Bowel Disease One Global Family is a new Facebook Group I have joined.  You may want to consider joining or checking it out.  It's interesting to see where everyone is from and meet some of my Twitter contacts.  The biggest thing is that I am amazed really how many of us there are and how quickly this group is growing.  Being open and not afraid to talk about it, is I guess a good start. 

So I went and saw the Infectious Disease Doctor for my positive TB Test.  Latent TB.  I should really go with my gut as I knew it was a waste of time and guess what?  It was a waste of time.  He was super nice and friendly but for $495 for an initial visit should come more prepared.  Basically he spent the whole appointment trying to use the laptop which is now mandatory for the clinic.  He couldn't find my tests in the files and my insight into the situation of my positive test was right.  My liver is too sick and my Crohns would suffer too greatly to take the chance of treating the TB.  Somewhere between September of 20111 and February of 2012 is when I contacted it.  I wanted to know if the test was a negative, positive or a range, could it be a lower positive or higher.  He just couldn't find the results and then got pages too many times.  I almost walked out.  So I am going to try and find the answers myself. He said he would and call me and it's been a few days and I have heard nothing.  Probably time for him to retire too.  But like I said, great bedside manner and very nice.  Nice doesn't help me.  Without treating the TB, I will be unable to take Biologicals which lower your immune system and would make me more susceptible to getting TB.  The treatment is 6-9 months and can be expensive and needs to be done under supervision.  I can't live without my liver, I can live with a positive TB and all the other problems I have, so I will just forge on.  I will though have to be careful being around sick people.  He did say my liver didn't seem enlarged, this is good.  I really need to stick with my instincts on all of this medical stuff, generally I lead myself in the right direction.

I would caution anyone going on a Biologic drug to get another TB test no matter how long it has been.  Mine changed in a matter of months. 

I am by no means a weakling.  I had two drug free natural child births.  I know pain.  But passing bowel with Crohn's can and is overwhelmingly painful.  I have to literally pray to god to help me get through it and if not I ask him to bless my soul.  I really don't think the doctors have any reality to what we really truly go through.  I have never experienced anything so painful in my whole life and living with it on a day to day basis is just exhausting.  The saddest thing for me is that I wished I was the only person going through this, but it seems to have become an epidemic.  There are so many of you out there experiencing the same things.  Maybe if the physicians in this specialty had to live with the patients for a period of time before finishing their residency it would shed a whole new light on the severeness of this horrendous painful disease.  I will just not eat today and hope that things will calm down.

Going to to the doctors gives me anxiety.  Now I realize in my intellect how silly it is to let it make me anxious but I can't seem to overcome it.  The whole thought seems like such a waste of time, as nothing seems to change and they never really seem to have any suggestions of real inventive ways to make me feel better.  I think I have really built up an intolerance to the whole idea.  I should really just relax and whatever happens, happens, but I just can't seem to go there or get there.  So I know feeling like this is just plain silly and the more I let myself feel this way the worse it gets.  You would think as a doctor the whole idea of a really hard case would be exciting and challenging but instead I feel like they look at me like really, you know the answer, why are you here.   Somewhere deep down I have some hope, so I keep going and expecting something else, we will see.

It was a long, long night.  I slept maybe three hours if that and it was just pain all night long.  Today I am just barely functioning.  I cannot imagine getting up and going to a job.  Thank goodness my kids are raised.  Tomorrow I see the Infectious Disease Doctor concerning my positive Latent TB Test.  I know there is nothing I can do as strong antibiotics would kill my Crohn's, but it can't hurt to check.  I'm really in a pickle as I'm never going to be able to treat my Crohn's if I don't get rid of this positive Latent TB.  Most all the medications require a negative TB Test.  Along with that problem, I'm not sure my liver could take any strong medications either.  I am in a no win situation.  I just continue to limit my eating to try and keep my symptoms at a dull roar although that really isn't working either. 

My life and body doesn't function the same way it used to.  People who haven't been around me in a long time expect the same energy from me and it puts pressure and for lack of a better word to "PERFORM".  I am unable to go, go, go and do, do, do.  Having company for any length of time just takes the life out of me.  Really it is just too much.  Just being on all the time suck the energy out of my soul.  Before I used to be able to be the life of the party and entertain, it just isn't so anymore.  I need to choose wisely and be more vocal about whom I am going to sacrifice my health and let visit for more than a day.  We recently had company and it just through me for a loop.  I am so sick and just feel depleted of energy.  I hope I am not the only one who feels this way, is it just the drawbacks of being chronically ill.  My heart goes out to those of you who have to go and put a smile and brave face on everyday to go to work and it is the very last thing in the world your body wants you to do.

Everyday I get up and push myself.  I miss the days where I woke up with energy and feeling like I had life by the horns.  Now I feel like every movement has to be thought about and I literally have to pull the strength from in myself to keep going.  Where did things go wrong?  When I was diagnosed with Crohn's Disease and then GERD and then LUPUS and then LIVER Illness and LATENT TB.  That's where things went wrong.  All of these symptoms and illnesses have sucked the life out of me, but I won't give in as many don't, I will pretend I'm okay and push through it.