Today Is World Lupus Awareness Day!

“I can’t diagnose you with Lupus now but I can tell you that you have enough of the list of Clinical items we look at to diagnose you with it eventually that it may come up for you in the future. I’m so so sorry I can’t diagnose you now. But please PLEASE make sure to keep it somewhere in the back of your mind for the future when things are at your hardest because this will likely come up in the FUTURE. I know you don’t want to hear that but it will be important to remember.”–That’s what my first Rheumatologist drilled into my head 11 years ago in 20012, as I was on the journey to find out what was wrong with me in the first place. I have no doubt she was an Angel sent to help me find out the VERY HARD way that I had Multiple Sclerosis.

8 years later I can tell you that I believe she was also sent to help me FINALLY be diagnosed with Lupus. That was in June 2010.

8 YEARS LATER.

They still didn’t know enough about Lupus even 11 years ago for her to diagnose me. I can remember her apologizing profusely that she wouldn’t be able to give me any answers about my very uncomfortable symptoms that were in her Specialty–such as me having Lupus and me thinking at the time that that was quite alright. I was 26 years old at the time. I didn’t really need to hear about having Lupus. Really. MS was enough.

I didn’t really need to hear about having MS either but I did. That December of 2002 I was diagnosed with MS because I had FINALLY had an MRI and there were lesions on my brain to show that I had MS. There’s a lot more to this story but these days looking back on the traumatic Hell I went through back then, I’m pretty darn sure I had both MS and lupus and that they were flaring up at the same time but MS was the disease that had physical evidence to show people. You could SEE it. There was SOMETHING to prove. MS is also a VERY confusing disease to diagnose BUT at least there are lesions on the brain.

Lupus doesn’t have that. Lupus is even more invisible. It’s the Great Imitator. It’s the Great Mimmicker. There’s pain, there’s fatigue, there’s a brain fog and they all show up in MS–and now I’m learning they are different BUT wow they overlap like crazy. Lupus also affects organs. It affects the body tissue. It affects the mouth and can make it crazy dry along with eyes. It can cause rashes. It is very sensitive in the sun. HOWEVER, it seems like if the body doesn’t CRASH in some way than it’s hard to figure out. All of my symptoms were blamed on the MS. Even more interesting is that I think I’ve had something like Lupus since I was a kid. Imagine treating that as a kid. Yeah I wouldn’t have liked it but it would’ve explained A LOT and I have a feeling I’d be feeling lots better right now.

For me the signs that “something else” was going on in 2010 were that my thyroid acted up, then my eyes got really weird, THEN my liver nearly failed on me and the levels were toxic. That caused me to basically vomit up my ENTIRE BODY. That is the only way to explain it. I don’t vomit. This may be TMI for you but it’s the truth and I’m here to tell you the truth. I don’t vomit. I get extremely nauseous. Vomiting is strange for me. Sooooo, that really should’ve been the big indicator something was off. But no, I thought it was an awful stomach bug. How did I know the difference? Looking back, I was so out of it there’s NO WAY I would’ve known left from right at that point.

So what happened?

MY BODY HIT A WALL and my liver was nearly in failure. Thank goodness I’m so sensitive and my body gave me enough warnings. Thank goodness I listened. Thank goodness I am pushy and stubborn.

In June of 2010 I was severely ill and doing that “vomiting” I talked about earlier. It took 2 MORE MONTHS to be diagnosed with Lupus.

2 MORE MONTHS.

I WAS DIAGNOSED WITH LUPUS IN AUGUST 2010.

THAT IS TOO LONG. What if something else had gone wrong? What if I wasn’t being seen by any medical doctors at the time and tried to tough it out? What if my body shut down on me? These are the kinds of things that run through my brain. I can’t help it.

