Friday, May 30, 2008
It feels WONDERFUL to be back to myself. My burns are healed and my mind is back from hell. I beat myself up for allowing symptoms of MS take me down the way it did. It is not as if I do not know what I am living with and what I need to do to stay in control of my life living with MS.
The worst thing I or anyone else can do to themselves is allow depression to swallow you up. Admitting depression does not mean you are crazy, but you freaking feel as if you are when you are engulfed with depression. Many people will not admit when they are depressed, but I hope if you are reading this and you feel depress or know someone who is do not be afraid to seek help.
Not everyone get a chance to go to hell and come back!
Thursday, May 29, 2008
Once upon a time, there was this girl who had four boyfriends.
She loved the 4th boyfriend the most and adored him with rich robes
and treated him to the finest of delicacies. She gave him nothing but
She also loved the 3rd boyfriend very much and was always showing him
off to neighboring kingdoms. However, she feared that one day he would
leave her for another.
She also loved her 2nd boyfriend. He was her confidant and was always
kind, considerate and patient with her... Whenever this girl faced a
problem, she could confide in him, and he would help her get through the
The girls 1st boyfriend was a very loyal partner and had made great
contributions in maintaining her wealth and kingdom. However, she did
not love the first boyfriend. Although he loved her deeply, she hardly
took notice of him.
One day, the girl fell ill and she knew her time was short. She
thought of her luxurious life and wondered, I now have four boyfriends
with me, but when I die, I'll be all alone.'
Thus, she asked the 4th boyfriend, "I loved you the most, endowed you
with the finest clothing and showered great care over you. Now that I'm
dying, will you follow me and keep me company?"
'No way!' replied the 4th boyfriend, and he walked away without
His answer cut like a sharp knife right into her heart.
The sad girl then asked the 3rd boyfriend, 'I loved you all my life.
Now that I'm dying, will you follow me and keep me company?'
'No!' replied the 3rd boyfriend. 'Life is too good! When you die,
I'm going to marry someone else!'
Her heart sank and turned cold.
She then asked the 2nd boyfriend, 'I have always turned to you for
help and you've always been there for me.
When I die, will you follow me and keep me company?'
'I'm sorry, I can't help you out this time!' replied the 2nd
boyfriend. 'At the very most, I can only walk with you to your grave.'
His answer struck her like a bolt of lightning, and the girl was
Then a voice called out: 'I'll go with you. I'll follow you no matter
where you go.'
The girl looked up, and there was her 1st boyfriend. He was very
skinny as he suffered from malnutrition and neglect.
Greatly grieved, the girl said, 'I should have taken much better care
of you when I had the chance!
In truth, you have 4 boyfriends in your lives:
Your 4th boyfriend is your body. No matter how much time and effort
you lavish in making it look good; it will leave you when you die.
Your 3rd boyfriend is your possessions, status and wealth. When you
die, it will all go to others.
Your 2nd boyfriend is your family and friends. No matter how much they
have been there for you, the furthest they can stay by you is up to the
And your 1st boyfriend is your Soul. Often neglected in pursuit of
wealth, power and pleasures of the world.
However, your Soul is the only thing that will follow you where ever
you go. Cultivate, strengthen and cherish it now, for it is the only
part of you that will follow you to the throne of God and continue with
you throughout Eternity.
Thought for the day: Remember, when the world pushes you to your
knees, you're in the perfect position to pray.
Being happy doesn't mean everything's perfect. It means you've decided
to see beyond the imperfections.
I hope this touched you!
Sunday, May 25, 2008
There was a time when meadow, grove, and stream,
The earth, and every common sight
To me did seem
Apparelled in celestial light,
The glory and the freshness of a dream.
It is not now as it hath been of yore;--
Turn wheresoe'er I may,
By night or day,
The things which I have seen I now can see no more.
The rainbow comes and goes,
And lovely is the rose;
The moon doth with delight
Look round her when the heavens are bare;
Waters on a starry night
Are beautiful and fair;
The sunshine is a glorious birth;
But yet I know, where'er I go,
That there hath past away a glory from the earth.
Now, while the birds thus sing a joyous song,
And while the young lambs bound
As to the tabor's sound,
To me alone there came a thought of grief:
A timely utterance gave that thought relief,
And I again am strong.
