Posts Tagged With: hospital

11 Years Ago…

I still grieve.

Or maybe I’m finally grieving.

I don’t know.

I thought I didn’t remember the exact day my life changed forever.

AND THIS MORNING IT HIT ME.

Sounds so hokey to say that. But those are the judges in my head saying that it’s hokey. I don’t think it’s hokey and so what if it is.

It was November 22, 2002. I was 25. I was moving full speed ahead. Sure I had gone through 6 months of extensive testing to try to figure out why the bottom of my feet were constantly tingling. Sure I had gone through many phases of FEAR about what could be wrong with me. Yet, EVERY test I had taken till then had come back inconclusive or all looked good.

So why would my first MRI be any different?

BUT IT WAS. IT WAS DIFFERENT.

I entered that hospital to get the MRI on the evening of November 22, 2002 and left a piece of me behind back there. I never did go back to that same area where I had it done to retrieve that part of myself. Not only was the MRI more terrifying than I expected but the LOOK that Technician gave me when I was FINALLY taken out of that God-awful tube made a part of me vanish in horror. In her eyes, all I could see was DEATH. It’s taken me all these years to find the right words to describe her look. That’s what it was.

DEATH.

I was 25. I wasn’t thinking about the END. I was thinking about the BEGINNING. This was it. I had just been a Production Assistant for a couple of short films, I was going to be an Associate Producer of another film, I was working 2 jobs to make some extra money, my full time job was in Television and I was gonna make it big no matter what it took. I had an awesome kitty and a wonderful boyfriend (who is now my awesome husband) and life was VERY UP. That was the reason I left my life in NH to go to LA right? I was gonna do this.

BRING IT ON.

Hmmm. I didn’t say BRING ON MS. Nope. That’s not what I meant.

That next morning after the MRI I was admitted into the hospital for 3 LONG DAYS of HELL. They thought maybe I had a brain tumor. No, maybe it was some kind of infection in my brain. No maybe perhaps, but probably not, but maybe, I had MS. I felt like I was living in a nightmare. My sister who was here visiting (poor thing–this was her visit. But the timing is not a mistake.)

After that it was a Thanksgiving family reunion that I don’t remember much of at all and RIGHT after that I was diagnosed with multiple sclerosis.

MULTIPLE SCLEROSIS.

Something REALLY was wrong with me.

4 Days after that I had my first FULL BLOWN EXACERBATION. No surprise.

All symptoms I could ever have ever, you name it, happened in my body.

AND…

AN ANXIETY ATTACK.

AND…

A HORRIBLE, MEAN, ABUSIVE NEUROLOGIST WHO SAID IT WAS ALL IN MY HEAD.

AND TOO MANY STEROIDS…

Still don’t know how I survived what I found out later was a major overdose of steroids.

AND MY LIFE AS I KNEW IT WAS OVER.

And yes, my life is getting better. BUT it is not how I pictured it would be. In a lot of ways my life is better than I ever thought it would be. I’m forced to live more in the Present. And the Present can be a wonderful place.

And I still grieve…

I grieve over that life I thought I would have BEFORE that terror-filled MRI night. I grieve more now over it because I guess I’m ready to.

And that’s where I am today. I couldn’t figure out what exactly that dark cloud was that had been following me all week and was almost suffocating me this morning. Every year I seem to block out just what day it was that this all happened over a decade ago.

AND IT HIT TODAY.

GRIEF.

and

GRATITUDE.

Both can exist at the same time.

I never thought I could make it past that night but I have. One day at a time. That’s all I can do. Sometimes it’s one moment at a time. And that’s what I’ll take today. One moment at a time is enough.

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I’M OK

I’ve been reflecting a lot about my Blog post yesterday, “Diagnosis Part 5: MRI”.

It helped so much to write that. I needed to really get that out. I needed to tell the whole world about my experience. It freed me a lot. I felt lighter after I wrote it and I’ve been breathing easier ever since.

And what I’ve become aware of even more today is something so enlightening and positive.

I’M OK.

I, Nahleen Virginia Blake (yes that’s my Middle Name), am OK. Oh my goodness! I’m OK. If you had told me that night of my first MRI that over 10 years from that whole experience I’d say I was OK I’d have pushed you away. I’d have ignored you. I wouldn’t have believed you. I probably would’ve gotten sick to my stomach.

No Way! I was so terrified about my life, about my future, about my body and everything that I had no control over. I “HAD CONTROL” of my life back then…I thought. I was on my path. Full speed ahead! Get out of my way. I’m following my dream. Actually…I’m chasing my dream. It can’t get away. My grip is so tight and I won’t let go. Keep on going and going and going and going. Well, guess what Energizer Bunny? You can’t keep going either no matter what those commercials say. Sorry but you run out of Oomph too!

