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.

Reflection

MS’ers , non MS’ers, and readers who commented and emailed me expressing concern in reference to my unfinished post June 17…THANK YOU for caring about my well being.

When it rains it pours, I had been through a storm when I decided to stop taking

The Duragesic (Fentanyl transdermal system) patch is a powerful opioid pain medication for moderate to severe chronic pain. Duragesic is also a DEA Schedule II narcotic and prescriptions require a DEA Order Form. Fentanyl has an analgesic potency of about 80 times that of morphine, it is generally prescribed for long-lasting relief from intense, persistent, and chronic pain when pain needs to be controlled 24/7.

I have been suffering with chronic pain since 1987 and I probably taken every prescription pain medication known to man. In the beginning of living with pain, Tylenol and Ibuprofen worked for years. When my body became immune to the 3000mg a day of Tylenol and 3200 mg a day of Ibuprofen, I was prescribed Percocets, Darvocets, Lortab, Vicodin, Ultram. Hell, you name a pain medication I more than likely have taken it. Unfortunately, I could not function taking the prescribed pain medication, I also did not want to become addicted. However, I need something to control my pain to have a life. My neurologist finally suggest that I take Fentanyl because it was a patch that would release medication in my system 24/7.

When I first put on a Fentanyl patch the dosage was too strong, but once the dosage was decrease I was euphoric. Fentanyl had me feeling GOOD, I had absolutely no pain. I was able to function...I had a life. Over time, I start noticing my heart skipping beats and my breathing becoming very shallow as I slept and I know it was God's grace that woke me from my sleep each time it happened. I also noticed that my mood was becoming erratic. Yet, I refused to believe Fentanyl was the cause of my dark depression, heart palpitation, and breathing issues.

As in the past with other medication, my new best friend Fentanyl turned on me. I did not want to believe Fentanyl was causing the dark depressing that was creeping inside of me in April. I blamed it on multiple sclerosis; because MS’ers experience depression now and then, but deep down I knew it was not MS depression. Once that dark depression manifested, I knew I had to make a decision to continue or discontinue wearing the Fentanyl patch, I began fearing I could die in my sleep wearing the Fentanyl patch or do something crazy. I finally made that decision to stop taking Fentanyl and what a ride it was. I had no idea I should have weaned myself off of Fentanyl instead of abruptly stopping.

By the grace of God I made it through. I experienced severe nausea, the feeling of creepy crawling bugs over my body, goose flesh/bumps, and severe chills for four straight days. By the fifth day, I called called to have myself committed into a hospital for drug addiction withdrawal once I realized that was my problem. I was told there would be no need for me to come because I went through the worse of the withdrawal symptoms and I should start feeling better.

The nurse was right because i start feeling better, the symptoms subsided and I could tell I was on the road of recovery.

I know I did the right thing stopping the flow of morphine in my body.

A Wonderful Weekend with My Men

It was wonderful to enjoy my better half birthday this year feeling no fatigue, tingles, spasticity, and pain. This was the first year in a long time I was able to enjoy an entire weekend free from those bothersome symptoms. Spasticity is returning in my legs, but I am still happy because I had a symptom free weekend and this is a perfect time to take a Tizanidine tablet before it gets to bad.





Remember the brother I was afraid for, look at him now. He is off the hard drugs and the streets. I had the best weekend with him. We caught up on friends we grew up with and talked about the ones who died or been killed. I told him it was good to have him back, but his brain has been fried because he argued I was older than he was…he did not believe me until I showed him my birth certificate. I never talked about my other brother (in black), but he is the one he had two open-heart surgeries before the age of 40. I received one of those 3 o’clock am calls when he had to have an emergency second heart surgery. My husband droved as fast as he could from Tennessee to Missouri because it was highly likely he would not survive through surgery. They literally had to remove his heart and he has the biggest heart in the world. We made it to the hospital as he was getting out of surgery. The mental picture of seeing him hooked to all those machines still give me nightmares because I was going to loose my big brother.





God is good because my brother survived to see his talented sons make it to manhood and witness their dreams come true. My oldest nephew graduated today with a degree in Mass Communication and he received the phone call he wanted to hear his entire life today. The Buffalo Bills signed him as a free agent for their team, now he has the opportunity to show his talent and skills to a pro league. Where has the years gone, it seems like just yesterday when I use to see him play in the football pee wee leagues. When I watch him, play in college I prayed this day would come for him because he has been dedicated to football since the age of six.

His brother is just as talented, he love football as much as his brother, but he also has talent in wrestling and baseball. I asked him this weekend which sport he plan to pursue professional and he announced he wants to play professional baseball. I have no doubt he will achieve his dream because I have witness the dedication he and his brother displayed in their sport and books.