The most prominent question is this:

WHAT IF THAT ANGEL OF A RHEUMATOLOGIST IN 2002 HAD NOT DRILLED IT SO MUCH INTO MY BRAIN THAT ONE DAY I COULD HAVE LUPUS?! THAT ONE DAY THINGS MIGHT GET AWFUL AND I MIGHT BE FEELING SO TERRIBLE AND NO ONE, AND I MEAN NO ONE, COULD DIAGNOSE ME WITH ANYTHING TO HELP ME FEEL BETTER? WHAT IF I HAD CONTINUED ALONG THINKING I ONLY HAD MS? WHAT IF I HAD NOT SENT MYSELF TO A RHEUMATOLOGIST BECAUSE I WAS AT THE END OF MY ROPE?!

IT SHOULDN’T BE THIS WAY. LUPUS IS A VERY SERIOUS AND DISRUPTIVE DISEASE AND I’M STILL RECOVERING. It was a very special Doctor who helped me 11 years ago when I needed it the most. Without her I wouldn’t have EVEN THOUGHT to bring up Lupus. It’s not a black and white disease. It is all in the greys. And let me tell you, it gets REALLY COMPLICATED when Multiple Sclerosis comes into play.

REALLY COMPLICATED.

And this is why I spread awareness and tell my truth about what I have been through. This is why I believe so much in spreading the word about what I’ve gone through and am so grateful that there are organizations who have established Days like World Lupus Awareness Day. PLEASE. If you aren’t feeling well and you don’t know what’s wrong, keep asking. You know your body. You deserve answers and there is going to be someone out there who can help you. They may not have all the answers or tell you what you want to hear (boy is that the TRUTH) but they can help lead you in the right direction.

AND ONE LAST THING: THANK YOU TO THAT SPECIAL DOCTOR WHO WALKED ME THROUGH THE HARDEST TIME OF MY LIFE 11 YEARS AGO. I AM FOREVER GRATEFUL FOR YOU. YOU GOT ME ANSWERS ABOUT MS AND YOU GOT ME ANSWERS ABOUT LUPUS EVEN THOUGH I HAVEN’T SEEN YOU FOR 11 YEARS.

So please if you are so inclined, spread the word about Lupus. Spread the word about all of these crazy autoimmune diseases. They are all so similar and there is so much more to learn. And please, take care of yourself and listen to your body. You deserve it.

If you have any questions or comments let me know. Let’s talk about this. Let’s spread awareness. No more hiding. The more we know the better off we’ll all be.

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4 thoughts on “Today Is World Lupus Awareness Day!

  1. Hey Nahleen,

    I really appreciate your post. There are so many similarities in our health stories, even if the diseases are different. I think you were VERY lucky to have that doctor. They’re so hard to find and the rheums here are so bad I just see a PM&R. Not sure if I mentioned that when my genetic disease (EDS) reared its ugly head in ’01, I developed a malar rash for months and had a + ANA. The rash went away and so did the + ANA, but a good rheum I saw in CA (who unfortunately misdiagnosed me with fibro), told me a bit of the same story. He said, “I’m confident you do not have Lupus now, but you may get it down the line.” He was just matter of fact about it and I always had it in my head, like you. I do have a genetic connective tissue disorder, but not Lupus. I also had an episode of vasculitis that looked autoimmune in the blood, but may have been viral. That disease is off in the same complements that are involved with Lupus–odd? I think I will always have to be on the watch for autoimmune as those of us with CT disorders can get an overlap–my grandfather developed RA as a result. Well, I think 2 debilitating diseases are enough, right? Lol!

    Thanks for the great message in here. With today’s healthcare system, you better have an imaginary MD after your name.

