Posts Tagged With: weakness

THE OK POLICE

Posted on September 29, 2013 by Nahleen

It’s time for a confession:

I haven’t written in awhile. It looks like it’s been over 2 months. The truth is, I’ve been watching my back. I’ve been keeping an eye on happenings around me. I’ve been looking over my shoulder even more. I feel like my last post revealed something illegal.

It feels ILLEGAL to say “I’m OK”.

WHAT????

To be honest, I have been waiting for the “OK Police” to track me down, to find me. Clearly if I have put in writing that “I’m OK” then I’ll be found out. How dare I have MS, lupus, IBS and all kinds of other issues and be OK? What am I thinking? Clearly then I should be working and living that “normal” life right?

I MUST be ready for a job. I MUST be ready to add that chaos back into my life. I MUST feel well enough to work.

Something happened in April of this year that I have yet to write about here because to be honest I’m still not ready to get into too many details. What I will say is that an entity who shall remain nameless stopped helping me financially and my legal counsel advised me that it was because by writing a Blog and being “able to write” then CLEARLY I can WORK.

OBVIOUSLY.

OH WHAT A FANTASY. I WISH IT WAS THAT EASY.

Or maybe it is right? Well let’s see what I can do in the morning if I were to go to work right now? I can get up early in the morning, stretch my body in the bed before I even get up because due to my MS and lupus my body has stiffened through the night, I can try to do some spiritual routines to help me have hope to get through even the next hour, I can shower which ALWAYS feels like an EVENT, I can put on all the creams and do all the Dermatologist ordered regimens in order to protect myself against sun sensitivity due to my lupus, I can feed my Cleo Kitty, I can think through my fog-addled brain that includes a regular feeling of tired along with MS fog and lupus fog, I can make my breakfast, I can take all my vitamins and medications, I can pull together a lunch for the day, oh yeah and how could I forget putting on clothes which can wear me out, I can put my shoes on with hands that are probably achy and stiff due to MS and lupus, I can do my stretches that usually now take 2 hours to do that have been provided to me by my Chriropractor, my Physical Therapist and those I have learned over the years, I can brush my teeth that requires movement of my hands and arms, I can go to the bathroom which is probably TMI and obvious to some but that depends on the ingredients of this experience, I can find my keys which even to normal people is hard to do, I can be sure to wear my sun protective jacket or shirt AGAIN because of my lupus sun sensitivity issues, I can put my hat on my head and flatten anything that might have looked like a PASSABLE hair do, I can grab my bags and hope I can even carry them, not to mention just dragging and pushing through all my symptoms I might be having for the day like FATIGUE which is a huge issue for me, stiffness as mentioned a bit before, weakness, balance issues, aches and pains, the itchies, HEAT FATIGUE which is separate from regular fatigue and is still playing a bit part of my life here in LA even as October looms, SUN FATIGUE where yes even the UV rays sneak through the CLOSED window blinds and can affect my lupus, dry mouth, dry eyes, numbness, tingling, nausea, constipation, and all the other digestive icky stuff and I could go on and on about symptoms, and THEN I can hopefully remember what I need to bring and actually bring it (Memory is also a serious issue and symptom), go into the hallways into different UV rays and temperature, lock the door if I can remember to, go into the elevator, deal with the fluorescent lights that could also affect my lupus due to the UV rays that blare from these awful lights, ride the elevator and hope I don’t get dizzy (another symptom) from movement, all the while hoping I can stand this whole time if my legs will let me, walk to my car, unlock it and put the stuff in my car and then get into the other side of the car…….AND is anyone else tired?  I mean, I haven’t even left the apartment building yet.

AND THAT IS JUST THE MORNING.

I’m exhausted just thinking about it. This is what I go through every morning if I have a morning doctor appointment to go to. This is what so many of us do. Have you all realized what you do in the morning? JUST the morning? It’s a wonder we can do anything EVER.

AND YET, I’M WORRIED ABOUT THE “OK POLICE”. That I might get “found out”.

I mean, Gawd forbid I say I’m OK. It’s as if the Disability Police are going to come and tackle me and say they “caught me”. That I’m going to admonished for being “OK”.

