Posts Tagged With: MS

Operation Nahleen New ‘Do!

Posted on December 12, 2012 by Nahleen

OK.  So here I am.  I’ll spare you the scary in-between pics (weird foil and other strange things they do to your hair when coloring it and stuff) and show you the results instead.

I decided to go to a totally different hair stylist this time to see what would happen.  Devachan is the name of the place and they specialize in curly hair.  I really had a great experience there the whole way through.  I was pampered as soon as I walked in the door.

I had scheduled a hair appointment just to cut my hair and a hair color consultation (the hair coloring would come another time).  So what I didn’t mention earlier is that I had a VERY different hair style before this final hair style.  I LOVED IT BUT it wasn’t me.  My awesome hair stylist told me that if any adjustments were needed on my hair she’d do them at the coloring appointment.  So I really thought about how my hair was during the 4 days between appointments and came to the conclusion that it was really NOT going to work out.  I was looking for something fun, more out of my face (find that more and more I can’t stand it too much in my face–think it’s sensory thing with health stuff), off my neck (heat reasons due to MS and well probably the lupus too), could handle wearing a hat more (lupus–need to wear one almost all the time if there’s any UV rays or I can FEEL them), handle the curls, a little funky too AND OF COURSE IT HAD TO HAVE PURPLE!  Sooooo, at the coloring appointment I had a heart to heart with my stylist and she took care of it and together we came up with this.  I got to have 2 different hair styles and pamperings in 5 days!  I call it the ME DO.  She’s a Junior Stylist who is working her way up to Senior Stylist and I think she was pretty nervous because she was trying something very new and NOT what she had recommended at first.

However, AT THE FINALE, the Senior Stylist who was there was blown away by the outcome and exclaimed how SUPER CUTE it was!  That it was TOTALLY me and that I was a true artist by telling her what I needed.  So it worked out great because my Junior Stylist got a lot of praise and was also happy with how it came out.  I think we both learned a lot from each other.  She was very funny, sweet and honest.  Meant for me I think.  Turns out the Senior Stylist wanted pictures right away from his phone so that he could include them in their own Hair Style Manual for examples.  Well then.  That’s a pretty neat compliment if you ask me.

And without further ado:

INTRODUCING THE NEWER MORE IMPROVED NAHLEEN ‘DO!:

Here’s the Final! Doesn’t really show how good it looked but it shows the purple!

Side view! Needed the cut to be short to be off my neck for health and heat reasons mostly. I love it that short!

The FINAL of the back although I shouldn’t say that because my hair stylist kept fixing it even as I was walking out the door…

And when I got home I kept playing with it so we could see it from all angles. It’s purple, it’s practical, it’s cute and it’s ME! I LOVE IT!

And another angle because I was having fun!

And I just had to show the top!

And I post this one because I feel like it shows my spunkier side. I’m thrilled with this style FOR ME!

AND A WEEK AND A HALF LATER I STILL LOVE IT!  WOO HOO!

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AND…I’M BACK!!!!

Posted on December 11, 2012 by Nahleen

Yes I’m here!

Dang DSL is back up and running and apparently so am I!

There’s a lot of life going on here.  There’s the holidays, doctor appointments, taking care of me (full time job), more disability issues that seem never ending and insecurity there because one entity terminated my coverage which then cut off my healthcare coverage, but then I happened to go on Medicare (having pride issues about going on that at age 35 but at the same time so GRATEFUL to have the coverage) LITERALLY the next day after being cut off, yet at the same time there’s a whole Prescription Part D of the Medicare coverage that I had not enrolled in because I was told by my healthcare people not to worry about that since they would cover the Prescription part of my healthcare, but then that couldn’t happen because they had to cut me off due to the disability entity being connected to my work and they gave me no time to sign up for that part which I believe is illegal, so now I’m trying to find the time, energy and patience to sign up for a Prescription Plan and have to pay out of pocket for my medications until I do so and I HAVE NO IDEA HOW I’M GOING TO GET MY GILENYA MEDICATION FOR MS BECAUSE IT’S SO EXPENSIVE (that’s tomorrow’s priority call), I’m also trying to appeal all of this but before I do that I need to be able to even get through reading the horrible termination letter from this disability entity that is so upsetting for so many reasons, so I’ve been dealing with feelings and emotions, picking myself back up, getting a new hairdo that I plan on showing pictures of very soon, dealing with an undiagnosis of cancer for our dearest Cleo Kitty yet she still has a very sensitive immune system and we are trying to balance all those issues, along with my newly diagnosed IBS acting up because the treatment just isn’t cutting it, along with having multiple sclerosis and lupus, having a really neato husband who’s always there and supportive and trying to spend time with him while he’s making changes, trying to have a social life, doing my best to stay sane, be in touch with lots of people, trying to rest and recover and it goes on and on.

