Fibro Hell…..

Fibro Hell

So very sorry that it has been so long since my last posting.  This one will be short.  I have been living in fibro hell and I don’t know when I’ll be up to full posting…. there is so, so much I need to say but am too tired to even start and I know once I start it will all come pouring out of me and overwhelm me…. I’ll start to cry and won’t be able to breathe through my nose and that will make using my oxygen hard …not a good thing…don’t need any more dain bramage than I already have…if I start like I siad I’ll not be able to stop. The pain both physical and emotional is just too strong right now. So please forgive me and don’t give up on me as I will come back and do what I know I MUST do….get it all out of me and then move on and maybe what I’ve gone through once recorded might be of help to some one else, as that has to be the reason I am here and going through these trials…there must be a worthy reason for the suffering…it can’t be for nought…. I’ll be on my journy…my walk through hell and back.  May you be at peace until our paths cross again…… Lila

PLEASE NOTE IF YOU ARE READING THIS AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN  STOLEN AND IS BEING USED WITH OUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS http://lilabyrdakabirdladybyday.wordpress.com 

Random Ramblings From The Depths Of The Fibro Fog…

"Seek and you will find." by Lila Byrd

           “I knelt in the forest to pray for I was lost and alone. 

My spirit swelled and I felt His light and I was found….”   by Lila Byrd

          Over the years I have lived with the jumble of mixed matched illness and symptoms, I have had to fight

one battle after the other to have the right treatments for me medically, emotionally and spiritually.  I have

found that people can selflessly give an abundance of compassion, understanding and assistance.  Those are

the times that I try to cherish and hold onto during the not so great other times, for there are others that are

not so kind and take pleasure in causing more pain.  I try to keep those as far and few between as I can.  It can

be sort of hard to do when that hard-nosed, judgemental and stinkin’ thinkin’ person is none other than …ME …

I’ve lived this way for so long and have my cycles of ups and downs.  I’m sure others do too…. I’m not

special.  I get all caught up in what ever is going on and lose myself…..get everything out of balance which

doesn’t take much when you live with chronic illness or a handful of them nasty little pests.  I so love the

out-of-doors and any time I felt stressed that was where I would end up….I could be still and let the natural

world absorb me and I would drink it in….really I could lay down on the ground and look up and feel that

I was wrapped up in an embrace from all that was natural and growing.  I could refill my spiritual cup.  I

could cry out how lost or alone inside and feel, really feel that swelling in my chest and the tears would  be

a comfort and not a sorrowful loss.  I haven’t been able to feel that embrace in so long now due to my health.

I deeply feel that loss, but I know in my heart of hearts that I can wander in my fog and if I seek, truly seek

my cup will be refilled…..it’s just harder now but not impossable…..I’ll see the warm rays of heavenly lights

parting the fog…..if you too are lost in a fog looking for that beautiful ray of light know you are not alone…

keep in mind that the warm rays of light from above will comfort you until our paths cross again….. Lila

 

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE  “LILA LOST IN THE FIBRO FOG….”  THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITHOUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS   http://www.lilabyrdakabirdladybyday.wordpress.com 

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JUST A BIT OF TWISTED FIBRO HUMOR…

 

 

          Gosh I just don’t know when I’ll start to feel any better.   

I think this new medication regimen is part if not all the reason 

I feel so run down.  My hair is starting to come out and I cut my 

hand while cutting up a lemon…. all I wanted was just a few cups 

of hot tea with lemon to quiet my stomach down. Now that cut is 

on the slow side to heal.  I take another round of three doses 12 hours  

apart in the am.  I am starting to question taking a chemo drug to  

treat of my autoimmune illnesses. 

          It looks like my itty bitty sarcastically silly kitties are having  

an itty bit of fun at my expense…..yeah just laugh it up now…. 

later dem itty bitty fibro kitties just might want their ears a good 

scratchin’ and then we’ll just see how funny they feel then! 

          I wish one and all of those out there with their own itty bitty  

fibro kitty to pick them up and give ‘em a hug….. cause no  

matter what their mood had been need a hug too and enjoy 

their purrrrrringgg until our paths cross again…… Lila 

   

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEBSITE “LILA LOST IN THE FIBRO FOG ….” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS  http://www.lilabyrdakabirdladybyday.wordpress.com   

   

  

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MAKING PEACE WITH THE FOG…..

