My friend w/lupus is driving me crazy! Any words of wisdom?

[Puffy2]

Ok, I'm just venting here. Any words of wisdom or encouragement appreciated. This is about my friend that I take to disney once a year.

My friend who has been diagnoised with lupus for about 7 years is rather difficult to get along with at times. I love her to death and I think I go WAY beyond the call of duty in the understanding dept. I am her best friend, I've known her for almost 15 years and "I'm stuck with her" because I can't imagine not having her in my life, but I find it difficult to manage the emotional ups and downs I have to endure to stay close.

When she has a "flare" (which can last two months, three...) she completely shuts down. Won't take calls, won't go out, no communication what so ever. I don't live close to her so it's not like I can "pop in" (an hour or more drive). I stay in touch with her husband and he let's me know how she is, etc... That is helpful for me. But it is hard on my self esteem when she completely shuts me out of her life. (it's not just me - she does it to everyone outside of her immediate family) When we finally are together she is usually very glad I'm there - expresses that she is depressed, almost grief stricken at the challenges of her illness, yet I can't get her to try to improve how she responds to the challanges (It's like it makes her tired to think about any changes at all yet the longer this goes on, the more and more depressed she is.) She drinks a boat load of alcohol (says it's the only thing that makes her feel better - she has a lot of pain with the lupus- I'm quite certain she is an alcoholic and I've said so, but she won't discuss it at all. ) Our relationship is very close. I love her dearly and this is so hard to watch (even from a distance).

Does anyone have any suggestions for her (how do you manage lupus symptoms? What makes you feel better? What meds are you on and how well do they work for you - side effects? benefits?) Or suggestions for me?

 

[Nanajo1]

Your friend is very lucky to have you as a friend. I don't have Lupus but another chronic disease so I can't help with medical suggestions but I know the feeling when you are sick and tired of feeling sick and tired. Pixie Dust to both of you.

 

[tink2dw]

Hi Puffy2, I'm Tink's daughter and I thought this information might help you.

Howie Dorough of the Backstreet Boys has a Lupus foundation in his Sister's name. He does a ton of funraising to help find a cure and I think he offers support to friends and family through his web site. here's a link to his site, I hope that helps Dorough Lupus Foundation: Wings of Hope

I hope that site helps, and your friend is truely blessed to have you in her life. I'm sure she would do the same for you if roles were reversed. Lots of Pixie Dust to you and your friend.

 

[Puffy2]

Thanks - I appreciate your kind words. Not easy, is it?

 

[melissalovesdisney]

I have lupus and I'm scared to say I sound just like your friend-except for the alcohol.

When during a flare, I also tend to suffer from depression. Everything in life can seem overwhelming and you feel very vulnerable. It is hard to look forward to a future and care about much of anything when you feel are in pain, scared it will never end, and the thought of going to the grocery store seems like running a marathon.

My only suggestion is to once a month if you can manage-tell her I am going to come get you, help you get ready if that is what is needed, and this is what we are going to do. Show up at her house and help her get ready. She will feel better with an outing and also with some friendly "face" time. The problem is the more isolated she gets, the vicious circle of despair and lack of energy just worsens.

I agree-she is VERY lucky to have you as a friend.

 

[Puffy2]

Melissa,

Does limited exercise help you ? What kind? Do you try to exercise during a flare or what is the best way to manage them - total rest?

I'm wondering about diet too.

I'd love to see her once a month - often she won't let me come out. I have gone anyway and ususally she seems glad I came. She can get really mad though , so boy it's a toss up and since I have children I have to arrange child care for when I do that it is stressful for me to go when I know she has said she doesn't want me there. Make sense?

I'm supposed to see her this week - I have a surprise for her I've arranged. She has always had a facination with Falconry (birds people train to hunt) and I found this very kind man that lives near her who is willing to meet me over there at her house to show her his bird, talk to her about how they are trained, etc...
I hope it is something she will enjoy. I'm trying to spark her interest in "living" again - that life still has a lot to offer even if she can't do many of the things she once did.

 

[melissalovesdisney]

It depends on the flare-sometimes when it hurts to move, I don't exercise at all...but this probably ends up making my joints even more stiff!

The diet issue is one I really haven't done well on-I seem to crave comfort food! I guess emotionally dealing with a friend with lupus is similar to dealing with a friend suffering from severe depression-it is very challenging to get them excited about anything. I know I am a completely different person when not in a flare-I'm excited about life, optimistic and funny-when I'm in a flare I'm just totally depressed.

Your idea sounds WONDERFUL!!!!! You are such a great friend to her! I understand the challenges-ironic thing is my best friend has lupus and was diagnosed several years before me. I was not too sympathetic. I'm a single parent of a special needs child and arranging to visit or help her seemed insurmountable at times. Do the best you can do, and do NOT feel guilty. She is lucky to have you in whatever capacity you can be her friend.

 

[itscc2u]

Hi... I too am a Lupus Sufferer and mine is compounded by fibromyalgia, rheumatoid arthritis, depression, kidney disease.

Your friend sounds exactly like me except for the alchohol, I seldom touch the stuff.

I shut down totally my husband understands my 3 yr old kind of does and most of my friends are too far away to even care. I would kill for a friend to come shake me up during a flare come get me take me for a car ride or even play cards with me.

Howie Dororugh (sp?) form Bakcstreetboys does have an informative website, also the lupus foundation too...sorry on a mini-vacation and all my bookmarks are on my desktop at home.

Your friend is VERY VERY lucky to have you around some of us arent so lucky... I think she will love the Falconry visit and your visit..once a month no matter how bad she feels go see her and like Melissa says she would be greatful for any help even if its to help her get dressed.. I get that way a lot and it helps when my husband can get me dressed and otu of bed into the recliner in the living room

 

[Puffy2]

Melissa.,
I can't believe your best friend has it too - that is so weird!
I visited the dorough site and found it helpful - especially with the links.
Is there a message board where people w/ lupus and friends family can share info, etc...??

Thank you, too, Christine for your words.

 

[tink2dw]

I did a seach on www.Google.com and found this Lupus Message Board it seems to be an active one.
here is the link just click below
http://www.healthboards.com/cgi/for...forum=Lupus&number=77&DaysPrune=75&LastLogin=