I made that a MEGA RUN-ON sentence because I think it helps to see just how OVERWHELMED I am and how big my life is.  Sure there are a lot of really great things going on but they are intense and I truly believe I’ve been on a spiritual journey for quite awhile that is really helping but a lot of work.  HOWEVER, there are some really seriously scary things going on with this current healthcare insecurity and financial insecurity and a lot of feelings of anger yet at the same time it’s the IBS that’s acting up and my MS and lupus have calmed down.  BUT I have to be careful of that because that could change at any time especially if I don’t do all the self-care I need to do and get enough rest.  And hence things get done when they get done and that’s how it is.  As a person who is a Type A personality at the core and has had to really unwind that over the years, it still hits me every time and I struggle with it trying to get myself to just calm down.

It’s hard to PRIORITIZE right now but I’m taking it moment by moment and breath by breath.  Day by day is the best I can do.  By the way, did you know that BREATHING and taking extra BREATHS helps???  I mean who knew?  I’m really finding out that I hold my breath way too much so I’m trying to work on that.

WOW!  I’m tired just from writing this.  My Cleo Kitty is calling me.  She beckons quite often these days.  Gotta love her.  She is quite a spirit.

I hope you are all well and that I can write more soon.  Take care and I hope you can remember to breathe during this time of the year too.  Turns out it’s quite important to do…

 

 

 

 

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Short and Sweet

Posted on November 29, 2012 by Nahleen

Hi there. WHAT A WEEK!

We have had Internet issues all week so I’m typing this from my phone. I will elaborate later but here’s the gist:

1. Sinus infection: got really close to worse and almost started up my asthma so I was close to needing an inhaler again…more antibiotics but I think they’re helping.

2. It’s raining which means my lupus and MS are acting up.

3. Found out the hard way yesterday that the Private Long Term Disability company I’ve been with for 2 years has dropped my coverage. Very upsetting. Yes I will Appeal. HATE that I have to. This could also affect my healthcare coverage because it was all connected through my work.

4. Figured out I start Medicare health coverage this Saturday…not in 2 weeks so at least I’m covered there. However, the Prescription coverage is sticky right now. Still have lots more phone calls to make…NOT a happy camper about that.

5. And we have KITTY MIRACLE news! It’s a long year of a story but it is most likely that our dearest Cleo Kitty DOESN’T have cancer and has been dealing with a very sensitive immune system that has so many other issues. And right now she seems to be feeling better than she has in a long while which is even AWESOMER! Another story to elaborate on there too. I think Corey and I are still in shock about that. We found out last night!

And that’s enough for now. Hard to write anything on a phone but still so cool that it’s even possible…

Hope everyone is well and I will write more and respond to Comments when I can.

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Nahleen’s THANKITUDES!

Posted on November 21, 2012 by Nahleen

THANKITUDES you ask?

Are you thankful and grateful?  Are you having a hard time choosing between one?  Do they come with “att-itudes” sometimes too?

SURE!

Let’s take a look at Nahleen’s Book of Nahleenism’s and oh look at that!  She’s just added a new word to her language: THANKITUDEFUL.  Definition: Feeling thankful, grateful, adding the attitude where necessary (or not–your choice).  Also can be written as THANKITUDES…

Quite often these days I find myself feeling thankful, grateful and full of attitude.  Sometimes I find myself feeling just one of those.  Is there a difference between thankful and grateful?  Hard to know really.  I think it depends on the day, who I am that day (I change a lot during the day don’t you?), what’s happening, how I’m feeling and whatever else affects my feelings.

So in light of the upcoming US Thanksgiving Holiday tomorrow, Thursday November 22, 2012, I wanted to share my festive version.

NAHLEEN’S THANKITUDES  (I spent too long trying to figure out if this was a one time only thing or if this could continue and well who cares right now?–I soon found myself not thankful or grateful and FULL OF ATTITUDE because of my own silliness soooo…)–without further ado:

 

AHEM…Let’s try again….no need to make it bold.  Perhaps I put too much pressure on myself…

 

NAHLEEN’S THANKITUDES:

