The past six weeks have been insanely busy and I never want to experience it again lol. Since the first week of May I haven’t had a free weekend since April. From a friend’s bachelorette and wedding, mom’s graduation, moving, and mini vacay to Jamaica I’m officially spent physically and my bank account is dry. But I’m not complaining, I can go on a ramen diet, I’m excited that I can eat ramen again lol. It’s crazy to think two years ago I would’ve declined majority of those events due to my poor health. So I have been grateful to be invited and healthy enough to go to each event. I am afraid to miss out. I feel like for almost two years I was at such a low health wise and mentally that I checked out of my life, I was in a fog . . This year is the first with no meds and complete remission, so I’m trying to do everything before this good health goes away *knock on wood*.
Even though IBD-wise I have had a clean slate this year, I’ve been sick in many other ways. For example my two spells with Tonsillitis this year, last time I had it was 20 years ago. I saw an ENT doctor and he stated if it happens five more times this year, then I’ll suggest you get your tonsils removed . .. WTH?!? In addition to my tonsils my teeth have been horrendous, still paying off dental work from last year, getting two crowns and a root canal is no joke. Thinking about getting a 2nd job to pay off debt, but I’m scared the stress and physicalitly of working two jobs would be too much for my body. I’ve had this random craving for ginger ale, would drink it everyday if I could. . . last time I had such cravings it was to help with my stomach and shortly after I was admitted to the hospital. I hope this is not an early sign of a flare up, fingers crossed.
Remaining hopeful and taking one day at a time!
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.
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.
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 😉
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 . . .
I’m a summer baby and love warm weather, and love it even more as I get older because it never causes hazardous conditions. Ever since I got into my accident I refuse to drive when there is any possibility of icy roads even when it comes to my health. I ran out of my Apriso pills yesterday and had every intention to refill the prescription but oh golly gee, I actually had a date for Valentine’s day, and it lasted longer than I expected, which was a good thing (will discuss in more detail in a later post). But sucked because the pharmacy closes early on Sundays, and its been snowing all day. As a result I have felt more tired in the past day, but i think it’s mostly due to my hectic, stressful lifestyle lately. Conference at my job finally ended and I can’t even relax, why is that?!? . . I’m still trying to figure that out myself. And I’m moving exactly a week from today and haven’t packed, I just have too much going on and no energy. As I continue to lay in my bed, and dreading going to work tomorrow, I’m reflecting on my recent lifestyle choices. I have been mentally and physically exhausted for the past two months, how much longer can I keep this up?
Life is already difficult, adding a chronic illness to it . . . just sucks
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’ve learned that Thanksgiving is no longer an enjoyable holiday, its such a scary day for people with IBD. I still ate everything in sight and totally regretted it, but it’s Thanksgiving, everyone suffers on this day right? lol Did anyone have an IBD friendly Thanksgiving? Would you be willing to share your reciepes? Might try a gut friendly, gluten-free Thanksgiving next year . . . it doesn’t sound appetizing . .
The below memes made me laugh, decided to share.
Hope you had a Happy Thanksgiving!! 🙂