It seems as if my health has come to a cross roads.  I have been bleeding and in pain from my Uterus for 7 weeks and not just bleeding but heavily.  Twice I have been told I needed a Hysterectomy and last time my GI denied it.  Said it was too risky.  I am at a point where I just don't have a choice.  My bowels have decided it's time to give me terrible trouble and I ended up on the bathroom floor and it looked like a crime scene. Bleeding heavily from my bowels. Now if I didn't have Crohn's Disease I suppose I would have been sure I was dying and I could be but I know it's coming from a fissure in my anus or a tumor.  I realize I type this as if it's just so everyday, believe me it's not.  But in the scheme of what I have been through in my life it's not surprising.  Now to figure out if it's one surgery, two or will it just be easy or hard. I understand where my Doctor doesn't want to just go in and give me a bag but at some point the bleeding is going to force the hand and I hope we get this figured out and done before that happens.  My head is throbbing and I suspect it's from Anemia which I go into today to find out?  It's doctors appointments everyday and I am a wimp and hate going.  I have really let this come to a head because I know there's little that can be done for me. I can't treat my crohn's due to Positive Tb, liver damage and blah blah blah and I couldn't treat the Hysterectomy because of the Crohns.  I realize it could be worse and I just keep that in mind as I go through the struggle of what is called my health.  I have great family support from my inner circle and a handful of friends who care and a dog that gives me kisses, what more could a girl ask for? Oh, I know, my Health.

Lately my day ends around 4 in the afteroon and I go to bed and go to sleep.  Sleep is hard but the
fatigue leaves with nothing but to lay my head down and let go.  If I sleep it means I am not in pain.
I realize the world is going by as I sleep through the days, but there isn't much I can do about it.  I just awoke from fourteen hours of sleep and the only reason I woke was the Crohns pain was too much and I gave in to get up and run to the restroom.  I am stiff and unable to move much in the morning so I immediately take a pain pill. I still need to get that cane.  My dog always watches me with a funny tilt of his head in the morning, probably wondering why I am struggling to walk.  I
realize my life is deteriorating. My husband mentioned that if I am in this shape before fifty he wonders what old age is going to bring me.  I have thought of this too.

Been a whille, wished I could say I am healed or feeling much better but unfortunatelly, much of the same.  I have been having blockages for a month straight that put me on the bathroom floor. About three weeks ago I passed out in the bathroom hitting my head.  Last night I was peeled off the bathroom floor yet again.  It starts out as not having a bowel movement and this goes on for a couple of days and then it hits me.  Both ends at once and it's miserable.  The older I am getting the worse it is to go through this.  Thank goodness for my nausea and pain medication.  I have dealt with this on and off for many years but it seems to be wore and steady now.  When to go to the doctor for this?  Getting there.

I feel like CRAP!  Just plain feel bad.  Eating makes it so much worse too. I am holed up in my room in bed as always.  I don't want to feel bad, I want to wake up feeling great.  I realize this is too much to ask but I won't quit wanting it for my life.  Having 3 Auto Immune Diseases doesn't leave me much room for having many good days.  It's always a measure of how bad it really is and how much can I put up with. My days are much of the same and I have about 5 hours where I shower, watch TV and do what I can, the other time is spent in bed and or sleeping if I am lucky.  I am chronically ill, this I realize. It's just hard.

It is becoming very hard for me.  Went out of town I am screaminig and crying in the hotel bathroom, sicker than a dog.  Caught something on the plane that feels like bronchitus, racking cough with green mucous, fever and I feel really bad.  Lupus kept be from being able to get myself in and out without difficulty.  The worse is going back to the hotel by 4 in the afternoon to go to bed because I just can't do it.  This doesn't feel like living and I feel very dependent on my poor husband who generally most of the time tries to make the best of it.

After three days of pure hell I am up and able to move around the house again.  This morning was bad but I just scream into a towel and get through it.  If it wasn't for being able to take pain medicaton I don't know what I would do. The best thing I can do for myself is to stop eating and try and get this to settle down.  I'm always amazed at the amount of pain I am able to survive through  Yesterday was another contemplation to go to the ER but I know there isn't much they can do for me other than give me more pain medication and I'm  not good about taking what I have.  Just was at the Doctors Monday, really not much he can do either.  I did discuss the hope of stem cell in the future but he said that was a slim chance that it would be anytime soon.  Still hopeful for others. He also brought up my positive TB test but what the hell?  I can't take the treatment so I pretend it't not there.  It's about surviving baby!

