LOVE and FRIENDSHIP

Multiple Sclerosis been good to me in 2010 and I pray it continues in 2011. Yes, I have had my moments, but it has not been as bad from previous years. There is no doubt in my mind, God does not give us more than we can handle. I know my MS behaved this year because my husband has been going through a lot medically in 2010. I am thankful I had been able to be there for him as he has been there for me when my multiple sclerosis is at its worse.

The unconditional love I feel for my husband, I would gladly have my multiple sclerosis rear its ugly head so he would not have to have any more surgeries or health problems. I cannot see my future without him. Therefore, my wish for 2011 is for the return of my husband's good health, continued better days than worse for me and my virtual friends living with or without Multiple Sclerosis.


See you all again in 2011!

It's Been Too Long...

photo credit: rowox.com

Well, I did not bounce back quickly after taking that dreadful 3-point flu shot with H1N1 being one of the components. I was literally out of commission for 32 days ironically multiple sclerosis was not the reason why. I will NOT take another flu shot if H1N1 is one of the components. With that said, let tell you what the two doctors I see the most, my primary care and my neurologist think about this year flu shot.

My neurologist does not believe the flu shot caused me so much suffering for thirty-two days. My primary care does believe the flu shot caused my distress because of the H1N1 and my immune system already compromised having MS. Hmm, now whom do you think I trust the most, and I am beginning to question my neurologist for refusing to believe the H1N1 component in this year flu shot could cause distress for MS patients.

It has been since my last post that I have taken a Copaxone shot, the way I was feeling taking a daily shot was the last thing on my mind. When I began feeling better, the thought of sticking myself again everyday kept me from doing what I know
I need to do. After, organizing my medical records last night into one large binder, I could not help but read my history.

I know I complained about Copaxone when I experience an IPIR. However, I honestly believe Copaxone has slowed the progression of my MS according to my MRI reports since 2003 to the present. BELIEVING is what gives us HOPE and keep us MOVING. Therefore, as of December 01, 2010, I will be taking my Copaxone injections again, and I will try my best not to stay off course as long as I did this time.

Finally, I have a problem with the CDC deciding to include H1N1 into this year infulenza shots leaving us without a choice. The H1N1 vaccine was rushed because of an outbreak of the swine flu and a fear of a pandemic. As far as I am concern the H1N1 was UNTESTED because it was rushed in the hopes of preventing a pandemic; UNTRIED because a mass amount of people refused the vaccine during the outbreak; and EXPERIMENTAL because it was mandated into this year influenza vaccine.

Showing No Mercy...Unless You Control IT

I WILL BEAT YOU DOWN IF YOU LET ME!










This heat wave is no joke! If hell is hotter than what it has been for the past three months...I pray living my life by the Golden Rule is my ticket into heaven. :-)

Multiple Sclerosis and I have been battling during this heat wave. IT is getting upset with me because I have not allowed IT to take over. IT needs to know I am in control of my body! There was a time I allowed IT to control my body, but I did not like the way IT played. I use to go about my daily routine as if I was not living with MS (IT) during the summer months and would have to be injected with 3000 mg of Solu-Medrol two to three times during the summer because IT would affect my body in a negative way for days.

This is the first summer in years; I have not had to have an IV Infusion. I know that is because instead of allowing IT to control me, I took control of IT by LISTENING to MY BODY. I have learned to say NO, and still be productive in my LIFE and that is the greatest feeling ever. When I was forced to quit working in my dream job eight years ago, I thought my life was over. I like my new non-paying job better. I now utilized the skills I have learned over the years to help and be a voice for others and work with disadvantage children.

Yes, I have Multiple Sclerosis, but to me MS mean I AM Mighty Strong!

Tomorrow Is Not Promised To Us

Today marks the second anniversary of the death of my mother-n-law. I am thankful to have some of my husband's favorite recipes of his Mom in her handwriting that she wrote in a memo pad for me in 1995. I miss her kindness, gentleness, wisdom, and loving personality. Her stroke came without warning and the mercy of God called her home quickly. My husband mourned her deeply, and I know he still mourns her. She is the reason he is a strong and compassionate man and I thank her for that.

I have the saying "Tomorrow is Not Promised to us" on my mind because I am thinking of the quickness of her death and the quickness of the death of my grandfather who died 28 years ago August. I am also thinking about my on health and the health of my husband. My husband is ill and I understand the emotions he is experiencing right now. I had been there when I was diagnosis with multiple sclerosis. This is not a pity post, this is a post about strength to live today as if there is no tomorrow.

