Posts Tagged With: doctor

STUPID INFECTIONS!

Posted on October 23, 2012 by Nahleen

TODAY I’M FRUSTRATED!

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

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

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

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

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

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

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

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

SOOOOOOO FRUSTRATING….

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

STUPID INFECTIONS!

*******

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

YES THAT ROCKS!!!!

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

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

 

 

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CHRONIC DISRUPTION

Posted on October 9, 2012 by Nahleen

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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Reflection: It Started With An Emergency Room Sign

Posted on September 4, 2012 by Nahleen

The sign with an arrow supposedly pointing where the Emergency Room was, still sat on the construction wall at the hospital. I balked at how there was still a missing building after all these years and just piles and piles of dirt being moved around.

WAIT. How long had it been, I thought? How long had I seen bulldozers at this site? I could feel my mind’s wheels turning. It had to have been before I became severely ill over 2 years ago and could barely hold myself up on the seat as Corey “rush drove” the car down Santa Monica Blvd. I remembered that same Emergency Room sign that faked us out. It wasn’t a sign pointing into the entrance, it was a sign telling us what street to turn on next–vaguely explaining the location of the actual ER. Talk about a let down. I have never wanted to find an ER so badly in my life. I felt as if my head and body were hardly together and I was so incredibly out of it and nauseous. I really didn’t know if I could make it any longer in a moving vehicle without vomiting. Little did I know, 2 months later I’d be diagnosed with lupus. CRAZY.–And after that I’d know the location of way too many doctor’s offices, where to get bloodwork, the best places to eat, the best places to walk, where to park, which building had which doctor, etc.

*****************************************************************************************************************

THAT was 2 years ago.

Today, as I walked with a bit of a spring in my step down the street even after seeing that Emergency Room sign (I used to cringe and get a twinge inside), I thought about what my Pulmonologist had just said to me a few minutes before that at my appointment. After chatting for a bit, he started reminiscing about how I was 2 years ago. How I had such a hoarse voice, my sinuses were out of control with a major chronic sinus infection, I still had a deep cough that indicated I had a pretty chronic upper respiratory infection that just wouldn’t go away, I had horrible post nasal drip, my throat almost almost always hurt, I felt awful and was very low on fatigue and I could hardly hold my head up to look at him. Now after 2 years of a very strict, proactive and aggressive medical treatment plan (medications including antibiotics over and over again for months, ointments, sprays, taking all asthmatic medication away because it was irritating more than helping, sinus rinses every day, numerous breathing tests, rest, lupus treatment, and all of my other medical care enhancements, him always taking my calls within the SAME DAY, etc.), my voice is much better. I told him today that I thought my voice was still hoarse and he said it was nice to be able to hear me. He used to have no idea how I was able to even talk let alone breathe at all. And to think, I only saw him at first so I could make my Neurologist happy and he’d say my breathing was OK and I would be cleared to start taking the new oral multiple sclerosis medication, Gilenya.

The BEST part of the appointment came at the end. I am still BLOWN AWAY. Call me STUNNED. He said, “Call me if you need me. No need to schedule an appointment. I think we know by now that we communicate when needed right?” and I stumbled all over myself, even stepping back to regain my composure, and said, “Um, yeah. Yeah we do. REALLY? I don’t have to schedule an appointment at all?”. And he shook his head a bit and said, “Nope.”.

My mouth dropped and I felt like at least a layer of weight had been lifted from my shoulders. AMAZING! I wanted to run down the bleak and clinical hallway outside his office and yell to everyone (not that anyone was there) that I didn’t have to schedule an appointment. I had graduated–at least from one doctor anyway! In the past, he had always wanted to see me in a few weeks, a month, then 3 months, then maybe sooner depending on what was going on, then in 6 months (THAT WAS HUGE) and now this! An OPEN ENDED commitment! NO WAY!

I’m still baffled.