Throughout these 10 plus years since I have been told by so many people older than me that I am too young to think the way I do. That I am too young to go through what I’ve gone through. That I should be going through all of this illness and crap when I’m older. Well, let me tell you all, I HAVE NO CONTROL AND I NEVER HAVE. I was powerless over what was happening in my body and my mind was bound to change. My life was bound to change! My outlook was bound to change! Change change change! Life is about change!

How could all of that not change?

I couldn’t work 2 jobs anymore. That was crazy to start with. I couldn’t be a Production Assistant for 12 hour days on my precious weekends anymore.  I couldn’t couldn’t with the couldn’ts. Suddenly my life came to a halt.

SORT OF.

I had to rest more.

I’M SORRY. DID I SAY REST?

What is REST? Well, that means I STOP all I’m doing to the best of my ability and sit my butt down. I can lay down on the bed. I get some quiet. I learn how to meditate. If I can’t stop I at least SLOW DOWN. Yes, slower is OK. Really. There are so many ways to rest. Forcing everything to a point of a racing heart is NOT RESTING. Nope. Everything in Fast Forward is not resting.

Actually, my life is usually better than OK but I didn’t know that until 8 years later when I was diagnosed with a second disease of lupus. A…SECOND…DISEASE……..OF…LUPUS….Now THAT ONE KICKED ME OFF MY FEET AND STRAIGHT ONTO MY BUTT and there was no getting up.

No question.

I hit a wall so hard it’s a wonder I even survived and I am NOT EXAGGERATING.

And my choices were simple yet so complicated for someone like me to understand. You see, simple is not simple. It can’t just be that pretty much everything in my life has to STOP AND SLOW DOWN and not just a few things here and there. This affected EVERYTHING.

I HAD TO CHANGE.

MY LIFE HAD TO CHANGE AND FAST.

I FELT I HAD NO CHOICE.

See, I used to say I had no choice. I had to stop working…for now…until further notice…maybe…no really…I still wasn’t feeling up to it months later…symptoms just kept kicking my butt…I needed Tender Loving Care from everyone but especially from ME. I could’ve gone back to work. Right. OK. And run around and been in an environment that was so toxic for me that I would’ve ended up in the hospital the next time. Sounds like a great quality of life.

It was ME. I had to change MY LIFE.

I had to take care of ME.

Why was that so hard? Why IS that so hard?

I know it’s worth it. I know I’m worth it. And it’s a work in progress…It really is about Quality of Life, not Quantity.

But when I focus on TLC and turning the attention of my TLC to me my life gets better. My life looks different, feels different, and even smells different. There are flowers to smell and see everywhere here in LA. There are trees with leaves that blow in the breeze. That is one of the most lovely sounds I have ever heard. There are clouds. Oh I have always loved clouds ever since I was a little kid. Give me a cloud to look at and I am thrilled. Everything else goes away. There is an ocean that keeps me Present when I can see it. Even driving by it changes my mood if I can see it. I am in the moment. Do you know how beautiful the moment is? Have you been able to feel your breath as you look at the vastness and the colors of the ocean as the sky and the light of the sun reflect on the ocean? Have you watched a seagull float along in the sea breeze? Even watching other people in the water puts a smile on my face.

Smiling. I do that so much more than I used to. I used to be told all the time to smile when I was in my 20s before the MS diagnosis. I had no idea I wasn’t smiling. I was so dang busy pushing and pulling and forcing and going that I forgot to smile. I had a frown on my face I was so intense. It’s a wonder I had any friends, family, work colleagues or anyone else who wanted to be in my life.

But somewhere along the way I forgot me. I still do sometimes and I am constantly working on bringing ME back.

And bringing my focus back to me, I see the shining emerald green glimpse of hummingbird. I see the butterfly off in the distance. I find myself sitting in my car listening to my favorite song and not getting out until I’ve finished belting it out to myself. And back to smiling because I find it so powerful. Smiling at others? Smiling at others and watching them smile back. It is so rare now for me not to connect with others with a smile. I have met some of the best people in the grocery store. We are all just people living our lives trying to get by. I have had lovely conversations in hospital building elevators with others about colors and clothing and my Muppet bag/purse.

