Posts Tagged With: body

Diagnosis Part 5: MRI

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

FREAK OUT BUT STAY STILL!

STAY STILL?! STAY STILL?!

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

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

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

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

FINALLY…

THE MRI MACHINE STOPPED…

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

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

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

DIE.

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

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

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

YES! GET ME OUT OF HERE NOW!

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

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

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

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

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

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

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

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

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

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

I was human.

HUMAN.

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

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

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

And what happened after that?

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

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

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

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

THEY STILL SUCK!

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I’m On The Right Track Baby, I Was Born To Survive

Thank you Lady Gaga for those incredible words!

“I’m on the right track baby, I was born to survive.”–Wow. Profound for sure.

Lady Gaga’s song, “Born This Way” inspires me to get up in the morning. It helps me to keep on moving. It’s been over a month since I’ve posted anything and I think a lot of that is because I have had so much up here in my mind and yet not a lot of words or perhaps too many words to process it all. It’s been quite a month. We traveled to lovely peaceful Cambria again and were able to get away for a few days. I had a wacky week beforehand running around (as much as someone who doesn’t like to run and isn’t able to really run with MS and lupus can), then was on the trip and was able to take some deep breaths and let go, and then when I came back I crashed.

Life started getting really hard again when I was back home. The sun started getting more intense as June traveled through its days and the temperatures climbed higher and my body reacted right away to it. As I’ve mentioned so many times before, the summer is the hardest time for me. The heat makes my MS act up and the sun makes my lupus act up and they act up together and that creates what I keep hearing from everyone I encounter the oh so technical term and experience of a “Double Whammy”.

GOOD TIMES ALL AROUND.

Um actually…NO. NOT GOOD TIMES.

This has happened to me every summer since at least right before my MS diagnosis in December 2002. Summer kicks my butt. I feel like a different person. I wonder if everything has gone “kerflooey” with my body and this is it. This is the big bad ATTACK of all attacks and it’s a “loopty-loop rollercoaster” (phrase given to me by my fabulous Chiropractor last week and I’m stealing it because it is a perfect description) and I’m done for. Except…that doesn’t really happen. What happens is I feel crappy. I start to get the “heavies” a lot more which remind me of heavy fatigue that feels like a dental x-ray vest thingie from the ’80s and that to me is a HUGE reminder of RED FLAGS GALORE to slow down and pretty much stop EVERYTHING. That includes using my brain too much because even overstimulation is a problem. Plus I start to tingle more, my muscles get tighter and achier and have a harder time releasing, I feel more weak, I get the MEGA BLAHS, I just feel gross, my cognitive symptoms really start acting up more than ever and I have a hard time focusing and dealing with numbers (used to be so good at numbers and math in high school and college and THANK GOODNESS I didn’t go into Accounting or something when I was being encouraged to because I’d really be at a loss now), I most often feel like the life is being sucked out of me and I could go on. Then I have these “better” times where I feel like I could get through. I still don’t feel as good as when all temperatures are cooler and my body finally has a real chance to cool down but there’s a calmer plateau to land on for a bit. Then it starts up again and it’s not usually the same as before but different so I have no idea what’s going on EVER.

The point is, life with my poor inflamed body is EXTRA EXTRA HARD.

EVERYTHING TAKES SOOOOO MUCH MORE EFFORT.

ACK!

So right now I’m trying to keep things more simple. Ha! Turns out life is still happening and things still need to get done but I need to go with what my body needs and the lines get blurry there. What does my body need? Does it need more rest? Does it need my mind to stop worrying about how I’m feeling and get a break? Does it need to be cooler? Sometimes it doesn’t like the cooler temperatures because then the lupus starts acting up more and making my joints hurt. Sooooooooo, I’m constantly stuck between a rock and a hard place and there is always a compromise of sorts. There is never a time my whole body (including mind) are happy.

And that’s why I share this Lady Gaga song with you. So much of this song is about acceptance of self. And what’s even more interesting about her is that lupus runs in her family and there has been so much talk that she has lupus but she says it’s borderline lupus. Who knows what that means but to me this song means even more because maybe just maybe she might GET IT.