****************************************************************************************************************

So there I was taking my walk down the street after passing that Emergency Room sign and thinking about just how long they’d been doing construction on this building and WONDERING if they’d EVER get it finished and it all started coming back to me. Waves of awareness were flowing in. Flashes of the entire 2 years of good and bad and the journey I’ve taken. This isn’t necessarily unusual for me to reflect but the context was completely different.

I AM GETTING BETTER.

It’s slow. Holy moly is it slow–in my mind. BUT part of my journey was finding out that I was a major physical and mental mess and it was going to take a lot of patience (and still does) and one foot in front of the other to get to get healthy. I still have quite a ways to go but I NEED to have hope. Today gave me some more of that.

HOPE.

With the sun (lupus) and the summer (MS) messing with my mind, it is hard to have perspective. Everything acts up in my body and I feel trapped more than during other seasons. I can’t really ever stop being hot. I can’t even really get away from the UV rays (fluorescent lights bother me too) so I’m always just trying to TRUDGE my way through it all and it is HARD.

–By the way, at this point I could point out to the hospital authorities that their Emergency Room sign isn’t that accurate about the actual location and they need to fix it. Do you think they’d want to hear from me about that after all these years? Yeah, I don’t think so either.

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Moments of Peace Part 15

Posted on August 17, 2012 by Nahleen

Well it has been quite an intense week.  I wasn’t sure I’d be able to write this post today because I’m currently sick with some sort of infection that includes laryngitis and since I’ve started antibiotics last night I’ve been feeling better.  To be honest, that is AMAZING!  I’m not exaggerating.  I can’t remember any time I’ve been sick that I’ve taken antibiotics and felt better the morning after starting them the night before.  It was a good thing to catch this really early.  My body can’t afford to get HORRIBLY SICK.  Fortunately, I have doctors who agree and push that on me.  So here’s hoping I can get back on my feet again soon.

On another note before I get on with my Moments of Peace, I’ve been getting inquiries from people reading my Blog asking if they can recommend my Blog to others.  YES PLEASE!  That would be great.  One of my goals is to connect with others.  The more the better.  We can all help each other.

And now for my Moments of Peace:

08/10/12 My view in West LA in the afternoon. It was so dang hot that day. I think the intensity of the sunlight really shows it. Something about how green these tree leaves are struck me. It’s not like we get rain here but it sure is more humid than it used to be.

08/10/12 My view in Culver City, CA in the afternoon. And the heat continued. LOVE the bold color!!! Caught my eye right away.

08/10/12 A lovely view of my Cleo Kitty and I. She loves to cuddle with me on the couch in this position. Love her so much!

08/10/12 My view from my balcony as day turns to night. The evening skies have really been catching my eye this week no matter where I am. Summer skies are gorgeous!

08/10/12 My view from my balcony as day turns to night. I’m always in awe of how the sun reflects on the clouds–notice the edges here.

08/11/12 My view from the sun deck as day turns to night. Summer sun setting with little white wispy clouds.

08/12/12 My view from the sun deck as day turns to night. All kinds of clouds happening at once up there.

08/13/12 My view from my doctor’s office in Santa Monica, CA today. It was another really hot day with mega intense sun. Everything is so bright. Loving the view on the horizon.

08/13/12 My view on my walk in Santa Monica, CA. Hello bright sun!

08/13/12 My view on my walk in Santa Monica, CA. These were a pretty color and so calming. Anyone know what they are?

08/14/12 My view from the sun deck as day turns to night. You can’t really see it here but there were levels of color that were fascinating me. The color right near the horizon was purple.

08/15/12 My view from my balcony as morning arrives. I was breath taken by all the sights in the sky. The sunrises this week have been beautiful.

08/15/12 My view from the sun deck in the afternoon. There was an artist in the sky that day. I could see so many images in those clouds. What can you see? And look at that blue!!!

08/15/12 My view from the sun deck in the afternoon. There’s even more artistry in another part of the same sky. Loved how these clouds fell into place here.

08/15/12 My view from my balcony as day turns to night. The show just kept going from my balcony. I had to catch these moments.

08/15/12 My view from my balcony as day turns to night. ‘Twas quite a remarkable sky all day. And thus the pinks started showing up. I couldn’t stop gawking at it.

08/15/12 My view from my balcony as day turns to night. The pink flames started.

08/15/12 My view from my balcony as day turns to night. These pictures don’t do this sunset justice but I think you get the idea.

08/16/12 My view from my balcony as morning arrives. Billowy clouds…more pretty.

08/16/12 My view in West LA as day turns to night. So white and so blue. I was walking next door to pick up my antibiotics for my sickies and saw this. Helped me to relax a bit. (And yes, I’m very lucky to have my pharmacy right next door.)

08/16/12 Thought I might’ve heard some grand declaration of music in this one with the way the sun’s rays are declaring themselves through the clouds! Loved it!

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Sicky Icky

Posted on August 16, 2012 by Nahleen

Yep. I guess I don’t feel yucky enough and now I’m sick.

Not terrible sick. Been dealing with laryngitis since last Sunday and every time I think it’s cleared up it comes back. My Pulmonologist (yes I have one of those too) had told me awhile back to do a gargle with salt water and honey and it really helps a lot. BUT it wasn’t the answer to the issue. It just sorta soothed things.

So today I woke up and I felt OK. And then I started to feel really heavy and it felt like my body was crashing. It’s been a pretty intense week. I thought it was probably my body catching up with me. So I went back to bed to get some more sleep. When I woke up later I felt worse. You know, you go back to bed to try to get some more sleep to try to feel better right? Ha! This was one of those sucky times of waking up feeling worse.

This time I felt an overall feeling of yuck–I’ve since learned it’s malaise but what kind of word is that? It’s yuck. It’s bleh. Sick. My laryngitis had gotten lots worse and I felt heavy and gross. Then a bit of a cough started. I’ve learned a long time ago to address my cough immediately if I even get a slight hint of one starting. I can’t play the game and wait to see what happens. I KNOW WHAT HAPPENS…

And NOW my doctors all agree that I need to not only address it on my own (go figure) BUT I need to call them right away so they can help me take care of things. Amazing really that I have doctors that pay attention to this and are proactive. They DON’T want me getting sick–so sick that I can’t function even more. I have a tendency to go from slightly sick to HORRIBLE.

Soooo, even though I kept thinking in my head I could tough it out and do it on my own (been working out really great since Sunday as the no voice nonsense started), I dialed my doctor and found myself talking to someone on the other end right away.

And after waiting for hours for a response I did get a call back and ANTIBIOTICS it is. Good times. These have messed up my digestive system in the past so we’ll see what happens. My doctor told the nurse to tell me (don’t remember the exact words of course), “This is the deal. I understand she has stomach issues and she has a concern but we need to take care of this infection now. She can’t afford to get worse with her immune system the way it is. Tell her to take the Z-Pack and then call us and tell us how she’s doing. Tell her to promise she will. We know she has a tendency toward infections and it’s been awhile and we don’t need to be on a cycle of never ending infection if we can help it. But she has to PROMISE she’ll call me.” And she made me promise and I did like a good girl.

I really don’t need to be more sick. I addressed this early I think so hopefully it nips it in the bud. I decided I didn’t need to be coughing up a lung this time and to be completely miserable. But I’m sicky icky. I’m so tired of not feeling good. I’m so tired of all of this.

Yet somehow living in the solution helps a lot.

So I should probably go start the meds. Here I go. Wish me luck!!!

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1 Whole Year!

Posted on August 14, 2012 by Nahleen

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:

1 WHOLE YEAR!!!!

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

HOLY CRAP YES!

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.

ALSO:

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…

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You’ve Come A LONG Way

Posted on July 30, 2012 by Nahleen

Helloooooo!!!!

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.

 

 

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Smartypants

Posted on July 25, 2012 by Nahleen

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.

I’LL TRY.

