The Latest Battle in My War

Hello All: I cannot thank you enough if you have bravely looked at my video.  I realize it sort of craps out at the end.  It was my fourth or fifth attempt and I like it in general.  I had planned to go finish it and never did, so I thought I would just post it and keep on going.  After all, I am not getting graded or making any money off of this.  I am my own worst critic!  I have been lying in bed the last two nights, too scared to even look at it:)

Yeah, it ain’t perfect but neither am I…. far from!

So, the latest battle in the Immune System Wars has been raging for several months now and I keep hoping I will win and but I seem to just be losing ground.  It is all I can do to live life, one day at a time.  If I think very far past that, I freak out.

Two of my chronic conditions have been in full swing: my mixed connective tissue disease (which I call Lupus with Friends) has been going whacko.  The last time I saw the rheumatologist he put me  back on steroids and stopped a medication I had been taking over the past year.   I friggin hate steroids. I don’t mean I just hate the bloat or whatever; I hate the fact that even small amounts turn me into a mental basket case.  I took a medrol dose pak, many of you will be oh-so-familiar with those- and then began a course of 10 mg. a day.  After treating myself for six weeks I was basically suicidal.  So, I quit and prayed I could hold my own.  Guess what?  I couldn’t.  My joints and my interstitial cystitis came roaring  back to town.  So, back I have gone.  I am trying to break the tiny 10mg pills in half.  We will see if that helps and if I can tolerate them.  Sometimes I think there has to be an end to all of this.  It is just too much.  I have never felt this so much as I have in the last couple of months.

The other issue that has come up again is my chronic pancreatitis.  I have a birth defect that is slowly killing my pancreas and causing me incredible pain.  At this point I can no longer digest food other than protein shakes and mushy oatmeal.  I am often nauseated.

I decided I had had enough of it all and went to see the surgeon who is the best in Austin at removing the pancreas (he works in oncology).  He told me, “I don’t want to kill you.”   So.  Basically, because I have a primary immune disease and an autoimmune disease and the fact that I almost croaked from my gastric bypass, no one wants to touch me with a ten foot pole.  This particular doctor is actually a wonderful human being and told me I should go to the Cleveland Clinic and get a work up to see what might be possible.  The problem is twofold: 1. That costs a ton of money. 2. I am not physically up to making that trip by myself.  So, I am stuck for now.  I can go back to Dallas or go to Houston and talk to the folks there… and I may do that.  But in the interim I have to deal with my pain.

So, what to do about pain?  Pain is my constant and unremitting nemesis.  At this point I have been unable to convince the ‘pain dr.’ to grant me more medicine.  They either don’t believe me or don’t really think it will help.  It is quite complicated.  I am working on finding alternatives as fast as I can.

One possibility is having a pain pump (or intrathecal catheter) installed.  I really do not want to do this.  I already have one installed device; the spinal cord stimulator.  I have a battery for that thing in my hiney.  As I understand it, the battery for this would go in my tummy and they would put another line of wire down my spinal column.  I wonder if there would be too many things going on back there?  Who knows??????

I am just way OVER myself.  I want to call the company that made me (must have been Walmart) and tell them I want a refund on this defective body.  It’s ridiculous to have this much crap go wrong.

I know that there are others out there that are in way worse shape than I am.  So far I don’t have anything that is immediately fatal.  I just have things that are chronic and annoying and will get me in the long run.  I can live with that but I cannot live with the pain.

I would welcome any advice at this point.

Unfortunately I do not live in a state where marijuana is legal, even for prescription.  So, it is not an option.  If I wish to continue to see a pain specialist, I cannot use pot.  Trust me, I wish I could magically transport my life to Colorado!!!  I think that would be a great choice on so many levels but it is not where we live.  So, here I sits.

I hate to write such a bleak post.  I really do.  I want to be all sunshine and happy thoughts but sometimes there just isn’t any room for sunshine no matter how hard I look.

It is in these times that I try to be still, to listen to the voice of the Divine and to hand myself over and simply say, “I can’t do this; help me.”  Sometimes I feel that works and sometimes I don’t.  The only constants are my furry four legged children and my furry  two legged husband and occasionally my two legged children, who seem to still need me in some fashion.  It is nice to be needed.

So that is my report from the battle field.

I am hunched over in a fox hole in the trenches and the artillery just won’t stop firing off rounds.  Maybe one day I will just stand up and make a run for it.  But for now I just cover my head and pray it will stop.

That’s all.