1. I’m THANKITUDEFUL for ME.  Truly amazing to be feeling this way about myself.  This is a work in progress.  Quite often I wonder why I had to be born with such a messed up immune system and why my body had to be so sensitive…why it had to be full of what I conceive as inconveniences and the like.  I can’t stand that I have multiple sclerosis, lupus, probable IBS, food sensitivities like crazy, environmental sensitivities, sometimes asthma and I’m sure the list goes on and on.  And then there’s my crazy mind that beats me up, goes wacky like The Looney Tunes Tasmanian Devil, is meaner to me than anyone else would be and sometimes abuses me.  Then again, I am so much more compassionate towards myself and realize that self care is a wonderful thing.  It helps me to stop, look, listen, pay attention.  These illnesses help me connect more and more with people, with nature and its amazing beauty, meditate and quiet my head, stay more in the moment, and learn who I really am and how to love me for me.  Honestly, I am finally LEARNING HOW TO LIVE MY LIFE.  It sucks that I had to/and still have to go through all of this to get there but I finally am understanding that it’s THANKITUDEFUL that I am for ME.  I’m all I have.  I don’t get to run away and no one else seems to run away from me so there must be some good qualities somewhere.

2. I’m THANKITUDEFUL for my husband, companion, best friend, partner in crime, silly, giggle-making, talented, supportive, compassionate and BIG TIME BRATTY PANTS, Corey Blake.  If you don’t know this guy, you’re missing out.  Standing almost 6 feet tall you’d think that if you’re short like me, you’d have to look up to him and would NEVER be on his level.  This is so not true.  This guy talks to all he encounters as if he is equal with them.  He has the most compassionate heart I know and he is obsessed (in a good way or at least I like to think that I tame that back as if I control him-ha!) with KITTIES!  If he had his way, he’d fill his life with so many kitties he wouldn’t be able to find himself.  He wants to be a kitty for goodness sakes.  As you can guess, our Cleo Kitty is in very good hands.  He is also incredibly funny and talented on the stage and if you haven’t seen him do his thang on the stage or in front of the camera than you are truly missing out on a miracle in action.  He absolutely lights up the stage.  He is my inspiration for getting out there and just doing it.  I myself can’t believe he would stay with me with all that goes on with me with my health but he has been there from THE BEGINNING.  We had only been dating for 2 weeks and my best friend kitty (my sister growing up) passed away and he was there while I grieved.  Only 3 months later my dearest bestest Nana in the entire world who I adored more than I can even describe passed away AND he was there…the ENTIRE WEEK AFTER.  We traveled across the country together to pursue our dreams in Los Angeles, CA from New Hampshire and Massachusetts.  We built our lives here and have just celebrated not only 15 years together as a couple, but 6 years married, 12 years with our dearest Cleo Kitty daughter and 13 years here in LA!  He was with me when I was diagnosed with MS almost exactly 10 years ago.  He was with me when I was diagnosed with lupus over 2 years ago.  And he stays.  He also proposed to me on Waikiki Beach at night at the edge of the ocean, with the moon glowing and the stars twinkling (just to give you an example)—so romantic.  We had the funnest wedding ever and kept it the way we wanted it with our own silly flare.  Thank goodness we laugh and keep it light.  Our conversations travel on the path of silliness, to snippy snappy (our version of fighting), to serious, to meaningful, to heartfelt, to honest, to feelings, back to me giggling so hard by something he said that I’m crying and can’t breathe.  Can you tell I love the guy?  Sure he drives me crazy (uh oh, he’s reading this and might be upset with me for saying this or worried) but that’s because we are the closest to each other and we need someone to drive us crazy.  Apparently none of us are perfect.  And I’m oh so sure I NEVER drive him crazy.  Nope.  Through our ups and downs and such great and amazing times, it is us.  We are a team and I am so THANKITUDEFUL for that.

3. I’m THANKITUDEFUL for my daughter kitty, my Cleo Kitty.  That little girl of mine (is not a little girl in kitty age that’s for sure) is so mature and wise.  She teaches me how to live in the moment.  How to take things as they come.  To stop and play and enjoy myself.  That life is about living in the moment.  She is my BEST KITTY FRIEND.  I adore her.  She was a stray who had clearly been domesticated at some point in her very young life when she was found and really just wanted to live inside and not have to deal with the crazy outside world anymore.  When we met her it was love at first site for both Corey and I BUT it was clearly love at first site between Corey and Cleo.  I was just the extra for a long time.  She’d put up with me in order to be with Corey.  She was smart.  She knew the deal.  Over the years we have built our own very special and connected relationship that warms my heart.  She is my best kitty friend, my health partner (she was diagnosed with cancer in December of last year–almost a year ago) and we take care of each other.  We take turns.  She really does watch over me and I try to do the same.  She understands A LOT of English and gets frustrated that we don’t understand Kitty Language but we’re definitely getting better at it.  She plays, she loves, she sleeps, she is our alarm clock, she looks for support in all areas when she’s not comfortable with something, she is our companion and we love her so.  She really has done well and we had only 2 close calls with her life in the past few months.  One was from trying a new medication but she pulled through in about 24 hours and the last was almost 2 weeks ago.  This one might have also been a medication reaction but in all fairness, she has cancer and a weaker body immune system and is very sensitive with digestive issues and with some breathing issues we’re still trying to narrow down.  I am truly THANKITUDEFUL to have her in my life still.  She’s decided she’s not done yet and we are doing our best to help her feel comfortable and happy and if anything she is still very happy.  Every moment more with her is a true blessing.

