Posts Tagged With: chronic illness

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.

Advertisements
Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

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!

Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

I Am Saying What I Need To Say

Last week I almost DROPPED my Blog altogether due to legal advice given to me.  It appears that social media is hindering those of us with Disabilities.  Apparently if those of us with Disabilities (as if we asked for them) use the internet and “look capable” than we must be able to ….FILL IN THE BLANK HERE… Needless to say I was NOT a happy person.  This Blog has become a Community for me.  Not only have I been able to Say What I Need to Say BUT I am opening up a place for others to join me.

THIS IS NOT JUST MY BLOG.  THIS IS OUR BLOG.

To be honest, I am not ready to write about last week’s awfully traumatic experience (for me) just yet.  I am worn out from wrestling with myself about the entire subject.  The best part is:

I WILL CONTINUE TO SAY WHAT I NEED TO SAY AND I WILL NOT HIDE.

I have found that music is incredibly healing and I feel a need to Share another song that has meant a lot to me on my journey with chronic illness over the years.  Thank you John Mayer for this song.  I heard your words loud and clear and I continue to HEAR them.

Here’s John Mayer’s song, “Say What You Need To Say”.  Also as an added bonus it looks like this song/video was made for a movie in 2007 called “The Bucket List” with Morgan Freeman and Jack Nicholson.  I hope you enjoy the song as much as I do.  It is definitely one of my theme songs.

Categories: Uncategorized | Tags: , , , , , , , , , , | 9 Comments

Looking For People Who Have Both Multiple Sclerosis and Lupus

I’m on the Search.

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

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

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

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

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

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

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

That’s what’s been on my mind lately.

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

That seems to be the theme. CONNECT CONNECT CONNECT.

Categories: Uncategorized | Tags: , , , , , , , , | 4 Comments

Stream of Nahleen-ness

*Today is Monday.  Yippy Skippy.

*I wish I felt better.

*I want MS and lupus to leave me alone.

*Cleo’s cute.

*I like Corey.

*Sleep seems to help me mentally and physically these days.

*Why is it that any hope and positivity I seem to have seems to either go away or be masked by worsened physical symptoms and discomfort?  Why do these “negative” thoughts have so much power?  Why can’t my hope be more powerful?  What are “negative” thoughts?  What makes them “negative”?  Why am I obsessing over “negative” thoughts?  What about hope?  See there I go again!

*I’m glad we took out the wedding quilt my Mommy-in-law made and are using it.  It’s comfy and it feels like she’s hugging me.  My Cleo Kitty really likes it today and it’s her new favorite place.

*I think I like the new Norah Jones CD.  I feel conflicted.  I can’t make up my mind.  I like the music.  I like her.  I can’t seem to put them together for some reason.

*On the music note, I am now a BIG fan of Gotye.  Have you all listened to his music?  His music video for “Somebody I Used To Know” blows my mind.  You gotta check it out if you haven’t already.

*I wish I could be as creative as the Gotye music video I posted above.  On that note, what am I waiting for?  What holds me back?

*I’d like to get out of my way more and be more of “me”.

*WHO AM I?

*Why am I me?

*This Blog makes me feel like I need to get a life.

*Thank goodness for AC.  Helps me even out my temperature.

*’Tis the season for me to start to take on the weather as my nemesis as if it is out to get me.  Like it is trying to make me suffer with the heat.  Like it knows and cares about me enough to single me out and take me on and make me feel worse with MS heat fatigue.  As if it’s sunnier on purpose because my lupus gets worse.  As if I’m that important.

*It would be nice to control the weather.  I have a thermostat to control the AC and the heat a bit.  Why not the weather as a whole?  Again, if only I was that important.  EGO!

*Seriously though, the weather makes me angry when it affects my symptoms and makes me feel worse.  The fatigue, aches and stiffness are not fun.  And it plays with my head.  Or I play with my mind is more like it.  My symptoms start acting up and then I think “Oh no!  Something’s wrong.  I’m getting worse!” and then I wait it out, I put on the AC more, I go into darkness away from the sun, I exercise, I distract myself with something I like to do and get even a little bit out of my head and then I’m like, “Oh.  It was the sun and heat”. I especially notice it when the cooler seasons come rolling on in and it occurs to me that it REALLY was the sun and the heat.

*Still, though.  It sucks big time.  The weather affects me so much!  Stupid weather!

*If there’s an event going on outside I probably won’t be able to go because the sun affects me so much and then the heat along with it.  I hate missing things.  I hate being left out.  I like being social.  I feel like I’m going to lose all my friends and family because I couldn’t be a part of whatever it is.  Yet every time I don’t go and push it on my body too much I do end up thanking myself in the end and usually physically feel better.

*Stupid MS and lupus!  Go away!

