My day started with 6 bowel movements in less than 2 hours.  I could let that make the mark on my day but try hard to choose not to.  So I kept moving, kept talking, kept working and now I'm exhausted.  But today it didn't win, I just kept going to the restroom and trying to ignore it.  Now, I can't do that many days, but the days that I can, I do and always will as long as I can.  For this small simple way of getting through it today I am very grateful.  I just kept moving and going till I couldn't move anymore.  So now I am off to bed, sleep or no sleep I am going to rest as tomorrow is another day in Crohn's paradise.

And so it goes, my gut hurts so bad today, I can't even fathom eating.  Doesn't mean I'm not hungry but I tried to eat a boiled egg and couldn't finish it, hurts too much.  Doesn't make sense I realize, but it is how it goes.  I never understood why I always so pictures of skinny (deathly) skinny people with Crohn's disease.  It seemed the norm.  Now Crohn's patients appear chubby and very bloated.  It's all the new medications that keep your immune system suppressed or of course steroids can do the same for you too.  When your not on medications for whatever reason, the weight just slips off.   Not to mention the steady bowels.  So if you see super skinny people who don't look healthy, don't be so quick to judge them.  It may be out of their control.  Just like being overweight it can suck to be way underweight too, not to mention malnourished.

When I was diagnosed with Crohn's I didn't even know what it was.  I had never heard of the Disease and left the doctors office, used the pay phone (funny) pay phone and called my husband and told him.  I was crying, didn't even have a clue as to how bad it really was and was to become.  Now, my groomers father had Crohns, my sales clerk at the stores Mother has Crohn's, my daughters friends Niece has Crohns, my daughters Friend has Crohns, my Neighbor across the street Son has Crohn's and so the list goes.  So yesterday is the same as today, probably worse as my lupus turned my face red and my joints feel like I have the flu.  My point is this, I feel this crummy think about the little Niece, the young Friend of my Daughters, the elderly Mother of the sales clerk and so the list goes, they all feel crummy too.  If I can randomly come up with a handful without thinking then I know that everyone else can too and we need to figure out a cure for this disease, eradicate it in it's steps.  Stop the generations coming forward from having to go through the pain and suffering.  So tell people you know that you know someone with Crohn's the more we talk about it, the more likely we are to cure it.

My Crohn's, Lupus and Psoriasis is flaring something terrible.  I am going to talk about Crohn's and how I get through bowel movements that on a scale of 1-10 are a 20.  I cry, pray to god to help me through it, shake, pound my fists and the most effective is use my lamoz breathing to take the focus on the excruciating pain and back to concentrating on my breaths to help me.  It is a very tough existence to have to live through this.  Many times my hubby of 25 plus years will come in and give me a pain pill, yes while I am on the toilet.  Just because he hates to see me suffering and hopes the pill will kick in and help me through it.  This is an exhausting existence and I am not the one and only person with Crohn's Disease going through this.  God help us all.

I spoke with my mother on Facebook video chat today.  I haven't seen her in 3 YEARS!  I was so overcome with emotion, my face turned red from crying.  I had no idea that my computer had this ability.  It took my 17 year old nieces request for me to even realize I could do this and my sons help to install this technology for me.  What a nice, nice gift.  For a while I forgot about my sickness and all the ills of my life and visited with my family. 

Woke up this morning after finally falling asleep at 1:00 a.m.  Of course pain woke me up and it just went downhill quickly.  The pain was excruciating and so were my bowel movements.  But a couple of pain pills later and I was actually able to leave the house and go somewhere today.  With the way my day started I didn't expect that at all.  Understand that I was unable to eat till I got home and then just some yogurt and a piece of toast and I can feel the pain coming on, but really I was able to get out and do something and that is reason to celebrate!

My newest lovely symptom is nausea, particularly if I eat anything of substance.  Now, I happen to be a person who despises vomiting.  For me it is the worse possible thing to happen and here I now have to deal with it.  I had always read that it was a symptom associated with Crohn's Disease but never expected to have to deal with it along with everything else.  Well, I guess I'm special because I now have to deal with that too .  In all seriousness though, the pain and trying to sleep through it is getting harder and harder.  I am in and out of bed all day and still feeling pissed off about having to deal with all of this. 

Some people may wonder what my point is in writing this blog and complaining as it may seem.  But honestly, I have come across so many people in the same situation as I myself find my health.  A neighbor has a grown child with an open fistula draining.  They think it's no big deal because this child doesn't complain.  Let me tell you, I'm sure there's a lot of pain going on and it's being well hidden as I myself tried to do for many, many years.  People couldn't and still have a hard time believing I am as sick as I am, because I put a smile on my face and don't have the words CROHNS taped across my head.  There are many young people dealing with this disease too.  My daughter actually has a couple of friends suffering.  One very young.  One thing I can be thankful for is that it didn't hit me till my kids were teenagers.  I was able to enjoy their young years with them.  I wished I had worked less and enjoyed the time more.  Even though I think I did more than most, now looking back that money was not worth the time I gave up.  Especially healthy time.  I now know that being healthy is the most important thing in the world. 

This disease is winning, winning, winning today.  I hate when I have to give in like this.  The pain won't go away and the trips are non stop to the bathroom.  On top of all that, I feel pissy.  Usually I don't let myself get like this, but I am just pissed off.  I'm sure there are times when this is normal with this disease.  But I don't want to direct it at others and at the time being I can think of one person close to me that has made me madder than hell.  Wow, I wonder if I should say what's really on my mind. 

I literally tossed and turned 4 hours last night and that was it for rest.  The pain is becoming unbearable again.  Yikes, what to do.  I put my PJ's on at 4 in the afternoon and am just trying to function through the rest of the day.  I foolishly made plans to go visit my daughter and help her move and I should have known better.  Leaving the house just isn't an option for me at this time of my life.  UGH!  I should have known something was wrong as the lupus was flaring horribly too! 

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.