Whats the point!!!

So I have come on to healing well.com to seek some relation, comfort & compassion. I know I am somewhat new, but I have many time tried to help others that seem to have the same questions or needing comfort or sometimes just need to vent. This is not an easy disease, but I feel like every time I post ANYTHING, I never get feedback.  So at this point I am back to where I started before I was writing.. I feel alone..  

Hi robyn. i am sorry that you havent been getting any response. This forum seems a little quiet lately. I do read most of the messages but often don't respond. Sometimes I just dont know the answers to the questions or issues being discussed. But I hate that you feel alone and unheard. I too deal with heart issues with lupus mainly reacurring pericarditis and pleurisy every few months even on my maintenance dose of meds.

My doctor is putting me number 1 on his list for an upcoming drug trial in about a month. It may or may not help me but I am hopeful that I can participate in helping to further the research for a cure or a drug to suppress the disease. 

Keep strong and know that you are definetly not alone. Every day when I wake up I wonder how am I going to feel today and will I be able to keep up with the things I need to do. But in spite of that I am greatful that I wake up to greet another day come what may I am going to rejoice in that fact! Take care of yourself and please keep posting because we really do need each other and every one contributes in some way even though you may not see it.

I am sorry you are feeling alone and not listened to. I must point out, though, that I checked your last few posts and the ones with questions were answered, except one late last evening. Many of our members only feel well enough to come online every 3 or 4 days, so sometimes the response times are a little slow.

One thing you can do is check the "chat" feature when you are on. There are not a lot of scheduled chats, but often people will congregate in one room or another --- and it may be a gathering of people from multiple diseases. I often see where everyone is, ask if anyone has lupus, and if they do, ask them to join me in the lupus room so we can talk about lupus issues.

Unfortunately, we are at one of those lull periods where there are lots of new people asking "newbie" questions, and the long-timers seem to be taking a bit of a break...dunno what's up with the middle-timers, tho.

There is a lot of good, basic information in our welcome thread www.healingwell.com/community/default.aspx?f=29&m=184347.

I hope you feel more connected soon,

Robyn,

You have more than lupus as I do and your problems must be very complicated and overwhelming at times.  I have mixed connective tissue disease (lupus, scleroderma, and polymyositis) and had an extreme, life threatening, and complicated case.  Almost didn't make it but ivig saved my life but did not prevent the damage done to my body.  Won't go over all the different problems but the worst was loss of 40lbs of muscle from polymyositis which made me a quad and I couldn't swallow.  PT got me vertical again and I have been able to recover to the point of being active again but still have many other problems. 

Coping with such complicated and overwhelming problems is difficult to say the least.  Even with a good support system others do not fully understand what you are going through.  That is why I reached out not only to the internet but some local support groups...lupus and myositis.  Look into groups in your local area.  It does help to meet others facing the same or even worse problems and getting through them. 

After almost 6 years of coping I get weary of dealing with my problems even though my current ones are a piece of cake compared to 6 years ago.  I run a local support group for myositis and that is rewarding but also emotionally taxing.  It helps me when I talk to a newbie because it reminds me just how far I have come back and how good my life is now.  If I had known in the beginning just how much I would go through I am not sure I would have made it.  It helps to take things one day at a time or even 1 hour at a time like I did when things seemed so hopeless.  I am very lucky to have made such an unexpected recovery and continue to be well after 5 years into my recovery.

Hope you feel better soon. 

Bill

 

Hi! Robyn, and everyone,

I think I am a 'middler', and I con't to find this forum a comfort. And as we all know, some days are way worse than others. Please don't give up on us, I know I relied on the 'oldies' to share their insight and advice with me. It seems that recently, (and I think because of better recognition by drs.), more people are being diagnosed and that is a good thing, and treatments are getting better. So we are seeing more 'newbies' here. I noticed that today there are 195 pages of topics, dating back to 3/07, available on our lupus forum. I remember finding it very helpful, back when I was first diagnosed in 2005, to read old threads, and take notes about info I found pertinent to me. Maybe that would help you, too? Don't give up on us, we are truly all in this together. I am planning on feeling better.....mid August??? Many days I skim the topics and simply don't have the energy to type. I even tried to bribe my cat to type for me. (didn't work)

keep posting and hang in here with us,

suetoo