Writer’s Block . . . :(

writers-block

Writer’s block is no joke! I’ve noticed how lazy I have become. I used to come home and write for hours, now I just lay on the couch watching TV, I can no longer stand it! I was recently inspired to write again after a conversation with my mother, stating how I haven’t been feeling well mentally and physically and  the last time I felt this way was when I started this blog.  So I’m getting back to TummyWoes because it is therapeutic and something I truly enjoy. And since there is a never a dull moment in my life, I have a LOT to write about.  . .  Hopefully writing this post will get me out of my funk . . .

To my fellow bloggers, how do you prevent a writer’s block?

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 😉

 

 

Chronically ill mothers . .

I’m not a mom, but hope to become a mother one day. However, I started thinking how hard it can be to have children and be chronically ill.  I barely have the energy to get through the day and it’s just me. I can’t image working an 8-hour day and coming home to a family. How do you have the energy? How do you get by not only paying for your medical bills, but taking care of your family too? I can’t imagine doing that right now in my life, but mothers do it every day, even those who are chronically ill.  I found this article To the Mom Living With Chronic Illness Who Feels Inadequate It gave me  great insight of being a mom that’s chronically ill and thought I should share with you guys. My favorite passage of the article  . .

“Most importantly your children don’t know you are sick. Not really. Sure, you tell them. I did. To explain why mommy can’t take them to the park today or why mommy is on the couch again. They may even complain about your illness getting in the way of things they want to do. Children are great at playing the guilt card. But they don’t really see you as sick. They see you as MOMMY. MOMMY who may be sick sometimes, but MOMMY. And that makes you the most important person in the world to them and they love you for it. No matter what. So although you may think they see you as sick mommy, when they see you, all they see is L-O-V-E.” –  Sharilynn Battaglia

Kudos to: Rebecca Zamolo :)

I’ll admit my biggest fear with this disease is  the possibility of living with an ostomy bag.  Just the thought of a bag being “attached” to me gives me chills. I hope that day will never come. When I found the below video on YouTube of an ambitious young woman who had to make the decision to have her entire colon removed, it touched my heart. After watching the video I cried, not because her life seemed to be difficult with an ostomy bag, but because she persevered. The video is very inspirational and I plan to download the entire film, I hope you do the same.

Kudos to Rebecca Zamolo for spreading IBD awareness! 

Beyond tired . . .

So . . working 11-hour days two days straight, is probably not a smart thing to do when you have IBD.  I am beyond tired . . . I think I started speaking in tongues by the end of the day, could not form a sentence to save my life. But I am taking a short vacay and will be out of office for a week! woo hoo!

I will be traveling for the first time since my diagnosis. This will be my first trip in 2015 and I am more anxious than ever. Traveling on a plane, how to pack my medications and the fear of security pulling me to the side, has been on my mind for the past few days. Also, since I’m doing the FODMAP diet, it’s going to be difficult not to cheat . . . sighs . . so many things on my  mind, too many things on my mind!! I have the weekend to figure this out and hopefully calm my nerves. Any tips would be greatly appreciated!

Now I’m wired, I do not imagine falling asleep anytime soon 😦

Remaining hopeful and taking one day at a time 🙂

CCFA Take Steps Baltimore . . . :)

I think I have finally calmed down after my prednisone rage, and hope to finally get some sleep tonight. I’ve been wired and walking around mad for the past 3 days, scary stuff lol  Anyway on to something positive.

This weekend I’m visiting my mother who lives in the suburbs of Baltimore to discuss our upcoming trip to California. Yes,  we both decided we needed a little break from our lives and will be heading west for a much needed short vacay.  A vacation . . . . something I thought I would not be able to do this year, I’m glad I’m taking a break. While discussing our trip details, she mentioned how her church will be participating in the CCFA Take Steps walk in Baltimore on June 6, and how she registered and planned to walk. I asked why didn’t you tell me about it? She stated “You’ve been sick lately and I wasn’t sure you would have the energy to walk, I decided to walk with my church in your honor”.   Awww .  . .  *tear, tear*  I said thank you and that’s very sweet of you, but I would love to join you and the church, so I am now registered! My mother told me how the Bishop’s son was diagnosed with Crohn’s disease many years ago and he has been an advocate for Crohn’s & Colitis research since. I no longer live in the Baltimore area, but I might consider joining this church. I have never been a religious person, but lately I need all the positive vibes I can get.

My mother is a strong woman, I can count the times I have seen her cry on one hand. Me being her only child, I have wondered how my illness has affected her because she doesn’t show it. Maybe she’s being strong for the both of us, I guess that’s what Mothers do.  🙂

Check out the event! http://online.ccfa.org/site/PageServer?pagename=TS_homepage

Chaos at the GI’s office . . . . part 2!

After my GI’s annoying behavior it was just me and the PA  again. She goes over all my medications and told me how for certain prescriptions I am only supposed to take as needed. I cocked my head to the side and asked,  “why wasn’t that stated in the prescription instructions?” Her response was, “its only supposed to be taken as needed” I said “okay!” since I could sense some tension.  But I did ask about my the GI’s request to see me weekly and she stated, “Only come as needed” I said “Oh really?” with much sarcasm. .  . . I was soo over it, and ready to go.

Since they were still waiting on my blood work for the hepatitis test, the PA brought up that I need to also be tested for TB . Unfortunately, discussing when to get the PPD placement turned into another battle. When you get tested for TB  you have to come back within 48-72 hours and I am already taking leave on Friday to see my nutritionist, so I suggested next week would be better. She asked why can’t you come in Friday, I stated I’m already taking a half day and my nutritionist is not in this area. Her response was, “Well you need to find a nutritionist that’s closer!” I quickly stated how my primary physician recommend her, but then I stopped myself. Why was I explaining myself to this woman? It is really none of her business. So I thought, how can we resolve this since she’s persistent on me getting this TB test done this week? I looked at her and said, I can come Friday if it’s before work. She suggested 7:30 am, I said SURE!. She jokingly said,  “make sure you’re here on time, because 7:30 is a much earlier start time for Ms. Marie”.  I wanted to say I don’t give a damn to be honest, it’s her job and I’ll be on my way to mine. . .  But I did not say that,  instead I said no worries!  with a big smile :), because I was finally leaving!! And of course I have to come back next week to discuss the results of the blood work and TB test. Once they receive those results, the new discussion will be whether I’ll be starting anti-TNF vs Immunemodulator agents. Or trying systemic steroid treatments.

After next week they will need to find me to make an appointment because if this happens again, I’ll start looking elsewhere. Capital Digestive Care needs to get their shit together. Strike 1!

This has been the most annoying week and being on prednisone doesn’t help. I am highly irritable and pmsing. I apologize in advance to anyone that crosses my path for the next two days lol Thank goodness for the long holiday weekend, it is much needed!