The following is an example of why we should enjoy each day we have with loved ones. I returned home Monday from my family's 35th Family Reunion. On Wednesday a family email was distributed about my first cousin Gwen being in ICU on a ventilator...I could not believe the words that were on that email because I had just load pictures from my camera onto my computer and there was a picture documenting the laughter I shared with Gwen and others Saturday evening. Fortunately, God answer prayers, Gwen was removed from ICU yesterday and it looks as if she will recover.

The point to this post is no matter what we face in life we have to enjoy every day as if it is the last day we have with love ones and friends. Self-pity and depression can push a person to the brink of death. I know from experience that is not the answer, I harnessed my self-pity of living with MS into living with a purpose; I embraced my depression as part of me and take a medication that works for me so I can keep on living. I thank God every day for making me an example for others to see. I think the years of me living with multiple sclerosis prepared me to be strong for my husband and it prepared my husband to realize life is not over. That is why I know my husband is going to be okay once he goes through the cycle of knowing he now has to live life with a chronic depilating illness.

LIVE TODAY AND EVERY DAY AS IF THERE IS NO TOMORROW!

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.

Held Captive Only If You Allow It

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!

Vitamin D Deficiency

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

MS + Copaxone = ANXIETY

I started experiencing attacks of anxiety before I went on a hiatus from blogging. In the beginning, I thought maybe, I was doing too much…blogging, school, accepting board appointments, and helping in the Mayor's campaign among my personal daily duties. By the way, my candidate WON :)

I awaken one morning from a night sleep and I immediately felt panicky and fearful. The feeling last a few minutes, but I was complex to why I was feeling that way. As I continued with my day, I noticed I was feeling panicky and fearful through out my day. I did not associate what I was feeling to ANXIETY, I just knew something was not right to feel something terrible was about to happen and it was out of character for me. I brushed it off as residual effects from wearing a morphine patch for a year and suddenly stopping a few months earlier.

Waking up feeling fear and panic went on for weeks and it intensified to the point, I knew I had to get to the bottom as to WHY. I did not like what it was doing to me, it was starting to affect my life to the point I was afraid of being home alone, driving, and leaving my home. I was at the point of despair hiding this creature ANXIETY that invaded my thoughts and body.

Many times, I thought I was going to lose control of taming the creature within when I was out in public, therefore, I cancelled appointments, stopped blogging, and if I were not taking online courses, I would have quit school. Realistically, I knew nothing was going to happen, but this creature was paralyzing me. I start realizing keeping quiet was giving the creature within power.

I began taking that power back when I told my husband what I was going through. Of course, his response was to make an appointment with my therapist. I agreed, but the creature had me paralyzed to the point I could not drive without feeling as if I was having a heart attack. I was ready to have myself committed to get control of the creature within. I called my therapist and told him how I was afraid to leave my house and drive because I physically felt as if I was going to die. I asked him, “If I checked myself in the hospital could he see me then because I cannot keep going like this”. Unfortunately I could not check my self in for severe Anxiety because I was not suicidal or a harm to others, which is fortunate.

My next course of action to fight the creature was a visit to my primary care doctor and neurologist. It is no secret there is a drug for all ailments that invade our body. Once again, I was semi scolded by my primary care doctor and neurologist for waiting weeks to let them know Anxiety was kicking my ass. My primary care doctor asked me, “Is anxiety a side effect of Copaxone.” I responded, “I don’t recall anxiety being a side effect of Copaxone, but I will look into it.” My neurologist confirmed anxiety is a side effect of Copaxone and anxiety is associated living with multiple sclerosis. I was prescribed Cymbalta 60mg to control my anxiety creature. Cymbalta was good for my neurological pain because I use to take it, but I did not know it was also to control anxiety. It took three weeks for Cymbalta to get in my system, tame the creature, and start gaining control of my life again. As of today, I have been taking Cymbalta for two months and I plan to continue taking it until a side effect rear its head from taking it.

So many different side effects come with taking medication. It is not as if I did not know, but I have to remember that a side effect from a drug can happen at any time while I am taking it. I promised myself, when I am out of character; I will not wait until it become critical before I notify my primary care doctor or neurologist. Do not be a hard head like me, when you feel out of character get in touch with your doctor.

