AS I post this, and see how many concerned people come to my blog over the Healthcare Crisis I spoke about... I continue with things I usually don't discuss - Our Political "Future" and the Effects on All, Especially the Chronically Ill

As I watched the Night New last night, and once again, the "fight" over Health Care, continues to cause many, many of us terrible stress. Either we are ill, or have children or other family members ill, or cannot afford the outrageous and constantly rising costs of healthcare and health insurance.

Believe me, after the hip fractures last December, then the cervical neck surgery this past April and the RIDICULOUS CHARGES FROM MY DOCTORS, FOR A CERVICAL BONE STIM DEVICE, TO the the rest of the charges from an ambulance, to the radiologists, the anesthesialogists, to medications, and more, it is like that governments just soon us to "die" rather than "burden" the nation with our chronic health problems.

But, look at "John McCain"... you can bet the government is making sure he has the very, very best care, and all of what he needs to hopefully survive the tumor they found. Which of course I hope so also. I "no matter what "party" I lean towards" would not want anyone in our governments bodies to be ill and pass away.

But, those Congress men and women, and all of our governmental people get the best care the rest of their lives. Even after they are no longer involved and "retire" they still are well taken care of, with pensions, healthcare and benefits.

Which I am not putting down, BUT WHAT ABOUT ALL OF US THAT ARE HERE SUPPORTING THEM? Their own constituents that are the ones that "vote" them in? I am sorry but our President is just not the right person for the job. Not when it comes to many things, he just does not know or understand how to handle. And this constant "tweeting" of major information I feel is somewhat ridiculous. Not ALL that goes on, due to many reasons, needs to be "tweeted" over the world!!!!!

Here is my post from Facebook, as to what I went through last week with doctors and now more health issues that I am fighting with...

I'm totally exhausted! Yesterday having 2 doctors appts in Dallas, that were scheduled one for early morning and the other mid afternoon in two totally different locations, about got to me this morning. But, my son and I did have a great time together. I was glad he went. We got to talk about lots of things, as well as he got to see my Rheumatologist and my Pain Dr. whom he had not met either. I wanted him to witness himself what fantastic doctors I have, and he immediately saw that my Rheumatologist was truly a "God-send" as well as my Pain Doctor also.

But, now my Rheumatologist wants me to see another "specialist" which I did not even know existed, which is a Metabolic Mineral and Bone Specialist, mainly due to the Osteoporosis, in which he was extremely concerned due to those that have "fractures of the hip" especially due to osteoporosis, have a 20% HIGHER mortality rate than those without one and without osteoporosis, plus just having the RA and Lupus, already leads me into a higher possibility of not "living as long" as others without it. This doctor also may have other options to "treat" the osteoporosis, and may provide answers about why I'm having the "chilled totally drenching night sweats, since this could be related to an "insulin" problem with my metabolic systems, which can be a "parathyroid" which is NOT related to regular "Thyroid conditions" and other issues that may lead us to find out more about chronic health illnesses, that maybe what I could be having and don't know it. So, I have to have another bone density scan next week on Tuesday, then schedule an appt with the specialist at at SW Med Center in Dallas.

I have to have the scan and results to take with me, so I am waiting before I schedule the appt. Hopefully it will be soon, so we can find out what could be going on, which as he also said, I am a very "complicated" patient, which ALL of my doctors say, so we shall see. Then I had my pain ump refilled, and I guess i should have "insisted" he up my meds. I am in so much pain again today, I am about in tears.

 Also he thinks my finger problems, are eczema, so he called in some oinment for those increased my Sulfasalazine, by 500 mg more twice daily, and if we don't see results in 2 months then we probably will move on to Acterma for the RA... the Enbrel may not be dong it's job, if by 2 more months I am not much better. So, again a med change... probably.... anyway, lots going on, and I hurt like hell... but I've got to get out briefly for a couple of things, then I hope to have myself on the sofa. We have yet another horribly hot day with "heat warnings, again... for about the 5th day.... I will probably not post much more today, just wanted to let you know a bit about my appts yesterday...

From the Arthritis Foundation to the AMA, to ALL of THOSE concerned with the "fate" of our Health Insurance PLEASE sign a petition, call Congress People, email, LET YOUR VOICE BE HEARD!

I know MANY OF US, ARE SITTING ON PINS AND NEEDLES DUE TO THIS "OBAMA" REPEAL, REWRITE on OUR HEALTHCARE SITUATION!

