Don’t Get Too Used to It

“Don’t get too used to it. We doctors don’t want you to get the wrong idea. I mean you might expect us all to be ready on time and I’ll get in trouble”, my spitfire Cardiologist quipped as he walked into the Exam Room right on my heels.

I had just mentioned to him that I’ve never had a doctor so ready to see me in the Exam Room. Just before, the Medical Assistant and I noticed that my doctor was RIGHT behind us. I mean, RIGHT behind us as he followed us into the room. We both said hi to him and he said, “Hi. Don’t worry about me. I’ll do my best not to run you over. I suppose I could race you into the Exam Room if you like.” We chuckled and that’s when I noticed and commented on his LACK of tardiness. “Wow. I don’t think I’ve ever had a doctor almost beat me into the room and be ready to get going”.

After the small talk, he stayed in the room and the Medical Assistant hadn’t even had time to check my vitals, my blood pressure and pulse rate and he was already asking me questions. Well that was another first. She was checking my blood pressure while he was making a call on his phone to some automated system we all got to hear on speaker phone and he continued to multi-task while my arm was squeezed in the blood pressure cuff and he started asking me questions. You know, the old me (the Nahleen who hadn’t gone to that many appointments years ago) would not have been able to deal with that and I have a feeling my blood pressure would’ve skyrocketed through the roof but you know what? I just went with it and somehow my blood pressure was a better reading than it’s been in quite awhile. However, my pulse rate was high but wouldn’t your’s be with all of that hectic silliness?

So with the slightly high pulse rate the Cardiologist asked the Medical Assistant to do an EKG and she sort of motioned for him to leave the room and he actually did and had no problem with it! The Medical Assistant talked to me during the whole procedure about my name and where it came from and how exotic it sounded and that I must be so “exotic”. Hmm. Well that was a new one. Don’t think I’ve ever been thought of as exotic and I joked about that and told her her it must be the purple hair talking because being that I’m caucasian and she wasn’t (her name was Bing–found out later as I was leaving and she said, “You know, like Bing Crosby?”–and I thought that was so cute) and I’m from New Hampshire I didn’t feel too exotic. I did tell her I’d just go with it. Sure, I’m exotic. Okay. Thanks. With all of this chatting I think it helped me to calm down quite a bit. I told her I have a long history of “white coat syndrome” and although I’m much better about those darn white coats (she was wearing one too) they still get to me and she laughed and said, “Well my doctors have a habit of doing that to my patients. It happens all the time.” She was really sweet.

After the very painless EKG, I was ready (I ALWAYS have to be ready. Working on that but I can’t help it.) to have to have more tests done and the doctor came in, listened to my heart, listened to my lungs and asked me what else he could do for me. (By the way, that call that was on automated hold he told me was a call to make sure he was still on for his scheduled surgery–on someone else’s heart–this guy rewires hearts for goodness sakes–and he apologized profusely for making this call while in the appointment but he needed to make sure to be on “these” people to keep them “on time” for 1:30pm. This guy tries really hard to be on time. By the end of the call he was still scheduled for his “case” as he called it and all was running smoothly.) I told him that my Neurologist (he knows him well) was concerned because I had been taking the newer medication for my multiple sclerosis (and the only medication for MS in pill form–incredibly monumental), Gilenya, and that there had been some deaths while other patients had been taking it and that my Neurologist was insistent that I see him (this Cardiologist) and only him to follow-up and make sure I’m okay to continue taking it. On a side note, I sure as heck was hoping I was okay because my only other option was to take an injectable every day and I can’t stand needles (even after 8 years of injecting every other day with another MS medication–I’m sure I’ll get into the medication conversation about MS in a later Blog. I could go on and on about it actually.) and I was trying to avoid that. However, I didn’t like that people were dying while taking Gilenya either. Just a little scary. Then again, my MS health has greatly improved while on it for over a year and I really hated the idea of going off a medication and risking more of a progression or worsening of symptoms with multiple sclerosis. That idea sucked.

