Posts Tagged With: doctors

Doctors: Please Take ME Into Consideration

Posted on June 2, 2013 by Nahleen

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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The Crud of Healing

Posted on May 6, 2013 by Nahleen

I’ve been sort of MIA lately because I’ve been doing a lot of healing. And man is it hard.

It always seems to me like healing should be something soothing and soft and gentle. Sure that happens sometimes in the process of healing. Then again, there are those skinned knees that scab over again and again and no, that’s not comfy at all is it? Lately it’s been some of the hardest crud I’ve gone through. And I mean crud. Yet deep down I feel like it’s time. This is it.

As I’ve mentioned before, I’m now seeing a Chiropractor at least once a week. He wants to see me twice a week but so much crud (he uses that word and I’m starting to use it again) has been coming up that it takes me a week to heal from it. Yet, it’s all a good healing. I’m beginning to feel like I can become a whole person. I feel better even though my body gets twisted and contorted in weird ways. And/or he has me working on some emotional healing within the therapy.

Right now his new technique for me is something called NET or Neuro-Emotional Technique and it is fascinating. I can’t really explain it except that he was able to tell just by pushing down on my uplifted arm and putting his finger in the middle of my forehead that I had emotional blockage somewhere in my body and that that was playing a huge part in my physical symptoms and my messed up mind these days. It was crazy. When he didn’t put his finger in the middle of my forehead and pushed down on my arm I was able to push back up. When his finger was on my forehead and he pushed on my arm it went straight down and I had no strength to push back. He had basically disabled my arm. CRAZY AND FREAKY. Apparently it’s sooooo many emotions that are just flying all over the place and I’m not sure what to do with all of them so my body stores them for me and well, let’s think, that’s probably not good huh? So not only am I dragging up feelings and emotions but now they’re all just apparently free to come on up even when I didn’t invite them.

CRUD CRUD CRUD.

I’m also going to a Therapist now who I believe was sent to work directly with me. She loves the color purple, she’s bright and peppy, her office is close to where I live, and she’s also very compassionate and knows how to reach me in ways no one else seems to be able to–even ME! She’s revealing a part of me I didn’t know existed or just wasn’t ready to know or something. Talk about uncomfortable YET it really is helping. I feel like I’m getting detoxed of yucky poisonous feelings. She’s cracking my shell and the feelings are just flooding out.

Apparently it was time for all of this to come up. Wish I had gotten the memo from me that it was time to really work on all this stuff.

It’s kinda crazy how it happened that I found these 2 very important Specialists on my path right around the same time.

Next thing I know I’m in the Chiropractor’s office at the first appointment and I’m wondering how I got there and how is it that it all happened so fast. I mean my friend had just been raving about him and there I was. Then I end up having 2 doctors arguing (and not even knowing it) over a medication I’m on and telling me I should see a Psychiatrist to see what the actual Specialist says about it all and the next thing I know I’m in a Psychologist/Psychiatrist’s office and again, kinda wondering how I got there.

I’ll repeat, it would’ve been nice had someone informed me this was all gonna happen. Don’t get me wrong. I didn’t black out and become another person or my alter ego…at least I think I didn’t…no really. I remember asking about these 2 Specialists but I don’t remember deciding to take the action. Hmmm, could it be that I’m not taking FOREVER to think it all out as much as I used to and perhaps I’m going more with my gut? That I’m following the Path I’m supposed to be on and just doing it?

Still…WOULD’VE BEEN NICE TO GET THE MEMO.

Just sayin’.

So for now I’m going to try to take the advice of these 2 incredibly valuable Specialists who have already changed my life in less than 6 weeks and try to be patient. They both tell me that crud is going to come up, that things are going to be messy and that it’s okay that things are messy. Really. It’s okay if things aren’t all done my way.

Weird. I mean it’s all supposed to be done and planned in an orderly fashion or at least “Nahleen’s orderly fashion”. Well that’s not happening.

I’m feeling incredibly uncomfortable, exposed, vulnerable and raw and yet I’m feeling the safest I’ve ever felt…whatever that means.

Guess there’s more to find out. I get to find out about who this shiny new Nahleen is I’m becoming. My Therapist encourages the purple hair. She says it’s only the beginning. Now it’s time for more piercings and tattoos according to her…She’s convinced there’s a much more wild and open Spirit in me just desperate to come out and she’s trying to gently tell all of me that it’s okay to come out.

So for now I just keep on trudging through the crud. I feel like a clam who just lost its shell and now waits to be eaten by the predator who broke that shell. Poor clam. I feel so bad for it. Must be awful. I’m such a softie. Hey that can be my new Activist project. SAVE THE CLAMS!

