I Did It Again!

Just got to love these Minions.  I am still a live, just thought I’d throw that out there in case there was some doubt.  There has been so much going on in my life of late and feeling like crap most of the time has left me so not in the frame of mind to blog.  All the same old, same old and one can only say the same thing so many ways before it all becomes just blah, blah, blah and more blah.  But I did want to let those know that follow me here or those that might have happened across this blog, that I do have another blog here at WordPress and I have published there today.  So, feel free to check it out too.  Really, this whole post is just a shameless ploy to get you to read my other blog too! It’s called  “LILA’S ROOM WITH VIEWS……” at  https://birdladybydayakalilabyrd.wordpress.com  . Enjoy!

     Now me and my Minion are going to play with some critters 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 https://lilabyrdakabirdladybyday.wordpress.com

 

 

 

 

 

Breaking News: I am tired of everyone playing God in my life!

“She said she has had enough. She opened her window and yelled out “I’m sick and tired and I will not take any more of the crap you people, who think you are God, want to throw at me!” and then she sat down and calmly cried. Well folks I think she has finally lost it. That is the Minion Breaking News for the day! Have a good day!”

    I am about at my wits end. So, what has pushed me over the edge? Pain of course. What else could do me in so fast? Since my last posting I’ve had all the usual stuff {fibro, psoriatic arthritis, psoriasis, gout, kidney stones,internal shingles and still on O2} and been to the doctor, ER, tests and more tests. I’ve jumped through every hoop I’ve been told to jump through and without a single complaint out of me. I’m dealing with all the extra medical bills that come with it and the super high power bills so far this summer {$400 to $500! normal $120 to $160} even though my SSD check is the same amount year around. The extra bill money must come from cutting back on some meds and food.  Bet you are thinking I’ve lost my train of thought and rambling. Yeah, admit it. You know it’s true and most of the time you would be right, but not today! There is a point to my rambling. It helps to set the stage for my mind blowing, pissed off, anger and frustration. Trying to get my pain meds filled is like getting Congress to pass an act of legislation. Some Pharmacists now think they are God and have become power drunk! It’s bad enough that the new DEA regulations make it extremely hard for people with chronic pain to get relief, but now CVS pharmacists tell me that even though the DEA says there is a 2 day window in which you can fill a prescription {before your last one runs out} that they  can refuse to fill the new one until the day that you run out of the old one! Excuse me but WTF? I asked “…and just how do you go about making that judgment call? Do you know the person? Do you know what is wrong with the person? Do you know anything about that person’s life or home situation?” NO! I was told they just look back to see if the med has been filled within that 2 day window anytime in the last few months or maybe if they think you might be abusing the meds {please let me note here that I have not asked for or been given an increase/change in my pain meds in several years, I use only one doctor to write my prescriptions and have used this one pharmacy for ten years but they are all new pharmacists}. So they know better than the doctor, the person and the DEA. Like I said power drunk.

     So, CVS pharmacists have been making my life hell. You see, I’ve tried getting my pain meds at other pharmacies but they cost twice as much and I really can not afford to pay that right now or for the next few months. Some months do have 31 days and a 30 day supply then runs out 1 day early {they do not account for that either I have asked}. I am home bound and the only place I go is to the doctor or the hospital. I have one son and his fiancé to drop off and pick up my meds which happens twice a month as I have two types and they run out at different times. They both work and go to college full time, so it is hard to find time for them to go when the pharmacy is open. Oh the pharmacy will not let them drop off the prescription on one day and pick it up the next they say it must be done all in the same day since it is a controlled substance. I try to wait until the day the med runs out but have then found that sometimes the store is out of stock and I can’t afford to pay more at some other place. So I have to go without or use more of the other pain med, but then that one runs out early and the pharmacy doesn’t care. Every time there is a problem it means extra trips for my son and that costs him time and gas money that he doesn’t have. So, I catch hell both ways. This leaves me feeling depressed, frustrated and crying in more pain.

     I am so very tired of feeling like I am some type of low life criminal.  The drug addicts and dealers abusing prescription meds are not the ones being hurt or stopped…… it’s us, the people, the human beings with chronic pain that are being hurt…… the very ones who should be helped.

     I am thinking of writing to CVS both local and corporate with a link to this post.  Maybe public views and opinions might help. Maybe it will just be a waste of my time but at least it will be my choice!

     Well, I feel a little better now that I’ve blown off some steam. I guess I’ll ask my little minion to take me by the hand and walk with me for a spell, tell me a few of his jokes and odd humor that I like so much….. and hope you can do the same 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 https://lilabyrdakabirdladybyday.wordpress.com

MY LIFE IN A NUTSHELL…and it’s cracked the Minion way…

     I’m really trying to feel better! Been Raining off and on the last few days and looks like it will continue to do so for the next few days. Rain always makes me feel more pain and fogginess. Looks like I’ll be napping….. and listen to that little minion voice in my head saying “It’s ok, try to laugh and take that nap when you need to.”

     I really love these little guys. Why not take a little minion by the hand? Enjoy some minion humor 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 https://lilabyrdakabirdladybyday.wordpress.com  

The Dance

 

This illness and I are long time companions intertwined and inseparable partners in this dance we call our life.

Never to know any other partner again but we know one another better than any other.

Twisting, turning, stepping forward and back in perfect time, even faltering in step while never missing a beat.

So we will continue alone together.

Seeking comfort in our pain forever……..

I seem to have tried for so long to over come the depression that has set in and still only keeping my head above the water that wants to suck me down in to the endless depths of despair. Yet, here I am. Water logged but still here. I guess that has to say something about my will to keep going.

For those that don’t know what I’m going through here is a quick update:

My FMS is out of control, gout is stable but psoriasis breakout all over my body even my face, inside my ears and other private areas that are very painful to deal with and psoriatic arthritis is active in my hands and knees. I feel so tired all the time and the fog just won’t lift. IBS….. well I don’t even want to go there! My sleep apnea is getting worse. My last sleep study was many years ago and then it showed I stopped breathing on the average of ten times an hour with significant drops in oxygen levels. I can’t keep my CPAP mask on while I sleep as I keep pulling the mask off. I feel so bad that I now promised my family I would tell the doctor at my next appointment {end of this month} to have a new sleep study done. That way we can see about a new type of mask that I might be able to keep on through out my sleep. Insurance will not pay unless I have a new sleep study as it has been to long since my last one and my condition has changed and to be safe I need assessment for new pressure settings. So I shall see how it all goes. Maybe if my sleep improves my depression may decrease.

Yes, I’ll keep going and dance this dance as long as I must. I hope everyone else are dancing a dance of peace, joy and comfort 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 https://lilabyrdakabirdladybyday.wordpress.com  

 

Living Hell

     I am so very tired.  I’ve battled this illness for around 20 years now and those around me still don’t understand the nature of FMS.  My older son isn’t speaking to me anymore and my younger son is still here but for how long I don’t know.  My best guess would be only long enough to be able to afford to leave.  Just when I felt that I had made progress and come to terms with all my health issues and accepted my limitations those around me say that I have given up on life.  I should push harder, do more and not give in.  That I am wasting my life and being very, very selfish.  I can’t win either way.  I have sunk deeper and deeper into the pit of living hell called depression and anxiety.  I have nowhere to turn and nowhere to go.  Once again I’m stuck and dependent on others.  My family pushed for me to sell my car as I haven’t been able to get down the front steps to go anywhere by myself . So I sold my car to a friend who is now having trouble paying me. That was my last link to freedom.  Now, I must depend on others and am at their mercy.  Even now as a grown adult I am being told by others what to do or not to do.  I am so very tired.  I keep being told that I am in this condition because I have let myself get this way by not trying harder. I was told that when I have a stroke and need some one to “wipe my ass” it will be my fault and unfair to dump that responsibility on to my kids because I was selfish and they will “put me in a home”.  Well that won’t happen as I won’t let myself get to that point…..  I will not let myself become more of a burden that I already am.  I’m not sure when or if I’ll get back to post here again…. I am just so very tired….   so I hope one and all find peace until our paths cross again be it here or some better place……..  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 https://lilabyrdakabirdladybyday.wordpress.com 

 

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JUST A BIT OF TWISTED FIBRO HUMOR…

 

My inner fibro kitty speaks out.

     Yes, yet another trip to the doctor and a whole fist of new prescriptions to try to sort through….. you know…. will my health insurance cover it and how much will it cost….. can I afford the co-pay…. can I buy it now or must I wait to work it into next month’s budget or is it a must, must find a way to get it now…. like new antibiotic to treat yet another infection….. see why my inner fibro kitty is having problems….. oh yeah start back on anti-anxiety medication….. darn where did that kitty go? She took the prescriptions and ran off….she can’t make it very far…. it’s raining and she can’t move any faster than I can….. so it will be a very slow chase… unless I lose her in the fog…. oh well guess I’ll be looking for her 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 WORDPRESShttp://lilabyrdakabirdladybyday.wordpress.com 

Its a learning thing.

         “The Brick Wall”

     MONDAY:  Get up out of bed.  Walk over to the Brick Wall.  Hit said Brick Wall.  Look at hand.  Bloody and bruised .

     TUESDAY: Get up out of bed.  Walk over to the Brick Wall.  Hit said Brick Wall.  Look at hand.  Bloody and bruised.

     WEDNESDAY: Get up out of bed. Limp over to the Brick Wall.  Hit said Brick Wall.  Look at hand.  Bloody and bruised.

     THURSDAY:  Slide out of bed.  Limp over to the Brick Wall.  Hit said Brick wall.  Look at hand.  Bloody and bruised.

     FRIDAY: Roll out of bed.  Drag self over to the Brick Wall.  Hit said Brick Wall.  Look at hand.  Bloody and bruised.

     SATURDAY: Fall out of bed.  Crawl over to Brick Wall.  LOOK at said Brick Wall.  NO change.  Look at hand.  Still bloody and bruised.  DON’T hit said Brick Wall.

     SUNDAY:  Sit on bedside.  LOOK at Brick Wall.  NO change.  Look at hand. Not bloody and healing bruise.  DON’T hit said Brick Wall.  WOW, I have made progress!  I can’t change having fibro but I can change how I deal with fibro.  If it hurts STOP trying to do what ever it is…… find a way around the Brick Wall…..

Oh hell, now someone from my peanut gallery says something stupid like “So, you’re not even going to try anymore?”

     What I have learned?    If I want things to change I have to remember I can only change myself…… oh and that it is against the law to kill someone in your peanut gallery……

     Hope you can find a way around your Brick Wall and have a pleasant stroll in the sunshine 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 WORDPRESShttps://lilabyrdakabirdladybyday.wordpress.com 

 

“Uncle, I Say, Uncle!”

 

                      Eeeeeenough! OK? How can I form a truce with this fibro and psoriatic arthritis? Anyone know? Please one and piss the other off or so it seems.  At present, I think there is only one spot on the back of my left knee that doesn’t hurt.  My right hand, wrist and arm feel like hot coals are in all the joints and have limited range of motion, especially the wrist area. { The freaky weather changes are just about to drive me and my pain nuts!}  Now, let’s throw in an other UTI just for good measure. Oh, and don’t let me forget I had to have a cardiac  ultra sound done and by the time the technician was finished, I was bleeding under my left breast. I think that technician did mammograms in a past life.   I still need one of those too.  Come to think of it, the last time I talked with the doc he said I should have a colonoscopy in addition to all the other tests.  Wish there was some way to just drop my body off for all this maintenance work and repairs but my mind could be dropped into a loaner body, so I could go on a nice vacation until my body’s work was complete.  I do see a flaw in that plan now that I think about it…. yeah staying in the loaner body and running away and not coming back might be just too much of a temptation….lol… but that would be nice….. hmmm oooohhh  just think if we could all have a week each year in a loaner body to use as a vacation from fibro!  See, I’m not being greedy.  Just one week.  OK, now I’m sure of it, my brain has been effected…. probably from chronic fibro fog.

     I am now starting to get some mild relief from my pain meds but not nearly as well as a few months ago.  It really does feel like my level of chronic pain has increased and not solely from fibro.  I’ve not had to adjust my pain meds in a few years.  One more thing to add to my list of topics to talk to the doc about.  Yeah, I have to keep a list or I will forget everything the moment the doc walks through the door.  Anyway, maybe now I can find a comfortable position and get some rest.  I hope and wish all the rest of you out there can find your comfortable spot and get some rest too until our paths cross again…. Lila

 

Photo by: www.jobspapa.com

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 WORDPRESShttps://lilabyrdakabirdladybyday.wordpress.com 

 

 

 

 

 

 

They say life is a journey not a destination….

     Really?  Now “They” give that nice little bit of information?  Not what I signed up for. I’m turning around and going back…..AND I want a refund!  Wow it has been a long time since I last posted.  I keep telling my self I will do better and post at least once a week. Then something else happens and knocks me for a loop.  All the stress just makes my fibro worse. I am currently fighting bronchitis too.  I   would like to put Christmas on hold but for some reason old Saint Nick isn’t returning my calls.  With all the deaths this year, I just don’t feel like singing x-mas songs and putting up a Christmas tree.  I really do miss my aunt who died a few months ago. My sister passed this past year and now my brother a couple of weeks ago.  I am now an only child.  Well then let me say that my older son has stopped speaking to me and he will not say why. Wants me to figure it out…. may have to do with FMS which I heard him say “FMS” isn’t a real illness.  Just a reason to check out and not be a good mother.  Seems to have forgotten when I worked two jobs at times to make ends meet and without help of child support.  Most of what I missed out on was school stuff for him but that was due to working {at the start} and not FMS.  Later once I could no longer work due to FMS, I was able to do a few more school things with my younger son but not many and only after some of our more stressful issues {i.e. unable to work so little money from me}  were resolved. Less stress = Less FMS.  I have always been proud of him and he is doing well for himself. Still am proud of him and love him so much. Both of my sons for that matter.  I hope he will come and talk to me. I told him my door is always open.  I would go to him but pretty much home bound now a days and he said not to try to come over to his home.  Just one more thing FMS has cost me.  I don’t understand how people can say firbromites are just faking FMS.  WHO WOULD WANT THIS KIND OF PAIN?  This kind of life?  To miss out on so much of the lives of the ones we love? Then to be blamed for missing out and messing everything up for everyone else.  Anyway, wish Mrs. Saint Nick would get the old man to call me back.  If he don’t call me before the 25th I’m going to post a sign next to my chimney….”Enter at your own risk”… yep I’ve set a few traps…. hope one and all are having a better time than me…. have a sip or two of Christmas cheer 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 https://lilabyrdakabirdladybyday.wordpress.com 

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Blessed Are the Wheels That Go Zoom

  I have found that even on one of my worst days I can still give to those around me. Such as, days like today. I can assist others around me by giving encouragement on setting and achieving at least one important goal for the day. For example, telling them what they can go do with themselves or even on how to make it a group activity. And with much enthusiasm too!

     Yes folks, that blessed Gout Fairy has come a calling again. It seems that she snuck up on my old friend the Travel Gnome {who is supposed to keep her busy and away from my place} while he slept and locked him in the closet. Yep, she came in and wacked both my feet and knees with her gout wand. Then she even had the nerve to say “Morning Sunshine! And a happy early Mother’s Day to you too!” 

     Well she may be able to make me hurt more on top of my usual FMS stuff but now I am a little more prepared for her. Thank goodness for my new power chair. Having this chair has made a positive change in the quality of my life. Now, I can get  around better even on my worst days and not falling down is truly a blessing since the floor just keeps getting harder.

                                                                         My Chair!

    

   So there, take that Gout Fairy and you go and do one of those group activities with great enthusiasm! 

May one and all have blessed, warm, soft and fuzzy days 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 https://lilabyrdakabirdladybyday.wordpress.com