AMA needs YOUR Assistance for Congress and the Health Care Bill TIME is ASAP!!!

URGENT!!!!!

Last month the House of Representatives narrowly passed the American Health Care Act (AHCA), legislation that according the non-partisan Congressional Budget Office (CBO) could result in an estimated 14 million Americans losing their health care coverage in 2018 in addition to a projected cut of more than $800 billion to Medicaid over the next decade. Now it's the Senate's turn and prospects for an improved bill that addresses the concerns expressed by physicians from across the country look grim. As early as next week, Senate leadership is moving forward with plans to vote on a bill that has not yet been made public nor scored by the CBO. Physicians stand united with their patients in opposition to any legislation that would cut coverage for Americans with health insurance, take quality health care coverage away from those who have it now and increases out-of-pocket health care costs. Contact your Senators now and tell them to vote NO on any legislation that would make coverage more expensive for millions of Americans.  It's time to put patients above politics!

https://www.votervoice.net/Shares/BAAAAAoYACnXMAUIN3Q7FAA

"KRATOM" Anyone Else know about this "potential off the counter" chronic pain medications that seem to help many conditions...

Here are a few links below as well as some information I've just received from one of my friends on Facebook...

It was something I had never heard of, and for the most part, it appears that MANY, MANY DOCTORS have no clue about this...


https://www.painnewsnetwork.org/stories/2016/9/21/survey-kratom-very-effective-for-many-chronic-pain-conditions


https://www.scientificamerican.com/article/should-kratom-be-legal/


My FIRST QUESTION would be WHY HAS THIS NOT COME FROM THE MEDICAL PROFESSIONALS, AND SINCE IT IS SOMETHING NOT "designed" from the Pharmaceutical companies, thus they lose out on huge profits, is that the REASON IT IS BEING KEPT SO QUIET???

It seems there should be many of us questioning this "substance" with our doctors, and finding out online, and through anywhere we can about it...


This is the first time I've heard of it, and the "DEA" quietly said it would not be shown "beneficial" for chronic pain, BUT IN THE ARTICLE FROM THE PAIN NETWORK, LOOK HOW MANY PEOPLE DID NOT IT EXTREMELY BENEFICIAL!!! 

I'm not saying I am FOR THIS OR AGAINST THIS... since I've been made aware just today, I a interested in knowing the safety, if it works like the article says, the side effects, long term effects if any, the cost, and so forth.....

CONTINUED FROM "Delving Into "hopefully" a New Outlook on Rheumatic Illnesses & finding Ways to get the word out to Others... Possibly a New BOOK, A new "Non-Profit" to be active with, and a "new attitude" for myself "Relationships" Chronic Illnesses, and Life

It's a mixed emotional painful weekend last few days for me... my entire BODY hurts so badly, and I am not sure what the hell is going on. Even MANY of the "joints" that have been completely replaced hurt so badly, I a not sure what to make out of it.


I continue to blame much of the severe pain that sometimes occurs on the humid, wet TX weather. Not the "heat" so much, as it is the basically HIGH HUMIDITY we have most of the time, whether hot or cold here.

You would think I lived much closer to the coast the way the humidity is so high here. Yet, I live at least 6 hours from the coast, if I went directly to Houston from where I am.

So, "the region" is not to blame for sure. We just happen to have a great deal of very "wet, damp" even some mornings the lawn will appear as if it has rained the night before because everything is so "wet and the moisture just "hangs" almost in the air.

Yet, I have to believe that there is more to what I am feeling than humidity. It's gotten me hurting so badly, that it matters not what I do or don't do, the pain is almost unbearable. In fact it can be down right frightening.

When you are already "autoimmune compromised" with RA, Lupus and so forth, you are on medications that are "risky" to say the least for severe infections, and sometimes even cancer that could develop although the risks are very low, I fear "infected" joint replacements, or something that has gone "wrong" with the implants... Yet it's not just those joints, it is all of my other joints, muscles, my lower back, headaches, every inch of my body seems to just ache deeply down almost as if my "bones" were in pain.

