PLEASE TELL YOUR STORY!!

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11 thoughts on “PLEASE TELL YOUR STORY!!

  1. WOW ANNEMARIE WHEN I WAS 14 YEARS OLD I WENT TO DR DUE TO VISION AND HEAD JUST SPINNING AND AND ABLE TO WALK TALK . DR’S AND FAMILY THOUGHT I HAD BUMPED MY HEAD SOME WHERE PRETTY HARD. NO MRI’S BACK THEN IN 1979.I WAS IN HOSPITAL FOR 16 DAYS AND ALL THEY KNEW WAS SOMETHING IN MY BRIAN!.SO FOR LAST 27 YEARS I ALWAYS HAD PAIN AND BRIAN FOG BUT DID NOT KNOW WHAT THAT WAS. AT WORK MY FRIENDS AND EMPLOYEES WOULD ASK ME IF I WAS DRUNK ? NOW WHEN I WAS WAS DRUNK NO ONE ASKED LOL. LONG STORY LONG 3 YEARS AGO ALL THE SAME FEELING I FELT 27 YEARS AGO CAME BACK VERY HARD AND I HAD A STROKE WHILE IN HOSPITAL I WAS TOLD ABOUT M.S

  2. I was diagnosed 2 yrs ago with MS. Here is my story:
    I work in a office setting and for long time whenever I walked a great distance my legs felt like I just ran a marathon, or from my waist down I couldn’t feel my legs. I went like this for almost 6 months before I said anything because I didn’t know what my doctor would think. I confided in a good friend and with her help I went to my doctor after month of testing including a blood test I was told I had MS. It was the most worse news I could’ve recieved. I at first ignore my doctor thought he was nuts, I went for a second opinion and was told the same. I had a real hard time with the diagnoses of the MS, but after I started researching and talking and finding blogs like this one. I realized I wasn’t alone in my battle, and together each of us with our voices can have power over this diease. I won’t stop fighting and I won’t stop talking. Thanks Annemarie together with our voices we can make change happen.

  3. Good evening everyone my name is David (cfkid) .. I am writing you today about the story of my life its very sad so please beware. I am 37 years young I have cystic fibrosis and other major medical issues about now I think that I have about 13 in all major medical issues. my life has been very rough I have lived most of my life in and out of the hospital and have been to many Dr s all over the USA I am in so much need of help these days not knowing were to turn I have been to churches, foundations , the county as well and no help has been offered we need so much help with the power gas water bills and no were to go in my family we have many that have Cystic fibrosis as well as other major medical issues and in my home we are all with some type of medical issues it seems to me that when I was a child life was much easy I did not have to ask for help it was already taken care of now day s everyone is looking for a cure for Cystic fibrosis but they forget about what these patients need on a daily basis I know this is no ones fault but this is just how it is my money goes to car payments, rent , phone , high cal diet , and other medical needs as well including gas that it takes to drive 5 hr to my cystic fibrosis center in WI so its lots to keep my house going its sad that companies see the money that is coming in but do not understand about the money that is going out no matter how much I try I get pushed back more and more.. I have been sick my whole life I did get to go to collage as a nursing asst and home health aide but can not work full time because ill lose my ssi this is just a shame they are not understanding what it takes these days to fight sickness I have been a very big help to the area were I live by running the watch program as well as adopting many bus shelters and a highway all volunteer work that I have been doing for many years many hr s of treatment many hr s of meds but I do this all to be able to help others any one fighting cystic fibrosis is in my mind is my brother or my sister and we all have to stick together to win this medical issue we have also been trying to get a national law passed named Davids law for kids with cystic fibrosis in public schools all over the USA parents are having to stop working to be able to take care of there cf child is this fair no now we ask are selves why well the reason is because there is no school nurses on full time any more they have been cut to due major budget issues as well please take time to sigh in support of this law at http://www.petition2congress.com/2418 as well as pray for my family if you have any way to help us please let me know as soon as possible at 612-282-1211 or cfkid@usiwrieless.com I think everyone in advance for your prayers and may god be with you all and soon I hope that CF will stand for cure found not cystic fibrosis take care all

    David
    ( cfkid)