Perhaps another time…Continuing on this side note, I’m so relieved I don’t like to eat clams or I may have just ruined any chance of ever eating them again.

What’s cool is I’m pretty sure I won’t be eaten and that I’m going to be OK. Crud and all.

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LIFE: ALWAYS IN SESSION (A BLOG POST NOVEL BY NAHLEEN BLAKE)

Posted on January 8, 2013 by Nahleen

THIS IS MY 150TH BLOG POST!  Woo hoo!  Go me!  I think part of me was holding off posting this HUGE MIND BLOWING BLOG POST for my 150th because my goodness, it’s my 150th post!  There should be fireworks and you should all be touched FOREVER by all that I have to say. 

OK.  Well, first of all…EGO.  Yes, I have one.  It can get in the way but it helps sometimes…I suppose.  Second of all, WHAT THE HECK?  Fireworks?  Really?  I’m so weird.  I get one compliment from someone and I feel like I don’t deserve it and WOW “they really like me” and my favorite quote that Corey always teases me about, “I’m just being me” as if I’m not good enough for a compliment.  BUT THEN, I want to have words that LIVE ON FOREVER AND EVER?!

Well, no wonder no Blog was coming out.  Conflict and pressure.  Geez!

ANYWAY…

To be honest with you, I don’t know what’s going to come out of these hands as I type.  My head has been all over the place and there has been so much of life happening that I think it almost silenced me.  I know.  HA!  Yeah right!  But it kinda did.  I mean, I had to have a Blog post in order and outlined (not that I ever have…Ahem) before it had to be written.  I had to have a clear head before I wrote it.

Um, it’s the New Year.  Is anyone’s head clear right now?  Is anyone’s head EVER clear?  Really clear?  I mean, like it’s all in order.  I doubt it.

So here I am and this may be a stream of consciousness.

BUT before I go any further, I want to make sure to hit on a few things before I go off on tangents again:

1. HAPPY NEW YEAR 2013!  Turns out the world DID NOT end and we are all still here…I think.  Well as far as I know.

2. WELCOME to all my new followers.  Thank you for helping to encourage me that past posts are worth following.

3. THANK YOU to all of you for joining me on this crazy journey called life and what I like to call, “Life In Nahleen’s Head”…I hope you’re all wearing your seat belts.  My head can get crazy and I’m sharing it with you.

4. TOPIC (at least I think this is what the topic is for this Blog) “LIFE: ALWAYS IN SESSION”.

You know, the first time I heard those words from a very wise person I know, I was beside myself.  How profound that sounded.  How simple that idea is.  Life is always in session.  There’s always something going on.  There are always errands to run, people hurting, happy people, the weather continues to change, and really nothing stays the same does it?

So why is that idea so hard?  Why is it that it’s so hard to accept that life is always happening and changing?  Well, for me it’s that YET AGAIN, I gotta morph to it and be flexible.  Ew.   AND if a new event pops up in my life, that doesn’t mean the rest of life STOPS.  Wouldn’t that be great to be able to stop all of the other stuff, you know like stop time whenever we want and how we see in fantasy/sci-fi movies and they make it look so easy with their special effects, that we STOP everything else so that we can take care of this SPECIFIC thing that’s happening?

But then, if it’s something that’s really hard to deal with, then we have to be ready to deal with it.  So, then when do we stop the rest of what’s going on in our lives?  And hey, maybe we don’t want to stop that other stuff.  Maybe it’s the other stuff that helps to keep us going right?  Or maybe it isn’t. 

But the point is: LIFE IS ALWAYS IN SESSION–DANG IT!

I had to add that extra part because well, it’s how I feel most of the time even if there is more than one good thing going on, well then what comes first?  How do I prioritize?  How do I process it all in my crazy filled head?  Isn’t it already filled to the brim?  How can it take on more?  Should it take on more?  Does it need to be handled right away?  WHAT’S GOING ON?

ACK!

Then I turn into the loveable Tasmanian Devil from those wonderful Looney Tunes cartoons of the past and away I go.  But where do I go?  Usually I’m just spinning in place.  But if I’m spinning, I probably don’t have my feet firmly on the ground now do I?  I probably haven’t paused to breathe. 

AND MY HEAD JUMPS IN RIGHT NOW AND ASKS:  WHAT?  BREATHE?

What’s breathing?  Well, there’s the involuntary breathing that thank goodness our bodies are already programmed to do.  Thank goodness for that huh?  I mean, imagine if we didn’t have that involuntary process.  Hmm.  Oh how different life would be.  Would we make it as humanity?  I don’t know about you, but quite often I find myself forgetting to take those intended deep breaths that help get the oxygen into my body and brain and usually help me to relax and calm down even a teensy tiny bit.  So then I’m sort of I guess holding my breath.  Well that’s not good.  The body needs to be doing both kinds of breathing in order to survive the best way: involuntary and voluntary.