Fight the Feeling

Today was the book club I am in scholarship luncheon. As the president of the club, I had to be there. I prayed I would wake up not feeling like I have been since I began swimming my way out of the “D” tunnel. Every morning I have been suffering with anxiety and panic attacks when my husband leaves for work.

Each time I feel the anxiety surfacing the panic set in behind it…the panic feels worse than the anxiety. When I am in that mode, I am tempted to pick up the phone and call my husband or one of my children. I am proud of myself each time I don’t pick up that phone because they have lives to life and if I begin to call them every time an attack comes on, I would be creating a crutch. That is why I do not call them; I do start praying asking God to help me understand why I am experiencing the attacks.

Today I had a revelation of understanding my attacks. I have become afraid of my illness because of everything that has happened since April 9, 2008 when I had a bad IPIR experience. The experience did not kill obviously, but it scared me. I felt better after receiving oxygen, Benadryl and steroids, the worse was over so I thought.

After my IPIR experience, I went through…

-Making the decision to take Tysabri without my family blessing

-Not taking Tysabri because of a weaken immune system

-Choosing to go back on Copaxone because I experience the worse that could happen and I prefer to stick with something I know that works and I know what to do if I have another IPIR…an IPIR will not kill me, but the risk of contracting PML because of a weak immune system could.

-Causing a second degree burn on my chest

-Causing a second degree burn on my arm

-Wrecking my car for the second time backing out of my garage
The burns and wrecking my car was all from not having control of my grip in my right hand.

-Waking on one morning unable to walk on my right leg…thank God that only lasted for a day.

-Falling into a depression that could have resulted in a tragedy…I thank God my husband loves me enough to be putting up with me

After today, I know my anxiety and panic attacks will get better because my prayers were answered today. The unknown of the anxiety and panic was scarier than the attacks themselves. I received a calm when it became clear to me I was allowing all the above that happen to me within the last month build into fearing what MS can do.

I cannot stop what multiple sclerosis throws my way, but I will fight the unpredictability it brings into my life. Matter of fact, each time the challenges of MS knocks my on my a$$. When I fight back against MS, I feel stronger and proud of myself…I made it to the scholarship luncheon and performed my presidential duties :)

Multiple Sclerosis is one roller coaster ride I cannot get off… but I can conform to make the ride enjoyable for the rest of my lifetime.

It's ALIVE

Obviously, from my title I am no longer being pulled into the “D” tunnel. No matter how strong we are as a person, we all have weaknesses. You know like that one interview question, “What are your strengths and weaknesses”, I never gave an answer to the weakness aspect of the question. I always talked about my strengths. It is human nature NOT to admit our weakness.




I finally admitted my weakness since my last post to my husband, children, mother, father, and siblings. There was a time I would never admit I was depressed and I damn sure would not reach out for help. My father is the reason why I was like that because according to him there is no such thing as depression...it's all in your mind and some bullsh*t doctors come up with. In his defense I know he no longer believe what he believed all his life. I would go into the details why he no longer believes that, but I only reveal my family life experiences on my blog.

This last depression wave came on swift and powerful, hell I thought I had a handle on it. I became so out of control my husband was thinking of having me committed. Yea, that's how bad I spiraled. Come to find out my doctor was already informed. At first, I was offended because I thought my family plotted on me, but in hindsight, they wanted to protect me.

Had I not reached out to them and told them I needed help, I probably would have been involuntarily committed. Now that is some scary sh*t, but as my husband but it my behavior was some scary sh*t.

Depression tried to take me down into a tunnel and I could not fight it alone...I was trying, but I was loosing the battle. I thank God I had the courage to let go of my pride of appearing weak and reached out to my family. I am not all the way out of the tunnel, but I am not falling further down.

There was nothing wrong with admitting I needed help when my burdens became too heavy for me to carry. Ministry through music also helps me when the "D" Express becomes more than I can handle...the following is one of the best one I listened to while I was finding my way out of the tunnel...
because I knew I had to "HOLD ON"

">"

Fighting multiple sclerosis is challenging, it is so unpredictable…it is as the top of my blog says, “Life is like a box a chocolate, you never know what the next day will bring”. I dealt with a lot in my life, but dealing with multiple sclerosis is overwhelming. The depression that I get behind the changes MS causes in my life takes my thoughts to the dark side of hopelessness and helplessness.

