You Have NO Choice

I am having second thought of getting my flu shot Tuesday, September 14. My initial reaction was NOT to take it once I was told that all influenza shots have H1N1 in it. I took the shot because I know Multiple Sclerosis weakens the immune system, making it so much easier for me to end up with "the flu". Multiple Sclerosis can actually set our bodies up to make getting "the flu" a much more dangerous situation.

I am having second thoughts about taking that flu shot with H1N1 in it because I have been experiencing the following flu symptoms: cough, headache, sore throat, runny nose, aching muscles, aching joints, weakness, and fatigue. In the beginning, I thought I was having an MS exacerbation because of the intensity of aching muscles, joints, weakness, and fatigue symptoms I live with everyday, but managed when those symptoms stay at a level 6...unfortunately they are at a 10, thankfully have medications to relieve the pain. I knew more was going on once my nose start running, my throat-became sore, and I started coughing. It clicked to me that I am trying to come down with the flu. I guess I can look on the bright side of things; I do not have a fever. If the symptoms that are not the same as my MS symptoms stay mild, I am hopeful I will bounce back soon.

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?

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!

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.

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 :-)

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.

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.

Living With MS....MY WAY

I thought I was going to get myself together when I wrote “MS you can’t keep a good person down” and “Honey you are a Junkie” in June 2007. All I did was trade in the numerous prescription I was taking daily and as needed for a more dangerous and potent drug. My reflection was the best thing to happen to me in 2008.

I still live with pain, tingling, numbness, fatigue, nausea, dizziness, and insomnia. Hell, living with MS I never knew which ailment was going to afflict me, or when it was going to happen. I still do not know today because MS is a predator that I cannot control, but I can control how I allow it to affect my life.
Too many times, I allowed MS to put me in a depress state, for too long I taken drugs regularly to keep symptoms away. Allowing MS to dictate my mood and what I put in my body is what will cause my DEATH. The aforementioned is my reality of living with MS.

I realized if I could live through withdraw symptoms of Fentanyl, I can live with pain, tingling, numbness, fatigue, nausea, dizziness, and insomnia without popping a pill or capsule everyday to keep the symptoms away. I am no idiot; I will take medication, as I need it. I am proud of myself because I have been strong enough not reach for a pill or capsule when MS take me for a ride with one or more of my symptoms. I am proud of the fact I need to have new prescriptions written for the MS symptoms that plagues me when I go see me Neurologist February 17…yes, it has been that long since I taken what I call my as needed drugs.

I have come a long way, the only drugs, I take on a daily basis are my Copaxone injection and Cymbalta. I would not be taking Cymbalta if I had a severe case of anxiety recently. My anxiety is better and I contribute that to Cymbalta, therefore, I will continue taking my Cymbalta on a daily basis. I never want to experience the type of anxiety I just overcame in my life.

Living with MS my way may not work for others, but damn sure works for me.

Solu-Medrol to the Rescue

I believe MS is a jealous disease. Remember when my body felt split in half, eventually my right side was slowing mending back to my left, but it still feel different from my left side, just not as intense from when I first talked about it. Two weeks ago, the right side of my head down through my neck and slightly below my right shoulder was becoming more painful than the other part of my right side. In the beginning I brushed it off thinking maybe I slept wrong, but as the days went by the pain intensified to the point, I could not move my head.

Still not wanting to believe it was an exacerbation creeping up on me. I start taking my Lortab for the pain and Zanaflex for the spasticity. I thought I had it under control because the drugs were working. I continued with my life attending the candidate I support for Mayor meetings and rallies. With the holiday, approaching I was ecstatic that my youngest daughter was coming home and I would have all my girls home for the holiday. I start preparing all of their favorite foods and while I was at it, I cooked collard greens and pinto beans to freeze for later use.

Nothing was going to stop me from enjoying my girls and grandson Labor Day weekend; it has been since July, that all of my girls were in one room. I was overjoyed of having my family together, that is when I realized MS is a jealous disease, my pain and spasticity that Lortab and Zanaflex had in control was being overpowered. I was no longer getting relief from the drugs. I put on a brave face and enjoyed my family; I REFUSED to lie in bed during their visit because of how I was feeling. I am paying the price now for not giving in to symptoms of MS that tried to take my joy away. Had I given in to MS I know I would have become depressed. Exacerbations had robbed me of many fun times with my family that put me in a depress state of mind. After my last bout of depression, I developed an attitude of fight or die and I am not dying anytime soon.

When I woke up Sunday morning, I could not walk; the pain and spasticity in my head went into my upper right hip. MS was showing me it could take me down no matter how hard I was fighting. The drugs were no longer helping the pain; I was wishing I never stopped taking morphine. I finally waved the white flag and called my neurologist, I need reinforcement. This MS exacerbation was not going anywhere soon. I no longer could move my head, or walk without the use of my cane, and the pain was too intense.

Solu-Medrol to the rescue, today is the first day of three 1000mg of steroids. (I am hoping for that high energy euphoria feeling this time around. The last time I had steroids I was one angry agitated witch.) Symptoms of MS did not win this go round...

I WON this battle because I enjoyed my family the holiday weekend.

Split In Half

Daughter: “Mom are you okay.”

Me: “Yes, I am okay why you ask.”

Daughter: “You do not look well and you are walking funny.”

Me: “To be honest, I feel as if I am split in half.” “I have been trying to ignore I am having problems with my right leg, but now the entire right side of my body feels different from my left.”
My daughter looks at me very hard then she says, “You know the right side of your face does look weaker than the left.” I gasp, “You are kidding me” with a straight face she said, “No I am not, that is why I asked if you are okay because you looked off to me today and you are moving around the house like you are okay, but I can tell you are not. Sit down and tell me what needs to be done, I will take care of it.”

