Tuesday, July 31, 2007

An Interesting Article About MS

The CA has a story about Genes tied to increase in MS risk that could lead to new drugs in 5-10 years. The paper also mentioned the findings appeared in the New England Journal of Medicine .

Monday, July 30, 2007

Playing Doctor

Staying off the patch didn’t last long. My doctors didn’t like the decision I made about taking the patch off just because my pain was gone. To make a long story short it is in my best interest to keep wearing the patch. They did tell me the nodding I experience will decrease the longer I wear the patch. In the first week I only experience the nausea, vomiting, and itching for two days. I also have something I can take if those symptoms arise again. I guess I better listen to the professionals and stop playing doctor.

Therefore, if I am feeling impaired I will stay my behind at home until I have someone to drive me. It sucks, but I have to do what I have to do.

Sunday, July 29, 2007

I Do Not Miss You

Since I have decided to try Tysabri I have to stop injecting myself with Copaxonefor 30 days before I can start the Tysabri infusion.

It feels DAMN good not give myself a shot everyday.

I Know A Change Is Going To Come
For Me Living With Multiple Sclerosis...

My Week On The Patch

I was very skeptical of the morphine patch Duragesic 25mcg because all I could envision is me drooling from the mouth and nodding in and out of conscious. When mild painkillers stop working to stop my pain, I was prescribed several addictive type pain killers such as Percocet and Lortab 10mg. I could not tolerate Percocet, but I could tolerate Lortab 10mg. To not become dependent daily on Lortab I only would take them when my pain level was past a 10 according to the medical pain chart. When my pain is not past a 10 I do not take Lortab. With my recent episode of sever pain Lortab did not give me any relief, therefore I was prescribed morphine patches.

To my surprise I did not drool, but I did nod in and out of conscious. My nodding in and out was not like I envision, it mainly happened when I was not busy. The first day on the patch I felt like a brand new woman, I felt like I was normal, I had absolutely no pain, I felt like the vigorous woman I was before I became sick. I embrace that day feeling like I could conquer the world. Then reality hit me, I became concern about becoming dependent on the patch, I quickly dismissed the reality of being dependent on the patch as long as I continued to feel the way I was feeling.

I experienced nausea, vomiting, itching and sleepiness on my second day wearing the patch. I became a little depress because I thought about how good I felt the day before. I did not stay depress long, I knew there were side effects and I just prayed the side effects did not last long or become so bothersome to the point I had to take the patch off. I took Meclizine 25mg and Hydroxyzine HCL 25mg for the nausea, vomiting, and itching. Although I experienced all of that on my second day I still felt great because I was PAIN FREE for two days in the row. In my mind I could live with the nausea, vomiting and itching as long as I did not have PAIN. Fortunately, the prescriptions I took to combat the nausea, vomiting, and itching worked and I no longer felt those symptoms.

I went seven days without having any PAIN, therefore, in my book the patch work if you suffer with severe pain. In my opinion the downside of using the patch is your body is continually receiving morphine 24/7. My husband brought something to my attention, he said, “Although, you are feeling good by not having any pain and you are functioning, you have drugs in your system that can cause you to nod off. You need to have a driver because you can nod off while driving.” We debated the issue and I realized he was right. I also realized I couldn’t continue to wear the patch daily like my doctors prescribed it. I had to treat the patch like I treat the medications I have that can become addictive. I only take certain medications the doctors prescribed to combat the symptoms of my multiple sclerosis on an as needed basis.

As of today I took the patch off. The severe pain I experienced the past several weeks is gone. I am no fool to think my pain will not return because I have been living with constant pain everyday for years. My body built a tolerance level to pain and I learned how to live with that. I have witnessed friends of mine who live with pain, but they are totally dependent on addictive medication to the point were they actually have no life. I on the other hand have a life that I enjoy and I cannot be dependent on addictive medication to continue the life I live.

I now know when the severe pain I suffered in the last several weeks returns I have something to take for it. I guess I will know in the coming days if the patch will become a permanent fixture in my life or a temporary fix when I need it. I pray it will be for a temporary fix.

