And now more than eighteen months have gone by... Stir your imagination once again...
Imagine that you now have suffered with Lyme Disease for nearly five years. You have Multiple Sclerosis too, with all its symptoms of tremors and flinches and weakness, but it is immune to the regular MS treatments. Why? According to information you track down on the Internet, your MS is a mimicry caused by the lyme spirochetes eating at your brain... but not your myelin nerve sheaths, apparently. You are pretty sure that you've finally determined why your nerves become so hyper-sensitive every day... why they zing, as you call it. Researchers claim that the nerve zinging is caused by a neurotoxin buildup in your system. But no one seems to know how to treat it!
Imagine next that in the middle of 1998, you finally had received serious treatment for the Lyme Disease. But then of course, right in the middle of it, your insurer cut the treatments off...AGAIN, and at $1300.00 PER WEEK you couldn't afford to continue them. Because of this, you are not cured of the devastating infection, and the chances of a cure are slipping farther and farther away. To make matters worse, your insurer, US HELLCARE, drops your coverage without giving you any warning or alternatives... and sticks you with several thousand dollars in medical bills. Thanks to the ERISA laws, you can't even file a lawsuit about any of it.
So you are back to square one. Imagine you have been in relapse for well over a year. You are just as ill, or perhaps moreso, than you were before you sought treatment. You survived a 24-hour stomach flu that lasted three weeks. Twice, you almost died because of it. Yet, your family physician doesn't think you have Lyme Disease anymore. He thinks you are having an severe immune reaction triggered by the disease. But, he doesn't have any solutions or treatments to offer. However, the lyme specialists are firm in their belief that you still are infected and that it will be difficult, or perhaps impossible, to ever cure you. You can't afford to see any specialist however, even with help from Medicare. If you could get Medicaid, they might pay for the lengthy treatments. But, you make too much money from your disability insurance to qualify for Medicaid, despite the fact that one of your prescriptions costs almost $400 a month! You have lost your faith in doctors...once you looked up to them... because they don't have any answers, and they don't seem to care enough to try to find solutions. Well-meaning friends and acquaintances swear to you that Alternative Medicine will help and cure you, so you try the different suggestions, and visit the various practitioners. But, you keep having to ask yourself...why doesn't it work? You stop seeing doctors anymore. You are so tired, so very tired, of getting nowhere.
Imagine your despair when you realize... Nothing has really changed!! Despite struggling to get your health needs met, despite battling US HELLCARE in the NYS Insurance Department (even winning sometimes), despite years of patiently working the system, nothing has changed! You still feel like hell all the time! The neurologists and neurosurgeons say they really can't do anything about your spine, partly because of your illnesses, partly because there's too little chance for success. The Lyme specialists say any cure will take years, and be extremely expensive... and they are doubtful whether it would be successful anyway. Perhaps, maybe, you can find a way to get it under control somehow....But How?
Crying sometimes helps you make it through the day. You cry because you feel like hell. Every day you stumble along your way, ill and in pain, and so weak and fatigued that you can hardly move. Several days each week you are unable to even get out of bed. You cry because you are too weak to participate in Life. Your nerves flare up every day, becoming so hyper-sensitive that a slight breeze can be excruciatingly painful... and you often cry because you hurt so much. The medication you must take for the pain and hyper-sensitivity, Oxycontin, makes Demerol seem weak. That's been harshly proven to you when you needed to be in the Emergency Room. The ER physician tells you that all he can give you is an injection of Demerol....that it's not as strong as your medication, but it should work. It DOESN'T! So you suffer, and you cry.
Imagine how you feel everytime you face the fact that you can't work a job anymore, or walk a mile (when you used to run 6 miles every morning), or even take a bath without some help... Or the sadness you feel when you see that your spouse is hurting too, feeling helpless while watching as you seem to be slowly withering away. You are so very grateful for their love. It seems to be all that you have left. You discover you cherish your family, your pets, and all the other little good parts of life, more deeply. So, you nurture and protect that small spark of joy as best you can. You savor the understanding that each day is complete in itself. Imagine you have confronted your mortality and made peace with Dying. You do not fear the final sleep, for with it comes the end to your suffering. Since that blessed sleep is not imminent (so far as you know), you keep on living... living with an intensity that may carry you for many years more. It is that realization that disturbs you most; that possibility of a long, emotionally intense illness, financially draining your family...
I am Laura, and I don't have to IMAGINE... I LIVE it... If I seem, to you, a little ragged around the edges...Forgive Me... After all, it is difficult to remain civil all the time when the only thing you can truly count on is PAIN!!
Laura Stephanie deGrey
I am so tired of feeling that no-one gives a damn.
© 2000 Laura S. deGrey. All Rights, Privileges and Responsibilities retained.
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