Posts Tagged With: nauseous

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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CHRONIC DISRUPTION

CHRONIC DISRUPTIONS

That’s what I consider my chronic illnesses: multiple sclerosis and lupus.

I have decided I need to just call them that.

CHRONIC DISRUPTIONS.

Someone had used that “DISRUPT’ word to describe them to me just recently and it really stuck.  YES.  If anything, they DISRUPT my life and they don’t go away. hence the idea of CHRONIC.  I’d like to say I’m perfect at being able to ignore them or at least NOT EVER let them get to me.  But that would be a LIE.  IF ONLY…

I tend to try to go on with my life (you know: get up in the morning, eat 3 meals a day, brush my teeth, comb my hair, shower, socialize a bit more, do some errands, exercise…things like that) especially as I start to feel better or get some relief and then BOOM!; I’m HIT with the next BIG BANG BAD SYMPTOM or ROUND OF SYMPTOMS.  Not that I ever stop feeling symptoms like fatigue, pain, stiffness, nausea–you name it.  There’s always something going on.  Some are more tolerable than others and there are loads of levels of degrees of the intensity of the discomfort.  It’s different all the time.

And all of it is  COMPLETELY AND UTTERLY UNPREDICTABLE.

With this unpredictability comes the DISRUPTION.  The diseases don’t work out a deal with me about when they are going to start flaring up.  They don’t let me plan my day.  They don’t care if I’m out to dinner with a friend or grocery shopping.  They just HAPPEN.

And that to me is by far the BIGGEST FRUSTRATION.  They are so DISRUPTIVE.  The amount of patience and flexibility I have to have would make me a Super Hero for goodness sakes.  Sooo, I just do the best I can with what I have and what I can do at that moment.  And I also throw temper tantrums, have tons of feelings about it and try not to punch walls.

Most often I just have to stop EVERYTHING.

“YEAH BUT” goes through my head all the time.  “Yeah but I need to make breakfast” or “Yeah but I need to get dressed” or even “Yeah but I need to brush my teeth”.  It doesn’t feel like a PAUSE.  It feels like a STOP.

The DISRUPTION causes an INTERRUPTION in my flow.  What am I talking about?  I have no ability to really Flow.  I have wanted a ROUTINE for years and it FINALLY just occurred to me that I need to give up that idea altogether.  I really just need to know what my Priorities are for me that day, try my best to do those for the day and then IF I can add something else than I will.  Laundry and grocery shopping seem to be the most DISRUPTED.  They take a lot of energy out of me that I either don’t have or I’d like to hold onto for the day.  I don’t like running on EMPTY if I can help it but then again, I CAN’T CONTROL THAT.  There is usually NO WARNING.

I’M CURRENTLY DEALING WITH A DISRUPTION OF DIGESTIVE SORTS.  I believe about a month ago I had mentioned on this Blog that I was fighting a small intestine bacterial infection and was on strong antibiotics for it.  I took the 2 week round of treatment, felt crappy from it (as was expected since it’s a detox) and thought I was done.  I had done this before and towards the end a lot of me was starting to feel much better.  I did HOWEVER feel nauseous towards the end of the treatment and thought it was side effects from the antibiotics.

Come to find out, I SHOULDN’T have stopped taking the antibiotics at that point because feeling NAUSEOUS meant that the treatment was starting to ACTUALLY FIGHT the infection.  That’s what my doctor reminded me of this past Friday after I called him because I had SUFFERED horrible stomach cramps AGAIN.  He said the goal is to be NAUSEOUS.  (I don’t know about you but that’s usually not on my favorite list of GOALS…).  When I’m NAUSEOUS it means I’m starting to actually fight the infection and I need to try to deal with and wait it out.  Once I stop feeling NAUSEOUS, then I will be able to start feeling better.  Once I’m consistently feeling better with no NAUSEA pangs then I can stop taking the antibiotics…

WELL GREAT.  INSERT/SHOVE NEWEST DISRUPTION HERE.

So that’s what I’ve been going through.  The past few days I’ve actually felt nauseous so at least now I know the treatment is working.  And with nausea, comes less energy and the inability to focus, loss of appetite and things like that.  We all know the drill I bet.

AND I just want to point out that it’s not like the body is PROGRAMMED to only accept one DISRUPTION at a time.  Ha!  If only.  I can dream I guess…The reality is that I still have all the other symptoms from both diseases that pop up whenever they seem to want to…

TALK ABOUT OVERWHELMING!!!

I suppose I better stop writing now because I’m starting to feel extra yucky again.  One positive I want to point out is that my lupus and MS seem to be calming down a bit and to be a bit less of an issue these days so there is recovery.  Thank goodness.

ALL OF THEM SCREAMING AT ONCE WOULD DRIVE ME ABSOLUTELY OUT OF MY MIND!  Let’s hope that doesn’t happen…

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