I've researched the subject many times, because this has happened to me over the past at least 10 years off and on, with really no way to find a good explanation or a diagnosis to put your finger on and say OKAY, "this is what's wrong"....

As I've told my pain specialist before I could literally...

Alas MONDAY MORNING ARRIVES, AND GUESS WHAT??? HIGH HUMIDITY, STORMY WEATHER, AND A "THICKNESS" IN THE AIR that feels like you could "push it up and sit down on it"....

So, no one can say "weather" does NOT effect many of us very dramatically especially when joints, bones, muscles, and chronic pain and chronic conditions are present....

Trying to "Balance" All of Life's "Chores" When Chronic Illnesses and Pain, Plus surgery recovery is supposed to be "PRIORITY"

I feel as if all I do is gripe, fuss and moan about my Cervical Neck Surgery. Yet, since it was not the "usual" cervical surgeon most Orthopedic Doctors see and do, it has became something that really needs to be discussed...

I know my son asked me about a week ago, Had I known just how involved and how much time, toil and complications were going to happen, "Would I still go through with the surgery?} Well, the first answer you feel would be HELL NO! But, of course pain, and all of the "symptoms" that happen when a neck is so severely disintegrated, of course my answer was yes. If I had not had so many "issues" last year that kept me from having the surgery, it maybe that it would have been in a bit "better state" or NOT, but possibly it might have been less problems than we thought.

My surgeon was very honest with me, and he told me that the possibility of once he got into the spine and vertebra during surgery, things may be a great deal worse than what we had seen on the films. Sure enough, both myself and he were correct. Once he opened me up, there was a previous fusion that never got completely "set and hardened" plus the other new C5C-6 I think, had NO disc for the most part, plus is was so jagged, and there was NO disc space, thus he had to literally stretch my neck 2 inches in order to make things right. Plus there were bone spurs, one huge new one and several others had developed. Well, NOT ANYTHING in there was going to magically heal itself, and as time went on, I would just be in worse condition, thus I would be an idiot to put off surgery...


I am in the process of trying to get my medical records, but their patient portal I don't believe is all finished yet.


Thus the osteoporosis, RA, osteoarthritis, RA, Predisone, as well as some other medications, my past few years of smoking although never very much and not all that long it is proven that it can cause the fusion not to harden and do what it is meant to.


So, after 9 LONG weeks in the hard collar, I have another 4 WEEKS to do the same, other than i can wear the soft one at night sleeping.


What I truly don't understand, is WHY DOCTORS DO NOT GIVE OUT ENOUGH INFORMATION TO PATIENTS BEFORE AND AFTER A SURGERY OF THIS MAGNITUDE????

IF I was NOT educated and versed in searching the internet like some people especially elderly.... I would not have one clue what I CAN do and what I CANNOT DO!!!! I've done search after search making sure I am not causing more harm, yet wanting to be able to do some things. But, he nor most surgeons, DO THE SURGERY... they don't have the bedside manner of a PCP, or listen like other doctors do, and they can be rude, down right pissy, walk out of the room when you are trying to speak, and so on....

Even I am not sure, other than he basically said I could not turn my head, nor nod up and down thus that covers about everything any person does, other than walk straight and sit up straight..


I shall continue later, probably tomorrow.....

Nightly News and the STORY OF THE FDA DOING SOMETHING TOTALLY INSANE - TAKING A DRUG (PAIN MED) OFF THE SHELVES FOR AN INSANE REASON!

 I was SO MAD and SO UPSET over this story I just watched on "Nightly News" that I HAD to come and post the video along with MY OPINION!!!! THIS IS NOT THE PHARMACEUTICAL COMPANY'S (ENDO) FAULT!!!! IF WE ALLOW the FDA to start doing this then WHEN WILL THEY TAKE TYLENOL AND BABY ASPIRIN OFF THE SHELVES???? Or TELL DOCTORS AND PHARMACISTS what they CAN or CANNOT prescribe for patients!!???? Just because a "group" OF STUPID PEOPLE TAKE A MEDICATION OPANA ER (by the way before I had my ain pump put in I was on this medication and it was the 1st one that contained a chemical that if you altered it by smashing it, cutting it, melting it and so forth IT DOES NOT HAVE THE EFFECT!!! Once a "drug" of ANY KIND comes off the Pharma's shelves, THEY CANNOT CONTROL WHAT A PATIENT DOES OR DOES NOT DO WITH IT!!! Nor can anyone but that patient!!!!! IF THEY can't get "Opana" then they will get SOMETHING ELSE.... NOTHING the FDA does will KEEP THOSE WHO ABUSE IT BADLY ENOUGH TO KEEP FROM FINDING SOMETHING!!! mMANY PEOPLE Use their ANTIDEPRESSANTS to try and commit suicide! IS THE FDA going to REMOVE ANTIDEPRESSANTS FROM THE MARKETS????? This is totally insane!!! IF WE stand for this AS PATIENTS, AS CARETAKERS, AS ADVOCATES FOR CHRONIC PAIN PATIENTS, AS ANYONE WHO DOES NOT WANT THE FDA TO RULE OVER WHAT WE CAN DO.... or NOT DO... They need to send an email, send FACEBOOK POSTS, SEND TWITTERS, ANYTHING TO SAY "HELL NO" I will NOT stand around with my hands down and head in the sand and allow this mess!!!! GGGGGRRRRR! This one really gets me extremely upset.... as a legitimate chronic pain patient that could NOT live without my Pain Control.... I would have already passed away from pain!!!!!! I CHALLENGE EACH ONE THAT DOES not agree to DO SOMETHING!!!!!







http://www.nbcnews.com/nightly-news/video/fda-to-drug-maker-please-pull-this-potent-drug-off-the-market-964253763552

Delving Into "hopefully" a New Outlook on Rheumatic Illnesses & finding Ways to get the word out to Others... Possibly a New BOOK, A new "Non-Profit" to be active with, and a "new attitude" for myself "Relationships" Chronic Illnesses, and Life

I've been basically "drowning" in my own sea of dispare over the past several months. TODAY being the 1 year anniversary of my Mom passing away, of course makes things even a bit more "difficult" to hold my head up and move forward.

I have a close relative that talks often about "being lonely" and is alone. In other words right now there is no "one significant" other, and I totally relate. My situation is much the same. The only "significant" other for me, is Peanut, my "Holi-Terrier"... as I call him! :)

So, I get the times that you wished there was someone there to talk to, to go to the market with, to go out and grab a bite to eat with, someone to be with you when you go through tough surgeries, or doctor's appointments... and just basically someone to "share" life's up's and down's come what may.

After my last "breakup" I told myself, I would NEVER "commit" again. I feel as if there are basically "3 strikes" against me as far as very long-term relationships, and for me, that means I am just not cut out for the "relationship" thing anymore. Possibly I was NEVER cut out for it, but I was damned and hell, that I would NOT give up! Thus my 3rd one, I thought was for "infinity". Well, NOTHING here on this Earth is for Infinity! One way or the other ALL whatever it be shall come to an end.

I've given much thought to either venturing out on my own, to a club, and I tried the church situation for awhile, and I need to get back to going. After I had all of the problems with Mom, then me and my own surgeries and so forth, I just had to stop going for awhile, until I was well. Furthermore, I really feel badly stating this, but although I was a "new member".... not ONE PERSON ever even bothered to check on me, or see why I suddenly stopped coming. This is after I had "joined" the church. Frankly, since I was actually ill, and had surgery etc. it really hurt my feelings that not one soul bothered to check on me. Besides, I (and maybe it was just my own stuff) but felt like my "tidings" were not "enough" weekly. Yet, I was giving what I felt the Lord asked me to, and also being with only my income which is very low, it was as much as I could give at that time.

Anyway, not to get too deep into religion, but it left a bad taste in my mouth. Yet, I will go back, it maybe that I go to another church, and not back to that one.


I have long been a follower of "Creaky Joints" a Non-Profit started by Seth Ginsberg who himself developed a Rheumatic Illness in his 20's. Like many of us, he found there was just not enough information out there for patients and caretakers. Actually in many ways there was not a great deal of information back just a few years ago for the medical profession. I was shocked to find out how many nurses, and even Physicians knew little about some of the autoimmune illnesses, and many tied into RA, Lupus... things like Sjogren's, Raynaud's, and MANY other AI illnesses that are "joint related" yet also effect other parts of the body.

At times I felt as if I was "educating" my own doctor. So, Seth opened his mind, his heart, and his talents to begin "Creaky Joints", which recently began a new program and app actually called "Arthritis Power". I just recently got it to download on my phone, and I have it open on my computer.

As I begin the "journey" through it, I hope not only does it help me, but it gives me the
"heart" to once again write on my book, and get myself advocacy back on tract. After the ordeal with my Mom in 2016, and then her passing away only 6 months after showing signs of "Lewy Body Dementia", it was quite a shock for me, and my family, friends of the family and other family members.

So, rather than ponder this "lonely" phase in my life, after talking with a wonderful woman on the phone earlier this week, that is a part of "Arthritis Power" I was inspired to try and give myself a break, and find that "voice" that can take me wherever I want to go, whether writing, blogging, being more involved in the advocacy, activism, and Ambassadorship roles that I so love being a part of.

So, here below are a couple of links. You can go to these and find out more information about "Arthritis Power" and "Creaky Joints".....

https://creakyjoints.org/

https://arthritispower.creakyjoints.org/

http://www.pcori.org/

Patient-Centered Outcomes Research Institute

https://www.uabmedicine.org/

University of Alabama At Birmingham

"PCORI" and "UAB" both sponsors of "Arthritis Power"

What in the World is going on in our World???? And How Do We Feel Now About putting our "Medical Life stories" out there to help others?

I've kept quiet for the most part when it comes to politics, all of the terrorists horrid and unspeakable acts, and all that goes along those things, from emails being "hacked" to the nightmare of situations in Britain, we "swear" we are not going to "cow" down to these happenings and allow them to change our lives,

Yet that HAVE! They have changed the way we live forever. More people purchasing things to protect themselves, whether it be a gun, tazer, baseball bat, or a large heavy flashlight. I am not trying to be "funny" but there are those that are not as thrilled about some types of things for protection, so like myself, I do have a baseball bat, Mace, a small Tazer, and I do have a very HEAVY flashlight.

What really has come to my attention through all of the "political" dilemma and all of the horrid things happening in our county, from Florida to California, to right new me in the Dallas TX area, is that people are now so "cautious" and concerned for their "Well Being" from those who may want to harm us, that things like our own "health matters" seem to be put on the back burner.

I have noticed that all too often there is SO MUCH taking up the internet, the television, everywhere we turn, that anything to do with health, from heart attacks, to RA, Lupus, and other Autoimmunity or Arthritic Illnesses seem to not be mentioned as much.

In fact, I feel that many of us feel "off" trying to discuss our medications, especially pain medications. Here I have been a blogger for many years, and have a Facebook, Twitter, Pinterest, and other forms of online things where I can reach out to others, yet I am almost in "fear" of talking about pain medications. They have gotten such a horribly bad "rap" that some of our very own "key words" we may use in a post on any of these, you worry if they could be misunderstood, or taken in the wrong context. 

I've often said that I try to stay away from talking or writing about "politics" and anything to do with "religious beliefs"... those things are very, very personal for many, and while some can tell their stories about their religious beliefs, there are some that feel it is a private matter. They may not want to talk about it with someone "online".... and if you do, then you kind of wonder if you could be "targeted" again for making a statement that could be taken wrong.... by anyone.

We also feel that used to like myself, I could put my story and "myself" out there online, not worrying about "hacking", or someone getting mad, or you even be "targeted" or watched and now even with medical things, at times I find myself almost "neutering" my own feelings and my own illness issues.

