Hi Superheroes! I share so much on my instagram stories I need to remember to share a lot on my blog too!! Blogs are good for detailed stories and oh do I have a story for you. My goal for January is to add a lot more blogs on my site. This is a realistic goal I will set. I love setting realistic goals and honestly this is a bigger realistic goal for me. Some days my realistic goals are trying to walk to the kitchen without getting out of breath when other days my goals are trying to eat a meal without vomiting. Other days like today a realistic goal is to write one full blog post without my brain fog getting in the way and on even bigger days my goal is to leave the house (doesn’t happen often lol) to do a thing but knowing after I have to rest rest rest because my body pays the price. Setting realistic goals is so important because in a society where we are measured by productivity

Anyways lets get into it!

My good friend L is getting married!! This will be the first wedding I am part of and I am so excited. I am very anxious too, due to my health and I have realistic fears but I am not focusing on that yet since worrying won’t actually change the outcome! I look at it as a year ago today I would have NEVER been able to attend a wedding and this month I (think) I AM able to, and for that- it’s a huge win.

So she’s getting married and like a lot of brides to be she had a bachelorette weekend!!! I am so so so lucky that this bach party wasn’t the typical olden day bach party theme… there was no clubbing, no day drinking, no bar hopping etc. It was a weekend away in Charleston South Carolina!! I am so fortunate that I was able to attend this bach party solely because it was more of a relaxed bach weekend. It involved candle making, strolling rainbow row, horse and buggie tour and going out for meals. It was from Friday night to Sunday afternoon.

Flying takes A LOT out of me. The stimulation and energy you need to use going through security, having to be “on” and being up in the air with the elevation makes my FMF, Arthritis and Crohns hurt a lot. I later learned that flying triggers a lot of illnesses because the high altitude expands our intestines. With all that being said I was really nervous to fly alone and also nervous to fly and be extremely wiped out and then have to continue to be “on” with the girls all in the same day. So instead of arriving Friday night at 9 pm like the girls did, my mom and I traveled the day before. So Friday I had alllllll day to rest. I first want to say I am SO blessed and appreciative for my mom. She is a true superhero. Being able to come with me, getting a separate hotel room, in a different hotel, that has a huge bath tub was amazing. I didn’t think I’d have an emergency flare that badly that I would have to be with her… but that sadly was not the case…

On Friday all day my mom & I relaxed and went out to lunch, it was so nice to have quality time with my mom in a different state! I was being EXTRA cautious though because I did not want to tire my body out before the girls arrived that night. The thing is with chronic illnesses you can plan plan plan and our illnesses laugh and have a mind of its own. But I did need to rest so I wouldn’t crash and not be able to socialize and be with the girls that night. I took two baths that day and rested in bed before they came.

Around 7ish it was all starting to hit me. The girls are arriving soon and I will be one on one with them DOING THINGS and being ON. (I remember the days I used to just go go go without a second thought ugh.) I started having a panic attack, a legit panic attack to my mom. She calmed me down of course and then I started to get excited again but was extremely nervous too. The other thing with chronic illnesses is when we are having anxiety it IS usually on realistic fears and that is what makes it 10x more stressful. At the end of the night when the girls were arriving my mom dropped me off at their hotel. I hugged her and said hopefully I don’t see you until our flight home!!! But that was not the case…

Friday night the girls arrived and it was soooo nice. We all hung out in our connecting hotel rooms and chit chatted for a long time. They were tired from their flight. When L the bride to be was in the other hotel room the MOH and I decorated her room. I will say in the middle of decorating I had to stop a lot and take a lot of breathers. I was very proud of myself for setting boundaries by saying “is it ok if you blow up the balloons you brought and I’ll hang the decorations.” She was the sweetest and said of course! I just really didn’t know if I had it in me to blow up balloons and I did not want to risk it the first night of the trip. I did ask are you ok blowing them up yourself a hundred times because I did feel bad but guess what setting boundaries may be hard but needed. Like the MOH your sweet understanding friends will understand.

Once the decorations were up she walked in and looooved it. They were really cute and girly. We then decided to uber to a dessert place! I split a carrot cake with one of the other bridesmaid, she was ready to dig in but I said lets cut this in half and split them among plates (covid and other germs!!!!) and she was fine with that. I ate some of the cake minus the frosting. After chit chatting and eating outside we went back to our rooms. They were tired from their flight and I was drained because one my body is going through a lot and two I haven’t socialized and been “on” in a while. I was so happy we had an early night in bed….