All of us with our own CHRONIC PAIN AND HEALTH PROBLEMS, to those with CHILDREN with Chronic Health issues, we ALL need to take a stance and LET OUR CONGRESS PEOPLE KNOW HOW WE FEEL!!!



Taking "Medicaid" benefits or lowering them to where doctors will not even see a person, or just plain getting rid of many doctors that will refuse to take some of these health insurances due to NOT GETTING PAID, OR NOT ENOUGH, is ridiculous!!!


WE, THE PEOPLE, OF THE UNITED STATES OF AMERICA, ARE SUPPOSED TO BE IN THE GREATEST NATION ON THE GLOBE, YET MANY OTHER COUNTRIES TAKE CARE OF THE HEALTH AND WELL BEING OF THEIR CITIZENS AND WE CAN'T??????
WHY!? Because MONEY is not being "handled" properly. GREED, FROM EVERY place in our governmental bodies, and THOSE THAT DO NOT UNDERSTAND, how horrible it is to BE ILL, AND NOT BE ABLE TO SEE A DOCTOR, OR AFFORD IT, OR MEDICATIONS!

Those in "Congress" and most other government jobs, GET PREMIUM HEALTH COVERAGE, THE REST OF THEIR LIVES, so they don't have to "worry" over the costs and expenses of GOING BROKE! If you can't afford your children's vaccinations, or their medications, or your own medications!

I have been "watching" the "costs" of my medications, even though my insurance "pays well" what gets me is EVEN GENERIC PRESCRIPTIONS ARE SOMETIMES 3, 4, 500.00!!! A MONTH, so tell me and we wonder why our health insurance premiums are too high, or if you have to buy medications without insurance, YOU CANNOT AFFORD SCRIPTS THAT ARE THOUSANDS OF DOLLARS A MONTH! It is totally insane....


It just chills me to the bone, and makes my blood 'boil" at the same time to witness only ONE of my meds in "Generic" and the "total cost" of it at 500.00 a month!

I CALL THAT GREED!!!!

So, look up your DISCTRICT CONGRESSIONAL LEADERS, AND SEND THEM EMAILS, OR MANY OF US ALREADY GET PETITIONS, OR LETTERS TO SIGN FROM VARIOUS PLACES, LIKE THE ARTHRITIS FOUNDATION, OR THE AMA SENDS ME INFORMATION, and just about any and every non-profit or Foundation that has to do with the rising costs of medical insurance, the government taking away benefits, and leaving people "hung out to dry"....

Here are a few links:

This is at the Arthritis Foundation if you are already an Ambassador or an Advocate you just fill in a couple of blanks, or you can sign up, just for the letter to Congress...

https://af.ac360.aristotleactioncenter.com/?alertid=e89992b5-9589-47ad-bcbb-d1dedf905050&alertType=legislative#/alertId/e89992b5-9589-47ad-bcbb-d1dedf905050/

  
Mom's Rising.Org


Email Congresss, Tweet or Call the AMA's Link:

https://www.votervoice.net/PAN/3/Campaigns/50663/Respond


These are just a few!!!!! Just about any foundation dealing with medical/health problems, and patients, and insurance, along with involved in getting the government on board where they need to be, you will find a place you can sign something on....

The 50-State Network Health Advocacy, Creaky Joints, The Global Healthy Living Foundation and "Patient Counsil" that are at the heart of these Arthritic Illnesses & "Chronic Pain" Foundations

I've been a "member" and follower of "Creaky Joints", and "Arthritis Power" plus following Seth Ginsberg for a very long time. He began his venture of these websites, due to his own struggle with pain and arthritic illness that began very early in his life.

