Taking a break from my crazy busy life at the moment to spread awareness! Let’s make #ibdvisible
Does anyone find it difficult to be brief when you try to explain your illness? After writing for this blog for two years and all the research I’ve done I still don’t have that “Elevator Speech”. An Elevator Speech can be defined as a clear, brief message or “commercial” about you . When I was first diagnosed and people were asking what is Inflammatory Bowel Disease (IBD)? I think I was a little too detailed. To me, explaining IBD was to discuss the many symptoms I had so the person could picture it lol which is a little much . . . but it was my daily life at the time, I only shared what I knew. Even though now I know much more about IBD, I still don’t believe I am capable of explaining to someone on an elevator, in that short period of time, what is my disease. I came up with the following exercise to create my Elevator Speech :
- What is the goal?
- To spread awareness about IBD and share what it is like to live with the disease.
- What disease?
- In order to be brief, it’s probably best to talk about which of the IBD diseases you have, if you’re diagnosed. After a recent follow-up with my new GI, he believes I have Ulcerative Colitis (UC), . . . I swear it changes every year, but UC is my current diagnosis.
- What type of disease?
- I would say an autoimmune disease of the digestive tract, which still might confusing, so instead; a disease of the digestive tract.
- How it affects your life?
- For those that have had surgery or their colon removed you can say that, it’s very brief and a clear picture of how it affected your life. Since my disease is not as severe, I would say, I have to avoid eating certain foods that could cause severe pain.
- End it on a happy note.
- Since it’s a brief statement you want to leave it in a positive light or a call for action, which is something I always do when I end a blog post. “As always taking one day at time, and remaining hopeful”. Or you can end it with a call for action to find a cure, or want to become an IBD advocate, etc.
After doing this exercise my Elevator Speech is as follows:
I have Ulcerative Colitis which is a disease of the digestive tract that makes it hard for me to eat certain foods because it would cause severe pain. Even though it can be hard to live with this disease, I remain hopeful that one day we will have a cure.
I think it covers all the basics, what do you think? Do you have your own “Elevator Speech” about your illness?
My colon is finally healthy which is a cause for celebration, but I feel like I haven’t had a good workout in over a year. I took a biking class a couple of weeks ago and my entire body was sore for days. I was so sore that I tried to throw something in the trash and it did not make it to the trash can, so I let it to sit on the floor for another day. I was afraid I wouldn’t be able to get back up if I reach down to pick it up. lol I am 30 years old not 60!! I gotta get back in shape. I am claiming a different lifestyle for the remainder of this year, and by writing my plan I am “speaking it into existence!!”
- Like I stated before, I am 30 not 60 and I never want to be that sore again. Before it gets too hot, I plan to start walking for lunch even if means taking a walk in the nearby mall. I cannot sit for 8 hours and unfortunately my work environment doesn’t help. I have a horrible desk chair, no windows, and our office is literally off the highway, it doesn’t encourage me to be active.
- At my new place I plan to start commuting via public transportation, might take longer but its better than sitting in my car. Also, there is a free gym in my building, a trail, and many public places within walkable distance, I look forward to it!
- My first step will be for my new place to be an oasis. Everyday I come home I want to walk into a relaxed environment. To me that means lot of pillows, smells good, plants, and I’m thinking about buying a mini waterfall, like the kind at a spa? lol. I’m pretty sure I can find an affordable one on Amazon :). All that plus some chill music and a glass of wine, I will be good! I’m asking a couple of friends to help me decorate on a budget, and I for sure will have a house-warming, its time to make my home a home.
- Working 8-hour days is a necessity. If work doesn’t get done after 8 hours it is not my concern because I need to go home not feeling so exhausted. Maybe doing this will encourage my boss to hire additional staff or I might get fired, who knows! lol I really don’t care at the moment. If I plan to be here for another 30+ years I have to reduce this stress. At my current rate with my sleepless nights lately, I’m trying very hard to not induce a flare-up. I would like to stay in remission!
- Looking for a church home, I have not always been the most religious person, but I think it’s healthy to be in a positive environment. I think it will be another place to escape to, and help me to look at life in a different, more positive perspective.
