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by michelled from Palmetto

Last Post 93 days, 18 hours Ago


An Inspiration!
Aug 19, 2008 | 4:20 PM
Category: News
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Having recently been diagnosed with yet one more disease I sometimes become discouraged.  The latest diagnoses is Systemic Scleroderma, this is my 4th diagnoses.  I have turned to my cousin who has lived with ALS for the past 7 years and has been able to maintain an unbeatable attitude.  I am writing this because he has written his first novel and he is an inspiration to me.  He has only 10% use of his hands and arms, yet he found the strength and fortitude to write a book and have it published.  I am not writing this to sell the book but to tell his story.  When faced with adversity many of us want to blame someone and become self absorbed with self pity, like the world owes us something. With his attitude to tackle such a project he continues to inspire me and I wanted to share his story.

If you would like to view the book, it is called Living the Dream and can be found at the following address:      http://www.amazon.com/living-dream-historical-fiction-
novel/dp/1434896404/ref=sr_1_1ie=utf8&s=book&qid=121815
0429&sr=1.1   

 

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Member Comments Total Comments: 17
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WTVT_Boex read my blog view my photos
Aug 19, 2008 | 4:34 PM

Nice to see you back online, Michelle.
RandyLoo read my blog view my photos
Aug 19, 2008 | 5:25 PM

OMG, MIchelle, my mother had that. They treated her for arthritis, then they told her she had lupus ...then after about two years a doctor finally sent her to a specialist that ran the test and found out what it was. She was prone to it attacking her internal organs and could take the medication that helped the skin. For some reason back then 20 or so years ago they had a medication for the internal and one for the skin but she couldn't take the one that helped the internal. Right around the time they diagnosed scleroderma she found out she had breast cancer. She had a masectomy and continued on and beat that for 10 years before it recurred. Scleroderma is so rare that research is so limited. I have no idea after all these years why it is so difficult to diagnose. Good luck to you. I think the care and treatment lies with a good doctor that is an expert. I know that is what it took for my mom to finally get a handle on it. Thank you for sharing with us.
michelled read my blog view my photos
Aug 19, 2008 | 6:27 PM

Chris & Randyloo, thank you!

I was diagnosed with RA, then Lupus, MDS a form of bone marrow cancer and now Systemic Scleroderma. Isn't is so weird that it is that hard to determine? I can truthfully say I wish it was Leukemia, at least there is a state of the art facility in Tampa. My plan is to go to Shands. I am working on the details. Locally my doctors' having been doing the best they can but I feel a research hospital will be able to help, if not, learn more about this disease. The treatment right now is a form of chemotherapy to stop the disease. It has attacked my kidneys, lungs, heart and joints.

Randyloo, your mom must have been a brave woman. If they told me right now that I had breast cancer on top of this I'm not sure I could get a handle on it. Thank you for sharing!
Vittorio read my blog view my photos
Aug 19, 2008 | 6:49 PM

I'm glad the Docs finally got it right. The good news (for me) is that you're not feeling sorry for yourself. Well done! Now go do that voodoo that you do so well!
RandyLoo read my blog view my photos
Aug 19, 2008 | 7:01 PM

Oh, she was a spunky thing. Everything I know about it I learned from her and she was sort of private with everything. I remember she had a hard time with cold weather. At times her fingers would go completely white and sort of freeze up and she would drop anything she was holding. It is a rare disease and she had a wonderful doctor in KC that was an specialized in autoimmune deficient diseases. I would expect today the treatment to be way beyond what was available for her.
My sisters and I used to laugh because she said it was mostly Jewish women that had it and no one cared about jewish women. We would tell her she was making that up and it wasn't true. She would say, Oi vey why do I talk to you girls about nothin you learn nothing...just go to the doctor to make sure you don't catch this. We loved her more than she knew.
I will pray that you will be sent the right physician for your care and treatment.
michelled read my blog view my photos
Aug 19, 2008 | 7:57 PM

Thanks Vitt!

Randyloo, my hands turn white and then blue. I freeze below 80, I wear a sweater almost everywhere. I can not walk more than 10 steps without losing my breath. Did your mom have that problem too? My kidneys are at 35%. I refuse to become a victim of this but have accepted the fact that I must seek more help than I ever expected. Since my children are away at school it is easier. No mom wants to show weakness to their children, we want them to be happy and live their life. Thank you for your prayers, I think I am on the right track finally.
FloydFreak read my blog view my photos
Aug 19, 2008 | 8:33 PM

"...he is an inspiration to me."

