“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.

*PLEASE READ: A Very Special and Personal Response From a Friend…
Yesterday I posted a Blog asking all of you how you loosen up and lighten up. You can see the Blog post below.
“Looking for suggestions!
How do you loosen up and lighten up? My visits to the Chiropractor have really shown that I need some major help when it comes to mentally loosening up and lightening up! Enough already. I’ve really worked so hard on myself lately and over the past years to help loosen and lighten up more but I still have a long way to go!
So please! Have at it! Would love to see your comments below about how you loosen up and lighten up! I am still so tightly wound it’s going to take more than purple hair, a Spiritual Path, physical recovery, nature, white puffy clouds, my Cleo Kitty, laughter and quality time with my husband, all the awesome people in my life, all the wonderful support in my life, dancing, walking, stretching, reading positive things, listening to positive music and speeches, affirmations, watching positive shows (what are those?), etc.?
ANY AND ALL IDEAS ARE WELCOME! COME ON. DON’T BE SHY!
Thank you all. Hope you have a great week. I’m acting as if it’s going to be a great week and you know, it helped A LOT and today (Monday) was actually a lot better and much more positive and even NICE at times compared to ANY DAY last week.”
**TODAY I RECEIVED ONE OF THE MOST BEAUTIFUL GIFTS I HAVE EVER RECEIVED IN THE FORM OF A RESPONSE/COMMENT, FROM A BEAUTIFUL FRIEND OF MINE NAMED SHELLEY. THANK YOU SO MUCH SHELLEY. YOU MOVED ME IN WAYS I CAN’T EVEN DESCRIBE. YOU ARE TRULY A VERY SPECIAL WOMAN AND I AM HONORED TO KNOW YOU AND CALL YOU MY FRIEND.
PLEASE READ. I HOPE IT CHANGES YOUR LIFE AS MUCH AS IT HAS MINE. I’VE POSTED IT BELOW:
“Hi Nahleen! Well, I can easily find a lot of reasons to be heavy and dark and not loose and light. I could tell myself, I am a sad sad single all alone overworked mother undergoing cancer treatments and surgeries. So many people would take out the violins just for me!! I could get easily sucked in to the undertow of blackness. And have been even when I was doing all the things I was supposed to do. But since my diagnosis I have become a lot lighter. I will try answer your question to the best of my ability.
I laugh at myself. A lot. I let the light of God get in through the cracks. I see my dark dirty hideous patterns and instead of shaming myself for their humiliating ugliness, I laugh at it. I tell on myself. And I tell my secrets.
When I am sad, I cry and if I can’t I just tell people, “I am really sad but can’t cry.” If I am angry, I just acknowledge it. And I keep a light and loving relationship with myself. I say I love you to everything. Myself, my son, my cat, the trees, the food I eat, even people I don’t want to like. I just say it in my head. I say I love you to my hurt back, my surgery site, the doctors, my medication, my hair, my cells, my car, my crazy head, my perception of the world that is most times off. I just keep saying I love you.
And telling on myself.
I love you Nahleen. Thanks for your blog and giving me the opportunity to connect with you. You are beautiful.
Shelley”
THANK YOU AGAIN SHELLEY. I LOVE YOU VERY MUCH.
I LOVE YOU ALL VERY MUCH. THANK YOU FOR BEING IN MY LIFE…
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