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

Two steps forward . . . . ten steps back

After my brief hiatus I wish I could write about good news, unfortunately the blood is back. It’s been back for weeks and what is a temporary fix? Predisone! ¬†Thankfully due to my personal pharmacy I have an abundance of leftover pills, more money in my pockets for now. ¬†When I noticed the blood wasn’t going away, I sent an email to my GI who I haven’t seen in 3 months. He stated that I start taking 20mg of predisone daily and see his PA again. ¬†. . the plan is to get an appointment first thing in the morning to avoid taking leave without pay since I’m still under a 90-day probation at the new job. It’s only been 3 weeks ¬†. . . goodness!! I can’t make it a freaking month without seeing a doctor!!! In the email to my GI I also mentioned AGAIN how I believe the Apriso is not working since the bleeding has not stopped and he finally agreed! I’m still in shock . . . so back to square one in finding a new long term drug .

I do not remember the¬†last time I was stress-free, this is the¬†most relaxed I’ve been in months. There is no drama at the new job so far . . . and I have the money and energy to go shopping,clean/decorate my room, exercise, and even got a hair cut. It felt like I was¬†starting over, but now I might have to pump the breaks . . ¬†sighs . . . .

I’m not the most religious person, but I would really appreciate any prayers and/or positive vibes coming this way. ¬†I was on such a “high on life” weeks ago to an all-time low at the moment. ¬†Mood swings galore!!

Trying to remain hopeful and can only live one day at a time . . . .

Bye bye Prednisone!

I FINALLY had my follow-up with the GI yesterday . . . oops . . I lied . . I finally had a follow-up with the physician assistant. Of course I did not know I will not be seeing my GI until I arrived, how professional! . . I waited to see the physician assistant and it was as eventful as I anticipated.

Her first question was, “What is going on with your blood sugar? How are you pre-diabetic?” It is very irresponsible of your doctor to say you’re pre-diabetic, looking at your blood sugar in the past 6 months it has been consistent nothing unusual. Does your doctor know you’re on prednisone? If she knew, she would not have said you’re pre-diabetic. Do you have the lab results? . . . . My response was, Hello to you too!

I was taken back that she was somewhat offended that my doctor said I was pre-diabetic, like it bruised her ego. I looked at her and thought, I’m the one that’s mad, I’m the one with the freaking illness!! I said to her, “since we both agree that the prednisone caused my blood sugar to increase significantly in the past month, when am I getting off of it?”  I told her how the past week I decided to start tapering off and lowered my dosage to 20mg/daily from 40mg.  She said since you haven’t had any major symptoms, let’s continue to taper off and  do 10mg for the next 3 days, than 5mg for another 3 days, then stop. I said thank you Jesus, Hallelujah!!   I have been on prednisone since March, and the fewer pills I have to take, the closer to remission!! I can smell it! lol

Also during the visit, I expressed to her my frustrations lately with the staff and the lack of communication from my GI in the past 6 weeks. When I told her how the receptionist told me to call my doctor about joint pains since this was a GI office. She apologized and told me to  be meaner on the phone next time . .  wtf??!?! lol She said it’s the only way they will learn, and they are in the process of training their non-medical staff to improve customer service. I’m assuming I’m not the only one that has complained.

She also told me too much information about my GI. The reason why he has been out of office for the past few weeks is because his father suddenly passed away, and they found his body. OMG . . I felt so sad and it made me realize that doctors have lives and families too.  I felt like a whiny brat for my attitude yesterday . .

As a result of this interesting visit, I have to get blood work done twice. Got it done yesterday and in two weeks, which will be a week off the prednisone. Also, my GI will review the notes that the PA took yesterday to determine what is the next step in my treatment. She stated that I need to make an appointment in 2 months or sooner, I told her I’ll be back in 90 days. Since I’m starting my new job in two weeks, I will only take leave without pay if I absolutely need to. And since it took 6 weeks to “see” my GI yesterday after that appointment was rescheduled twice, I’ll take my time going back to his office.

Remaining hopeful! Taking one day at a time.

When it rains . . . it pours! . . . sighs . .

I received a call from my primary physician’s office today wanting to discuss my lab results. I immediately freaked out since I was just there last Thursday. ¬†They called to tell me that my blood test results show¬†that I am pre-diabetic! Freaking awesome!!! When it rains ¬†. . . it POURS¬†for me lately!. . . . ¬†sighs . . ¬†As I was sitting at my desk at work I slowly started to choke up and cried for a few seconds. Then I remembered I’m still at my desk, so I decided to walk outside to avoid my coworkers seeing me cry. I sat on a bench for a minute and called my doctor’s office to make sure they communicated my blood test results to my GI’s office. My belief is maybe my GI’s office will take my concerns seriously if they heard the blood test results from my doctor and that she agrees that I need to get off the prednisone asap! She believes the long-term steroid use has¬†caused my blood sugars to be high. I’ve been doing this FODMAP diet for 6 weeks now, I don’t see how my diet could be the cause. I expect to hear from my GI’s office by COB tomorrow, if not I will call again. If they are annoyed by me now . . Oh I’m just getting started!! and looking into finding a new GI.

Taking one day at a time . . .

Steroids?!?!? . . . misdiagnosis?!?! . . Huh?!?

I swear “Aunt Flo” visited and stayed for the entire month of¬†February. I was extremely bloated and eating everything in sight, and of course my clothes started to fit tighter. ¬†I just assumed¬†I’m pmsing, and because the weather has been horrid lately, I’m just no longer active. So it makes sense that i might have gained weight. I do not know for sure because¬†I do not own a scale and refuse to buy one! But what made me raise an eyebrow was the day I could not remove my rings. I recall standing over the sink¬†lubricating my finger with lotion and whatever else I could grab to get the rings off my finger. After 20 minutes I was successful. I know having an IBD your weight will always fluctuate, and at times it is difficult to gain weight, but never have my hands swell. It raised a flag . . .

Yesterday as I was preparing like it was a job interview for my appointment with my GI, I logged into my patient portal to review the summary of my diagnosis¬†and list of medications. The one good thing about the Capital Digestive Center is that every patient is provided a log-in into the patient portal where it lists your medical history, summary of your past appointments, scheduled future appointments, and your current medications. While reviewing this information I’m writing my list of symptoms, questions to ask, concerns, etc. and then I decided to Google my medications. My most recent¬†prescription is Budesonide. As I typed Budesonide, ¬†the first thing that pops up is that it’s a steroid. Well got damn!¬†How am I just discovering this . . . why was I not informed?!?!? I mean maybe this is the reason why I’ve gained weight recently, right?

I don’t know how to react because I’m upset that I wasn’t informed, but I will admit ever since I started taking Budesonide I have felt better, and some symptoms have gone away. ¬†I do recall my GI stating I will be taking this medication temporarily, but I still should have been informed. After reading other IBD blogs and forums it seems like many prefer¬†Budesonide over Presdione aka “the devil”, the name many called it. ¬†But what raised another flag was that this drug is usually prescribed for people that have Crohn’s disease . . . so which IBD do I have?!?!? I was told colitis, but since Budesonide has improved my condition maybe I have Crohn’s. . . UGH!! . . sighs . .

This has been the most frustrating 3 months ever! lol I feel sorry for my GI, I have a lot to say when I see him.  . .