Posts Tagged With: symptoms

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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325 DAYS I’VE BEEN GRATEFUL TO TAKE A WALK

-GRATEFUL to be able to move my legs.

-GRATEFUL to be able to stand up.

-GRATEFUL to be able to put one foot in front of the other.

-GRATEFUL to still be able to walk on my own with no assistive device.

-GRATEFUL to have taken a walk 325 days in a row as of TODAY!!!

Ten years ago today if you had asked me if I thought with multiple sclerosis I’d be able to walk today, I would’ve been afraid to even think of an answer. It was way too far ahead to even comprehend. Yet I’ve lived my life since my diagnosis of MS in 2002 as if one day I might not be able to walk…or I might not be able to walk as well…or I’d have an exacerbation of symptoms and I’d lose movement in my legs…or I’d be using a cane…or I’d have to use a walker…or I’d have to use a wheelchair…or that the MS would progress making it harder and harder to move my body all over.

Then there’s lupus that just had to make its way into the picture because I didn’t have enough to think about and that can also affect my walking. The joints can get very stiff, swollen and in pain and I hobble around sometimes. The fatigue with both can drive me crazy.

I know people with MS who have a hard time with their legs and are in need of assistive devices. I know people with MS who used to be in a wheelchair but aren’t now. I know people with MS who don’t have any problem walking at all. I am getting to know people with lupus who have similar issues. I myself have a problem with balance at times, I get the foot drop, my feet can give way under me and I can fall (hasn’t happen in awhile), I trip quite a bit, I’m clumsy, I have stiffness, pain and spasticity in my muscles in my legs that come and go. I have ankles that like to roll and that’s not necessarily from lupus. That can just happen. I can often feel like my legs just aren’t strong enough to go down hills so I’ll ask Corey for his arm just so I can feel more stable and not as wobbly. (That hasn’t happened as much since I’ve been walking every day.)

So EVERY DAY in the beginning of all of this crap, I used to wake up in FEAR that my body or at least some part of my body would not be able to move.

EVERY.

DAY.

Then as time has passed I’ve found myself often taking it for granted that I can even walk at all. That I get a chance to walk on my own two feet and take a stroll EVERY DAY is a miracle.

EVERY.

DAY.

I am blessed with the chance to STILL get up every day and be able to move my legs enough to WALK even for 5 minutes. That’s all it takes to take a walk. The POINT IS TO MOVE MY LEGS. I get to walk on my own still. I don’t know if that will ever change and I’ll admit I still have that FEAR cloud lingering over me like a veil it seems but it is just there because ANYTHING CAN HAPPEN AT ANY TIME TO ANYONE BUT NOW WITH MS AND LUPUS I HAVE AN INCREASED CHANCE OF VERY “UNFRIENDLY” (a friend used this word about her physical symptoms and I hope she doesn’t mind that I stole it), symptoms occurring that can be debilitating to my body and not only can they be debilitating BUT I will have NO IDEA whether I’ll be able to get that part of me back or not. AND I HAVE NO IDEA OR WHEN THE NEXT ATTACK/FLARE WILL HIT OR IF IT EVER WILL… Only time tells that part.

So at this point, as long as I can I will…

WALK.

AND WALK.

AND WALK.

IT HELPS SO MUCH. My legs have improved greatly.

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

WHAT A GIFT.

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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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Victory!: Cambria!

We’re home.  We’re back from Cambria, CA!

We had a wonderful, peaceful, soothing, gentle and adventurous time!  It was so good to get away for a couple of days with Corey and spend some time together–just us.  It has been years since we have been able to do that and I am sooooo happy we did it.

WE REALLY DID IT!

My lupus and multiple sclerosis behaved for the most part.  I had some weird symptoms showing up here and there but for the most part I think I felt better because I was so relaxed and distracted.  My walking every day has really helped in the long run when it comes to my ability to walk around and explore new places and my ability to stand for long periods of time.  I do still get store fatigue but I could stand quite a bit and what was interesting was that the sun didn’t bother me too much until the later afternoon.  The temperature was definitely cooler than LA especially at night but even during the day the temperature might have gone to 60.  Glad I was given a chance to be in cooler temperatures because it sounds like LA is going to get hot over this next week or so.  Blech.  But first things first and one day at a time I’ll make it there.

