Wednesday, April 30, 2008
To keep my frustration down I am not watching Mainstream Media as I have been. My television set stayed on CNN and MSNBC when I was not watching my favorite network shows. It was bad enough knowing FOX/FAKE News (a network I never watch) was an Obama hater and made it clear they did not want to see a Black President of the United States. CNN and MSNBC have joined “F” News to destroy Barack Obama.
To watch what I once thought were credible cable news outlets have become too nauseating to continue watching on a regular basis. I would not mind it so much if they were fair about their actions. It is no secret Clinton and McCain does not come with baggage that they wish they could hide and bury forever. It is also no secret that there are white religious figures who promoted HATE.
My only hope is the intelligent thinking Americans can see through what is Mainstream Media is doing. They would have you believe that Reverend Wright was the devil and Obama is his spawn who is seeking the highest elective office in America. Rev. Wright is his own man just as Obama is his own man, but nooo the media wants to join them at the hip. Rev. Wright is speaking THRUTH about America for the most part. However, when he goes into HIS opinions of American conspiracies such as AIDS and 9-11 it is just that HIS opinions. It is WRONG of the media to link Obama and Wright as if they are Siamese twins in thoughts and beliefs.
So what if he attended his church for twenty years that does not mean he agreed with everything the Reverend believes. I disagree sometimes with what my pastor say in the pulpit and away from the pulpit, but I still attend the church. The bottom-line Pastors, Reverends, Rabies, Priests, Evangelists take your pick they are Men who preach the word from the book…they are not God. In my opinion, the majority of them will not be knocking at heavens door.
Here we are in 2008 displaying for the world to see that the United States is not united. It is hypocritical of the United States to tell other countries how to be when SHE still cannot accept a Black man to be President. I hope that by the time, my grandchildren become of age and I am alive to witness the United States living up to…
Equality, Liberty, and Justice for ALL!
DOCTORS' MADE HOUSE CALLS
Starting Thursday May 1, I have doctors' appointments Friday, Monday, Tuesday, and Wednesday. Hell I am tired of just thinking about the entire invasion my body is going to endure. Life would be grand if I could have this entire invasion done in the comfort of my home.
I am not complaining I am just making light of all the appointments I have starting tomorrow and trying to keep my mind positive that I will nothing but good news from them all.
Sunday night I took a Tizanidine because I felt spasticity creeping in my legs. I felt the tightness and pain from my calves down to my ankles. I was grateful it waited until after my weekend ended before it started.
When I was given Tizanidine to take for spasticity, it was prescribed take one tablet every three hours. I did just that in the beginning, but I did not see the need to continue taking it once I was no longer experiencing spasticity in my body. Tizanidine was put in my take as needed category because it did the job after a day. Well, I was so lucky this time around, when I woke the next day, I did not feel the tightness and pain while I was lying in bed.
The minute I stood up and tried to walk my legs felt like concrete, every step was painful and my balance was shaky. I had no choice but to painfully make my way to the monstrous looking four-prong cane because I need assistance to keep from falling. I hated it when my doctor ordered me a four-prong cane and I was determined not to ever use it.
I thought to myself, “God, please don’t do this to me now after I had such a beautiful weekend and I have been feeling better since I have not been injecting myself with Copaxone”. It is funny how quick the mind thinks the worst and how easy it is to start feeling depressed when your way of life is threaten. I pushed the negative thoughts out of my mind and replaced them with positive ones. I put a plan of action together. First, I had to get rid of my vanity and accept the fact I need the help of my cane for now. I used my cane as I moved about my house and stayed off my legs as much as possible. Monday I completely rest in bed all day.
I decided not to pump myself with Tizanidine after taking it for a day and I refused to take Lortab 10mg to combat the breakthrough pain I was feeling from the spasticity. The morphine I have going into my body 24/7 is enough and I am trying to breakaway from taking Lortab whenever I have breakthrough pain. My goal is not to become heavily dependent on medication, I been there and done that. Since I have been on Duragesic patches, I noticed many of the daily symptoms I use to feel from MS are far between. I dwindled myself down from the many prescription drugs I am prescribed and my goal is to continue the Duragesic patch and a treatment to slow the progression of MS...Tysabri. I prefer to keep the other prescribed drugs as needed and my hope is I will not need them often.
My legs are feeling better and I do not need the aid of my cane, I credit rest, not allowing myself to become depress over my concrete legs, and accepting the reality my life is subject to change. For now I can keep on moving! I realize it is how I approach the changes when they occur because for now the changes are temporary when they happen. If a permanent change eventually happen I will deal with it when the time come.
Sunday, April 27, 2008
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.
Thursday, April 24, 2008
The semester is finally over for me. This semester had been ROUGH to complete living with MS. Through all my trials and tribulations, I did not do too bad two A’s and one C and I did not have to drop a class.
I was devastated I had to withdraw from my classes a couple of years ago because of symptoms arising from MS prevented me from making it to class. I was allowed to miss three days in the semester, but you know MS do not care what you have to do. The best to come from technology was that it opened the door for colleges and universities to offer online classes for people to take continuing education courses pursue a degree or further a degree.
Tuesday, April 22, 2008
April 18, 2008
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.
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
As of this moment I am letting go of my fear of Progressive multifocal leukoencephalopathy (PML)
Friday, April 18, 2008
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"
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.
Monday, April 14, 2008
When you’re head is resting on the chest of the person you LOVE, their arms wrapped tightly around your body and every fiber in you feeling the LOVE they have for you radiating off their body like rays from the sun.
Your heart is smiling and your mind free.
