Heel 2nd Toe

Heel 2nd Toe.  Heel 2nd Toe.  Heel 2nd Toe.

That’s what I had to chant to myself (and will need to TRY to do and REMEMBER to do from now on) and guide myself to do as I did what my Chiropractor called, “drunk walking” (because it’s easy to lose my balance when it’s so new) down the street to train my body how to walk correctly and in the right alignment.  Apparently my walking alignment is way off so I get to do what feels really hard to do.  And so AWKWARD.  A friend of mine loves using the word “Awkward” so I hope she appreciated me using it here in this post.  ANYWAY–When I’m walking I’m not supposed to be using my Big Toe to guide my walking.  I’m supposed to use my 2nd Toe next to the Big Toe and also focus on my hips to guide my leg out in front of me to land on my Heel and with the foot turned in (only what it seems like to me–it’s actually not in…it’s just not too far out and walking like a duck anymore…) and that’s my newest exercise.  Weirdest part is that when I stand “right” and look in the mirror what FEELS so wrong actually does look RIGHT.



It’s hard to train a body to move differently after it has been doing probably the same movement for almost 36 years….

So I’m trying to be patient. He had me take a walk up and down the block doing that.  I asked him if the residents on the street where his office is ever stop in and ask him what is going on in here and why are there people doing all kinds of strange movements walking down the street.  He said NO but he’s sure they talk about it amongst themselves and try to figure it out.  “Keeps their minds going…”, he chuckles.

I bet.  So I did just what he asked me to do.  Of course there were people out and about.  Don’t mind me.  Just walking totally off balance…  It was a beautiful sunny California spring day.  The birds were chirping.  There was a lovely breeze blowing through the leaves.  Flowers have been in full bloom.  I was sure EVERYONE ever was staring at me but I’m guessing they weren’t.  And if they were, I hope they had fun watching me.  I didn’t look as wobbly after awhile but I was walking really slowly almost in a walking meditation and really focusing on what I was doing.


My overall body felt much better walking the “correct” way.  I was surprised.  As much as my hips started aching (who knew hips were used so much with walking?), certain muscles in my legs that I didn’t know existed started yelling at me, I kept going.  I’d let myself stop, take a break and shake it all out but I’d start up again.  It really did slow me down and it was quite relaxing at times…Definitely could be a meditation if it wasn’t so distracting at too.  Sometimes I’d be distracted too and find that I was back to my old walking so I’d start up again.  Going that slow I was able to see the colorful vibrant flowers I walked by, to see more birds flying around me because I wasn’t moving so fast, a butterfly and to REALLY HEAR the breeze. That was a gift.  I’ll take it.

I’m trying to remember this so that when I wake up tomorrow morning and wonder why on earth my legs and hips are aching so badly I’ll be reminded of the “new” walking I had been doing and will have to try to do from now on and then hopefully I’ll be reminded of how peaceful it was at times.  There were some truly quiet moments…


Otherwise, he stretched my body in ways I didn’t know it could stretch today and he also gave me even more homework to FIGURE OUT what the MAGIC word was to get my hips to RELEASE and LET GO.  He said the word RELEASE doesn’t work for my hips.  He’s even tried others (I had no idea he was doing this I was so focused on what was going on) and they didn’t work either.  Soooo, he’s asked for help in figuring out what the MAGIC WORD is for helping my hips and torso to RELEASE.


Silly guy.  Felt like I was back to being 6 and an adult asking me, “What’s the Magic Word?”.  The thought crossed my mind that perhaps he should say, “Pretty Please?” and then maybe my mind and my body would finally RELEASE and LET GO…

So yeah.  Good appointment.  Doing OK so far.  Feeling a bit of the walk and a bit more lightheaded as the day goes on.  So I should probably stop writing, finish up my day and get to resting.  Never know what mental and physical symptoms are going to show themselves with these treatments…

Oh and by the way, I get to stay up as long as I want if I keep getting the late night energy that tells me I don’t need to sleep.


