Showing posts with label FM. Show all posts
Showing posts with label FM. Show all posts

Wednesday, November 14, 2018

"Thyroid Awareness Month" and Hashimoto's Thyroiditis - Do you know the signs, symptoms, and more...

Thyroid Awareness Month - Did you know that certain types of "Thyroid Problems and Diseases" are actually "Autoimmune Illnesses? And that having "other" Autoimmune Illnesses can put you at further risk of Autoimmune Thyroid Diseases such as Hashimoto's Thyroiditis Disease?

Symptoms of Thyroid Disease (as well as others depending on whether you have a "hypo" or "hyper" type of Thyroid Issue...

Are you experiencing any of these symptoms?

  • Panic attacks
  • Insomnia
  • Anxiety or depression
  • Unexplained weight changes
  • Diarrhea or constipation
  • Inability to tolerate heat or cold
  • Muscle/joint aches and pains
  • Unusual weakness and fatigue
  • Hair loss
  • Swelling of the feet, hands and face
  • A hoarse voice, problems swallowing, or a tight feeling in the throat
  • Irregular periods
  • And more
See much more information at the links provided above...

Wednesday, August 9, 2017

SICK and TIRED of the "stigma" placed on so many of us with Chronic Pain and just how horribly it effects our lives, I feel it's time for me to step up and also state my feelings on the subject!

For a long time, I've kept my "mouth shut" when it comes to the business over those who want to make EVERYONE, with Chronic Pain and Chronic Illnesses, look like a bunch of junkies! But, I am just too fed up with it! It's gotten to the place that rather than focus on other countries who could destroy our nation with bombs, or talk about how to "help" those with pain problems, or use their talk to make available more research dollars, funding to help those who are ill, rather than make us all feel as if we are doing something wrong. 

As I use the example of someone with Diabetes, would you take away their insulin? A person with high blood pressure would you deny them medications to lower their blood pressure? I've been thru just about every type of other "pain reliever" you can imagine. chiropractors, injections into my spine and occipital nerves in my neck, injections into just about every joint on my body, I am on several medications for the Lupus and RA, yet some other medications that I had MANY SIDE EFFECTS FROM, that were supposed to help with chronic pain, I have every surgery that is a promise to help my pain, I walk daily, I don't stay sedentary, I try and do all I can to ease my pain. I've gone through NSAIDS that can cause me to have another heart attack. 

My 2nd MI partially was caused from chronic pain, and after the fractures to my hip, my pain level increased, due to many things such as the change of my gait, my neck in such bad shape, that he has to "stretch" it 2 INCHES, because I lost that much disc space... So, I KNOW ABOUT ALL F THE alternatives. Some of which work wonderfully for some people. I am thrilled that some find relief from things such as Gabapentin, which caused me to "hallucinate" even on a small dose. So, after going through SO MANY YEARS, of every type of other treatment available, what "works" for me, may not be what works for someone else. "Chronic Pain" in itself is extremely complicated. Due to having SO MANY CONDITIONS, that can cause this type of pain, it's taken an "army of physicians", medications, treatments, surgeries, injections, therapy, you name it, I've done it to find "what works" for me, with the least amount of side effects possible. 

So it just "burns my butt" to hear the crude and down right stupid remarks some say about us patients, that live with pain daily. I give a good example. I had NO CLUE, HOW PAINFUL, a fractured hip was, UNTIL IT HAPPENED TO ME! That was one of the most excruciating times in my life, as far as pain goes. OMG, kidney stones are horrible and unrelenting at times. But those two fractures of my right hip.... were almost unbearable. Every tiny movement caused me so much pain, I thought I would go into convulsions. Even being put on the stretcher and taken over my lawn to the ambulance, I was literally screaming, crying and probably cursing so badly and loudly, all of my neighbors heard me! I even waited over 2 HOURS, before calling the ambulance.

