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Medical Forum / Diseases and Disorders / Lupus / January 2004bad things
hi all Lupus is renowned for having bad things happen to you but life is awful how it has a habit of knocking when you are down as well My Story is too long to tell after 45 years but I am still here. If anyone is interested they could visit my web site to read what the disease can do. www.erina.co.uk It was cathartic for me to set the website up and has helped me to come to terms with the disease. Warm wishes to all Erina Hugs Erina:))) Thank you for being brave enough to open your time story. Sharing makes others see they are not alone. Bruce On " The great white north , -35c , cloudless blue sky , hore frost sparkling on everything ." Hi Erina, I admire people who can write the story of what this disease can do to their lives. I have often thought of doing that, but have never been able to express what it is I go through when I am very ill. My thoughts seem so muddled somehow. Thank you for sharing this with us. My best to you. BJ-Sk. Canada > hi all > Lupus is renowned for having bad things happen to you but life is awful how [quoted text clipped - 5 lines] > Warm wishes to all > Erina Erina, I read your story in it's entirety and have great compassion for all that you worked through. You bravely fought through all your trials and have successfully lived your life in full, raising a daughter who in turn produced a grandson for you, and all that after working so hard and long to become a medical doctor! Amazing considering the severity of your illness! I too had a rocky course from youth onward with my illness and also have survived all the bumps in the road now at age 52(almost) - but I did it with the support of family, both 'nee' and my husband and children; support that you had to do without and your courage is remarkable. You are brave to share all the ups and downs of your 'saga' and I know your story will help others who feel there is no end to the misery and who need to know there are others out there who share in the pitfalls of this insidious illness. Good luck and best wishes for continuing strength to you, your daughter and your grandson!  Signature((((Hugs)))) from Shelagh | hi all | Lupus is renowned for having bad things happen to you but life is awful how [quoted text clipped - 5 lines] | Warm wishes to all | Erina > Erina, I read your story in it's entirety and have great > compassion for all that you worked through. You bravely fought [quoted text clipped - 13 lines] > Good luck and best wishes for continuing strength > to you, your daughter and your grandson! Hear ! hear ! I read it all too and totally agree. She "wrote the book" on the difficulties of coping, getting (properly) treated and such like sticky blood, before they knew as much as they're supposed to know now. Hugs J Shelagh , You have been through it all as well please let me know your story Do you have a web site? Warm wishes Erina > Erina, I read your story in it's entirety and have great > compassion for all that you worked through. You bravely fought [quoted text clipped - 26 lines] > | Warm wishes to all > | Erina "Erina" wrote in message | Shelagh , You have been through it all as well | please let me know your story Do you have a web site? | Warm wishes | Erina Hi Erina, I have been there and done that alright but I find it better *for me* to not rehash all the traumas and struggles and so have not 'as yet' put my story to paper for public consumption. I have it all chronologically written down just for my doctor and health records generally but haven't shared with too many people all the trials there can be while living with lupus. I try to focus on the positives and most of all to stay in the present, while enjoying every moment because as you know too well, it can all be taken away at any moment and so suddenly too! My best wishes for your continuing in good health and a long and happy life! Hugs for you, from Shelagh I do have a lupus information site for newly dx'd and patients with questions at http://continue.to/lupus Most of our newsgroup members have posted their 'location' on my guestmap, maybe you would too as I am geographically 'challenged' and love to see where everyone hails from <g>! Sheath, I have visited your web site and it is good. One thing I noticed in your section on cerebrates is you say there is no test for it . Dr Oxford in England has developed a test .I have been tested several times as this is the form of Lupus I have . He use MRS scan which tells you levels of chemicals in the brain There eared Two sugars that are abnormally high in Pulps when it is flaring. > "Erina" wrote in message > | Shelagh , You have been through it all as well [quoted text clipped - 21 lines] > guestmap, maybe you would too as I am geographically 'challenged' > and love to see where everyone hails from <g>! Thanks Erina... I will update that as well as a couple of other out of date sections I've noticed (and dead links etc.)... 