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.

The biggest misconception about this disease is the pain.  I can't begin to explain the excruciating or constant pain that Crohn's Patients go through. I think when you say you have Crohn's Disease people think, well you have to go to the bathroom a lot or at least more than they do.  That's the least of it people.  The real true problem with this disease is the pain.  It is constant for some like myself and at many times like myself down right more than we can take.  The fatigue caused by the constant dealing with the pain is draining.  You just become zombie like having to deal with hurting minute by minute, hour by hour and day by day.  The doctors ask about your pain yet they offer no help or solution.  In fact, GI doctors are almost unwilling to prescribe pain medications.  Yet, time and time again I read from others that the pain is the biggest complaint.  Imagine having a cramping period and then live it everyday.  Hmmmm, I bet they would prescribe pain medications for theirself or other family members.  Crohn's Disease is a chronic illness with daily chronic pain for many like myself.

Visited my daughter over the weekend.  I so enjoyed seeing her and happy to have the visit.  Came home and basically went to bed, so tired.  She basically has the energy I used to have before becoming sick.  It's nice to visit but even nicer to get home.   Home is my refuge and comfort.  When you don't feel well, being home is such a present that you sometimes take for granted.  If I run to the bathroom every hour there's no need to feel embarrassed.  If I need to lay in bed during the middle of the day, no one is judging or wondering why.  The relaxation you receive at home goes hand in hand at helping with the fatigue of crohn's disease and lupus.  Sleeping in my own bed and being comfortable is a huge help to the lupus and aches and pains that go along with it.   I used to love to go and hated to come home now it is just the opposite.  Home is my present that I give to myself.

I think I'm experiencing anxiety over trips, meaning making plans to leave overnight seem impossible for me to do as I most always don't feel well.  To give up the comfort of being home and having my own bed and dealing with the pain and bowels at home just seems to nice and convenient.  Some people just don't understand or want to understand this and maybe they are right.  I should just push myself and deal with it wherever I am.  Sometimes being social and pretending when you don't feel well is exhausting too.  So the two together are just so much to deal with.  I used to go everywhere, the one to make all the fun plans and invite everyone.  You would think people would understand more than they do, but unfortunately it's just to complex of a situation for others to fully take in.  So I feel guilt and I know I'm missing out but I just keep thinking things will change and I will feel better and be back to my old self.  This isn't really going to happen is it? 

Dr Oz Bowel discussion

Very hard night, couldn't fall asleep, heating pad and pain pill just didn't do the trick.  Woke up to horrendous pain.  So again my day begins.  Many trips to the restroom.  Dr Oz talked yesterday about normal bowles, showed pictures and had audience members bring in pictures of their own stools.  I found it very refreshing.  Normal bowels have a certain sound, look and feel.  Mine were exactly what he described as Crohn's disease.  If you weren't able to watch yesterdays episode, maybe someday you could catch a rerun as it was very interesting and answers all the questions that are vodoo to talk about.  I understand why I feel the way I do as my bowels contain all the nutrients from the little food I do eat and my body isn't retaining them.

My sister called me last night and could tell I was miserable.  Bless her heart for asking.  Most people including relatives just don't want to ask, know or hear about it.  Because it's the same thing over and over they get tired of hearing about it.  They think you should be better by now.  Can't some medication cure you, could you eat differently and seriously I think they think, are you really trying to get better.  It hurts when you know people are thinking like this.  The only way they are truly going to ever understand would be to have to go through this or something similar until then they will go on living their lives and not really caring.  I have one relative who means well but keeps telling me I need to get a bag and then my crohn's will miraculously go away.  Another one who suggests a certain diet and yet another who says I should try some medication.  Well I have tried almost everything, I have over 50,000 in debt from treatments, procedures, tests and medications I am no better off and actually worse for the wear because of it.  I really think I do just have to live with this.  Try to make the best of it and live each day and take what I am given. 

The pain kept me from falling asleep and kept me from sleeping long. Up at 4 a.m. in pain.  I'm supposed to go grocery shopping today, should be a simple task I know, but for me it just isn't.  I can't go and walk around and shop while I'm having bowel problems, thus I spend a lot of time stuck at  home.  If you know me, you remember me as someone who would go, go and go.  My life has so changed.  You just cannot muster the courage nor the strength to go and deal with this disease in public.  I think that's why it's so hard to work outside the home.  Forget missing work, running to the toilet etc.. Just the act of getting up and getting ready can be impossible. You can get up at a certain time and the whole time can be spent in the bathroom.  So, here I am once again bright and early dealing with this dam disease.

One of these days I'm going to post, all is well I feel great, unfortunately not today.  Pain all night long, tossed and turned and finally awake about 3 a.m.  Bowels that make me cry and feel like I may pass out all the while praying to god to get me through.  The pain is excruciating but I have to tolerate it and get through it.  I finally gave in and took a pain pill, always later than I should but I can't stand feeling hopped up on pain pills constantly.  So I must wait for it to kick in, it will help keep it at a dull roar until the pill wears off and I decide whether I can suffer through it again and so I begin each day, the same but some day it will be different.

So I received the $1200 bill for lab work from my Family Doctor.  When I called they said it just looked like I had a lot of lab work done and did I want to pay.  I said there had to be a mistake as my doctor is really good about telling me about large costs and letting me make a decision and he hadn't mentioned that the blood work that day would be over $1000.  So she said she would send me a detail printout.  I received it yesterday and it appears that I was double, triple and quadruple charged for the same tests making the bill so high.  I called and she said it was a good thing I checked my bills and questioned it.  How many things should we be questioning from our so called professionals.  Just because they say you need something done, do you really?  I could run to the doctors everyday at some point I have to take control and decide what is really needed and what isn't based upon intuition and experience with this disease.

Three hours of sleep last night and so the day begins with running to the restroom.  Yesterday was a  horribly hard day with my disease and today isn't looking much peppier.  The same pain in my lower right abdomen and not a little of pain, it hurts to sit, stand up and walk.  I got a bill in the mail yesterday for $1200 in lab work on one day.  Seriously, I called and they couldn't say much but are going to send me a print out.  Which doctor ordered $1200 in lab work and didn't mention it would cost that much.  First off I wouldn't have had it done and secondly, I would have checked with my coverage first or lack there of.  Then another one for $250 saying the doctor was a participating provider but not the lab.  Really? UGH!

Up again quite early as the pain wakes me up and of course the trips to the restroom begin.  But all in all it could be much worse.  I think when you are chronically ill your normal is quite different from everyone else and you resign yourself to the fact that you probably will never be the same, pleasing or not.  As many of you know my dog has been very ill, not only has it been exhausting but also very upsetting.  I am thankful that Crohn's hit me later in life as I don't know what I would have done had my children been young.  As it was they were teenagers, middle and high school.  Having to go through this at the time was hard and a huge life experience for them.  It's a big reminder that no matter what age you are, try to make the most of what you have and the most of each day.  Try to wake up pleasant and with a smile on your face and even if you aren't feeling so pleasant, fake it.  I have done that more than I care to remember.

I have been up since midnight, it is about 3:30 a.m., the pain is overwhelming. I can barely stand it.  Yes I have taken a full pain pill, but when this type of pain kicks in, nothing much helps with it.  I can't lay still or lay day it's just too much.  So here I am trying to take my mind off of it and not doing a very great job of it.  Hopefully as some point this morning I will find some relief.  Lower right abdominal, where it always hurts, the exact same spot every time.  Classic Crohn's disease at its finest.

Central Oregon GI Care Isn't Very Good

So I called this morning and cancelled my upcoming appointment that the last doctor (new doctor) made for me to see my old doctor, who I thought did me little to no good as far as helping me.  I am at my whits end with the GI care here in Central Oregon.  There is a large elderly population here and the bulk of who they see I believe is screening colonoscopies.  My original doctor now just works mostly doing these at the hospital.   So they never called me back concerning whether I received assistance for the $10K a month medicine they wanted me to go on which causes Lupus and I read possibly siezures.  I honestly don't even know at this point that I would take it.  They never called me to answer why he wanted a colonoscopy once again and hadn't discussed with me at my appointment.  When I called to cancel my appointment they didn't even ask why.  The reason they didn't ask is because they don't care.  This large clinic in Central Oregon is lacking enough doctors in this particular department to give good quality care.  I am disgusted, sad, disappointed and mad that they don't take care more seriously.  I feel I get better care at my local family doctors office.  Stop taking patients if you can't adequately treat the ones you have.  Furthermore, I am a particularly hard case, I realize that, but you would think I would bring on the need for them to figure it out and want to conquer the hard case instead of the daily screenings.