SO WHAT AM I GETTING AT HERE?

Well, somewhere along the way in late October or November (or maybe I had never REALLY found myself even a bit at all) I LOST MYSELF.  Where’d Nahleen go?  I’m sure she was there.  I speak of myself in third person on purpose.  She was out there handling the world the best way she knew how.  The holidays were coming upon us.  Cleo Kitty was going through a bit of a hard time and we had to cancel our little Wedding/Together Anniversary Trip to stay with her.  Wouldn’t have changed that for anything but I think it played a part in things.  (I haven’t had a chance to get away for over a year due to either my health or Cleo’s, both or just life reasons in general and I’m feeling it.)  But then, Cleo got so much better and we nursed her back to health, after bringing her to her wonderful new vet who was ONLY a second opinion vet for her back in February of 2012 because we thought she was dealing with cancer. 

BUT then come to find out a few weeks later with a very different care regimen for Cleo, that she was UNDIAGNOSED with cancer because it had been a year since her DIAGNOSIS OF PROBABLE CANCER (Corey and I had made the decision along with Cleo, NOT to do any invasive testing on her and to just let her be a kitty and keep her comfortable as long as she needed it) and as her new vet told us, she was showing NO SIGNS of these probable cancers and she DEFINITELY WOULD BE BY NOW–and that was in November 2012 I believe.

Well, then how AWESOME WAS THAT?!  A true MIRACLE!  I would love there to be more UNDIAGNOSES FOR ME AND ALL MY LOVED ONES AT THIS POINT.  She does however have a very sensitive immune system like I do (oh the parallels of our health together can get a bit too creepy sometimes if I think about it too much) and probably has asthma, IBD of some sort and probably chronic upper respiratory infections that will affect her off and on so we gotta find balance with that.  BUT STILL!  As Corey put it, there was no DARK LOUDLY TICKING CLOCK (Edgar Allen Poe comes to mind) HOVERING OVER OUR LIVES ABOUT how many days Cleo had left.  Sure, she’s older and has immune issues but her life is wide open.  AND YOU KNOW WHAT?  She’s doing EVEN BETTER now.  It helps to be told you don’t have cancer and to see that your people are even brighter about you now I’m sure.  I believe she’s more youthful than she’s been in a LONG TIME.

So yay about that right?  OF COURSE!  But I think it lifted me off the ground even more and it was hard to trust anything after that.  What was real?  What wasn’t real?

THEN THANKSGIVING HAPPENED.  That was a great day.  It was so nice to be of service to others.  Corey, our friend Aaron and I volunteered at a big event that welcomed ALL to come together as a COMMUNITY and cook, eat, cut hair, make crafts, have a kids carnival in the morning, dance, sing, get free check ups from doctors, get family photos, give away and pick up free clothes and the list goes on and on.  Apparently, the event was an absolute success.  I had the PRIVILEGE of being a VOLUNTEER to sit and eat with people and talk to them.  Well, that’s no problem for me now is it?  To be honest, it was a bit awkward at times.  Usually if it was a family I sat with (I think I sat with at least 4 different families as the event went on) and there were kids, it was the kids who were talking to me, not the adults.  Well, that was fine.  I love kids.  I always have and find them very easy to talk to.

MEANWHILE, as all of this was happening, I was still waiting for Social Security Disability to come through and get their payments to me correctly because it helps to have money but at the same time, I saw all of these people who had so much less and it started to not matter.  At some point along the way, I don’t even remember the day which is AMAZING, they did come through and it looks like the payments are FINALLY coming in right after 2 years of waiting for them to get it right.  Still have a few things to iron out with that but I’m ok.

I DON’T REMEMBER THE EXACT DATE THIS ALL CAME TO A HEAD, (again, Amazing that I don’t have the exact date etched in my head), BUT MY DIGESTIVE SYSTEM STARTED FLIPPING OUT AND I COULDN’T EAT ANYTHING WITHOUT FEELING LIKE MY STOMACH WAS LURCHING AND TRYING TO JUMP OUT OF MY BODY.  I’m convinced that the writers/producers of the movie “Alien” had had digestive problems of some sort because THAT IS WHAT IT FELT LIKE…I couldn’t eat a half piece of toast without feeling like my organs were trying to jump free from my torso.  SOOOO, after being on those HORRIBLE digestive antibiotics for what I’m now finding out was way too long, I found myself in the ER.  I had asked my original Gastroenterologist at the time if I should go and he told me NO.  Well, it’s a good thing I listen to my own body because I called Corey and asked him to come home from work and drive me to the ER.  I couldn’t take it anymore.  It was the day of the huge storm Sandy on the east coast.  I think my timeline is off here but oh well.  Anyway, I remember that because there was a TV in the ER Exam Room I was placed in and I got to be entertained and mortified at the same time (I’m a weather geek but I do have a heart) while I felt so horrible.  They did bunches of tests and gave me some drugs, said they didn’t see a lot but sent me on my way.  I did feel a bit better but I needed more than that.  I found a way to be referred to a second opinion gastroenterologist (was a bit roundabout because my group of doctors pretty much all know each other and are all kinda in it to help each other and I knew I wouldn’t get very far asking my Primary because he’d still stick with what the original Gastroenterologist doctor had said to do and that would’ve gotten me in more trouble) and was able to see this new second opinion specialist almost immediately.  What’s great about going to the ER is that all kinds of tests were done and having been an experienced veteran of the ER experience I was somehow with it enough to ask for all files and records of what had been done so that all of my doctors could get these answers.  So glad I did that.  I brought all the records and results to this second specialist and after a few questions (the right questions I guess) I was able to get a fresh perspective about what might be going on with me.  He is now my current Gastroenterologist.  I won’t go back to the old one.  The old one helped me so much for two years.  I need this new guy.  He’s very calm and calming, he knows exactly how to handle a crazy planning person like me, he keeps me much more present and in the moment, he is very clear about what he knows and with his help I was able to be diagnosed with IBS or Irritable Bowel Syndrome.  I’m still currently on a treatment to help get rid of the flare but if you ask me it’s been long enough.  That’s just my head.  Honestly, how cool that this is a medication that I don’t have to be on FOREVER and that my diagnosis wasn’t too hard this time.  He said EVERYTHING I’ve told him of my symptoms and feelings is sooooo common for IBS that he has no doubt.  WHAT???  I have something that was easy to diagnose.  It’s never happened that way before.  Almost felt like something wasn’t right.  With this new doctor’s help I have been feeling much better since.  The flare is not cured just yet and may never be where I want it but with his help, he has GREATLY CHANGED THE QUALITY OF MY LIFE.  I had NO IDEA how much my body was really suffering from this issue flaring up like it was.  NONE.  SO YAY ABOUT THAT.

SO AT SOME POINT THAT FIRST WEEK AFTER THANKSGIVING, a crazy switch went on in my head and I started feeling what I call HOLIDAY AFFECTIVE DISORDER.  Some call it SEASONAL AFFECTIVE DISORDER but I use Holiday instead because I start to really feel different and like the decorations have to be up, the gifts have to be bought, I need to bake, will I feel OK to do any special event and the list goes on and on and on.

SO AS MY HEAD STARTED ITS HOLIDAY CRAZINESS, the next thing I know, I FEEL AS IF THE FLOOR AND THE WORLD ARE BEING PULLED OUT FROM UNDER ME…Why you ask?  Well, the Private Long Term Disability Company that I was also getting assistance from, had been doing a two year review of my health and my case.  They bothered all of my doctors yet again with requests for records, files and very vague evaluations.  Oh and I had to fill out my own assessment form too.  My two years is actually not even up until January 29th, 2013 so isn’t that interesting.  BUT on November 21st, 2012 they decided that they would terminate my coverage and not tell me right away.  BECAUSE OF THIS LONG TERM DISABILITY COVERAGE that I had been paying for at my Old Employer for over ten years while I was still actually working, I was able to be covered by THE AWESOME HEALTHCARE PLAN of my Old Employer up to five years as long as this Disability Company said I was Disabled.  NOW THIS WAS NO SURPRISE that they terminated my Disability Coverage.  I had been warned from the beginning by the first Claim Manager I dealt with in that Company that at the two year mark it would be really hard to get coverage.  But see here’s the thing, I ONLY FOUND OUT because I got something really weird in the mail about how much they were paying me in November (it was much less) and no explanation for it.  So ME BEING ME, I called the Claim Manager to inquire about it.  THIS WAS THE LAST WEEK OF NOVEMBER 2012.  She got a bit tense and quiet and said that oh no, the mail must’ve been delayed for some reason and the two items sent in the wrong order or something but that my coverage had been terminated as of NOVEMBER 21ST.  That was the day before Thanksgiving.  I did my best to keep my cool with her on the phone and made sure she explained the Appeal Process but she really didn’t want to do that and then I got off the phone. 

I FREAKED OUT!

