Remicade Headaches?

Just noting that I've had headaches every day since my Remicade infusion.  Two have woken me up in the middle of the night.  Hopefully they will subside soon.  Anyone else have this experience? 

Fourth Remicade Infusion with Iron Infusion Yesterday

Well I finally got my fourth Remicade Infusion yesterday. Tried to take a few pictures so I can share the experience with everyone.  Everything went great and I had a nice nap during the infusion.  Drove myself there and back home with no problems.

Just before my Nap at the Infusion Center
 

Feeling great today.  They said the iron infusion will take a couple weeks to start feeling any better.  That's okay, I'm a patient girl.  I'm heading to work out in an hour.  Whoop!


Preparations for Poking Me

My nurse Rebecca is awesome.  She gets that IV going with no problems and she's really sweet.  She brings me pillows and blankets and makes sure I'm doing okay and I'm as comfortable as possible.  I told her they need to get better recliners because the one I always get reclines into this really weird position with my feet up high in the air and the back doesn't go down.  She brought me a Remicade embossed neck pillow that helped immensely.

Initial Poke

I also suggested they offer mani's and pedi's during infusions but I don't think that's going to happen.  LOL!

All Hooked Up and Taped Down

My blood pressure was good from beginning to end. Usually it's a little high when we first start but it was good yesterday. I guess I'm not very nervous about it anymore.

La Machine

Darn it Rebecca woke me up for the iron infusion.  Didn't feel a thing.  Hard to imagine all that iron going into my system at one time and I don't feel anything different.  Apparently it takes a while to work.  Plus I have another infusion of iron with the next Remicade infusion.  Guess they can't give it to you all at once.  The used Injectafer 750 mg of iron and I'll get the next 750 mg dosage at the next infusion.



Woo Hoo!!  Iron Going in Now!

 

So after the iron infusion they made me hang around for a little bit to make sure there were no adverse reactions.  I was really ready to go!

Sleepy Girl wants to Go Home Now

 

Other than sleepiness I have nothing to complain about.  (How unusual for me!)  I got home safely and took care of a few things like taking my daughter out shopping for shoes since she lost one of her Vans. She was wearing her winter boots to school and it's hot outside. Then I got into my cool fluffy bed and had another nap.

Rockin Out of the Parking Garage Yay!

I had a terrible time getting to sleep last night.  I think I was up till around 2:00am and then slept very lightly after that.  No wonder with all the napping I did yesterday.  I'm feeling normal today which is a great thing.  I actually feel better than I did before I went in yesterday.



Trip with Crohn's

We returned from a trip to Galveston on Friday.  It was a great trip, the weather was nice and my Crohn's behaved well.. which is a good thing because the exhaust fan in the bathroom didn't work!!



Mom and Me on the Beach

The kids had a good time too.  They spent all day outside at the pool or on the beach.  The condo was not the greatest as far as cleanliness but we disinfected everything so we survived!  I don't know if I'm a germaphobe or what, but I'm always scared I'll get a stomach bug when I travel.  After all.. that's what started the last 6 years of flaring.  So I'm always careful.

Daughter and Her Friend Having a Blast at Galveston

This week I've returned to my exercise routine.  I work out at noon almost every weekday with aerobics and strength training.  I've been pretty bad about it over the winter months but I'm forcing myself to get back into it.  I had such low energy and such a hard time staying warm, the last few months, that I sort of dropped out for a while.  I'm so glad I've gone back to because the women I work out with are so amazing and nice and supportive. 

 

My next infusion is on Monday so I hope it doesn't drag me down.  The Remicade infusions lower my energy for a while and give me headaches.  Maybe my body will adjust to them over time.  Does anyone else experience this with Remicade?  Also looking forward to the iron infusion the same day.

 

So Spring break is over and it's back to the old routines.  At least the weather is warming up a bit and hopefully I'll have the energy to work in my gardens soon.  It's been so neglected the last few years that I have a lot of work to do out there.  We have water restrictions here so a lot of plants have died.  My backyard is beginning to look like a desert wasteland.  Gotta fix that!!

Venting About Crohn's

Okay so I posted already today and I'm still trying to figure out how to Blog.  I don't know if anyone is reading but I'll keep on writing. 

I was surfing around and I noticed some questions on the internet from guys asking about weather or not to date a girl with Crohn's.  OMGsh seriously?  I've been married for 28 years and have three beautiful children.  I was in remission when I met my husband and for most of our married life.  I've been sick the last six years and he has been my greatest support.  Dear Lord people.. when someone gets sick you help them.  In my opinion, Crohn's sufferers are some of the strongest people on the planet.  Sure we have our tough times but we struggle through it and most of the time we do it as silently as possible. 