This video may be just a BIT, yeah JUST A BIT, theatrical and over the top but the words say it all. The message is so clear.

I AM WHO I AM AND I NEED TO LOVE ME.

I’M BEAUTIFUL…I’M ON THE RIGHT TRACK (even if it doesn’t feel like it right now)…AND I WILL SURVIVE.

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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.

8 YEARS LATER.

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.

2 MORE MONTHS.

I WAS DIAGNOSED WITH LUPUS IN AUGUST 2010.

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:

WHAT IF THAT ANGEL OF A RHEUMATOLOGIST IN 2002 HAD NOT DRILLED IT SO MUCH INTO MY BRAIN THAT ONE DAY I COULD HAVE LUPUS?! THAT ONE DAY THINGS MIGHT GET AWFUL AND I MIGHT BE FEELING SO TERRIBLE AND NO ONE, AND I MEAN NO ONE, COULD DIAGNOSE ME WITH ANYTHING TO HELP ME FEEL BETTER? WHAT IF I HAD CONTINUED ALONG THINKING I ONLY HAD MS? WHAT IF I HAD NOT SENT MYSELF TO A RHEUMATOLOGIST BECAUSE I WAS AT THE END OF MY ROPE?!

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.

REALLY COMPLICATED.

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.

AND ONE LAST THING: THANK YOU TO THAT SPECIAL DOCTOR WHO WALKED ME THROUGH THE HARDEST TIME OF MY LIFE 11 YEARS AGO. I AM FOREVER GRATEFUL FOR YOU. YOU GOT ME ANSWERS ABOUT MS AND YOU GOT ME ANSWERS ABOUT LUPUS EVEN THOUGH I HAVEN’T SEEN YOU FOR 11 YEARS.

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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Heel 2nd Toe

Heel 2nd Toe.  Heel 2nd Toe.  Heel 2nd Toe.

That’s what I had to chant to myself (and will need to TRY to do and REMEMBER to do from now on) and guide myself to do as I did what my Chiropractor called, “drunk walking” (because it’s easy to lose my balance when it’s so new) down the street to train my body how to walk correctly and in the right alignment.  Apparently my walking alignment is way off so I get to do what feels really hard to do.  And so AWKWARD.  A friend of mine loves using the word “Awkward” so I hope she appreciated me using it here in this post.  ANYWAY–When I’m walking I’m not supposed to be using my Big Toe to guide my walking.  I’m supposed to use my 2nd Toe next to the Big Toe and also focus on my hips to guide my leg out in front of me to land on my Heel and with the foot turned in (only what it seems like to me–it’s actually not in…it’s just not too far out and walking like a duck anymore…) and that’s my newest exercise.  Weirdest part is that when I stand “right” and look in the mirror what FEELS so wrong actually does look RIGHT.

I’M RE-LEARNING HOW TO WALK AGAIN.

WEIRD.

It’s hard to train a body to move differently after it has been doing probably the same movement for almost 36 years….

So I’m trying to be patient. He had me take a walk up and down the block doing that.  I asked him if the residents on the street where his office is ever stop in and ask him what is going on in here and why are there people doing all kinds of strange movements walking down the street.  He said NO but he’s sure they talk about it amongst themselves and try to figure it out.  “Keeps their minds going…”, he chuckles.

I bet.  So I did just what he asked me to do.  Of course there were people out and about.  Don’t mind me.  Just walking totally off balance…  It was a beautiful sunny California spring day.  The birds were chirping.  There was a lovely breeze blowing through the leaves.  Flowers have been in full bloom.  I was sure EVERYONE ever was staring at me but I’m guessing they weren’t.  And if they were, I hope they had fun watching me.  I didn’t look as wobbly after awhile but I was walking really slowly almost in a walking meditation and really focusing on what I was doing.

AND YOU KNOW WHAT?

