Thursday, December 31, 2009

Out With The Old...In With The New



Continue to stay POSITIVE in 2010

Monday, December 28, 2009

Copaxone Price Shock














Presently, I cannot complain with how much I pay for prescription medication, but it is just a matter of time I will have huge out of pocket deductibles for my medications. I am fortunate to have the benefit of getting most of my prescriptions filled at a Military base pharmacy at no charge. However, I noticed prescriptions I take are slowly being phased out and I have no choice but to go to an outside pharmacy. In the past my co-pays use to be $3.00 generic and $9.00 brand. My co-pays are now $3.00 for a generic, $9.00 for a brand formula drug and $22.00 for a brand non-formula drug. If you are thinking most of my drugs are now brand non-formula...ding ding you are correct!

I made a conscious decision to not become dependent on the many drugs MS'ers are prescribed for every nuisance the disease bring our way. Yes, my neurologist did not like me taking most of my drugs as needed. My rationale to her dislike is...I am the one living with MS and I know my body better than anyone. I am not trying to play doctor, but I do know that I feel a lot better taking medication as I need it than taking it every day when the MS symptom or symptoms are no longer present.

However, Health Care Reform is definitely needed in America. Although, IMO what is being called Health Care Reform is a bunch of BS...KO eloquently tells you WHY! Washington needs to stop the RAPE of American citizens from the fraud and abuse of the Health Care and Big Pharma Industry...AND Washington needs to stop the BS political games at our expense! We are being raped with higher deductibles and co-pays because of the bullshit I just discovered. It is a damn shame how one pharmacy chain can charge almost twice as much for Copaxone and not be held accountable to WHY they are charging more than another reputable pharmacy chain.

Case and point, for years I have been filling my Copaxone prescription at the grocery chain Kroger Pharmacy, until December of 2008, I decided to have my Copaxone filled at Walgreens. Now I know how Walgreens can afford to have a pharmacy on every corner in about every state. I always assumed my insurance was paying Walgreens the same as they did Kroger after my co-pay until today. Express Scripts never sent me an Explanation of Benefits before today. They were not doing me any favors, what they were doing was soliciting me to mail order my Cymbalta through them; Which I plan to do because I can receive three months supply for $22.00 a month. Duh, who would not want to save $44.00? The SHOCK on the EOB was the amount TRICARE was paying Walgreens after my co-pay; I thought it had to be some sort of mistake. Therefore I went and pulled my 2008 prescription profile to see if Copaxone had a 100% price increase.


I discovered in November 2008, after paying my $9.00 co-pay at Kroger's for my Copaxone, my insurance paid them $1,783.00, which was an increased from 1,666.97 three months prior. However, in December 2008, I discovered after paying my $9.00 co-pay at Walgreens for my Copaxone, my insurance paid Walgreens $2,806.00 that is a freaking $1,023.00 difference. ..WTF!

Here is the industry BS according the EOB from Express Script I received today. Walgreens submitted a bill of $3,005.51 for my Copaxone, my insurance allowed amount is $2,562.19, I paid my $9.00 co-pay and TRICARE paid Walgreens $2,554.53. That amount is still MORE than what Kroger charges. Walgreens is pricing their drugs pass the allowable amount, knowing they will get paid the maximum amount allowed by my insurance...I have a bridge to sell you if you do not think the system is broken! It does not take a rocket scientist to see what the eff is going on with the industry.

Hell, its just a matter of time I will be paying for this fraud and abuse. It does not make any freaking sense how one monthly disease modifying drug cost $30,746.28 a year...at that rate a cure will never be found. TRICARE should have never paid Walgreens that much money. TRICARE would have been more cost efficient and proactive in their efforts of informing ME the drug I depend on daily to slow the progression of my MS cost them $21,396 a year at Kroger Pharmacy.

TRICARE listen up, I am going to save you $9,350.28 a year...I am switching my Copaxone prescription BACK to Kroger Pharmacy. How about a THANK YOU!

Wednesday, December 23, 2009

PEACE ON EARTH





To all:

My Christmas wish for you, my friend
Is not a simple one
For I wish you hope and joy and peace,
Days filled with warmth and sun.

I wish you love and friendship too,
Throughout the coming year.
Lots of laughter and happiness,
To fill your world with cheer.

May you count your blessings, one by one and when totaled by the lot, May you find all you've been given, To be more than what you sought.

May your journeys be short, your burdens light May your spirit never grow old, May all your clouds have silver linings, And your rainbows pots of gold.

I wish this all and so much more,
May all your dreams come true,
May you have a Merry Christmas friend
And a happy New Year, too.


MERRY CHRISTMAS TO ALL AND A BLESSED NEW YEAR!

Sunday, December 20, 2009

2010 National MS Society Scholarship



Sorry I am late posting the National MS Society scholarship information this year. Fortunately, you still have 3 weeks to get it done for yourself, graduating son or daughter...deadline is January 15, 2010.

• Who is eligible?


o High school seniors who have a parent with MS who will be attending an accredited postsecondary school for the first time.

o High school seniors who have MS and will be attending an accredited postsecondary school for the first time.

o High school (or GED) graduates of any age who have MS and who will be attending an accredited postsecondary school for the first time.

o High school (or GED) graduates of any age who have a parent with MS and who will be attending an accredited postsecondary school for the first time.

o Applicants must be United States citizens or legal residents living in the U.S., Puerto Rico, U.S. Virgin Islands, Guam or any other U.S. territory and plan to enroll in an undergraduate course of study at an accredited two-or four-year college, university, or vocational-technical school located in the U.S., PR, VI, Guam or any other U.S. territory. Applicants must be enrolled in at least six credit hours per semester in course work leading to a degree, license, or certificate.


Click HERE for application and process

Sunday, December 13, 2009

Marie Claire Should Have Thought Twice About Running This MS Story...