The cataracts blow their trumpets from the steep,--
No more shall grief of mine the season wrong:
I hear the echoes through the mountains throng.
The winds come to me from the fields of sleep,
And all the earth is gay;
Land and sea
Give themselves up to jollity,
And with the heart of May
Doth every beast keep holiday;--
Thou child of joy,
Shout round me, let me hear thy shouts, thou happy
Ye blesséd Creatures, I have heard the call
Ye to each other make; I see
The heavens laugh with you in your jubilee;
My heart is at your festival,
My head hath its coronal,
The fulness of your bliss, I feel--I feel it all.
O evil day! if I were sullen
While Earth herself is adorning
This sweet May-morning;
And the children are culling
On every side
In a thousand valleys far and wide
Fresh flowers; while the sun shines warm,
And the babe leaps up on his mother's arm:--
I hear, I hear, with joy I hear!
--But there's a tree, of many, one,
A single field which I have look'd upon,
Both of them speak of something that is gone:
The pansy at my feet
Doth the same tale repeat:
Whither is fled the visionary gleam?
Where is it now, the glory and the dream?
Our birth is but a sleep and a forgetting;
The Soul that rises with us, our life's Star,
Hath had elsewhere its setting
And cometh from afar;
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come
From God, who is our home:
Heaven lies about us in our infancy!
Shades of the prison-house begin to close
Upon the growing Boy,
But he beholds the light, and whence it flows,
He sees it in his joy;
The Youth, who daily farther from the east
Must travel, still is Nature's priest,
And by the vision splendid
Is on his way attended;
At length the Man perceives it die away,
And fade into the light of common day.
Earth fills her lap with pleasures of her own;
Yearnings she hath in her own natural kind,
And, even with something of a mother's mind,
And no unworthy aim,
The homely nurse doth all she can
To make her foster-child, her inmate, Man,
Forget the glories he hath known,
And that imperial palace whence he came.
Behold the Child among his new-born blisses,
A six years' darling of a pigmy size!
See, where 'mid work of his own hand he lies,
Fretted by sallies of his mother's kisses,
With light upon him from his father's eyes!
See, at his feet, some little plan or chart,
Some fragment from his dream of human life,
Shaped by himself with newly-learned art;
A wedding or a festival,
A mourning or a funeral;
And this hath now his heart,
And unto this he frames his song:
Then will he fit his tongue
To dialogues of business, love, or strife;
But it will not be long
Ere this be thrown aside,
And with new joy and pride
The little actor cons another part;
Filling from time to time his 'humorous stage'
With all the Persons, down to palsied Age,
That life brings with her in her equipage;
As if his whole vocation
Were endless imitation.
Thou, whose exterior semblance doth belie
Thy soul's immensity;
Thou best philosopher, who yet dost keep
Thy heritage, thou eye among the blind,
That, deaf and silent, read'st the eternal deep,
Haunted for ever by the eternal Mind,--
Mighty Prophet! Seer blest!
On whom those truths rest
Which we are toiling all our lives to find,
In darkness lost, the darkness of the grave;
Thou, over whom thy Immortality
Broods like the day, a master o'er a slave,
A Presence which is not to be put by;
To whom the grave
Is but a lonely bed, without the sense of sight
Of day or the warm light,
A place of thoughts where we in waiting lie;
Thou little child, yet glorious in the might
Of heaven-born freedom on thy being's height,
Why with such earnest pains dost thou provoke
The years to bring the inevitable yoke,
Thus blindly with thy blessedness at strife?
Full soon thy soul shall have her earthly freight,
And custom lie upon thee with a weight
Heavy as frost, and deep almost as life!
0 joy! that in our embers
Is something that doth live,
That Nature yet remembers
What was so fugitive!
The thought of our past years in me doth breed
Perpetual benediction: not indeed
For that which is most worthy to be blest,
Delight and liberty, the simple creed
Of Childhood, whether busy or at rest,
With new-fledged hope still fluttering in his breast:--
--Not for these I raise
The song of thanks and praise;
But for those obstinate questionings
Of sense and outward things,
Fallings from us, vanishings,
Blank misgivings of a creature
Moving about in worlds not realized,
High instincts, before which our mortal nature
Did tremble like a guilty thing surprised:
But for those first affections,
Those shadowy recollections,
Which, be they what they may,
Are yet the fountain-light of all our day,
Are yet a master-light of all our seeing;
Uphold us--cherish--and have power to make
Our noisy years seem moments in the being
Of the eternal Silence: truths that wake,
To perish never;
Which neither listlessness, nor mad endeavour,
Nor man nor boy,
Nor all that is at enmity with joy,
Can utterly abolish or destroy!
