What doctors should I be seeing?

The only meds. I am on are flexeril and xanax. I see a rheumatologist in Feb. 2012. It has taken almost a year to get this appointment. I don’t even know what type of lupus I have. How can a doctor tell? I had a rash a few months ago that lasted for over 5 months and I lost most of my hair. My family doctor says that hopefully it’s only going to affect my skin. I am in pain every day and I am so stressed out. I have no family support at all. I was’nt sick before and everyone thinks I am putting all of this on. I get so tired that I can barely move. It takes me awhile to even move in the mornings. People think I’m lazy and that’s not true. Can the test they do,ANA tell what kind of lupus I have? I don’t know where to turn and this is very frustrating. The man I’m in a relationship with we always communicated but he really does’nt want to hear about any of this. I was dianosed Aug. of last year and I am at a loss. I talked to a friend I went to school with because she has lupus and she just talked about suicide. Could anyone please explain to me what they can about lupus. I read stuff on the internet and that does’nt help. This is a terrible thing to go thro alone. I take care of my mother that has heart problems and COPD. My brother past away over 5 years ago and I am his sons guardian,he has downs syndrome. I try tot ell everyone that I need to take of myself or how can I take care of anyone else. I am so drained all the time and nobody gets it. I would appreciate anything,advice,so on. Thanks, I’m new here.

Taking care of yourself is your #1 priority! Try to explain to Your family that this is a must, or you won’t be able to be there for anyone else. Remember the analogy of adults using the oxygen masks on an airplane first then taking care of youngins etc. Also try to ignore what others may say about you being lazy or just not trying. This is not easy and it takes practice, but it does no purpose but to drag you down. I don’t think they are always trying to be cruel and hurtful, it is just their ignorance and not knowing the facts about the disease that makes them talk this way. Try to give them material to read and websites are always helpful. Get rid of high maintenance relationships whether it’s family or friends. Sometimes you have to say goodbye for awhile until you are strong enough and have the tools to deal with them. Meanwhile keep up with the testing. Stay with your instincts. If you have a good doctor stay with that you trust that’s great otherwise if you are not comfortable with your doctors answers or how he treats and handles you and your situation then find another one. Good luck and God Bless.

I have lupus for over 25 years, no need for suicide,,,,get ther right doctor and the treatment...I have the sle skin problem . rashes that are severe......all over my body....



Flutterbymare said:

Taking care of yourself is your #1 priority! Try to explain to Your family that this is a must, or you won't be able to be there for anyone else. Remember the analogy of adults using the oxygen masks on an airplane first then taking care of youngins etc. Also try to ignore what others may say about you being lazy or just not trying. This is not easy and it takes practice, but it does no purpose but to drag you down. I don't think they are always trying to be cruel and hurtful, it is just their ignorance and not knowing the facts about the disease that makes them talk this way. Try to give them material to read and websites are always helpful. Get rid of high maintenance relationships whether it's family or friends. Sometimes you have to say goodbye for awhile until you are strong enough and have the tools to deal with them. Meanwhile keep up with the testing. Stay with your instincts. If you have a good doctor stay with that you trust that's great otherwise if you are not comfortable with your doctors answers or how he treats and handles you and your situation then find another one. Good luck and God Bless.

I have reading material from Lupus Alliance of America and really no family members are interested in learning anything about this disease. When i mentioned the suicide thing,that's not what I have been thinking about at all,it was a friend of mine. i thought if I talked about it with her she could be some help and we could support one another. I have'nt called her back,I mean,I have concern about how she is doing but I'm the type of person that looks to more positive things. I might be having maybe a bad day today then tomorrow could be better. I have some days where I have a lot of energy so, I have learned not to over due. My family are all so used to me being the one to take care of everything and now that I am not at everyone's beckon call it's hard for them to take. So,I made up my mind to take better care of myself. You know with some people they can call me selfish,but you have to think,who are the selfish ones. I so much appreciate everyone's comments,ty. You all take care and stay safe.

Steph, I am so glad you are getting all of these questions "out there" and I want you to know that you are not alone. We have all been called lazy when we are too tired or in too much pain to move. And you sure have your hands full.

First maybe you can click on the discussion tab at the top of the page and post a questions like: What tests will the doctor be mostly to give me to see if I have Lupus?