I have sat next to some wonderful people while sitting in doctor waiting rooms. See doctor waiting rooms are tricky for me. I still can’t stand going to the doctor. In fact, I think in some ways it’s worse now because I have so much chronic illness doctor’s office visit fatigue if that makes any sense. I am sooooo done seeing so many doctors even though the appointments are currently usually further apart. Usually. But those waiting rooms can be so grueling and talking to others helps. If I don’t I feel closed off and not grounded. I find myself more nervous about the appointment than I was before. I find myself noticing that so many people are not feeling well, that they’re older and looking at me wondering why I’m there at whatever Specialist Doctor I happen to be at. It’s rough.

I have gotten to know the office staff at almost every doctor. I now have at least 2 friends at the Pharmacy I go to and I’ve had coffee with one of them. They are people too. Great gals actually. I have learned that it’s really not a problem usually to stand in line at a store. Why not look around? Why not watch a little girl or boy with their Mom and see what they see as they look around? Getting annoyed and irritated is probably going to make me feel worse. Life does not have to be lived so fast.

And what about finding myself through writing? I think I’ve always been a writer. I have written off and on all my life. This Blog has helped me get through what was a huge writer’s block for too many years. I need to write. It is part of my Being. Even if I write the hardest and deepest thoughts and words I still come out of it smiling. I wrote! I expressed myself!

And then there’s meditation, guided imagery, spiritual support groups, coffee groups, texts with friends, Facebook, Twitter, the online community in general, the longer conversations I get to have with people on the phone if I feel up to it (this one is still hard for me because being social is one of my favorite things but it also tires me out very quickly and as I get better I am more able to talk and maybe even visit but it’s still a one day at a time thing), the exploring of neighborhoods as I walk every day (by the way it’s been over 450 days since I started taking a walk every day!) I never know where I’ll end up. I have found the greatest local businesses that way. Some of the best coffee shops are in Santa Monica. I wouldn’t have known that before.

And sitting on my balcony especially at night is one of my favoritest things to do ever. I sit back in my lounge chair and look at the sky, look at my iPad (feel so fortunate and lucky to have such a supportive husband who bought me an iPad even before my lupus diagnosis and it has changed my life–the online world is a much more accessible place because sitting at the computer with the big screen can be hard for me for so many reasons), talk to my plants, and I can even have plants that I love and adore! And let me tell you, they respond so much better when I talk to them and give them love.

I have found faith and hope during these slower times. During these quiet times it has not all been fabulous. As they say every rose has its thorns and that is so true. There is beauty in life everywhere. There is also struggling, and excruciating feelings, and trudging, and crying, and anger, and memories, and reliving traumas, and temper tantrums, and grieving, and missing the old days when I thought my life was something else, and when I was younger before my MS diagnosis, and wanting to punch things and having very very hard times and hard days. I find I’m also having an identity crisis. Who am I? Who is Nahleen with MS and lupus? Will I ever work again? What will I do? Which idea am I going to pursue? Where is my life leading? Is this my life? I can’t live my life as someone who is identified only as my illnesses but it is a major challenge to break away from that when my life is lived in doctor’s offices talking about everything that’s still wrong with me, even talking about those few things that are getting better is still on the subject, just being there reminds me too much about my reality, having to prove my Disability to other entities who are trying to not help me, dealing with insurance issues, reliving the past for new doctors, taking over 4 hours to get going before I feel human in the morning, taking my medications, keeping up with my medications, keeping track of symptoms and the severity of them and watching for patterns, exercising so I can keep functioning and I could go on. Please let my life be more than that.

BUT YOU KNOW WHAT?

I’M OK.

I’m better than I was 10 years ago even before my MS diagnosis. I see the world in front of me more. I see the world. I am in the world. I am not on the outside looking in. I am NOT living the life I want to live on a whole just yet but isn’t that normal? I want to live a life WITHOUT MS and lupus but that is a lot to ask right now and to be honest it pisses me off and I can feel the rage right now even as I write this. But right now I’m in a better wave. I don’t know how long it will last or if it’s the new norm. Life is always happening and it is always in session. I have learned that time and time again. And I don’t know how I’m going to feel the next moment from when I write this sentence but for now I’ll take the feeling that life is a bit easier. How cool is that? I’m a bit more at ease. What a gift.

But it is not a life to be rushed through. Time goes by too fast. I was a tied up ball of knots rushing around plowing my way to the next goal in my mid-20s thinking I would someday rule the world, but it was never good enough. And in the past few days, life is good enough. Sure, I want more money, I want a bigger place to live in, I want that dent out of my car that someone so nicely put in there at a time I wasn’t around to see it happen, I want to be thinner, I want to feel so good that I am frolicking and skipping down the street and I don’t ever want bad things or hard things ever to happen again.

But that’s not real.

And I’M OK.

