Med Free? . . .

It’s been a couple of weeks since I saw my new GI and he was perplexed. He said to me, I do not think a person with Crohn’s disease can have their colon completely healed after a year of treatment with Humira. I don’t think you have Crohn’s . . . . . WEll, WHAT THE HELL IS IT?!?! I silently screamed! He didn’t deserve my anger, he was not the person that  diagnosed me and I appreciate him making the effort to discover what is wrong with me. I plan to call his office this week to make sure he has received all my test/lab results from the past two years because I deserve to know what is my diagnosis. He even questioned why I was put on Humira  . . .  . .woah . . . woah . . . pause . . .  prior to Humira I was popping steroids like it was candy in order for bloody stools to stop. I was living with a moon face and could barely sleep, so when I started Humira many of those symptoms disappeared in the first few months and I am forever grateful. But then my GI made a good point, he said “I think you were on Humira for too long, the last thing I want is for you to be over medicated”. This past year was not glamorous, I  had three bacterial infections that stopped me in my tracks, not used to getting that sick that often. Then he said, “So what do you think about stopping Humira?” I said, “okay let’s try it”.

I initially hesitated at the thought of stopping Humira, why would I want to stop a drug that made me better? However, Humira can do its own damage, it has many risks and if I do not need to be on it, I will gladly stop. It’s been a month with no Humria injections for the first time in over a year . . and I am doing okay so far. Actually the only medications I’m taking now is, Omeprazole for GERD, birth control and multi-vitamins, crazy right?!? In 2015 there was a point when I was taking 14 pills a day, I am blessed.

I am trying to enjoy this time of true remission and have been a little reckless, had my first beer in 2.5 years this past Superbowl Sunday, it was delicious but regretted it all day Monday, I think I was hungover . . lol I haven’t been eating that healthy  which is something I’m working on, been hella stressed because of this job. The last time I was this stressed out was before I was diagnosed with IBD, as a way to cope I was jogging about 6 miles a week . . I am no where near that fitness level now, but this March I will be back in a gym somewhere.

While my GI is figuring out what exactly is going on with me,  I’m gonna enjoy  this “healthy time” and try not to stress myself back into a flare. Wish me luck!

Tonsils Takedown Round 2!

It’s round 2, I’m backed against the ropes, bruised and exhausted . . . sighs . .

Last Wednesday I felt so much better that I stupidly went to work for a half day, but I felt good! Slept well, throat wasn’t sore, I was happy. When I left work, I went to the grocery store, cooked a pot-roast with potatoes and cleaned my kitchen, by 9pm I was tired. As I sat on the couch watching TV I started itching; immediately thinking it was stress and I thought it would stop soon. An hour later, I’m scratching my chin so intensely that the left side of my face is red. For those of you that don’t know what I look like, I am a dark skin black female so for my face to  be red . . . that’s a problem. So since it was now after 10pm and I was itching all over, I called Urgent Care and told them I believe I am having an allergic reaction. They told me to stop taking the Augmentin and take a benadryl if that doesn’t work, come back immediately . After I got off the phone I frantically searched my apartment for allergy meds, but could not find any!  Once i realized I was SOL it was 11:15pm, the skin around my eyes and lips were burning, so I went to the nearby Safeway that claims to stay open until midnight, but the doors were locked. I got back in my car and drove around looking for a 24- hour something! About 2 miles away I found a  24-hour CVS, thank god! Popped a benadryl, and was able to finally sleep closer to 1am . . . .obviously I didn’t go to work the next day.

Thursday morning I went back to Urgent Care and they prescribed a new antibiotic something called “Z-packs” for short. But I didn’t trust it . . .. It will be a year next month that I’ve been living in VA and I have yet to find  a Primary Care Physician (PCP) , which is kind of a good thing, it shows I haven’t been that sick. My PCP is in Maryland about a 35 min drive away without traffic. After I left Urgent Care I called my PCP and asked if I could see her soon, they said sure and I was able to get an appointment that day at 3pm. I tell my PCP of my life experiences in the past few days and she jokes with me saying, “See! you should have came here first, those people in Urgent Care don’t know what they’re doing!” . . . I laughed and said, “Well you guys were not open on Sunday when I could barely swallow” lol. After joking, she said lets take a look at your throat, that smile immediately disappeared. “Krystal your tonsils are still severely swollen, you have to take that new antibiotic they prescribed with a benadryl just in case you might have an allergic reaction.  And I highly suggest you go see the ENT.

