When you discover you have a Chronic Illness (CI) it invades your life and takes over! “Sooo . . . starting today no more pizza, caffeine, gluten, soy, and in addition to this new diet, take about 10 pills a day . . . and forget about that vacation because all your money is mine!! Thank you!” CI says with a smile and a wink while it sashays away. “That bitch!” was my initial response as I sat in a hospital bed after my first colonoscopy.
Your chronic illness can sabotage your life and be your biggest bully. You think if I can conquer this I can take on anything, which is true. . . But I’m curious to how people with a chronic illness deal with the nasty people you encounter in life. People will be people.
The last couple of months I have worked so hard at my job that I allowed it to take over my life. Somehow I have been able to get up everyday and fight through severe fatigue, body aches, and fits of dizziness and nausea, by working 9-10 hours days because I care. Then someone recently approached me at this job and stated “Krystal be careful, watch your back, they’re waiting for you to make a mistake ” . . . . Um excuse me! I have not devoted all this time and the little energy I have for my work ethic to be questioned because someone has it out to get me. Soo they can keep watching . . .
Do you ever get emotional? Like why am I being treated this way? Why must my livelihood, my way of paying for medications be possibly jeopardized? Have you wondered that if those nasty people knew I was chronically ill, would I be treated differently, would they feel horrible for their actions? However, if revealing my illness is the only way I can be treated with respect, then this is not the place for me.
I recently turned 30 and I have realized that I am exhausted with dealing with the same drama . . . I still don’t know what I want to do in life but now I know what I DON’T want.
As always remaining hopeful and taking one day at a time.
Wow!! Thank you guys for all the support! I started this blog last year as a coping mechanism, a way of dealing with this major lifestyle change of having IBD. I started writing not knowing what I was talking about, but just documenting my daily struggles.
Thanks to all of you for joining me on this journey and the continued support.
Thank you! 😘
It’s been a while since I’ve written . . . its been a while since i’ve done anything for me. My life for the past few weeks has been devoted to sleeping, paying bills, and work. . . such a drag. When I do go out I’m completely exhausted.
I wish I could say, “At least I’m healthy!” . . . . . .but my immune system is no good! In the past 2 months I have had a case of food poisoning, UTI, and recently my 3rd cold of this year. I have never been so sick, so often. So what’s the deal?
I think it’s the Humira. The bleeding has not been present for about 2 months now, but I’m steady getting sick and my hair is thinning out. I’ve lost all my prednisone weight but due to stress I sometimes forget to eat and forget to take my meds. Yes I will admit it! I have been slacking in taking my meds, instead of 4 apriso pills a day i’ve been taking 1-3 pills, because I tend to fall asleep or genuinely forget. It’s odd . . .
Hips and knees starting to hurt, but my skin is beautiful, my body looks great, and I feel like im 50 years old. . . . so crazy!
As always I remain hopeful, taking one day at a time!
I have been living in my apartment for the past 4 months and what I’ve told many of my friends is that I wish I could just move my apartment, because my neighbors drive me crazy. Neighbors across the hall have too many visitors and smoke a lot!. And the older woman that lives above is always moving furniture late at night and early in the morning. I’ve only spoken to her once before bumping into her today.
I walked to my door and she stopped to say hi, I felt I looked childish with a lollipop stick sticking out of my mouth, but taking it out would have been inappropriate I think lol Any way, she introduced me to her sister and I re-introduced myself, then she proceeds to apologize for all the noise she makes at night, I immediately said no worries, even though I was happy that she acknowledge it and apologized. She then told me she’s on dialysis and her treatment is at night and showed me her stomach where I assume she inserts the treatment. All this time I thought she was moving furniture, but I believe she was actually moving her machine. God I felt bad, and all I could say is that I’m soo sorry to hear, it then got quiet and I could see the sadness in her eyes, it broke my heart. Since I’m the type of person that hates awkward silence I ended the convo by saying it was good seeing you.
As I write this I’m getting teary eyed and just grateful that my condition is not worst. You would think as a person with a chronic illness I would immediately be more empathetic than others but its still hard seeing people being sick. I feel so silly and immature thinking all this time she was a mad old woman trying to make my life miserable. You just never know . . .
I want to give her something, or drop something at her door so she knows I’m here if she needs help. Any ideas? More than ever I feel propelled to help others who are sick, I know that feeling of loneliness.
As always I take one day at a time and remain hopeful.
I don’t know why I find this so funny, but it’s soo true!
I have now accepted that my symptoms will always persist.
