I hate Lupus, I hate the way it's changed my life

[Parrothead]

I have nothing but prayers and :grouphug:.

[trailofsparks]

I want to bump this in case anyone missed it. I can't wait to share this with friends and family. I feel like it's everything I would want to say, and I could leave it at that.

 

CJ you've made life a little better for me. :grouphug: thank you

 

Dear Helena,

I am so thankful this is helpful for you. It was helpful for me, a few years back, when my dearest friend who was diagnosed (after misdiagnosis for 18 yrs!) with Lyme disease. She gave this story to me, to help me understand her . . . and I was so grateful to have that understanding. I'm glad you feel understood and I hope your loved ones are helped as well. God bless you and them.

[Guest VALefty]

I have Lupus too. I've known for about 2 years now. I would highly suggest reading "The Lupus Recovery Diet" by Jill Harrington. I have new hope and it the diet has made me feel so much better. Check it out.

 

Christy

 

"I have Lupus...Lupus does not have me":grouphug:

[TheAutumnOak]

:grouphug::grouphug::grouphug::grouphug::grouphug:

 

I am not sure what to say, but I appreciate your post and hope this flare passes quickly...It is okay to reach out to us and post...I just wish I could do something more than just read what you said...

[Denisemomof4]

I wish I could write as clearly and passionately as you do! Your words were very powerful and your point came across very clear. I'm so sorry for all you're suffering through: the pain, the sickness, your own struggles with it all, the people you love who have failed you. :grouphug::grouphug::grouphug:

[cin]

Oh, Helena, I feel your pain. I don't have lupus, but I have been plagued with health problems, none serious, but all worrisome and/or disruptive over the past few years. And I could have written long portions of your post. I live with chronic pain (discs in my back are screwed up) and recently developed an allergy to either the NSAIDs or the percocet.

 

I have the young ones and I can't do with them the things I want to do (especially now that I can't take the pain medicine). And while I can keep strong for them, inside, I feel like life is just spiraling out of control. And nobody knows how I feel. Except for all of you guys, now!

 

Gentle Hugs and Prayers for you!

[helena]

Wow! It's kind of sad to read this post a month later. Once you pull yourself out of a dark place, it can be odd to look directly at that pain again. This is the closest I'll ever get to keeping a diary and rereading the entries. :tongue_smilie:

 

My health is slowly coming back. My summers are kind of like everyone else's winter. It's a quite, slow, staying home indoors time. I'm trying hard to stay positive and not let other people push me or make me feel guilty for saying "No".

 

I'm learning a hard lesson, that many people won't change the way they treat me just because of my diagnosis. It's not personal, just the truth (at least in my life).

I need to grow a backbone, and start protecting myself better.

Ahhh... and lighten up a little, laugh and relax. I don't want to forget to be light and ridiculous. I definitely don't want to look back and find that I let Lupus take away more than it needed to.

 

Thanks again everyone, for being so kind and loving to me... powerful stuff :001_smile:

[trailofsparks]

Oh my goodness, it's great to hear your update, Helena! (said through teary eyes!) Good for you:hurray:

 

Of course, as with the ebb and flow of Life, you can let us know again if you feel overwhelmed :)

[Oakblossoms]

Good update! Did you see your Acupuncturist?

[*Inna*]

I'm so sorry you are going through this, Helena. :grouphug::grouphug::grouphug:

[JudyJudyJudy]

Helena, I didn't see your original post until now, but I'm so glad you're doing better. :) I have a chronic illness (or, more accurately, illnesses), so I can relate to a lot of what you posted.

 

A change in diet has helped me a lot, but I'm still confined to my home for the most part (I can't even go into a grocery store or into my family's or friends' homes because of my severe chemical sensitivities). Few of my friends or family members will even attempt to be fragrance-free so that we can spend time together, and it's very hurtful. It's been difficult for my husband as well (my son also has chemical sensitivities, though not as severe as mine, so he can better understand). It's hard.

 

Take care of yourself. :grouphug:

[ElaineJ]

:grouphug: Helena! I am so glad that you feel a little stronger right now.

 

I've been thinking about the question in your original post regarding people who seem frustrated at you for feeling sick. I have fibromyalgia, so I can relate to your experiences and feelings here. I think that people are tolerant of sickness as something you "fight" and "get over" within a period of time. Overall, our culture is ill equipped to compassionately live alongside chronic weakness. Actually, I have felt the same attitude coming from most doctors I have consulted in my various efforts to "get well". If it seems that my condition is not going to change (which it does), no one knows what to do with me and it is easiest to just try to forget it. When confronted with the effects of the situation they had forgotten about, some people get annoyed. Something that isn't really there somehow is managing to get in their way. It hurts, but it isn't personal, in a way. I suspect that those living with other types of chronic disability or even just old age probably feel the same. I try to just give grace and pray that God can use these experiences to give me insight in caring for others.

 

Blessings,

 

ElaineJ