The Cardiologist quickly pointed out that he’s known Neurologists to be pretty neurotic (jokester) and that the problem with this medication is that it’s still pretty new in the medication world and because of that there is no real data to pull from when the patient dies while on the medication and unfortunately these people can’t tell us anything and it’s not like they’ve been using a heart monitor 24 hours a day every day to see what’s been going on. Gilenya can cause slow heart rate and that is already known. There’s a big medical review going on to find out if the poor people died from the medication, it’s a coincidence, or if it’s a combination of a bunch of different things. So while the review is happening with the medication, my doctor is making sure all of his patients on Gilenya have their heart health reviewed. Makes sense to me. It’s nice to know if my heart is healthy or not. It’s nice to have a heart.

Anyway, I am cleared by the Cardiologist to keep taking Gilenya and all is good to go! My Neurologist really trusts this doctor so I believe that there are no more obstacles in the way and I’ll be able to move on with my life. I will find out more about that in May when I have an appointment with him. For today, I’m all good! And this guy is so cool and funny that I felt comfortable enough to exclaim, “Woo hoo! No other tests?! I’m clear?” to which he replied that I was okay to go and cleared and he would let my Neurologist know he was not worried about me. You mean I don’t have to do an echocardiogram or wear a heart monitor for 24 hours? No way. I had seen him a year ago to have all of these tests done as a baseline to make sure I could even start the Gilenya MS medication in the first place. And yes, I had to do the extra tests. It was okay. It was nice to know how my heart was doing. I was just so tired of it all (especially at the time) and it felt like such a hassle.

Another neat thing about this doctor is that he made it so easy and distracted me so much in the beginning that I was able to forget how uncomfortable I was in the waiting room. This waiting room was supposed to be designed like a living room decorated with darker walls and plush sofas and chairs with refreshments to drink if we wanted. Somebody really did put a lot of thought into it. I thank them. However, the Receptionist’s Desk was right there just outside the carpet of where the “living room” was supposed to start and I believe she was supposed to be centrally located and she was so loud and so forced into her friendliness and clearly so stressed that it was hard not to have that stick in my butt that she seemed to have. I did my best to stay patient with her and have some compassion because it is clearly a very high stress job but I’ll admit it was hard at times. Plus she was working on a new digital system and everything had to be re-entered so that must not have been fun either. And you know what was kinda neat was that she thanked me quietly for being nice. And then I hate to say it but I’m in my mid-30s and I go to the doctor with a bunch of elderly people. Don’t get me wrong. I like all ages of people but sometimes I just want to feel like I’m not the only mid-30s person with health issues. It can get kinda hard and depressing.

Otherwise, it was a pretty darn good doctor appointment and a pretty darn good afternoon. I took a nice walk afterwards in the beautiful weather and ate a good lunch. Now I’m home writing this. Things feel positive.

I just can’t help but think about what the Cardiologist said and what the title of my Blog is, “Don’t get too used to it.”. I want to. I want to get used to things going well. I have been trudging and struggling on this path of recovery in this more recent downswing (slowly inching towards better) for almost two years and I’d like it to keep getting better. I have hope.

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Victory!: Snickerdoomolasses Cookies!

Look at what I baked today!  These are what I call Snickerdoomolasses Cookies!  They are a yummy mistake!

Smelling yummy!

Looking yummy!

Yummy Everywhere!

When I feel up to it and the time is right, I LOVE to bake!  It’s great to get in there with my hands and make yummy art.  I am a very creative person and if I am not expressing myself enough I feel it.  Baking is a wonderful way to release stress and it is also very helpful for my stiff and achy hands to get moving.  With multiple sclerosis and lupus I’m not able to bake as much (takes up a lot of energy and when fatigue is present it turns into a chore instead of something good for me)  as I’d like or to bake from scratch that often but I’m an old friend of Betty (you know, Ms. Crocker–I’m guessing you’re familiar with her), Duncan (of the Mr. Hines sort) and the cute little white doughboy and they have helped me a lot.

What’s so cool about today is that I made an Oops by adding WAY too much butter to the molasses cookie mix and I didn’t give up everything and let it ruin my day.  I remembered I had a snickerdoodle cookie mix in the cupboard too and I added some of that which saved us all from a disaster!  It came in with its cape blowing in the breeze and added what it could to the dough.  Isn’t that nice?  Thanks to me, your Saturdays have not been ruined by my baking mistake (gotta love how I think I’m the only one who’s ever made a mistake baking or cooking) and I have come up with a new cookie.  Introducing the Snickerdoomolasses Cookie!