Me in the mornings…

BUT–That’s what my body keeps asking me late at night.  I’m becoming quite the night owl.  I’ve been concerned about this because I need my sleep but when I told him today he was excited that I was starting to get ENERGY BACK.

“Yay!”, he exclaimed as I told him.  “Take advantage of it.  Don’t suppress it.  This is actual ENERGY.  Take the time to do some sit-ups (Ha!), some push-ups (Ha!), some walking around your apartment, some dancing…something.  Find an outlet and some activities to do when this happens.  Your body is resetting it’s cycles and rhythms.  I know you need sleep.  I’m sleep’s biggest advocate.  BUT your body isn’t ready for sleep like that just yet.  At least not at night.  It’s just learning how to be again.  LET IT!  DON’T WORRY.  DON’T PUNISH YOURSELF FOR NOT SLEEPING.  USE IT!  I bet you’re not sleeping well when you have this energy right?”

I told him no.  Definitely not sleeping well.

He responded with an encouragement to use the energy so that I could sleep better and it would be able to even out eventually.

His whole point was that this is like a “RE-START BUTTON”.

My body is RE-STARTING…


Hmm.  Cool.

I’ve been saying off and on over the years that I needed a Jump Start at times.  I guess this is my chance.

And now back to the chanting…



Categories: Appointments | Tags: , , , , , , , , , , , , , , , , , | Leave a comment

WHOA! Chiropractic Treatment is CRAZY…but good…I Think?!

Gonna keep this short because I’m supposed to be resting and finishing up here but I wanted to share with you all that I had my first Chiropractic treatment today!  Oh…and I SURVIVED!

CRAZY STUFF that mode of therapy.  My body was twisted, stretched, beaten, shoved, poked, vibrated and manipulated into numerous positions I DIDN’T KNOW existed.  And the awesome part is that there was some RELIEF.


That’s a nice word isn’t it?

And there was some pain and strangeness to it.  My mind more than anything was trying to figure out WHAT THE HECK I had gotten myself into next…It was almost like it was saying THANK YOU at one moment and then WHAT THE?! the next and then it was like it started speaking to me and the therapist.  He said, “Your body knows what it wants.  It’s thanking me right now.  It wants help getting the walls down and opening the doors”…

CRAZY.  Like I said.

For years I have said that I want to be SOOOO STRETCHED in ways that no one could understand I was talking about.  Perhaps this may be what I’m liking for right now.  I was told I may feel some emotional fits and strangeness as the tightness and toxicity gets cleaned out and that I may feel some popping and cracking and pain and tingling here and there and perhaps a bit dizzy and strange.  Yes the dizzy and strange comes and goes since the first treatment.  That’s for sure.

Before the treatment he was going over a whole work up report he had made up for me and showed me which parts of my vertebrae were in trouble and damaged and were also out of alignment and then he showed me all the symptoms that show up from these trouble areas and it was BAFFLING TO SEE some of the symptoms I have brought up to EVERY singe medical professional I can come up with and NONE of them have ever been able to really help me.

It was as if my body had found a TRANSLATOR for some of my major perplexing issues…


And it helps that he’s nice, normal and he wants to heal.  I can feel that.  He also must be incredibly strong with the work he was doing on me.  WOW!

So I’ve made a 6 month commitment to see him for intense treatment and he said he could guarantee me I could feel 40-50% better at least than I do now with how I am.  HE ACTUALLY GAVE ME A DEADLINE!


I have to do what he’s asked me to do for exercises and other devices he gives me to help me out too so we’ll be working as a team.


So yeah I’m scared because it’s a whole new road but you know what?  It’s almost like I’m thinking I should be scared because it’s new but I really am not.


That’s a wonderful thing.  It’s the first time I’ve felt positive all week to be honest.  It’s been one of those weeks…

Goodnight all.

May you all find some hope in your next day.  It’s out there.

I learned a new saying that helps me a lot:





I believe this.  I hope you do too.

Categories: Appointments | Tags: , , , , , , , , , , , , , , , , , , , | Leave a comment

I Survived the Hydrogen Breathing Test!

Well.  That’s over.