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 🙂
At my current job the air has always been an issue. Since last July I have had to wear a fleece in the office in order to stay warm. But the past few months have been ridiculous. For some odd reason, when it was 40 degrees outside a couple of weeks ago, the AC was on in our office. Why is the AC on in March ?!?!? I remember heading outside and realizing the our office was slightly warmer. As a result everyone in my office has been sick at least once. Even my former boss who thought she had just “allergies” discovered it was actually pneumonia, freaking pneumonia?!?!? which is like death to me. .. of course I freaked out because I wasn’t feeling well. Had an appointment with my GI shortly after I found out and discovered I was walking around with a fever?!?!
A week after all this drama it was still freezing cold in the office. I was wearing a blouse , sweater, and a scarf and I was still cold, and experiencing my 2nd cold in 6 weeks. At my desk all I could hear was people sneezing and coughing, then I looked at the dirty carpet thinking when was the last time they vacuumed? Ummm this office is dirty . . . hence the reason why we’re all getting sick, ummmm. . . . I can’t get sick, i have an autoimmune disease, I’m taking drugs to lower my immune system. I stood up, tighten the scarf around my neck and walked to the front desk to complain how cold it was and asked for the office supplies catalog, I’m going to order a space heater. .
Surprisingly there were space heaters in the catalog and I thought, “no harm in asking”, when I walked into my boss’ office. Why should I buy one? I can’t use it in my apartment, it is stated in my lease space heaters are not allowed and the office was not a safe environment for my health. Even if my boss rejected the order, they better fix the air or I would certainly get a doctor’s note.
Talked to my boss about it, he said “sure, I’m freezing too!”. I was like wow thanks buddy! So I ordered the space heater with my supervisor’s approval but it took over a week to get to me? Come to find out through the grapevine, it was rejected and my boss nor myself was notified. Umm wtf?!? Like I totally get if it was rejected because of a safety hazard but no notification and then it magically appears?!?
By the time my space heater arrived the air was miraculously fixed, haven’t worn a extra sweater in days . . . hmmm . . You’re welcome 😉
Lies . . . Lies . .. the Lies I tell!
After a very stressful week the new boss took me and my coworker out to lunch last Friday. I was asked by both where do you want to eat, I just said it doesn’t matter. Since I work in a very corporate and fancy area I was pretty sure all restaurants in the area had a variety of items on their menu. Then my co-worker mentioned Maggiano’s, I said sure and told my boss we wanted to go there. He said sure, “I can eat anything, I said me too!” As soon as I said it, I swear my stomach growled. I immediately felt guilty and went back to my desk to look at their menu. I started screaming to myself, “Why of all places would you agree to go to an Italian restaurant, what can I eat there?!?!” Looked at their menu and found a salmon and avocado sandwich, my best option, I was relieved and ready to go.
We arrived at the restaurant and the waiter mentioned to please let her know of any food allergies and we do have a gluten free menu . . . . I bit my tongue. I didn’t want it to be a conversation starter as to why I’m eating gluten-free food, such conversation could lead to me revealing my illness . . which I am still uncomfortable with telling my co-workers. I ordered the salmon sandwich and was grateful the salmon was grilled. As a side, I had potato wedges which I thought would be risky but stuck with it.
After the meal I was happily full and no TummyWoes, I was overjoyed. Back at my desk and exactly 30 minutes later I had to run to the bathroom, thank god for poopourri 😦
It was good while it lasted.
I have been dreading February 2016 for the past 6 months. It was the month of my first big conference at the new job. ( I guess I did well since I’m still employed). Also, I had to move because my lease ended this month. So as you can imagine stress was at an all time high. And when you’re highly stressed and have IBD, what can happen?!?! A Flare-Up!! You are correct! Remission has been gone for the past month, and I’m being irresponsible because I have not told my GI. . . I don’t know what I’m doing and why I like to play games with my health, but I don’t have any leave and I just moved to 1 bedroom apartment, I’m broke lol And I can’t afford any new medical expenses. I haven’t been to the dentist in almost year, because i’m scared of what they might find and how much it’s going to cost me. Ever since I have been diagnosed with IBD, I have a genuine fear of all doctors. After spending last year in and out of doctor offices and my first hospital stay, i’m trying my best to avoid all white walled rooms. Thank goodness my walls are grey at the new place. . . sighs.
The bleeding appeared again about a month ago, shortly after I weaned off the prednisone. And during my stress peak it looked like I was on my period, bright red. Now the blood is not as much, so maybe I’m getting better? . . . Either way I should still inform my GI ? . . . sighs . .
People are starting to worry about me at the job. Especially now that I have had a cold for almost a week now. It’s getting harder to keep my illness a secret . . .
As always I remain hopeful . . .