Medical Just diagnosed with lupus

[Muttly]

So maybe 20 years ago, saw a rheumatologist for chronic pain type issues. I didn't get much out of that. I did get put on duloxetine and that helped with the pain to some degree. And things improved and I decided it had all been in my head. For a long, long time I've gotten sick more often than most people. I just wrote it off to me being stressed because of life and PTSD. I've tried to doctors sometimes about issues, like GI stuff and never felt I got good answers and just moved on. A huge part of my brain decides nothing was ever wrong in the first place and I ignore what's happening with my body.

Recently though (last 3 to 6 months), I haven't been able to ignore. The time between being "healthy" keeps decreasing and the degree of sickness has been getting worse. At some point I just stopped feeling well at all. Probably if I didn't have Tat (my husband) I would have tried to keep slogging on, but feeling him get more and more worried got to me. And I've always been able to work not matter what and I seem to have lost that ability.

Anyway, I worked with my doctor and surprisingly quickly (compared to how things usually go for me) got diagnosed with Lupus. I see the specialist on Monday to start on meds. And I've gone through so many emotions- anger, fear... and maybe now I'm hitting sadness? Well, not right now. I'm just numb, right now. I'm spending a lot of time in a numb state, and maybe part of that is how exhausted and unhealthy I feel.

Lupus is a chronic autoimmune disease, there is no cure. The good news is, it can be managed to a fair degree. It looks like life long med management and there is risk to basically all of your organs if you don't manage it. And it effects are systemic, so it's not just pain and fatigue but issues with skin, lungs, GI, etc. I will admit, it's a relief to actually have a diagnosis. All the stuff I or doctors ignored, it turns out was real.

My brain has started poking around at the thought about how my PTSD plays into this. How much sooner would I have gotten diagnosed without the PTSD and thought distortions from my abuse? But what good is it even thinking about that? It changes absolutely nothing.

And a part of me is feeling hugely guilty. I'm missing work and not as on top of things at work, so I'm letting down my coworkers. I'm distant from all my friends lately. I'm not walking the dogs. And Tat... he has fibro. And I'm the wage earner for us. I can't have something that's going to mess that up. I can't make life harder for him. (None of this is coming from him). I'm supposed to be the caretaker. I'm the one who takes care of others. And..I've had my time when my mental health collapsed and when I had my back surgery where people helped me. I've used up my help quotient. I'm supposed to be helping others. And yeah, yeah I know that's a distortion but I can't change it and changing it would take energy I don't seem to have... and that thought makes me feel like a huge whiner. Sigh. And now I feel like I've mentally backed myself into a corner.

And... then there's this thought... I have pushed through so much. What I grew up in (abuse, learning disabilities, etc), the PTSD, etc. I just keep going. I keep being strong. I saw a stat, only 37% of people with Lupus work and 7% of them are part-time. So some stupid, whiny part asks if now I can finally stop. I can rest. And I know people are going to tell me I'm wrong, but I hate that part. I truly do.

 

[Freida]

And a part of me is feeling hugely guilty.

And I'm the wage earner for us. I can't have something that's going to mess that up. I can't make life harder for him. (None of this is coming from him). I'm supposed to be the caretaker. I'm the one who takes care of others. And..I've had my time when my mental health collapsed and when I had my back surgery where people helped me. I've used up my help quotient. I'm supposed to be helping others.

this made me kinda teary because I remember these feelings so well. That feeling of being a failure, a burden, being the person whose paycheck paid most of the bills, the one who was going to be the reason we lost our house because I couldn't push thru enough to get my ass up and moving, the one who wasn't keeping up her end of the bargain - which was taking care of people all the time to make up for the small amounts of time they helped me and on and on and on

and yep, my illness caused a lot of my colleagues to work 12 and 14 hour shifts because I wasn't there, or I made mistakes because I couldn't concentrate so someone had to watch me, and on and on and on.

Here's what I've learned. We have roles that we play - but those are the roles WE set. Other people allow us to be in those roles because it's easy for them. When the time comes that we have to change our roles it can feel like the world is ending because our purpose changes. We are the ones in pain, unable to function, always at the doctor. Our minds can't handle our bodies turning against us and making us be someone else. Someone weak or useless that everyone will abandon because we are the ones who always fight thru.

until we can't.
Then the only way to care for others is to care for ourselves first

So some stupid, whiny part asks if now I can finally stop. I can rest. And I know people are going to tell me I'm wrong, but I hate that part. I truly do.

