HealingWell
Search Close Search
☰

Just diagnosed

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/15/2007 3:07 PM (GMT 0)
I was officially diagnosed with Lupus a week ago. Symptoms have been going on for most of the year, minor stuff like aches and pains that I chalked up to getting older. Even though I worked out 3x a week, walked 3 miles a day and was incredibly disciplined at nutrition, lupus seemed to hit me fast. Raynaud's and now I feel like I can hardly move or even breathe. there's a pain in my back at bottom of rib cage that hurts when I take a breath. Can anyone relate to this? I've been through many major crises in my life since childhood. Always strong, overcomer. But today I just want to give up and say "Why fight anymore?" I'm so tired. I'm 55, kids are grown, grandkids are growing fast. I did my time, paid my dues and all with courage, strength and a smile. I don't feel like doing this game. Is there someone who feels this way? Or am I just having a pity party?
Posted 9/15/2007 3:31 PM (GMT 0)
Hi editor and welcome. I'm so sorry to hear about your lupus diagnosis and how sick you have gotten. All of this is so hard to take in and deal with. First of all, you are not having a pity party - the loss and the sadness you are going through are very real. The emotional pain of lupus can be even harder than the physical pain at times and that's why this forum can be such a lifeline because when you come here you are among people who truly understand what it is like to live with this illness. Lupus changes your life so much that I think most of us go through a lot of grieving, especially greiving things we can't do anymore and grief over the loss of our old and healthy lives. You are not alone in this at all. I think almost all of us have felt the way you have at one time or another. Like you, I used to be really active. I was into running and weight lifting and good fitness and nutrition. Now it's hard for me to just walk around the grocery store while grocery shopping. Needless to say, the decrease in activity along with some of the meds I take, did a real job on my body and I don't at all resemble who I was pre-lupus. It was like the life I had before lupus was shattered into a million pieces and I had to figure out who I was all over again and try to find new things I enjoyed. It hasn't been easy and there are times I still get down about all of this, but I have been able to find some things I enjoy and I am slowly finding some meaning in all of this. A lot of people with lupus can benefit from antidepressants. All the pain and illness can be hard to cope with and this disease can also decrease the "feel good" chemicals in the brain. Some people find that anti depressants help some with the fatigue and pain too. It would be worth talking to your doc about if you aren't taking anything yet. Just know that you are not alone and that all the feelings you are having are very normal. I had such a hard time for a while that I saw a therapist who knew a lot about chronic illness and it helped a lot. I am glad you joined us - we are a very caring and supportive group. Please feel free to ask any questions or vent or talk about your feelings at any time. We are here for you. Take care
Posted 9/15/2007 5:15 PM (GMT 0)
Editor,

I also want to welcome you to the forum! While I was reading Hippi's reply to your post, I identified with everything she said. When I read your post, it could have been written by me three years ago.

I'm 58 and have had lupus symptoms for years, but three years ago it hit me as though I had crashed into a brick wall. I was diagnosed and put on meds, including high doses of prednisone, and that's another story. The meds can wreck havock on your body. My kids are all grown and I as well have overcome some pretty rough bumps along the way, including a couple of malignancies, deaths, and the things that happen to us when we're lucky enough to live to middle age. It has taken me until recently to really accept the disease and my current limitations. I think you'll understand, but right now I'm not feeling too well and am too tired to write too much, but I wanted you to know that you're not alone. One of the things that has helped me reach a sense of peace with my lupus has been this forum. It has absolutely been a lifesaver and what I describe as my new family.

I'm glad you've joined us and hope you'll become a part of this wonderful group of people who will be there for you and help you along the way. You may find that there's also a lot of healing in being able to give back a little to others here who need your support. I know I have gained so much from the give and take here.

I haven't given up and know that one day I'll come out of this three year flare and be back to my old, albeit older and slower, self. It sounds like you and I have a great deal in common.

Hang in there.

Pat
Posted 9/15/2007 5:18 PM (GMT 0)
P.S. Editor, You are not having a pity party. You have good reason to resent what has happened to you and your life. I resent that I'm not as involved in my kids' lives as I want, that I don't have the energy to spend more time with my grandkids, and that I'm going to go to my son's wedding in March weighing 60 pounds more than I did a year and a half ago. Be kind to yourself and allow yourself to grieve for a while. In time you'll learn that you do have the strength to get through this. We'll be here to help along the way.
Posted 9/16/2007 2:25 AM (GMT 0)
Welcome to the forum Editor, I'll be 55 in November too!!! I was actually happy to have a dx for all the aches, pains and fatigue that I've been dragging around with me for so many years. You'll find a "new normal" in no time because you have a great attitude. It is tough when our bodies don't do what we want them to. I can really relate as I had been back packing and hiking when I had my worst flare. You'll make lots of friends here and they are a great bunch to help figure things out. Glad you found us!! Blessings!
Posted 9/16/2007 4:10 AM (GMT 0)
Hi, Editor and welcome. I think we all go through the very same feelings you're experiencing right now...and not just once. You'll make peace and then something will happen and you'll remember how it used to be and you'll find yourself here again. The great news is you've found just the place to help you through those tough times! This is an awesome group of people who understand from experience exactly what you deal with. It really is comforting to feel so understood and have a place where you can come vent if you need to, or even ask questions of people who've been there. I have recently read one of the most helpful articles that put into words how to help you cope with just what you're feeling. It came in my Healing Well Summer 2007 Newsletter. Here is the link: (I'm not sure how to instruct you as to where it might be found on this site.) www.healingwell.com/library/health/salvucci1.asp But, I loved this article and have shared it with several people in my local support group as well. Take a minute to read over it and see what you think! Feel free to come here and share anytime,
Posted 9/16/2007 4:35 PM (GMT 0)
Sharen,

I read the article you recommended. It's wonderful. I'm going to print it off and read it frequently because it made sense to me and gave me some good ideas.

Thanks!!!!!!

Pat
Posted 9/17/2007 7:16 PM (GMT 0)
Hi Editor,

I wanted to add my welcome as well. I can understand your frustrations. Its hard to take it all in in the beginning especially when you have always taken really good care of yourself. In fact that's why we do it right... to stay healthy. Most people experience stages of greivance (sp?) when they are diagnosed, and you will most likely experience all of them, not always in a particular order. As far as a pity party, that is okay and normal. But like everyone else said, its really not a pity party... you have every right to feel the way you do. I'm glad you joined us and look forward to your posts.

Take Care
✚ New Topic ✚ Reply