Posts Tagged With: walk

“Should” Is a Dangerous Word

I don’t know about you but I have a lot of chatter going on in my head quite often. I’ve learned and been able to quiet it down a bit more but it’s amazing how loud it can get in there. My goodness. The things I say to myself. I used to be really mean to me and abusive and I realized that I didn’t like those bruises anymore, that I didn’t deserve them, so I have gotten in the practice of TRYING to take words and phrases out of my head that do me more harm than good.

“SHOULD.”

That word needs to be considered what is called a “bad” word. How often do I find myself “Should be” with the “Should be” because “Should be” is “Should be” and back and forth. It’s awful really. I set myself up on this pedestal and the expectations start. I expect more of myself than others expect of me. For goodness sakes. I mean I have multiple sclerosis and lupus and if I count what’s been happening the past few days, I’m also dealing with a sinus infection and have been sick from that.

ISN’T THAT ENOUGH?

Why does “should” even come into my Being. Why do I even let it in? I try so hard to take it out of my vocabulary. In fact, even writing this, I find myself wanting to write the word “should” in a sentence over and over again. But it always gets me into trouble.

If I act on the “Should Be”s then I am only going to get tense and stressed out if and when I can’t follow through. This became very clear to me again this evening when after a long day of crunching numbers, some rest, taking medications, taking care of my sickies, taking care of my Cleo Kitty, taking a lovely walk in the fresh cool air as the sun set, spending time with Corey and just living my life I found myself playing the “Should be” game.

ONLY IT ISN’T A GAME.

It’s always more serious and it is never fun. It says I’m not enough. It says that I’m not doing enough. I’m not good enough.

Well I have news for me.

THAT’S NOT TRUE. I AM ENOUGH.

SO NO MORE “SHOULD”.

And when I say it again to myself I gotta try not to be too hard myself about it and just try to stop myself and either reword it, trust that all is as it should be and/or tell those words in my head to go away. That they are no longer welcome.

As I said before, I’m getting better at it, at keeping the “Should”s away but it is very hard.

Since I didn’t act much on the “Should be”s today I am relieved to say that I am a bit better from the sickies. I’m also feeling a bit loopy and strange from the antibiotics and the mucinex but I’m not feeling sicker and more miserable so that is a plus.

Progress is a good thing.

I think I’ll write to the people who write the updated dictionary every year or however often they update it and tell them to take the word “should” out. What I do know is that in the Book of Nahleenisms, “should” is not included. In fact, the word no longer exists…

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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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Doctors: Please Take ME Into Consideration

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

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

Male/Female: I’ll let you guess.

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

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

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

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

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

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

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

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

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

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

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

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

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

Where I’m From: Kingston, NH

Where I Live Now: Los Angeles, CA

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

How Old Are They?: None of your business.

Siblings?: Yes. An older sister.

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

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

Insurance?: Yes. What if I said no?

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

Primary Insurance?: Ummm…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

WHAT KIND OF A FORM IS THIS?

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

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

I AM NAHLEEN.

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

BUT PLEASE TAKE ME INTO CONSIDERATION.

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

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

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

THANK YOU.

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DRUM ROLL PLEASE!!! I HAVE TAKEN A WALK 365 DAYS IN A ROW!

YES THAT’S RIGHT FOLKS! TIME TO CELEBRATE! I HAVE TAKEN A WALK EVERY DAY FOR A FULL YEAR!

YES, A FULL YEAR!

I AM WRITING IN ALL CAPS BECAUSE IT’S WORTH IT! I’M SO EXCITED!

I JUST COULDN’T HIDE IT!

And no I will not break out into a Pointer Sisters song even though I’m tempted to.

I HAD TO SHARE THIS WITH YOU ALL!

TIME TO CELEBRATE!

AND USE EXCLAMATION POINTS!

YAY!

!!!!!!!!!!!!!!!

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175th Blog Post!: Doing My Best to Focus On the Positive

175 Blog posts I’ve written!!!!!

WOW!