Monday, July 23, 2007

Letting Go Of My Fear

After injecting Avonex into my muscle weekly for a year and injecting myself daily rotating between my stomach, arms, thighs, and hips for three years with Copaxone. My symptoms are still slowly worsening, but I am still bless because I continue to have use of my legs, eyes, cognitive, and coordination. I’ve lived with pain since the age of 28 and was told I had Fibromyalgia and Chronic Fatigue Syndrome until an MRI and Spinal Tap showed I have Multiple Sclerosis. I honestly believe my problem was Multiple Sclerosis from the start, but that is irrelevant now.

The recent pain I experience would have knocked an elephant down. The pain was in every fiber of my body I became desperate to make it stop. At the present moment I am thankful to be pain free right now, the morphine patch is working.

I never ever ever want to feel that kind of pain again. My Neurologist scheduled me to have Solu-Medrol infusions every month and she also suggest I try the new MS therapy drug Tysabri because it is proving to be effective for MS patients. My hesitation of trying Tysabri was because of possibly contracting Progressive Multifocal Leukoencephalopathy (PML). As I thought about it all of my drugs have severe side effects. Just last year the chemotherapy drug methotrexate started out wonderful for six months before it went toxic. If I was willing to take chemo to feel somewhat normal after being told I could get cancer. Why should I not try Tysabri to give me hope for a better quality of life and the feeling of normalcy? I don’t know if it will or will not work for me all I know is I have decided to try Tysabri as my new drug of choice to slow the progression of my multiple sclerosis.

Thank you Lauren, you were my angel at a time I needed one in my life. Watching you on your video gave me hope for the day when my MS progress to that point. You are a true inspiration!

Tonight I did not inject myself with Copaxone and I will not be taking my schedule Solu-Medrol infusions. I have to be thirty days free of steroids and Copaxone before I can start Tysabri. According to my calculation I should be able to receive my first Tysabri infusion in September. I would be lying if I said I didn’t have fear about the change in my medications and MS therapy drug.

Having HOPE is better than letting FEAR stop me from putting up a good fight living with Multiple Sclerosis.

Sunday, July 22, 2007

The Battle Is Over...No More PAIN

Newscoma said it best for me about Tammy Faye.

Rest In Peace

Friday, July 20, 2007

The MS Wave

July 10
My pain has been off the charts for days and it was becoming debilitating and no medication I have is working. I have a Texas trip coming up and I am feeling like shit. It gets depressing and scary when multiple sclerosis exacerbate because you begin to wonder how long it's going to last.
Pain Pain Go Away…

July 11
I Woke up telling my husband I wouldn’t be able to go with him to Texas if my Solu-Medrol infusion didn’t make me feel better. It’s moments like this when I get pissed off with multiple sclerosis. It is also moments like this when I realize how much my husband really loves me. He told me, “If we have to wait another day to leave then that is what we will do because he meant it when he said in sickness and health”. The Solu-Medrol kicked in 30 minutes into the infusion. I am relieved and ecstatic knowing I am able to join my husband in Texas. I feel so damn good after weeks of intense pain I am going to the salon for a manicure and pedicure.

July 12
Texas here we come! The drive gave me a chance to start reading, “The Five People You Meet in Heaven" , by Mitch Albom. We never go straight to Texas without visiting some good friends in Scott Louisiana. Also, a must have food from Louisiana are deboned stuffed chickens from Hebert's Specialty Meats. Going for a long drive with the one you love make you feel like the luckiest person in the world.

July 13
Before we got started on the activities of the family reunion that evening, we went grocery shopping for the must have foods from Texas to bring back with us to Tennessee. We never can leave Texas without bringing back boudin, blue crabs, zummo sausage, Broussard's links, and seasoning from Tex Joy. Unfortunately, for me the heat index rose to 108 degrees and I was starting to feel the nerve tingles and pain through out my body. I silently prayed over and over for the Solu-Medrol to continue to work, normally I receive three consecutive days of Solu-Medrol, but I only had one.

I made it to the first function of the family reunion that evening; “The Fish Fry” Texans know they can cook...that was the best tasting fish I ever tasted at a fish fry. My pain and the nerve tingles accompany with the feeling of nausea were starting to intensify the Lortabs helped some, but I couldn’t wait for the night to end.

July 14
I was determined not to let how I feel ruin our time in Texas. Multiple Sclerosis is part of me and I choose not to let IT control me. Lately MS been rearing its ugly head with a vengeance, but I am going to adjust to this new wave like I adjusted to the waves that has lead up to this moment. I opted out on the morning activity for the family reunion in order to join everyone during the evening activity. People would not know I have MS by looking at me because on the outside I look like the picture of health. Looks are deceiving and I no longer care what people think when I have adjust my game plan to enjoy my life and do the things I love to do.

