The MonSter
Multiple Sclerosis is a disease which effects the central nervous system. The body's immune system begins to attack the covering of the nerves in the body and scars it. This covering is called myelin. Multiple Sclerosis means multiple scars. Due to the scarring there are short-circuits in the nerve transmissions. Many common complaints and symptoms of M.S. are; weakness, tingling, blurred vision, tremors, bowel and bladder problems, cognitive problems, speech disorders, pain and fatigue.
Multiple Sclerosis can be very difficult to diagnosis. I experienced my first episode in August, 1972. At that time my primary care physician thought I had the flu and that was the cause of my difficulty with balance, weakness and severe fatigue.I found it rather strange that no one else caught the flu from me....not my husband, young son, sister, brother-in-law or nephew who were all in contact with me. A few days after I became ill my husband had to go out of town for a week for a business trip. My son and I went to stay at my sister's house because I was too ill to take care of us.It was almost impossible for me to stand up. Having my sister take care of me was of great concern because she was pregnant at the time and I was afraid that she would catch the flu. However, as I said before, no one else became ill.
Several years passed before I had my next episode. I thought nothing of it. Having experienced the severe vertigo, weakness, fatigue and blurred vision in the past simply made me assume that I had caught a "bug" again andI simply needed to give my body time to recover.
It wasn't until 1988 that I began to question what was wrong with me.Over the years I had experienced these episodes several times.I began to question if it was really the flu. By this time we had moved from Michigan....where I had experienced my first episode....to Illinois and on to California. My primary
care physician referred me to a neurologist. After the initial consultation my neurologist decided to perform a brain stem study. She found a vestibular disorder and referred me to an Ear, Nose and Throat specialist. The ENT examined me and ran several tests. While he agreed that I had a vestibular disorder he was convinced that I had multiple sclerosis.That was the beginning of a very long and difficult voyage toward discovery.
My neurologist ran all of the tests over the years; MRIs, EEGs, EMG, Evoked Response Tests and finally a spinal tap. All of my symptoms pointed to Remitting and Relapsing Multiple Sclerosis.......but, we were unable to get a definitive answer from the tests. The results were simply too vague. However, my neurologist felt certain that I did indeed have M.S.
Through the years I continued to experience severe vertigo, weakness, fatigue, pain, blurred vision, difficulty hearing, frequently falling,and cognitive problems....difficulty understanding what was being said to me or difficulty remembering words. There were times when I simply could not carry on a conversation. Other times I found I could no longer add or subtract or remember alphabetical order....which meant that I could no longer teach. This was devastating to me. As I stated my neurologist felt I had m.s. but, could not prove it. I was tired of taking the same tests over and over again. The problem is that in most cases of remitting and relapsing m.s. a diagnosis can only be made during a flare-up.....or exacerbation of symptoms. Approximately 5% of m.s. patients never receive a definitive diagnosis.
Finally, I was diagnosed with Remitting and Relapsing Multiple Sclerosis. Apparently the recurring episodes of shingles caused a relapse of my m.s. This, in turn, caused another shingles episode. It had turned into a vicious cycle and I was worn out. Both shingles and multiple sclerosis are problems of the immune system and my immune system was wearing out.
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For more information on Mulitple Sclerosis please visit the folowing sites:
The National Multiple Sclerosis Society
All About Multiple Sclerosis
Multiple Sclerosis Information Gateway
Mayo Clinic Multiple Sclerosis
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UPDATE: December, 2002..... The most difficult part of designing a website for me has been due to having multiple sclerosis. I'm never really sure when I type a page if my spelling is correct, if I have typed the correct word, or if a sentence even makes sense. There have been many times when I have reread a page several days later only to find that I have written "thee" instead of "the" or that the sentence sounds like jibberish.
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UPDATE: December 12, 2002..... I have had shingles 4 times in the past 5 1/2 months. My immune system has been unable to handle it and I have had a flare-up, or exacerbation, of my M.S. for several months. My neurologist is considering massive doses of intravenous cortisone to try and knock me back into remission. Although I never really go into full remission I usually do considerably better than I have been. The problem with taking cortisone is that it may shut down my only adrenal gland......which would cause Addison's Disease. The adrenal glands are responsible for producing natural cortisone which the body must have to survive. I have only one adrenal because the other was removed due to a tumor 15 years ago. The neurologist told
me I have a very weak immune system.
