View Full Version : Lonely Newbie
05-19-2009, 04:42 PM
Let me start by saying, i'm so glad I found this website. I'm not a stranger with Lupus. I have had Lupus for 23 years now. Was diagnoised back in 1986 during my Junior year in High school. I have been through two rounds of chemotherapy twice of cytoxan (each round was 3 years long). I have gone through some years of remission here and there. Currently my Lupus is active again and has brought on new symptons I have never had to deal with. Depression and anxiety, with always feeling a lot more fatigue than I can remember. Breathing is now always a struggle, even just walking. Again the Lupus has targeted my Kidneys and now I'm trying to control all the water retention in my legs. It makes it so hard to exercise and now have gained weight over the past year. On top of it all, I was diagnosed with "sleep apnea". I have started seeing a therapist, but it's just not same. I need to talk with others who really knows/understands/feels how Lupus makes things difficult. I live in Denver, Colorado and am currently looking for a support group as well
Thanks for listening
05-19-2009, 04:48 PM
Welcome to the site. You will find answers and comfort here. Just say what you are feeling or whatever is on your mind and you will find responses of understanding and input. I was diagnosed Nov. 2008. Finally have relief from pain but still dealing with the depression and feelings of aloneness or I isolate myself. I too am seeing a therapist as it is all so hard to deal with sometimes. I have good days and bad days and we won't even go there with the mood swings, depression, and fatigue. I have been tired all day long. I am here if you ever want to talk and vent. Welcome again!
05-19-2009, 04:58 PM
So sorry you are struggling. We all understand how difficult this can be. This is a wonderful support forum. Look around, stay around. There is always a kind word, a laugh, a cyber hug, a friend.
Wishing you well,
05-19-2009, 05:10 PM
Man you have had a rough go. I wish you the best! Been diagnosed for just over a year, spent about 5 years in the testing process,(yes you have lupus,no you don't have lupus) until I ended up in the hospital last year, then YES YOU HAVE LUPUS, great I thought, at least now I can get some treatment and take care of this. Things went well for the most part up until about a month ago when the meds stopped working. Now I am short term dissability and some new meds. Shoot me a line any time. Best of luck!
05-19-2009, 06:18 PM
you have really dealt with a lot over the past 23 years. I am so sorry that lupus has returned with such a vengence. Mine did the same thing, i was in remission for about 15 years, since then has returned so strong, and i continue to struggle with everything.
i am glad you found this group. We have several guys in the group and i know they will be around soon to welcome you. Make yourself at home, and join in anytime you want....we all learn from and support each other.
Welcome to our worldwide cyber circle of friends.
05-19-2009, 07:41 PM
Hugs, welcome to WHL....we are glad you found us, always here at your finger tips. Share... we will listen, suggest, understand.
Currently, I can't recall if anyone is from Colorado. I am in S.C. Check out the Support Group forum, maybe someone might be local...
Have you check this site out...Colorado Lupus Foundation for in person support group. Follow the yellow brick road... http://www.lupuscolorado.org/about.htm
05-20-2009, 07:13 PM
I'm so glad that you found us and that you decided to join our family here. This is the right place to be amongst people who know/understand/feel how Lupus truly affects every single aspect of our lives!!
The relapse/remission syndrome alone is enough to make one fall into a bit of despair, so please know that you are not alone. Sleep apnea seems to be more and more prominent with Lupus patients. In fact, there are quite of few members of our family here who also suffer from sleep apnea. I am going to have to do some research in order to find out why this is occurring so often with Lupus patients.
Have your doctors checked your lungs? Pulmonary Hypertension is also a frequent symptom found amongst Lupus patients. Lupus causes inflammation in every part of our bodies (tissues, organs, muscles, etc.). Pulmonary Hypertension is inflammation in the sac surrounding the lungs. One of the symptoms of this condition is difficulty breathing and/or pain upon taking deep breaths.
There is also a condition that is inflammation around the heart, this is called Pericarditis and it too can cause difficulty in breathing, as well as pain.
I am not saying that you have either of these conditions, but I would suggest that you speak to your doctor about your difficulty breathing as it could be a sign of something serious!
Everyone here is very understanding, informative, supportive and wants only to help you in any way that we can. I am glad that you are here and I hope that we can be of help to you.
Peace and Blessings
05-21-2009, 12:30 AM
Hello Tommy and welcome to WHL. I hope that you are able to find the support that you are needing here. Everyone here is very caring and understanding. I hope you continue to share your story with us. ~Angie
05-21-2009, 04:54 PM
Sounds like we have similar stories. My Lupus started back around 1989, but it took 5 years for them to decide what I was dealing with. That is, until things got so severe that it took my kidneys down. A round of Cytoxan and heavy round of prednisone later and I was in a remission. They didn't know I had lupus then, thought I had "vasculitis". Never could figure out what type though. So, when I flared later, they were not sure what to do. Another so-so dose of Cytoxan and low dose of prednisone. Another shot at my kidneys prompted them to do that. Later I would flare again and a Rheumatologist ordered tests and bang, I had "Lupus". Made more sense. Put me on Plaquenil and a shot of Imuran and I started feeling better. Prompted a 2 year remission that was awesome. However last June I started to flare back up. Rheumatologist is unsure of what to do because kidney's have been very stable. Still dealing with it.
So, long story short, I'm there for you my friend. Write to me anytime you'd like. I'd love to learn more about you and exchange ideas of what worked, what didn't. I feel lonely some times as well. The group here has been so awesome to have. I hope they bring the support and comfort for you as they have for me.
Brothers in Lupus,
PS: Another coincidence to your story, is that I too have been diagnosed with sleep apnea. As if I needed that too. So, dealing with that the last three months!!
05-22-2009, 04:53 AM
Oh my heart goes out to you.We are all for you...write to us all anytime.We will try and help you through this.
gentle hugs n love
05-22-2009, 08:19 AM
Thank you Everyone for the replies and encouragement. You all put a smile on my face when I read eveyones replies. Even though I don't know you all personally, I feel we all have a connection of total understanding for each other. Please if you all need any advice, encouragement, a friend, I'm here. I know we all have to bare the cross in our lives, but we don't have to do it alone.
05-22-2009, 08:59 AM
Thank you for the warm welcome. After reading eveyones welcome, I started to feel good again, not so alone for once.
05-22-2009, 09:36 AM
You are absolutely right Lonewolf. We are here for each other to make sure that each and every one of us knows that we are not alone!! I am so happy that you are here with us.
Peace and Blessings
05-22-2009, 12:39 PM
Oh im so glad you smiled..xxxxx