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Discussion Starter #1
Ok, so I guess that I haven't "come to terms" with this disease as much as I thought I had. I have been feeling bad for a long time and was excited to finally have a diagnosis. When I started taking Plaquanil I started feeling better...better than I have in at least a year. I started feeling like my old self and like my troubles were finally over. I guess I was overly optomisitic. I had a bad week and although I still feel better then I did before medication, I just don't feel great. I am sure that it has something to do with how hot it has been in SUNNY California and I fear that with summer coming is just the beginning. People ask me all the time how I am doing and I say "great!" because frankly I am sick of being sick so I am sure that everyone else is sick of it to. It is hard for me to talk to anyone about this because people don't really understand what it is like. I am generally a very happy, positive person so this is new territory for me. I want to be done with all of this but I know that that is not going to happen. I guess that I need to work on accepting that in some ways my life has changed. This has been especially hard for me because it has slowed me down and affected my ability to do everything that I want to do with my kids. I don't know, I guess I just needed to vent to someone who actually understands what this is like for me. To end on a positive note, what I can say is that I am absolutely BLESSED with a caring, supportive, loving husband that has been nothing but 100% supportive.

Thanks for listening!

~Dale
 

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Dale,:hug:

Being diagnosed with lupus is a huge adjustment. It takes awhile to get a handle on it. Your emotions are still all over the place.

I still feel that way sometimes too. (I was diagnosed in 2004) In fact while shopping this afternoon, I got blue because I was getting very fatigued.:( Started to think if I didn't have lupus I could do what I wanted to do and not get so tired.

While you were feeling so good, did you over do a bit? I tend to do that on those rare occasions.

Along with being diagnosed with lupus comes depression. A lot of members are are depression meds to help get us over the rough times.

Take care and rest and listen to your body.

:grouphug2:
Lyn
 

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I can empathize with feeling bad about always saying you feel awful. My husband is military, presently in another state training, and I was just diagnosed. I'm scared, and I feel like crap. Every time he calls I tell him what I've been doing, (usually not much of any particular interest) and how I'm feeling. I'm afraid he will get tired of me being miserable and just stop calling.

I'm presently waiting for my plaquenil to help too. I felt good for most of last week, but I'm aching again today. Still struggeling with the diagnosis. Not sure if I liked it better when it was just "in my head" or not.

Best of luck!
-Elizabeth
 

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"I haven't "come to terms" with this as much as I thought I had"

Me too! And I was Dx'd a few years ago. Every few weeks I discover a new area of denial and a need for greater acceptance of reality. Fortunately nobody is demanding that we be perfect at this Lupus stuff.:lol:
All the best,
Douglas+
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Hello Dale and hugs :hug:

I would agree with the others. This definitely isn't easy!

Like you, I thought I had accepted things pretty well. My diagnosis came after eight years of knowing something was very wrong so it wasn't a great surprise. On the whole, I think I did manage pretty well and, like you, I don't tend to talk to people who can't possibly understand what's going on.

However, I have now learnt that that acceptance is very much an ongoing thing and I don't think it will ever be over. I suppose that if we accept fully, as in 100%, we might feel we've given in to it. So now, I'm quite happy to readjust every so often and to try and achieve 95%. Even if, every time I get a bad patch or something new has to be affronted, I might struggle a bit to rebalance.

I have recently learnt that, although I won't really "talk" to others about how I'm feeling (not in depth anyway), that I can let it out a bit more and that I don't see why I should always "hide" that I'm ill just to make others feel better. So now, sometimes, if I'm really having trouble smiling for someone I've just met in the supermarket (on the rare occasions I can go), I just say quite matter-of-factly that things aren't too great today but that tomorrow is another day. That way they don't feel too bad but they realise that I am not feeling too good.

hugs :grouphug2:
Katharine
 

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Wow. I could have written your post, Dale, word for word (substitute "grandchildren" for children), two years ago. Just as I started to feel better and get happy again, I'd get struck down. There are still days when I'm in denial ("Jesse, there's been a mistake. You don't have lupus after all!) But believe me, as time goes on, you'll adjust. It's not easy, but it's doable. I expect that as time goes on and your perfect med mix is found, you'll feel better and better and you'll be the one encouraging others who are starting this difficult journey. Mark my words.
 

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Dale,
It makes it all that much easier to except when you have support of loved ones like your husband. It also take time to except that life as you knew it will have to change for your health. It is good to hear that the medicine is doing it's job and like anything you will have good and bad days. If all you had was good days then you would not be as grateful for the good days right?

You can't help the way you feel whether it be fine or sick, but I do know what you are saying as I started getting well you look fine to me lol, come walk in my shoes for a week bet you don't say that. Most people could not handle the pain and set backs that we incounter everyday. Your possitive approach to the disease will be what makes it easier to handle for all of you.

I hope you make it through the summer with little flares. Just remember air conditions is good sun and heat are bad. I am not sure if you have it there but we used to go evening summer so it would be better for me and we all loved it.
 
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