Nikki gilliesnik@aol.com would like feedback from any readers about this situation--

 

"Sorry to bombard you all with my problems, but I know that someone out there must know how to get the medications that they need without paying thousands of dollars.

My private medical insurance just ended and I am officially on Medicare. I also signed up for Humana, one of the supplemental policies to increase the number of prescriptions covered.

My question/concern is this. None of my pain medications are covered, or if they are, the number is very few. For example, I usually get 180 Actiq pops, but Humana allows me only 6 for the month. 6!! That's enough for 2 'good' days. If I pay for the rest out of pocket, it's crazy amount of money: $1,500 for Kadian, $4,500 for Actiq and then you add on Effexor, Provigil, etc etc.

Medicare gives me like $50 more than the low income option, so I don't qualify for that.

How do I go about getting my prescriptions paid for??

The pain pills they do cover like methadone and duragesic, I'm allergic or have really horrible reactions too.

My appt is on Tuesday, so I'm completely freaking out. I was hoping someone had experience with this and advice to give me!! In other words, HELP!!!

And I thought all my problems were over when I became 'officially' disabled!! yeah, right!

 

 I get too much money from Social Security to get Medicaid (by like a $100!).  Who would of thought that I'd ever think I was getting too much money. Sure looked like a little piddling check to me!!"

Nikki  gilliesnik@aol.com

 

 

 

The apostle Paul went through a lot of suffering.  He was beaten and whipped many times, left for dead, put in prison and stocks for preaching the gospel, shipwrecked, and often went without sleep and food.  In additional to his physical trials, he had emotional trials as well--false friends, etc.  Those of us who suffer with chronic illness can take comfort in this verse, which was written by a man who understood pain.

 

There's a great devotional book (given to me by a friend several years ago) that I read it through 4 times, it was soooo good! It's called STREAMS IN THE DESERT, VOLUME 1 by Mrs. Charles Cowman--a compilation of scriptures, stories, quotes and comments.  The lady who wrote this volume had experienced a lot of suffering in her life.  Her depth of insight has made her book a Christian classic that has stood the test of time.  Many times the reading for the day spoke to me in a remarkably personal way and comforted me when I was going through terrible trials.  I underlined and marked nearly every page--they were full of nuggets of spiritual wisdom and inspiration. 

 

 

Cute!--

 

"'Twas the month after Christmas, and all through the house, Nothing would fit me, not even a blouse. The cookies I'd nibbled, the eggnog I'd taste At the holiday parties had gone to my waist. When I got on the scales there arose such a number!

When I walked to the store (Less a walk than a lumber...), I'd remember the marvelous meals I'd prepared; The gravies and sauces and beef nicely rared, The wine and the rum balls, the bread and the cheese And the way I'd never said, "No thank you, please."

As I dressed myself in my husband's old shirt And prepared once again to do battle with dirt--- I said to myself, as I only can "You can't spend a winter disguised as a man!"

So – away with the last of the sour cream dip, Get rid of the fruit cake, every cracker and chip Every last bit of food that I like must be banished 'Till all the additional ounces have vanished.

I won't have a cookie--not even a lick. I'll want only to chew on a long celery stick. I won't have hot biscuits, or corn bread, or pie, I'll munch on a carrot and quietly cry.

I'm hungry, I'm lonesome, and life is a bore, But isn't that what January is for? Unable to giggle, no longer a riot. Happy New Year to all and to all a good diet!"

 

 

 

 

 

 

 

 

Well, Donnie is now teasing me about being a "TV star."  HA!   Last week, three of us were interviewed by a local TV station about fibromyalgia---Carla (a lady on our Million Letter Campaign team), Regina (a representative from the Arthritis Foundation) and myself.  I must admit that being in front of a camera with a microphone in your face is unnerving!  But the other two ladies did a GREAT job!  They were well-spoken, knowledgeable and definitely camera material.  I don't think I made much of a contribution since I don't think well on my feet, but one point I made that I hope they air is that the three of us are from different nationalities, yet we all have--or in my case, "have had"--identical symptoms.  (I am Chinese-Urkainain, Carla is very fair, and Regina is black.)  In the past 9 years of having my FMS/CFIDS website, I have heard from countless thousands of sufferers who live all over the world.  This illness knows no ethnic boundaries and afflicts people who live in drastically different climates, with different diets (including vegetarians), and have different cultures. I personally think FMS/CFIDS is a mycoplasma infection http://www.fms-help.com/mycoplasma.htm that attacks the hypothalamus (the body's "fuse') when our immune systems become compromised from too much stress.  Just my theory!

 

Well, that's all for this month.  I hope you have enjoyed the newsletter and learned some new things.

 

May God bless you and your loved ones in 2005!