I was sent an email to read and give my opinion as a blog post on the following article, "I Had an Unthinkable Disease...And Made Myself Better" written by Kate Milliken, as told to Abigail Pesta, that appeared in Marie Claire January 2010 magazine.

Yes, my story is controversial. People worry that I'll spread false hope. Once, a woman who had suffered from MS for 30 years said to me from her wheelchair, "Don't tell me to put a Post-it note on my mirror—give me a break." Some say maybe I never had MS to begin with. All I know is that the doctors diagnosed it, and I have the before-and-after MRI scans to prove that a lesion had come and gone.

I continue to take the injections, along with a few vitamins.


First let me say, YES! Her story is controversial. It is also irresponsible of Marie Claire to publish the article of person who was diagnosis with MS and twelve months later they are claiming to no longer have signs of MS lesions. The storyteller did not say if she had her MRI's with and without contrast. There is a chance of having an MRI without contrast that will not show lesions clearly that is why when given an MRI it is best to have it with contrast so there will be no dispute of the reading.

I have an issue with the story teller stating in the article, "A day after my scan, I met with one of my doctors at Mt. Sinai, Dr. Stephen Krieger. His words floored me: No new lesions. As for the lesion that had caused all my problems? It had "faded significantly," he said.

"Is it smaller?" I asked him.

"It's actually so faint, the radiologist didn't recognize it," he said. "That's as good as it gets."


I have to believe she was given an MRI without contrast. It is irresponsible to claim she no longer have MS lesions. If she no longer has lesions or symptoms of MS, why continue to take daily Copaxone injections, one of the drugs that slow down the progression of MS. You either have MS or you do not, as far as I know, as of today there is no known cure for MS.

I am happy for her that she is no longer having an MS exacerbation. There is nothing wrong with positive thinking and adjusting your lifestyle to live with an unthinkable disease, but is wrong and irresponsible to claim to no longer have MS lesions because of holistic treatment, but your still taking a daily disease modifying drug injection.

What are your thoughts?

Thursday, December 10, 2009

Soldier of Love

It has been 10 long years and I resigned to the fact she was not going to release any new music, as far as I am concern her music is classic and I enjoy listening to it often. However, I am ecstatic SADE is BACK! Here is a single released from her upcoming new CD in stores February 2010.

Sunday, December 6, 2009

From Math-A-Thon to Marathon



I am so proud of my baby girl for running in the St. Jude Marathon. The temperature at the start of the race was in the low twenties. Her group finished a little bit over three hours. My poor baby legs are sore, but like she said, "I am sore behind a good cause." I remember like it was yesterday when she use to raise money for St. Jude volunteering in the St. Jude Math-A-thon when she was in elementary shool. It felt GOOD to see her continue the values I taught her while watching her come across the finish line at Auto Zone Park running in her first half marathon ( 13.1) miles on Saturday, December 5.


CONGRATULATIONS! TARA, BARBARA and CHASITY (mom and daughter, Tara's other mom and sister) for completing your first marathon as team "Curls R Us". Now that they have the marathon bug, I have the travelling bug to CHEER THEM ON. Next stop New Orleans the Mardi Gras Half Marathon in February.









L-R (my baby)Tara, Barabara, and Chasity


On a sad note...

A woman died after completing the half marathon. Her death was the first death in the thirty years St. Jude has been doing marathons. My condolence to her family.

Tara's experience in her own words that was published in the paper.

Friday, December 4, 2009

Bloggers BEWARE




The Federal Trade Commission revised their rules for bloggers when it comes to giving endorsements or testimonial about a product or service.

Bloggers who receives cash or in-kind payment to review a product is considered an endorsement. Thus, bloggers who make an endorsement must disclose the material connections they share with the seller of the product or service.

The revised Guidelines state:

Bloggers and online word-of-mouth marketers are require disclosing any material connection to a company when reviewing the company’s products or services (failure to disclose any payment or receipt of free product from an advertiser or someone acting on their behalf could expose you to liability).

Click here for entire revised FTC revised guidelines.

Nice to know I do not have to worry about being expose to any liabilities because when I blog about a drug or a product I am not getting paid by Big Pharma or a Corporation.

It was just a matter of time that the FTC changed the rules and regulations because of the massive amount of people who blog and or have a social network site. IMO, it is about the FTC revised their rules and regulations on endorsements or testimonials. If a person is getting paid to speak good or bad about a product or service, it is an unfair advantage or disadvantage.

Now it time for the FTC to get to work on regulations for individuals and organizations with blogs, that are being paid by Big Pharma, the Health Care Industry and Big Business when it comes to politics in American.

Claiming "Freedom of Speech" when you are being paid to influence legislation and be divisive is getting old.

Saturday, November 21, 2009

Stress Control for the Holiday Season



I was apprehensive when I first began blogging about my personal life living with ms, then a few of my politic views, and social issues for the world to see. I never expected anyone to really read my blog. Instead of going to a MS support group, blogging became my therapy. To my surprise thousands of people read my blog a month and my blog went from being worth zero dollars, then to $4,205.00 in 2007, and now today worth $10,726.26.

I could not believe it when a major newspaper offered me a freelance writer job because of my blogging. To get paid monthly to write articles for the last two years have lifted my spirits, because I was devastated when my multiple sclerosis symptoms caused me to stop working in a profession I loved. (I know some of you are probably wondering how did that happen with the writing errors I makes on some of my posts. All I can say is do not let my writing fool you on my blog...lol). The second great thing to happen from blogging is that I have gotten to know some wonderful people via cyberspace.

Most importantly it has been amazing from the emails and comments that my honesty about living with ms has helped them. In addition having my blog featured on two well respected medical websites. Finally, to have a freelance writer wanting to guest blog on my blog with helpful articles is the icing on the cake. I love the article she wrote and I am looking forward to her doing more.

I hope you all enjoy the following article "Stress Control for the Holiday Season" by Mary Ward as much as I did...