I did it.  I’m still recovering and settling in but it was OK.

I did the test with one other gal who was pretty pleasant.  Another person was supposed to do it too but she showed up too late and they rescheduled her.  I don’t even think she was ten minutes late.  Phew.  Glad I got there early and stuff.

Anyway, first we had to drink this cup of water that had this weird sugary powdery not so yucky but not so good stuff in it.  Then we had to blow into this bag/balloon thingie and this tube and apparently it was measuring things and stuff from my breath.  CRAZY.  From what I read, it was measuring the amount of hydrogen I was producing just from my breath and that’s supposed to tell them if I have any small intestine bacterial overgrowth because I guess some of the bacteria can produce hydrogen.


Anyway, so I hadn’t eaten since 8:30pm the night before and was really dragging and doing things like almost punching Corey in the eye while saying goodbye to him this morning while he was still waking up in bed. Then I was draggy and words weren’t registering when I got there when others talked to me.  Then I was achy and creaky and all I wanted was water. I kept trying to reach for my invisible water bottle. So used to always having some water. And my body was so confused because it was out of routine and I hadn’t taken any meds yet and then it had to drink this weird stuff.

So then my belly reacted and everyone was like “UH OH” but I think it was just like–“What the heck is this crapola and where’s the real stuff”? because then it seemed to calm down.  Then every 20 minutes this nice lady would come in and have us breathe into the bag and tube and around and around we went. One time I lost track of my concentration and was worn out from doing this breathing stuff and first sucked in and then had no air left to go out but she said it was still readable so OK.

I tell ya though, drinking water and eating afterwards was GLORIOUS!  I’m so blessed to be able to drink and eat when I’m allowed to and have enough money to do so.  I know some people have to go days without drinking or eating and never know when they’ll be able to do so again so I was trying not to get too whiny about it, BUT IT WAS STILL HARD.  I’ll admit it.


So I have been spending the rest of the day trying to get myself back.  I’m pretty wiped and yet I’m so glad that my body is strong enough to be able to handle such a strange experience to go through that is completely out of my comfort zone.  I know there is a reason I haven’t taken the test until now.  I would’ve been much more of a mess before if I had done it in the past.

Monday I see my doctor and hopefully I’ll find out the results.  FINALLY.  Been thinking about taking this dang test or something like it for years.  I didn’t know what I’d be in for but was told and cautioned by my Gastroenterologist at the time to be cautious and to wait if we were to do it at all because it may take a really big toll on my body.

Well it hasn’t been awful.  It’s just been uncomfortable and thankfully I didn’t have anything else planned that I HAD to do so I was able to REST MORE today and into the evening.

So that’s that.

Another test I can check off my list.  Oh the strange things I do to find out what’s going on in my body…


Categories: Appointments | Tags: , , | Leave a comment


Just posted this on Facebook as my status and thought it was a GREAT BLOG RANT FOR TODAY!  Look at what I get to do tomorrow…GOOD TIMES!
“So I have to do a strange test first thing tomorrow morning for at least 3 hours called the Hydrogen Breathing Test. They’re going to be giving me things to ingest (great–something tells me it won’t be yummy) and have me blow into a balloon-like thingie to see how my digestive system reacts… Oh goody. Something tells me I may not be feeling too good from this. And I’ve also been doing a strange type of prep diet for it that makes me feel both full and hungry at the same time. Glad to be able to eat but so bizarre. Leave it to me to have to do weird tests and do weird things to see if I can find out what’s going on in my body. Soooo, I’ll be bringing books and music and posting a lot on FB I’m sure with my phone even though they don’t have WiFi–which reminds me to bring a charger… So that means I can’t really watch anything because my IPad doesn’t have WiFi but oh well. I’m told I’ll be doing this test with a small group of people. I hope they’re OK to hang out with that long or it could be even more fun! So yeah. That’s what I’ve been preparing for all week. Please if you can, send along some good vibes. I can’t eat or drink ANYTHING after 8:30pm tonight because I need 12 hours of no ingestion and the tests starts at 8:30am. NO WATER?! BUT I LIKE WATER! I’m ALLOWED to brush my teeth and rinse thoroughly in the morning BUT THAT IS IT. Sooooo, I won’t be able to eat or take any meds (but WHAT THEY GIVE ME–ACK!) till at least 12pm tomorrow if I’m lucky…OY!!! NEEDLESS TO SAY, I HAVE NOTHING ELSE PLANNED AFTER THE TEST EXCEPT TRYING TO EAT IF MY BELLY IS NOT TOO MESSED UP FROM WHAT THEY’VE GIVEN ME AND TAKING MY MEDS SO I CAN FEEL MORE LIKE ME AGAIN…OH AND RESTING SHOULD BE GOOD TOO…Will be glad when it’s over that’s for sure.—And this is all happening when my digestive system is starting to settle down again…OF COURSE! TIMING IS EVERYTHING RIGHT!?”
Categories: Appointments | Tags: , , , , , , | Leave a comment