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UPDATE: January 2, 2003 I decided to undergo the treatment. I received 1000mg of solumedrol intravenously for five days. A nurse came to my home and administered the IV...it took approximately an hour a day. After the five days of IV I was place on oral prednisone for twelve days. It was a slowly decreasing dosage of prednisone daily to help my body adjust to no longer receiving the massive doses of steroids. I seem to be doing better. It is still too soon to know if I will go into full remission but, I am doing better than I have in years. Unfortunately, I have shingels again. We knew that it was a possibility because of the treatment but I was willing to
take the chance. This is probably the worst case of shingles I have ever had. But, I know it will pass and I'm thrilled that I underwent the treatment.
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UPDATE: March 21, 2003 It has been a long slow road to recovery. The treatment I underwent in December was well worth doing.
Although I have not gone into full remission I am feeling better than I did months ago. My doctor and I are currently discussing daily injections to keep my M.S. under control. As with all medications there are side effects. I'm not sure that I'm ready for any new medications. She has adviced me to not overdo and try to pace myself. I'm doing my best but, it's so hard to know when I've overdone it until I feel the pain...LOL
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UPDATE: April 17, 2003 I'm not making as much progress as I had hoped to. Although I knew that if I did not go into full remission my recovery period would take longer. However, it has been several months since I underwent the solumedrol treatment and I am still not as strong as I was a year ago......and even at that time I was having symptoms regularly. But, the solumedrol did help and I will simply have to be patient and slowly increase my periods of exercise, listen to my body,and hopefully not become
seriously ill again. I have decided not to take the interferon injections. There are simply too many side effects and I really think I'm better off at this point in my life to just do the best I can without additional medication which might actually make me feel worse. One of the most common side effects of interferon is flu-like symptoms. As well as bruising and swelling at the injection site. Because of my recurring shingles I am only eligible to take the daily injections. I truly feel that the side-effects outweigh any benefit I may receive.
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UPDATE: August 7, 2003 I have had a severe shingles episode which has triggered my m.s. problems. My doctor prescribed a low dose of Ambien to help me sleep. I haven't slept well in months and it is causing my m.s. symptoms to worsen.
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UPDATE: September 23, 2003 Allergy season has begun early this year. My allergic reaction to things in the environment has been severe. My neurologist has sent me to bed and insisted that I have no contact with others. Her concern is that if I catch a cold, the flu, or begin to run a fever due to a bacterial infection caused by my allergic reaction to my environment I will need to undergo treatment again. Once my allergies are under control I will begin a new medication. It is called Provigil and it will help me remain more alert during the day. This may improve my quality of life.
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UPDATE: October 12, 2003 I had a severe reaction to Ambien. Ambien normally does not cause side effects. I have stopped the Ambien and have decided not to try the Provigil or any other type of medication which is not absolutely necessary. I simply cannot take a chance on having any type of adverse reaction to medication. It makes my body weaker and could cause an exacerbation.
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UPDATE: January 15, 2004 At the end of last year I had another severe exacerbation. My neurologist prescribed the solumedrol IV infusion again. There was more nerve damage this time from the exacerbation and I will now need to use a wheelchair. My neurologist has prescribed a custom made one that will meet my needs. As of yet we have no idea if my insurance will pay for it but since I have no other choice if they do not pay for it we will. My arms and hands are still very weak. I will begin physical therapy soon. I was having a great deal of trouble swallowing food at first and everything had to be liquified. Eventually I was able to eat pureed food. I am now able to eat soft food but must be very careful to chew well and only eat small amounts at a time or I begin to choke. I am finally able to feed myself without help....although I cannot cut up my food....someone must do it for me. I'm still very weak and I will give more details when I am able to.
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UPDATE: January 28, 2004 I'm in my second week of physical and occupational therapy and I'm doing amazingly well. My husband and I think we know what is triggering my severe exacerbations......a low grade infection. At the end of 2002 when I began the solumedrol infusions my neurologist wanted several lab tests done. These tests were done before the infusions. The results of the tests were inconclusive.....they didn't know if I had an infection or not. Since I am allergic to so many antibiotics we decided against using them. One month later...after the treatments were concluded and I still felt very weak......I did indeed have an infection and once I began the antibiotics I felt much better and my body suddenly felt stronger.
Well, it appears to have happened again this time. In October of 2003 I still wasn't feeling well due to my hay fever. I just ignored it and took my allergy medication. When I became ill during Thanksgiving and had to undergo the solumedrol treatment once again my allergies were still bothering me. Then during the middle of January, 2004 I saw my primary care physician because I thought I might have bronchitis. During the first two weeks of January I had a cold as well as a mild shingles episode. My PCP wasn't sure if I had bronchitis or not but because I was having difficulty breathing we decided not to take the chance on letting a low grade infection go untreated. Four days after beginning the antibiotics I felt so much better. A few days later I began physical and occupational therapy. I went from not being able to move my hands or take a step to walking with help and being able to write my name.
I still have a long way to go and I don't know if I will ever be able to walk without assistance but the hope is there. I'm growing stronger each day. I know that I will always need to use a wheelchair for those times when we are out all day but perhaps in time I will be able to use my rollator again. The occupational therapist is working on strengthening my hands and arms. This will help me use my wheelchair more effectivley as well as help with my rollator. But, more importantly to me it means that I will be able to eventually use my computer whenever I want to. Perhaps one day I will be able to paint again.
I see my neurologist next week and plan to discuss our "theory" of what is causing my severe exacerbations. Perhaps we can avoid them if I take antibiotics when I first become ill in the fall. Or, before I begin the solumedrol treatment perhaps we can try an antibiotic to see if that helps control the exacerbation and decrease my symptoms. I'll have to wait until next week to talk to my neurologist about it.
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UPDATE: March 17, 2004 I saw my neurologist yesterday. Although I am making progress it has been a very difficult two weeks. I have had a mild exacerbation caused by trying to walk on an ramp, both my eyes were infected and I am using antibiotic eyedrops and I have had to undergo an endometrial biopsy. The solumedrol infusion has apparently caused a hormonal imbalance. If we are correct and I am not either pre-cancerous or in a stage of uterine cancer I am experiencing a hormonal imbalance.....we are waiting for the test results. My gynecologist and I are discussing my options. I can either increase my HRTs...hormone replacement therapy......or undergo a hysteroscopic endometrial ablation. As always there are pros and cons to each of these procedures. I plan to speak to my hemotologist for advice because either of these treatments may have an undesirable effect on my bleeding disorder. Prior to the endometrial biopsy I had several blood tests to check my kidneys before taking medication to help my blood clot. I am beginning to experience hot flashes even with my HRTs.....so I am seriously considering an increase in HRT medication if my hemotologist feels it is safe. The hot flashes are making my m.s. symptoms slightly worse. A hysteroscopic endometrial ablation would stop the bleeding I am experiencing but would not help with the hot flashes.
Both my primary care physician and my neurologist feel I should always have antibiotics on hand in case I feel that I have a low grade infection. They both agree that it is very possible that both of my severe exacerbations were caused by a low grade infection that went undetected for several months. My immune system is very weak and seasonal allergies appear to be the culprit......but, it is possible that I may catch a "bug" at other times of the year. So, just to be on the safe side, I will always have antibiotics on hand in case I feel ill and do not recover within a few days to a week. My doctors and I have agreed that taking antibiotics on the chance that I have a low grade infection is far better than having another severe exacerbation.
The exam with my neurologist went very well. She is amazed at how much stronger I have become in just the past six weeks since I last saw her. All the time I spent in physical and occupational therapy has really made a vast improvement. I am now able to walk slowly for twenty minutes using my rollator...but only a flat surface. My hands are so much stronger and I can do so many things for myself now than I could just two months ago. Around the house I am completely independent. When we go somewhere I do rely on David or a friend for some assistance but for the most part I am able to manage on my own if I am using my rollator. If I am in my wheelchair I must rely on someone's help because I cannot maneuver it very well by myself. But, there is hope that one day the wheelchair will be placed in the closet and I will be able to walk solely with the use of my rollator and that I shall once again be able to drive. However, my neurologist has told me that any time we go on vacation or we are gone all day for a special event I will need the wheelchair. It simply is not worth experienceing even a mild exacerbation because I have been too stubborn to rely on my wheelchair and the help of my husband or a friend.