The holidays are here again, and for many people that means a great deal of joy. For many people, the holidays also signify a whole lot of stress and anxiety as well. As the family comes together and there’s so much to do, it’s easy to see how anybody can quickly feel the stress. Don’t be a victim of the holiday stress! There are some simple and effective ways to control it so that it doesn’t overtake you. If you think through things in advance and work hard to remember what the season is all about, then you can learn to cope with anything that comes your way.

Have a Solid Plan

The problem for most people is that they don’t have a plan. Between the cooking, the shopping, the decorating, the baking, and writing out Christmas cards it can all get a bit overwhelming. Fortunately if you approach it with a clear head and have a plan, you are sure to be far more successful. Take the time before the craziness hits to plan out everything that you have to accomplish, and be sure to prioritize. Make a master “to do list” that can serve as your work in progress. List out the people that you need to buy presents for, the food that you have to shop for, and anything that you need to accomplish along with any deadlines associated with each activity.

Remember What It’s All About

The holidays can quickly become stressful if you don’t stop to remember what they are all about. If you have kids in your life, look at the joy on their face that the holidays bring. Think back to any special memories, or find a way of reconnecting to good times shared in the past. This is meant to be a joyful time and if you can actually take the time to remember that, then it will make it much more enjoyable along the way. Sometimes taking the time to enjoy the journey as much as the destination can bring much joy in and of itself.

Stay Organized

Though it sounds obvious, many people lose their way at some point. You may have the best of intentions and start out with a good solid plan, but somewhere along the way it gets lost. Either you give into the stress or you end up coming across additional tasks or unforeseen circumstances. Do your best to update your list, stay organized by checking off what you’ve already done and what you still have to do. Wrap presents as you get them for example. When you’re heading to the grocery store, make a master list of everything you’ll need for cooking and baking. If you have the opportunity, you can even try to buy some items ahead to save you the last minute trips. Staying organized along the way, no matter what is thrown at you, can save you a lot of stress during the holiday season.

Mary Ellen Ward blogs about how to choose among LPN to RN degrees.


From ME (Blinders Off) to YOU

Tuesday, November 17, 2009

In The Arms Of ANGELS



When I first heard and saw the picture about 5-year-old Shaiya Davis, I said a prayer for her safe return. Seeing her beautiful face took my mind back to all the wonderful times I had with my daughters at that age and I thought about how I would KILL or DIE for them.

I feel sadness and I say a prayer for every young child that has been reported missing and died at the hands of another. Shaiya Davis, touched me like no other story I have ever heard. I cried as if she was one of my daughters, I prayed for her like I never prayed before. Shaiya Davis is safe now, she is in the arms of Angels and I thank God for bringing her home to a place no one can ever hurt her again.

I cannot imagine not loving my daughters. I cannot imagine not protecting my daughters. I damn sure cannot imagine passing my daughter to sexual deviants. Most of all I cannot imagine my daughters leaving this world before me.




The death penalty is too good for this MONSTER Antoinette Nicole Davis. She deserves no protection from prison justice by putting her in isolation; put her in with the general prison population to receive prison justice. Then put her back in her cell nightly so her demons can destroy her because she allowed her demons to destroy Shaiya Davis.

Saturday, September 26, 2009

The Fight Is On Today!




My body is tired, but my mind is not. Nerves on my right side is burning and tingling, but my left side is not. It feels weird when one side of your body feels very different from the other the last time I felt split in half it was the left side of my body.

My body is tired and my mind is not because INSOMNIA decided to visit me. If INSOMNIA thinks it is going to prevent me from doing what I have to do later today it have another thing coming.

My day is going to be interesting because MS causes life to be out of the ordinary. We have to adjust to the burdens of the symptoms of MS and I have plans that I must and want to keep today.

However, at my last neurologist appoint a month ago. I did mention to the doctor how painful my fingers were in my right hand. She told me what I already knew, which was it was the nerves in my fingers. I am an expert on distinguishing PAIN, but I would not wish NERVE PAIN on my worst enemy. It is one thing to have severe pain, but serve pain that also burns is HELL. Let me get back to my neurologist, insomnia is causing my mind to wander.

It is time to give the doctor a call because the nerve pain in my right hand fingers is now afflicted my entire right side and feeling slight dizzy on and off. In the early years of living with MS, I would have stress myself out wondering what is going on, but now I know better. Not that I am playing doctor, but I am 99.9% my doctor is going to order up Solu-Medrol…the remedy when MS exacerbate.

Nonetheless, that call can what until Monday; there is no need for me to ruin the day I have plan. I am tired and my right side feels like Hell, but I have a plan...THE FIGHT IS ON.

I PLAN TO WIN TODAY!

Monday, September 14, 2009

Fight The Symptoms MS Throw At You


I AM BLESSED
click the title and hear why I am BLESSED

Thanks for the well wishes by email. For those who have been reading my blog for a while you know I do not get religious on you because I do not believe in pushing my faith on others. We each have to answer for our self when that time comes.

However, I am shouting it today I Thank GOD for BLESSING me. It is no secret for us who live with multiple sclerosis that it is a terrible illness, but I am thankful for what living with multiple sclerosis has brought to my life. Hmmm, I bet some of you are asking yourself, “WHY”...Let me tell you why.


There was a time when the pains I live with daily intensified to the point were I was ready to take my life. During the last several weeks, I have been living with so much pain that would bring an elephant to its knees. The pain was in my entire body, but it magnified in certain areas. This may sound crazy, but I felt as if I was at war with good and evil. Ummm, let me explain myself before you all think I am nuts.

