So I can really tell that my liver isn't well.  I have been ignoring this fact and hoping it magically goes away.  My bowel color, upper right pain, especially if I lie on that side and nausea if I take any medication.  But with Crohn's you have so many symptoms that dealing with more just seems like a terrible sick prank.  You try to ignore the things that are not causing you excruciating pain, because the pain symptoms overtake everything else, I can see where things can go undiagnosed with us.  What I am really trying to say is that Crohn's is so all encompassing that the other stuff seems insignificant sometimes.  I sat outside this morning and enjoyed some morning sun as I know that helps some.  I had terrible liver sickness when I was on Imuran, you feel like you have the flu and general malice.  But you feel like that with Crohns too. 

So the Trial Nurse called and said my last Liver lab was too sick to start the Stellar Drug Trial.  Even though Dr Bochner's nurse Jessica told me it was fine.  I cannot trust this person with any of my medical dealings.  Had I known back in October that it wasn't fine I would have stopped another drug I am taking.  So I am now weaning myself off and will go in and have my tests redone this week.  All we are looking for from these so called professionals is the truth, some just don't want to take the time to look and give that to you.  Dr. Bochner thank goodness is going to run my labs again and I will just take it a day at a time.  It would be nice to be able to take something to help with my disease but I will accept the fact that my liver is too sick.  I know he still wants to do a biopsy and I absolutely want nothing to do with it.  I will try and get more sun each day and hope and pray it gets better, even though I know the liver can regenerate itself, there does become a point where it can get too sick to do that.  But until I am sure I will just keep moving and working and dealing with not feeling well. 

After reading a comment someone left I find it very interesting that people think you should be able to take medication and get better, right?   Well, not so easy with this disease.  There is no cure and basically the best thing that can happen is that you manage your symptoms and miraculously go into remission.  Not so for myself, i have never experienced remission since being diagnosed.  I have tried all the hard core medications to treat this disease too.  I'm sure people get tired of hearing about it, I really can't blame them, I get tired of dealing with it. 

My hero is my 20 year old son who faces seizures on a daily basis since the summer before his Senior Year of High School.  He doesn't let it get him down, he forges on and does everything that he wants to.  He is an avid motorcycle rider and racer.  He is the first to say mama do you need a pain pill, you don't look well or is there anything I can do to help you.  He takes medication that really does help keep his ticks at bay but on the flip side makes him feel pretty crummy.  You couldn't tell that by looking at him, you would never know there was anything wrong with him.  He lost his Senior year of varsity Tennis because the school refused to make an exception for him not being able to take full classes soon after his diagnosis.  He loves to work, goes to school and my inspiration, anytime I start feeling sorry for myself, I remind myself of the plight he has taken on at such a young age and forge forward.  I never asked for Crohns Disease and he never asked for Siezures.  If he can do it, I surely can too.

So I am desperate for help and emailed my GI doctor and he actually got back to me very quickly.  I am impressed and thankful.   He is going to see about getting me back into the Stelara Trial.  At this point I can tell that I desperately need something other than just not eating and relying on pain pills to get me through this Disease.  So, I will take any help I can get.   Even though I have a sour taste from the care I have gotten in the past at the clinic, the Trial Nurse is a wonderful individual and very caring and I know she would do anything she could to help me.  So I feel there is some hope and will grab at anything that might help me.

This disease sucks!  It's keeping me from going places and doing the things I would like to do.  I am in a constant state of pain and the reality of it really bites!  Today I cannot sugar coat this disease one tiny miniscule bit.  The pain in my gut is constant and will not budge!  I emailed my doctor to see if I can get back into the Stelara Trial instead of waiting to see if I can get assistance for the Drug Cimzia.  I need help and the sooner the better.  This is an inhumane way to have to live. If I had decent insurance I would go to the ER, although all they could do is drug me up even more and I am getting real sick of pain pills.

Super hard night of pain and nothing would help.  Pain pills, heating pad, nothing.  Just sat up all night and all day today seething in pain.  Seriously, this is a tough way to live.  Pain is draining.  It literally zaps your brain cells and your energy.  You can't help but focus on how bad you feel because of the inability to concentrate to do other things.  Luckily, my family is helpful.  My Family Doctor called and I have an order to have my liver functions tested and need to go in and see him to get a referral for my possible hernia.  Unfortunately, there is an outbreak of Meningitis in our little City and they are wanting everyone to get vaccinated.  Because I am worried about being exposed to this, I am putting off going in and getting this done till this all settles down.  I will go into the small hospital area on Saturday when no one is there and get my blood work done.  I am not even sure with my immune system suppressed if I can get vaccinated and am not even sure I want to.   I quit getting the flu vaccine after getting terrible sick every year I received one.  On top of all of this I am fighting off my sons cold/flu that turned into Bacterial and after three weeks he went in and got an antibiotic to finally clear it up.   I will not be able to get an antibiotic to get rid of this, so I need to fight it off.