In honor of Crohn’s and Colitis Awareness week, Let’s make #IBDVisible, make what’s under water visible!
I just had a good cry, I should sleep very well tonight! I was watching a show called Code Black, thinking it was a typical ER drama I had it on my TV as background noise to tune out Ms. Godzilla that lives upstairs (can’t wait until this lease ends!). As I was barely paying attention to the main story in this episode; a young cop having an explosive lodged in her leg, for some reason the story of the woman who went to the ER alone because she wasn’t feeling well caught my attention. She didn’t look ill, but why would she be in the ER? I thought to myself, I can relate! The day I went to the ER I remember my outfit vividly cause I thought it was cute and it was one of my best hair days lol, I didn’t look sickly at all. Minutes later she’s in a hospital bed stating it was difficult to breathe and fussing with her brother. Her brother asked if she was really sick, she responded I wouldn’t be here if I wasn’t and then she mentioned it was her Lupus. . . I slowly put my laptop to the side and gave the show my full attention. It’s rare when television shows discuss invisible illnesses such as autoimmune diseases so I was weirdly excited.
The episode returned back to her story by discussing her CT Scan results. The doctors stated she had a Pulmonary Emboli?!? I think. The blood clot on her lung was so big they had to rush her to surgery. The fascinating thing about this episode is that woman with an explosive bullet in her leg survived, but not this woman with Lupus. She died . . . and I started crying. I don’t know how realistic this story could be but, she went to the hospital with a chronic illness and she knew something was seriously wrong. It’s a scary feeling right? When I went to the ER I knew I could no longer eat anything, but I didn’t really think of the risks with medical procedures, but anything can happen whenever you go under . .
I have always hated hospitals, my favorite uncle died in a hospital when I was a teenager. Being in a hospital have always been a fear of mine ever since his passing. When I had to get my gallbladder removed at 25 I was terrified. I remember asking my co-worker who was a minister to say a prayer for me. We were literally praying in her office. Before my first colonoscopy I said a prayer, when I was in the hospital I prayed hoping that, that night was my last night in the hospital. Every time I go under I say a prayer, you just never know and it’s odd I’m no longer terrified, I just hope for the best. When you have a chronic illness having multiple medical procedures become routine unfortunately.
I finally sought a 2nd opinion, found a GI in my new home state of Virginia (even though I’ve been living here for 8 months now). He immediately didn’t understand why I was taking Apriso and Humira, and told me to stop the Apriso. Thank God! I had stopped taking it weeks ago and it saves me $25 a month. But of course he wants to do a colonoscopy, got it scheduled for Dec. 29th. Third year in a row I’m having this procedure done before the New Year, it’s becoming a tradition. Since I had a flare up a couple of months ago when I’ve been on Humira for over a year, he wants to know why . . sighs . . once again I’m going under . . and plan to say a little prayer and hope for the best.
A week ago I attended onsite training at my job, total training session was 4 hours. Prior to the training, the idea of being stuck in a quiet room with people where I’m forced to be social for four hours spiked my anxiety. Not just for the social aspect, but the past couple of weeks I have had digestive issues and a recent fit with diarrhea, on average I was going to the bathroom at least 5 times a day. My secret spot became the lobby bathroom to avoid the shame of co-workers knowing who “blew up” the bathroom, sorry for the visual lol. Overall the training session went better than I expected until it was it was lunch time. . .
We were asked to pre-order our lunch so I chose a meaty chef salad that was gluten-sensitive . It was basically lunch meat and lettuce, but I forgot to specify the dressing and discovered the default dressing for this salad was Ranch dressing, I subconsciously smacked myself. Since I was one of the last people to return to room for lunch after a dash to the restroom and checking my emails, by the time I arrived everyone was eating I did not want to look like the odd ball refusing to eat, and was glad I ordered a side soup. I ordered a cup of organic vegetable soup thinking that would be safe but of course my order was mixed up, I received a tomato soup with cheese instead. That’s when my stomach started to ache, thinking about my GERD and the two hours of training remaining in this quiet room with 8 other people. I quickly observed the small group of us in the room and noticed everyone was eating all the food that was provided, someone was enjoying my soup! I just put the tomato soup to the side, saved it to eat for dinner in the safest environment, aka my apartment.
I was glad I missed half the time allotted for our lunch break so I could no longer torture myself by eating the ranch covered salad. When it was time to re-group I quickly put my salad and soup aside in the back of the room however, I noticed that whenever someone stepped out they quickly looked at my half eaten salad and cup of soup uneaten. I’m glad no one said a word, I was okay with being quietly judged.
Nearing the end of the training session, my stomach was killing me, I had to go. I continuously looked at my phone counting down the minutes that I could escape to the lobby restroom, but people kept asking questions! I’ve noticed I like to torture myself. I could have easily said I have to go, meeting in 5 minutes but no, I sat there began to sweat and shaking my leg to distract myself from the pain I was feeling, and of course we went 5 minutes over. When it finally ended and we all clapped and said goodbye, I ran to my desk to get my Mask spray and quietly walked to the elevator like nothing was wrong. Got to the lobby and ran to the restroom, first time I felt relieved that day . . . literally . . I hate ranch dressing!
I just realized that I have not had a cup of coffee or a beer in two years! That’s so crazy!! But, I have become a “wine connoisseur” lately, it doesn’t bother my gut. In addition to vodka and gin, wine is one alcoholic drink that does not make me violently ill.
I have discovered a new pastime, Winery Day Trips! I’ve been to 4 since July. It’s low energy, good time with friends, and bougie as hell and I love it! lol It’s one of the few times when I am relaxing and having fun. After an entire day of drinking a person with a normal immune system would be exhausted so how do I do it? I don’t! I still suffer, but there are little things I do to prevent me from becoming violently ill.