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Victory!: 3 Weeks Without Doctor Appointments!

Posted on June 26, 2012 by Nahleen

Yay! I’ve made it 3 whole weeks without a doctor appointment of any sort. I have 2 more weeks to go of this time off I scheduled for myself. I hope I can make it!

It has definitely been a learning experience about how to live with myself and with life without a world built just around doctor appointments. I am happy to say that it is quite peaceful and quiet. Almost too quiet–but this is not a complaint. I need this quiet! I need this me time. I need to have time to recover, recuperate, rejuvenate and readjust to the world around me.

Thank goodness for it! Thank goodness my health is “good enough” for me to be able to take this break. I wouldn’t have been able to say that a year ago.

My more than full-time doctor appointment life starts back up in the 2nd week of July…BUT I won’t think about that right now. I gotta live in the NOW.

THE NOW: getting ready to go to the Los Angeles County Museum of Art (LACMA) today!

So no time to waste!

Yay! Time to get “art-ed”!!!!

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Victory: 2 Weeks Without Doctor Appointments!

Posted on June 19, 2012 by Nahleen

FREEDOM!

That’s kinda what it feels like.  The only other time in the past 2 years that I have gone 2 weeks in a row without doctor appointments, I was on a trip/vacation back east to visit family and friends and I was still DOING something.  This is 2 WHOLE WEEKS WITHOUT A SINGLE DOCTOR APPOINTMENT OF ANY KIND!

Not kidding.  I think there have been a total of 4 weeks during this 2 year period when I didn’t have an appointment and these weeks were not in a row.  They were scheduled free single weeks here and there.  I had to make it a point not to have an appointment and to schedule it that way.

CRAZY!

Yeah that’s what the 2 years have been since right before my lupus diagnosis.  I’m grateful to have such wonderfully proactive doctors (including a Primary, numerous specialists and those in eastern medicine) because they have REALLY REALLY helped me get better.  They have been on me and I have been on them.  We have worked as a team.  We have done the work.  And there’s still more work to do.  The best part–it is working.

BUT RIGHT NOW–

I’m free!  I scheduled it that way of course.  And to be honest, I really don’t know what to do with myself.  I feel like there’s something I HAVE TO BE DOING.  I don’t know how to just BE.  It was my idea (ha ha ha–me and my fantasies) that I would still be on “IT” all and get a bunch of stuff taken care of.  There’s been a lot of medical business that has been left hanging.  There’s been a lot that’s had to be put aside so I could focus on these doctor appointments.  There are things in my personal life to take care of and do.  There’s a bunch of people I want to be in contact with–you know, friends and people I actually LIKE talking to.

AND YET…of course that’s not really happening according to MY PLAN.

It’s like my mind crashed when I finally realized I was a bit more free.  It couldn’t “DO” anything else.  It couldn’t handle making a call to order a new prescription for a medication and I dragged myself the entire way (this is usually one of the easier procedures for me).  IT WANTED NOTHING TO DO WITH ANYTHING EVEN REMOTELY RELATED TO DOCTORS.

SOOOO…things are a bit different than I’ve anticipated.  Go figure.

I’m recovering from my 2 years of very active recovery mode.  I’m sleeping more.  That’s a MIRACLE.  Trying to give myself credit for that.  I’m resting more and even RELAXING at times.  I’m learning how to take care of me.  I’m learning how to be with just me.  I’m learning to ACCEPT me (why is that so hard?).  I’m learning how to not have anything that ABSOLUTELY NEEDS TO BE DONE.  I’m committing to things like a daily guided imagery for sleep, eating salads every day, walking every day, resting more, adding more creative activities (this Blog for one), being gentle with me, etc.  That’s A LOT of work and it takes up a lot of time.

I’m back to the old doctor grind in July but for now, IN JUNE, I will do my best to stay in the moment and be present to my world free of doctors.  It’s really very lovely and peaceful.  The word NURTURING comes to mind.

AND QUIET.

I could get used to this…

 

 

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