YES THAT’S RIGHT FOLKS! TIME TO CELEBRATE! I HAVE TAKEN A WALK EVERY DAY FOR A FULL YEAR!
YES, A FULL YEAR!
I AM WRITING IN ALL CAPS BECAUSE IT’S WORTH IT! I’M SO EXCITED!
I JUST COULDN’T HIDE IT!
And no I will not break out into a Pointer Sisters song even though I’m tempted to.
I HAD TO SHARE THIS WITH YOU ALL!
TIME TO CELEBRATE!
AND USE EXCLAMATION POINTS!
YAY!
!!!!!!!!!!!!!!!
Um yeah hi ILLNESSES!
Yeah you multiple sclerosis, lupus, IBS and any other physical issue associated with my body that causes discomfort. I’M TALKING TO YOU!
Why is it that when I CRASH into FEELING CRAPPY mode it takes no time AT ALL usually to get to that place BUT it takes a bazillion years longer to RECOVER, FEEL BETTER and HOPEFULLY MORE LIKE MYSELF?!
Here’s the other part of that:
Why is it that when I’m RECOVERING I may not actually get back to where I was but a different place? It may not be a worse place mind you, but a DIFFERENT PLACE?
CONSISTENCY OF BETTER WOULD BE NICE.
I know I know. I’ve been asking for this for years and it still hasn’t happened BUT I’M STILL GOING TO RANT ABOUT IT FROM TIME TO TIME!
DANG IT!
I’VE SO HAD ENOUGH OF YOU MAKING ME FEEL CRAPPY! NO MORE! YOU’RE ALL DONE! GO AWAY! (Yes I know it was probably more side effects from a poisonous medication yet I still have the same feelings about it–after all I am trying to have a life).
And you’re still here with me and I’m still recovering…WITH YOU.
Back to resting…to feeling sad…to feeling frustrated…to feeling relieved…to be feeling like I’m turning the corner to me again.
The key word being:
AGAIN…
Tried a new nasal spray twice in 3 weeks.
This was supposed to be cool–as cool as nasal sprays and meds can be…(YEAH RIGHT!)
It’s a combo of 2 nasal sprays I already take. The idea was to go down 1 medication and have 1 less co-pay. Sounds promising right?
WRONG!
Felt crappy the first time from it but I had too much going on in and around my body to know if that was it. Plus why would I think it was that if it was 2 of the same meds but in 1 mix? My doctors sure won’t believe me when I tell them.
Yesterday I was tired so I took the day to rest. It was nice. I thought perhaps I should try the combo nasal spray medication again and see how I do since I was feeling much better (yes in retrospect I agree that I didn’t have the best timing…).
UMMM HMMM…
Not good. Started feeling extra odd and a lot of confusing symptoms and sensations that were crappy. That’s nothing new. With all the stuff I have going on in my body it’s not unusual. So I thought perhaps my body was more than just tired and was starting to flare up from MS and lupus…
DON’T THINK SO!
Was up most of the night with some of the strangest aches, weakness and digestive discomforts I’ve ever had. This was too much. My body HAS calmed down a bit which is nice and most often it doesn’t wake me up and keep me up in the middle of the night anymore. When I’m feeling better I’ll have to celebrate that! Right now NO.
SOOOOO, no new combination nasal spray medication for me…
My body is still a bit of a mess and it’s been almost 24 hours since I’ve taken it.
NOT COOL! VERY FRUSTRATING! I DON’T WANT TO TAKE MEDICATIONS THAT MAKE ME FEEL WORSE. I HAVE DONE THAT IN THE PAST AND I AM SOOOO DONE WITH THAT!
GRRR!!!
Makes me wanna HULK SMASH something…THAT IS…when I feel better…
DID I MENTION IT’S HARD TO EXPRESS ANY BIG EMOTION WHEN FEELING CRAPPY?!?!
Yes I said ANY BIG EMOTION…
So for now I write this to you. Thanks for reading. Had to get it out somehow…
Guess I should go rest again.
HARRUMPH!
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
Last week I almost DROPPED my Blog altogether due to legal advice given to me. It appears that social media is hindering those of us with Disabilities. Apparently if those of us with Disabilities (as if we asked for them) use the internet and “look capable” than we must be able to ….FILL IN THE BLANK HERE… Needless to say I was NOT a happy person. This Blog has become a Community for me. Not only have I been able to Say What I Need to Say BUT I am opening up a place for others to join me.
THIS IS NOT JUST MY BLOG. THIS IS OUR BLOG.
To be honest, I am not ready to write about last week’s awfully traumatic experience (for me) just yet. I am worn out from wrestling with myself about the entire subject. The best part is:
I WILL CONTINUE TO SAY WHAT I NEED TO SAY AND I WILL NOT HIDE.