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UPDATE: March 29, 2004 Apparently I was too optimistic as were my doctors. I have had several mild exacerbations in the past 12 days. I'm very weak. My arms and hands are hardly able to move. Although I can still take care of my "personal" needs on my own I am back to square one. I must depend on my husband for almost everything. All the time spent in physical and occupational therapy have flown out the window. I must start all over again. I will probably be able to reach that same plateau in time but it is doubtful that I will ever be able to be truly independent again.
I am trying to deal with this setback as best as I can. I wake up each morning and try to find something to be happy about. Today I sat outside for 10 minutes and enjoyed the fresh air.
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UPDATE: June 7, 2004 It's been a very difficult few months. I've gone from one doctor to another and undergone far too many tests. Today I saw an endocrinologist. He's out of network so our insurance will not pay for the visits to him but he's my only hope. I'm having a complete endo work up done. We need to know if I'm not making progress because the m.s. is worsening or if there is something else happening in my body that is preventing me from going into even a partial remission. We know I have a hormone imbalance caused by the solumedrol infusions last December. Now it's time to learn if there is more than just an estrogen imbalance. I'm more hopeful now than I have been in a long time. The endocrinologist is very knowledgable. I'm so lucky to have a neurologist, hemotologist and endocrinologist who are caring, knowledgable and do not see me as just another patient who has a medical problem that is their specialty. They see me as a person with several medical problems and will work with each other to help me.
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UPDATE: July 22, 2004 The new medication the endocrinologist has placed me on seems to be helping. My neurologist also had very good news for me. She expects a new medication to be available for m.s. by the end of the year.....perhaps as early as October. It isn't a cure for multiple sclerosis but it's the most promising medication to date. It's called antegren and it's a once a month infusion.
Unfortunately, I've had my third upper respiratory infection so far this year. I've been on antibiotics and although they do help I'm concerned because I usually do not have upper respiratory infections during the spring and summer months. If antegren becomes available in the early fall I may be able to avoid having another respiratory infection and also avoid a severe exacerbation. It has been a long time but I feel very hopeful. Antegren has been in trial studies sinces 2001.
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UPDATE: September 9, 2004 I've seen an Ear, Nose and Throat specialist who is treating me for the sinus infection. I've been on a new dose of antibiotics for the past two weeks as well as a decongestant and a new nasal spray. I'm to continue with the decongestant for another two weeks and the nasal spray until I see the doctor again the first week in October. Today was my last day of antibiotics. I'm not sure if the infection is gone or not. I should know in the next few days. If I think I still have an infection I will call the ENT and ask him to see me sooner than October.
I saw my neurologist last week and she is happy with the progress I am making. My arms and legs are getting stronger...but, it's a very slow, painful and tedious process. However, I am continuing with the exercises I learned in physical and occupational therapy. I do feel that I am stronger but still very weak. I had hoped that all of the exercises would help me regain sooner some of the things I have not been able to do since my last exacerbation. However, it's wonderful to be able to take care of my own personal needs without any help. I am able to feed myself without difficulty but I still have some problems using a knife to cut some foods. I'm not choking on food or water as often as I had been in the past.
The FDA is planning to approve antegren in November. It will probably not be available for release to m.s. patients until the early part of 2005. My next appointment with my neurologist is in December, 2004 but she has reassured me that if she hears anything sooner about antegren she will call me.
At this time we do not know if the insurance companies will pay for antegren. There are so many questions about who will administer antegren, where it will be given, how much it will cost, etc. I'm trying to focus on my exercises and keeping this sinus infection under control if I can't get rid of it. I'm determined that I will be as strong and healthy as possible for all of the new medications and treatments for m.s. that are now being researched and may soon be available....this includes antegren. I'm convinced there will be not only a better way of treating m.s. within the next 10 years but possibly a cure.
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UPDATE: January 6, 2005 The FDA has approved antegren. It is now called Tysabri. I have filled out all of the necessary papers to see if I am a possible candidate for trying it. There are several steps to go through to be certain that I'm not allergic to any of the components in Tysabri and that my other medical conditions would prohibit my taking it. I'm waiting to hear from my insurance company as well as my Biogen Case Worker. My neurologist hopes I will be able to receive my first infusion some time this month.
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UPDATE: March 3, 2005 It was announced on Monday, February 28, 2005 that Tysabri would be taken off the market. Two patients who were in the trial studies have developed PML. PML is a neurological disorder which is often fatal. It strikes people with suppressed immune systems. One of the patients has died.
PML has many of the same symptoms as M.S. At this time it is unknown if the patients were misdiagnosed and never had M.S. or if the combination of Tysabri and Avonex.......one of the beta interferons for M.S...........caused the PML. It is also possible that Tysabri alone supressed their immune systems. Tysabri has been in trial studies for at least 3 years and been available for many other patients for the last few months. Of the 8,000 patients who have taken Tysabri alone or with one of the beta interferons only these 2 patients have developed PML. Biogen is researching whether other patients are in the early stages of PML.
I had hoped to begin my Tysabri infusions this month. Now, we will all wait and see what Biogen and the FDA learn about these patients and whether Tysabri will once again become available for us. Tysabri has been the most promising drug for the treatment of relapsing and remitting M.S. I had hoped that it would prevent development of secondary progressive M.S.
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UPDATE: May22, 2005 I have an appointment with my neurologist next week. There has been a great deal of discussion concerning releasing Tysabri within the next 5 or 6 months but with very stringent restrictions.
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UPDATE: August 13, 2005 I've been using the computer to play games and improve my cognitive skills as well as my eye-hand co-ordination. There seems to be some improvement. Even if it's only imaginary I'm enjoying myself and that's important.
I've also been listening to audio books a great deal. Each day when I rest I listen to part of a book. I'm now "reading" a book a week and it's thrilling to be able to do something I once loved but thought I wouldn't be able to do again. My vision problems have prevented me from reading even large print for long periods of time. Audio books have opened my world again. I'm considering joining a book club which meets once a month.
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UPDATE: October 14, 2005 I seem to be "stabilized" but I don't think there will be any further improvements in my condition without some type of medication. The ABCRs.....the beta interferons for multiple sclerosis....are still not an option for me. The rumors of Tysabri being released again seem to be just that...rumors and nothing more. I've been reading of MSers who take chemo in a very small dose for 6 months. Some have felt that it has helped others have seen no difference in their condition. I have only read about two chemo medications used for m.s. and they are Cytoxan and Mitroxantrone. Both are administered intravenously. I will see my neurologist in two weeks and discuss this with her. If she considers it a viable treatment for me I will need more information before making my decision.
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UPDATE: February 20, 2006 The FDA will be meeting next month to decide whether or not to release Tysabri. Patients who were in the clinical trials are once again receiving it but only as a monotherapy. I've written to the FDA as well as my congressmen urging them to release Tysabri and allow those of us living with M.S. to decide for ourselves whether or not we wish to receive the every 28 days infusion. Most medications have side effects and many can be fatal...I would prefer to decide for myself what is in my best interests.
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UPDATE: May 8, 2006 The FDA met in March and decided to wait unitl sometime in June of this year before making a final decision on Tysabri. An independent advisory committee recommended that the FDA approve Tysabri immediately but the FDA chose not to do so. Once again I'm in limbo along with all of the other MSers who wish to try Tysabri as a treatment for m.s.
I've had an infection for the past 9 months which has been controlled by antibiotics but has not been wiped out by them. Therefore, I have had several mild exacerbations over the past few months. I am thankful that the antibiotics have prevented a major exacerbation but I really would like to have more quality of life. When I'm not resting on the couch I am at my computer attempting to learn digital scrapbooking. I have found that it is a wonderful way to exercise my hands and do something with all of the pictures we take of our grandchildren.
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UPDATE: November 19, 2006 I've been on antibiotics now for several months due to another upper respiratory infection. My nuerologist and I decided to wait before I begin the Tysabri infusions. I shall probably begin taking them in the Spring of 2007....or sooner if the infection goes away. This is a very exciting time for me.
As with other treatments I have heard of people having a negative reaction to Tysabri. I think this is to be expected. But, I have also heard of those who have experienced wonderful results while on Tysabri. I'm willing to take my chances. This is a personal decision that one must make with one's doctor. My husband is not happy with my decision but he does understand why I have made it. He is afraid that I will be one of those individuals who react negatively to Tysabri and he is very much afraid that it may cause a severe exacerbation or possibly PML. But, this is something I must try!!!!!!!!
I've heard of a new procedure for people with chronic sinus infections. It's called sinuplasty. At this time it isn't available where I live. There are approximately 150 doctors certified to do the procedure in the United States. I'm hopeful that there will be an Ear, Nose and Throat specialist in Nevada who will become certified within the next year. It would be wonderful to not worry about the chronic sinus infections which lead to bronchial infections.
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UPDATE: March 21, 2007 There is finally an Ear, Nose and Throat specialist in my area who performs sinuplasty. Unfortunately, I am not a candidate for the procedure. I underwent a CT scan and all of my sinus cavities are infected. Sinuplasty only works on 6 of the 8 sinus cavities. I'm very disappointed.
My sinus infection has lasted for 7 months now. Due to the infection I have not been able to begin the Tysabri infusions. I have an appointment in a few weeks with my ENT to discuss my options.
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UPDATE: June 26, 2007 I heard finally learned today that both my insurance company and Biogen have approved me for the Tysabri infusions. I'm excited and nervous at the same time. Now, I must wait for the infusion center to schedule my first infusion. I hope it's soon. I'm finally free of the infection and I would like to begin before I get another one....LOL Please keep your fingers crossed and wish me luck.
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UPDATE: October 13, 2007 I had my first infusion on July 6, 2007. It's been an amazing journey since then. I'm no longer in a wheelchair. I'm walking!!!!!!!!!!!!!!!!!!!!!! I have had appointments with both my primary care physician and my neurologist in the past two weeks. The consensus is that I need to slowly increase my endurance. Exercising while sitting down is very different from exercising standing up....LOL So, I must pace myself and increase my endurance. With m.s. the axiom no pain no gain does not apply. If I find that I'm becoming too fatigued or something becomes too painful I stop and rest. After several years in a wheelchair I can't expect to simply stand up and do everything I want to do without having to work for it.....and that means lots of exercise. It will probably be at least 6 months if not longer before I will be able to be as fit as I would like to be. That's to be expected. But, this is my miracle :) I was actually able to take my dogs for a walk. That's something I haven't done in years.
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UPDATE: January 14, 2008 The infusions are going very well. Although this is a treatment and not a cure for multiple sclerosis I'm thrilled with the progress I have made. I will not need to see my neurologist for 6 months. This will be the first time in 20 years that I have not seen a neurologist every 2-3 months. And, I've only had one sinus infection and that cleared up with 10 days of antibiotics. I had no idea life could be so good again :)
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UPDATE: May 16, 2008The infusions are going very well. I can't believe how well I am doing. I know that there has been so much damage to my central nervous system that unless there is a cure I will never be able to do all of the things I once did....but, I'm able to do so much more :) I can now walk for 1 mile on my treadmill. A year ago I was in a wheelchair!!!!!!!!!!!!
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UPDATE: October 13, 2008 I'm amazed at how well things are going. The only problem is that some days my veins c-operate and some days they don't. There has been scar build up and the IV needle doesn't always thread easily. One day I may need to have a port-a-cath inserted. But, I'll make that decision when it is necessary. For right now I'll take my chances and have the nurse attempt to insert the needle for my infusions as many times as is necessary.
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I have a companion Who's almost always at my side He very rarely leaves me Even though I try to hide He'll play these silly games with me My choices are so few As he stabs me, burns me, cuts me to the bone And just when I think I've outwitted him I find I'm no longer alone He stands there laughing while I cry To him it's just another game There is no reason why I have a companion That simply will not wain I cannot run from him My companion is called pain � shaynamaydle chosen featured poem and poet of the week February 12,2000 at Amber's Words Pages |
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As my life slowly drifts away I realize my time here was borrowed...I was not meant to stay The pain is too much for me to bear Please believe me...it isn't that I do not care But if I have no quality of life And each new day brings only strife When Ha'Shem calls me I shall take His hand And follow Him to the Promised Land I shall miss each of you I know But when my time comes I shall gladly go Please do not feel overwhelmed by grief My time on earth was not that brief I have been protected by your love If possible I shall watch over you from above I beg of you do not cry I'll live in your memories...I will not die Your Guardian Angel I shall be When Ha'Shem takes me home and sets me free � shaynamaydle |
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The Living With Multiple Sclerosis SiteRing This site owned by shayna |
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INTRODUCTION