Hi I Am New Help!! Long Story

Discussion in 'Fibromyalgia Main Forum' started by TenderHeart, Apr 5, 2003.

  1. TenderHeart

    TenderHeart New Member

    Hi everyone my name is Reta I am 44 years old. I have 3 wonderful children 2daughters ages 23 and 20 and a son who is 16. Also married to a wonderful to my highschool sweetheart for 25 years now. Who is very supportive. I have been fighting getting a dx of something for over 6 years. It has been very aggravating to say the least. November 2002 was dx with SLE and osteoarthritis. Have other things going on also. A good friend of mine sent me this article through email about this site.

    She is very concerned and thought would be of use. Main reason being. Before I was dx with Lupus I was not doing all to bad I mean I had the pain and other things going on but could handle it. But ever since January 2001 I have been having major problems and they just keep getting worse. On this date a train derailed in our home town some of the cars derailed which were carrying anhydous ammonia. About 2am our daughter came running into our bedroom said mom wake up wake up. I awoke she yells it smells like perm in here. My hubby awoke we both jumped out of bed. The house just reaked of ammonia. WE woke son up. Hubby works for a major trucking company which hauls diesel, anhydrous, gas, etc. He says omg it is anhydrous ammonia. We turned on radio but nothing , tv nothing. We looked outside and we could not see any further then our living room window.

    A huge cloud of white. Frantically I began to call 911 busy busy, so called my sis who lived across down she had nothing up there. While talking to her my mouth filled with this flem that was choking, I could hardly talk was very slurred speech. My stomach was turning and eyes were burning. The kids and hubby had all the same except fot the flem in mouth. Hubby grabbed us all wet rags to put over face. He tried to go outside to see if we could get out but could not. Was to dangerous the level of ammonia.Our house filled with more fumes. It was 2 hours before we were able to get out to the car. Which reaked!!! but we got out and up on the hill where there was fresh air. Hubby stoppped by gas station to get us all some water. But now was so nausiated and sick could hardly breath.

    As we looked over city all you could see was this huge plume was just like something out of a si-fi thriller. It was the most horrific thing I have ever been through. The look in my kids eyes thinking we were all going to die will never be erased. And the helplessness I felt being their mother and could not do anything but wait. Anyway to make this shorter as so much to tell. But bottom line is. We did get back into our home later that day. First try in we had to leave as was to bad yet. Second time we stayed. But had alot of cleaning and me feeling so aweful and pain that was so intense. Ended up at doctor being put on nausea meds, inhaler, antibiotics, gels for nose and mouth ulcers, had to call my stomach doc as I do have acid reflux but since this have had to have it doubled as tummy very bad. And now sensitive to all harsh drugs. The flem in my mouth was all toxic and went through my body.

    All I know is since that devasting nite everything I had going on became amplified!!!. Joint pain really bad in shoulder and knee and hips. Feet have been severe.Ended up at a foot doc having xrays. He said I did have plantervasitis and a spur but it was not bad enough to provoke what was going on. He said whatever I had going through my body and at this time did not have a dx of lupus yet. But in my heart I knew I had it. He said it probly had to do with lupus. So we did therapy but it made it worse. Ended up with cam walker on foot. But in this time my hip worsened ended up using crutchs and having to have a wheel chair. when got out of bed could not stnd on feet. Then the swelling began. Right after I got my dx of lupus november 2002 we were told my mom did not have long to live. She was battling cancer first was the esphogus then the lung. Cleared the esphogus but came back in lung and she was to weak for any surgury. So hospice came in and I was with mom 24 hours a day almost all the time. Taking care of her. The lifting etc got to be to much. Was walking out of a grocery store and felt my other foot go. Was like exploded had xray ended up torn ligaments in foot. Another cam walker on other foot.

    It was real tough trying to handle myself , my mom, my family. But i did it and it came to the point doctors said you cannot keep it up. But I had to. We lost mom Dec. 19th 2002. It was very hard but I knew I had done everything I could. And was with her the early morning she passed away. I have gotten worse each day. Our house never did get cleaned after the spill. I did what I could as far as cupboards etc. But the furnace and air ducks the railroad backed out of. So ended up getting a lawyer. Who is still working on my case. At anyrate this is way to long I know but I see my rhuemy on tuesday. I just had two of these bizzare things on leg lanced opened and drained. Is the 3rd one I have had. Last year ended up in the emergency room as doc thought was clot. After admited and home ended up back in er again. They said it needed cut opened and drained. WAs a major infection in body. I said from out they had no clue. Put on antibiotics. Have had little ones come and go. But Thursday of last week had big on cut opened again and drained an a smaller one. Doc said is some form of bacteral infection. Put on antibiotics again. They start off little with a crust almost inside the turn bigger harder and purplish. Very painful.