I have found that music is incredibly healing and I feel a need to Share another song that has meant a lot to me on my journey with chronic illness over the years. Thank you John Mayer for this song. I heard your words loud and clear and I continue to HEAR them.
Here’s John Mayer’s song, “Say What You Need To Say”. Also as an added bonus it looks like this song/video was made for a movie in 2007 called “The Bucket List” with Morgan Freeman and Jack Nicholson. I hope you enjoy the song as much as I do. It is definitely one of my theme songs.
I’m BACK and I am so happy to be here. I have quite a story to write about my personal hell of a week very soon but I think Bonnie Raitt describes it best for me personally and for US ALL right now during these hard times. Boston my heart is with you. Nahleen my heart is with me.
I’M SO HAPPY TO BE BACK I CAN ALMOST HUG YOU BLOG!!!! OH BLOG HOW I’VE MISSED YOU! I’VE MISSED YOU ALL!
At least a year ago a good friend of mine referred to Bonnie Raitt and this beautiful song. I think it’s been my theme song ever since. Thank you KF. Thank you Bonnie Raitt. And now I ask you to watch and listen. I have a feeling a lot of you can relate to this song.
I WILL BE BACK SOON!
I can’t wait!
Oh and remember WE WILL NOT BE BROKEN!
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.
Heel 2nd Toe. Heel 2nd Toe. Heel 2nd Toe.
That’s what I had to chant to myself (and will need to TRY to do and REMEMBER to do from now on) and guide myself to do as I did what my Chiropractor called, “drunk walking” (because it’s easy to lose my balance when it’s so new) down the street to train my body how to walk correctly and in the right alignment. Apparently my walking alignment is way off so I get to do what feels really hard to do. And so AWKWARD. A friend of mine loves using the word “Awkward” so I hope she appreciated me using it here in this post. ANYWAY–When I’m walking I’m not supposed to be using my Big Toe to guide my walking. I’m supposed to use my 2nd Toe next to the Big Toe and also focus on my hips to guide my leg out in front of me to land on my Heel and with the foot turned in (only what it seems like to me–it’s actually not in…it’s just not too far out and walking like a duck anymore…) and that’s my newest exercise. Weirdest part is that when I stand “right” and look in the mirror what FEELS so wrong actually does look RIGHT.
I’M RE-LEARNING HOW TO WALK AGAIN.
WEIRD.
It’s hard to train a body to move differently after it has been doing probably the same movement for almost 36 years….
So I’m trying to be patient. He had me take a walk up and down the block doing that. I asked him if the residents on the street where his office is ever stop in and ask him what is going on in here and why are there people doing all kinds of strange movements walking down the street. He said NO but he’s sure they talk about it amongst themselves and try to figure it out. “Keeps their minds going…”, he chuckles.
I bet. So I did just what he asked me to do. Of course there were people out and about. Don’t mind me. Just walking totally off balance… It was a beautiful sunny California spring day. The birds were chirping. There was a lovely breeze blowing through the leaves. Flowers have been in full bloom. I was sure EVERYONE ever was staring at me but I’m guessing they weren’t. And if they were, I hope they had fun watching me. I didn’t look as wobbly after awhile but I was walking really slowly almost in a walking meditation and really focusing on what I was doing.
AND YOU KNOW WHAT?
My overall body felt much better walking the “correct” way. I was surprised. As much as my hips started aching (who knew hips were used so much with walking?), certain muscles in my legs that I didn’t know existed started yelling at me, I kept going. I’d let myself stop, take a break and shake it all out but I’d start up again. It really did slow me down and it was quite relaxing at times…Definitely could be a meditation if it wasn’t so distracting at too. Sometimes I’d be distracted too and find that I was back to my old walking so I’d start up again. Going that slow I was able to see the colorful vibrant flowers I walked by, to see more birds flying around me because I wasn’t moving so fast, a butterfly and to REALLY HEAR the breeze. That was a gift. I’ll take it.
I’m trying to remember this so that when I wake up tomorrow morning and wonder why on earth my legs and hips are aching so badly I’ll be reminded of the “new” walking I had been doing and will have to try to do from now on and then hopefully I’ll be reminded of how peaceful it was at times. There were some truly quiet moments…
PRECIOUS ACTUALLY…
Otherwise, he stretched my body in ways I didn’t know it could stretch today and he also gave me even more homework to FIGURE OUT what the MAGIC word was to get my hips to RELEASE and LET GO. He said the word RELEASE doesn’t work for my hips. He’s even tried others (I had no idea he was doing this I was so focused on what was going on) and they didn’t work either. Soooo, he’s asked for help in figuring out what the MAGIC WORD is for helping my hips and torso to RELEASE.
MAGIC WORD.
Silly guy. Felt like I was back to being 6 and an adult asking me, “What’s the Magic Word?”. The thought crossed my mind that perhaps he should say, “Pretty Please?” and then maybe my mind and my body would finally RELEASE and LET GO…
So yeah. Good appointment. Doing OK so far. Feeling a bit of the walk and a bit more lightheaded as the day goes on. So I should probably stop writing, finish up my day and get to resting. Never know what mental and physical symptoms are going to show themselves with these treatments…
Oh and by the way, I get to stay up as long as I want if I keep getting the late night energy that tells me I don’t need to sleep.
SLEEP? WHO CARES ABOUT SLEEP?
Me in the mornings…
BUT–That’s what my body keeps asking me late at night. I’m becoming quite the night owl. I’ve been concerned about this because I need my sleep but when I told him today he was excited that I was starting to get ENERGY BACK.
“Yay!”, he exclaimed as I told him. “Take advantage of it. Don’t suppress it. This is actual ENERGY. Take the time to do some sit-ups (Ha!), some push-ups (Ha!), some walking around your apartment, some dancing…something. Find an outlet and some activities to do when this happens. Your body is resetting it’s cycles and rhythms. I know you need sleep. I’m sleep’s biggest advocate. BUT your body isn’t ready for sleep like that just yet. At least not at night. It’s just learning how to be again. LET IT! DON’T WORRY. DON’T PUNISH YOURSELF FOR NOT SLEEPING. USE IT! I bet you’re not sleeping well when you have this energy right?”
I told him no. Definitely not sleeping well.
He responded with an encouragement to use the energy so that I could sleep better and it would be able to even out eventually.
His whole point was that this is like a “RE-START BUTTON”.
My body is RE-STARTING…
RE-STARTING…
Hmm. Cool.
I’ve been saying off and on over the years that I needed a Jump Start at times. I guess this is my chance.
And now back to the chanting…
HEEL 2ND TOE. HEEL 2ND TOE. HEEL 2ND TOE.
175 Blog posts I’ve written!!!!!
WOW!
I am blown away that I keep on writing. It’s been helping me so much. You’ve been helping me so much. All of you who Follow me, stop on by to read a few posts, comment on my Blog, email me personally (I know I still owe some of you responses) and who support me help me stay positive.
I was told by my Chiropractor last week that I needed to start adding EVEN MORE positive thoughts, elements, stuff, things–whatever it is for me to be positive–at least twice more a week. He told me how some of his patients have done that. As he’s been treating me, some emotions have been coming up like FEAR, anger and just being really frustrated. Some of the emotions have been good too. But in order to cushion the impact of the hard emotions (trying not to say negative because perhaps IT REALLY ISN’T NEGATIVE TO HAVE THESE HARD EMOTIONS), he’s highly suggested I add more “up” things to my life.
So yesterday while I was getting my apartment cleaned (one of the best things I have ever decided to let SOMEONE ELSE DO because there’s no way it would get done any other way), I found myself wandering a mall for awhile before sitting down, eating lunch and hanging out.
Here’s what I found in a store:
I LOVE THESE “KEEP CALM” SAYINGS…and this one FITS ME PERFECTLY!
HOW AWESOME IS THIS?! I mean it is SOOOOO ME! It’s a hue of purple, it’s a “Keep Calm” saying, it says “Sparkle” and I love sparkly things, and it’s on a plaque thingie that I can put up on my wall to remind me to keep calm and sparkle. It really helps me to remember that it’s all gonna be OK and I can get through anything because if I can deal with having MS and lupus I can deal with a lot of other crap…EVEN IF IT FEELS LIKE I JUST CAN’T TAKE ANYMORE…and believe me it feels like that often.
So this was one of my first attempts at finding more positive things to focus on. Today I had PLENTY to get my nerves all in an uproar and then I saw that in my bedroom sitting on my bookshelf at eye level and it reminded me to BREATHE and remember what’s more important.
MY LIGHT FROM WITHIN IS MORE IMPORTANT.
It’s not this other crapola that keeps getting in my way.
I’M WHAT MATTERS…
So after dealing with some tough stuff, I made sure to go walk on the treadmill in the “new” (I say it in quotes because it’s been in the apartment building now for probably a year but it’s “new” to me) for a bit and then head up to the sun deck, look at the sky and the world around me and remember what really matters. It’s also incredibly humbling to see that I am a little thing compared to the rest of the world. My problems aren’t AS BIG as the world so it helps to put them in perspective.
And then to think I’m well on my way to 200 BLOG POSTS!
SO COOL!
THANK YOU THANK YOU THANK YOU for being a part of my life.
I can’t wait to see what else is in store…well maybe I can…but to know I’m not alone helps a lot!
Nahleen.com: On the Inside Looking Out 
*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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