New Year New Beginnings? . . .

Happy New Year! Another year and another colonoscopy. . . For a 2nd year in a row no inflammation was found in my colon nor rectum. My colon looked so good my new GI wants to take me off my last medication of Humira. . . Holy Crap lol In a way i’m not really excited, is that weird? It took a good 2 years to adapt to this new lifestyle of being chronically ill. Going from barely taking multi-vitamins to up to 14 pills a day and being admitted to the hospital, deep depression, side effects of steroid use . . . to let’s take you off everything . .wowzer

I guess my fear is relapsing if i’m taken off all medications. I had a little flare-up this year hence the reason why I had another colonoscopy. But to be completely off is kind of scary. I have heard how the disease can go dormant for periods of time, I read one woman had  a flare up after 20 years of no symptoms, this disease is something else.

I’m still awaiting the results of my biopsy but I don’t expect anything, think it was taken as a precaution. I need to be grateful and enjoy this moment. I am finally healthy again mentally and physically, starting to look for a new job, new place, recently connected with family members (ancestry DNA test is amazing!), 2017 might be a good year after all . . . we shall see!

 

My current mood . . . 

I’m coming back! just gotta get through the next few days, but it’s nice to have good news for once! 2017 will be a great year! I’m making great 🙂

The fear of going under . . .

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.

Typical IBD struggle . . . .

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!

Can I have a drink? Of course! :)

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. .  .