View Full Version : I am new to lupus and need help

Chris Gawron
08-01-2008, 05:03 PM
I found out in March that I have Lupus and since then it seems I don't want to go out or do anything, I feel sad like a huge part of my life is gone. Is this normal? I feel like I have lost a friend. I also have Fibromyglia and Sjogrens. On advice from my doctor I have stopped eating wheat and gluten which has helped but when I do go out with friends I get very nervous about ordering meals inf ront of people and the 20 questions I may get. Are my feelings of loss normal?

08-02-2008, 04:24 AM
Hi Chris,

Of course it's normal. Humans grieve loss over everything. It's natural and normal...it's how we adjust and process.

It's the healthy thing to do...just dont forget the acceptance part and the adjusting to new ways of being.

My sister can not have wheat at all...and it is in alot of products you may not think of.

You should contact your local Ceiliac's society. They have several things that can help you. One of them is a grocery shopping guide. It get's updated (I'm not sure how often) so you can avoid foods that contain hidden glutens.

They also can help you locate restaurants in your area that are gluten free or friendly to people with gluten issues.

You WILL become comfortable saying in a restaurant..."do you have a gluten free menu or meals?"

My sister does...and we have found several places that we can go out to eat that are truely wonderful.

Makes her feel normal again at these places. She doesn't have to worry about what she orders. She can have what ever she see's on the menu and there are some delicious choices.

Hope this helps

Oh you can also google gluten free restaurants in your area. That's how I found some of the places we go to.

08-02-2008, 11:11 AM
Hi Chris;
Learning that we have a chronic disease that could very well be with us for the rest of our lives is quite a bit to process. It, naturally, means that our lives will have to change, sometimes completely and drastically. Again, this is a lot to process. So, what happens (as Oluwa pointed out) is that we begin to feel very sad about the loss of our health, the loss of our freedom to do anything we want and the loss of our former lifestyle. We then begin to grieve over these losses and, as is always the case when one grieves, we fall into a depressive state.
This process has happened to ALL of us and we still find that we go back into this process during those times when our disease is active and we are suffering from symptoms. That, too, is natural. So, what you are feeling and how you are reacting is quite normal.
Kubler-Ross states that their are five stages in the grieving process:
1-Denial-"this can't be happening to me", No crying. Not accepting or even acknowledging the loss.

2-Anger-"why me?", feelings of wanting to fight back or lay blame.

3-Bargaining- Attempting to make deals with God to stop or change the loss. Begging, wishing, praying for things to be the way they once were.

4-Depression-overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss of your health as well as the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.

5-Acceptance-IMPORTANT -There is a difference between resignation and acceptance!! You have to accept the loss, not just try to bear it quietly. Realization that the loss is not your fault, they you did not bring this on yourself. Finding the good that can come out of the pain of loss, finding comfort and emotional healing. To find a way, now, to make the most out of your life and to live it as healthy as you can. To do all that is necessary to avoid flare-ups and/or exacerbation of symptoms.

Joining a support group, like ours, is a big first step. You are reaching out to people who understand and who are willing to help you in any way that we can. You are never alone when you are here with us. Welcome to our family.

Peace and Blessings

08-02-2008, 03:51 PM

How ya doing?

08-03-2008, 04:29 AM
Hi Chris,
Welcome to the forum. I think that it is normal to feel the way that you do. I have to avoid glutan, wheat, oats and barley and MSG and it is hard to go out and eat. You will in time come to accept this way of life. I will have you in my prayers.


08-03-2008, 08:21 AM
Hi Chris and welcome -
Are you showing any symptoms at this time/are you in an active flare? What kind of meds are you on?
I ask this because if you are in an active flare, this can cause depression. Not only because we feel lousy - thats enough to get anyone depressed - but the flare itself can cause depression. When we start getting treated for the flare, the depression can lessen. Also, many of us are on anti-depressants...have you considered this as an option as well? There are many out there with little to no side effects that work wonders.
If you are not in a flare right now, my advice to you would be to try and enjoy life!! There are more than a million of lupus patients in the US alone who manage very well with this disease and live a normal life span. This doesnt have to define you...Yes, you may have to make some life changes - some are harder than others (like the gluten diet) - but most lupies manage to have a relatively normal life. If you are not suffering symptoms right now, try to maintain your wellness by staying out of the sun, getting a good amount of rest, and eating a healthy diet.
Now, does your doc think you have Celiac's Disease? If not, Im not sure why he would have you on this diet..It is VERY restrictive (I was put on it for 6 months and it did NOTHING for me but make me crazy). Celiac's Disease is serious, for sure, and the diet is necessary to stay well, but if you dont have that disease, I would ask your doctor why he wants you to do this. There is no correlation between eating a gluten free diet and managing lupus. A healthy diet (there are stickys above to guide you here as to what is good/bad for our disease) is necessary, but that doesnt mean "gluten-free".
Id be interested in your answers to these questions, if you are up to it of course. You have found a wonderful site here, and you are always welcome to express your fears and worries...hopefully, we can help you - if only just by listening...Again, welcome...
I hope you are feeling better soon, both emotionally and physically...
Love Lauri
PS - Dont forget - Worrying and/or stress is a MAJOR cause of flare-ups of this disease. Staying as stress-free (ha ha) as possible is very important in managing this disease...Please try not to worry...and please continue to come here to voice any concerns you may have...We are here for you