The past few weeks have been quite eventful. For those of you that know and have been able to follow what's been going on, I spent some time in the hospital recently, receiving treatment for a Crohn's flare that for some time, I thought was a virus. I was treated with steroids for months for a bitch of a flare that I had encountered last Summer [due to a drug called Mobic], and upon tapering around Christmas time, I relapsed. Hard. I just didn't know it.
I went to the E.D. about 3 weeks ago for what I thought was a contagious stomach virus that had been going around Boston. I was severely dehydrated, which caused the Emergency team to focus on my rapid heart rate. I have a history with blood clots, so they were spot on in researching the cause of my heart fluttering, but they had neglected to address my actual symptoms. After giving my IV fluids to combat dehydration, I was sent home. The problem was, I had been vomiting and having diarrhea since around the start of the new year. I lost a lot of weight, and really just needed to figure out why I could keep nothing down- or in.
I had gotten so weak in the following weeks that I started experiencing dizzy spells, and Steven and I decided that it was time to visit the Emergency Department again, this time to figure out WHY I hadn't been able to shake these awful symptoms.
I was admitted, and imaging was done to figure out what was going on. An abdominal x-ray was given, I was given more fluids- with difficulty finding veins that would take an IV- MY WORST NIGHTMARE, and electrolytes to help with what had been depleted during my regular barf sessions. A chest x-ray followed, to rule out any other strange infections, and I was also given an MRI with contrast to get a closer look into my belly. What we had found astounded me. I had been going through this virus-like sickness for over two months, and had NO idea that it was in fact, a full on Crohn's attack. I had no blood in my stool, and experienced NO regular Crohn's pain. Just your typical, 'I need to go to the bathroom' pressure. It came as quite a surprise when my GI Specialist came to me in my room after I was admitted to explain that my entire colon was inflamed. She was worried that waiting too long and trying steroids would be detrimental to my health, not to mention cause us to lose more time in our attempt to stop the disease in it's tracks. I had been given the option to start Remicade, an infusion treatment used to treat Crohn's and Rheumatoid Arthritis in the past, but was reluctant to start it because of side effects. Dr. Flier had explained that if the benefits outweigh the risks of a drug, it could be worth trying if nothing else is working. My aunt, uncle, cousin, and Steven were there with me when I received the news that my bum had gotten so bad, and we decided that starting the Remicade infusion would be the best thing to do.
Over the course of the next few days, I was given potassium, magnesium and iron infusions. I was placed on a low residue diet with supplemental shakes in between meals that were given every three hours. After being so sick for so long, my weight had dwindled to a sad, 84 lbs. I have never been this small in my life. The day before I went into the hospital, I had dreams that I had to say goodbye to everyone that I knew and loved. It had actually crossed my mind that I could be dying. I pay attention to my dreams, and when lost loved ones visit me during the most powerful ones, I watch out even harder.
My love, sleeping next to my hospital bed. He hardly EVER left my side.
So incredible.
I can't believe that I had gotten so sick. I am always 'okay' when I flare. I am pretty much laughing the whole way through things. I have always had my sense of humor and taken things as seriously as I needed to, but this was the most terrifying experience I have ever had. I started Remicade treatment while I was still in the hospital, and I have been home for a few days now. The infusion itself was what scared me away from receiving the drug for so long, but it wasn't bad at all. I had a heating pad on my arm- ad nothing stung or itched that way that I had thought it would. I had no awful reactions, and am still feeling quite good after being sent home. I am waiting for my insurance coverage to make sure that I can have my infusions regularly as a part of my treatment, so that part is really scary. I know that it will be alright, and that I will qualify for what I need to in terms of having my treatment, but for a lot of people Remicade can be VERY costly, so I am looking out in every direction for the right paper work to make sure that I am covered.
You HAVE TO cover your ass when it comes to health care. Make sure that you know what you can be covered for, especially if you know that you're about to start a treatment that you won't be able to stop. Research this sort of thing BEFORE you get so sick that you don't have a choice in the matter. That's my advice.
I want to give a huge
Thank you
to everyone who has shown me support through this incredibly hard time. Steven has continued to be my rock, and I am grateful for every kind word, every sweet thought that people have sent my way. I want to show you all just how strong I can be in my healing by staying in contact, being as sociable as I can, and remembering that everything can be taken from us in an INSTANT.
Man, eating every 3 hours makes you realllly sleepy.
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Going home, a little more recharged with vitamins and love from around the clock care.
Once again, thank you from the bottom of my bottom. Without the strength that I have gotten from friends and family, I would have NEVER been brave enough to get through this. I am growing stronger everyday, and with more and more energy I am able to start living my life the way that I had when I was healthier. Little by little, though. I am very used to baby steps by now. And I am finally in a place where I am not scared to LIVE. <3
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