There was a jacuzzi spa jet tub in the room so that helped my body immensely.  I think if I had one of these I could get into every day my MS and lupus would be very happy.  I’d be getting that massage I needed daily.  Oh well.  One day.  I can dream.  We were also able to get massages before we left to drive home which were lovely.  There was a boarded walkway from our hotel, through the trees and towards the beach.  Wow!  What an amazing walk and sunset that was.  I tell ya.  There’s nothing like hearing frogs and ocean waves at the same time.  I don’t think I’ve ever experienced that.  And the sunset was magical.

The people there seem happy and are incredibly friendly.  We had a conversation with each local we met.  They were so welcoming.  I think perhaps it may have been partly because the economy has been way down since last November but I also really believe that this is how they are in general.

I have lots and lots of pictures to share with you soon once I get them loaded.  This trip came at THE PERFECT time…as my life is hitting the next turning point…there is no mistake we took this trip when we did.

And to finish, I’ll say that years ago we headed north from LA to San Simeon to see Hearst Castle and that was neat.  Hearst Castle is quite an experience.  What a view from up there.  That night we traveled a bit south to see what was going on in Cambria since it seemed like there was nothing happening in San Simeon.  It was dark and the businesses were only open for a few more hours.  Those few hours made a great impact on our lives and we knew we had to come back someday.  Well that someday came this past weekend and after being there for less than 48 hours I can honestly say it has now made an imprint on my soul.  May sound hokey but I believe it’s true.  Actually, I know it’s true.  What a beautiful, spiritual and peaceful place.

UH OH!  I HAVE BEEN BITTEN BY THE CAMBRIA BUG!

I can think of worse things…can’t you?

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It’s So Hard to Have Multiple Sclerosis and Lupus and…Part 3

…and BE ME…

…and HAVE LIMITS…

I mean, let’s face it.  I’m a hard person to be.  I have goals.  I have ambitions.  I am a Go-Getter.  I am a Type A Personality by Instinct. The first idea in my head is GOGOGOGOGOGOGOGOGO!!!!

There’s no room for LIMITS…

Hmmmmmmm……

Welllll……

That’s really hard to deal with when I have multiple sclerosis and lupus.  I’m not even mentioning the digestive symptoms and syndromes, food allergies, environmental allergies, any infections that I might be fighting off, the fun womanly once a month irritations, sinus symptoms and issues, my crazy GOGOGOGOGOGOGO head, or even headaches that might come and go here and there.  I mean really.  I don’t get a chance to GOGOGOGOGOGO.  And if I do by chance get back into that habit, I am in TROUBLE and back on my butt FEELING AWFUL FOR SOME REASON…

UGH…

Sure that’s probably a really good thing.  Actually, it’s a blessing that I am grateful for quite often.  I’m grateful that I have to take it slower and actually see my life go by.  I don’t get a chance to be sprint through it.  I get an opportunity to get to know myself (scary sometimes yet really nice to do), to get to know others out there in the world who are cashiers and other customers for example, to smell the flowers, to really take care of my plants, to love on my dearest Cleo Kitty, to sit and just BE (so hard sometimes), to take my time, to look at the sky, to watch the world, to take a few extra breaths and maybe even DEEP BREATHS here and there…

BUT I WANT THE CHOICE to GOOOGOOOOGOOOO…or Do I?

I really have no idea.

I just don’t like having multiple sclerosis and lupus.  That’s just it.  I can’t stand them.  I want them to go away.  If I’m not careful I get sucked into a black hole of “Why me?” and “What did I do to deserve this?” and “Why won’t they just leave me alone?” and the list goes on and on…I think I could go on forever in what I call “WHOAISMS” and sometimes I believe I’m allowed to do that.  But I hope I have something to pull me out and I usually do.