And the best part is there are parts of my life that are so very happy. I am happy with my husband and my Cleo Kitty. Corey keeps me laughing and on my toes. He is so incredibly supportive and always by my side. We are the best team I know. Cleo Kitty and I are best friends. We have been there for each other during each of our health problems for the past 3 years. She cuddles and plays and needs to eat and she demands her pets.

I also have a roof over my head, wonderful people in my life who don’t let me isolate even for one minute and they are from all parts of my life, 2 cars that run well, air conditioning that usually works, clothes to wear, food to eat, a bed to sleep on even if the mattress is so old there are hills and valleys in it and the list is endless.

I have a full life. A pretty darn good life. It can be very hard. And sometimes it can be easy but those times seem rare. Perhaps that will change. I don’t know. What I do know is that I breathe easier. I’m not nearly as tense. I feel much better than I did last year in July 2012 (and it doesn’t mean I am all better but I will take whatever I can get), I smile and giggle more than I frown and grumble. My bad days aren’t nearly as bad and intense and I recover quicker. And this is all just for today.

That is all I have. That is all WE have.

And that is OK.

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Diagnosis Part 5: MRI

I looked back on the last time I wrote a part of the “Diagnosis” story of my life and saw that it was on 05/17/12. It has been over a year since I wrote about the story of my diagnosis. That is how painful and hard my story is and how excruciating this next chapter is.  I had to be so ready to write it that I was bursting at the seams! Lately I have found it very challenging to come up with the words. I am a writer with too many words and no words. I truly believe there are not enough words in the English language to describe so much of what I’ve been through.

BUT IT’S TIME. IT’S TIME TO GET IT OUT. IT’S TIME TO TAKE ANOTHER STEP TO BE FREE OF THE TRAUMA.

As you can tell from the title, my focus will be the first MRI that changed my life. THE MRI.

Here goes. I know you’re all here with me so I’m going to jump in. I can already feel the adrenaline of anxiety rushing throughout my body. The emotions are rising to the top. Those really really hard emotions. I can do this.

It’s November 2002. I’m 25 at what I believe is supposed to have been the Prime of my life. Or at least I “believed” it was supposed to be. I gotta admit, if that year was the Prime of my life then I’d have nothing to hope for. That year my family had decided to have a family reunion of sorts with my Mother’s side of the family for Thanksgiving. We were all going to meet at my Grandpa’s up north in Monterey, CA and it was going to be a grand ole time! My sister had planned on visiting me in LA for the first time the week before Thanksgiving and we were supposed to hang out and cause some trouble before the family shenanigans started.

Looking back I’m not sure what I was thinking when I scheduled my first MRI to be at night on the first night my sister was visiting. I mean, I know why I scheduled it at night. I had to work during the day. My sister and I met at a small mall for lunch and she was going to hang out for awhile before I could get out of work. I was scared that day but on top of the world. I can remember feeling so proud and so “up”. My sister was visiting MY WORLD. I was going to show her MY WORLD. I had seen HER WORLD before in the past but this was mine. She’s older and I was so proud to show her LA, to show her I was “making it” out here. Still not sure what “making it” means but I digress. I can remember walking down the sidewalk at this mall and looking for her and thinking it was a pretty day and oh by the way, I had lost almost 50 pounds so I couldn’t wait for her to see that too. Weight has always been a challenge for all of us in the family so the idea that I could even lose 50 pounds was AMAZING!

Anyway, we met up, had lunch, I took her on a tour of my workplace and I was so so proud to do that. Look Lori, I work at a television station! I’m really starting to do what I came out here to do! Those were the thoughts in my head. Isn’t it weird how we can bring ourselves back to our past mindsets and know they’re familiar but almost not recognize them? That was over 10 years ago. I have been through so much since then. My mind even feels different.

I don’t remember much until I showed up at the hospital in Burbank with Corey and Lori and had to fill out the paperwork. Actually, much of that is a blur. I was so nervous. I’m sure I had decided to just have the MRI then because I had to wait weeks for my HMO at the time to process all the red tape to even approve an MRI for me so I just wanted to get it over with. Plus I had had sooooo many medical tests by then that had come up with NOTHING that I might as well get this done. If I didn’t do it then then I’d have to wait till after Thanksgiving. On a side thought, I wonder if that would’ve changed much of the course of events?

I then remember being called by a lady to “Come on in and we’ll get you started” and she lead me through white hallways. Please tell me, why must all hospital hallways be white or yellow? Why can’t they be calming colors or fun colors? And I know they’re supposed to be sterile but some decoration of some sort would be nice. And about the fluorescent lights…PLEASE GET RID OF THEM!