'procrastination'. I believe the SPECT (single positron) scan can dx the cns vasculitis etc. as well? also the lab values on 'cytokines' are indicative of cns involvement ... I'll have to get someone who knows alot more than me to write out a piece for the section or I will link it to a site on the web ... Signature((((Hugs)))) from Shelagh | Sheath, I have visited your web site and it is good. One thing I noticed in | your section on cerebrates is you say there is no test for it . Dr Oxford | in England has developed a test .I have been tested several times as this is | the form of Lupus I have . He use MRS scan which tells you levels of | chemicals in the brain There eared Two sugars that are abnormally high in | Pulps when it is flaring. Hi Erina Thank you for your story...it is humbling as a fellow cardiolipin sufferer, and stroke sufferer, and doctor and mother... to read how you coped. In comparison my trials are vastly less. Well done to you and thank you for sharing it with us Lyndal > hi all > Lupus is renowned for having bad things happen to you but life is awful how [quoted text clipped - 5 lines] > Warm wishes to all > Erina > hi all > Lupus is renowned for having bad things happen to you but life is awful how [quoted text clipped - 5 lines] > Warm wishes to all > Erina Hi, I have had a look at your website, its really well done. I see you had a dignosis in 1959, thats really early! I had one in 1979 o was it 1978, and at the time (I was 12) it was considered a very rare disease. You say you think your early experiences were related to you developing lupus, do you think lupus is brought on by stress? Also you say you have tried not to take drugs as much as you can, this accords with my own philosophy. Did you do anything to try to keep the lupus at bay like lifestyle or dietary changes? I have done a load of them, not all intentionally to keep lupus at bay, some for other reasons. I am sure we all would like to learn anything from your experience. I see what you say about being destined to be a loner. Well as I have had lupus since I was 12 I feel it has also affected my social life. I hope you get some social support from the newsgroup. Best wishes, Lynne Signaturefor an alternative look at current events, go to http://www.greenpeace.org.uk/ Lynne, My philosophy is not to take drugs for every ache and pain . I have taken them when necessary but then stop when whatever they were given for improves. Every drug has it side effects and that only confuses the issue.I prefer to know when my lupus is flaring so that the doctor can recognize the symptoms and start treatment promptly.Also I feel better when I am on as few drugs as possible. I all along have tried to avoid things that can trigger the lupus such as sunlight ,vaccines ,stress.Stress and over tiredness certainly seem to set off the disease .Tiredness is accumulative in that it doesn't recover after one nights sleep and if you continue overdoing it my disease flares.But I had a considerable overload of activities and as I said live knocks you when you are down.My early childhood and adolescent where very painful and this I feel sets off the immune system to react abnormally, as is the case in lupus. The fact that it appeared during my first year in collage is also suggestive, the disease tends to flare when the stressor is over. In my case it used to take about 6wks to flare. I had to learn to lead a healthy life style and to eat well for my daughter sake as well as mine. the disease is a never ending battle . How old are you now? I am 64 and retired and life is easier. Warm wishes Erina > > hi all > > Lupus is renowned for having bad things happen to you but life is awful how [quoted text clipped - 24 lines] > Best wishes, > Lynne Hi Erina, I believe that stress and getting over tired are two of my worst enemies. I find the fatigue somewhat debilitating, but always seem to push myself to do as much as I can. I get down on myself otherwise, feeling that I don't contribute much. It is a balance, I guess. I also don't take pain meds unless absolutely necessary. I even managed to get off prednisone. I was only on pulse therapy twice last year, and that was when joint swelling interferred with circulation. I don't take any NSAFs either. My only lupus related meds are Imuran and Neurontin. (for neuropathic pain) You are right about each drug having side effects. The more drugs one takes, the harder it is to sort things out. BJ-Sk. Canada > Lynne, My philosophy is not to take drugs for > every ache and pain . I have taken them when necessary but then stop when [quoted text clipped - 49 lines] > > Best wishes, > > Lynne BJ-SK, Tell me more about your self I would love to hear your story, you attitude seems very like my own. Warm wishes Erina > Hi Erina, > I believe that stress and getting over tired are two of my worst enemies. I [quoted text clipped - 71 lines] > > > Best wishes, > > > Lynne Hi Erina, I think I am not as brave as most of the others here. I have trouble thinking about all of the times I have been in hospital and what it is like when I am in a bad flare. By bad, I mean life threatening, with the kind of pain that made death seem like it would be a blessing. I hope that doesn't sound melodramatic. Somehow I have to push all this back in my mind, as if thinking about it will make it happen again. My lupus presents in, what might be, a little different way. I go from day to day with the usual aches and pains. My blood work is never normal, but I am managing with just Imuran and Neurontin. My flares hit suddenly and severely, although I always have signs that herald the beginning of the down hill spiral. Flares are difficult to get under control. They take about about eight months out of my life. I lose most of my hair, a lot of weight, and become so weak that I have to be helped in and out of the bath. I have autoimmune thyroid, Raynaud's, leukopenia, immune thrombocytepenia (platelets have been as low as 6), pernicious anemia, low rbc and hematocrit. I have had three knee surgeries and had a compression fracture in the lumbar spine. I have a degenerated SI joint that causes nerve problems. My MCV/MCH remain high, in spite of my monthly B12 injections. Round macrocytes are reported by the lab as 2+, and elliptocytes at 1+. My bone marrow iron stores are markedly high, but serum iron is reported as normal. It seems odd to me that my RBC is low, but red cell is reported high at 1637.8 (norm 408.6-1389.8). I have never been able to get complete explainations for these findings. I have had vasculitis and my veins are pretty much shot now. I think that is from all the IV pred and IVIG. Would you think me crazy if I told you that I consider myself a healthy person? The doctor smiled when I said that to him. I am healthy. I just get very sick sometimes. I have learned to say no now. I do whatever I can get done in the mornings, once the stiffness eases off. I never plan anything for the afternoons, if I can avoid it. That is when I sleep or just rest. I have to accomplish something every day, or I start to feel quite useless. Well, I guess that is my story, sort of. I don't know if that is what you had in mind when asking. Hope all is well with you. BJ-Saskatchewan, Canada > BJ-SK, Tell me more about your self I would love to hear your story, you > attitude seems very like my own. [quoted text clipped - 90 lines] > > > > Best wishes, > > > > Lynne Dear GJ, I was exactly the same in saying to my Doctors "I am healthy apart from my lupus". It used to make them smile as well. You have had very severe disease, which certainly takes courage to cope with. how do you manage from day to day ? how disabled are you and do you have help at home? Warm wishes and tender hugs Erina > Hi Erina, > I think I am not as brave as most of the others here. I have trouble [quoted text clipped - 136 lines] > > > > > Best wishes, > > > > > Lynne Hi Erina, I don't consider myself at all disabled. I can do most things now, if I pace myself. I can even drive again. My husband looks after my dogs in the mornings. It takes me about an hour to get my joints loose enough to move around properly. They are very painful then. My husband saves most of his holiday time and uses it when I am sick. When that runs out he takes leave of absence from his job to stay home with me. Those times have really cut into our finances. He called on neighbours to stay with me when he had to go to the city for groceries etc. We live in the country, so that complicates things a bit. It is amazing what the body can endure, and recover from. My brain has been so fried sometimes, that I could not even form coherent sentences. My coordination was shot too. It is almost like I had to relearn everything. Each time I think I can't do it. Find the will to come back, I mean. Sure enough, it slowly happens. I think Imuran has made the difference for me. It has kept me stable for a long time. I feel very blessed. There are so many who are much worse off than I and who have been through so much more. Guess we are both "healthy". We just get very sick sometimes. <g> BJ-Sk. Canada > Dear GJ, I was exactly the same in saying to my Doctors "I am healthy apart > from my lupus". It used to make them smile as well. [quoted text clipped - 172 lines] > > > > > > Best wishes, > > > > > > Lynne As usual I like the way you put it.... healthy, just get sick a lot....... yep....... I hear you! However you have to know that for me at least, you inspire and support and it amazes me! Yes ma'am, you are blessed and you are a blessing. Leslie > Hi Erina, > I don't consider myself at all disabled. I can do most things now, if I pace [quoted text clipped - 217 lines] > > > > > > > Best wishes, > > > > > > > Lynne Hi Erina I just wanted to say thank you so much for sharing your web site ... in particular the part about your daughter/separation/fighting for custody/illness and coping in the middle of it. I can *really* relate to that. I know there's parents on the newsgroup, but it's not something that has been talked about far as I am aware. Thank you so much for putting a voice to it. On a brighter note :-) I saw you wrote "We went on trips into Perth and on a boat trip to an Island of the coast" Hey! My local town Perth, you'd be talking about our little *resort* island Rottnest Island ... I often go down to Fremantle and you can see it quite clearly on a bright day :-) Just a hop, skip and a jump away, really! ~Sal | hi all | Lupus is renowned for having bad things happen to you but life is awful how [quoted text clipped - 5 lines] | Warm wishes to all | Erina Sal , Hi you are quite right it was rotnest island. I like Australia when I was there , every one is so relaxed and friendly. it is too far too travel for me now, but I keep in touch in touch with my family there. Warm wishes Erina > Hi Erina > [quoted text clipped - 24 lines] > | Warm wishes to all > | Erina |
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