- Luckily May will be my busiest month, got so much going on I’m slightly stressed lol My mother and a good friend are both celebrating getting their Master’s, I’m surrounded by smart people 🙂 Another friend is getting married let the festivities begin! I’m moving on May 12th that should be an exciting and exhausting weekend! And taking a much needed mini vacation to Jamaica in early June for a friend’s 30th! I’m going to try to make it to all events but I am 30 no longer a youngin lol
- If my job pays for this coding program, that will greatly enhance my coding skills and will expose me to many different people. I hope I bump into the next Zuckerburg sick of this 9 to 5 lifestyle.
- And I promised my grandmother I’ll get married eventually lol I’m just taking my life in stride and if he appears, I am happy to say that I am now open to being loved. Took a long time for me to get to this point, still a work in progress 😉
I think that covers the basics, I’ll create a timeline another day. And yes, I am slightly a Type A when it comes to time management 🙂
Always remaining hopeful, taking one day a time!
I know . . . it’s been a minute, but for the first time in over two years I can say my tummy has not been the cause of my woes, which is amazing right!! I am in full remission, GI is amazed and I’m in denial. For the first time in years I am on no meds, only thing I’m taking are vitamins, I guess Humira was my saving grace, it worked for me. When my enthused GI was in amazement in how everything looks good including my blood work, I was completely zoned out. It was like I was Charlie Brown, I didn’t understand a word coming out of his mouth. It was just odd . . . I had been through so much physically and mentally over the past two years, I was in disbelief? I just smiled thinking I’ll believe it when I see it. Two months later I am still symptom free and gaining weight which is bittersweet 😉
My health has improved but my lifestyle remains the same, so my body is no longer “stressing” in my tummy but recently my jaw. I had a major flare a couple of weeks ago where the left side of my face was swollen and the pain from my jaw moved down to my neck and eventually my back. I debated going to the ER and glad I didn’t because I felt much better in the morning. Due to this scare, I was prescribed muscle relaxers and strong pain killers to keep handy for another possible flare. Since I have had recent dental work and new crowns (yes plural, hence why I’m broke) and have a history of TMJ symptoms it just seems like a typical day. I told my mother; “it’s how I know I’m alive is when I’m in pain some sort of way”. It’s sad to say but that’s how “I” stress my body, and at 30 years old I still haven’t figured out a way to reduce my stress and handle it differently, but I can only blame myself. I keep doing the same things, same jobs, why would I expect a different outcome?
I’m starting to see the effects of the meds that IBD has put on my body, my teeth are horrid, one of my crowns was to replace a broken filling. My hair is completely dry and I had a bald spot in the middle of my head, but noticed recently that the hair in that area is now starting to grow, thank goodness! I just realized that two years ago at this exact time, I was going to the bathroom 10-15 times a day, had severe stomach pains that no painkillers could relieve, and a week later I was admitted to the hospital . . . Thank god it has been two years and no hospital stay. I have to at least be happy and thankful for that!
I’m starting to make some major lifestyle changes in the next 6 months. First step is i’m moving, found a new place moving in 27 days to be exact! Working on developing a new skill set, took a coding class last week and haven’t been this excited in years in learning something new.
Taking one day at a time, but for the first time in while, I am excited for the future!
It’s been a couple of weeks since I saw my new GI and he was perplexed. He said to me, I do not think a person with Crohn’s disease can have their colon completely healed after a year of treatment with Humira. I don’t think you have Crohn’s . . . . . WEll, WHAT THE HELL IS IT?!?! I silently screamed! He didn’t deserve my anger, he was not the person that diagnosed me and I appreciate him making the effort to discover what is wrong with me. I plan to call his office this week to make sure he has received all my test/lab results from the past two years because I deserve to know what is my diagnosis. He even questioned why I was put on Humira . . . . .woah . . . woah . . . pause . . . prior to Humira I was popping steroids like it was candy in order for bloody stools to stop. I was living with a moon face and could barely sleep, so when I started Humira many of those symptoms disappeared in the first few months and I am forever grateful. But then my GI made a good point, he said “I think you were on Humira for too long, the last thing I want is for you to be over medicated”. This past year was not glamorous, I had three bacterial infections that stopped me in my tracks, not used to getting that sick that often. Then he said, “So what do you think about stopping Humira?” I said, “okay let’s try it”.