And are they in fact yummy, you ask?  Well, it just so happens that as I was moving the cookies to the plate one of them broke and we couldn’t have that now could we?  So, I tried it and it was yummy…it was melt in your mouth yummy (you know, just a LITTLE bit of butter had been added in the beginning…)!  Victory!  Go me!  It worked!  It is so satisfying to try something and have it work out.

I think I would also like to note that I’m feeling better today than I have in awhile.  The MS and lupus have been kinda quiet for me so far.  I’ll take whatever I can get.  And again, go me!  Another victory!  Gotta focus on the victories where I can find them and stockpile them for use on harder days.

That’s my good news for the weekend.  Looks like Saturday is working out so far.  Yay!  Hope you all have a great weekend!  And many many thanks to those of you who are reading my Blog!!!  You are all so awesome!!!

 

 

Categories: Uncategorized | 2 Comments

Moments of Peace

As I’ve gotten older I have found that I look for more and more moments of peace.  I need those times when I can take a deep breath and feel some quiet in the moment.  One of my favorite things to do is go up to the sun deck of our apartment building and watch the sky.  I feel most connected with the sky and with nature.  It’s also really neat to look at the world from a different point of view.  On clear days I can look west and see glimpses of the ocean or I can look east and see the Hollywood sign and the hills surrounding it.  It’s also really cool to watch the planes land south of us at LAX.

It finally occurred to me that I could take pictures of what I see and share them with others.  So just about every day I make it a point to go up to the sun deck, take some deep breaths, get some perspective, and take some pictures to share.  And if I don’t make it up to the sun deck, it is now so ingrained in me to look at nature and my surroundings wherever I am and to take pictures and continue to share them.  There’s a whole world out there to see.  Why not share it?  These meditations have helped me so much when it comes to dealing with the stress of multiple sclerosis, lupus and life in general.  It helps me to remember it is not all about what is going on in my head.

With that being said, here’s some moments of peace I’ve been able to find in the past week:

04/07/12 My view from the sun deck as day turns to night.

04/08/12 My view from my balcony as morning arrives.

04/08/12 My view from the sun deck as day turns to night.

04/09/12 My view on my walk today.

04/09/12 My view on my walk today.

04/10/12 My view on my walk today.

04/10/12 My view on my walk today.

04/11/12 My view from my balcony as morning arrives.

04/11/12 My view from my balcony as white puffy clouds float by.

04/11/12 I love my purple tulips!

04/11/12 My view from the sun deck as day turns to night.

04/11/12 My view from the sun deck as day turns to night.

04/12/12 My view on my walk today.

04/12/12 My view on my walk today.

Do you have any moments of peace you’d like to share?  If so, I’d love to see them.

I hope you all have a really nice weekend!

Categories: Moments of Peace/Pictures | Leave a comment

Introducing Purple-Haired Me!

Hey that's me with Purple Hair!

Hi.  Yep.  That’s me.  There I am standing on the sun deck where I like to go and take sunset pictures almost every night.  I bet soon I’ll be posting them on here soon.  Don’t mean to do advertising for some other companies in this picture but they’ve been there for me all these years.  You know.  We go way back (been living in this current abode for almost 8 years I think).

Yes, it's a purple hair shoot! I love my purple hair!

It sure was windy that day!  My goodness.  This is another angle of the sun deck.  I know you were all wondering.

Crazy purple curly hair! Can't help but love this picture.

Holy Windy!  This is probably my favorite picture of the shoot.  Gotta love the wacky curls and those purple streaks.

Disclaimer: Purple washes out quickly so I need to re-purple every week.  Thankfully it’s not a hard thing to do or you can bet your booty I wouldn’t do it.  The neatest thing about it is that the purple hue changes every time I re-apply.  Helps keep it fun and reminds me that change is always in the air!

 

 

 

 

 

 

Categories: Uncategorized | 4 Comments

It’s an ’80s Kind Of Day…

I’m feeling pretty sad today.  Sending out lots of love.  I know some people who need it.  I’m thinking I need to save some love for myself too I guess.  On sad days I find that my immediate remedy is ’80s music.  That usually helps.  And so, because I’m not in the mood to write more here is a list of 5 of my old favorites.  Thought it would be fun to share them with ya!  What are your favorites?

