Monthly Archives: October 2012

Happy Halloween and Health Update!

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!

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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ADVENTURES = LONGER TIME TO POST-RECOVER

Well, turns out it’s Monday yet again.

Not sure how that happened except that time passes and here we are!

I had HOPED to be able to post a really creative and fun Blog read for today all about my adventures this weekend! Alas, it was not in the cards just yet. I’ve been stuck RECOVERING…EXTRA…

This past Saturday, 10/20/12, I had the privilege of going to The Huntington Gardens in San Marino, CA for a Special Night Show Festival of sorts called, “Drama After Dark: Night of the Macabre with Poe and Gorey”. At least I believe that’s what it was called. You get the gist. It was EXTRA SPECIAL because I was able to see my husband, Corey, perform at the Festival, doing what he does BEST! ACT and BE SILLY while reciting lines (along with many other talented actors–two other friends of mine were also performing) written by Edward Gorey.

It’s a lot of hard work I can tell you that much. He performs from 6:30pm until about 9pm back to back in half hour increments and two different shows (if that makes any sense), while acting and having memorized tons of lines, wearing uncomfortable shoes and being very physical. Lots of shenanigans ensue and thus he’s part of a great team of actors who are all pulling together to perform one of the MANY awesome shows that go on all night.

SO YAY! I was able to go! A week before I don’t think I would’ve been able to. I was just starting to feel better overall so I was able to be a spectator. It really is one of my favorite events to see all year. I get to take a drive, walk around in fresh air, look at the sky, see the sights (even if in low lighting), watch A LOT of talent while they perform works of Edgar Allen Poe and Edward Gorey, visit the best Gift Store I have ever been to, drink yummy hot apple cider, eat cookies, and just be a part of something really neat.

BUT along with that fun and excitement, it takes a lot of energy, a lot of time, a lot of physical movement with all the walking and just BEING, a lot of mental stimulation, a long day, a late night, lots of driving which takes up stamina too and the list goes on. This was one of the biggest events I have done in a very long time. I was happy to do it but I figured it would take awhile to RECOVER afterwards.

AND IT IS TAKING AWHILE. Yesterday, (Sunday), I had to take it really slow because I was aching in my joints and muscles, had stiffness in my limbs from so much use, and was dealing with crazy fatigue. I commented at one point to Corey that my legs felt like they had nylons on inside them. I swear I could feel every fiber of my muscles and tendons stretching. Very strange and not comfortable and to be honest, a bit scary too. Soooo, needless to say I couldn’t do much. Plus, mentally I had hit my limit so I needed it more quiet than usual and really had no focus ability left.

AND now today, I’m definitely still feeling FATIGUE more than anything. I’m thankful to have less pain and stiffness and I’m guessing I’ll still need to take it a bit more easy than usual tomorrow even though I need to go to a doctor appointment in the afternoon.

NOW I must finish writing and continue to let me RECOVER. Every day I struggle with myself about what that means and how it needs to play out because life is still in session and there are still bills to be paid, deadlines to meet, etc. and sometimes it is beyond challenging to really find clarity about what is MOST important and the true PRIORITY.

Apparently this Blog had to be a priority today. I think I needed to write it and get it out. I hope to be able to write a Post about this wonderful and fun Adventure on Saturday sometime later this week. I truly had bunches of fun. Thank goodness it was something fun and fulfilling that kicked my butt. Even if I am still frustrated that it did in fact do so…

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CELEBRATING 175 DAYS OF WALKING!

175 Days in a row of Walking!

Go me go!

I just keep on going and going and going–AND it’s for something healthy for me.

There’s no stopping me now!

6 months is right around the corner.

Hope you all have a great weekend! It’s been a rough long week here so I’m looking forward to it. Have a special outing planned for tomorrow. I hope I feel up to it!

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It’s An ’80s Kinda Day Part 22!

I need me some ’80s Silliness!  I’m back for more!

