I just realized exactly a year ago today I was in the hospital. Around this time last year was the evening of my 4th day in the hospital. I was hoping and wishing to be discharged soon. Lucky for me I was discharged the next day . . and haven’t been back since thank God! *fingers crossed*
A year ago I was afraid to eat and didn’t see anything wrong with not eating for a day or two. Not eating meant no pain, no 10-20 trips to the bathroom, I felt normal when I didn’t eat. . . scary thought right? But when you have Inflammatory Bowel Disease (IBD) your life is the opposite of normal.
2016 is the first year I did not make any New Year’s Resolutions. 2015 was such a low for me I could not imagine life being any better, had to accept that I will live with this illness for the rest of my life . . .sucks! But today, I am not in a hospital bed! Gotta enjoy the good days! So what has improved and what needs improvement since last April:
- Health – Improved. I think my mini flare is going away, feel better than I did a month ago.
- Professional life – eh Improved? . .. I’m in a better situation than where I was last year . . don’t have to worry about people stabbing me in the back , kinda nice lol
- Living situation- Improved. Much better, still waiting on my couch to arrive . . lol
- Social life – Needs improvement. First step is not to make it last on my list. 2nd, get over my social anxiety, 3rd, find a hobby, and 4th, make new friends.
I was so frustrated last week that I was in tears, called my grandmother and she said “This too shall pass” . . . “Last year you were so sick and in the hospital and you got through it, you are a lot stronger than you think you are, remember that” . . . thank you Grandma 🙂
This year I plan to be positive everyday, no matter the situation. Can’t be sad when I’m alive for another day with clothes on my back and a roof over my head.
I found this cool idea of the “Happy Jar” where you write something good that happens each day for a year, and at the end of year you get to read all the good things in your life for the past year. I kind of wished I had done a happy jar in 2015, which was one of the most depressing years of my life. I might have been in better moods if I had forced myself to sit down everyday and write something positive about the day.
The first week of January 2016 was hard, very stressful at the job and glad its over. But positive things from this week has been; re-connecting with friends I haven’t seen in a while, and I just paid a security deposit on my first place, no roomies! It’s a great feeling. With this new place I will be moving to a new state (but not really far away) and area where I know no one. I’m officially starting a new chapter, it’s exciting.
Also, I bought some powerball lottery tickets, hopefully my good luck lately doesn’t run out too soon 😉
Remaining hopeful and living one day at a time!
I really didn’t intend to take a little break after my remission post, but I was exhausted. Instead of napping after my colonoscopy I stayed up and ate myself into oblivion, and was exhausted and constipated for days. Didn’t feel better until New Year’s Eve and of course I wanted to go out, but due to me just recovering from a cold and a colonoscopy, I was starting to think it was not the best idea. And since plans were still undecided it was starting to stress me out; made my stomach hurt lol, I decided not to go out. So my mom invited me to go to church, and I initially hesitated because I am not the most religious person, but why not start the New Year in a positive environment. I went to church on New Year’s Eve and it was one of the best decisions I made. I left feeling better, mentally, and more optimistic about my future . . . I kind of wish I would’ve made an effort to go to church more often last year when I was really depressed, but I spent many Sundays in bed.
I was very excited about the news of remission, it means we found a drug that works!! Since I’m still fairly new to having this disease it was hard for me to grasp that in order to stay in remission I have to continue to take this drug (Humira). . For some reason, I thought remission was “Yay! no drugs” But remission doesn’t mean cured, these meds can’t cure IBD because there is no cure, and once that sunk in; I’ll admit I felt kind of sad.. I have come to accept that I will be on medications for the rest of my life? . It’s kind of scary, and is it safe to be on Humira for a long period of time? Will it continue to work? As usual i like to stress myself out over all the possibilities . . . . I just hate being surprised. . .but I have no control over this disease. Like my friends and family have said in the past few days, “Krystal take this as a positive, and tackle the issues when they come” . . . . This is something I will train myself to do!
Living one day at a time and remaining hopeful! Happy New Year!
Merry Christmas! Happy Holidays everyone!
I hope this day is filled with much joy and you got everything you wished for! 🙂
With every holiday there is always some sort of tradition, I might have a new one! This will be my 2nd year getting a colonoscopy before the New Year. I like to say I’m starting the New Year right with a good ole body cleanse, literally . . Like last year I am nervous going into this colonoscopy. I just hope I’m better. Taking 10 pills a day plus a Humira injection every two weeks it starting to show its effects. My hair has officially stopped growing everywhere, and the hair on my head is still falling out 😦 Also, I have noticed open sores around my neck and chest, looks like I have freckles. . . I really would love to get off these meds! And for the first time in years I have a cold, “perfect timing” to be sick during the holidays and days before a medical procedure . . my body is tired.
Remaining hopeful and living one day at a time . .
This past week has been a true test for my body because I’m totally torturing it . . . ever since I landed back in DC last Sunday evening and went to work the next day, I have barely rested. Wednesday night I once again fell asleep in my work clothes, but I got a little help from a pink punch martini. And my social drinking continued with happy hour Thursday night, and a housewarming party last night. This is the most social I’ve been in like a year, and for me to be invited, RSVP yes, and actually have the energy to show up, is definitely improvement.
But when you have active IBD it will always remind you,”I’m still here”. After running errands this morning, I have been in bed since 2pm and it’s now 10pm. However, maybe my fatigue today might not just be from having IBD, I might actually be hung over lol Either way, my stomach is fine which is happily surprising. Lately when I do drink, I only consume vodka, gin, or dry white wine. I read somewhere that those type of drinks are gut friendly and I have to agree.
