Received a letter that my GI doc and Rheum Doctor are leaving.  I am not surprised.  The GI care in Central Oregon at this particular facility really sucks!  I have been a patient there for over 10 years, frankly I don't think they really care at all about their patients.  They are all there for the money.  Seems to be huge lack of empathy for the really sick in this department and it feels like they are really there just to do procedures. No wonder they are having such a hard time getting doctors to come there.  This isn't just my opinion, I have heard the same from others.  I guess its comforting that I am not the only one who feels like they just plain suck!  Why would you become a doctor and see patients and not have some compassion and follow through to their care.  They are just there to spend their allotted 3 minutes with you and never hopefully have to talk to you again.  I think they are just being pushed to see too many patients. If the doctors were actually given the appropriate amount of time and follow up to take care of you I am certain they would give it their all and you would have good care.  It didn't used to be like this.  They have lost sight of their true reason for being in this particular practice.  Shame on them for giving in to the powers at be and letting it get this bad.  This is not a good area to live in if you are sick with bowel problems. 

As I was watching the History Channel this morning I found it interesting that John Kennedy was diagnosed with Colitis.  While he lived a privileged life I wonder what it was like to deal with a bowel problem during this time period.  There were not bathrooms to conveniently stop at like the more modern times we live in.  He seemed to be very thin and was told to drink only milk.  The lack of knowledge they had yet to learn about these diseases made the suffering probably all that more than what we live with in this day and age.  I still am in wonder as to why it's taking so long to figure out a cure for this disease.  What are we concentrating on that we can't figure out how to stop this from overtaking the lives of so many.  Are there more of us diagnosed with this or is it just the information age making it brought to the forefront to make it seem this way. Is it just about money and the lack thereof that keeps this on the back burner?  It just seems odd that there are so many theories yet so little being done.  If we had a president today with this, it would be wide news and at the forefront but yet back then it wasn't talked about.  Is it just more comfortable now or is it that we just lay everything out there for everyone to know!

Research is showing that your childhood can determine a lot of things for you later in life.  Common sense would tell you the same.  I can't help but wonder what part if any of my childhood has led to my health problems.  Youngest of seven, fairly poor although for a time I didn't realize it.  A lot of family strife that I was exposed to and probably didn't even need to know about.  Unfortunately, I was in the middle and saw it all.  Lost a parent at a young age which may or may not have been a blessing.  At the time of the loss my parents life was spiraling down anyway. Lost a sibling not that long ago whose life was hard too.  So my point is I just wonder how all this stress played a role in my insides.  It festered and festered till finally my body couldn't take it anymore.  I was carrying around the calm before the storm for so many years that finally my body said enough.  Now I avoid stress at all costs, don't want to be involved in others problems and generally avoid family.   This is my mental and physical way of helping myself and my health.  Now I don't say this to put anyone down, everyone does there best at the time.  My own children will look back and say, why did I have to go through this or that.  So it's not meant to point fingers, just to realize how much can one person take before something gives.  My give was my diseases.   

Really don't feel like blogging and really just can't.  Past few days have been horrendous.  The pain is overwhelming.  Someone close to me said well others have it worse.  Okay, I guess that's true but how exactly does that help me? 

Today is one of those days where no matter what I do, I won't feel better.  Just running to the bathroom and dealing the best as I can with the constant pain.  I am barely eating so it used to be what did I eat to really set me off, but when my diet consists of very little it's hard to tell what that something is.  Literally, I had some yogurt yesterday, boiled egg, canned fruit and 4 cheese sticks.  I stay away from most foods as they usually cause me problems and I feel bad enough as it is.  Today I have had a banana and a scrambled egg.  I hate pain pills, but as my husband reminds me, I really don't have much choice in the matter.  When you are seething in pain you have to do something to help yourself out of it and even then it's just a mask to a larger bigger problem.  The four letter word in Crohn's Disease is again that dreaded word PAIN!

Remission with Crohn's Disease.  Everyone talks about remission and that is the goal as there is no cure for this disease.  Personally, I have never reached remission.  In fact, if anything after many drugs and two biological drugs I haven't even come close.  All I have left from all of these drugs are side effects, a surgery to remove an infected growth, that by the way grew back.  Lupus from one of the lovely biologic.  Psiorasis from the same biological.  Liver problems from the drugs and I could so go on and on.  Aches and pains and Crohn's that has somehow become worse.  At this point, I have no faith in the medical community to be able to take care of this disease at least for myself.   Maybe mine is so severe they don't really know what else to do?  Maybe it's very hard to treat and they prefer to treat the treatable?  I get it, I wouldn't want to be on the medical end of this, it's bad enough to be the patient.  Maybe that's why my GI doctor and lupus doctor just left the clinic and they are unable to get doctors to move to this area. 

Fatigue, exhaustion, I'm not sure what you would call it, but I am wiped out today.  I have no energy, I hurt all over.  If I wasn't dealing with these auto immune diseases I would think that I have the flu.  Since, I don't have the flu I just have to try and keep moving.  It's taking every ounce of energy to not crawl into bed and just wait it out.  I went to bed for a while and forced myself to get up and keep moving, but it's hard.  It's really hard to feel like this.  But there's always tomorrow and another day can mean I might feel better and that's the hope I hold onto.