1. Tainted Love By: Soft Cell

I don’t think I’ve ever seen the video before.  I’m kind of scared now.  Love the black eyeliner but what on earth are those wing things in his hair?  And what’s with the mini skirt he’s wearing?

2. A-Ha: Take On Me

I mean who doesn’t love this video?  It was so cool for the times.  The animation rocked!  Not sure if I’d be freaked out that an animated hand was reaching out of the book at me or not…I mean if he was cute…anyway, the idea of going between both worlds is classic. And don’t we all just wanna save the sweating cute guy at the end?

3. Starship: Nothing’s Gonna Stop Us Now

OK so Starship used to be Jefferson Airplane but who cares?  They sang a song I just loved way back when for one of my favorite ’80s movies, “Mannequin”.  Loved seeing the old clips from the movie here in this video and hey, they’re even cooler because they “look” like they’re on the movie set at times too.  And wait, are those mannequins of them or are they REAL?

4. Michael Jackson: Billie Jean

I just had to add this one to the list!  Michael Jackson defined the ’80s.  And who doesn’t remember this Billie Jean gal blaming Michael Jackson and saying he’s “the one”?  Of course, I was a kid at the time it came out and had no idea what he was being blamed for but I didn’t care.  Billie Jean IS NOT his lover!  OK?!  Brilliant aspect of the video: everywhere he steps the floor lights up underneath him and then the bed lights up too?  I tell ya the spotlight was on him from then on wasn’t it?

5. Cyndi Lauper: Girls Just Want To Have Fun (or to put it better: Girls Just WANNA Have Fun)

That Cyndi.  Always causing trouble wanna-ing to have fun with that crazy hair and funky make-up!  Don’t think I remember all those silly graphics in the video.  I think I wanna be in a video and sway back and forth the whole time.  And would you look at that?  Don’t we all just wanna have fun?  Look at all those people dancing.  Hey, who’s that “normal” guy coming to see her with flowers?  Don’t think I remember that part either.

Hope you enjoyed my trip back in time.  I know I did.  I needed that.  Do you have any you want to share?  Please do.  I love seeing old music videos.

Categories: '80s | 11 Comments

Don’t Be a Party Pooper

“Do-be-do-be-do-be-do…” the woman serenaded with a flirty flair on the Jazz Station at the Dentist’s Office. She went on to sing smart and witty words as the ensemble played and all I can remember is “Don’t be a party pooper…do-be-do-be-do-be-do” and I believe that was how the “do-be-do’s” went.

And thus was the theme at my Dentist appointment today. Nahleen, don’t be a party pooper. Is the Dentist a party event? Om, no. But it can feel like a party when all goes well with your cleaning and you’re sent on your way. Doesn’t really happen with me these days now that I have multiple sclerosis and lupus.

When I was a kid it used to be that going to the Dentist for me was a breeze. I was a very lucky fortunate kid who didn’t have to have braces and I usually passed my Dental exams with flying colors. Yes, I always had to be the perfect student (still working on that but that’s another Blog for another day). Anyway, I’d get my little kiddie prizes (Where do they disappear to as adults? What prizes do we get? More toothpaste, toothbrush and probably a message to “floss more”? Hmm. Some prize.) and be on my way till 6 months passed and I’d go through it again. Only a few times did a big scary German lady (can’t help it, that’s my memory as a kid) get almost mean with me and accuse me of not flossing (“Yes I did! So there” the Kid Me would think.) and then show me with a mirror how much my gums were bleeding because she chose to be rough with me. Well, at least that’s what it felt like. And then I’d still get my prizes and be sent home only to have lingering justifications about my flossing the rest of the day (and apparently now since I’m still talking about it). Otherwise, it was pretty much smooth sailing. Even as I got older and my wisdom teeth grew in (ow), they grew in straight and grew in well and no one touched them. To this day I still have ALL 4 wisdom teeth. That has to mean I have a lot of wisdom. I just know it.

