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 ...