I initially hesitated at the thought of stopping Humira, why would I want to stop a drug that made me better? However, Humira can do its own damage, it has many risks and if I do not need to be on it, I will gladly stop. It’s been a month with no Humria injections for the first time in over a year . . and I am doing okay so far. Actually the only medications I’m taking now is, Omeprazole for GERD, birth control and multi-vitamins, crazy right?!? In 2015 there was a point when I was taking 14 pills a day, I am blessed.
I am trying to enjoy this time of true remission and have been a little reckless, had my first beer in 2.5 years this past Superbowl Sunday, it was delicious but regretted it all day Monday, I think I was hungover . . lol I haven’t been eating that healthy which is something I’m working on, been hella stressed because of this job. The last time I was this stressed out was before I was diagnosed with IBD, as a way to cope I was jogging about 6 miles a week . . I am no where near that fitness level now, but this March I will be back in a gym somewhere.
While my GI is figuring out what exactly is going on with me, I’m gonna enjoy this “healthy time” and try not to stress myself back into a flare. Wish me luck!
It’s round 2, I’m backed against the ropes, bruised and exhausted . . . sighs . .
Last Wednesday I felt so much better that I stupidly went to work for a half day, but I felt good! Slept well, throat wasn’t sore, I was happy. When I left work, I went to the grocery store, cooked a pot-roast with potatoes and cleaned my kitchen, by 9pm I was tired. As I sat on the couch watching TV I started itching; immediately thinking it was stress and I thought it would stop soon. An hour later, I’m scratching my chin so intensely that the left side of my face is red. For those of you that don’t know what I look like, I am a dark skin black female so for my face to be red . . . that’s a problem. So since it was now after 10pm and I was itching all over, I called Urgent Care and told them I believe I am having an allergic reaction. They told me to stop taking the Augmentin and take a benadryl if that doesn’t work, come back immediately . After I got off the phone I frantically searched my apartment for allergy meds, but could not find any! Once i realized I was SOL it was 11:15pm, the skin around my eyes and lips were burning, so I went to the nearby Safeway that claims to stay open until midnight, but the doors were locked. I got back in my car and drove around looking for a 24- hour something! About 2 miles away I found a 24-hour CVS, thank god! Popped a benadryl, and was able to finally sleep closer to 1am . . . .obviously I didn’t go to work the next day.
Thursday morning I went back to Urgent Care and they prescribed a new antibiotic something called “Z-packs” for short. But I didn’t trust it . . .. It will be a year next month that I’ve been living in VA and I have yet to find a Primary Care Physician (PCP) , which is kind of a good thing, it shows I haven’t been that sick. My PCP is in Maryland about a 35 min drive away without traffic. After I left Urgent Care I called my PCP and asked if I could see her soon, they said sure and I was able to get an appointment that day at 3pm. I tell my PCP of my life experiences in the past few days and she jokes with me saying, “See! you should have came here first, those people in Urgent Care don’t know what they’re doing!” . . . I laughed and said, “Well you guys were not open on Sunday when I could barely swallow” lol. After joking, she said lets take a look at your throat, that smile immediately disappeared. “Krystal your tonsils are still severely swollen, you have to take that new antibiotic they prescribed with a benadryl just in case you might have an allergic reaction. And I highly suggest you go see the ENT.
Great! . . . freaking wonderful!! . . . .
She took a few swabs of my tonsils and blood work and I’m currently awaiting the results. Due to the horrible traffic since it is the DMV and a day before the presidential inauguration, it took me 2.5 hours to get to my local pharmacy back in Virginia. By the time I arrived, my throat was severely swollen I could barely talk.