 

            It seems like it has been forever since my last post and by looking

at my last post date I guess it has been forever!  I have trudged through

 the fibro fog until I felt so lost and worn down.  Thinking what have I

got left to say and who really cares even if I did?  I’m plain worn out! 

And I can’t think straight and even if I did….wait….I think I already

said something like that about three or four times and deleted it….

blast, it must mean something so I’ll leave it in and maybe can move

 on…..lol…. I’m more forgetful of late and this is causing a few

 problems around home. Forgetting to pay a bill or paying one

twice….just not a good thing. Well at least not good for my budget. 

The more stressed out I get over forgetting things, the more things

I mess up and others get mad at me or mad at myself.

          I have had mood swings too!  Boy say howdy have I ever been

having mood swings.  From crying to being just out-and-out silly. 

Issues about my younger son deploying to Afghanistan has weighed

heavy on me.  I am so worried and have mixed feelings about

him going, but I am going to support him all the way.  I know

he wants to show he cares about our country and the basic

human rights of all people, also to help those who need help

to keep those basic rights.  I am proud of him and what he is

doing, but I’m still worried….. I don’t want him to worry about

 me…..watching him leave is going to be much harder  than

I thought.  Once again, I find myself staring off into space

and lost my train of thought.  My son saw that my TV was

starting to show the signs of its age and the next thing I

know he is walking in with a 42 inch flat-screen HD

plasma TV!  Good gosh!  Just what was he thinking?

But he said he didn’t want mine to go out and me be here a l

one and no TV…..and since he won’t be here for Christmas. 

He won’t be here for his 20th birthday either.  Lord I worry.

          I could have written a dozen good posts since my last post…..

but I keep forgetting them!  I have started on the new medication….

the chemo one….this may be part of my problem.  I know that the

day of and the two days after I take the three dose treatment, I do

feel some nausea and very dry mouth.  And I also feel so rundown

and run-over!  The mood swings and the fog are also part of or

are compounded by the medication.  It is too early to tell if

this new medication is going to help and I have to give it some

time to see what kind of impact it will have on me.  I have

come to an understanding with myself…lol….yes, I did….

myself and I had a long talk….I need to remember what

is important and what isn’t.  So, I can wander around in

the fog as long as I must….have patience with myself

and others….it doesn’t matter if I have anything to say

or not…..this is where I can be me…..and sometimes

wandering around in the fog can be beautiful….slows

you down a bit….gives you a chance to see the treasures

right there all around you.  So what if I forget a few things….

well not the bills or budget…..so what if the dishes have to

wait another day.  I am going to make peace with the fog

and enjoy the view!

          Fall season is now here and for me I love this time of year. 

I hope to enjoy myself the most I can and remember it too…lol….

I hope!  Hang with me folks, I hope it isn’t  going to be too bumpy

of a ride.  So if you find yourself wandering in your very own

fog take time to stop and take a rest. 

Look around for the beauty of that moment and if we

bump into each other sit with me by my foggy

little stream and relax a spell……watch the world go

by and draw strength from that beauty and be at

peace with all that is around you until our paths

cross again……. Lila

 

PLEASE NOTE IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG….” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITH OUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS  http://www.lilabyrdakabirdladybyday.wordpress.com    

 

**Related articles and links are not endorsed nor recommended by this author unless otherwise stated, but are made available for your convenience. 

THINGS ARE NOT ALWAYS WHAT THEY SEEM TO BE.

INDIAN LEAF BUTTERFLY

INDIAN LEAF BUTTERFLY

Just like this butterfly things can look like one thing but really are not what they seem to be…..                                         

       In my last post I said I had a doctor appointment on Monday.  

 

Well my knee started swelling again and I couldn’t make

 

it up the stairs to my full bath so that I could shower and

 

shampoo my hair.  If I couldn’t make it up the inside 

 

stairs that have a handrail, I knew that I would never

 

make it down the outside steps where there isn’t a handrail.

 

One more time I had to cancel a doctor’s appointment and I hate 

 

having to cancel appointments as most do not understand why.

 

They think you are lazy, inconsiderate or don’t care about other people’s

 

time and that you think you are more important than everyone else.

 

I will be charged a $15.00 cancellation fee that will be added to

 

my co-pay of my new appointment which was Wednesday. 