Some of you know I have not let my disability keep me from fighting injustices and being involved to empower our youth. Thankfully, I had not had to fight any injustices lately, since I have been successful in unseating our last Mayor to bring about change in my community. I have been busy with a non-profit in bringing a program for the underserved (I will talk more about that on another post) and working with the Kiwanis (which I am a member). Out of nowhere the pain, I was use to on a daily basis start intensifying; it was becoming difficult to move. I would wake up stiffer than the Tin Man from Wizard of Oz. MS is a mean SOB; it is as if when you try to continue to have a life, it throws one or more of the many symptoms your way. It does that because it wants you to lie in bed all day and feel sorry for yourself. I REFUSED to do that once I went through my grieving period after my initial diagnosis. I witness too many MSers give up on life and they are now in a wheel chair or in a nursing home.

The fight was on these pass several weeks, I oiled myself up by thinking positive when I woke up. I made myself get out of bed; I made myself make it to meeting for the causes I was working on this summer. The good out of this was the people I was working with never knew the difference. I did not have to go around them when I was too stiff to move, I made up for that by doing what I could from home. It was the fight of pushing on is why I am back to blogging. The evil of the pass several weeks was how my MS PAIN tried to take me down. I am going to try to draw a mental picture. Pain exploded through out my body like a nuclear bomb and while one nuclear bomb went off in my body another localized in three of my right fingers making that area worse. I am right handed and it was so bad, if I was not in my right mind I probably would have cut my fingers off, because I kept moving PAIN deciding to explode another nuclear bomb in my head. I was tempted to put on a morphine patch (yes, although I kicked the morphine, I did not throw out my last refill), because I am bless, I did not put on a patch. To get some relief, I down a couple of Lortab 10mg a day, which is not bad because you know we can take up to six a day. I did not want to go back to dependency of Morphine, although by using morphine I do not feel PAIN. I could not go back to it because I know it was slowing killing me (causing problems with my heart).

I vowed the last time PAIN drove me to the point of taking my life, I would never allow PAIN to do that to me again. I am blessed because I did not once THINK about going there. I am blessed because I did not give into pain and start taking morphine again, finally I am blessed because the program for underserved children started September 12 and I was able to do my volunteer duty with the Kiwanis where hundreds of young children have ID’s with COMEC if (God forbid) they become missing.


It is not over until God says it is over keep fighting and praying while living with Multiple Sclerosis or any other chronic illness.

Friday, August 7, 2009

Notice of Address Change



click on picture to read

I use to dread the summer because of heat. Heat is like kryptonite for us MS'ers. I am now beginning to dread Summer time because this is the second year in a row death has taken people who have a special place in my heart.

I have been trying to keep my spirits up since the lost of Cookie. Then I heard about my Uncle Julius being sick with cancer. No sooner had I heard about him being ill, the angel of death called him home. I felt bad that the pain I have been experiencing kept me from making it to his funeral and I could not be there for my father who had lost his oldest brother.

I know my father understood why I could not be there and I know Uncle Julius is in a better place. It was a blessing he did not have to suffer long when he was told he had cancer. I have not been blogging lately because I have a heavy heart and my body is in pain. It hurts to type when I also have pain in my fingers. I been wanting to put a tribute to my Uncle on my blog and what better time to fight through my pain and put the above Notice of Address Change, I received from his son today. The notice definitely lifted some of the heaviness I feel in my heart.

Rest in Peace....Uncle Julius

Sunday, July 26, 2009

Bee Venom Love



I am sure every mother feels their daughters are the best. I know I do, I thank GOD for my jewels. I am thankful that I lived to see myself in my girls; there was a time I did not think I would be around to see them grow up to be the beautiful women they are today. Having them in my life has made it easier to live with this ugly disease called multiple sclerosis.




Everyday is a struggle getting up; everyday is different from the next. During the past two weeks, it took every ounce of energy I had to go on with my day against the pounding punches of PAIN. Many days I wanted to relieve myself from this excruciating pain by putting on a morphine patch.

I wanted it so bad, but I refused to give in because I NEVER want to experience this again. I cannot hide anything from my daughters; they seem to know when I am having a hard time with multiple sclerosis. I opened my email one day and received the following from one of my daughters:

Mom I saw that honeybee venom is a therapy that treats MS pain. I saw this on "Radical Hollywood Remedies" last night and did some research and found this link about it. On the special, it says the honeybee therapy cost $75 a session. I suggest you try this and I will pay for your first session. I suggest this because I truly believe you should try natural remedies to lure yourself off the drugs. It doesn't hurt to try natural procedures since God put them on earth for us to use to heal our bodies to live a longer healthier life. Everyone please let me know all your thoughts on this.

http://health.discovery.com/centers/althealth/beetherapy/bkgsclerosis.html


Then there was this reply email from another daughter:

I think it's an absolutely wonderful idea! I'll try it with you!


I appreciate my daughters looking out for me and wanting to pay for me to have some bee venom because of their love for me, I do not know if I can do this. I am paranoid about trying something new. I know I do not want to go back to wearing morphine patches again and my doctors do not want to prescribe Lortab like they use to...thanks to all the accidental overdosing in the entertainment industry.

I survived this many years living with pain, with God’s help, I will make it some more years. However, I am open to natural pain resources; I am not saying I will never try bee venom as a natural pain remedy. I am old school and I have to get over my paranoia trying new drugs or natural remedies…blame it on my Daddy I get it from him :-)

Saturday, July 11, 2009

THE REAL CULPRITS OF EVIL

MONEY... GREED... AND... HATE


ARE THE CULPRITS DESTROYING AMERICA

Wednesday, July 8, 2009

Rollercoaster Day



I should be use to it, but how can you get use to not knowing what MS symptom you will experience from minute to minute, day to day. Today is one of those days, I had hope the MS roller coaster ride I felt my body taking would not last the entire day. So much for hoping, it has been getting worse as I type my woes. A new day is approaching maybe it will be better than today.

I am home alone and I have been tempted to call one of my daughters, instead I do what I always do to take my mind off how I feel. I go and visit the many blogs I like to read. I post comments regularly on some of my fellow MS’ers blogs. You can count on one had how many times I ranted in the four years I have been a blogger.

Today I did something out of character. I know I can rant on my fellow MS’ers blog, but today I ranted about trolls taking over one of my favorite blogs that is not someone who lives with MS. What the blogosphere do not know about us MS blogger we blog about current issues or whatever the heck is on our minds. Unfortunately, my rant was not on that blog it was on another blog I like that is not troll infested.
What I did not expect was someone taking it personally.

As I thought about, I think some people look for any reason to get pissed off. I do not engage in cyberspace arguing, what is the point of that. We all have a right to our opinions, I read many opinions I do not agree with, but I am not going to beat you over the head to drive my point of view home. There is a difference in toll engagement and engagement for understanding.




Trolls take over blogs when they should get there on damn blog since they have so much to say and provoke a response to practically every damn comment. Trolls intent is to engage that is why I do not freaking engage trolls. I was hoping the trolls that invaded my favorite blog find another home. Hell, they are starting to multiply. The main troll now has a following that is taking over the comment section from the regular people who comments that I enjoy reading.

I do know this I WILL NOT allow the trolls that invaded my favorite blog to run me off from reading it. Now that the troll followers are commenting with their leader and amongst themselves, should not be long before they will highjack another blog or go back to their leader blog.

Tuesday, July 7, 2009

Finally At PEACE



Michael Jackson Memorial Service was BEAUTIFUL. I remember that day in 1969 when the world saw Michael Jackson and his brothers on the Ed Sullivan Show. I grew up to the music of a genius and in my eyes as a Black American, HE DID bust down doors that were closed to us.

I enjoyed the entire Memorial, but there were three highlights for me that reflected Michael Jackson and how he should be remember. Maya Angelou poem written for Michael that Queen Latifah read, eulogy by Rev. Al Sharpton, and the eulogy by Congresswoman Shelia Jackson Lee

I know this is too much to ask for, but I hope the mainstream media put a STOP to dragging his name in negative talk. If they must keep talking, talk about his talent, and humanitarian deeds. We all live in glass houses, unfortunately, a super star as Michael Jackson always had someone throwing rocks to shatter his glass house for financial gain.

He never had a normal life. He could not enjoy a stroll in the park, shop with his family in a mall, take in a movie, and go to a grocery store…you get the point, without being stalked or harassed. He was a prisoner who had to create his own NEVERLAND to have some sort of normalcy in life.

Michael Jackson completed his purpose God gifted him to do and now he is at home…

FINALLY AT PEACE

Sunday, July 5, 2009

Funding For Community Health Care Centers





On June 29, 2009 First Lady Michelle Obama announced the release of $851 million in grants to address immediate and pressing health center facility and equipment needs and increase access to health care for millions of Americans




"Community Health Centers provide care to the Americans who need it most and their work has never been more important," said Obama. "These grants will help Unity’s Upper Cardozo and thousands of centers across the country expand and serve more Americans who simply can’t afford insurance coverage anymore. ."




To find a Community Health Center in your state click here








Monday, June 29, 2009

Against Medical Advice





There is no doubt in my mind had I not had insurance the hospital would have booted me out when all indications were that I was stabilized from the reaction I had with Copaxone and tests showed that I did not have a heart attack. The only reason they wanted me to stay for further heart tests was because of my family history of heart disease.

When are doctors going to realize a person who lives with a chronic illness know their bodies better than anyone does? Most importantly, chronically
ill people know when they need medical help and are intelligent enough to seek
it when needed. If you are like me, the less I have to seek medical
attention, the better off I am.


Give me a break, do you honestly think I care I had to sign a piece a paper that I was leaving against medical advice because I did not want to stay for a freakin stress test the next morning. The way I saw it the hospital just wanted to get more money from my insurance for an overnight stay...I HATE STAYING IN A HOSPITAL. Did they really think I want to be poked and bothered every four hours when my vital signs were stabled, just to have a stress test the next morning? Hospitals recommending and insisting on unneccesary hospital stays is one of the problems with our health care system.

I experienced my third Immediate Post Injection Reaction after my Copaxone injection. Seconds after pulling the needle out of my thigh and grabbing the cotton ball to stop the blood that oozed from the injection site. A volcano erupted inside my body. It felt as if the medication exploded. I literally felt a burning rush travel up the top half of my body and slowly flow back down to the soles of my feet. My eyeballs rolled backed as my chest tighten with every rapid heartbeat. I was scared out of my mind, I could not breathe, thank God, my husband felt something was wrong and came upstairs to check on me.

As he dialed 911, I prayed for calmness and not to fear what was happening. I knew in my mind it was an IPIR experience and I held on to the belief no one ever died from one. The grip on my chest eased to the point I could breathe a little better. I thought my experience was about to be over until the severe itching and whelps start popping up over my body and a strange taste entered my mouth.

I start cursing living with MS and the medication that caused the hell I was living now. I could not understand why this was happening to me again. I thought IPIR’s were so rare that the odds of me having one again were slim to none. Well, the joke is on me. I was told that when I experienced my first one in 2007, yet I had another one months later in 2008.

On the transport to the emergency room, my tongue felt as if it was swelling and the itching made me want to peel my skin off. The EMT feverously injected an IV in my veins and shot me up with Benadryl. By the time I made it to the ER, I was drowsy and in a better state of mind. Hours later after an infusion of Solu Medrol, my body felt like its regular multiple sclerosis living self. The ER doctor asked how I felt and I told her the truth, she informed me that my test came back good and my vitals were stabled and I could go home after she consult with the ER doctor in charge.

I could have been knocked over by a feather when she came back in and said, "We want to keep you for further tests." "Why!", I asked. She said, "There are other test that they wanted me to take in the morning to check my heart." There was no need for me to stay to take further heart tests the next day, so I refused to stay. I explained to them, "I have a cardiologist and I have been given all required test because of my family history last year in May. You asked how I feel and I told you I feel much better than when I arrived, my vitals are stabled, and the heart enzyme blood work came back indicating all is well, therefore, there is no need for me to stay overnight for further heart testing in the morning."