My issues lately have been since I've had the cervical neck surgery that was so much more in depth than we thought, I've not been able to really sit and type much. Thus I've kind of had to be a bit less here online... but then you hear and see things on the television, news, online, and you have to at times wonder if you really want to "give out" as much about yourself, as you may have 10 years ago....

Something to definitely ponder. .... YOUR THOUGHTS.. would be welcome....

Polka Festival Pics, Kids visit was awesome, and sad to see them go, have to begin this "bone stim" tomorrow, holidays, and family... lingering fear over neck surgery & pain in my thigh from the hip fracture

Here finally is some of my pics from the parade for the Polka Festival on Saturday. The kids started home this morning a couple of hours ago. It gets more difficult to see them go every time. It seems like they get here and it's time for them to turn around and leave. I enjoyed having them, and was happy I got to celebrate Logan's birthday, although a bit early, it was the first time in a very long time that I was where I could be with one of them for their birthday's. I think Heather's would have been the last and that was when she was very little... but I got to be with them yesterday for awhile, and Saturday at the parade. I didn't get to go to the Zoo due to my neck still being in the hard brace, it was so hot and humid, in fact the whole time they were here it was hot and humid, but they enjoyed the zoo... and sometimes we will have to go back when they come up. I just hope we get to see each other much sooner...

since Mom is gone, it is much harder for me to be here .... of course Jason is here and we see each other a couple of times a week for the most part, but I truly miss not being able to watch the kids growing up. And I so wished I could be with Amanda more. We talk almost daily, but being with her is always so much better. We did get a bit of time together, but it seems we are always rushed, because there are so many people to see, and things to do while they are here... As they drove away, I felt the tears in my eyes, and I got choked up, life sometimes is not easy. After all the hell with my neck surgery, and it still does not seem "right" ... plus my thigh where the hip fracture was is really giving me hell, and I know I probably face more surgery soon on my lower back...

I just wished it would all go away so I could have my life back.... but we all have a path to follow, and sometimes it is just not easy... but we must do, what we have to... then Peanut bless his heart has not been feeling well, I noticed him scratching, and sure enough, even with keeping the lawn treated, and keeping him with drops monthly, he had a flea on him, so I've been trying to use "natural things" to get rid of them...

so between trying to mop with lemongrass oil, apple cider vinegar, and I put a little bit on him with some coconut oil, that seemed to also help the itching, he is a bit better this morning, and I am already exhausted from trying to be careful not to hurt my neck, yet vacuum with my small vacuum cleaner, and mop the hardwood floors... and wash everything in dry it as hot as I can.... a pain in the butt, yet with all of the rain, and now more headed our way, it will be a pain all summer probably. I've got to start the "bone stimulator"... but I think I will begin tomorrow. I want to get over everything else, get my clothes washed and get a bit settled before I began having to wear it a total of 4 hours a day, 2 at a time I can split it if I want... and I pray next week, a week from this Wednesday, the hard brace can come off, and I can drive then, and wear a soft brace.... Wishing everyone a wonderful Holiday!

And Kids at the Zoo!!!!!  

Deep Bone Stimulator, Cervical Surgery and Life...

I am asking this because I knew when my Orthopedic Surgeon sent in the request for my neck surgery to my insurance, he had added something about a "deep bone stimulator"... I knew they used them, especially on osteoporosis patients, that have issues with bones not wanting to heal as properly or quickly as some others without the issue. Plus even with osteoarthritis, and like RA using Prednisone, and some of the other medications they use for RA, they can have an effect on bone healing, especially in the thigh and spine. BUT, he said NOTHING to me before the surgery or after. Even when I went in for my 1st recheck after the surgery, not one word was said, although he expressed concern about the bone back in my cervical spine not being much left there to do something with surgically if this didn't work.