It is a wonderful LIFE, when you embrace and cherish LOVE from another unconditional.
"Just To Be Close To You"
Sunday, April 13, 2008
Friday, April 11, 2008
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.
Thursday, April 10, 2008
Like the Amy Winehouse song..."No No No to Rehab", I am singing "No No No to Copaxone." It happen again last night, this time it forced me to the emergency room. Immediately after my injection my heart and chest felt tighten to the point I could not breath and became dizzy. I start itching like a heroin addict looking for a fix and my body broke out into hives. As much as I hate calling 911 for an ambulance to rush me to the hospital, last night was no time to be hating.
By the time they arrived, I was still struggling for air, itching like mad, and my blood pressure was off the charts. The EMT's were great they hooked me to some oxygen, put the IV in with one stick, shot me with some benadryl and rushed me to the hospital. I felt that I was dying...I obviously survived because I would not be writing this post.
After hours in the ER hooked to the machines while oxygen flowed through my nose and a shot of Medrol I pulled through. I do not care how rare this reaction one can have being on Copaxone is, I am through with Copaxone. I trusted my doctor the first time I had an IPIR reaction and she said, "Its so rare and random you will probably not experience it again. Copaxone is working so well for you I do not think you should stop taking it". Hell, the second time came less than six months from the first time and it was worse.
Fool me once shame on you, fool me twice shame on me...No! No! No! to Copaxone
It is time for me to do research on the other disease modifying drugs except Avonex (been there done that). I have a feeling when I talk to her later today and she have me come in she will suggest Tysabri. Personally, I am not feeling Tysabri and I do not know enough about Rebif and Betaseron. I do know I want to continue to slow the progression of multiple sclerosis, so I have no choice put to select another disease-modifying drug.
I get so frustrated with MS and its unpredictability; I damn sure did not think my evening would end with an ER visit. I had romantic plans after receiving some unexpected roses and a beautiful card from my better half. Well, all is good now...if any of you have insight on Tysabri, Rebif, or Betaseron enlighten me. I still plan to research the drug, but it would be nice to know how it has been for any of you who are taking one of the three I have to choose from.
I was too chicken sh*t to try Tysabri and I did not want to go through the motion of taking Rebif or Betaseron. Therefore, I went back on Copaxone in May 2008. Hopefully, I will not have another IPIR.
Wednesday, April 9, 2008
That is all I could say when I took a test to see how long I can expect to live. I actually cannot complain because I use to think I would be a goner before the age of 40. According to the test my life expectancy is 64.5...I guess I better get a lot of living in for the next 7,780 days :)
I dare you to click here to find out how long you will be around.
Tuesday, April 8, 2008
My mind has been on overload since Saturday morning. I pushed what I thought I felt out of my mind when I was showering. As I began to get dress for the walk, I decided to check again to ease my mind. Damn, it was still there. My mind start thinking about my ex mother-in-law and my first cousins who all had double mastectomies because of Breast Cancer. I had to push those thoughts back because I had something important to do; my thoughts were taking me to a place I did not want to visit.
The walk is over, I have no more excuses to ignore THE LUMP I felt. I checked again to make sure I was not imagining the small acorn size lump. Nope I was not imagining it; it is still in the same location when I first discovered it. I start cursing myself for cancelling my mammogram appointment in December 2007. That was the first time I ever cancelled, I just did not feel like having my breast smashed down to a thin pancake. What a fool I was, I am now thinking if I had not cancelled, maybe what I feel now would have been spotted and today my mind could be at ease.
My mind wants to go to when I witnessed my ex mother-in-law and first cousins journey of battling breast cancer, the surgery, and finally the reconstructive surgery. I know the mind can play terrible tricks and right now, my mind is playing terrible tricks on me. I refused to allow my mind have me think THE LUMP I felt is CANCER. I have to wait until May to have the mammogram; I am going to try my best not to worry myself to death until then.
From my mouth to God's ears…as of today when I publish this post, each and every time my mind strays to THE LUMP, I will focus my mind on something positive until I have confirmation what THE LUMP means to my well being.
Monday, April 7, 2008
This year walk was fantastic…I did not let the pain I was feeling in my right leg STOP me from walking. I mustered all the energy I could retrieve, put on a smile and walked with my family, friends, and Melrose High School JROTC student volunteers, lead by 1st Sgt and my husband.
Words could not express who it felt to have all of them joining the movement because of me. I also humbly appreciate all the monetary donations made on my behalf to further research for a cure, educate the public, support for people and their family that live with ms, and most of all to be there for those who are newly diagnosis.
I will never forget the support I felt when I contacted the National Multiple Sclerosis Society when I was newly diagnosis, the “Knowledge is Power” series helped me to accept and learn how to live with MS. My commitment is to support anyone living with MS or a family member who needs to talk to someone that lived with the many challenges MS throw our way. ..I am just an email or comment away. :)
I made it as an Elite Member again this year! This year Elite shirt is shaarrp; it is cold black with the words "Join The Movement" tastefully printed across the front in white. The back of the shirt has MS printed in gray with a white slash and National Multiple Sclerosis Society Mid South Chapter printed below in white.
This picture is special to me because it is of all the people that join the movement on my behalf and it was wonderful to see the students (in orange shirts) for the first time in their lives to visit Shelby Farms (there are actual buffalos there). Many of them express to me their joy of participating and having the chance to meet so many people from different backgrounds. One actually said, "It was nice to witness an area outside of my community where I hear nothing, but gunshots. I now understand what your husband speeches are about when we are in class. I want what he talks about in class and I plan to work hard to achieve it. I feel our school has been bless when he transferred here last year."