Showing posts with label #chronicpain. Show all posts
Showing posts with label #chronicpain. Show all posts

Tuesday, January 5, 2016

January 13, 2016 DEADLINE FOR YOUR COMMENTS ON THE CDC AND PAIN MEDICATIONS AND CONTROLS...

I know I sound like a BROKEN RECORD!


But, it s IMPERATIVE WE get our comments in on this CDC Docket about Crhonic Pain Medications, and how they want to "tell what doctors" can and cannot prescribe and when.... PLEASE GO IN TAKE A MOMENT TO COMMENT, RIGHT NOW THERE ARE ONLY 1803 COMMENTS... WE NEED MORE LIKE 18,000!!!

YOU DO NOT HAVE TO GIVE YOUR NAME IF YOU DO NOT WANT TO and still post your comments.... there are many physicians that are also posting because THEY want to TAKE CARE of Their Patients and not have the CDC breathing down their necks about what they "can" and "Cannot" do as far as patients go...

The DEADLINE IS JANUARY 13, 2016!!! So Time is of the essence.... PLEASE TAKE A MOMENT TO COMMENT!!!! Rhia


The Link is:

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=PS;D=CDC-2015-0112;refD=CDC-2015-0112-0001

 

 

Sunday, January 3, 2016

Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Thursday, September 3, 2015

Pain Pain, and more Chronic Pain - "Legitimate" Pain Patients and "Good" Pain Physicians Suffering from the few who Abuse!


This is a HUGE GROWING Problem for SO MANY of us, with "legitimate" Pain problems. I realize "some" abuse it, but WE as true patients should NOT be punished for those who abuse.... and the ones the at abusing, will find it one way or the other for the most part.... I also feel sorry for the Pain Doctors, that truly are also legitimate... they continue to have more and more hoops to jump through, and put their PATIENTS through.... which is difficult on everyone!

This has always just irritated me to no end, when I read articles, such as this one! We have so MANY "legitimate" pain patients, that would not be able to have ANY QUALITY of LIFE, hence without their medications.

Yet, due to the "few" either "fake patients", or doctors who are not in it, for the REAL Patients, but are in it for their own GREED, have made many of us go through so much paperwork, go through so many questions, go through hoops and hoops in order to receive our medications.

I totally understand "addiction" by those who abuse meds... but, they will abuse, no matter how they get the meds... whether they by them off the streets, or through the black market... they will get them....

Being that is it NATIONAL PAIN AWARENESS MONTH!, I feel even stronger about standing up for everyone who totally is in pain, and like myself, I would never be able to do much of anything if it were not for my medications.... and believe me, I've been with my same Pain Specialist, now for t least 7 years or so, and I have nothing to hide - NEVER have I "ran out of meds early" or lost a prescription, and so forth... never!

Years and Years ago, when they came out with the "Stadol" inhaler, especially for migraines, I had picked one up from the pharmacy on my lunch hour. Well not thinking I left it in my car by accident and it was a very HOT day in Texas.... so the medication "siphoned" itself out of the bottle due to the heat... I was so upset, because I felt like even back then, I may have problems getting my meds. But, I contacted my pharmacist right away, and called my doctor, spoke with them both, I took in the bottle and container it came in, and allowed them to see what had happened. I got another bottle no problem... but in all of my years as a patient with chronic pain, I've seen even myself have issues with either a pharmacist, or one time a doctor be fine and give me my meds, and yet in a month or two, say they can't give that anymore, or change the dose etc... well it is because of being so totally "frightened" by thinking they could lose their medical license, some are just in fear over patients and pain medications.....

Here is the article... and i am sure you will see by what this says... it can mean Disaster for those who DO NOT abuse their meds...









 http://consultqd.clevelandclinic.org/2015/02/heroin-prescription-drug-addiction-a-full-blown-public-health-crisis/?utm_campaign=qd+tweets&utm_medium=social&utm_source=twitter&utm_content=150216+heroin+prescription+drug+addiction+public+health+crisis&dynid=twitter-_-qd+tweets-_-social-_-social-_-150216+heroin+prescription+drug+addiction+public+health+crisis







3rd Day of the 30 day Challenge for the support and promotion of National Pain Awareness Month