Great! . . .  freaking wonderful!! . . . .

She took a few swabs of my tonsils and blood work and I’m currently awaiting the results. Due to the horrible traffic since it is the DMV and a day before the presidential inauguration, it took me 2.5 hours to get to my local pharmacy back in Virginia. By  the time I arrived, my throat was severely swollen I could barely talk.

Today was the last day of taking the antibiotics and my tonsils are still huge and my throat still feels swollen. I cannot afford any additional health expenses. I’m still paying off the root canal and crown that was barely covered by my dental insurance, a $2100 bill. If tonsil removal surgery is not 100% covered, I’m not doing it. I see my PCP again on Friday and if the swelling does not go down by then and tonsils are still infected . . . I just might cry . . . lol

Life is so crazy! My tummywoes are finally calm and I’m seeing my GI this week to discuss possibly going off Humira. But in the past few months other parts of my body  are just falling apart . 2017 has been something else already!! smh

 

Tonsils Takedown!

A sore throat is very uncommon to me especially if it last more than a day, I knew there was a problem. It’s the one symptom I have had lately that I could not connect to crohns, but ignored it anyway at first, thinking it was allergies/sinuses.The sore throat started Saturday night and was still there when I woke up on Sunday, but still decided to go on with my day. Met a friend for brunch, ran some errands and realized my throat was still sore and only gotten worst throughout the day. By 6pm on Sunday, I could barely swallow. I quickly did a google search for an urgent care center, and only found one that was open on a Sunday, wtf??

Walking from the parking lot to the check-in desk I was out of a breath, yeah . . . something was wrong . . Young lady at the check-in desk asked if I had problems of breathing and/or chest pains . . I said both. I had reflux issues earlier that day and I was out of breath . . I didn’t lie! but I later understood why it was important to ask. After waiting 45 minutes, I meet with the doctor and the first thing they said was their X-ray technician was gone for the day, but you can come back tomorrow to get an x-ray done. First thought, how is this a 24/7 urgent care center?!?  Secondly, it cost me a $50 co-pay just for a visit why would I come back?!? . . . .yes I am very cheap, because I’m broke!

They took my vitals and of course my blood pressure was high . . sighs . . . I hope its just stress related but my last few doctor appointments my blood pressures has been consistently high. I’m worried because hypertension does run in the family. I tell her my symptoms and before examining me she believed it was sinusitis, which I agreed, but then she told me to open wide and her response, “Your tonsils are HUGE!, oh my gosh!, open again! Wow” ..  I wanted to laugh but it hurt so bad lol They did a throat swap to test if it was strep, but the results were negative. She determined it was tonsillitis, which is something I had as a kid once, 20 years ago.  I was given a prescription for Augmentin and because it was Sunday night, no pharmacies were open, I had to wait until the Monday morning.

When I woke up on Monday it was like I ran into a brick wall. . . body aches, chills, and could barely breathe. When I was finally able to get out of bed went to my pharmacy to fill my prescription, still can’t believe it took an hour, maybe because it  was MLK day and they were short-staffed *shrugs*. As soon as it was ready I popped that pill like it was candy and was knocked out 1 hour later. Since then I’ve been home sleeping and drinking gallons of hot tea. I did a half day at work today, regret going but I was starting stress thinking about it since I have no back-up support. It is Day 3 on antibiotics and still have a sore throat, and dealing with crohn’s-like side effects, diarrhea, bloody stools, I had bad flashbacks. I haven’t been this sick in a long time and absolutely hate it! This is the 2nd viral infection I’ve had in the past year, does Humira play a factor?

Remaining positive and hope to be well again very soon!

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!

 

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. .  .