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 ...

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 sleep through the head throbbing.  One side, always my right.  I feel dizzy, nauseated.  All the lovely classic symptoms.  My pancreas is acting up so I woke up with the knife pain and in tears. My joints are starting to feel fall weather.  I'm really a mess.  I do try and keep going and moving.  Even if it means just getting up and going back to bed. If someone offered me a million dollars or health, I would choose health.  Respect it, enjoy it and live it.  Being healthy isnt a given and should never be taken for granted. Especially if you are a family member of someone chronically ill!  Sieze the day.

I have spent most of the last week in bed with a migraine and lupus. It's hard to function when your head hurts and you have constant nasea.  I just want a break. My sleep has been from 3 in the afternoon till 6 in the morning.  It is the only thing that brings me relief.  I know migraines are common with Lupus.  They give me two migraine pills at a time, if I take them everyday, I will be at the pharmacy everyday. It makes no sense.  Inside, in bed during this nice September weather. Life is passing me by and I hate it.  I am missing out and there's not a damm thing I can do about it.  Complaining doesn't make it go away but I have to get it out. I don't get out, I don't get to do things, I am housebound with an illness.  Summer has came and went and I havn't participated.  Being chronically ill is hard.  If you get Cancer, you hopefully treat it and it goes away and life eventually resumes.  If you get a disease, it's a lifetime sentence that most people don't care to hear about or think about.  You are left dealing with it everyday and thinking about it everyday.  There are far too many of us stuck in the same situation.  I feel for the rest of my friends batteling an illness, life can be so hard and unfair and yet they smile and make the best of it!

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.

What a tough day and night and another hard morning.  I was up all night in and out of the restroom in serious pain.  If I thought there was something that could be done I would go into the doctor's.  Other than giving me more pain medication which I have no interest in, I'm not sure there is much I can do.  I just have to get through it, I guess.  I am not a happy camper as this struggle along with searing Lupus pain is just taking a toll on me.  I know others go through it and I will get through it too but it's damm hard.

What a horrible day yesterday, all night and this morning.  Non-stop Crohn's and pain that just won't let up.  I am exhausted and miserable and my Lupus is in a flare on top of all that.  Just want to crawl back into bed and hide but I have been there since yesterday afternoon and being in bed too long makes my Lupus worse.  I can't win.  It's going to be a long, long day.  I just pray for some relief soon.

I have some serious pain going on.  I can't get myself from my knees to standing on my own, I can't move in bed when I am sleeping and the pain is so great in my shoulder that I cannot life my coat.  It's time to see a doctor and see if anything can be done.  I cannot take it, nothing seems to be helping and I seem to be getting much worse instead of better.  I am 48 years old and cannot get in or out of the bathtub. I try to put a brave face on and make the best of it, but that's not making me better.  I am progressively getting worse and it's getting a bit scary.  On top of all this I still have Crohn's flaring.  It is not easy to be me at the moment and it's not getting any easier.  Something has got to change and soon.

Miserable in pain and nothing helps.  I can't move in bed to get comfortable, can't lift myself out of bed and just can't manage at the moment.  When you are in so much pain that's all you can think about.  I know it's my lupus flaring something awful but knowing what it is doesn't help.  I am in limbo waiting for insurance so I can go and try and see if there's anything that can be done.  My first stop would be acupuncture.  I am willing to try anything for some relief.  Pain is an enemy you don't want to deal with.

My liver is giving me real problems.  I have stabbing pain and it just generally hurts.  My eyes are yellow and my skin has a tinge.  This is all leftover from having taken Humira.  The drug being pushed like M&M's on TV.  Having liver damage is a serious issue.  I am eating the best I have in my whole life, juicing and getting sun even though it is hard with Lupus.  I realize there isn't much more I can do at this point.  It seemed I was getting better and now it's going backwards.  All I want to do is sleep and I realize this is a side effect from my liver.  I guess I should go in and have my labs checked sooner than later.

Slept ten hours and woke up to crying and screaming and holding in my abdomen as I tried to get through going to the restroom. Yes, it is that bad and it is exhausting and getting very, very old.  I barely ate anything yesterday hoping that it would help, doesn't seem to matter.  This is a hard existence living like this, it's tiring and physically draining.  I feel so bad for everyone else who has to go through this too. It just isn't right.  It shouldn't be like this.  If doctor's went through this just one week, they would ban together and create a cure as they wouldn't be able to stand the hell that is my life.