4:00 I woke up tossing and turning in a lot of pain. I kept trying to close my eyes to go back to sleep. I can’t believe this I thought. The ONE time I FINALLY am away, trying to have fun, and with friends and I woke flaring bad. I kept closing my eyes trying to sleep. I was not using my phone for the light to wake me up, I was silently praying for the flare to go away. I already have a high pain tolerance as it is, I know everyone with severe Crohns disease does. We fight pain 24-7 that most people would be admitting themselves to the hospital for. This was bad. I then grabbed my phone 20 mins later and texted my mom. She wanted to come get me but I kept saying no no no I want to stay. This will pass. It was not passing, it was getting worse and worse and worse. My pain was increasing and then I needed to go to the bathroom. Bulging over (how most my flares are) I walk to the bathroom. A little bit after that I felt I was going to pass out. I thought to myself ok if I pass out here no one would know. As the pain was increasing I texted my mom “can you come?” She knew the pain was that bad for me to ask if she can come when I am usually saying i’m ok when I am not ok. She replied I am already here. (I am so blessed with the best)

When you’re really sick, your mind doesn’t function right. At least mine doesn’t. I grabbed curled over an empty pocketbook, not the one that had my wallet or hotel card of course oops. I grabbed sneakers (do not ask why) I was already wearing shoes and I grabbed the one useful and important thing; my medicine pouch. I guess I was extremely out of it, but not too out of it to remember the most important necessary thing! I think I took a while even though I was only grabbing three things that were out of my suitcase just on the counter because my mom kept texting me concerned asking if I was ok and if she was coming and if she should come up.

I then grab my things and head to the elevator. I was crying so upset and frustrated. When I walked into the lobby my mom was standing there waiting for me. She is my angel. I started bursting into tears so upset that I had to leave the first night and be in so much pain. It isn’t fair. I asked my mom what I should text L, because she was going to wake up and see me gone. I was also annoyed because I didn’t want any of the girls to know my health conditions but they were going to find out when they woke. We got in the Uber, I got into the hot bath, my mom gave me my emergency meds and then I slept. The next morning I woke up extremely out of it. Fighting terrible flares that most would send themselves to the hospital for is beyond exhausting. It’s draining physically and mentally. There are no words to explain it. If you know, you know. I woke up and looked at the time I told my mom they were all meeting for brunch. I told my mom I wanted to go, she kept asking if I was sure and I could just meet them at candle making after breakfast but I did not want to miss it. I missed enough for the last 2 years. I have sacrificed enough. I have hurt enough. I was finally in another state with girls and as out of it and weak as I was I wanted to go for my mental state and to be there for L. Some healthy people may say “I’m so glad you were able to go.” Thats false, was I able to go? No. Did I go into survival mode to attend, yes.

My mom walked me into breakfast and they all had just got there food. They were all SO sweet and happy to see me. I was nervous it was going to be awkward but it wasn’t at all. I got scrambled eggs and white toast the perfect breakfast for when you’re in a Crohns flare. I always grew up not allowed to order white bread and now I get to because it’s better for flaring bodies with Crohns hehehe. We talked I laughed and then we went to candle making…

It’s crazy because I thought I can hide my pain well in social situations then to see a picture where I thought I looked fine, to see how much pain I was in show on my outside too is so upsetting.

I was SOOOOOO excited to candle make. One hour of SITTING, making candles (if you know me, you know my love for candles) and learning all about candles was just up my alley. It was a really really fun relaxing clever idea and a great time. Something did happen though that shook me though. We were making our candles, having so much fun when one at a time each person has to go up and weigh there candle liquid over a heater and pour it into there candle jar. I forget the exact number but let’s say we had to measure it to 16.7. A lot of people got the money shot and poured it right away when others needed a few tries. When it was my turn I was SO out of it from my flare and extremely brain foggy (but remember, thought I was able to hide this) I was pouring the liquid over the scale to measure and I kept pouring way off, too little, too much etc. Then after too long of an awkward time up there, I didn’t realize I was spilling the liquid all over me until the grown lady next to me said “what are you drunk?” and moved her phone fast and scooted her chair over. Thats when it hit me I was spilling it all over and that’s how out of it I was. I was already up there, infront of everyone, doing a hard task for me that was easy for others during an extremely draining flare and an extremely foggy brain. I wanted to cry but I had no choice but to keep going. To give her the benefit of the doubt maybe she did think I was drunk, because we were a group of bachellerotte girls but delivery is everything and she one said it in a rude way and two it was hurtful to me because I was not drunk, I was fighting hard to do a normal task.

This is where it goes back to when people say “I’m glad you WERE ABLE to go out or do that!” Sometimes we aren’t able to, sometimes we are living through survival mode. Through my journey fighting every day to survive I have learned you can never ever ever judge anyone. You never know what someone is going through and you never know what someone has to go home too, so always be kind.

After candle making we crossed the street and got Starbucks. We sat talked, strolled the streets a bit, lounged in the hotel and then went out to a fun nice dinner. We then went to a gorgeous pink girly bar and I got a mock-tail! I am writing a blog post soon on mock-tails, so look out for that one. That night I was extremely nervous I was going to flare that badly again. I was so lucky I didn’t. I had an FMF dizzy spell that wasn’t going away and some joint pain but I was fine to stay in bed overnight!! The next day we went to a really cute breakfast place where I got avocado toast and then we went on a horse and buggy tour. Shortly after we left for the airport. I am so grateful the rest of the trip was extremely fun and I would definitely go back to Charleston. I am so proud of myself for attending. I am beyond grateful for my superhero mom angel bff that flew with me, stayed in Charleston, and was by my side watching me suffer and being right there next to me the whole time. I couldn’t do this life without her.