Now fast forward to being an adult at the Dentist, everything has pretty much gone well. Turns out I grind my teeth (Hmm, stress?) and I wear a night guard. Plus I have a hard time keeping up with the maintenance of those wisdom teeth way back there so I’ve been reminded again and again to be careful back there but any issues have gone away. Well they went away that is until a few years ago when I had only been diagnosed with MS (those were the days) and didn’t know yet about the lupus. I’m pretty sure I remember my Dentist noting that my gums were inflamed and red and that they did bleed and he didn’t know what to say about it. He didn’t think I had anything serious going on and I’m almost definite that he asked me something like, “Are you sure you don’t have lupus?” and I was like, “Yeah I’m sure. Nope, I don’t have it.” Well now wasn’t that interesting…

Then almost two years ago when I was diagnosed with lupus and I told my Dentist about the new diagnosis, he started looking at my gums and said that now it all made sense. My gums were swollen and inflamed because I had lupus and I was having a flare. Plus, I found out that these gum and mouth symptoms are not just signs of lupus BUT they can also happen FROM the medications I’m on and specifically the ones I take for a lupus treatment. Well isn’t that GREAT. Awesome. Gotta love that the medications that are supposed to help you in some ways can harm you in others. Happens to me all the time. So he told me I probably have the symptom of “dry mouth” (can’t think of the official name right now) and that he’d recommend I use the toothpaste Biotene which is used for dry mouth and hopefully that would help. I’m still using that to this day actually. Thank goodness for those types of options now. And then he thought my teeth were getting worn down in the back of my mouth so he prescribed a dental toothpaste called Prevident to help with that and help strengthen my teeth. I was not happy I’d need a doctor prescribed toothpaste let me tell ya. I had no idea it existed and here I go again. More stuff to add to the regimen. Well, after I got over that next idea of what I thought a burden was (not so much a year later) I found it actually did help and my Dentist/Hygenist started becoming happier with how my teeth and gums looked in general. Well yay! Go me.

And finally getting to today the appointment went well. I don’t like to go now that I have issues and am not even close to perfect (Geez.) and because physically with lupus and MS it’s hard to hold my jaw open for that long and it starts to shake. Plus it might get stuck being open and it hurts. If my gums are inflamed then that’s no fun either. I’ve learned I have to speak up to the Hygenist/Dentist as much as possible about what’s going on with me to help alleviate any mental/physical discomfort. Turns out I had a new Hygenist after having the same one for at least a couple of years and I was like, “Well great. How will this one be? Will she be another scary German lady? I guess now I’m gonna have to go over ALL OF MY HEALTH HISTORY AGAIN with someone else…” I was only Ms. Grumpy Pants for just a bit about it because the new Hygenist was very sweet, charming and tried really hard to make me as comfortable as possible after I talked to her about everything. Plus when I had to do x-rays (Ack! So hard not to gag!) she was quick and tried to do a mini guided imagery with me, “OK. Now breathe through your nose. It’s only gonna be a few seconds. You’re in Hawaii right now.” That idea of being in Hawaii with x-ray thingies in my mouth didn’t really relax me but the idea that she was trying was very sweet. And then we travelled to “x-ray Bahamas” and “x-ray Italy”. Plus she joked a lot (She and I had heard the flirty crooning woman sing “Don’t Be a Party Pooper and had quite a giggle about it. Don’t recommend giggling with dental utensils in your mouth by the way.)and kept telling me to take a break if I needed to. And no she didn’t shove a mirror in my face to show me what I had supposedly done wrong. She was compassionate about it all. And then to top it off she really started my party going by saying I was doing an “Amazing job” working on my gum and teeth maintenance and that everything looked really good. So yay me! Woo hoo! Time to party! Good news!

