The perception with Crohns Disease is that you have a little bit of bowel problems.  Maybe too much Diahrea and some cramping.  I really think this is how the general public sees this disease.  Little do they know that many people live daily on pain medication.   Some are on pretty strong Biological Drugs similar to chemotherapy.  Many have other Diseases and or complications that they live with along with Crohn's Disease.  Most of had some sort of operation, resection or removal of some or all of their Guts.  The way Crohn's Disease is seen by others is changing, we are seeing more media ads and generally more and more people afflicted.  Seems that most everyone knows of someone with this Disease or something similar like Ulcerative Colitis.  Hopefully as things change so will the work being done to find a cure as that is really the only way we will be able to live pain free lives. 

It is very lonely to be a Chronically ill patient.  You hate to complain all the time, yet if people ask how you are doing, you want to be honest with them.  If you say you are fine, they will know that more than likely that isn't the truth.  I have found that when I was well I was relevant to my family members.  Coming from a large family I had a lot to offer my brothers and sisters.  Watching their children, taking them places, having them over for meals.  Now that I am cooped up and ill I have heard from one family member in the last year, to the rest I don't exist or my problems aren't as big as theirs.  That is the only reason I can think of for them to not care enough to drop an email or call and just see how I am doing. I know if something were to happen to me they would be all over it and would say they were so sad and missed me, yet I am not looking for interaction at death, rather during my life.  You learn to savor the people that care for you and truly care because they know that in health you may have more to offer but in illness you need them even more. Those are the few that truly care for you and aren't just doing it to stroke their ego, but to make sure you know they are there for you.

Sometimes I even surprise myself at the amount of pain I am able to endure.  Today was one of those days.  Just when I can't think I can stand it any longer, I some how manage through it.  There is something terribly wrong that we have been unable to come with a cure for this Disease.  So many people fight through the same pain that I go through daily too.  It shouldn't be like this.  But until something changes, I will have to keep putting on my big girl panties and fight through it, even when I think I can't endure it anymore.

The problem with this disease is that you need to eat to survive.  Every time you eat, it is a matter of your body fighting the food that ultimately needs to go through your digestive system.  You find quickly that food is a problem and hence other problems. Malnutrition, weakness, fatigue and lack of enjoyment.  I haven't eaten a meal in almost two years.  Absolutely do not go out to eat, no reason to.  I quit cooking about a year ago.   If you can eat for enjoyment, I say go for it.  Enjoy your food, don't over do it but don't stress.  Before this disease I stressed about everything I put in my mouth due to bullying about my weight when I was younger. I wished I had ignored all those comments and just lived life.  So if you aren't sick and are able to, enjoy life and live.

Daily there are commercials advertising Humira for Psoriasis and all the quickly read warnings and passed by like a flash of light.  But those warnings came true, I caught TB, Liver Damage and Lupus from taking Humira.  God only knows what else could go wrong form the Humira use and long term Remicade use.  These are highly dangerous drugs being used routinely.  I can only hope if I keep saying it that someone will stop and think about whether the consequences are worth the use.  I never in a million hundred years thought that on top of Crohns Disease I would now battle three more things.  If I had to do over again of course I wouldn't take any of these drugs but unfortunately I cannot undo what is done.  So my hope is you will read this, pass it along and think twice.

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.