If you are a regular, a lurker, or you found your way here via Google. My hope from this blog post is if you live with someone who is depress or if you are depress seek help before it is to late. Remember the saying, “It’s a thin line between love and hate”, here is another one for you “It’s a thin line between life and death”.

The mind is a wondrous complicated part of our being and to ignore what is going on in our mind can be fatal. Thoughts can eventually turn into action if your thoughts that are not healthy are not tended to properly. The stigma society has about depression is the reason many people will not admit they get depress or refuse to seek help for depression.

Suicide is the 11th leading cause of death in America with 32,000 deaths each year. On average, one American takes his or her own life every 16 minutes. Tragically, approximately 15 percent of people living with depression end their lives by committing suicide. And for each suicide, there are an estimated 25-attempted suicides.

As overwhelming as these numbers may be, the true tragedy is the devastatingly painful emotional state-often caused by depression- that can lead a person to consider, and ultimately, attempt suicide. You may be able to help prevent the loss of life of someone you know or love by recognizing the warning signs.

Signs of Suicide

Most suicides are preventable. The main step in prevention is to recognize the many warning signs:

- Withdrawing and isolating oneself from family and peers

- Using alcohol and drugs

- Declining level of performance at work or school

- Increasing levels of irritability

- Expressing feeling of hopelessness and helplessness

- Giving away possessions

- Talking about suicide

- Sleeping pattern or eating habit changes

Suicide doesn’t have jus one victim. Typically, one suicide intimately affects at least six other people. The pain and suffering of suicide resonates deeply in the family and friends of the deceased. If you suspect that a friend or loved one is thinking about suicide, talk to him or her about the noticeable behavior changes and express your concern. Depression is a treatable condition that can be overcome.

Excerpted from an article by John McKinsey, M.D., copy write 1999 University of Florida Brain Institute.

Looking at the picture above is a face that lives with depression that knows first hand how quickly depression can drown your thoughts of feeling hopelessness and helplessness. I am not embarrassed to show my face because by seeing my face and reading what I wrote saves a life then it is worth revealing myself. Suicide is a permanent solution to a temporary problem no matter how dark the future appears living with multiple sclerosis or whatever appears dark in your life. We all have it within us to continue living the life we want regardless of the obstacles that awaits us.

He Is One Reason Why I Fight MS

The other day is not the first time I had a horrific experience with medication I have taken to slow the progression of multiple sclerosis and I am sure it will not be the last. To see my grandson smile make me want to fight to be around as long as I can for him and my family.

There comes a time when I and I alone must make difficult decisions about my healthcare. Only people who live with this unpredictable illness can no what I am going through. Living with multiple sclerosis is not a cakewalk and it is a daily struggle to stay positive and navigate your life living with MS. I am not going to lie, it is a daily fight for me, but I am thankful that I have an inner strength that picks me back up to fight and not give in to MS.


My neurologist decided I should start Betaseron as soon as possible to slow the progression of MS. I understand as a doctor why she wants me to immediately continue a treatment. At the end of the day the decision has to be mine, therefore, I told my doctor, “After my terrifying experience the other day, I do not want to take anything right now. Yes, I know MS can cause serious problems if left untreated, but I have had serious problems treating it, so what is the difference".

I have decided to go without treatment to slow the progression of multiple sclerosis for now. I AM NOT QUITTING MY FIGHT WITH MS; I need to do this for me right now. In my heart, I know that my body cannot take another terrifying episode while on treatment.

There are risks in all of the DMD's available to slow the progression of MS. I plan to go without treatment until my MRI starts showing new activity of brain lesions or if I start having too many exacerbations. I hope that I can go a long while before any new changes. When the time come for me to go back on a treatment, I believe I will try Tysabri because it is a once a month infusion instead of weekly injections. I have had all I can take from injections.

Farewell Copaxone you have been kind to me; for the last several years you did stabilized my brain lesions, but my body can no longer tolerate you.

Right Ass Out From This Point On

I thought it would get easier as the years passed, but it does not. Everyday I prepare myself mentally when it is time to take my Copaxone injection. I tell myself "This is the day; I will not take minutes to press the auto injector button to release the glatiramer acetate into my body." I am still waiting on that day.

I wish I did not have to take an injection everyday. I wish researchers discover a multiple sclerosis drug to slow the progression of MS that does not involve injections or infusion. I wish I did not have Multiple Sclerosis, I wish, I wish, I wish so many things when it comes to living with MS.