I was totally out of my comfort zone last night only knowing one of the hosts at the housewarming party. My anxiety was at a dangerous level at first , I was standing in the corner for a bit playing with their cat. Then my friend asked “What are you drinking?” and listed the many options. Looking around I noticed the vast amount of wine bottles on their kitchen counter and the stash in their fridge, and swallowed hard thinking this is going to be a “ruff” night. After my 2nd cup of wine those butterflies were gone and I started feeling comfortable and talking to almost everyone at the party. Liquid courage is a beautiful thing 😉 Then peer pressure appeared, my friend the host, wanted to say cheers by taking a shot of vodka. Her friend who grew up in Ukraine happened to bring a bottle of peppered vodka. Of course i said no at first, I already had about 3 cups of wine, but I gave in and thought well it has to be the good stuff, and I’ll admit it was very smooth. After that drink I was pretty much done and hot!! I was like I haven’t been drunk in so long, it was a relaxing feeling. I silently said to myself, “I miss this feeling”. I was never an alchie, but I have always enjoyed drinking and wine/beer festivals, so when I was diagnosed I was sad knowing that part of my life would have to “end”.
I’ll admit I’ve been feeling better lately, maybe Humira is working for me? I’ll know for sure in a few weeks, have a colonoscopy scheduled right before New Years just like last year, fingers crossed for remission!
Plus a cocktail is my current situation and I don’t care!! lol
I’m stressed out 😦
I’m flying to Texas for the weekend, a quick weekend getaway. I’m excited and scared at the same time. Excited for BBQ and real Mexican food and scared to eat BBQ and real Mexican food . . . sighs . . I gotta be cautious this weekend, but I think I’m prepared. Of course I packed my meds, poop-pourri, cottonelle wipes, and Imodium.
I’m currently sitting in the airport and my dilemma was what to eat for an early dinner. I decided Greenleaf’s would be “safe” but then I ordered a Panini with turkey breast, avocado, chipotle mayo, and pepperjack cheese on multigrain bread with a frostie. . .
I might regret this . . but I have an hour before boarding. Hopefully if I need to go, its before I get on the plane. Wish me luck!!
“I woke up like this!” . . . literally. Anyone else have a crazy alarm system?
I haven’t been sleeping well this week and woke up late yesterday. Decided to go back to my old alarm system when I was experiencing a flare, and yes I still hit the snooze. Goal is to be up by 6:30am. Without these alarms, on a bad day it would take at least an hour for me to get out of bed. . . severe fatigue is no joke.
I know its supposed to be one photo a day but I had to share my experience at Bed, Bath & Beyond last night. I’m traveling to Texas for the weekend and had to stock up on my poo-pourri. BB&B is the only place I know that sells it and I almost had a panic attack. I could not find any bottles!! My anxiety hit 100 knowing I will be traveling and possibly using many public restrooms this upcoming weekend . . . until I saw something familiar.
sighs . . my saving grace!
They only had 4 bottles?!?! This has to change, but happy I was able to buy one!! #winning #littlevictory
It’s been a week since my last post and not a good one. A very stressful, exhausting week it has been. New job has officially started to stress me out, but for the first time in my career its not over drama, just a lot of freaking work. But with my condition any amount of stress is bad, even if in my mind I categorize it as “good stress”. As a result of this stress and lack of sleep due to Game of Thrones binge watching (I think I have a problem lol) I had a serious flare attack. I went to the rest room at least 10 times that day at work, and had my first case of diarrhea in 7 months . . . it was horrible. After going to the bathroom 3 times in the span of 15 minutes I became desperate and hoped the little convenient store in our building had Imodium or Pepto. By the grace of God they did and it worked!! Then 2o minutes later I experience spasms of upper right abdominal and rectum pain, could not sit in my chair. . . Found some extra strength Tylenol and the pain went away. All that happened in the span of 8 hours, by time I got home I passed out, my body was exhausted.
Last weekend I took my Humira injection and the next day I noticed this huge black bruise on my upper thigh, right where I had the injection. Is this normal? lol It was a first time for me. No pain or swelling, just a huge black bruise. .It’s starting to fade away but still noticeable . Did I do something wrong? I usually inject in my right thigh but I have so many little dark circles from previous injections I decided to start with a fresh leg . . . I guess that was a mistake.
Unfortunately my stress level has doubled in the past couple of days due to some roommate drama and as a result today I had diarrhea once again. I got so worried it was obvious to my colleagues that I decided to use the restroom in our building lobby a couple times today . . . sighs . . its been rough lately . . I thought my colonoscopy scheduled for next month would be a breeze and Remission!! Now i’m not so sure . . .
Hopefully this holiday weekend I will be able to finally relax.
When you tell someone you have a chronic illness what is the typical response? “Aww I’m soo sorry, but you don’t look sick?” “You look good and at least you’re skinny” have been common responses for me. I always felt the need to change the subject as soon as a person say , “but you look really good”. I always took that response as “Why are you complaining?” . . . . Maybe I’m being oversensitive, but its hard to connect with people that do not live with your illness. So the response of “well you look really good” is their way of being sympathetic because they can’t relate. Unlike a response of , “Wow I can’t imagine the pain you go through but thank you for sharing and if you ever need anything . . . . ”
I found the below video which I think perfectly illustrates the difference between empathy and sympathy, do you agree?