I kid you not they were trying to put the fear of God in me. They went on and on about the chest pain I had with the IPIR and it was in my best interest to let them perform further testing because of family history. I was getting annoyed with their persistence about staying in the hospital. Why it is medical personnel do not really listen to patients who are in tune with their health situation and body is beyond me. Did they not hear me! When I said, “I recently had the tests they wanted to perform done by my own cardiologist and I will call him first thing Monday morning to follow up on why the wanted me to stay in the hospital.” The last place I wanted to be was in a hospital and my birthday was coming up Sunday, when I knew all was right with me again.

This may sound strange, but I was elated and confused knowing I was not going to die after having an IPIR. I was and still am confused on what to do about a disease-modifying drug to slow down the progression of my multiple sclerosis. Should I continue taking Copaxone? I know Copaxone is working for me because I have not had any new brain lesions and my exacerbations have been less lately during the years I have been taking Copaxone. Unfortunately, the IPIR reactions are worse each time I have one. I am obviously, in that rare percentile that experiences IPIR while taking Copaxone. It is a terrible experience and I do not like going through it, but who is to say I will not have worst experiences on my other three choices of a DMD. I thought about not taking anything at all, but after talking with my Dad. I promised him I would continue taking a DMD for my disease For now, I am going to take some time off from taking my daily injection until I make a decision on what I am going to do.

Anywho, all is well for now and I enjoyed my birthday with my family at home :) I will make a decision soon, but I am leaning towards staying on Copaxone because at least I know what it will do to me unlike the other DMD's.

Thursday, June 25, 2009

Angel of Death Hit Hard This Week



Wow, my heart was saddened to hear about the death of my cousin Lorraine “Cookie” Union Monday June 22, 2009. Followed by the death of Ed McMahon from the Johnny Carson Show Tuesday, June 23, 2009. Now today June 25, 2009 the death of two icons in the entertainment industry...Farrah Fawcett of Charlie’s Angel and Michael Jackson formerly of the Jackson 5.


May you all Rest In Peace.



Below is a picture I took of Michael Jackson when I spent a summer in California. My Uncle bought some of the best tickets in the arena for me and my cousins to see the Jackson 5 in Sun Valley…of course I was the teenager in 1975 with the best summer story after being that close to the Jackson 5. That is Michael behind Marlon :)


Monday, June 22, 2009

The Angels Took Her Home






I hate those early morning calls. It is never good news; I think I am still in shock. I did not believe my sister when she said, “Cookie is dead.” My heart felt like it broke into a million pieces. No, it cannot be, not my Cookie, I just talked to her Saturday. I have so much to say about my first cousin Cookie, but it hurts too much.

Her last words to me was Saturday, June 20, “Hey Deb, I love you” my last words to her was “I love my Cookie.” Those words are what is giving me some strength this moment. We do not have a guarantee that we will here or see a love one again. Therefore, end your conversations with “I LOVE YOU”.. Cookie died from a massive heart attack June 21.


My Life Reflections (In Cookie's Own Words)...click on image to read it







RIP...Lorane “Cookie” Union
I will miss you, but I will always remember the FUN TIMES.

Sunday, June 21, 2009

My DAD...It's Your Day



I am the woman I am today because of my Dad. He is the one who instilled in me the importance of LOVE. It is strange how he gave me good advice on LOVE :-(, but did not take his on advice when it came to my mother.

My world was devastated at the age of 16. My mother filed for divorced and he could never come back to the house I call home. Yes, I acted out, but because he stayed in my life outside of the home, we once shared. I continued to have a Father’s Love to this day.

Any man can be called a Dad, but it takes a REAL MAN to be called a FATHER…




For example, I married a REAL MAN.

He gave and gives a father's love to my daughters when their DAD could no longer have their mother after a divorce.

He never took away his love from his own daughter after his divorce.

He went for custody of his daughter when her home life was not the right environment.

He is greatly responsible for three beautiful little girls, who matured into three beautiful, intelligent, strong, loving, compassionate young women.

Most of all, he is a man that knows how to treat and love the woman who shares his love.

Today is not only Father's Day...today we celebrate nineteen years together.



Happy Father's Day and Anniversary MY LOVE!

Held Captive Only If You Allow It



Summer is a beautiful time of the year. Lots of activities and events are planned for outdoors. Unfortunately, when you live with multiple sclerosis the heat during the summer can hold you captive if you allow it.

I was looking forward to attend an annual political picnic Saturday. I knew it was going to be hot, but I was not going to let that keep me from trying to make the event this year. The heat was extreme, I could not last any more than getting out my car and making it to the grounds. Oh, well that is life living with MS. I felt good trying it instead of staying captive in the house because of the temperature outside. There is always next year.

It can get depressing when you try to attend an outside function and the heat is too much for you to enjoy it. Instead of getting depress always have a back up plan or two if you have to leave an outside event because of the heat. Enjoy every day of the summer month regardless of the heat. Plan accordingly by monitoring the weather report.

The weather report for next week here is 97 degrees across the board, with the heat index well over 100. I already planned accordingly :)


I AM NOT GOING TO LET THE HEAT OF THE SUMMER HOLD ME CAPTIVE IN MY HOUSE…HAVE A WONDERFUL SUMMER…I PLAN TO!

Thursday, June 18, 2009

Blame It - Jamie Foxx- BARACK OBAMA SPOOF





With all that is wrong in this country, I will have PATIENCE for President Obama to evoke CHANGE. He is only one man it is the men and women on Capitol Hill who we the American people should hold responsible if change is slow in coming or does not come at all...Remember The Republican Party talking piece want him to fail. Hmmm, there is something wrong with the Americans who hang on every word of an addict that speaks for the Republican Party?