My injection site choices are my arms, thighs, stomach, and ass. I know I should probably say buttocks, but eff that I am pissed. My stomach is the best place to inject myself, I have not experience a bad experience there (knock on wood). When I inject my arms, thighs, and ass the pain is more noticeable, injection sites are more noticeable, finally the worst part of it all in those areas I have experienced IPIR and nerve reactions.

I talked about one of my IPIR reactions, but I never talked about my nerve reactions until this post. Immediately when I removed the needle from my right buttock, the nerves on my entire right side went haywire. My body went limp and I dropped thank God I was in my bedroom and fell on my bed instead of the floor. All I could do was cry from the excruciating burning pain that was traveling a nerve path. I cursed having MS at that moment. The severe burning pain is gone, but I am left with nagging pain in that nerve. Morphine is not keeping this nagging pain away. I am reduced to taking Lortab 10mg for this breakthrough nerve pain because I dared to inject my right ass to give the other parts of my body a break.

I should have known better because this happened about a year ago when I injected in that area. I thought since it has been awhile, it would be okay to inject there again. I freaking found out the hard way how wrong I was. Come to find out from my primary care doctor I can no longer have ANY injections in that area because the nerve is damaged.

What a life, MS is like a box of chocolates...day to day I never know what to expect from MS. I do know this for sure...My right ass is off limits to needles.

What Should I Do

IPIR happened again tonight the only difference is that it lasted for two minutes. It is times like this when I just do not know what to do.

I have an appointment with my neurologist next Tuesday, but I know I have to call and tell her about my experience tomorrow. It may be time for me to stop injecting myself daily with Copaxone. If that is the case, I am not sure what form of therapy I will try to slow the progression of MS. I know I cannot take Avonex because of the severe side effect I experienced from drug. I never tried any of the others, but I do not know if I want to.

What should I do? For now, I am not going to worry and I will wait and see what my options are.

Breaking Out of Prison

I broke out of prison years ago, but some symptoms of Multiple Sclerosis try to put me back there every day. As I was going out on a date with my husband the other night, anxiety and panic start building within me. I quietly sat in the passenger seat as severe pain shot from my head to my toes, my heart start skipping beats and my nerves felt like jumping beans. I wanted to scream to my husband to turn the car around and take me home.

I am proud of myself every time I stand up to symptoms of Multiple Sclerosis. I was tired of always cancelling my plans or having my husband or daughters turn the car around because MS was rearing its head. I noticed when I did that I would become depress and at one point, I actually became a prisoner in my own home.

Instead of asking him to take me home, I fought back. I recognized over the years when I experience sudden severe pain, and nerve tingles, they would leave or calm down as fast as they would come. The skipping beats of my heart is a different story. I knew the first thing I had to do was to calm myself down to rid myself of the anxiety and panic that was building in me. I rolled my window down to deeply inhale and allow the brisk cold air hit me in the face all the while telling myself to relax. That caught the attention of my husband because he knew when I do that something is wrong.

Once I calmed my anxiety down I told him how my body was feeling, but I also told him I want to continue on our way. His only request from me was to tell my doctor about my heart skipping beats because heart disease is severe in my family history and I have been wearing morphine patches for over six months. I promised I would and I reminded him where to find my document that list the medications I take, the medications I am allergic to, and the surgeries I have had in case my symptoms did not calm down and he had to take me to the emergency room. We still had forty-five minutes to arrive at our designation and I was confident my symptoms would calm down to the point that was tolerable for me to enjoy my evening.

The symptoms of MS are so unpredictable, I never know when, what symptoms, or how severe it will attack me. I also know I cannot allow this unpredictable illness make me a prisoner in my own home again. That is why I have established a battle plan against this war I am in with Multiple Sclerosis. Each time I have a battle with MS when I am outside of my comfort zone (which is my home) and not allow MS symptoms have me retreat to my comfort zone. I AM THE WINNER! The cold air calmed my anxiety and panic; the severe pain left my entire body and mildly concentrated only in my fingers, my heart stop skipping, and my nerves settled to a mild tingle. My planned date with my husband ended as a beautiful, fun, and loving evening.

Take As Needed

There is nothing I can do when multiple sclerosis rob me of some of my cognitive. I can take Provigil to battle ms fatigue invade my body with a wave of extreme fatigue. I can also take a milder anti-depressant as I have in the past to fight ms depression.