Hence, in a season of calm weather
Though inland far we be,
Our souls have sight of that immortal sea
Which brought us hither;
Can in a moment travel thither--
And see the children sport upon the shore,
And hear the mighty waters rolling evermore.
Then, sing, ye birds, sing, sing a joyous song!
And let the young lambs bound
As to the tabor's sound!
We, in thought, will join your throng,
Ye that pipe and ye that play,
Ye that through your hearts to-day
Feel the gladness of the May!
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.
And 0, ye Fountains, Meadows, Hills, and Groves,
Forebode not any severing of our loves!
Yet in my heart of hearts I feel your might;
I only have relinquish'd one delight
To live beneath your more habitual sway;
I love the brooks which down their channels fret
Even more than when I tripp'd lightly as they;
The innocent brightness of a new-born day
Is lovely yet;
The clouds that gather round the setting sun
Do take a sober colouring from an eye
That hath kept watch o'er man's mortality;
Another race hath been, and other palms are won.
Thanks to the human heart by which we live,
Thanks to its tenderness, its joys, and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
by William Wordsworth
Saturday, May 24, 2008
Tuesday, May 20, 2008
Today was the book club I am in scholarship luncheon. As the president of the club, I had to be there. I prayed I would wake up not feeling like I have been since I began swimming my way out of the “D” tunnel. Every morning I have been suffering with anxiety and panic attacks when my husband leaves for work.
Each time I feel the anxiety surfacing the panic set in behind it…the panic feels worse than the anxiety. When I am in that mode, I am tempted to pick up the phone and call my husband or one of my children. I am proud of myself each time I don’t pick up that phone because they have lives to life and if I begin to call them every time an attack comes on, I would be creating a crutch. That is why I do not call them; I do start praying asking God to help me understand why I am experiencing the attacks.
Today I had a revelation of understanding my attacks. I have become afraid of my illness because of everything that has happened since April 9, 2008 when I had a bad IPIR experience. The experience did not kill obviously, but it scared me. I felt better after receiving oxygen, Benadryl and steroids, the worse was over so I thought.
After my IPIR experience, I went through…
-Making the decision to take Tysabri without my family blessing
-Not taking Tysabri because of a weaken immune system
-Choosing to go back on Copaxone because I experience the worse that could happen and I prefer to stick with something I know that works and I know what to do if I have another IPIR…an IPIR will not kill me, but the risk of contracting PML because of a weak immune system could.
-Causing a second degree burn on my chest
-Causing a second degree burn on my arm
-Wrecking my car for the second time backing out of my garage
The burns and wrecking my car was all from not having control of my grip in my right hand.
-Waking on one morning unable to walk on my right leg…thank God that only lasted for a day.
-Falling into a depression that could have resulted in a tragedy…I thank God my husband loves me enough to be putting up with me
After today, I know my anxiety and panic attacks will get better because my prayers were answered today. The unknown of the anxiety and panic was scarier than the attacks themselves. I received a calm when it became clear to me I was allowing all the above that happen to me within the last month build into fearing what MS can do.
I cannot stop what multiple sclerosis throws my way, but I will fight the unpredictability it brings into my life. Matter of fact, each time the challenges of MS knocks my on my a$$. When I fight back against MS, I feel stronger and proud of myself…I made it to the scholarship luncheon and performed my presidential duties :)
Multiple Sclerosis is one roller coaster ride I cannot get off… but I can conform to make the ride enjoyable for the rest of my lifetime.
Monday, May 19, 2008
Obviously, from my title I am no longer being pulled into the “D” tunnel. No matter how strong we are as a person, we all have weaknesses. You know like that one interview question, “What are your strengths and weaknesses”, I never gave an answer to the weakness aspect of the question. I always talked about my strengths. It is human nature NOT to admit our weakness.
