It’s been a while since I’ve written . . . its been a while since i’ve done anything for me. My life for the past few weeks has been devoted to sleeping, paying bills, and work. . . such a drag. When I do go out I’m completely exhausted.
I wish I could say, “At least I’m healthy!” . . . . . .but my immune system is no good! In the past 2 months I have had a case of food poisoning, UTI, and recently my 3rd cold of this year. I have never been so sick, so often. So what’s the deal?
I think it’s the Humira. The bleeding has not been present for about 2 months now, but I’m steady getting sick and my hair is thinning out. I’ve lost all my prednisone weight but due to stress I sometimes forget to eat and forget to take my meds. Yes I will admit it! I have been slacking in taking my meds, instead of 4 apriso pills a day i’ve been taking 1-3 pills, because I tend to fall asleep or genuinely forget. It’s odd . . .
Hips and knees starting to hurt, but my skin is beautiful, my body looks great, and I feel like im 50 years old. . . . so crazy!
As always I remain hopeful, taking one day at a time!
I left work yesterday because of stomach pains, good ole cramps. Bleeding has been back and looks like it won’t go away until I start some new meds or go back to my dear friend Prednisone! The bleeding came back shortly after I weaned off the drug . . I think my GI lied to me when he said I was in remission. . . Is it normal for it be so short lived? 1 month after colonoscopy symptoms came back . . . sighs . . Exactly a year ago I was experiencing stomach cramps and other similar symptoms. Those symptoms eventually got worse during the month of March which led to my first ever hospital stay last April. April 2015 will always be a permanent memory in time. I hope I won’t be going back to the hospital anytime soon.
I guess my Crohn’s is definitely moderate-severe, I’m no longer considered a mild case. Been on Humira for the past 5 months has not been my saving grace since it worked 3 out of the 5 months. So what’s the next step? More Humira shots? Or the forbidden word in my vocabulary, Remicade! I’ve heard Remicade has done amazing things and my GI has mentioned it more than once, but I don’t like the idea of sitting in the hospital for 3-4 hours hooked to an IV, sounds like chemo therapy. Will I be in a room with cancer patients? . . gees, how depressing. I’ll find out for sure the next steps when I see my GI in two weeks. The conversation with my GI will probably sound like this, “Krystal why didn’t you inform me as soon as the bleeding started? You should have came to see me.” How’s the job? Are you stressed? You better not be stressed, I’ve told you, you have to reduce your stress”. My responses will probably be, “I’m sorry, you’re right I just don’t want any new meds. Job is crappy and I’m beyond stressed, but I moved closer to reduce the stress of commuting . . can I get points for that?!”
As always, living one day at a time and remaining hopeful.
This was me everyday this past week smh! Fell asleep a few times in my work clothes, but this time around it might be stress related. New co-worker who’s been there for 3 months telling me she’s ready to quit, boss is walking around with watery eyes and I’m like what’s going on? lol Unlike them my stress is noticeable internally which is something I need to be cautious about with this disease sighs . . .
What type of jobs can you have when you have an autoimmune disease? Non-profits is definitely a NO. Very interesting job I currently have but on certain days I feel like my body can’t keep up , feel like an old person. Is severe fatigue a side effect of Humira? I gotta change my lifestyle, maybe start working out again, hopefully that can help with stress and my energy levels.
I really didn’t intend to take a little break after my remission post, but I was exhausted. Instead of napping after my colonoscopy I stayed up and ate myself into oblivion, and was exhausted and constipated for days. Didn’t feel better until New Year’s Eve and of course I wanted to go out, but due to me just recovering from a cold and a colonoscopy, I was starting to think it was not the best idea. And since plans were still undecided it was starting to stress me out; made my stomach hurt lol, I decided not to go out. So my mom invited me to go to church, and I initially hesitated because I am not the most religious person, but why not start the New Year in a positive environment. I went to church on New Year’s Eve and it was one of the best decisions I made. I left feeling better, mentally, and more optimistic about my future . . . I kind of wish I would’ve made an effort to go to church more often last year when I was really depressed, but I spent many Sundays in bed.
I was very excited about the news of remission, it means we found a drug that works!! Since I’m still fairly new to having this disease it was hard for me to grasp that in order to stay in remission I have to continue to take this drug (Humira). . For some reason, I thought remission was “Yay! no drugs” But remission doesn’t mean cured, these meds can’t cure IBD because there is no cure, and once that sunk in; I’ll admit I felt kind of sad.. I have come to accept that I will be on medications for the rest of my life? . It’s kind of scary, and is it safe to be on Humira for a long period of time? Will it continue to work? As usual i like to stress myself out over all the possibilities . . . . I just hate being surprised. . .but I have no control over this disease. Like my friends and family have said in the past few days, “Krystal take this as a positive, and tackle the issues when they come” . . . . This is something I will train myself to do!
Living one day at a time and remaining hopeful! Happy New Year!
I walked into the endoscopy center nervous and exhausted. Only having two hours of sleep, and a meal of chicken broth and jello the day before, I just wanted to get it over with. I was called to the back and the nurse that greeted me gave me a big smile which eased my nerves. After signing some paperwork and changing into a gown I laid in the bed while she was preparing the IV. Out of the blue she said to me”You’re so brave, my daughter who’s 26 is just a big baby” I slightly chuckled and smiled in response. That was very sweet of her to say, but I really just wanted her to insert the IV without it being painful lol . . Of course it was painful lol
Soon after I was taken to the room and small talked with my GI who was in a chipper mood, he looked good lol I quickly passed out. The anesthesiologist did a good job, I woke up fully alert. After drinking my fruit punch juice box I was sitting crossed leg in the bed looking at pictures of my colon while chit-chatting with the nurse waiting for my GI. A completely different vibe than last year’s colonoscopy, I was like a pro and a little too comfortable.
After my colonoscopy my GI stated that if he did not know my medical history he would not have been able to tell by how good my colon looked. He said it looks like I have a normal colon, he was a happy man lol I have never seen him smile so much lol The only things he noticed was Localized erythema with no bleeding in the rectum, cold forceps were performed and non-bleeding internal hemorrhoids. Definitely an improvement.
The exiting news according to my GI is that I have reached remission! I will have to remain on Humira for now, but will start weaning off the other drugs. First one is the infamous Prednisone, which by mid January I will be completely off the drug! I’m more excited getting off Prednisone than remission to be honest lol.
I guess Humira was my saving grace . . . It’s nice to have happy news going into the New Year. I am very grateful.