Finally, there is the Solu-Medrol infusion that works when my ms symptoms cause my body to break down like Humpty Dumpty.



After my Solu-Medrol infusion Saturday, I felt great my body no longer felt like Humpty Dumpty. During my office visit Friday, my neurologist gave me her reason why she thought it would be a good idea for me to take Lexapro and Tizanidine daily. I explained to her why I did not want to take Lexapro and why I take Tizanidine on an as need basis. I finally gave in and told her I will start taking Lexapro once a day and Tizanidine twice a day starting Saturday January 05.

My living hell began Monday morning, mentally I felt as if I was going out of my mind and physically I could not get out of bed. I took back control of my life Wednesday. I do not try to play doctor on myself, but no one knows my body as I do. I called my neurologist and informed her on how I was feeling and as of today I will not be taking Lexapro anymore and I will only take Tizanidine, as I needed it.

It did not make sense to me to take pills that had me totally incapacitated mentally and physically. I went from living life to having no life and that is not me. I was not going to continue to take prescription medication that altered my mental state and robbed me of physically getting around no matter what my doctor thought. Life has been fine for me wearing a Fentanyl patch, taking Lortab as needed for break through pain, and injecting myself daily with Copaxone. Mentally, I am coherent and physically I could get around taking what I call my fabulous three. I also knew if I had any other symptoms that arise from multiple sclerosis I have an arsenal of medication as needed because at one point I was taking more pills than I can count on a daily basis because I was told to do so.

Because I was told by my doctors to take certain prescribed medications I almost lost my life twice. I am damn if I do and damn if I don't. I rather be damn if I don't from this point on.

Home Alone

Obviously, I did not go to Texas with my husband and daughter Sunday. I been experience numbness and weakness in my hands, I noticed it when I was preparing a feast for Thanksgiving. I tried ignoring it because I thought it would go away. I can no longer keep ignoring what I have been feeling because I experienced a new symptom that frightens me.

I had already told my husband I would not be going to Texas; I let him believe it was because I was upset with him. Which is wrong of me, but what the hell? I was upset with my Baby Girl because after putting my pride and stubbornness to the side and calling her to tell her I was sorry. She did not come home that morning. To be honest it bothered me, she did not come home until late that evening. I expected her to tell me she was sorry for her part of the argument and she did not after that, I shut down and decided I would give her what she want. I had nothing more to say to her and I do not know when I will.

My husband did not make things better when before my daughter came home, he said something I did not like, in all fairness to him. He did come to me and said let us start over, but I was already upset with my daughter and I was not ready to start over with him.

Hopefully, this new reaction I experience was because I was upset. Stress is a bit** it wakes up crap in your body and I try to keep my stress down. Although, I consciously felt I was not bothered by my daughter’s actions, subconsciously I must have been. When my nerves start trembling, I did not say a word. I did not say anything because I did not want to interrupt my husband trip (I was no longer mad with) and I did not want to be the reason he did not see his Mother (which I know is very important to him).

When I went to bed the nerve tremors on my left side was hard to ignore. I did not think anything of it because with my multiple sclerosis my nerves tremor mildly through out my body every now and then. As I said at first, it was mild, but gradually my entire left side started tremoring violently. It was so violent the entire bed was shaking. My mind start racing wondering what was happening. The violent shaking stopped after five minutes, but that five minutes felt like an eternity. My next appoint to my neurologist is not until February, but she gets in my a** when I do not tell her of noticeable changes. It is time to call because my noticeable changes have been headaches that caused dizziness and lost of balance, hand numbness and weakness, now violent nerve tremors. I bet a silver time my neurologist is going to schedule a Solu-Medrol infusion; I hope it will be for one day instead of three.

I am going to be optimistic about the violent nerve tremors, that probably happened because of the argument I had with my daughter and it was our first. My daughters are very respectable and I my feelings are hurt that my Baby Girl took her frustration of breaking up with her boyfriend off on me. The one thing I will not apologize saying to her is, “If you are broken up with someone, you cannot be dating. Because if you do date him now and then you are not broken up, you are just playing with yourself”.

I do not sugar coat LIFE with my children, I have always told them how it is because no one loves them as I do and I have no reason to lie to them. I know she is hurting from leaving her first love, but like I told her she is young and she will definitely fall in love again. A young man I know who likes my daughter afar, emailed me recently and ask me if she was still seeing the young man she met in college. I emailed him back and told him no, I want to share a portion of what he emailed back when I told him she was single. I probably should forward the email to my daughter maybe it will help her realize she will fall in love again.