There is no cure.  There are good times and bad.  You do what the docs say to do to try and get it into remission and you don't give up because you can't.  You go through terrible pain, all kinds of nasty tests, hospital stays, extreme fatigue, hair loss, weight loss, a miriad of drugs that don't work and some of which can have very detrimental side effects, you try every vitamin and mineral supplement that's recommended, special diets, operations, sometimes you can't work or travel, etc..  But you are strong and you keep looking for answers.  Very strong.

A lot of times I see glimmers of hope on the internet.  "A cure for Crohn's" type stuff.  I read them with a serious grain of salt because sometimes you go into remission with this disease on your own and you have no idea why.  No one does.  Is it possible that they were on a certain drug or a special diet and their body simply decided to go into remission on it's own?  I first went into remission at the age of 16 when I started smoking.  My disease started up again 6 years ago when I quit smoking.  So are people going to say smoking cures Crohn's?  Heck no!!  In fact they say it makes Crohn's much worse.



Random I know but.. Yay!  Painters just finished the crown molding

I wonder what the next weapons in battle against this disease I will use if Remicade doesn't work.  I've heard a few interesting things.  LDN, FMT, Marijuana?  Who knows?  Hey I'll never give up.  You just can't.

I can't begin to name the therapies that have already been tried on me.  As a kid, I can't remember most of them but Azulfadine was the most predominant and of course steroids.  In the last 6 years it's been Prednisone, Asacol, Methotrexate, Humira, Azathioprine, Entocort and Remicade.  I'm sure I'm forgetting some but who cares at this point!  Crohn's is a bitch we just keep on fighting. 

Crohn's and Spring Break Next Week!

And I can't wait!  It's been getting more and more difficult to get out of bed at 6:00 in the morning in the cold, dark weather, to get my daughter off to school.  Add that "spring forward" time change and it's been almost impossible!  We need a break.  We're heading to Galveston and I hope it warms up down there. 

My Crohns is doing okay.  I am not the energizer bunny by any means.. but I'm getting along fine.  I wish I had the energy that normal people do.  Maybe sometime soon.  I hate being a wimp!  I keep planning on going back to working out.. and then I just can't bring myself to do it.  Not like me.  Maybe after the Iron Infusion I'll be an "Iron Woman" again.

I've had contractors at the house again this week.  We're tackling fence staining and crown molding in the kitchen.  I can't imagine how normal people live.  I seem to continually have contractors around for one reason or another.  We've been in this house for 19 years.. that might explain it!



Hiding in My Office!

 

 

A Rough Day with Crohn's Disease

So I've tried to remain upbeat but today is tough.  A few days ago my Entocort was reduced to one pill per day.  I can definitely feel the difference.  That volcanic feeling in my abdomen is starting to return.  Maybe it's a withdrawal from the entocort and my body needs time to readjust.  I've had lots of headaches and been very tired. 

Had a very painful stiff neck for several days but that's on the mend.  A headache woke me up and kept me up through a good portion of the night last night and I'm having trouble starting my engine this morning.  Feeling slightly achey and cold.  Please Spring.. come soon!  My elbows ache which is very strange.



Forcing Myself to Get Going!

 

Drank some hot tea and had a long hot shower.  Felt the same way yesterday but forced myself to get out and get things done.  Guess I've got to do the same thing today.  Any suggestions out there?  Give me strength..

Keep on Living with Crohns!

Well I've finally returned.  There is a huge water leak under our house and this is our fourth day without water.  You never realize how much you need it until it's gone.  Excavaters are digging a 19 foot tunnel under our foundation to get to the leak.  This is how much they dug out yesterday.

Backyard looks like a Rock Quarry

Should be another full day of digging before they reach the leak and then hopefully we'll have some water!

 

So as far as my Crohns.. The doc reduced my Entocort to 6mg per day and I saw an immediate decrease in my QOL.  So I'm not sure if the remicade is doing much.  The plan is to reduce to 3mg per day for a month before my next infusion.  Not sure how that's going to work out. 

 

Apparently I have Anemia from chronic Crohn's disease as well and they plan to give me Iron Infusion Therapy at the same time.  Seems like a long time to wait for the iron.  I'm thinking I need to send my doc an email and let her know what the infusion department is up to and what my status is. 

 

Seems rediculous but you really have to stay on top of your own health care!