Well, of course I did.  First, I find out the hard way that I don’t have their coverage.  Then I KNOW THIS MEANS I’M LOSING REALLY AWESOME AND GREAT HEALTHCARE COVERAGE.  So, I called the Director of Benefits at my Old Employer and told her the situation.  I called her on NOVEMBER 28TH.  She told me she was very upset for me and for her department because this Disability Company had put US ALL in a bind.  WHY YOU ASK?  Well, ignoring the obvious reasons of this all sucked, it meant that my HEALTHCARE COVERAGE WITH MY OLD EMPLOYER WOULD HAVE TO BE TERMINATED BY THE END OF THE MONTH.  Yes, you understand.  NOVEMBER 30TH would be my last day of COVERAGE…

WHAT?!  NOW WHAT?!  FREAKAGE GALORE!  The Director of Benefits apologized to me for this situation, I told her how the Disability Company had handled it and told her some more personal things about what I was going through and she was appalled and said that she’d have to really look at their contract with this Company because there is something very wrong with the whole process…

YES, YES THERE IS…

AND YES I’M GOING TO APPEAL…when I can get myself together.

YOU SEE, here’s the thing.  This is how I know I’m being watched over by something–call it the Universe if you like.  Because Social Security had pulled their business with me together FINALLY, they had decided they would retro-cover me back to December 2010.  After two years of coverage, then I’d be eligible and automatically enrolled in MEDICARE.  So I had already received this stuff from Medicare, was having pride issues of being on Medicare at only 35 and having a hard time accepting it but during this state of panic about healthcare coverage that I can’t afford to live without due to my MULTIPLE SCLEROSIS AND LUPUS (hello, I CAN’T WORK EVEN IF I WANT TO RIGHT NOW–THEY DIDN’T JUST GET CURES AND GO AWAY), I managed to pull out the paperwork and see that I had MEDICARE COVERAGE AS OF DECEMBER 1ST for Parts A and B.  I could choose about Parts C and D.  What’s C?  I’m confused about that one and it’s not important.  What’s D?  Oh well, then funny you should ask.  That’s Prescription Coverage that I can opt into in Medicare if I decide to.

OK.  WELL THEN THAT WOULD’VE BEEN FINE AND DANDY WITH NOTICE…However, I had no notice.  Sure it was so miraculous to put it lightly that my OLD EMPLOYER HEALTHCARE COVERAGE ENDED ON NOVEMBER 30TH AND MY MEDICARE COVERAGE STARTED ON DECEMBER 1ST (no kidding there) but I had just had a conversation with the Director of Benefits at my Old Employer two weeks before (neither of us knowing my Disability Coverage would be terminated) and she told me not to worry about the Prescription Coverage Part D Part of Medicare because I could still get that coverage with the Old Employer Healthcare Coverage and all would be fine and dandy and so much cheaper and less dramatic…

BUT THEN I HAD NO HEALTHCARE COVERAGE BUT MEDICARE…

MORE FREAKAGE…I honestly could not even do ANYTHING about it all for at least a week.  I was COMPLETELY DEFLATED and at the end of my rope.  Well, sure there was rope but it was a very very thin thread and I refused to even pull at it or even grab hold.  I HAD HAD IT!

SO WHAT DID I DO YOU ASK?!  Well, I found myself suddenly making a hair appointment at a new salon that deals with curly hair (had been coloring my own hair purple for eight months at that time and hadn’t had it cut for eight months either and it needed to be taken care of badly), getting two new hair cuts (the first one didn’t fit me at all and well, I hadn’t had the coloring done just yet–only the consultation–so when I came in for the coloring appointment I had a big heart to heart with my stylist/artist about what I really needed to do with my hair for me at that time and she listened, understood and together we collaborated to cut my hair a lot shorter and get the purple I really wanted.), one of which (the final) will apparently be featured in their salon book because this Junior Stylist/Artist was being watched by the Senior Stylist/Artist and LOVED what we came up with and NEEDED TO GET A PICTURE RIGHT AWAY OF IT TO SHOW OFF TO EVERYONE AT THE SALON AND THEIR CLIENTS.  This guy also told me I was a true artist and it was so much more me.  Going through that whole experience is what I think I needed to find some of me at some point.  At least for the holidays.  I needed more oomph and acceptance of me because I felt so scared and defeated.

THEN: I GOT A CRASH COURSE IN MEDICARE–while still infuriated and hurt and disappointed and panicking about coverage.  Calls were made, notes were taken, website was looked at, advice was asked, and then an hour and a half on the phone with a company that may have handled the Prescription Coverage (the lady was so nice and patient) due to my long list of medications and BECAUSE my MS Medication is such a huge dramatic and EXPENSIVE pain in my butt and always has been in my over 10 years of diagnosis (10 years was December 2nd, 2002…so that was going through my mind too) and I’ve always had to jump through hoops to get it even with a PPO…Meanwhile, Corey was going through Open Enrollment for Benefits with his Company and he kept asking me if I wanted to be on his Plan and from what I could see, it looked and seemed to me like it would be more expensive but I guess I didn’t understand what I was looking at because at the last minute before he completed enrollment, he called me from his work and we went over every detail of the coverage if I was part of his plan and we ended up signing me up with his HEALTHCARE PLAN TOO!  SOOOO, AS OF TODAY, JANUARY 8TH, 2013 I still DON’T NEED MEDICARE PRESCRIPTION PLAN PART D yet….PHEW! 

OH AND I’M COVERED BY TWO DIFFERENT PLANS RIGHT NOW: COREY’S HEALTHCARE PLAN AND MEDICARE.  Can’t have asked for better coverage at this point.

BUT BOY WAS THE PROCESS ALL HELL.

OH AND SOMEWHERE IN THERE I started getting an upper respiratory/sinus infection and had to hurry to the doctor and be thrown on antibiotics to try to kill it right away because they don’t want to take any chances with me and my diseases and immune sensitivities so that was NO FUN.  But it made the infection go away and I’m grateful about that.

MEANWHILE, we celebrate Christmas and so Christmas was happening…Oh yeah.  That too.  I was doing pretty well at this point.  My body was handling everything very well.  I’D LIKE TO PUT A SHOUTOUT TO MY BODY AND THANK IT FOR ALL I PUT IT THROUGH FOR OVER A MONTH!  It let me do a lot of holiday things.  I even competed in a Cookie Swap Party and won 1ST PLACE with my special “Nahleen’s Special Snowball Snack Cookies” and was so touched and surprised to have won.  I’ve been making those since I was ten I think, so like twenty-five years…Crazy.  I feel old…But so cool to win.  I don’t think I’ve ever won first place for anything.  And you know what, it was a really nice Christmas.  I missed my loved ones back east big time this year but Corey, Cleo and I pulled off a pretty darn good one.  And things were starting to fall into place…

HOWEVER, THERE’S STILL SO MUCH TO DO with all this Healthcare Change stuff.  Gotta find out how to get my MS Medication (might I add that the Company who handles my MS Medication and the woman assigned to work with me to get it are absolutely WONDERFUL and I swear that woman is an Angel sent to help me–so sweet, so helpful, funny, knows more about my benefits than I do and so on) the right way although they’ve been sending it to me for no charge temporarily while it gets worked out–AMAZING!  I still need to change all my doctors over and let them know about my insurance situation.  I still need to change all my medications over to the new Prescription Plan.  It’s all new.  It’s all Change. 

CHANGE.

THEN NEW YEAR’S CAME AND HAPPY NEW YEAR 2013!  WE MADE IT! I had a great time with a friend watching Corey on Stage after he had been up for a bazillion hours because it was a One Day Play.  The writers had worked on it overnight, the actors and director showed up in the morning and they had to perform a play twice that night at 8pm and 10pm.  It was a crazy, funny play that left us all wondering what really just happened but it was great to take in the New Year with a laugh.  A friend of mine came with me and it was nice not to go alone too. 

MY BODY HUNG ON UNTIL JANUARY 2ND, 2013 and then CRASHED.

I woke up on January 2nd and my whole body felt inflamed.  It was like it was holding on for me as long as it could and when it felt safe, it let go.  I felt like I was on the verge of an MS Attack, a big Lupus Flare, and every symptom I ever felt ever was happening.  And if it didn’t happen that day it’s been making sure to still show itself today, January 8th.  I’m very fortunate to have a body that gives me lots of warning before it attacks.  If I listen to the warning and rest a lot than usually I can avoid any major action like being PUMPED WITH STEROIDS IN THE HOSPITAL FOR 3 DAYS TO TREAT AN MS ATTACK, or who knows what would happen with the LUPUS and how all that would happen.  I am grateful because not everyone with MS or lupus has that “luxury”…

During this past week I’ve been thinking I’ve wanted to FINALLY write my 150th Blog Post Finally and to get it out but it’s been locked in.  I think I’m pulling a bit into my cocoon to protect myself and because I’ve had enough.  I have to lessen the amount of activity I do and everything has really had to come to a halt or what I consider a STOP and RECOVER.  The RECOVERY to me is taking too long of course and the anger has come back up.  I keep thinking about what I “SHOULD BE” doing or what I “HAVE TO BE” doing and that gets me into trouble.

There’s still so much to handle with the Appeal and cleaning up the healthcare mess, and still having less money and with life, like laundry and grocery shopping and paperwork and managing Cleo’s health, and trying to have a life, and not being able to exercise as much and and and and and—I COULD GO ON FOREVER…

BECAUSE: LIFE IS IN SESSION.  IT IS ALWAYS IN SESSION. 

