Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Irene, I get seriously ill from perfume it is one of my worst contenders. I know someone here who became disabled after being sprayed with perfume. It is really bad stuff. There was a time it was made of essential oils of flowers (still have voc's) but now they are made with chemicals. There is a website that explains what has happened to perfume, why it toxic, especially to people with damaged immune systems and respiratory problems. Even the Lung Association has a brochure called Scents make no Sense. Alo has a lot of other dangers. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Runny Nose I've not seen any posts complaining about a constantly runny nose, but here's mine. It's been three years now and it never stops. I've tried every over-the-counter medicine there is. I've been tested for 21 different causes and have no allergies. I have no pets. I know it's minor in the great scheme of what you folks are dealing with, but if anyone has had this experience and treated it successfully, I'd like to hear from them. I can't make the connection between my nose and my lungs. Thanks. Jack 79/UIP-IPF 06/05 Looking for the perfect gift? Give the gift of Flickr! Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Irene, I eat a cereal high in fiber, to my surprise it is really good. I never likes fiber cereal. It is called Kashi and it is the Cinnamon Harvest. I got addicted. So did the puppies. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000 Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Mayleen, I'm not allowed to eat high in fiber foods....because it causes severe diarrhea and I dehydrate very easily because of my Crohn's Disease. Most of the dieticians, don't understand what Crohn's patients are supposed to eat or not...and that causes a lot miscommunication and sometimes they make the patients symptoms worse. In hospital, when they brought me a high fiber diet for breakfast, I went and told my nurse, I can't eat what's on the tray because I will get very sick...she told me hold, I'll come in your room and see what they brought you... ....she came, she saw it and told me don't you even touch it, until they bring you the right tray! Hugs Irene Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000 Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro Looking for the perfect gift? Give the gift of Flickr! Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Irene, I understand. I think I posted wrong, it was for Caro. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Hi allDate: Sat, 07 Jun 2008 00:34:04 -0000 Well have been away for a bit. Not having a good day today. Am sinking more and more into depression I fear. Since starting prednisone, I have now gained 15 pounds and still rising. No matter what I do, the scales still go up. Have started pulmo rehab, exercising more, eating healthy, still gaining weight. Just tapered the dose down from 30 mg to 20 mg on the first of June, so I am REALLY hoping that will help with the weight. I can't wear any of my summer clothes. Birmingham for me is a week from Monday, appointment is Tuesday morning the 17th. I can't believe it is here already. I am so nervous. I wish it was over. I am so tired all the time. Today was just a BLAH day. I have done good just to make it through the day. I so hate this disease. Having terrible constipation, too. Have never had it this bad in my life until this year. I feel like I am becoming laxative addicted and that scares me, too. Has anyone else had this problem with prednisone and Imuran? I have started on Cymbalta 60 mg for the neuropathic pain from my back and the restless legs and she said it is supposed to help with the depression, but I can't tell it. I have been on that since April, too. I do feel like it is helping with the neuropathic pain and the restless legs, but I don't feel any help with the depression. I feel like I am wallowing in a pity pot, because so many of you have it so worse than me. My sats dropped again today at pulmo rehab but not bad enough to be worried. She said we are moving up to level 4 next week on the exercises next week so that will be more strain on the body. I have bruises all over my legs from doing the workouts. I can just bump something and my leg turns black and blue. I look like somebody beat the crap out of me. My stomach is distended and I look like I am 6 months pregnant, too. Ok, I guess that is enough Woe is me for today. Haven't meant to be hiding out. I have still been reading posts everyday. I haven't forgotten anyone, I have just been wallowing --Caro Looking for the perfect gift? Give the gift of Flickr! Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Irene, Hi How are you doing ?? I am having exhaustion again, going to aly down for a little while. My chest hurts. How is your rash doing ? Have a tornado warning 45 minutes from here. God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Saying Hi to Everyone! ((((Joyce))) ) How are you? I Hope you're feeling much better! How's the rash cleared? How's the new hat?((((Zena)))) How are you? Have you had your heart cath yet?((((Beth) ))) I Hope the rash has settled down!How's ((((Brett))) ) doing? I Hope his doing better!((((Leanne, Mayleen, Bruce, Sher, Jane, Vicky, L, Gwynne, Peggy, Geeta)))) How's everyone doing! If I have forgotten anyone...I'm sending ((((Hugs)))) to all of you!I Hope you're Enjoying the weekendIt's pretty cold over hereIrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Hi Irene, How are you ?? Now you know how I got MCS, then how I got ILD (only one of 2 ways), what you don't know is 2004 the year the hurricanes hit (Frances, Jeanne) It was May 2004 , I had just had 3 fybroid tumors removed the size of a grapefruit each. Just 2 months before the hurricanes. It took 2years for those to be removed, by then I was weak, one more month I could not have the sugery. I survived that one by one month. As best I can recall : 1992 Hurricane Lost it all !!! Homestead, Fl. (August 24) 1992 Accident (december) No work for 5 years almost Closed Head Concusion, TMJD, Severe Chronic Headaches, Cervical Damage 1993 Accident Herniated Disk, Neck & Back MFPD 1997 Accident Lower back Herniated (not a repeat) FIBRO 2001 Father Passed 2002 My GreatGrand Baby Passed (yes great) all mine !! Accident (me) 2004 Disk Collapsed Large Fybroid Tumors Removed , Suffered Bladder Damage Needed to be Removed and fixed, was crushed Hurricanes MCS, SAD, ARH, IRD, ILD, VCD, CE, I have more plus, additional undiagnosed symptoms such as edema of the extremeties and face, abdominal pain, difficulty swallowing, painful joints, low body temp on occassion, dry eyes, nodule on thyroid growing, palpitations, we'll see what shows up next. this just me, has a similiar road. I cannot remember them all. So I keep a list in the car and on the wall in case of emergency. 