Maybe others, especially Ann and Unshore seem to be really good about keeping records and knowing what to ask--maybe they can help you come up with a list of questions. We will try to get a little "kit" together for your vist: a kit with 1) questions about tests, 2)a pen and paper to write notes (or a recorder if the doc doesn't mind) and 3) (Last but most important) a way to push an emergency relax button--we all have one and most of us (ME!) forget to push it when we need it most. I will post a blog in a little while about the emergency RELAX button: how to find it, when to push it.

And here is a big hug ((((((((((steph))))))))) you are gonna be ok. an entire army of howling butterflies are saying, "We got cha back, sista!"

In addition to the picture book, it might be a good idea to have a logbook of how you feel/look every day. iuse a stick figure of myself to show where i have pain and rate the intensity. over a period of time it shows patterns. if you look on my website journalingcompanion.webs.com you will find lots of journaling worksheets that are free to copy and use.

also, print out a copy of your patient bill of rights and read it till you believe it. if you are anything like me I grew up thinking doctors are superior to me a lowly patient, so i was afraid to ask questions ans speak my min like an equal citizen. it might help psych you up to know your rights.

and take a recorder (if doc allows) and a notebook so you can ask questions, write down the names of tests ordered etc. my doc lets me record bc I told him what a horrible time i was having with confusion and forgetting things...that way i can listen to it when i get home and when i am feeling calmer---going to doc stresses me out.

also, know that you may not be able to get once answer for all the problems because there is not really one treatment for Lupus all by itself. With Lupus we have to be treated for the specific problems caused by Lupus---so if it's asthma, the treatment for asthma may not have anything to do with the tx you get for inflammation in the GI. Lupus may be the underlying trouble maker, but the trouble has to be dealt with on its own (usually)

and (very important) look into the possibility that foods you are eating may be making your lupus worse. I never would have believed that food could make such a difference, but my doc told me to stop eating gluten and dairy and when I did, I went fro using a walker to being able to walk without one. it made a huge difference and i wished I'd known that from the beginning.

i know this is a lot of info to take in...so let's let it settle. please ask questions if you need to. we really care---it hurts us (older people) to see you younger ones suffer--we want to help.

http://www.everydayhealth.com/lupus/lupus-treatment-team.aspx

maybe this will help

Thank you so much for all the info. I read some where that stress can make things worse,so I have been trying to deal with not letting so many things upset me. I have always been the one in the family to try to fix everything and now I see things differently. My heath and well-being have to come first now. I’m so glad I found this site and thank you for being a friend. Take care and God bless.

janice said:

In addition to the picture book, it might be a good idea to have a logbook of how you feel/look every day. iuse a stick figure of myself to show where i have pain and rate the intensity. over a period of time it shows patterns. if you look on my website journalingcompanion.webs.com you will find lots of journaling worksheets that are free to copy and use.

also, print out a copy of your patient bill of rights and read it till you believe it. if you are anything like me I grew up thinking doctors are superior to me a lowly patient, so i was afraid to ask questions ans speak my min like an equal citizen. it might help psych you up to know your rights.

and take a recorder (if doc allows) and a notebook so you can ask questions, write down the names of tests ordered etc. my doc lets me record bc I told him what a horrible time i was having with confusion and forgetting things...that way i can listen to it when i get home and when i am feeling calmer---going to doc stresses me out.

also, know that you may not be able to get once answer for all the problems because there is not really one treatment for Lupus all by itself. With Lupus we have to be treated for the specific problems caused by Lupus---so if it's asthma, the treatment for asthma may not have anything to do with the tx you get for inflammation in the GI. Lupus may be the underlying trouble maker, but the trouble has to be dealt with on its own (usually)

and (very important) look into the possibility that foods you are eating may be making your lupus worse. I never would have believed that food could make such a difference, but my doc told me to stop eating gluten and dairy and when I did, I went fro using a walker to being able to walk without one. it made a huge difference and i wished I'd known that from the beginning.

i know this is a lot of info to take in...so let's let it settle. please ask questions if you need to. we really care---it hurts us (older people) to see you younger ones suffer--we want to help.

stress really does make it worse---i am still amazed by how MUCH Worse it makes it.

I am glad you are getting to know your way around Lupus (what a wily beast it it!) and I'm glad you are getting to know your way around here too.

hugs