Guest guest Posted October 11, 2003 Report Share Posted October 11, 2003 Hi Jeanmarie, I read your post just before I went to bed last night. I thought - man, what a kick in the butt. Life just really isn't fair. And I'll tell you that from this point on starts the 5th time I have tried to respond to your post. I honestly don't know what to say to you. I think as a group we sometimes joke and tease like we do because we need the outlet and also because we just don't know what to say. Honey, we all need support. I'm so glad you have joined the group - you and all the rest who have joined because I really need your help. I have a great family. I married Mr Wonderful 32 years ago. I frequently ask myself what I ever did to deserve to be loved the way he loves me. Our 2 sons and their wives are really supportive. My Mother and my Sister live with us because I need the help, etc., etc. My sis has Fibromyalgia and I think she will soon get the added diagnosis of Lupus. She is older than I am, and still able to work. I'm 51, she is 54 (divorced). Stay at least a little angry. It can be of help at times especially when doctors don't do their jobs, etc. But also know that anger can sometimes eat at you way too much. That's one way this group comes in handy. You can say what ever you think and express what ever you feel. You won't be judged. I have said some things and then waited for what someone would say back. All I have ever gotten is love and support. I've been told that maybe I should look into something else or what ever, but I have always been given support. I know you were working hard on plan 'A'. It's time now for you to start working on plan 'B.' I've found that plan 'B' ain't too bad. Please keep up with reading posts as best you can. And - please post something as often as you can. We care!! Recently diagnosed Hello. My name is Jeanmarie. I live in San Diego, CA. I am 22 years old and was just diagnosed with Lupus. I have had symptoms since I was 16. My kidneys are failing and are just below 20%. I am to be getting a transplant soon, hopefully. I decided to join the group for support. I have a great family and boyfriend that support me. But I feel like when I tell them how I really feel, I am overwhelming them. So I needed an outlet. I feel so alone and angry that all I do is cry all the time. I am a happy person and I hate this feeling that something is wrong with me and I will feel tired for the rest of my life. I was going to college but my body became too weak for me to go to school and work 40 hours a week. Anyway, I hope that everyone doesn't mind reading all about my aches and pains until I get used to all of this. I guess it is nice to know why I have breathing problems and my joints hurt all the time amoung countless of symptoms. Thank you for letting me rant a little. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2003 Report Share Posted October 12, 2003 Hi Jeanmarie, I'm fairly new too. I'm sorry you're having so many complications, but I think this is a really good group, and welcome. > Recently diagnosed > > > Hello. My name is Jeanmarie. I live in San Diego, CA. I am 22 years > old and was just diagnosed with Lupus. I have had symptoms since I > was 16. My kidneys are failing and are just below 20%. I am to be > getting a transplant soon, hopefully. I decided to join the group > for support. I have a great family and boyfriend that support me. > But I feel like when I tell them how I really feel, I am > overwhelming them. So I needed an outlet. I feel so alone and angry > that all I do is cry all the time. I am a happy person and I hate > this feeling that something is wrong with me and I will feel tired > for the rest of my life. I was going to college but my body became > too weak for me to go to school and work 40 hours a week. Anyway, I > hope that everyone doesn't mind reading all about my aches and pains > until I get used to all of this. I guess it is nice to know why I > have breathing problems and my joints hurt all the time amoung > countless of symptoms. Thank you for letting me rant a little. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hello Jeanmarie, welcome to this group. My name is actually Joanna, but everyone calls me Mojo. I am 39 and I've had Lupus for almost 17 years now. Mostly my kidneys are affected and I have been on Cytoxan (chemo) since November of last year. It hasn't been easy, but it sure helped my kidneys. A mother of 3 boys (Sebastian 9, Kasper 6 and Arek 3), I have a wonderful husband who has always been there by my side. I also have a dog, Pepper and a brand new baby kitten, Peekaboo. I am a proud owner of some fish and two hermit crabs. I was also 22 when diagnosed and just newlywed. I've experienced symptoms for about a year before than, but I've also had kidney problems since I was a teenager, which leads the doctors to believe that these were the real first symptoms. I hope that you find what you are looking for in this group. You have the support of your family and friends already, now you will have the support of people who are going through similar things in their lives. You will never burden us with your problems and I don't believe you do that with your family either. I'm sure they want to know what is happening to you, but it just may be a bit difficult for them to understand it. Take care. Mojo Recently diagnosed > Hello. My name is Jeanmarie. I live in San Diego, CA. I am 22 years > old and was just diagnosed with Lupus. I have had symptoms since I > was 16. My kidneys are failing and are just below 20%. I am to be > getting a transplant soon, hopefully. I decided to join the group > for support. I have a great family and boyfriend that support me. > But I feel like when I tell them how I really feel, I am > overwhelming them. So I needed an outlet. I feel so alone and angry > that all I do is cry all the time. I am a happy person and I hate > this feeling that something is wrong with me and I will feel tired > for the rest of my life. I was going to college but my body became > too weak for me to go to school and work 40 hours a week. Anyway, I > hope that everyone doesn't mind reading all about my aches and pains > until I get used to all of this. I guess it is nice to know why I > have breathing problems and my joints hurt all the time amoung > countless of symptoms. Thank you for letting me rant a little. > > > > > " The LUPIES Store " Come check out our store... > http://www.cafepress.com/thelupies > > " The LUPIES Web Page " > http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " > Check out what your fellow Lupies look like... > http://www.picturetrail.com/gallery/view?username=lupies > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Hi Cradlesinc ??, I am so sorry about your needing us. Welcome to the best support you'll ever find. Here are a few questions. LOL What is your name? What was your diagnosis process ? What Insurance do you have? What was your diagnosis ? Where are you? (state) That should get ya going for starters.. I think if you have been reading our posts you know we are a close bunch that want to know all about you. And we will be here to help and support anyway we can. Love and Prayers, Peggy Florida, ipf 6/04 Worry looks around. Sorry looks back, Faith looks up. Hello Everyone: I have been reading some of your post for quite some time now. I must say, that I was diagnosed on 1/28/08 and some of the things that I have read are very scary. I had never heard of PF and neither had anyone in my family. I had been having a very bad cough for the last few years, but my primary said that it was probably due to sinus infection or a cold, or flu. I trusted his diagnosis. I thought I was having a heart attack on the way home from work and brought myself to the emergency room. they sent me home, but I went to a specialist, to make a long story short, no heart problems. I need to know where I can get information about several things ie. insurance (pre-existing conditions), disability, etc. This is all very new to me and I would appreciate any help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 We're here to help as we can.So just ask away any questions and we'll try to direct you. Pre-existing conditions: Every policy has its own clause. However, if you've had continuous coverage for at least two years in a qualifying plan, then no health insurance can exclude pre-existing conditions except if you're an employee of a state or local government unit, such as if you're a school teacher. Then you're not covered by those laws protecting you. Disability: Assuming you're talking social security, here's a place to start and then come back and ask more: http://www.ssa.gov/disability/ Now, all your conditions would be relevant but some aren't easily measured. For respiratory illnesses, however, they have some specific guidelines. They are here: http://www.ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm We know its scary, but now you've got to turn toward making the most of your life and we're always here to help. >> Hello Everyone:> > I have been reading some of your post for quite some time now. I must > say, that I was diagnosed on 1/28/08 and some of the things that I have > read are very scary. I had never heard of PF and neither had anyone in > my family. I had been having a very bad cough for the last few years, > but my primary said that it was probably due to sinus infection or a > cold, or flu. I trusted his diagnosis. I thought I was having a heart > attack on the way home from work and brought myself to the emergency > room. they sent me home, but I went to a specialist, to make a long > story short, no heart problems. I need to know where I can get > information about several things ie. insurance (pre-existing > conditions), disability, etc. > > This is all very new to me and I would appreciate any help.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Cradle.... your questions depend on your age and if you do or do not have existing ins. Tell us a little about you..married? Kids? Where do you live? I had never heard of PF either and went to Dr. because I had a bad cough that didn't go away and I was so short of breath. I thought I was just out of shape. I found this disease is fatal ONLINE looking for information. I gasped so loudly my husband came running wondering what was wrong with me. I'm 69, Dx (diagnosed) 3-06 and have been fairly stable until a couple of weeks ago. I have now had progression in the disease and I'm on O2 most of the day...not at night. There are answers here for all your questions, don't be afraid to ask. Each one of us has been where you are now so we understand. Nice to have you with us. Mama-Sher, age 69.UIP/IPF, 3-06,OR. Don't fret about tomorrow, God is already there! recently diagnosed Hello Everyone:I have been reading some of your post for quite some time now. I must say, that I was diagnosed on 1/28/08 and some of the things that I have read are very scary. I had never heard of PF and neither had anyone in my family. I had been having a very bad cough for the last few years, but my primary said that it was probably due to sinus infection or a cold, or flu. I trusted his diagnosis. I thought I was having a heart attack on the way home from work and brought myself to the emergency room. they sent me home, but I went to a specialist, to make a long story short, no heart problems. I need to know where I can get information about several things ie. insurance (pre-existing conditions), disability, etc. This is all very new to me and I would appreciate any help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 > > Hello Everyone: > > I have been reading some of your post for quite some time now. I must > say, that I was diagnosed on 1/28/08 and some of the things that I have > read are very scary. I had never heard of PF and neither had anyone in > my family. I had been having a very bad cough for the last few years, > but my primary said that it was probably due to sinus infection or a > cold, or flu. I trusted his diagnosis. I thought I was having a heart > attack on the way home from work and brought myself to the emergency > room. they sent me home, but I went to a specialist, to make a long > story short, no heart problems. I need to know where I can get > information about several things ie. insurance (pre-existing > conditions), disability, etc. > > This is all very new to me and I would appreciate any help. > Quote Link to comment Share on other sites More sharing options...
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