Living with multiple sclerosis is like a box of chocolate. You never know how it will affect you the next minute, hour, or day. I refuse to let MS control my life...what about YOU.
Monday, December 31, 2007
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).
Labels:
Family,
Love,
Multiple Sclerosis,
Nerve Tremors
Friday, December 28, 2007
Out with the OLD In with the NEW
My resolution for the New Year is to continue to live life as if each day is my last and continue a positive attitude as much as possible while living with the unpredictable illness of Multiple Sclerosis. I have goals in mind, but I am superstitious about talking about them. As I achieve them, I will blog about it.
Wishing everyone who read this blog a SAFE and HAPPY NEW YEAR! Leaving for Texas Sunday to bring in 2008...I'll be around again next year.
Baby Girl
This evening should have never happen. I am sorry for what I said to you and I forgive you for what you said to me.
There is a first time for everything and this was our first and hopefully last argument. We both stand firm when it is about principle. You are more like me than I realized, neither one of us wanted to give in. As I think about our argument you had a valid point and I hope you realize once your anger subside that I had a valid point.
When you left out of the house upset with me, I prayed to God to keep you safe. I hope you did not mean what you said. I am writing this post to you because I know you read my blog. Call me.
My LOVE is unconditional; I would lay down my life for you. I will always be there for you.
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UPDATE (2 hours after posting)
After posting this post, I could not stop thinking, “What if something was to happen to me or my Baby Girl and the last conversation between us was an argument”. I do not think either one of us would be able to forgive ourselves.
Knowing my Baby read my blog was a coward way to say I am sorry. It was also out of pride and stubbornness not wanting to pickup the phone to call her after she stormed out of my house. As mature adults, we can still be childish at times.
I called my Baby to tell her I was sorry for my words in the argument and that I wanted her to come back home. She is home because of the Holidays and I do want to spend every moment I can with her. I honestly was no longer angry with her when she closed the door to leave and I should have stopped her before she drove off. Pride and Stubbornness stood in my way at the time.
Life is too short to allow Pride and Stubbornness to stand in the way of someone you LOVE.
She will be home in the morning.
Wednesday, December 26, 2007
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.
Tuesday, December 18, 2007
It‘s Worse Every Year
I completed my Christmas shopping at the beginning of the month. I set a budget on how much I was going to spend and I stuck to it. I had a little left over, so I decided to buy some small items to go into Christmas stockings for my grandchildren and my little friends in the neighborhood. Of all days, no store I went into had enough cashiers; the lines were so long it was unbearable. One store literally had one cashier, what a joke. I left the store after spending the time to find the items I wanted.
I left the house feeling like Santa Claus...I came home the Grinch.
Monday, December 10, 2007
Time To Apply For NMSS 2008 Scholarship
I almost forgot, but it is not too late. Let you children and friends who are living with MS or who have a parent with MS know it is time to fill out the National Multiple Sclerosis Scholarship.
Download the following application and submit it by January 18, 2008. If you have any question click on this link for facts, questions, and answers.
The following is who is eligible to apply for an NMSS scholarship.
1. High school seniors who have a parent with MS who will be attending an accredited post secondary school for the first time.
2. High school seniors who have MS and will be attending an accredited post secondary school for the first time.
3. High School (or GED) graduates of any age who have MS and who will be attending an accredited post secondary school for the first time.
4. High School (or GED) graduates of any age who have a parent with MS and who will be attending an accredited post secondary school for the first time.
5. Applicants must be either a United States citizen or legal resident who plans to enroll in an undergraduate course of study at an accredited two-or four-year College, university, or vocational-technical school located in the United States. Applicants must be enrolled in at least six credit hours per semester in course work leading to a degree, license, or certificate.
Sunday, December 9, 2007
What Is This World Coming To
With the high price of gas, we are all looking for the bargain price. At Kroger, customers get 10 cents off a gallon for purchases over $100.00. Of course, if you can save 10 cents on a gallon it is a no brainer to go to Kroger and gas up your vehicle.
