Moon-face? . . . .

Hello World it’s me! The below picture was taken this past weekend for Halloween, I was a fancy¬†Witch ūüėČ

KQ halloween 2015

I think it’s a nice picture of me, but I immediately noticed how fat my cheeks were. I believe its obvious I’ve gained weight, around this time last year I was 14 pounds lighter. This is the heaviest I’ve been since I was a young teen. There are many factors that have contributed to my weight gain. I’m¬†no longer physically active, new job is in the middle of nowhere so I spend most of my days¬†sitting or driving lately. However, I will say the biggest factor are these meds, especially the prednisone. I’ve been on¬†and off¬†prednisone since March, maybe the long term use¬†is starting to show. ¬†A few have said the weight gain looks cute on me and¬†barely¬†noticeable since I’m tall (I’m 5’9) but when your clothes are tighter and you can’t afford to go shopping it sucks. . I guess I can’t complain, at least I look “healthy”,¬†¬†but it is amazing to see how the drugs affect you physically and mentally.

It’s crazy that 6 months ago I was afraid to eat anything ¬†to now eating everything in sight and never feeling full. I’ve already eaten dinner and about to get a bowl of cereal because I’m still hungry!! I’m about to stock¬† up on¬†Bene-fiber, I need something to help me stop eating so much, frustrating!!

The below picture¬†was taken¬†later that night,¬†right before I was about to wash my face (mind the hair scarf, it was bedtime :)) I was like wow¬† . . . moon-face? had to stop and take a selfie. I think it’s obvious. My profile pic/gravatar is an old pic, but I was that same weight for many years. Looking at the two, it is a difference.

KQ moonface

Can’t wait to get off these meds!! . . . now I’m hot . . lol

New stage in treatment . . .

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

tw5

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!!

tw4

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.

Not good news . . . . :(

Have you ever stared at the ceiling to prevent tears from falling on your face? To avoid letting someone see you cry? That was me today. It wasn’t like I was shocked¬†by the news, but I felt like I reached my breaking point.

After two weeks of horrible symptoms I finally got to see my GI, he said two words that I hoped I would never hear, “Prednisone & Remicade”. ¬† ¬†He stated how my condition is getting worst and in order to force my symptoms into remission he prescribed me prednisone (aka “the devil”, the name many IBDers call it). Thankfully its not a high dosage, and I was told to take it until I start feeling better and eventually stop. ¬†Once i’m off the prednisone, he would like to start remicade in order to maintain my remission. Unfortunately, Remicade is not an oral prescription, it can only be done through IV infusion, which means a trip to the hospital for 3-4 hours, every few weeks. ¬†. . sighs . . . I don’t like hospitals.

Before my follow-up appointment in one month, I have a lot of lab work. More blood work, testing for tuberculosis and hepatitis, and a stool sample. The process of collecting a stool sample is hilarious to me, but I won’t gross you guys out lol ¬†Also today,¬†I got a call from my primary physician about my blood work results, she stated I have Vitamin D deficiency, and wants me to buy over the counter Vitamin D supplements. I’m not surprised, in the past week I have had no energy and ¬†my body aches all over. So . . . with the addition of prednisone and Vitamin D pills, my pill intake has increased to ¬†. . . 14 pills a day!!!

It was truly a sad moment in my GI’s office,¬†we both looked at each other with sad eyes ūüė¶ ¬†I would write more, but I am completely exhausted.¬†Really hoping I feel better soon.

Medicine Haul . . .

For those that have an IBD¬†the amount of pills you take daily can be overwhelming for most. When you tell¬†people, “Yeah I take 10+¬†pills a day” . . and hear a gasp or OMG! You feel just as sad, but it eventually becomes another daily routine. ¬†It’s not fun or easy, but it needs to be done in order to force your¬†symptoms into remission.

I found the below video on YouTube of a brave young woman who has been living with colitis for over a decade. She gives viewers insight into her daily life living with UC.  All credit goes to  her.

Maybe one day I’ll create my own medicine haul.

Rx drama . . . again . . .