      • I will persist until I succeed.
        In the Orient young bulls are tested for the fight arena in a certain manner. Each is
        brought to the ring and allowed to attack a picador who pricks them with a lance. The
        bravery of each bull is then rated with care according to the number of times he
        demonstrates his willingness to charge in spite of the sting of the blade. Henceforth
        will I recognize that each day I am tested by life in like manner. If I persist, if I
        continue to try, if I continue to charge forward, I will succeed.
        I will persist until I succeed.
        I was not delivered unto this world in defeat, nor does failure course in my veins. I
        am not a sheep waiting to be prodded by my shepherd. I am a lion and I refuse to
        talk, to walk, to sleep with the sheep. I will hear not those who weep and complain,
        for their disease is contagious. Let them join the sheep. The slaughterhouse of failure
        is not my destiny.
        I will persist until I succeed.
        The prizes of life are at the end of each journey, not near the beginning; and it is not
        given to me to know how many steps are necessary in order to reach my goal. Failure
        I may still encounter at the thousandth step, yet success hides behind the next bend in
        the road. Never will I know how close it lies unless I turn the corner.
        Always will I take another step. If that is of no avail I will take another, and yet
        another. In truth, one step at a time is not too difficult.

  4. Submitted on 2012/10/02 at 12:39 am

    My name is Linda and I live in Harrisburg, PA and am age 50. In 1965, at age 3 I was diagnosed with Wilms Tumor and had a cancerous tumor removed as big as a softball. I suffered chemo, cobalt and excessive radiation. Vincristine was used. I had my kidney removed in Harrisburg, PA by Dr. France and went for radiation treatments at Children’s Hospital in Philadelphia for one year.

    After all that was settled as I young child, I felt great. It was not until the late 80’s that I suffered 2 miscarriages and 2 ectopic pregnancies of which I was told it was probably due to the radiation suffered as a young child.

    In 1999, I thought I had a goiter, but upon removal in May, the doctor called me one week later to say the biopsy showed cancer. Hence, my right thyroid had to be removed and a 2nd surgery was done in June. After the 2nd neck surgery after taking blood, they told me that I had too much calcium in my blood stream, of which a parathyroid had grown to the size of an almond. I had to wait one month after my 2nd surgery and find another surgeon to take that case to remove my parathyroid. It is currently held for me should I ever need it at Harrisburg Hospital in PA. I was told this was all caused by radiation as a young child.

    In 2008 of June and July, I had 2 acute cases of pericarditis. The July episode kept me in the hospital for 17 days and NO ONE could tell me what was wrong. They figured it was viral; the hospital had to do two lung taps and then sent me home on steroids. I felt like a monster on that drug. Ever since 2008, I never felt the same again.

    In December of 2010, I was deeply out of breath, I was told to get a sleep apnea test, I went for the test, did not have sleep apnea, but was given a heart catherization which showed primary pulmonary hypertension at a moderate level and sent home on Revatio. I stayed on the expensive drug and after two months had NO change, so I took my medical fight in my and the option to find another doctor for a second opinion. I went to see Dr. Baba Limann who in April of last year, did a heart catherization and basically told me that because I weighed 254 lbs, he felt the results of the heart catherization showed only mild PPH and he felt my issues were weight related. I left his office with hurt feelings and deep inside felt he was wrong. He offered up for me to go get approved for Lap band surgery or Gastric bypass and one day I woke up and said to myself after being approved for the surgery, Linda, you can do this on your own, and one May 15th, 2011 weighing in at Weight Watchers at 254, as of June 13th, 2012 I weighed 174.

    After losing so much weight, I went to my primary family doctor in March of 2011 and requested in Echo. They told me the echo was normal compared to last year, but I requested a copy of it. On the interpretation it spoke of heavily calcified mitral valve and mitral regurgitation. I just felt inside something was not right. I took my own medical issues into my own hands and sought out help from Associated Cardiologist. I saw Dr. Nitin Jaluria, took him all my past records and basically cried in his office and said to him he was my last hope. With limited hope, he felt my issues needed me to upper my current dose on the water pill Lasix that I have been on since 2008. I told him I have been on Lasix since 2008 and anymore will overtime kill the only kidney I have left, but he also felt the radiation I suffered as a young child might be my cause, but I told him, NO, I think I have constrictive pericarditis as I have done much of my own reading on Google and I feel that’s what I have and I want my pericardial sack removed. Dr. Jaluria I think felt sorry for me and referred me to Chief Surgeon of Pinnacle Health in Harrisburg, Dr. Mumtaz, who took over my case. Dr. Mumtaz, ordered a CT scan, a heart catherization and an MRI. My saving grace was the MRI, which clearly stated constrictive pericarditis with Septum bouncing, but Dr. Mumtaz, wanted me to do another a catherization thru the left juggler biopsy test for restrictive cardiomyopathy, but I told him I wanted him to roll the dice and just do surgery. Honesty, Dr. Mumtaz still was not sure he was willing to do the surgery but said he would consult with a few folks and call me back.