I finally admitted my weakness since my last post to my husband, children, mother, father, and siblings. There was a time I would never admit I was depressed and I damn sure would not reach out for help. My father is the reason why I was like that because according to him there is no such thing as depression...it's all in your mind and some bullsh*t doctors come up with. In his defense I know he no longer believe what he believed all his life. I would go into the details why he no longer believes that, but I only reveal my family life experiences on my blog.
This last depression wave came on swift and powerful, hell I thought I had a handle on it. I became so out of control my husband was thinking of having me committed. Yea, that's how bad I spiraled. Come to find out my doctor was already informed. At first, I was offended because I thought my family plotted on me, but in hindsight, they wanted to protect me.
Had I not reached out to them and told them I needed help, I probably would have been involuntarily committed. Now that is some scary sh*t, but as my husband but it my behavior was some scary sh*t.
Depression tried to take me down into a tunnel and I could not fight it alone...I was trying, but I was loosing the battle. I thank God I had the courage to let go of my pride of appearing weak and reached out to my family. I am not all the way out of the tunnel, but I am not falling further down.
There was nothing wrong with admitting I needed help when my burdens became too heavy for me to carry. Ministry through music also helps me when the "D" Express becomes more than I can handle...the following is one of the best one I listened to while I was finding my way out of the tunnel...
because I knew I had to "HOLD ON"
Fighting multiple sclerosis is challenging, it is so unpredictable…it is as the top of my blog says, “Life is like a box a chocolate, you never know what the next day will bring”. I dealt with a lot in my life, but dealing with multiple sclerosis is overwhelming. The depression that I get behind the changes MS causes in my life takes my thoughts to the dark side of hopelessness and helplessness.
If you are a regular, a lurker, or you found your way here via Google. My hope from this blog post is if you live with someone who is depress or if you are depress seek help before it is to late. Remember the saying, “It’s a thin line between love and hate”, here is another one for you “It’s a thin line between life and death”.
The mind is a wondrous complicated part of our being and to ignore what is going on in our mind can be fatal. Thoughts can eventually turn into action if your thoughts that are not healthy are not tended to properly. The stigma society has about depression is the reason many people will not admit they get depress or refuse to seek help for depression.
Suicide is the 11th leading cause of death in America with 32,000 deaths each year. On average, one American takes his or her own life every 16 minutes. Tragically, approximately 15 percent of people living with depression end their lives by committing suicide. And for each suicide, there are an estimated 25-attempted suicides.
As overwhelming as these numbers may be, the true tragedy is the devastatingly painful emotional state-often caused by depression- that can lead a person to consider, and ultimately, attempt suicide. You may be able to help prevent the loss of life of someone you know or love by recognizing the warning signs.
Signs of Suicide
Most suicides are preventable. The main step in prevention is to recognize the many warning signs:
- Withdrawing and isolating oneself from family and peers
- Using alcohol and drugs
- Declining level of performance at work or school
- Increasing levels of irritability
- Expressing feeling of hopelessness and helplessness
- Giving away possessions
- Talking about suicide
- Sleeping pattern or eating habit changes
Suicide doesn’t have jus one victim. Typically, one suicide intimately affects at least six other people. The pain and suffering of suicide resonates deeply in the family and friends of the deceased. If you suspect that a friend or loved one is thinking about suicide, talk to him or her about the noticeable behavior changes and express your concern. Depression is a treatable condition that can be overcome.
Excerpted from an article by John McKinsey, M.D., copy write 1999 University of Florida Brain Institute.
Looking at the picture above is a face that lives with depression that knows first hand how quickly depression can drown your thoughts of feeling hopelessness and helplessness. I am not embarrassed to show my face because by seeing my face and reading what I wrote saves a life then it is worth revealing myself. Suicide is a permanent solution to a temporary problem no matter how dark the future appears living with multiple sclerosis or whatever appears dark in your life. We all have it within us to continue living the life we want regardless of the obstacles that awaits us.
Saturday, May 10, 2008
The STORM is here and I am being washed into the Depression Tunnel faster than I can swim out of it. I tried but I cannot get out of it by myself. I need help and I am going to get it before I fall deeper in the "D" tunnel. I will be back once I put my feet back on dryer ground because...
"I Know I Can Make It."
And..."I Am Next In Line For A Miracle"
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"I Know I Can Make It."
And..."I Am Next In Line For A Miracle"
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Friday, May 9, 2008
The following email was sent to me by a friend...