AND THEN the Dentist came in to do my exam. He’s a funny guy. Pretty jokey himself. Quite a jokey office now that I think about it. Anyway, he too has lupus but the skin kind (can’t think of the name of it) and thinks of lupus every time he sees me. Weird to have that connection. He looked at my x-rays and really studied one slide I couldn’t see (Gawd!) and then told the Hygenist to make a “Note” at “17 blah-blah-blah (you know, teeth and dental talk)” and just to make a “Note”. Uh oh. Red flag. But then I forgot the red flag because he was worried I might have some weird thing going on with what I thought were just mega-chapped lips and that was another foreign word name and I got distracted and suddenly my party was deflating…there goes the balloon fizzling out of air. I think the Dentist saw I was getting worried and quickly said not to worry and to just keep an eye on my lips and we’d go from there. He really didn’t think it was a big issue. Really. Seriously. It was okay. (Now that I think about it, what did I really look like for him to try to cheer me up so much?). So when he left I remembered I didn’t ask about tooth number “17” and the Hygenist said that it was my lower bottom wisdom tooth (cue dramatic movie music) that might be forming a cavity and that they were just going to keep an eye on it. Oh. Great. So nothing to worry about now but maybe for the future.

That sounds about right doesn’t it? Not only does that sound like what I go through all the time when it comes to MS and lupus but isn’t that what life is? That idea of perhaps something might be a problem in the future is very scary. I go through the process of letting go of that fear all the time. However, it still bothered me. I’ll be honest. Yeah, I’m okay. Everything is okay just for today. I think the real point is what that savvy woman sang to me (and only me because I rate) “Don’t Be a Party Pooper”. I can still have a party because I’m me. I can still have a party because both the Hygenist and Dentist didn’t see any real issues to address now. I got to leave without having to add anymore medications to my daily regimen (and let me tell you there are more than enough), I didn’t need to schedule an appointment to fill a cavity, my teeth got cleaned (and I’m so grateful for dental benefits right now) and I heard what was really a very silly jazz song that I will now leave you with:

“Don’t Be a Party Pooper. Do-be-do-be-do-be-do…”

Categories: Appointments | 5 Comments

Nana’s Easter Jelly Bean Contest 2012

I loved my Nana bunches. She was a really neat lady.

She had this really fun tradition every year at Easter. She’d have a jar of jelly beans we couldn’t eat just because they’re yummy and she’d make us work to get them. And usually only one of us would actually get those jelly beans. If we were lucky, we might be able to get some jelly beans from the charitable winner if we didn’t win them.
What we’d have to do is guess how many jelly beans there were in the jar. And if we guessed closest to the actual number (there was a serious count after all the guesses had been recorded) without going over, then we won not only the jar of jelly beans BUT there was a First Prize. And whomever was furthest away from the number would get the Booby Prize.

Now sometimes the Booby Prize was better then the First Prize so it was hard to decide if you wanted to purposely lose so you could get the Booby Prize. I mean, it was serious. Other times, people were just WAY OFF and had no idea what they were doing. It was fun.

Over 12 years ago when Corey and I moved to Los Angeles, CA from the east coast, I continued that tradition and have been doing so ever since. It’s a little bit challenging since our family isn’t here with me and they are all still on the other side of the country, but I make it work. I do change it up a little at times. Sometimes it isn’t a jar but a different type of container. Most of the time I mix in different types and sizes of the jelly beans so you never know just how many are in that jar.

This year we made a little video (not sure why it’s so pixelated but apparently we aren’t perfect) for our families across the country so they could really see the details this time. Cleo Kitty also gives us her Greeting (hmm–is she really Greeting us?) and my Purple Hair makes an appearance. It’s very exciting!!

What was also cool was that I had a body crash Saturday night. My body and mind decided they were all done. No more. Doesn’t compute. Over-stimulation was running rampant. I felt pretty crappy. And so on Sunday I wasn’t sure how I’d be feeling for anything and what’s great is that I was feeling a bit better and putting this Easter Jelly Bean Contest together helped distract me just enough. It was fun! I’m happy to say that today, Monday, I’m feeling even a bit better-er. I hope it continues. I like it when I feel better.

Anyway, for your viewing pleasure, here is the Easter Jelly Bean Contest 2012 video. Thanks Nana for such a neat tradition! I love you and miss you so much.

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I Have an Appointment With Me Today

I don’t know who this Me person is but I hope they’re nice. I know how “Me”s can be. They can give us lots of pressure and push us to do things we might not be up to. They can say mean things to us and somehow get into our heads. They can be indecisive and moody. I mean moody. I hear this Me person has been quite moody all week.

Then again, “Me”s can be loving and nice and fun. They can be a good companion and give us love. I’ve heard this Me person puts fun colors in her hair and can be pretty cool. Word around town is that she giggles a lot too. You know what? I bet it’ll work out okay.