Today it hurts to stand up, sit down and no walking around for sure.  It is just too painful to move.  I know it's a combination of Crohn's, Lupus, Fibro and the need for a Hysterectomy that I can't have.  I am landing in bed early afternoon and just trying my best to get through it.  As lonesome as it can be being chronically ill it's nice to have the internet.  It's much easier to manage when you are able to keep your mind occupied when it's available.  A person can only watch so much TV.  If you are stuck inside reach out to someone, phone, internet, email and if you aren't stuck inside still reach out to those that are.

The pain at the moment is staggerng.  I have uteran issues that were unable to be resolved with surgery due to my status of Crohn's Disease. So I continue to suffer.  At the moment it is a bit more than I can even imagine. I'm sure a pain pill will help but won't relieve this issue.  My poor hubby went to bed helping me out of bed and during the middle of the night.  It happens to leave me unable to move at times.  It seems pathetic that there are no cures for my Disease Crohns, Lupus and Fibro but I am hopeful it is in the near future or very least next generation.   I am happy to wake up each day, no matter how staggering the pain is, have some coffee and talk with my family and put my bravest face on that I can muster to make it through yet another day.  I do have to admit my favorite part of the day is when it's over and I can go back to sleep to escape my torture which at the moment is my life. We have to remember that my story isn't all that unique there are millions suffering with chronic illnesses often left to their own demise and probably a bit isolated as it's easy to forget about us.

Somedays I don't get out of bed, most days I get out of bed but return early afternoon.  I now have a phone in my room and my husbands as sometimes I can't move my body to sit up and get out by myself.  Early in the day I seem to hit a wall.  I have not stayed up to watch a movie in the past year.  I am asleep for the evening by 5pm.  I wished there was more I could do, I try and walk the dog when I can, today it was so painful on my feet, ankles and knees that I just couldn't do it.  I eat as well as to be expected and juice when my disease allows it.   This is the life of someone batteling three Auto Immune Diseases.  It takes a toll on your life no matter how hard you fight it.  I probably wouldn't even get up and get out of bed if it wasn't for the pain medication that gives me a break to be a bit human. I feel isolated and have minimal contact.  People quit calling when they know that nothing gets better and you have nothing to offer other than conversation.  It has been a hard reality being chronically ill, but it makes me understand better what others go through.

Eary afternoon I am so exhausted I crawl back into bed to sleep, even though I spend all day in bed.  My fear that is repeated night after night is waking to pain that leaves me unable to move.  I keep pain medication and a drink on my stand so I can reach over and take it, but then I have to lye there waiting for it to kick in so I am able to move and even then it's miserable.  With three Auto Immune Diseases it's hard to know which one is causing this. I suspect my Crohns as it's opposite my lower right abdomen.  If I go to the doctors it will be another Colonoscopy. I fear these procedures as they do them like blood tests on patients with Crohns.  Do them enough and you are likely to be one of the statistics for one reason or another.  I have been cautioned by relatives of Crohn's patients no longer with us who have gone through this and the one thing they say is don't let them over do this testing.  Not only that, but let's be honest it's a miserable prep.  I am not suggesting that others forgo this testing, I'm just saying for myself that enough is enough.  We know I have Crohn's, fissures and extreme inflammation and since there's no cure what good is the test again, again and yet again.  I realize it's a Cancer Screening and that I get, but nothing changes in six months to a year that drastically.  I honestly think it's a money maker!

Six days without a bowel movement and I knew I was in trouble.  Woke during the middle of the night vomiting and then this morning to horrendous pain.  Holding the wall and crying just to get through it.  Damm Crohn's Disease does a real  number on a person.  I went to bed yesterday afternoon feeling bad and could tell something was brewing.  On top of that I have very bad joint pain.  So much so that I cannot move in bed without taking a pain pill and waiting for it to kick in so I can adjust from by back to my side.  It's a real problem and honestly a bit scary.  Winter has set in here and it's set into my joints too.  I cannot live in a cold climate.  While I can't run out and move somewhere instantly it's clear that I need to find a spot to Winter in.  Winning the lottery would help too!