 

I did make it to that visit.  I’m a little worried.  

     

For the last few months we have treated my foot and knee 

 

swelling and pain as gout.  Now the doctor isn’t so sure.  So more tests. 

 

I don’t have the energy for more tests.  They did the starting blood work

 

at that appointment, but I still have to go get x-rays of my knee and foot.

 

      Also I just found out that my sister has throat and stomach cancer and

 

we have a strong family history of colon cancer.  My doctor has been

 

thinking that my lower back and abdominal pain has been my FMS. 

 

Now maybe not, maybe all isn’t what it seems to be.  Maybe this is a

 

progression of my psoriatic arthritis that has now moved from my

 

hands into my foot and even more in my left knee {my right knee

 

has been found to have psoriatic arthritis}.  Also it may now

 

be effecting my internal organs like kidneys or the pain and IBS

 

symptoms of FMS maybe masking cancer symptoms of the colon.

     

 So off I will have to go to get a colonoscopy and just for good

 

measure the doctor is throwing in a mammogram…..I ask are they

 

having a special or something?  Three for one or have two and

 

get a third one free?  Oh yeah almost forgot, another option

 

I could have Lupus.  I had a false positive for Lupus when

 

I was getting a workup that lead to my diagnosis of FMS.  Either way

 

until we get all the lab work back and all the other tests completed

 

including those results, my doctor is starting me on a chemo drug

 

that will help to treat all the above possibilities.  The  drug’s

 

name is Methotrexate Sodium and I’ll have to take three doses twelve

 

hours a part one time a week.  I will freely admit…..this scares me!

     

       Having the blood work was no big deal for me but the

 

colonoscopy is a whole other critter and then waiting for all the

 

test results feels like an eternity.  It isn’t just the fear of the invasive

 

tests them-self but I have family, that I have had to cut out of my life

 

due to their negative impact on my life, that work in the medical

 

facilities where the tests that I need might be performed.  I have done my

 

best to keep my life private from them to avoid as much drama as I can. 

 

I feel very vulnerable when it comes to these tests not just the physical

 

part but also by the medical information that could be viewed by

 

those I do not want to know anything about me.  To make things

 

worse I used to work at the hospital where these tests are to be done. 

 

Who wants the people they have worked with seeing them have

 

such invasive procedures done?  I haven’t been around any of them

 

in the last ten years and what this illness has done to change the

 

way I look would just give them more to gossip about as this has

 

been their habit  and part of why I have tried my best to keep them

 

out of my life.  I do not need negativity like that around me. 

     

       For now I’ll try to not dwell on it and wait until every thing is

 

all set up and see just who will be doing what and where.  Maybe things

 

will not be as bad as I think.  Who knows maybe my fibro fog will kick

 

in and I won’t remember a thing!  Hey!  Stop laughing that’s not nice..lol..

 

it could happen.  Well I’ll hope for the best and pray that the worst won’t

 

be a part of my future.  Heck for that matter I will wish all of you the

 

best and pray you never see the worst and that joy will be your

 

companion until our paths again…… Lila

 

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG….” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITH OUT MY AUTHORITY AND I HOPE YOU COME TO MY WEB SITE BLOG AT WORDPRESS.  http://www.lilabyrdakabirdladybyday.wordpress.com 

      

 

                                                                                                                                                                                                                                                                                                                                     

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IF THEN WERE NOW….

      

.......would I have continued down this path of no choice?

 

          Over the last few months I’ve had some of the most painful days that have lasted longer than I have ever      

experienced.  I have tried all the tricks in my book  but often……nothing seems to help.  Long, dark  and quiet hours     

pass and I find that the morphine and the break through pain medication brings little relief.  I lay in bed desperately     

 seeking any position of comfort and finding none, I fight back the tears.  I try my best not to cry…..not because I’m     

brave…..I’m not….crying clogs up my nose and I can’t breathe through my oxygen tube that way…..see not brave,      

I just need to breath as the feeling of suffocation is terrifying…..believe me I’ve been there before and I have a      

healthy fear of that event.  Instead, I find that I have clenched my fists to the point of bleeding palms.  I’ll silently      

cry shedding no tears, feeling only the sobs as they shake through out my body adding to my pain.  I pray for relief      

and beg for strength and sometimes, even after all these years, ask “Why?”.   But do I really want an answer right      

then?  No, I know I don’t….. not then.  All I really want is some relief and some soft calming inner comfort  that      

