Posts Tagged With: grateful

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.


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.



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.




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.



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.


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.


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.



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.


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????


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Today Is World Lupus Awareness Day!

“I can’t diagnose you with Lupus now but I can tell you that you have enough of the list of Clinical items we look at to diagnose you with it eventually that it may come up for you in the future. I’m so so sorry I can’t diagnose you now. But please PLEASE make sure to keep it somewhere in the back of your mind for the future when things are at your hardest because this will likely come up in the FUTURE. I know you don’t want to hear that but it will be important to remember.”–That’s what my first Rheumatologist drilled into my head 11 years ago in 20012, as I was on the journey to find out what was wrong with me in the first place. I have no doubt she was an Angel sent to help me find out the VERY HARD way that I had Multiple Sclerosis.

8 years later I can tell you that I believe she was also sent to help me FINALLY be diagnosed with Lupus. That was in June 2010.


They still didn’t know enough about Lupus even 11 years ago for her to diagnose me. I can remember her apologizing profusely that she wouldn’t be able to give me any answers about my very uncomfortable symptoms that were in her Specialty–such as me having Lupus and me thinking at the time that that was quite alright. I was 26 years old at the time. I didn’t really need to hear about having Lupus. Really. MS was enough.

I didn’t really need to hear about having MS either but I did. That December of 2002 I was diagnosed with MS because I had FINALLY had an MRI and there were lesions on my brain to show that I had MS. There’s a lot more to this story but these days looking back on the traumatic Hell I went through back then, I’m pretty darn sure I had both MS and lupus and that they were flaring up at the same time but MS was the disease that had physical evidence to show people. You could SEE it. There was SOMETHING to prove. MS is also a VERY confusing disease to diagnose BUT at least there are lesions on the brain.

Lupus doesn’t have that. Lupus is even more invisible. It’s the Great Imitator. It’s the Great Mimmicker. There’s pain, there’s fatigue, there’s a brain fog and they all show up in MS–and now I’m learning they are different BUT wow they overlap like crazy. Lupus also affects organs. It affects the body tissue. It affects the mouth and can make it crazy dry along with eyes. It can cause rashes. It is very sensitive in the sun. HOWEVER, it seems like if the body doesn’t CRASH in some way than it’s hard to figure out. All of my symptoms were blamed on the MS. Even more interesting is that I think I’ve had something like Lupus since I was a kid. Imagine treating that as a kid. Yeah I wouldn’t have liked it but it would’ve explained A LOT and I have a feeling I’d be feeling lots better right now.

For me the signs that “something else” was going on in 2010 were that my thyroid acted up, then my eyes got really weird, THEN my liver nearly failed on me and the levels were toxic. That caused me to basically vomit up my ENTIRE BODY. That is the only way to explain it. I don’t vomit. This may be TMI for you but it’s the truth and I’m here to tell you the truth. I don’t vomit. I get extremely nauseous. Vomiting is strange for me. Sooooo, that really should’ve been the big indicator something was off. But no, I thought it was an awful stomach bug. How did I know the difference? Looking back, I was so out of it there’s NO WAY I would’ve known left from right at that point.

So what happened?

MY BODY HIT A WALL and my liver was nearly in failure. Thank goodness I’m so sensitive and my body gave me enough warnings. Thank goodness I listened. Thank goodness I am pushy and stubborn.

In June of 2010 I was severely ill and doing that “vomiting” I talked about earlier. It took 2 MORE MONTHS to be diagnosed with Lupus.



THAT IS TOO LONG. What if something else had gone wrong? What if I wasn’t being seen by any medical doctors at the time and tried to tough it out? What if my body shut down on me? These are the kinds of things that run through my brain. I can’t help it.

The most prominent question is this:


IT SHOULDN’T BE THIS WAY. LUPUS IS A VERY SERIOUS AND DISRUPTIVE DISEASE AND I’M STILL RECOVERING. It was a very special Doctor who helped me 11 years ago when I needed it the most. Without her I wouldn’t have EVEN THOUGHT to bring up Lupus. It’s not a black and white disease. It is all in the greys. And let me tell you, it gets REALLY COMPLICATED when Multiple Sclerosis comes into play.


And this is why I spread awareness and tell my truth about what I have been through. This is why I believe so much in spreading the word about what I’ve gone through and am so grateful that there are organizations who have established Days like World Lupus Awareness Day. PLEASE. If you aren’t feeling well and you don’t know what’s wrong, keep asking. You know your body. You deserve answers and there is going to be someone out there who can help you. They may not have all the answers or tell you what you want to hear (boy is that the TRUTH) but they can help lead you in the right direction.


So please if you are so inclined, spread the word about Lupus. Spread the word about all of these crazy autoimmune diseases. They are all so similar and there is so much more to learn. And please, take care of yourself and listen to your body. You deserve it.

If you have any questions or comments let me know. Let’s talk about this. Let’s spread awareness. No more hiding. The more we know the better off we’ll all be.

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-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.



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.



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…




IT HELPS SO MUCH. My legs have improved greatly.

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


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Yes I’m here!

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

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

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

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

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

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





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


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

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

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

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


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



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

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

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

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

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


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

Thank you thank you thank you.

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

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



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

Go me!

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

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

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


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

And so I leave you with this:


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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”.


*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 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:



****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.




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Motivation: GRATITUDE

This morning I am grateful.  It’s such a relief to feel grateful.  It would be so nice to feel it all the time.

I’m grateful to be able to get up and face the day.  I’m grateful for so much love in my life from my husband, my kitty, my family, my friends, a huge support system, people in general and with life.  I’m grateful to have a roof over my head, an awesome car, for food to eat, water to drink, air to breathe–that I CAN breathe.  Then there’s my health: the progress of recovery, to take it one day at a time, really awesome proactive doctors, to be able to walk, to see, to move, to even function at all.  I have an abundance to be grateful for.  The list is endless.

What started this new round of gratitude?  I believe it was asking for more help yesterday.

Being on Long Term Disability has required an enormous mental surrender.  I have had to let go of what I thought I needed to have to survive: a job, a consistent paycheck, at least 40 hours of knowing exactly what I’m doing in a week.  It has been almost two years without that routine and somehow it’s all worked out.  Somehow Corey, Cleo Kitty and I have been taken care of.

BUT it takes A LOT of work.  I not only have to spend 24 hours a day 7 days a week taking care of me with self care but there is a mega amount of medical business to attend to too such as: medical insurance red tape, my plethora of doctors, a long list of medications and regimens, and dealing with Social Security Long Term Disability along with the Private Long Term Disability that is provided as part of the Benefits from my old employer.

YES I am truly grateful to have any access to Long Term Disability and to be taken care of AT ALL.  HOWEVER it is SO DIFFICULT to even admit I am disabled, to then ADMIT I can’t work right now, and then ASK FOR HELP, for financial assistance so that I can be a contributing member of society.  And not only is it hard for me to surrender to that need for help, but then they can make it SO HARD to even get the help I need.  This is NOT an easy process.


With that idea in mind it was so REFRESHING to call the Director of Benefits (yes, I have her direct contact number) of my old employer and let her know about the messy situation I’m involved in between both Long Term Disability Entities.  Not only did she LISTEN but she AGREED with me that that sounds like a mess and she seemed genuinely surprised this was happening.  I ASKED HER TO HELP ME and you know what?  She’s going to try to find out what’s going on and to do just that, help me.  She was nice and she was sincere.  She backed me up all the way.  It doesn’t mean she’s going to be able to change anything but it is just that much more empowering to feel her support and for that I am grateful.


What a wonderful word.  What a inspiring idea.

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