Out of all the people in line, a man decided to start a confrontation with my husband. My husband was the only black man at the gas station at the time and he was doing nothing different from any of the other customers. He was patiently waiting his turn for the pump. I pointed race out because I believe the man who started this confrontation was a bigot.
My husband pulled to the pump and gas up, out of know were the man started a verbal confrontation with him. My husband did not provoke the confrontation to another level, but he sternly advised the man he was there for the same reason everyone else was there and to leave him the f**k alone and to go about his business because he was through talking. I know my husband when he said he was through talking he was through talking, being retired military he went into his military training mode in the event this man approach him in a threatening manner.
My husband notice the man go into his trunk and retrieve a tire iron, but he was through with his business and he headed home. While he was driving home, he called me to call the police to meet him at the house because the man starts following him. I dialed the police to inform them of the situation and I stated if the man pulls onto my property, I would not be responsible for what may happen; I retrieved my husband’s 45.
Knowing how crazy this world is and after getting that type of call from my husband, I armed myself to protect my husband and myself in case the police did not arrive in time. Fortunately, the police arrived a couple of minutes after my husband pulled into the driveway and the man who wanted a confrontation kept going. I was thankful I was not put in a position to do bodily harm to another human being. The police confirmed the man was a known troublemaker when they recognized the description of the man and his car given to them by my husband. The officers recorded it as an incident report in case my husband ever run into this person again. This way if my husband path crosses this bigot again and my husband hurt this man protecting himself the law was aware of a previous incident.
This incident comes on the hills of a good friend of ours who was in an altercation at a service station in different municipality just a couple of weeks ago. What in the he** is this world coming to? In all my years of living this is the worse I have seen our country. People can’t go to school, to the shopping malls, and now gas service station without some crazy sh*t happening.
Marvin Gaye song about crazy sh*t 36 years ago and this country is going backwards instead of forward.
What's Going On!
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Labels:
Gas Station,
Marvin Gaye,
Schools,
Shootings,
Shopping Malls
Friday, November 30, 2007
INSOMNIA
I have not grieved as I am now since the death of my maternal grandfather 25 years ago. I am carry on with my daily activities, but I feel as if I am just going thru the motions. Since Mary’s death, I have not been sleeping well. I finally took an Ambien 10mg Tuesday and Wednesday night to no avail. My doctor called the pharmacy and prescribed me Klonopin to take with my Ambien.
I was hoping I did not have to take a Klonopin, but as I began to type my thoughts, I decided I should. However, I thought it was best for me not to take another Ambien along with it, since I been taken Ambien from prior days. I hope the Klonopin is effective tonight, because the pain I feel from multiple sclerosis is breaking through with a vengence while I am wearing a Duragesic Patch. I do not think it would be wise to take a Lortab for this break through pain tonight since I have taken a Klonopin. I lived with multiple sclerosis long enough to know I am on the verge of an exacerbation. The last thing I want now is to have a Solu-Medrol Infusion because of an exacerbation.
It was months before I was able to move on grieving my grandfather 25 years ago. For the sake of my health, I have to find peace with Mary’s death. I thought I found peace when I felt her presence during my daughter’s wedding. Today, I had to stop myself from picking up the phone to call her. When that happened I was mentally back, to the morning she died and that unbearable sadness engulfed me all over again.
Inspirational music is a comfort for me and tonight I choose this to give me peace to get through the night. I look forward to waking up tomorrow with a renewed strength.
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Labels:
Ambien 10mg,
Duragesic Patch,
Grieve,
Insomnia,
Klonopin,
Lortab 10mg,
Solu-Medrol
Wednesday, November 28, 2007
An Angel Received Her Wings
The following is the last email I will ever receive from Mary:
Subject: Friday
Date: 11/21/2007 8:01:32 P.M. Central Standard Time
From: maf921@sbcglobal.net
Reply To:
To: EDEETT@aol.com
Hey Debra,
See you Friday afternoon. I can't find my bridal shower invitation is it
Friday or Saturday? HAPPY THANKSGIVING!!!!!!!!!!!!
