Some days I am just trying to keep my head pointed up and straight.  When others interact with us as Crohn's Patients they probably have no idea that our head isn't on straight.  While we may look like we feel okay, we might just be trying to function in the simplest form.  Patience is something that more people need to have and understand when dealing with us.  Especially those closest to us.  It's not going to help us by getting frustrated or expecting more than we can give, we are living every day to the best of our potential and while some days may be not seem like, believe me we are.  One of my biggest problems is the lupus fog and I even had it before I got lupus.  It's just the mixture of feeling pain, exhaustion, week, overwhelmed with illness and I could go on and on that make it hard to function like the rest of you.  So give us a break, don't expect so damm much and go a little easier on everyone else you know living with a chronic condition.

Not only is my Crohn's severally flaring but I woke up completely stiff and hurting in my joints.  So much so I couldn't stand completely upright.  My husband said it reminded him of his father, hunched over.  I took a  shower and while I was in there, the tub was filling with water.  I soaked in my tub with the jets for a long while and it did help things.  I was able to take the dog for a short walk and then the Crohn's pain took over.  I have started drinking Acai Berry to try and help with the inflammation.  It tastes not so good but is tolerable. Does it help?  Like everything else I take not really.  But I am willing to try and do just about anything to help.  I continue to consume very little and keep the foods that I do eat to a very soft consumption.  Yogurt, soft banana, organic peanut butter and occasionally a piece of bread.  What I would really like to eat of course, would be a great big salad, nuts, vegetables and a big piece of salmon or chicken but I have stuck to this diet for a year and a half and I will continue as anything else absolutely kills me.  I continue to consumer my probiotics, multi's and all the other vitamins in the hopes that something will make a difference.  I am still hopeful with the research that is new that replacing our immune systems will ultimately be the way to go.  Otherwise we are just treating a non-stop out of control train that continues to run harder and longer.

The pain today is over the top, horrendous!  It literally hurts to sit, stand or walk.  My lupus is flaring and I just generally feel ill.  I slept in and out through pain and finally gave in and got up and sat in the restroom most of the morning.  People just don't understand what it's like to live with this.  It is just no fun at all and it just seems to progressively get worse instead of better.  I was disappointed to be denied the Drug Trial to replace your immune system.  As drastic as it seems, I would clutch at anything at this point to feel better.

Yesterday I tried a trip to Costco, never again.  It is just too much for me.  The pain when I walk is unbearable and I am perfectly happy to stay at home and not endure that.  It seems like it should be so simple but the constant pain just makes everyday things in life very hard to do.  I used to enjoy walking around looking and everything and sampling food.  If it hadn't been for the fact that it was 100 degrees I would have sat in the car.  Pushing myself through these things just makes it worse for later and later I did pay for it.  Staying at home and being as still as possible is much more enjoyable that going through situations that seem impossible.  My lupus is flaring, my crohn's is flaring and only having to deal with myself is about as much as I can take! 

Wow Crohn's kicked my ass yesterday and then some.  My husband actually jimmied the lock to come in and help me by giving me a pain pill to get it kicked in as soon as possible.  Today it literally hurts when I walk, my lower right groin stabs and I have had it checked before as I thought maybe I had a hernia.  Who the heck knows, maybe that is the lupus talking with the stabbing pain.  You seriously have to live life to the fullest as you don't know when and where your time will come and you will be stopped in your tracks as I have been only to live each day through your illness.  I'm not whining, I'm just saying I like the rest never thought in a million years that this is how my life would end up. Just saying.

Yesterday I ate a banana and a cup of Activia Yogurt.  I changed five times and bathed three.  That pretty much was my day in a nutshell.  I guess it explains how I felt pretty clearly.  The only good thing, is that I am able to be home and not have to be out and about.  It makes a big difference in having to deal with these type of life issues.  I can remember being in a classroom and wondering what the heck I was going to do when this disease first kicked in and having to run and use the students restrooms, not fun.  Then having to bring changes of clothes with me to work as many times I would have to change before or during my day at work.  So being home is just so nice, it's hard enough to deal with this crap, excuse my pun but being home just takes the stress off of it.  So for those folks on disability with Crohn's Disease, they more than deserve it.

My son started juicing to try and see if he could help his epilepsy which came on the summer before his Senior year in High School.  So I have been trying a little each day to see if I can tolerate it.  This morning it was like giving birth, there is  no other way to explain the pain.  Screaming and crying trying to get through it.   It is just so intolerable.  I don't know if it's the little bit of juicing I am trying.  It tastes wonderful and I could easily do it for every meal but I am not sure it is worth it.  My son found that he couldn't do it strictly without food as his epilepsy just wasn't liking it.  You read and hear about how people are magically cured juicing or going some other natural route, that's just what it is, magic.  It is mean to put forth claims and then put people who are struggling anyways in such harms way as to try things that may in fact be healthy but just are not going to work to cure their diseases.  These diseases did not come on overnight and nothing we do is going to cure them overnight, if it's too good to be true, it's too good to be true.  I always wondered how all that fiber was being tolerated by patients with Crohn's Disease and it obviously isn't.