I've always admired his tenacity, and the way he gives each of us, the patients a "VOICE' about our own Pain problems and Arthritis health problems, and there are many. I can definitely attest to the MANY types of Chronic Pain, that myself and MANY of us have to try and deal with daily. Which includes trying to get to the proper doctors, get the medications we need, get insurance to pay for the help we need, all the while also fighting "Congress" on the Federal and State Levels, so we can continue to get the "Best Healthcare" for "Chronic Pain" possible. I believe that many people that have not experienced health conditions such as Rheumatoid Arthritis, Osteoarthritis, Juvenile RA, along with several other "arthritic" conditions, don't get the "horrid" pain all too often patients live with. Of course, pain, is not the only factor that effects every part of ones life. We often live with stiffness, joint swelling, mobility issues, medications that cause some "harmful" effects, such as corticosteroids. Like my PCP says to me, Prednisone is a "necessary evil" for me. Yet, I already was predestined to have osteoporosis, thus with my body frame being small, the medications, along with RA and Lupus, have me at the "severe" range of osteoporosis. This simply means, THAT is more than likely why my hip fractured after the fall I took in December last year. If I had not had osteoporosis, I may have came out with just a very bruised thigh and hip. Yet, it was fractured in two places. Also, those of us with this dreadful disease also run the risk of "not enough bone" to have surgery on. I have ran into that one with my neck. After this 2nd surgery, now I face "not enough vertebral bone" to even "repair" anymore. So, this 3 level surgery I had in April HAS TO WORK, as my Orthopedic Surgeon put it. If not, then I run the high chance of having a "totally fused" neck, where I could not look UP or down... or move my head very much side to side.

I had a very informative "phone conversation" with several of the people from the  50 State Network and the Patient Counsel all a spin off by Seth, as well as The Global Healthy Living Foundation this afternoon. I feel very privileged to be a part of these foundations. I hope to help further educate patients, doctors, find ways to get bills passed at the State and Federal Levels of government, along with other ways in which they help patients, there families, and close friends and help to pave the way for more guidelines on several extremely important topics that effect many of us, from "biosimilars", to "all ways" that patients are effected by health insurance or lack of, medications, finding doctors that can help, and ways to cope with the red tape involved when you are chronically ill,

Most that know me, know my own personal journey through the pitfalls, the times of doubt and sorrow, and the sometimes triumphs over these diseases. All too often patients like myself, have "several" pain problems, not just one. Which makes our life a living hell at times. We fight for treatments, medications, insurance that pays, along with every step we take. When you are chronically ill and/or in pain, it's difficult enough just to get out the bed each morning, much less take the stresses of finding proper care, proper medications, trying to get insurance to pay, and now fighting the government so we continue to be able to get the care we need on ALL LEVELS.

The 50-State Network Patient Network, along with Creaky Joints, and The Global Healthy Living Foundation are helping to get our governmental bodies "on board".  I am also now a member of the "Patient Counsil", and will update you more as I move forward in my own venture and learning about everything. They provide a great deal of information for patients, as well as those who are playing other "active roles" in these foundations Rather that taking away what we need to survive and try to thrive through all of the days of outrageous pain, we are out there fighting for not just ourselves but ALL CHRONIC PAIN PATIENTS, LOVED ONES, FAMILY, JOBS AND MORE!

I am hoping to become more active in a role with the 50-State Network, already involved in Creaky Joints, and to learn more about the Global Healthy Living Foundation. As the days go by and I learn more, I will definitely keep you posted, on how you can contribute. In the meantime, all of the links are below, so YOU can go to the sites an find out more also.

By the way when I was reading through the documentation from "Creaky Joints" one "phrase" really stuck out to me. Of course much of it is brilliant and so helpful to patients, caretakers, families and close friends. We've all heard the phrase "Do No Harm" which is of course the main "vow" of physicians. One of the things they pointed out though was that does not "just mean" physical harm, but mental and even "financial". I felt that really "struck" a nerve with me. With the very high cost of surgeries, and the ones I've had are always over the $100,000.00 dollar range... yet, unless you really "ask" for help, either for a payment plan, or "financial aid" of some type, often you are NOT offered it. I've found out there is NO SHAME in calling a health care provider, especially with a huge "bill" from surgery etc. and asking for some type of help. Often if you "pay it all" at once, they will give you a percentage off the bill, or like myself, on this "Bone Stimulator" that I was not told runs $5,000.00 AND ONLY LASTS ABOUT 6 MONTHS, and is NOT reusable for future surgeries. So, my part was going to be over $600.00, and that is just a "drop" in the bucket of bills, from hospitals, doctors, the Ambulance, ER, Anesthesiologists, Radiology, and so forth. I called and found out that I "qualified" for complete "assistance" for the entire 600.00. Yet, if I had not "asked" they never would have "offered" for sure. Just on portion of what we deal with on so many levels, with any chronic illness. 

Also, those of you who deal with the stresses of "Arthritic" illnesses may want to check out the app "Arthritis Power". The details are at the URL listed below... and you can also get it at the "App" Store at Apple.com or on Google Play.


Please visit the sites, and see just how incredible these places are along with seeing how YOU the PATIENT can be on board also, to fight the "good fight" for all!

https://creakyjoints.org/

https://www.ghlf.org/

https://www.50statenetwork.org/

 

https://arthritispower.org

 

New Clinical Trial on Cure Click for Radiation for Cancer

Contribute to #Cancer Research from home!

National Cancer Institute supports this study for #testicular, #ovarian, and #cervical cancer #ad. See if you qualify. http://curec.lk/2vCjOxQ

Research to Better Understand the Impact of Radiation Therapy
The researchers behind the RADIANT study would like to make radiotherapy safer and more effective by developing a blood test that helps doctors predict a patient’s response to radiation treatment based on a patient’s genetics. By identifying patients ahead of time who will or will not benefit from radiotherapy, doctors can use the best treatment possible in fighting the cancer. The National Cancer Institute awarded DxTerity, the study sponsor, a grant to validate this blood test in a larger population of cancer patients.

 

Visit with follow up on my Cervical Neck surgery, and facing Lumbar Sacral Surgery in the near future...

I saw my Neck surgeon yesterday, and I told him that I thought I had "bursitis" in my hips, they both hurt so badly, no matter If I walk, don't walk etc... but he says it is my lumbar/sacral spine, as it has been, just getting worse. 

So, I may try to have my pain meds "upped" just a bit, until at least another 6 weeks. He said my neck is "okay" as far as he sees for now. He said of course he can't tell how "fused" the fusions are, but so far, he told me "I am doing everything right" and to keep doing what I am - 

he told me I could drive with either of the neck braces, and that when I am out in public that I really need to wear one or the other, and to continue to use the bone stimulator, and "hopefully" my neck will fuse, then we MUST take action on my lower back. I've had problems for years, and it is really progressing... the pain is horrible and effects my hips more than anything... they have hurt so badly for the past 4 weeks almost that I just want to scream.... plus I am having other issues that are caused from the lumbar spine issues.... 

So, I know I face that.... but I heard a "little bit" of "hope" yesterday about my neck, yet he is still extra cautious wanting to give it all the time we can to heal properly.

How does one find "hope" when your life feels like the meaning is gone... Chronic Illness, and Chronic Pain how it takes its "toll" on your mind, body, life and soul.

Lots on my mind... I miss "life", I miss what I loved so much, that I feel was lost in "translation" somewhere along the way. I've not had much to say, because I cannot stop the tears from falling. I've been trying to pull myself out of this "funk" but honestly, I cannot find motivation to do much of anything.

Living from surgery to surgery, not knowing from one day to the next what will happen as far as my stupid Lupus, RA and such, not having the love in my life that I had, I feel so adrift, so lost... There is so much to say, but I am so choked up that I cannot even find enough words to type, write, and I feel "useless"... I always had something to look forward to each morning, I always had "plans" dreams, had faith, and all of that has just faded into memories... 

I told a friend this morning that now I know why as much as I love music, I find myself almost unable to listen to it... used to I had the radio on, everywhere, all the time, or the I-pod on walking, and now it's too hurtful to listen to what hurts so deeply in my soul... too many of the very songs I loved, bring back too many memories, and I've lost just about everything that I've ever loved, and held so precious. I used to be able to find a way to pull others out of this kind of horrid emotion, yet I cannot find a way to pull myself out of it... I feel so "forgotten".... and I think that is because I made the mistakes, that made others "forget".... I blame me, for much of that....

All that I "lived for", hoped for, had faith in, over the years the constant concern, over my own health, and my loved ones health... then the surgeries, many, and the severity of pain, sometimes even with medications, it seems it is relentless... and then to think that you may "lose" how far your life has come, fighting to find relief, find great physicians, that understand, and try to help make you more comfortable so you can find greatness in life and love again, could be thrown out by the governmental bodies, that have not one clue what we endure on a daily basis.

If someone would have told me in 2004, that I would lose the love of my life, that I would have to endure so much chronic illness and pain, that I would find myself so lost, and feel as if anything that I was ever "worth" or worthy of, no longer am I worthy or worth anything.... not worthy of being loved, not "worth" the paper either of my published books are on, and that all I hoped to do in the future, to help others, I find I am drowning in so much heartache, that I feel nothing, but pain, loss, and see no way I could help anyone, when I no longer can help myself.

I cannot sleep, I live with severe cold night sweats, and night terrors, ever since my husband left me, just walked out after 13 years, and then my Mom passing away in 2016... I've lost all will to "walk on"... to "look forward"... I stand stagnant, I cannot find the words to express the severity of gloom that deems to cover my heart, my soul with a darkness, that I am not sure I will ever get out of... not a "hole" but just an ever surrounding era of darkness, and each day, I used to think it would get better, things would change, I would find the "light" again. Yet, light only makes it hurt worse.

When i look in the mirror, at myself now... I don't see the "young at heart" 50 plus year old I was... I see the older, lonely broken-hearted woman, that who would want to have any longer? The Sjogren's took all of my teeth nearly 4 years ago... that was one of the things in my life, I never wanted to have to go through... it is a "loss" that makes your reflection in the mirror so different... you feel "older", your feel any "beauty" you had has been suddenly taken away... I used to be overly obsessive because my teeth were pretty crooked, but then when you lose ALL of them... and have to try and endure total dentures, at a young age, they never are "like" anyone says that they are... they are just a total pain, in the mouth, in having to deal with them, in you not wanting anyone to see you without them...


I'm also dealing with a different "medical issue" that I have brought up to my doctors several times, but I've still not really gotten an answer, or what to do about it...


I've been having heck with "nighttime cold clammy sweats"...NOT a "hot flash" but I wake up shivering, my clothes, pillow, and bed sheets completely soaked in sweat. I've also had night mares horribly and have an issue about waking up around 3 to 4 am each morning, and not able to go back to sleep. I had quit drinking coffee because of my GERD, and didn't drink any for about 2 years or more. 

But, recently, even with the heat, I've almost "craved" coffee but only early in the morning. I have mentioned these cold shivering mainly happening night sweats to my doctor several times and really expressing that it concerns me. I don't think it is "hormonal related" because as I said above, it's not like a "hot flash" and 99% of the time they come on in the middle of the night almost at the same time. In fact, the past two nights it's been really bad. I had to get up, get my thick robe last night, and as "warm" as it is, I had to put that robe on and sleep in it, because I was shivering I am so cold. About 2 weeks ago, I had one before I went to bed. I felt it coming on, and it usually starts on the back of my neck or my head becomes suddenly soaked, then the rest of my body follows... so I've done some research and it sounds like "hypoglycemia" but a specific one that usually only happens at night, like this causing a cold clammy sweat that soaks your clothes, sheets blankets and all. Plus the waking up at 3AM is another sign of it, and the night terrors I have can be a symptom. I am a huge fresh fruit eater.

 I try and stay away from high calorie foods, I eat whole grains, and try to stay away from white flour products, but I do love sweets. Yet, I bake my own often using whole wheat flour, canola or coconut oil, Splenda, I've not used very much "sugar" for many years. I've done a great deal of research on different types of flour, and as I said most everything I bake I use whole wheat flour, recently I've tried adding some Coconut flour to a few things, but it is really hard to "adjust" to. You don't have to use very much at all, like a 1/4 of a cup, can take the place of over a cup or more of white flour, or even wheat flour. It gets "thick" very quickly, and I use "egg beaters" mainly. I am not a huge beef or pork eater, but mainly chicken, turkey, fish, beans, peanut butter and even though I love cereal of just about any kind, I usually stick to something like plain cheerios, or some such as that, then add just a tiny bit of some other one that is a bit sweet.... 

What I didn't realize is that "hypoglycemia" can be a precursor to diabetes. With my RA and Lupus, I do have a higher chance of having diabetes, thus I watch the sugar intake, etc... try and walk, exercise daily, of course lately with the neck surgery, it's been rather difficult to do other exercise other than walking, plus I've had so many problems with at first my right hip and thigh the one that was fractured causing pain, and sometimes walking makes it worse, but now both of my hips hurt, and I have to wonder if I have bursitis in both of them. 

I've had it before and had both injected, once or twice at the same time. Since I did not have a "complete hip replacement" after the fractures, but a "gamma nail" and screws i found out I could still have "bursitis" in that hip. I've also noticed especially since the hotter weather arrived, I have a very hard time with my "body temperature" inside. I'm either too "cold" with the A/C on, OR I turn it where it comes on less, then I am too warm... like my body just cannot adjust its temperature.... Has anyone experienced this type of problem with the cold clammy sweats, I mean soaked clothes, sheets, blankets and all... and get up and often my clothes are still damp, even if I got up and changed during the night.... and if so, did you get a diagnosis, or what have you done to try and help it?