This disease is sucking the life out of me.  I'm sitting here full of pain pills and a heating pad on high in order to do this.  I have made a call into my doctor and am going to go in next week and have my liver labs drawn and iron. I am desperately in need of a Hysterectomy and the only way I am going to get it is to show my iron is low.  It's on the borderline and the pain along with my crohn's is sending me over the edge.  Asked my hubby if I should go to the ER and like he said there isn't much they can do for me, so we are going to talk with the doctor about something stronger for the pain.  If my liver labs are better I'm going to see if I can go back to the Trials Doctor and talk to him about some kind of medication to get my flaring severe crohn's under control.  Until then! UGH!

It is Thursday and everday this week has been a replay of Sunday.  It's not getting any better or an easier.  This is a really hard way to live and is trying my patience. 

C-Chrohnic Pain
R-Relentless Diaharea
O-Only You Understand
H-Hell! Daily.
N-Never ending Pain
S-SHIT HAPPENS

Living Daily With Crohn's Disease

Today I thought I could leave and go to run a few errands!  WRONG! WRONG! WRONG!   Of course when I was ready to get in line at the Dollar Store I couldn't wait any longer.  Luckily, like most Crohn's Patients I know where every bathroom in the state resides.  Off to Starbucks.  My husband is patient and sits patiently in the car knowing that it may be a very, very long time before I come out.  Then off to another errand and so the same replay of the same problem.  Tried to sleep with my heating pad last night and basically tossed through the night only to wake up to pain and problems with my bowels.  God help everyone else who has to live this kind of life as today really SUCKS!

At one point I was on a very expensive drug that was a pill form and in conjuction along with it  I had to give myself injections of a drug that used to be used to induce abortions.  Problem was that the injection drug was very hard to find.  I would call all over trying to see if anyone had it available.  I would get no real reason as to why it wasn't available.  It was cheap too!  Doesn't it seem odd that the cheap drug was so cheap and hard to get.  Yet these very expensive drugs are readily available if you have the money.  Eventually, my live once again got very, very sick, not from the cheap drug but expensive drug (FIGURE THAT ONE OUT).  So I had to stop it once and for all.  But I still remember thinking, if I lived up north I could get the drug in the other country, why was it so available there but not here in the good old USA.  I am studying another drug that is also cheap.  Is showing promise and when I mention it to my doctor she poopah the idea.  So I am going to continue to research it and will talk about it soon. 

I have to discuss the costs of these "Big Gun" Drugs.  I understand that it takes money to run trials and test these drugs.  But really!  I know many patients are able to take advantage of some assistance, thank goodness.  But there are still a lot left out in the cold unable to afford these expenses.  I know myself my debt from my health is astronomical.  I looked into the possibility of the next new drug today and my insurance would cover it with a 40% copay and up to $2500 a year.  The assistance covers $500 for a copay up to 17 times.  Lets talk about this.  First off the wholesale of the drug is $1400 an injection, that is cost.  I think retail is about $5K.  Now tell me why does it need to be marked up so much.  At 5K my insurance would cover a 1/2 of an injection.  So much for me being able to go onto the next drug available.  I know I am not alone, there are many, many and countless others who are in the same situation.  We have government paying as said on the news $8.00 for a cup of coffee and $16 for a muffin on our dime but we don't have health care.  Hmmm.  Maybe they could all bring their own food and we could take care of our countries health problems.  Just saying.

Look for things that bring you small Joys

So I am officially unable to participate in the Trial.  I am going to followup with my Doctor and have my liver labs redone.  If there is a change then I will continue to followup every month till they are better.  If not, I need to see a GI for testing to see why they aren't getting better.  I pretty much feel like crap. I feel bad for others in the same position that I am in.  It's a hard go when you are not feeling well.  I slept from 8 pm to 9 am and the only reason I had to get up was a trip to the Golden throne and then so it continues.  If your feeling bad too, try to look at the bright side of life.  Remember the things that make you happy everyday.  I enjoy a good cup of coffee, the 80 plus degrees in September and I LOVE wearing shorts and tanktops, I have a Soprano video to watch today and I am almost done reading a great book!  Look for the things that bring you small joys!

This morning I am really appreciating my family.  I was up all night with severe pain, not even pain pills, heating pad or sleep aid could help me get any rest.  Up and down to the restroom, my poor dog finally left the room and went and slept in the spare room.  My boys are gone and so I was on my own and it's not easy.  At one point I contemplated going to the ER as I often do.  Knowing that unless there's an obstruction there probably isn't a lot they can do for me.  I finally gave in and got up.  Personally, I think if you are in a severe flare as I am you need a caregiver at home with you.  Being on your own is just too tough.  I suppose if you are in remission or your crohn's is moderate maybe you can make do, not to make light of any crohn's symptoms.  That's why I can't understand the inability for crohn's patients to get social security benefits.  So I am up and trying to not think about how much I really hurt and maybe I will become tired enough eventually and be able to sleep through the constant pain.