And you, my dear, are an inspiration to US!
RandyLoo read my blog view my photos
Aug 19, 2008 | 9:06 PM

Yes, she had all those symptons. But she was lucky to get on the right medication. It was shortly after she found she had this that the breast tumor was discovered. She had to go through chemo with that. She hardly ever complained. I do remember that when it was first diagnosed her doctor gave her 2 medications. I sort of remember that a patient could take one or the other but not both of them. The one for the internal organs had an almost fatal reaction for her. They hurried up and got that out of her system and then tried the one that was for the skin. She could take that one. It is all about finding the specialist Michelle. That was the only thing that saved my mom at that time. I remember her coming home from the doctor one day and he gave up on her and told her that her pain was in her head. She was crying and told us that the doctor told her she was crazy. That is when she hooked up with a doctor that specialized in crippling arthritis and he looked at her and sent her to the last physician, who was a woman, she ordered the one and only test for scelorderma. That woman was a godsend. You sound like my mom. Your children would never see you as weak. Let them be your strength. Mom seemed to have it pretty much under control and then the cancer came back and it was untreatable.
I will say once again that the treatment and medications have to be more advanced now. How could they not be?
michelled read my blog view my photos
Aug 19, 2008 | 10:05 PM

Randyloo, little research and treatment exist for this disease. I do have a specialist for almost everything but there is no cure and the main objective is to stop the progression. That is the hope that they have given, just to stop it. I want more, I want to reverse it. I want my life back and people like your mother and my cousin that show strength will help me get there.
RandyLoo read my blog view my photos
Aug 19, 2008 | 10:49 PM

I know!
MoonOwl read my blog view my photos
Aug 20, 2008 | 8:43 AM

I'm glad the drs are on the right track MadamePresident. Thank goodness you have good health insurance!

Keep Strong!
MoonOwl
PastorD read my blog view my photos
Aug 20, 2008 | 1:03 PM

PTL! Finally a diagnosis... At least you know what your dealing with now. It's hard to fight the fight, when the enemy hides himself..........

Shands is a good place to go to and chemo is an aggressive method to stop the progression.

Your blogging community will stand with you, in your fight! We will not submit to a doom and gloom prognosis... A miracle, a cure or a state of the art treatment could be just around the corner!! Believing and praying for it to happen.
JANICELPED read my blog
Aug 23, 2008 | 11:57 AM

I hope you can contintue to KEEP YOU SPIRITS UP because it IS the only thing that will keep you going. I have had a rough road myself starting back in "95" with my first back surgery. From there it was the 4 miscarrages then it was the cyst they removed off my brain in January"98". From there it led to the hypothyrodism ,interstial cystitis, ulcerative colitis and I lived as a hermit for 4 years unable to leave my home because I could not be more than a few feet away from a bathroom. In 2004 my colon finally ruptured and I almost died. My kidneys had failed, my liver was damaged and most of my organs were damaged. They told my husband that if I made it thru the surgery I might not make it thru the night. You have to be stronger than your problems to over come them. I NEVER gave up fighting even when I heard the nurse tell one of the others nurses that the way I was breathing was the "death rattle". I could hear EVERYTHING but I could not open my eyes or move.I had to fight because of my son and my family. I hope you can find some comfort in knowing that you can overcome anything and everything you come thru can make you stronger. The inner strength you have is stronger than you think. Even now I am in need of more surgery but I am putting it off as long as I can because it will be number 9. Hang in there and I hope my story can help you to realize that you really aren't alone. My story might be different but we are both fighters. KEEP FIGHTING!!!! My prayers are with you always.
CrankyMan read my blog view my photos
Aug 23, 2008 | 6:28 PM

Michelle, I've been away from the blogs here for a bit, and my delight at seeing your return was certainly tempered by the news you shared with us.

What can I say, you know the diagnosis and that you're determined to fight. Hang in there!

We'll talk soon.
michelled read my blog view my photos
Aug 24, 2008 | 6:27 PM

MO, Janice and the Good Pastor, thank you for sharing and for your kind words!

Crankyman, I am fighting! I can not believe how much time has passed since we last talked. You should be on your way South soon, I would think. Maybe you should wait, the weather is perfect for me so you will not enjoy it here yet.

I see from your note that I misspelled DIAGNOSIS. Hey, I spelled sceroderma correctly.....I think. Good to hear from you!

Good to hear from all of you! Thank you!
CrankyMan read my blog view my photos
Aug 25, 2008 | 11:39 AM

Michelle, you didn't make an error on the spelling of diagnoses as that word is both:

1) the plural of diagnosis, and

2) the verb form as in "After the doctor diagnoses the patient, the records are sent...."

So for those keeping score at home, Michelle did spell it correctly.

Ding! (ringing correct answer bell)
michelled read my blog view my photos
Aug 25, 2008 | 6:27 PM

Ha! Thanks for keeping tabs on me! How has your summer been? Anything new and exciting?
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michelled

Having recently accepted the nomination of a fellow blogger to run for President I felt it was appropriate to update my profile. I have lived in Florida for a long time, but have lived in 13 States in total. I feel that having lived in a quarter of the states I am qualifed to be President. I do have a political affilialtion, however that is not important, I will do what is best. If you contribute to my campaign I promise to make promises that you want to hear!!!! If you don't vote for me, don't vote for anyone, no sense in wasting your time!

Member Since: 10/7/2006


 

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