The point of my blogging isn't to expect anyone to feel sorry for me or make you yourself feel bad.  I am blogging and being frankly honest.  Many people who are crohnically ill aren't this honest about how horrible it really is or how horrible they really feel.  If you ask most people how they feel they will put a smile on their face and say fine.  I am not going to pretend that my life is easy by any means.  My life has been put on hold because of my illness and my families too.  If you read my blog, the very least you should take from it is that you yourself, if you are feeling well, should grab life by the horns.  Go and do as much as possible, smile and be happy.  Because if you don't, there may come a time where you will really have a reason to feel unhappy and you will be sorry that you wasted one precious healthy day doing anything but just that, being happy!  If anything you should be forever grateful that you don't have to deal with the same problems.  And maybe, just maybe if you meet someone who is dealing with something, they may look okay on the outside but you will have a better understanding that things may not be as easy as they seem. Having compassion for others should make you feel better.

My lupus and crohns are both acting up today.  I look like I have been severally burned and cannot put a bra on.  It is miserable.  So, I am in pajamas today and won't leave the house.  I am going to have delve into Lupus and  figure out what I am going to need to treat it.  The first round of options I cannot take are aspirin therapies.  Second round is Prednisone and I refuse to take that.  The third would be the drugs to take to lower your immune system and I have taken many without help.  One being the Methotrexate that is being talked about as the Pediatric Cancer drug that is unavailable.  It was unavailable when I was taking a few years back. It was super cheap but very hard to find.  The expensive drugs are never hard to find. Hmmm.  I do have some topicals but they do change your skin consistency.  So I will do more research. 

Spent all day yesterday at the Clinic.  Basically did every test that I had done before when I tried to join the Trial.  I am having misgivings.  Not sure exactly why.  But after a full day of everything I need to take back a bowel sample and then will find out if I can join this first phase Trial.  If so, then I would have an appointment set for an infusion or injection of the drug or a placebo.  I won't know which.  Then at week 3, 6 and 8 I would have more tests to go and have done and then if I get relief from either the Placebo or Drug I can then go through the whole process again to see if I qualify for the Maintenance Trial.  At which time I would receive the placebo or drug depending on what was originally given me.   I have misgivings.  This is a lot to go through to may or may not feel better.  Yesterday was over the top too much for me.  I came home and went to bed and got up at 10 a.m.  Today I have been a pill popping maniac just to get through the pain. I had to go do something for work and could barely stand up.  The doctor that saw me was kind and gentle and felt bad that I was so miserable.  She also noticed my Lupus was flaring awful, I had that wonderful butterfly rash across my face and broken out in many other areas.  If I had the money I would just go buy Cimzia to try and get some instant relief.  But since I don't and can't I will continue on this route for the hope of some possible free medication.   I really felt like a guinea pig, being poked and prodded and your Trial Nurse doesn't really want to connect with you, just go through the motions.  Even though he really was kind and efficient.  I hate to complain as I am lucky to have this close by to go and try but I still have misgivings.  I suppose if I didn't something would be wrong. 

Hard day yesterday, basically had to stay drugged in order to function.  Sleep was horrible and to get out of bed this morning I had to hold my lower right abdominal area to walk.  I am so ready for some help with this disease.  I am not functioning well at all.  The boys are off this morning to look at motorcycles and normally I would go along, I really don't even care today.  I will be lucky to get some work done.  Might even go to bed.  This is no way to live and I refuse to give in. I will live today again functioning with pain pills and work as hard as I can and hope that tomorrow is a better day.  If I won the lottery I would go have a hysterectomy tomorrow as I know the growths are pushing on my colon and I would pay for Cimzia to treat my Crohns.  But I feel lucky to be able to go into the Drug Trial as it may help and it's free!

So after talking to my GI Dr Bochner, he is winning points with me.  Just taking the time to call me without having to ask means a lot.  Also, have a great Trials Drug Nurse Aaron Pratt.  We have decided to go ahead and go on the Trial.  So back I go Monday to rerun everything, tests paperwork.  I will need to take back another stool sample on Wednesday and then with fingers crossed an infusion the following week.  The first Infusion may be a placebo or Stelara, I won't know.  Then after about four to six weeks I will join another Trial for a regular infusion of the Drug.  This has been a long haul. It was last February that I had to stop Humira due to a reaction of Lupus.  Since then, I have been on a soft food diet and just meandering through each day, taking pain pills as needed but sparingly and being miserable along the way.  Just need a break from this if at all possible.   I saw my GP yesterday and he thought my liver tests weren't all that bad.  My ALT was 59 which is still high but low and my AST was 29 which is fine. So with that news in hand I will move forward with hope of better days ahead.

Had my liver labs done again yesterday, same as last time, still high.  My GI actually called me, I am so impressed.  He suggested Prednisone.  I just can't do it, I feel like I'm trading one set of bad symptoms for another.  He wants me to take for two weeks, said it might help my liver?  Never heard of that.   Wants the tests done again in two weeks.  Suggested again a liver biopsy, I am just not down to go through that.  I go to the doctor today to discuss my Cymbalta.  Hard night, slept with a heating pad, if you call it sleep.  Awake on and off all night and tossing and turning trying to get comfy.  I'm not sure what I am going to do.  Still taking all my supplements. 

Yesterday I decided to start taking supplements.  I figure as bad as I feel, it couldn't get worse.  This is really at my husbands insistence, it's hard for him to watch me suffer.  Back on my Kyo-Dophilus, a non dairy probiotic.  I think everyone with bowel disease should take some form of this.  Fish Oil with Omega 3, Liver Health Complex with Milk thistle and 5 Loxin.  I feel better this morning, I haven't taken a pain pill yet, now this could just be coincidental but since it doesn't hurt me to take these supplements and my liver is too sick to take conventional medication I will continue this route and see if I get significant results.  At this point, I am willing to try almost anything.