Looking for support - find it here in this discussion


Patients Lupus

Looking for support - find it here in this discussion

Posted on

@Chineloogbonna Hey my friend, I hope you're feeling better today.

I have been reading all the post's and truly believe we need each other because we all understand what each one is going through.

My husband is a saint and I love him dearly BUT he can't truly know what we all go through and to be fair it's not his fault because he doesn't have this disease.  But what he does have is impathy and lot of love.

I was asked about my heart issues.  I had trouble with it skipping  beats but nothing like what this day started presenting.  The irratic heart beat and breathing issues the day my friend took me to the hospital.  I knew something was very wrong.  From there I started presenting with issues like high blood pressure, more trouble breathing and I'm talking about just sitting...and trying to talk was a struggle.  So now I'm on blood pressure medication for high blood pressure! Huh🀨

Do I think my heart issues are related to my Lupus? I think so but both my maternal and paternal families have a history of some sort of heart disease πŸ’”.

My father had 2 heart surgeries, my maternal grandmother died from a massive heart attack.  

Now the weird thing about this is that the doctors thought that the Lupus came from my paternal grandmother.  I was told she was thought to have had rhematoid arthritis but it could have been Lupus.  Again, I was told back then they really didn't know about lupus so πŸ™‚.

I want to share a story with all of you so you can understand and know that our pain joins us in a horrific way and for me, this is my release.  My heart is so heavy when I think of this complicated moment in my life and the hard lessons we learn.  I love my children with all my heart and when I know that there is nothing I can do about having to talk about a difficult situation...it is soooo hard.  

When I told my kids (who are grown now and at the time were in their later teens I believe) . When I told them that this disease is genetic and usually skips a generation, and could possibly effect their children, my one son's response was absolutely gut wrenching.  I was told thanks mom look what you have done to us and look what we have to look forward to... Then their was the one who is quiet and crying.

My sons love me unequivocally...beyond a shadow of a dought. And it is recepricated. In sharing this very private moment with you I hope and pray that you will have an open heart and will seek the right words that need to be said. That you look to wisdom and understanding for everyone who is directly effected by this disease. That your knowledge will be your power and love unconditionally. 

 Now for the guilt and shame I feel about the fact that it could happen.  I love my sons more than life itself.  Their feelings were and still are the most important.  As moms do, my children came first sooooooo.  I am feeling guilty that I was offended at my son's remark.  Knowing the type of person he is, I knew he didn't mean it.  I know his heart.

I think that just sharing part of my journey with you has given me a peace about this moment in time and I'm realizing the reality of it all is to share with others so we don't suffer in silence.  I feel like a horrible mom for having those thoughts and being able to share them with y'all is a blessing but at the same time, I still feel shame for what went through my mind.  Someone is going to be able to relate and I trust with all my heart that this will be a source of help and healing for you.

Good bless and have a favored day. πŸ™πŸ€—

Looking for support - find it here in this discussion

Posted on

@Chineloogbonna Hey again, I also wanted to share with you another experience I went through.

I wanted to give you a theory I have.  I believe I do have heart issues but I have been able to stop taking any and all heart medication. No more narcotics and other meds that counter acted each other.  Or something that acted the same way as another drug so it becomes a hugh vicious circle of dysfunction.

I was on so much medication that I didn't know my right hand from my left hand. Before this all came about I was ripped.  I had access to a personal trainer and I worked really hard to get my body in shape.  As we had mentioned I love being in shape and loved sports.

Choosing to find a better way to deal with all the symptoms and flares has kind of become a mission for me.  I want to live a long, happy and healthy life in a natural way.  To heal with food and going green as possible and giving up as much medication as possible that is man made in a labratory. 

I'm fortunate, I live in a state where medical marijuana is legal and I'm telling you between the medical marijuana, the CBD I'm off so many medications that it is only if it is for life that I take it.

I have enjoyed chatting with you.  I hope one day I can hear about your stories and anyone else who wants to talk.

God bless you πŸ™

Looking for support - find it here in this discussion

Posted on

@naturalremedygurl I think even today Lupus is still underdiagnosed or misdiagnosed, so it could be that your grandmother had lupus but was being treated as if it was lupus. I think some medications work on both though... but I may be wrong.

I thank you for sharing with us... and I agree that our spouses and family, no matter how empathetic they are, they can't understand what we are going through, but that is OK. I think it is good for us to talk to them, but also good to talk to others that know and can understand us internally.

Looking for support - find it here in this discussion

Posted on

Hey all - my name is Kate. I’m 31 and have had autoimmune issues for about 15 years. 