Yep. I get it.
My docs and therapists and friends and hubby couldn't get thru my thick head that the only way to "beat" the disease was to accept that the treatment had to be rest. Which I hated because rest was the enemy of my life
And ya, I also hated that part that wanted that rest, craved it, needed it, and finally had an excuse for it.

I won't lie - it took a long time to give in to that part but once I started letting it run the show things got easier. I still battle the lazy guilt, but not as much because I've learned that pushing myself is just another form of self harm. So, some days I do nothing - and instead of feeling guilty I remember I'm just treating an illness.

Which is a whole lot of blah blah blah to tell you that people with chronic illnesses get it. Everything you are feeling is normal (horrible, but normal). You aren't a failure or a burden. You are a person with a disease that you don't deserve but ended up with anyway. You are still lovable, you are not broken, you are not making other peoples lives harder.

You are still you - just a bit different version of you.

Read this - learn this - live this.
spoon theory

 

[Muttly]

I'm so close to crying reading what you wrote @Freida And I know it makes sense but... the cost to stopping and "giving in" and resting and taking care of myself has always seemed so high. A thought that came up, is that it cost my mom her life and of course I can't really know that. In fact, I'm pretty damn sure I couldn't have saved her, but she wouldn't have had to die in the slow, miserable way she did. And my brother is alive as far as I know but from the small glimpses I get from the outside, it seems like a fairly unhappy life. And I know I can't "save" him either but he thinks I could make it better and maybe I could. But I made that choice, to save myself and walk away from my family and there was a cost.

And... in the past, giving up always meant suicide. That was the only way I could see to stop fighting against everything. To rest. I truly saw no other way out. And for a lot of years, I didn't take that option because of other people. And now, as lousy as lupus and some things are, I want to live. I have Tat and have built a life and I want to live that life. But I still don't see how it would work. I just go and go until I break, and then I put the parts and pieces back together and go again. That's all I know. That's all I've ever known.

And now I am crying.

And another voice says, what if giving up proves "them" right. All the people who have seen me as broken and weak. Or seen me as prey. Seen me as a disappointment. As long as I'm fighting for a future, I'm not that.

 

[PamelaS]

I'm so close to crying reading what you wrote @Freida And I know it makes sense but... the cost to stopping and "giving in" and resting and taking care of myself has always seemed so high. A thought that came up, is that it cost my mom her life and of course I can't really know that. In fact, I'm pretty damn sure I couldn't have saved her, but she wouldn't have had to die in the slow, miserable way she did. And my brother is alive as far as I know but from the small glimpses I get from the outside, it seems like a fairly unhappy life. And I know I can't "save" him either but he thinks I could make it better and maybe I could. But I made that choice, to save myself and walk away from my family and there was a cost.

And... in the past, giving up always meant suicide. That was the only way I could see to stop fighting against everything. To rest. I truly saw no other way out. And for a lot of years, I didn't take that option because of other people. And now, as lousy as lupus and some things are, I want to live. I have Tat and have built a life and I want to live that life. But I still don't see how it would work. I just go and go until I break, and then I put the parts and pieces back together and go again. That's all I know. That's all I've ever known.

And now I am crying.

And another voice says, what if giving up proves "them" right. All the people who have seen me as broken and weak. Or seen me as prey. Seen me as a disappointment. As long as I'm fighting for a future, I'm not that.

So maybe 20 years ago, saw a rheumatologist for chronic pain type issues. I didn't get much out of that. I did get put on duloxetine and that helped with the pain to some degree. And things improved and I decided it had all been in my head. For a long, long time I've gotten sick more often than most people. I just wrote it off to me being stressed because of life and PTSD. I've tried to doctors sometimes about issues, like GI stuff and never felt I got good answers and just moved on. A huge part of my brain decides nothing was ever wrong in the first place and I ignore what's happening with my body.

Recently though (last 3 to 6 months), I haven't been able to ignore. The time between being "healthy" keeps decreasing and the degree of sickness has been getting worse. At some point I just stopped feeling well at all. Probably if I didn't have Tat (my husband) I would have tried to keep slogging on, but feeling him get more and more worried got to me. And I've always been able to work not matter what and I seem to have lost that ability.

Anyway, I worked with my doctor and surprisingly quickly (compared to how things usually go for me) got diagnosed with Lupus. I see the specialist on Monday to start on meds. And I've gone through so many emotions- anger, fear... and maybe now I'm hitting sadness? Well, not right now. I'm just numb, right now. I'm spending a lot of time in a numb state, and maybe part of that is how exhausted and unhealthy I feel.

