Posts Tagged With: disease

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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Double Whammy

I have multiple sclerosis.

I have lupus.

Double whammy.

Not only do I have 1 disease but I have 2. It’s the summer. It’s REALLY sunny. I don’t know which disease (or it could be both) is acting up in my body or why but I do know that I don’t feel good and symptoms are starting to flare up. I was told by my Rheumatologist today that because I have both diseases I may never feel “good”. There will probably always be something happening in my body to cause me discomfort.

Now I know things are never for sure for any reason. Experience tells me that only time will tell what really happens or doesn’t happen. I went almost 8 years believing I only had MS and how I felt was “the way it was” until I was finally diagnosed with lupus 2 years ago and I learned I could feel “A LOT BETTER” than I had been feeling. And you know it’s true. I feel a lot better today than I did 2 years ago. Absolutely. Thank goodness and I am very grateful for that.

BUT…my doctor pointed out that I have been on a physical plateau for awhile and since it had been awhile she was thinking that may be my new baseline. Well OK–but NOT OK. So what happens from here? Isn’t it the unknown that’s so scary? Isn’t it our heads that freak us out too? I hear this and I start thinking, “Well this is it. This is all I have. I don’t ever get to feel better.”–but then what is there if I live with just those thoughts?

AND it’s back to one moment at a time, one hour at a time, one day at a time–whatever it takes to keep the “time” idea really simple. Because right now the summer and the sun are fogging my perspective and making me think that there is a LIMIT TO HOPE. I DON’T BELIEVE THAT! I have a wonderful husband, I have an adorable kitty, I have amazing supportive friends and family, I have a roof over my head, I have AC (THANK GOODNESS!), I have a great car, I have clothes, and the list of HOPE goes on and on.

BUT–I can’t mask it.

I am really struggling…

I’ve been very confused lately. I’ve been functioning better, able to exercise more, be a bit more active, I feel stronger, but YET I still have really bad fatigue, pain is coming back in my joints and especially my hands, I’m getting weird rashes, I get to the point in the day usually where I CRASH and my body is all done, I’m starting to have digestive issues again and I DON’T GET IT! What’s going on with me? Am I getting worse? But I thought I was better? How will I know when the weather is wacky and I’m so darn sensitive to it? And how can anyone really figure out which disease to treat when both diseases have been known to act up exaggeratedly during the hot times of the year????

My Rheumatologist and I had a very in-depth conversation about all of this today and that really means a lot to me that she took the time to talk and listen with me for quite awhile. She was understanding and compassionate but also very direct and to the point and not too harsh about it. I have MS. I have lupus. Double whammy. She confirmed that it’s going to be really hard for me. Will I be able to work again? What will I do now? What can I do now? She’s not really even sure that I’m much better than I was 6 months ago, it’s just that “THINGS ARE DIFFERENT” and so this probably really is my plateau. Perhaps I’d feel much better with only one disease (you know, as if only 1 of these diseases is a cup of tea–they’re all sucky)…but that’s not the case.

REALITY TELLS ME I HAVE MULTIPLE SCLEROSIS AND LUPUS.

Reality HITS me these days. This is it. This is my life. Yes I could be a lot worse. Yes I could be a lot better. But the truth is, I don’t feel good. Will I ever feel “good”?

I will do my best to have hope but right now I AM TRUDGING and the muck is really thick and it is very easy to feel stuck…

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