This is the second time in a row that I have gone to the Dentist and been told that my mouth is doing really well!  HOW COOL IS THAT?!

See with LUPUS and lupus medications, I have had a tendency to have dry mouth syndrome (I know there’s a name for it), swollen gums, bleeding gums, sensitive teeth, a sensitive or swollen tongue (TMI I know), cankers and just a whole bunch of IRRITATION!

Well lately I’ve been thinking about my Dentist appointment coming up and have realized that I have not been thinking about my mouth lately.  Now isn’t that a weird sentence for ya!  Funny how that is.  I have been thinking about issues and symptoms in my mouth for years…EVEN BEFORE THE LUPUS DIAGNOSIS IN AUGUST 2010.



That may have been more than you needed to know but I’m happy to share it because right now, any good physical health is a huge VICTORY for me these days!

The ONLY REMINDER I got from my Dentist is to be really careful and pay extra attention to my Wisdom teeth (yes I still have ALL 4 OF THEM!  If only I was more WISE from them…) because that’s where all the problems can really start since they’re so hard to get to.  I get that reminder every time so it wasn’t a big concern.



I was so up from that good news and appointment that I found myself eating lunch at the Veggie Grill using a gift card given to me by an awesome friend, and having my favorite B-Wing Salad (if you haven’t tried you have got to!), then driving to Santa Monica beach so I could pick up some purple hair dye and stock up at a new store (of which I LOVE and had no idea about–thank you SIRI on my IPhone–you may be creepy but you helped a lot today), ended up purchasing some special muscle soak bath salts that are all natural and stopped by a Jamba Juice to try to get some extra nutritional needs taken care of since I’m going on a special diet prep for a special Hydrogen Breathing Test on Thursday.  Needless to say Wednesday will be weird, hence the dying the hair purple to pep me up for Thursday’s “UN-FUNNESS” of no eating and no meds till after the test that may take over 3 hours (YIPPY SKIPPY), and nurturing the body because lupus and MS can get very irritated from being so OUT OF ROUTINE and depleted of all things to take care of it.

I also found myself driving along the coast and parking very easily at a spot along the street with my Handicapped Placard (best part about having one is parking and not having to pay for meters or worry about time constraints unless they’re Street Sweeping–learned that the hard way years ago) and walking down the stairway (COULD NOT HAVE PLANNED THAT BETTER), only to find myself walking out onto a WALKWAY halfway onto the beach and then straight towards the ocean.  It was a cloudy cool day so hardly anyone was there…THAT IS EXCEPT 2 DIFFERENT PHOTO SHOOTS (one of them may have been a music video–so WISH I knew who those 2 different women in different locations were with their whole entourages) and lots of birds taking advantage of the absence of weird human creatures.

Once that was done I dragged my satisfied self (getting tired by then but so happy to be taking care of myself and things just so wonderfully falling into place) to the grocery store to get some regular groceries and other items to help me get through the strange diet menu I need to have tomorrow to Prep for that Thursday test.

SO ALL IN ALL.  A pretty good day even if I do say so myself and I DO!

