It’s been a long time . .

It’s been almost a year since I’ve posted and it was hard to understand why until recently. .  . I’ve been dealing with the big “D” in 2018, depression. It’s sad because I started the year on such a high note, I believed. The last time I wrote I left a job and living situation that made me often broke and stressed. I decided to leave without a future job prospect and let life take the wheel, i was too tired and exhausted to care anymore.  The last job interview I had before moving back to my moms was in Washington DC. I didn’t think I would get the job so I continued my move back to Baltimore an hour and a half from my former location.

By a struck of luck I got the job and was excited for this new chapter in life, that wonderful feeling only lasted for two weeks. First time in my life I regretted taking a job. In addition to my commute and the demands of this job where I worked late for the first time two weeks in, I cried. I had extreme feelings of regret. Unrealistic deadlines, unexpected meetings scheduled for Saturday, bosses throwing me under the bus three months into the job, wtf ?!? I felt like I was deceived or not the right person for the job. But i quickly realized everyone around me was miserable and many other newcomers had the same feeling, what a shame. The work itself is interesting but I’ve realized that its not enough. My anxiety got so bad I could no longer sleep so I went to my doctor and asked for help. She suggested I seek therapy, a new job, and prescribed me an anti-depressant, Lexapro. Lexapro has helped, but seeking therapy and a new job is a work in progress. For me to move from one toxic environment to another I just became num and stayed in the house and slept for most of this year.

I expressed my concerns with my current employer, first time i have ever done so, and basically going into my bosses office stating how I’m going to quit and how I need help, and the little help they provided aka my other new staff member was weird. It was up to us to figure this out, so we’re learning by making continuous mistakes, seems the way of how things are done.  I had to plan to work this holiday weekend but fuck it, i’ll deal with it tomorrow. The Lexapro helps to num anxiety where it no longer causes stomach pain and a potential flare-up, but it’s just a band aid for my current situation. As I wrote this, i checked my work email three times, thinking I’ll miss something being this paranoid is not healthy .

Me writing again I hope is a step in the right direction. 2018 has not been fun. 

Happy New Year! . . . Ugh . . . :(

So . . . it’s less than an hour until the New Year and everyone on social media are posting New Year resolutions and all these positive messages “out with the old, in with the new!” etc. But let’s be real, its not like next week is going to be amazing and wonderful just because it’s a new year. Since I was diagnosed I told myself to let go, because me having this disease was completely out of my control. I finally learned you cannot control your life, just gotta ride the waves. I’ve been riding waves somewhat smoothly until this year, so many things have happened out of my control, such bad luck lately, I’m just speechless

2017 overall was a “healthy” year because I was not admitted to the hospital. After I was discharged in 2015 I told myself every year is great as long as I am not in a hospital. Well its hard for me to continue to abide by that saying, because 2017 was shitty. It started off being scammed by a crappy dentist office and paying TOO MUCH money in dental work, its nothing like being taken advantage of when you’re in pain. Then my job which has been a pain in my side for years now, I’ve been trying to get out of there before it got worst. Well it got worst a few weeks ago, my boss was fired and somehow I’m cleaning up his mess plus my job until his replacement is hired. How is that fair? Why is this not being reflected in my income?  I moved to my apartment about 9 months ago, my lease is up for renewal in April and I’m hearing through the grapevine that peoples’ rent is being increased to $200 a month. WTF?!?! Yes, I understand renovations occurred 3 months after I moved in that I had no knowledge of before I signed the lease, but how is such a rent increase even legal? Oh yes! VA is not rent-controlled, so they can charge whatever they want!

The one good thing about my current job is that the office is closed from Xmas until New Year’s, but I guess you’re still expected to work because when I did check my email this past week I noticed I received emails daily from our Interim Director . .  . I read but did not respond . . was on Holiday Break *shrugs*  . . . I spent the week at my moms sleeping, watching tv, and eating, best week ever. I returned to my apartment today to see two unexpected tax bills. One from a county I haven’t lived in since May and a letter from the IRS because HR Block fucked up . . . so tomorrow being January 1st will not put a smile on this face. . .

I am sorry to anyone I have wronged, please remove this hex, cause this bad luck is making me very depressed. Hmm that kind of rhymes  . . lol

The first 3 months of 2018 will be the most stressful, and I have never been so grateful to be back on Humira because if not I might be admitted to the hospital. I know some might read this and say “stay positive” but  right now I am living in the present. The present me is broke, stressed, and getting fat from all this stress eating lately. Im sleeping in tonight and plan to be at the gym in the AM. I hope my car will not have a flat tire since one of my tire’s air pressure looked low today due to freezing temps. I’ll put air in it tomorrow hopefully that works for the time being,  but I have a feeling I will have to purchase new tires soon with the non-existent money I have . . . . . sighs

For those of you living high on life, please send some of those good vibes my way . . . it is greatly needed.

Happy New Year . .

IBD is annoying . . . .

I have missed doing the things i love, like writing for this blog . . . Past few months have been annoying! I refuse to say hard because overall i’m living a good life and is now grateful i’m healthy again . . “now” is the keyword.

