Flaring up?

The past two months have been stressful and insanely busy. Most of my time has been devoted to this job where our Executive Director occasionally vents to me about our Board of Directors, and I immediately noticed my stomach starts to hurt. Minutes later I develop a headache.  Ever since I was diagnosed with IBD, I have learned how to better handle my stress, but I now believe people stress me out too.  A friend recently said to me,  “Krystal I didn’t know you had so many issues at your job” They’re right, because I refuse to talk about work outside of work, it was something I noticed that would cause me significant stress. The stress at my job is not drama related (anymore, no longer have to work with the office bully lol) but just a lot of work and a major disconnect with  the Board. It’s been hard to make change and I feel like I’m not working smarter, but working harder. So everyday I go home physically and mentally exhausted.

Severe fatigue has been a problem for me for the past 3 months and it’s getting worse every day. Every week lately I either fall asleep on my couch or wake up in my work clothes in my bed after an attempt to just “lay down” for five minutes. I am frequently up around 3am to brush my teeth and wash my face. In addition to the fatigue a familiar foe has returned, bleeding! Once I noticed it happened more than one time, I immediately contacted my GI and went to the LabCorp this Monday to get blood work done. Frequent bathroom trips are becoming a regular occurrence lately, so I’m worried.

I partly blame myself, haven’t been taking my meds everyday like I should. Do you ever get “meds fatigue”? Some days I have genuinely forgotten to take my meds. I’m tired . . .

As always, I remain hopeful and taking one day at a time . . .

It’s been a while . . .

It’s been a while since I’ve written . . . its been a while since i’ve done anything for me. My life for the past few weeks has been devoted to sleeping, paying bills, and work. . . such a drag. When I do go out I’m completely exhausted.

I wish I could say, “At least I’m healthy!” . . . . . .but my immune system is no good! In the past 2 months I have had a case of food poisoning, UTI, and recently my 3rd cold of this year. I have never been so sick, so often. So what’s the deal?

I think it’s the Humira. The bleeding has not been present for about 2 months now, but I’m steady getting sick and my hair is thinning out.  I’ve lost all my prednisone weight but due to stress I sometimes forget to eat and forget to take my meds. Yes I will admit it! I have been slacking in taking my meds, instead of 4 apriso pills a day i’ve been taking 1-3 pills, because I tend to fall asleep or genuinely forget. It’s odd . . .

Hips and knees starting to hurt, but my skin is beautiful, my body looks great, and I feel like im 50 years old. . . . so crazy!

As always I remain hopeful, taking one day at a time!

 

umm it’s too cold . .

At my current job the air has always been an issue. Since last July I have had to wear a fleece in the office in order to stay warm. But the past few months have been ridiculous. For some odd reason, when it was 40 degrees outside a couple of weeks ago, the AC was on in our office. Why is the AC on in March ?!?!? I remember heading outside and realizing the our office was slightly warmer. As a result everyone in my office has been sick at least once. Even my former boss who thought she had just “allergies” discovered it was actually pneumonia, freaking pneumonia?!?!? which is like death to me. .. of course I freaked out because I wasn’t feeling well. Had an appointment with my GI shortly after I found out and discovered I was walking around with a fever?!?!

A week after all this drama it was still freezing cold in the office. I was wearing  a blouse , sweater, and a scarf and I was still cold, and experiencing my 2nd cold in 6 weeks. At my desk all I could hear was people sneezing and coughing, then I looked at the dirty carpet thinking when was the last time they vacuumed? Ummm this office is dirty . . . hence the reason why we’re all getting sick, ummmm. . . . I can’t get sick, i have an autoimmune disease, I’m taking drugs to lower my immune system. I stood up, tighten the scarf around my neck and walked to the front desk to complain how cold it was and asked for the office supplies catalog, I’m going to order a space heater. .

Surprisingly there were space heaters in the catalog and I thought, “no harm in asking”, when I walked into my boss’ office. Why should I buy one? I can’t use it in my  apartment, it is stated in my lease space heaters are not allowed and the office was not a safe environment for my health. Even if my boss rejected the order, they better fix the air or I would certainly get a doctor’s note.

Talked to my boss about it, he said “sure, I’m freezing too!”. I was like wow thanks buddy! So I ordered the space heater with my supervisor’s approval but it took over a week to get to me?  Come to find out through the grapevine, it was rejected and my boss nor myself was notified. Umm wtf?!? Like I totally get if it was rejected because of a safety hazard but no notification and then it magically appears?!?

By the time my space heater arrived the air was miraculously fixed, haven’t worn a extra sweater in days . . . hmmm . . You’re welcome 😉

 

 

Being Vulnerable . . .

It’s been a while, sorry 😦 but I do miss writing it soothes my soul lol

Just went to a friend’s farewell party and to be honest wasn’t sure I was going to go due to the headache I’ve had all day, but she was leaving to follow her dreams and moving to the big city NYC! So I wanted to be there. It was a very emotional night, a lot of kind words were said about her, then it came time for people to speak. I didn’t want to speak because I’m terrified of public speaking and my voice seems to always crack even when I’m confident. But, all the ladies at my table got up and we have all known each other for a long time, since undergrad, so we all said something. I was the last to speak and right before I didn’t know what to say, until my friend before me said how our friend was there for her in her lowest moments. I started to think of my lowest moment, which was in the hospital last April and how the young lady we were honoring visited me at the hospital. As soon as I opened my mouth my voice started to crack . . . oh god . . .

