Living with multiple sclerosis is like a box of chocolate. You never know how it will affect you the next minute, hour, or day. I refuse to let MS control my life...what about YOU.
Tuesday, August 28, 2007
President Bush Is Wrong For Denying Children Healthcare
Presently I have good health coverage, but each enrollment period I brace myself to see what changes my insurance carriers will make. I just found out this year, my insurance no longer pay for routine eye exams. What pisses me off more is how private insurance companies are slowing hacking away at the medical coverage Americans get.
It also angers me that President Bush thinks so little of American children when it comes to healthcare.
UPDATE
Three generations of activists tried to teach President George W. Bush a new song about health care today. Flanked by congressional leaders, AFL-CIO President John Sweeney and members of the Alliance for Retired Americans,
A group of children kicked off a Capitol Hill press conference today singing:
I don’t want your millions mister.
I don’t want your car and wealth.
All I want is SCHIP, mister,
So kids like me can have good health.
Monday, August 27, 2007
I Am Saying No To Tysabri
I have been contemplated on trying the multiple sclerosis therapy Tysabri. I actually convinced myself I was going to have my first Tysabri infusion in September. While I was in the MRI machine August 22, I thought about how miserable I felt with the severe nausea and vomiting I've been experiencing from trying a new drug. I was also frustrated when the MRI technicians couldn’t get the IV in my veins to shoot the dye in my system for the second part of my MRI test. That was a first, they had to call a phlebotomist to insert the IV and she had trouble. My motto is if you do not get it on the second try leave me the hell alone.
My veins are gone in my arms, the surviving very small vein in my right arm is hiding and running when a needle approaches it now. The veins in my hands had start running and the ones that didn’t run when I had to have an IV inserted became inflamed to the point were I can not be stuck there again. Call me a coward, but I am not ready to have an IV needle inserted in my chest wall to receive a Tysabri infusion on a monthly basis. I am also not ready to risk possibly contracting PML and suffer the side effects that come with taking Tysabri.
Today I am saying hello to Copaxone again. My MRI’s shows stability in the scarring of my T1 and T2 area. That tells me Copaxone has been slowing the progressing of brain lesions for me. I have been taking daily shots of Copaxone for years and had become accustom to the pain and the sometime injection site reaction after taking a shot. Although some days are worse than others I prefer to stick to a MS therapy treatment that I know is working for me. My stomach, arms, thighs, and hips have enjoyed not being stuck everyday for the last thirty days, but a girl has to do what girl has to do.
Sunday, August 19, 2007
I Could Be Wrong
I appreciate and I am thankful for the family and friends support I have when it comes to my health. I understand that they are scared and worried for me because of how my health changed this year, I am too. I have to and I am making my own decisions on how I battle multiple sclerosis, my doctors support the approach I choose to take, but in the end it is my decision. I know in my heart the day I die it will be from a drug I take to control the symptoms of my multiple sclerosis not the disease itself, but you know they will say death by complications of multiple sclerosis. I have a right to be wrong...
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Friday, August 17, 2007
Here I Go Again...
Until Montel Williams,advocate organizations and average citizens continue to help support the passage of bill H.R 1717 (Truth and Trials Act) passed and help get Tennessee twin medicinal marijuana bills H.B.0486and S.B. 0641 passed. I and many others have no choice but to continue to take man made prescription pain medication with unbearable side effects that can be potentially deadly to get relief from the severe pain while living with a chronic illness with no cure.
I thought the Duragesic morphine patch was my answer to be rid of the pain and nerve tingles. I told you what happened while wearing the patch. Today I am to start taking Kadian 20mg which is a morphine capsule. My doctor logic is the patch was dispensing morphine in my body 24/7 and it became too much for my body to handle. By taking the morphine capsule I can skip a day or two between dosages to keep the severe pain away.
I am not looking forward to ingesting morphine again, but I will if my pain return to this point in my life again. For the moment I believe I still have enough morphine in my system where I can control the intensity of the pain with Lortab. I am hoping once I start the Tsyabri infusion in September, there would be no need for me to take morphine. I am hearing good things about Tsyabri; I hope it works for me. If it don’t I guess I will be back to injecting myself with Copaxoneeveryday to slow the progression of lesions in my brain that is slowing destroying my central nervous system.
Wednesday, August 15, 2007
How Much Has Changed
I am average citizen who is sick and tired of the bull**** in our country. I blog about living with multiple sclerosis, but I have always had a lot on my mind and had nowhere to vent. When I first start blogging, I was pissed at the Democrat Party and the good old boy leadership on all government levels. I worked my ass off during the elections in 2004, just to continue to be disappointed on the local, state, and federal level. I will continue to fight and be a voice in my community for progress, but I am elated to witness the battle being fought through the blogs on a national level.
When I began blog jumping I was questioning why in the hell should I continue to be loyal to the Democrat party as a black person? I came across some fantastic white liberal blogs and black independent blogs whose main focus is politic, politicians, and social ills in our country. I’ve learned a lot from reading the blogs and enjoy knowing there are other people who are like minded on politics and social ills. I don’t feel as if I am alone anymore on how I feel about issues and politics. Blogs just might be the grassroots effort to conquer some of the social ills and problems that are still plaguing blacks in our country. Blogs are also a means for average Americans to get the truth out about certain political figures and help kick them out of office.
