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ocgirl9
01-11-2012, 04:40 AM
Hi everyone,

I have been diagnosed with lupus since november. I am 21 years old. I suffered acute renal failure in september, and cps vasculitis. I am constantly in and out of the hospital due to the vasculitis still. I have lost over 40 pounds since september, and I still cannot keep anything down. I drink a lot of ensure, and solid foods are still not in my main diet. My ability to walk completely goes at times. My peripheral vision for now is gone at all times, and at times, my vision can be extremely limited. I live with my mom, and she helps me a lot. I was a fairly social person at college, and now I don't maintain much friendships. I have shut them off myself because it is hard for me to know what my life was before this happened and it is hard to hear my friends talk about everything they just did. I would say I lost all of myself. It has been an extremely difficult time for me. I just thought I would give this site a shot because I don't talk to anyone about it besides my mom and my doctors. Sometimes I lie to my mom and tell her I am having a good day because she cries at night in her room when she sees me struggling. I have kaiser, and I don't know if it is the kaiser doctors or in general. But, I always feel like I have no future after hearing the doctors talk. They talk to me in a way of pity? My doctor says I don't know how I am suppose to tell you can have a normal life with this severity of the disease because you can't. It feels like my doctor has no faith that I will make it and that is really depressing to hear from a professional. I hope I can find some kind of relief here.

Thank you for reading/listening.

debbie-b
01-11-2012, 05:37 AM
Hi ocgirl,

First of all, welcome to WHL.
I think it very irresponsible of your doctor to say, that you can't live a normal life.
Maybe you can, maybe you can't, but nobody knows that yet. We have many people with Lupus on this forum, who are managing to live a pretty normal life, because we are on the right meds.
If I were you, I would find a new doctor, a rheumatologist, who will care enough to find the best way to treat you and your illness.
Believe me, your life will not end, with the diagnosis of Lupus.
Are you on any meds right now?

Debbie

steve.b
01-11-2012, 06:34 AM
hi ocgirl.
i cannot think straight at the moment.
but i did want to say hi

charcross
01-11-2012, 07:37 AM
Hi and welcome! My name is Charlette and I just joined the site also. I know what u mean about shutting yourself off from your friends, I did the same thing and it's probably 1 of the worst things u can do. Next will come is isolating from family and beating the depression will be that much harder. Everyone handles this differently but be sure to tell your dr. everything,even what's going on in your mind. Maybe u can't do the same things u used but maybe some of your friends can do what ur able to do. You do have a future.

rob
01-11-2012, 08:45 AM
Hi Ocgirl,

Welcome to our group.

Just about all of us here have experienced the fear and apprehension over the loss of our former, healthy self that you are having to endure right now. Not having a "normal life" doesn't mean that you cannot have a new normal. A new normal can be as good as the old, and some parts of it can even be better. It's not easy creating a new normal, but it can be done.

Although having a doctor who has faith that you will "make it" is certainly a good thing, it's not absolutely necessary. At the end of the day, the only person who really needs to have faith that you will make it, is you. I've had many people in my life who have thought that I would not make it. I happily prove them wrong each and every day.

Anyway, there's almost always someone here to talk to. You can use the chat room to talk if there are others on at the same time. You can also leave messages and have one on one conversations using the visitor message and private message functions on yours, and other people's profile page. And of course, you can start threads and respond to other's threads whenever you like.

We're a talkative, easy-going bunch, so there's no need to be shy. Make yourself at home.

Rob

kim,l
01-11-2012, 04:18 PM
welcome oc girl to whl we are here to support you and chat when you need.

ocgirl9
01-15-2012, 04:15 AM
Hi everyone,

Sorry for the late response, I have had a rough couple of days. I wanted to say thank you for all your support and words. It feels good to know I am not alone. I have read through a lot of threads and it helps me better understand the disease. I often times don't feel fully adequate to respond because of my lack of familiarity with the disease and only being diahnoised within the last few months. I am not on any medication, I was on corticosteroids when I was in the hospital though. I am almost scared to take medication. I have never been one to take even Advil for a headache. I would not say I am
Holistic, but I worry with the long term effects of medication are. I eat a lot of anti-inflammatory food, and avoid all gluten, and beef products. I take vitamins and I have a juicer. I know this may not be the best method to treat my symptoms, but I wanted to try changing my dietary habits to see if that would make a difference before being out on medication. So far, it has not worked, and I am very much in pain. I see my neurologist doctor on Monday, and most likely think I will be re/hospitalized again. The pain in my head is horrible. I hope for th best.