I am taking the "30-Day Challenge for pain awareness".... which today is the 3rd day. Yesterday I wore "blue" along with a sign in my car from a photo I made like this one. Today, I am supposed to write down what I would be doing in life if, I was not sick, and have chronic pain issues. Well, first of all, I would probably be doing something in the medical field. I had wanted to be an RN ever since I was in my teens. But, now, if things for me health wise were different, I could see me being a researcher, and doing research on illnesses, such as these autoimmune illnesses, Lupus, RA, Sjogren's, Raynaud's, and so many more, hundreds, and would be trying to find out the "origin" of what causes them that hopefully would lead to a way to stop their progression OR possibly have a way that NO ONE ever had to even have them in the first place. I would be "more active"... going out more, taking my Mom out more... and doing things with friends... right now honestly, I don't have many "friends" as far as here near me... not those that I could go out to dinner, shopping, a movie, or even to the casino with for a day or overnight.... And the reason for that is these illnesses. I never know from one day to the next, if I will wake up feeling "okay" or wake up feeling like as my Dad would have said "pulled thru a knot hole backwards"... LOL... then there are days I wake up fine, but in a few hours I feel horrible, or can feel like hell when I first get up, and within a few hours, feel better... these horrid diseases, which 99% of them include some type of chronic pain, take over your life. Even though many say that can win the battle over them, and I do for the most part, they still have their way of putting you on your butt, even when you try your best to fight against them. I would also already have my 3rd book published, my home would be "more completed" as far as all of the DIY stuff I've started, and some I can't do simply because my health in one way or the other puts a damper on something. We, even myself, before the AI illnesses, took many things for granted... even though I suffered migraines since the age of 17 yrs old, I still could more or less "have a life"... go out, go to college at night, work, do lawn work which I love, and just go do things like shopping or eating out in Dallas, or going down to San Antonio to the River Walk for a weekend... now those things are either almost impossible, OR they are a bit more difficult for me to plan to be able to do... just the stuff here at my house, painting, laying the floors in my kitchen, bath finishing out the walls in my bath, and wiring the lights in, and things like that, some I can do, and others my body no longer allows me to handle. So, a "new normal" (which by the way is kind of one of my "mantra's".... would be to enjoy and do, all of the simple things I used to be able to do, and now I realize that my life has totally turned around and what was "normal" just a few years ago, is certainly not anymore.... 

If you would like to participate in the Challenge Or just find ways to promote "Pain Awareness Month" you can go to :

http://uspainfoundation.org/30daychallenge.html

And do your own challenge or find ways you can let others know about just how much chronic pain can change your quality of life....


#ITookThePledge  Twitter

Tuesday, September 1, 2015

It is OFFICIALLY September 1st, National Pain Awareness Month 2015 begins.....

Morning everyone here at my FB "family"... It often feels more like "family" at times when I come to my page here, along with my blog. There are several of us, that find comfort in one another, especially when the "storms if pain, illness, and life" begin to be overwhelming. For myself, this entire year so far, has not "turned out" at ALL like I had "planned"... Of course I should already know, after 55 years of living, that "Rhia's Law" is that if it will be COMPLICATED, COMPLEX, CONFUSING, FULL OF DRAMA AND STRESS, DIFFICULT.. just to name a "few" of my thoughts, it shall be happening to ME. Nothing ever comes easy for me... as much as I would love it to, and I've often wondered why, life has to be so darned complicated - as all of us with any type of chronic illness and/or chronic pain, "Living Life" is never "easy"... we battle with illness and pain, we battle with medications, doctors, pharmacies and most of all insurance. We battle just to get up every morning, and try to be our best, whether that means sitting on the sofa all day, being in bed all day, or up and about with errands, work, and the other daily things we accomplish in life. I had just been reading in a local small magazine that usually continues interesting information about our doctors, or different places here involving health... therapy, gyms, alternative medical practices, and the like. They also usually focus on the local people, that either have a beautiful home, like something that may be in the "Historical District" or a new group for different types of illnesses... one such here I was just reading about is Parkinson's. Now even though we are educated about many different ailments, we sometimes tend to think that diseases like, Parkinson's, Dementia, Alzheimer's, arthritis, just to mane a few, are "elderly folks diseases"... yet, right here in our community. One of the reasons why I decided that I wanted to participate in US Pain Foundations, "Beautify in Blue" campaigns here in my home town, is exactly what I have wanted to do for a long while now, with Lupus, RA, Sjogren's, and those living in chronic pain... to begin to educate people here, to bring more awareness, rather than rumors, or misinformation when it comes to any type of severe disease that is all too often "chronic" in nature, and it envelopes and takes away the "life" that you thought you would have. When I began years ago having very severe migraine headaches, there are not a great deal known about them. The doctors for the most part, would either not really know what to do, or give you pain meds... that later ma have been considered "habit forming" and such. But, I worked MANY years at several different jobs, and in one way or the other, the migraines interfered with my job and my life. I wanted to be a nurse, and had my sites on that profession for many years. Yet, when I finally had that opportunity, the headaches would have been an interference in my schooling. So, as badly as I wanted to pursue that career, I knew it was not in the cards for me. I did go to college mainly during the evenings, after work, and got my AD, and the most proud moment is when I was inducted into the "National Phi Theta Kappa Honor Society at the college I attended. I of course still have my lapel pin, and even had special lettering made and put it in my car back glass... I was so thrilled.
But, I still fought around the damned headaches... then new medications came out, none of which I could take, or they simply did NOT work... I always tell this one story, I had to go to the ER one night with a really bad migraine. It had been going on for days, and I just could not get it to "cease and desist" ... the ER doctor, I think rather than giving me what they usually did, decided to give me "Compazine". Well, this nurse came in with a pretty large syringe of medication that I believe was to go into the IV they had started... It did not take long, and I began to feel "odd"... it was just not working at all in fact, and I just felt like I was going "nuts"... so rather than the doctor trying something else, he told her to give me yet another round of it... I literally got up, pulled the IV out of my arm, wrapped it up to stop the bleeding and I left... I was having some kind of horrible reaction to that medication, it was NOT working, and I certainly did not need anymore.... So, those types of events in our lives, makes us want to stand up for not just ourselves but others just as we are... ILL and yet some physicians just DO NOT either listen, or they prefer the patient to be quiet, or there is just too much misinformation being spread around.... SO, TODAY and for the next 30 DAYS I hope you join all of us in promoting the correct information and awareness about Chronic Pain....
 
 

 

Take The 30 Day Challenge by the US Pain Foundataion

 
 
 

Saturday, August 29, 2015

Updates on my "Lumps" cellulitis, Surgeon, Removing the Lumps, RA, Lupus, Xeljanz, Mom' injections - my RA giving me mortal heck with my fingers, hands, wrists... & more...

A quick note - I am BACK on BOTH Rifampin and Bactrum now for the FOURTH time! I did FIND a Surgeon Finally that takes my insurance! But, he could not get me in until a week from yesterday, so next Friday! In the meantime, the 1st LUMP began to show "outer" signs of "infection I thought. It was NEVER red or all that sore through the whole ordeal. But, last week about Monday, I began to notice not is it only reddened on the top of the skin, it is also, seemingly "puffy" and sore to the touch. The "smaller lump" is now also a bit larger, but also sore as heck to the touch. In fact just walking sometimes makes them feel tender and sore. So, I called my PCP yesterday and he put me on another round of antibiotics until i can get into the surgeon.

ALSO, some GOOD NEWS FOR A CHANGE! My ECHOCARDIOGRAM came back with a "small bit better as far as my heart function from the last one" which I've not had one since 2011... and I was scared that it might be a bit worse, so hopefully that is good news... but you also hear all the time of people having their heart checked out, having the echocardiograms, ad all seemingly well... then a day or so later, they have a heart attack... so I am trying to stay within the "positive" aspects... also I finally got the CHEST X-RAY!!! I thought that mess would NEVER get straightened out...but it is done, and the report should be at my Rheumy's office early next week. SO, my HOPES are that we go ahead with the Xeljanz BUT I don't think they will put me on it, until we know for sure what these lumps are... if infection, then NO until it is completely gone... and hopefully - due to my RA, being more severe than ever, I am losing a great deal of grip, fingers are so stiff, and visible swelling in my hands and some in my wrists and ankles... along with pain, that had not been this bad... but I have not taken any Orencia now in 5 weeks... still taking everything else... but I fear the Orencia also due to not knowing what these lumps are. Also, my MOM celebrated her 80TH!!!!! Birthday yesterday!!! But, she is having heck with her stomach... we did have a "bug" a few weeks ago... but hers seems to be something else... so we did not even get to go out and eat, and I so wanted to take her for at least the day to celebrate... but she is just not up to it..... Okay more later.... ;)

Tuesday, April 21, 2015

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others. 



Tuesday, April 14, 2015

Dealing with Chronic Diseases and Chronic Pain that seems to steal your entire life...

Sometimes I feel as if I write the same old song and dance, over and over again. Yet, as I was glancing as some email newsletters I get, once again for the Thousandth time, there it is in my face, talking about not being able to travel "too far away from home", or how these illnesses take you so far down in fatigue that the simplest things you used to be able to do, now are like monumental achievements.

I always try and bring myself back to "Okay, it could be worse"?! Well, what does that mean for any given person... worse as far as I am not in the bed 24/7/365? Worse that right now I am "well enough" to not be on the sofa for many hours of the day? Worse as in, I can still walk without a cane or a walker, I still have my eyesight, I still can talk, and okay all of that "same old stuff". Worse as in, gosh there are so many others out there that have it "worse"? That is dependent on who is viewing it, at any given time. For one person that might mean a "bad" day or two.
For others it may mean they had to cut a vacation down and come home a day early, or cancel dinner plans for an evening, or decide to order take out because they were too fatigued to cook. I've "entered" a couple of different items for this month. One is sponsored by the Sjogren's Foundation, due to April being Sjogren's Awareness Month. Each day we must think of "ONE" word to describe "Sjogren's". The other sponsored by WEGO Health, is April is "Writer's Challenge Month". Each day they give us a "prompt" and we are to write about how that particular thing effects us. Some medical and some just life as it is stuff.

Over the past 8 or so years, once all of the autoimmune issues came to light, I had high hopes that with a more "specific" diagnosis (or more than one) between the doctors, myself, medications, and taking care of "me" would mean finding a much better quality of life in my future. Now, each day, I come to terms with the pure and simple truth. Unless something miraculous happens in the thorns and arrows slung at all of us with these hideous illnesses, I nor anyone will ever find they have a "better quality of life." I think we "fool" ourselves into thinking, "we must remain focused on the good, on the "half full" rather than half empty glass. We must think that against all odds, look how many others have out smarted all types of "basically deadly" diseases, and are here to witness to us that it can and does happen.

Yet, me putting on that happy face, yet inside deep inside both hips it is like a ball of fire inside, churning, aching, burning, and how do I "ignore" that kind of pain? Then I find out last night, and I mean very late evening, that after waiting 2 weeks to see my orthopedic doctor who has done both knee replacements, and much more now does NOT take my insurance? And the woman on the phone was an absolute witch. When I began to ask about me paying for the visit, she snapped back at me, an office visit is "$175.00"! Well, in the first place they should have KNOWN right away, and in fact when I called and made the appointment, she even looked at my file and saw that I had the insurance and never uttered a word that he was no longer taking it! Well, that leaves me in a world of hurt, now over 2 weeks. If they had told me that in the very beginning, I could have either tried to find another orthopedic doctor, OR just paid cash for the visit and the injections.

I was still so totally upset by the entire ordeal, that I called his office again this morning and spoke with HIS nurse/office manager. She told me the "visit" for me since I am an established patient is $75.00, then the injections are $100.00 each. So, the lady from the entire doctors building didn't know the circumstances, and didn't realize I had been seeing him for many years. I can also say that if I had been able to get hold of him, he would have charged me less, and did the injections. Him and I have been through several situations involving my own self, and then a surgery he did on my Mom, so he is well aware that when I ask something or say something, then it is something I am extremely concerned about.

Then you take this new stupid insurance, which means if I see another specialist that I've not seen in a long while, then we have to go back to square 1 and get a "referral" done to satisfy the insurance company. Fortunately my neck and shoulder orthopedic surgeon IS taking the insurance!!! So, even though I have to wait another week, which sucks because today is more than pain, hurt, despair... almost intractable pain in my very lower back and especially my hips, that even higher on my waistline hurts, at least I can see someone I know and trust. He has a "jackass" bedside manner. But, if you overlook that, he is EXCELLENT or more than that, THE VERY, VERY BEST Orthopedic Surgeon in the US, as far as I am concerned.

When I was first sent to him due to needing a complete reverse shoulder replacement, of which not many specialists do them, we kind of got off on the wrong foot. He is one that prefers an "less educated" person, as far as their medical situation. He is not thrilled over someone like myself, that comes in, with all of my own home work done, and knowing just about what the issue is with me, then telling him. He is not very happy about a "patient" that he feels thinks "they know" more than he does. Of course I don't BUT, when it comes to myself, my own surgeries, illnesses, and all I've been through in many ways, I am almost an "expert" in some things with my own stuff.  Well, when I went in and seen him for the shoulder, gave him the "low down" on the entire mess I had been through, where the pain way, how many other "scoped" surgeries I had, and in the last my other orthopedic surgeon told me that there was "nothing else" their to repair. The next step HAD to be a "reverse shoulder replacement". And it took weeks and weeks to find one. Then same with my neck. Right after the shoulder surgery, within 3 months I began to have once again a "similar" issues with my shoulder blade. As I again had done, researched it all, and the pain "seemed" to be coming from my cervical spine. Well, he did a special CT on it, since I can't have MRI's, and that CT was terrible. The tech that did it, was not in the right place to do business, and he really was NOT elated at all. He "went off " on me, stating just because I do research online, does not make me an expert, and he really got pissed about my "input". So, I am not sure what happened, but within a week or so, he decided my "theory" maybe right. Since my other orthopedic problems never do "show" on CT's, MRI's... whatever kind of "scan" they do, it is always MUCH WORSE in that joint, than what it showed. So, that was my continued premise. He decided that I could be right, thus he set up to have me on the operating table, and do a 4 level disectomy, and also fusion to at least two of them.

Well, as sure as I am writing this, for the most part, what I had "said" and drawn in my own conclusions, were almost to the "letter" when he opened up the neck and began to see the issues. That is why I say, he is an excellent physician, one of the very best in orthopedics, yet his bedside manner sucks... and once I could look past that, and HE could ACCEPT that in some ways I COULD BE correct, it worked out fine.

Thus, having to wait yet another over a week to get some relief sucks.On top of everything else, I am not so sure about this "forminal" lumbar injection that is supposed to be done Thursday. Now I found out, it is not the "anesthesia that they concern themselves with, as far as the patient driving home. It is the epidural injections in themselves. In that part of the spine, it may make my legs feel a bit "heavy" or numb a bit after its done. Not everyone has that, but some do. Thus the reason not to go alone. But, when you have no one else to drive you, what the hell do you do? Forget it? I mean Mom and Jim both can go, but when it comes to driving, that will be me. Neither of them cam drive to Dallas and back.

So, now I also know this orthopedic doctor could also do those injections too. So, do I hold off, and then have then done later by him...


These are the very examples of why life deems itself much, much more frustrating and difficult when you are suffering from chronic illnesses and/or pain... ALL of it is a "PAIN" in one way or the other....

Friday, March 13, 2015

Changing of The "Plans"... asking for positive thoughts....

Please keep "positive" thoughts my way as I try to delve into my 3rd book. I've been working on it off and on for a long while, and really began to watch it somewhat take "shape" after the first of 2015. But, I was also trying to juggle writing it, all of the errands, bills, groceries, shopping, house cleaning, cooking... and of course that list goes on and on... along with all of my activist, advocacy, Ambassador, and volunteer work. Now, I have tried to come up with more ways to make some of the daily "drum" of life, play a different tune for me. I've re-organized (or I trying to) how I deal with the daily things that all of us must do, and also be loyal to my own blog and book... PLUS remain a huge VOICE as  I feel I must in the realms of my advocacy, activism, volunteer, and ambassador work as well. I never want to "negate" how critical I feel it is to give true "voice" to those out there with these often daily, chronic illnesses, pain, and make sure I am doing my part to help in that also. So, as I try to "coordinate" more, "combine tasks more"... and give myself plenty of "quality time" to write. I can't write 10 sentences, then have to get up, leave, run errands, go to the market, do laundry, and 4 hours come back and pick up where I left off... my mind just does not work that way anymore... with all of the brain fog, as well as stress, and the "business" of life, I have to allow myself to "tune out" some of those things, and let go of some of the stuff I tend to lay way too much priority on, that I need not. I don't have to have every dish, every towel, every floor, every inch of my car.... all in "perfection" .... some of that type "A" personality, must go... I've had to face that my mind just won't and cannot deal with way too many "irons in the fire" at once. When I do that, then I am more concerned about "doing" other "stuff", then do the "stuff" I WANT and need to do... LOL... no that does not mean I am going to have bare cupboards, do no cooking, never clean, or do laundry, not do all of the daily items, but I can do them in a bit different manner, thus freeing a "chunk" of time up to write, to do my advocacy work, to work on my blog... and so forth... thus that is my plan, and goal... of course like all great ideas, that may not come to fruition either... but I can try... plus I've tended to "neglect" the fact that I am in a GREAT DEAL MORE PAIN, than I wanted to admit to myself and my doctor. There is something going on, whether related to the RA, Lupus, my hips, osteoporosis... or what ever... that is causing me a world of hurt, that was under control for a long while. So, that may mean reconsidering my "autoimmune medications"... and also opting for more medication coming to me from my pain pump, in another small increment. I had it put in around October 2010... and for the 1st year, we "adjusted" it almost monthly... then we got it pretty well working as well as it was going to.... and 2 years ago, I went through another spell, where I was in "intractable" pain... again lower back, hips, legs... we adjusted the medication then, and there has not been a change since that time. So, I did tell my specialist last time he refilled my pump, that I was "jumping up" on the scale of pain... and he did "up" it a tiny bit... which is always how they have to handle it... but even with that, I am still in too much daily pain... and even though I and everyone knows we are NEVER completely "free" of pain... it just does not happen... so... I am going to ask him next week - Jim has an appt with them on Monday, about coming back in and having him "Up' the dose again. From there, I will be probably working with my Rheumatologist on trying a different "combination" of meds for the RA/Lupus.... but I really don't see him until May... yet I can email him, and sometimes he makes changes in between visits, since he is so swamped with research, teaching and seeing patients... that our visits are usually far between... Anyway... that is where I am at this moment... and I shall put one foot in front of the other... (by the way I have MY BOTTOM DENTURES FINISHED A WEEK FROM TODAY!!!!!!)))))) THAT WILL BE A HUGE HELP ALSO.... Thanks all... Rhia Steele​

Thursday, March 12, 2015

Advocacy, Ambassador, Activist, Volunteer - All out of a Desire, Passion and Compassion to help others... and the heart of my own dilemma this Annual Arthritis Summit 2015

I have something to share with my dear "Online" and "Off Line" Friends. Each of you have been and continue to be a true inspiration to me. Whether it is about something I write, my books, poetry, my blog, my pursuits as a patient with several chronic illnesses and chronic pain issues, wife, now also a caretaker for Jim after the accident, that will be a year ago March 26th. It seems impossible but most of you recall I was actually at the Arthritis Foundation's Summit on Capitol Hill last year, when I got the "call" that everyone dreads... an accident, all the way back in Dallas, my husband. Basically, "ran over" by an 18--wheel tractor trailer from behind. I am STILL and always WILL BE EXTREMELY THANKFUL for the Kindness, the compassion, the friendship, and the honor that all of the ones there at the Summit, as well as those in the Foundation who helped me get aboard a plane in DC just hours later, headed back to Dallas, to Baylor Hospital. The outcome I was not sure of, and I was so very blessed by those who directly helped me that fateful day. Chris Nieto​ was and still is an angel. He helped me with everything from taking all of the information down from the Emergency Room Trauma doctors, to making sure Laura helped to get me board the plane, and he happened to have been flying back to Dallas himself, so he, Serena, and others from the Summit gave me such a "foundation" to stand upon, as my entire world literally crashed down around me. I look back, and I crumbled to the floor as my daughter told me about the wreck, and Chris began to read off the "numerous" injuries Jim sustained. From almost EVERY RIB broken, to his back basically "broken in two" - - from C-7 through T-7 back surgery done within hours of the accident. A concussion, fracture of the shoulder, possibly a leg, a "nick" in the aorta, and the list just read on and on.... Anyway, all of 2014, we spent either with him in the hospital and the rehab hospital over 3 months. Then several more months of going back and forth several times weekly for rehab... and just a score of doctors visits... plus of course all of the "red tape" that yet has not been settled...

So, moving forward... I was HONORED to be given such an incredible title in my advocacy work, as "Platinum Ambassador" for the Arthritis Foundation. I spent time when I was not either ill myself, or having all of my teeth pulled, and replaced, or any number of other things, to be able to attend the "conference" meetings, make some relationships with some of our Congress People, and do all I could with a true passion to HELP ALL of those out there like myself, suffering from these dreadful diseases....

After my DC visit in 2014, I was so totally elated and felt so privileged to perform one of my "long time" dreams, and that is to "stand on the White house steps" and TELL MY STORY! Well, that dream came true last year in March, 2014. My plans were also to BE BACK  this year in just two weeks, and again be able to STAND with such an INCREDIBLE Foundation as the Arthritis Foundation, and be a part of their wonderful advocates!. When I found out at the very end of 2014 in December or so, that I WOULD BE ABLE TO GO back to DC I was on "cloud ninety nine"!  Of course, my health has waxed and waned, I still have yet to COMPLETE my entire ordeal of these "mini dental pins" in my bottom dentures... due to all kinds of complications, including an "oral-maxillary communication" in other words a "hole" between my mouth and my sinus cavity... and infections etc... yet, I had bought new boots, had all of my clothes lined up, my "ducks in a row" all ready to go back to DC in two weeks!!!

Well, these illnesses "don't care"... they don't care if YOU have PLANS... they don't care if you have to "miss" something you so want to do, they don't care what else is going on in your life...  if "they" decide you will be sick, then sick it is... YES, you can try and push through it, you can try to ignore a flare, or not deal with medications, or not rest, and just do as you wish. But, when it is time for a chronic illness/pain issue arises, it WILL put you DOWN... and you have no choice... you cancel parties, plans, dinners, you don't celebrate holidays when you should, or you miss birthday plans... as we speak of often in the "spoon theory"... you have so many, and you can "borrow" a few... but when there are none, there are none.... thus... due to my own personal bout with several health issues due to the RA, Lupus, Sjogren's, and so forth, my "health" has been not so great, and I've been trying my best to "ignore" the ugly truth... but much to my disappointment... I am still not well, I probably am going to go through some major medication changes, now I am FINALLY going to have the bottom dentures pinned... after all these months of waiting... and not being able to eat much, or if I talk much, the bottom ones slip and slide around thus, I have heck even keeping the top ones from slipping also... my pain level has jumped through the roof. We are not sure if it is lower back disc compression fractures due to the osteoporosis, the RA and my hips, other leg, nerve issues, or what... plus I have just all of a sudden soared in having several Lupus Migraines... they have gotten so bad... and with Jim not able to drive, and his own medical issues with the  Paraplegia causing bad balance problems, where he can't bend forward, or he would fall, he can't go down stairs without help, there are just many things we take for granted daily, that after something like his accident, are things that are just not possible, no matter how small they may seem. He is not able to get things if they are pushed back far into the Fridge, or in a cabinet. He can't climb up to get things out of our very top cabinets... and so that makes it also very difficult for me to be gone for several days... we thought we had that all taken care of, and that person now is having some other family medical issues, thus I don't have them to come and help him out while I am gone, as we thought. So, between all of the "little things", the big "elephant" in the room of course is... I with very deep sorrow and disappointment, must bow down and not go physically to the Arthritis Summit this year. It took me over a week of crying, kicking myself, feeling guilty, being mad, sad, and all of the other billion emotions wrapped around this for me to just have to admit that I am just not physically able, and with family things also, to go this year. I will of course be ON BOARD 500% as and "E-Summit" Attendee... and PLEASE ALL OF YOU take a moment, and go to the link I have provided several times and send in your letter. They WILL BE HAND DELIVERED to YOUR Representative. So, it is vital you get to say your own personal things about these dreadful and unacceptable diseases. I hope to be able to "pinch" myself, and wake up from this nightmare... but no - not a nightmare... it is just the truth and I had to face it... one thing I have "gleaned" (honestly many) but one thing that I have learned about my personal advocacy, activist, volunteer and ambassador work, is that it comes from A VERY DEEP PASSION AND DRIVE and it just as important if not MORE IMPORTANT than a "regular job" People that do this type of thing do it from their hearts, minds and spirits.... we "live" to help others... no "glory"... no "personal gain" honestly... but out of the sheer passion of knowing WE HELPED - WE GAVE VOICE to a patient, or patients... that is WHY MOST of us do this... out of the desire, love and compassion to help others feel better, and live a better quality of life....


Rhia

Please see this URL to SEND IN YOUR LETTERS!!!

http://www.arthritis.org/advocate/advocacy-summit/virtual-summit/letters.php?utm_source=LetterWriter&utm_medium=email&utm_term=Advocacy&utm_content=body&utm_campaign=031115
 

Sunday, January 11, 2015

Having A Life of Chronic Pain & Living It is no "Piece of Cake" - not even in the movie...

After watching the trailer of this movie, reading about it, hearing what Jennifer Aniston said about it in her own words, then to see that Ann Palmer the President and CEO of the Arthritis Foundation is not just endorsing the movie, she actually attended a "preliminary get together" about the film with Jennifer Aniston, Stacey Courtney, the stunt coordinator in the movie, that took place in LA, when the limited screening of the Film came out on Jan 6th. Aniston talked about things she prepared herself for in order to make the movie, which included gaining a bit of weight, not exercising and going without makeup in order to "get into" the character role. Stacey, that was like a mentor to Jennifer had also been in an accident that left her with chronic pain, so she was able to help the movie portray a great deal of the "real" life of those of us dealing with chronic illnesses, diseases, and chronic pain....



Here is the URL to the information about the movie, which is presented on the AF website:  http://www.arthritis.org/cake/

I feel that this movie, will move many of us into tears... for "we" are going to know the all too familiar events that take place. I've heard she fits the part very well, and through herself into the character, by doing things or not doing things, that we also totally understand. Many of us find there is not enough energy or spoons, of whatever you use to talk about the amount of energy you have for any one given day... most of the time doing makeup and hair... get left off the days events because we know if we do some of that, the energy we need for other errands, doctors appointments, groceries... or going out with our friends and family. I am truly anxious to see this, and now after Ms. Palmer from the AF is also announcing it on the AF site, I found it even more intriguing.

I believe the public opening is officially around January 28th or so... I just hope it does portray a very detailed and accurate view to others, caretakers, family, friends, and even strangers as to why we truly in our everyday lives live with. You can explain and explain, yet at times unless that person is also not able to understand all of the rawness, the vunerable ways we all too often feel when the pain beats us down so much, that it is difficult to think about another day of feeling like you do. It seems EVEN WITH the PAIN PUMP, the "breakthrough pain medications", muscle relaxers and everything else we ingest, or do, from exercise, to aromatherapy... to going to the Chiropracter, to acupuncture... creams, salves, lotions, you name it to find some kind of relief from the moment to moment night mare of ongoing pain.

                                      

http://www.arthritis.org/about-us/news-and-updates/cake-a-painful-slice-of-life.php





Thursday, December 11, 2014

PLACES I FOLLOW IN MY TWITTER - "Twitter" Hashtags...

As our "methods" of finding information online, or passing information around online continue to evolve, it is sometimes almost impossible to keep up with what everything means... we now have "twitter", and also "hashtags", we have Facebook groups, pages... we have Pinterest, blogs, Linkedin, we can "follow" some page, group, non-profit, we can be volunteers, Advocates, Activists, Ambassadors, we can be the ones ill with chronic pain, chronic illnesses, and the thousands of online sites you can get to for information about everything from doctors, medications, Pharmaceutical Companies, we can find kin folks, friends, classmates, ancestors, family trees, online books, online instructions... we can order online & get things in email, or by "snail mail", or pay bills online and have it in "real time" post to our accounts.

Our "daily" online world changes what seems like every moment. If something happens in a country thousands of miles away, we can know it in an instant. We can save hundreds of thousands of lives in knowing about large storms, violent eruptions, medical history in the making, watch surgeries online, watch directions of how to online, see our friends and family online, talk to everyone online.





I find I have a difficult time keeping up with exactly what some of our newest "ideas" mean. About the time I "almost" figured out Twitter, and hashtags, then this new "hashtags" main came out, and I am trying to figure out the proper way to use them. It seems they can be an "instant link" to every "search term", site, Facebook page, everyone on Twitter... technology in the making when you breathe in and out, something new has happened. So, I am "listing" some hashtags that you might find useful in a general sense of your searching for different things.

I will add to this list as I go along. In fact I may put this into a different "page" so it will be on top and available for you....

           
#AARDA

#Chronicpain

#sjogrens

#partD

#RA