Last time I chatted with you I was going in for a colonoscopy because the bleeding, stomach pains, and frequent trips to the bathroom came back with revenge. The results of the colonoscopy showed I had proctitis which is an inflammation of the lining of the rectum. So I was immediately prescribed Canasa which didn’t work at all. I got so sick i took 3 days off of work and was on a gatorade, chicken broth diet. After another visit to my GI’s office they put me on Cortifoam as a temporary solution until  . . .  .dun dun dun!! . . they put me back on Humira! Sighs .  . . as I sit slumped in a corner feeling defeated. 😦

Humira has been my saving grace in the past and I hope it works again this time around but reality is beginning to set for me . . . will I have to be dependent on medications for the rest of life with this disease ?!? Almost three years in and it’s still hard for me to accept, I just cannot grasp that this will be lifelong . . . wow . . . it’s such a defeating feeling. Prior to getting sick I took the initiative to be more healthy. I signed up for a gym membership, got a personal trainer so I can exercise safely this time around, then I got really sick. When I was diagnosed in 2014 it was too after I was physically active, I was diagnosed 4 months after doing my first Mud Run obstacle course, I was in the best shape of life. Could this be a trigger? Can’t be right? Another topic for another day.

I have officially started Humira, completed the horrible 4 injections starter pack  2 weeks ago and starting to wean off the cortifoam which was my 2nd saving grace. I’ll take cortifoam any day over prednisone. I’m back at the gym, PT sessions are over and I have now become a gym rat, at the gym like 4 days a week, cray cray! But I’m proud of myself! I overcame a flare to going back to doing something I enjoy. Now just need to get rid of this job (which is the main reason why I’m in the gym 4 days a week, another post for another day).

As always, I remain hopeful and taking one day at a time.

Well it was nice while it lasted . . . :(

Eh . . . Remission was fun while it lasted, or maybe I’m jumping the gun! I’ll know for sure on Tuesday, have an endoscopy and colonoscopy scheduled . . .  sighs

Bleeding and having bloody stools has been consistent for the past month so I finally forced myself to go see my GI, I really hope it’s just hemorrhoids but after falling asleep on my couch for the 3rd night in a row. . . . yeah it’s something.  When I saw my GI he was quick to suggest I get back on Prednisone and I just wasn’t having it by my childish response “Do I have to!!”  He suggested we look inside before he puts me back on meds. I’m really trying to lose weight because it’s just been out of control lately and going back on steroids will not help. I’m at my heaviest weight ever and to many that know me I still look skinny, but for me It’s not about being skinny, it’s about being healthy and if I can’t fit my clothes lol   I’ve always said when I can’t fit my clothes is when I’ll start to care about my weight, well I can’t fit my clothes now and too broke to go shopping. I’ve been so sick, stressed, and busy this year my body is like nope! I think it’s time to make lifestyle changes and make big moves because my life has been the same for the past couple of years and I’m not getting any healthier.

I’ve see many others in my life get married, have kids, new relationships and friendships and my life has been stagnant. The only continuous surprise is my illness, never know when it wants to come back and ruin all my plans like usual . . . . but that’s because I allow it, my goal is to avoid doing that this time. Outside of my IBD I’m still working on me. Been at my new apartment for almost 4 months now and I love it! Still at the same job, hopefully for not too much longer. I just feel like our director just ruined a good thing, before he started we had a well oiled machine he decided to throw a wrench at it and leave it broken . . . and I’m literally sick of putting out fires. I think the stress is the reason why I started to flare up, non-profit jobs are fun on the surface but just soooo unorganized and stressful. Just joined a gym and signed up for a personal trainer . . . I’m very stubborn so I feel sorry for him lol but it’s something different and hopefully he holds me accountable. I’ve created a meetup for fellow health bloggers in my area, we’re 3 strong at the moment but the goal is to network with people with a similar passion and see what happens, and in a weird way it will be cool to be surrounded by fellow chronic illness folks *shrugs* .  I’ve tried support groups and always left feeling worst, going to try something different this time around. Lastly, gonna try to get a PMP certification, I hate taking any forms of a test with a passion but If I can pass this, I think it will be a life changer. Since I’m single with no kids I’m trying to spoil myself as much as I can with all this “Me” time .

As always remaining hopeful and taking one day at time.

A wonderful visit :)

I’ve been feeling kind of down lately and my current flare up proves it. Stress is definitely a trigger for me and I almost had an accident a couple of days ago to prove it. Not really appealing at 31 years old but I digress lol

Whenever I’m down I’m not the most happy person to be around and I start to feel like I’m living in a fog and just frustrated with the world. Not really a pleasant feeling. I had a dream last night that featured my favorite uncle that passed away about 15 years ago. Wow . . didn’t realize it’s been so long. Growing up as an only child and raised by my single mother he was that one consistent positive, fun, male figure in my life until I was 16 when he passed. Since his death whenever I have a dream and he’s in it, I feel like it’s his way of saying hi. It might be silly to think so, but since it happens so rarely I almost vividly remember every dream I’ve seen him. I’m not the most religious person but I do believe in life after death and that we do have our own guardian angels. I have had an experience where I was crossing the street and I thought my friend was pushing me across, to look back and see my friend still on the other side of the street and the truck that almost hit me stopped. I was literally pushed and remember feeling fingers on my back, that more than anything convinced me that spirits exist.

So last night I had a dream and my uncle appeared, in past dreams I’ve never had a conversation with him, he was just talking to other family members, it was like a scene out of my life. For the first time in a dream I walked up to him and said “Hi, I miss you and if this is your way of saying hi, I thank you so much for doing this.” He just smiled and then I woke up. I cried for a good 10 minutes, it just seemed so real and I didn’t realize how much I’ve missed my uncle. 15 years later, I’ve realized losing a loved one is something you’ll never get over, but just learn how to live without them.

Even though I’ve been feeling down, I’m grateful to wake up and see another day. There are many days where life is so hard, especially when having good health is not always guaranteed, but life is also so very precious and its nice to know that I’m not always alone.

As always taking one day at a time and remaining hopeful.

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!

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?

 

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!

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!

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