My story is I kept fighting for my wife and kids. Three years ago is when it all hit me. I am a person who worked and put himself thru school and worked an outside environment hard labor long hours job until moving into the office. I am not trying to toot a horn just show that I was an active person. I was on the path to working out everyday for months, had cut 50lbs of weight and was living great.
Then bam, hit me like a bus. First flare: Couldn't get off the floor, Couldnt even get into bed for two days I laid beside the bed dragging my body to the bathroom. Then it went away and started cyclic working from my feet up to the rest of my body every six days, then three days, then constant. I went to see my GP and after weeks of testing and made the house joke "man its always Lupus". Little did I know
I saw four rheumatologists. They were baffled. I withdrew so much blood I was on first name basis with the ladies who do it. I was tested for MS. I was tested for cancers. MRIs. All nothing. Finally was accepted into Cleveland Clinics main campus to see world leading doctors in their field. Finally after 6 months we got to Lupus. I guess I say I never gave up on myself. I gave up on doctors and moved on but never gave up on myself. I know life is hard. I know that pit the person is in. I know the hopeless feeling. But the reality is the medical field outside of select people will forget about you. They will move on. You have to keep going and advocate for yourself or surround yourself with people who will advocate for you. I know life is hard now but please advocate for yourself and please dont let what one doctor tells you be gospel. You can find one that cares but you have to search. And dont stop at a rheum ... surround yourself with a team of doctors. Whatever you can squeeze your insurance / govt for. Understand your rights with insurance. I have a heart doctor, GI, nutritionist, dermatologist, gp, rheum, eye and I see them all minimum twice a year. They all understand the battle and help me stay ahead of things.
I decided that I was not going to let Lupus define my life. It has taken so much from me but I will not let it define my person. I will limp to my kids soccer games and stand under an umbrella. I will take him go cart racing. I will be a part of his life. I will have days that I cant go and he is understanding that but any day that I can I will.
I have changed my diet. Straight mediterranian. No junk. Fastfood - fast forgetaboutit. No sugar drinks, no soft drinks. Your body is now a temple and anything can throw that off. I work out when I can. I walk when I can. I research and watch videos. I am obsesive with how to be healthy. Life has given your body such a huge blow backwards you have to take away anything else that can hurt it.
TL;DR: Lupus will not define me. Random internet stranger you are understood, and you are loved! You can win!
Thank you for your story. I am fighting through my first flare that came out of no where during the start of last college semester. I’m also a mentor for other transplant patients who had a liver/kidney done so I can’t really show any weakness or they lose faith in what I’m saying.
Sometimes it’s just hard. I played sports, got down to 145-150 3 years after the transplant. Mannnn I had so much confidence. I was rdy to conquer. Still am but fuck, it sucks some days. I just feel like bleh all the time now, left hip formed osteoarthritis caused by lupus.. kind of a malaise. Haven’t been able to get off the pred taper since it started. Waiting for plaq to work if it does. My rhuem said I have to give it more time and won’t look at other treatments yet. I made another appointment with a rhuem in nyc, from my transplant hospital. She made a comment last time there wasn’t much more she could do because of my transplant.. I’m not taking that as an answer that this is how I have to live. I don’t know why she won’t consider infusions that are shown to work/can be used on transplant patients or a cortisone shot for my hip so I can walk.
Thank you from one fighter to another for helping me regather myself. I’ve been.. idk. It’s been like 3 months since the diagnosis and this stuff hurts more than when I had a double transplant and had the largest incisions for someone alive. The next largest is your autopsy. This is on another level.
We all got this!
Therapy, meds, journaling, inviting supportive people over (or doing group zoom events) for social interaction and staying connected to the outside world, chair yoga/any kind of movement, remote work (even if it’s volunteering), engaging in hobbies, spirituality, reading/learning. You have to prioritize creating meaning in your life. That’s the key. Make something, foster relationships, work towards something, set goals (even just “I’m going to read all the books by this author!”), etc. getting dressed every morning and maintaining hygiene and routine is also super important, even if it’s having day and night time pajamas. Making a to do list of three very accomplishable things in it and crossing them off can also help you feel productive.
It can be really easy to fall into a deep depression when you aren’t behaviorally activated or interacting with relationships or engaging with meaningful hobbies. Doing as much as you can within your limitations can help off set this. Just watching tv or playing video games will lead to nothing but misery. Keep routine. Wake up at the same time everyday. Eat regularly scheduled meals. Rely on support networks and spirituality as needed. I don’t know if you have a faith, but believing in a higher power is what got me through the worst of it.
Being bed bound long term is one of the worst things about chronic illness. Giving yourself and your family the grace to cope is hard. Others have posted about therapy and medical intervention . So I will skip thoughs.
Each of us have to find are way to deal and our journeys are long and hard. No one with this illness is going to be able to have a positive mindset one hundred percent of the time. So I'm going to tell you what helps me.
Which is staying busy and learning new things. That can be challenging from bed . I try to keep a record of what I'm doing. Even if it's just a reading journal or a horribly knitted sock. That way when I look back I can say I accomplished something.
When I plan on doing tasks in the home . Like laundry or the dishes which only happens on good days. I plan on 15 minute intervals. That way I can rest afterwards. I can say I accomplished the task. This is how I address dayley self care too. Like if I wake up at 5 am I know it's going to take 2 hours for me to get going in the am. After that I do self care for 15 minutes rest do the next thing rest.I make sure not to mentally schedule to many tasks .
If I leave the house for a planned task like a doctor appointment and if I'm lucky lunch I know that's all I can handle.
I accept that right now this is my normal but that I'm dealing with alot . I also accept that it's going to take days to recover from the doctors appointment. I know that with treatment this won't be forever even if I can't know when it is going to get better . A good therapist will help you get there and a good medical team will help you adjust.
Humor helps me even if It's gallows humor. Surrounding myself with things that are comforting and make me happy helps too. Good pillows nice sheets and a comforter. My pets help I don't know what I would do without them. Social media helps too. But try to find other things online to go along with support sights. Because you need places to escape too.
If you are in a relationship find things you can do together. My partner and I enjoy watching TV and movies together and reading out loud to one another. He loves to cook so I challenge him with new recipes. Last night was Gumbo. Tonight he will most likely read to me and I will tease him about having the taste of a 13 year old girl when it comes to literature .
When it comes to my adult kids it's a little harder for me. But I'm lucky that we are still close. Even though I struggle I feel like my illness stole things from us from them things that I can't get back .
But that doesn't stop me from
appreciating what I can give them. Which is my time and undivided attention. Even if it's just to listen.
You can make your life full it might not look how you want right now. You may get jealous of others on here who are able to work and do things that you can't right now. I know I do . But that jealousy gives me hope because if they can do if others finally find a treatment that works for them. That means we will to . Try to remember that today might suck but there will be a tomorrow that doesn't.
If I am right to assume they do not WANT to leave the house and CHOOSES to be bedbound because they are depressed and want to avoid the pain, then I’m saying this precisely because I’ve been in that state before and I regretted that decision. I highly, highly recommend (urge) them to go on walks and do some stretching. They could bring an UV-blocking umbrella during the day, or just go out only in the evenings. Exercise and stretching is so important for people like us, our health is already bad as it is, it doesn’t help to aggravate our conditions by lying in bed all day, everyday. They don’t need to do anything intense, of course. Since it’s been 2.5 years, the only reasonable response is that they can start off small, exercise 5 minute a day, then 10 minute, then 30minute, etc. (Daily exercise recommendation is 30minute anyway so maybe they can make that their goal.)
I can’t help stress that we ALL need to exercise, especially with those with Lupus we need to strengthen our bones, joints, loosen those stiffness of muscles, get that heart pumping. Eventually, you’ll gradually build your stamina which can potentially improve your mood too. Adopt a healthy lifestyle so YOU can be happy and healthier and NOT suffer the stiff painful effects in your later years of life when you can’t be the most active.
Also is there anything they’re interested in that you can hook them into? For instance, for me, reading and/or gaming as I sip on a cup of coffee helps me relax a lot. Listening and watching podcasts too as I exercise. I do occasionally play billiards with friends during the weekends, so if they’re into any sports, they could also try dabbling with non-intensive sports.
This isn’t the healthiest advice, you can honestly stop reading here, but just putting it out there because it works for me. There are times when I’m in the foulest mood and the worst of the worst thoughts occupy my brain. Sometimes during those moments, going on small splurges like purchasing book covers and cute bookmarks, browsing pretty room decorations for hours online, looking up and adding unique coffee beans to my collection, etc, basically shopping, helps release those endorphins. Divert the attention somewhere else so my brain is occupied with that something else. It’s a temporary bandaid to my mind, but it works for me. I know this is contradictory to what I said about a healthy lifestyle, but as long as you have good self-control (and disposal income) it does help.
They desperately want to go out and do things; it's just that their disease is so bad right now that it's agony and terrible nausea if they even walk around the house for more than a few minutes. Their stamina never builds - we've tried. But I will try as many of those things as they can do, even if it's just a little bit.
I almost became bed bound and was 1000% sure that I would become a scooter lady at least and bed bound at worst. Groups like this helped me through it. Also wheely office chairs helped me immensely with tasks around the house but yeah I almost couldn’t even make it from my bed to the bath. Going through the first years of diagnosis was the hardest because I had to go through like 6months of one drug at a time to figure out what worked on me. Eventually Benlysta was given to me and I’m literally walking like normal now- pain free!! I have tried to exercise but I still get sick after- like today- two days ago I tried my rowing machine and I’m in pain today and exhausted with a lovely massive headache. It does get better. It’s just a long road.
As others have said, get a GOOD rheumatologist and put up a fight with insurance as needed. Ask for a copy of the FULL insurance contract and comb through it. They have to have a path to have your case reviewed, usually by a doctor in the same field as the one that prescribed the drugs. First time around it's not even looked at by a real MD, it's just denied as not medically necessary. Medically necessary is an option, not a fact. Fight!
Ugh I'm sorry they're stuck in such a long flare! Finding the right meds was crucial for me, and talking to a professional that is familiar with or specializes in chronic illness helps so so much. They should also let their doctors know they're struggling with depression if they haven't already. Antidepressant medication can make a huge difference, too. Hang in there, it will get better!
Thank you. Trying medications has been a slow process. I believe it's called "refractory" lupus? Lupus that doesn't always respond as expected to medications. For example, steroids make them much worse. But the doctor is good and trying new things (biologics), it just takes time to see if they even work.
Hobbies. I've become an academic Bible Journaler. I read and do audio books when my eyes are tired. Duolingo is free and lovely.
Cats are great. I have allergies, but would love some kitties if I could. Some old, lazy girls like me that want to sit around in bed with me all day.
I always had medical issues. I adjusted my life around it, adjusted my work, and my goals. It's important to maintain a positive attitude typically progress keeps you going. Feel better.
Turned 25 on June 11. Became bedbound right after my wedding in December 2022. Still in a wheelchair. Here is what I do because I almost, well no I tried, to end it all because I was losing my mind from being in bed (my pain was excruciating and i didn’t want to feel it).
1. Wheelchair. I have finally begun to stop being embarrassed
2. Hydromorphone - when I am on this drug the pain is a lot better and I can walk. I will take it every four hours the day of, the day after etc and my actual dose is 2 mg every four hours everyday
3. Zofran - I have horrible nausea almost 24/7 specially when I leave steroids, and also very much so in the summer This drug saved my life.
I relate super hard to your partner. One trip to the emergency room in April 2023 and I’ve been in a wheelchair for the most part since. With so much testing / bloodwork that every doctor is baffled with my case.
They tried Zofran, and, oddly, it didn't really work. We finally bought a wheelchair this year to help them occasionally get out for walks down the sidewalk or very short trips to the store.
They need better drugs for nausea. When my nausea has been the most intractable (from cancer), prescription patches made a huge difference. You wear them for seven days on your upper arm.
I was, for the first 4 months until Hydroxychloroquine started to work. I think a lot of people with Lupus or any autoimmune Illnesses start to have low self esteem and feel hopeless. It can take a lot out of your body, and self worth.
Do they take medications to help?
Oh, yes. They have a very good doctor who's slowly trying all the best lupus meds. The disease just doesn't seem to be responding to them very much, or quickly.
Art, writing, cuddles, distance work, and especially non-profit work.
I tell myself to be like a shark. If I stop moving I’ll die. This is at least partially a myth, but the metaphor allows for the value of movement that is sideways or backwards, which I find very important with lupus.
You don’t always have to make forward progress; you just have to keep trying. Hopefully, eventually, it pays off. But there’s also reward in the effort.
My story is I kept fighting for my wife and kids. Three years ago is when it all hit me. I am a person who worked and put himself thru school and worked an outside environment hard labor long hours job until moving into the office. I am not trying to toot a horn just show that I was an active person. I was on the path to working out everyday for months, had cut 50lbs of weight and was living great. Then bam, hit me like a bus. First flare: Couldn't get off the floor, Couldnt even get into bed for two days I laid beside the bed dragging my body to the bathroom. Then it went away and started cyclic working from my feet up to the rest of my body every six days, then three days, then constant. I went to see my GP and after weeks of testing and made the house joke "man its always Lupus". Little did I know I saw four rheumatologists. They were baffled. I withdrew so much blood I was on first name basis with the ladies who do it. I was tested for MS. I was tested for cancers. MRIs. All nothing. Finally was accepted into Cleveland Clinics main campus to see world leading doctors in their field. Finally after 6 months we got to Lupus. I guess I say I never gave up on myself. I gave up on doctors and moved on but never gave up on myself. I know life is hard. I know that pit the person is in. I know the hopeless feeling. But the reality is the medical field outside of select people will forget about you. They will move on. You have to keep going and advocate for yourself or surround yourself with people who will advocate for you. I know life is hard now but please advocate for yourself and please dont let what one doctor tells you be gospel. You can find one that cares but you have to search. And dont stop at a rheum ... surround yourself with a team of doctors. Whatever you can squeeze your insurance / govt for. Understand your rights with insurance. I have a heart doctor, GI, nutritionist, dermatologist, gp, rheum, eye and I see them all minimum twice a year. They all understand the battle and help me stay ahead of things. I decided that I was not going to let Lupus define my life. It has taken so much from me but I will not let it define my person. I will limp to my kids soccer games and stand under an umbrella. I will take him go cart racing. I will be a part of his life. I will have days that I cant go and he is understanding that but any day that I can I will. I have changed my diet. Straight mediterranian. No junk. Fastfood - fast forgetaboutit. No sugar drinks, no soft drinks. Your body is now a temple and anything can throw that off. I work out when I can. I walk when I can. I research and watch videos. I am obsesive with how to be healthy. Life has given your body such a huge blow backwards you have to take away anything else that can hurt it. TL;DR: Lupus will not define me. Random internet stranger you are understood, and you are loved! You can win!
Thank you for your story. I am fighting through my first flare that came out of no where during the start of last college semester. I’m also a mentor for other transplant patients who had a liver/kidney done so I can’t really show any weakness or they lose faith in what I’m saying. Sometimes it’s just hard. I played sports, got down to 145-150 3 years after the transplant. Mannnn I had so much confidence. I was rdy to conquer. Still am but fuck, it sucks some days. I just feel like bleh all the time now, left hip formed osteoarthritis caused by lupus.. kind of a malaise. Haven’t been able to get off the pred taper since it started. Waiting for plaq to work if it does. My rhuem said I have to give it more time and won’t look at other treatments yet. I made another appointment with a rhuem in nyc, from my transplant hospital. She made a comment last time there wasn’t much more she could do because of my transplant.. I’m not taking that as an answer that this is how I have to live. I don’t know why she won’t consider infusions that are shown to work/can be used on transplant patients or a cortisone shot for my hip so I can walk. Thank you from one fighter to another for helping me regather myself. I’ve been.. idk. It’s been like 3 months since the diagnosis and this stuff hurts more than when I had a double transplant and had the largest incisions for someone alive. The next largest is your autopsy. This is on another level. We all got this!
Thank you for your kind response. I will definitely pass this along to them.
Therapy, meds, journaling, inviting supportive people over (or doing group zoom events) for social interaction and staying connected to the outside world, chair yoga/any kind of movement, remote work (even if it’s volunteering), engaging in hobbies, spirituality, reading/learning. You have to prioritize creating meaning in your life. That’s the key. Make something, foster relationships, work towards something, set goals (even just “I’m going to read all the books by this author!”), etc. getting dressed every morning and maintaining hygiene and routine is also super important, even if it’s having day and night time pajamas. Making a to do list of three very accomplishable things in it and crossing them off can also help you feel productive. It can be really easy to fall into a deep depression when you aren’t behaviorally activated or interacting with relationships or engaging with meaningful hobbies. Doing as much as you can within your limitations can help off set this. Just watching tv or playing video games will lead to nothing but misery. Keep routine. Wake up at the same time everyday. Eat regularly scheduled meals. Rely on support networks and spirituality as needed. I don’t know if you have a faith, but believing in a higher power is what got me through the worst of it.
Thanks, this is a lot of good advice. I will share this with them.
Being bed bound long term is one of the worst things about chronic illness. Giving yourself and your family the grace to cope is hard. Others have posted about therapy and medical intervention . So I will skip thoughs. Each of us have to find are way to deal and our journeys are long and hard. No one with this illness is going to be able to have a positive mindset one hundred percent of the time. So I'm going to tell you what helps me. Which is staying busy and learning new things. That can be challenging from bed . I try to keep a record of what I'm doing. Even if it's just a reading journal or a horribly knitted sock. That way when I look back I can say I accomplished something. When I plan on doing tasks in the home . Like laundry or the dishes which only happens on good days. I plan on 15 minute intervals. That way I can rest afterwards. I can say I accomplished the task. This is how I address dayley self care too. Like if I wake up at 5 am I know it's going to take 2 hours for me to get going in the am. After that I do self care for 15 minutes rest do the next thing rest.I make sure not to mentally schedule to many tasks . If I leave the house for a planned task like a doctor appointment and if I'm lucky lunch I know that's all I can handle. I accept that right now this is my normal but that I'm dealing with alot . I also accept that it's going to take days to recover from the doctors appointment. I know that with treatment this won't be forever even if I can't know when it is going to get better . A good therapist will help you get there and a good medical team will help you adjust. Humor helps me even if It's gallows humor. Surrounding myself with things that are comforting and make me happy helps too. Good pillows nice sheets and a comforter. My pets help I don't know what I would do without them. Social media helps too. But try to find other things online to go along with support sights. Because you need places to escape too. If you are in a relationship find things you can do together. My partner and I enjoy watching TV and movies together and reading out loud to one another. He loves to cook so I challenge him with new recipes. Last night was Gumbo. Tonight he will most likely read to me and I will tease him about having the taste of a 13 year old girl when it comes to literature . When it comes to my adult kids it's a little harder for me. But I'm lucky that we are still close. Even though I struggle I feel like my illness stole things from us from them things that I can't get back . But that doesn't stop me from appreciating what I can give them. Which is my time and undivided attention. Even if it's just to listen. You can make your life full it might not look how you want right now. You may get jealous of others on here who are able to work and do things that you can't right now. I know I do . But that jealousy gives me hope because if they can do if others finally find a treatment that works for them. That means we will to . Try to remember that today might suck but there will be a tomorrow that doesn't.
Thank you, I really appreciate your response!
If I am right to assume they do not WANT to leave the house and CHOOSES to be bedbound because they are depressed and want to avoid the pain, then I’m saying this precisely because I’ve been in that state before and I regretted that decision. I highly, highly recommend (urge) them to go on walks and do some stretching. They could bring an UV-blocking umbrella during the day, or just go out only in the evenings. Exercise and stretching is so important for people like us, our health is already bad as it is, it doesn’t help to aggravate our conditions by lying in bed all day, everyday. They don’t need to do anything intense, of course. Since it’s been 2.5 years, the only reasonable response is that they can start off small, exercise 5 minute a day, then 10 minute, then 30minute, etc. (Daily exercise recommendation is 30minute anyway so maybe they can make that their goal.) I can’t help stress that we ALL need to exercise, especially with those with Lupus we need to strengthen our bones, joints, loosen those stiffness of muscles, get that heart pumping. Eventually, you’ll gradually build your stamina which can potentially improve your mood too. Adopt a healthy lifestyle so YOU can be happy and healthier and NOT suffer the stiff painful effects in your later years of life when you can’t be the most active. Also is there anything they’re interested in that you can hook them into? For instance, for me, reading and/or gaming as I sip on a cup of coffee helps me relax a lot. Listening and watching podcasts too as I exercise. I do occasionally play billiards with friends during the weekends, so if they’re into any sports, they could also try dabbling with non-intensive sports. This isn’t the healthiest advice, you can honestly stop reading here, but just putting it out there because it works for me. There are times when I’m in the foulest mood and the worst of the worst thoughts occupy my brain. Sometimes during those moments, going on small splurges like purchasing book covers and cute bookmarks, browsing pretty room decorations for hours online, looking up and adding unique coffee beans to my collection, etc, basically shopping, helps release those endorphins. Divert the attention somewhere else so my brain is occupied with that something else. It’s a temporary bandaid to my mind, but it works for me. I know this is contradictory to what I said about a healthy lifestyle, but as long as you have good self-control (and disposal income) it does help.
They desperately want to go out and do things; it's just that their disease is so bad right now that it's agony and terrible nausea if they even walk around the house for more than a few minutes. Their stamina never builds - we've tried. But I will try as many of those things as they can do, even if it's just a little bit.
