autoimmune disease, hopeful, IBD, stress

Busy Bee . . . Glad I have the energy!

The past six weeks have been insanely busy and I never want to experience it again lol. Since the first week of May I haven’t had a free weekend since April. From a friend’s bachelorette and wedding, mom’s graduation, moving, and mini vacay to Jamaica I’m officially spent physically and my bank account is dry.  But I’m not complaining, I can go on a ramen diet, I’m excited that I can eat ramen again lol. It’s crazy to think two years ago I would’ve declined majority of those events due to my poor health. So I have been grateful to be invited and healthy enough to go to each event. I am afraid to miss out. I feel like for almost two years I was at such a low health wise and mentally that I checked out of my life, I was in a fog . . This year is the first with no meds and complete remission, so I’m trying to do everything before this good health goes away *knock on wood*.

Even though IBD-wise I have had a clean slate this year, I’ve been sick in many other ways. For example my two spells with Tonsillitis this year, last time I had it was 20 years ago. I saw an ENT doctor and he stated if it happens five more times this year, then I’ll suggest you get your tonsils removed . .. WTH?!?  In addition to my tonsils my teeth have been horrendous, still paying off dental work from last year, getting two crowns and a root canal is no joke. Thinking about getting a 2nd job to pay off debt, but I’m scared the stress and physicalitly of working two jobs would be too much for my body. I’ve had this random craving for ginger ale, would drink it everyday if I could. . . last time I had such cravings it was to help with my stomach and shortly after I was admitted to the hospital. I hope this is not an early sign of a flare up, fingers crossed.

Remaining hopeful and taking one day at a time!

anxiety, autoimmune disease, chronic illness, colitis, Crohn's disease, IBD, IBS

Explain your disease in 30 seconds!

UC blog

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?

 

#remission, anxiety, autoimmune disease, IBD, stress

Time to get fully healthy!

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!!”

Physical Health

  • 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!

Reducing Stress

  • 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.

Social Life

  • 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!

#remission, colitis, IBD

Sigh of relief . . .

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!

anxiety, autoimmune disease, Crohn's disease, IBD, illness

Med Free? . . .

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!

anxiety, autoimmune disease, IBD, illness

Tonsils Takedown Round 2!

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