PAIN (SEE DAWN'S JOURNAL)

Please read Dawn's journal entry..........

http://journals.aol.com/princesssaurora/CarpeDiem/entries/2007/02/28/chronic-pain---debunking-the-myths/2595

My mood is always loopy when I am in pain.  And, in pain I am.  Aside from those crazy auto immune things I have going on, I also have a horrible spine.  My spine is a mess.  There is severe spinal stenosis going on.  Anklosing Spondolytis, Degenerative Disc Disease, too.  Plus, because of my blood clotting disorder APS, I have a number of blood tumors located through out the spine.  These tumors, we believe, have come because of either injury (I fall down the stairs a lot), or because of the inflammatory process, or just because I have a blood clotting disorder. They are unsure if they can be removed or not.  Sophisticated tests such as MRIs and CATs do not show the intricate make up of these tumors.  Meaning if blood vessels, etc are entwined within them.  So the only way to find out would be to go in there and take a look.  Nah, I don't think so.  I am not ready for anyone to poke around in my spine.

In 1975 my grandfather, who also had Anklosing Spondolytis, had extensive spinal surgery.  He ended up a cripple.  Now, I understand the reasons for his inability to walk.  It was 1975 surgical techniques were not as sophisticated as they are now.  He wasn't a very receptive patient and did not do the PT exercises necessary to keep his spine from fusing.  AS was a relatively new, un researched illness at that time.  But, still I am not ready to take any chances.  He had a rod put in his spine.  His surgery was 8 hours long.  Ouch.

Plus, because of the anticoagulation therapy (Jantoven, which is a generic Coumadin) there is a protocol I need to follow before any surgery.  I need to stop taking the Jantoven and go on Lovenox (which is low molecular weight heparin).  With Lovenox there is a high risk of paralysis when having spinal surgery.  So, I need to stop the Lovenox at least 24 hours (if not more) before the surgery.  Therefore, I will be unprotected during that time.  Which means I am at a high risk of throwing a clot and suffering another stroke.  Or pulmonary embolism or MI.  I've already had two strokes and I was lucky to have survived them with minimal damage. I was left with a seizure disorder and some left sided weakness.  I am not going to push my luck.

Yes, for a normal person, there is still a risk.  But it's normal risk.  I am not normal.  I am a science project.  Yes, if I have the surgery to remove the tumors my pain will diminish drastically.  I am still not ready to take the chance.

So I, monthly, visit my pain management doctor and leave with a fist full of prescriptions.  I keep this monthly appointment no matter what.  I don't think I have ever rescheduled.  I go there sick.  I go there no matter what.  And, yes my body is dependent upon the meds he prescribes.  But, no I am not addicted.  I don't buy drugs on the street.  I don't go crazy and sell my stuff to buy my meds.  I take what is prescribed and have only one or two times taken more than I was instructed.  I only did this after a phone call to my doctor.  I am on what is called a Duragesic Patch.  I take a high dosage of this.  I am also given something for breakthrough pain.  I think it's percocette or morphine.  It's generic so I am not sure.

My Lupus pain is managed wonderfully with these meds.  My back pain is another story.  Not a day goes by when I can say I have no pain. The pain caused by my back woes is so intense I cry, no sob in pain usually daily.  My sleep is disturbed because the pain wakes me up.

But, I go on.  I do the laundry.  I cook dinner.  I do stuff.  I just don't go out much.  I just don't think it's necessary for me to go out.  I don't have anything to do during the day except to go out and spend money.  So, why bother. There is nothing I need to buy.  We do our food shopping every two or three weeks.  And, if I can't do it, my daughter and her boyfriend do it for me.  They go armed with a shopping list, coupons and my Visa card.  She is actually better at it than I am.  She works in Pathmark so she knows all the prices.  She collects coupons so she always saves lots of money.  And, I think that they pretend to be a married couple doing their food shopping.  How cute is that?

When I can't cook or do laundry I don't.  My daughter does the laundry for the family.  And, because when I do cook, I cook a lot extra we always have left overs in the frige to eat or an entire meal in the freezer.  Or we order out.  I have two wonderful women who come here every two weeks (or every week, if I choose) to clean my house.

Living with pain is not a choice anyone would make.  Having or complaining about pain is not something most like to do.  I would prefer to be able to be silent about my pain.  But, I am unable to do that.  My pain makes me cry.  My pain makes me moan in my sleep.  A few times my pain has gotten so bad (a 10 or even more) that my body has gone into contractions.  My pain has caused me to have seizures.  I have vomited because the pain is so bad.

So, I gladly take the pain meds and prednisione that is prescribed for me.  And, I could care less if my body is dependent on them.

Thank you Dawn My Friend for bringing this to light.  People need to know about chronic pain.  I find it funny when people make uneducated, ignorant comments.  I know one person who makes more insensitive comments than I care to count.  This is the same person who after a colonoscopy took to her bed for two days.  The same person who after a root canal had to lay call in sick for three days.  Forget it when she gets a headache, the world ends.  I just laugh, that is all I can do.  Because trying to rationalize these things with her is useless.  I just hope that people like this never have to suffer chronic debilitating pain.  I pray that they never know what it is like.  Because I believe that they COULD NOT handle it.

Those of us who suffer from this type of pain are, indeed, strong individuals.  Our lives do not end.  We deal and try to move on.  Even when we can't we try.  Our lives have changed drastically due to our illnesses and the pain that accompanies them.  But, we are still strong.

Hugs, Lu