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Wednesday, March 20, 2013

All I Want is Eight Straight Hours of Sleep!

As the title says, I would give just about anything for eight straight, uninterrupted hours of sleep.  I'm talking about that deep, restful sleep that you wake up from, ready to take on anything life has to throw at you.  I can't remember the last time I had that kind of sleep.  In fact, I can't remember the last time I had eight straight hours of bad sleep, to be honest with you!  Sleep is one of the things that fibro, and chronic pain, has stolen from me, and it is one of the things I miss the most.  I am exhausted all the time.  And no, exhausted isn't an exaggeration!

I have always had problems with sleep.  I experienced my first bout of insomnia at the ripe old age of ten.  I can remember lying in my bed, crying, because I was so very tired and couldn't fall asleep no matter what I did.  However, when you are ten, you seem to bounce back from things like that pretty quickly.  And the insomnia wasn't a constant thing.  Every three of four months, I would experience insomnia.  I would have a couple of sleepless nights and then things would go back to normal.  I learned how to deal with the occasional sleepless night.

My real problems with sleep started with when I was forty and first started having problems with my back.  Pain would have me lying awake for what seemed like days at a time.  The only time I would sleep would be right after my pain medication would kick in, and then I would be able to sleep for three or four hours at a time, but we all know that medicated sleep isn't good sleep.  I learned to function on less and less sleep, and I tried to convince myself that I really didn't need all that much sleep.  We all know that isn't true at all!

The effects of sleep deprivation are with me on a daily basis.  Not only am I tired all the time, I am frequently short tempered.  I snap at my husband and children over minor things.  I know I'm doing it, but I can't seem to stop myself.  I also experience an increase in the amount of depression that I deal with.  I can also feel the effects in a physical manor.  I have more headaches than I used to have and I can tell that my blood pressure is elevated after a long period of sleeplessness.  I can't find the energy to do the things that I know I need to do.  Simple things become almost impossible.  I can't think clearly, and I know that all of this is related to my lack of sleep.

And now, here we are ten years after having major back surgery which was supposed to "fix" me and didn't.  I am still dealing with chronic pain, and I still can't sleep!  I average about four hours of sleep a night.  Those four hours are rarely straight through, either.  I frequently wake up during the night; sometimes for a few minutes and other times for a few hours.  Many nights, I will lie there trying to talk myself into sleep, only to give up and get up after a couple of hours.  Some days, I am lucky enough to be able to take a nap, and other days I'm not.  And even though I am getting some sleep, it's still not the same as those blissful eight straight hours of sleep that I crave!

Tuesday, March 12, 2013

It Can Happen to You!

In April of 2012, the Commonwealth of Kentucky declared war of people suffering from chronic pain conditions.  It was at this time that the Kentucky state legislature passed House Bill 1.  The stated purpose of this piece of legislation is to crack down on the numerous "pill mill" operations which were operating in the Commonwealth at the time.  Unfortunately, despite claims to the contrary, the true victims of this bill are those of us who suffer from chronic pain conditions, and the legitimate doctor's who provide pain management treatment.

We can all agree that the "pill mills" were not providing a legitimate service to legitimate pain patients.  Many of these offices operated on a cash only basis, and they would provide prescriptions of heavy duty opiates to anyone who could tell a good story.  Most of the patrons of these types of operations were not legitimate pain patients, but individuals seeking drugs, whether for there own use of to sell to the many people using opiate medication simply as a means of getting high.  Kentucky does have one of the highest rates of drug abuse in the country, with an alarming number of drug overdoses, and deaths. 

Unfortunately, HB 1 did not stop at simply shutting down the "pill mills".  All doctors in Kentucky have come under suspicion for prescribing opiate pain medications.  This includes both family doctors and pain management specialists.  The number of prescriptions for opiates that a doctor writes per month is held up to scrutiny by the Commonwealth of Kentucky.  Because of this, many good doctor's are now refusing to treat patients who are living with chronic pain conditions.  These doctor's are in a constant state of fear at the prospect of losing their licenses, and in return, their livelihood.  It is much easier for many of these doctor's to simply stop prescribing opiates except in the most extreme cases.