4. I’m THANKITUDEFUL for all living supporters on my path.  That includes you.  These living supporters are people (friends, family, people I connect with out in the world, Facebook people, online people, Twitter people, the people I small talk with all the time, my doctors, any people in any part of the medical world I continuously find myself in, anyone who helps me or who I can help), dogs, cats, plants, the earth and nature.  You name it.  I am serious.  Any living thing.  I believe we are all connected in some way.  That doesn’t mean we have to all love each other or even like each other.  However we are all here for each other.  We are all alive and giving feedback in some way.  And as a part of this, I LOVE PEOPLE.  I do.  PEOPLE ROCK!  Sure some of them are more likeable than others.  Some I may not even really want in my life BUT they are there for a reason.  We all have something to give.  We are all just us trying to be US.  That is it.  And yes at times we can all be jerks (yes, Nahleen’s ego–you too–I still don’t believe it), and truly unlikeable (of course Nahleen’s ego has no idea of what I’m talking about) but it’s true.  And so to get away from this silliness I just wrote, I look forward to more and more connecting.  It is what keeps me going.  I think connecting with people is one of my hobbies.  I am so THANKITUDEFUL for you all.

5. I’m THANKITUDEFUL for this Blog.  I feel like this is inconsequential since the other 4 items on this list are so personal and why would I just feel this way for a Blog?  Well, it helps me write which is something I believe I’ve been meant to do for a long time.  I just need to write.  Not sure what that means but this is my 141st Blog post so I guess that means something.  I had no idea my Blog would go this far.  I had no idea I’d have this much to write and oh so much more!  I had no idea that anyone would want to join me on my journey.  I didn’t think anyone would care (again, about my crazy mean mind sometimes as posted above).  I didn’t know that I’d even be silly and post about ’80s songs or post any pictures.  I just didn’t know.  Once I jumped in this time I was ready.  It was time.  Thank you for being there.  It is so cool for someone such as myself who has to spend so much time at home resting and taking care of myself in order to get through the day.  So much self care to do and most often this has been added to my list of things I NEED to do to survive.  Sometimes it’s taken off because I need to pace myself and just breathe.  It all really depends.  And you know what’s also so cool?  Hearing from you!  Getting comments on my posts has been one of the coolest aspects.  I just love it!  Thank you to so many of you for encouraging me along the way and even way before I could really commit to it.  You know who you are.  You rock!  I am so THANKITUDEFUL for this Blog of exploration, silliness and connection.  I can’t wait to see what the future holds for it!

 

So that’s that.  I think that’s enough for today.  I really needed to write this.  The nudge has been on me to write something like this for a few days now and maybe I can breathe a little easier knowing I got it out.

Thank you thank you thank you.

DO YOU HAVE ANY THANKITUDES you would like to share?  I’d love to read them!  I have a feeling we all would!

Take care all.  Will write soon I’m sure.

 

 

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I can LIVE. I can FUNCTION. I can DO.

Posted on November 5, 2012 by Nahleen

A week ago today I was in the ER TRYING to get some answers about why I felt digestively HORRIBLE!

TODAY: I feel sooooooo much better!

AMAZING!  I am truly grateful.  It means so much to me to be feeling better.  Sure, I keep waiting for the other shoe to drop (you know, that infamous shoe that is always hovering and just waiting with baited breath to drop) but it hasn’t happened yet.

I definitely still have recovering to do BUT I can eat.  I can LIVE.  I can FUNCTION.  I can DO.

ACTUALLY:

Despite the absolutely miserable week I had last week until about Friday, I have received 3 VERY GOOD PIECES OF HEALTH NEWS that I feel I MUST pass on to you.

1. I heard from my Rheumatologist that all of my bloodwork came back really great and stable and that she firmly believes my lupus has gone into REMISSION.  It doesn’t mean I won’t have symptoms BUT it does mean that all of my organs are healthy and I am stable.  There is definitely no sign of a FLARE of any kind.  I’ll take it for as long as I can!

2. I had an appointment with my MS Specialist Neurologist today and he told me he felt like my MS was under control and that despite all of the crap I had been through in the past week (or even in the past 2 months digestively overall) that I am doing extremely well and my physical well being according to an MS standpoint is BETTER than it was in July!  He’s very happy with my progress.  Now this is with having a VERY early appointment this morning, hardly having time to shower, and rushing to eat (and thank goodness I could even do any of that–not sure how I would’ve gotten there had I felt any worse but I digress and think about things I don’t need to), and being half asleep the whole time.  WOW!  It usually takes me about 4 hours every day to really feel like maybe I can get through a day.  It’s just the way it is.

3. And now it seems that getting a 2nd opinion from a different Gastroenterologist paid off for me.  It’s all about new input and different experiences.  My 1st Gastroenterologist has been really integral in getting my health where it was until about a few months ago.  I do believe it’s time for a change.  This new guy might just be my choice.  He saw things a bit differently, approached it on a different path and convinced me to JUST TRY (he really emphasized that because I was so against more medications) this new medication treatment and see what I thought.  If it didn’t work, then he’d try something else.  Come to find out, my Primary Care Physician’s newer Physician Assistant knew of this specific specialist and was pleased to hear I was seeing him.  She said her experience is that he is VERY GOOD and an expert with what I’m dealing with.  Well OK then.  Guess it was the right choice.

4. BONUS: I just had to add this because my goodness, I just brought up all these titles of medical professionals in 3 paragraphs.  I think I need to get some credit for being able to come up with their names when my head is so tired.  Phew!  Rheumatologist (and how on earth would anyone know how to spell this if they hadn’t seen it written out tons of times?), MS Specialist Neurologist (so specific), Gastroenterologist (took me forever to figure out there was an “e” there and not an “i”–not sure why there isn’t an “i” but anyway), Primary Care Physician, Physician Assistant…WHOA!  I AM TRULY GRATEFUL TO HAVE ACCESS TO SUCH TALENTED PROFESSIONALS IN THEIR FIELDS who are so proactive with my health and were completely available for me in just 1 week!  In fact, if you count my first Gastroenterologist, he was also available to me, I just didn’t agree with what he was thinking about my health situation at the time…

So all very very good things are finally happening.  It is about time.  I’m going to cherish them as long as I can because as we all know, everything can change in an instant.  Now about cures…  You know, I stopped expecting cures for anything I’m going through a long time ago.  I’m really just looking for relief and to feel better with a much more improved quality of life.  Waiting for a cure would make me STOP living and I am doing everything I can to LIVE.

IT IS ONE HARD JOB TO LIVE BUT I’M DETERMINED TO DO IT!!

P.S.  I’ve been quite reflective lately about all I have been through.  I think a lot of it has to do with my 10 year MS diagnosis Anniversary coming up.  10 YEARS…I think that speaks for itself.  I feel a very personal Blog Post coming in the very near future.  Stay tuned.  Right now it’s all still processing.  It will be direct from my heart.

LOVE TO ALL!!!

*And special thoughts go out to those affected by Crazy Storm Sandy.  Wishing for peace and relief for all of you!

 

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Happy Halloween and Health Update!

Posted on October 31, 2012 by Nahleen

Happy Halloween!  Hope you’re enjoying the day!  Let the Holidays Begin!

Hi there.  Feels like I’ve been off the Blog Radar for a really long time!

How are all of you?

I have had quite a struggle lately with my health.  I’m currently on what is becoming a long journey to find out what is bothering my digestive system so much.  It is a difficult and draining path right now as I call my doctors and ask for their input, continue to feel intense yuckiness, see new doctors as quickly as possible, try to live my life, take care of Disability Business, take care of life business, take care of other medical business, try to take care of my MS AND LUPUS, have some fun perhaps, spend time with my husband, Corey and my Cleo Kitty and do what I need to do for mental health and stability.  Exhausting.

It is definitely really hard right now but I have hope that with this big group of medical supporters, I will find answers.  I feel like a coin that can flip any time from “full of hope” on one side to “full of dread” without even a second passing.  Right now it feels like I’ll never get answers but I know it’s because when I have discomfort in my torso, that is all I can even manage to process in my mind.  It is the center of my body, the center of my Being.

And so I’m burned out.  I’m discouraged.  I’m frustrated.  I’m grieving the whole health situation I have found myself in.  I’m also hopeful, I feel loved, I feel very supported by all of you, I feel resolved to get answers and there’s even some faith mixed in there.  I don’t like the other “negative” choices of how to deal, so I’m gonna have to choose to keep on keepin’ on and with any luck I’ll find some answers and start to feel better.

I want my life back.

I AM DETERMINED TO GET IT!

 

 

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STUPID INFECTIONS!

Posted on October 23, 2012 by Nahleen

TODAY I’M FRUSTRATED!

I have had enough of feeling sick!  I’m so done!  Too bad my body isn’t!

Yesterday evening my digestive issues started up AGAIN!  They had calmed down and things were ALMOST good for about 4 days…THEN BOOM!  I’m doubled over and having stomach cramps really bad AGAIN.  AGAIN!  To be honest, I didn’t think I was out of the woods yet with this small intestine bacterial infection.  My doctor had mentioned it would take awhile and that I’d probably continue to have some bad waves.  But he had told me to take the antibiotics for as long as needed so that I could go through the whole process of feeling really sick and nauseated and wait it out to the other side.  Then he said to wait a couple of days after I started feeling good and then I could stop taking it…

WELL I WAITED FOUR DAYS…just to be SURE.  That’s what I get for taking care of me right?  I mean, the 4th day started and I really thought I was doing well yesterday.  BUT THEN 6pm HIT me like a bomb and I haven’t been feeling well since.  I thought perhaps it had passed by this morning…BUT SLOWLY the stomach cramps started again and I started feeling bloated and nauseous…

UGH!!!!!!!!  GRRRRR!!!!!  I NEED TO FIND MY HULK HANDS AND PUNCH WALLS!

(Disclaimer: No hands will be punching walls on their own…must have lots of cushion…)

So I muttered and grumbled about it this morning and couldn’t help but be angry.  I’M TRYING TO LIVE MY LIFE HERE!  Trying to get back into the swing of things AGAIN!  The stomach discomfort can be so paralyzing and disabling I can hardly do ANYTHING when it happens and I’m usually a mess after the wave passes–IF it passes.

Soooooo, I called the doctor like a good proactive patient even though I resented it the entire time.  He called me back a few hours later and told me that what I’m going through what sounds like a classic small intestine bacterial infection reaction to the treatment itself.  That the good news is that it sounds like the MAIN infection has been killed BUT that there are pockets in the intestines where the bacteria can hide and that they’ve come out and are free since the first layer of crud is gone and the antibiotics are now KILLING these furious LITTLE CHOMPERS and are not letting them hide and sneak around anymore!  At first he was going to have me keep taking the antibiotics twice a day till this passed but I was honest and I told him this was day 18 and I was really irritated and my body was quite uncomfortable from the forced and prolonged detox.  He listened to that, seemed to change his mind and said that I should take the antibiotic twice a day for the next 2 days so that I will have taken it for 20 days in a row with this round.  The next step will be to start a MAINTENANCE regimen and only take it once a day twice a week on Monday and Thursday for a month or two to make sure there’s no more new growth for awhile…  I’m pretty sure I’ve done this before and it has worked out really well…HOWEVER it also means I’m going to continue to have these really bad waves while feeling “almost good” the other times…Sooooo, there will continue to be NO status quo JUST YET–if that’s EVEN possible for me.  Once the maintenance round is done then I start on Probiotics to help maintain even MORE digestive health.

Well OK then.  FINE.  So glad that the antibiotic is still killing and working as necessary BUT what about me?  It affects ME.  It makes me have to STOP everything.  It makes me feel AWFUL as it’s all happening.  I’m the one who has to PAY FOR IT.

SOOOOOOO FRUSTRATING….

I know this will also pass.  I know that being so committed and determined to do what I can to kill this infection is what will help the most in the long run.  IT DOESN’T MEAN IT WILL BE EASY!!!

STUPID INFECTIONS!

*******

I’m also trying to remember to keep in mind that I also saw my Rheumatologist today for a follow-up regarding my lupus.  The GREAT NEWS is that she thinks the lupus has really calmed down quite a bit and that more and more of the disease seems to have gone into a bit of remission.  Sure I’m having some symptoms that are flaring up but overall I’m doing a lot better…

YES THAT ROCKS!!!!

And it seems like my MS has also calmed down quite a bit so that’s also AWESOME!

NOW ABOUT THIS INFECTION–GO AWAY!  I’M BUSY TRYING TO LIVE MY LIFE!

 

 

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I GOT OUT!

Posted on October 2, 2012 by Nahleen

I did I did! I got out, had lunch with a friend and I didn’t have to cancel! Yippee!!!!

Yes it was 100 degrees today and yes my MS was still upset with crazy heat fatigue, BUT other symptoms seemed to have calmed down. I was able to get up earlier and stay up, pull myself together, get out into the hot car and hot sun and make it to lunch!

