Posts Tagged With: lupus

Well We Did It!

Posted on June 12, 2012 by Nahleen

Cleo Kitty and I made it through 4 days without Corey!

On Friday afternoon, I dropped off Corey at LAX so he could fly back to be with his family for his nephew’s graduation.  It was a very bittersweet experience for me not to go and be a part of it.  I didn’t want to see him go because I kinda like having him around (you know–kinda) and yet I was so happy for him that he could go and participate in a family event and that Cleo and I were well enough to deal with life without him for a bit.

With Cleo Kitty’s cancer diagnosis in December 2011 and my dealing with lupus and multiple sclerosis, there is just no knowing what the right decision is for anything and if/when things could go horribly wrong.  I have grown used to Corey being around and to his help in our little family unit.  To have that part of us leave was scary.  What if something went wrong?  What if I came down with a flare up?  What if Cleo suddenly got really sick?  Then what?

Well we’d deal.  We’d get through it somehow.  It may feel like I’ve been alone these past 4 days but the truth is, Cleo Kitty and I take very good care of each other and I have a very important support system out here in LA who can help me if something comes up.  We’d take it one moment at a time.

And then the idea of me not going because I was making a healthy decision not to push myself too far on what was going to be a whirlwind trip was so very hard for me.  It brought back my grieving about having MS and lupus.  It reminded me that I have limitations and there are some things I just can’t do…at least right now.  I really struggled with that.  Sure I could’ve gone…and risked feeling absolutely awful during and afterwards but I didn’t like that idea at all.  I miss my family.  I love my family.  I hate not being able to see my family more.  I can’t stand that we’re on opposite coasts…BUT I want to feel at least okay when I see them.  I don’t want to feel even more tired because I was so stubborn that I just had to go.  Yuck.

So you know what?  Cleo and I got through.  Seems like Corey did too.  He’s on the flight home to us right now as I write this.  I was able to take some time for me and to even relax.  I don’t think I would’ve been relaxing on the trip.  And I can almost bet I feel better physically now than I would’ve had I pushed myself not to miss anything and to go…to act like I can live life the way I think a “normal” person lives…as if I know.

I’ve learned yet again that it is OK to make decisions that are healthy for me and to take care of me.  I am the one who has to live the closest to me.  I deserve to feel better.  And you know what?  Cleo and I are doing pretty darn okay.

And we’ll be doing even better when we have Corey back in our lives tonight.  We kinda like him.  You know…KINDA.

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PAUSE…AGAIN

Posted on June 7, 2012 by Nahleen

I’m so frustrated! I feel crappy again today!

I want to feel better enough to be able to do more. It is so hard to have plans and keep them! I had plans today and yet again I had to pull out of them. I’m soooo tired of doing that.

I wish multiple sclerosis and lupus would go away and leave me alone!

I’m relieved to say that I don’t fight and push through things just to be able to DO them as much as I used to.

It might be healthier for me to wait and rest it out BUT it just means I have to

PAUSE…AGAIN…

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Focus: REST!

Posted on June 4, 2012 by Nahleen

Hi!  I’m back from my Rest-cation!  Hope you all had a good and restful week too!

I am so glad I took the time to rest last week.  Why is that so hard?  I mean, really.  Rest.  After trying to practice it even more these days, the word still seems unfamiliar to me–almost foreign.

I have been known to share with others that I feel “Rest is Productive”.  Do I really believe it?  Yeah, I guess somewhere in a little nook of my brain I’m starting to accept that.  Why?  Because after 2 years of being forced to do more of this strange concept called “Rest” (not to mention the other 8 years of supposedly “resting” my body with an MS diagnosis) I have found that I actually feel better when I do so.  Before my lupus diagnosis 2 years ago, I found that rest was only something I did because I had to and because it “kept me going” like the Energizer Bunny.  I don’t really know that it helped that much to be honest with you.  My head wasn’t in it.  That’s for sure.  Now I find that it actually helps me function better and get on with my day.

BUT I still only really REST when I have been kicked back on my butt.  So there I was last week on my Rest-cation thinking I’m totally getting this Rest thing down.  I mean, if you asked me before Thursday, I was SO RESTING.  Right?  Well, sort of but not fully committed to it.  Then on Thursday after I felt I had rested at home enough and wanted to get out and do things that might be restful for my mind, my body decided it really needed more REST–it was feeling AWFUL with terrible fatigue and pretty weak–and I had to LITERALLY get on my butt on the couch with my feet up and REST.  I mean, really.  Hadn’t I already been doing that?  I guess not as much as I should’ve been.

So I did just that.  I RESTED.  I didn’t have much choice.  I didn’t want to feel any worse.  I learned a valuable lesson too.  That lesson included an actual realization that even RESTING can cause symptoms in my body and that it isn’t all MY FAULT.  I didn’t do ANYTHING to make me feel worse.  It JUST HAPPENED.

That is huge.  Pretty much everyone I’ve talked to about my health has told me before that none of this is my fault and I have no real control over whether I feel better or worse and that sometimes these things really are RANDOM.  Go figure.  RANDOM.  I have 2 diseases.  They are going to act up whether I want them to or not.

I CAN ONLY DO WHAT I CAN TO MAKE SURE I DON’T EXACERBATE THEM FURTHER.

I CAN CHOOSE TO REST.

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I HAVE A CRUSH ON ACUPUNCTURE!

Posted on May 24, 2012 by Nahleen

I have to come clean.  I have a crush on acupuncture.  I LOVE IT!!!!!!  I can’t get enough of it!  I had an appointment today and my body is thanking me for taking the time to help.

It all started a little over 5 years ago when I finally took that long awaited leap into the well of Eastern Medicine.  I had heard rumors since I’d been diagnosed with multiple sclerosis at the time that acupuncture really helped.  To be honest with you I was scared.  I also had been taking an injectable  medication for my MS every other day for those 5 years and the last thing I wanted to do was add more needles to the mix.

Then a co-worker of mine just wouldn’t STOP talking about this acupuncture treatment she was getting from this really nice lady in Beverly Hills, CA and how I should try it sometime.  Well my goodness, I think I kinda went just to shush her up about it and it was absolutely THE BEST decision I have ever made about anything having to do with my overall health and well-being and it changed my life!!!

Not only is the acupuncture amazing but the acupuncturist is one of the nicest, most compassionate people I have ever met.  She sat there with me for two hours that first night and helped me learn all about me.  I was blown away.  She knew more about me than I did about myself.  She was able to pull diagnoses out of my mouth that I hadn’t even brought up to her yet.  I was thoroughly baffled.  And you know, to this day, she is able to pick up on things about my body that my other doctors haven’t even come close to considering.  She was the one who wondered if I had lupus, or what else could be going on besides MS.  She was the one who wanted to know what was going on with my digestion and thought it should get examined and the answer was a small intestine bacterial infection.  The list of her conclusions about me are endless.

That night I had my first treatment and there is no turning back.  She said my prominent issue was that I carried heat and have too much dampness in me.  I knew about the heat.  I didn’t tell her that I was always hot.  She could tell.  She said my skin felt like it was burning.  I didn’t know about the dampness but it explained why I have a hard time with the rain and with humidity.  So after she put the needles in my body she asked me how I was, put on some relaxing music, gave me an eye pillow and left the room.

I had the most profound experience.  I thought I was always going to have to be stiflingly boiling hot.  Within minutes it was like the dam broke and my walls started breaking down within me and the flood gates of cold started rushing through my body and I specifically remember the cold feeling started on my lower right leg and worked its way toward my head and over to the other side.  I thought someone had turned on the air conditioner or put a fan on me.  Nope.  That was acupuncture and that was only the beginning.  The feeling of RELIEF was an absolute miracle.  I didn’t know I could feel “better” like that.  I’m getting emotional just thinking about it still.

The other symptoms she has been able to help are fatigue, stress, hormonal, allergies, asthmatic issues, pain, stiffness, weakness, digestion, sore throat, sinus issues, upper respiratory infections and she has helped me find relief with my overall feeling of malaise.  The only time we hit a wall with my treatment was almost 2 years ago when I had my major lupus flare and we didn’t know I had lupus at the time and she really needed my doctors to help find the diagnosis in order to give me the best benefits.  She told me she thought she was flying blind.  Once she found out the diagnosis (lupus is one of the hardest diseases to diagnose) the treatments greatly improved again and I have been feeling even better ever since.

I have had a crush on acupuncture from then on.  After she and I agreed that I would benefit from acupuncture, she asked me if I wanted try acupressure and I took the next leap of faith.  Sure why not?  WOW.  That was amazing too.  My main flame of love starts with acupuncture and then follows to acupressure because for me I don’t get as much benefit with just the acupressure.  My treatment really needs to start with acupuncture and then go right to acupressure.

It is AMAZING!  I really feel like I have a crush.  I get all giddy thinking about having the appointments/treatments and I can’t wait to feel some relief.  My body is always active with some sort of autoimmune disease running rampant and it needs a “Pause and Calm Down” outlet.

Acupuncture has been the answer for me and I plan on continuing for as long as possible.

Categories: Appointments | Tags: , , , , , , , , , , , , , , , , , , , , | 4 Comments

Motivation: SOLAR ECLIPSE

Posted on May 22, 2012 by Nahleen

Yeah I had heard that we’d be able to see the Solar Eclipse on the west coast but I didn’t think too much about it.  Then Sunday morning it occurred to me that it sure would be cool to see it at the beach.  I brought it up to Corey later that morning and he said, “Well let’s go”.  I don’t think either of us expected that I would actually agree to do it…and then that I would ACTUALLY do it.

I LOVE THE BEACH.  I LOVE THE OCEAN.  It is my place to breathe.  It is my spiritual anchor.  It is where I find most peace and calm and feel most present.  I HAVE BEEN AFRAID TO GO TO THE BEACH since I was diagnosed with lupus almost 2 years ago due to all of the sun exposure.  Not to mention that I also have the fear of getting too hot from the sun and my multiple sclerosis acting up.  I have got to really figure out how I can get myself there more this year because I actually gave in (after some hemming and hawing) and let myself go!  I mean for goodness sakes!  It is only 4 miles away from where I live and I am in Santa Monica, CA ALL THE TIME for doctor appointments.  Why not just take a detour and even drive through there and see the ocean on my way through?

Anyway, I had a wonderful time!  It was hard to see the actual Eclipse happening for most of it but it was so refreshing to be one with the ocean again.  To stand in it and be a part of nature was so fulfilling for me.  I just had to share some pictures with you:

05/20/12 Solar Eclipse in Santa Monica, CA. The glow from the sun was extra strong and so defined. The sun was more defined in this picture than in most I’ve taken.

05/20/12 Solar Eclipse in Santa Monica, CA. I turned away from the sun to see this palm tree and lamp post in the perfect artsy position for a picture as if they were posing. Thought it came out kinda neat.

05/20/12 Solar Eclipse in Santa Monica, CA. I am in my element.

05/20/12 Solar Eclipse in Santa Monica, CA. Love this action shot of me doing my newest ocean dance move?

05/20/12 Solar Eclipse in Santa Monica, CA. Oh yeah. Look at that wave crashing. The waves were kinda crazy too.

05/20/12 Solar Eclipse in Santa Monica, CA. Yes, I really did stand in the ocean. It was pretty chilly at first but it did get warmer the more I was in it.

05/20/12 Solar Eclipse in Santa Monica, CA. Corey with his sexy blowing hair posing with the sun.

05/20/12 Solar Eclipse in Santa Monica, CA. There I am trying to be deep and pose with the sun. No sexy flowing hair for me. 

05/20/12 Solar Eclipse in Santa Monica, CA. I sure was proud of myself for catching the lifeguard helicopter in the shot. Simple pleasures…sometimes.

05/20/12 Solar Eclipse in Santa Monica, CA. And then we went back in time and saw this beautiful ship.

05/20/12 Solar Eclipse in Santa Monica, CA. The sun was getting creative and producing these geometric shapes for us. Even the rays are in perfect places.

05/20/12 Solar Eclipse in Santa Monica, CA. Can’t believe how perfectly aligned the ship, the paraglider thingie and the seagull are with each other and then with the sun in the background.

05/20/12 Solar Eclipse in Santa Monica, CA. The light started getting pretty dramatic.

05/20/12 Solar Eclipse in Santa Monica, CA. One of my favorite things to see in nature is the sunlight reflecting on the ocean.

05/20/12 Solar Eclipse in Santa Monica, CA. Behind me were these pretty white fluffy wispy clouds against a VERY blue sky. And of course the palm trees are awesome too.  Wonderful.

05/20/12 Solar Eclipse in Santa Monica, CA. This line of palm trees caught my eye. I had to catch the view. And as you can see, there’s a light misty fog hanging in the air. Couldn’t see the mountains at all this time and the pier got lost too.

05/20/12 Solar Eclipse in Westchester, CA. Alas, we had somewhere we had to be so we had to leave the beach and it was here that we saw a better view of what was actually happening during the Eclipse.

05/20/12 Solar Eclipse in Westchester, CA. I had decided to try to grab one more picture on the spot and it turned out to be the best one in the whole series of the actual Eclipse itself. You can see the Eclipse happening in what appears to be a smile of light just above the building almost to the center. It was really cool!

 

So as you can see I did it and I had a great time!!!!!!  Neither the lupus or MS bothered me at all while I was at the beach in the sun and I think it was because I was in the moment and I wasn’t worrying about it.  Usually I can feel the sun bothering my symptoms right away.  The symptoms didn’t show up until the next day when my body said it was time to live in a cave of darkness for the day (kicking and screaming might I add) and it really did help!

Thank you to the Solar Eclipse for giving me the motivation I needed to get out and get to the beach where I mentally feel my best!!!!!  I desperately needed to do that for my own sanity and today I can admit that it really was worth it.

Categories: Motivation | Tags: , , , , , , , , , | 2 Comments

The Many Shades of…

Posted on May 21, 2012 by Nahleen

Life?

Feelings?

Disease?

Lupus?

Multiple Sclerosis?

Thoughts?

Realities?

Colors?

Greys?

Emotions?

Me?

ALL OF THE ABOVE.

That is how I’m feeling today.  I used to think in black and white.  Then I discovered there were many shades of black and white.  Then I realized grey happens too.  And there are many shades of grey.  After talking with a friend today I have come to the conclusion that there are also many shades of all colors.  There are even colors that I didn’t even know existed.

THAT IS LIFE.

It is how I feel about the above list and much much more.  What a roller coaster this life is.  What a roller coaster my life is with MS and lupus.  I had a hard week last week mentally.  I felt completely depleted.  The weekend helped a lot.

Saturday was a pretty good day for me.  I was able to spend hours on the phone with a good friend from high school and that would’ve been hard for me to do even a year ago.  Talking can be exhausting for me cognitively (I know I know, those of you who know me can’t believe that with all the talking I do…).  Then I talked to my family after that too.  It was a big phone day.  I was also able to make it to Corey’s Improv Show to see him perform with the group he’s in, The Magic Meathands, along with a bunch of other really talented peeps and had a ball laughing and getting out of my head.

Sunday ended up being a really nice fulfilling day too.  Yeah, I was tired from my activities the day before but with a little coaxing Corey convinced me to go to the beach and watch the solar eclipse.  It was so nice to be able to walk on the beach in the cool sand (never walked on cool sand) and have my feet in the ocean while watching the eclipse.  It is when I’m standing in the ocean that I feel the most connected, present and at peace.  Everything else just falls away.  I don’t get to do it enough because I am afraid to be in the sun too much due to my lupus sun sensitivities and MS heat sensitivities so this was a real treat for me.  And the fresh air was wonderful.  It helped me relax A LOT.  Last night I thought I had gotten away with being in the sun because I didn’t feel too physically bad at all.  I think I actually felt better physically.

…UNTIL I woke up this morning with what I call the “heavies”.  UGH.

I was FINALLY able to figure out THIS MORNING that it’s the sun that triggers lupus and the heat that triggers the MS and thus the “heavies” begin.  What are the “heavies”?  You know those X-Ray vest thingies they put on you at the dentist?  That is what it feels like all over.  It’s crazy heavy fatigue.  It means I am in DESPERATE need of rest and I need to stop everything.  Oh and that wasn’t my plan today whatsoever.  I had THINGS TO DO.  Well, my body told me it needed rest and I was forced to listen.  Those THINGS TO DO are going to have to wait.  (I still hate to wait even though IT HAPPENS ALL THE TIME.)

So up and down and up and down and up and down I go.  The many shades that I referred to in the beginning of this post kept coming up in my thoughts this morning.  I don’t regret having a good weekend and probably doing too much.  I feel pretty darn good about it.  (That’s huge for me by the way).  It’s just soooooooooooo hard (words can’t describe my feelings–hence the many shades…) to live life with lupus and MS.  So frustrating.  Yet I’m grateful I was able to walk the beach and see the ocean.  I’m grateful to have had my time with Corey and that he performs and gives me excuses to get out and to laugh.  Laughter is the best.

And the many shades continue…

I will end with posting a couple of YouTube videos of James Morrison singing “Wonderful World”.  I LOVE HIS VOICE.  The first is the official music video which is really kinda odd but I like the production of the song.  The second is just audio and no video of the acoustic version of the same song.  I hope you enjoy them.  I heard this song almost exactly 2 years ago right before my whole body went to hell in what I later found out was a lupus flare.  At the time I heard this song my eyes had gone wacky and I was having an extremely hard time seeing and processing light.  I was feeling pretty darn down.  I heard this song and he really hit me.  He not only hit on my emotions that I still feel a lot to this day but he reminds me that I’m not alone.

Enjoy!

 

 

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Not a Happy Nahleen This Morning

Posted on May 10, 2012 by Nahleen

I am so not a happy Nahleen this morning. I feel awful. I tried a new blood pressure medication yesterday–ONLY ONE PILL–I will NOT be taking that again.

I feel weak, depleted, achy, stiff, my body temperatures are going hot and cold, and I really feel like I’m getting the life sucked out of me. I’m trudging through muck and I feel like my hands are stuck to a stringy glue-like substance and I’m starting to lose touch with me.

I’m so frustrated and powerless. I had plans for a Physical Therapy appointment and I also had a commitment to fulfill for tonight. Both of these plans will now have to be cancelled for today…because of my body’s reaction to ONE PILL of a line of blood pressure medications that I previously struggled with six years ago. So I got to wake up off and on all night with my body feeling so “weird” and was given a chance to reminisce about those horrible days of trying crappy medications to take care of an issue that had nothing to do with my chronic illnesses. I think what was happening back then was that my multiple sclerosis and lupus (didn’t know I had lupus at the time) were feeling very overwhelmed by any new medication because I was taking a very strong injectable medication for my MS and they were especially unhappy with BP medications so my body went into purge mode. I remember all too well that I was starting to feel lifeless, like the medications were sucking the life out of me.

I have been currently taking a blood pressure medication that has actually worked out but my doctor insisted on raising the dosage by adding another medication and instantly my mind went into RED ALERT. I figured that I’d be okay this time because both my MS and lupus are being treated and I’m no longer on the injectable medication. WRONG. Turns out my body rejects diuretics altogether. No more. All done. I tried it for one day. My body hates it, doesn’t want it and it is all done.

I agree. I hate it, I don’t want it and I’m all done with it too. I will be calling my doctor today to let him know I’m not taking it. It has been a long time since I woke up feeling this physically crappy. Turns out I like my body much more without this new poison. Hey, at least it helps me have perspective that I don’t need to feel this crappy (and I haven’t FOR A LONG TIME NOW I GUESS) and that I want my previous body back–you know, the one from over 24 hours ago that hadn’t taken this stupid medication yet.

So today I will be resting, drinking lots of water, hoping my body can rebuild and repair itself and will do my best to have patience. It’s time to be gentle with me and to remember that I’m not the same person I was mentally or physically six years ago and I can get through this one thing at a time.

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Motivation: GRATITUDE

Posted on May 8, 2012 by Nahleen

This morning I am grateful.  It’s such a relief to feel grateful.  It would be so nice to feel it all the time.

I’m grateful to be able to get up and face the day.  I’m grateful for so much love in my life from my husband, my kitty, my family, my friends, a huge support system, people in general and with life.  I’m grateful to have a roof over my head, an awesome car, for food to eat, water to drink, air to breathe–that I CAN breathe.  Then there’s my health: the progress of recovery, to take it one day at a time, really awesome proactive doctors, to be able to walk, to see, to move, to even function at all.  I have an abundance to be grateful for.  The list is endless.

What started this new round of gratitude?  I believe it was asking for more help yesterday.

Being on Long Term Disability has required an enormous mental surrender.  I have had to let go of what I thought I needed to have to survive: a job, a consistent paycheck, at least 40 hours of knowing exactly what I’m doing in a week.  It has been almost two years without that routine and somehow it’s all worked out.  Somehow Corey, Cleo Kitty and I have been taken care of.

BUT it takes A LOT of work.  I not only have to spend 24 hours a day 7 days a week taking care of me with self care but there is a mega amount of medical business to attend to too such as: medical insurance red tape, my plethora of doctors, a long list of medications and regimens, and dealing with Social Security Long Term Disability along with the Private Long Term Disability that is provided as part of the Benefits from my old employer.

YES I am truly grateful to have any access to Long Term Disability and to be taken care of AT ALL.  HOWEVER it is SO DIFFICULT to even admit I am disabled, to then ADMIT I can’t work right now, and then ASK FOR HELP, for financial assistance so that I can be a contributing member of society.  And not only is it hard for me to surrender to that need for help, but then they can make it SO HARD to even get the help I need.  This is NOT an easy process.

It is worth it because I DESERVE TO FEEL BETTER.  I DESERVE TO GET BETTER.

With that idea in mind it was so REFRESHING to call the Director of Benefits (yes, I have her direct contact number) of my old employer and let her know about the messy situation I’m involved in between both Long Term Disability Entities.  Not only did she LISTEN but she AGREED with me that that sounds like a mess and she seemed genuinely surprised this was happening.  I ASKED HER TO HELP ME and you know what?  She’s going to try to find out what’s going on and to do just that, help me.  She was nice and she was sincere.  She backed me up all the way.  It doesn’t mean she’s going to be able to change anything but it is just that much more empowering to feel her support and for that I am grateful.

GRATEFUL.

What a wonderful word.  What a inspiring idea.

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