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.

My elderly mother gave me good advice.  She said I have to keep going to my appointments and hope that things will change so that they can treat my disease.  She said my family members deserve to have a healthy mother and wife.  In all reality she is right.  So I will go to my appointment next week and hope that something has changed. That in some miraculous way my numbers have somehow moved enough that I can get some treatment for this.  What does giving up on getting help prove to my loved ones, that when the going gets tough the tough give up.  I am one tough cookie sometimes and I will hold onto that!

I no longer can continue on my regular medications.  One of which I take specifically for pain management.  After two days of not taking this medication, I feel like an old person.  My joints are stiff (this could be as much from lupus as crohn's) and it hurts to move regularly.  I guess I really never realized how much I depend on this and how well it was working even considering how miserable I was feeling.  And so goes my life.  Should I go ahead and go to my appointment at the drug trial next week with my fingers crossed with the hopes and prayers that possibly my liver count has changed enough to participate.  Or should I live in reality and give it up.  Is it possible for a miracle to happen?  Do I believe in miracles?   I suppose I do, how else do you explain things that happen that really shouldn't in all reality.  Really, what can it hurt, god knows I it couldn't get any worse or could it? 

Just received a call from my Trials Drug nurse.  Bad news, am I surprised, ugh!  My liver is too sick to continue on the drug trial.  My heart sank.  I explained to her that I received a call from my GI's nurse and was told that I needed a liver biopsy and would I agree to it, well not having any further information I called back a week later and asked for a copy of my tests and was told in no uncertain terms, nothing was wrong and of course when I brought up being called for a biopsy they acted like I had made it up.  I am taking a medication that can be known to be hard on the liver and helps with my daily pain.  So I am going to ween myself off of this and hope and pray that when I go in on the 21st to have it redrawn that it will have changed enough to include me.  It has only decreased 6 points in two months and I need it to decrease 8 points in 9 days.  I know, I know but I have to try, what else have I got.  The first dose of this medication has to be taken by the 27th to keep me in this study.  Looks like I am going to lose my chance to receive help with this drug which leaves me with only two other choices, one being a last resort and the other being 20,000 dollars a month out of pocket.  Which means I may not have any other choices, a bag.  I don't know.

So about this Drug Trial I have joined.  It is a drug that has been used very regularly for Psoriasis.  My Trial doctor knows of patients on this drug for Psoriasis.  The funny thing is, the last "Big Gun" drug I was on caused Psoriasis.  It started around my neck, a lupus rash and the lupus rash across the nose and cheeks commonly called the Butterfly Rash.  It then spread into my scalp, ears and started to spread on my face.  I stopped the drug, steered clear of the sun and it's better but hasn't gone away.  So with some luck and PEOPLE I NEED LUCK it will clear up my psoriasis.  I have noticed my hair falling out again and it could be the psoriasis or the so called lupus.  But these are all small compared to the severe crohn's that I am suffering from.  So the drug company is trying to get it approved for use with Crohn's.  If it is approved, I guess the benefit is that there is another drug in the few choices available and insurance would now have to cover it as use for the big C.  It is my understanding this is the third phase and so I think it's promising.  There are some pretty severe side effects that I try not to think about.  One is a reversible syndrome ( a very scary reversible syndrome) the others are all par for the course in my eyes as I have been exposed to so much with all of these strong medications.  Kind of like when you hear on TV a commercial for a new drug and then you hear them list all the side effects which sound worse than what the drug was going to treat.  With that said, I am at a stalemate with my health, something has to be done as living with this on a daily basis has become a huge mountain to climb and so I am moving forward.