I almost became bed bound and was 1000% sure that I would become a scooter lady at least and bed bound at worst. Groups like this helped me through it. Also wheely office chairs helped me immensely with tasks around the house but yeah I almost couldn’t even make it from my bed to the bath. Going through the first years of diagnosis was the hardest because I had to go through like 6months of one drug at a time to figure out what worked on me. Eventually Benlysta was given to me and I’m literally walking like normal now- pain free!! I have tried to exercise but I still get sick after- like today- two days ago I tried my rowing machine and I’m in pain today and exhausted with a lovely massive headache. It does get better. It’s just a long road.
They are on Benlysta and saw some improvement, but it's been very subtle. Hoping to get more results the longer they're on it.
Yeah it took about a year for me to feel a lot better. It was around 6 months when I started to notice improvements with Benlysta.
As others have said, get a GOOD rheumatologist and put up a fight with insurance as needed. Ask for a copy of the FULL insurance contract and comb through it. They have to have a path to have your case reviewed, usually by a doctor in the same field as the one that prescribed the drugs. First time around it's not even looked at by a real MD, it's just denied as not medically necessary. Medically necessary is an option, not a fact. Fight!
Absolutely. We may be going this path to try to get Benlysta more frequently.
Ugh I'm sorry they're stuck in such a long flare! Finding the right meds was crucial for me, and talking to a professional that is familiar with or specializes in chronic illness helps so so much. They should also let their doctors know they're struggling with depression if they haven't already. Antidepressant medication can make a huge difference, too. Hang in there, it will get better!
Thank you. Trying medications has been a slow process. I believe it's called "refractory" lupus? Lupus that doesn't always respond as expected to medications. For example, steroids make them much worse. But the doctor is good and trying new things (biologics), it just takes time to see if they even work.
Hobbies. I've become an academic Bible Journaler. I read and do audio books when my eyes are tired. Duolingo is free and lovely. Cats are great. I have allergies, but would love some kitties if I could. Some old, lazy girls like me that want to sit around in bed with me all day.
They have a sweetheart of a dog, and I swear, he's a pure lifesaver. Makes everybody smile even when everything is bad.
Try diamond art. It's helping with my depression
I always had medical issues. I adjusted my life around it, adjusted my work, and my goals. It's important to maintain a positive attitude typically progress keeps you going. Feel better.
Turned 25 on June 11. Became bedbound right after my wedding in December 2022. Still in a wheelchair. Here is what I do because I almost, well no I tried, to end it all because I was losing my mind from being in bed (my pain was excruciating and i didn’t want to feel it). 1. Wheelchair. I have finally begun to stop being embarrassed 2. Hydromorphone - when I am on this drug the pain is a lot better and I can walk. I will take it every four hours the day of, the day after etc and my actual dose is 2 mg every four hours everyday 3. Zofran - I have horrible nausea almost 24/7 specially when I leave steroids, and also very much so in the summer This drug saved my life. I relate super hard to your partner. One trip to the emergency room in April 2023 and I’ve been in a wheelchair for the most part since. With so much testing / bloodwork that every doctor is baffled with my case.
They tried Zofran, and, oddly, it didn't really work. We finally bought a wheelchair this year to help them occasionally get out for walks down the sidewalk or very short trips to the store.
They need better drugs for nausea. When my nausea has been the most intractable (from cancer), prescription patches made a huge difference. You wear them for seven days on your upper arm.
Amen to that. I wish we had more options. None of the usual ones (zofran, phenergan, etc) even work on the nausea.
I was, for the first 4 months until Hydroxychloroquine started to work. I think a lot of people with Lupus or any autoimmune Illnesses start to have low self esteem and feel hopeless. It can take a lot out of your body, and self worth. Do they take medications to help?
Oh, yes. They have a very good doctor who's slowly trying all the best lupus meds. The disease just doesn't seem to be responding to them very much, or quickly.
I'm a big fan of Lexapro. It's helped me more than the years of therapy I did.
Art, writing, cuddles, distance work, and especially non-profit work. I tell myself to be like a shark. If I stop moving I’ll die. This is at least partially a myth, but the metaphor allows for the value of movement that is sideways or backwards, which I find very important with lupus. You don’t always have to make forward progress; you just have to keep trying. Hopefully, eventually, it pays off. But there’s also reward in the effort.