In October of 2001, my sister started getting very sick. She had stomach spasms and she was having a hard time getting around. Walking was a major chore. It took everything she had just to get out of bed; she was in so much pain.
By March 2002, she had undergone seve ral tissue and muscle biopsies and was on 24 various prescription medications. The doctors could not determine what was wrong with her. She was in so much pain, and so sick, she just knew she was dying. She put her house, bank accounts, life insurance, etc., in her oldest daughter's name, and made sure that her younger children were to be taken care of.
She also wanted her last hooray, so she planned a trip to Florida (basically in a wheelchair) for March 22nd.
On March 19, I called her to ask how her most recent tests went, and she said they didn't find anything on the test, but they believe she had MS.
I recalled an article a friend of mine e-mailed to me and I asked my sister if she drank diet soda? She told me that she did. As a matter of fact, she was getting ready to crack one open that moment.
I told her not to open it, and to stop drinking the diet soda!
I e-mailed her the article my friend, a lawyer, had sent.
My sister called me within 32 hours after our phone conversation and told me she had stopped drinking the diet soda AND she could walk! The muscle spasms went away. She said she didn't feel 100% but she sure felt a lot better. She told me she was going to her doctor with this article and would call me when she got home.
Well, she called me, and said her doctor was amazed! He is going to call all of his MS patients to find out if they consumed artificial sweeteners of any kind.
In a nutshell, she was being poisoned by the Aspartame in the diet soda...and literally dying a slow and miserable death.
When she got to Florida March 22, all she had to take was one pill, and that was a pill for the Aspartame poisoning! She is well on her way to a complete recovery. And she is walking! No wheelchair! This article saved her life.
If it says 'SUGAR FREE' on the l abel; DO NOT EVEN THINK ABOUT IT!
I have spent several days lecturing at the WORLD ENVIRONMENTAL CONFERENCE on 'ASPARTAME,' marketed as 'NutraSweet,' 'Equal,' and 'Spoonful.'
In the keynote address by the EPA, it was announced that in the United States in 2001 there is an epidemic of multiple sclerosis and systemic lupus. It was difficult to determine exactly what toxin was causing this to be rampant.
I stood up and said that I wa s there to lecture on exactly that subject.
I will explain why Aspartame is so dangerous: When the temperature of this sweetener exceeds 86 degrees F, the wood alcohol in ASPARTAME converts to formaldehyde and then to formic acid, which in turn causes metabolic acidosis. Formic acid is the poison found in the sting of fire ants. The methanol toxicity mimics, among other conditions, multiple sclerosis and systemic lupus. Many people were be being diagnosed in error. Although multiple sclerosis is not a death sentence, Methanol toxicity is!
Systemic lupus has become almost as rampant as multiple sclerosis, especially with Diet Coke and Diet Pepsi drinkers. The victim usually does not
know th at the Aspartame is the culprit. He or she continues its use; irritating the lupus to such a degree that it may become a life-threatening condition.
We have seen patients with systemic lupus become asymptotic, once taken off diet sodas.
In cases of those diagnosed with Multiple Sclerosis, most of the symptoms disappear. We've seen many cases where vision loss returned and hearing loss improved markedly.
This also applies to cases of trinities and firma.
During a lecture, I said, 'If you are using ASPARTAME (NutraSweet, Equal, Spoonful, etc) and you suffer from fibromyalgia symptoms, spasms, shooting, pains, numbness in your legs, cramps, vertigo, dizziness, headaches, tinnitus, joint pain, unexplainable depression, anxiety attacks, slurred speech, blurred vision, or memory loss you probably have ASPARTAME poisoning!'
People were jumping up during the lecture saying, 'I have some of these symptoms. Is it reversible?'
Yes! Yes! Yes! STOP drinking diet sodas and be alert for Aspartame on food labels! Many products are fortified with it! This is a serious problem.
Dr. Espart (one of my speakers) remarked that so many people seem to be symptomatic for MS and during his recent visit to a hospice, a nurse stated that six of her friends, who were heavy Diet Coke addicts, had all been diagnosed with MS. This is beyond coincidence!
Diet soda is NOT a diet product! It is a chemically altered, multiple SODIUM (salt) and ASPARTAME containing product that actually makes you crave carbohydrates. It is far more likely to make you GAIN weight!
