A bad day can be really bad . .

Another busy stressful week, can’t wait until this conference is over at my job, so exhausting. As a result of the stress I saw blood for the first time in months . . . sighs . . . can’t sleep, felt nauseous for a few days and hard to breath one day. I think I was about to have an anxiety attack.  So I started drinking some wine and taking a nap whenever I can and that has helped, and I haven’t seen blood since. I really never know what’s going on with my body, I just take it one day at a time.

Since I live in the DC metro area, we have been hit by the storm of the century!! Blizzard 2016! And I’m so over it lol Especially after my experience Wednesday night.  Instead of going straight home Wednesday I decided head to  downtown DC  to my special pharmacy to pick up my humira injections. With 20 minutes until the pharmacy closed I got completely lost walking around  and then it started snowing. Completely frustrated and tired, I headed back to metro and was stressed thinking how am I going to pickup my prescription before the blizzard.

I got back to where I parked my car and started driving to my apt which was 2 miles away. The snow started to stick and as I drove I saw an SUV literally parked on the sidewalk, as I stared in shock and slowly drove by I felt my car start to slide and tail spin. “Great!” was the first word that came out of my mouth, as I started to move my car back to the right so I’m no longer blocking traffic, another car hits me. Now my nerves are shot, and a piece of my car is in the street. . once I again i say “Freaking great!” Luckily I was okay and the other driver was too.  We exchange information , his car was fine and he drove off.  I should’ve done the same but I didn’t feel safe driving. Car insurance stated if your car is drive-able we can’t send a tow truck. . . “Freaking AMAZING” is what I said.

Fast forward 6 hours later,  slipping and sliding with hundreds of other cars I finally arrived at my apartment after parking my damaged car a few blocks away. I was exhausted! During those 6 hours I was thankful for the little bit of water I had that I used to take my pills. Also my leftover salad from lunch that i ate with my hands . . it was just a really bad day.

I took off the next day and was finally able to get my humira and other necessities for this blizzard. I really wish I could completely relax ,but thinking of all the work I can catch up on, it sucks I have the ability to work remotely. . . I’m over this and the snow!

 

2016 will be different! . .

I really didn’t intend to take a little break after my remission post, but I was exhausted.  Instead of napping after my colonoscopy I stayed up and ate myself into oblivion, and was exhausted and constipated for days. Didn’t feel better until New Year’s Eve and of course I wanted to go out, but due to me just recovering from a cold and a colonoscopy, I was starting to think it was not the best idea. And since plans were still undecided it was starting to stress me out; made my stomach hurt lol, I decided not to go out. So my mom invited me to go to church, and I initially hesitated because I am not the most religious person, but why not start the New Year in a positive environment. I went to church on New Year’s Eve and it was one of the best decisions I made. I left feeling better, mentally, and more optimistic about my future  . . . I kind of wish I would’ve made an effort to go to church more often last year when I was really depressed, but I spent many Sundays in bed.

I was very excited about the news of remission, it means we found a drug that works!! Since I’m still fairly new to having this disease it was hard for me to grasp that in order to stay in remission I have to continue to take this drug (Humira). . For some reason, I thought remission was “Yay! no drugs” But remission doesn’t mean cured, these meds can’t cure IBD because there is no cure, and once that sunk in; I’ll admit I felt kind of sad.. I have come to accept that I will  be on medications for the rest of my life? .  It’s kind of scary, and is it safe to be on Humira for a long period of time? Will it continue to work? As usual i like to stress myself out over all the possibilities . .  . . I just hate being surprised. . .but I have no control over this disease.  Like my friends and family have said in the past few days, “Krystal take this as a positive, and tackle the issues when they come” . . . . This is something I will train myself to do!

Living one day at a time and remaining hopeful! Happy New Year!

Humira . . . ouch!! :(

As you can tell I’ve been very moody this week 😉 Life has been busy and to some blogging on a Friday night might seem lame, but it feels wonderful to just lay in bed, sooo tired.