I am in a better place after the death of my good friend Mary. She was on her way to Tennessee to attend my daughter’s wedding. Unfortunately, for those of us who loved her God was ready for her to come home. I was with her husband when we arrived at Crittenden Memorial Hospital and saw that she was dead when we looked into her hospital room.
Mary would have never made the trip to Tennessee if she thought the cold she was suffering with was more than a cold. Mary suffered and lived with pulmonary sacroidosis that developed into pulmonary fibrosis (the abnormal formation of fiber-like scar tissue in the lung). This actually distorts the structure of the lungs and can interfere with breathing, especially the ability to exchange oxygen in the lungs.
The attending physician at Crittenden Memorial Hospital said her body received too much oxygen. A normal oxygen level should be around 35 and her level was over 120. He said, in cases like hers when mucus build up the patients turn up the oxygen level on their tank thinking it would help their breathing when they are having difficulties breathing. It is the wrong thing to do because too much oxygen shuts down the body.
I have said it before and I will say it again, when you live with a chronic illness, it is not the illness that will eventually kill you; it will be the medication we take to control our illness that will kill us. Oxygen is what killed Mary just as methotrexate almost killed me last year.
Regardless of knowing, I live with an illness with no cure and Mary lived with an illness with no cure. I refuse to live my life as if it is over. Mary was the same way, she lived life to the fullest and I take comfort in knowing when she died she was happy. At first, I felt guilty because she was on her way to visit with my family, and me but she loved to travel and she loved attending weddings.
Matter of fact, it was at the wedding when the heaviness of my heart lifted. I felt Mary’s presence in the church and at the reception as I was living the Botanical Gardens I felt her stamp of approval that the wedding was a beautiful and loving occasion.
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Labels:
Angel,
Death,
Friendship,
Mary Ford,
pulmonary sacroidosis
Saturday, November 24, 2007
How Do You Mend A Broken Heart
Tonight should be a time of happiness and joy because my daughter is getting married tomorrow evening. I cannot stop my tears and my heart feels as if it is broken in a million pieces. I cannot believe she is gone.
I should not be questioning God, but I am. Why did he take her so suddenly and without warning? My mind will not let me rest because I have so many questions.
My good friend Mary died this morning in a hospital 40 minutes away from my home.
She was on her way to celebrate the marriage of my daughter tomorrow. I do not know how I am going to make it through what should be a happy occasion, this pain is worse than the pain I live with having Multiple Sclerosis.
Mary I am going to miss you! What am I going to do without you?
I should not be questioning God, but I am. Why did he take her so suddenly and without warning? My mind will not let me rest because I have so many questions.
My good friend Mary died this morning in a hospital 40 minutes away from my home.
She was on her way to celebrate the marriage of my daughter tomorrow. I do not know how I am going to make it through what should be a happy occasion, this pain is worse than the pain I live with having Multiple Sclerosis.
Mary I am going to miss you! What am I going to do without you?
Friday, November 16, 2007
Dwight Fryer
Dwight Fryer was FANTASTIC, we had a good time last night, but I came home exhausted and feeling some extra pain. I will not be posting until after the holiday. I have family coming in for Thanksgiving and I have a daughter getting married the Sunday after Thanksgiving.
I am praying I do not have an exacerbation with all that is going on.
Monday, November 12, 2007
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.
Labels:
drug pump,
Intrathecal baclofen,
Multiple Sclerosis
Thursday, November 8, 2007
Circle of Friends
The Circle of Friends Book Club is hosting a program with the award nominated author, Dwight Fryer, who wrote The Legend of Quito Road on November 15, 2007 at the Millington Civic Center. As President of the Book Club, this blog post is an official invitation to join us next Thursday evening.
To learn more about the Circle of Friends Book Club read my interview in next week Millington Star Newspaper and check out my first freelance article in the Commercial Appeal My Life section.
ps
If you are interested in joining The Circle of Friends we meet every third Tuesday of the month at various locations. Drop me an email for more details.