It’s getting harder to tell the difference of a Democrat from a Republican when it comes to being black and social issues in America. I definitely now consider myself an independent that leans liberal. The Democrats are no longer guaranteed my vote, a Republican (which I do not see one anytime soon) just might get my vote one day. The Green Party is looking pretty good...maybe that is what is needed in this country a third party.
How much has changed? (IMO) NOT ENOUGH
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When I began blog jumping I was questioning why in the hell should I continue to be loyal to the Democrat party as a black person? I came across some fantastic white liberal blogs and black independent blogs whose main focus is politic, politicians, and social ills in our country. I’ve learned a lot from reading the blogs and enjoy knowing there are other people who are like minded on politics and social ills. I don’t feel as if I am alone anymore on how I feel about issues and politics. Blogs just might be the grassroots effort to conquer some of the social ills and problems that are still plaguing blacks in our country. Blogs are also a means for average Americans to get the truth out about certain political figures and help kick them out of office.
It’s getting harder to tell the difference of a Democrat from a Republican when it comes to being black and social issues in America. I definitely now consider myself an independent that leans liberal. The Democrats are no longer guaranteed my vote, a Republican (which I do not see one anytime soon) just might get my vote one day. The Green Party is looking pretty good...maybe that is what is needed in this country a third party.
How much has changed? (IMO) NOT ENOUGH
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Labels:
Democrat Party,
Green Party,
Republican Party
Tuesday, August 14, 2007
Our Government Need To Do Right When It Comes To Legalizing Marijuana
It is proven fact marijuana for medicinal purposes works when it comes to pain, nausea, and spasticity oh I forgot and vision problems. The real reason why our legislatures will not legalize marijuana for medicinal purpose is because of the effing big drug companies. They rather keep prescribing medications that is harmful to a person than to legalize marijuana for medicinal purposes.
I Had To Tell
My nausea and vomiting became so severe; I had to tell before my next doctor's appointment. Puking out of my nose and mouth at the same time with my ear drums feeling as if they were going to burst is reason enough to tell. I was told to immediately take off the patch. The patch took my pain and tingles away, but the side effects were not going to get any better because they became severe in my third week. Now I have to wait and find out what medication my doctor can give me for my ms pain. I hope I have enough morphine in my system before the severe pain return.
The Heat Is On
Multiple Sclerosis patients are not the only people suffering from the extreme heat this year. Because of the heat it seem appropriate to remind multiple sclerosis patients and anyone wanting to stay cool in hot conditions about products that are available to stay cool if you have to be out in this extreme heat. Take a look at the under vest and check out Body Cooler for products you can wear to stay cool in this extreme heat.
Sunday, August 12, 2007
Big Brother 8...The Appeal Is Gone
Evel Dick deservingly and rightfully calls Jameka and Amber out for the people they are. Both of them are hypocrites. To call someone’s Momma a bitch and then speak of God in the same sentence is abominable. As for Amber (excuse me, I just burped) wearing her ear plugs and praying out loud for the cameras speaks for itself. The both of them are a joke in this game. The key word here is game…God is not playing this game and it’s high time they leave God out of it.
After what happened in last week rigged show and watching Jameka and Amber come into this game claiming to be Christians is nauseating. Tonight was my last night watching Big Brother 8. If they didn’t come into this game wearing the Christianity banner it would not have left such a bad taste about their actions.
Jameka and Amber need to read the following
beautiful and well written poem
Christian ~by Maya Angelou~
After what happened in last week rigged show and watching Jameka and Amber come into this game claiming to be Christians is nauseating. Tonight was my last night watching Big Brother 8. If they didn’t come into this game wearing the Christianity banner it would not have left such a bad taste about their actions.
Jameka and Amber need to read the following
beautiful and well written poem
Christian ~by Maya Angelou~
Saturday, August 11, 2007
To Tell or Not To Tell
I have a dilemma, since I have been wearing the morphine patch the last three week. I have experienced absolutely NO PAIN, but the side effects I’ve experienced might be cause enough for my doctor to take me off the patch. On the very first day of wearing the patch my PAIN went away. My problem started later in the day of my first day wearing the patch, I experienced severe itching, the feeling of being high on drugs, slower heart beat and nausea without vomiting. For my itching and nausea feeling
I take medication for it. All of my symptoms left except for the itching it lingered around, but not as severe as it did the prior two days.
One patch stays on for three days; because my pain was gone I did not put a patch on after taking it off on day three. I called my doctor and told her of my experience and I asked if it was okay not to wear the patch since my pain was gone and only put it back on when the pain return. She was concerned about the severe itching and told me I might have to come off the patch, but I have to wear the patch continuously to keep the pain away. Honestly she was right because my pain immediately came back after I tried to go a day without the patch.