Was also nice to see that our Cleo Kitty was doing better since this morning because this morning she got sick I think from eating her food too fast and that always worries us with her health issues.  She seems to still be recovering but is much better I think.  Was probably good for me to get away and leave her alone so she could get some REAL rest but BOY was she HAPPY TO SEE ME AND I TO SEE HER.


OK.  Time to unwind…

It’s nice when days fall into place.  They rarely do that with such ease and I’m going to take the time to enjoy that…



That’s even better.

Hope you all have had a good day too!  We all deserve more of those!  Write to you soon!

Categories: Appointments | Tags: , , , , , , , , , , , , , , , , , , , , , , | Leave a comment


I have a one track mind today. It’s called ACUPUNCTURE AT 3PM TODAY!!!!!

My body has had more than enough of this sun and heat and so have I! Yes, it’s summer and Blah Blah Blah but for goodness sakes, I need some relief!

Sure, air conditioning is fabulous and closed blinds help but there’s only so much a cool dark cave can do. When it’s hot it’s HOT. My body knows it. I can’t fool it. I tend to hold in the heat and stock up on it just in case I end up freezing one day (hmm, it’s been YEARS since that’s happened) and I am rarely ever cold. I also am a sponge to humidity and suck in the dampness and then I’m really in trouble. Heat and dampness don’t mix well in a multiple scleroris/lupus world. Nope. No they don’t.

Heck, MS and lupus don’t mix together either but that’s a whole other topic.

I’m grateful to have found acupuncture years ago and been willing to try it. It’s not a cure but it sure has reduced my body temperature a great deal. I still remember my first appointment and treatment with this wonderful lady. She told me I carried too much heat and dampness and she was going to cool me down and dry me out. I HAD NO IDEA the effect it would really have on me. While I laid on that table in that strange room with all these weird needles in me (DON’T LOOK) with a lovely eye pillow on my eyes and relaxing music playing in the background, I started feeling what felt like a door/window open in my right arm and it was like this rush of cool air started working its way in up my arm, across my shoulders and into my left arm and kept going throughout my body. I was convinced it was someone turning on the AC or was blowing a fan on me. Nope. It was the effect of acupuncture and because I was so seriously boiling hot internally the relief was almost overwhelming! When I told my Acupuncturist about my physical sensations, she was thrilled. It was exactly what she was hoping for and yet she was baffled. She said I must be really sensitive because most people aren’t so aware of how they’re feeling during their treatment and will tell her later instead of right then. (I continue to be that sensitive years later and she says she LOVES to treat me because she gets more of an idea of what works and what doesn’t with me.)

After a few more treatments I was committed to keep on going with these acupuncture treatments. In fact, the relief of the intensity of symptoms (my body was throbbing with symptoms at that point) had me on a big HIGH a few weeks later because it was like the endorphins knew how to function again and the ABSOLUTE PLEASANTNESS I felt was unbelievable. I was bouncy and unbelievably light and happy. Everything was GREAT! Now realistically that didn’t last but it was a nice feeling to have at the time. I had NO IDEA I COULD FEEL BETTER…

I soon found acupressure treatments at the same office and swear by those too. It is acupressure that has loosened up my body the most and helped me to function with daily activities and in the world.


Categories: Appointments | Tags: , , , , , , , , | 2 Comments

1 Whole Year!

I had a gynecologist appointment yesterday and I’ll spare you all the details BUT I’ll share the really good DETAIL with you. Get this! If all continues to go well she doesn’t want to see me for:


“That seems like a long time for you doesn’t it?”, she quipped.


I don’t remember the last time a doctor said they didn’t need to see me for a year. It has to have been before my lupus diagnosis which was almost exactly 2 years ago. That is crazy. If I’m lucky now and things are improving I get told to see one of my gazillion doctors every 2 months, 3 months, and I was excited to be told 6 months the other day.

I mean who knows? I might get stuck with something that brings me back sooner BUT JUST THE IDEA OF ALL THAT TIME IS SO EXCITING!

And what’s so cool is that this doctor I saw yesterday seems to connect with compassion and have the understanding of what kind of good news that is.