I’m MAD! I’m mad with Giant¬†pharmacy, CIGNA, and my GI. ¬†I called Giant last¬†Wednesday¬†to refill my Apriso prescription. I didn’t hear anything from the pharmacy for two days so I called, they stated they cannot refill my prescription until February 18. ¬†I calmly asked why, they stated ¬†we provided you with a 30 day supply for the prescription that was written. With my insurance they are not allowed to complete a refill until the 30 days expired. ¬†. . I never knew that was possible, I thought when you NEEDED to refill a prescription, it was done! I guess I understand the caution, because people can become addicted to their medications and could¬†sell/distribute their drugs . . . I get it! But that’s not my situation, and it’s unfair for CIGNA to put people in this predicament.So when I calmly explained that¬†I will¬†¬†run out of pills by Monday and asked “what do I do?” She repeated, we cannot do a refill until the 18th unless we receive a rewrite of prescription from your GI. ¬†I calmly said thanks and hung up.

I was mad. It seemed to me that the pharmacist thought my predicament¬†was nothing serious. I guess running out of pills that I’m suppose to take 6 times a day is not a big deal. I know IBD is a disease that people can live with, miserably. But people who need their medications to survive, would they have been told the same thing?¬†I don’t think so.

I followed the pharmacist orders and called my GI’s office with little optimism and told the reception my situation. Of¬†course I was transferred and of course it was a voice-mail! In the voice-mail greeting it stated how it can take up to 72 hours ¬†to submit a new prescription to your pharmacy, since it was Friday I had to accept reality. Thus, for the past few days I have decreased my Apriso intake back to 4 pills a day, by doing so I will have Apriso pills until Wednesday. I’m assuming the change in prescription¬†will not do too much damage, but honestly i don’t know. ¬†¬†I’m mad that my GI did not write a new prescription for the increase¬†in intake, but¬†maybe the increase is temporary. . IDK!!, and that’s the problem, it’s¬†frustrating, it’s¬†making me mad!¬† And since my colonoscopy follow-up appointment is March 2, I might as well wait to finally see my GI and voice my concerns and frustrations lately.

This trial and error period with these medications has been very stressful. And I’ll admit, it’s been hard for me to adjust to this new lifestyle . . I really need to take this as a learning experience and move on. ¬†If i dwell too much, I will become stressed which is the last thing I need to do with my condition. In the meantime, I have to make an appointment with my primary physician and dentist, my overall health is more important than ever right now.

Follow-up with the GI . . . . .

This past Friday I had a follow-up appointment with my GI‚Äôs office, I met with a physician assistant (PA) since my GI was unavailable. The PA was an older woman, and I could tell she was nervous, and inside I slowly rolled my eyes and thought, maybe I should have waited to meet with my GI. Nevertheless, I followed doctor’s orders and visited the office within a week after increasing my Apriso intake as directed. I told the PA that I started feeling better with this change in prescription, but some symptoms remained which raised concerns. After the PA wrote down my symptoms she stepped out to get a opinion from another GI and I heard a familiar voice. When she returned she told me how she bumped into my GI in the hallway all scrubbed up for surgery, and he told her to give me an additional prescription. So until my 3 month colonoscopy follow-up appointment next month, I will be taking ¬†Budesonide 3 times a day. With this prescription, it states to take it in the morning, but I am already taking 5 pills before noon, so it‚Äôs my early afternoon stash. My grand total of daily pills is now, drum roll . . . . . 11 pills every freaking day!!

pillbox

I have now accepted that I have an illness. My pillbox is full and if my GI was to say we have to add another prescription, I have to say NO for my sanity and bank account.¬†¬† To see the amount of pills I take daily is insane! I have purposely split my prescriptions between two pharmacies because I am refilling almost every two weeks and I do not want to be ‚Äúthat girl‚ÄĚ or for them to know me on a first name basis. I know it‚Äôs silly, but I started to noticed a look of pity from one pharmacist whenever I picked up a prescription. . . sighs

The funny thing is that I have been getting so many compliments lately. ‚ÄúOh your skin looks so beautiful‚ÄĚ, ‚Äúyou‚Äôre losing weight!‚ÄĚ, and ‚ÄúYou seem more chipper‚ÄĚ. In regards to my skin looking beautiful¬†I‚Äôm not surprised, because all day I‚Äôm drinking water to take my pills and it‚Äôs the only drink that will not irritate my stomach. Losing weight has not been a choice. There are days when I have an appetite and I eat everything in sight, and other days I am forcing myself to eat. I will admit that I do have more energy and have been sleeping better which is one positive result from¬†this medical treatment.

In regards to my diet, the PA stated I should be more concern with my GERD than Colitis. It is a good point, but through my research I have noticed that an acid reflux diet and colitis diet do coincide. She recommended that I keep a food journal. Which I will do, and I am looking for a food journal app. Any suggestions?

Otherwise, I remain hopeful and taking one day at a time ūüėä