So the next thing I know I’m being sat down at a small table to the side in the middle of the hallway it feels like (at this point I was so not used to being in a medical fishbowl and everything felt like it had to be a secret and why were we sitting in public–even though no one was really walking by or anything) and this nice lady with long dark hair (blurred out everything else) sat me down, pulled out a pile of paperwork and a pen and proceeded to ask me questions I could not answer. That was the first day/night I ever heard about fibromyalgia. The who the what now? That was the first day/night I ever heard I could have symptoms of fatigue and that they were real. That was the first time ANYONE had ever asked me if I felt any real pain and where and did I have any other autoimmune diseases? What are those? Why was she bringing them up to me? That was the first time for so many things. I think I was a medical virgin or something. It was all so surreal.

Back then, the MRI machines (this was only 10 years ago) were very different than they are now. They were long tubes and they were dark and they were skinny. Here’s my thing. I was so much skinnier and yet I felt cramped in there. How could anyone bigger than me fit in there at all? I don’t remember much of the process just yet but I know I was hardly wearing anything. I had to take off all metal, all jewelry, my bra with the metal underwire, my pants with even a hint of a metal button (don’t think the button was metal actually). To be honest I can distinctly tell you what I was wearing that day. So weird. So much of it is a blur but what I was wearing is clear as a bell still to me. I was wearing my favorite navy blue long sleeve button down shirt that I had just bought in a size smaller due to my weight loss and I was so proud of me and of it. I was also wearing khakis that I don’t think I’d be wearing now. Not that I’d even fit in these clothes now but still. At the time I was wearing contacts so I didn’t have to worry about not seeing and feeling vulnerable that way and I had to wear a very thin white hospital gown. I felt so vulnerable and I also knew I was claustrophobic but I didn’t know how much because luckily I had never been put in that situation before.

These days I have had much better experiences with MRIs. I usually have one a year. I believe I’ve had at least 15 MRIs but if I count any that have been done in a row in the same session (meaning 4 in a row with all kinds of machinery and equipment locking me down and in and not being able to move for OVER 2 HOURS) I’d say it’s close to 20 by now. Each time they’re different. Fortunately, the technology is so much better and the MRIs I have had have been shorter, a bit wider, some of them have music and I don’t have to take off much of anything. The ONLY thing I usually have to take off is my bra still but that’s it. Why? Because they are usually only interested in my brain to see where lesions are for MS. Why did I have 4 in a row once? Well I was at USC where they have state of the art equipment and my MS Specialist Neurologist at the time wanted a whole picture of me. The technicians usually ask me if I want to take a mood enhancer drug of some sort to help me not care about the experience and I have told them No. I like being with it afterwards. Then again, if I EVER have to do such extensive MRI tests AGAIN that make me stay in one position for 2 hours then I will have to take a drug. I WILL NOT DO THAT AGAIN COMPLETELY CONSCIOUS. I was in so much pain from not moving and I was told that if I moved even a little bit then they’d have to start over. Plus it can be extremely hard to get my head out of the “tunnel mode” and back into the big wide world with no tubes enclosing me. Oh and I have had an Open MRI before but to me it was worse because there’s no tube BUT it’s like they put you inside a sandwich of a top and bottom of a machine and you can see out the sides but it’s not like you can move your head to see them and all I kept thinking about was how it was going to crush me or the machine would eat me or something. But I digress.

You know, A LOT of people knew what was going on with me at that point and a bunch of them had had MRIs before and they all had different ideas of what they were like and some told me that they were awful and some told me that they were easy and so on…However I will tell you this, if you have never had an MRI before I will not tell you what it’s like for you. I will only tell you what it was like for me if you ask. I will however tell you that I’m sorry you have to go through that and wish you all the best. My experience was different than that of anyone else who told me what their experience was like. In fact it was so unique and traumatic that it’s so hard getting over it still which is why it’s so important for me to share with all of you what happened and to get it out.

Anyway, when the paperwork was finally done and I already was so nervous my heart must’ve been beating out of my chest at that point and I was in the paper thin white gown, I was lead into the room with the MRI. I remember the room being a yucky yellow and I saw this big machine and a little circular opening into darkness was there. I knew right away this was the MRI. It’s fight or flight right? My head was running away so fast yet my body stayed put. I’m sure I tensed up all over the place. I’m sure my breathing was labored. But I toughed it out. I could do this. Oh yeah and the room was cold because the machine could overheat fast. Plus it was already so so loud in there just from the monster machine. So they had me lay down on the thin flat cold table and locked my head in telling me not to move it. They put earplugs in my ears or headphones on (don’t remember), asked me if I was OK–UM does anyone see the logic in this? I still have technicians doing that with me. They block my ears and lock my head in so I can’t turn and can barely interact and then they ask if I’m OK. WHAT????? Did you say something? My instinct is to move my head. And then panic, oh wait I can’t. GEEZUM! Someone’s gotta tell them that makes no sense. Perhaps walking us through some hand signs would be helpful or something. Eye contact with me directly over where my head is locked in would be good too.

The next thing I know the table starts moving and I’m sent into the dark tube. The tube I could barely fit in. And they kept sending me into the darkness. Oh thank goodness the MRI machines I go in now are white and have a lot of light. I kept trying to remember what my Rheumatologist had told me. Look straight up and you’ll see a mirror that reflects the window to the room where the technicians are. Look at them if you need to. She reminded me that I’m not stuck in there. I could slide out if I wanted to. However all I could picture was panicking and trying to sit up and knocking myself out because I’d hit my head on the head cage or the tube or both. She told me I could wiggle my fingers if I crossed them on my stomach (really not too comfortable for all that time) and I could see them in the mirror so I’d be aware that I hadn’t detached from my body somehow. However, I was still sooooo scared to move. I didn’t want to have to do this over again. I just wanted it done with.

Meanwhile I’m aware that Corey and Lori are in the Waiting Room. I think it was in that dark long squished tube where I got a glimpse of how vulnerable I really was. I was locked in. I was taken away from my people. Yes I had watched too many movies, TV shows and read too many books but I’m not convinced “weird” stuff doesn’t happen. How do I know? I started thinking about how they were looking at my brain. I started thinking about how I had a brain. Hey, I really had a brain! What were Corey and Lori doing? Wow, this machine is really loud even with my ears blocked. Oh my goodness I have an itch on my nose. How much can I wiggle my fingers? Can I move my feet at all? Doesn’t any movement of my body move the rest of it? As I looked in the mirror into the other room, I wondered, how I had not seen that room when I came in? Where was it? What were they seeing? Why were there so many people in the room? Dang it! Breathe! Oh my goodness I’m in a dark long tube! How long has it been? Why aren’t they talking to me? Can they please not talk to me? Can they please not tell me how much longer? Wait why is it so silent? What do the sounds mean? What does my brain look like? Oh my goodness this tube is long. I hope there’s not a monster just waiting to grab my head in the part of the tube I didn’t enter. Why am I so far in? Didn’t Dr. S say I wouldn’t be pulled all the way in? Uh oh. Why the silence? That’s a long silence. I can do this.  Really I can. Uh huh. I got this. Soon enough it’ll be over and I’ll be on my way and Lori and I can have our visit. Why is it taking so long? Or has it been long? I’m feeling cramped. I’m so hungry! UM DID THEY FORGET ME? Why does this machine vibrate too? No one told me about that part? WHAT IF THERE IS SOMETHING REALLY WRONG WITH ME? WHAT IF I HAVE MS? The mind loop was endless and I worked so hard not to get worked up that I was so stuck in my head. Did I have a body anymore?

So then I feel the table start sliding me out. I must be done. OK. I can do this. Phew! I’m done! Wait, that long haired lady is back and she has a serious look on her face. Does she have a serious look on her face? What is she doing? Shouldn’t she be pulling me out? I’ll ask her. Where’s my voice? Why can’t I say anything? Did I forget how to talk? Can I move? AM I DONE? What is she doing with that needle? WHAT’S HAPPENING?! No. No more needles. I’ve had enough needles and blood taken from me in the past 6 months. (Little did I know it was only the BEGINNING…).

I really don’t know if she told me she was putting “Contrast/Dye” into my veins. I just remember thinking that I felt like a specimen and some kind of experiment. I must be a part of a horror movie right now. Wait! I don’t remember being told I’d have this done. Why is it happening? She asked me what arm was best for veins and I told her I wasn’t sure. So she just tried. (I now know it’s my left arm just on the outside. Otherwise, my veins hide and don’t like being bothered. They’re busy.) OW! WHAT THE HELL WAS THAT?! The shooting pain was abominable. I was strapped down. I think I jerked and she tried to hold me down and apologized and said she had missed it and would have to try again. I asked her what she was doing anyway I think finally and she said she thinks they might have seen something (ummmm not a good idea to tell me this and aren’t they supposed to keep their mouths shut?) and so they are putting ink in my veins to find out.

FREAK OUT BUT STAY STILL!

STAY STILL?! STAY STILL?!

OH MY GOD! WHAT’S WRONG WITH ME?! SOMETHING WRONG? WHAT DO I DO? I can’t have something wrong with me. My sister’s here. I’m supposed to be tough for her. I’m not supposed to show any weakness. And then she moved to the other arm. Yes, I’m still locked in. I have a ridiculous force of will to stay in one place because honestly my head had me sprinting out of there so fast and yelling and screaming down the hallways. GET ME OUT OF THERE!

And something in my head told me to try to calm down. Let’s just get this over with. It may be nothing. They had told me that before during this journey of finding out what’s wrong with me. They thought they saw something and I’d freak and worry and lose my mind and then I’d found out it was nothing or that oh so fun medical word, “inconclusive”. Oh the things I could do with that word…

So she tries my other arm and she just couldn’t get the vein. She didn’t just stab me this time but squeezed my arm so tight and had me clenching fists and FINALLY I think she got it. Meanwhile, the other arm was still screaming. She had gotten the ink in my muscle. Who knows what that did to me. I still wonder. Before she sent my head into that dark tube she asked me if I had anyone there with me  in the Waiting Room and I told her yes and who they were. She said she’d tell them it was taking longer than expected.

So she says, OK, this shouldn’t take too much longer and she sent me back into that dark tube abyss…to be in my own head…to freak out…to be so horrified and think I was living in a nightmare…Did anyone really tell Corey and Lori why it was taking so long? What did they say? Did they know more than me? A part of me knew, I KNEW, that something was really wrong with me. What it was was terrifying me. The possibilities were endless. Would I find out right away? Would I have to wait forever to find out? What now? This should be done with me! I want out! Get me out of here! I was clearly wound up with so much stress I could barely stand it. I don’t know how I did actually. I guess a survival instinct took over. I was so worried about what Corey and Lori were thinking and that this shouldn’t have had to happen while she was here and now what and my head just kept exploding with crazy thoughts.

FINALLY…

THE MRI MACHINE STOPPED…

AND I WAITED FOR-WHAT SEEMED LIKE-EVER FOR SOMEONE TO PULL ME OUT OF THAT TUBE.

I had tensed up so much I could hardly move. I was so in my head I could barely function. This time the person taking me out was a blonde older woman with curly hair and glasses and she looked directly over me where my head was and I’ll never forget her eyes and the way they looked at me and kept staring at me as she unhooked my head and loosened it all up around me.

SHE LOOKED AT ME AS IF I WAS GOING TO DIE.

DIE.

I still have those eyes of her’s so stuck in my memory that I don’t think they’ll ever come out. So as I’m still laying there and I now have my ears clear, she asks me all kinds of questions. How am I feeling? What are my symptoms? When did they start? Do I have anyone here with me now? And I can hardly talk. I try to sit up really quick and I almost fall off the table I’m so dizzy and out of it. I’m so traumatized. I’m 25. I’m invincible remember?

I also was incredibly tense with MS and didn’t know and probably lupus and didn’t know that for so many more years after that that it’s a wonder I didn’t have a major attack/exacerbation/flare right there on the table or in that room. She kept those “You are going to DIE eyes on me the whole time.” I felt violated and so alone. I just wanted to get out of there. And in that same tone with those eyes, she said, “Now I need you to call your doctor right away in the morning. It’s too late now because you’ve been in here so long.”–Oh it wasn’t just me thinking it was long? It REALLY was that long? Poor Corey and Lori! I was so used to trying to please everyone and entertain everyone that I couldn’t be anything but that strong person. How was I going to show myself? I didn’t even know what they had said to them. They must be so worried.

So I tried to sit up and that wasn’t happening very well. I almost fell off the table. I had “freaked out dark tunnel scared to death” head. Horrifying. Why didn’t I wake up yet? Worst nightmare ever. Especially those “death” eyes of her’s. She caught me as I teetered to the side and held me upright and still looked at me as if I was going to DIE right there on her. I wish I could be exaggerating here about how she was looking at me but to this day with everything else I’ve been through, I have yet to see “THOSE DEATH EYES” on anyone else. So she told me to just sit there for a bit and she’d go out into the Waiting Room and tell Corey and Lori I was done and coming out soon. She came back in and asked me if I was OK getting up.

YES! GET ME OUT OF HERE NOW!

And I jumped up. Ooops. I stumbled and almost fell. Get me away from this woman please! She’s scaring me! Where was my voice? Did I even know how to talk? I had hidden me away somewhere deep into my brain. I was protecting me. I think I was a shell at that point. So upon seeing that I’m stumbling and clearly my legs are jello she tells me I’m going to have to ride in a wheelchair out into the Waiting Room and she’d be back.

WHAT?! A WHEELCHAIR?! I’M STRONG! I CAN WALK! I’M OK! I HAVE TO SHOW EVERYONE I’M OK! I CAN’T BE WEAK! PLEASE! NO!

