Lupis is an autoimmune disease as is psorisis. The meds you were taking for the psorisis may have been helping all along with the Lupis. I have Ehler's Danlos which is also a connective tissue disease that can really affect your joints and heart and I have asthma. I am actually in better shape than I have been in my life and I am 45. The key is taking care of yourself and having a positive attitude is really, really important. Make your Doctor get you as much info as possible on this disease and take your vitamins.
I am having a lupus "pitty party". Do ya wanna come?
- Thread starter VT-Chicklit
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VT-Chicklit
Lovin' The Homestead
Thank you all for comming to my "party". Today was a new day and I am feeling better about my diagnosis. I have been able to do some reasearch on line. I find that knowledge is comforting when you are faceing something that may be scarry. I do not know what type or types of lupis I have. I am assuming that they will do testing when I go to the new specialist in September. I guess I may have over reacted yesterday when I got the news because of my ignorance and past experiences with some of the doctors in my area.
I do not have a regular general practicioner and have been going to a clinic in the next town over. The clinic has no doctor, but has 2 nurse practicioners. This is ironic because I, unlike many people, have good health insurance so the cost is not the issue. The problem is that there are few GP doctors within 45 minutes or so of where I live. Of the ones that are here, some are not taking new patients. Others have a 6 month wait to get in for your first appointment and some are terrible! My last Dr closed his practice with one months notice to his patients to go work directly for the hospital in that town. He had not been my Dr for too long but I did like him. The Dr that I had before him was terrible. He was condesending and I think he believed I was a hypochondriac. Many of the symptoms that I was going to him about, I now know are symptoms of lupis. He was my Dr for several years and I never got relief from the odd symptoms that I was having. These experiences led me to dread dealing with a new Dr, even if it is one that was recomended by my Dermatologist, who I love.
One of the things that I found out by researching lupis is that I need to destress. I tend to be stress riddled over the last 10 or so years and I need to make a concerted effort to learn to roll with things instead of worrying about what may happen. I guess I will need to stop watching the nightly cable news.
I want to thank you all for your words of support.
I do not have a regular general practicioner and have been going to a clinic in the next town over. The clinic has no doctor, but has 2 nurse practicioners. This is ironic because I, unlike many people, have good health insurance so the cost is not the issue. The problem is that there are few GP doctors within 45 minutes or so of where I live. Of the ones that are here, some are not taking new patients. Others have a 6 month wait to get in for your first appointment and some are terrible! My last Dr closed his practice with one months notice to his patients to go work directly for the hospital in that town. He had not been my Dr for too long but I did like him. The Dr that I had before him was terrible. He was condesending and I think he believed I was a hypochondriac. Many of the symptoms that I was going to him about, I now know are symptoms of lupis. He was my Dr for several years and I never got relief from the odd symptoms that I was having. These experiences led me to dread dealing with a new Dr, even if it is one that was recomended by my Dermatologist, who I love.
One of the things that I found out by researching lupis is that I need to destress. I tend to be stress riddled over the last 10 or so years and I need to make a concerted effort to learn to roll with things instead of worrying about what may happen. I guess I will need to stop watching the nightly cable news.
I want to thank you all for your words of support.
miss_thenorth
Frugal Homesteader
It took over 10 years for the dr.s to figure out what was wrong with me. I had seen so many specialists, saw shrinks, b/c they thought it was all in my head (you know--of course I;m making it all up b.c they can't find anything )
I had a few symptoms even when I was young--like 14. One Dr thought it was autoimmune, so he set me to a specialist, where that Dr basically got mad at me for wasting his time. Years later, a whole bunch of other bizarre symptoms started showing up. It was basically when I got the arthritis and Raynauds, that we finally got the correct Drs and the correct diagnosis.
GEtting the diagnosis , for me, came as a relief. I finally KNEW it was not all in my head. I have proper health care now, have eliminated most stressors from my life, and I take it one day at a time. Some days I have to move slower than others, but my theory is tomorrow is another day, and the projects will still be there tomorrow. Key for me is to feed the machine with healthy foods, keep the stress low, and enjoy every day that you have. and pace yourself, b/c doing too much work is a stressor in itself, which brings on flare ups.
Start now before you see the Dr by writing down questions that you have, and write down every symptom you experience--they will decipher whether it is related, and might help with diagnosis and treatment.
For the next while, your emotions will be on a roller coaster, as you come to accept it, but it might just come as a relief to you too.
) I had a few symptoms even when I was young--like 14. One Dr thought it was autoimmune, so he set me to a specialist, where that Dr basically got mad at me for wasting his time. Years later, a whole bunch of other bizarre symptoms started showing up. It was basically when I got the arthritis and Raynauds, that we finally got the correct Drs and the correct diagnosis.
GEtting the diagnosis , for me, came as a relief. I finally KNEW it was not all in my head. I have proper health care now, have eliminated most stressors from my life, and I take it one day at a time. Some days I have to move slower than others, but my theory is tomorrow is another day, and the projects will still be there tomorrow. Key for me is to feed the machine with healthy foods, keep the stress low, and enjoy every day that you have. and pace yourself, b/c doing too much work is a stressor in itself, which brings on flare ups.
Start now before you see the Dr by writing down questions that you have, and write down every symptom you experience--they will decipher whether it is related, and might help with diagnosis and treatment.
For the next while, your emotions will be on a roller coaster, as you come to accept it, but it might just come as a relief to you too.
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VT-Chicklit
Lovin' The Homestead
I know what you mean when you said that getting the diagnosis was a relief, miss_thenorth . When I went on line and saw that many of the symptoms for lupis were things that I had been complaining about to one Dr or another for several years, at least, I felt a relief toknow that the things I had been feeling were not in my head like some Dr's thought.
I also am starting to write down how I feel each day and annotate any thing that is not "normal". I am also going to try and get the clinic to give a copy of my medical records. These records have followed me from one Dr to another over the past 6 years, and they are now in the posession of the clinic. I will tell them that I will pay to have them copied. I hope that they will let me have them. The records should show when I went to the Dr complaining about one symptom or another. The symptoms never occured in groups, only one or two at a time.
Wish me luck on getting my records, I think I will need it!
I also am starting to write down how I feel each day and annotate any thing that is not "normal". I am also going to try and get the clinic to give a copy of my medical records. These records have followed me from one Dr to another over the past 6 years, and they are now in the posession of the clinic. I will tell them that I will pay to have them copied. I hope that they will let me have them. The records should show when I went to the Dr complaining about one symptom or another. The symptoms never occured in groups, only one or two at a time.
Wish me luck on getting my records, I think I will need it!
Miss_The North, that is the best advice ever. Legally they have to give you all of your files. I'm a nurse and we have had people want files. They usually have to notify their legal dept but they are required to give them up. It is your stuff.