1. You Can Call Me Al  By: Paul Simon

OK.  Who doesn’t remember this one?  How could you forget?  MTV not only played it constantly, but then VH1 did.  All ages would find themselves singing along with the little diddy.  Perhaps you even bebopped around to it.  For some reason, my biggest memory of this is my mother going around the house singing, “And you can call me Al”…Nice pink room right off.  Oh hey look!  It’s Chevy Chase!  That was the other part.  Wow!  Paul Simon and Chevy Chase together!  I mean, what were the odds??  Such a basic set and it didn’t matter this time.  And there’s a saxophone and trumpet.  Wonder if they’ll play them?  Ha!  Let’s all laugh.  They’re trying to come in the doorway at the same time and it’s funny because Paul Simon is so much shorter than Chevy Chase.  And of course I still find myself chuckling because Chevy Chase is singing Paul Simon’s part.  Yep, I fell for it.  What is with Chevy’s hair flips?  OK it is kinda funny…Paul walking by the doorway with a big red drum.  Nice jacket Chevy.  Paul looked so thrilled to sing backup.  Chevy’s having too much fun.  Where’d Paul go?  That little toy instrument Paul’s playing reminds me of my first instrument I got as a kid that I think was supposed to be a Sesame Street toy or something and I got to learn how to play “Three Blind Mice” and I think even Grover taught me.  Love Grover.  Anyway, silly boys playing saxophone and trumpet and dancing while supposedly playing.  And then there was all this “talk” about them being (GASP!) High…on life…yeah…that’s it.  Wow.  Chevy is like a foot taller than Paul.  I can’t believe I still chuckle over Paul trying to get the big red drum in the doorway while wearing his guitar and getting it caught.  Silly.  Ha!  I don’t think I realized how funny Paul Simon is in this.  With twiddling thumbs and everything.

2. I Want Candy  By: Bow Wow Wow

What kind of a name is that?  Bow Wow Wow.  Silly don’tcha think?  And sure.  I want candy.  Don’t you?  Oh wait, what are they talking about?  Nice ’80s graphics right at the start.  Ha!  Hello blue/green screen!  Wow, the saturation is awful isn’t it?  And yes, guy, your sunglasses are so cool with the reflection.  Actually, I always wanted a pair like that.  We were so cool in the ’80s weren’t we?  This is kinda trippy isn’t it?  Nice mohawk.  Of course there are candy canes in the sand.  I know that’s where I always find them.  What is that she’s wearing?  She has cool hair.  Yep.  That’s really the sun rising over the ocean.  Uh huh.  I could never bury myself in the sand like that.  Scary!  Who knows what’s in there?  Ha!  She’s wearing hightops in the sand.  Nice!  Random shot of her licking an ice cream cone.  I don’t get it.  That drummer guy is bugging me.  I don’t know why.  Yeah!  Let’s all have fun!  Yep.  That’s a big candy cane.  I don’t know.  That water looks pretty radioactive to me…

3. Sister Christian  By: Night Ranger

I remember singing this song a lot with my sister growing up.  And I apparently had no idea about what I was singing.  Oh how often that’s happened to me lately.  It just had a cool beat and it was oh so deep.  Is someone tapping a tin can in the beginning?  OK.  There’s a bunch of gals in the shot in graduation garb.  I get the “Sister” part.  What is with the white gloves they’re wearing?  Are we supposed to get the idea they’re all so innocent?  Hmm.  Not sure I believe that.  What is with graduation caps?  They are so awkward!  I remember wearing mine and it didn’t get easier to wear when I graduated college.  Just sayin’.  Of course there is a red curtain behind them.  Are curtains on a stage ever any other color on camera?  Nice slow motion of them all walking with their diplomas down the stares as their hair bounces.  I wonder–did my hair ever bounce when it was long like that and I went down the stairs?  I thought it was about the blonde.  Of course it is.  Those blondes are always getting into trouble.  And the big buildup…ready?  Feels like I should start headbanging or something but it is SO not the song.  Hit those drums!  And we see the band.  Nice big hair they all have.  What the?!  They all have music stands?  Did they just learn the music???  Ah yes.  Let’s go back in time and give a deep blue effect.  Is she Rapunzel?  Is she going to open the window and grow really long hair to reach down through the window so her Prince can come?  Wow.  The band has some pretty rad outfits on.  What is with the purple filter now?  Colorful video.  Uh oh.  I sense some trouble coming…Let’s show all the rainbows of filters we can use.  Now it’s orange.  Hmm.  So she decides to break free and go with the rest of the gals to hang out in a cool car with guys from a band who are much older than they are????  Tsk tsk.  Bad message…

4. Kokomo  By: The Beach Boys

And here’s another that we all just DIDN’T get enough of.  It was only played into the ground and out the other side by radios and MTV…over and over again.  And come on Beach Boys.  That’s all you could come up with?  Geez.  Looks pretty there.  And who can forget, “Bermuda, Bahama, Come on pretty mama”…Hmm.  And they all wear light colored clothing of course.  They’re cool like that.  Nice half unbuttoned shirt there…and green cap…And well, who didn’t love the movie, “Cocktail”?  I mean, it had Tom Cruise in it and he was cute then.  It didn’t matter what was going on in it.  I have special memories of watching this movie with my best friend and absolutely losing our minds with utter silliness as we drank soda (seriously ONLY SODA) out of our orange plastic New Kids On the Block cups.  We were so inspired by it all that we even made a poem…about New Kids…I still have it somewhere.  Not sure how much of Cocktail we watched…Actually, it’s one of my favorite memories growing up.  And then remember being like, “Oh my Gawd!  Is that John Stamos on the drums?”.  I mean, how cool was that?  Now that was random to see.  OH John Stamos…You were so cute back then…And another Beach Boy is wearing a red cap.  What is with the caps?  Do you think there are enough scantily clad ladies in bikinis in that audience?

5. No One Is To Blame  By: Howard Jones

I thought this song was oh so deep when I was a young gal.  But is NO ONE ever really to blame or is that an excuse???  Deep thoughts…What is that the drumsticks are hitting?  Is that a giant tambourine?  Oh look.  It’s like we get to see the mechanics of a song in a way.  Look at those gears go.  Another dude with cool hair!  I can tell.  Is it orange?  Oh and he’s already thinking so deeply.  See that?  Nice dissolves between shots at least in the beginning and now I just feel confused and dizzy…I think they all thought it was cool but my poor eyes.  Oh yeah.  His hair IS orange and it’s really big on top of his head.  Neat.  A cello.  Let’s all sing, “And you want her” (echo: want her) “And she wants you”  (echo: wants you)…allllll the way through the song.  Kinda cool to see the lyrics on screen pass through but still, it is all just too busy!  What is that contraption he’s sitting at?  Is it me or was it just creepy when these ’80s singers would sing directly to the camera???  And I mean, RIGHT INTO IT.  Who wants to bet he worked really hard to get his hair that way?

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Looking For People Who Have Both Multiple Sclerosis and Lupus

I’m on the Search.

I’m ready to have more people in my life again. For awhile, I had to really stay extra focused on a small group because it is actually tiring to deal with people, even though one of my biggest passions is connecting with others.

I’m looking to expand my community. My first mission is to find people to connect with on my Blog. I really get so much from all of you. My next mission is to find people who have chronic illness. It really helps to connect with people who are going through similar circumstances. I have had the privilege of connecting with people with chronic diseases already and it has helped immensely. I continue to look forward to finding people dealing with them. I’d also like to dig a little deeper and continue to connect with people who have either multiple sclerosis and lupus. Everyone I have connected with with those specific diseases has helped me in such powerful ways and I thank you all for that. This next part of my mission seems to be the most challenging.

**I’m looking for people who are experiencing both multiple sclerosis and lupus at the same time.**

I have a real need to connect and relate with people lately. I, myself, have been in support groups in the past and am currently a part of a spiritual support group that has had a profound effect on my overall wellbeing and I am forever grateful for that.

I used to be scared to find people who had similar issues because either I didn’t want to admit the truth to myself, I didn’t want to suddenly take on their unique issues, just wasn’t ready to express myself yet or felt like I couldn’t and that it all had to be kept a secret. I have learned over the years that it is a truly powerful experience to connect with others who have similarities with feelings and experiences.

I am really looking for that now. I have yet to find someone who has both MS and lupus and I know these people exist. I have read about them all over the internet, I have heard about them from my doctors but I want to talk to them directly. Oh and I left out one other part of my mission of human connection. I also want to connect with people who have more than one chronic illness. There seems to be a whole other section of issues and similarities with those who have multiple confusing diseases that they are trying to juggle at once.

So please, if you are someone who wants to connect, feel free to comment on my Blogs or email me from a link on my “About Me” Page. If you are someone who has any of these specific layers of human connection please feel free to do the same. I’d love to have a dialogue with you of some sort. And…if you are someone with both lupus and MS–someone like me–I highly look forward to connecting with you in some way. I think I have the case of needing to fill in the blanks and find more of an identity. One of my biggest confusions is deciphering between which symptom belongs to which disease such as fatigue, pain, stiffness, brain fog, etc. It drives me crazy!

That’s what’s been on my mind lately.

I hope this finds you all well and that we can connect soon.