What is OK? Well, that is a very broad term for all of us. Yet some people and entities who shall not be named choose to think it must mean all is right with me or you or whomever it the subject of those 2 LETTERS.

2 LETTERS can implicate you. 2 LETTERS have the power to make me feel guilty. To make me feel guilty about what????? I have friggin’ MS and lupus! It’s a miracle to even think I could be the LETTERS “O” and “K”. Seems to me, those that think I can do more than I do should feel guilty if anyone.

Come on now. Sure, a lot of this is in my own head. But where did it come from? It came from a society that believes that we have to keep going and going and we’re NOTHING if we don’t keep going and we must be “LAZY” (if we stop and smell the roses for goodness sakes–needless to say I really don’t like that word because there is such a negative connotation to it) and that we have to accomplish the world and yet that’s never good enough is it? We live in a world that judges based on words, based on outward appearances when so much of what we ALL go through is invisible to the eye. So we live in a life of constant stress don’t we?

WHY?

Why are we so concerned with what others are doing?  Why do we decide it’s wrong? Why do I think I’m wrong for being “OK”? Why can’t I celebrate it?????

For so long I have struggled. For so long I have felt CRAPPY. For so long something was wrong.

So why be so worried about the “OK Police”? Why can’t I just live my life? Why on earth do I have to be punished for feeling a bit better?

BETTER.

Now there’s a wide open word for ya. Oh my goodness! She said she’s better so it must mean that all bad and uncomfortable things have come to an end. I have news for everyone who thinks these things and all entities who use that word to stop taking care of someone who actually deserves the help (YES I SAID DESERVES THE HELP)! Guess what???? BETTER DOES NOT MEAN THAT I AM ALL BETTER AND I AM READY TO STEP BACK INTO THE WORLD AND WORK MY BUTT OFF NOT JUST ON TAKING CARE OF ME BUT ALSO TO WORK 40 HOURS A WEEK AND WORK AT LEAST THE EQUIVALENT OF MY PAST JOB AND WORK UP TO 50 (YES I SAID 50) MILES AWAY FROM WHERE I LIVE! And yes I am yelling.

Better means there is improvement. It means that I don’t feel so absolutely miserable that I don’t know how I can make it another day. And no that has nothing to do with ending my life. It means what I just said. It means that maybe, just maybe I can eat more than toast. It means that I might even be able to write a bit. It means I might be able to take a shower without wearing myself out.

OH NO! I’m writing a Blog! A Blog! I can clearly work right?

WRONG. Since I’ve been writing this post today my hands and arms have been throbbing a bit but I am determined to write it. I will not keep it all in and be quiet and stuffed into a dark corner where no one even has to know I exist. I have news for you. I do exist. I have a name and I have a life and I am not less than. I deserve to be heard. I have so much that I could feel crappy about. I have so much reason to think no one wants to hear me or see what I write. Those are delusions however. I will FEEL this afterwards. I won’t be able to wash the dishes by hand because we have no dishwasher and it’s the only way to get them clean. I won’t be able to think clearly for awhile because I’ve used so much of my mind energy to write and focus on this that is also so fulfilling.  I won’t be able to do the 4 loads of laundry even with my husband’s help because I’ll need to rest. I also won’t be able to focus on the bills that need to be done. Yes, I even do bills. I struggle through them cognitively (I deal with a hard time concentrating quite often due to MS symptoms.)

Oh sorry. Should I have even mentioned that I can sometimes do dishes and sometimes even do laundry with help? Or that I do bills? Yes, even those of us who are disabled have bills to pay. Lots of them. We may not have a lot of money to pay for them though. Heck, we might even have more due to health insurance and other medical expenses that drive us out of our minds. Or maybe I shouldn’t be writing this because then it will look like I can work. Again, I’d be expressing myself too which might be bad.

My awesome Chiropractor, or Holistic Healing Coach as I like to call him, ordered me to celebrate me feeling better and turning a new corner to improved healing. He said I should shout it out. I still cowered a bit when he said that and he noticed it right away. “Why are you sinking a bit?”, he asked me. I had to tell him I felt guilty. “Guilty? Why? Embrace it! Don’t let anyone make you think otherwise, especially you.” I’m trying Dr. D I’m trying.

Isn’t that the whole point? Shouldn’t I be encouraged to take the time I need to be getting the help I need even financially that by the way is not mooching from the system? Shouldn’t it be OK to see me out and about? (There’s those 2 letters. Uh oh.) Shouldn’t I be cheered on to keep doing what I need to do so I can become even more of an “accepted” member of society? Here’s an idea. Perhaps if I keep doing what I need to do to heal and recover I can go back to working because yes, I do want to be working. Sure I don’t think I can ever go back to doing what I was doing or being in that kind of environment again. It was too chaotic. It was just too much for me. That’s OK. (those 2 letters just keep sneaking up on me). But I’d really like to help people in some way. That would be neat. Maybe there’s a future career in that for me.

So today I declare that I shall not let my own mind become the “OK POLICE”! I shall not let the thoughts, attitudes and feelings of others affect how I live my life. (Oh wow. This might be too much to ask for at once.) I shall not let others get me down.

I SHALL RISE UP!

Perhaps maybe even one day in the near future I’ll be better than “OK”. How cool would that be?

But I have news for everyone who thinks that I should be able to jump into the life of a “working” person. Actually, this brings me to a new tangent. Just writing that line has sidetracked me. I’m going to keep these thoughts in this order for you all to read because sometimes stream of consciousness is so important to help us understand each other. Here’s a thought:

I AM A WORKING PERSON ALREADY.

My JOB is to keep taking care of myself. Do you know how hard that is? How good are you at taking real care of yourself? It is much more than a full time job! Heck, I need an assistant just to help take care of ME. I DO WORK. I still go to AT LEAST one doctor appointment a week. I still have to chase down my medications and supplements. I still have to try to eat healthy. I still have to exercise. I still have to make sure I get enough rest because gosh darn it life is tiring and then adding multiple sclerosis and lupus on top of it magnifies it a gazillion times more.

IT’S WORK.

ANYWAY…back to having “news for everyone who thinks that I should be able to jump into life of a ‘working’ person” as mentioned above before my tangent. MS and lupus are no joke. They are not CHOSEN as part of my life path. They are DISEASES. They literally cause way too much “Dis-Ease”. They are always making me feel something uncomfortable. Yes, I am STILL always feeling a symptom. There has not been a break in years. Over 10 years AT LEAST. And they can get worse and flare up WITH NO NOTICE. They are completely unpredictable.

SO NO. I’m not OK enough to work just yet. I’m not sure I will ever be. This doesn’t make me feel so good about myself sometimes. It’s one of the hardest realities to ever have to live with.

WHY? Maybe we’re not all supposed to be members of the Rat Race. There are so many other ways to live our lives as part of humanity. If we all did the same thing we wouldn’t get anywhere.

So you know what, “OK Police”, try it. Try to tackle me and then what? Because here’s the thing. YOU ARE NOT GOING TO CURE MY MS AND LUPUS. THEY ARE ALWAYS GOING TO BE THERE.

And it is OK (I say this proudly now) for me to be OK. It is OK for me to need your help if I asked for it. It is NOT OK for you not to help me if you are judging all I do on what you read on a screen. (I am sending this message along to an entity who judged me by my writing.) And while I continue along this path of OK-ness I’d really like it if you would at least join me before judging. We can walk together. We don’t have to stand next to each other especially because I’ll still be working on even being “OK” with you being on my path but I’d really like it if you’d try to UNDERSTAND me first before PUSHING ME DOWN and doing your best to make me INVISIBLE.

And to tell the truth to my own mind, since this really is just one big discussion with my insecure sensitive mind, it’s been 2 months since I wrote that lost Blog post about how “I’m OK” and not once have I even caught a glimpse of the “OK Police”. I can let it go now. I can at least try to.

AND I WILL CELEBRATE AND EMBRACE THE FACT THAT I AM GETTING BETTER! Sure it’s not the better I want but it is still Progress. It doesn’t have to be Perfect (dang it), but it’s in the right direction. I deserve a good quality of life just like everyone else. And I am really starting to feel it.

