Posts Tagged With: celebrate

THE OK POLICE

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

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

YES, A FULL YEAR!

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

I JUST COULDN’T HIDE IT!

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

I HAD TO SHARE THIS WITH YOU ALL!

TIME TO CELEBRATE!

AND USE EXCLAMATION POINTS!

YAY!

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

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“And…I LOVE LOVE LOVE YOUR PURPLE HAIR!”

That’s what the really nice lady said at my Chiropractor’s office today as she pulled me into one of the  Treatment rooms.

It had been a really long wait at his office today because he celebrates Passover and had squished in a bunch of appointments earlier in the day so he could leave in the afternoon, so I had waited over an hour.  And what surprised me was that I didn’t get too stressed out about it.  I gotta bring my book more often because I bet this happens every once in awhile.  That’s all.  Otherwise, I tried to use it as chill out time.

Anyway, the incredibly spunky lady who works the front desk (I haven’t met her yet till now since this is only my 2nd treatment and I think this doctor has 2 women working for him and I’ve met the other one only) pulled me in the room and quietly said but with exclamation, “OK.  2 things…” and she gestured her 2 fingers up in the air to stress her point.  “The first thing before we get started…I’m so so so sorry for the wait today.  Our office is closing early because we are celebrating Passover so we are distracted (but don’t worry he won’t be distracted when he’s with you).” she said in a hushed voice.  And then she still so discreetly continued, “Plus as you know the traffic was awful due to all this stupid construction out there and it was hard to find a parking spot so all of our patients have been later today.” And she had a brief pause and said, “AND…” and I’m not kidding you, she starts almost flailing her arms up and down and hopping a little bit, “I LOVE LOVE LOVE YOUR PURPLE HAIR!  I LOVE IT!  I LOVE IT!  I LOVE IT!”.  So I’m starting to laugh out loud about her reaction to my hair because she caught me so off guard because she was so careful at first with what she was telling me and then she says, “I’m sorry.  I would’ve said it earlier and I’ve been DYING to tell you for over an hour but I didn’t want to single you out in front of the other patients and I wanted to stay quiet but since you’re in here now I can tell you.  I CAN HARDLY CONTAIN MYSELF!  YOUR HAIR IS SO AWESOME!”.

(Well OK then…)

There I am and I’m supposed to be having worked on relaxing (already know this after my first treatment) so that the doctor can work on looser muscles and joints if possible and she’s getting me all excited about my hair.  And so we had this lovely giggly conversation about how much she loved it and loved that I had the guts to have purple hair and how she could NEVER have purple hair in her world so she just applauds women all the time who just express themselves and let themselves be “WILD” as she almost yelled again…

“OK.  OK.  I have to calm down now so you can calm down or the doctor will be mad at me for getting you excited but then again he wants us to be warm and friendly to you and loving so this is what he gets.  Anyway, I love it.”

I thanked her a bunch and even after the treatment and she still pointed it out as I left.

What a hot ticket that lady is!  Can’t wait to see her again and more.  She seems like someone I need more of in my life.  I want her energy.

As for my 2nd Chiropractic Treatment, it was really great.  The doctor came in and said, “Hey Superstar!” and I said “Is that because I made it to my 2nd appointment?” (by the way, it’s hard to talk with your face down in those things on the table but anyway…) and he said, “Absolutely!” And we talked about how I was doing.  I told him all the improvements I had been feeling since just the first appointment and some of the symptoms I was having and we got started.  Wow.  He really does so much work on the body AND he makes me work too.  LOTS OF BREATHING.

LOTS OF BREATHING.

Apparently oxygen is GOOD FOR YOU.

And I nearly jumped off the table (not sure how since I was face down…) as he ground his hand into my foot because it was “Ow-ie” and yet it was a relief or I would’ve stopped him.  At one point I had this crazy fit of giggles, more like a BURST of giggles (my usual giggles times 10 at least) as he released something in my neck (one of the biggest issues right now in my body) and I told him I just had to laugh and he said, “DO IT!  LET IT OUT!  WHOOO!  YOU LET THAT OUT!  You deserve it.  You just undid a HUGE knot!  WE DID!  I feel it too.  I wanna laugh too!  THAT WAS AWESOME!” and so I did a burst of giggling (I have already heard some of the craziness that is coming out of these rooms with other patients while he’s treating them and it’s only been 2 times there so I must’ve also sounded pretty funny with my huge BURST and he was cracking up too).  It felt good to get it out and then just as fast as it came on, it left.  He said that would happen but with different emotions and to keep letting it out.

We did a bit more treatment, he had me drink some water to rest and regain my equilibrium and I was on my way.  I can tell this whole Chiropractic experience is gonna be quite a trip!  So much personality in that office.  Other doctors and their personnel could learn A LOT from these cool people.  WOW!

As for how I’m feeling a few hours afterwards, I’m definitely doing better than the first treatment.  My body isn’t in as much “SHOCK” as it was the first time.  It kinda gets it now.  Who knows what’s next.  For right now I’ll take whatever I can get for relief.

RELIEF.

I like that word.

Definitely feeling pretty even with my emotions and my body right now too.  I’ll take it as long as I can.

I have my next chiropractic treatment Thursday.  Can’t even imagine what’s in store!

 

 

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