I have been diagnosed with two autoimmune diseases, however my doctor (and now she’s got me wondering too) is suspecting that lupus might be the actual culprit. 

I have had a positive ANA with a homogeneous pattern, though my dna test was negative. I have had the telltale butterfly rash, along with body rash. My lungs have recently joined the fun too, lots of pain and clear phlegm. I do have some joint pain, but mostly I feel like my body was hit by a car while I was sleeping. I have had brain fog in the past, but nothing like what I’m experiencing now.

I’m sorry to bug, but can y’all walk me through what to do next and how to go about this? I’ve been sick for so long, and am desperate to get to to bottom of things and get back to a semi normal existence. 

Thank you so much for any advice or tips. 

Looking for support - find it here in this discussion

Posted on

Hi Kate,

I too experienced something similar to yours.  I was originally diagnosed with Discoid lupus erythematosus (DLE) which according to doctors means you only get rashes with no pain. Uuuhh, not so much! I have since found out that you can actually have Discoid lupus erythematosus (DLE)  symptoms and still have Systemic lupus erythematosus (SLE). I am still new on my journey but the one thing I can tell you is be your own advocate! Speak up and push the issue when you have pain, ask for tests to be administered. Unfortunately, a lot of Lupus pain can not be picked up by an xray or even an MRI. Scream from the roof-top if you have too..LOL! 

I believe mine is affecting my lungs, brain and heart.  Even though there are issues doctors just refuse to connect the dots, not sure why, hopefully you have better luck. I pray for all us Lupus patients as our disease is still a mystery to doctors. Hang in there!!!

Bless, Chi

Looking for support - find it here in this discussion

Posted on

Hey friends and welcome Kate.  You have found a wonderful site full of articles and medical information pertaining to your illness as well as friends who are going through this same journey that you were on.

Unfortunately I think I can speak for the majority of the people that I have spoken with over the years say that to diagnosing, along with the processing of medication.  Figuring out what's really happening and then having other things happen is unfortunately a difficult road. But I think you will be able to connect with those of us that can relate and maybe we can impart some of what we have been through to make your road easier.

Unfortunately in my experience as was stated earlier by you my friend Chineloogbonna, you need to be your own best advocate and that means learning as much as you can and in as many ways as you can. The nice thing about this website is it truly is a community and we can make it what we want by standing by each other and providing that friendship and loving support that can only be found by others who are going through the same thing we are. I can stand by that statement because I am someone who suffers from lupus and I was also a caregiver for quite a while so I can see both sides of the equation as the person I was taking care of had issues I never had to deal with before so I understand the complexity and how easy it is to get overwhelmed. No worries we have you covered.

If I can help you in any way please let me know I will be more than happy to share how I manage and maneuver situations and my life. God bless you and I look forward to speaking with you again soon πŸ™

Looking for support - find it here in this discussion

Posted on

Hi Nette,

Welcome to the crew! I'm glad you found us. I too have had an experience like yours. Symptoms were showing well before my diagnosis  in 2016.

The key is to keep pushing forward, become your own advocate and push an issue if something doesn't feel right ! You know your body the best. Since Lupus is still new to docs its imperative you monitor your health and symptoms  along with the doctor. I keep a Lupus book in my purse. I keep track of pains and issues in it. It helps when you have memory issues, lol. Nothing like forgetting to mention something at the doctor πŸ˜–

Energy, hmmm...I personally do a lot of fruit and veggies ( not as much veggies. I'm still working on those lol), lean meats, lots of good protein. Ive also cut out caffeine, most sugar, and high cholesterol  foods - except for the occasional  indulgence 🀀 I'm also learning to rest, I am a "anal people pleaser  with a sprinkle of OCD " πŸ™„ Being able to rest and allow our bodies to heal is a big deal for Lupus patients.

Hope this helped! Hang in there!😊

Bless Chi

Looking for support - find it here in this discussion

Posted on

Does anyone go to in person support groups for their SLE? I really want to connect with people in my area, but I don’t know how to find them 

Looking for support - find it here in this discussion

Posted on

@Skprine hey friend, I hope this message finds you well.  You know I asked the same question and I unfortunately there is nothing in my area.

I live in Florida and nothing is available.

I love this site and kind of wish we could somehow " Link in" to those that want to be on a chat site.

Maybe we could start a closed group chat on Facebook?  I'm not sure how and if that is possible but if it were, I would love to do it.

Best wishes for your search and have a wonderful evening.

God bless πŸ™

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