Life With Lupus


This is my first post, I have been a lurker-gathering info and it has helped.Today is a bad day and I need to at least get it all out.
This coming Halloween will be 3 years since my diagnoses of Lupus. I also have psoriasis, osteoarthritis, Sjogren’s, bone spurs in my knees, feet/ankles, shoulders and all through my spine…I started going to my moms RA Dr and the PA there was the one that figured me out and started to “fix” me, originally she put me on a NSAID that helped right away, I felt really good because ALOT of my pain was more manageable but I think it was because I was soooo uncomfortable for so long. It was good for like 6 mos and then they fired the PA. I saw a Dr at that office a few times and he took my NSAID away and put me on prednisone, I took one dose and was a mess. I couldnt sleep, my chest felt like my heart was twisting and my head felt like it was gonna go boom and other stuff. When I told him thats what happened, he told me to take it again and see what would happen. I told him hell no (found out later by another Dr it was allergic reaction). Then he put me on Plaquenil. It was awful, it flared my lupus up so bad, nose and mouth full of sores- tons of side effects, I felt horrible. When I told him he said to keep taking it, it can take up to a month to help. I took it for a month getting more miserable every day, after asking him about what I found when I looked it up, that it can take up to 6 months or more to help. He said yes but I didn’t want to tell you, I wanted to see if it would work-really? I was done with him at that point and I gave up. I stopped going to the Dr, stopped all the meds. Only thing I stayed on was biotin for hair lose/dry, Vit D and Flaxseed oil (helps huge w/dry eye) and weed.
I went without seeing a Dr and tried to manage it myself for almost a year. I just started seeing the original PA that diagnosed me over two months ago, she opened her own practice and I thought she was the shit! Well, I saw her once and she wanted to put me on medical marijuana and treat naturally, I was on board. It took a week to get that done and she wanted to see me back in two months to see how it was working.
Let me add this, my employer asked me to have my FMLA paperwork redone just as I was going back to the PA so on my first visit with her I had it redone. Within three days of the request. I had used my FMLA for lupus in May once, June three times and once in July. First times I had used it. The day after I used it the once in July was when they requested it redone, fine. It wasnt due until Sept. Literately a hour after I turned it into HR, I got written up for just made up stuff, straight to final written warning. Worked there for years and never been in trouble/written up. Funny right? They tried to make the FMLA paperwork a problem and once I had it redone like they asked they find another way to write me up? Three days later they fired me stating the problems I had been written up for three days before had not stopped. They flat out lied. I refused to sign anything (save the lawyer/sue them, I talked to a few lawyers and its my word against theirs so nothing there).
When I went to the PA for my two month checkup and tried to talk to her about maybe going on disability. I have not been worked for close to two months and I feel sooo much better. Not setting in the fluorescent lights all day. I have energy to go to the park, walk around with the bf playing pokemon, have a social life alittle. Not just barely making it through the work day everyday and not having the energy to take care of myself, so many bowls of cereal and fast food cause I just didn’t have it in me (before the bf moved in) my quality of life is actually alot better not working. She f’n told me the reason why I am asking to go on disability is because I am very unhappy with my life and I need to figure out how to fix that. To figure out what would make me happy and steps I need to get there. Not feel like shit everyday?! that was my response. Flat out honest… she said she doesn’t help her patients get on disability, thinks everyone should work somewhat. what? Gave me six weeks to figure out what I was going to do to fix my life and wants me to go back to see her to tell her what my plan is.
So now it was two months with no treatment and now another six weeks? and you are a PA for RA, not a therapist. I am so annoyed and feel defeated.
All I keep thinking about is in Sweden assisted suicide is legal. Why don’t they have it here? We should be able to chose. I am never going to feel good and I am just tired. Exhausted from not getting help, being made worse and barely surviving.
Mind you, I have no health ins so cant really go to another Dr and have just enough to deal with my bills for another month in my savings.
I feel just defeated

I am sorry you been let down by all these doctors .
You are not alone .Few doctors failed to diagnose me with Lupus ,they were very superficial and ignored all symptoms I had for many years .
After 10 years I was nearly dead and I went abroad to get help .
What I try to tell you please do no be put off by this horrible ,doctor “
She obviously doesn’t understand how tired you feel and your real need to take a break from work .
I think you should go back to her free of charge and tell her it’s your right and necessity to go on disability .
Your lupus diagnose gave you this right .

Also you should try different medication .
Plaquenil and Imuran worked well for me but also after long time working full time I felt like I can’t work anymore just few hours a week .
I find great comfort in reading the Bible and praying to the only Father that can understand all the pain and how difficult life in our damaged body is and also we are failed by people who should understand better .

But please put all your faith in God and ask him to come in your life .

Kindest regards

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I’m sure that everyone on here can sympathize with you - I know I can! I also have Sjogren’s with Lupus (and a host of related conditions). It can be very hard to stay positive some days. My advice to you on those days is to curl up with a book, or netflix, and ride it out. One of the wisest things I have heard is that when you do “nothing” you really are doing “something”; you are healing.

As far as disability is concerned, you are entitled to disability and you don’t have to go through your doctor to apply. You can start the process yourself online. You will probably be denied the first time, but most lawyers require a denial letter to take your case. Get the ball rolling! It’s a very long process and will take years.

Meanwhile: eat healthy, try to get some exercise, get plenty of sleep, and take your meds. It will get easier, I promise!

She refuses to see me for free. I dont think I will be going back to her, she is doing nothing for me.
I am not on any meds right now, she refuses to do anything but THC and CBD. They help but not with everything.
I do appreciate your kind words and advice but I am pagan. Please say a prayer for me to your god and I will send positive vibes your way! <3 I ask for guidance daily to my goddesses/gods

It is very hard to stay positive some days, you are right! today was a very tough one
Thank you! I never thought about anything like that being online. I will defiantly look into that!!

Over at the psoriatic arthritis site we call this “the gap”. It’s the period of time when you’re diagnosed, but you’re not on meds that are controlling your symptoms and slowing down the disease. I checked your bio, and it looks like there is a university medical center near you. If you’ve tried there already, you can try another metro area such as NYC.

Living in the gap is tough. It sounds like you’ve tried a few meds so far, without much success. It can take time to find a med or med combo that works for you. And a lot of the meds will take time to work, so patience is required. But I would definitely be looking for a new doctor, with a more aggressive approach.



Should a “gap” last 3 years? with long gaps in between Drs willing to actually treat my disease? I feel like I keep getting blown off and I just think it is because the disease just isn’t understood at all/lack of research. frustrating

university medical center - do you mean Albany Med? its a teaching hospital…i tried to find something other then that and couldnt :frowning:

I am defiantly going to search for a new DR but its hard when you have no health ins

Thank you so much for reaching out to me!! <3


Hey Lady Bloom, welcome! Great to see you getting right down to business here, reaching out to friends.

Seenie from ModSupport

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(Seenie going OT, sorry!)

You are so poised, gracious and accepting!
Some people, though, are not, and that’s the reason for one of our major pieces of site etiquette:

We don’t want to see any members hurt because of religious comments, because once that happens, support, understanding and solidarity in the face of a shared disease erodes. And that’s not what we came here for, right?

Wishing you love and peace and positive energy!


we all have different beliefs, we all need to be kind to eachother. We can do that and still not agree on everything. I truly try to follow that

Wishing you love and peace and positive energy returned!

It can last a long time for some people, which really stinks. If you didn’t like the medical center in Albany, then it might be time to look out of the area. I’ve been really lucky that I didn’t have much of a gap. One year from diagnosis to getting started on a med that made some difference.