IT’S PRETTY DANG AWESOME! I’ll take it for now and not let my head get ahead of myself with the “What ifs” crapola it always wants to come up with.


Thought I’d share this with you since I wanted to talk about something good. Otherwise, yes I know it’s summer blah blah blah, BUT this heat is KICKING MY BUTTINSKY and everything is extra work, extra effort, my symptoms are flaring with the heat and sun and it’s not fun. It’s very easy for my head to get into fear and doom and gloom and think that the heat will never stop and I’m getting worse and THAT I JUST CAN’T DO IT…BUT somehow I do. I’m stubborn like that. Sometimes it’s an asset to be as stubborn as I am.

Also sending love, prayers and hugs to my sister and her husband who lost their baby kitty very unexpectedly today so as you can guess any wind I had in my sails has been blown out of me and I’ll need to take it easy today. Hopefully things can pick back up tomorrow but I gotta process this. He was such a sweet little boy kitty with such a face and I am very sad.

Love to all! Gotta get back to resting…

Categories: Appointments | Tags: , | Leave a comment

Ever Had a Left-Handed Hygienist Clean Your Teeth?

I have.  Today.

She’s bubbly, friendly, funny, gentle and left-handed.  It was so cool.  It doesn’t take much to excite me these days I guess.  She’s the first left-handed hygienist I’ve had.  I thought I had noticed her position in her chair as she cleaned my teeth the last time I was at the Dentist and today I asked her about it.  Not everything she did was the complete opposite of doing it all right-handed.  She said that in school her teachers ONLY knew the right-handed method of cleaning teeth and when she and her 3 other left-handed classmates (she tells me that’s very unusual for one class to have more than one left-handed person in it) got stuck trying to figure out how to do the next part of the exam they were learning with their left hand, the instructors would be stumped and wouldn’t know what to tell them.  She said it was really good in the long run because she had to problem solve each roadblock they hit in the mouth on their own (that seems very strange to articulate in writing) and not everything was completely opposite.  She also was forced to learn the right-handed method too in order to get by.  Pretty interesting actually.  So she then answered the next question I was going to ask her which was why it seemed like she had different methods for cleaning than what I was used to.

And why am I even talking about this?  Well because I had a good dental appointment today for the first time in years!  There are no real issues to report.  I PASSED WITH FLYING COLORS!  Amazing!  Not only do my wisdom teeth (crazy that I still have them) look good with no areas to watch for cavities, but my gums aren’t as irritated or bleeding (can happen with not only lupus and MS, but also with the medications I take for both–isn’t that just great???), and all the other teeth are good too.  Sure I have a bit of a cracked tooth (have no idea how that happened–guess this it it–I’m getting old…) but the Dentist had no worries about that AT ALL.  Oh and a lot of times my jaw and face muscles in general get really tired of being open for a long period of time (MS and lupus related during the cleaning and I didn’t have much of a problem with that either.

I think it’s the first doctor appointment I’ve had in a long time that was so positive–and get this–NORMAL.  It’s a really nice feeling.  I’ve been kind of a high all day about it because I feel like I rarely ever get a break from any doctor these days.  There’s always this underlying black/grey cloud hanging over my head about something.  I just have to stay very diligent about all the brushing, flossing, etc. that I do to keep up and all should be well.

Considering it was quite hot today it’s been a pretty good day overall.  It’s nice to be able to say that.

Thank you all for being here on the road to recovery with me.  It feels really good to share with you.

Hope you’re having a good week!




Categories: Appointments | Tags: , , , , , , , , , , , | Leave a comment

You’ve Come A LONG Way


First of all before I forget, I want to welcome all of my new followers!  Thank you thank you thank you for joining me on this crazy journey of life with chronic illness.  It means so much!

Hope you all are starting your week off alright.  I got to start my Monday first thing with a “Fasting” appointment with my Primary Care Physician’s Physician Assistant this morning.  I tell ya.  The fun I have.