President Barack Obama did not create this mess in America, but they the Republican Party want people to believe its President Obama’s fault. Let us not forget it was them, the Republican Party in charged for the last eight years and rubber stamped the Bush Administration. I also blame men and women of the Democrat Party for not putting up a fight to the bullying of the Republican Party.

To sum up opinion BOTH PARTIES are the blame for the mess the United States is experiencing. Capital Hill has been bought and paid for by the super rich and big businesses. I personally am ready for new, young, intelligent, uncorrupt faces with new ideas on Capital Hill who is not afraid to take on the thieves that robbed America blind.


click here...I endorse Blame IT-Jamie Foxx-Barack Obama Spoof

Wednesday, June 17, 2009

Americans Are What Is Wrong With America…




When is it going to stop…?

My healthcare coverage was the best to have, but over the years, benefits are slowly disappearing, while my premium is slowly rising. Out of pocket expenses were something I did not dread, but I dread going to get a prescription. Co-pays are steadily increasing. So far, I am still one of the fortunate ones to afford my drugs to fight MS… What about the ones who cannot afford to take the expensive Avones, Beastron, Copaxone, Rebif, and Tysabri to slow the progression of multiple sclerosis.

DMD’s cost more than what many Americans make a year, mine in particular cost $1700.00 a month. I will not be surprise if day come when my health insurance carrier find a way for me to pick up most of that cost. If that day comes, I will be like many other Americans deciding between purchasing my prescriptions over purchasing food to live.

I am pissed off; I am sick and tired of our legislators the Democrats and Republicans bullshitting when it comes to my life. The Dems and the Repubs want American people to believe they are working hard in our best interest to fix the healthcare crisis.

I do not give two rats asses which party comes up with a solution for the healthcare crisis here in America. The writing on the wall started when HMO’s came to America in the early 80’s. Healthcare has been changing and rising at the disadvantage to the American people since the HMO white horse rode into a town near you.

To fix the healthcare crisis here in America, it is time for Americans to demand the same coverage Congress receives. I plan to write my representatives demanding the opportunity to have the coverage they receive. It is time for all Americans to DEMAND IT!

I remember then candidate for President Obama saying during his campaign, "Americans deserve the same coverage offered to Congress." Therefore, if Congress is having a problem putting together legislation to offer us the same coverage they have because of the Democrat and Republican bipartisanship bullshit. The American people need to remind them whom they work for during their election year, and VOTE their asses out of office, and put some fresh blood in...which is what Americans should do to kick start fixing what is wrong in America!

Remember they are in Washington to be working for us and not for the Insurance and Pharmecutical industry poiitical donations and perks.

Health Care for U.S. Congress

Saturday, June 13, 2009

What Is Worse Than A Winter Cold?



ANSWER

A Summer Cold!


It has been years since I had a cold, I guess it is a cold. It could be allergies or sinusitis. Any who, whichever it is, its time to take it to the doctor. Over the counter meds are not doing squat.

I can’t breath out of one of nostrils, the other nostril is working at 75%, my throat is itching, my ears are ringing, coughing, one minute I am cold, the next I am hot, but most of all...

I CANNOT SLEEP. When I lay down, I have to get back up because what will not come out my nose is choking me.

Hubby think I should go see my doctor ASAP…of Dr. BlindersOff think she can wait until her physical appointment Tuesday.

Friday, June 12, 2009

My Condolences




Words are not enough to comfort a mother when a child dies.

This MS candle burns for you Sherry. My prayers and thoughts are with you. May you find the strength to carry on.

Tuesday, June 9, 2009

Vitamin D Deficiency




I finally had my Vitamin D level checked and to my surprise, I am severely deficient in Vitamin D. The reference range for Vitamin D in the body is 32 – 100. Hell, my range was a 9, I was damn near depleted of Vitamin D.

A cousin of mine who is in the health nutrition industry brought the importance of Vitamin D in our system and the importance of African Americans to have their level check to my attention about a year ago. The reason being African Americans do not absorb the sun natural resource of vitamin D. She also mentioned, a lot of the pain I experience could not only be from multiple sclerosis, but also from the lack of Vitamin D.

My MS rollercoaster has been taking me for a ride. It was time to find out if there was something to this Vitamin D after reading about it. I did not have nothing to lose if I had to take another pill and if taking pills for Vitamin would help my cause living life with MS. I was all for it.

When my results came in, my doctor immediately but me on 50,000 ui of vitamin D a week, I thought I was going to have to take a handful of pills to get that much vitamin D a week. Fortunately, our good ole pharmaceutical companies make a 50,000 capsule and I take one a week.

It has been four weeks now and I have to admit I feel a lot better. I am experiencing moderate instead of severe pain now. That severe anxiety I experienced that damn near drove me insane has disappeared. Cymbalta helps, but I notice a tremendous difference since I have been taking vitamin D.

Although it is wise for African Americans to get their Vitamin D checked, I would suggest everyone who have health problems to have their Vitamin D checked. The medical community is doing more research about the harm of having a vitamin D deficiency. Instead of trying to blog about the different ways a lack of vitamin D can effect your life…check it out in your spare time on the provided links below.

Vitamin D Deficiency

Vitamin D Deficiency Symptoms

Vitamin D and Mental Illness

Why Vitamin D May Be A Hidden Epidemic

Vitamin D May Prevent Multiple Sclerosis

Monday, May 4, 2009

Catching Up…Sorry About Being Away So Long



Thank GOD School Is Out

April 27 was my last day of class...NO MORE Linear Equations, Scientific Notations, Powers, Polynomials, and their relatives.