I am blown away that I keep on writing.  It’s been helping me so much.  You’ve been helping me so much.  All of you who Follow me, stop on by to read a few posts, comment on my Blog, email me personally (I know I still owe some of you responses) and who support me help me stay positive.

I was told by my Chiropractor last week that I needed to start adding EVEN MORE positive thoughts, elements, stuff, things–whatever it is for me to be positive–at least twice more a week.  He told me how some of his patients have done that.  As he’s been treating me, some emotions have been coming up like FEAR, anger and just being really frustrated.  Some of the emotions have been good too.  But in order to cushion the impact of the hard emotions (trying not to say negative because perhaps IT REALLY ISN’T NEGATIVE TO HAVE THESE HARD EMOTIONS), he’s highly suggested I add more “up” things to my life.

So yesterday while I was getting my apartment cleaned (one of the best things I have ever decided to let SOMEONE ELSE DO because there’s no way it would get done any other way), I found myself wandering a mall for awhile before sitting down, eating lunch and hanging out.

Here’s what I found in a store:

I LOVE THESE “KEEP CALM” SAYINGS…and this one FITS ME PERFECTLY!

HOW AWESOME IS THIS?!  I mean it is SOOOOO ME!  It’s a hue of purple, it’s a “Keep Calm” saying, it says “Sparkle” and I love sparkly things, and it’s on a plaque thingie that I can put up on my wall to remind me to keep calm and sparkle.  It really helps me to remember that it’s all gonna be OK and I can get through anything because if I can deal with having MS and lupus I can deal with a lot of other crap…EVEN IF IT FEELS LIKE I JUST CAN’T TAKE ANYMORE…and believe me it feels like that often.

So this was one of my first attempts at finding more positive things to focus on.  Today I had PLENTY to get my nerves all in an uproar and then I saw that in my bedroom sitting on my bookshelf at eye level and it reminded me to BREATHE and remember what’s more important.

MY LIGHT FROM WITHIN IS MORE IMPORTANT.

It’s not this other crapola that keeps getting in my way.

I’M WHAT MATTERS…

So after dealing with some tough stuff, I made sure to go walk on the treadmill in the “new” (I say it in quotes because it’s been in the apartment building now for probably a year but it’s “new” to me) for a bit and then head up to the sun deck, look at the sky and the world around me and remember what really matters.  It’s also incredibly humbling to see that I am a little thing compared to the rest of the world.  My problems aren’t AS BIG as the world so it helps to put them in perspective.

And then to think I’m well on my way to 200 BLOG POSTS!

SO COOL!

THANK YOU THANK YOU THANK YOU for being a part of my life.

I can’t wait to see what else is in store…well maybe I can…but to know I’m not alone helps a lot!

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325 DAYS I’VE BEEN GRATEFUL TO TAKE A WALK

-GRATEFUL to be able to move my legs.

-GRATEFUL to be able to stand up.

-GRATEFUL to be able to put one foot in front of the other.

-GRATEFUL to still be able to walk on my own with no assistive device.

-GRATEFUL to have taken a walk 325 days in a row as of TODAY!!!

Ten years ago today if you had asked me if I thought with multiple sclerosis I’d be able to walk today, I would’ve been afraid to even think of an answer. It was way too far ahead to even comprehend. Yet I’ve lived my life since my diagnosis of MS in 2002 as if one day I might not be able to walk…or I might not be able to walk as well…or I’d have an exacerbation of symptoms and I’d lose movement in my legs…or I’d be using a cane…or I’d have to use a walker…or I’d have to use a wheelchair…or that the MS would progress making it harder and harder to move my body all over.

Then there’s lupus that just had to make its way into the picture because I didn’t have enough to think about and that can also affect my walking. The joints can get very stiff, swollen and in pain and I hobble around sometimes. The fatigue with both can drive me crazy.

I know people with MS who have a hard time with their legs and are in need of assistive devices. I know people with MS who used to be in a wheelchair but aren’t now. I know people with MS who don’t have any problem walking at all. I am getting to know people with lupus who have similar issues. I myself have a problem with balance at times, I get the foot drop, my feet can give way under me and I can fall (hasn’t happen in awhile), I trip quite a bit, I’m clumsy, I have stiffness, pain and spasticity in my muscles in my legs that come and go. I have ankles that like to roll and that’s not necessarily from lupus. That can just happen. I can often feel like my legs just aren’t strong enough to go down hills so I’ll ask Corey for his arm just so I can feel more stable and not as wobbly. (That hasn’t happened as much since I’ve been walking every day.)

So EVERY DAY in the beginning of all of this crap, I used to wake up in FEAR that my body or at least some part of my body would not be able to move.

EVERY.

DAY.

Then as time has passed I’ve found myself often taking it for granted that I can even walk at all. That I get a chance to walk on my own two feet and take a stroll EVERY DAY is a miracle.

EVERY.

DAY.

I am blessed with the chance to STILL get up every day and be able to move my legs enough to WALK even for 5 minutes. That’s all it takes to take a walk. The POINT IS TO MOVE MY LEGS. I get to walk on my own still. I don’t know if that will ever change and I’ll admit I still have that FEAR cloud lingering over me like a veil it seems but it is just there because ANYTHING CAN HAPPEN AT ANY TIME TO ANYONE BUT NOW WITH MS AND LUPUS I HAVE AN INCREASED CHANCE OF VERY “UNFRIENDLY” (a friend used this word about her physical symptoms and I hope she doesn’t mind that I stole it), symptoms occurring that can be debilitating to my body and not only can they be debilitating BUT I will have NO IDEA whether I’ll be able to get that part of me back or not. AND I HAVE NO IDEA OR WHEN THE NEXT ATTACK/FLARE WILL HIT OR IF IT EVER WILL… Only time tells that part.

So at this point, as long as I can I will…

WALK.

AND WALK.

AND WALK.

IT HELPS SO MUCH. My legs have improved greatly.

I am truly grateful and blessed to still be able to walk.

WHAT A GIFT.

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JUST DANCE!…and while you’re at it play the bongos and tambourine…

The past few days have been really hard and intense for me and I find I start to tighten up inside and clench up all my muscles which of course leads to flared MS and lupus symptoms and probably some signs of IBS…If I’m not careful I become a hard ball of dried up goo.  You know the goo I’m talking about.  Not the good goo.  Wait.  Is there even good goo?  What is good goo?  Why am I stuck on what goo is?

ANYWAY…

Thankfully my head has been clear enough to remind me to DANCE!

DANCE!

MOVE MY BODY!

SHAKE IT OUT!

I used to think that because I “felt” like I had no rhythm I couldn’t/shouldn’t dance…that because I “wasn’t” coordinated I couldn’t/shouldn’t dance…that moving my body in any way “wasn’t” dancing because I “thought” I wasn’t a good enough dancer…

LIES!

WHATEVER!

DON’T PUT A LABEL ON IT!

JUST MOVE THAT BODY FOR GOODNESS SAKES!

LET OUT THE TOXINS!

Can’t move very well?  Well I bet there’s a part of you that can move a little.  Perhaps it’s your pinky finger.  Well then MOVE IT!

Why don’t you try it now?  Really.  Take a moment.  It’s always good to pause and take a moment.  Come on.  It’s only a moment.  One little moment.  Now MOVE something.

How’d it feel?

You don’t know.  WELL MOVE SOME MORE.

TURN ON SOME MUSIC AND BOUNCE AROUND.  You’re probably at home and reading this and thinking I’m wacky.  Yes I am.  Try it.  Loosen up that body.  No BODY should be sitting around at a computer all day anyway.  It’s OK.  You can get up from reading this and try it.  And even if you’re not at home, tap that foot wherever you are, stretch those fingers out, tap those fingers, move your head from side to side, hit your side with our hand, stretch out your toes and if you do it enough someone else near you might do the same thing and before you know it it’s become a THING!