*So I’ve found for the first time ever in dealing with my chronic illnesses that first of all I can sleep better and sleep more.  That’s already amazing.  And now I’m finding that getting more sleep lessens the pain I’m feeling and of course the fatigue.  Also amazing.  Sooooo, I’m trying to get over my ego and my stubbornness and let myself sleep more.  I have not ever been a really good sleeper so I have years and years of sleep catching up to do.  It really okay just to sleep.

*Speaking of that, will I ever catch up with me?

*I feel like there aren’t enough TV shows and fictional books out there about a character with a quiet/invisible chronic illness such as MS or lupus and there needs to be more.  Sure there are those really visual illnesses such as AIDS and cancer and not to belittle those but what about the OTHER illnesses that no one understands (even those with them)?  What about the every day lives of just trying to get up?  Just trying to take a shower?  Just trying to eat?  Just trying to get though a day, an hour a moment?  Is this my next calling?  Should I develop this idea?  Would anyone pay attention?

*Do I even have the energy to write a whole book?  To produce a whole TV show?  These are things I want to do still and yet I don’t know how I would have the stamina to do them.  Perhaps I need to break them up into smaller pieces and do one thing at a time.  But I have limitations and things will probably go slower than with someone who’s healthy. Then again so what?

*I’M SO TIRED OF LIMITATIONS!

*I’m so tired of all the self care I need to do for me, of all the time it takes up.

*Then again: I’M SO GRATEFUL for self care and to be doing these things for me and to be feeling better.  I’m so happy to just look up at a sky and to keep it more simple and to love my Cleo Kitty and to laugh and giggle and to just be.

*I want to be a smurf.  They are who they are and they’re given names for their personality.  As if it’s that easy.  But why can’t it be that easy?  I’d be little and I’d be blue and I’d go get into trouble and Papa Smurf would ALWAYS save me.  How cool would that be?  And I’d go around singing:

“LA LA LA LA LA LA LALA LA LALA LA LA!”

 

****DEDICATED TO: My cousin Brian Knight who passed on too quickly 6 years ago due to yucky cancer.  He was quite the talented writer and would send his friends and family frequent Random Thoughts emails about everything from his health struggles to baseball.  His insights were funny and profound.  Thank you Brian.  You are quite an inspiration to me.  I miss you.

 

 

 

Categories: Uncategorized | Tags: , , , , , , , , , , , | Leave a comment

Not a Happy Nahleen This Morning

I am so not a happy Nahleen this morning. I feel awful. I tried a new blood pressure medication yesterday–ONLY ONE PILL–I will NOT be taking that again.

I feel weak, depleted, achy, stiff, my body temperatures are going hot and cold, and I really feel like I’m getting the life sucked out of me. I’m trudging through muck and I feel like my hands are stuck to a stringy glue-like substance and I’m starting to lose touch with me.

I’m so frustrated and powerless. I had plans for a Physical Therapy appointment and I also had a commitment to fulfill for tonight. Both of these plans will now have to be cancelled for today…because of my body’s reaction to ONE PILL of a line of blood pressure medications that I previously struggled with six years ago. So I got to wake up off and on all night with my body feeling so “weird” and was given a chance to reminisce about those horrible days of trying crappy medications to take care of an issue that had nothing to do with my chronic illnesses. I think what was happening back then was that my multiple sclerosis and lupus (didn’t know I had lupus at the time) were feeling very overwhelmed by any new medication because I was taking a very strong injectable medication for my MS and they were especially unhappy with BP medications so my body went into purge mode. I remember all too well that I was starting to feel lifeless, like the medications were sucking the life out of me.

I have been currently taking a blood pressure medication that has actually worked out but my doctor insisted on raising the dosage by adding another medication and instantly my mind went into RED ALERT. I figured that I’d be okay this time because both my MS and lupus are being treated and I’m no longer on the injectable medication. WRONG. Turns out my body rejects diuretics altogether. No more. All done. I tried it for one day. My body hates it, doesn’t want it and it is all done.

I agree. I hate it, I don’t want it and I’m all done with it too. I will be calling my doctor today to let him know I’m not taking it. It has been a long time since I woke up feeling this physically crappy. Turns out I like my body much more without this new poison. Hey, at least it helps me have perspective that I don’t need to feel this crappy (and I haven’t FOR A LONG TIME NOW I GUESS) and that I want my previous body back–you know, the one from over 24 hours ago that hadn’t taken this stupid medication yet.

So today I will be resting, drinking lots of water, hoping my body can rebuild and repair itself and will do my best to have patience. It’s time to be gentle with me and to remember that I’m not the same person I was mentally or physically six years ago and I can get through this one thing at a time.

Categories: Uncategorized | Tags: , , , , , , , , | 2 Comments

Create a free website or blog at WordPress.com.

%d bloggers like this: