Confused in NYC!

[JazzGirl]

Hello All:

I am a twenty-nine year old female living in New York City. I just received a positive ANA test result and was told to go and see a rheumatologist by my neurologist because I may have Lupus. I had a stroke in March. I am now having migraines accompanied by a strange tingling sensation on my face and limbs. I also get low grade fevers. I get very cold sometimes and simply cannot get warm for hours at a time. I have had a strange bumpy red rash on my cheeks in the past but not across the bridge of my nose. I have been battling fatigue since I was a teen. It has gotten so bad over the past year before my stroke that I had to stop working. I have had both pleurisy and peracarditis in my early twenties. I also have body aches especially in my arms and legs and back. I also have a history of miscarriages. I am African American and my uncle has Lupus. Does anyone have any advice?

It would be nice to put a name to years of strange ailments and suffering. On the other hand the word chronic is a scary thing to hear about any illness. I have felt isolated and insane for so many years now it seems strange to have a Dr. say that they may actually know what it is that is wrong with me. For years my friends and family would tell me that I was just depressed. They have taken me more seriously since I had my stroke (a sign that something more must be going on). I used to think that I should just be able to will myself to feel better. I sometimes still feel as if it is all in my head. Does anyone else feel this way?

How did you feel when someone first mentioned the word Lupus to you? Were you scared too? I don't want to have flares! I don't want to feel as if I cannot wake up anymore! I want to be able to leave my apartment and go hang out with my friends. I don't want to look at other people and wonder how they can go to work and go out after work and still have energy to spare. I don't want my body to hurt anymore! I don't want to have a headache every day! I want to have something that can be fixed easily!

I don't mean to whine. I know that everyone has problems. Many people are worse off than I am. I just want to feel better. I thank you for your time! style_emoticons/<#EMO_DIR#>/Thanx.gif

[Joandublin]

Hi Jazz style_emoticons/<#EMO_DIR#>/shakehands.gif

...and welcome to the site. Very glad you found us.

Do you have your appointment set up with your rheumatologist yet? A positive ANA in and of itself does not mean Lupus but putting it together with your symptoms and possible subsequent other blood results it may well be that is what you have.

Im really sorry about your stroke. How are you recovering? It must be very hard to deal with all of this at such a young age style_emoticons/<#EMO_DIR#>/hugbetter.gif

I understand how scared you must feel but you should know that although Lupus is a chronic lifelong illness (at the moment!) it is experienced very differently by each individual. There are many, many people out there in the world who have Lupus, are receiving treatment and have very little difficulties with it. They are far too busy getting on with their lives to post on a site like this. The majority of people here are either, like yourself, not yet diagnosed and seeking answers or have developed more serious complications from Lupus.

The most important thing right now is to find out what is going on so that you can begin appropriate treatments. There are excellent treatments nowadays for Lupus and many people have gone into remission (symptom free) as a result of treatments - others (like myself) find that their life is 100 times more manageable than it was before they received treatment.

There is no doubt that having Lupus forces one to re-evaluate a lot of things about their lives. For my own part I know that I need to rest when I can as otherwise I will suffer for it. I still work full time and have a six year old to look after so I'm not doing too bad!

Dont feel like you are whining. You have suffered long enough and it is time to get the answers. I am just worried about how long it will be before you see a Rheumatologist? In the meantime can your doctor help with pain medication for you?

Have a look at the diagnostic criteria for Lupus on this site and the blood tests that should be carried out. Make sure that your rheumy does a full Lupus panel.

Anyway, welcome again to the site. Looking forward to getting to know you.

Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Jazz, welcome to you and welcome to this site. I am sorry that
you are feeling so bad. In the first place, yes, a Rheumatologist is the kind
of dr. that you need. And, there is no one blood test that can say, "yes "
you do have lupus, or "no " you don't have lupus. The blood tests are just
used as a guide to tell the dr. in which direction to go. The most important
things to tell you dr. when you get there are all your symptoms, and
include any family member that has any kind of autoimmune disease.
Write down what symptom, when it was, how it felt, how long it lasted, where
on your body it was, just like you wrote us. Make a copy of yopur notes to
give to the dr. to put in your file, and you keep the origional to add on to.
Make sure that you have paper and pen to write down any question or
answer that yopu have, cuz you will forget b/4 you make it to your car.
Any more questions, just come here to ask. We are here for you.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[JazzGirl]

I want to thank you so much for responding to my posting. style_emoticons/<#EMO_DIR#>/Thanx.gif I can't say how much it means to me to have a place to talk about how I am feeling. I have one more very important question. How do you deal with your guilt about how your illness affects your loved ones?

