Life is precious. . .

Last week I went to my great aunt’s funeral. She was terminally ill and bedridden for the last ten years of her life. After surviving a stroke, she could no longer speak and eventually lost her battle with cancer. It was hard for me to visit her because growing up she was such a boisterous woman and to see her so fragile, it saddened my heart. I believe that the last 10-15 years of her life would have been more pleasant if she received proper care/treatment, but insurance is a bitch. After her stroke, once her insurance no longer covered physical therapy she stopped going. When she started chemo for cancer, her body could not handle it, so she stopped treatment.  She was suffering for a long time and like many of my family members, we were sad but relieved that she was no longer in pain.  At the funeral, one of my cousins spoke about the last conversation she had with our aunt before she became terminally ill.  My aunt told her, “if you don’t feel well, get yourself checked out, don’t ignore it.”

Those were some powerful words. You have to take care of yourself. I know having Crohn’s will always be a battle, but my goal is to live the most comfortable life as possible. I am grateful for the insurance I have and even though my GI drives me crazy, I am grateful that I have been seeking some type of treatment. There are different treatments for IBD, and standard drugs (Aminosalicylates & Corticosteroids) is my first choice. Has it worked so far? No, but hopefully biologics will work *fingers crossed* You can only live one day at a time, trying not to stress thinking about the future.

Remaining hopeful.

An IBD experience . .

Every since I started this new job I have been pleasantly surprised by the lack of urgency to go to the restroom. I sat comfortably during back to back meetings for 3 hours sitting far away from the door,  and in one meeting the entire staff was present. I was in awe of how far I have come. But! as always those good days are short-lived when you have IBD.

It was after a team lunch at Lebanese Taverna that my stomach started talking to me.  If my stomach could speak, I’m pretty sure it said “hey old friend, you miss me?” As I gripped my stomach with my left hand and grabbed my poo-pourri with the right, I walked briskly to the restroom. In addition to disliking the 2-stall bathroom layout I also hate that the toilets automatically flush. After I sprayed the poo-pourri I  quickly realized the censor was very sensitive.  As I leaned forward to get paper the toilet flushed, there went the poo-pourri!! When I leaned back the toilet flushed again! Then I heard someone knocking on the door. “Is anyone in here?” said a man’s voice, I yelled, YES! out of frustration and decided to give up. As I walked out the stall the toilet decided to flush a few more times and I just shook my  head. I washed my hands, exited the restroom, and smiled through pain at the janitor who was waiting outside  Before heading back to my desk a coworker said, “free food in the kitchen!” I said “no thanks!” . .  sighs . . .

New Chapter . . .

Today was Day 2 at the new job and its weird because it feels like I’ve been at the job a lot longer.  A friend said, “Wow you must feel really comfortable there” . . I guess I do. I’ve met some pretty cool people so far  and I’m not complaining for once, it’s a good thing.

The bathroom situation is not the greatest. There are multiple restrooms but only two stalls in each , so grateful I have my poop-purri. Luckily my cubicle is very close to the restroom and it’s not very obvious if I go multiple times.

I was very surprised to hear multiple people discussing their special diet. On the first day, one of my team members stated how her sister-in-law has celiac disease, and I chimed in and said how I’m on a gluten-free diet, which I regret . . Of course the next question is, do you have celiac disease? Why are you on a gluten-free diet? . . . ummm. . . I discovered gluten irritates my digestive system. . .  . Idk why I’m comfortable telling the blogosphere about my disease but not my new coworkers. I just feel  like it’s not the right time, but it is comforting that they are understanding of people who have a special diet.  I believe if I have that conversation about my IBD I will have to discuss my hospital stay, and I don’t want to tell my boss I was in the hospital for 5 days 4 months ago . .  .Idk I’ll leave it be, when the right time comes I’ll talk about it.

Choosing my new benefits was a challenge. With this new job my medical benefits come out of my check, of course my first choice was the cheapest insurance. But I had to grow up and tell myself, “Krystal you have a chronic illness, be smart” The most expensive plan is taking more money out of my pockets now, but will save me a lot in the future. Hopefully I’ll be in remission next year, fingers crossed.

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! 

A new year of life . . .

Yesterday was my 29th birthday and even though I said I was not in the mood to celebrate, I kind of did 🙂 It’s hard not to celebrate when your birthday is on a Friday. I spent three hours of my afternoon in a spa and a couple of friends surprised me with tickets to see the Chippendale’s, it was an “interesting” night lol.

This is a very exciting time in my life . I’ve attained my first real job that I believe will be challenging and exciting,  real professional growth.  My health is significantly better than what it was earlier this year. And I have changed for the better as a person. I have the strength, courage, and confidence in myself that I never thought existed. My life has been challenging in the past year and might forever be when it comes to my health, but I’ll be okay. I have to be okay.

As I approach this new year of life, I will try my best not to worry about the future, but instead live in the now. Life is too short.

I recently reached out to all my references thanking them for giving a good reference,which helped me get this job. I received the below kind  message from a former colleague, it’s truly inspirational and wanted to share.

I hope it works out well for you and you can continue to grow and develop your many talents.  You are cable of so much. The sky is not even the limit! Keep reading all you can (serious history, genuine science, worthy novels), attend all the best lectures and expositions possible, and don’t waste your time on silly TV shows, low company, and other empty pastimes.  Life is too short and you have much to contribute.  Be kind and compassionate, and generous to those who need help. Visit the old and sick who are lonely, lend a hand in a soup kitchen once in a while.  And always live your life with high standards.

As always I remain hopeful, taking 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.

My current mood . . . 😤!!!

 As I wait sitting to see  who I thought would be my GI, of course he’s not avaliable, seeing the physician assistant instead.  And I have gained 8 pounds since my last visit, so over these steroids.  It’s not going to be a pleasant doctor visit. 

I look pretty? . . .

I stared at myself in the mirror the other night and said out loud “WOW”. My skin was so clear and the weight lost was noticeable in my face. I said “I look pretty”. Something I feel so wrong for saying not just because it might come off as cocky, but the reasons why I look pretty might be a facade. Starting with my hairstyle. My hair is currently in braids, I decided to get this hairstyle due to the low maintenance, but also I have noticed my hair is starting to fall out. My hair has been thin and damaged for months, stress and these meds definitely play a factor so these long braids make me feel pretty and boost my confidence. Many will deny, but a new hair-do can definitely give you a self-esteem boost.

My skin has cleared significantly. I will give most credit to the FODMAP diet by consuming real food and drinking lots of water, it truly “does the body good”. But, I have been moisturizing my skin like crazy since being discharged from the hospital. After being discharged I swear it felt like I had alligator skin for weeks, my skin was so dry.

My weight. I have lost a good amount  of weight to where my clothes are hanging off of me, but nothing significant where I look sickly. Even though many get excited about losing weight, I do not. My current wardrobe is filled with big clothes and I cannot afford to buy anything new right now. Even if I could afford to buy new clothes it would be a waste of money. I had a mini-flare over the weekend and woke up Sunday morning looking like I was 6 months pregnant. It was the first time my sweat pants fit in months, but by the afternoon they were hanging again.

When people continue to say, “Oh you look amazing, you look great” I’ll take the compliment, no longer going to fight it. I’ll take as many positive vibes as I can get.