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.