Posts Tagged With: Double Whammy

I’m On The Right Track Baby, I Was Born To Survive

Thank you Lady Gaga for those incredible words!

“I’m on the right track baby, I was born to survive.”–Wow. Profound for sure.

Lady Gaga’s song, “Born This Way” inspires me to get up in the morning. It helps me to keep on moving. It’s been over a month since I’ve posted anything and I think a lot of that is because I have had so much up here in my mind and yet not a lot of words or perhaps too many words to process it all. It’s been quite a month. We traveled to lovely peaceful Cambria again and were able to get away for a few days. I had a wacky week beforehand running around (as much as someone who doesn’t like to run and isn’t able to really run with MS and lupus can), then was on the trip and was able to take some deep breaths and let go, and then when I came back I crashed.

Life started getting really hard again when I was back home. The sun started getting more intense as June traveled through its days and the temperatures climbed higher and my body reacted right away to it. As I’ve mentioned so many times before, the summer is the hardest time for me. The heat makes my MS act up and the sun makes my lupus act up and they act up together and that creates what I keep hearing from everyone I encounter the oh so technical term and experience of a “Double Whammy”.

GOOD TIMES ALL AROUND.

Um actually…NO. NOT GOOD TIMES.

This has happened to me every summer since at least right before my MS diagnosis in December 2002. Summer kicks my butt. I feel like a different person. I wonder if everything has gone “kerflooey” with my body and this is it. This is the big bad ATTACK of all attacks and it’s a “loopty-loop rollercoaster” (phrase given to me by my fabulous Chiropractor last week and I’m stealing it because it is a perfect description) and I’m done for. Except…that doesn’t really happen. What happens is I feel crappy. I start to get the “heavies” a lot more which remind me of heavy fatigue that feels like a dental x-ray vest thingie from the ’80s and that to me is a HUGE reminder of RED FLAGS GALORE to slow down and pretty much stop EVERYTHING. That includes using my brain too much because even overstimulation is a problem. Plus I start to tingle more, my muscles get tighter and achier and have a harder time releasing, I feel more weak, I get the MEGA BLAHS, I just feel gross, my cognitive symptoms really start acting up more than ever and I have a hard time focusing and dealing with numbers (used to be so good at numbers and math in high school and college and THANK GOODNESS I didn’t go into Accounting or something when I was being encouraged to because I’d really be at a loss now), I most often feel like the life is being sucked out of me and I could go on. Then I have these “better” times where I feel like I could get through. I still don’t feel as good as when all temperatures are cooler and my body finally has a real chance to cool down but there’s a calmer plateau to land on for a bit. Then it starts up again and it’s not usually the same as before but different so I have no idea what’s going on EVER.

The point is, life with my poor inflamed body is EXTRA EXTRA HARD.

EVERYTHING TAKES SOOOOO MUCH MORE EFFORT.

ACK!

So right now I’m trying to keep things more simple. Ha! Turns out life is still happening and things still need to get done but I need to go with what my body needs and the lines get blurry there. What does my body need? Does it need more rest? Does it need my mind to stop worrying about how I’m feeling and get a break? Does it need to be cooler? Sometimes it doesn’t like the cooler temperatures because then the lupus starts acting up more and making my joints hurt. Sooooooooo, I’m constantly stuck between a rock and a hard place and there is always a compromise of sorts. There is never a time my whole body (including mind) are happy.

And that’s why I share this Lady Gaga song with you. So much of this song is about acceptance of self. And what’s even more interesting about her is that lupus runs in her family and there has been so much talk that she has lupus but she says it’s borderline lupus. Who knows what that means but to me this song means even more because maybe just maybe she might GET IT.

This video may be just a BIT, yeah JUST A BIT, theatrical and over the top but the words say it all. The message is so clear.

I AM WHO I AM AND I NEED TO LOVE ME.

I’M BEAUTIFUL…I’M ON THE RIGHT TRACK (even if it doesn’t feel like it right now)…AND I WILL SURVIVE.

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The Path of Least Resistance

Just posted this on Facebook and thought you all might like to get an update as well…

“*A PERSONAL WRITTEN MONOLOGUE TO CATCH YOU UP ABOUT ME–THERE IS A NEWER MORE ENHANCED NAHLEEN IN TOWN:

Well today has been quite a ME DAY of rest and simplicity and I think it’s the first time EVER that I have sincerely ACCEPTED it. My body and mind were desperate to stop and breathe and I let them.

2 weeks ago (feels like an eternity–can’t believe it’s only been 2 weeks) I met with an Attorney about Appealing The Private Long Term Disability Company’s Termination of my Disability Claim. I found out I’d be/been (highly likely) judged by my online Social Media presence as a “capable” writer on my Blog, as an active Facebook participant and as someone who Tweets quite a bit on Twitter (RETWEETING–because that’s so hard to do– and helping people mostly when it came to weather and disaster news mostly), so that’s probably one of the main reasons for the Termination of Coverage….I WRESTLED with this for a week and was so incredibly devastated about it. Alllll of my feelings from the past 10 years since the MS diagnosis to Present had surfaced and the flood gates opened.

Sure my case was still highly DEFENSIBLE because HELLO I have MS and LUPUS and that DOUBLE WHAMMY IS BAD ENOUGH! HOWEVER, I felt censored, punished and like some sort of criminal for trying to have some sort of life and COMMUNITY presence in my life. And OH was I tired of FIGHTING…sooooo tired. Last week (a week after the Attorney meeting) I FINALLY had gathered up the guts to tell me, the Attorney and the whole world that I had made the decision NOT to APPEAL and it has changed ME and MY LIFE. The details will be discussed on my BLOG at a later date when I’m ready. My Blog will NOT be taken down and it will tell my whole truth now more than ever. THIS WILL BE MY ADVOCACY. THIS WILL BE MY VOICE AND HOPEFULLY INCLUDE THE VOICE OF OTHERS.

I still have to finish up the final paperwork with my Attorney so that should be interesting because she wasn’t convinced I was done and wanted to talk to me in a week. WELL, that WEEK has FINALLY arrived and I will tell you that I am in a much better place. THE BLOG is too important to me. TELLING MY STORY AND GETTING IT OUT THERE IS TOO IMPORTANT TO ME! That is how I raise awareness. That is how I’m reaching others with common issues and health problems and people in general.

I will also mention here that in the past month my path has lead me to a true Chiropractic healer who is helping me feel better in ways I have been desperately trying to get my other doctors to address AND in the past 2.5 weeks this healing journey I’m on has connected me with a Specialist who NOT ONLY was once a Social Worker, but she is now both a Psychologist and a Psychiatrist and she is reaching me in my mind in ways that no other therapist has EVER been able to do.

My point is, this past month has changed my life. I feel like I’m finally starting to become who I’m meant to be. I HAVE FLIPPED TO A NAHLEEN WHO HAS BEEN INSIDE ME AND IS NOW BEING FREED! Not only am I walking towards lightness but I am walking AWAY from darkness.

So to end this written monologue I will share pieces of quotes from some very famous people of our pasts and I guess it’s now a Nahleen quote because it makes so much sense to me, “I have chosen the path of least resistance, and that has made all the difference.”

Thank you for reading…you all mean so much to me.”

To ALL of you who have commented, sent me personal emails and joined me on this Blog path, I apologize for my lack of communication lately. I will respond as soon as I can. You are very much on my mind and I have not forgotten you.

Love,
Nahleen

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