These products also contain formaldehyde, which stores in the fat cells, particularly in the hips and thighs. Formaldehyde is an absolute toxin and is used primarily to preserve 'tissue specimens.' Many products we use every day contain this chemical but we SHOULD NOT store it IN our body!
Dr. H. J. Roberts stated in his lectures that once free of the 'diet products' and with no significant increase in exercise; his patients lost an average of 19 pounds over a trial period.
Aspartame is especially dangerous for diabetics.
We found that some physicians, who believed that they had a patient with retinopathy, in fact, had symptoms caused by Aspartame.
The Aspartame drives the blood sugar out of control. Thus diabetics may suffer acute memory loss due to the fact that aspartic acid and phenylalanine are NEUROTOXIC when taken without the other amino acids necessary for a good balance.
Treating diabetes is all about BALANCE. Especially with diabetics, the Aspartame passes the blood/brain barrier and it then deteriorates the neurons of the brain; causing various levels of brain damage, seizures, depression, manic depression, panic attacks, uncontrollable anger and rage.
Consumption of Aspartame causes these same symptoms in non-diabetics as well.
Documentation and observation also reveal that thousands of children diagnosed with ADD and ADHD have had complete turn arounds in their behavior when these chemicals have been removed from their diet. So called 'behavior modification prescription drugs' (Ritalin and others) are no longer needed. Truth be told, they were never NEEDED in the first place! Most of these children were being 'poisoned' on a daily basis with the very foods that were 'better for them than sugar.'
It is also suspected that the Aspartame in thousands of pallets of diet Coke and diet Pepsi consumed by men and women fighting in the Gulf War, may be partially to blame for the well-known Gulf War Syndrome.
Dr. Roberts warns that it can cause birth defects, i.e. mental retardation, if taken at the time of conception and during early pregnancy.
Children are especially at risk for neurological disorders and should NEVER be given artificial sweeteners. There are many different case histories to relate of children suffering grand mal seizures and other neurological disturbances talking about a plague of neurological diseases directly caused by the use of this deadly poison.'
Herein lies the problem:
There were Congressional Hearings when Aspartame was included 100 different products and strong objection was made co ncerning its use. Since this initial hearing, there have been two subsequent hearings, and still nothing has been done. The drug and chemical lobbies have very deep pockets.
Sadly, MONSANTO'S patent on Aspartame has EXPIRED!
There are now over 5,000 products on the market that contain this deadly chemical and there will be thousands more introduced. Everybody wants a 'piece of the Aspartame pie.' I assure you that MONSANTO, the creator of Aspartame, knows how deadly it is.
And isn't it ironic that MONSANTO funds, among others, the American Diabetes Association, the American Dietetic Association and the Conference of the American College of Physician s?
This has been recently exposed in the New York Times.
These [organizations] cannot criticize any additives or convey their link to MONSANTO because they take money from the food industry and are required to endorse their products.
Senator Howard Metzenbaum wrote and presented a bill that would require label warnings on products containing Aspartame, especially regarding pregnant women, children and infants. The bill would also institute independent studies on the known dangers and the problems existing in the general population regarding seizures, changes in brain chemistry, neurological changes and behavioral symptoms.
The bill was killed.
It is known that the powerful drug and chemical lobbies are responsible for this, letting loose the hounds of disease and death on an unsuspecting and uninformed public. Well, you're Informed now!
YOU HAVE A RIGHT TO KNOW!
I replied to my friend saying "Thanks for the email...it would have been GOOD NEWS if I was a person who consumed artificial sweeteners, but I am not. I do not like anything that is remotely DIET, you would never find me drinking a diet soda or eating anything with artificial sweetener. I tried artificial sweetener when it first hit the market and I DID NOT LIKE the TASTE."
However, I did find it interesting and GOOGLE Aspartame, here is one. If you comsume artificial sweeteners...this is probably something you want to investigate a little further.
Wednesday, May 7, 2008
It felt good to get out of my blog house and go visit others who live with multiple sclerosis. I had not visit as much lately because I was wrapped up in my own world. Getting out help me in the frame of mind I was drifting into and I want to THANK the people who blog about living with Multiple Sclerosis.