I started to say how she was always a positive person, even when I wasn’t and was there for me when I was sick and wanted to thank her for that, and started to cry and couldn’t speak. I think for one second I was speaking in tongues, it was so bad I thought. I got a big hug from her and quickly sat down because I was slightly embarrassed, I usually don’t allow myself to cry in public like that, and of course I never want people to see me in that way. . but even though I was embarrassed I was also proud of myself. Not only did I express true gratitude to a friend, but I let complete strangers know about my sickness all at one time. Something I would have never done in the past. I’m growing up. Allowing myself to be vulnerable which is something I would never allow people to see , has always been a fear of mine. I combated two of my biggest fears in one night and I’m okay, I’m fine, not hurt in anyway, other than my ego being slightly bruised 😉

I spoke to my grandmother afterwards, and she was like Krystal you’re human! Another friend mentioned, “I’m sure no one else thought it was out of place , but felt unusual for you.” It felt very unusual . .  Overall a good night,  and a learning experience.

Going to see my GI tomorrow to figure out what’s going on, haven’t been this nervous in a while . .

As always, living one day at a time and remaining hopeful.

 

Deja Vu . . .

I left work yesterday because of stomach pains, good ole cramps.  Bleeding has been back and looks like it won’t go away until I start some new meds or go back to my dear friend Prednisone! The bleeding came back shortly after I weaned off the drug . . I think my GI lied to me when he said I was in remission. . . Is it normal for it be so short lived? 1 month after colonoscopy symptoms came back . . . sighs . . Exactly a year ago I was experiencing stomach cramps and other similar symptoms. Those symptoms eventually got worse during the month of March which led to my first ever hospital stay last April. April 2015 will always be a permanent memory in time.  I hope I won’t be going back to the hospital anytime soon.

I guess my Crohn’s is definitely moderate-severe, I’m no longer considered a mild case. Been on Humira for the past 5 months has not been my saving grace since it worked 3 out of the 5 months. So what’s the next step? More Humira shots? Or the forbidden word in my vocabulary, Remicade! I’ve heard Remicade has done amazing things and my GI has mentioned it more than once,  but I don’t like the idea of sitting in the hospital for 3-4 hours hooked to an IV, sounds like chemo therapy. Will I be in a room with cancer patients? . . gees, how depressing. I’ll find out for sure the next steps when I see my GI in two weeks. The conversation with my GI will probably sound like this, “Krystal why didn’t you inform me as soon as the bleeding started? You should have came to see me.” How’s the job?  Are you stressed? You better not be stressed, I’ve told you, you have to reduce your stress”. My responses will probably be, “I’m sorry, you’re right I just don’t want any new meds. Job is crappy and I’m beyond stressed, but I moved closer to reduce the stress of commuting . .  can I get points for that?!”

As always, living one day at a time and remaining hopeful.

I have missed drinking . . .

This past week has been a true test for my body because I’m totally torturing it  . . . ever since I landed back in DC last Sunday evening and went to work the next day, I have barely rested. Wednesday night I once again fell asleep in my work clothes, but I got a little help from a pink punch martini. And my social drinking continued with happy hour Thursday night, and a housewarming party last night. This is the most social I’ve been in like a year, and for me to be invited, RSVP yes, and actually have the energy to show up, is definitely  improvement.

But when you have active IBD it will always remind you,”I’m still here”. After running errands this morning, I have been in bed since 2pm and  it’s now 10pm. However, maybe my fatigue today might not just be from having IBD, I might actually be hung over lol Either way, my stomach is fine which is happily surprising. Lately when I do drink, I only consume vodka, gin, or dry white wine. I read somewhere that those type of drinks are gut friendly and I have to agree.

I was totally out of my comfort zone last night only knowing one of the hosts at the housewarming party. My anxiety was at a dangerous level at first , I was standing in the corner for a bit playing with their cat. Then my friend asked “What are you drinking?” and listed the many options. Looking around I noticed the  vast amount of wine bottles on their kitchen counter and the stash in their fridge, and swallowed hard thinking this is going to be a “ruff” night. After my 2nd cup of wine those butterflies were gone and I started feeling comfortable and talking to almost everyone at the party. Liquid courage is a beautiful thing 😉  Then peer pressure appeared, my friend the host, wanted to say cheers by taking a shot of vodka. Her friend who grew up in Ukraine happened to bring a bottle of peppered vodka. Of course i said no at first, I already had about 3 cups of wine, but I gave in and thought well it has to be the good stuff, and I’ll admit it was very smooth. After that drink I was pretty much done and hot!! I was like I haven’t been drunk in so long, it was a relaxing feeling. I silently said to myself, “I miss this feeling”.  I was never an alchie, but I have always enjoyed drinking and wine/beer festivals, so when I was diagnosed I was sad knowing that part of my life would have to “end”.

I’ll admit I’ve been feeling better lately, maybe Humira is working for me? I’ll know for sure in a few weeks, have a colonoscopy scheduled right before New Years just like last year, fingers crossed for remission!