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Diagnosis Part 5: MRI

Posted on July 21, 2013 by Nahleen

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

Posted on July 1, 2013 by Nahleen

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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Telling the Truth is Really Hard

Posted on March 27, 2013 by Nahleen

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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I HAVE A CRUSH ON ACUPUNCTURE!

Posted on May 24, 2012 by Nahleen

I have to come clean.  I have a crush on acupuncture.  I LOVE IT!!!!!!  I can’t get enough of it!  I had an appointment today and my body is thanking me for taking the time to help.

It all started a little over 5 years ago when I finally took that long awaited leap into the well of Eastern Medicine.  I had heard rumors since I’d been diagnosed with multiple sclerosis at the time that acupuncture really helped.  To be honest with you I was scared.  I also had been taking an injectable  medication for my MS every other day for those 5 years and the last thing I wanted to do was add more needles to the mix.

Then a co-worker of mine just wouldn’t STOP talking about this acupuncture treatment she was getting from this really nice lady in Beverly Hills, CA and how I should try it sometime.  Well my goodness, I think I kinda went just to shush her up about it and it was absolutely THE BEST decision I have ever made about anything having to do with my overall health and well-being and it changed my life!!!

Not only is the acupuncture amazing but the acupuncturist is one of the nicest, most compassionate people I have ever met.  She sat there with me for two hours that first night and helped me learn all about me.  I was blown away.  She knew more about me than I did about myself.  She was able to pull diagnoses out of my mouth that I hadn’t even brought up to her yet.  I was thoroughly baffled.  And you know, to this day, she is able to pick up on things about my body that my other doctors haven’t even come close to considering.  She was the one who wondered if I had lupus, or what else could be going on besides MS.  She was the one who wanted to know what was going on with my digestion and thought it should get examined and the answer was a small intestine bacterial infection.  The list of her conclusions about me are endless.

That night I had my first treatment and there is no turning back.  She said my prominent issue was that I carried heat and have too much dampness in me.  I knew about the heat.  I didn’t tell her that I was always hot.  She could tell.  She said my skin felt like it was burning.  I didn’t know about the dampness but it explained why I have a hard time with the rain and with humidity.  So after she put the needles in my body she asked me how I was, put on some relaxing music, gave me an eye pillow and left the room.

I had the most profound experience.  I thought I was always going to have to be stiflingly boiling hot.  Within minutes it was like the dam broke and my walls started breaking down within me and the flood gates of cold started rushing through my body and I specifically remember the cold feeling started on my lower right leg and worked its way toward my head and over to the other side.  I thought someone had turned on the air conditioner or put a fan on me.  Nope.  That was acupuncture and that was only the beginning.  The feeling of RELIEF was an absolute miracle.  I didn’t know I could feel “better” like that.  I’m getting emotional just thinking about it still.

The other symptoms she has been able to help are fatigue, stress, hormonal, allergies, asthmatic issues, pain, stiffness, weakness, digestion, sore throat, sinus issues, upper respiratory infections and she has helped me find relief with my overall feeling of malaise.  The only time we hit a wall with my treatment was almost 2 years ago when I had my major lupus flare and we didn’t know I had lupus at the time and she really needed my doctors to help find the diagnosis in order to give me the best benefits.  She told me she thought she was flying blind.  Once she found out the diagnosis (lupus is one of the hardest diseases to diagnose) the treatments greatly improved again and I have been feeling even better ever since.

I have had a crush on acupuncture from then on.  After she and I agreed that I would benefit from acupuncture, she asked me if I wanted try acupressure and I took the next leap of faith.  Sure why not?  WOW.  That was amazing too.  My main flame of love starts with acupuncture and then follows to acupressure because for me I don’t get as much benefit with just the acupressure.  My treatment really needs to start with acupuncture and then go right to acupressure.

It is AMAZING!  I really feel like I have a crush.  I get all giddy thinking about having the appointments/treatments and I can’t wait to feel some relief.  My body is always active with some sort of autoimmune disease running rampant and it needs a “Pause and Calm Down” outlet.

Acupuncture has been the answer for me and I plan on continuing for as long as possible.

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