My overall body felt much better walking the “correct” way.  I was surprised.  As much as my hips started aching (who knew hips were used so much with walking?), certain muscles in my legs that I didn’t know existed started yelling at me, I kept going.  I’d let myself stop, take a break and shake it all out but I’d start up again.  It really did slow me down and it was quite relaxing at times…Definitely could be a meditation if it wasn’t so distracting at too.  Sometimes I’d be distracted too and find that I was back to my old walking so I’d start up again.  Going that slow I was able to see the colorful vibrant flowers I walked by, to see more birds flying around me because I wasn’t moving so fast, a butterfly and to REALLY HEAR the breeze. That was a gift.  I’ll take it.

I’m trying to remember this so that when I wake up tomorrow morning and wonder why on earth my legs and hips are aching so badly I’ll be reminded of the “new” walking I had been doing and will have to try to do from now on and then hopefully I’ll be reminded of how peaceful it was at times.  There were some truly quiet moments…

PRECIOUS ACTUALLY…

Otherwise, he stretched my body in ways I didn’t know it could stretch today and he also gave me even more homework to FIGURE OUT what the MAGIC word was to get my hips to RELEASE and LET GO.  He said the word RELEASE doesn’t work for my hips.  He’s even tried others (I had no idea he was doing this I was so focused on what was going on) and they didn’t work either.  Soooo, he’s asked for help in figuring out what the MAGIC WORD is for helping my hips and torso to RELEASE.

MAGIC WORD.

Silly guy.  Felt like I was back to being 6 and an adult asking me, “What’s the Magic Word?”.  The thought crossed my mind that perhaps he should say, “Pretty Please?” and then maybe my mind and my body would finally RELEASE and LET GO…

So yeah.  Good appointment.  Doing OK so far.  Feeling a bit of the walk and a bit more lightheaded as the day goes on.  So I should probably stop writing, finish up my day and get to resting.  Never know what mental and physical symptoms are going to show themselves with these treatments…

Oh and by the way, I get to stay up as long as I want if I keep getting the late night energy that tells me I don’t need to sleep.

SLEEP?  WHO CARES ABOUT SLEEP?

Me in the mornings…

BUT–That’s what my body keeps asking me late at night.  I’m becoming quite the night owl.  I’ve been concerned about this because I need my sleep but when I told him today he was excited that I was starting to get ENERGY BACK.

“Yay!”, he exclaimed as I told him.  “Take advantage of it.  Don’t suppress it.  This is actual ENERGY.  Take the time to do some sit-ups (Ha!), some push-ups (Ha!), some walking around your apartment, some dancing…something.  Find an outlet and some activities to do when this happens.  Your body is resetting it’s cycles and rhythms.  I know you need sleep.  I’m sleep’s biggest advocate.  BUT your body isn’t ready for sleep like that just yet.  At least not at night.  It’s just learning how to be again.  LET IT!  DON’T WORRY.  DON’T PUNISH YOURSELF FOR NOT SLEEPING.  USE IT!  I bet you’re not sleeping well when you have this energy right?”

I told him no.  Definitely not sleeping well.

He responded with an encouragement to use the energy so that I could sleep better and it would be able to even out eventually.

His whole point was that this is like a “RE-START BUTTON”.

My body is RE-STARTING…

RE-STARTING…

Hmm.  Cool.

I’ve been saying off and on over the years that I needed a Jump Start at times.  I guess this is my chance.

And now back to the chanting…

HEEL 2ND TOE.  HEEL 2ND TOE.  HEEL 2ND TOE.

 

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Telling the Truth is Really Hard

TRUTH: The past 24 hours have SUCKED mostly physically but mentally too!  There I said it!

I TOLD THE TRUTH!

DETOX IS HARD!

ANOTHER TRUTH!

Being on an emotional roller coaster yesterday for HOURS was REALLY HARD!

MORE TRUTH!