All of the side effects symptoms disappeared until this week. The feeling of being high on drugs never returned since it first happened, but the severe nausea was now accompany with severe vomiting. The nausea and vomiting was not an all day thing, but it reared its head whenever it wanted to. The severe itching comes and goes also, but the mother of all the symptoms is when I had a nightmare that was scarier than watching Nightmare on Elm Street. I had a vivid nightmare where I was literally puking up my guts. To think about the nightmare sends chills through my body, come to find out terrible dreams are also a side effect of the drug.
After having that dream I was ready to take the patch off myself, but living without the pain was the reason why I didn’t. My dilemma is if I tell my doctors about the nausea/vomiting experiences, the nightmare, and the severe itching she will probably take me off the patch. That is why I have not called her to tell, I don’t want to tell because life is GREAT without PAIN.
I have decided not to tell on myself until I go see her August 24. If she takes me off the patch I hope she has an alternative solution to fight the pain.
Thursday, August 9, 2007
He Is Not Lying About The Press Release
He is telling the truth about the press release from The Memphis Baptist Ministerial Association. One of his anonymous commenter said the follow:
Quote, “you should only post what you know to be true. the intelligence of some memphians white and black is the real reason we cannot grow as a city. but the truth will win in the end, just keep on spreading lies, it makes it easy to know who to believe.” Unquote
This past Sunday was the first time I was bothered by what my Pastor had to say. I was not bothered by his message from the bible; I was bothered by what he said after he gave his message from the bible and wanted to speak to the congregation about the 2007 Hate Crime Bill (H.R. 1592)
He got many in the congregation riled about bill H.R.1592 saying he could be arrested if he talked against homosexuality in the church. After he said that he went into a fiery rant about gays and lesbians. He smoothed his blows to the gays and lesbians in our church by saying, "It is not the person he is against, but it is their sexual orientation he is against." As he went on with his stance and support of the press release the ministers received, I was wondering how the homosexuals in our church were feeling at that moment. I have and I am sure many others have homosexuals in their family tree somewhere. Because of their sexual orientation does that mean we should disown them or it should be acceptable for them to be criminally victimized in our society? It is not MAN place to judge them, the God I know is a forgiving God.
I finally called him the following Tuesday because I believed it was wrong of him to miss-informed the congregation about bill H.R.1592. I asked him, “Did he read the bill”, and he replied that he did. That is when I asked, “Why would he stand in the pulpit and say he could be arrested if he speaks against homosexuality, because no where in bill H.R.1592 does it says religious leaders will be jailed for speaking against homosexuality.” He finally admitted and stated, “A press release was sent out to ministers about bill H.R.1592 with a pastor in full cloth handcuffed and being taken to jail because he spoke against homosexuality in his church."
In my opinion, it is wrong for men or women who lead a church to miss guide their flock. There are many people in the church who follow their spiritual leader blindly without thinking for themselves. Hypocrisy in the church is rampant and people in the church need to realize the person standing before them in the pulpit is a human being not God himself. I personally go to hear the word and message from the bible and listen to the message in the songs from the choir. My relationship with God is not controlled or depended on my pastor. I am secured in my faith not to be lead blindly by MAN and many people in the church need to distinguish the difference of who is the final judge of how they live their life.
Finally, Congressman Steve Cohen is a legislator who listens to the people. He doesn’t represent my district, but that did not keep him from responding to a concern I had. When he decide to run for the Senate he definitely has my vote. I hope his critics are not successful in removing him because he is not black. Blacks need to be careful of some blacks who want to represent them in office. Harold Ford had that position for a long time and he damn sure wasn't listening to constituents in the district. His actions and the actions of his other Ford family members in public office proved they were out for themselves. In this case the title of a new show on BET aimed towards Blacks is an appropriate closing to this post “We Got to Do Better than That”.
update
I removed the name of the blogger and his site because the sight has become too unbearable to read. There are more interesting and informative sights in the blogosphere to read instead of wasting my time reading his tabloid post and flip flopping opinions.
Saturday, August 4, 2007
Congratulations Baby Girl
The last time I had a post congratulating my youngest daughter is when she graduated cum laude from Vanderbilt University in May. I was one of many proud mothers who children graduated college this year. Only God knows the quiet stress I’ve been under with her turning down Pfizer after they wanted her so bad they bent their own rules to let her intern for three years instead of two.
She went from one extreme to another. No matter what she wanted to do in life I knew she was going to excel. Going to school was her job for many years and she always was the best of the best in her academic employment. I believe she was fretful about not being in school since that has always been her job. She finally decided to attend a competitive one year graduate program at Vanderbilt this fall. We supported her decision and told her there is nothing wrong with continue her education, but we could not foot $50,000 for a one year grad program. She would have to take out student loans if that is what she truly wanted to do.
I also gave my opinion that it didn’t make much since to take out a loan for that much money for a one year grad program when she could pay for grad school from her earning from a job or the job she get may have education benefits that would pay it for her. Well, I am happy to say, today she received a job that is better than the one she was offered from Pfizer and it is with a company where she will be using her educational background along with the experience she received from Pfizer.
As a mother I am HAPPY and PROUD that the last of my girls are working in their chosen field and out of our pockets. I will be making phone calls to the insurance companies to get the lower rate for spouses only :)
Update:
Come to find out my daughter did the right thing turning down Pfizer Pharmaceuticals.
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