July 15
I am proud of myself because I was able to enjoy everyone during the family reunion festivities with only my husband and sister-in-law knowing how bad I was feeling. The only reason my sister-in-law knew I was going through changes is because I needed her help when the nausea I have been feeling finally erupted in a violent way. We were staying at my sister and brother-in-law home after visiting some friends I told my husband I needed to go back to the house, but he didn’t have to stay with me. Texas is his hometown and I knew he had a lot of catching up to do with friends and family.

July 16
I felt a little better after the nausea feeling went away, but the pain and tingling stuck around. I knew I had to make an appointment with my neurologist because of this new wave of intense pain. I was also glad I was going to be leaving the next day because there is no place like home especially if you are not feeling well. I lounged around and I finished reading my book. I also made the decision to pull back on being an activist in my community. A good friend of mine in Texas reminded me I cannot save everyone in need or trouble and I must learn to pick and choose because of my illness.

I believe my entire purpose for making it to Texas was to have the conversation I had with him. On the road trip going to Texas I had a call from a reporter, a cop, and a dear friend who is in a crisis. The reporter is not in a crisis, but the cop is. If the information I received from the cop is accurate his problem will be solved if he handles it the way it needs to be handled. Because of my own issues with the new wave of pain from MS I informed him he will be okay now that he have a lawyer and I can no longer carry his stress, I did all I could do it is now up to him. I basically told my good friend the same thing.

July 17
The skies burst wide opened in Texas and Louisiana and safety come first. We decided to wait until the next day to leave.

July 18
There is no place like home!

July 19
I called my neurologist about my symptoms and the intense pain. I have an appointment for Friday now all I can do is try to unpack our bags and put away all the food we brought back to take my mind off the pain.

July 20
Just as I suspected my illness is progressing, I know the daily Copaxone injections I take daily slows the progression of MS not stop it. I am not in denial on what MS do, I just HATE there is no cure for it. My only resource is to try the various medical treatments they have for MS to live as normal of a life as possible. My Neurologist suggested that I try Tysabri, I wrote a post about that once. I wish I still had it, but theunexpected happened . Until I make my mind up about Tysabri or any other new treatment over Copaxone I have to continue MY research on the different treatments available to me. To help combat the intensified pain I was prescribed morphine patches to wear and told to take Lortab for the breakthrough pain.

I am a little leery of morphine patches, but if it takes away the pain I am experiencing now I am willing to try it. I guess I will have a lot to talk about in the upcoming days. I hope my you tube question is selected during CNN presidential debate. I will talk about that later because its time for me to take my shot.

Tuesday, July 10, 2007

It's About Time

I hope Michael Moore's movie,Sicko, bring more awareness about the Health Care Crisis in America and attention to the Health Care Insurance Industry. People are dying because the Health Insurance Industry has become greedy and are denying necessary medical treatment to it's paying customers.

Monday, July 9, 2007

Still Not My Time...The Choice Is Not Mine To Make

My frame of mind is better. When I opened my eyes I didn’t expect to still be here, but I am bless that I am. I know longer wanted to pick up the gun and shoot myself. The mind living with multiple sclerosis can become so confused to the point all you can think about is ending life.

To ease my pain and suffering I would have inflicted pain, confusion, guilt, and hurt to my family. I lost control of all my rationale thinking during a temporary mental lapse in judgment. I allowed the worsening of my symptoms from the heat
cloud my better judgment. I allowed the heat to imprison me inside my home again instead of living life.

The last time I became that suicidal is when I had to inject myself with the inch and a half needle into my muscle to control my ms symptoms. That was years ago and suicide is one of the serious side effects of Avonex. Of course I was immediately taken off of it and I had been injecting myself with Copaxone since. Copaxone is not known for causing suicidal tendencies, but I will mention to my neurologist how close I came on July 07, 2007. I honestly didn’t have control of my actions and that is something to be concern about. I do not want to take my life by my own hands. Did the heat affect my brain to that point? I don’t know, all I know at the time I felt hopeless and tired of living.

