The husband and I had one of those weekends-so freaking
lazy. It was perfect and awesome. We needed it. Or at least I did. With all
that has been going on with my body lately-loss of blood, weight loss, extreme
tiredness and extremely inflamed intestines-it can make this little girl pooped
out! My body just needed to rest.
We slept in Saturday morning and made the most amazing
breakfast we have ever made in our kitchen-Turkey bacon (because real bacon and
the grease upsets my stomach), scrambled eggs and the cutest heart-shaped
waffles (Isaac bought me the heart-shaped waffle maker our first valentines day
together). We also brewed a pot of coffee in our brand new coffee maker
(wedding gift!) only to have the smell of coffee throughout our one-bedroom
apartment. I love coffee, but I can’t drink it often because it also upsets me
stomach.
For a Crohn’s patient, caffeine,
alcohol and fatty foods are big
triggers to stomach pains. Sometimes, I will put them in my diet if I am
having a “good day.”
We watched a plethora of movies this weekend: Aliens (one of
Isaac’s favs), Bridesmaids (so awkward!), The Lucky One (ehh, not one of
Nicholas Spark’s best), and some Lifetime movies that were on TV. What would a
girl do without the Lifetime channel?? Those movies just seem to draw me in and
before I know it, it’s been two hours!
I didn’t have a whole lot of energy this weekend, because Prednisone is causing my heart rate to
be crazy, which then makes me very tired. Sometimes I feel like I have a hard
time breathing.
Late Saturday night, I had horrible bloating and sharp pains
in my gut again. I was so tense from the pain that it cause me to become very
anxious. My heart rate went up, tightness in my chest and it was hard to
breath. We considered going to the ER, but once I took a Xanax, drank some
Chamomile tea and took a hot shower to ease the pain and relax me, I felt
better.
When I have Crohn’s pain, it is very hard to relax. It is
hard to think straight. It is hard to assess my body.
Sunday I felt pretty good all day. I was all ready to crawl
into bed just before 10 pm to get a good night sleep when BAM! I had to run to
the bathroom. For the next 2 hours,
I was stuck in the bathroom with terrible diarrhea and aches and pains through
out my lower back and abdomen. It literally feels like my intestines are being
twisted raw. Finally around midnight, I fell asleep with a heating pad wrapped around me.
Good news today! I received a call from the drug company Cimzia, which is the new drug I am
supposed to start soon. It has been finally approved through my insurance. I
will be receiving calls this week about delivery of the drug (I have to be
available to sign for it and receive it, because it has to be refrigerated),
and scheduling a time with a nurse for education on how to inject it.
This is what I found
out about Cimzia so far:
·
For the first 6 weeks, I will administer two
injections at once every 2 weeks.
·
Starting on week 6, I will administer one
injection every two weeks. That will be two injections per month.
·
The injections are delivered in kits. 1 kit
includes two injections.
·
My co-pay for one kit is $70. However, Cimzia
will be providing me with a $500 co-pay card to cover most of the costs. Not
bad!
·
Online it says I need to get a TB test before….I
will need to ask my nurse about that. No one has said anything to me about a TB
test yet.
·
Common side effects include:
o
Irritation at the injection site
o
Joint pain
o
Upper respiratory tract infections (the drug
lowers your immune system)
o
Urinary tract infections (these are so painful!)
My doctor told me that it may take up to 3 months to really
notice a different and see if the drug is working! Dang. I hope I do not have
to be on Prednisone that long.
All in all, I am excited to start Cimzia. I am ready to see
if it will settle my inflammation and hopefully lead me to a time of remission!
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