Joined
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15 Posts
ok, lets start off with..
hi! im Sabrina :innocent: and im an 18 year old female NICE TO MEET YOU ALL
hi! im Sabrina :innocent: and im an 18 year old female NICE TO MEET YOU ALL
need advice and help :[ ! very confused
1 - 7 of 7 Posts
Dear Sabrina, I have Lupus and could not cope with all you do. My 17 year old has Lupus and had to pull out of College. In my opinion you are doing way too much. It will not be possible for you to push yourself through this.
My ANA was negative for a very long time too. Your School really MUST do more for you. Do you have supportive Parents who will go into the school to discuss what help you need?
Taking time off makes you feel so unreliable, and in my Daughters case she just got too far behind to catch up. I do know how awful this can be and also very difficult to explain to your friends. I am sorry if I sound over cautious but I do not want to see you break down completely through trying to meet the School's expectations.
Best Wishes and a big Hello,
x Lola
My ANA was negative for a very long time too. Your School really MUST do more for you. Do you have supportive Parents who will go into the school to discuss what help you need?
Taking time off makes you feel so unreliable, and in my Daughters case she just got too far behind to catch up. I do know how awful this can be and also very difficult to explain to your friends. I am sorry if I sound over cautious but I do not want to see you break down completely through trying to meet the School's expectations.
Best Wishes and a big Hello,
x Lola
Hi Sabrina,
Welcome to the site.
Only you will really know if you can make it to school or not. I know how it can be to wake up in so much pain you think you can't possibly make it out of bed let along go to school. In my experience though doing the normal daily things can help block out some of the pain. Laying in bed with nothing really to occupy your mind will bring the pain to the forefront.
There is a fine line of overdoing though. Is it possible to go 1/2 days when you are feeling so poorly? When my eldest daughter was having horrific migraines the school let her go to half of her classes one day and half the next. Just going a few hours less each day made it tolerable for her.
You might also want to discuss your pain level with your physician. He might be able to give you something to help.
Take care,
Lazylegs
Welcome to the site.
Only you will really know if you can make it to school or not. I know how it can be to wake up in so much pain you think you can't possibly make it out of bed let along go to school. In my experience though doing the normal daily things can help block out some of the pain. Laying in bed with nothing really to occupy your mind will bring the pain to the forefront.
There is a fine line of overdoing though. Is it possible to go 1/2 days when you are feeling so poorly? When my eldest daughter was having horrific migraines the school let her go to half of her classes one day and half the next. Just going a few hours less each day made it tolerable for her.
You might also want to discuss your pain level with your physician. He might be able to give you something to help.
Take care,
Lazylegs
Joined
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15 Posts
LolaLola;527557 said:
THANKS LOLA!
Nice to meet you too :wavey:
yes, i do have supportive parents
it is SO difficult to explain to friends, they really don't understand when i can and can't do something and its sucky. :hissy:
thanks for your advice!
you think my school will be lenient if i have my parents talk to them? because that's a good idea!
Joined
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15 Posts
hello :shake::shake:lazylegs;527559 said:
that's also a good idea
i might have my mom discuss that with my school.
THANKS!
A warm welcome to the forum Sabrina !
Definitely approach your school and see what accommodations can be made.
It shouldn't make the slightest difference that you have not got a formal diagnosis of SLE. You should have a letter from your rheumatologist explaining your situation in easily understandable terms, mentioning how it is affecting your life and what your needs are. Rest, stress reduction and management being essential to reduce current disease activity and lessen the risk of worsening.
The SLE Foundation of NYC, the NYC version of the LFA, is extremely active and might well be able to help you present your case. They might know of similar cases.
You can also prepare a background information pack. Maybe your school has never heard of lupus or if so, they have only the vaguest notions.
The important thing is that you have been diagnosed with an autoimmune connective tissue disease and you are getting the appropriate treatment for it. The school can hardly deny that you are ill whatever it's being called!
The term 'UAS' is unusual. I have never seen it before. It isn't even in the index of the major medical lupus textbook . It appears in only one context that I can find, which is in discussing the health status of mothers who gave birth to babies with neonatal lupus. Obviously not your situation !
The question is what is the difference between your 'UAS' and what is called Undifferentiated Connective Tissue Disease, UCTD.
One proposed working definition of UCTD is;
1.There has to be inflammatory arthritis in more than one joint or Raynaud's ( cold hands& feet other extremities which turn blue red and white) or keratoconjunctivitis sicca, which basically means dry eyes and mouth.
2. There has to be positive ANA, Rheumatoid factor or anti CCP.
3. Three of the following: myalgias ( muscle pains), autoimmune rash, serositis ( " inflammation of the serous tissues of the body. The serous tissues line the lungs (pleura), heart (pericardium), and the inner lining of the abdomen (peritoneum) and organs within"), persistent fever without infection, adenopathy( large or swollen lymph nodes), elevated SED or CRP, antiphospholipid antibody.
(Source: Dr D Wallace)
I am sure that many doctors would simply diagnose "SLE" and even I have an "SLE" diagnosis simply on the basis of lupus specific skin, arthritis, ANA, another significant antibody, photosensitivity & dry eyes.
The other condition of a UCTD diagnosis is that there should be " no ACR Criteria fulfilled for diagnosis of any other rheumatic process".
In the case of SLE this presumably means none of the specifics: no anti ds DNA antibodies, no anti Sm antibodies, no lupus specific skin problems or kidney disease. Some doctors will not diagnosis SLE unless there is one of these specific criteria. If you can avoid an SLE diagnosis so much the better - it makes getting insurance very difficult and only at high premiums. It could also affect your life in other ways, even if it legally shouldn't.
The symptoms of disease have been grouped according to how often they present together and each group has been given a name to distinguish them from one another. It is not like diagnosing measles or mumps, two very different infectious diseases. It's more like citrus fruit, fruit with the same general characteristics but distinguishing individual features.
But everybody agrees that mumps is different from measles and nobody's going to quibble about when a lemon should be called an orange. Autommune connective tissue disease is very different with a huge array of possible symptoms.so the question is how to distinguish all the different possible presentations.
Doctors have different diagnosing habits, and there is often disagreement about current classification criteria. As more becomes known, including new antibodies, classification criteria can change and new "diagnoses" or names, are made up to describe sets of symptoms. Older terms fall into disuse. As examples, SCLE and APS have both been described only in the past 30+ and 20+ years. They existed of course before then but hadn't been identified described and given a name so that other doctors know what they all are talking about.
It might well be that your rheumy can tell the schoool that you have a form of lupus that involves severe joint aches, fatigue and whatever else you are suffering that could affect your school life and the demands and expectations they make on you. The exact name she has chosen to call your version of AI CTD isn't at all relevant in this context.
You should ask her about other medications that could make life easier. I dont know how long you have been on the Plaquenil which takes a few months to become fully effective. People often use NSAIDs to help with joint pains and sometimes have a short course of Prednisone to reduce inflammation fast when needed and see them through flares. If the Plaquenil isn't proving enough, then another anti malarial called Quinacrine can be added often to great effect.
Really good doctors these days are very concerned with quality of life. Nobody wants to take more medicine than they need but there are times and circumstances in life when it is especially important to get the maximum possible benefits that medicines can offer. Soldiering on is not a good idea. Even if at times this has to be done it should only be done when all other avenues have been fully explored. Your rheumatologist needs to know about your hopes and fears and how your symptoms are affecting you in practical terms.
If you think your doctor isn't addressing your concerns fully maybe you can get a second opinion. NYC has plenty of first rate lupus specialists although I realise you probably don't live in the city.
One thought worth throwing out: is there any chance of you maybe lodging with a school friend weekdays?
Please let us know how you get on - we have several youngsters here who have done extremely well despite being badly affected.
All the best
Clare
Definitely approach your school and see what accommodations can be made.
It shouldn't make the slightest difference that you have not got a formal diagnosis of SLE. You should have a letter from your rheumatologist explaining your situation in easily understandable terms, mentioning how it is affecting your life and what your needs are. Rest, stress reduction and management being essential to reduce current disease activity and lessen the risk of worsening.
The SLE Foundation of NYC, the NYC version of the LFA, is extremely active and might well be able to help you present your case. They might know of similar cases.
You can also prepare a background information pack. Maybe your school has never heard of lupus or if so, they have only the vaguest notions.
The important thing is that you have been diagnosed with an autoimmune connective tissue disease and you are getting the appropriate treatment for it. The school can hardly deny that you are ill whatever it's being called!
The term 'UAS' is unusual. I have never seen it before. It isn't even in the index of the major medical lupus textbook . It appears in only one context that I can find, which is in discussing the health status of mothers who gave birth to babies with neonatal lupus. Obviously not your situation !
The question is what is the difference between your 'UAS' and what is called Undifferentiated Connective Tissue Disease, UCTD.
One proposed working definition of UCTD is;
1.There has to be inflammatory arthritis in more than one joint or Raynaud's ( cold hands& feet other extremities which turn blue red and white) or keratoconjunctivitis sicca, which basically means dry eyes and mouth.
2. There has to be positive ANA, Rheumatoid factor or anti CCP.
3. Three of the following: myalgias ( muscle pains), autoimmune rash, serositis ( " inflammation of the serous tissues of the body. The serous tissues line the lungs (pleura), heart (pericardium), and the inner lining of the abdomen (peritoneum) and organs within"), persistent fever without infection, adenopathy( large or swollen lymph nodes), elevated SED or CRP, antiphospholipid antibody.
(Source: Dr D Wallace)
I am sure that many doctors would simply diagnose "SLE" and even I have an "SLE" diagnosis simply on the basis of lupus specific skin, arthritis, ANA, another significant antibody, photosensitivity & dry eyes.
The other condition of a UCTD diagnosis is that there should be " no ACR Criteria fulfilled for diagnosis of any other rheumatic process".
In the case of SLE this presumably means none of the specifics: no anti ds DNA antibodies, no anti Sm antibodies, no lupus specific skin problems or kidney disease. Some doctors will not diagnosis SLE unless there is one of these specific criteria. If you can avoid an SLE diagnosis so much the better - it makes getting insurance very difficult and only at high premiums. It could also affect your life in other ways, even if it legally shouldn't.
The symptoms of disease have been grouped according to how often they present together and each group has been given a name to distinguish them from one another. It is not like diagnosing measles or mumps, two very different infectious diseases. It's more like citrus fruit, fruit with the same general characteristics but distinguishing individual features.
But everybody agrees that mumps is different from measles and nobody's going to quibble about when a lemon should be called an orange. Autommune connective tissue disease is very different with a huge array of possible symptoms.so the question is how to distinguish all the different possible presentations.
Doctors have different diagnosing habits, and there is often disagreement about current classification criteria. As more becomes known, including new antibodies, classification criteria can change and new "diagnoses" or names, are made up to describe sets of symptoms. Older terms fall into disuse. As examples, SCLE and APS have both been described only in the past 30+ and 20+ years. They existed of course before then but hadn't been identified described and given a name so that other doctors know what they all are talking about.
It might well be that your rheumy can tell the schoool that you have a form of lupus that involves severe joint aches, fatigue and whatever else you are suffering that could affect your school life and the demands and expectations they make on you. The exact name she has chosen to call your version of AI CTD isn't at all relevant in this context.
You should ask her about other medications that could make life easier. I dont know how long you have been on the Plaquenil which takes a few months to become fully effective. People often use NSAIDs to help with joint pains and sometimes have a short course of Prednisone to reduce inflammation fast when needed and see them through flares. If the Plaquenil isn't proving enough, then another anti malarial called Quinacrine can be added often to great effect.
Really good doctors these days are very concerned with quality of life. Nobody wants to take more medicine than they need but there are times and circumstances in life when it is especially important to get the maximum possible benefits that medicines can offer. Soldiering on is not a good idea. Even if at times this has to be done it should only be done when all other avenues have been fully explored. Your rheumatologist needs to know about your hopes and fears and how your symptoms are affecting you in practical terms.
If you think your doctor isn't addressing your concerns fully maybe you can get a second opinion. NYC has plenty of first rate lupus specialists although I realise you probably don't live in the city.
One thought worth throwing out: is there any chance of you maybe lodging with a school friend weekdays?
Please let us know how you get on - we have several youngsters here who have done extremely well despite being badly affected.
All the best
Clare
Moshbydefault,
I would say to talk with the school and with the rheumy to see if they can work together for you. You might see if they would offer some things online for you or can email work to you on days you just can't make the trip. Let them know that you will be there when you can and plan to go to college. You do have a dx of a immune disease already. I know in the states they offer something called an alternative school for kids, you might see if that is available for you if they can't work things out for you. I wish you the best of luck for a workable solution to your very painful problem.
Tammy
I would say to talk with the school and with the rheumy to see if they can work together for you. You might see if they would offer some things online for you or can email work to you on days you just can't make the trip. Let them know that you will be there when you can and plan to go to college. You do have a dx of a immune disease already. I know in the states they offer something called an alternative school for kids, you might see if that is available for you if they can't work things out for you. I wish you the best of luck for a workable solution to your very painful problem.
Tammy
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