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!

 

I hate winter . . .

I’m a summer baby and love warm weather, and love it even more as I get older because it never causes hazardous conditions. Ever since I got into my accident I refuse to drive when there is any possibility of icy roads even when it comes to my health. I ran out of my Apriso pills yesterday and had every intention to refill the prescription but oh golly gee, I actually had a date for Valentine’s day, and it lasted longer than I expected, which was a good thing (will discuss in more detail in a later post). But sucked because the pharmacy closes early on Sundays, and its been snowing all day. As a result I have felt more tired in the past day, but i think it’s mostly due to my hectic, stressful lifestyle lately. Conference at my job finally ended and I can’t even relax, why is that?!? . . I’m still trying to figure that out myself. And I’m moving exactly a week from today and haven’t packed, I just have too much going on and no energy. As I continue to lay in my bed, and dreading going to work tomorrow, I’m reflecting on my recent lifestyle choices. I have been mentally and physically exhausted for the past two months, how much longer can I keep this up?

Life is already difficult, adding a chronic illness to it . . . just sucks

 

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!

My #7daysofIBD – Day 2

“I woke up like this!” . . . literally. Anyone else have a crazy alarm system?

IMG_2741

 

I haven’t been sleeping well this week and woke up late yesterday. Decided to go back to my old alarm system when I was experiencing a flare, and yes I still hit the snooze. Goal is to be up by 6:30am. Without these alarms, on a bad day it would take at least an hour for me to get out of bed. . . severe fatigue is no joke.

I know  its supposed to be one photo a day but I had to share my experience at Bed, Bath & Beyond last night. I’m traveling to Texas for the weekend and had to stock up on my poo-pourri. BB&B is the only place I know that sells it and I almost had a panic attack. I could not find any bottles!! My anxiety hit 100 knowing I will be traveling and possibly using many public restrooms this upcoming weekend . . . until I saw something familiar.

They only had 4 bottles?!?! This has to change, but happy I was able to buy one!! #winning #littlevictory

A Flare attack and Black & Blue . . . .

It’s been a week since my last post and not a good one.   A very stressful, exhausting week it has been.  New job has officially started to stress me out, but for the first time in my career its not over drama, just a lot of freaking work. But with my condition any amount of stress is bad, even if  in my mind I categorize it as “good stress”.  As a result of this stress and lack of sleep due to Game of Thrones binge watching (I think I have a problem lol) I had a serious flare attack. I went to the rest room at least 10 times that day at work, and had my first case of diarrhea in 7 months . . . it was horrible. After going to the bathroom 3 times in the span of 15 minutes I became desperate and hoped the little convenient store in our building had Imodium or Pepto. By the grace of God they did and it worked!! Then 2o minutes later I experience spasms of upper right abdominal and rectum pain, could not sit in my chair. . . Found some extra strength Tylenol and the pain went away. All that happened in the span of 8 hours, by time I got home I passed out, my body was exhausted.

Last weekend I took my Humira injection and the next day I noticed this huge black bruise on my upper thigh, right where I had the injection. Is this normal? lol It was a first time for me. No pain or swelling, just a huge black bruise. .It’s starting to fade away but still noticeable . Did I do something wrong? I usually inject in my right thigh but I have so many little dark circles from previous injections I decided to start with a fresh leg . . . I guess that was a mistake.

Unfortunately my stress level has doubled in the past couple of days due to some roommate drama and as a result today I had diarrhea once again. I got so worried it was obvious to my colleagues that I decided to use the restroom in our building lobby a couple times today . . . sighs . . its been rough lately . . I thought my colonoscopy scheduled for next month would be a breeze and Remission!! Now i’m not so sure . . .

Hopefully this holiday weekend I will be able to finally relax.

Empathy vs. Sympathy . . . .

When you tell someone you have a chronic illness what is the typical response? “Aww I’m soo sorry, but you don’t look sick?” “You look good and at least you’re skinny” have been common responses for me.  I always felt  the need to change the subject as soon as a person say , “but  you look really good”. I always took that response as “Why are you complaining?” . . . . Maybe I’m being oversensitive, but its hard to connect with people that do not live with your illness.  So the response of “well you look really good” is their way of being sympathetic because they can’t relate. Unlike a response of , “Wow I can’t imagine the pain you go through but thank you for sharing  and if you ever need anything . . . . ”

I found the below video which I think perfectly illustrates the difference between empathy and sympathy, do you agree?

Enema? no please! . . :(

I have a scheduled Flex Sigmoidoscopy next month and the prep instructions stated to complete an enema 1-2 hours prior.  How’s that gonna happen? The first time I ever had an enema was in the hospital and to be honest that is the only place I imagine where you get an enema professionally done in  a sterile environment. But you can buy a freaking enema kit from Rite Aid?!?! and I read you can do it yourself!?!? That sounds all fine and dandy for others but not for me . . . even if I am capable of doing it myself, I really don’t want to. . . I REALLY don’t want to . .  . I don’t want to do it at all.

I sent a message to my GI’s office asking if I could drink the nasty prep stuff the night before since my procedure is scheduled for 7:15am the next day. .  My GI’s response, he thinks it’s best that I get an enema done the morning of, since my colon needs to be cleansed close in time to the procedure. I haven’t responded yet because I need advice . . What would you do in my situation?  I’m about to cancel the procedure all together and go for the standard colonoscopy.  Getting that enema was a traumatic experience for me in the hospital, it was humiliating and painful at the same time. I don’t wanna get it done!  sighs . . . I don’t want to get used to this . .  . .

It’s nothing cute about being shy . . .

I’m mad at myself . . . all those years when I was too insecure, shy, timid, to try new things all because I was worried how I would look to others,  was such a waste of my time and unnecessary stress. The past two years of my life I felt like I had finally grew up. Learning to love myself and not care about what people think. All those times I was sitting at home with my feelings hurt crying over people who didn’t give a damn about me. Being sad and alone thinking about them and I’m 100% sure they were not doing the same thinking about me. I’m sick of being nice. I’ve learned just because you’re nice to others don’t expect to receive the same treatment. In this society people are only looking out for themselves, so it’s time that I care only about me. I’m gonna be selfish while I’m young and single. I’m going to try new hobbies and not wait around for someone to join me. Going solo, purposely putting myself in possibly socially awkward situations. Combating my anxiety head on!

Which makes me think of this new job. The new job is great, I actually like my job but have noticed the cliques and how HR and IT are lazy. So lazy that in a recent “updated” job listing sent to the entire staff, my job title was incorrect. Luckily my boss noticed before I did and requested a correction, but I noticed another error is this listing in regards to my information. In the past, I would just briefly mentioned it needs to be changed and hope they will do it. Naa . . not anymore, in a heartbeat people will jump on me if I do my job incorrectly, so I’ll do the same. Not only will I notify you of your mistake but will Cc our superiors. I’ve noticed the more outspoken and direct you are, shit gets done. People might not like you, but they will respect you. No longer interested in being well-liked, i’m there to do a job and go home and live my life. Sick of my jobs “being” my life.

All those years when I was healthy and had the energy to do many things, I didn’t! All because of the fear of being judge. Such a  waste of time and energy. .  .so now I have this major setback called IBD, and at the moment, crohn’s disease.  Where the thoughts of going to a public event for hours, standing in long lines, traveling and long road trips, are currently high on my list of fears. But this fear is temporary, I will get over it one day and okay with going at it solo.

Remaining hopeful, taking one day at a time. . .