This past weekend was my 3rd trip to a winery and I prepared by buying Gatorade, Imodium, and granola bars. Staying hydrated is key, I purposely drink Gatorade all day and the next. Before leaving my apartment I did not eat anything but a granola bar, being on a bus for more than an hour I wanted nothing to irritate my stomach, but brought Imodium just in case.
Throughout our winery trip, I had a glass, then another, and many more followed, while snacking on multi-grain and butter crackers, salami, and various dips, luckily I was okay. The killer was the hibachi grill after the winery, my stomach looked like I was 7 months preggers on my way home . . . must have been the garlic. I spent the next day on the couch with painkillers and drinking Gatorade once again . . .But I felt pretty good today, proud of myself that I can still have a little fun 🙂
Still waiting on the blood work results . . . sighs . . as always remaining hopeful and taking one day at a time. . .
The past two months have been stressful and insanely busy. Most of my time has been devoted to this job where our Executive Director occasionally vents to me about our Board of Directors, and I immediately noticed my stomach starts to hurt. Minutes later I develop a headache. Ever since I was diagnosed with IBD, I have learned how to better handle my stress, but I now believe people stress me out too. A friend recently said to me, “Krystal I didn’t know you had so many issues at your job” They’re right, because I refuse to talk about work outside of work, it was something I noticed that would cause me significant stress. The stress at my job is not drama related (anymore, no longer have to work with the office bully lol) but just a lot of work and a major disconnect with the Board. It’s been hard to make change and I feel like I’m not working smarter, but working harder. So everyday I go home physically and mentally exhausted.
Severe fatigue has been a problem for me for the past 3 months and it’s getting worse every day. Every week lately I either fall asleep on my couch or wake up in my work clothes in my bed after an attempt to just “lay down” for five minutes. I am frequently up around 3am to brush my teeth and wash my face. In addition to the fatigue a familiar foe has returned, bleeding! Once I noticed it happened more than one time, I immediately contacted my GI and went to the LabCorp this Monday to get blood work done. Frequent bathroom trips are becoming a regular occurrence lately, so I’m worried.
I partly blame myself, haven’t been taking my meds everyday like I should. Do you ever get “meds fatigue”? Some days I have genuinely forgotten to take my meds. I’m tired . . .
As always, I remain hopeful and taking one day at a time . . .
So it’s Open Enrollment time! My favorite time of the year! (sarcasm) . .. I started my current job last July, 3 months after I was discharged from the hospital. Since I was still paranoid and finally understood the life of living with a chronic illness, I immediately noticed the premium plan was my best option which was $120 out of each paycheck. Well I just realized today, in late September, I haven’t met the deductible for my current medical plan in this past year. I guess that’s awesome? This past year I have had fewer visits to doctor offices and no increase in prescriptions . . . ..not too shabby.
My dilemma is should I drop to a lower level in medical benefits? Money is tight now and I need every cent to pay off my dental bills. My new Dentist thinks that I might have periodontal disease and I need like 3 new crowns . . . my immediate response to a proposed dental treatment plan of $7k+ was “Bitch Please” but all the medications, long term steroid use, and me putting off dental work to pay for other medical expenses has finally caught up to me . . . sighs . .
Since I’m starting to look for new employment anyway, I can deal with this lower tier of benefits for a temporary time? . . . Ugh, I need to make more money to pay of my medical bills . . . feeling frustrated.
For those of you that live outside of the DMV (DC, MD, VA) area NOVA (northern Virginia) has a reputation for having horrible traffic and drivers. I have been living in NOVA for 6 months and I have become that horrible driver. The main reason why there are so many accidents is because people have NO patience. As I sat at a red light waiting to turn weeks ago, I rolled my eyes to the loud honking behind me from the woman in the minivan. Then yesterday, when I had the green light to turn at the same traffic light, a car from the opposing traffic decided to turn too, so I slammed on my car horn. The entire drive to work I was mad and stressed and by the time I left work I was exhausted and preparing myself for the rush hour traffic. Then once I finally got home I had to deal with the noise of my neighbor’s squeaky door and Ms. Godzilla that lives above me. However, for some reason lately, at 10pm I get this sudden burst of energy and can’t sleep until 1am. I wake up exhausted the next day and do it all over again . .
Now let’s add an autoimmune disease to this daily routine. For four days straight I had all day headaches, thank god it stopped. I was definitely considering the ER. When I finally did go to sleep, I fell asleep in my work clothes, and routinely woke up to wash my face/brush my teeth 2am in the morning. In addition to the severe fatigue and headaches, I have also experienced acne, dehydration, and chapped lips, so I asked my doctor to get blood work done. I think I might be really anemic. It’s sad when you look forward to blood work so you can figure out what the hell is going on. I’m really tired . .. . I worked out for the first time in months last weekend, my body is still recovering, feels like I ran a marathon.
I have also noticed lately, I have no patience and lack of sympathy for anyone. No longer feel sorry for my neighbor upstairs, I’m sick of her apologizing for the loud noise when she keeps doing it, ready to move! A few weeks ago when I was 2 hours late to work because I could not physically get out of bed, I finally told my boss I have Crohn’s and how a late morning like today might routinely happened, I was surprised how nervous I was. He took it very well and revealed to me he has diabetes. This week we conductedinterviews for a new staff member and I noticed my boss profusily sweating during the interview. It was sooo bad he had a wash cloth in his pocket to wipe his face every couple of minutes, and stated he does not know why he’s sweating because he’s freezing. Afterwards he stated he believes it was a bad reaction to new meds. As he left work early for like the 2nd day in the row I was mad, there are many days I wanted to leave early for not feeling well. . . I was surprised at the frustration I felt at a man that is clearly sick and needs medical attention
I need a break . .. .