The lunch was yummy at BJ’s Restaurant and Brewery (and the tables were freezing–never had that before), the conversation was fun and the friend was so easy to talk to and be with (as usual–you know who you are wink wink). It was lovely! We ate from the lunch specials and got to save some money, we dealt with an overeager and very bored waitress (who hounded us about what we were going to order and did we have any questions and and and and…she was really like that), I had a refreshing berry limeade drink thingie and then we walked around the mall right next to the restaurant. The mall was quiet and relaxed, we overwhelmed our noses with fragrant fall candles at Bath and Body Works (some crappy–I swear a whole table was set up just with crappy ones….some wonderful–I swear a whole table was set up with wonderfully accurate fragrances of fall like “leaves”), looked at shiny things, giggled about gummy bear shaped earrings (totally cute) and about how the ’80s are so back in style with fashion accessories (can you say Madonna gloves from “Like a Virgin”?) and gabbed, gabbed and gabbed.

Then sadly she had to leave. I’m not sure where the time went. I stayed at the mall and walked around some more, poking, looking and trying oh so hard not to buy anything. I was a good girl. I didn’t buy one item. It was hard. Some of the sales were really great. Then again, it was so hot I doubt I’d be able to be comfortable trying on clothes anyway so it worked out. Before I left, I sat for a bit and just took in the ambiance. I haven’t had that much fun in a mall in a long time.

It was so nice to get out, see my friend and to be able to do ANYTHING in this dang heat. Sure, I’ll need to recover now but my mind/soul are happier. And my Neurologist would be thrilled to find out that I had some fun. His orders a couple of months ago were to have more fun. OK. I did.

And now I need to make my Rheumatologist happy and get some rest.

My body will be happy with that idea too.

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Dreaming of a Non-Boiling Fall Season…

Posted on October 1, 2012 by Nahleen

It’s fr*&^%$#@! 95 degrees in West Los Angeles (over 100 degrees in the Valley) today (October 1st) and I find myself daydreaming about the Fall Season in New England where I spent my first 22 years…

Sure it’s actually quite typical for October to be really crazy hot in Southern California. Hence, the idea of fire season. This is usually the month when the fires can get really bad out here. The vegetation HAS HAD ENOUGH. And so have the people. It’s a wonder the people don’t melt and boil as well. The best part about the temperature is that the sun goes down earlier and it USUALLY (I feel like I’m jinxing us all in LA) cools off pretty well at night. USUALLY.

But the biggest tease these days is the Internet and the access to all these social sites where those in cooler climates are praising the Fall Season and how “lovely” it all is. I find myself drooling all over the wonderful pictures of the colorful foliage and wanting to jump in the pictures to get just a taste of it. I wish I had appreciated it more when I was there for 22 years. Funny how that works…

So while I sit here in my apartment with the AC at full blast so that my MS doesn’t go completely crazy on me (been feeling the heat quite a bit today even with the AC) and the blinds closed so I can live in a cool dark cave so that my lupus doesn’t go wacky on me (joints are hurting), I thought I’d come up with this list and fantasize away. We were back in New Hampshire/Massachusetts a year ago at this time and it was wonderful. I really thoroughly enjoyed myself and was feeling quite bouncy. I even found myself frolicking in the colorful forest. I was completely invigorated!

So here’s my Fall Daydream Drool List:
*colorful leaves
*dark red leaves
*lighter red leaves
*yellow leaves–almost golden
*orange leaves
*orangey/red leaves
*half-colored leaves still changing
*even the green leaves that have yet to change
*the breeze through the leaves
*watching the leaves fall from the trees
*the crisp cooler temperatures
*breathing in the fresh cool air
*wearing snuggly clothes
*cooler chilly temperatures but it’s not too cold and freezing
*hot cocoa
*hot coffee–pumpkin flavored coffee and other fall yummy flavors
*hot tea
*hot apple cider
*the steam rising from the hot cups of yumminess
*pumpkins of all shapes and sizes–not melting like they would out here on my balcony right now
*gourds of all shapes and sizes
*decorative corn
*special jams and jellies
*mums
*maple syrup
*maple candy
*maple donuts
*picking apples
*cider donuts
*pumpkin french toast
*pumpkin pancakes
*pumpkin baked yumminess
*cinnamon everything
*the way the sun light shines through the trees and the colorful fall foliage
*scenic drives to see the fall foliage
*lots of hills to drive through
*exploring the countryside looking at the fall foliage
*my eyes watering from looking at the deep vibrant colors
*country stores
*caramel apples
*caramel yumminess in general
*scarecrows
*Halloween decorations
*Halloween festivities
*FROLICKING through the fall foliage wherever I am
*sometimes even when it’s raining in the fall
*the bright clear days and the blue blue sky
*the sunsets–although we do get some pretty good fall sunsets here in LA too
*hayrides
*yummy fall smelling candles–yeah sure I can get them here but there’s something about burning them when it’s not HOT
*NOT having to turn the AC on
*sweaters
*scarves
*sitting and watching the leaves blow in the wind
*lakes surrounded by beautiful fall foliage
*a big field surrounded by beautiful fall foliage
*baking baking baking
*the festive feeling in the air
*the wood stove smell
*all of the wonderful FAIRS!
*eating too much yumminess at the Fairs
*bread bowl soups
*seeing my breath as I breathe outside
*the fall colors in general

