I am in the middle of a Lupus flare and my Crohn's is aways constant.  Yesterday I went to bed at 3 in the afternoon and slept 19 hours.  Today my Lupus joint pain is so bad I could barely lift myself out of the bathtub.  The joint pain grabs you and grips and just won't let go.  It's really quite miserable.  That and along with my Crohn's having me grab the walls just to get through the damming pain is just taking a toll on me.  I know I need to stay out of the sun and try and sleep this off, but it doesn't go away quickly and it's hard to sleep when your shoulders and hips hurt so bad you can't lye still.  It makes no sense to me that something can't be done.  Last week my chest pains were so bad I thought I was having a heart attack, Lupus seems to affect many parts of your body.  Right now my joints are hurting directly where my red rash flares are showing and they seem to be growing instead of getting better.  And that is my rant for the day.  I can't call my daughter as I don't want to cry when I talk to her on the phone, so I am just hibernating and waiting this all out.  It can't last forever, there has to be some reprieve soon even if it's not soon enough.

Having Lupus is just as bad as Crohn's.  My joints are all red, I have the lupus rash in many places on my body and it literally hurts to stand up and sit down.  My finger tips are numb and tingly, this is a new symptom and I have intermittent chest pains, common in Lupus but I do need to discuss with my doctor.  My hips hurt to sit or lye down, hence my problems with sleeping. I can kind of keep my crohn's at bay by not eating, not an easy way to live.  But the joint pains are really debilitating.  I'm not talking about a little pain here or there it's as if you have ran a marathon every single day.  I am too young to live like this, but what can I do?  I finally got up at 5 a.m. and decided I couldn't lye in pain any longer and just started my day early but it is 10 a.m. and I am back in bed.  I am thankful for a good view from my windows and t.v. to keep my mind occupied and maybe off my pain.  My pain patches are working as I am feeling a little relief now and then but it's very short lived but better than before.  Small glimmers of hope,

The last couple of days have been pure hell for me.  When you have to brace yourself while in the bathroom just to get through the pain and even then you pray to god to help you get through it, you know something is terribly wrong.  My lupus has been flaring at the same time.  My joints turned bright red and it literally hurt to sit down or stand up.  Along with dealing with devastating migraines it has all been a bit much.  Mostly I have been in bed just trying to get through the days.  I was up all night with Crohn's and just didn't sleep but today I feel better than I have in about a week, so I will take it.  I realize that I will be ready for bed at noon but hey that's okay.  I am learning that naps may be a part of my life for a while.  I am learning how to use these pain patches, you would think it's pretty simple but really it's not.  I was having chest pains and I'm pretty sure it was from taking scorching hot baths that cause the medication to release in a bunch.  Not only is that hard on your system but you end up without the medication needed.  Also, my last patch got a little wet by being sat down on the counter and water can ruin the patch.  There are certain areas that are better than others to place the patch and I am playing with this each time I put on a new one.

It has been so long since I have blogged, almost forgot how to do it.  Just when I was at the very end of my rope my doctor has stepped up to the plate to help me.  I am on a new pain medication, a patch.  This is very new to me, I am about a week out in taking this.  While I find great relief from my pain and fatigue while on this patch my migraines seemed to have kicked in full force.  The weather here has gone from 70 degrees one day to snowing the next and I am hoping this is the reason for the increase in my migraines.  They literally put me to bed eyes closed waiting for it to pass or for myself to fall asleep through the hell.  On the upper note, seeing some relief after literally living in my bed leaves me with a bit of hope. Just about when I thought all hope was lost.

I have been under the weather along with the usual Lupus and Crohn's now for almost two months.  I think I finally figured out that it's my liver that is making so ill.  I thought it was getting better and I started taking large amounts of herbs and vitamins to try and help my illnesses. Well what a mistake that turned out to be.  My eyes are yellow, I generally feel malice, head hurts, nauseated and I feel like I just want to crawl into bed.  When your liver is sick there's not much you can do about it.  I should have been smarter about the whole thing.  I thought maybe my liver was better but it was only settled down because I wasn't taking anything.  I cannot live like this, it's like having the bad flu twenty four hours a day seven days a week.

It has been a while since I have written about my disease and struggles.  I am suffering from a debilitating migraine that just won't let up.  As I type I am sitting here with all the shades pulled and sunglasses on trying to overcome the pain and nausea.  Unfortunately, I can't just go to bed, if I could I would.  This morning was an excruciating experience of Crohn's that left me depleted from dealing with the pain.  It really isn't an easy life or existence most of the time.  I really envy those who are able to get this disease into remission.  On top of all this my Lupus has started to flare again and it hurts to sit down in a chair.  If I wasn't living this myself it would almost be unbelievable but there are so many of us out there.  The good news is that we are a strong group that support each other.  We face hard daily challenges but we are always there with a kind word for each other.  If it wasn't for my Crohnie friends this struggle would be more unbearable than it already is, people and faced I have never met face to face but yet their kindness and outreach means more to me than anything.  Thank you,

 Low Dose Naltrexone (LDN) when I asked my GI about it he acted like I was speaking another language.  I explained that it was an alternative or non mainstream drug that was being used to treat Crohn's Disease, this was about a year ago.  Understand that my GI was a teacher, so he comes very qualified.  He not only blew me off but wouldn't even research it.  Now there are groups of sufferers who have banned together to find doctors who will prescribe the drug or alternatively find ways to get the drug from legal sources.   Many are compounding their own drug and finding relief from this.  It is a drug that was or is used to treat opioid addiction.  In very small doses it helps Crohn's Disease or so many people say.  If my liver was healthy enough to handle it, I would so give it a try.  Also, my understanding of it is that it also cannot be tolerated or taken with pain medications.  When you are desperately hurting it is hard to go off the pain medications to go on this new medication, however when my liver get's well enough I will.  Even if it means going to an alternative way to treat my pain, I'm sure you get my drift.  There was a Drug Trial done on this medication and it had pretty good success but I suppose because it is not a big money maker and probably are no kick backs being given it will probably never see the day of being used to treat symptoms of Crohn's Disease.