BUT I WANT TO END ON A POSITIVE NOTE:  DESPITE EVERYTHING THAT HAS BEEN GOING ON, I HAVE TAKEN A WALK FOR OVER 250 DAYS AND I KEEP ON WALKING…

GO ME!  GO ME!  GO ME!

So now it’s time for OPERATION: NURTURE NAHLEEN.

What’s that you ask?  Well it really occurred to me yesterday that I’ve learned to LOVE myself quite a bit BUT I’m not nice about it.  I’m not COMPASSIONATE, NURTURING, GENTLE, UNDERSTANDING, CONSIDERATE OR EVEN RESPECTFUL about it.  I tend to be mean about it.  Sure I’ll do what I need to do for rest and I know this is the body I have and I’m learning to LOVE IT but what about LIKING IT.  IT’S ME.  It’s part of who I am.  If it were someone else going through all of this health stuff all the time I’d tell them to be nice to themselves and take it easy, to be gentle and get some rest.  HECK, even if they have sniffles I’m telling them to take care of themselves and I’m so loving about it.  DO I DO THAT WITH ME?!  NO.

SO NOW I WILL FINALLY STOP WRITING AND GET BACK TO:

OPERATION: NURTURE NAHLEEN

It won’t be easy.  It was much easier yesterday than today.  I’ve wanted to rebel today.  But I’m determined to work on it and I know that with practice it will become easier.  That it’s not about perfection but about progress…

***And I really want to thank all of you who have supported me, talked to me, listened to me, loved me, hugged me, smiled at me, accepted me and been there for me this whole time.  No one should have to go through anything ALONE and I was never ALONE nor did I feel ALONE.  We are all in this together and I really felt ALL OF YOU holding me up and together.

THANK YOU.

 

 

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AND…I’M BACK!!!!

Posted on December 11, 2012 by Nahleen

Yes I’m here!

Dang DSL is back up and running and apparently so am I!

There’s a lot of life going on here.  There’s the holidays, doctor appointments, taking care of me (full time job), more disability issues that seem never ending and insecurity there because one entity terminated my coverage which then cut off my healthcare coverage, but then I happened to go on Medicare (having pride issues about going on that at age 35 but at the same time so GRATEFUL to have the coverage) LITERALLY the next day after being cut off, yet at the same time there’s a whole Prescription Part D of the Medicare coverage that I had not enrolled in because I was told by my healthcare people not to worry about that since they would cover the Prescription part of my healthcare, but then that couldn’t happen because they had to cut me off due to the disability entity being connected to my work and they gave me no time to sign up for that part which I believe is illegal, so now I’m trying to find the time, energy and patience to sign up for a Prescription Plan and have to pay out of pocket for my medications until I do so and I HAVE NO IDEA HOW I’M GOING TO GET MY GILENYA MEDICATION FOR MS BECAUSE IT’S SO EXPENSIVE (that’s tomorrow’s priority call), I’m also trying to appeal all of this but before I do that I need to be able to even get through reading the horrible termination letter from this disability entity that is so upsetting for so many reasons, so I’ve been dealing with feelings and emotions, picking myself back up, getting a new hairdo that I plan on showing pictures of very soon, dealing with an undiagnosis of cancer for our dearest Cleo Kitty yet she still has a very sensitive immune system and we are trying to balance all those issues, along with my newly diagnosed IBS acting up because the treatment just isn’t cutting it, along with having multiple sclerosis and lupus, having a really neato husband who’s always there and supportive and trying to spend time with him while he’s making changes, trying to have a social life, doing my best to stay sane, be in touch with lots of people, trying to rest and recover and it goes on and on.

I made that a MEGA RUN-ON sentence because I think it helps to see just how OVERWHELMED I am and how big my life is.  Sure there are a lot of really great things going on but they are intense and I truly believe I’ve been on a spiritual journey for quite awhile that is really helping but a lot of work.  HOWEVER, there are some really seriously scary things going on with this current healthcare insecurity and financial insecurity and a lot of feelings of anger yet at the same time it’s the IBS that’s acting up and my MS and lupus have calmed down.  BUT I have to be careful of that because that could change at any time especially if I don’t do all the self-care I need to do and get enough rest.  And hence things get done when they get done and that’s how it is.  As a person who is a Type A personality at the core and has had to really unwind that over the years, it still hits me every time and I struggle with it trying to get myself to just calm down.

It’s hard to PRIORITIZE right now but I’m taking it moment by moment and breath by breath.  Day by day is the best I can do.  By the way, did you know that BREATHING and taking extra BREATHS helps???  I mean who knew?  I’m really finding out that I hold my breath way too much so I’m trying to work on that.

WOW!  I’m tired just from writing this.  My Cleo Kitty is calling me.  She beckons quite often these days.  Gotta love her.  She is quite a spirit.

I hope you are all well and that I can write more soon.  Take care and I hope you can remember to breathe during this time of the year too.  Turns out it’s quite important to do…

 

 

 

 

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Happy Halloween and Health Update!

Posted on October 31, 2012 by Nahleen

Happy Halloween!  Hope you’re enjoying the day!  Let the Holidays Begin!

Hi there.  Feels like I’ve been off the Blog Radar for a really long time!

How are all of you?

I have had quite a struggle lately with my health.  I’m currently on what is becoming a long journey to find out what is bothering my digestive system so much.  It is a difficult and draining path right now as I call my doctors and ask for their input, continue to feel intense yuckiness, see new doctors as quickly as possible, try to live my life, take care of Disability Business, take care of life business, take care of other medical business, try to take care of my MS AND LUPUS, have some fun perhaps, spend time with my husband, Corey and my Cleo Kitty and do what I need to do for mental health and stability.  Exhausting.

It is definitely really hard right now but I have hope that with this big group of medical supporters, I will find answers.  I feel like a coin that can flip any time from “full of hope” on one side to “full of dread” without even a second passing.  Right now it feels like I’ll never get answers but I know it’s because when I have discomfort in my torso, that is all I can even manage to process in my mind.  It is the center of my body, the center of my Being.

And so I’m burned out.  I’m discouraged.  I’m frustrated.  I’m grieving the whole health situation I have found myself in.  I’m also hopeful, I feel loved, I feel very supported by all of you, I feel resolved to get answers and there’s even some faith mixed in there.  I don’t like the other “negative” choices of how to deal, so I’m gonna have to choose to keep on keepin’ on and with any luck I’ll find some answers and start to feel better.

I want my life back.

I AM DETERMINED TO GET IT!

 

 

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Looking For People Who Have Both Multiple Sclerosis and Lupus

Posted on October 15, 2012 by Nahleen

I’m on the Search.

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

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

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

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

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

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

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

That’s what’s been on my mind lately.

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

That seems to be the theme. CONNECT CONNECT CONNECT.

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2 YEARS AND 2 DAYS!

Posted on August 21, 2012 by Nahleen

I have survived 2 years and 2 days with a lupus diagnosis!

Go me!

2 years ago when I was diagnosed, I felt symptoms that had to have been traumatically horrible and unfathomable because I have blocked out those physical sensations. When I look back on those 1st few days with a new label of a lupus diagnosis, I can’t really remember how I felt physically–not really.<em. I just know it was horrible because of how I felt mentally. I know the basic symptoms I had BUT there's a block there and that's OK with me. I'd rather not relive those awful symptoms and to that intensity EVER again. Sure I still feel most of those symptoms and perhaps some more but with changing my outlook about ME, treatment, proactive doctors, and people like you it's less intense.

As hard as it has been to have multiple sclerosis and then to add on lupus, I am truly grateful for my path of recovery. I have trudged and I have struggled and I am losing it these days due to the intense sunshine and heat, BUT my path is crowded and yet more peaceful. It is crowded with so many people who have been there with me and for me through all of it. Words can't describe how touched I am that I am NOT going through this ALONE. It is so easy to isolate with chronic illness AND YET you never let me–even when I might want to.

I often feel overwhelmed by all of the hard work it takes to handle medical business (insurance, bills, doctors, medications…), self care (rest, exercise, healthy eating, meditation, having fun, having a life, socializing, living for me…), a life that is currently on Disability (thank goodness for it but it drives me absolutely crazy–I highly recommend it if you need it BUT I will not sugarcoat it: IT IS A HARD BATTLE TO FIGHT–yet totally worth it), etc.

AND…

I also often feel wonderfully (please don't stop) overwhelmed by all of the love, support, encouragement, positivity, relationships and connecting, the hugs, the smiles, the prayers, the gifts, the willingness to be there for me for what I need. Tears are running down my face right now as I write this because I KNOW you are all here with me. I'm learning to accept it too. That can be hard. I can't do this on my own and it is so hard to ask for help BUT it has all been truly a gift. And to stop and smell the roses and look at the sky are truly wondrous to me. Heck even my PURPLE HAIR has helped me free myself! I DIDN'T HAVE ENOUGH TIME FOR THAT before. I wish I had MADE the time.

And so I leave you with this:

THANK YOU FOR BEING YOU BECAUSE YOU HELP ME BE ME!!

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