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

[helena]

Please, can I just complain and cry a little here tonight?

I'm not a troll, I'm not a whiner. I'm a real live woman. I have a great husband and IRL friends. I have a beautiful life. Homeschooling is a dream.

 

I just want to find comfort in the love of TWTM tonight. Anonymous, but familiar. I need a place to be 100% weak tonight.

 

 

My body hurts because I'm in the middle of a flare. My heart hurts because some family doesn't seem to care or understand that I can't do things like everyone else anymore. Ever.

 

My heart hurts because I have serious brain fog all of the time. I don't answer questions properly, I can't drive further than the market (for a year now). Not being able to drive long term is crazy!! It's a horrible adjustment. I want to be normal again. I want to be free again.

 

I hate that I'm embarrassed to post here too much. This is the only place I hang out on the computer. Now that I'm more home bound it's become a great way to chat and learn. The problem is I have such a hard time formulating thoughts and words. I've never been a very good writer/speaker, but it's extra hard to do it on a homeschool site where everyone is bright and sharp and remembers what they've been teaching in grammar lessons.. :001_smile:

I hate feeling like I'm not making any sense and I hate it when I can't understand what people are saying to me. It's so embarrassing!

 

I want to remember everything I've learned in life, all the books I've read, all the things I've done. I want to be a reflection of all my life experiences.

Instead I'm left with a second rate brain. Second rate body.

 

On one hand I don't want everyone to know what's wrong with me, on the other I wish I could have a blinking sign on me that said, "Please be patient with me, I have Lupus and I'm very confused".

 

Did I already say that I'm hurt about important people in my life not caring a hoot about what's happened to me? I just can't believe it... I can't believe that at the end of the day some people have failed me. I hurts so much. I want to vomit and tear my hair out. I want to scream and cry. I want to break everything and give a slap across their face. I want to spit. I want them not to be like that.

I want them to change. They will never change. I know it's me who has to change. How does one do that?

 

I hate that I'm actually going to post this. It seems a little pathetic. Please don't make me go to the Lupus support sites. :D

 

..I seriously hope my husband never peeks in here and sees this. :blushing:

Okay, one more.... I hate seeing him sad because I'm sick.

 

Okay this is the last one. I'm doing really good health wise for someone who has lupus. People don't generally die from it anymore. But while I'm on a roll right now.. I don't want to die from lupus. I don't want to have a stroke, or a heart attack in front of my family at 40, I don't want to have organ failure. I don't want to die from this stupid crappy disease. I don't mind the idea of dying. honestly. I hate lupus.:crying:

 

Oh man, this got long..

I better make this constructive...

How do you all find peace about people who you keep in your life, but are a total disappointment? How do I protect myself and still love them? People with chronic illness, do you think it's typical to have someone in your life who is basically annoyed with you for being sick?

[LunaLee]

Sorry, I'm not a very eloquent person and don't have much in the way of advice, but I just wanted to give you :grouphug::grouphug::grouphug: and one more :grouphug:

[Random]

:grouphug::grouphug:

 

Is your dx recent?

 

:grouphug:

 

This flare won't last forever. :grouphug:

[Guest Dulcimeramy]

Helena, listen to me. I have lupus, too. I hear you, I believe you, and I understand so much of what you've said.

 

:grouphug: <--------- That is a very gentle hug. It actually is in the form of a warm blanket.

 

My husband is here waiting for me to go to bed, but I'll look for you tomorrow and chat some more.

 

I hope remission finds you soon, soon, soon. You know that this anxiety is part of it and it is something we live through. We can't stop it but we come out the other side every time. You know that you've had good days, so believe me that you'll have good days again.

 

Blessings and healing to you. Talk to you tomorrow.

[Aelwydd]

You know what, you don't need to make this thread "constructive" by asking other people gratuitous questions (if that is how they were meant). I think this thread is perfectly justified as a place for you to connect with other folks and express your feelings.

 

I don't know you, and I'm just another anonymous person. But if it makes you feel any better, your thoughts and your writing seem pretty clear to me. I admire the fact that you are able to function well enough to continue hs'ing, because Lupus is no joke. I wish your family and friends could better empathize with you, especially when you are in pain.

 

I wish I could do more to help, but I'm offering an "ear" to listen. Your feelings are completely valid, and I hope you feel some encouragement from other posters here, too.

[FrogMom5]

I'm sorry for everything that you are going through. I think people who are annoyed with you for having a chronic illness don't understand. Maybe they can't comprehend it or maybe they're selfish. It more likely that it hurts them to see you hurting and they feel helpless to resolve the problem for you so they are angry and unfortunately, take it out on you. It's still immature of them to take their anger out on you but, it happens all the time.

 

As for your part, can you limit contact w/this person? That is what I have done w/family members who insist on treating me poorly. I still love them but I have to put distance between them and myself.

 

Hopefully others will post better solutions for you. For now, :grouphug: :grouphug:.

I hope your flare up subsides soon and you feel better. Don't be afraid to post here - many of us feel fuzzy brained too. :001_smile:

Denise

[fhjmom]

:grouphug::grouphug::grouphug:

[sparrow]

:grouphug::grouphug::grouphug:

 

My mom has auto-immune disorders and syndromes that went misdiagnosed for years. I'm so sorry you're in low spot right now.

 

I have more I wanted to say, but I need to get to bed (husband is nudging). I just want you to know that I hear your frustration and sadness. Lupus is, plain and simple, a really sucky disease.

 

:grouphug:

[Nestof3]

I am so sorry you are going through this. I am glad you took the time to share here. It really helps to hear what a person with lupus goes through. Hugs to you, and pat yourself on the back for giving of yourself.

[Once]

Oh man, this got long..

I better make this constructive...

How do you all find peace about people who you keep in your life, but are a total disappointment? How do I protect myself and still love them? People with chronic illness, do you think it's typical to have someone in your life who is basically annoyed with you for being sick?

 

These are hard questions to ask even without the complications of Lupus. I know because I have had to ask them before and they leveled me to the ground. I am sooo sorry you are going through this and will pray that you find a place with more peace and health soon!

 

:grouphug:

[helena]

:grouphug::grouphug:

 

Is your dx recent?

 

:grouphug:

 

This flare won't last forever. :grouphug:

 

I was diagnosed maybe 4 years ago. You're right, they all pass. I can't forget that.

[Lilymax]

Hugs...I understand what you are saying.

 

Seven years ago, I was diagnosed with lupus. After a few years, I switched doctors, and the new doctor didn't feel I fully fit a lupus diagnosis. Now, another doctor later, she agrees with the second doctor. Something is wrong with me, autoimmune-wise, but I don't fit neatly into any one diagnosis. (I've since learned that's very common with autoimmune diseases.)

 

How long has it been since you were diagnosed? It took me a while to come to grips with the fact that I was broken, that my body didn't work right, and that I'd have to live with this stupid disease --whatever IT was-- the rest of my life.

 

There have been many times that I've had to not do things because of my illness. And I've definitely encountered those who don't understand, or who seem put-out because I'm sick and can't do what they want me to do. It used to really bother me, to make me sad because I was letting them down. But you know what? To use an overused phrase, it is what it is. Lupus is your reality; something similar is mine. If people can't accept it and accommodate it when needed, then that is their problem. And I pray for God to heighten their sense of compassion.

 

Maybe God put me into their lives to teach them compassion? Who knows?

 

Having my third child was the best thing I've ever done, because I went into remission during my pregnancy and only over the past few months have my symptoms started creeping back. Remission was so amazing--I had forgotten what it was like to live without pain and sometimes crippling fatigue.

 

I have hope that remission will return--I have a 55-year-old friend who has been in remission for almost 10 years. It happens. Always hold out hope that it will happen to you!

 

People without chronic illnesses don't understand, and I've had to stop being upset with those who don't get it, because really, unless they've been there, they CAN'T. Kind of like how no matter how much you babysat, or how many books you read before becoming a mom, you find that NOTHING really could prepare you for the total reality of it, know what I mean? It's just so much more than you could imagine, and you find it easier to forgive those who are clueless because you know that you used to be, too.

 

I'm sorry you're struggling, but really, I do understand. I understand hating this THING that's come upon you, that you know has no real cure, that could turn ugly overnight with no choice involved on your part. It's hard. I'm sorry that you are dealing with it, too.

 

Hang in there. :grouphug:

[trailofsparks]

Helena,

Have you ever read this, The Spoon Theory? About people who don't "look" sick? It is a story written by a woman with Lupus. She wrote it to help others understand her condition. Maybe you could use it for the people in your life, who you wish could understand some things about you.

 

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

 

I am glad you shared. While reading your post, I thought you sure did pour out your heart and thoughts very clearly. I could imagine feeling the way you described: angry, frustrated, hurting. I am so sorry for what you and your family are going through w/Lupus. Saying some prayers for you tonight. Peace be with you.:grouphug::grouphug::grouphug:

[Jean in Newcastle]

I understand. :grouphug::grouphug:

[Carol in Cal.]

I want to give you a hug with a warm feather blanket, so light that it won't hurt you but so warm that you will feel like you could just sink down into it and rest yourself for a long time. Here it is: :grouphug:

[LittleIzumi]

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

 

(It's a big blanket.) :)

[Jean in Newcastle]

Helena,

Have you ever read this, The Spoon Theory? About people who don't "look" sick? It is a story written by a woman with Lupus. She wrote it to help others understand her condition. Maybe you could use it for the people in your life, who you wish could understand some things about you.

 

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

 

I am glad you shared. While reading your post, I thought you sure did pour out your heart and thoughts very clearly. I could imagine feeling the way you described: angry, frustrated, hurting. I am so sorry for what you and your family are going through w/Lupus. Saying some prayers for you tonight. Peace be with you.:grouphug::grouphug::grouphug:

 

I just read this link! Oh, my goodness! I have fibromyalgia instead of lupus but this nails it.

[helena]

Oh my gosh... thank you everyone soooo much. I'm running to the computer to find kind and helpful posts, then running back into the kitchen (and quickly pulling myself together) to finish my cooking.

These late fencing night are wacky!

 

I love being a mom so much. I'm so hurt right now, but my kids are happy and hungry. I love how being a mom can keep you in the good place, whether you like it or not.

 

I'm sad and I'm tired, I'm starting to feel that "I think I cried it all out for the night" feeling. I'm left tonight with a great family, a house that smells like black beans and Mexican rice, and a feeling of being a very lucky person to have found TWTM. I don't care if it's on the computer, or that that it isn't IRL. It feels real to have someone send a hug. What a funny world we live in...

:grouphug: to you all tonight. thank you-

Edited May 27, 2011 by helena

[Twilight Woods]

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

[helena]

Helena,

Have you ever read this, The Spoon Theory? About people who don't "look" sick? It is a story written by a woman with Lupus. She wrote it to help others understand her condition. Maybe you could use it for the people in your life, who you wish could understand some things about you.

 

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

I am glad you shared. While reading your post, I thought you sure did pour out your heart and thoughts very clearly. I could imagine feeling the way you described: angry, frustrated, hurting. I am so sorry for what you and your family are going through w/Lupus. Saying some prayers for you tonight. Peace be with you.:grouphug::grouphug::grouphug:

 

Wow.

Thank you so much for posting this. I am going to use this. This is me. I can't believe she actually explained it!

thank you! :grouphug:

[mazakaal]

:grouphug: I don't have a chronic illness, and I don't have any brilliant advice for you. I wish I did. But I have been disappointed by people close to me. It's very difficult, but I just try to accept them for who they are and not be bitter or angry. They are who they are, and I'm never going to change that. I'm so sorry you're going through this. I hope that you can find someone who will be the friend that you need right now.

[Hedgehog]

Helena,

Have you ever read this, The Spoon Theory? About people who don't "look" sick? It is a story written by a woman with Lupus. She wrote it to help others understand her condition. Maybe you could use it for the people in your life, who you wish could understand some things about you.

 

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

 

Wow. Just wow.

 

 

Helena - a gentle :grouphug: from someone with CFS.

[Food4Thought]

:grouphug::grouphug::grouphug: My dad was recently diagnosed with lupus, on top of fibromyalgia and lyme disease and chronic fatigue and whatever other labels they could find to describe *pain*. I've seen it. I'm saddened that you have people that don't believe you, but just know you're not alone. And you did a great job of writing/communicating all that. I pray you have a peaceful night. :grouphug::grouphug::grouphug:

[Sugarfoot]

:grouphug: to you. We're going through something with our DD right now, and it's scary. So far, they've come up with Reynaud's. We don't know what else we'll eventually be dealing with. I hope you feel better very soon.

[Oops, duplicate account :/]

:grouphug::grouphug::grouphug:

 

I understand too,even the disappointment of loved ones not getting it. Now thatIm notpregnant or nursing and my baby is getting closer to three and potty training life ismuch moremanageable, but there was a time when I was incapacitated with grief and despair overchronicillness dxs and had almost no help whatsoever at the worst of it. I so understand the second rate mind and body thing.Im learning to cope both physically and emotionally and life is brighter now. Im going to read you opto dh. I think it will help him understanda bit more. Its just so hard for him to see me as sick, and in someways that is a blessing. I appreciate now that he sees me still as that strong, young, and healthy bride he married nearly 10 years ago. :crying:

 

:grouphug:

Edited May 27, 2011 by JENinOR

[specialmama]

:grouphug: I'm glad you could be yourself here, Helena. I'm sorry for what you're going through and I'll be praying for a speedy remission. :grouphug:

[happyhomemaker25]

I am so very sorry for you.

I could have written a lot of this with my Type 2 Diabetes.

I think with any chronic illness you feel defeated and robbed of a normal life at some point.

My thoughts are with you, today.

[JudoMom]

:grouphug::grouphug::grouphug:

 

I'm being monitored for lupus, and have been diagnosed with autoimmune hepatitis. Joint pain, liver pain, fatigue, and brain fog are my main issues.

 

I'm still coming to terms with my dx, but I get so mad at my body. I get mad that it's keeping from some goals--running a 5k and testing for my black belt in Judo are two very important goals I set 5 years ago, and I haven't been able to achieve them yet, even though I'm so close to the black belt.

 

I get scared because I don't want to die young. I want to sit on the front porch with my husband and watch our children and grandchildren grow up.

 

I feel guilty because I can't be everything I once was. On the good days, when I'm able to run the household like I used to, I wonder why I can't do it everyday. Then I have a day where I feel like I've been hit by a train and it's a struggle to think through and do just the basic things, and I wonder what's wrong with me.

 

Anyway, I understand a bit where you're coming from, and here's a :grouphug::grouphug::grouphug:.

[Tammyla]

:grouphug:helena:grouphug:

[Guest momk2000]

I have a friend with Lupus and see what she goes through, I'm so sorry for your pain. :grouphug::grouphug::grouphug:

[kalanamak]

How do you all find peace about people who you keep in your life, but are a total disappointment? How do I protect myself and still love them? People with chronic illness, do you think it's typical to have someone in your life who is basically annoyed with you for being sick?

 

:grouphug: They know not what they do.

:grouphug::grouphug: You are very brave. Lupus is very scary to me.

[Stacyandtherugrats]

:grouphug::grouphug::grouphug:

[Impish]

Chronic pain sucks :grouphug:

[TracyR]

I don't have Lupus. But my mother had it while I was growing up as a child.