A relief came over me because I could now tell my family how I have been feeling since we been home from Texas. I been going acting like all is well, but deep down I knew my body was going through changes. I came home from Texas anxious to get back to blogging and visiting my virtual MS blogging buddies site and my other favorite non MS blog sites that I push what was going on with my body out of my mind.

When I was in Texas during the first two weeks in July, I blamed Texas HEAT and HUMIDITY on the new affliction my body was experiencing. Not only did I have to deal with a summer cold that flared my MS, I quietly suffered with a debilitating pain that hit me in on my right side. When I would step on my right leg, a lightening bolt pain would hit me directly in the small of my back on the right side and forcibly radiate down my right leg that knocked me off balance. I could not walk, I tried to take a step again and the same thing happened. Instead of alarming my family I tearfully went to bed and prayed to God, “Please do not let MS rob me of my mobility NOW, not NOW with all that is going on with “E” he would not be able to handle this NOW. I am aware of what MS can take from me, but this is not the time. Please take what is afflicting my body right now away and while you are at it take this cold with you.”

I could not reveal what was happening to me because my family was grieving the lost of Moma Nora. I was able to hide what was happening because everyone already knew I was feeling bad from my summer cold. Fortunately, my prayer was answered the temporary lost of the use of my right leg was brief. I was happy to leave the Texas HEAT and HUMIDTY behind, but a heat wave was waiting for me when we returned to Tennessee. My summer cold and MS flare was better when I returned home and I did not experience that new affliction I experienced in Texas. I thought to myself, “It must have been the heat that caused the right side of my body to do what it did in Texas.”

Sadly, that was not the case. I cannot get angry that the new affliction my body was feeling returned because at the end of the day my prayer was answered God took it away while I was in Texas. I tried to go about my day by ignoring how painful and weak the right side of my body felt. I literally felt like two people and I still feel that way as I type this blog post. The left side of my body feels normal, I cannot say the same for my right side...imagine this:

On the right side of my body I have a headache, my eye feels lazy, my arm have a lightning bolt pain striking me above my elbow, and my back have radiating pain shooting through it. My hip has a standing sharp pain in the joint that connects my hip and leg bone, and to make matters worse, my leg feels numb as if it is being weighed down by a ton of bricks.

I start feeling this way on the third day upon my returned from Texas, I thought if I was still wearing the Fentanyl patch I probably would not be feeling none of this. That is what I LOVED about the Fentanyl patch, I did not felt ANYTHING, and I was PAIN FREE. I have been tempted to call my doctor for a prescription, but instead I have been taking Lortab 10mg to get some relief from the pain when I could no longer tolerate it.

If the networks ever have a game show on who could tolerate pain the longest before taking something for it I would probably win.

I went to see my neurologist yesterday and I am scheduled to have a MRI Tuesday of my C-Spine and T-Spine to check and see if I developed lesions on the spine. I am optimistic that my MRI will be negative and I am mentally prepared to accept the worse case scenario.

I am holding on to the belief it is the HEAT that is causing my body to temporarily split in half and the two sides will unite in harmony once this heat wave is over.

Stop The Pressuring

My mind is made up! I do not want to start another treatment to slow the progression of multiple sclerosis right now. Give me a break, I was the one who felt like I was dying when Copaxone crushed my chest, took my breath away, and blotted my body with hives that itch I was living in an ant hole.

Doctor “"D", you need to get started on another treatment right away."

Me “I do not want to start another treatment right now, I need a break from injecting myself, and I do not feel my body can handle starting a new treatment right now."

Husband “Have you ever known me lost for words"

Me “No"

Husband "For the first time in my life I was lost for words, seeing you holding your chest and trying to breathe. It hurt me to see you like that and I could not do anything for you. I was scared of the thought of being without you."

Me "I did notice something different about you when I was in crisis, I was glad you were home because when you are near I feel safe whenever I am feeling bad. I am sorry I scared you, but I decided not to take another treatment to slow the progression of my MS."

Husband "You can't do that, at least we know Copaxone has been working. You have not had any new lesions since you have been taking it. What about me? Okay, I can understand why you feel that way, but take a few days to think about this some more."

Nurse calling for the doctor again Tuesday, Doctor, "D, have you decided what you are going to do, you really need to start a new treatment right away. You have been doing so well and I do not want you not be on a treatment. You have been on Copaxone for about five years and it did prove to work when you were on it. That is the purpose of being on a treatment to slow the progression of the disease."

Me "Dr. "P", I do not want to start another treatment right now; I am shell shock over what happened last week. I can tell you this, I definitely do not want to take the treatments that require me injecting myself, therefore, the only choice I have is Tysabri. When I am ready again, I will take Tysabri".

Doctor "Good, come into my office this week so we can start the process."

Me "I have an appointment already for May 2; we can do all that then."

Doctor “We should not wait until then because we have to ask you a series of question to start Tysabri (I wonder what that is about) and file insurance papers. Approval can take up to five weeks if we wait until your May appoint, it would be around June before you can have your first infusion."

Me “I have no problem with that."

She was soo insistent, I gave in and my appointment is this morning. I do not like the feeling of being pressured and that is how I feel right now. I know my doctor means well, but she did pressure me into this appointment. I am going with how I feel and I will not be making that appointment this morning. I will see her on my original scheduled appointment...this is my life not hers.


At least my husband is no longer pressuring me; he is willing to accept whatever decision I make. He has been helpful with a suggestion that I am thinking about trying before starting a new treatment.