I think I mumbled to please not do that but if she heard me she ignored me. All the while those “death” eyes on me as much as possible. I’m surprised she left me alone at all.

So she helped me a little too much into the wheelchair. By that time I had more of my bearings and was entering my body a little bit more from my hiding place in my head and I gave her a look like, “I GOT IT!” and forced myself into that chair. And then horrified, I was wheeled into the very bright Waiting Room where I saw Corey and Lori. As she’s rolling me she’s on a constant loop of telling me to call my doctor and not to ignore it and it was very important and when I finally found a voice to ask her what was wrong she told me she couldn’t tell me but that it was so very important and oh my goodness.

I was mortified that Corey and Lori would see me in a wheelchair because I mean really, I had only had an MRI. I was fine. I could walk. What the heck? I couldn’t look weak. I got this. Really. So still struggling to find my words, I try to get up out of the wheelchair ASAP and that blonde woman was STILL THERE! GO AWAY! LEAVE ME ALONE! DON’T TALK TO THEM! I HEARD YOU! I’M RIGHT HERE!

“Please make sure you talk to her doctor tomorrow OK. It’s so very important. You really need to do that. You can’t waste any time.”–as if I’m not there and I’m not understanding what she means and she gave them those same “death” eyes.

HERE’S MY QUESTION  TO HER OVER 10 YEARS LATER:

WHY DID SHE NOT MAKE SURE SOMEONE CALLED MY DOCTOR THAT NIGHT NO MATTER WHAT IF IT WAS SUCH AN EMERGENCY TO HER?! WHAT AM I MISSING?!

So she walks away and Corey and Lori are looking at me like I need to be treated with gentle hands. That’s what I felt like. Now I know they were looking at me like they were concerned and worried and they were allowed to be. They got those same EYES from that woman that I did about me. Scary! So as I start bawling and Corey’s telling me it’s OK and I can stay in the wheelchair as long as I need to and ALL I WANT TO DO IS GET THE HELL OUT OF THAT WHEELCHAIR! I CAN WALK! I CAN GET UP ON MY OWN! LET ME!

I still had a bit of a hard time talking especially with the crying and finally he understood that I wanted to get OUT OF THAT FRIGGIN’ WHEELCHAIR and into a regular chair and I wanted to throw that wheelchair as far away from me as possible. Somehow FINALLY I found my way into a regular chair and I bawled and bawled. I think I left a piece of me in that MRI room. I lost a lot of innocence that day. I found out I was mortal. I found out I wasn’t invincible.

I was human.

HUMAN.

We sat in that Waiting Room for a long time while I regathered myself a little bit more. When I look back on that night I think about how Lori was there and Corey was there. I wasn’t alone. That was no mistake. That was why I had scheduled the MRI for that night. I needed my Sister. Corey needed my Sister too I think. My Sister and I were still struggling with our relationship then and I had to be me with her the next few days. ME. And that was OK.

And one side note: I’m not surprised I couldn’t stand that wheelchair. It turns out I get very dizzy in them or I used to even up to a year and a half ago. I don’t know about now and I’m very fortunate not to know. I’m so grateful I can still walk. It’s weird. I’m OK with others in wheelchairs (well as OK as I can be considering these people are having a hard time in some way) but I felt like I couldn’t be in one. However, I now know that it’s hospital protocol. The last thing they want is me falling on their watch because uh oh I might sue. Oh poor things…

That’s it for now. I’m glad I got it out. As you can tell, I didn’t DIE. I haven’t DIED  yet. I don’t plan on dying anytime soon. I’m too busy living.

And what happened after that?

ALL HELL BROKE LOOSE! So much so that I need to recover from this post in order to write another one. I hope it doesn’t take me over a year because I think it’s ready to come out and I can tell already that I’m more healed from finally writing this.

Therapists have now told me that I am still suffering a bit from PTSD or Post Traumatic Stress Disorder from just that one experience and that there are separate episodes to work through too all connected with this one. I believe it. I wish there had been enough sensitivity at the time to really see what I was going through. I feel it in my heart that we all need to see Therapists at some point in our lives but when going through such trauma as medical tests and the limbo part before diagnosis and then the diagnosis of the Chronic Illness along with maintenance care throughout–we should be REQUIRED to see a Therapist. To not talk about it is poison and can only make our health worse.

Medical Journey Trauma (I think I just came up with a new term) is REAL. And we all deserve to talk about it, process it and move on with our lives.

Oh and how do I feel about MRIs these days????

THEY STILL SUCK!

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

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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Reflection: It Started With An Emergency Room Sign

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.

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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.

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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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