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..