    Hope you are hanging in there…
    A ❤

    • Nahleen

      HI A,
      I’m now Following your Blog so I hope that means you’ll be writing more soon. Don’t mind me though. I haven’t taken a look at it but I think you have quite a story to tell so I can’t wait to read more about it.
      Thank you so much for your comments here. Wouldn’t it be great to find a bunch of us with chronic illnesses, gather us together and all share our stories? They need to be heard don’t you think? Enough already. We have a lot to say and the rest of the world could benefit. Who better to tell the story but those who are going through it right?
      Wow, sounds like you’ve been on quite a journey yourself. I’ve been thinking a lot about you lately because I’ve been having eyesight issues since last Wednesday evening. I have had them off and on since my MS diagnosis in 2002. Most of them include inability to adjust to light/dark. It’s as if my the image my eye sees is pixelated if you know what I mean. I can’t make up the whole picture. 3 years ago things got even more intense right before my lupus diagnosis because my eyes started going blurry, perception was way off and my ability to adjust to light and dark sucked. It was awful and so very scary. I have so much respect for you. You hang in there. Last Wednesday it kinda started that way again but I jumped on it and called my Ophthalmologist the next morning, went in for an urgent appointment (because I just love having to drop everything to go in and see more doctors–NOT!) and he said no damage had been done on my eyes but that I was definitely showing some sensitivity to light or shall I say insensitivity? Anyway, it was both. He didn’t have much to say to that. We think it might be a medication I was put on for my IBS issues so that’s our newest theory. All I know is it’s terrifying. I want to reach through this computer and give you a big hug right now. You have a lot of courage to even reach out online. I have so much respect for you. I sure hope your eyes can get better. Soooo, not sure what’s up with my eyes because they’re still adjusting. They don’t feel nearly as good today. I have dry eyes so that is a huge part of the problem even though my eyes are taken care of with tear duct plugs and eye drops they still act up.
      To be honest I’m so sick of all of it! Enough already! Chronic illnesses need to leave us all alone.
      There’s my temper tantrum. Anyway, thanks again for commenting on my Blog. It’s always so nice to hear from you. Where do you live if it’s OK to ask? I don’t know what a PM&R is.
      Also, yes, autoimmune diseases don’t like to be alone. They like to have friends unfortunately. Sooooo frustrating.
      Anyway, I’m thinking of you. Take care of yourself. I hope things get better for you.

      hugs,
      Nahleen

      • Aw, thanks for all the nice thoughts. Hugs to you, too! I keep my exact location private to all for various reasons, but I’m in the American desert (big, dry area that SUCKS) and am from Seattle originally–I left at 28 shortly after I got sick more than a decade ago. The climate up there kills my body. I’m a Seattle-type at heart–minus the tree-hugging thing.

        I only post about 3 x month as it is so hard on me, so my blog isn’t super active (aside from the Google crowd) and I just have my little WP group on there. I think we’d all like to live on some island (dry place for me) for the chronically ill. I’ve REALLY had it lately, too–especially as none of my docs really know what my primary disease is, not that loads can be done about it! There are a few specialist, but they’re on the E. Coast and that’s just out!

        So sorry about your vision–I know MS can cause vision issues (as can Lupus). I also have severe dry eye–part autonomic nervous system, part meibomitis, part post-op from corneal surgery. Plugs, Restasis, IPLs for meibomitis–still using lubricating ointment 24/7. My corneal disease (keratoconus) is progressive and bad, but I was in a treatment trial/surgery in LA ($$$) that has halted the progression. If I didn’t have idiots for doctor out here (the desert had terrible healthcare) and was Dx’d in time, I wouldn’t have lost so much vision. So, it is stagnant and is what it is. I’m in a mourning process for that now. I could see 1.5 yrs ago! The Ehlers-Danlos tends to be sort of degenerative in nature and is really just not studied, so little hope for that. It’s genetic, which also doesn’t help. I think there is great hope for autoimmune (which I don’t have, per se) with all the new meds now–not that there is a cure. Well, sending positive thoughts your way!

        Hang in there!
        A ❤

        • Nahleen

          Wow! Sounds like quite a roller coaster for sure! This journey really seems neverending doesn’t it. That’s a lot to go through. I seem to have waves of mourning myself about my health issues. I guess as things come up in life suddenly those issues I thought I had worked through come back to haunt me and I have to work through it yet again. Yes, a dry island would be nice. The humidity is awful for me. I never did like it but my body with its fragility HATES it! Sending positive thoughts your way too! Hope you have a good week.

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