 

I do have thyroid disease and I can so relate to how you feel. I too would love my regular self back. I'd do anything to have my old self back.

 

The brain fog sounds a lot like thyroid. This is a common symptom of thyroid disease. Have you had your thyroid checked by chance?

 

I'll give you a big cyber hug (( )). No one in my family understands or cares about how I feel. Not even my husband. I know I have days where I just wish he could understand. But he can't because he doesn't feel like I do.

[*********]

My sister has lupus. :grouphug:

[thescrappyhomeschooler]

:grouphug::grouphug:

[Pax]

I'm so sorry. :grouphug:

 

I was diagnosed with MS last October and can understand a portion of what you are describing. Living with the brain fog, the inability to speak sometimes, the injuries I cause myself, the fatigue and the constant pain is incredibly frustrating to me and to those who love me. I love the blog post above.

 

My husband still doesn't believe the doctors. I understand his disbelief as I've been wrongly diagnosed before but it can make things more challenging for me as he is of the "pull yourself up by your bootstraps" camp. I ended up finding a counselor who specialized in counseling those with a chronic disease and she helped me work through some things.

 

Anyway, this is to say you are heard here and we are all hugging you from a distance. Everyone needs time to be weak. Everyone needs support. We are here to support you!

[Flux]

:grouphug:

Reading all these posts made me cry. I can relate. I have been having "flare ups" for the last year of some sort that no one has been able to diagnose. Then a few months ago my blood felt like it turned into cement, and I got a blood clot in my arm, leg, and I think I was close to a stroke, as I started having weird vision issues in one eye. This was bizarre because I am only 15 pounds overweight, 34 years old, cholesterol is fine, and I never even took birth control pills. I am on coumadin now, but my Doc said that she can't keep me on dangerous drugs without a diagnosis. When my anxiety creeps up I get terrified that I'll have a stroke or something when they take me off the anticoagulant. I think it's easy for people to forget that everything is so hard for me and that I am in pain, it's not like I'm covered in blisters or something to remind them. Also, I try so hard not to complain or whine, keeping it inside my head. I hate to admit it, but sometimes when I see someone (on the street or wherever) I can get so jealous and angry that they are normal and don't even appreciate it. I know this is bad, and I don't actually have any idea how their life is, but sometimes I feel this way anyway. Somedays when my kids complain that "It isn't fair!" I want to join in. It took us so many years to get pregnant and now I have two great kids and I want to be there for them. Then I think of someone with worse problems than me and I feel like a schmuck for my previous feelings. Ugh. Exhausting.

 

I'm sorry. I talk too much. I really just meant to say that I understand, but I don't have a diagnosis to share with you to show why I understand, hence, the above whine and explanation. I should have probably just vented by calling my husband. Half of this post is probably fueled by PMS, to boot.

 

:grouphug: again. Maybe have a soak in the tub?

[helena]

Thank you everyone for your kindness and for listening to my hurt. I got up this morning, I took that recommended hot bath (with epsom salt.. aaaahhhh), and went out to conquer the day.

I finally made an appointment with a new rheumatologist. My old one is not working for me anymore. I'm excited at the idea of a fresh perspective on my health.

 

I'm feeling much more peaceful about the family situation. Just knowing that this is a common thing in dealing with chronic illness seems to lift the burden.

 

It's awful to hear about other board members with serious health issues, diagnosed or not. :grouphug: But it's.... I'm not sure what the word is... it's something helpful to hear from you all. I don't take it all so personal, and it suddenly doesn't seem as lonely. I wish that all of us could be cured of our illnesses, and suffering. But I'm also impressed by how we're all hear doing our homeschooling thing, chugging along, tired, happy, making it happen. :001_smile:

Also :grouphug: to everyone with family and friends suffering with this type of stuff. I'm impressed with the fact that you even know the name of the illness. Not everyone pays attention. :glare:

 

Your encouragement and kindness is felt and is very uplifting.

Thanks again! :grouphug:

[Jean in Newcastle]

I'm impressed with the fact that you even know the name of the illness. Not everyone pays attention. :glare:

 

 

 

I'm glad that you were able to get up and face the day.

 

Re. relatives paying attention - I've had fibromyalgia for 20 years. I've never hidden it, though I don't talk about it all the time either. (I talk about it much more on this board than in real life!) Last year when I made an appointment to go across the country to see a specialist, I mentioned it to my family. Their response: "Oh, you're sick?" :banghead:

[Mejane]

Thank you everyone for your kindness and for listening to my hurt. I got up this morning, I took that recommended hot bath (with epsom salt.. aaaahhhh), and went out to conquer the day.

I finally made an appointment with a new rheumatologist. My old one is not working for me anymore. I'm excited at the idea of a fresh perspective on my health.

 

 

 

Have you ever considered seeing a naturopath? They can be extremely helpful in managing chronic conditions. I'm sorry you're in pain. :grouphug:

[helena]

Helena,

Have you ever read this, The Spoon Theory? About people who don't "look" sick? It is a story written by a woman with Lupus. She wrote it to help others understand her condition. Maybe you could use it for the people in your life, who you wish could understand some things about you.

 

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

 

I am glad you shared. While reading your post, I thought you sure did pour out your heart and thoughts very clearly. I could imagine feeling the way you described: angry, frustrated, hurting. I am so sorry for what you and your family are going through w/Lupus. Saying some prayers for you tonight. Peace be with you.:grouphug::grouphug::grouphug:

 

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

[NoPlaceLikeHome]

:grouphug::grouphug::grouphug:

[helena]

Have you ever considered seeing a naturopath? They can be extremely helpful in managing chronic conditions. I'm sorry you're in pain. :grouphug:

 

I haven't, but I'm interested.

I saw a acupuncturist regularly for years with much success. The cost started to make me feel guilty, but I think I need to get over it and go back. I've also worked a little (over the phone) with a traditional Persian healer guy in Iran (that's not his official title :tongue_smilie:). It was interesting to see how similar the Chinese and Persian diagnosis and treatment were.

[Mejane]

Have you read Dr. Andrew Weil's book Spontaneous Healing? I read it when I had Lyme disease. In it, he talks about using natural medicine, diet, and mental/emotional/spiritual energy to help manage chronic conditions. There are many stories of patients who have achieved remission. Your library most likely carries it.

[jenL]

I feel as if I always say I don't have any advice in cases like this, but I truly don't. I don't know enough about Lupus to even suggest something and doing so would be incredibly unfair to you.

 

I want to say that your post was eloquent and heartfelt, so you expressed yourself very well. :grouphug:

 

I will pray for you to have better days. I am sorry you are living with such a nasty disease. Blessings to you!

 

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

[BlessedMom]

:grouphug::grouphug: and more :grouphug::grouphug:

[mereminerals]

:grouphug::grouphug: Warm, gentle hugs here.

 

I can totally relate. I was diagnosed over 13 years ago, but have had Lupus since I was a child. It is so hard for those who have never experienced anything like it to relate, even though they want to. I had my husband watch a video one time that Rob Thomas wrote for his wife, who also has an auto-immune disorder, called Her Diamonds. For some reason, this helped him to visualize my pain when I am in a flare.

 

 

Unfortunately, my husband was bit by a tick and they think he has either Lyme disease or Ehrlichiosis (?sp), both which have symptoms very similar to what is experienced in a Lupus flare. He now knows what I have to live with and has apologized so many times for his ignorance. He has said at times he acted like he didn't care because he didn't know how to make me quit hurting and it was killing him inside to not be able to fix it for me.

 

I will be praying for you.

Edited May 28, 2011 by mereminerals

[Mommy22alyns]

I'm sorry. :grouphug::grouphug:

[elizabeth]

I love you and am sorry that you have a chronic illness. I am also not unfamiliar with loved ones not accepting our limitations. I would be delighted to be normal again but that is not possible. :grouphug: