Monday, June 29, 2009
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
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
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
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!
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
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
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
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
Tuesday, June 9, 2009
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