing with what I am dealing with now, almost every day – if not every day. Not necessarily with the flu, but with the symptoms of your disease, or from other sicknesses you’ve picked up because your body can’t fight off the germs. You are struggling to walk, to move, to eat, to socialize, to work, and to enjoy life. I am in awe of you.

But you can’t let this stop you.

I went to that party, and even though I didn’t have the best time, I was there and with the people I loved. I’m also still working from home as much as I can because my team needs me and I need to be productive. And I am still writing this blog because I had to pay homage to all of you who deal with this all the time.

So, to my dearest immune system and those of all others:

While we are thankful that you exist and work in our bodies to fight off infection in some capaticity… could you please try a little harder?

Sincerely,

The girl and her friends who ain’t got time for this.

Jessica Grossman
info@uncoverostomy.org
2 Comments
  • VeganOstomy
    Posted at 00:39h, 30 October Reply

    Damn Jess! Hope you’re feeling better soon.

  • Sandra
    Posted at 04:04h, 30 October Reply

    Damn girl I feel your pain! Yet another reason it is good to get a flu shot, protect the ones you love and don’t spread the pain.

    I just spent one week at home and am now on week 4 and still healing from a bout of Shingles that was on my head and neck. SO not fun and SO messes up the medication schedual, no TNFalpha inhibitors till this thing is really on its way out 🙁

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