Because of my actions it is time start seeing my psychologist again. He was able to see me today and it was decided it’s important to come back to find out why I suddenly and out of no where wanted to die. If anyone can help me understand my actions on July 07, Dr. J is the one to help me. He is the one who gave me the courage years ago to leave my house, get over fear, panic and anxiety attacks when I allowed my illness to control my life. He is also the one who freed me from my self impose home prison.

I feel embarrassed admitting and exposing to the world that I wanted to take my life July 07, 2007. The embarrassment is admitting I too can become weak and loose control of my rationale thinking. It takes courage to realize I needed help and do something about it and I have always been a courageous person, I just lost sight of it July 07, 2007.

I guess God is not finish with me after all.

Saturday, July 7, 2007

I Am Tired I Want To Give Up...My Fate Is In God's Hands Today

I am struggling with MS depression and I am trying to fight with all I have today. It also does not help living with severe MS pain daily. I am contemplating suicide at this moment. I taken
Xanax,Lortab 10/500 mg , and Ambien 10mg hoping I never wake up. If I do wake up from my drug cocktail, I have beside me a 25 caliber handgun to blow my brains out. Why didn't God take me when methotrexate went toxic in my body June 2006?

I put the cold steel to my temple with my hand on the trigger, but I prefer to go by going to sleep. If I wake up from my cocktail and still feel this overwhelming depression I pray I am thinking somewhat rationally and not pull that trigger.

I am tired of life; I am tired of living with this unpredictable disease. I have comfort in knowing my job has been fulfilled raising my daughters to be independent young ladies. Hell, I use to think I wouldn’t see them grow into the young ladies they are today. I hope they will understand why I want to end it today and pray if I am successful in my attempt they do not blame themselves. I know this is the cowards way out, but the fight in me is slowly disintegrating. I had to be strong for people all of my life, but I feel very weak right now. I have become a prisoner in my own home because of the heat.

I am tired of fighting for people who do not want to get off their asses and make a difference, I am tired of the hate in this world, and I am tired of giving myself daily painful injections to control the spread of lesions in my brain. I am also tired of all the medication I have to take, I am tired of the pain, I am tired of the numbness, I am tired of the nausea, I am tired of the eye problems, I am tired of the tingling, I am tired of being the person that have to put on a brave smile regardless of how I feel, I am tired of feeling dependent on others when I am experiencing depilating symptoms of multiple sclerosis, I am tired of feeling as if I am a burden on my family, I am tired of the unpredictable symptoms of multiple sclerosis I live with everyday, and most of all I am tired of witnessing how fucked up our country is...a dynasty that will fall like all other dynasties in the world.

I lived my life in a way any parent would be proud of their child for and I always treated people how I would like to be treated. Yet I feel I am always bumping my head on a brick wall battling my illness, pleasing others and fighting for what is right. When will enough be enough, today, tomorrow, next week, next month , or next year.

I pray that I am forgiven because what I am doing to myself at this moment is a sin and I pray God forgive me. I also pray that my Mother, Father, Sisters, Brothers, Husband, and Children forgive me. What I am feeling today is more than my heart and body can handle and I have no more strength to be positive today. Ending it may give me the peace I seek. I am having trouble being positive for myself today. I don’t know if this will be my last post, only God knows if I will be successful in my attempt to end it all today. Only God knows if he is ready for me now to pass on.

Wednesday, July 4, 2007

Taking Time Out To Acknowledge Our Troops

Politics aside no matter how individuals feel about our troops being in Iraq, we should all be thinking of them today. Because of their courage and sacrifice we are able to enjoy Independence Day with our family and friends.

Today I pray no American life is lost and they leave Iraq soon.

Monday, July 2, 2007

I Prepared Myself To Not Pay Into the New Cigarette Tax

Tennessee cigarette tax law went into effect today and I am one Tennessean smoker who is not mad about it any longer. When I first heard the State of Tennessee was going to increase the taxes on cigarettes I was one pissed off smoker. As time went on I realized the State of Tennessee was doing me a favor. I was told many times by doctors to stop smoking, but the physical withdrawals I experienced and the fear of gaining weight was my excuses to continue to smoke.

Goodbye Benson I enjoyed you for the last 30 years, you were never good for me and you are too expensive to continue our relationship. I tried to say goodbye to you many times, but you wouldn’t let go of your grip. The calm I felt when I inhaled your smoke after a meal is being replaced with a new awareness on how my food taste. When I felt stressed I reached for you, but I no longer have to do that because Pfizer introduced me to Chantix, who helped me let you go.