IMAGINE THAT!  A THING!  YOU CAN EVEN GIVE IT YOUR OWN NAME!

A couple of years ago I was in this health self care support group thingie (so fancy with my wording aren’t I?) and one of the meditations we tried was “Shaking Meditation” and/or “Dance Meditation” and it MADE ALL THE DIFFERENCE IN THE WORLD FOR ME.  You see, I hold it all in before I let it all out.  CRAZY I KNOW.  Tell me.  I’m working really hard these days on letting it out.  It will eat me up and I will feel crappy.  Sure my body might feel crappy from moving, but something in me will feel relieved.  My head might feel lighter.  The endorphins will have gotten moving for the first time in Ages and may even be yawning themselves because of the fatigue from my MS or lupus or you name it but I bet I’ll feel mentally brighter after they wake up again!  There will be some relief somewhere.  I might even be breathing consciously again and realizing I’ve been holding my breath or something ridiculous like that.

OXYGEN ROCKS.

BREATHING ROCKS.

So today what did I do to help my body and mind?  Not only did I take my walk and do my Physical Therapy but I also danced, played my new bongos and played my tambourine!

I KNOW!

I WENT ALL OUT TODAY and you know what?

IT HELPED ME SO MUCH!

My mood is better, my body feels looser and I don’t feel so clenched and tight inside.

AMAZING.

Sooooo, now I have more self care items to add to my list.  More dancing, more bongo playing and more tambourine playing.  Turns out that with looser wrists (thank you recovery) it’s easier to play the tambourine and it sounded a lot better.

Oh and the best part is:

IT’S FUN!

I KNOW.  HEALTHY AND FUN.

CRAZY!

So go on out there and DANCE!  MOVE THAT BODY!  SHAKE OUT THE WEEK!  SHAKE ALL WEEKEND!  PLAY SOME MUSIC!  BANG SOME DRUMS!

And if you get a chance, let me know how you feel and leave a comment.  I’d love to hear your feedback.

LOVE TO ALL!  THANK YOU FOR JOINING ME ON THIS CRAZY RIDE CALLED LIFE!

 

Now

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301 DAYS! That’s How Many Days…

–I’ve walked in a row!

I can’t believe it! I have walked 301 days in a row. I am not kidding. I have been keeping track since I knew that I might be able to make it walking day by day.

I’m so excited! If/When I make it to a full year I will have to call/send a thank you not to my Physical Therapist who spurred me on last year in the first place. She told me just to walk. That walking was THE THING for me to do in my situation with MS and lupus. There was no question. I needed to walk. What did that entail? That entailed not judging myself by how far I’ve walked or how long. That I just needed to make it a point to walk. Seriously, she told me, I don’t care if it’s just a few minutes. If you don’t keep your legs moving you will be in trouble. Your MS and lupus will get the best of you and you may find one day that you can’t walk or that they are just too stiff and you may not have the motivation to do what you need to do–WALK– and to keep on keepin’ on.

So that’s what I’ve been doing. How do I do it? Well I walk near where my doctor appointments are. I walk in my apartment around and around if I have to. I have a walk dance I do that must look really cute. I walk around the block near my apartment. I walk at the mall I’ve gone to. I walk around the museum I have a membership to. I walk/march to a TV show I’m watching.

I WALK.

And my legs are so much better than they used to be. Sure there are days that my legs think I must absolutely be kidding them but they usually thank me in the end. In the beginning it was much harder because it felt like when I was walking that I might be causing some damage. That there must be days I shouldn’t be walking at all and I should rest them.

NOPE.

I am now more confident on my feet, I feel stronger, I have more endurance, I can walk longer distances and handle hills better, my mind and head get some de-stressing and meditation, I get to see outside and be with the world and the earth, I get to move my whole body, I can participate in more events, I can stand in line at supermarkets longer, I can handle my life better in GENERAL.

And that’s because I WALK.