Feeling A LOT OF PAIN, FATIGUE WITH HEAVY LIMBS, SHAKINESS, LIGHT-HEADEDNESS, WEAKNESS, TINGLING, WAKING UP IN THE MIDDLE OF THE NIGHT WITH A HORRIBLE KNIFING PAIN ON MY RIGHT SIDE (making me freak out it’s my appendix or something crazy) AND HAVING TO RUSH TO THE BATHROOM (TMI–just getting you ready) ONLY TO HAVE MY BELLY MAKE THE LOUDEST RUMBLING NOISES AND THEN ACTUALLY HAVING THAT TRIP TO THE BATHROOM BE PRODUCTIVE (used to not be in the middle of the night and I would suffer for hours so that’s something) AND THEN HAVE THAT PAIN GO AWAY BUT FEEL THE DIGESTIVE AFTERMATH IS REALLY HARD!  BUT–THANK GOODNESS THAT KNIFING PAIN WENT AWAY AND HAS NOT COME BACK.

YES I’M YELLING!

PHEW!

It feels so good to get it out.

I have only had 2 Chiropractic treatments in the past week, BUT I have also added an Alkaline Water Detox prescribed by this Chriropractic Doctor added to my treatment so it has been extra potent.  I CLEARLY have a ton of acid in my body.

IT HAS BEEN 1 WEEK AND MY BUTT FEELS KICKED FROM 2 CHIROPRACTIC TREATMENTS?!

OY!

You know, I have heard over the years from all kinds of people on social media and elsewhere talk about all the “GOOD” effects of Detox of the body.  NOT ONE OF THEM THAT I’VE NOTICED HAS EVER TALKED ABOUT ANYTHING NEGATIVE.  Did they ever feel anything crappy going on in their bodies or was it just absolutely divine and magical with birds chirping with light breezes as they frolicked over the rolling green hills singing songs from the “Sound of Music”?  That’s what it’s always felt like to me.  So I have no idea if these people have EVER felt crappy.

Is it because they don’t want to tell the truth because Gawd forbid they look weak?  Is it because they really are feeling JUST PEACHY (although if you ask me I’d never say I was Peachy because I CAN’T STAND PEACHES so it would be the opposite for me if I said I was PEACHY.  In fact let’s all make that note now.  PEACHY for me is CRAPPY.  OK then.  Now that we’re all clear.  Back to my ranting…) KEEN?  Did I even spell that word right?  The point is, AM I THE ONLY ONE WHO HAS FELT CRAPPY FROM DETOX?  AM I THE ONLY ONE WHO IS NOW TELLING THE TRUTH?

MORE ON MY TRUTH:  Okay.  So for the past 24 hours I have wondered what wall I hit this time.  In some ways I haven’t felt like this in a long time.  Felt like someone kicked my butt and the rest of my body really hard.  What’s interesting is that the first 24 hours after treatment were actually QUITE GOOD.  I think I was on a mental high and my body was TRYING to follow along.  I felt so much mental clarity and relief and life almost felt like it was ALL good no matter what.  I almost wanted to skip down the street singing “La la la” but my legs weren’t QUITE up to it.  Oh and just to be clear, I didn’t feel up to frolicking through the rolling green hills singing songs from the Sound of Music.  I wasn’t THAT good.  That’s good right?

Anyway, I did so much in that 24 hours because I thought, WOW, I can do this.  This Chiropractic treatment stuff rocks.  It was ONLY the 1st Treatment that would be really hard at first.  Perhaps I’ll be feeling this later but not now.  LIFE IS GOOD.  I got home, made some medical business calls, wrote a Blog post, did stuff and things and I DID let myself REST a bit BUT THEN off I was running out to get groceries that evening while my mental hyperactivity was still on overload (I think now that I look back).  I mean, we NEEDED groceries and my head told me it was RIGHT then no matter what.  So I left at 6:30pm and by 7:30pm as I was almost done my ARMS started telling me they were really tired and didn’t want to work much more and then they were in pain.  Then by 8pm my BODY was done.  By 9pm my MIND was done.  And yet there was still some clarity so I stayed up way too late.  I CONFESS.  I didn’t LISTEN enough to my body at that point.