I KNOW it’ll be okay. Why do I know this? Because that Me person is, well, me. I am me. I talk about myself in third person because it is very easy to forget me, to sometimes get separated from me and leave me out of things. That leaves me very unhappy, feeling lost and disconnected. I’ve found that if I don’t give myself some time to just be with me and love me for who I am then I suffer. Sometimes that takes me actually making the effort to make an appointment with me so that I can commit. I don’t feel like a whole person if I don’t at least try. I feel like someone who spends all of her time dealing with multiple sclerosis and lupus. And along with that comes a crazy amount of doctor appointments, endless medical business phone calls, endless administrative medical business, regular life things, exercise and resting for recovery.

There is a whole other part of me. I like movies a lot and would love to produce more of them. I read lots of books like Game of Thrones and Hunger Games. I like to get out and be with nature while gazing at the sky. I love the color purple. I love my Cleo Kitty, my husband Corey, my family, friends, connections with others, and the list goes on and on. To me there’s nothing like being artsy and exploring a new area. Or how about live music shows? And that’s all just the beginning.

And you know what’s also awesome? Sure, I feel tired today. It’s been a long crazy week filled with emotions and lots of activity (Physical Therapy is an example) and of course I’d be tired. For the past two weeks I haven’t been able to get out. Sure there’s been some time with me but it’s the getting out with me that brings it to a whole new level. This time it gives me a chance to escape from my crazy head. There is a whole other world out there. I get to be more of a part of it.

So what am I gonna do today? I’m gonna get off this computer, pull myself together and FINALLY (as if it’s been out forever) go see the movie The Hunger Games! Yep. So here I go!

NEXT UP: An Appointment With Me!

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Motivation: COOLER WEATHER!

So I woke up this morning and I was like, “Hey! I can do this!”. My head was clearer and I felt more positive. I was definitely more relaxed and at ease. My body was even like, “You know, I might be able to do this too.” We agreed we’d try to work together to have a better day.

What changed? Well, yes, after my Blog post from yesterday I received so much neato love to hold me up and I knew my peeps (all of you included) were with me. I also kept letting me have challenging feelings (so hard–darn feelings) like the sadness, turmoil, grief, anger and all the stuff that goes with that and it helped. I also talked about it with some loveys I trust and that helped too.

Can you tell I’m feeling a bit better? I’m using my own words from the Nahleen Dictionary of Language (where all things that come out as words are official words) like neato and loveys. You know. Of course they’re words.

ANYWAY, I also tend to go off on silly tangents when I’m feeling a bit better…

SO YEAH. Back to the subject at hand:

COOLER WEATHER. COOLER WEATHER. COOLER WEATHER.

I CANNOT stress it enough. COOLER WEATHER is the answer for relief with my multiple sclerosis and lupus. Seriously. It’s not the answer to the world’s problems and it doesn’t stop me from having my bad times or getting stressed out, but I can function so much better. There is hope. I think I’m gonna make it. In fact, I know I’m gonna make it.

Now Los Angeles, CA folk are probably going to think I’m crazy for saying it’s been oh so much warmer the past few days. What can get frustrating for my health is that I have something called heat fatigue. It is a major MS symptom of mine and it sucks. It takes NOTHING for me to overheat. In fact, this COOLER WEATHER I’m talking about now might not feel like it to me at any moment but right now it does. My MS decides when it’s hot. People could be wearing parkas and I could still be hot. I’ve now learned a lot of that has to do with the sun for me too. When it comes to the lupus part of my body, I’m very very sensitive to the sun and what happens is that the sun makes me hot and makes me extra sensitive and feels double hot acting as a conductor and then the MS says, “I DON’T LIKE THAT! I’M GOING TO ACT UP!” and then MS symptoms like fatigue, pain, tingling, weakness, even more brain fog, and you name it start revving up and I’m in trouble. And then what happens is that I don’t even know it’s happening sometimes because life is happening and I’m in the middle of feeling all of it and I’m like, “What’s wrong? What happened? Why can’t I do more? Why am I so tired? How can I fix this?”. It’s really hard to identify but once I do, it hits me in the head again, “Oh yeah. Here we go again.”. Gotta be careful. Gotta be in the dark a bit more. Gotta get away from the sun (sad…I like the sun sometimes) and gotta get me some water and AC.