Blame them for keeping me from blogging :)





I Hope This Is Not My Last Mid-South Chapter MS Walk

I was not going to walk this year because I was upset the walk was moved from Shelby Farms to H. W. Cox Park in Collierville. I had a change of heart and decided to participate two weeks before the April 4 walk in Collierville. I formed my team and set a goal to raise $500, I thought that was reasonable because of the economy. That goal was achieved less than a week so I raised it up to $1000.00. I am happy to say my team and I raised over a $1000.00 for the MS Mid-South Chapter.

Unfortunately, I am sad to say moving the walk to Collierville was not the same as having the walk in Shelby Farms. It was very noticeable that the attendance was not the same (I guess others felt how I felt in the beginning). The atmosphere at the Collierville walk uninviting and unfriendly. If the Mid-South Chapter decides to continue the MS Walk in Collierville, this year will be my last year participating, but I will continue to donate to the MS Society.

The Mid-South MS Walk always been at Shelby Farms before Collierville start having a walk on the same day about 2 or 3 years ago. The Chapter excuse having it at Collierville’s H.W. Cox Park was it did not cost them and it cost $3,000.00 to have it at Shelby Farms. That is poor excuse to take it away from a traditional site. Free is not always best…less teams signed up, less volunteers’ and less vendors participated. ..most importantly LESS MONEY WAS RAISED.

P.S.

You all know I did not hold back on the survey sent to me by the National MS Society.




NO THANKS DOC

I am no doctor, but in my opinion having morphine entering your body 24/7 is worst than popping a Lortab as needed. I am so use to having pain and I now have a very high pain tolerance, but that tolerance level is penetrated every day. Lortab is prescribed 1 tablet every 4 to 6 hours I take no more than 7 tablets a week. One tablet a day to keep the pain at a level I can tolerate.

I like my neurologist, but I disagree with her preferring to have me on morphine than having me take Lortab, as I need it for pain. She seems to believe Lortab is more addictive than morphine. Hmmm, am I missing something here, I wonder what is the hang up with my neurologist and Lortab.

I am the one who lives with the freaking pain and I should have a say in what I choose to put in my body. There is no freaking way I want to go back on morphine and go through the withdrawals I had when I decided I no longer want morphine entering my body. Hell, It was me having heart palpitations, severe constipation, and feeling as if I would stop breathing any minute while on morphine. Yes, I felt no pain, but I was paying a high cost not to feel...A DECISION HAD TO BE MADE! I prefer to feel than to stop breathing at any moment. The choice is mine and I will make that very clear at my next appointment or I will find another neurologist.


Finally...



My Baby Girl is moving back home. She is not moving back in the nest, she is moving to be near her Mom, Pops, and sisters for a couple of years before she head off to Harvard for her Masters and PHD. I am happy as a kid in a candy store!

Saturday, March 14, 2009

Why I Walk:



A Mother's Love


PAIN does not begin to describe the physical beatings MS delivers to my mother on a daily basis. PAIN does not begin to describe how MS mentally torments my mother on a daily basis. But HOPE, COMPASSION, L.O.V.E., DETERMINATION, DEDICATION, PERSISTENCE, COURAGE, STRENGTH, HUMILITY, FEARLESSNESS, AWARENESS, and MOTIVATION describe the characteristics she embodies that enable her to reject the condemnation that MS tries to inject in her spirit.

So many times she could have given in to the PAIN, and so many times she has DECIDED to fight - to not let this disease define her. That's the god in her. Her resilient spirit is relentless in its effort to combat the detrimental effects of MS, and she is winning. She is a WINNER. She loved me when I didn't love myself. She cared for me when I couldn't care for myself. She consoled me when I couldn't console myself. She felt my pain when it was too much for me to bear. She protected me when I couldn't protect myself. She is a part of me because she taught me how to be a woman. She taught me how to love. She taught me how to care. She taught me how to be courageous. She's teaching me how to live in victory. She has the victory. I need her. And, if she ever needs me, I'm here. Thank you Mother...for loving me in spite of me. I LOVE YOU.




My daughters and husband walk with me every year for the National MS Society Mid-South Chapter, but this is the first year my daughters did a personal page when they registered to walk...the above was written by my baby girl. I am blessed that my girls and husband give me my flowers while I am living..my heart is smiling.

Thursday, March 12, 2009

Hit the Nail on the Head

I do not usually take from another blog, but this is a must listen to interview…Taken from Autoegocrat at the Flypaper Theory.

Sunday, March 1, 2009

Disabled Not Dead

ANNE



When Someone Deeply Listens To You
it is like holding out a dented cup
you've had since childhood
and watching it fill up with
cold, fresh water.
When it balances on top of the brim,
you are understood.
When it overflows and touches your skin,
you are loved.
When someone deeply listens to you
the room where you stay
starts a new life
and the place where you wrote
your first poem
begins to glow in your mind's eye.
It is as if gold has been discovered!
When someone deeply listens to you
your barefeet are on the earth
and a beloved land that seemed distant
is now at home within you.


by — John Fox


You are in my prayers...Blinders Off

Monday, February 16, 2009

It Cannot Get Worse…So Why Not Look Into It




“D”, I was reading this article on vitamin D (and others) and it keeps coming up that African-Americans can be deficient in this vitamin and can develop multiple sclerosis and other autoimmune diseases. You should have your blood level checked. Because our skin is dark, we re usually 100% deficient in this vitamin & and have an array of ailments as a result. I had mine checked and I am deficient and my doctor placed me on 6 drops daily. It has made a huge difference in the pain I was feeling in my bones.

The website is not just for African Americans it has some interesting information on it..Click to check it out.

When I see my neurologist for my scheduled February 27, appointment, I am requesting to have my blood drawn to check my vitamin D level. I have taken myself off a many harmful prescription medication to control symptoms of my MS. Could it be possible some of what I feel could be from vitamin deficiencies mainly vitamin D. I would prefer to take vitamins to control some of my ailments than harmful prescription medication.

It cannot get worse…so why not look into vitamin deficiencies.