For those who go to "Pain" Clinics" or Pain Doctors, the government REALLY SCREWED "real chronic pain patients". I went into Wednesday a week ago, so I could get more oral meds tillI a well enough from the infections to have the pain pump surgery to replace it. Well, my doctor was NOT there. He was out of the office for 2 WEEKS is what the nurse told me. So, this "woman" who I did not know; I had never seen in the office at all (and this is after the nurse even acted strange). She quickly said her name which I didn't even get and never told me exactly "what she was". Now this woman i holding my file, with all the info. plus what update I had just told the nurse.She would not allow me to speak, she spoke "over me", and asked why I needed the oral pain meds. I explained Dr. C. knows all about & she said well, yeah I see here som situation going on and I want to now why you take "diazepam"? I looked at hr & said I've been on it for at least 25 years due to trauma in my life, more recent trauma, a husband who left me & then killed himself FEW MONTHS LATER BUT it has always been to also help with the severity of my chronicI said I was l told to come into the office to get my new script for pain meds, for a quick update. Not to be interrogated about meds the doctor already knows I take. pain. Then she asks if I had ever had a "sleep study"???? So, she walked out for a moment came in, mumbled FEW WORDS, AND told ME THE SCRIPT HAD BEEN SENT THROUGH FOR 1 MONTHS WORTH. So I l was by this woman who barely told me who she wast teated me like some street drug addict, SO I WAS PEEVED FOR SURE! I went by my pharmacy about an hour later THEY HD NO SCRIPT, so they said sometimes it takes a few hour (BULL MY DR HERE CAN SEND ONE OVER , I CAN WALK OUT OF THE OFFICE GO TO THE PHARMACY AND THEY HAVE IT & SOMETIMES ALREADY FILLED! So I call & get some idiot who could barely English & he calls some where over to the nurse clinic & the give him som bull that DR..C. has t okay it which he already had it was in the womans' hand when I was there! So, I hung up and called about noon the next day (I went n Wednesday) & I get told the doctor has to send it himself & he will from "wherever he is at".??? NO script, same thing Friday, Monday the same, then TUESDAY AFTER BEING OUT OF MEDS INCE THE THURSDAY BEFORE..I get a call from the nurse at the clinic my med were sent in. I figured it out that ignorant(found out later she was an NP, she called this "Lucid Lane" Place & they called m e to set up an appt over the internet to go over my meds so nothing is wrong!!!!????? Then when the witch (NP) found out I made an appt she had the medication sent in by another doctor the helps mine when he is gone !!! This was none of her business, BUT I KNOW WY THE GOVERNMENT JUST PUT NEW LWS OUT AND MADE IT EVEN WORSE THAN IT WAS ON REAL PAIN PATIENTS AND REA; GOOD PAIN DOCTORS, SO THEY HAVE TO JUMP THROUGH HOOPS TO EVEN GET THEIR MEDS!!! So I went ahead with this "interview assessment to shit her up. The woman that did this was awesome. About 5 minutes after talking with me she said you really i not need to be put through this BUT due to "new" rules & I said let me guess the government mess that just happened the 1st of January! Her name is Michelle & she could not "say" it n those words BUT she basically said what I did Doctors who help give chronic pain meds are COVERING THIER "BUTTS" Due to government crap. She said just in case the "authorities" probably DEA comes in & checks files that info is in yours is all is well. RIGHT Now IF I WERE WELL, I WOULD BUY A TICKET TO D.C. & GO TO CONGRESS & GIVE EVERYONE I COULD FIND A PIECE OF MY MIND!!! WE HAVE GOT TO GET TOGETHER & FIGHT THIS!!! IF WE DON'T DO SOMETHING, WE ARE GOING TO SEE IT GET WORSE, THEN WHAT???
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Wednesday, February 1, 2023
Thursday, September 1, 2022
WICKED MEMORY (Memories)... (New song lyrics I am working on)
WICKED MEMORY(MEMORIES) NOT SURE WHICH YET...
I've had a new "some lyrics" come to my mind since yesterday... but I only have the "chorus" started.... The name of the song will be "Wicked Memories"... and something like "You left me here, but left your Wicked Memories to fill days with burning pain, even buckets of tears I've cried for you could not put our those fires, only months of rain could put out those flames... and in the blood stained nights, with your rattling chains, that squeeze my heart and bruise my soul. you left me standing, with all the doubts and fears, and a bruised & tattered heart plus a love that's grown cold..." I have MORE floating lyrics around in my head, and can kind of hear the music but this is a hard one for sure...
I watched on that fated evening you walk out that door .. just like you did a dozen times before... this time when you slammed that heavy door...yet this time your tattered picture fell and shattered glass all over the floor... pricked my fingers and made them bleed.. that when I felt the 1st pain of your Wicked Memory... my heart bound by that ball and rattlin' chains.. my days filled with your evil face.. nights haunted by that ball & rattling chains, bruising my heart with their squeeze making my fractured heart bleed.. you took everything but forgot to take your Wicked Memory. I finally fell down upon my knees... broken and bent.. Unwell to everyone it seems... impaired by thoughts of what we used to be and all that you left - that Wicked Memory.. all those buckets of tears I cried could not douse those melting flames, begging and pleading for the fires to fearlessly go away.. it took months and months of cold pouring rain, to put out the fires & stop those licking fiery flames.. As I built a coffin to put in what you left behind, on top I found a place perfect it seems, that where I'll bury your Wicked Memory.. I nailed it shut, sealing it forevermore... Under that old oak tree I buried it 6 foot under the ground., and quickly the tree was dead limbs and withered leaves, cause you wretched it with your Wicked Memory.. Now when she leaves you and she slams that hardwood door, her tattered picture crashes to the floor...shattered glass cut your fingers & pierces your cold soul, when you start to bleed finally you'll know about a wretched feeling of a Wicked Memory.. but don't come around here knocking on my door.. I don't want to hear your voice or see your face anymore... nothing you could do would make me love you anymore.. you tore my heart into pieces for that last time, as you did before.. so go cry your own tears in buckets of pain, I'll bet even months of cold pouring rain, will never put out her fiery burning flames.. and someday when you fall down upon your knees, You'll be surrounded by Her Wicked Memory...
Saturday, February 16, 2019
Saturday's Copy of My News Paper! "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"
"Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"
All aspects of autoimmune/chronic pain illnesses, fighting to survive & grow past them, as I now stand alone to disallow these to get me down.
Wednesday, August 8, 2018
Our "fur-babies" & just how critical they are many of us our Live's, chronically ill, unable to get out, or have little or no family nor friends
I realize many people in the nation and around the globe have "fur-babies"... I know there are a great deal of us that think of them, as a family member, & crucial to our daily living.
When you get a puppy, kitten, or any type of animal that you can "bond" with, that bond can be so tight that either "you" or your "Fur-kid" can be severely upset for one or the other to not be around.
I know for me, if I didn't have my two "fur-babies" I don't think I would survive with all of the health problems, loss of two other precious pups, so much pain, & the "difficulty" in life to survive all we go through.
Those with pets, know they love unconditionally, they are loyal to the "inth" degree, and they treasure YOU as much as you treasure THEM!
It even makes me upset just to have to go away for a day and night, and them not be able to go... I worry like it was another "human" family member, they are who keep me smiling when I want to "pitch life" down the drain and say to hell with all of it.
So, I "lost" two of the most precious pups of my entire life... my dearest Tazzy, my Pug that I got for a Christmas present and she was only about 7 weeks old when I could finally pick her up. She was everything to me, no matter how sick, how much pain I had, how things seemed just out of kilter, there Tazz was to make me smile... Then several years later, I decided to add a 2nd fur baby to my home. So, Bubba Gump, (Bub's as I called him) who was part "doxie" and part "chiquawa" but I didn't see much of the 2nd part in him... they called him a "Chi-weenie" but the "Chi" was not there in looks. Anyway, he also came along at about 6 weeks old, so tiny he could sit here on my desk with me. Tazz was about 6 almost 7 years old, when one morning I noticed she was "acting odd". From the time I got her, about 10 times during her entire life she would get a "seizure like" episode, and would shake, shiver, get tired, and we had to hold her, talk to her, and in 15 minutes she would usually calm down, and be fine and ready to play. One morning, she just acted like she didn't have an energy to even walk to the kitchen. I went to look for her, since she was not coming when I called her, and she was laying beside her water bowl, so weak I had to literally help her put her head up enough to get some water. I almost had a heart attack.... I went into almost the worst panic attack I had ever had, and immediately picked her up, wrapped her up and rushed to our Vet, who thank goodness is only about 3 blocks from me... they took blood work, and Tazzy, just was limp and weak... and my heart broke to see her like that... I will never, never forget that feeling I had... so the Vet said she felt like taking her home with me was the best idea and then bring her back the next morning for more tests... Well, I think the Vet and I both knew Tazz would not go to the Vet the next morning....
It's taken me a while to even try to finish and post this. I still feel the pain from such a great loss, of my two fur-babies. Those that don't have pets, may not understand the way they become a family member. When you live alone, or don't have much family, or many friends around, that one or more pet, whether it be a dog, cat, or others, are what keep you going. The days when the pain is severe or any number of symptoms arise, I can look down at Bella and Peanut, and know that I am "needed and loved unconditionally by those two small tiny fur-kids....
I wanted to get this published, but I will close this one now, and do another in a few days.
Friday, January 26, 2018
Arthritis Foundation and Washington DC March 2018!
It's Time to be United! In the Fight Against this horrific life altering diseases
It is almost here! Another year gone by and time to get to Washington DC with the Arthritis Foundation to get on the bandwagon and get the House of Representatives off their "kiesters" and on up to getting a Cure for RA, Osteoarthritis, and all the many other diseases that an be "packaged" into these... we keep hearing more and more about "pain" and now this "opioid crisis"...
If there was a "cure" or a way to "regenerate" the damage that so many of this horrid illnesses cause some would NOT NEED pain medications!!!
So, those who get to go, tell them YOUR story, your children's stories, or whomever you are there to represent!
Sunday, December 24, 2017
Wishing You and Yours a Beautiful, Peace filled, loving, and blessed Christmas, and May 2018 bring much needed "good events" to us all!!!
I realize MANY MANY of us have been "touched" by severe weather, threats from those who wish to harm us, Mother Nature's wrath, from fires, to hurricanes to tornado's... people that "abuse" others, and just now after MANY years they have the "courage and voice" to speak out...
So, as you gather around friends, family, the table, food, trees, gifts and more... Remember to keep "HOPE" Alive and burning brightly in your heart, say a prayer for those less fortunate, even though many of us are on that "list" of misfortunes also... hold your head high, and don't allow others to take over your life... PRAY that somehow the WORLD finds "PEACE" and always hold onto those you love and let them know everyday that you do...
Many blessings I wish for all of you and again hoping that the New Year of 2018, brings much goodness to us all!!!! Below is a "montage of photo's of myself, my daughter and her family, my 3 Grandkids, and my 2 Fur-Babies Bella Doxie and Peanut!
Monday, December 11, 2017
As Always, "Shi*" Happens, and it if will happen it will be me... 3 strikes are enough for sure, home repair, chronic illness, expenses rise, and benefits fall....
Wednesday, November 8, 2017
Trying to "find a new path" and Easier "lifestyle" for me, because i simply am not able to do all the stuff around my house I need to...
I never thought I would "want to live" in an apartment agai, BUT with the ways things are, the expenses of trying to keep a house "together", painting, roofs, inside work, floors, putting walls up in the laundry room, MANY trees that either need to be cut down or trimmed, and more.., the list is endless, and I have to face the fact I can no longer, "hang ceiling fans" and stand on a ladder to paint, or buff hardwood floors, fix a dryer again that has gone out, try to "fix" what the "scam artist" made a mess of with the repair and paint "job" he was "supposed to do on the outside of my house, and again, everyday there seems to be more, that keeps me away from my writing, my blog, my advocacy work, spending time doing the things I "want" to do, rather than a never ending realm of "repairs"..... so after the holidays, I am selling my home, and moving probably closer to my daughter around the Corpus Christi area, in an apartment, where I am no longer having to do ALL OF THE UPKEEP, MAINTENANCE, AND EXPENSE OF LAWNS, AND SUCH!!!
Well Hell, Just AS I THOUGHT! The dryer had the thermostat for some reason "short out" I think by the looks of it... so it (I can see) it "burned one of the tiny connections on the heating element... the element looks "okay" but with that piece damaged, I didn't take a chance. I ordered the ENTIRE ORDEAL, thermostat, the thermo fuse, heating element, and then the wires that go onto the thermostat and heating element. This is just about what happened before. I looked it up and it was in mid 2013 that we replaced all of that before.
Thank goodness for AMAZON and keeping up with orders. I could go back and see exactly what I ordered then and so I knew exactly what I needed!!! It does piss me off that in 4 years it has gone out again, BUT when I MOVE, if the apartment does NOT have a washer and dryer, I am leaving mine to go with the house, or selling them and will buy a new washer and dryer. I bought them 2005, or early 2006 when we first moved back to Ennis, so they have served their purpose. We did have to replace the parts before 4 years ago just like this in the dryer and then I know there was also the front "button" in the door that broke, and we replaced that, and I "think" something on the washer had also gone bad at one time and we replaced it also.,, SO ON THIS DREARY VERY COOL, RAINY CRAPPY DAY, I'VE been pulling the back off my dryer in that very TINY damned laundry room that has NO light worth a damned, so I was trying to hold the flashlight and the the damned hex screws loose from the back of the dryer, LOL..."Tis done and I've put the order in for the parts, which will come in on Friday! But, of course I may not get them early enough to put it back together until Saturday...
I was SUPPOSED TO ONCE AGAIN GO TO THE CASINO ON SUNDAY! But, now I am not sure if I will, Bella has surgery next Wednesday bless her little heart...I had to postpone it from this past Monday, I've been under the weather with a headache, sore throat, very hoarse, and my right shoulder and elbow are about to drive me nuts. I guess I've been using it painting outside and putting down that edging that I have to use a rubber mallet to drive the stakes into the ground that hold that edging down... plus cut more tree branches down and still need many more. but today I "think" I am just about through for the day..., I got up again very, very early and didn't sleep worth a damned, and I am exhausted honestly.. it seems to be non stop worry over this house, the yard, how many trees need to either be trimmed or cut down, and I am just no longer able to do even with the "cordless" mower, weed eater, chain saw, and so on...
If my neck and shoulder specialist "knew" what I've been doing he would probably have a cow! I am really taking a chance with much of what I have been having to do myself, between the hip fractures last year in December to the 4 month ordeal getting over neck surgery this past April, along with my lower back, now the shoulder that has been replaced and that elbow on the right side just giving me hell with pain, and the weather does NOT help for sure...,
I "PROMISE" to get back TO YOU GUYS, MY READERS, AND THOSE THAT FOLLOW MY BLOG, MY NEWSPAPER, MY FACEBOOK, TWITTER AND SO FORTH... AS SOON AS I AM OUT OF THE HOUSE, IT'S SOLD, AND I AM SETTLED INTO AN APARTMENT, MY HOPES ARE THAT I CAN ONCE AGAIN FOCUS ON THE THINGS I WANT TO DO, BLOG, WRITER, BE WITH MY TWO FUR BABIES, AND SPEND MORE TIME ON MY ADVOCACY WORK!!!!
Thursday, July 6, 2017
Kratom??? Have YOU heard of it? Used it? Know more about it.
Kratom, it was shown to me by a friend on Facebook,
There are several "strains" of this "herb"... that is derived from a leaf on plants found in
"Kratom is a plant that takes its origin from several countries belonging to the Southeast Asia. Also, known as Mitragyna speciosa, it is a traditional remedy in Thailand and other nearby countries for several ailments"
The strains are different, and some are used for anxiety, others for pain, stress, to be even a "pep"pill, and give you energy.... each one seems to do something different, and it depends on the type, and how much used for whatever ailment you may deal with...
So, here are a couple of links below and I would LOVE TO HEAR FROM YOU!
IF YOU HAVE SEEN THIS PRODUCT, USED IT, KNOW MORE ABOUT IT, PRO'S OR CON'S I REALLY WANTED TO GET INFORMATION FROM THOSE WHO HAVE EXPERIENCED IT!
THESE ARE just a few links and there are many more, and many about the different "strains" and what they are used for....
Tuesday, March 21, 2017
Rheumatologist appt today, hoping for Xeljanz, severe finger, thumbs, wrists pain, stiffness, swelling & needing relief - Also thinking that I have "shingles" and not something biting me
So, I always hate the traffic. My appt is early afternoon so that will help some, plus I will leave in plenty of time just in case there is issues with traffic, but still just the regular traffic that particular way is terrible any time of the day. Plus the drive home is almost as bad... same deal you HAVE TO be in the CORRECT LANE in order to make the cross back over to I-45 and that is about a 6 lane or more highway there, and goes all directions. Plus they have been doing a great deal of construction in that area so that even makes it worse. Then you have the idiots that don't get in their right lane until they have to cross over 4 lanes of traffic at the last minute and risk a chance of hitting someone with their stupidity.
I know most of them are from that area and they think the "know" just how to move in the lanes, but usually even if they are driving like maniacs, it gets them no quicker there, than me, who is driving in the correct lanes with the flow of traffic. Speeding, is something I just don't do, BUT as many know in huge cities, with that much traffic sometimes driving the "speed limit" will get you ran over also. So, I've learned over the years in those places to try and drive with the flow of regular traffic, thus usually it makes it a bit easier to be in the lane you need to be and give yourself time to be there. I am a good driver as far as I am concerned, but it the other fools on the road that bother me... trying to look out for all of them, in so many lanes at once, and then trying to not hit someone when they cram on their brakes, or avoiding someone behind you hitting you because they are not watching to see brake lights coming on or they tail gate, which pisses me off to no end. Those that tailgate are just accidents waiting to happen. Anyway, I am hoping we try Zeljanx.
That is my hope BUT since I am facing cervical neck surgery in probably a month, my fear is that they will not want to put me on the medication, until after the surgery, and a few weeks after it until I am kind of out of the woods for any type of infection. BUT, hopefully that won't happen, and I can get approved for it and get started quickly. I know they will have to send paperwork into my insurance company to get that medication approved. After all of the crap going on now with the government, my fear is many of us will wind up having to either NOT take our medications, because they will not cover them, or our co-pays will be higher, or we will have to try and get the drug companies to help with the costs, which many of them will do now just to be able to get the meds out there and hope the insurance will finally wise up, but I think it is worse when you are on any type of Medicare, especially a Medicare Advantage Plan. So, I am going over things and checking email etc. I will have to get out of here a couple of hours before I need to be there. by the time I get to the Valet parking, and then get in to check in, fill out paperwork since it has been so long since I was there and then all of the things to tell them. They are not aware of my hip fractures and my ankle/foot issues, or the complication with the hematoma on my hip and so forth. So, hopefully this visit WILL help and be one that is not worth going for as they do sometimes.
I feel that maybe is my what I thought was some type of "bite" or sting, could be shingles. With them being on one side of my body, on my upper arm and on my torso, it sounds like and kind of appears to be those... I take the medication daily for my cold sores, which is the same family of virus that the shingles come from, so my thought it that my case might be "less" due to the medication...
Saturday, October 22, 2016
Catching Up, Letting You know what is going on in my neck of the woods, and telling you I am still here and will be working on my blog.., so don't give up on me....
Wednesday, September 14, 2016
"Pain Patient Bills of Rights"
In Honor of Pain Awareness Month Here is one "Chronic Pain Bill of Rights"
Monday, August 15, 2016
Monday, Rain Finally, Catching Up, WEGO HEALTH 2016 AWARDS! and my Nomination - Check it out!
I've got to take the Elantra over to Wal-Mart - depending on the weather, maybe tomorrow, the battery has had it, and I can charge it, but due to it sitting and not being driven any, it runs down... but it needs to be changed anyway. It already was old and not working as it should... so I need to take back some "horrible" paint brushes I made the mistake of buying at Wally World and I am taking those back , plus I had bought some french onion dip mix at HEB, and two mini rose bushes, that had for $1.99 each last week... it was kind of "odd" to me that they had them marked down so low... they "appeared" to be healthy!!! BUT, within 2 days, one of them just died... no apparent reason, I had not done a thing but put a bit of water on it, and it just died... the other one, was not looking the best, but I decided to re-pot it to see if it would be okay... hell NO, it died also... the onion dip package had a hole in it, so it is hard as a brick... and I believe I had mentioned those things over the weekend... but I threw away the small pots the roses were in from the store... I have the receipt and the little plastic explanations about them, and one of them I still have the paper that was around it, but I only have the one bush left, that is already in another pot, dead... but I REALLY don't want to go the the trouble of taking that dead rose bush in... so I am going to take the receipt, the dip mix, and tell them about the roses... I THINK THEY KNEW something was WRONG WITH THEM... SO THEY MARKED THEM DOWN... to get them out of the store before they died... somewhere someone either put something wrong on them, or did something, and they knew those bushes were going to die... I just can't believe both of them died within 2 or 3 days of me bringing them home... I have two from a couple of years back and in fact both of them are on the porch and both have blooms on them right now... other than that if you have TIME -
PLEASE GO TO THE WEGO HEALTH NOMINEES FOR AWARDS THIS YEAR AND put a "good word" in for my nomination... I have not said much about it, but I am nominated right now for my blog, and there are many other awards that you can be nominated for... so not just me, but anyone and in any of the categories you feel should be recognized and get an award (I would get a special graphic to put on my website, plus they send the winners each year a box full of goodies, balloons, a little award, T-shirts, pens etc... I actually also judged the past two years for them also.. so they may ask me again to judge... that was kind of fun.... Here is the link and I've got to get my butt in gear and get to painting....
Sunday, August 7, 2016
Sunday's A.M Addition to my Newspaper All things Autoimmune, Chronic Pain and Dementia! And Suggestions?????
This is MINE to Add, change, or whatever I feel my audience" wants to read, see, hear more about and so forth (as far as health issues go) PLEASE FEEL FREE TO MAKE SUGGESTIONS...if yu have another health issue, or would like to see more about something in health, let me know and I can go in and get more article and information about those topics as well as the ones I am giving you!
I am DOING THIS FOR YOU!!! "My "Audience) So, post, email ,speak up even post on the paper itself and give me your personal thoughts and issues!
Tuesday, June 14, 2016
Thank you Extended Thoughts, Gratitude, Life, Lupus,RA, & All of the Health Issues In between...
It was serene and surreal - both - me there with her, holding her tiny hand in mine, as I "knew" like I said I would that "time" was near, and she was ready to go "home" to be with my Dad, and all of the loved ones, that had passed away before her. As I sang several hymns to her, all of which were songs that she so loved to hear my Dad sing, and did here him sing, many, many times over, and I finished the last of the old hymn "Pearly White City", Mom drew one last breath, and that was it, and it goes "Tis' finished".
There was such a mixed emotion there just the two of us, so silent, yet the moment spoke in volumes that I knew she was at peace, no more pain, no more suffering, no more of laying there, having no quality of life... and I had lost not just my Mom, but someone I had grown very close to over the past 10 years in different ways, and the thoughts of all of our laughs, fears, talks, trips to the Winstar over the years, and all came flooding over me, like some of the floods we have experienced as of late, yet much in a good way.
I suddenly felt "peace" also. I suddenly in my heart of hearts knew, that all we had "endured" over the past at least 8 to 9 months and really much longer, now was over, and we could both rest in the fact, that she moved on to be "better" and my own "job" here on Earth is far from finished.
Not just "things" to do because of her passing, but LIFE to live, that I know now was waiting for this to happen. NOW, is when after things are settled that I shall finish my 3rd book, because "her story" shall be a part of that book.
I want to once again extend such a thank you to our Physician's Choice Home Health Care here in Ennis, as well as our Family First Hospice. All of them, especially that last week with the Hospice people would been so much more difficult had it not been for them. They look this horrible situation, and made it a bit easier to bear.
I am in gratitude of Keever's Funeral Home, Father John from the St. John's Catholic Church here in Ennis also, the Ennis Flower Shop who did such a beautiful job on the casket spray, and everyone else who sent their wishes, flowers, donations, and put their love and arms around my family, as we dealt with and continue to deal with a very sudden loss.
As the days move forward I will now be able to begin another realm and branch of my journey here, in my writing, and in my life. Of course there are still many things on the "list" of to do's, yet as I do those, I will now be able to get more back into my own writing, and pray that my "voice" shall once again speak to me in order for me to complete my 3rd book, and publish it.
I also have more advocacy work to do, since Alzheiemer's/Dementia, especially Lewey Bodies Dementia, will become a huge part of my advocacy work....
I wanted to catch each of you up, and let you know what is happening, give you some links also, and again tell you how much I so appreciate your reading my posts, and continuing to follow this journey we call life.....
Saturday, May 7, 2016
One "Mixed Emotional" Mother's Day tomorrow.... And A Happy Mother's Day to ALL Mom's everywhere!
HAPPY MOTHER'S DAY TO ALL "MOM'S" 2016!
Tomorrow, Our Upcoming "Mother's Day" will be one of the most difficult Mother's Days to remember. As the overwhelming realm of mixed feelings, thoughts, emotions, all surround me, I am just at almost a loss for words today.
My "Mom" once again did not know who I was today, nor yesterday. I got there, and she told me she had "company" yesterday afternoon and I said you did, who? She said " I am not sure" and then I asked her if she let them in the house, and she said, No, they had a key, I guess.... Well, the "company" that visited yesterday afternoon was ME. I brought her some chicken nuggets and fries for dinner around 5PM yesterday, so I asked her if they brought "chicken nuggets and fries"? She said, well, Yes in fact they did...
I did not now whether to sit in the floor and cry, or sometimes when she "does not know" my as her daughter, I will say, Mom I AM your daughter.... yet it is difficult when I am sitting in the middle of this every day, 7 days a week, and when I am not there for those hours I go, then I worry, maybe I should not leave her, BUT, I am totally drained, exhausted, and my own pain level today is well over any "10"
I realize my neck and lumbar spine are continuing to get worse, AND all that I am doing is not helping.... BUT she is my MOM, somewhere inside there she is my Mother, and I swore I would always take care of both my parents no matter what... so "Happy Mother's Day" to ALL of the MOM'S, Grandmother's, "Son to be 1st time Mom's" and the many that are "active" in being a Mom in one way or the other... I bid you peace tomorrow, love and hope.... and even when there is just a "shell" of a Mom you once knew, remember SHE is there always in your heart....
Tuesday, April 26, 2016
A Question We Often Avoid - Why do "Chronic Pain Patients Commit Suicide?
Thursday, March 31, 2016
What A NIGHTMARE FOR CHRONIC PAIN PATIENTS, FAMILIES, CARETAKERS... THE CDC, TRYING TO GET CONGRESS INVOLVED & Just how Insane all of this is!
HAVE ANY of YOU that are in CHRONIC PAIN or are interested in CHRONIC PAIN ISSUES due to being a caretaker, or having a loved one that deals with CHRONIC PAIN SEEN THIS????!!! Talk about ONE GARBLED BUNCH OF bureaucratic RED TAPE GIBBERISH, THAT BY THE WAY THE CDC IF YOU DO NOT ALREADY KNOW IS getting CONGRESS in on all of this, and CONGRESS could PASS LAWS OR BILLS that MAY INHIBIT OUR PHYSICIANS and how they treat PATIENTS!!!! The GOVERNMENT SHOULD HAVE NO SAY in how our physicians treat patients with ANYTHING!!!
I was just blown away by this... I have read all of the other things going on but when I FOUND THIS, it made me so upset and so mad, I am definitely going to write to my Congressmen and Women and let them know exactly how I feel about this. I am watching MY OWN Pain Doctor who has been seeing me for almost 9 T+YEARS and has NEVER hesitated to do what was necessary to keep my chronic pain level as low as we could so I could function in a daily world, take care of my home, my MOM, and have some "quality of life". Yet NOW I have noticed SUDDENLY he seems HESITANT or like he is upping my "pain pump" meds very slowly after me having the pump since 2010!!! He replaced it on Dec 29th, 2015 after it had a motor stall, and he has yet to get my medication level back up to where it was.
NOW, I WILL SAY my pain seems to be a "bit better" since I have been on the Minocycline for the RA/Lupus. It has been about 3 or 4 months and since we are doing the pump meds slower in upping the doses, I have noticed it could be I may not need to have the pump set as high as it had been which is awesome! BUT, I also am concerned deeply about his "manner" about it all now. Suddenly, since this CDC mess started even he seems like he is being even more overly cautious about the medications and how much I need.
Now, he is very willing to up it more even next week, if I am still not at a comfortable enough level, so I can say he is not giving me any issues such as that, but it is just what he says, or more "what he is NOT saying" that really has me concerned. So, I wanted to post this, and I will put it up on my blog, and my other Facebook pages, and I am going to try and have this as an article on my newspaper (which by the way, will be "linked in" with my blog soon)... but I just almost fell out of my chair when I began to try and wade through this ridiculous mess, and see what the CDC is doing... and they are "lumping" people together... for instance, if someone had been on a prescription pain medication THEN went to something such as heroin, rather than say that MANY of them get those "prescriptions medications" off the streets NOT FROM DOCTORS!
So, it makes it sound like MANY more get scripts and then go to heroin from their physicians and that is just wrong! If they got down to the line of whom gets "illegal prescriptions off the streets" then decides to go to heroin, due to it being cheaper etc... those people should NOT be COUNTED into those who go to illegal drugs after taking prescriptions from doctors. So, their "numbers" are "skewed" as to those types of facts. So, just coming up and saying "so many thousands" go to illegal drugs after opioids that are "legal" is not correct.
And are they taking into consideration the number of those who are in "chronic severe unrelenting pain" who cannot get help from doctors, that decide to commit suicide? I have had over the years several people ask me directly, How do you live and try and have a life with that much chronic daily pain? Then They add" I believe" I may just jump off a bridge, or kill myself before I could live my life like that!?" ALL of us NEED to write our Congressional Leaders, get our physicians involved, get our family members, friends, those who have chronic pain, and know they would not have a life or a quality of life without the proper medications.
I DO NOT believe in "quacks" that just hand out medications of any type just to get people into their offices for money! Those that do that to rip off Medicare, Medicaid, Insurance Companies and "their patients" should be removed from being a physician. I also do not believe that some "so-called" pain management clinics are "truly" what they say they are. When I walk in to a physicians office, that is "supposed" to be a Pain Clinic, and everywhere you see a sign stating "We do not prescribe pain medications" to me that is a red flag warning that something is wrong!
Then DO NOT call your "clinic" a "pain management clinic" if you are not offering ALL TYPES of pain management, whether it be, alternative things, therapy, acupuncture, and other types of pain management items, injections and so forth... but that should be NOT considered "pain management".
There definitely needs to be a "different name" for those who ONLY OFFER "alternative" ways of pain control. It is misleading to patients, and unfair to us that think we are going to someone who can help us with pain, whether medications of any kind are involved or not, if the first thing you see is that you do NOT prescribe pain medications. It could be that "opioids" may not be needed, and there are certainly other types of medications, such as muscle relaxers, meds for certain types of nerve pain, NSAIDS for those who can take them, Migraine medications etc... so the "host" of pain control medications are NOT ALL "narcotics"..... This is a HUGE PROBLEM that needs to be resolved. And I know there are people who "abuse" the system. They are NOT legitimate patients and they get medications for other reasons other than for real chronic pain. BUT, the THOUSANDS OF US who are TRUE PAIN PATIENTS should NOT BE PUNISHED due to those who "choose to abuse"...
Rhia - PLEASE Do your own research and take time to write, call, email your Congressional people, the CDC, and spread the word through your own Social Media Networks!
Here is the link to this bunch of garbled mess from the CDC!
These photo's of my legs, and the abscesses are just more of a small "portion" of suffering from the pain, and all of the other complications from Lupus, RA, Sjogren's and so forth... We "NEVER FOUND OUT" exactly why all of these appeared on me... but it took over 2 YEARS for it to all clear up.... They just told me after I went through every test and specialist that it was the Lupus... and then the cellulitis below that turned into abscesses on both of the tops of my thighs tool=k over 6 MONTHS to finally "heal" and now I have two huge terrible looking scars from them... and talk about pain... I had to go for 8 weeks once a week to a "Wound Care Specialist" in Dallas, that debrided those every week, in other words "cut out all of the dead materials and put special material in them that was a "collagen" to help "fill in" and heal those very deep wounds... at first they were about 3 inches deep and at least 2 to 3 inches wide...
Below are the wounds from the cellulitis that both turned into abscesses.... and in between me seeing them, I had to clean these myself, pull the packing out and redress them daily... I was on 2 different antibiotics for 6 months at least... and the still look horrible... I love spring and summer, but I dread having to have people "see" what they look like now....
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