I appreciate this forum very much. Even for just being a member for a short time, it has helped me feel welcome and not alone in this battle. It also has restored some
hope in my heart. I am scared, but I know I can do this.

steve.b
01-15-2012, 06:13 AM
many of us have tried different diets.

there is always pros and cons to diets.
here we do not let people push a particular diet, .... over effective medication.

most of the medication we take is desease modifying.
it has a chemical reaction with our body, and the desease.

unfortunatelly, foods cannot create this chemical reaction.....
so we need the medication.

i have lived with lupus for over 35 years.
i have tried most diets. unfortunatelly, they are not the complete answer.

sorry if i sound harsh.....
but i do not want to see anyone make the same mistake i have made or seen others make.

Desleywr
01-15-2012, 06:19 AM
I tried naturopathy, I got extremely sick and after going off the tablets and drops, it took me a month to get back to where I was before I started!

tgal
01-15-2012, 09:52 AM
Hi everyone,

Sorry for the late response, I have had a rough couple of days. I wanted to say thank you for all your support and words. It feels good to know I am not alone. I have read through a lot of threads and it helps me better understand the disease. I often times don't feel fully adequate to respond because of my lack of familiarity with the disease and only being diahnoised within the last few months. I am not on any medication, I was on corticosteroids when I was in the hospital though. I am almost scared to take medication. I have never been one to take even Advil for a headache. I would not say I am
Holistic, but I worry with the long term effects of medication are. I eat a lot of anti-inflammatory food, and avoid all gluten, and beef products. I take vitamins and I have a juicer. I know this may not be the best method to treat my symptoms, but I wanted to try changing my dietary habits to see if that would make a difference before being out on medication. So far, it has not worked, and I am very much in pain. I see my neurologist doctor on Monday, and most likely think I will be re/hospitalized again. The pain in my head is horrible. I hope for th best.

I appreciate this forum very much. Even for just being a member for a short time, it has helped me feel welcome and not alone in this battle. It also has restored some
hope in my heart. I am scared, but I know I can do this.

I am glad that you are enjoying the group and we are really glad to have you. I do have to step in here and comment about the above thread.

Let me be VERY clear to everyone reading this... There is NO diet that will cure Lupus. While I understand the fear of the medications I must warn you of the dangers of delaying the meds. None of us like them. None of us want to be on them but without them this disease can, and often will, ravage our bodies. This site was actually created in memory of someone that was tired and scared of the medication. She was young, in college and wanted a normal life. Someone told her of diets and miracle cures for this disease and she stopped her meds to be "normal". This horrible disease attacked her heart and killed her. Don't let it do that to you.

Yes, the meds have side effects but so does the disease. Anti-inflammatory foods, gluten free, no beef, only eating on the full mood etc etc will NOT fix this. You must go to the doctor and you must get on meds. Hopefully they will get your disease under control and you can go to a simple maintenance program but doing nothing but changing foods will insure that your Lupus continues to attack and you will continue to get more ill.

You are now a part of our family and we want you around here with us. Meds work and make it where this disease is no longer a death sentence. Diets, herbs and other promises found on the web only insure that you will continue to get more ill by the day.

Please think about what I said and let us know how the doctors appointment goes.

SleepyInSeattle
01-15-2012, 10:55 AM
Hi and welcome....I am also fairly newly diagnosed - I just wanted to add that I am also trying not to take a lot of meds.
BUT - I do recognize that things will probably get worse if I don't take any. I don't want to over-medicate for my problems, but I also don't want to UNDER-medicate. Both have bad consequences.

I hope you have or can find a good Rheumatologist to work with you. I am very lucky and have found one who respects my fear/ambivalence about meds, but also give it to me straight in terms of telling me when he thinks a medication is really necessary. And I respect that. He always tells me WHAT I am taking, WHY I am taking it, and what the consequences are of taking it or not taking it. Like most things in life, nothing is all good or all bad....sometimes the undesirable effects of taking meds are far better than what will happen to you if you don't. You just have to choose the lesser of two evils, so to speak.

I look at it this way - when I go out in the bitter cold, I hate having to pile on a bunch of constricting layers of warm clothing that makes me look like the Pillsbury Dough-Boy....
...but I sure wouldn't want to go out there without it.

I do a LOT of research on things that affect my life....I'm just like that. some of what I read about Lupus (and Sjogren's, Raynaud's, and APS, which I also have) scare the tweedle out of me. I understand the urge to grasp at anything that might lessen their effects, or possibly make them go away....but nothing on the internet will ever replace the care and advice of a good doctor who will listen to you, take your concerns seriously, and EXPLAIN things to you. You are young and will have to learn to live with this thing, so think of this as the start of a long relationship with an advisor...and invest in making that an honest relationship on both ends. Have conversations about the things you read or want to try, but don't go off and try them on your own, because it compromises that relationship.

It may take a while to figure out exactly what is going on in your body. Seems like autoimmune diseases reveal themselves gradually, and it can take you and your doc a long time to get things figured out. So maybe it's good that nobody is putting you on lots of meds before they understand what is going on...hopefully they will be able to tailor your care to maximize benefit while minimizing side effects and toxicity.

And remember that right now, with no meds at all, you're probably feeling the full effects of the disease. If they DO figure out a "cocktail" that works well for you (and that may take some tinkering), you might really feel quite a bit better - or at least it will hopefully stop/slow the progression of symptoms. So don't be discouraged....I'm guessing you WILL have to find a "new normal", but the way you feel right now might not be it. Give yourself and your docs some time to figure things out and adjust. It's hard and scary to wait...I have times when I WANT ANSWERS RIGHT NOW, and I feel almost claustrophobic inside all the implications of these stupid diseases and meds and so on. But I am still me. I try to arm myself with education, and develop plans for myself so I am always looking to the future. It helps.

I hope you can get some comfort from this forum, and that it will help you work with your doc and your family to adjust to this stuff. And I hope for all of us that all the promising research going on will yield something useful very soon!!!!! Never give up hope. :-)

Nihao1.
01-15-2012, 12:40 PM
Ocgirl9,
As a fellow 20 year old that likes to be social, I can understand how it can change friendships after you get very sick and need to change your activity level. I was diagnosed with lupus summer of 2010 and also ended up in the hospital for failing kidneys. After I was back home, it was tough because I just didn't have the energy levels that I used to have. It is still tough now but I am learning and figuring out how to socialize in a way that doesn't make me over tired.
I also agree, that it can be hard to be with people that knew you before you got sick, because you feel that they have certain expectations of you, as your " normal" pre-lupus sick self and that you have to be that person but you know that you can't. One thing I am trying to work one, is getting comfortable with my new self, and limitations. Most of my good friends have remained friends with me, and they know and accept(or I remind them) that I need to stay out of the sun, or that sometimes I am just not up to doing anything. My friends that knew me when I was in the hospital know about lupus, but I am still a little uncomfortable with telling people that I meet now who don't know what I have been through.
I feel that realizing that you are allowed to not see people is something that is good for us lupus patients to know.
I hope that this site will help you feel not so alone right now. If you ever want to talk let me know.




Hi everyone,

I have been diagnosed with lupus since november. I am 21 years old. I suffered acute renal failure in september, and cps vasculitis. I am constantly in and out of the hospital due to the vasculitis still. I have lost over 40 pounds since september, and I still cannot keep anything down. I drink a lot of ensure, and solid foods are still not in my main diet. My ability to walk completely goes at times. My peripheral vision for now is gone at all times, and at times, my vision can be extremely limited. I live with my mom, and she helps me a lot. I was a fairly social person at college, and now I don't maintain much friendships. I have shut them off myself because it is hard for me to know what my life was before this happened and it is hard to hear my friends talk about everything they just did. I would say I lost all of myself. It has been an extremely difficult time for me. I just thought I would give this site a shot because I don't talk to anyone about it besides my mom and my doctors. Sometimes I lie to my mom and tell her I am having a good day because she cries at night in her room when she sees me struggling. I have kaiser, and I don't know if it is the kaiser doctors or in general. But, I always feel like I have no future after hearing the doctors talk. They talk to me in a way of pity? My doctor says I don't know how I am suppose to tell you can have a normal life with this severity of the disease because you can't. It feels like my doctor has no faith that I will make it and that is really depressing to hear from a professional. I hope I can find some kind of relief here.

Thank you for reading/listening.