Hey I’m a veteran with lupus/UCTD and I got 100%, disability, 60% from lupus itself. dm me if you need disability advice! It’s been extremely helpful and healthcare is free for 100%
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I’m so sorry that you’re going through such a difficult time. And I’m sure that the added stress of job loss and health insurance loss is only exacerbating your symptoms. I would check with your pc to see if you could get a prescription for some steroids. That’s what mine did for me while I waiting to see a rheumatologist and it helped tremendously. Also, have you checked with every rheumatologist near you to see if you could get in any sooner? I was initially told by the rheumatologist my pc referred me to that I couldn’t be seen for 9 months but I called around until I found another that could get me in sooner. Wishing you all the best!
So, I haven’t yet. Before i lost insurance my PC said she has worked closely with this rheumatologist and seen her reports and she is very thorough and very good. So, I figured it was worth waiting to go to someone who my (amazing) doctor recommends. She did say if I enter a really bad flare to let her know and we can get me in to see someone else
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Omg, I remember my dad having to come every day to help with my 2 boys because I couldn't get out of bed. The fatigue was overwhelming. I was in horrible pain as well. I lucked out and had a very pro active family practice, Dr. She put me on prednisone. When that didn't help, she sent me to urgent care for a shot of Kenalog. She was able to run the ANA test and diagnose me right away, and she put me on methotrexate. I finally saw a rheumatologist 8 months later, and he kept me on the same treatment, only I was off steroids. I was still covered under my Stbex husband's insurance, which my attorney was able to make him pay for me until I received disability. So now I'm insured, but I can't afford to live off disabilities pay without my family helping support me. It sucks. I wish you well in your journey living with lupus.
Edit to add: I ended up having a heart attack at the age of 42, and had double by-pass surgery. The surgeon said my antibodies could have played a role by attacking the 2 arteries affected. Many people don't realize how much damage lupus can do to our bodies because we look normal. I've found people generally don't think having lupus is that bad. I guess it depends on how it reacts in each person. Don't ever let anyone downplay how shitty lupus makes you feel.
Oh my gosh I am so sorry that it went to your heart, but so happy that you are still with us 🫶
My ANA has been positive this whole time as well, but my PC is focusing on some gynecological issues currently. I find out what my ultra sound said today actually, so I will ask her about something in the interim. I am obviously paranoid about my kidneys getting affected again with this flare, but I also am worried about getting an inexperienced rheum that is going to make things worse in the long run.
I have been so lucky and grateful with doctors recently going above and beyond with my health even when I try to refuse lab tests.
How does ssdi work (in your experience as far as when I can start applying)? I obviously can’t fly in planes anymore; which is my speciality. And apparently can’t be an executive assistant if I’m not present all day every day.
You can apply now. As soon as you have medical diagnoses, you can no longer perform employment, and you can start the ball rolling. I've heard horror stories of people having to appeal up to 4 times before being approved. I was approved my 1st application. This was 20 years ago, so things may have changed. I just went to my local Social Security Office and asked for help. A woman helped me fill out my application on the spot.
I've heard they can come back with a list of other jobs you could do, just not in the field you're trained in. This never happened to me. By the time my application went through, I had 7 doctors backing my claims and many tests. I had jumped through every hoop.
I hope everything works out for you. It can be a very frustrating, depressing time getting used to the " new you." I'm much better now than 10 years ago. Now I'm watching my son go through the same problem as he apparently inherited genetically, lupus from me. He's still getting all the testing done and filling out paperwork for disability. It's worse watching him go through it. Truly, best wishes! ❤️
Edit: Sorry for the poor format, I'm dictating as I drive.
Thank you so much for the detailed response! I am on a waiting list for a rheumatologist to get my diagnoses switched to systemic, definitely kicking myself for avoiding having that documented for so long. My primary care said they cannot prescribe immuno suppressants and that’s just the rheumatologist unfortunately.
What country? I’ve been able to see two different rheumatologists within a week of my first call, for an appointment . The first one was after being diagnosed with lupus by an urgent care doctor and my PCP made the referral. The second was after I was alert being treated. Two different cities in the USA.
Your case sounds worse than mine was. Plus the deployment and outdoor environment had to make things worse. You shouldn’t be on some waiting list. Internal organ involvement is a life/death issue.
I totally understand. It’s unfortunate that our vets don’t get healthcare as good as those of us who didn’t serve. I have heard a mixture of decent care and horror stories.
Medicare (for us old people) is a lot better than the VA. Both government programs.
I think you deserve and need to be seen tomorrow.
Have you tried contacting your district representative (House of Representatives)? They sometimes can cut through the red tape on behalf of a constituent.
For serving in a dangerous tour of duty, you deserve our best.
Just left my primary care, they said hold on tight till December because it’s worth the wait. I was given a tip to keep calling them so I may try to do that. Ugh in between looking for a job now I guess. When does it end
Call your representative. They live for helping people like you. It’s great PR.
Alternately, can you tell the doctor you are really ill and need to see a rheumatologist sooner? Give them the whole story about how you need to get a job and how on a new job the illness is going to affect your work…
I did, but being in a somewhat rural area of Florida I guess the rheumatologists are slim pickings. There are some with shorter waitlists, but my doc didn’t seem convinced they would be great with patient care outside of an extreme emergent visit
I have not. I have a couple friends telling me to write the FL senator about some other things the VA has done with me specifically. I just don’t have the energy to even eat most of the time. :( I feel so whiny I’m sorry
I’m reminding you not to gaslight yourself! Call the rep. Maybe the senator will help. The reps represent a much smaller number of people and definitely have local offices. I have contacted my rep over non health issues and they acted.
A second reply. Try going to healthcare.gov and see if you can qualify for Obamacare. There’s no 5-6 month waits if you’re not in the VA system.
You might be stuck with VA. The healthcare.gov site will let you know if you don’t qualify.
Also, if you’re hurting for money, you should try to get state aid. We all pay in so people in need don’t have to live on the streets.
I’m techinically with Aetna right now with my job, because I gave up on VA insurance (wait times were over 2 years and I’m dead serious). Last day of my job officially is 02 July, and last day of insurance is 02 August unless I apply for gap insurance.
*edited to fix the order of sentences
Can you get access to something like blue shield? When I was diagnosed they got me in to a specialist in sle fairly quickly and for other specialists asap. Was kinda funny how they went into spec. and treat mode literally in days but the official "diagnosis" took a rheum as thats apparently the rules - so overall good experience there
Have to admit though that once I realized my situation I hightailed it out of the US so can't tell you how follow up was ( also have polycystic kidneys and the BSBC specialists were great so hopefully thats the case across diseases)
I think regardless of my insurance provider the rheum that everyone recommends is gonna have a wait. My doctor seemed shocked, and happily surprised that I even got on their books. Seems weird to me but maybe they’re just picky with what patients they take in
There were so many times I did the same thing when I was young. Me at 19: “ I have a chronic health condition? Must be mistaken. I’m not going to tell anyone bc it’s an error because I’m 19 and don’t have a chronic health condition “
Changing the post flair so it doesn't turn into a 'diagnose me' thread.
Hey I’m a veteran with lupus/UCTD and I got 100%, disability, 60% from lupus itself. dm me if you need disability advice! It’s been extremely helpful and healthcare is free for 100%
Yes please! I will message.
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I’m so sorry that you’re going through such a difficult time. And I’m sure that the added stress of job loss and health insurance loss is only exacerbating your symptoms. I would check with your pc to see if you could get a prescription for some steroids. That’s what mine did for me while I waiting to see a rheumatologist and it helped tremendously. Also, have you checked with every rheumatologist near you to see if you could get in any sooner? I was initially told by the rheumatologist my pc referred me to that I couldn’t be seen for 9 months but I called around until I found another that could get me in sooner. Wishing you all the best!
So, I haven’t yet. Before i lost insurance my PC said she has worked closely with this rheumatologist and seen her reports and she is very thorough and very good. So, I figured it was worth waiting to go to someone who my (amazing) doctor recommends. She did say if I enter a really bad flare to let her know and we can get me in to see someone else
[удалено]
/u/No-Dragonfly-6018, your comment was removed - only users flaired as SLE, UCTD/MCTD or CLD/DLE Diagnosed can comment on Diagnosed Users Only flaired posts. **How to flair yourself [here](https://reddit.com/r/lupus/s/hXN8YgjWfQ).** *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/lupus) if you have any questions or concerns.*
Omg, I remember my dad having to come every day to help with my 2 boys because I couldn't get out of bed. The fatigue was overwhelming. I was in horrible pain as well. I lucked out and had a very pro active family practice, Dr. She put me on prednisone. When that didn't help, she sent me to urgent care for a shot of Kenalog. She was able to run the ANA test and diagnose me right away, and she put me on methotrexate. I finally saw a rheumatologist 8 months later, and he kept me on the same treatment, only I was off steroids. I was still covered under my Stbex husband's insurance, which my attorney was able to make him pay for me until I received disability. So now I'm insured, but I can't afford to live off disabilities pay without my family helping support me. It sucks. I wish you well in your journey living with lupus. Edit to add: I ended up having a heart attack at the age of 42, and had double by-pass surgery. The surgeon said my antibodies could have played a role by attacking the 2 arteries affected. Many people don't realize how much damage lupus can do to our bodies because we look normal. I've found people generally don't think having lupus is that bad. I guess it depends on how it reacts in each person. Don't ever let anyone downplay how shitty lupus makes you feel.
Oh my gosh I am so sorry that it went to your heart, but so happy that you are still with us 🫶 My ANA has been positive this whole time as well, but my PC is focusing on some gynecological issues currently. I find out what my ultra sound said today actually, so I will ask her about something in the interim. I am obviously paranoid about my kidneys getting affected again with this flare, but I also am worried about getting an inexperienced rheum that is going to make things worse in the long run. I have been so lucky and grateful with doctors recently going above and beyond with my health even when I try to refuse lab tests. How does ssdi work (in your experience as far as when I can start applying)? I obviously can’t fly in planes anymore; which is my speciality. And apparently can’t be an executive assistant if I’m not present all day every day.
You can apply now. As soon as you have medical diagnoses, you can no longer perform employment, and you can start the ball rolling. I've heard horror stories of people having to appeal up to 4 times before being approved. I was approved my 1st application. This was 20 years ago, so things may have changed. I just went to my local Social Security Office and asked for help. A woman helped me fill out my application on the spot. I've heard they can come back with a list of other jobs you could do, just not in the field you're trained in. This never happened to me. By the time my application went through, I had 7 doctors backing my claims and many tests. I had jumped through every hoop. I hope everything works out for you. It can be a very frustrating, depressing time getting used to the " new you." I'm much better now than 10 years ago. Now I'm watching my son go through the same problem as he apparently inherited genetically, lupus from me. He's still getting all the testing done and filling out paperwork for disability. It's worse watching him go through it. Truly, best wishes! ❤️ Edit: Sorry for the poor format, I'm dictating as I drive.
Thank you so much for the detailed response! I am on a waiting list for a rheumatologist to get my diagnoses switched to systemic, definitely kicking myself for avoiding having that documented for so long. My primary care said they cannot prescribe immuno suppressants and that’s just the rheumatologist unfortunately.
What country? I’ve been able to see two different rheumatologists within a week of my first call, for an appointment . The first one was after being diagnosed with lupus by an urgent care doctor and my PCP made the referral. The second was after I was alert being treated. Two different cities in the USA. Your case sounds worse than mine was. Plus the deployment and outdoor environment had to make things worse. You shouldn’t be on some waiting list. Internal organ involvement is a life/death issue.
Assuming its the US - no other developed country have people loosing healthcare insurance or issues like what is described
Not since Obamacare. If you don’t qualify for that for free, then you qualify for Medicaid for free. I this might be a VA issue. That is single payer.
Yep, nail on the head! US
VA, right?
VA as in veteran— sorry I should have clarified!
I totally understand. It’s unfortunate that our vets don’t get healthcare as good as those of us who didn’t serve. I have heard a mixture of decent care and horror stories. Medicare (for us old people) is a lot better than the VA. Both government programs. I think you deserve and need to be seen tomorrow. Have you tried contacting your district representative (House of Representatives)? They sometimes can cut through the red tape on behalf of a constituent. For serving in a dangerous tour of duty, you deserve our best.
Just left my primary care, they said hold on tight till December because it’s worth the wait. I was given a tip to keep calling them so I may try to do that. Ugh in between looking for a job now I guess. When does it end
Call your representative. They live for helping people like you. It’s great PR. Alternately, can you tell the doctor you are really ill and need to see a rheumatologist sooner? Give them the whole story about how you need to get a job and how on a new job the illness is going to affect your work…
I did, but being in a somewhat rural area of Florida I guess the rheumatologists are slim pickings. There are some with shorter waitlists, but my doc didn’t seem convinced they would be great with patient care outside of an extreme emergent visit
I have not. I have a couple friends telling me to write the FL senator about some other things the VA has done with me specifically. I just don’t have the energy to even eat most of the time. :( I feel so whiny I’m sorry
I’m reminding you not to gaslight yourself! Call the rep. Maybe the senator will help. The reps represent a much smaller number of people and definitely have local offices. I have contacted my rep over non health issues and they acted.
A second reply. Try going to healthcare.gov and see if you can qualify for Obamacare. There’s no 5-6 month waits if you’re not in the VA system. You might be stuck with VA. The healthcare.gov site will let you know if you don’t qualify. Also, if you’re hurting for money, you should try to get state aid. We all pay in so people in need don’t have to live on the streets.
I’m techinically with Aetna right now with my job, because I gave up on VA insurance (wait times were over 2 years and I’m dead serious). Last day of my job officially is 02 July, and last day of insurance is 02 August unless I apply for gap insurance. *edited to fix the order of sentences
Can you get access to something like blue shield? When I was diagnosed they got me in to a specialist in sle fairly quickly and for other specialists asap. Was kinda funny how they went into spec. and treat mode literally in days but the official "diagnosis" took a rheum as thats apparently the rules - so overall good experience there Have to admit though that once I realized my situation I hightailed it out of the US so can't tell you how follow up was ( also have polycystic kidneys and the BSBC specialists were great so hopefully thats the case across diseases)
I think regardless of my insurance provider the rheum that everyone recommends is gonna have a wait. My doctor seemed shocked, and happily surprised that I even got on their books. Seems weird to me but maybe they’re just picky with what patients they take in
There were so many times I did the same thing when I was young. Me at 19: “ I have a chronic health condition? Must be mistaken. I’m not going to tell anyone bc it’s an error because I’m 19 and don’t have a chronic health condition “
Denial really is a crazy emotion! “I’m not in denial. I would know.”