My daughter has been here visiting and I spent the early evening and night in bed after batteling pain all day, only to wake up to more pain that feels like childbirth.  I need a hysterectomy but have a GI that doesn't think it's safe for me to go through with my Crohn's activity.  Am I to suffer the rest of my life with this and Crohn's and Lupus.  I am up every hour or two in the restroom and just trying to get through life.  I have spent the last 13 years just trying to get through life and the thought of more of the same for the rest of my life isn't very appealing.  I eat right, juice, get plenty of rest, try to keep my stress level down.  My body isn't behaving very well!  My days with my family all together are precious and to have my health ruin them is devastating to me.  The rainbow is that they all understand~

Exhaustion is the word at the moment along with Pain.  My routine is pajamas early afternoon and asleep by 5.  Fighting pain all night till I give in and get up and fight the restroom all morning.  It's a very hard existence but exist you do.  Lately I spend a lot of time in bed, actually most of my day.

Asthma, Crohn's, Fibro, Fibroids, GERD, Lupus, Migraines and Psoriasis

This is my list of ailments. Instead of dealing with one, I happen to be blessed with many.  It's hard to tell some days which is the worse, I tend to feel sickly most days all day.  But I do fight it and fight it I will continue to do.

It was a long sleepless night of excruciating pain.  There's no sugar coating this.  I contemplated going to the Emergency Room more than a few times.  It feels like my left shoulder is out of it's socket.  However, I know this to be Lupus and there isn't much they can do for it other than up my pain medication and I already hate taking what I do.  It's really tough to have to endure this.  On top of that I have a blood clot in my eye that finally burst.  Lovely that it is, I am going with the though that it's from my migraines and not dangerous.I hope I am right.  I can't run to the doctor every time I have a sniffle, they would think I was crazier than I already am.  But honestly, staying upbeat and trying to deal with this is exhausting and my sense of humor is gone.

So my GI decided that I wasn't a good candidate for a badly needed Hysterectomy.  So instead I continue to endure more pain than I could ever imagine experiencing in my lifetime.  All I can do is lye in bed at times and cry and just pray that I will get through it.  My pain medication just does nothing during this time.  My only hope is possibly menopause will settle everything down and I'm sure this is just blind hope on my part.  My lupus has set back in and I still can't rollover to move to get out of bed in the morning, am bent over when trying to get up from a sitting position and just generally have very hurting joints.  But the best thing I can do is get up and pretend to the best of my ability that I can do it, until afternoon sets in and I give in to pajamas and bed by 5 pm.  I am thankful for a patient spouse who seems to understand that I can do nothing about not being able to keep my eyes open past this time and lets me sleep.  Other times the pain is so bad that I am unable to sleep so the fact that I pass out for twelve plus hours is generally just relief.  It is a sad way to see my life go by but I hold onto the hope that this will get better!

Too much pain to think straight.  Yesterday I couldn't physically rollover to get out of bed and today I am in so much pain I can't think straight.  Just sitting here waiting for pain medication to kick in while running back and forth to the restroom while I pray to god to get me through this.  It's wearing, draining and just will plain bring you down dealing with this day in and day out.  My day starts to end in the afternoon at 3, everyday.  I shower and fall asleep by 5.  It is the only relief I really have to look forward to.  I toss and turn all night but it's better than sitting and shaking my legs and physically trying to get through this horror while I am awake. My quality of life is low but I am thankful to be alive.  But I have to say there are days where it's hard to stay up beat.  Being chronically ill is a tough pill to swallow.  You lose your friends, family and your well being and all the while you keep your chin up and smile, not everyone is cut out for this type of life.

I cancelled my surgery because my Crohn's doctor told me that I was high risk and he couldn't believe my doctor would even consider it. He said that all the high labs were wrong that my Primary Doctor had done, that they were actually fine.  I log into my health chart for my Crohn's Doctor this morning and my labs are off the chart high (redone by him), liver/pancreas.  That the wrong CT with prep and dye done was wrong and I needed another one.  He said my Crohn's wasn't active but the pathology report said otherwise.  I am so frustrated, I don't know who to trust anymore.  I am going to go search out a second opinion for my surgery.  I HATE GOING TO THE DOCTOR'S with a passion.  Which is bad for someone with health problems I realize.  I would rather do a million other things, bad patient I guess.  My Rheumy told me that I had a different form of Lupus and my Crohn's Doctor thought a different form from Rheumy, Rheumy diagnosed Fibromyalgia and Crohn's Doctor said no way.  Really people!

Why is it when you can't stand up for yourself and you feel down and out and just plain sicker than a dog, people use that time to pick at you.  Constant picking instead of compassion and the stress involved in dealing with the picking is terrible.  I could not move to get out of bed this morning and during the middle of the night. Luckily my husband heard me and made sure I was okay and had me take a pain pill.  The morning before my dog heard me sobbing in the bathroom at the whee hours of the morning and woke him up to come help me.  This morning the pain in my abdomen went into my back and I literally couldn't move.  I had to push down hard on the spot and roll out of bed to then spend an horrendous amount of time in the restroom dying yet again.  Why when someone is dealing with this type of hell should anyone be but gracious to you.  The only people I can count on are the ones that live with me and see my anguish and reach out to help.  Everyone else has turned their backs.  I am saddened but some day I will be well and I hope I have the grace to turn to them and help.