Today was the last day of taking the antibiotics and my tonsils are still huge and my throat still feels swollen. I cannot afford any additional health expenses. I’m still paying off the root canal and crown that was barely covered by my dental insurance, a $2100 bill. If tonsil removal surgery is not 100% covered, I’m not doing it. I see my PCP again on Friday and if the swelling does not go down by then and tonsils are still infected . . . I just might cry . . . lol
Life is so crazy! My tummywoes are finally calm and I’m seeing my GI this week to discuss possibly going off Humira. But in the past few months other parts of my body are just falling apart . 2017 has been something else already!! smh
A sore throat is very uncommon to me especially if it last more than a day, I knew there was a problem. It’s the one symptom I have had lately that I could not connect to crohns, but ignored it anyway at first, thinking it was allergies/sinuses.The sore throat started Saturday night and was still there when I woke up on Sunday, but still decided to go on with my day. Met a friend for brunch, ran some errands and realized my throat was still sore and only gotten worst throughout the day. By 6pm on Sunday, I could barely swallow. I quickly did a google search for an urgent care center, and only found one that was open on a Sunday, wtf??
Walking from the parking lot to the check-in desk I was out of a breath, yeah . . . something was wrong . . Young lady at the check-in desk asked if I had problems of breathing and/or chest pains . . I said both. I had reflux issues earlier that day and I was out of breath . . I didn’t lie! but I later understood why it was important to ask. After waiting 45 minutes, I meet with the doctor and the first thing they said was their X-ray technician was gone for the day, but you can come back tomorrow to get an x-ray done. First thought, how is this a 24/7 urgent care center?!? Secondly, it cost me a $50 co-pay just for a visit why would I come back?!? . . . .yes I am very cheap, because I’m broke!
They took my vitals and of course my blood pressure was high . . sighs . . . I hope its just stress related but my last few doctor appointments my blood pressures has been consistently high. I’m worried because hypertension does run in the family. I tell her my symptoms and before examining me she believed it was sinusitis, which I agreed, but then she told me to open wide and her response, “Your tonsils are HUGE!, oh my gosh!, open again! Wow” .. I wanted to laugh but it hurt so bad lol They did a throat swap to test if it was strep, but the results were negative. She determined it was tonsillitis, which is something I had as a kid once, 20 years ago. I was given a prescription for Augmentin and because it was Sunday night, no pharmacies were open, I had to wait until the Monday morning.
When I woke up on Monday it was like I ran into a brick wall. . . body aches, chills, and could barely breathe. When I was finally able to get out of bed went to my pharmacy to fill my prescription, still can’t believe it took an hour, maybe because it was MLK day and they were short-staffed *shrugs*. As soon as it was ready I popped that pill like it was candy and was knocked out 1 hour later. Since then I’ve been home sleeping and drinking gallons of hot tea. I did a half day at work today, regret going but I was starting stress thinking about it since I have no back-up support. It is Day 3 on antibiotics and still have a sore throat, and dealing with crohn’s-like side effects, diarrhea, bloody stools, I had bad flashbacks. I haven’t been this sick in a long time and absolutely hate it! This is the 2nd viral infection I’ve had in the past year, does Humira play a factor?
Remaining positive and hope to be well again very soon!
Happy New Year! Another year and another colonoscopy. . . For a 2nd year in a row no inflammation was found in my colon nor rectum. My colon looked so good my new GI wants to take me off my last medication of Humira. . . Holy Crap lol In a way i’m not really excited, is that weird? It took a good 2 years to adapt to this new lifestyle of being chronically ill. Going from barely taking multi-vitamins to up to 14 pills a day and being admitted to the hospital, deep depression, side effects of steroid use . . . to let’s take you off everything . .wowzer
I guess my fear is relapsing if i’m taken off all medications. I had a little flare-up this year hence the reason why I had another colonoscopy. But to be completely off is kind of scary. I have heard how the disease can go dormant for periods of time, I read one woman had a flare up after 20 years of no symptoms, this disease is something else.
I’m still awaiting the results of my biopsy but I don’t expect anything, think it was taken as a precaution. I need to be grateful and enjoy this moment. I am finally healthy again mentally and physically, starting to look for a new job, new place, recently connected with family members (ancestry DNA test is amazing!), 2017 might be a good year after all . . . we shall see!