Got up for a dang Fasting Appointment the next morning to have blood work done with a doctor I have VERY mixed feelings about and thought all was going to be OK.  I was still OK.  Sure I was tired but Fasting Appointments are really hard for me.  My body with its MS, lupus, IBS and you NAME IT needs its routine.  No food means no medications.  No medications means my body is already unhappy.  No food yet already being active when on a normal day it usually takes me over 4 hours to really feel like I can go on with my day as a human being is not a good thing for me.  At least let me have some food.  PLEASE.  If my body lets me that is…

ANYWAY, after the appointment, I ate and I felt a bit more invigorated YET to be honest my body was starting to protest more.  And then I ran around doing too many errands at once when I should’ve just gone back home to at least get some more rest before doing them made my body VERY UNHAPPY before 12pm.  The appointment had been at 8:30am.

BY 12PM I had HIT A WALL.

ALL DONE.  Had to push to do the basics.  The emotional roller coaster (was told this would happen even more and be magnified according to my Chiropractor as the emotions are cleared out and released from my body and it was ALL part of the healing process) started for the next 5 hours at least, my body had a hard time letting me do the basics like get up and move around.  It was shaky and weak and in pain.  SOOOO DONE WITH ME.

So I rested.  AND RESTED SOME MORE.  Resting helps.

RESTING HELPS.

Phew.  Sometimes resting doesn’t ALWAYS help the way I want it to.  My body has been recovering ever since.  I’d get waves of physical symptoms into the night last night and then there was that time in the middle of the night of complete and utter pain and discomfort and I’ve been working through that ever since.

SO GLAD I CAN WRITE THIS.

Yesterday I wouldn’t have been able to write this in any way.  ALL OF ME WAS DONE.

DONE.

But this Blog post has been bubbling up to the surface ever since I FINALLY was able to really get up out of bed today.  EXTRA SLEEP HELPED TOO.  I HAD TO WRITE THIS TODAY.  I HAD TO EXPRESS MYSELF.  I know it is all part of the healing.  I call it EMOTIONAL HAIRBALLS.

Meanwhile at the same time, as I think about how my body is overall, I know it’s not a regular lupus/multiple sclerosis flare.  I know my body is flaring up because all kinds of healing trauma (WHAT?  HEALING TRAUMA?  Parts of me want to object to what I just wrote and argue with me.) because it feels cleansing.  It feels like all kinds of toxin crapola is being FORCED out.  My mind is clearer.  My body is clearer.  So strange to say that and feel it and NOT REALLY BE ABLE TO DESCRIBE IT.

So the FEAR comes up.  Is this Treatment too much for me?  How will I do this?  I DON’T WANT TO MAKE MY BODY WORSE.  I CAN’T MAKE MY BODY WORSE.  I DEAL WITH ENOUGH.  IT’S HARD ENOUGH.  But then the nurturing side of me comes in and gently reminds me that I am feeling better at the same time.  I’m going to NEED TO BE VERY UPFRONT with the Chiropractor tomorrow at my next treatment and tell him EVERYTHING that has gone on in the past 24 hours BEFORE he jumps right in and manipulates my body into its relieving craziness of the next treatment.  He had told me it would be hard especially at first and to try to trust and be honest with him and myself in all ways at all times about how I’m doing.  That we would adjust treatments accordingly.  He also told me I’d have to rest more.

That’s hard to do.  I’m TRYING to have a life and I have SO MUCH going on right now.  FINDING BALANCE is a whole other issue I’m dealing with.

WHERE DOES IT ALL FIT IN?

Well what I have to remind myself is that it all fits in the way it is supposed to fit in.  It will all work out and it will happen or not happen BUT the world still turns.  It doesn’t explode because “MY PLANS” didn’t work out the way I liked.

DO THEY EVER?

SO WHY DO I KEEP TRYING TO FORCE MY PLANS OVER MY LIFE?  It doesn’t work that way.

So for now I’ll go back to resting and doing THE BEST I CAN WITH WHAT I HAVE.  It feels really good to have communicated this today.  Thank you ALL for reading.  It means so much to be able to get it out and STOP HOLDING ONTO IT.  Something tells me this may not have come out if it wasn’t for this detox and new treatment journey I’m starting.

I feel much better and calmer right now and I will enjoy it while I can.

Take care all and please if you can, be gentle with yourself and your body.  Healing can be really hard but what I’m discovering is that I’m worth it and so are you.

 

 

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WHOA! Chiropractic Treatment is CRAZY…but good…I Think?!

Gonna keep this short because I’m supposed to be resting and finishing up here but I wanted to share with you all that I had my first Chiropractic treatment today!  Oh…and I SURVIVED!

CRAZY STUFF that mode of therapy.  My body was twisted, stretched, beaten, shoved, poked, vibrated and manipulated into numerous positions I DIDN’T KNOW existed.  And the awesome part is that there was some RELIEF.

RELIEF.

That’s a nice word isn’t it?

And there was some pain and strangeness to it.  My mind more than anything was trying to figure out WHAT THE HECK I had gotten myself into next…It was almost like it was saying THANK YOU at one moment and then WHAT THE?! the next and then it was like it started speaking to me and the therapist.  He said, “Your body knows what it wants.  It’s thanking me right now.  It wants help getting the walls down and opening the doors”…

CRAZY.  Like I said.

For years I have said that I want to be SOOOO STRETCHED in ways that no one could understand I was talking about.  Perhaps this may be what I’m liking for right now.  I was told I may feel some emotional fits and strangeness as the tightness and toxicity gets cleaned out and that I may feel some popping and cracking and pain and tingling here and there and perhaps a bit dizzy and strange.  Yes the dizzy and strange comes and goes since the first treatment.  That’s for sure.

Before the treatment he was going over a whole work up report he had made up for me and showed me which parts of my vertebrae were in trouble and damaged and were also out of alignment and then he showed me all the symptoms that show up from these trouble areas and it was BAFFLING TO SEE some of the symptoms I have brought up to EVERY singe medical professional I can come up with and NONE of them have ever been able to really help me.

It was as if my body had found a TRANSLATOR for some of my major perplexing issues…

CRAZY.

And it helps that he’s nice, normal and he wants to heal.  I can feel that.  He also must be incredibly strong with the work he was doing on me.  WOW!

So I’ve made a 6 month commitment to see him for intense treatment and he said he could guarantee me I could feel 40-50% better at least than I do now with how I am.  HE ACTUALLY GAVE ME A DEADLINE!

A TIME COMMITMENT!

I have to do what he’s asked me to do for exercises and other devices he gives me to help me out too so we’ll be working as a team.

CRAZY.

So yeah I’m scared because it’s a whole new road but you know what?  It’s almost like I’m thinking I should be scared because it’s new but I really am not.

I HAVE HOPE.

That’s a wonderful thing.  It’s the first time I’ve felt positive all week to be honest.  It’s been one of those weeks…

Goodnight all.

May you all find some hope in your next day.  It’s out there.

I learned a new saying that helps me a lot:

H-hold

O-on

P-pain

E-ends

I believe this.  I hope you do too.

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“Your Body Has a Lot to Say…”

–said Dr. “D”, “…Don’t think about it as having problems and limitations.  I like to try to look at this way.  It’s more that your body just really likes to and wants to give out a lot of information about where it wants help.  It’s very open and willing for someone to listen to it.  It NEEDS help.  It’s asking for it.”–that’s pretty much what I remember the Chiropractor saying to me today at my first appointment as he did his first information intake about my body to test EVERYTHING POSSIBLE.  I had physical tests done that I’d never had done before and it showed me I had EVEN MORE “limitations” (or that’s how my perception is about me) and I was commenting about it sarcastically on the side with myself and him.

He really didn’t seem to see it that way.  It was the first time I had EVER been around ANY medical professional of any sort from all sides of medicine whether it be Western or Eastern or any type of medicine in-between, that he didn’t sigh out of distress about what he found out about my body.  He didn’t seem too stressed about it.  He was JUST taking in data…just looking at and observing what my body was COMMUNICATING to him.  That’s what it felt like.  It was DEFINITELY the first time ANYONE looked at my ridiculously crazy long medication list that actually has gotten shorter (but you’d never know it by glancing at it and especially as a new person to my body’s situation) and said “THIS IS AWESOME”!  Not kidding.  He was baffled at what I was on and what I was going through but he didn’t show he was baffled.  Just those words said it all.

