Showing posts with label surgeries. Show all posts
Showing posts with label surgeries. Show all posts

Wednesday, March 15, 2017

Getting tired of yet another Acute Severe Pain from my Elbow to my hand for two nights - joints, nerves sick and tired of pain, surgery, and it taking over my life!



Well dammit it happened again this morning about 4AM!

 This searing, burning, tingling, pain from my elbow down into my hand and my hand seemed to be "swollen".... of course that is the elbow I had "tennis elbow" in in the late 90's about 1998 or so and had surgery. You can feel the screws etc where it was repaired. I know before it gave me problems about 8 years ago, and the diagnosis was it needed surgery again. BUT, so happened, it began to not hurt as badly, thus I avoided surgery. NOW, though I found out this has to be a "nerve" issue just as I thought. For some reason the nerve "ulnar" nerve that runs down into the elbow and then down into the wrist and hand has have a narrowing of that space it is in, or the nerve is impinged at the elbow... and it happening at night is the primary time this happens.

We usually bend our elbows at night, so that is when it entraps the nerve, causes the pain that is so severe, and the numbness and tingling... like my arm is asleep but rather than just "tingle" it burns like it is on fire and no amount of rubbing it, moving it etc helps. I got up, took everything I could take including my bolus this morning, and caught it before it was as bad as the morning before, and finally it eased enough I could sleep for a bit.

But, I know some of this has to do with the "old surgery" and that elbow beginning to wear and tear for one. due to my right shoulder, and arm after the complete reverse shoulder replacement on the right side, I use my left arm, and hand because up until now it was stronger, and I could do more with it... my right one I do well to hold a plate without me helping to hold it with my left hand etc.... so either that nerve entrapped is due to wear and tear of me having to almost overuse my left arm, or that elbow is definitely wearing down from the surgery before, and it could be a splint keeping it straight at night "might" help but as bad as it got and so quickly... dammit why could it not have happened on Sunday night?

Then I could have talked to my Orthopedic Surgeon who did my hip and actually he did the surgery on that elbow in the 1990's... so he would be familiar or have documentation about that issue. Now i don't know what to do. Do I just "wait and see" what happens? Or do I go ahead and be seen for it and what is happening? Now I was just going to be "set" to have the neck surgery, which will help with MUCH of my ongoing shoulder, arm and hand pain on both sides BUT it won't help that nerve in my elbow...

Plus I go to different doctors for the neck and shoulder replacement, than I did for the elbow issue years ago and then he repaired my hip. I thought yesterday, it was just a "fluke" thing because I've been doing so much with both arms, between yard stuff, and cleaning out that back room, putting that cabinet together, but I did use my cordless drill to screw those screws in etc... not a regular screwdriver that would definitely contribute to what is going on with this "new damned mess"... my joints SUCK, SUCK SUCK... and I am SO SICK AND TIRED OF surgeries, but I cannot live with the pain, the atrophy, the weakness, the loss of being able to type, to do MANY OF the things I love to do so much.... I am just at a loss now what to do.... and to top it off the past three days I CANNOT SEEM TO GET WARM! I know the weather is nuts and it is cold, especially with the wind, but dammit I just cannot seem to get warm, not unless I get on the sofa, sit on my butt in there with the heater going and watch TV! Well hell, I cannot waste my life away watching the television and sitting on my butt all the time.... this just sucks!



 Here is the UR: is to exactly what is going on:

http://handtoelbow.com/ulnar-nerve-compression/

Saturday, February 11, 2017

Talking about our own Advocacy work, activism, the GOOD you TRULY DO, & What makes "us tick" - all of us differ one to the other... and Chronic Illnesses and pain can create and reek havoc on us, as well as age....

I have a "surprise" for everyone, but I wanted to wait until our newspaper publishes it here locally, then I will post it on Facebook, in my personal newspaper and on my blog. I have a "Press Release" from a project, that is really a vital program for research in many different realms of chronic illnesses and/or pain. I've participated two times so far, after they "found" me. 
The 1st time, I guess we did not do a news release, but they have this time. I was so thrilled about it, because I always have to sign a NDA (non-disclosure affidavit) each year they ask me to do my part. I want to share it, not just because if it being "me" but MORE to show ALL OF YOU, HOW YOUR INPUT, YOUR ADVOCACY, WHETHER ONLINE, emails, a blog, Facebook, Twitter, or however you may help out when it comes to activism DOES MAKE A DIFFERENCE! I've done advocacy and activist items now for about 5 years, for different organizations and in different realms. Some of them, really in depth, like getting to go to Congress in Washington DC with the Arthritis Foundation, or posting blog articles, or my Facebook things that I read, post, and try to help provide viable and possible solutions for so many of us, that truly need to be helped, whether through knowledge (which believe me KNOWLEDGE IS POWER, ESPECIALLY WHEN IT COMES TO YOUR OWN HEALTH, ILLNESSES, PHYSICIANS, SURGERIES, and all types of medical needs we step into during life.) I found out that although "some doctors do not like "educated" patients' MANY OF THEM are extremely happy to see patients taking an initiative to reach out, look for answers, make lists, ask questions, and not sit back and just rely on what our physicians tell us. 
LIFE and PATIENTS are too many and too busy, and our medical people NEED us to know all we can... so it saves lives, even our own. If you KNOW your medications, what you take, what you are allergic to, or have an idea about all of your medical issues, your surgeries and symptoms that are due to either a chronic medical illness such as RA or Lupus. Or if you are diabetic, you KNOW your own body, what you CAN eat, how to keep your blood sugar evened out, or other medications, know the side effects, understand when you NEED to call your doctor, OR when that side effect may not HURT you or even after a few days go away, rather than trying to call a doctor's office, and either stop the medication or go on taking it when something may not be right about it. I can almost go in when one of my joints, or my spine, or my muscles, or tendons (since MUSCLES CAN BE TIGHTENED BY EXERCISE) and TENDONS HAVE TO BE SURGICALLY REPAIRED OFTEN TIMES BECAUSE THEY DO NOT GET TIGHT AGAIN, LIKE A MUSCLE MIGHT...
That is why when you have a "torn rotator cuff" in a shoulder, you "may" strengthen the muscles, but if those "tendons" that make up the rotator cuff are too lax, or torn completely away from the bone itself, surgery may be the only option to get back mobility, strength, get rid of pain or much of it, and then strengthen the muscles after the tendons are repaired. You would be shocked and I know even ...
I recently began to totally "understand" the true difference between tendons and muscles. I "asked" the question, and my foot specialist explained it to me... like a rubber band may "stretch" like a muscle... but if it is attached to a board, and you actually tear it away from that board, no amount of exercise will give you back the loss from a tear. I now also realize WHY when someone TEARS TENDONS in their foot, or leg, it takes MONTHS AND MONTHS EVEN WITH SURGERY, to get that tendon "healed". It has to "attach" back to that bone. So, like my shoulders, or my left elbow the "severe tennis elbow" I had was "torn" away from the bone. My orthopedic surgeon attached the tendons back to my bones, with screws, nuts etc... BUT it took a long time for that tendon to actually "grow itself" back to the elbow, and often times, they don't attach back themselves, that is why, so often you never can do some of what you did with that shoulder, elbow, ankle, and so forth as you could at one time.

Before I broke the hip, I had just about made up my mind to try and snow ski one more time in my life. That used to be my "birthday present" the week of my birthday for many years.... but after the replaced knees, and the shoulder replacement, I felt maybe I should not chance "wrecking" one of them again. But, I had decided I would give it a try once more... and thought about making a trip to Santa Fe NM, I've skied there as well as Wolf Creek Pass that I LOVED! 
But Santa Fe has lots of new courses, and much more to offer than they once did, and it is about 7 hours closer than Pagosa Springs, CO where you stay to ski Wolf Creek. But, once the hip was fractured, I then knew there would be no way I would try to ski... not really because of the break of the hip BUT a fear now since my bones are so severely taken away with osteoporosis, my fear would be to "break" more bones, or another hip, or injure my back worse, thus my days of skiing are over with. I have great memories... and in fact yesterday when I was going through looking for the photo's with the fish, deer etc... I started to scan a pic of me, when the "big hair" craze was in... Gosh I wished I still looked that young.... ;) Alas time has become somewhat of an enemy when it comes to skin, aging, and how our lines, wrinkles and so forth seem to develop out of nowhere.....

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!


http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm



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.... 








Wednesday, January 20, 2016

A Few pics of me Signifigant especially to me but hopefully an inspiration to others also




I never thought I would ever see the day, I could fit in these jeans again. I have had them for more years than I care to tell, something like 20 at least - and after I was diagnosed with Lupus, RA, Sjogrens, had all of the surgeries, and then the pain pump put in my right side, I honestly never thought I would be able to wear these, or any waist line high type of jeans... thank goodness I have always been a huge fan of low rise jeans, they fit under the pump... but recently I lost some weight and decided to drag these out of the back closet, wash them and give them a try! And Ta-DA! By heck they fit!!!!!

So, for me this was a Kodak Moment... after going through the weigh issues after medications, surgeries, and I would take some of it off, then have surgery again, could not exercise etc.... or would have to be on high doses of corticosteroids for a flare, and here would come the weight on again.. I have been able for the most part to keep it to a decent level, but it was still depressing for one, to have issues that you have no control over that cause weight gain, loss of teeth, hair thinning, skin discoloration, not including the scars from many surgeries, knee replacements, shoulder replacement, the pain pump incision and also it sticking out from my right side.. so this was a moment for me, that made my day, week, month and part of the year!

I SHARE these with you... in a two part scenario, for me, for one, so I can see that I can still have some what of a decent figure, even though all I have endured... and then of course with my age, etc that contributes to some weight issues, plus I had battled my weight all my entire life after being an overweight teenager... So I made these this morning, for a 2nd part to INSPIRE ALL OF YOU TO KNOW  YES there are times we look and feel like HELL! But then there are times like today for me, THAT I WAS ELATED TO KNOW that I could still put these on, and love the way they looked on me ) So remember to record these types of milestones in your own life... and share them to inspire others...

Friday, December 18, 2015

Life, Pain, Lots of "Stuff" and living with "what we are given".....

Got Mom through the lumbar ESI injections early this morning in Dallas.... 3 different places, and hoping her back pain improves... our Pain Specialist seems to think they will help a good deal...

My "surgery" for the new pain pump (replacement) is on December 29th!!! One heck of a way to end 2015...

My severe pain, in my shoulder blades, down in my elbows, and even into my wrists and thumbs, NOT my other surgeries, thank goodness... BUT, I need another cervical neck disc replacement... I believe he said C-4 ?? is 80% COLLAPSED and has to be fixed...

Good news, the abscesses, one gone all the way, the other about 90% closed also... :)

Bad news the pain is horrible... and I still need the lumbar/sacral back surgery also... ALL of course postponed for at least 4 months now due to the cellulitis/abscesses on both top thighs....

Got the puppy, got his 2nd boosters... and got my hair cut, that was yesterday! I love it, or I will in about a week, once it grows out just a tiny bit... then it is really better, than when 1st cut... and it is SHORT!

Holidays, well suck... my kids will be not around... busy, plus my daughter 8 hours away or so...

And I've had an EXTREMELY ROUGH WEEK, EMOTIONALLY... I AM SURE DUE TO MANY THINGS, AND THE HOLIDAYS, after losing my Tazzy who was an Xmas present 12 or so years ago... plus Jim not here and in Seattle...

Just so much going on, and by the time I "think" I may have time to write or do something else different, something else happens, like I had to put a new flapper in Mom's toliet this week, in among everything else....

Seen some awesome Christmas Movies, I love Hallmark Channel... and other movies as well... the "Coat of Many Colors" about Dolly Parton's young years, was amazing!

So, here is a new pic of me....

 Happy Holidays to All - May we have Peace, Comfort, Joy, Hope and Faith throughout the rest of 2015 and into 2016 - to Eternity!







Wednesday, December 9, 2015

Sharing Life, Holidays, Up's, Down's, Reality, and Dealing/Coping with Holidays when You are Chronically Ill/Pain & have a broken heart, along with problems that follow....
















First I share some "Good News" and Happenings lately in my life. After Losing my Pug, Tazzy here about 3 months ago, and she was a Christmas Present 14 years ago, from my "husband", (we are now separated) & Bub's and I, (my Chiweenie, who is 5) were really down and out about the holidays. My "body" really would not allow me to climb into the attic for the big tree and decorations, so I bought a small tree, and put 14 years of Sleigh Bell's, one for every year my husband and I had been together.

Then I and Bub's have been fortunate enough to have a brand new "fur-baby" addition to the family just this week! He is only about 3 months old, and his name is "Peanut". I've officially adopted him, so he is getting used to myself and Bub's, and we are learning to adapt to a new baby in the house! But, I think he is really the best "Christmas" present we could ever have, and I am so grateful he came along at just the right time.

I adopted him from a local non-profit here in my area called "Tales of Hope". It is all volunteers, who take the pups into their "foster care" until they find homes and owners for them. I am happy my Vet suggested I adopt from them, and so far it has been a very peaceful and simple thing to go through. He came and had a "house visit" for 4 or 5 days, to see if he and us were all a good fit, and then just a matter of a bit of paperwork, they take care of his puppy boosters, micro-chipping, and then neutering, in a few months when he is old enough... so we are happy he has joined us.


Here are some photo's I've taken, of them, of myself lately, and me trying to put "me" back together again, after my husband no longer here, and then of course we lost the lawsuit over the 18 wheel tractor trailer that RAN OVER HIM WHILE THE DRIVER WAS ON HIS CELL PHONE WITH HIS BROTHER!

Needless to say, I know I have told some of that story, but was kind of under a "gag" order until after the trial, which was the 1st week in November. You can imagine where that left myself, but much more than that my husband, who suffered MANY terrible injuries, of which left him partially paraplegic, without some of his "memory for things such as current", and harmed his concentration levels a great deal. All of that with the pain and suffering, from having his back basically broken in "two", with 9 fusions down the thoracic spine, and wired together... he has more "broken" ribs, that not, and a concussion, that they did not realize how badly it effected him until months and months after the accident. He is a web developer, designer, and has been for 20 years, and that takes a huge amount of concentration, and the ability to "hold onto" information as far as not only long term, but short term... which all suffered from the accident. So, without any settlement funds, he is basically not able to get health insurance, cannot apply for federal disability because he had worked for himself so many years, and made well below the amount to pay in social security. The job he had before then, he did pay in, but as we know, that has to be within so many "months" before you apply and he of course did not have those "units" before, since it has been years since he paid in from a regular job.


The pain and suffering harmed my own health of course, and he had been somewhat my "caretaker" when I had surgeries, or flares with the Lupus/RA, or was too ill. He did some of the cooking, running errands, going to the market, etc... and after the accident, he could not even walk down two steps at our front porch, much less walk in a store, drive, or do anything that required, bending, lifting, carrying and so forth. So, as any spouse would have done, I "negated" my own issues, as far as health, trying to help him heal, both physically and mentally... all the while I started getting ill with more flares, and just have one crisis after the other with my own health, and mentally of course I felt almost as if I had "lost" myself and him... I feel I was "grieving" over losing my own "health" and then to watch him change, I grieved over losing him and us.


I know in MY HEART AND SOUL.... THOSE PEOPLE on THE OTHER END OF THE LAWSUIT FLAT LIED IN DEPOSITIONS, AND ON THE STAND, I BELIEVE THEY "PAID OFF" THESE TWO SO CALLED WITNESSES, THAT I KNOW COULD NOT HAVE POSSIBLY HAD SITE OF THAT BUSY HIGHWAY COMING INTO DOWNTOWN DALLAS, I-45 THAT DAY! But, I KNOW SOMEONE USED THEIR MONEY AND POWER, AND PEOPLE TO LIE, thus we lost the suit...

BUT, WHAT GOES AROUND COMES AROUND.... IT ALWAYS DOES... AND SOMEDAY, they WILL PAY FOR THEIR OWN WAYS, in some form or fashion... we "never" have to take "revenge" for I've seen it happen too many times... THOSE TYPES OF PEOPLE, are taken care of by their own misdeeds. We must just let it go... and "Let God".... I guess would be the proper saying.... How how, some day the "truth" will come out.... it may not "help" us by then, but when it does, it will effect their lives, and then someday they may understand just how horrible our lives have been, and what they have taken away from a marriage, a family, two people, and all we feel we "lost" within those seconds of that accident....


All right, so now I have that part out.... I am taking one step at a time, one breath, one "breath's space", and one moment, day, week... as they come... There is not much else I can do but either "give up"... or move forward... as the song, "too much time to make up, everywhere we turn, time we have wasted on the way, too much water moving underneath the bridge, let the water come and carry us away"  Crosby, Stills, and Young ...


And I have experienced so many wonderful thing in my life, things I felt I would never be able to do... travel by myself to states and states... move to a wonderful city and stay for 5 years, Seattle, snow ski at Wolf Creek Pass CO, see the beauty of Santa Fe, see a baseball game in Phoenix, make a drive all the way to Nebraska to meet a friend, to have many friends that are "miles away" but close at heart... publish not just one but 2 BOOKS, and working on this 3rd one.... dance, sing, play the drums, write music, play the piano and keyboard, go to college and get my Associate Degree, although NOT in the subject I wanted... run a "retail women's store".......see the ocean in FL, in TX (The gulf), the the Sound in Seattle, take a ferry to Bainbridge Island, see the beaches in CA, Go to Vegas, have many vacations I remember as a child with my parents, experience things I thought I may never.... BUT, STILL, I have so many more I want to do, to see, to experience, and of course go to WASHINGTON dc and "stand upon the White House Steps, and tell Congress how I feel about those in need with Lupus, RA,JRA, Osteoarthritis, and many more chronic health conditions....


My "hopes" are that my life gets back on a "new track", in a very good way beginning January 2016. My hope is that I can get back to my writing, and finish my 3rd book, and have it published. I also hope that I can find the "finances" somehow to get my home "finished"... there are so many "small" things that need to be completed, and without lots of cash, that makes it difficult to do. I really don't need a great deal of materials, and what I need is not all that expensive, but it is the "labor", and finding someone to come and do what "I can't do"... I can paint, sand, (have a new idea about my kitchen,bathroom, and laundry room floors that will cost a lot less)... I need some wall boarding put up in the spare bedroom, and in my laundry room. But, the most expensive thing I truly need is a new roof on my house. This one really is in bad shape, and I am very concerned about the Spring and Summer, and stormy weather... plus my entire outside of the house needs painting, which some of that I can do... it is the higher parts, where I have to be up on a ladder higher than I should be that I will need help with. I am going to try and put new "hog wire" fencing up around my back yard, and most of the posts are there, but I need some help getting a couple of dead trees out of the way, and then probably getting the fencing tight enough, plus this back 1/2 acre or so of land that is mine, truly needs to be completely cleaned up. I have a huge pecan tree that died and most of it is down, but it needs to go... plus some other smaller trees be cut down, and trimmed... then I have a piece of an old bus, that was here, when I bought the house, and it needs to be hauled away. It is old, an eye sore, and someone could probably take it with a trailer, and sell it for the scrap metal... so some things are more just time, others I need a bit of cash, and others are in need of assistance, and then of course the roof, that means about 5,000.00 or so....

So, my hopes are that I can stay well enough, to get at least "some" of these projects accomplished as far as the house, I can finish my book and get it published, can get a surgery out of the way I am in need of, and maybe two.... plus just find "myself" a new light, a new path, and follow my heart... go back to dancing, singing, listening to music, and doing what my "body" allows me to do....

My wishes are that YOU, shall also find your path, your light, and your "love" of what ever that may be, whether of the human heart, of a new job, a new place to live, or just doing some of the things in life we tend to put off.... and we never know if "tomorrow" nor the next breath will be here....

I am putting up some pics, and links of some of my "wishes", and my ow hopes for my life the comes with each step I make forward..... Honestly, I've spent way too many years putting everyone else "1st" in life.... and all of what I want, need, or wish always goes on the very back burner... and there shall be some that are not "happy" with this decision... but I am chronically ill, I have many health issues, and I stay in severe pain most days, and I feel like if I do not put my foot down, and begin taking care of ME... I will regret things later as I get older.....


I hope you find the courage to put "you" first... and put the things in life that are important to you, on the "front burner"....




Friday, October 2, 2015

#invisibleillness Blog Post - and talking about the "fight" of our Life!

"Invisible Illness"? A term to some that would or may not make any sense. Usually for the most part, if you have an "ailment",  surgery, are ill with bronchitis, even things such as diabetes, people tend to "see" outwardly some signs of "illness"... a cold, the flu, even something such as hypertension, high blood pressure, will bring some outward visions maybe the person's face tends to be red, or they may show signs of edema, swelling.

Obesity, is a disease. Of course that, or anorexia, those ailments are also able to be seen.

Someone who has a loss of use of their limbs, such as legs, arms, or have an injury severe enough to require a cane, or a walker or wheelchair... all that can be seen....


Yet, when you "see" a person with Rheumatoid Arthritis, Osteoarthritis, Lupus, Chronic IBS, Pernicious Anemia, MS - at some levels, Mysethiana Gravis, Sjogren's, or chronic types of nerve pain, migraines, and the list goes on and on of true illnesses, that are often not "witnessed" by the outside world. Chronic Pain, which can result in so many, many 100's of different ways, may not absolutely "show" to the outside world.

So, when you see a person parking in a handicapped zone, and they have a placard, even though they may "appear" to be "fit as a fiddle" - never assume that is so. Some days, I may not use mine, or feel like I don't need to. Other days, it is almost imperative for me to try to park as closely as possible, especially is a large store, such as Wally World, Beall's, Penney's and you know the rest. I maybe in so much pain, or feel so weak, or so fatigued, it is all I can do to go in, get exactly what I need, and get out. But, outwardly someone passing by, may not see that in me.

I am a recent new member of a church. Some people there know me, or have made it a point to get to know me, thus they can "get" some reasons why I may appear to look one way yet feel totally another.


I've found that even with my own physicians... if I "remotely" go in for a follow up visit, especially with the Lupus, RA and so on, I had better NOT "appear" all that "better"... in other words, you walk in and even though that physician may have been seeing you for years, if you come in dressed in a nice dress, or nice jeans and shirt, have makeup on, and your hair in place... and jewelry on, some see that as meaning you are "okay"... which can be as far from WRONG as possible!!!!

99% of the time I go to my doctors, whether the Rheumatologist, my pain doctor, my PCP, my heart doctor or whomever, I make sure I DO NOT appear like "nothing" is wrong. Now, that does not mean go in appearing as if you are on "death's threshold"unless for real you DO feel that badly, and believe me there are times I do look it and feel it... but if I am having issues that I feel I want them to really HEAR and LISTEN to me, then I dress more casual, usually forgo most of the makeup, and not come in joking with the staff, and laughing it up.... because no matter what "medical records" show,  that "appearance" is what can make all the difference in whether your true concerns, pain, illness, problems are truly addressed or are more brushed off due to the fact you appear to be doing fine....


In fact, I know that most of us say, "Hey, how are you"???? or we are asked that in any setting and especially in the doctors office. I've come to the place that I say, well not really as well as I want to be, and that is one of my main reasons for being here, something is wrong, I am in too much pain or this and that are swollen, or whatever all of the symptoms that have been going on, I make sure I totally explain that, and I do NOT any longer, give that "oh, I am doing okay".....

Plus with "invisible illness(es), they are often just that "invisible"... and I always go with a very long list, of symptom, especially new things, of my mental, emotional and physical shape.... If I have heard about a new medication, or something that sounds as if it could be right for my situation, that I put notes down and I go through each and every one of them explaining, what it is or is not, how long, when it happens, what type of pain it is, and as you can tell, I try to MAKE any specialists, doctors, radiologists... whomever is doing something on me that moment... I get all of the information possible, and I ALWAYS ASK for a copy of the "test", lab, dr. findings, surgery notes, and so forth... I get it all, and I keep it all... that way I have PROOF that this, that or the other happened or did not happen so I can keep up with it, and also take it to other physicians that may need to see me in the future...


The EXTREMELY REMORSEFUL thing about having a/AN INVISIBLE ILLNESS(S)... is that YOU FEEL ABSOLUTELY INVISIBLE YOURSELF!!!!

There are so many times in my life, whether it be at a doctor, having surgery, going through one thing of the other... is that I feel as if I am just a "ghost", another "body" for them to work on... and that the "person" that is there, very real, with every breath you take it is like they could care less what you are feeling, thinking, going through... it is all MONEY, POWER AND GREED!!!! I CANNOT SAY how many times I've repeated those words as of lately.... MONEY, POWER AND GREED!! Where is ANY Sanctity for the HUMAN BEING AND HUMAN LIFE ANYMORE????

Monday, September 14, 2015

IFAA Post and an article about the "Cost of Chronic Pain"

http://www.motherearthliving.com/health-and-wellness/mind-and-body/cost-of-chronic-pain-ze0z1404zhou.aspx?PageId=1


Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....



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