I could not be happier because I had a wonderful weekend with some of my favorite men and knowing prayers are answered.

My Goodbye Letter From Copaxone

April 18, 2008

Dear D:

Thank you for taking the time to talk to us the other day about your experience with COPAXONE (glatiramer acetate injection). We're sorry to hear that you are no longer continuing with your daily injections. We know there can be many concerns and issues for maintaining therapy, and sometimes these concerns may seem to outweigh the benefits of therapy.

Although you are no longer on COPAXONE, you are still eligible to receive Shared Solutions program offerings that are not specifically designed to support COPAXONE use. We will make sure you continue to receive these materials. We wish you well in managing your multiple sclerosis and encourage you to utilize the support of your local chapter of the National Multiple Sclerosis Society. If you and your doctor decide at any time that you should resume COPAXONE, please contact Shared Solutions so we can provide you with materials and support to help you maintain therapy. Take care and good luck.

COPAXONE is indicated for the reduction of relapses in relapsing-remitting multiple sclerosis.

The most common side effects of COPAXONE are redness, pain swelling, itching, or a luomp at the site of injection, flushing, chest pain, weakness, infection, pain, nausea, joint pain, anxiety, and muscle stiffness. Thesee reactions are usually mild and seldom require professional treatment. Be sure to tell your doctor about any side effects.

Some patients report a short-term reaction right after injecting COPAXONE. this reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and go away by themselves without further problems.

Warm regards,

The Shared Solutions Team


The Shared Solutions team and Copaxone have been great to me over the years. I experience all the common site effects except (infections), I was becoming tired of the common side effects, but I knew I had to suffer the bad to benefit from the good, which was slowing the progression of my multiple sclerosis. Like a trooper, I suck it up and injected myself daily.

It was hard to deal with the common side effects over the years, but I DID IT. What gets me is how the Shared Solutions Team nonchalantly referenced what some people experience besides the common side effects. As someone who just experience it a second time Shared Solutions need to freaking stop referencing an IPIR experience nonchalantly.

Speaking for myself, it is one thing to get use to the common side effects, but they are out of their freaking minds if they expect ME to get use to the "what some people experience". They also fail to mention when in what some people experience is your body could break out in hives. Maybe enough people has not experience a break out of hives when going through an IPIR experience that last longer than a freaking fifteen minutes to mention it.

I thank the Shared Solutions Team for offering their continue support, but I DECLINE to continue my association with you.

I NEVER WANT TO SEE ANOTHER VIAL OF COPAXONE IN MY LIFE! I been there and done that and I do not believe in backtracking. Copaxone has done all it could do for me and it is time to move on. I done nothing but think about what treatment I will or will not take to continue slowing the progression of my multiple sclerosis since the night I knew I could no longer take Copaxone.

My reality is the treatments that are available for me to take all have common side effects and "what some people may experience" problems. Unfortunately, for me I experience common side effects and "what some people may experience" on every medication I take. It’s just a matter of WHEN it will happen to me. I will worry myself to death wondering when I will experience the worst of what can happen being on a medication.

I have decided to try Tysabri, because I believe Avonex and Copaxone worked in slowing the progression of MY multiple sclerosis. I have my days with mobility, but I am not permanently immobile, I have my days everyday with pain, but I am on a regiment for pain that works for me that I am still functional, I have been fortunate not to wake up and not being able to see, I have been fortunate not to have lost my voice. Although there are other problems we MS'ers experience, the ones I referenced above are the ones I feel blessed I am not having permanent problems with and I can continue to enjoy living life how I know it.

When I was diagnosis, I FEARED loosing my mobility, sight, and voice. I know it could still be a reality, but I had to conquer that daily worry of fearing what I feared the most living with MS. Second Timothy 1:7 and Psalms 23 help me when I FEAR something. Those biblical verses are the same verses that will help me conquer what I fear about Tysabri. By the time I start my first Tysabri infusion I will have a peace of mind of what I fear the most selecting Tysabri as my next therapy to slow the progression of MS. Taking RISKS are part of LIFE; we all have done at least once in our lifetime. Okay, I have done it more than once :) I am going into this new treatment well aware of my risk.

I admit, but now I release that I feared I could be that small percentage of people who contract PML while on Tysabri as a treatment.






I am witness that...









"God has not given us a spirit of fear, but of power and of love and of a sound mind".

"The Lord is my shepherd;
I shall not want.

He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name's sake

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

You prepare a tale before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely, goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
FOREVER".

As of this moment I am letting go of my fear of Progressive multifocal leukoencephalopathy (PML)