Another night of the same, up and down to the restroom.  That would be okay, well not so bad if it wasn't accompanied by so much pain.  I am trying to not get stressed, eat right and do all the right things for my health but it obviously isn't enough  Crohn's is crohn's and it is relentless at times.  Sometimes it's not about what you eat or do it's just about the disease that ravages through your body, getting its own way.  No one understands what it is like to live like this day in and day out without hope for a cure.  Just trying to control symptoms and make the most of what life has given you.

Very hard night with Crohn's. Went to bed seething in pain only to wake up at 2:00 to make the awful trips to the restroom.  That sad part is that their are many people like myself who suffer day in and day out with the same torture.  I would rather it was just me.  My story isn't unique.  I wished it was.  I feel like I have ran a marathon today and can barely function.  Probably will just end up back in bed soon.  I have become afraid to eat as food  is the enemy. If I can go without eating, my suffering eventually is less.  It is a hard way to live your life but that is my life.

Forced myself awake after sleeping 15 hours and now the Crohn's kicks in.  I think I would rather be back sleeping.  My lupus has somehow finally given me a break, I hate to say that as then it kicks back in.   It is just lovely Crohn's Disease today.  I didn't even eat much yesterday as I went to bed in the early afternoon.  I think fighting an illness day in and day out wears you out.  Mentally and physically and you just have to give into it.  So it may be back to bed for me.

Another day wracked with pain.  It amazes me how much pain a person can endure when they have to.  But I really think it wears on you having to deal with pain on a constant bases.  Imagine stubbing your toe and then imagine it never going away.  That's my life to the "T".  It never goes away, sometimes it webs and flows depending on what I have taken to treat the pain but it never leaves.  It's just a matter of how much I am able to withstand at any certain time.  Then add nausea on top of this, constant bowel problems, migraines, liver pain, psoriasis and well now you have my life!  Am I complaining? Damm right!

It is apparent that I need female surgery sooner than later.  It is causing havoc for me.  The bathroom floor was my bed for part of last night as a cried and tried to get through the pain.  It is just a matter of enduring it at times.  Still waiting to hear about insurance as it's suppose to be ready Feb 1, but I am not holding my breath.  In the meantime the pain is mean and ugly and I am suffering like a dog.

Now that I am done bawling I can think somewhat straight.  My pain patch had gone past the time needed and I was suffering and didn't realize why.   New pain patch and a pain pill to kick in till it starts working.  This was probably worse than waking to severe Crohn's and a prompt trip to the shower.  What a day so far.   It feels like someone is pulling on my shoulder and the pain just keeps shooting, this is thanks to my dear friend Lupus.  And people wonder why I speak out about the dangers of Humira, it's the small warning they say in the commercial and print where no one will see it.  If it happens to you, it will then be of importance.

Woke up to the deadly Crohn's pain, every single morning and all night long. On top of that my Lupus is really flaring.  I am sure this is one of my side effects that I am dealing with.  I cannot move to get comfortable in bed, I cannot sit up to get out of bed, my shoulders and neck feel like someone is sticking knives through me.  Thank god for my fentanyl patch as I know it would be much, much worse if that was even possible.  Now to figure out a natural way to treat this, that is and will always be my first approach after the Humira debacle.

Lupus Myositis

Some people with lupus develop myositis, an inflammation of the skeletal muscles that causes weakness and loss of strength. Lupus myositis often affects the muscles of your neck, pelvis, thighs, shoulders and upper arms; difficulty in climbing stairs and getting up from a chair are early symptoms. Later symptoms may include difficulty lifting objects onto a shelf, lifting your arm to comb or brush your hair, getting out of the bath, and even raising your head or turning over in bed.

I had hoped that my first blog of the New Year would be positive but I have to tell it like it is.  My Lupus is flaring and my joints hurt beyond hurting.  Stabbing like pains.  I fell trying to get in the bathtub.  Most of the night was spent dealing with Crohn's and the stabbing pain in my lower right abdomen.  This is a hard start to the year but I can't help but think it's got to get better.  I have to keep hoping or at least keep trying as giving up just isn't an option.  There's my optimistic thought for the day at least today.