    On 6/13/12, my surgery was scheduled, but only for a right side biopsy of my pericardial sack. What happened during surgery, for some reason, Dr. Mumtaz could NOT enter the right or left breast side, so he was forced to open my chest cavity up. Through surgery, I was intubated two times due to lung issues and three breathing tubes were used. I woke up in ICU 3 days later suffering severe encephalopathy. I was so psychotic and hallucinating, my mother even told Dr. Mumtaz, that my daughter is either brain dead or has now brain issues from the swelling she suffered in surgery. Dr. Mumtaz told my mother that when he opened my chest up, that my pericardial sack was so hardened around my heart that he had to peel it off like an orange and he never saw a sack that was NOT thickened. Dr. Mumtaz feels this constrictive pericarditis was a cause from radiation suffered as a young child. He also made mentioned that the radiation given to me in 1965, also has radiated my lungs, calcified some valves in my heart and put a small calcium deposit on my esophagus area, hence causing breathing tube issues during surgery along with very weak lungs.

    Long story short, I spent 9 suffering days and a setback while in ICU, but if you saw me today, you would never know what took place about 1 ½ months ago. I feel I have been given a second chance at life. I recall being in ICU and at several times opening my eyes and seeing another elderly lady, a middle aged woman and a very young girl who kept watching me, I was assuming when things were going wrong with me and my breathing tubes, I would see the young girl pull down her headband and hold her ears. I even remember at one point the specialists saying they were having issues w/the breathing tube pulling it out, and honestly I believe I felt the tube being pulled out starting from down near my stomach to out my mouth, hence my second intubation that lead to my brain swelling.

    My second chance at life has become two fold. While in ICU, I felt at one point I was dying. I recall going up in the air and going through these huge heavy wooden beautiful doors, then I saw blackness and in my head I said, I have to STOP, I am not ready to see the pearly gates or some great light. I need to be here on earth for more time to change my life and help others and my parents. I honestly remember praying to myself five times, “Lord, please don’t take me now”. After I came through several days later, I shared that story with my mother and she said to me, Well you know what, at one time while you were in ICU, I did say to you, “Linda, do you need to tell me something” and she said, I shook my leg five times. Was this when I thought my life was ending?

    During recovery on the heart floor one nite I had an idea that came over me that would not let me sleep. During my whole stay in ICU and on the 7th floor for all heart patient recovery, I held an Angel in my left hand (I am right handed). My idea came to me to tell me that I needed to start Rhino Angels. My non-profit organization to give back to others my testimony of radiation via Wilms Tumor as a young child back in the late 1960’s and what one might experience as an adult in their late 30’s to 40’s due to radiation. Also I need folks to know they MUST become their own medical advocate. The story of the Rhinos is that they on the other hand they are a very take charge species. Focused and unafraid, thick-skinned and unstoppable, they take massive action. Did you know their skin is at least two inches thick? They NEVER give up and stay strong no matter what comes their way!

    I am still at home recovering physically and have started my idea of Rhino Angeles and you can see the infancy stages of this idea at http://www.facebook.com/rhinoangels

    I hope this gives others hope no matter what they are going through and also to remember to try to eat right and if you feel one doctor is not truly going to hear you out, go find another one, there is ALWAYS someone to listen.

    So my Rhino Angels so far have been the Lord, Dr. Mumtaz, my mother and father of whom I owe everything to so far!

    I felt compelled to tell this story to encourage someone else who suffered radiation in that late 1960’s for Wilms tumor and now in adult life have suffered thyroid, heart and lung issues.

  5. From Cancer to Gold…

    Now that it’s been almost a year, my treatments are over and waiting for all final results, my oncologist, Dr. Scalzo has approved me to use Skinny Fiber again. My eyebrows & eyelashes grew back so quickly. My hair is starting to gain momentum, lol. Skinny Fiber has help my hair come in beautiful and grow a good rate. I also use Ageless on my skin. Chemo skin is aweful. I had burns and very dry skin from the chemo, but as soon as I started using Ageless, my skin healed. It’s amazing what Skinny Body Care can do for your mind, body and soul.

    My story.

    Good morning. I just wanted to share. Some of you know I was diagnosed last November with Breast Cancer and had surgery in December just after Christmas.

    I then followed up with 20 weeks of chemotherapy

    It’s been a rough 9 months, but things are going well. During this time I had to go on family leave from my J.O.B. You know what that stands for right. Just over Broke!!! Well my JOB made me even broker. See I work as a Teaching Assistant and during family leaves there is NO disability insurance as we work for the state. So it was imperative I find a way to bring in income because CANCER is NOT CHEAP.

    Tuesday 9/4 is my last of 30 radiations. Hurray!!!

    I have a NO EXCUSE POLICY. If you say you can’t, you can’t. Change your mindset. If I can do it, you can too!

    No Excuses. I built my business from my sick bed. I under went 20 weeks of chemo treatments that made me very sick and weak. Some days I could only sit up 10-15 minutes at a time to work my business, but I stayed consistent. I worked my business from my sick bed. In between the weakness, throwing up, headaches, losing all my hair but I kept my spirits high. I believe that if it wasn’t for my Skinny Body Care business and Skinny Body Care family, I would of not done as well as I did.

    I’m definitely strong and a survivor and because of this I know I can do anything. So join me today in the best business ever. http://www.SkinnyPreneur.com

    You have to plug in daily. If I can do this business anyone can. There is no excuse to building the right business and that business is Skinny Body Care.
    I brought in over 120 people to my business in less than 6 months. I went from Bronze to Gold and almost a Platinum working Skinny Body Care part time.

    Join the best business there is. It’s so easy. I will teach you how I did it, but you must be committed to building your business and follow directions. So what’s stopping you? Get rid of the excuses today.

  6. My story

    In Nov. , 2009 Dr. Paola Zamboni announced that there was blockages in the azygous (major vein in chest) and jugular veins in 90% of people with MS. It was confirmed on a Doppler ultrasound that I had blockages in both my right and left jugular veins. That summer I fundraiser and flew out of country to have my blockages opened. After my treatment I noticed startling changes; was surprised with the colour on my face and my voice was stronger and clearer. The second treatment I took was approximately 1 1/2years later. I wanted the doctor to fix my hypoplastic or undersized vein . Instead he put a stent in my renal vein that was 90% blocked and my azygous vein. When I returned I noticed my bladder improved a lot. My feet were warm to touch which was a sign of good circulation.
    Then a few months later I noticed my feet and legs swelling with edema. Without hesitation I went to my local doctor and showed him my feet and legs as he quickly made an appointment with a vascular doctor.
    I had been waiting for 6 months to see a specialist for my painful swollen feet with pitting edema. Anything pressing on my legs would make an indent for those of you who aren’t familiar with edema. Walking started to be very labored and painful as well and I have difficulty putting on my shoes.
    Now I was waiting for my specialist to see me, treat my fluid build-up in my legs and life would be a little bit better. The heavy feeling in my legs would go away and my mobility would improve somewhat.
    After waiting patiently for 6 months I got a devastating call from the specialist. It was the secretary for the vascular doctor that I had an appointment with. She quickly asked for me and said your appointment has been cancelled. The secretary said there was nothing he could do. Then she mentioned it was my MS and their was nothing the doctor could do. . I quickly got off the phone looked down at my feet and started to cry. What would I do now.
    Then I remembered Dr. Arata, a renowned Interventional Radiologist who specializes in Phlebology. He says he has treated this swelling before it can be corrected with a venous ablation. He has treated over 2000 patients with MS and has improved their quality of life. Some people respond better than others but this is most likely due to how long they’ve had the disease.
    Where do Canadians go that have had the treatment in the United States. Can we go to our family doctor or see a specialist? So far I found out my family doctor won’t renew any medication and doesn’t want to help or see me as a patient anymore.
    We definitely have lack of follow -up care in Canada. I didn’t think much of this until I returned from the United States after my second vascular procedure and ran into a complication.
    I wrote to senator Jane Cordy because I was denied after care because of MS? Then came my response from senator Jane Cordy
    “Unfortunately far too many MS patients have been denied treatment after they return to Canada. That is unacceptable and certainly doesn’t follow the Canada Health Act. Bill S 204 which I sponsored asks for follow up care for Canadians who have received vascular treatment outside of Canada”
    I definitely had a relapse from my previous vascular treatment confirmed by an Dr. Arata, an interventional radiologist. My swelling and edema was due to narrowed jugular veins and have to be ballooned opened for sufficient blood flow to get through to the rest of my body.
    Now I need to get help back in the U.S. Please help me my feet are swelling up vey fast fluid traveling up legs with pitting edema and cant see my specialist because I have MS. This has been going on for 7 months and can be corrected with vascular treatment. My appointment has been made and need the community to help reach my goal before Christmas. Go to my donation page Gofundme and please help me I’m scared.

    Patricia O’Connor
    http://funds.gofundme.com/index.php?route=widgets%2Ftypeb&d=4686&c=1&url=%2Fxawcs&t=4&v=%22+rand+
    funds.gofundme.com

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