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.
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. . .
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 . .. .
Writer’s block is no joke! I’ve noticed how lazy I have become. I used to come home and write for hours, now I just lay on the couch watching TV, I can no longer stand it! I was recently inspired to write again after a conversation with my mother, stating how I haven’t been feeling well mentally and physically and the last time I felt this way was when I started this blog. So I’m getting back to TummyWoes because it is therapeutic and something I truly enjoy. And since there is a never a dull moment in my life, I have a LOT to write about. . . Hopefully writing this post will get me out of my funk . . .
To my fellow bloggers, how do you prevent a writer’s block?
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!