And I could go on and on. I know I’m missing A LOT of stuff. Do you want to add anything? Please feel free to do so. I’d love to see what you have to share. And if you have any fall pictures you want to share, please please please post them here! I’d love to see them. I can’t get enough!

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125 BLOG POSTS!

Posted on September 28, 2012 by Nahleen

Oh my goodness! I have hit the 125 Blog post mark!!!!!!

So cool. I couldn’t have done it without you so thank you!

It’s been a roller coaster week and I’m currently in a symptom flare (MS and lupus are FUN–NOT!) so I will try to stay positive (which I’m hoping will help me). I wanted to take a moment and thank you all for being here with me on this writing journey. I have always felt like a writer ever since I was very young and I have really struggled with it. In 5th grade I wrote a children’s holiday story and my teacher liked it so much that she tried to work with me to expand on it a bit and add a few more details (you know, to improve it) so that she’d feel comfortable trying to get it published in a children’s magazine (or something of the sort–what I heard was published) but I think I took her criticism so personally that I blocked her and it off and refused to change the story AT ALL because I liked it the way it was. And soooo, the story was not published. That blocked me and disappointed me for a few years. I still have the story and am hoping to feel willing to expand on it now after all these years.

Then I started writing more in middle school and either I didn’t want anyone to read it and kept it to myself or what I wrote was crazy serious deep (hello puberty) and my teachers asked for lighter stories. And then as a junior in high school I seemed to really blossom as a writer and all of my teachers highly encouraged me and told me they really thought I’d get somewhere with it and to keep expanding on it. Well, I expanded on it and that all really went well.

AND THEN in college I took one writing class and the professor was “not impressed” with my writing and told me I wrote too much and wanted me to get to the point. So here I was completely confused because one school of thought told me to expand and the other wanted me to cut it down. At that point I shut down writing. I may not have had I not been going into the high maintenance field television production that took up most of my time and focus. Production also helped me learn how to express myself in a very different creative way. I had to show you, not write it for you to experience. So, I veered off the writing path and took quite a journey into production.

Yet, there was always this deep soulful need to write. It was in me. It had to come out. But then I thought I had to be perfect. FEAR started to run me and it just never really worked. When I was first diagnosed with multiple sclerosis almost 10 years ago, I had people from different parts of my life who had nothing to do with each other telling me to write my story because of how I express myself. They told me I had a story to tell. They told me that I could really help others and probably myself. That it’s important to let others know what really happens with chronic illness.

And I tried, I really did. I tried too hard. I started up this Blog in 2009 and I think I wrote only 3 posts. Actually, I think I still have them posted if you want to check them out. Reading them now I know I still wasn’t ready. The real me wasn’t really coming out. I felt raw and vulnerable.

Meanwhile, people still said that I needed to tell my story. That I could really help. And that writer in me wrestled with my ego until it finally BURST OUT in March of this year. It has been over 6 months and I have no plans to stop. I had no idea where this journey would take me. I still have so much more to write.

Thank you to those of you who have commented on my posts, encouraged me, read the serious ones, read the long ones, read the silly ones, put up with the ’80s and partied with me, have gone on my doctor appointments with me, have shared my Moments of Peace with me, have felt MS and lupus with me, have read my complaints, have read my hope, and who are teaching me about me. You all play a part in who I am and for that I am truly grateful.

Please feel free to comment any time about any post (I would love to hear from you), to Follow my Blog, to share my Blog with others, to email me in private (you can find a link to my email on the “About Me” page), to friend me on Facebook (Nahleen Blake), to follow me on Twitter (nahleenblake), and connect in general. Oh and by the way, I’m thinking of starting up my own Facebook page where I’m hoping to share my favorite quotes, pictures, silliness, fun, stuff about me, stuff about you if you want, music, anecdotes of life, Blog posts, etc. Keep an eye out for that update soon. More to come!

And thank you all for being you. You help me to be me. And that soul writer in me is FINALLY starting to feel satisfied. I look forward to more of this journey. It has been truly amazing!

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