My nine day hospital stay

After reading everyones blogs and listening to people in my CCFA support group about there hospital stay, I thought I was pretty lucky to have never been admitted into the hospital. My day finally came and I am happy to say I am back home.

I was experiencing shortness of breath one day and just tried to push through it, since I had a 12 1/2 hour overnight shift at work that I had to get through. I hardly made it through my shift and took myself to the doctor. From there, they sent me to the ER since my oxygen level was so low and my heart rate was over 176.. I had no other symptoms of anything else besides the fact that I could not breath when I got up.

I was admitted into the hospital and had millions of tests done on me, since no one understood why I had no other symptoms of anything else. They started to treat me for pneumonia, as my XRAY showed a lot of inflammation in my lungs. I was getting no better and my heart rate was just through the rough. After getting over 10 doctors involved in my case, one doctor finally had a brain and put me on strong heart pills to slow my heart rate down. 

Sadly, I had to miss my Humira shot this past week so now I am really nervous that I am going to flare up. My GI doctor even came to see me and to try to figure out what was going on. She happend to come in right when my fiancé brought our dog, Yogi in for a surprise visit. 

To make a very long story short.. They discharged me leaving it as a really bad pneumonia. I may have pneumonia, but I truly blame my autoimmune disease for this. Though I could get it healthy or not, but since I can not fight infections I get that much sicker. Also, being on Humira I really cant fight infections. 

During my stay, I had to walk with a walker, gait belt, oxygen, IV, a nurse, and a CNA. The staff was beyond incredible and I made some friends. I did however get a little cranky at them when they would not let me toliet on my own. I explained to them that I had IBD and wished to do this alone. They wouldnt budge, in fear that I would pass out from my heart rate being so high. Do you have any idea how hard it is to go to the bathroom with someone standing right there? What a nightmare that was.

Sitting at the hospital for nine days really made me think. I thought I held it all together well. Inside, I am sure of it that I will be back in the hospital again in my future. Having an autoimmune disease means your body can not fight against infections like everyone else can. Every little thing now can effect my Ulcerative Colitis. I now have to wait for my injection and take more pills on top of my regular. 

I am now just taking it easy and I am eager to get back to work on Saturday. Hopefully I can get back on track and I am crossing my fingers that my stomach will take one for the team until my next Humira injection! 

The term “sick”

What does being sick mean to you? I have pondered the thought so many times, but today really made me ask myself what being sick really means for me.

I was so close to remission and I am still hopeful that I could be. However, as I was tapering off my steroids I got sick again. I was hoping and hoping it was going to go away, but it stayed. That feeling came back of never feeling better. I said to myself “this is what being sick means”. My disease has no cure so this is why it is so hard to feel better. This disease is supposed to be treatable, but I cant even get there. How I just want to feel better and move on with my life.

Being sick means you never know how you are going to feel. You never know when all of it is going to blow up and you have to contact your doctor. Being sick can cause you to loose hope in everything.

My doctor moved me back up to 20mg of the prednisone and suggested that if I dont get better I have more testing to do. It is hard not to get discouraged and depressed when your body is fighting against you. Being sick is never knowing what is going to happen to you or never knowing when you are going to get better.

When healthy people get sick, they can ushally see the doctor once and get antibiotics prescribed to them. When people that have a chronic illness get sick, you don’t know how to treat it and if your body will even take it. Or, the fear that it can lead to something else.

What does being sick mean to you? What do you do when your body is fighting against itself? How do you stay positive when your body lets you down? 

Dear Humira

Dear Humira,

As am about to inject this horribly painful shot, I am thinking how I may owe you my life. I am dreading injecting this medicine into my skin. It is by far the worst shot I have ever had.  However, because of you I have been successfully tapering off my steroids. I have been on 10mg for three days now and that is the farthest I have ever gotten. 

Though you are painful and I have to babysit you in the fridge to make sure you are still usable, it could all be worth it. I am trying not to jinx myself, but I have never come so close to remission before. The thought excites me and makes me hopeful to have my life back again. Or I should really say “my new life”. Of course I am still scared this may all blow up in my face and I could get sick again. Lets be honest, I have to count my bowel movements I have a day and PRAY there is no blood. 

The fear of all of this not working terrifies me. If it does work for me I would be eternally greatful. I would even be a spokesperson for Humira if I was ever asked! So as I dread to take this shot, it is well worth it to be able to function again. 

Have you tried Humira or any other self injection? How do you get through injection?

Traveling outside the country with IBD

I am happy to say I am home from my vacation! I traveled to three different countries on a cruise ship. If you read my blog where I first mentioned going on this trip, then you will know how scared I was to go.

I was a nervous wreck for this trip for many reasons. I was just beginning my tapering off of the prednisone and I didn’t know how my body would react to traveling. I had never been on a cruise before and get motion sickness. Plus, I am still trying to get a hold on to this glorious disease.  

I can safely say I did wonderful on this cruise. I did not get sick from the tapering of the steroids and I was able to enjoy myself. I did have a lot of anxiety just being terrified that my symptoms would return. I think that will always be there though. However, knowing your so far away from home in the middle of the ocean is very nerve racking! I stuck to the foods that work for me and I was very cautious in areas where people spread germs. I even noticed my moon face fading away! I am so hopeful that Humira is working for me and if it is, that means I can have my life back. I am now on the next deduction of prednisone, which is 10mg! I could almost be in remisson and I would do anything to be there. 

I even got engaged on this trip! My fiancé Pete and I have been together for almost four years and lived together for over two years now. I really am lucky and I am so excited I can call him my fiancé and soon someday my husband.

I had a wonderful vacation, but I don’t think I would go on a cruise again. The motion of the boat and just knowing you are so far away from home in the middle of the ocean, is pretty terrifying. Traveling with IBD is very scary and you really have to watch yourself. Not just watch yourself, but watch others. There is always going to be that disgusting pig who doesn’t wash there hands after using the bathroom. Or, the person who picks food up with there hands at a buffet.  

IBD people must know how the bathrooms look on a cruise in your room.