So then I need to really work on spirituality whatever that means to me that day.  I could be meditating.  I could be actually letting myself sleep if my body and schedule allows.  I could be looking at the flowers.  I could be beating on my Bongos.  LOVE THAT by the way!  Seriously, if you have anger, I suggest you find something to beat on as long as it’s not yourself, or another living being, or something you’re going to damage—hmm….maybe I shouldn’t have mentioned to find just anything to beat on.  For a long time I’ve used the Hulk Hands that are out in toy stores that Corey has bought me (the first pair really was the best) that actually had Hulk’s voice and yelled, “Hulk Smash!” and would growl so when I put them on I got to laugh and feel big and strong and punch the wall.  I don’t recommend punching a wall without that kind of cushion.  PLEASE BE CAREFUL WHATEVER YOU DO.

But then now I have these Bongos and that’s great but I can’t just jump in and do a long set of banging.  I have to pace myself and only do it a few minutes at a time and build up to longer because then my hands and arms hurt.  Well, that’s just great.

So that’s what I mean, I’m always putting limits on myself and what I can do but in TRUTH: THERE REALLY ACTUALLY ARE LIMITS.  I’d like to continue to be able to use my hands and arms which are the most affected by both my lupus and MS and I’d also like to not feel the pain and throbbing from having overused them…on the bongos that I just enjoyed banging on to help me relax and calm down…

Then there’s the exercise.  Exercise is great to keep me flexible and stable.  Yay.  Go me.  Notice I’m not too excited about it.  Some days it feels like real work and like my body is complaining the ENTIRE TIME.  Then other days my body is thrilled and wants to be stretched and moved even more.  But again, there are actual limits if I want to keep functioning.  It is cumulative.  However, WALKING HAS BECOME MY THING.  I am well on my way to having walked 300 days in a row by the end of February.  AND THERE IS A LIMIT TO THAT.  I need to NOT JUDGE myself about walking and what I did that day.  I need to not push myself to walk an hour every day.  I need to be willing to only even walk a few minutes if that’s all I can do.  The TRUE BENEFIT comes out of keeping my legs and body moving and honestly, it’s helped my mind immensely too.  I have so much more confidence now than I used to in general just because of walking but they have truly loosened up and become more stable, strong and can endure more.  They DON’T complain that often anymore.  And by now it’s become such a habit to take a walk that I can’t imagine my life without it.

But then there’s trying to have a life.  I know.  Crazy.

A LIFE.

You know, that life where I can socialize with people, maybe even have some real friends out here in LA, maybe even keep in touch with the friends and family at a distance, spend more time with my husband, get out into the world and do things besides grocery shopping (although that is important too), and doctor appointments, and medical tests and be on the phone with something regarding Disability, Medical Insurance, following up with doctors, finding an attorney for a legal issue, filling out paperwork and the list goes on.  And what about being creative?  I yearn to be creative but I can’t do too much OR I have to slow down and my body asks for it.  But when will that happen?

WHEN AM I DOING TOO MUCH?  WHEN IS IT WORTH IT TO PUSH IT?  WHERE IS THE LINE?

There is no pattern or predictability.

Again, the worst part about these diseases is the UNPREDICTABILITY.

For goodness sakes, if only they were PREDICTABLE.  What a different world it would be.  I might be able to make plans and keep them.  I might be able to sign up to take regular hobby classes or regular ANYTHINGS.

I mean, let’s not forget it takes me at least 4 hours to get ready in the morning if I’ve included waking up, stretching my body in bed to get it moving again (tends to get stuck and stiff from sleeping if I’ve slept that is), do more stretches to stand up, follow a spiritual way of life (numerous ways to do that and I try to be creative with that), probably go to the bathroom (I know TMI), take a few pills, feed and be with my Cleo Kitty who has health issues of her own and is desperate to eat by 7am or ELSE, try to wake up a bit more before eating and taking more meds, plan out my day, get stuff ready to go if I have a medical appointment and I usually have at least one a week (the next 3 weeks I have 2 each week–goody gumdrops for me), pull myself together meaning exercise to the best of my ability to wake up my body, take a shower which is an event in itself and can take a lot out of me, not to mention brushing my teeth (an electric toothbrush is best so I can save my hands and arms and their energy), get dressed, try to make my hair look presentable (thank goodness for purple short hair so it’s already kinda cool and easy), pet and love my Cleo Kitty who always needs extra love and well so do I, make sure I wear my hat to protect from the sun, wear my sun protective jacket or at least a shirt with longer sleeves, get Cleo ready for me to be gone, make some sort of business calls if I have the chance, try to sit and rest here and there because it’s a lot to ask my body since so much activity has already happened, try to maybe wash the dishes or at least some of them, sort through any weird symptoms I’m having and do my best to take care of them, and the list can still go on.

THAT’S JUST THE MORNING EVENTS…no matter what even if I’m feeling crazy fatigue–I may go back to bed but what if I can’t because I have an appointment?  I’ve gotta get through it.  I’m so exhausted from thinking about my morning and writing about it that I haven’t even written the next parts of the day where I have to keep myself in check and have all my meds sorted out to take and make sure I take them on time and have meals at good times or I end up feeling worse.

And there’s always laundry to be done.  Can I do it today?  Should it wait?  What if we need underwear?  (Hey, I’m being honest).  And what about groceries?  What about the “What abouts”?

What’s the real priority?  There’s always some sort of life that needs to get done and if I let it go it’s still there tomorrow and I have to try to be ok with not getting it done YET.  I’ll admit, that is one of my biggest struggles.  LETTING SOMETHING GO UNTIL TOMORROW…OR ANOTHER DAY…OR ANOTHER DAY…

YET SOME THINGS CAN’T WAIT…

I’VE LEARNED TO LET GO OF A LOT BUT THAT DOES NOT MEAN I’M OK WITH IT.

So life just keeps on happening.  I keep having multiple sclerosis and lupus along with all the other syndromes and issues and the world keeps spinning.  Thank goodness for choices but it’s still so hard sometimes.  I really have eased up on so much in my life and with my expectations but it takes a strict way of thinking that I really can’t get lazy with too much (sometimes it’s a wonderful thing but I can’t let go of it too long or I lose myself again and may go back to pushing too hard)…

SO I GUESS I’M STILL LEARNING…

THESE CHRONIC ILLNESSES I TELL YA…

There is just so much I can say about them and so much I don’t have the words or energy to talk about.

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I GOT OUT!

I did I did! I got out, had lunch with a friend and I didn’t have to cancel! Yippee!!!!

Yes it was 100 degrees today and yes my MS was still upset with crazy heat fatigue, BUT other symptoms seemed to have calmed down. I was able to get up earlier and stay up, pull myself together, get out into the hot car and hot sun and make it to lunch!

The lunch was yummy at BJ’s Restaurant and Brewery (and the tables were freezing–never had that before), the conversation was fun and the friend was so easy to talk to and be with (as usual–you know who you are wink wink). It was lovely! We ate from the lunch specials and got to save some money, we dealt with an overeager and very bored waitress (who hounded us about what we were going to order and did we have any questions and and and and…she was really like that), I had a refreshing berry limeade drink thingie and then we walked around the mall right next to the restaurant. The mall was quiet and relaxed, we overwhelmed our noses with fragrant fall candles at Bath and Body Works (some crappy–I swear a whole table was set up just with crappy ones….some wonderful–I swear a whole table was set up with wonderfully accurate fragrances of fall like “leaves”), looked at shiny things, giggled about gummy bear shaped earrings (totally cute) and about how the ’80s are so back in style with fashion accessories (can you say Madonna gloves from “Like a Virgin”?) and gabbed, gabbed and gabbed.

Then sadly she had to leave. I’m not sure where the time went. I stayed at the mall and walked around some more, poking, looking and trying oh so hard not to buy anything. I was a good girl. I didn’t buy one item. It was hard. Some of the sales were really great. Then again, it was so hot I doubt I’d be able to be comfortable trying on clothes anyway so it worked out. Before I left, I sat for a bit and just took in the ambiance. I haven’t had that much fun in a mall in a long time.

It was so nice to get out, see my friend and to be able to do ANYTHING in this dang heat. Sure, I’ll need to recover now but my mind/soul are happier. And my Neurologist would be thrilled to find out that I had some fun. His orders a couple of months ago were to have more fun. OK. I did.

And now I need to make my Rheumatologist happy and get some rest.

My body will be happy with that idea too.

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2 YEARS AND 2 DAYS!

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

Go me!

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

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

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

AND…

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

And so I leave you with this:

THANK YOU FOR BEING YOU BECAUSE YOU HELP ME BE ME!!

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