Christmas Day I spent the afternoon on the bathroom floor and crying and rocking in bed.  Luckily I was able to spend Christmas Eve with my family and it was the aftermath of having too much fun.  But the pain really kicks my ass.  Pain pills, heating pad, soaking in a tub, nothing works for this type of pain. It's like someone has a vice and won't let go and it is a searing strong pain.  I would do or take anything to be able to get some relief as I sit here it's just a dull roar.  It is really maddening to have to deal with this as I'm sure many of you know.  Sometimes relief just seems nonexistent when we need it. And that is my Merry Christmas.   Crohn's Disease just doesn't care if it's your Birthday, Anniversary, New Years or Christmas it comes when it comes.

I have become somewhat of a shut in and have had to accept that about my health and situation.  I used to be the life of the party.  But what is most hurtful is when you are unable to go to gatherings and you hear behind your back how snide comments are made about why you didn't come.  Not only mocking how you feel but kind of making fun of you.  No one chooses to stay home and not be able to get out and enjoy life.  But if you are sick enough that you need to stay home, you surely don't need others making fun of you are talking about you in an unpretty light.  I realize that the decision to save my energy for the really important things in life was the right decision as anyone that needs to use the sick and down hearted to poke fun at are not the ones that you waste your precious energy to be with. 

Usually I can put a positive twist on being chronically ill, but not lately.  I really just feel damm sick of the whole thing.  It's wearing on me and I really hate that I am even letting it get to me at all.  I should just accept my fate and make the best of it with a smile on my face.  I'm tired of smiling and pretending everything is okay because it's not.  It really, really is not!  It doesn't go away and it doesn't get better.  I have plenty to be thankful for, don't get me wrong.  But I have plenty of health problems that are becoming impossible to deal with on a daily basis.  If you have to scream to have a bowel movement and feel like you are going to pass out, I imagine that is why I am feeling at my whits end.  I am only human and can only endure so much suffering.  It isn't a pity party, it's more like I am really mad.  There are millions of us feeling exactly as I do yet there is no cure in sight.  For a few select few who catch this disease earlier in it's inception they can have a period of remission for the rest of us, it's a living hell!  I realize what I am saying isn't pretty and not an easy read but I just needed to say it.  I'm sick of this shit, no pun intended.

I was so thankful to have a decent day yesterday but then it hit me.  Nausea, pain etc.....  So it continues today.  I despise nausea, give me pain and bowel problems any day over being nauseated.  But I guess I just have to take what is dealt to me and make the best of a bad situation.  Many severe Crohn's sufferers such as myself describe this disease like having the flu 24/7.  It's true, it is so similar.  My joints are in severe pain, so much in my shoulders.  Nauseated and I don't dare eat.  It feels like the start of backing up and if you have Crohn's Disease you understand what I am saying.  When you don't have regular bowel movements and your nausea starts in, it's a bit scary.  If it's not coming out well then it shouldn't be going in.  It is never a dull moment being ill, that's for sure.

I spent the morning in the bathroom screaming into a towel.  Really?  This is what my life has come to?  Other people suffer like this too?   How can this disease be so horrific and so many people have it and suffer and  nothing is really being done?  It makes me sad not only for myself but the millions of other sufferers.  This is no way to live.  The medications available are only bandaids.  They don't cure this disease and come with some very serious life threatening side effects.  That was the start to my morning.  I immediately take a pain pill and then the suffering begins.  I don't qualify health wise to take Stelara, it comes with a dangerous side effect of the brain that could kill you and liver damage taboot.  Cymzia another one that comes with serious side effects including heart damage, liver damage and lupus.  Those would be my choices if I was well enough to be able to take them.  I have tried the natural path too, nothing works!  It is so disenchanting that not only do we suffer but the choices are so damm limited.  The strong drugs are biologicals often made from animal proteins, they are so dangerous that it is only out of desperation that you try them.  We need more research and only then will we figure why we have this disease and then maybe we can adequately treat it.

I literally wake up unable to sit up by myself because my Lupus pain is awful.  It is in my shoulders, elbows and knees.  That along with Crohn's pain in my lower right is just plain getting old.  I awake feeling like I have been on a bad drunk the night before and would think I am terribly hungover but it is just the combination of Crohn's and Lupus symptoms that is making me so sick.  The last few days I haven't had an appetite and find the less I eat the better I am able to deal with the Crohn's pain.  This is not a very good quality of life, I realize this but what am I to do?  Nothing is changing and seems that I am progressively getting worse.  My only hope is that my liver heals enough that I might be able to eventually treat the Latent TB and therefore eventually be able to treat the Crohn's and Lupus.  However, I say that with gravity as I am not sure what I would be willing to take out of the few drugs I have left.  There are about three I haven't tried and each have grave side effects.  After contacting Lupus from the last drug, I am hesitant to try any medication in the future.  But as I see my health fail, I might have to change my mind.  This is hard existence but it is my life and I have to try and make the best of it.  I feel terrible that my family has to go through this with me, it makes me sad to put them through this.

I think being chronically ill should afford you a few breaks from those around you.  God knows you aren't getting any breaks from the universe.  It is not an easy road.  To wake up everyday and put a fake smile on your face and make the best of a very bad situation.  If you really woke up and let everyone around you know how you truly felt, no one would want to be around you.  So shouldn't we be able to catch a few breaks.  Leave us out of the bullshit, try and make our lives a bit easier.  Is it really too much to ask.  We barely have the energy to function most of the time but to deal with unneeded stress and to put our energy to things that we really shouldn't have to be dealing with.  It is not an easy road. But just a bit offered by those closest to you can make that road a bit easier.

It is Crohns Disease Awareness Week.  Approximately ten years ago I had never heard of this disease.  Had no idea what I had been diagnosed with.  I just new I was terribly sick.  Ten years later I know much more than I did then and continue to be just as sick if not worse.  But the difference is that I now know many, many people who suffer with the same symptoms and pain that I deal with.  There seems to just be more and more people dealing with this every day.  They seem to be getting younger and younger too.  It is just devastating to think that a young person has to live the rest of their life living with what I deal with on a daily basis.  It really is a terrible quality of life and to think that little folks have there whole life ahead of them with this in mind is just a devastating thought.  There is no cure, for a few lucky ones there seems to be a stabilization or remission that they are able to reach, for the rest of us it can be pretty ugly.  Hopefully with the awareness reaching more and more they will come up with a cure or even just what causes this.  The hope that in my lifetime I might get some of my life back is my hope but even more so is the hope that the younger generations won't have to live with this for the rest of their lives.