I get when I know I’m not alone…..just that soft gentle inner comfort from which my strength comes.  But as I      

have said things have been rough and my body, mind and soul are weary.  I’ve not posted….too afraid.  I said this      

would be my place of truth.  So I have put on my happy face.  You know the one that smiles and jokes      

around while on the phone or on-line with friends, more commonly known as “normal” people.  Then back to my     

world in the dark.  I know things well get better somewhere down this path.  All I need to do is make it there…. just     

over this rough patch.  Putting my feelings of pain and weakness into the written word is a difficult task for me,     

but I am feeling a slight lifting of the burden I carry with me.  I did say weakness didn’t I….hmm ….and burden…     

deep down I still feel some shame for having failed to give and do all I could for my family…..every thing that      

having Fibromyalgia has stolen from me and all those I have loved and cared about.  I know I will make it through      

this as I always do….maybe a little less from the wears and tears.  I do wonder, if I had to start with this illness     

at my current level of pain and all the other illnesses that FMS has brought with it, would I be able to travel down     

this same path or would I have chosen to give up?  I guess I’ll never know that for sure, but I’d hope my faith would     

steady my steps and keep my focus on the goal up ahead and keep me from stumbling off my path.  My faith teaches     

that I am here because I chose to be here and all my trials are mine, custom-made and meant to mold me into what     

I need to be…..so that when it is time to lay this weary body down I will be ready to move on…..     

          Monday I have to go to the doctor and I hope by then I will be able to get down the front steps.  What I had     

thought to be gout in my left knee may not be gout.  My left foot has cleared up, but my knee hasn’t and the pain is      

something different from what I’ve ever felt.  I can not walk without crutches and that can be a problem with my      

oxygen tubing becoming tangled up and then add the portable tank I’ll need to have with me…..I’m going to need      

help and I hate asking for help.  But I did ask for help and have not only one but also a back up…..now that’s a small      

miracle for me.     

          I am going to post this even though I have gone back and forth about doing so.  These are very personal feelings     

and not meant to bring about comments of comfort or sympathy…I know my kindred spirits would do so with love…     

 but I simply want  to share and if anyone else has been or is on this path…..you are never really alone…..     

it’s just a rough patch…..sure to be more……but known just as before….. you will again…… so keep that comfort      

in your heart until our paths cross again……. Lila     

       

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FIG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITH OUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG AT WORDPRESS  http://www.lilabyrdakabirdladybyday.wordpress.com       

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AND THEN THERE ARE THE REALLY GOOD DAYS….

ISN'T SHE SO CUTE!

AND SHE CLEANS UP REAL WELL TOO!

           I know, I have said that I have had to cut almost all of my extended family out of my life due to all of their drama.

 I just don’t need it nor can my health tolerate all the dysfunctional mess. I have heard it said many times that you

 can not pick your family, but I’m here to say yes you can. That is just what I have done. I have a group of people

 around me that are my “adoptive family”…. no not in the legal way but family just the same. We don’t use terms

 like “mother” or “sister” or such…… just “family”.

             Now with that said I have great news!  We got us a new baby! She is a beauty….. a real keeper…lol…. no

 sending her back!  Welcome little Miss Olivia Rachel all of 7 lbs and 5 oz and 18 inches long.  She is perfect.

She cleaned up real well too.  No one thought she could be any more perfect……oh then she smiled….. the clouds

parted, the rain stopped and the sun broke out and was sooo bright!  Yes, this was a good day.  I’m glad she picked

us to be her family.  She’s gonna be trouble when she gets older.  A real heart breaker.  But way before then she’ll

have all of us around her perfect little finger…….. yes she will…. pray for us…..lol….and may you feel the joy

and love of your “family” until our paths cross again……..  Lila

 

PLEASE NOTE THAT IF YOU ARE READING THIS POST AND YOU ARE NOT ON THE WEB SITE “LILA LOST IN THE FIBRO FOG…” THEN WHAT YOU ARE READING HAS BEEN STOLEN AND IS BEING USED WITH OUT MY AUTHORITY AND I HOPE YOU WILL COME TO MY WEB SITE BLOG IN WORDPRESS  http://www.lilabyrdakabirdladybyday.wordpress.com