    I was just wondering after alllllllllll this I have written if it is possible all the things I am going through now and cannot seem to get better just worse could have been caused by the ammonia I was subjected too? Would appreciate any input. All I know I am now very sensitive to any smells out of the ordinary. It takes my air away. I still get really bad nose ulcers and mouth. Alot more going on but think I bettter end this for now. Please anyone would greatly appreciate you input. Thankyou all and sorry so long. Just not sure how much more pain and suffering I can deal with. Hugs to you all. Love Reta
  2. goingslowlycrazy

    goingslowlycrazy New Member

    Hi Reta and welcome to our family!
    I am so, so sorry to hear what you have been going through...and do I think that the ammonia spill will have worsened your conditions? That would be a big YES. As far as my research shows, we are more prone to chemical sensitivity (which also includes amplified or odd reactions to medications) so I should think that such a devastating incident would have a profound effect on you.
    Where you take it from here though - I am stuck for. I should imagine it will take months for the ammonia to fully leave your house. Even leaving the windows open would potentially let in more ammonia still left in the outside atmosphere.
    There are a lot of wise people on here who will be able to advise you better than me, but in the meantime, you have my sympathy and a very warm welcome.
    hugs
    Mary x
  3. swanee

    swanee New Member

    Hi Reta,
    I've just come onto the message board myself
    and then I read your message. I too have had longillhealth
    and several operations and quite a few family deaths
    I feel it is a lot to do with stress and trauma and individual body makeup. I also have mouth ulcers and some kind of 'disease' inside my mouth that is just irritating!
    I am the same age as you and my sons are 26, 23,and
    15years. I also have a wonderful husband, whom I met at
    13 and married at 18-we've also celebrated our 25th anniversary! I just felt I had to reply as not many my
    age group and it was so much like my story. I have to go as brain has stopped working! I cant stay on computor for very long.
    Keep strong and as I have realized from this-you are not alone in this! God Bless
    Swanee
  4. layinglow

    layinglow New Member

    My Gawd, Hon! What an awful tale of horror!

    The lawyer is imperative, find an aggressive one, if this one is not moving fast, and giving you a list of things to do.

    One thing I would highly suggest is getting medical documentation from specialists on your condition. I don't know what size town you live in--but I would travel to see specialists if needed. You need to not only cover yourself, and your immediate, disabling illness, but your children and husband can have implications in the future.

    I would definitely find a specialist in environmental medicine, and also a specialist in chemical sensitivities.
    You and your whole family need to be seen.

    Prior to this you already had a compromised immune system, and now you will probably become very chemically sensitive.
    I grew up in the hometown of Dow Chemical and spills and toxins are and were reoccurant. I can tell you they have had a huge impact on my health.
    Ammonia Spills are nothing to fool with, they are very dangerous!
    I don't know how proficient you are with the computer....but I would gather all the information that you can muster, on the short and long term exposure to anhydrous ammonia. Print this all out. Make sure as I said you have a very industrious lawyer--and get the medical documentation, KEEP COPIES FOR YOURSELF, of ALL medical documentation pertaining to this---Lawyers have been known to lose things. You have a right, and will assuredly be compensated for all out of pocket expenses, damages, and future damages in regards to this spill. You must be very proactive in this, for you, your spouse, and your children.
    Best wishes,
    LL
    [This Message was Edited on 04/06/2003]
  5. pam_d

    pam_d New Member

    First I want to say Welcome and then, how sorry I am that you are going through this awful ordeal. Reading your story, I definitely feel there is a connection between the train derailment and your exacerbation of all your symptoms. I do not know much about anhydrous ammonia specifically, but there is a definite connection between toxic chemicals & substances in our bodies, and worsening of FM/CFS. Please research everything you can about the effects of this ammonia on humans. Have you talked to neighbors to find out if they have experienced any prolonged effects? How is the rest of your family doing? Did the train line assume any responsibility in making sure residents were checked out thoroughly----I can't believe the nose/mouth ulcers, plus all your other physical complaints are normal, if you hadn't experienced them before. I would research EVERYTHING on this ammonia, you have to become a detective on this one. Then I would try to find a doctor who is knowledgeable on toxicology (you may have to look hard & travel a distance). Depending on what you learn, I think I would contact an attorney (I don't believe in frivolous litigation, but this is hardly frivolous).

    Please keep us posted here on what you find out. I don't want to create alarm, but I personally would be very concerned about my health & my family's health if I was in your position. This is a very supportive, caring board, we DO want to know how you are doing with all this! Please let us know, and I'm hoping you & your family do emerge from this horrible ordeal okay....

    Healing Hugs,
    Pam


  6. layinglow

    layinglow New Member

    Medical literature indicates that exposure to anhydrous ammonia can lead to nasopharyngeal and tracheal burns, bronchial and alveolar edema, and airway destruction. It can also cause skin burns and related skin conditions, including dermatitis. Long-term consequences can include chronic lung disease from inhalation, cough, asthma, and lung fibrosis. Ulceration and perforation of the cornea can occur months and weeks after exposure to the anhydrous ammonia, and blindness may ensue. Cataracts and glaucoma are also potential effects. Competent medical care should be sought if symptoms develop after exposure to anhydrous ammonia.
    Lawyers with Robins, Kaplan, Miller & Ciresi L.L.P. are presently investigating the cause of the derailment and the long-term health affects to those exposed to the anhydrous ammonia.


    Environmental Protection Agency (EPA)
    Ariel Rios Building
    1200 Pennsylvania Avenue, NW
    Washington, DC 20460
    202-260-2090
  7. TenderHeart

    TenderHeart New Member

    Hi to allthat responded to my post and thankyou so much. Sure hope I am doing this right? I would like to thankyou all!! for your concerns and sympathy and advice. I do have a good lawyer in fact is a whole firm. They brought in specialist from all over to learn about the effects and how long can effect your life. I have dug up what I can wrote a journal etc. It is now before the railroad. I see my rhuemy on tuesday will be talking to her about it. As have lots going on. They do have all my medical as did go in after all this hit. Along with family. Guess I researched the ammonia can just didnt come up with much. Just trying to learn all I can on lupus and everything else I have going on. But will keep you all informed. Thankyou so much for your support. And for making me feel welcomed. Hope you are all dong well today. Hugs to all. Love Reta
  8. pam_d

    pam_d New Member

    One more thing... please think seriously about finding a toxicologist, as I said, it may be a drive; do an internet search for one in your region! I think you need evaluation by someone who is an expert in this specific area, it will add weight not only to your case legally, but may offer some specific solutions for detoxing from this ammonia assault on your bodies. I pray things get better for you & your family, and neighbors, and do please keep us informed on how things are going....BTW, the journal is a great idea, DOCUMENT everything!!

    Hugs,
    Pam
    [This Message was Edited on 04/07/2003]
  9. lupiefilly

    lupiefilly New Member

    I am new here too. I am here for lupus mainly, but your post is very interesting, and I'm "glad" that I read it. I suffered from a similar situation. I was poisoned by toxic fumes from a floor stipper when I was a janitor at a school here. It affected my liver, and I became quite ill. That was a few years ago now, and I was diagnosed with lupus in Dec. 2002. I do feel that the environment does play a role in autoimmune diseases, That's why I found your post so interesting. I am from Canada, and new rules have now been put in place to monitor the toxicity more than before. I'm "glad" I read your post, and please keep us informed as to how you make out with your situation. Hope you and your family get the help you need. Good luck with your appointment today. lupiefilly Love these smiley guys
  10. lupiefilly

    lupiefilly New Member

    I am new here too. I am here for lupus mainly, but your post is very interesting, and I'm "glad" that I read it. I suffered from a similar situation. I was poisoned by toxic fumes from a floor stipper when I was a janitor at a school here. It affected my liver, and I became quite ill. That was a few years ago now, and I was diagnosed with lupus in Dec. 2002. I do feel that the environment does play a role in autoimmune diseases, That's why I found your post so interesting. I am from Canada, and new rules have now been put in place to monitor the toxicity more than before. I'm "glad" I read your post, and please keep us informed as to how you make out with your situation. Hope you and your family get the help you need. Good luck with your appointment today. lupiefilly Love these smiley guys

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