And now I don’t know how not to walk during my day. I think I would be lost without walking. My body asks me for it and reminds me if I don’t do it.

SO I WALK AND I WILL CONTINUE WALKING NO MATTER WHAT AS LONG AS MY BODY ALLOWS ME.

So tonight as I think about what is frustrating me, I will turn my mind to the positive things going on in my life and one of the main parts of my life is that I WALK and I have WALKED 301 DAYS IN A ROW.

A TRUE MIRACLE and I am absolutely grateful to have met a woman, my previous Physical Therapist, who was able to get the message through to me in the right way.

JUST WALK. DON’T PUSH. JUST WALK. DON’T THINK TOO HARD. JUST WALK. DON’T JUDGE. JUST WALK.

Well, turns out she might just be onto something.

I think I’ll continue to do just that.

WALK!

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101

GO ME GO!

I HAVE WALKED 101 DAYS IN A ROW!

That’s so cool. Thank goodness I had a Physical Therapist a couple of months ago who I really clicked with. She encouraged me to “Keep On Keepin’ On” no matter what. She told me the most important advice she could give me is to walk–even just a little bit–every day. Yes, EVERY DAY.

She pointed out that with lupus and multiple sclerosis WALKING is the BEST thing I can do for me. Even just a few minutes every day will help. The point is the repetition with my muscles and with my body in general. Pretty soon my mind and body will be programmed to make it a habit and it will all work out. Otherwise, the muscles are encouraged to stiffen up and in turn I will not have the flexibility, strength, stamina or endurance and it will continue that way. She understood both illnesses well enough to tell me that she knew there were days I felt like walking WAS NOT A GOOD IDEA. It kinda did feel like she was reading my mind. Perhaps I’m too tired or have too much going on or my legs just hurt so the red flag goes off in my head that I BETTER NOT WALK TODAY AND JUST LET MY LEGS REST. BUT the point is to WALK.

She also made it a point not to bite off more than I could chew right away–that it was really okay to ease myself into it and to even do a few minutes if that’s all I could do. There was no need to push too hard or walk for an hour every day or to walk too much all at once. It’s cumulative. The body will remember, the muscles and nerves will remember. Sure it might be hard at first to mentally be committed and my legs might yell at me for using them “too much” but to keep at it. Take it easy. WALK. No judging of myself.

WALK.

So while I was still in treatment with her I attempted this idea called “WALK”. Sure I did too much at first and walked too much and wore myself out. Of course I did. I’m me. She pointed out that as humans we are all programmed to think we have to take it all on. She’s worked with pretty healthy people too who also bite off jump in right away and wonder why they can’t walk the next day or a week later.

ONE STEP AT A TIME.

So that’s what I’ve been doing and it’s worked. And I can say that it has finally clicked in. I’ve heard over the years that someone with MS (specifically) should try to exercise every day and do something–whatever that is–and that walking was a great idea.

IF I CAN WALK AND HAVE THAT PRIVILEGE THEN TO WALK IS A PRIORITY…

I do have to change it up a bit. I have a fitness walking video I use at a home, sometimes I do a dance walk type thing–hey maybe I can patent it is the Nahleen Dance Walk, I walk around the apartment (so boring but gets the job done), I walk outside, I walk where I have errands, I walk the mall, I walk a park, I walk in a museum, I walk before or after a doctor appointment.

By now I know you get the point.

I WALK.

And the payoff is really great. Not only do I know I benefit from stretching every day (been doing this for years–thank goodness), BUT now I walk every day. I have always loved to walk outside. It helps to relax me to see nature with the sky and flowers and birds–you name it. There’s even some fresh air to breathe. It’s lovely. So this is all really good for me to add it to my daily routine. I’ve noticed my legs ache and are less stiff, my joints don’t hurt as much, my legs are stronger, I have more endurance and can walk more distances and a lot of times it’s not my legs that bother me much–it’s the rest of my body.

I’m so so glad I listened to this very special woman. She has really changed my life.

ONE STEP, ONE WALK AT A TIME…

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