Lupus is a chronic autoimmune disease, there is no cure. The good news is, it can be managed to a fair degree. It looks like life long med management and there is risk to basically all of your organs if you don't manage it. And it effects are systemic, so it's not just pain and fatigue but issues with skin, lungs, GI, etc. I will admit, it's a relief to actually have a diagnosis. All the stuff I or doctors ignored, it turns out was real.

My brain has started poking around at the thought about how my PTSD plays into this. How much sooner would I have gotten diagnosed without the PTSD and thought distortions from my abuse? But what good is it even thinking about that? It changes absolutely nothing.

And a part of me is feeling hugely guilty. I'm missing work and not as on top of things at work, so I'm letting down my coworkers. I'm distant from all my friends lately. I'm not walking the dogs. And Tat... he has fibro. And I'm the wage earner for us. I can't have something that's going to mess that up. I can't make life harder for him. (None of this is coming from him). I'm supposed to be the caretaker. I'm the one who takes care of others. And..I've had my time when my mental health collapsed and when I had my back surgery where people helped me. I've used up my help quotient. I'm supposed to be helping others. And yeah, yeah I know that's a distortion but I can't change it and changing it would take energy I don't seem to have... and that thought makes me feel like a huge whiner. Sigh. And now I feel like I've mentally backed myself into a corner.

And... then there's this thought... I have pushed through so much. What I grew up in (abuse, learning disabilities, etc), the PTSD, etc. I just keep going. I keep being strong. I saw a stat, only 37% of people with Lupus work and 7% of them are part-time. So some stupid, whiny part asks if now I can finally stop. I can rest. And I know people are going to tell me I'm wrong, but I hate that part. I truly do.

I understand. I was diagnosed with lupus and fibromyalgia 24.5 years ago. 9/11 was the last straw that put me in bed. I hear every single word you’re saying. I was the one… and I could no longer do it. I was flat on my back and I could not even lift my head off the pillow. My life had become so crazy and uncontrollable. It took me nine years to transition from the one in charge, the one taking care of everything, to the one taking care of me. Until I made that shift, all I did was make it worse, more time in bed, more intense pain, more sick. I was so strong willed and determined and set in my ways of taking care of everything and taking responsibility for everything, that I made it impossible to move forward.
I understand every single word.

My biggest concern for you is, does your government provide for disability? It took me two years and a lot of documentation and an interview where my brain could not answer their questions in order to fail enough to be disabled. Lupus was not on the list of things you could be disabled with at the time. I hope and pray that it is now for you. Like Freida said, we have to start taking care of ourselves first. In my opinion, being diagnosed with lupus is also a trauma, along with all of the other traumas that have led to PTSD.

I apologize for my harshness and directness. I could beat around the bush, but that would only take more time for you to be cared for. Please know that I am here for you in whatever way I can support you. I can answer questions. I can pray. I can encourage. I can walk alongside you. Please let me know how I can support you. I understand more than you know. If it doesn’t offend you, I would like to be praying for you. I have learned so much over nearly 25 years. I have plenty of experience and wisdom to pass on to you. I’m looking forward to seeing you in a better place, moving forward in a new way, allowing yourself to be the way you are now and loving yourself anyway.

 

[Freida]

another voice says, what if giving up proves "them" right. All the people who have seen me as broken and weak.

you walk away from them
It's gonna suck, but it's the only way.

I was surrounded by people who only saw me a super successful, overachiever, blah blah. Then I broke and became weak. And those people? Treated me exactly like that - broken and weak. They believed I had just given up, that I wasn't trying hard enough, that I was just lazy. No good to anyone anymore, not worthy of being in their world, the whole dramatic blah blah blah.
I know you've followed my journey with the VA, who actually said those things to me -- there's nothing wrong with you, you just aren't trying hard enough, you are just faking, blah blah.

Ok, so lets say that those things are true, in their belief system. In their minds anyone can just suck it up and move forward or they are lazy. When someone becomes ill and can't do what they expect does it prove them right? Yep. In their belief system anyway.

But that doesn't make them right in the world of chronic illness
In my world you have busted your behind to try to keep functioning, keep moving forward, keep kicking ass - in spite of ptsd and lupus! Yes, they are just giving you the lupus label, but the symptoms have been there all along. And you've tried to live up to the expectations of them in spite of it.

Now you are in a whole new world, filled with people who don't judge by the standards of them. They judge by the standards of what it's like to have a chronic illness, to be limited by your own body, to need to actually, wait for it, take care of themselves. This world doesn't have the luxury of making idiotic comments or judgements by people who have never faced these kind of challenges.
They have no idea what they are talking about because their belief system only works in their world
Not in ours.