I really tried yesterday, but I broke down and took a Cymbalta and went to bed at 2:00 pm and slept 15 hours and then forced myself out of bed.  I feel a bit more human today, but my head is still off.  I am alive but not living and haven't been for a very long, long time.  It's a very sad existence to watch the world go forward without you.  I spend every single day in bed all night and all day.  I get up and shower only to go back to bed.  If I'm lucky I venture to the grocery store with my husband and a big trip might be Costco once a month.  This is not living and seems to be getting worse instead of better.  The last ten years have been so hard and no one seems to understand except for my immediate family who sees me and my existance.  Once in a while I get a break and it's like winning the lottery.  I never expected to be chronically ill and never understood others who were, until I have lived through it myself.  I realize there's no hope for me as even if I could get one disease under control, I have two others that would always be there.  It's just a bit much most days.  I deeply love my hubby, daughter and son and they are the reason I keep getting up showering everyday trying to pretend everything is normal.

Oh Boy am I sick.  It hurts to have my head upright and my eyes open.  And then there's the nausea.  This is what it's like to try and go off Cymbalta.  It's obvious that my healthcare providers don't care.  Even after a return phone call concerning my Cymbalta.  I told the person that she has no idea what it's like to go without this medication and it's all because of her.  She didn't do her job and here I sit suffering.  Why do people get into the healthcare business if they really don't give a shit about their patients.  She acts all nice and proper but deep down she's not as good of a person as she pretends to be.  I live in a small town where everyone knows each other and I have ran into this person and she has obviously been talkin about me in front of my face.  Question is, do I turn her into HIPAA.  I do deserve some privacy, it's bad enough she can't do her job.  She has no business telling others about my personal life.  If I choose to share it, then it's on me.  But healthcare workers should do their job and keep their mouth shut. Some people may think I need to be more positive, well I need to speak the truth.  This person shouldn't be able to do this to another.  If her job includes getting medications for patients, then she should know what the effects are when she makes mistakes.  I understand now why there are numerous lawsuits against the drug maker for not adequately explaining the consequences of having to get off this medication.  Yet there are many medications like this used to treat Fibromyalgia.

Six weeks ago I called my doctor to reorder a medication I get from the drug manufacturer because my insurance doesn't cover it and its close to 10K a year.  I have been taking it for a very long time.  I then called her back 3 weeks later and she never ordered it and of course at that time I only had a week left of it.  So I have been only taking it every few days.  Problem is it makes you feel horrible!  Not having gives you head spins, nausea, pain etc. I called yesterday and basically gave it to her, explaining that it's not like taking an aspirin and missing a day.  She called back and said they are red flagging my application and will try and process asap. Well that does me no good.  I am determined to stop taking this medication whether it helps or not.  It is prescribed for fibromyalgia and other joint pain problems but I can't live like this. This is a regular occurance for her and she just doesn't care. There are numerous websites offering support along with lawsuits concerning this drug and how horrible it is to get off of it.  It's not a narcotic.  It suppresses the brain signal in your brain to not feel pain, is my best description.  So I am on an every 3 day take a pill and only have four left.  If it gets to bad I will go to the ER or my doctor. I have been in misery and am determined to never experience it again.  If I get the medication I am going to continue my weaning and eventually I will get off of it or order a smaller milligram till my body no longer needs it.  I am going to try some other type of therapies for my pain in my joints.  I started taking this drug at a point where I was unable to leave the house to walk down the block due to horrible pain.  I just am keeping my fingers crossed that this doesn't happen again.   Where are the ethics of people in these positions.  They tout her as such a nice person, well a nice person would do their job and not put a persons health at risk.  One of the side effects of going off this medication are siezures, it's a serious game she's playing and I let her know that yesterday. She never once acknowledge that she had done anything wrong, suprising huh?

This is the second night in a row where I have been up with severe pain.  I awoke and couldn't move due to the pain.  Even reaching over for a pain pill made me cry.  Finally, after two and waiting an hour I was able to get out of bed.  But it's the middle of the night and I am up dealing with this.  I am so thankful my two children are grown and I don't have to get up and go to a job.  My only responsibilty is myself.  I do feel bad for my husband.  While we were away it was aparent that I am not up to going anywhere.  The last day we spent in the hotel and each evening, well after 5, I hit the hotel room bed and was asleep.  People keep talking about finding the good in your quest, there honestly is nothing good about being this sick. Period.  God did not give this to me, it is not inspiring and I would change it if I could!

No amount of pain medication is going to help me today.  My uterus and crohn's are doing me in.  Literally feel like a knife being twisted and turned and no let up. I respect the fact that my GI didn't think I would be able to go through a hysterectomy but the thought of more years of this after enduring it for so long is bleak.  Pain just sucks all thought from your mind, love from your being and strength from your soul.  If I didn't think what my doctor was saying was true, I would demand they do more to help me.  My only hope is early menopause and it's not looking likely.  My life has been much of the same and just continues to be a repeat of one day to the next. The less you are able to be there for others, the more lonely it becomes. People realize you have nothing to offer them and they eventually leave your life.  While it's very sad for myself, it has taught me a great lesson about life and if all I can do is offer words of encouragement for my struggling friends, then that is what I will do as it reminds me that I am not completely alone.

I have to say, I often feel defeated from being sickly so much and in such dire pain.  Friday night I fell asleep early afternoon and woke up to horrendous Crohn's in the evening.  I prayed for god to help me or take me as either one would have been fine at the moment.  I thought about the ER but was in too much pain to make it happen.  My family was mostly sleeping and so I was on the bathroom floor crying and shaking and trying to live through what we call Crohn's Disease.  Saturday was hard and I went to bed again in the early afternoon and slept through the pain till the morning, to only start over.  It sucks the energy from your life and you feel just plain helpless.  This morning I feel weak and "done in" for lack of a better phrase.  To have bowels and intestines that don't like it when you eat and you have to endure the food going through your system during these passages of it being mad is like jumping into a pool of hell!

Two weeks of a migraine.  Growth back in my adenoid again and I am passing it every few days, the surgery to have it removed was too brutal to go through it again.  However, I do realize I should have it checked to make sure it's not a tumor, it was benign last time.  I have a lump in my esophogus that hurts when I swallow and is causing spasms when I breath.  Pain in my middle upper back from my pancreas flaring. Crohn's doing it's evil deed today.  My joints hurt to get up, sit down, bend from my lovely Lupus.  This is all that is wrong with me.  The fatigue from all of this renders me useless.  I just feel like CRAP!  The sun is shining it's a beautiful day and here I sit in bed.  But here comes my baby puppy and my hubby is staining the deck and there are reasons to keep moving forward in the hopes of a healthy day in which I will be able to get out and do something fun.  It will come!

Fell asleep at 5pm yesterday afternoon batteling nausea and pain from a non stop migraine.  Awoke at 3am to more of the same but am thankful for the sleep.  How do migraines go on for days at a time.  This is day 10 and I feel like crap. On top of that my Pancreas is flaring and the pain, well you can imagine.  Just feel like crum everyday and everyday it doesn't change.  I forced myself to ride in the car into town and back and I couldn't wait to get back home.  I am once again, sick of being sick. My sense of humor is gone and I need a break from this, if even for a short time. What am I doing wrong that I am sick so damm much.  Is there something I could change to make it better?  I drastically changed my eating habits to try and help keep my Crohn's symptoms at bay. I juice everyday. Is there something that I am missing that could change this.  It's not fair that so many people walk around healthy and fine and others of us are holed up sick all the time.  Many people say, they are glad they got their illness it changed them and blah blah blah.  I would never feel that way, if I had a choice I would choose health, 100% for sure. Some say have a positive attitude, well screw that, you have a positive attitude.  I am miserable and a positive attitiude doesnt coinside with pain and misery.

Living daily with Crohns Disease: Day 10 of a Migraine from Lupus. My medication giv...

Living daily with Crohns Disease: Day 10 of a Migraine from Lupus. My medication giv...: Day 10 of a Migraine from Lupus. My medication gives me short relief but doesn't last and puts me to sleep.  Last night I was unable to ...