The fallout doesn't stop with the doctor's, however.  It rains down upon the thousands of patients suffering from intractable chronic pain.  If a person can find a doctor willing to treat them, the pain patient is immediately looked on with suspicion.  A state report is generated on each individual patient.  This report, known as a KASPER report, shows every doctor the patient has seen and every prescription the patient has received.  Because this report is required, each patient is at once looked upon as a potential drug addict.  This immediately makes the trust required between physician and patient difficult to achieve at best.

I have personally fallen victim to this new law.  Prior to receiving my Medicare, I was treated at a free clinic in my town.  The clinic was staffed with volunteers, from the people answering the phone, to the doctor's providing treatment.  It was very rare to see the same doctor more than once.  When I initially started going to this clinic, they were providing pain management services to me since I had no insurance and was unable to see a pain management provider.  Each time I went, I would see a different doctor, who would continue to prescribe my medications.

Two years of this went by, until I finally received my Medicare and was able to find a private physician.  During the course of my search, I reinjured my back and made an appointment with a local doctor. This doctor spoke with me for a few minutes, and then excused himself from the exam room.  Several minutes later, her returned and I could tell from looking at him that he was angry.  For what seemed like an eternity, he berated me.  I was called a doctor shopper and a drug addict.  I knew immediately that he had run a KASPER report on me and was seeing all the different doctor's that I had seen, as well as the number of prescriptions for narcotics which I had received.  I tried to explain to him about having been a patient at our local clinic, but his mind was made up.  He informed me that he wasn't willing to risk his career on a drug addict like me.  I left the office in tears, and, needless to say, I never returned.

If you think that Kentucky is an isolated case, think again.  This most definitely can happen to you!  Many states have already enacted similar legislation, or are looking into making similar laws.  I am urging you to stay informed.  Keep abreast of the type of legislation your state government is trying to pass.  Contact your state senators and representatives and let them know how something like this would affect your medical care, as well as your quality of life.  Many chronic pain sufferers are bonding together in our state, trying to get this legislation amended in such a way that chronic pain patients are better protected from legislation like this.  It is most definitely an uphill battle, but we are making some headway.  Don't bury your head in the sand!  Stand up and shout as loudly as you can that you deserve to be treated with dignity and respect, and do it before it's too late.

Friday, March 8, 2013

Depression

Those of us suffering from a chronic pain condition deal with depression periodically.  Living with never-ending pain is enough to make anyone depressed.  We lose friendships over our conditions.  Our activities are often limited at best.  We frequently have difficulty finding doctors willing to treat us.  If your are anything like me, you probably feel very guilty about the things you can no longer do for your families.  We do the best that we can, but so often feel like it's never enough.  I'm going through one of those phases right now.

As many of you know, my husband was recently hospitalized for 3 weeks due to a flare up of his condition.  He's home now, and that's a good thing.  The problem is with me.  I am feeling so resentful towards him right now.  This isn't something I'm proud of, and if I could just flip a switch and make those feelings go away, I would.  Unfortunately, it just doesn't work that way.  He has lost more ground with this flare up.  He has in home therapists coming to see him, but he isn't working on it when they aren't here.  More and more is falling on my shoulders, and I can't refuse to do things, or they just won't get done.

The last week has been especially hard on me.  I have had to be on my feet, running errand after errand.  The boys have had things they have to do, and I have had to take them here, there, and everywhere.  I'm not sleeping well, I still don't have any pain medication, and I am absolutely miserable.  I don't have the option of looking at my husband and saying, "I don't feel like doing this.  You do it.".  Because of this, I feel myself slipping deeper into a depression.  Quite frankly, I am miserable right now.

Quite honestly, if I could find a big enough hole, I would crawl into it and pull the dirt over the top of it.  But again, this isn't an option.  I need a break, and there isn't anyone to give me that break.  Finances are difficult right now.  Dale's medication upon leaving the hospital cost around $350, which isn't in the budget, but he has to have the medicine.  I am at a loss for what to do right now.  I am honestly thinking that I am going to have to give up my disability and find a job, but I don't know if my body will allow that.  But something has to give, and I am the only one who is able to do the giving at this point.

I feel like a horrible person right now.  I can't do enough for anyone, and everyone needs something from me.  I want someone to take care of me for a change, but that isn't going to happen.  I really do try to stay as upbeat as possible, but right now, I just can't pull myself up.  Thank you, my friends, for letting me vent.