So which world do you want to live in?
The one where you are surrounded by people who have no idea what you are experiencing and judge you anyway?
Or the one where you are surrounded by people who know exactly what you are experiencing and will love and care for you just as you are?

And no - it's not going to be that easy because it means changing a whole lot of ingrained thinking habits put in your head by them
But it can be done.

But I still don't see how it would work.

Same way it always has - you making choices to succeed.
You are just changing what "succeed" means
Instead of trying to fit into someone else's nonsense about what or who you should be you get to be the person you want to be. The one who fits into this box

and now, as lousy as lupus and some things are, I want to live. I have Tat and have built a life and I want to live that life.

instead of the box created for you by people who don't really matter because you no longer live in their world..

 

[PamelaS]

you walk away from them
It's gonna suck, but it's the only way.

I was surrounded by people who only saw me a super successful, overachiever, blah blah. Then I broke and became weak. And those people? Treated me exactly like that - broken and weak. They believed I had just given up, that I wasn't trying hard enough, that I was just lazy. No good to anyone anymore, not worthy of being in their world, the whole dramatic blah blah blah.
I know you've followed my journey with the VA, who actually said those things to me -- there's nothing wrong with you, you just aren't trying hard enough, you are just faking, blah blah.

Ok, so lets say that those things are true, in their belief system. In their minds anyone can just suck it up and move forward or they are lazy. When someone becomes ill and can't do what they expect does it prove them right? Yep. In their belief system anyway.

But that doesn't make them right in the world of chronic illness
In my world you have busted your behind to try to keep functioning, keep moving forward, keep kicking ass - in spite of ptsd and lupus! Yes, they are just giving you the lupus label, but the symptoms have been there all along. And you've tried to live up to the expectations of them in spite of it.

Now you are in a whole new world, filled with people who don't judge by the standards of them. They judge by the standards of what it's like to have a chronic illness, to be limited by your own body, to need to actually, wait for it, take care of themselves. This world doesn't have the luxury of making idiotic comments or judgements by people who have never faced these kind of challenges.
They have no idea what they are talking about because their belief system only works in their world
Not in ours.

So which world do you want to live in?
The one where you are surrounded by people who have no idea what you are experiencing and judge you anyway?
Or the one where you are surrounded by people who know exactly what you are experiencing and will love and care for you just as you are?

And no - it's not going to be that easy because it means changing a whole lot of ingrained thinking habits put in your head by them
But it can be done.

Same way it always has - you making choices to succeed.
You are just changing what "succeed" means
Instead of trying to fit into someone else's nonsense about what or who you should be you get to be the person you want to be. The one who fits into this box

instead of the box created for you by people who don't really matter because you no longer live in their world..

Amen Freida! You and I speak the same language because you and I have walked a similar road. I trust you. Anyone who has not walked the road of chronic illness does not get it. Similar to how people who haven’t been through what we have gone thru don’t get PTSD.

Muttly, it is a challenging situation, but it is not hopeless. Freida and I are here for you. Please reach out any time. You don’t have to go through this alone.

 

[Muttly]

Sorry for the absence, a lot has happened. I guess I kind of shut down for a while.

So, the doctor with the rheumatologist was awful. He came in and asked why we were meeting. I gave him a high level summary assuming this was just a question to get us started. Instead he stated he didn't think I had Lupus and basically said my doctor shouldn't have sent a referral. I offered to talk about my symptoms and he was not interested in listening. He stated other labs should have been done. When I stated that one of the labs he named off was done, he relooked, saw it but then went right back to saying I don't have lupus. Basically I'm not sick enough according to him. I was worried Tat was going to come unglued. I was quite ill and just wanted to be done, as it was clear this doctor wasn't going to listen to me. At that point, I saw no point in continuing.

Anyway, I sent my doctor an update about what happened and asked what I can do. She was amazing and got me in the next day. Tat came too and we talked and for now, she's treating me. We are managing symptoms and going to remeet in a few weeks. I tested positive for flu at that appointment too. I took the rest of the week off work and mostly slept. The pneumonia was bad, but honestly in a lot of ways the flu was worse. I am better and back at work, but I have a bad cough I can't resolve. My breathing isn't really right either. I have another doctor appointment in two weeks and I'm trying to not go to the doctor before then but I don't know. If my breathing/cough get worse I will have to.

Tat has been amazing and been doing more around the house. My doctor stressed right now, my focus needs to be on rest and I'm actually doing that. It's weird and I'm struggling with guilt. I asked my work about going down to part-time and they said if I do, I lose my health insurance or have to pay for insurance out of pocket. That's just not an option. I'm really disappointed in them. Tat is trying to find a job that will give us health insurance. I appreciate he's trying, but I suspect I'm stuck for a while. I also worry about him doing too much. He's managing his fibro well, but still. He doesn't need to take on too much. Long term, things are looking better. Tat got accepted into grad school. If he sticks with that programs (there's still a few schools we haven't heard from), he will have medical insurance that covers both of us.

I do feel like after a long time of just being ... numb or disengaged or something, I am now mentally more present. I'm not sure what that's about, but it's nice.

 

[PamelaS]

Sorry for the absence, a lot has happened. I guess I kind of shut down for a while.

So, the doctor with the rheumatologist was awful. He came in and asked why we were meeting. I gave him a high level summary assuming this was just a question to get us started. Instead he stated he didn't think I had Lupus and basically said my doctor shouldn't have sent a referral. I offered to talk about my symptoms and he was not interested in listening. He stated other labs should have been done. When I stated that one of the labs he named off was done, he relooked, saw it but then went right back to saying I don't have lupus. Basically I'm not sick enough according to him. I was worried Tat was going to come unglued. I was quite ill and just wanted to be done, as it was clear this doctor wasn't going to listen to me. At that point, I saw no point in continuing.

Anyway, I sent my doctor an update about what happened and asked what I can do. She was amazing and got me in the next day. Tat came too and we talked and for now, she's treating me. We are managing symptoms and going to remeet in a few weeks. I tested positive for flu at that appointment too. I took the rest of the week off work and mostly slept. The pneumonia was bad, but honestly in a lot of ways the flu was worse. I am better and back at work, but I have a bad cough I can't resolve. My breathing isn't really right either. I have another doctor appointment in two weeks and I'm trying to not go to the doctor before then but I don't know. If my breathing/cough get worse I will have to.

Tat has been amazing and been doing more around the house. My doctor stressed right now, my focus needs to be on rest and I'm actually doing that. It's weird and I'm struggling with guilt. I asked my work about going down to part-time and they said if I do, I lose my health insurance or have to pay for insurance out of pocket. That's just not an option. I'm really disappointed in them. Tat is trying to find a job that will give us health insurance. I appreciate he's trying, but I suspect I'm stuck for a while. I also worry about him doing too much. He's managing his fibro well, but still. He doesn't need to take on too much. Long term, things are looking better. Tat got accepted into grad school. If he sticks with that programs (there's still a few schools we haven't heard from), he will have medical insurance that covers both of us.

I do feel like after a long time of just being ... numb or disengaged or something, I am now mentally more present. I'm not sure what that's about, but it's nice.

Muttly, thank you so very much for sharing your positives, your wins! Be sure to take time to celebrate them and cherish that you’re doing better. I will be praying that the insurance issue gets taken care of so that you can take care of your body the way it needs.

I had to go through a few doctors that said it’s in my head or there’s nothing wrong with me or… before I actually found a doctor who believed me, and he has been treating me for nearly 25 years. Nearly died a few times. But I have survived. And thanks to divine healing, I am doing so much better. My brain is actually working again! I used to hit myself on the forehead when I could not get the words out. My children finished my sentences, because they knew what I wanted to say.

Be gentle and kind to yourself. Please update us as things progress.

 

[Freida]

Rheumatologist are supposed to be the first stop for fibro, but I've heard story after story of people who show up with something other than RA so I've avoided them like the plague. The one time I went the guy was a total ass. So there's that

I've had better luck with GPs who also treat fibro - maybe that's an option for you? They seem to have a better grasp of the bigger picture.

 

[PamelaS]

Rheumatologist are supposed to be the first stop for fibro, but I've heard story after story of people who show up with something other than RA so I've avoided them like the plague. The one time I went the guy was a total ass. So there's that

I've had better luck with GPs who also treat fibro - maybe that's an option for you? They seem to have a better grasp of the bigger picture.

Thanks for sharing Freida. Hope all of this is helping you Muttly. It takes time to adapt to chronic care. We’re in this for the long haul, not just a sinus infection.
My rheumatologist has been treating me for lupus and fibro, as well as osteoporosis and kidney disease that have resulted from the medications. I have been blessed with an excellent doctor, but there are many who are in over their heads. I fired all of my dozen or so doctors and now stick with only my GP and my rheumatologist. Running around to every specialist began to rule my life. Was out for one doctor appointment after another nearly every day of the week. Just not necessary. It becomes a full time job and I become a professional patient. No more. But you have to find doctors you can trust and that can take a while. Wishing you well as you continue opening the door to your care providers and closing the doors of any that you can’t trust.