I start blogging about living with MS to help me with my cognitive mainly, talk about my experience living with MS, talk about my family, or whatever else is on my mind. My diary is read publicly and it will be around for eternity. Maybe one day what I talk about will be helpful to someone after reading what I post my blog or maybe not. My family read my blog, but they never leave a comment, they talk to me about something I had post privately. Sometimes it is better for me to talk on my blog than to talk to them. I sometimes feel like a burden and that is the last thing I want to be. It is hard being the strong person all your life to others. They do not have a clue how living with multiple sclerosis can break you down mentally, but I always have to show strength.
I do not know what I am going to do when/if the day comes when I have to be depended on someone; oops, I am getting off track…
Today, was not a good day for me mentally and instead of getting sh*t off my mind and hiding from the world, I left my blog house and went visiting some MS friends. I want them to know visiting with them today brought my smile back, a smile that has been slowly vanishing the last several days. I do no go to a support group, but today I realized MS Bloggers are my support group. THANK YOU!
My husband was not the only person in my family strongly against my decision to take Tysabri as my new treatment to slow the progression of multiple sclerosis, my entire family was against it. They should all be very happy campers when I tell them I will not be taking Tysabri. The decision to take Tysabri as my new treatment was taken away from me after my third doctor visit of the month of May.
Since I had taken methotrexate (chemo) as a treatment for my MS, my white blood cells have not returned to normal. Methotrexate also went toxic in my body after being on it for six months. At my doctor appointment Tuesday, I received the results of the Complete Blood Count; my CBC count revealed that my white blood cells are still low. They are higher than what they were when I was taken off methotrexate, but they are too low to take Tysabri. To the point, without adequate protection from these disease-fighting cells, viruses and bacteria suddenly become much more serious threats.
Although I have been feeling better since I had my last experience, that feeling is slowly disappearing. I am trying very hard not to get down about my present circumstances. The adversary is busy, I am feeling alone and I know I am not alone…I have to and I will fight what this is I am feeling right now…there is no need to worry TM… I will pull myself out of this rut soon.
Emotionally I have prepared myself to take Tysabri well aware of the possible danger. I am aware of the chemotherapy drugs that some MS’ers can take, but I been down that road and I cannot travel it again. I have to prepare myself mentally that I will be injecting myself with a needle again. I am experiencing an emotional rollercoaster that is leaning towards a tunnel of depression. I am not in that tunnel yet, but I feel myself drifting there…tick tock, tick tock, a tick a tick a tick a clock :(
I noticed a week ago when I was washing dishes that my right hand could not hold a grip...it came and went through out that day. I thought it was in my head and pushed it out of my mind. It was wishful thinking… the reality of my right hand loosing its gripping motion became a reality in the worse way.
I was curling my hair Monday night because I had an early morning doctor’s appointment. I was wearing one of my thin nightgowns with a plunging neckline and spaghetti straps. Yes, I believe in going to bed looking and feeling sexy. Looking and feeling sexy went out the window when I lost my grip on the curling irons, I could not move fast enough; the hot irons hit me on my chest near my right under arm.
I immediately felt the pain and burning, I did not see a mark by the time I went to bed so I thought I had escaped being burnt. It was a job to finish curling my hair, but to keep from being hit with the curling irons incase I lost my grip again, I put on a robe to cover my expose skin. I woke up the next morning and saw that I was SCARRED; I went to my scheduled doctor appointment. I had to reveal that I lost my gripping motion AGAIN and I showed her my scar, she revealed to me that my scar was a second-degree burn. I also got that pitiful look from her; I hate that look. To me that look is telling you sh*t is changing for you.
Sunday, May 4, 2008
My second appointment from my numerous appointments during the first week of May was to my neurologist. I went in to start the process to take Tysabri as my new treatment to slow the progression of multiple sclerosis. I must admit, I was becoming apprehensive again after reading the paper work I had to sign. I did not feel too comfortable knowing I had to enroll in a special program called the TOUCH Prescribing Program and the company will collect information about my health at regular periods.
I continued the process because at this point I did not care because all I cared about at the time was not being injected with a needle everyday. I knew the risk of taking Tysabri and I explained it to my husband. I thought he understood the risk I was taking when I told him I was going to choose Tysabri as my next treatment. He finally read the Tysabri Patient Medication Guide I brought home from my appointment early this morning and after reading the following:
> TYSABRI increases your chance of getting a rare brain infection that causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems.
> No one can predict who will get PML.
> There is no known treatment, prevention, or cure for PML.
> Your chance of getting PML may be higher if you are also being treated with other medicines that can weaken your immune system, including other MS treatments.
> Even if you use TYSABRI alone to treat your MS, it is not known if your chance of getting PML will be lower. It is also no known if treatment for a long period of time with TYSABRI can increase your chance of getting PML.
> TYSABRI is available only through a restricted distribution program called the TOUCH Prescribing Program. In order to receive TYSABRI, you must talk to your doctor and understand the benefits and risk of TYSABRI and agree to all of the instructions in the TOUCH Prescribing Program.
> If you take Tysabri, it is important that you call your doctor right away if you get any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, or strength or other problems) that have lasted over several days. Tell all of your doctors that you are getting treatment with Tysabri.
Also, see "What are the possible side effects with TYSABRI?" for other serious side effects with TYSABRI.
My husband immediate response was, "F@CK THAT! I am NOT with this...This should not be on the market from what I just read. You would be nothing but a guinea pig and I am not with this."
I replied, "I thought you understood me taking TYSABRI would be risky because I DID NOT want to inject myself anymore and TYSABRI was a once a month infusion."
Husband, "I am still not with this and you are not living alone with MS. I am living with it everyday too. I don't want you taking this, is there something else."
Me, "There are two other treatments I can take, but they are injections and I am shell shock over taking injections".
Husband, "Well...I told you how I feel."
I am not alone living with MS and I must consider how my husband feels about the treatments I take to slow the progression of MS. If I continue the process to take TYSABRI and go for my first infusion I would be putting unnecessary stress on my husband. I did put my fear away about TYSABRI, but TYSABRI is not worth taking if it will worry my husband the entire time I am on it. My love, respect, and devotion to my husband is more important to me than to take a treatment that is riskier than the other two treatments available. If I was able to get over the fear of PML, I can get over my fear of injecting myself again. I will be calling my neurologist Monday to stop the insurance process for TYSABRI and let her decide which injectable treatment she recommend I take between Betaseron and Rebif.
After writing this post saying, I will call my doctor Monday to stop the procedure for insurance approval. I decided not to do that because I have come to terms with finding out how Tysabri works for me. If I personally do not think, it is for me after four infusions I plan to discontinue Tysabri as my DMD. I respect my husband opinion, but every medication we put into our body have some sort of side effects. None of us knows what the future holds.
Thursday, May 1, 2008
I was fortunate to have been born with perfect straight teeth. Over the years, every Dentist I had always complimented me on my perfect teeth. Going to the Dentist office never intimidated me until 2002. Yes, you guessed it, I had not one but three cavities, I was so scared to get my cavity filled I must have cancelled my appointment ten times before I actually went in to have it fill. My Dentist had to prescribe me a couple of Valiums to take before my appointment. My first doctor appointment out of all the doctor appointments I have the next several days was the Dentist for a cleaning. About two weeks ago, I was on a milk duds binge and one day the soft chocolate caramel stuck onto the side of my upper back tooth. Pain start radiating from that tooth and I thought to myself, “$&*%, I must have a cavity”. I immediately had a post-traumatic stress moment back to 2002.
Like a little kid, I was wishing it away and I start eating on the other side of my mouth. Well, come to find out I DID NOT have a cavity. Because of AGE, my teeth are more sensitivity and in the tooth where I had the pain the root is expose. I asked, “What do you mean my root is exposed”. She gave me a name for, but my memory is not worth a dime if I do not write it down. She also said, “You know it comes with age”. Age is the excuse for a lot when your body changes, it was bad enough when Age cause my nice round butt to go south. Then caused me to go from wearing single lenses to a very low bifocal lenses. Well, the good news is I do not have a cavity, I can possibly correct my expose root, and sensitive teeth by changing my toothpaste brand.
My Dentist gave me a sample of Sensodyne and recommended I start using it over the brand I have been using for years.Sensodyne coax the minerals in your saliva to crystallize and cover the pores in your exposed roots so that cold stimuli cannot reach the tooth nerve. I should be complaining that I now have to pay $5.69 for a tube of Sensodyne, but t beats not having to have a cavity fill.
Overall the first of many doctors’ appointments went well :)