AC is my best friend and has been known to make our apartment like a freezer but more on that in another Blog. My husband Corey might even be invited to write his own Blog about how he feels in the crazy AC during the sunny summer season. I think he’s had icicles hanging from his ears at times because it’s been so cold and yet sometimes it’s still not cool enough for me.

So today I’m gonna enjoy the COOLER WEATHER while it lasts outside and while it lasts inside of me. It usually means I have more motivation and I can do more. I feel like a different person. The weight of the heat is not lingering heavily on me or inside of me. There is some relief.

And so to sign off:

COOLER WEATHER. COOLER WEATHER. COOLER WEATHER.

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TRUDGING IN FEELINGS

Ugh. I don’t want to do this anymore. I don’t want multiple sclerosis or lupus. I don’t want to wake up and try to get through another day this way. Why won’t it just all go away? I want it all to leave me alone! I’m busy!

All of these feelings just keep stirring up in me lately. I have a good idea it’s from writing these Blogs and sharing myself and digging it all up. I know it’s for the best. I know it’s healthy to feel. But it’s a lot. It’s overwhelming.

I find myself in these waves of feeling sorry for myself. I start to cry and I’m not sure why. I still have tons and tons of grieving I feel. The grief feels endless.

When I was 25 I had my life ahead of me. This was it. I was invincible. Nothing could slow me down. Go go go. Push push push. I wanted more and I was gonna get it. You name it. There were no limits.

And then life hit me in the face, in the body, the whole ego. I was knocked down. It was more mental at the time. Yeah physically I felt crappy but I wasn’t too aware of it because I was the energizer bunny and I had some major denial. I couldn’t believe I’d have to have an MRI. I couldn’t believe that the MRI technician would look at me as I came out of that AWFUL tube as if I was going to die. I couldn’t believe I would have to be rolled out to see my sister and my husband in the waiting room in a wheelchair. I couldn’t believe I was alerted to call my doctor the first thing the next morning and it was very important I do so. How did I sleep that night? I doubt I did. I was completely freaked out. I couldn’t believe it the next morning when the doctor called and told me to get to the hospital now because there was something SERIOUSLY wrong with me and she was really worred. I am truly grateful that my sister was there visiting (soooo sorry to this day that her trip was completely altered by this situation) and she helped me get through it. And then to see my husband at the hospital helped so much. I lost my innocence then. That was it. WHAT WAS WRONG WITH ME? WHY WAS THIS HAPPENING? WHAT DID I DO WRONG? HELP?!

At first they thought it was a brain tumor. Then they thought it was a brain infection. Then perhaps it MIGHT be MS. Those were the 3 longest days of my life in that horrible hospital.

AND IT’S BEEN ALMOST 10 YEARS SINCE…

How did that happen? I never thought I could face another day. I didn’t know how time could pass. I was so horrified and traumatized by the entire experience. I felt weak. I felt defective. I wanted to run away from me.

But I didn’t. Somehow I didn’t. I’m still here with me. I have a wonderful husband who never left me. He has taught me how to be with me. I have loving family and friends and a major support network who has held me together. I’m still trudging on my path and along the way I picked up another disease, lupus. I still have so many of these painful feelings. I still feel weak sometimes and very much like a burden. I still feel defective. I still feel so much grief from new things and sometimes it’s the moldy kind that’s been sitting in me very down deep in my soul. Some of that is definitely coming up now.

I don’t want to do this anymore. I don’t want to have to deal with it but I will. Why? Because I don’t like the other choices. I either live with it or I don’t. And somewhere along the path I have learned to slow down enough to get to know me better, to stop and smell a flower, to look up at the sky and gaze at the clouds (and they always bring me some peace), to talk to a friend, to smile and connect with a stranger and to put one foot in front of the other. And for all of these things I am truly grateful…

Thank you all for reading. This was a hard one. Sometimes it feels like a big emotional hairball that just needs to come out. This was one of them. And I am feeling some relief now.

I guess I gotta just KEEP ON KEEPIN’ ON!!

Trudge trudge trudge.

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