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    Hi,

    I have LSE Lupus. I've been sick off and on since I was ten yrs old... I'm now 32.

    It took this long to finally get diagnosed. I have found that most doctors aren't very educated on diagnosing lupus.
    I went most of my childhood and early adult life being mistaken for hypocondria by my family and the doctors knowing it was not that... but since they didn't know what it really was... they would just treat each new symptom as it arrived. And finally they quit running tests to see what was making me sick.

    I've had everything from swelling in the joints arthritis, skin rashes, pnemonia, paracarditis, to waking up with collapsed lungs from inflammation, you name it.... I've had it. It's been incredibly frustrating.

    I think when most people find out they have an illness they are probably stunned at first... and may even get depressed. I on the other hand was so sick of being sick and not knowing why... that I was (Not Happy) but releived that what was wrong with me actually had a name!

    Now when I go to the doctor I don't get the 'deer in the head light look" anymore when they see my medical history. Instead they seem to listen to me now when I tell them soemthing is going on with my body. (not all doctors but the ones who are familiar with SLE).

    I'm a very possitive person (always looking on the bright side)... and this is the first time that I've reached out for support. I'm the kind of person that thinks I have to accomplish it all... all by myself.

    However, for the first time... I'm feeling a need to have some kind of support system... I've recently moved across the country from Chicago to sunny Santa Barbara County Ca.

    I've moved away from all my family and friends because the job market was better here and I am a single mom with three daughters.

    I get up at 4 - 4:30 am... Go to work come home at 3:30pm.. help kids with home work for about two hours.. while I'm trying to clean and cook dinner... then there's the dinner mess, laundry, all of the things I'm sure you are aware of with having kids.

    I'm doing this through a pretty relentless flare up right now.

    I'm lucky if I have 1 out of 10 days that I'm not sick, fatigued in pain. Lately it's been kidneys, uti's, very fatigued, raynauds syndrom, etc... With that... I still get up and do what I have to do every day ... with out fail. In today's economy, I have no choice but to keep going... and with the demands on the schools right now.. well, that means more demands for the parents as well when the kids get home from school.

    Since I'm new to the area, I'm lacking in the "support system' area... you know the one.. the one that tells you "it will get better, hang in there"!

    Always, I've been the strong one of my family... the one who holds everything together, never giving up and never breaking down, (not even when I'm sick).

    Now it's different for some reason, I feel like I need to fall down and break apart for a little while... I haven't yet ( at least not completely)... but I feel it coming.

    Im probably "babbling" through typing right now and if so I'm sorry for that... I think what I probably need most in my life is a really good house keeper or nanny to help take some of the stress off... I feel like I'm going non-stop all of the time. But hey, let's be realistic here... what single mom can afford a nanny? I make more than most single mom's but not enough for the real luxurious life style.

    K... I'm done babbling.... Any one else out there as frustrated or worn out as I'm feeling right now? If so .. PLEASE let me know... then we can vent to each other about it.[/img]

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    Hi Michelle: :lol:
    Welcome to our forum. I think that most of us understand what you are going through...trying to hold it all together, even though you are extremely tired, always sick and even depressed. Also, we've all gone through the miriad of doctors who look at us as if we are crazy until we are finally diagnosed (I, like you, was happy to finally have a name for all of the things that I was going through!)
    I was sickest with LUPUS (and all of the other diseases that tag along with LUPUS) while I was working full-time, working on my masters degree full-time, had two young children, a home and a husband!! I look back on those days and often wonder..."What the hell was I thinking? How did I do it? WHY did I do it?"
    I guess I did it, like you, because I had a goal and I HAD to do it!
    I think that it would be an excellent idea for you to hire someone to clean your house..at least once/week. You won't believe how much stress just that one thing will relieve. Instead of obsessing about what has to be done, you can make a list for the housekeeper instead! Then, you will have a bit more time and energy for your children. But do consider this...perhaps, once in a while, hire a babysitter for the children while you lock yourself in your room and get total and complete rest!!! (I had to do both of the above many, many times throughout this disease!). I gave the babysitter strict instructions that I was not to be disturbed unless it was an emergency..to pretend that I was not at home!!
    What medications are you taking for you LUPUS, Pericarditis, Raynaud's etc.?
    I truly commend you for your strength, your outlook and for the wonderful job that you are doing as a single mother! You have much to be proud of and I think that you are a phenomenal woman!!
    Remember...you are NOT ALONE with this illness! We are here to help you and to listen to you and to give you support and comfort!
    Keep In Touch :P
    Peace and Blessings
    Saysusie

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    Thank you so much for that reply. As I read it I literally started crying.

    Those were the most encouraging thoughtful words that I've heard since I've moved away from home. Thank you so much for that.

    To answer your question about the meds that I'm taking... well, I've been refusing most of them lately and trying new things that have had possitive results.

    I was on so many medications at one point I could not even keep track of them and to be honest... I didn't feel that the majority helped me at all. I feel like my whole life has been meds and hospitals. And I decided to take charge by exploring different avenues.

    Right now I've become a vegitarian, I take cranberry suppliments... (this helps with the kidneys more than any meds I've ever taken), meditation and relaxation therapy. I don't drink pop, or eat yeast... As you probably already know.. Lupus can cause an allery to yeast and if you eat it (I'm allergic to it)... you're probably not going to feel very well for the rest of the day. Further I stay away from sweets and watch my carbs because the yeast that is already in the body feeds and grows off of it.

    I do take (some) anti inflammatories, IBprophin 600-800 mg only on days that I absolutley have to and Bextra.

    I guess I'm looking at medications like this right now... If I absolutely need it, I'll take it, but if I can work through it naturally ... then I will.

    I think too... that another reason is because when I have a few good days and am feeling good...or when I'm feeling good for a long period of time.. I know that it's not medication induced... it's that my lupus has taken a time out.

    I'm finding that since I've quit taking so many meds...I have just as many good days and just as many bad as when I was taking medication.

    Which makes me wonder of course how much consistantly taking medication really helps. (I know that the steriods have to be consistant to be safe and I think that detours me from taking them as well).

    I don't know that the semi-natural way is the best... but it does help me more than consitantly taking meds. I'm certain that everyone is different... and I am finding that lupus effects everyone different. Bottom line... I think anyone with a chronic illness should get in tune with their bodies and do what works best for them.

    Thank you again for your reply. Please keep in touch with me as well!

    Michelle

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    Michelle;
    You are ABSOLUTELY right....knowing your body is just as important as knowing this disease. Good for you for listening to your body and doing what is right FOR YOUR BODY!!!!!
    I agree, if you are able to manage your disease without a lot of medications, then you are also able to control the quality of your life. It sounds to me like your body may be on its way to remission (remission, in lupus, only means that you are managing your disease without a lot of medications...it does not mean that the disease has gone away!!).
    Some of us have to do years of medications before we can get to where you are! I truly admire you!!!
    Continue to take good care of yourself......We are here for you!
    Peace and Blessings
    Saysusie

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    Michelle

    I was wondering if when you became a vegitarian you started to feel better and your labs got better.
    I went to a "holistic" MD by request of my husband who told me to become a vegitarian with no meat protien at all. If I did't I won't live to see my children graduate high school. I talked with my Rheumatologist and she told me there has been nothing to prove that it works.
    I was just wondering your thoughts on the subject and how can I do it. It is very very hard for me.

    Thanks

    Kitty

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    Michelle

    I was wondering if when you became a vegitarian you started to feel better and your labs got better.
    I went to a "holistic" MD by request of my husband who told me to become a vegitarian with no meat protien at all. If I did't I won't live to see my children graduate high school. I talked with my Rheumatologist and she told me there has been nothing to prove that it works.
    I was just wondering your thoughts on the subject and how can I do it. It is very very hard for me.

    Thanks

    Kitty

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    Hi Kitty,

    I did start feeling better on certain levels. First I would like to say that if you have Lupus Niphritis it is recommeded to lower your protien intake. I have been having kidney problems and will be undergoing testing for nephritis very soon.

    My labs didn't really get better, but I have been able to digest my food ten times better. The fatigue isn't as bad as before because as you know - your body has to work pretty hard to digest meat.

    Does anyone out there feel that way after they eat? My belly would get bloated, I'd feel incredibly fatigued after every meal. After I stopped eating meat... both of those symptoms got better.

    If you are going to become a vegeterian I highly recommend talking to a dietition first! Becoming a vegiterian can be more harmful than good for you if you aren't sure of the foods your body needs in place of the meat.

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    Default Thank you Susie

    Susie you are very sweet. Thank you.

    I did forget to mention one thing to you that you asked about in your 1st response.

    What I take for Raynolds... A very hot shower! As often as needed. If it acts up at work, I have a heater on my desk blasting directly on me.

    Also, I wanted to ask you about nephritis. It's looking like I most likely have it.. my C3 is low, blood in the urine, swollen eyes etc...I'm going to have the testing done soon, including a scope. But what I can't find out about is the prognosis of nephritis. Also, I really want to stay away from steriods and the only treatment that I've seen that actually helps nephritis is steriods. Does anyone know of other treatments? Maybe I should see Kitty's holistic doctor. From what I've read about Nephritis I have to admit... it looks pretty scary.

    Susie, thanks again for your thoughtful and encouraging words.

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    Mmichelle - Just wanted to wish you the best of luck with everything. I have Nephritis right now. Even though I am also doing traditional western medicine (Prednisone & Cellcept - didn't really have an option), I have always seen the value in Natural medicine. I have flip=flopped between vegetarianism & limited natural meat consumption, and I feel better when I eat at least a little meat - it helps my anemia a bit, too, which helps my energy level. However, I only eat hormone-free meat & organic food.

    Anyway, I wanted to say that now that you are on the West coast, you have access to a larger number of Natural Medicine Practitioners. There are a lot of options for practitioners, and they can replace or supplement your western medicine, but it's important to be well-informed. I would suggest that you look for someone that is a Naturopthic Doctor, they usually have an ND after their name, and that has graduated from a good school of Natural Medicine. There is a great school in Seattle, Washington, called Bastyr University, and is very well -known and produces good doctors. There is a good school of Oriental Medicine in Portland, OR, too. I don't know of good schools in California, but what I did to find the right practitioner was to interview several until I found a right fit. They all gave free 15-30 minute consults for the first time. Also, it depends on what you are looking for - someone licensed in Acupunture & Chinese herbal medicine, too or just Naturopathy.

    I think it is interesting that you have done so well without steroids, etc. My Naturopath would say that indicates you could respond really well to Natural Medicine & herbs.

    Anyway, sorry for the long post, but I really wish you the best in your search for the best treatment for Nephritis.

    Missy

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    Hi Missy,

    Thank you for your reply and for your advise on finding the right doctor.

    I don't know that I've done better without the meds as someone who is on them. I was in remission but since I've been out of remission for about a year or more I feel like I have more bad days than good. However I don't have any more bad days than someone who is taking a lot of meds. I guess I feel like the medications for the most part mask symptoms with new symptoms.

    I'm sorry to hear you have nephritis. Nephritis is new to me and from what I've read about it it seems like you either have to take the steriods or medication with bad side effects or die. I have to admitt Nephritis scares me.

    Do you know what the long term prognosis is with Nephritis? I can't find any studies that report past the first five years of diagnosis.

    If you don't mind me asking what were/are your symptoms of Nephritis? Mine started with UTI's about every 6 -8 weeks. A lot of blood in the urine then Kidney pain, now I have swelling of my face hands, feet...

    I wish you the best and appreciate all of your advise.
    Please keep in touch and take care.

    Michelle

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