So not only did he seem to observe my body on his level (if that makes any sense) as a body that might be able to benefit from his care BUT he also was funny, normal, seemed to have no ego whatsoever yet was quite confident with what he does and what he knows, he had me sit on a table and sat on a stool looking up at me yet I still felt like I wasn’t “below” him in any way or “above” him either, I didn’t feel too self-conscious when he had me stand so he could look at my posture or walk down the hall and back.  Plus when he asked me when I thought I was EVER at my ideal weight (didn’t say anything else about how much I weighed or that he was concerned about it or that I was overweight or that I needed to go on a diet OR ANYTHING OF THE SORT) I laughed and then he saw the perplexed look on my face and said, “When you were born?” and I said, “YES!  I think so.  I think I was at an ideal weight then.” He DIDN’T HAVE TO POINT OUT THE OBVIOUS WHEN IT WASN’T NECESSARY.

After all the data was gathered he said he’d go over all the information (he actually wanted to take some real time to look at it and not just jump on me at that point with some treatment plan of sorts without knowing what he was getting into) and he’d like to see me within 72 hours to go over the results so that we can decide together if we were a good fit and whether he would accept me as a patient or not.  I asked him what that meant (he even asked me if I had questions which is amazing.  I know to ask anyway but it was nice to be given that opportunity.) and he told me that sometimes it might mean he needs me to do some more diagnostic testing elsewhere, he may need to talk to my doctors first (he wants be a TEAM with them about EVERYTHING!–FINALLY SOMEONE WHO WANTS TO DO THAT.) or there may be some other reason but he wouldn’t know until he had a plan in place.  And then there was the factor of me agreeing to the treatment plan and then we could go from there.  It’s TEAMWORK on all sides I guess.

GO FIGURE.

We’re all in this together.

CRAZY IDEA.

So after hearing a dear friend of mine mention this “Dr. D (will call him that for now)” soooooo many times and tell me how great he was and what he’s done to help her and how much better she feels after seeing him I figured it was time to FINALLY check out how a Chiropractor could help me.  I had a Chiropractor on my list as a idea of treatment options to check out and since acupuncture is NOT covered right now by my insurance I thought it was time to try something new and it all fell into place.  Plus his office is NOT far away from my home so that helps A LOT.  BIG PLUS.

I see him Thursday.  My homework is to give him a list of my doctors (Ha!  I wonder if he’ll say “THIS IS AWESOME!” again when he sees how long the list is and what different kinds of specialists I have) with their contact information because he wants to be in contact with ALL of them (no way, crazy thought) and his homework is to assess me and all the information my body was apparently so willing to give out.

So from now on I’m going to try to keep the perspective in mind that it’s not that my body has limitations, it’s that it needs a lot of help and is willing to give out any information anyone needs if they are willing to listen.  It’s also willing to get the help if it can.  I am willing too so that helps.  We can all work together.

Definitely curious to see what happens…

Will do my best to keep you all posted as I can.

Right now it’s time to rest.  Being proactive is tiring…

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

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

ANYWAY…

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

DANCE!

MOVE MY BODY!

SHAKE IT OUT!

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

LIES!

WHATEVER!

DON’T PUT A LABEL ON IT!

JUST MOVE THAT BODY FOR GOODNESS SAKES!

LET OUT THE TOXINS!

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

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

How’d it feel?

You don’t know.  WELL MOVE SOME MORE.

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

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

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

OXYGEN ROCKS.

BREATHING ROCKS.

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

I KNOW!

I WENT ALL OUT TODAY and you know what?

IT HELPED ME SO MUCH!

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

AMAZING.

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

Oh and the best part is:

IT’S FUN!

I KNOW.  HEALTHY AND FUN.

CRAZY!

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

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

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

 

Now

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