I feel terrible for my husband. style_emoticons/<#EMO_DIR#>/crying.gif He has been amazing but I know that this all must be very frustrating for him. He works full time, does extra freelance jobs, and runs almost all of the errands. He is always there when I have to go to the hospital in the middle of the night and he will still get up and go to work the next day without so much as a complaint. He will rub my back or feet when my body is aching and be understanding on the days that I just can't stand to be touched because I hurt too much. I am very lucky to have such a great guy. I just feel bad that he got stuck with a broken wife. I know that this is not what he signed up for when he married me. I think that we both imagined living our very busy NYC lives having two fantastic careers (and incomes), planning on having a baby soon (Which I was just told we should not plan to do since I am prone to clot and have strokes) and living our normal lives. When I am well I try to do things to let him know how much I love him (make special dinners, run small errands, cleaning, etc.) but I just feel like it is not enough. On days like today when I am in a lot of pain and am a grump I tend to snap at him. He just asked me if a friend of his could come over and I said no. I feel terrible I just don't want to see anyone. He asked if he could go over there and I pouted. I am alone all week long and my friends are busy and I have been pretty sick for over a year so I am alone a great deal of the time. I would say that I spend about 89% - 95% of my time with my dogs. I want my husband to be happy! I want him to be able to have a life! Am I being greedy by staying married to him? Doesn't he deserve to have fun and be with his friends and have children one day? Did anyone else feel this way too? Thank you for your time! style_emoticons/<#EMO_DIR#>/foryou.gif

-Liza

[Joandublin]

Hi Liza style_emoticons/<#EMO_DIR#>/hugbetter.gif

Try not to be too hard on yourself. I know its easier said than done. Just for a moment think about if the shoe was on the other foot? How would you feel about your husband?Would it change how much you loved him? I bet not.

Of course it is frustrating for him. Its frustrating for you as well. You are going through a rough patch healthwise. This is not your fault. You WILL get answers soon and when you start treatment you will feel a whole lot better.

Do you talk to him about your guilty feelings? Would it help to talk to a counsellor or for both of you to see someone? I know these are all big steps that you need to think about. My husband died a long time ago so I dont have direct experience of sharing my illness with a life partner but I know many members here who can support you and share their experiences. If you dont get a lot of replies on this forum, post the question again on Relationships and Lupus. Some members might miss your post because it is in the Introduce Yourself Forum.

In the meantime just know that many people here understand exactly how you feel...

Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[Clare.T]

Welcome to the forum JazzGirl

style_emoticons/<#EMO_DIR#>/flowers.gif

I'd just like to comment on one aspect of your post - it sounds very much as if you could have a condition called anti phospholipid syndrome. This is an autoimmune clotting condition that can cause numerous problems like stroke and miscarriages. It quite often goes along with lupus and the test results can be a criterion for a lupus diagnosis.

Everybody's different and I don't know if you have seen any lupus specialists yet or if you are on any medications for the clotting disorder but these days, generally speaking, a successful pregnancy is very possible. But it is true that there are some circumstances in which lupus and or APS has affected people in ways that would make pregnancy highly ill advised.

All the best - try not to guilt yourself because it gets nobody anywhere. Yes it needs to be dealt with and I hope you can have a good chat to clear the air on that issue and then let it go, with an understanding reached about it. It is very hard to handle other people's guilt, with the best will in the world.

You are in one of the best places in the world for lupus and aps treatment so long as a person has the means to access them of course. Many of the leading specialists take insurances - there's Dr Lockshin and his team at the Hospital for Special Surgery, Dr Jill Buyon at the Hospital for Joint Diseases, to name but a couple.

I am sure you will find the greatest support and advice here - it is an enormous relief and great therapeutic benefit to meet people with very similar experiences and to realise that you are not alone.

All the best

Clare

[lilikeke]

Hi jazz,

My name is Alicia and Im from Houston TX. Im 27 and Ive had Lupus for a little over a year. When I was first told I might have Lupus I had no idea what that was, and yes I was very scared. But on the other hand I was glad to know what was causing all the pain, and the pain was extreme, and fatigue. Its better to have a diagnosis then u can start treating the illness. I figure ok I'm gonna have lupus for the rest of my life, of course I dont want it, no one does, but there's no changing that. So I might as well live my life the best I can, try to be the happiest I can, surround myself with people who love and care about me, and I will be ok. I am not in very much pain now, my knees bother me the most, but over all I'm ok. I know it is hard to come to terms with but I believe being positive makes it easier to live with and causes less stress which can make the symptoms worse. Yes I wanna party with friends and when I feel ok, I do, Im just not able to do it as often as I would like, but hey once a month is better than never huh? Oh yes and the guilt about my parents being affected. I just look at it this way, they love me, I love them, if they had a chronic illness I would help them however they needed, thats what family is for. I'm sure your husband loves you and when he married u it was for better or worse right, well this is worse and he is still there right? Well U are not gonna be like this forever, so if he loves u he will hang in there and trust me he sounds like he loves u. This is also a good time to find out who your real friends are, I sure have. But if someone loves you they dont mind helping you through this illness. Look this is what I have learned since I been sick, rest often, dont overdo it, if u do u will hurt, believe me i know and take ur meds regularly, and keep all dr appts and u will get thru it. I hope this helped. Sorry its so long, I just want to help u feel better.


Love,
Alicia

[JazzGirl]

Thank you all so much for all of your advice and your support! I cannot explain how much it means to me to have a place to share my thoughts and feelings. Thank you once again!

Much Love,
Liza style_emoticons/<#EMO_DIR#>/Thanx.gif