The email referencing my Baby Girl...

So as not to bore you with more law school talk, I must say that I'm relieved that you weren't offended when I asked you about T***. I know that mothers can be very protective of their children. I do have to admit that I've been interested in her, particularly when you informed me that she was socially-conscious and had an activist streak in her. To any man who's also conscious, single, and ambitious, her qualities would stand out. And I'm not brown-nosing when I say that I could tell she had your spunk and passion when I saw how she got involved with various issues at Vanderbilt. And lovely too? Beautiful inside and out? What a combination. The bad part was that she wasn't single.

I haven't cyber-chatted with your "triple-threat" (T***) since long before the last time I corresponded with you, so I have no idea what's going on in her world. Anyway, let me not digress any further. She's a gem; that's undeniable. She probably deserves the best; I'd supply nothing less. But, unless I'm missing something, I don't think that she's looked at me in that way. Sometimes there are women who see later what they couldn't see sooner. Sometimes there are women whose preferences change as their priorities change (in life and in time). Sometimes it's greater later. Said Bill Withers: "Good things come to those who wait, but not to those who wait too late." I'm sure you understand. If I weren't knee-deep in law school preparations and plans, I'd probably email your Baby Girl.

Winning takes a plan and a strategy, along with many intangibles. No one can win for me but me, just like no one can get someone else into Heaven. If I might quote author Claud Anderson, we all have our own row to hoe, our own trail to blaze, and our own path to find. It would be one of life's uncanny ironies if my and Tara's paths crossed that way, but of course, the true question is whether the two ships intersect at parallel lines or at perpendicular lines. (Remember that from Math class?) If those lines are perpendicular, then those two ships will meet by coming from different paths and then will diverge because they're on different courses. If those lines are parallel, then that means that the two ships somehow meet while coming from similar paths but continue on, beside one another, while charting the same course forward. But again, no matter what the lookout sees, "It takes two to make a thing go right. It takes two to make it out of sight." If it's meant to be, it will be.

To me, she would be gold.
Her rarity - exemplary - unfolds.
The look of her lash, the purity of her pupils,
Cheeks that know no tear.
The luster of the eye, that innermost ambition,
Her driving force - no fear.
Whether in wind or in water, in humidity or heat,
Each day would be blessing, refreshing, unique.
Every blue moon, yes, dare there's a frown.
Heart's temperature up, up, then down.
But never, never long enough for her sweet smile to drown.
To hold her is bliss, so kind, the first kiss.
To acknowledge this not, is foolish, remiss.
Her energy, frenetic,
Her virtue, a wonder.
What D**** joined together,
May none put asunder.



Anyway, anyway, anyway...

Maybe you liked that poem, maybe you didn't. It was all in the spirit of fun (with a hint of seriousness).

Home For Christmas

This was the first Christmas I was home in seven years with my children and my grandchildren since they were born two years ago. My husband and I normally go to Texas to be with his Mother. His Mother is up in age and when he has time off work, he makes it a point to go visit her.

You have to love a man who loves his Mother and I definitely love mine. Not being home for Christmas with our children and more than ever since the grandchildren were born in 2005 had me torn. I was pleasantly surprised and pleased he decided we would start going after Christmas to visit with his Mom.

Words cannot express the happiness I felt being home for Christmas with my children and grandchildren after missing the last seven years. Although I enjoyed going to Texas, Christmas was not the same having them come over to our home before Christmas Eve to receive their gifts.

Our oldest daughter started her own tradition the year her son was born. Christmas Eve is at her home, family and close friends bring a dish to compliment her main dish and we exchanged and opened gifts there. I must have been very good because they spoiled ME this year.

Multiple Sclerosis reared its head, my body was in piercing pain, but I refused to acknowledge it. The joy of being with MY family this Christmas was worth putting off taking Lortab for the break through pain I was experiencing.

The highlight of my evening was when my grandson ran through the house hollering, “Uncle EJ, Uncle EJ, come here”. He grabbed him by the hand and pulled him in the direction he came flying out of, as I watch this I was wondering what was on fire. I looked over to my right and saw my grand daughter standing down the hall with a very out of the ordinary look on her face. I started to get up and access the problem myself, but I decided it was best I leave that alone because my grandson went to get her father and I was hurting to bad to get up.

