[mary520]

Hi all,
Just had my rhuemy visit today and although I thought I was doing pretty good, he said my lupus was "active" but stable. I guess that means that I'm not in remission like I thought. I have been having alot of GI problems and fatigue, on and off. I have also been under alot of stress, seems like nothing is going right for me, so I guess that is causing my lupus to act up.

When I got home I had an email from my friend who has melanoma and it was not good news:sad::worried:. It seems that for every step forward, it's two steps back. I am so upset that I can't even cry, I am just numb and feel like I've been kicked in the stomach. I don't know how to handle this, or what to say to him. I know that stress is bad for me but I can't seem to see anything positive ahead right now. Please keep my friend in your thoughts and say a prayer for him. Thank you all so much for being here.

Mary

 

[Clare.T]

Hello Mary

I am sorry about your friend and know how very painful it is, having lost my best and oldest friend last year after a long illness which she herself and all her friends knew was almost certainly terminal. It would certainly have been inappropriate to behave as if she was going to get better.

I focused on talking about the good times we had had together, looking at photos and reminiscing, while making sure she knew how much I valued all the aspects of her friendship. It wasn't at all morbid, in fact we often had a good laugh and it certainly helped me. We also talked regularly on the phone often about TV reality shows which she was watching far more than she used to. I sent her frequent short notes too
Other friends living nearby were in a better position than me to be of practical help but I was available to chat in the evenings, the long no visitor hours between a very early supper time in the nursing home and actually going to sleep

I will keep your friend and yourself in my prayerful thoughts.

Yes, the role of stress in flaring lupus has become well recognised in recent years. I am not sure how one copes with the stresses of loss.

I do know that it helps me to cut out all avoidable additional stressors. That might be simple things like not listening to the news and not exposing myself to anything that doesn't bring me positive benefits. Then I guess dealing as best possible with the unavoidables, not letting other things or people get to me by changing my thought patterns. There are different ways of doing this some of which sound silly, like putting all my bad thoughts, irritation and so on into a labelled box in my mind and then throwing it in the garbage. I also make an effort to find something amusing something pleasing, to learn something new each day and achieve at least one thing
It is easy to feel overwhelmed by dismal thoughts
Prozac helps too!

Did your doctor have any ideas for helping with the fatigue or the GI issues ?

Many Hugs
Clare

 

[sam101360]

Mary:

I am so sorry to hear about your "Double Whammy" of sad news. I will indeed pray for you and your friend.

I totally agree with what clare said about dealing with stressors, I do the very same things to keep myself level. I also have a "haven" in my yard, that hubby built for me...over the years it has become my assylum and I spen time there relaxing. I take my troubles and feed them to the fish in the pond there, then just sit and listen to the water flowing.

Find a place where you can let it all go...a room, a book, the beach, a park.

Just someplace where you can go, leave the stressors and then come away without them for a little while.

Stay well - Stephanie

 

[Jesse88]

Mary, I'm so sorry for what you're going through right now. I know your friend would feel awful if he knew that his current problems are stressing your own health issues. Be a friend to him (he needs you now) but first and foremost, you must take care of yourself.

 

[pollianna]

Mary it does all seem to come and once. I'm sorry your friend is so ill. It's a wonderful thing that they have a friend that they can talk to even though you are so ill yourself. You must be a friend indeed. I lost my boyfriend to cancer and he found me just being there comfort. sometimes it's all we have to offer but sometimes it's enough.

You could always tell him that your not sure what to say and ask him how he wants you to be there for him. Ask him how he feels?

Hope things turn around soon P xx

 

[lazylegs]

Hi Mary,

During this difficult time your friend will need all the support he can get. Having a friend willing to listen would really be a comfort. You might also suggest he joins a support group or an online message board so he can communicate with others that understand what he is going through.

Both of you will be in my thoughts.

Take care,
Lazylegs

 

[keebler]

Hi Mary,

I know that feeling all to well that nothing is going right for me. Just take it one day at a time.

I found out helping a friend out is being a good listener. Let him vent and feel that he can talk openly with you.

You do need to remember to look out for you too. I am sure he is worried about you. (that is what best friends are all about)

Love & Prayers,
Lyn

 

[mary520]

Thanks so much for everyone's concern. Today has been a roller coaster of emotions. The tears that wouldn't come yesterday, have been coming in ffloods today. I am trying to take things as they come and not think to far ahead because my mind won't let me go beyond what is happening right now.

I really appreciate the love and support I get here. Thanks again for letting me share my burdens.

Mary

 

[Katharine]

Hello Mary,

I am so sorry for your news. I hadn't replied before because I just wasn't very sure what to say. It is difficult to know how to deal with such things and I suppose that when they happen, we just have to deal with each day as it comes. Hopefully by doing that it can remove some of the stress.

Listening to your friend and simply being there (whether in person, down the phone, on the internet...) is very important. A very good friend of mine went through an extremely tough time last year and indeed almost died on a couple of occasions. I wasn't able to be there physically as we don't live near each other but I was there via the internet. We talked a lot. Some days she would kind of "run away" from what was happening and would talk about anything but what was going on, on others she needed to get her head around it. That "flexibility" in listening is essential. Even on the down days, although we would talk seriously, we would also both end up in fits of laughter. I think all that helped her to get through that very hard time (I hope so anyway). My main memories of that time are the laughs. Life needs to be enjoyed as much as you can, even then.

I think the suggestions to do something that friend might want to do are great depending on how much your friend can do. It can become very important to someone to be able to do such things and, again, just live life and enjoy it to the full.

Lastly, do look after yourself. I think it is normal and necessary to cry for your friend but do try not to fret about what you can't accomplish. We all have our limits and we can all feel that we haven't done enough but if, in our hearts, we gave our all, then it is often more than enough and makes a huge difference to the ones we love.

Katharine

 

[onetay]

Mary,
Often what some call remission is not remission at all. I think the thing to do is to go with how you feel. Take every good day you get and enjoy it, and well the bad days they are what they are and do what you can with them.
I will say a prayer for your friend, but you can give him support the same as you give here and we give you, just be there and listen when he needs someone to talk to. Find little things that might bring a smile or laugh to his face and send them. He to can only take one day at a time like we do. I hope you and your friend are feeling well at the moment.

 

[mary520]

Hello friends,

I'm sorry I haven't been on here much lately..been so overwhelmed with my health going down hill and the stress of seeing my friend battle cancer.

Just wanted to give you guys an update. He is going into the hospital today to have an isolated limb infusion. This is risky but it offers him the most hope. He has been thru so much but he hasn't given up. I ask you all to please keep him in your thoughts and prayers, that this treatment will be a complete sucess, and destroy all his cancer cells.

Thank you all for being here and giving me a sholder to lean on.

Take care,
Mary

 

[lazylegs]

Hi Mary,

My thoughts will be with both of you :hug:

Take care,
Lazylegs