On Sunday I had my first Humira injections and for those of you who are familiar, the first dosage is 4 injections, I did two in each thigh. Luckily, I had a nurse to help me because there was no way I would’ve been successful solo. It was an unpleasant experience . . . I wasn’t expecting the stinging sensation.  I have a high tolerance for pain (like many IBDers) but when the nurse told me to count to 10, I couldn’t . . my mouth was agape and I said loudly, “I was not expecting that!” The nurse chuckled, I was literally speechless and in pain, but I was able to give myself the remaining three injections under the nurse’s supervision.

To basically “stab” yourself in the legs and feel the meds slowly enter your system was not pleasant at all. After the nurse left, I got a little emotional thinking how am I going to do this? But I’ve been told you get used to the feeling, get used to the pain, which is something I have many years of experience doing. What freaked me out the most was seeing a little blood when I removed the injection from my leg . . . but it is a needle . .

Is it normal to not feel one of your legs right after? lol That happened to me. And the one thing I noticed this week at work is that I’ve gone to pee like 5-10 times a day lately. . . . that’s different, i’ll mention it to my GI . . .

New stage in treatment . . .

Holy Crap! You know you’re sick when you have your personal hazardous materials disposal container.

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I am learning to accept that IBD is no joke . . I might look “great” (as I’ve been told by many) but inside my body is literally attacking itself. Lately I’ve been eating everything in sight with no bloating or abdominal pain which is awesome!, BUT the bleeding is persistent and getting worst, and the fatigue has been no joke.  For the past 4 weeks, I have fallen asleep in my work clothes at least twice a week. Now, as soon as I get home I immediately put on my pjs. I sound like an old person!! Not fair!!

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Insurance has approved my Humira prescription for the next two years and my starter kit arrived the other night. To sound even more old, I’ve scheduled an RN home visit for my first injection. . I’m nervous but desperate for anything to make me feel better.

Sick of biting my tongue . . .

I think I’m an amazing actress! For the past month I have been bleeding everyday, severe bloating often, severe fatigue, and insomnia but somehow I am able to commute and work 40 hours a week, all with a smile on my face.  I should win an Oscar because I don’t believe the average person can do that. I’m surprised no one at the new job has asked if I’m okay, but I guess I use all the energy I have during the work day and pass out when I get home on my bad days.

I am no longer afraid of Humira, I now look forward to it! Anything to make me feel better. Trying to clean my room for the past month has been a struggle, the last time it was this messy was right before I was admitted. I just don’t have the energy. The other day I had to lay down after taking a shower, and last night I woke up around 3am still in my work clothes and laptop in my lap. Unfortunately, this is becoming a regular thing, I’m so exhausted.

I finally spoke with my Humira Ambassador, she seems really nice and helpful and sent me my Humira welcome package. When speaking with her she mentioned that I have Crohn’s Disease . . . I immediately corrected her and said, no I have UC . . . she responded by saying on the application my GI’s office submitted, they wrote down Crohn’s. I immediately rolled my eyes and barely paid attention to the rest of the conversation because I was slowly becoming frustrated. When I saw my GI briefly last month, he did mention crohn’s but i assumed he misspoke and confused me with another patient, I guess not. I sent an email to my GI’s office asking what is my diagnosis among other things, OF COURSE the PA responded and stated, I quote, “I​ ​completed​ ​your​ ​paper​ ​work​ ​with​ ​Dr.​ ​F.​ ​He​ ​felt​ ​your​ ​Colitis​ ​was​ ​more​ ​of​ ​a​ ​Crohn’s….”  What the hell does that mean?!?!? I mean let’s continue to play this game of what illness does Krystal have today! I would appreciate it if he would say, your diagnosis cannot be determined  at this time, but you have active IBD, I would respect him more for that. So out of frustration I responded back with the below message, a bit stern but I felt like it needed to be said.  And when probation ends at the new job, my first request for leave will be to see a new GI.