When he approached, he took her by the hand and walked towards the bathroom. It did not take long to see what the fire was. My grand daughter tried to make it the bathroom by herself. Her pull up was full of the brown stuff. Thank God, I did not get up. He had to clean up a big mess and give her a bath. She tried and you have to give her credit. After witnessing his cousin dilemma, that grandson of mine can no longer get away with not letting someone know when Buster is ready to come.

I spent Christmas Day getting my pain back to a tolerable level. However, it was a wonderful Christmas for me. I hope Christmas was joyful and wonderful for those of you who read this post.

The Drug Pump

I do not know if I can have a drug pump inserted in me to administer medication directly into the spinal fluid of my back. A friend of mine who also live with MS called to tell me that is exactly what he did. He went into the hospital to have the Intrathecal baclofen (In-trah-THE-kal BAK-loe-fen) drug pump inserted into his spine.

Only people who experience severe pain can relate with one another. Living with severe pain is a *itch. From a scale of 1 to 10 on a pain chart, I live daily at a scale 7. Each time my pain scale moves up the chart I have to adjust my life in order to have a life. Then I have those days that doctors call break thru pain that hits the 10-scale point or off the charts all together. To suffer consecutive days with pain at that level it starts to affect you mentally. I experience the emotional effect of pain and I do not ever want to experience that again. (If you want to know what that was check on July’s archive because I will not be linking it anymore when I refer to that time in my life).

That is why when David told me he had Intrathecal baclofen drug pump inserted in his spine, I understood his desperation for relieve. I am desperate to find relieve when my pain goes of the charts, I cannot see myself doing what he did, but I also cannot say I will not.

What Is Multiple Sclerosis

Recently someone said to me, "I didn't know black people could get multiple sclerosis". I looked at that person with a WTF look on my face wondering where the hell they have been living. Then I realized many African Americans are not aware of multiple sclerosis. My first response was multiple sclerosis doesn’t discriminate and I went on to explain how multiple sclerosis affects the body. To make a long story short the individual was concern enough to make an appointment with a neurologist to rule out MS when she recognized herself with my story of my journey finding out I had multiple sclerosis.

Here is an excellent visualization explaining multiple sclerosis. It mentioned numbness and tingling, but forgot to mentioned the PAIN multiple sclerosis can cause.

You Have To Keep Pushing

I submitted my name over a month ago to volunteer at the sixth U. S. Marshall Service Fugitive Safe Surrender pilot program in Memphis. My day to volunteer was on the very last day of the program which they told us at training it would be the busiest day of the program. When I know I have to do something I try not to exert myself so I can reserve my energy. My husband wasn’t too please when I told him our Friday night date night would have to be on Tuesday, Wednesday, or Thursday. You know how it is when a tradition is broken for a man, but we had fun leading up to Friday for my day of rest.

Of course I can not tell multiple sclerosis not to act up. Sometimes I wonder why ms act up when I have definite commitments. For some odd reason it never fails…the day before I have a commitment my entire body feels like it short circuits. I have the most annoying nerve tingles, pain, and limb jumping the night before my commitment. There was a time I would cancel out and each time I did that I would go into a depression because I felt as if I did not keep my word to someone or I was letting down my family or friend if my commitment was related to them.

It is a victory each and every time I push thru the agony of this unpredictable illness. I had a wonderful time at the Fugitive Safe Surrender program and met some amazing people. The best part of my volunteer experience Saturday was seeing citizens taking advantage of the Fugitive Safe Surrender program to surrender in the hopes of having a second chance in turning their live around. I saw all types of people from every walk of life, the expression on their faces and the temple of their walk when they first walked in was entirely different when they were walking out.

Memphis should be proud of how successfel the program was in its city they have beat the previous five states with the number of citizens surrendering. Cleveland in August 2005 saw 850 persons surrender over four days. In the November 2006 FSS Program in Phoenix, 1,320 persons surrendered. In Indianapolis in April, 530 persons surrendered. In Akron in July 2007, 1,125 persons surrendered. In Nashville in August 2007, 561 persons surrendered, and in September 2007 Memphis 1,600 persons surrendered.


David G. Jolley U.S. Marshal, Western District of Tennessee and I still managed a smile after a long day. I know he was glad the four days were over so he could get some much deserved rest.


To top off my day I had the opportunity to see the Blue Angels fly over my subdivision.