Which left myself and my son and daughter concerned. Thus I am in this damned hard collar for these 5 weeks, which last time i only wore about 2 weeks, then wore a soft one, but I also was able to not wear one and could drive especially here locally. Anyway, I got a call from a Rep about a "deep bone stimulator" but it came in on my cell phone, I guess last Thursday or Friday and I never got the voicemail. I've noticed that happening some, not all the time, but at times either the phone does not ring long enough, or I don't find out about a voicemail or even text message for a day or at least a few hours. So this guy I guess works for a company in Plano TX, and was going to be down here last Friday in the area close by, in Waxahachie, and was supposed to try and get down to me, because MY DOCTOR had ordered it and my insurance had approved it... well I knew that it had been approved for a YEAR! I got notice from my insurance company twice in fact 3 times about the surgery and this stimulator being approved by my insurance. Anyway, so I didn't even get the message until yesterday, and called him back and left a message. What did get me, I guess the main company maybe located out of state or something, but the phone number he called from and gave me was way out of state, like on the

 East Coast, but he did say he was located in Plano.... so those kinds of phone calls get confusing. I've had several calls on my cell lately, that are "bogus" or either someone who had the number before gets a call and that has happened a couple of times, but what I thought is they HAVE TO HAVE CALLER ID. I know on my home phone if they don't have caller ID, I have them blocked... anyone legitimate will have a caller ID name... now I know they can get around that now and do by putting something in their that is not their real names, but it burns me up, for one and I am going to let my cell phone company know I am NOT getting my voicemails promptly, and that numbers are coming up "odd" and with no caller ID on them... so when I number comes in from some state that is strange and I do not know anyone from there, I don't answer it or it is usually someone trying to cause problems so I block that number. Fortunately, the guy left a message, so I knew to keep that number, but he had his name on it also. What also gets me though here it is 6 WEEKS, almost 7 since my SURGERY, AND THEY ARE JUST NOW GETTING THIS BONE STIMULATOR ON ME???? I read that should have been done on my 1st FOLLOW UP VISIT, NOT 8 OR 9 WEEKS AFTER SURGERY!!!

 I was so pissed about it, because I hate this damned collar, I am worried as hell and want to do things around the house, but everything I do I feel like I am not sure whether I should or not... even typing on the computer, I am concerned over... I know this doctor is going to get a piece of my mind when I go back in... this is ridiculous to not have something that important with me to use, supposedly 2 hours a day! I am so fed up with the entire thing. I am mad that I have to have this one for the holidays and my daughter and her family are coming, and it is my youngest Grandson's birthday... this will be the FIRST BIRTHDAY I get to celebrate with him since we live so far away from one another... I am so excited about it and we are taking him to the Fort Worth Zoo and in fact I have never been to it, I have the Dallas one, but not the one in Ft. Worth! I hope the weather is decent... I know right now it is not looking all that great for the holiday weekend.... and the Seniors are graduating this Friday also, so I hope they can have it in the football stadium... and they will if the weather holds out.... anyway, life sometimes just irks the heck out of all of us I know...

Coconut Flour, Whole Wheat Flour, Gluten Free and other "heathier" choices in Desserts

After going through the hip fractures and then the Cervical Neck Surgery plus knowing shortly I will also be probably having Lumbar Surgery, I'm truing to move to Healthier Recipes, Using more Whole Wheat Flour & Coconut Flour. I already use Almod Milk, and do all types of different things, such as using Turkey for my Ground Meat, staying away from red meats, trying  to eat more fish if possible, NEVER using Lard, Shortening, but only Canola Oil, and more lower types or fat free items. Of course, you have to really watch the labels, and me smart about  what the ingredients are now days. Just because something says "Organic" or Lower Fat and Carbs, you will find out some of that is not exactly true. I've tried and also had luck, and had failures especially with Coconut Flour, that only take a small amount BUT LOTS of eggs (I use substitute, or other items to add moisture to it. 

Here are a few I've picked out to try and thought I would share them with you

Basic Cake Recipe Above with Whole Wheat Flour

Applesauce Cake Above with Whole Wheat Flour

Cookie Bars