Posts Tagged With: illnesses

Doctors: Please Take ME Into Consideration

Full Name: Nahleen Virginia (Knight) Blake. Knight is my Maiden Name. Where did Nahleen come from? Well funny you should ask. I’m sure I’ll have to repeat to you over and over how to say it and how to spell it but let’s get it right the first time. What’s the significance of Virginia? It’s my Grandmother’s Name.

Birth Date: 5/28/77. Thanks! Yes I just turned 36. Uh huh. I’m aware of what 36 means. Wait, what does it mean? Do I dare ask?

Male/Female: I’ll let you guess.

Phone Number: Oh great now you’re gonna bug me all the time.

Any Other Good Numbers to Call?: Nope. And even if there were some I wouldn’t give them to you because you’d chase after me and I’d get no peace. And no you are NOT getting my work number. I made the mistake of telling you that number before and you kept calling me there. Um hi. I’m busy there.

Address: Great. You might stalk me. You’ll at least be sending me bills here. Why else would you want it? Why do I want to give this to you?

Is This a Good Billing Address?: Knew it. It’s all about the $.

Emergency Contact Phone Number: ACK! What’s gonna happen here? There’s gonna be an Emergency here? What if I have no one? And if I give you someone, will you call them every time you can’t reach me? What if that person is across the country? How will they know where I am? Great, now they’ll be worried.

Weight: Does that really matter? Is this any indication of anything? There is no black and white here.

Height: 5’Short–according to my Chiropractor I should be 5’5″ someday as long as I keep going to get adjustments/treatments from him.

Usual Blood Pressure Reading: As if I’m gonna tell you if it’s high. Uh huh. But you’ll take it here in the midst of White Coat Land and freak me out EVERY TIME and take that as a regular reading. Oh you want me to check it at home to get a more accurate reading? How will that be accurate again? I’ll know when I’m gonna be doing it and it will go up.

Usual Body Temperature: 97.5 but you won’t believe me so when you check my temperature and see that it’s 98.6 you’ll say that’s normal and I’ll say it’s high for me and you’ll pass it off.

Hair Color: Well now that’s a good question. Some kind of purple since March 2012.

Hair Type: Pretty dang curly. It’s really short right now.

Eye Color: Blue and to me my eyes are tiny. I also wear glasses so it’s hard to tell they’re as blue as they are.

Birthplace: Homestead, FL (Does that really matter?)

Where I’m From: Kingston, NH

Where I Live Now: Los Angeles, CA

Grow Up With Both Parents?: Yes. I’m blessed to have done so. However, growing up with Single Parents wouldn’t make me less than.

How Old Are They?: None of your business.

Siblings?: Yes. An older sister.

How Old is Your Sibling?: Isn’t that Private? I already said she was older.

Employed?: No. What’s your point? Thanks for reminding me.

Insurance?: Yes. What if I said no?

Are you the Insured? The Primary Card Holder?: HUH?

Primary Insurance?: Ummm…

Secondary Insurance?: WHAT THE?! Leave me alone!

Insurance Information (and everything you didn’t even know you needed to know…): OK. Let me just dig through my purse and wallet and FIND that all for you. Didn’t I just give you my Insurance card? Isn’t it all on there?

Driver License Number: Geez. Nosy! And didn’t I just give you my ID? Isn’t that what this is?

Social Security Number: None of your business. Stop snooping around. I think I need to report you.

Disability?: Meaning what? Yes I have Disability Coverage but don’t get me started about all of that. Am I Disabled? YES! OK?! I think that’s in the mind of the beholder.

Married? Single? Divorced? Domestic Partner?: What does that matter?

If Yes to Married, what’s your Spouse’s Name?: What if I’m not married? I feel like crap now.

If Yes to Married, Spouse’s Social Security Number: Well now that everyone else has been left out…now why on EARTH would you EVER need their Social Security Number?

Allergic to Anything?: What exactly do you mean by allergic? I hope not! Great now you have me paranoid.

Eyesight: Yes I have it but I’m pretty blind. Do you mean do I wear glasses? Yes.

Illnesses?: Must you remind me? (Sigh.)–Multiple Sclerosis, Lupus, High Blood Pressure, Asthmatic Tendencies, Hay Fever, IBS, Prone to Infection, Probably Depression–and now I’ve crawled under the chair in the corner…

Is This a Work Related Accident?: I knew it was an accident I had all these illnesses! Yes! I’ve wanted to blame my work for something! Perfect!

When Did It Happen?: Ummmm…which dates are you looking for? What are we talking about now?

Medications: Hmmmmm. Do you have a whole book I can fill out? This little box here ain’t gonna cut it. And do I include vitamins in this or not? None of you ever know if you care about these or not.

Other Doctors?: Too many to count. Again, looking for a book to fill out. I might have room to write down one doctor.

Can We Contact Your Doctors?: Meaning what? Yes aaannndddd No. How’s that? And will you really contact them?

Any New Doctors?: Chiropractor (not that you pay attention to that because they are NOT in Western Medicine…OH but he’s a doctor too? OK…). Psychologist/Psychiatrist: Yes she’s both.

Symptoms?: Ok great. Thanks for reminding me. Yep. (Tense up).–Fatigue, pain, stiffness, weakness, tingling, heat fatigue, eye light/dark sensitivity (new–and I’m annoyed), dry eyes, dry mouth, cognitive symptoms, emotional symptoms, overall malaise, hair loss, nausea, bloating (hmmm there’s not enough room on here. In fact, there’s not enough room in any of these boxes on here. What the heck? Do you really have any patients who can fit their life/health histories in such a small space?)

WHAT KIND OF A FORM IS THIS?

*THESE ARE JUST EXAMPLES OF WHAT I’VE BEEN ASKED OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AGAIN!*

Seriously, doctors, nurse practitioners, physician assistants, medical assistants, nurses, office staff, lab technicians, etc.: How often do you really look at these? Are you even looking at these? And do I even want ALL OF YOU to see EVERYTHING I just answered? That is a flat out NO! And why isn’t there an overall database that all medical professionals have access to? Why do I have to KEEP filling out all the same questions? Why is each form different? Why can’t they be uniform? I’m tired. I’m tired of writing all of this down. I’m soooooo over rehashing all of this.

I AM NAHLEEN.

What does that mean? That means I’m a Person. I mean something. I’m not my penmanship (which used to be really good btw until I kept having to write these answers over and over again). I’m not just my name. I am 3D. I have Depth. I giggle a lot. I’m struggling all the time with my diseases. I’m not working and that was one of the hardest decisions to make. I’m afraid to say I’m feeling better because I don’t want you to think that I’m all better and shut off when I tell you that. And who knows who will be looking at these files/records and will assume I’m magically all better and then what? I don’t fit in a box. I don’t come in black and white. I come in many colors. Perhaps that’s why I express the purple that’s within me. Yes, my hair is purple. That doesn’t mean I’m happy. That also doesn’t mean I’m crying out for attention. Purple is a part of who I am. Purple has been a part of my soul since I was at least 10. That’s a long time. Can we get passed my purple hair? Thanks. Yes, I have a husband. We’ve been together 15 years. Married 6. Why does the part where I’m married mean more than the commitment of the relationship of 15 years? Yes, I have a weight problem. I’d think I myself would be the most aware of this at all times since I have to live with me. I have ALL MY LIFE. Sure I don’t get to exercise as much but how much do I need to do necessarily? I’ve been walking every day now for 401 days! I know it’s cool. You better think it’s cool! I stretch every day too. Cardio? I try. Coming here to all of my doctor appointment should count as cardio. I’m serious. Oh and did you ever ask me how I am? How I’m feeling? How I’m really doing with all these illnesses? You want me to come in next week too? Did you ask if I’d feel up to it? Did you take into account my life? You are not the only doctor in my life. You are not the only part of my life. You want me to try a new medication? Oh it only has THAT many side effects? Will you be able to pay for it? I’m currently low on funds. Did I mention to you that I’m going on a trip soon? That I want to do more than go to doctors? That I want to have a fulfilling life not focused constantly on medical crap? That I want to try to live my life not ALWAYS talking about my illnesses? Not being defined by these life disrupters? Did you know I have a Cleo Kitty? That I love to write. That I have a Honda Fit that I love? That I miss my family and loved ones back east like crazy? That I’d love to be a Producer of TV, feature films, short films, videos of any sort and to be that creative and not worry about how much time that would entail and how much that would wear me out? That because I’m always seeing you I get really tired and don’t have a lot of time to be social? That I love to be social? I almost forget this myself because I’m so caught up in stuff with you. Don’t get me wrong. Thank you for helping me or trying to. Thank you for helping me feel better (well at least a lot of you–I won’t talk about the others). Thank you for being proactive and part of my time.

BUT PLEASE TAKE ME INTO CONSIDERATION.

I am a person. I have a life. You take up a lot of me. I don’t see you for fun. I see you to get healthy. Perhaps we need to take a look at the best way to keep me healthy. Is it by seeing you all the time? Filling out these forms? Getting my arm constantly squeezed by the blood pressure cuff only for it to spike when I’m there? Is it by constantly talking about my weight? Is it by constantly stabbing my arm to check my blood work levels over and over again because you haven’t been in communication with my other doctors about my blood count levels that were taken just last week? OR is it by spacing out these appointments a bit more? By letting me expand and grow my life to see what I can do and not do? By taking the time to see that I am a human being who needs to breathe and to LIVE and experience the world as this newer more enhanced version of Nahleen???

I’m not the same Nahleen who was working 3 years ago and pushing to do my best no matter what cost it put on my body and my life because I didn’t know or understand anything different. I am a Nahleen who is feeling out my boundaries. Who is not willing to be horribly sick again if I can help it. Sure my body might have its own plans but I will not push it too far. But see I don’t have much chance to see how far I can push. If am pushing, it’s to see my therapist and chiropractor while I’m seeing my other doctors. And these 2 new medical professionals in my life are helping me to figure out how to be a Nahleen with purple hair who still has a chance to smell the roses and look up at the sky (3 of her favorite things were just mentioned here), wants to figure out where her place now is in the world, wants to be social and not live within a medical professional tunnel of health, wants to try new things, wants to do more than rehash her health stuff over and over and who needs to BREATHE!

So if I tell you I can’t see you next week and there is room to BREATHE without putting my entire health at stake (I understand sometimes there are exceptions), please give me that room. You have your life schedule. I have mine. Please respect that. And if I don’t have time to see you, please COMPROMISE. With all due respect, it’s not all about you. You are not my only doctor. You are not the only thing going on in my life. Let’s talk about this. And PLEASE, don’t give me less care because I didn’t put my life aside to come in and see you and pay you more money. There is a phone. There is email. There is always another way.

THANK YOU.

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Consistency Would Be Nice

Um yeah hi ILLNESSES!

Yeah you multiple sclerosis, lupus, IBS and any other physical issue associated with my body that causes discomfort. I’M TALKING TO YOU!

Why is it that when I CRASH into FEELING CRAPPY mode it takes no time AT ALL usually to get to that place BUT it takes a bazillion years longer to RECOVER, FEEL BETTER and HOPEFULLY MORE LIKE MYSELF?!

Here’s the other part of that:

Why is it that when I’m RECOVERING I may not actually get back to where I was but a different place? It may not be a worse place mind you, but a DIFFERENT PLACE?

CONSISTENCY OF BETTER WOULD BE NICE.

I know I know. I’ve been asking for this for years and it still hasn’t happened BUT I’M STILL GOING TO RANT ABOUT IT FROM TIME TO TIME!

DANG IT!

I’VE SO HAD ENOUGH OF YOU MAKING ME FEEL CRAPPY! NO MORE! YOU’RE ALL DONE! GO AWAY! (Yes I know it was probably more side effects from a poisonous medication yet I still have the same feelings about it–after all I am trying to have a life).

And you’re still here with me and I’m still recovering…WITH YOU.

Back to resting…to feeling sad…to feeling frustrated…to feeling relieved…to be feeling like I’m turning the corner to me again.

The key word being:

AGAIN…

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Nahleen’s THANKITUDES!

THANKITUDES you ask?

Are you thankful and grateful?  Are you having a hard time choosing between one?  Do they come with “att-itudes” sometimes too?

SURE!

Let’s take a look at Nahleen’s Book of Nahleenism’s and oh look at that!  She’s just added a new word to her language: THANKITUDEFUL.  Definition: Feeling thankful, grateful, adding the attitude where necessary (or not–your choice).  Also can be written as THANKITUDES…

Quite often these days I find myself feeling thankful, grateful and full of attitude.  Sometimes I find myself feeling just one of those.  Is there a difference between thankful and grateful?  Hard to know really.  I think it depends on the day, who I am that day (I change a lot during the day don’t you?), what’s happening, how I’m feeling and whatever else affects my feelings.

So in light of the upcoming US Thanksgiving Holiday tomorrow, Thursday November 22, 2012, I wanted to share my festive version.

NAHLEEN’S THANKITUDES  (I spent too long trying to figure out if this was a one time only thing or if this could continue and well who cares right now?–I soon found myself not thankful or grateful and FULL OF ATTITUDE because of my own silliness soooo…)–without further ado:

 

AHEM…Let’s try again….no need to make it bold.  Perhaps I put too much pressure on myself…

 

NAHLEEN’S THANKITUDES:

1. I’m THANKITUDEFUL for ME.  Truly amazing to be feeling this way about myself.  This is a work in progress.  Quite often I wonder why I had to be born with such a messed up immune system and why my body had to be so sensitive…why it had to be full of what I conceive as inconveniences and the like.  I can’t stand that I have multiple sclerosis, lupus, probable IBS, food sensitivities like crazy, environmental sensitivities, sometimes asthma and I’m sure the list goes on and on.  And then there’s my crazy mind that beats me up, goes wacky like The Looney Tunes Tasmanian Devil, is meaner to me than anyone else would be and sometimes abuses me.  Then again, I am so much more compassionate towards myself and realize that self care is a wonderful thing.  It helps me to stop, look, listen, pay attention.  These illnesses help me connect more and more with people, with nature and its amazing beauty, meditate and quiet my head, stay more in the moment, and learn who I really am and how to love me for me.  Honestly, I am finally LEARNING HOW TO LIVE MY LIFE.  It sucks that I had to/and still have to go through all of this to get there but I finally am understanding that it’s THANKITUDEFUL that I am for ME.  I’m all I have.  I don’t get to run away and no one else seems to run away from me so there must be some good qualities somewhere.

2. I’m THANKITUDEFUL for my husband, companion, best friend, partner in crime, silly, giggle-making, talented, supportive, compassionate and BIG TIME BRATTY PANTS, Corey Blake.  If you don’t know this guy, you’re missing out.  Standing almost 6 feet tall you’d think that if you’re short like me, you’d have to look up to him and would NEVER be on his level.  This is so not true.  This guy talks to all he encounters as if he is equal with them.  He has the most compassionate heart I know and he is obsessed (in a good way or at least I like to think that I tame that back as if I control him-ha!) with KITTIES!  If he had his way, he’d fill his life with so many kitties he wouldn’t be able to find himself.  He wants to be a kitty for goodness sakes.  As you can guess, our Cleo Kitty is in very good hands.  He is also incredibly funny and talented on the stage and if you haven’t seen him do his thang on the stage or in front of the camera than you are truly missing out on a miracle in action.  He absolutely lights up the stage.  He is my inspiration for getting out there and just doing it.  I myself can’t believe he would stay with me with all that goes on with me with my health but he has been there from THE BEGINNING.  We had only been dating for 2 weeks and my best friend kitty (my sister growing up) passed away and he was there while I grieved.  Only 3 months later my dearest bestest Nana in the entire world who I adored more than I can even describe passed away AND he was there…the ENTIRE WEEK AFTER.  We traveled across the country together to pursue our dreams in Los Angeles, CA from New Hampshire and Massachusetts.  We built our lives here and have just celebrated not only 15 years together as a couple, but 6 years married, 12 years with our dearest Cleo Kitty daughter and 13 years here in LA!  He was with me when I was diagnosed with MS almost exactly 10 years ago.  He was with me when I was diagnosed with lupus over 2 years ago.  And he stays.  He also proposed to me on Waikiki Beach at night at the edge of the ocean, with the moon glowing and the stars twinkling (just to give you an example)—so romantic.  We had the funnest wedding ever and kept it the way we wanted it with our own silly flare.  Thank goodness we laugh and keep it light.  Our conversations travel on the path of silliness, to snippy snappy (our version of fighting), to serious, to meaningful, to heartfelt, to honest, to feelings, back to me giggling so hard by something he said that I’m crying and can’t breathe.  Can you tell I love the guy?  Sure he drives me crazy (uh oh, he’s reading this and might be upset with me for saying this or worried) but that’s because we are the closest to each other and we need someone to drive us crazy.  Apparently none of us are perfect.  And I’m oh so sure I NEVER drive him crazy.  Nope.  Through our ups and downs and such great and amazing times, it is us.  We are a team and I am so THANKITUDEFUL for that.

3. I’m THANKITUDEFUL for my daughter kitty, my Cleo Kitty.  That little girl of mine (is not a little girl in kitty age that’s for sure) is so mature and wise.  She teaches me how to live in the moment.  How to take things as they come.  To stop and play and enjoy myself.  That life is about living in the moment.  She is my BEST KITTY FRIEND.  I adore her.  She was a stray who had clearly been domesticated at some point in her very young life when she was found and really just wanted to live inside and not have to deal with the crazy outside world anymore.  When we met her it was love at first site for both Corey and I BUT it was clearly love at first site between Corey and Cleo.  I was just the extra for a long time.  She’d put up with me in order to be with Corey.  She was smart.  She knew the deal.  Over the years we have built our own very special and connected relationship that warms my heart.  She is my best kitty friend, my health partner (she was diagnosed with cancer in December of last year–almost a year ago) and we take care of each other.  We take turns.  She really does watch over me and I try to do the same.  She understands A LOT of English and gets frustrated that we don’t understand Kitty Language but we’re definitely getting better at it.  She plays, she loves, she sleeps, she is our alarm clock, she looks for support in all areas when she’s not comfortable with something, she is our companion and we love her so.  She really has done well and we had only 2 close calls with her life in the past few months.  One was from trying a new medication but she pulled through in about 24 hours and the last was almost 2 weeks ago.  This one might have also been a medication reaction but in all fairness, she has cancer and a weaker body immune system and is very sensitive with digestive issues and with some breathing issues we’re still trying to narrow down.  I am truly THANKITUDEFUL to have her in my life still.  She’s decided she’s not done yet and we are doing our best to help her feel comfortable and happy and if anything she is still very happy.  Every moment more with her is a true blessing.

4. I’m THANKITUDEFUL for all living supporters on my path.  That includes you.  These living supporters are people (friends, family, people I connect with out in the world, Facebook people, online people, Twitter people, the people I small talk with all the time, my doctors, any people in any part of the medical world I continuously find myself in, anyone who helps me or who I can help), dogs, cats, plants, the earth and nature.  You name it.  I am serious.  Any living thing.  I believe we are all connected in some way.  That doesn’t mean we have to all love each other or even like each other.  However we are all here for each other.  We are all alive and giving feedback in some way.  And as a part of this, I LOVE PEOPLE.  I do.  PEOPLE ROCK!  Sure some of them are more likeable than others.  Some I may not even really want in my life BUT they are there for a reason.  We all have something to give.  We are all just us trying to be US.  That is it.  And yes at times we can all be jerks (yes, Nahleen’s ego–you too–I still don’t believe it), and truly unlikeable (of course Nahleen’s ego has no idea of what I’m talking about) but it’s true.  And so to get away from this silliness I just wrote, I look forward to more and more connecting.  It is what keeps me going.  I think connecting with people is one of my hobbies.  I am so THANKITUDEFUL for you all.

5. I’m THANKITUDEFUL for this Blog.  I feel like this is inconsequential since the other 4 items on this list are so personal and why would I just feel this way for a Blog?  Well, it helps me write which is something I believe I’ve been meant to do for a long time.  I just need to write.  Not sure what that means but this is my 141st Blog post so I guess that means something.  I had no idea my Blog would go this far.  I had no idea I’d have this much to write and oh so much more!  I had no idea that anyone would want to join me on my journey.  I didn’t think anyone would care (again, about my crazy mean mind sometimes as posted above).  I didn’t know that I’d even be silly and post about ’80s songs or post any pictures.  I just didn’t know.  Once I jumped in this time I was ready.  It was time.  Thank you for being there.  It is so cool for someone such as myself who has to spend so much time at home resting and taking care of myself in order to get through the day.  So much self care to do and most often this has been added to my list of things I NEED to do to survive.  Sometimes it’s taken off because I need to pace myself and just breathe.  It all really depends.  And you know what’s also so cool?  Hearing from you!  Getting comments on my posts has been one of the coolest aspects.  I just love it!  Thank you to so many of you for encouraging me along the way and even way before I could really commit to it.  You know who you are.  You rock!  I am so THANKITUDEFUL for this Blog of exploration, silliness and connection.  I can’t wait to see what the future holds for it!

 

So that’s that.  I think that’s enough for today.  I really needed to write this.  The nudge has been on me to write something like this for a few days now and maybe I can breathe a little easier knowing I got it out.

Thank you thank you thank you.

DO YOU HAVE ANY THANKITUDES you would like to share?  I’d love to read them!  I have a feeling we all would!

Take care all.  Will write soon I’m sure.

 

 

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150 DAYS OF WALKING!

WOW! I have walked every day for 150 days!

AMAZING! I would never have guessed that I could do that before Physical Therapy almost 5 months ago. NEVER. And how does that saying go? “Never say never.”

Hey, if that’s true, I’ll say I’ll never lose the weight I want to lose ever. Do you think that’ll work? So I’ll be losing weight from now on right? Ha! If only. But you never know.

I am so proud of myself. I think it’s really paying off. I make it a point to take a walk. It may be 5 minutes or 30 minutes. It all depends on what I’m doing. It may be outside, inside, a walking dance meditation or I march in place. The point is, I’m doing it. That’s almost 5 months of moving my legs.

How cool is that? I have multiple sclerosis and lupus and I have been walking EVERY DAY now for months. I have walked even during this crazy hot summer, through hard times, better times, illnesses and you name it. I have WALKED.

One day at a time!

And I don’t plan on taking a day off from walking any day soon…

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