Sunday, November 4, 2007
Bohemian Rhapsody
It started on Halloween, my right leg buckled with pain while I was running errands. Pain puts me in a depressive state of mind. Guilt starts building within me because I feel helpless when I become bed ridden because of pain. This time I chose not to feel guilty laying in bed for days.
Finally, this classic brought me out of my depress state.
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Monday, October 29, 2007
Thursday, October 25, 2007
Wednesday, October 24, 2007
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.
Monday, October 22, 2007
Althea WON!
This beautiful young lady met my daughter while they attended Vanderbilt University. The very first time my daughter start bringing her home on visits, I knew they were going to be life long friends. Since their graduation in May 2007, Althea decided not to start graduate school at Columbia University for a year to continue working for one of TN’s State Senators and compete in pageants for scholarships to continue her education.
She was first runner up in the 2007 Miss Black Tennessee Pageant and she WON the 2007 Miss TN International Pageant
C O G R A T U L A T I O N S! Althea
You are continuing to make your second Mom proud.
ps
Althea is in the black dress
Friday, October 19, 2007
Happy Birthday!
I remember the day as if it was yesterday; it's hard to believe it’s been 25 years ago. You brought a smile to my face that day and I been smiling every since because you were the first of the two most precious gifts I received in my life.
You filled the first half of a mold that was broken. I couldn’t have asked for one of the most loving, compassionate, smart, independent, good, kindest, no nonsense daughter.
With All my LOVE
H A P P Y – B I R T H D A Y
Thursday, October 18, 2007
I Don’t Think She Learned Her Lesson
Shelly Brown is the other woman in my husband’s life. My husband and I picked her out of a litter of pups from a friend of ours in Louisiana; she stood out because she was the only brown and white pup in the litter. She back to Tennessee in my lap and you would think our bond was established during the long drive home. My husband thought it would be a good idea to bring another woman in the house to keep me company while he was at work.
Let me put it this way she is in love with my husband and she tolerates me. It took awhile for me to get it in her head I was the only Queen and we had many battles to get to that understanding. I know this sounds crazy, but Shelly purposely tried to get me in trouble with my husband. I never abused her, but in the early years I would put her out in the garage until he come home when she makes me mad.
I have many stories about Shelly and if I was to blog about it you would think I was crazy, my family and friends thought I was crazy until they start witnessing Shelly’s cunningness. There were time I wanted to give her way, but now that we have an understanding I would miss our love/hate relationship. Shelly finally met her match; she’s been antagonizing a tom cat as big as her when she goes out. Last night when my husband came home she did what she always to go to him for a daily rub down, but this time my husband noticed she looked as if she’s been hit by a car.
I never noticed because when I am upstairs she is downstairs and vice versa that's our relationship when we are alone. We just had her groomed last Friday and when I looked at her after my husband asked me if she’s been hit by a car. I did notice she was more timid than usual and looked as if she wasn’t groom a few days ago, I felt bad that I didn’t’ notice something was wrong with Shelly.
I took her to the Pet Salon to get groomed again and asked them to check her out to see if she’s been hit by a car, it turns out the oil, dirt and what appeared to car marks were signs of Shelly being in a fight. Once Amy told me she looks like she was attack by a cat it all made since. The tom cat Shelly been harassing when she is out took revenge on her. Shelly was lucky the tom cat claws didn’t go into her deep and it was in the back, he could have gouge her eyes.
I was just telling my husband when we were out in the yard Saturday and Shelly broke and chased the tom cat that the cat was going to get tired of Shelly harassing him when they were both outside. Maybe she learned her lesson only time will tell. Anywho, she is acting like herself again after receiving her medicated shampoo and ointment and she is downstairs while I am upstairs, I wonder what lie she is going to tell on me when her Daddy comes through the door this evening.
Still I Rise
Maya Angelou’s poem “Still I Rise”
gave me strength living in America as a black woman, but today it also gives me strength living with multiple sclerosis. I considered myself in a fight for my life the day I was told I had MS. All I could vision on my tearful ride home from the neurologist office was Richard Pryor. After thinking of Richard which I knew the end was near for him, I thought about Montel Williams. I do not know about others who live with MS, but for me every day is a struggle. I fight every day just to get moving, that’s why I try to stay busy doing something. I have met and know several people with MS who had given up and they are now just wasting away. They are bed ridden, blind or sitting in a wheel chair sooner by giving up instead of fighting. By looking at me from the outside you wouldn’t know I have MS, which is why I tell people do not judge a book by its cover.
I want to continue to have the use of my legs, eyes, and not be totally depended on my family because I am bed ridden. I know that is my future, but I also know as long as I keep a positive attitude and a fighting spirit I will delay it for years or I just might never experience going blind, loosing the use of my legs or become bedridden all the things I fear most living with MS. That is why I know I have to continue to fight the invisible symptoms o MS no matter what the risks are from the medications.
The month of November is a busy month for me and MS is trying to rear its ugly head. In this order, as President of a book club I have Dwight Fryer, author of The Legend of Quito Road as The Circle of Friends Book Club guest for a reading and book signing to prepare for, I have family coming to town for the Thanksgiving holiday, and finally I have my step daughter wedding to prepare for and attend the Sunday after Thanksgiving.
The Duragesic patch and Cymbalta is giving me relieve from pain and tingles, but lately I am having terrible headaches and spasticity is now creeping in my body. It’s like my body knows I have plans and its trying to bring me down. I am good at giving others good advice, but it’s time for me to take my own advice. That’s why I blog to remind myself of that fighting spirit that’s in me, as another way to communicate to my family on how I am feeling, and hopefully to inspire others not to give up.
I am not going to lie my experience with IPIR scared the hell out of me and I wimped out taking my shot last night. I got to thinking about Still I Rise and from that I regained a new strength. I WILL be taking my shot tonight and I WILL NOT let the rising symptoms from MS that is rearing its head take me out. Knowledge is Power and I gained enough knowledge about how to handle my MS to battle my symptoms when they creep up on me.
I am in a fight, but in the end STILL I RISE…I RISE!
Labels:
IPIR,
Knowledge Is Power,
Living with MS,
Maya Angelou,
Richard Pryor
Wednesday, October 17, 2007
Side Effects
I honestly believe my death will be because of a side effect from one of my medications I take for multiple sclerosis. I use to believe side effects from medication would happen within three days of taking a new medication. My realities of that belief was diminished when methotrexate went toxic on me in June 2006.
Another reality of side effects hit home last night when I had a reaction after injecting Copaxone. Immediately after my injection my chest felt as if it was being crushed and I couldn’t catch my breath. I felt as if I was about to die from a massive heart attack. Thankfully, that crushing feeling start subsiding after five minutes, but the shortness of breath lingered on for another five minute. Of course my husband wanted to call 911, but I assured him I was going to be fine. To be honest I was worried about what happened and I couldn’t wait until the next morning to call my neurologist to find out what happened.
I was anxious to know what happen and I couldn’t wait any longer to hear back from my neurologist, so I called the Copaxone Shared Solution hotline. After explaining my symptoms to the nurse she advised me not to take the shot tonight until after I hear from my neurologist to see what she want me to do. The nurse from Copaxone told me I had a rare side effect from Copaxone that is called Immediate Post Injection Reaction and from studies of Copaxone it happened to about 10% of the people in there clinical trials, but it is not and should not be fatal. Hmm, that is easy for them to say, but it is not comforting if you experience it.
Well, my neurologist seem to think the same because she advised that I take my shot tonight because that reaction is so rare and random that it may not ever happen again. Once again that’s easy for her to say, but not comforting to me. Since this was the first time I experienced an IPIR, I will take my injection tonight with reservations. If I experience IPIR again, I might rethink my decision to take Copaxone. The only reason I decided to continue using Copaxone is because my MRI’s have been stabled for the last several years of having no new brain lesions. So for now I have to suck it up and be a big girl and take that dang shot tonight.
Tuesday, October 16, 2007
Music Is Good For The Soul
Like clock work every morning when I was a young girl waking up in the morning for school, the first song played on the radio station. God works in mysterious ways; little did I know the first song would have such a profound meaning to me today at this very moment. The second song was my anthem when I was in a terrible first marriage. It brought me through the darkest moments in my life and it will bring me through the darkest moments of multiple sclerosis.
I know longer ask why me for being stricken with multiple sclerosis. I accepted my faith and I try to live the most productive life I can, but it just seems as if there is a force that try to keep you down. That force for me is PAIN, every time I think I have conquered or found a remedy to help me with my PAIN it rears it's head in another direction.
I promised myself when I allowed PAIN to get the best of me in July I would NEVER EVER get that desperate to rid myself of PAIN. Therefore, this PAIN in my HEAD that is whipping my a** step back because I will not allow you to get the best of me. Because...
Jesus Is The Best Thing
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And
I Will Survive
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Side personal message to this second video.
Ladies and men (if it applies)...listen carefully to the words in "I Will Survive" if you are in an unfulfilling, abusive relationship this song will eventually get through to you. It will give you the strength to move on and it is best to move on while you still have love in your heart. If you have children don't waste it on someone because of the children, you will be doing them more harm than good if you stay.
Yes, it is scary to step out on your own especially if you entered the relationship as one and you are leaving with an additional two (in my case). As I look back leaving my daughters father when they were very young was the bravest act in my life. Had I listen to my father and stayed because of the children I might have ended up like Nicole Brwon Simpson or Mary Winkler and Men you can end up like many of the men showcased on "Snapped".
You can't change the other person in a bad relationship; you can only inventory yourself and changed your negative behavior you may have adapted in the unhealthy relationship. I always prayed for a loving man and I started to think they did not exist, that's only in the movies. I thank God everyday I took the leap of faith to open my heart again because the way my present husband and I met, it was meant to be.
I literally had one foot out the door because I did not see a mutual friend of ours at the time at her birthday party. It was he my (soul-mate) who located our mutual friend to stop me from leaving the party because I did not see her after arriving and searching the establishment looking for her. You see my husband and I did not travel the same social circle that night was the first and could have been the last night we would have had a chance meeting.
Because of him my daughters had an upbringing with a man that is more their father than their biological father could ever be. I will never understand a man or women who pull their emotional support from a child when the relationship ends. I thank GOD every day for stopping me from leaving that birthday party in September 1991. When I allowed opening my heart again and eventually introducing my soul mate to my daughters nine months later, my life forever changed. I allowed myself to love again without taking my past baggage and baggage with me.
I was blessed with a man who was not afraid to show his love me and my daughters and did the same with his son and daughter. He provided me with a man that did not pull his emotional support from his biological children. He provided me with a man who rescued his children from a mother who did not and would not protect them from the man in her life. He provided me with a man who worked and works hard to provide his family with a comfortable life and who wasn't afraid to tell us NO. He provided me with the strongest, smartest, loving, and compassionate man I know. Who would have thought I would be living my dreams of a perfect relationship while I live with an illness that is so unpredictable it would make most people run for the border.
If he could I know he would take away my PAIN from ms and take it upon him so I could be pain free. The words in the song "I Will Survive" saved my life in more ways than one. Finally, heed the words in the song and move on from an unhealthy relationship.
Labels:
Gloria Gaynor,
James Clevland,
Pain,
Surviving
Thank You For The Memory
I read about Mr. Ernest C. Withers in my Arts Appreciation class. One day in the summer of 2005, my husband and I were enjoying a beautiful mild summer day walking Beale Street. We noticed Mr. Withers photography studio, I suggested we go in because maybe we would have a chance to look at some historic pictures. To my surprise Mr. Withers was there sitting in his oversize chair, I was honored to be in the presence of famous photojournalist. He shared his story and pictures photographing history with us. Spending time in Mr. Withers studio that summer is one of the most memorable moments in my life and I dedicate this post to his memory and thank him for documenting a part of my history in photographs. A picture is worth a thousand words.
Rest in Peace Mr. Ernest C. Withers
Friday, October 12, 2007
Nerve Pain Is Different
In the beginning it was hard for me to distinguish my pain because I experience pain in the joints, muscle, and nerves. All I knew was I was in pain and I wanted it to stop. Now that I know how to distinguish my pain, I know what pain medication works for me which is Cymbalta for my nerve pain and the Duragesic patch for my joint and muscle pain.
The following is an article from the National Multiple Sclerosis Society Mid South Chapter newsletter called the Connection. It is about nerve pain and I can vouch for Cymbalta when it comes to nerve pain it is also an anti-depressant. That’s one capsule that attacks two symptoms of MS and I highly recommend it over Neurontin. Why take three Neurontins a day that only helps with nerve pain when you can take one Cymbalta that helps with nerve pain and depression?
All pain is transmitted by nerves, but nerve pain is different. "Phantom limb pain" is a vivid example of "neuropathic" or nerve pain. This type of pain originates in the central nervous system in injured nerve pathways, not in the bones or muscles. A person with phantom limb pain feels pain in a body part that was amputated in the past.
MS lesions can injure nerve pathways and produce neuropathic pain - or unpleasant sensations called dysethesias (or "di-es-THESE-ee-ahs"). The burning, aching, stabbing, prickling, or itching may start and stop or drag on. MS lesions may also cause "allodynia" (Al-oh-DIN-ee-ah") - which is pain from something that shouldn't be painful. A soft touch, the weight of bed covers; even a cool breeze can be the trigger.
Neuropathic pain is not soothed by the over-the-counter medications that work on muscle pain. Even powerful prescription medications such as Percocet, Lortab, Oxycontin, or Darvocet are not effective for this kind of pain.
Instead, physicians need to prescribe medications that work on nerves. They may be anti-convulsants (such as Tegretol, Dilantin, or Neurontin), antidepressants (such as Elavil), or new drugs approved for diabetic pain (such as Lyrica or Cymbalta). It's not uncommon to try out several drugs to find what works best.
Tuesday, October 9, 2007
Super Bowl Here We Come
The Associated Press said it best "The unflappable Romo overcame five interceptions and a lost fumble to lead two last-minute drives, and rookie Nick Folk kicked a 53-yard field goal as time expired, giving the Dallas Cowboys an improbable 25-24 victory over the Buffalo Bills on Monday night". Sorry Bills I know that was a hard loss.
I can't wait for Sunday mega match up against the New England Patriots.
Monday, October 8, 2007
Get Well Soon
For some odd reason Disabled Not Dead blog site freezes when I visit. Anne, if you are able to surf the blogoshpere while you are dealing with your pain, I wanted to let you know I am thinking of you and hope the pain in your jaw gets better. I truly know how you are feeling right now and I pray that pain don't last too long in your jaw.
I once had that jaw pain and I went to the dentist thinking that was the doctor to see. Turns out it was not a problem for the dentist it was pain from having a multiple sclerosis flare. Thankfully for me it lasted three days. I pray it is a flare that will not last long for you and nothing more serious. Take care of yourself and I will continue to check in on you.
While I am at it I also want to wish nothing but good news for NewComa from her doctors.
Inviting Myself
Monday, October 1, 2007
The Best Medicine
After all that cooking this weekend, I had a hard time getting up and moving about. Thankfully, I already baked my pineapple upside down cake for dessert. I put on a new Duragesic patch and in a matter of minutes I felt doped. I felt like I was floating and out of body it scared me. The last time I felt that doped up was when I was on a higher micro gram of morphine. I was alarmed to feel that way immediately on such a low dosage.
I hate feeling doped because I am not in control and I flashback to when I had a toxic reaction to methrotrexate. My breathing became a little shallow and my instinct was to take the patch off. I didn’t want to take the patch off because the pain in my legs dissipated. I played devils advocate and told myself no matter what if my breathing and doped up feeling didn’t go away within two hours I was going to remove the patch.
I drifted off to sleep and I thought I heard voices over me, when I open one eye my little man said, “Hi Nana” with the biggest smile and jumped on the bed and gave me a big hug. My daughters asked if I was okay because I was in bed, I didn’t want to worry them and told them I was fine, dinner was ready and I will be down in a minute. This Sunday was very special to me because all my girls and my favorite little man was over visiting. It’s been awhile since all of them were home together.
I knew I wasn’t in the right frame of mind to be in the kitchen to cook Sunday’s dinner. Thankfully, I prepared so much food the prior two days I didn’t have to. I had some turkey legs I smoked in the freezer. I defrost my smoke turkey legs and cut the meat off the bones and made a light gravy and poured it over the legs and threw them in the oven. I took a container of pinto beans, chicken/sausage gumbo, and green beans out and placed them on top of the stove to heat. Made a pot of rice in my rice cooker and walked away. The only item I had to prepare was a pan of cornbread and my dinner was complete for Sunday without breaking a sweat or stumbling around.
LOVE is the BEST medicine around!
Summer To Fall
I was a cooking maniac this past weekend. The only reason I stopped cooking Saturday night was because my legs couldn’t take it anymore. My Duragesic patch was to come off Sunday morning and I guess I didn't have enough medicine left in my patch to keep me going.
When I was younger you couldn’t get me in a kitchen. I remember my father telling my mother she needs to make me come in the kitchen with her so I can learn how to cook. My mother never made me; she said if I didn’t want to learn it would be a waste of time. I enjoyed watching her cook back in the day and she was and still is today the best cook I know.
I remember like it was yesterday when I married for the first time how my father came over to my house with two cook books and told me I was going to need them. The two cook books didn’t teach me how to cook, it was having a family to feed and a new found love of cooking. I was on the phone everyday with my Mom or my Dad asking them how to cook this or that. The first time I tried to cook pinto beans they were so hard you could throw one and break a window.
When the fall season comes around I like to cook and freeze some dishes because the seasoning is richer. By the time my legs gave up on me I had cooked pinto beans with ham hocks, navy beans with ham, chicken/sausage gumbo, chicken dumplings, chili, and spaghetti sauce. Since it is just my husband and I living at home I store my food in smaller containers, if I have a large gather I just pull out more than one container.
The best cooks are the ones who weren’t forced to cook at a young age. I never forced my girls to cook and each one of them knows how to cook like grandma. No box food for them if they don't know how to prepare something, they call me like I use to call my Mom. They have been asking me to make them a recipe book for the longest, this year they will finally get their wish. I've been working on a recipe book of all their favorites and more to give to them this Christmas.
Monday, September 24, 2007
Words To Live By
Do It Anyway...by Martina McBride
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You CAN spend your whole life buildin'
Something from nothin
One storm can come and blow it all away
Build it anyway
You CAN chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway
God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
I do it anyway
This worlds gone crazy
And it's hard to believe
That tomorrow will be better than today
Believe it anyway
You can love someone with all YOUR heart
For all the right reasons
And in a moment they can choose to walk away
love em anyway
God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yeah I do it anyway, YEAH, YEAH
You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway, YEAH, YEAH
I sing
I dream
I love anyway, yeah.
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You CAN spend your whole life buildin'
Something from nothin
One storm can come and blow it all away
Build it anyway
You CAN chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway
God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
I do it anyway
This worlds gone crazy
And it's hard to believe
That tomorrow will be better than today
Believe it anyway
You can love someone with all YOUR heart
For all the right reasons
And in a moment they can choose to walk away
love em anyway
God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yeah I do it anyway, YEAH, YEAH
You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yeah sing it anyway, YEAH, YEAH
I sing
I dream
I love anyway, yeah.
I Don't Think I Could Go On If Something Happens To One Of Them
A parent worst nightmare is receiving a phone call in the early morning or late night. My two oldest daughters were in separate car accidents. The first accident was in the first week of September, the second one was this past Thursday. My heart dropped each time I received that dreaded phone call and to hear your grandson over the phone crying Mommy my head hurt have you imagining the worst.
I THANK GOD my daughters and grandson did not suffer serious injuries. I never want to know what its like to loose a child before I leave this earth.
Sunday, September 23, 2007
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.
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.
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