These “fasting” appointments always get me extra tense because well, who wants to go to a doctor appointment and not eat when they’re body is yelling for food?  Aren’t we told to eat 3 healthy meals a day and to be sure to eat breakfast?  Well, we can’t eat breakfast when we go to a morning “fasting” appointment now can we?  These doctors want accurate blood test readings for cholesterol and blood sugars levels and such.  Yeah, well, tell that to my body who decided to wake up this morning and be INCREDIBLY hungry!  Isn’t that always the way?

Sure I’m pleased that my body was hungry because 2 years ago at this time I was trying to teach my body how to eat and ACCEPT food again after being so severely ill I had to start on a basic diet of chicken broth and then build to applesauce and go from there.  BUT when I “fast” I can’t take my morning medications with an empty stomach so that waits too and my whole body gets screwed up.  And it was 2 years ago in June when my body started going into a huge shock of what we all believe (NOW) was part of a major lupus flare (had no idea at the time) that all started with a basic “fasting” appointment for an appointment with who was my NEW doctor at the time so he could get BASE levels of bloodwork for me.  Well, that “fasting” and then running to work and then running through the rest of the day was too much for my body to take and I became severely ill with vomiting, etc.  So of course I still take that baggage of memories with me to my appointments now.  I’m working on letting that go but it is VERY SLOW.

So anyway, back to the appointment this morning.  Sorry for the tangent.  I was able to see the original Physician Assistant who is now back in the office after being on her own Medical Leave of sorts that included Maternity Leave for what seemed like FOREVER, and it was really great to see her.  How cool is that?  It was felt really good to see a medical professional again.  I really think she is THE ONLY MEDICAL PROFESSIONAL I currently see who DOES NOT make me NERVOUS.  I put those words in caps because that is how nervous I still get around almost all medical peeps.

This woman is probably younger than me (hmm, seems to be happening A LOT lately and I’m not THAT OLD) and has been so caring, supportive, compassionate, has always listened to me, been calming, loving, has always paid attention to detail, is really smart and knowledgeable, has a great memory, and has ALWAYS made it a point to ask me so thoughtfully how I’m doing when she walks in the room and I know she means it.  What I remember most along this very slow and at times VERY DARK 2 year journey with her is how she ends each appointment with me telling me how far I’ve come and really making sure I understand that and give myself credit.  I can remember one appointment when she was telling me how happy she was that I was “feeling better” and even though I may have a long way to go to hopefully feel “good” one day, that I have come so very far and she was starting to cry.  I was pretty much in disbelief.  I almost wondered why she was crying and then I realized she was crying about me!  She REALLY connects.

So the appointment today went really well.  And wouldn’t you know my blood pressure was “normal”.  CRAZY.  It has not been normal lately ESPECIALLY when I have been to see my Rheumatologist for lupus and my Neurologist for MS.  It has been quite high.  I have known for quite a long time that I have “white coat syndrome” but this just proves it to me.  I saw the one medical professional I feel the most comfortable with and my blood pressure was normal.  I was nervous but not anxious around her.  There is a direct connection.  So now if she could be with me wherever I go that would be great.  Do you think she’d go for that?  To be my constant moral support everywhere?

To be honest, I’ve considered changing to a different Primary Care Physician than the one I’m seeing now (this lovely PA I speak of currently works in his office) because I don’t know that he’s a good fit for me anymore.  He’s not a bad doctor at all.  In fact, he has helped me immensely.  There have just been some issues that I have with his medical care that I don’t necessarily like and it may be time for a change.  However, after seeing this PA today I’m not so sure.  I see her every other appointment and I have to see him all the other times.  Is it worth it to stay with this office (really GREAT office staff!) and deal with the Doctor I don’t exactly like in order to see her half the time?  Not really sure so I guess that means it’s not the right time to make that decision yet.

Only time with tell what decision I make.  Luckily I don’t have to know that answer right now.

So just for today, I am satisfied with the appointment with a medical professional who really “gets it” who sent me on my way at the end of the appointment today with, “You’ve come a LONG way, Nahleen.  I’m very proud of you for all the work you’ve done.  You deserve to feel better.  I hope you give yourself credit for that.”–and AGAIN, I know she means it.  It’s not just part of her script.

Oh and by the way, it’s currently 6pm (Monday) and I’m doing okay.  Nothing horrible has happened because I “fasted” this morning.  Sure it messed up my body’s schedule, but thankfully my body can take it today.


…Guess I HAVE come a long way.



Categories: Appointments | Tags: , , , , , , , , , , , | Leave a comment


Guess what??

I saw my cute Neurologist today annnnddddd:

My multiple sclerosis is STABLE!

Great news!!! Turns out the lesions I have are the lesions I’ve had FOR-LIKE-EVER and they’re not active! No new ones to speak of. Just the ones that seem to have taken permanent residence on my brain–you know–for kicks and memories I guess. I won’t lie. I sure would like those old lesions to get the heck on out of my brain, BUT I’ll take what I can get.

As my doctor says, “Guess what? You have a beautiful brain!”. Hmm. Thanks…I think?

He’s also pretty darn thrilled with my physical improvement since I first met him almost 2 years ago and he gives me and the oral MS medication, Gilenya, A LOT of credit for that. As for Gilenya, there was a time earlier this year that he was worried about the reports of deaths while on it. Turns out, none of those deaths look like they are connected to Gilenya AT ALL (so sorry these people died BUT so relieved to hear it wasn’t Gilenya) and if there’s even a hint of a connection, they have nothing to do with my clinical make up and he is VERY HAPPY to keep me on it! Well OK then!!!

This Neurologist continues to be my favorite Neurologist so far which is saying A LOT since I have had crappy luck with these specialists in the past and I think he’s my 9th Neurologist in 10 years. It’s not just because he’s cute either. REALLY. No really. He’s knowledgeable, patient, compassionate, takes the time to talk to me, answers ANY and ALL of my questions, asks me about ALL of my health issues because he believes his MS patients can’t be truly healthy without taking care of the WHOLE body, his Assistant rocks it in the Assistant Department (and could give classes about how to handle Patient and Doctor demands), he responds very quickly to phone calls, he’s personable and quite humorous, pays attention to detail, he was very understanding when I had to cancel an appointment due to being sick, he’s proactive, and apparently he’s one of the top MS Specialist Experts in the country. You’d never know that from him. He doesn’t talk about that at all. I hear it from his colleagues (all the other doctors I see who work with him). Oh and did I mention he used to be a JAZZ MUSICIAN in a past life??? How crazy is that? How does that happen?–First a Jazz Musician, then a Doctor, then a Neurologist, then an MS Specialist??? When I asked him about the connection, he said, “I’m a Nerd.”

My clinical neurological tests during the exam went okay. I think I had some issues. He knows I’ve done those tests a bazillion times so he tries to trick me and ask me what I ate a week ago (not last night or this morning but a week ago). He tries to pull questions out of thin air and ask me what I don’t expect. When I answered the spelling of “orange” correctly (kinda hard to spell with your eyes closed–you should try it), he said, “OK Smartypants. Let’s see what else you can do”–and after he had me do a few more tests he told me to spell “orange” backwards…and then giggled about it. Yeah ha ha. Thank goodness I’ve always been a good speller and visualizer. Now you try spelling orange backwards with your eyes closed. HARD RIGHT????

So that’s that. My MS is probably just acting up because it wants to and because it’s been hotter. AND it takes nothing for me to get hotter when it’s extra sunny. And wouldn’t you know, he says I have a case of the “Double Whammy”…hmm…sensing a theme here. Isn’t that what my Rheumatologist said about lupus and MS last week???

So to end the appointment, he told me to “stop being so hard on myself.” He pointed out that I have multiple sclerosis AND lupus. Enough said I guess. I don’t know why that can’t stick with me more and I can’t accept that as ENOUGH.

Guess I just want to live a “normal” life WITHOUT multiple sclerosis and lupus.

BUT since that doesn’t seem to be in my near future (an obliteration of any disease at this point), I’ll continue to practice this “RESTING” thing that is all the Rage with doctors these days and TRY to be gentler with myself.


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

Blog at

%d bloggers like this: