So the last couple of days have been pretty hard.  I actually forced myself out of bed after sleeping 15 hours.  I think this disease and the toll it takes on your body, really catches up with you after a while.  My joints hurt so bad it actually is painful to stand up and sit down, let alone sleep.  I'm not sure if it's from my Crohn's flaring or my Lupus as they both seem to be very active.  So nothing much has changed, still controlling my bowels by eating very, very little.

Went to bed at about 5 pm but couldn't sleep because of the pain, finally fell asleep around midnight only to be awoken by pain again.  I slept with a heating pad and even the pain pills didn't help.  Woke up early about 6 am and just got up and started working.  Better than lying around in pain.  Although at some point I will have to give in and go to bed as it takes a toll.  I am passing bowel today and that's good because I thought I was having a blockage again, the nausea yesterday, dizziness, pain and fatigue are all signs. 

So I am having problems again. My bowels come out pencil thick, which means my colon is inflammed and the pain is horrible.  Again, it's just trying to live through the excruciating pain.  It literally hurts to stand up right.  My husband is wondering whether I need to go to the hospital and I might, I just took another pain pill.  This is not fun and I'm  not having a good day.  Just another day with this Crohn's Disease.  The signs are obvious that I'm going to need to get on a big drug to deal with this inflammation.  I'm sure if you have this disease this seems familiar, if you don't, you probably wonder how I can talk so openly about my bowels.  I have no shame anymore, just pain.

Central Oregon GI care is less than impressive

So my doctor never called me back after my office visit.  So I called Friday to see what my Liver results where since he was so gun ho on having me have a surgical biopsy.  My numbers went from mid 80's to low 50's.  HUGE drop, since 40 is the top of a healthy liver.  If I'm getting better being off these drugs that are hard on me, why would I go through a surgical biopsy.  I believe a lot of the time what the doctors do is related to money.  I know it is cynical of me, but being as sick as I have been I no longer jump when they say I need to have something done.  I study what they want to do and think about what I will go through and whether the results are worth the trouble, otherwise they would have me running for tests all the time.  I don't  understand why it is so hard to get tests results either.  Especially blood tests, they used to send me the results and now I have to call and practically beg.  So I asked about the Cimzia and she had no idea what I was talking about.  Really?  Really?  So I explained the situation to her that my Insurance called me and said 1/2 a dose would take up my year allotment of funds available for drug coverage and I had applied for financial assistance.  She said she would get back to me, yet to hear from them and frankly don't expect to. 

The past few days have been much better, I could really get used to this.  I have been taking the opportunity to get some good exercise and a lot of work done.  My livelihood is directly related to the amount of work I do, so it's a good thing to feel good.  My only concern is the ability to eat and the pounds are dripping off about 30. When it really looks bad on me, then I will deal with it, right now I will just take the trade off.  Inability to eat but feeling human again.  I do wake up during the middle of the night from hunger pains, I can't imagine being someone without food on a regular basis.  It has to be truly hard.  Or being a parent not able to feed your children.  Being hungry hurts.  I better not go too far off on my rampage as I can get that way.  The waste in the world versus the hurting.  So today is better than the day before and it's sunny, cold and I will take it, life is good, today anyway.

If you ever get the chance to do a Crohn's-Colitis walk for the cure, I would love to hear from you.  Every year I hope I can go to Portland to join one and I'm always under the weather.  I think it's important to bring awareness to this disease and also to raise money in the hopes of someday finding a cure for this.  Their web site is CCFA.org.  If you are suffering from Crohn's Disease or actually any other disease at all, the best Chat/Forum I have found is Healingwell.com.  From there you can pick the chat you want to join, there are hundreds of thousands of people on there with crohn's disease all with many ideas and opinions.  It's nice sometimes just to know you are not alone in this ugly fight. 

I must have many people praying for me as today I feel somewhat human.  Now if you are a healthy person, you might feel like you have a little bug, that is my normal.  Only a half a pain pill so far and a couple of painful trips to the throne.  It is funny how you adjust your norm after having been so chronically sick.  The weight is dripping off of me a couple of pounds a day.  God gave me the extra weight for times like this, at least that's my excuse.  Really though, had I been a twig and lost almost 30 pounds in 5 months it would be devastating so I am thankful for the weight that the last drug put on me.  By the way Humira does put weight on you.  I think if you are taking it and not gaining weight, it might not be working, just my humble opinion.  It is bright, sunny and cold here.  I'm going to take my puppy for a walk, he behaves better and my spirits do to if I get out and walk him.  Hurting or not.  I am here fighting the good fight of this devastating disease, trying to spread the word.  So if you read my blog thank-you, share crohn's disease with everyone you know and eventually someday we will figure it out.  That is the hope I hang onto.