That seems to be the theme. CONNECT CONNECT CONNECT.

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Celebrating a Very Happy 12 Year Anniversary with our Cleo Kitty!

Happy 12 Years with us, Cleo Kitty! And Happy Birthday to you too!

We celebrate Cleo’s Birthday today 10/10 too because we don’t know her real Birthday and since this day was so special for all of us, we count it as Anniversary and Birthday all in one!

I’ll always remember that day…

We had decided we were in need of a change. We had just moved to Burbank, CA from New Hampshire and Massachusetts (our home states) and had been living in a studio apartment for 10 months. We did OK but we were really struggling for our own space. Talk about feeling cramped.

So we decided we needed to move to a place that accepted kitties (we might have taken in a kitty at this place secretly but we lived directly across from the apartment manager and it would’ve been too obvious), and that it needed to be at least a 1 bedroom apartment.

SPACE AND A KITTY–that’s the answer…and it was!

Pretty soon after we made that declaration, it was as if the universe listened. Corey’s co-worker had mentioned that she had a stray kitty that she was befriending for over a year who really seemed like she wanted a home. She seemed domesticated because she kept trying to come in this person’s house as if she knew that was the place to go. This lady was so nice and would put out towels and blankets for her at night and give her food. I guess she had been coming by to visit this lady for about a year and at one point had had at least one litter of kittens that she had to parade by her so she could show them off. These two were clearly friends. She would’ve taken her in herself but she just didn’t feel comfortable with kitties. She had never had one and didn’t feel right giving her a home that wasn’t completely welcoming to kitties.

Corey caught onto this and told me about it. The problem was, we had just made this decision to move and get a kitty and were still in our non-kitty-welcoming studio apartment without a new place to go. BUT we went to visit her anyway. We just had to meet her. We heard how sweet this kitty was and how much this lady respected her.

As we got to this nice lady’s house, she told us to sit outside on her porch. That “Cleopatra” as she had named her (she would sit very regally and check people out–almost elegant) would be sure to come on by and check us out. I guess she had seen other prospective new people to own and would probably size us up too. Now where Corey’s co-worker lived was in the hills and her house was a bit up the hill from her neighbor’s right next to her, and it had a flat roof. “Cleopatra” liked to climb on these roofs. That’s how we first got a glimpse of her.

I remember seeing little legs and feet and then there she was. She sat on the railing on the porch and sized us up. I think that was really the only time she looked at me that day. She was too busy checking out Corey. And let me tell you, it was love at first sight. The two were immediately taken with each other. She gazed at him and he talked to her and Corey’s co-worker watched and said that she knew that Cleo had chosen him. So for a bit we just sat there and sized each other up. Corey was glowing. I’m sure I was too. I just didn’t exist. Cleo got off the railing, approached Corey and proceeded to circle his legs while brushing them with her tail. After one circle, she jumped in his lap…and Corey melted.

It was then and there we knew we were taken. That was it.

We were Cleo’s People!

And thus started a wonderful journey with our Cleo Kitty!!!!!

I love her so much!

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CHRONIC DISRUPTION

CHRONIC DISRUPTIONS

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

I have decided I need to just call them that.

CHRONIC DISRUPTIONS.

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

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

And all of it is  COMPLETELY AND UTTERLY UNPREDICTABLE.

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

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

Most often I just have to stop EVERYTHING.

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

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

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

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

WELL GREAT.  INSERT/SHOVE NEWEST DISRUPTION HERE.

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

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

TALK ABOUT OVERWHELMING!!!

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

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

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Nahleen.com Is Expanding!

Yay!  I not only have a Facebook Profile now but I also have a Facebook Page with the same name, “Nahleen.com”!  I have now made my whole Profile public so feel free to join in the fun!  I have really enjoyed sharing all kinds of beautiful photos, other pages, inspirational quotes, silliness and anything else I can find on my own Personal Page.  I was sharing what I found personally helpful.  What has happened is that I have found out from all kinds of people how much they really like what I share compared to what else they can tell I look at.  That what I post really helps them.

I just knew it was time!  So here I go!  You can find me at: http://www.facebook.com/nahleen (Personal)–feel free to friend me and tell me and please introduce yourself (if you’re not already a Facebook Friend)–and at http://www.facebook.com/nahleencom (the actual Page connected to this Blog).

I’m very excited!  Please join me!  I look forward to connecting with you!

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I GOT OUT!

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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