2005 Hurricane Wilma - what ever was left by then. You can still fit some highlights in there !! Ha Ha One of the many molds in my home : Stachybotrys toxic Black Mold (My Home Office) From Mold Help.org However, if they have been exposed to the dangerous molds such as Stachybotrys or Chaetomium, they could suffer from a myriad of serious symptoms and illnesses such as chronic bronchitis, learning disabilities, mental deficiencies, heart problems, cancer, multiple sclerosis, chronic fatigue, lupus, fibromyalgia, rheumatoid arthritis, multiple chemical sensitivity, bleeding lungs and much more. That does not cover it all , however hope it helps ! God Bless !! dragonflymcs Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14 < Click on me !! Mayleen> > > Mayleen, what is MCS?> > A few suggestions and my own personal experience. In my recent admission to hospital, I've met a few patients> and they had invited me to their room several times, so I won't be in my room all by myself with the tv on lol!> > So one day I took them up on their offer and I visited them. One of them let me sit on their bed because I was about > to fall on the floor. I had a pole with 3 pumping machines and about 4 IV lines running through it. We chatted for a long > time and we discussed our medical problems and we exchanged ideas on how to deal with an NG tube in the nose for > the next 2 weeks, the fluids that they were suctioning from our stomach's... .chatted about life in general, we got to> laugh and use our sense of humours.> > What I'm trying to say, as I was telling my story and how I ended up in the hospital, one of the patient told me "I will > never complain again in my life, Irene you've been worse than me and I'm here complaining for nothing. I told him,> you have every right to complain about and vent.....> > Honestly Mayleen, I cannot imagine what you're going through...I Hope soon you'll find the right dr's and receive the > best medical attention you deserve. One thing I also learned in my experience, is research about my illnesses and learn > everything possible. I have found what works and doesn't work in medications, etc....> > In my experience, I have learned to speak up my mind and if something is going wrong with my treatment, I will > definitely say something. I carry a medic alert bracelet, a printed copy of all my allergies, medications, illnesses> and surgeries.> > I can tell you also, that I have gotten in a lot arguments with dr's over the years for the poor treatment etc, I was> receiving. Mayleen you need to stand up and tell the dr's that you're in need of serious medical attention. You have> to keep fighting for yourself and for your health. Over the years I've learned to talk medical terminology or in there > medical language with my dr's....> > When and if I present myself to emergency room they make a copy of the list and they follow protocol until I'm > discharged.> > This year, I contacted Patient's Advocate department 3 times about the treatment (within 3 weeks apart) I received in ER...> can you do the same for the hospital you received the treatment.> > I'm only asking because their might be other patients in the same situation as you, that are getting the same rude, attitude> treatment etc...from the medical professionals.> > Over the years, I have changed so many dr's because they weren't willing to help at all. Right now my dr's are fine. > > Are there any foundations that deal with the illnesses you have? > Can you change hospitals, to a hospital that specialize with what you have?> Can you find specialists in your area, or if you can travel to another hospital in your area...that have dr's that specialize in MCS> write them a letter about your health, explaining what you're going through on a daily basis, meds, treatments you have tried, and> how it's affecting you....> > A few years ago, I did write a letter to a dr...and I can tell you his still my dr! Mayleen once you find the right dr's, you'll see it will > make a big difference.> > A few years ago, over here in the newspaper.... .there was a story in need of a family dr> A patient had a hard time getting an appointment or they were not accepting> new patients.... she decided to run an add in the newspaper about her needing help and medical attention, that soon> after the ad was run...there were so many calls she received from the local dr's willing to help.> > Hugs> Irene> > > > > > ____________ _________ _________ __> Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Hi Irene, I need to call Hospice and tell the nurse to get her lil fanny over here and give me the once over although I feel pretty good and for that I give all the credit and praise and glory to my Lord. My sugar was a lot better today, highest it went was 217, I dunno why it jumps like it does. I put my 3lbs back on but you watch by next week, I will have lost it again, go figure. Oh well, hopefully Gene and I get to do something together this weekend. Thanks for checking on me. God bless you........ Love, Vicky81856Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Hope you are feeling better soon, Vicky!! Hugs from me!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi Subject: Re: IreneTo: Breathe-Support Date: Tuesday, July 29, 2008, 10:06 PM Hi Irene, I need to call Hospice and tell the nurse to get her lil fanny over here and give me the once over although I feel pretty good and for that I give all the credit and praise and glory to my Lord. My sugar was a lot better today, highest it went was 217, I dunno why it jumps like it does. I put my 3lbs back on but you watch by next week, I will have lost it again, go figure. Oh well, hopefully Gene and I get to do something together this weekend. Thanks for checking on me. God bless you........ Love, Vicky81856 Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. Quote Link to comment Share on other sites More sharing options...
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