​I​ ​find​ ​it​ ​very​ ​surprising​ ​that​ ​Dr.​ ​F​ ​all​ ​of​ ​a​ ​sudden​ ​believes​ ​I​ ​have​ ​crohn’s​ ​disease,​ ​I​ ​think​ ​he​ ​might​ ​have​ ​me​ ​confused​ ​with​ ​another​ ​patient,​ ​which​ ​is​ ​definitely​ ​possible​ ​since​ ​prior​ ​to​ ​August​ ​31​ ​I​ ​have​ ​not​ ​seen​ ​him​ ​since​ ​I​ ​was​ ​discharged.​ ​​ ​In​ ​the​ ​hospital​ ​Dr.​ ​H ​stated​ ​that​ ​I​ ​have​ ​crohn’s,​ ​but​ ​Dr.​ ​F was​ ​quick​ ​to​ ​disagree.​ ​I​ ​guess​ ​I​ ​don’t​ ​understand​ ​how​ ​my​ ​diagnosis​ ​changes​ ​within​ ​months​ ​without​ ​any​ ​additional​ ​procedures​ ​since​ ​my​ ​stay​ ​in​ ​the​ ​hospital​ ​this​ ​past​ ​April.​ ​I​ ​understand​ ​that​ ​at​ ​this​ ​stage​ ​the​ ​treatment​ ​is​ ​probably​ ​the​ ​same​ ​for​ ​both​ ​conditions,​ ​but​ ​it​ ​is​ ​important​ ​for​ ​me​ ​to​ ​know​ ​what​ ​I​ ​have,​ ​or​ ​if​ ​Dr.​ ​F​ ​does​ ​not​ ​know,​ ​just​ ​tell​ ​me​ ​i’m​ ​undiagnosed​ ​with​ ​active​ ​IBD.​ ​​ ​I​ ​don’t​ ​like​ ​the​ ​idea​ ​of​ ​my​ ​GI​ ​guessing​ ​what​ ​I​ ​have,​ ​or​ ​changing​ ​my​ ​diagnosis​ ​every​ ​few​ ​months​ ​just​ ​because.​ ​I​ ​know​ ​my​ ​case​ ​is​ ​considered​ ​mild​ ​(is​ ​that​ ​still​ ​true?),​ ​but​ ​I​ ​have​ ​never​ ​had​ ​to​ ​take​ ​10​ ​pills​ ​a​ ​day​ ​or​ ​be​ ​admitted​ ​to​ a ​hospital​ ​ever​ ​before.​ ​​ ​My​ ​life​ ​has​ ​completely​ ​changed​ ​in​ ​the​ ​past​ ​9​ ​months​ ​and​ ​it​ ​would​ ​be​ ​nice​ ​if​ ​I​ ​didn’t​ ​feel​ ​like​ ​I’m​ ​the​ ​only​ ​one​ ​taking​ ​my​ ​illness​ ​seriously.

Humira it is . . . .

Earlier this week I FINALLY saw my GI, even though it was only for 5 minutes. .The PA and my GI both agreed that the next step of my treatment is Humira.  Since I’ve been bleeding for the past month and the low dosage of prednisone has had no effect, and Apriso has never worked (I believe), they believe Humira is the next best thing.  My application has been submitted and I assume I just wait to hear from my GI office to pick it up or it’s being shipped to me? Of course I’m confused as always. I’ll send an email to followup.

In the meantime I was given a practice pen and a pamphlet to read, still haven’t read it just tossed it to the side. . . I really should care, but I’m not excited.  To be honest, I rather take pills any day over an injection. It’s like my condition is at a new level when pills are no longer working, its scary.   The PA highly suggested that I come in for my first injection but of course her earliest time is 8:30am, I need to be at work by 8:30 . . . so I said that’s not going to work.  I can’t take time off right now. I’ve been at this new job for 6 weeks and they know nothing about my illness. I would like to keep it that way for as long as I can.   Also, I don’t believe its smart to get an injection of a new drug and go straight to work, I might have bad side effects. I’ll just have to be a big girl and do it myself, I think I’ll be fine. Also, I have been playing phone tag with my Humira Ambassador. I plan to take time to actually speak with her, but its difficult to have any private conversations at this new job . . I’ll have to figure it out.