Personal · Treatments

A well needed update

So apparently it’s been exactly a month! Time flies when you have 0 energy and motivation for things.

I have honestly been meaning to get around to this. It’s just been an ass kicking battle.

Where do I start?

Well for one, I was almost done my prednisone pills when I decided to adventure off to Banff, Alberta. I figured a girls trip was exactly what I needed to get my mind off of things and I hadn’t been on my snowboard the entire season. The drive up was fine and I was able to make it just fine our first night there. I figured I was in the clear! But the next morning I awoke to this terrible nausea that would not shake off. The whole ride up to Lake Louise I just wanted to hurl. We got there around 10:30 am and I wasn’t able to get on the hill until two hours later. Even then I felt like I was taking a risk. It was a busy hill and I had a lot of clothing on, I don’t think I am that fast at stripping myself down to go to the washroom and I certainly wasn’t down to pop a squat in a little barren section of “forest” that was really just 5 or 6 trees next to each other. I stayed on the bunny hill the entire time and was absolutely exhausted after my 6th run.

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Lake Louise where for a couple hours I was okay!

BUT, my body was just fine going out for dinner and going out that night… of course. I also survived the hike the next morning. So I figured it was just a freak isolated incident and would go away.

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Grateful

Well, I was dead wrong. Since that day I have been experiencing nausea every single day, every time I go to the washroom. And it just seems to be progressively getting worse. Last week I took a day and a half of of work due to my nausea and fatigue.

But the following weekend was my 24th birthday. Woo-hoo. I think I spent more of that weekend crying more than anything.

Being off prednisone makes you extra emotional FYI.

It started off with my lovely boyfriend decorating his entire house for me with a banner, streamers everywhere and balloons filling the living room and dinning area. When I had first entered the house with 3 bags in my hand and a dog on a leash (because I don’t believe in doing more than one trip, should maybe reconsider….) I had fallen back while my dog and his dog wrestled each other right at the front entrance causing me to break his door….. cool. Great. Then we recieved a letter from the insurance company back when we had to cancel our Mexico trip. After months of waiting (this was the end of August) they had decided they owed us nothing because I had a pre-existing condition and had not be in remission for 90 days. I’m sure it took a lot of seething through my medical files to find enough evidence of this because they called every doctor I have. So that was $1200 I lost and $1200 by boyfriend lost simply because he was associated with me. I completely broke down. I just broke his door and now burned a hole in his pockets and he decorated his house for me and wanted to make my day special.

And what scared me the most was that this was going to be the rest of our lives. We would always have to read the fine print on things to make sure I was covered. We would have to reconsider things. We would be denied and turned away from certain things because I am sick. Something that is beyond my control, yet I am being punished for.

But he managed to calm me down and we still had a lovely evening. My mom and brother also took me to this amazing little French cafe for brunch and the food was amazing, but nausea got the better of me and I couldn’t quite finish it. It seemed to carry on for the rest of the day as well. But my family was amazing, and despite wanting to cry and just be mopey, they were able to put a smile on my face.

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Birthday dinner with the family

My birthday ended up being a 3 week celebration really, starting with Banff, then a celebration with my family, and ending with the following weekend where my work went out to celebrate mine and a co-workers birthday. I was down to half a pill at that point and could really feel it kicking in. By 9pm I was ready for bed. Seriously. Alcohol and exhaustion do not mix pretty. The next morning I woke up feeling fine and was excited that maybe finally, for once, my body was going to cooperate. I was prednisone free that day as well! Well 5:30pm rolled around and as I was getting ready for my dinner with friends my bowels just revolted. I managed to run to the washroom twice in the 10 minutes it took for the uber to arrive. On the ride to the restaurant I was not sure if I was going to puke or shit all over this poor man’s car.

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Co-workers decorated my office

As soon as I got there I bolted to the washroom, just making it in time. I was shaking. My body was hot and then cold. As I hunched over sitting on the toilet I just bawled. I wasn’t sure how long I could do this. My body was so unpredictable. Nothing seemed to agree with me. I loathed my body. I tried to keep my composure, but my friends knew something was off. As soon as I made my way around to say hello to everyone, eventually I just broke down in front of the table AND the entire restaurant as my best friend asked if I was okay.

I was not. I felt ill, I was tired of everything and just tired, and I hated myself. Great start to 24. But I took a deep breath, moved along, and forced myself to enjoy the night even though I ran to the washroom another 3 times after that.

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so lucky to have all these humans there for me

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It’s been a long couple of weeks. I am feeling a little more sick day by day, but my symptoms are all over the place. Some days I am just tired, other days my joint pain is unbelievable, and other times my head aches are unbearable. One consistency is being gasy and nauseous. A really cute combo.

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The hair loss is also back!! Yaaaaay, not.

So here we are. Awaiting to hear my doctors opinions this Thursday and just trying to get through until next Monday with my next Entyvio infusion. I am back to doing it every 4 weeks for now! I mean it’s not really a good thing because it means that I am still pretty sick, but the though of waiting 8 weeks made me feel sick with nerves.

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My last Entyvio infusion that was at the end of Jan. Supposed to be my therapeutic dose.

So thats basically my life the last month. Well I mean there was work, and school, and other things. But those were the big things. I am looking to go down to part-time work since school, full time work, and trying to get better is becoming too much for me. So fingers crossed we find something ! For now I’m still full-time.

Until next time!

xoxo,

Brittany

8 thoughts on “A well needed update

  1. Ahh hun my heart breaks for you! I am 52 so past all the demands that a younger life brings, but I can relate to a lot of what you have written. We all need to stick together and support each other, there is strength in numbers. The one thing that really struck me in what you’ve written is the similarity in all of us to keep going even when at our worst. Remember it’s ok to say “ I’m not up for this”. People who love you will understand. Rest and eliminating stress is most important! You have an amazing support network and these people will love you know matter what. They want you healthy too! On a side note we had to cancel my 50 th birthday trip to Jamaica. We paid by credit card, all was refunded. Don’t give up, appeal this if possible. Speak to your doctors, they should understand. Hang in there, better days are ahead. Keep well! Kathy

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    1. Hi Kathy! Thank you for your response. Unfortunately I booked through a travel agency and bought insurance with it. Of course in the fine print they mention not covering pre existing conditions that are not stable for less than 90 days. We did reappeal but got the same answer. Such is life ! But I agree that reducing my stress levels are important. It’s just hard to do haha but I’m so happy you reached out. It’s always nice to be reminded that I am not alone

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  2. Oh man, I don’t think I blogged about it but the nausea from prednisone withdrawal is no joke! I have a supply of zofran (rx anti-nausea med) and I suggest you ask your doctor for some, works like a charm. Do you have any anti-spasmodic meds like dicyclomine? Also helps to quell “episodes”. I felt awful for several weeks and couldnt keep taking pain meds so I tried Charlottes Web CBD and it helps quell inflammation and has noticeably helped my pain in my joints and inflammation in what remains of my rectum. Also, tumeric. And lastly, epsom salt baths. It will get better. Get as much rest as you can. XOXO

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    1. Thank you for all this advice ! I am not on any of these things so I will definitely bring it up at my appointment Thursday because I just got back from the hospital and they are almost 99% I don’t have an infection. Just have to wait and see what my stool says. But I always look forward to your advice and comments. Hope all is well ❤

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  3. Do you have any advice on handling this condition in an office/work environment? Do you just own it or do you try to hide it? I still get so embarrassed when I have to “leave” suddenly or repeatedly. Need some tips.

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    1. Hi Lola, like Kathy said I would just own it. People are a lot more understanding than I often gave them credit for and it made coming into work a lot easier. It’s a legitimate illness that you sadly have very little control over. I started a new job when I was going through my diagnosis process, so my work has been there through my highs and lows. The support made available to me because of my illness was tremendous. While I know not every work environment will be as supportive it’s important to look after YOU. Do things that will make your life easier to function around. I used to get so embarrassed too but I realized I cared more about what people thought than they did. Half the time they didn’t think too much of it!

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  4. Hi Lola,

    I would personally just own it! You have nothing to be ashamed to f and the less you worry about what people think the better!
    We owned our own business and often I’d be in meetings and have to leave right in the middle of them. Just politely excuse yourself, and don’t make a big deal of it. It will cause you more stress worrying about it. Good luck and remember everyone at some point is dealing with their own personal battles. Good luck hun and don’t stress!

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