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.

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.

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?

 

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!

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!