I wanted to "make sure" I had a fracture, and not just a "bruised hip" before calling the ambulance. Then them trying to do an X-ray or moving me in any way, I shook and screamed in so much pain. And those things are "acute pain" issues. So, you take some of those and put them with someone often daily or many times in a month's time, and see how well they would function in life for very long. I tend to be one of those people who try and not "show my pain" or illnesses in public. But, believe me just because I am not limping or using a cane, or whining and moaning in pain, does NOT mean that it's not there. So, some of you may get sick and tired of seeing me post about all of this ridiculous uproar over this so called "crisis", but I intend to keep on getting the word out as much as I can, and supporting EACH OF US, who would be "lifeless" if we had to withstand chronic pain and illnesses without any type of relief. 

The LONG LIST of illnesses that can cause relentless pain are endless. You can have "diabetic neuropathy", many different types of arthritic illnesses, autoimmune illnesses and syndromes, nerve pain from degeneration of the joints, of bones, of the spine, migraines of many types now, TMJ, FM, torn muscles and ligaments, surgeries sometimes can cause pain, "neuralgia" comes from so many types of illnesses, whether sciatic nerve pain, from a lower back issue, or pain in the arms, wrists, fingers, from a cervical neck problem, or from problems with diseases causing bone pain, cancers of many types, all types of "myalgia's", torn muscles, chronic sprains, cartilage gone in joints, certain types of chronic bladder problems, certain intestinal chronic health problems, and the list goes on and on about health conditions that can cause or contribute to chronic pain and chronic illnesses. 

I've decided that I am going to "fight" as much as I can online, with petitions, letters and such the ridiculous claims that "everyone" who takes a pain medication is "addicted" or an abuser. Whether it be governmental bodies, the DEA, the FDA, or the President, (HOW CAN any of those people who have NEVER HAD A SEVERE AND CHRONIC PAIN DISEASE POSSIBLY UNDERSTAND OR KNOW ALL OF WHAT WE GO THROUGH IN A SINGLE WEEK?" ALSO, I am SICK OF the health insurance companies "calling" constantly, wanting to "go over" your medications "over the phone" when NOW THEY DON'T EVEN SAY WHO THEY ARE ON CALLER ID! Now rather than saying the name of the company, Caller ID usually say "1-800" number calling... how do I KNOW THEY ARE WHOM THEY SAY THEY ARE? Why do I want to "discuss" something that honestly, is NONE OF THEIR BUSINESS! That is between MYSELF, MY PHYSICIANS, and if I NEED HELP, MY OWN PHARMACISTS? It is insane how many calls I get from so called health insurance, wanting to discuss, "this, that or the other" about my "health".... I HAVE A LIFE TOO, and I don't care to sit on the phone for an hour telling a person I don't know and have no earthly idea who they are about my medications or anything else for that matter!!!!! 

We are WARNED AND WARNED ABOUT NOT GIVING OUT PRIVATE information over the phone to those we don't know.... so this is a prime example of what irritates the hell out of me!

I got a call earlier in the week, from a "guy" who I didn't even "understand" asking for me? He never said where he was from, or whom he worked for, and then when he mentions my medications, I got irritated and told him I was NOT at that time discussing it with him. In the first place, THE MAJORITY OF THE TIME, THOSE PEOPLE EITHER CANNOT SPELL 

MY MEDICATIONS, OR THEY HAVE NO CLUE WHAT THEY ARE FOR! Why should I have to "explain" those things over the phone to anyone????

So, some of you may get sick and tired of my ranting on the subject, but enough is enough!

Sunday, November 20, 2016

Shout Out Tuesday! (I missed!) sharing the love to those Health Activists that Truly give me a "hand and foot up" when I need it the most! (TUESDAY 15th ,2016)

TUESDAY 15TH - WEGO BLOGGERS ANNUAL EVENT -  shout out Tuesday to some of my great people in the HA and friends world!

I must thank Laura Keivel with the Arthritis Foundation. She has helped me and continues to help me get through some of the very tough times these illnesses , and life can throw us in. From all of my own health issues, to Jim's accident while I was at the Summit with them in DC in 2014, Laura has been right there, helping me in any way she can as a mentor, a friend, and giving me advice to make me feel like I can still "charge through these things" and bring my activism and writing back on tract. Laura, you are just a true angel.

Barby Ingle and I got to know one another through chronic pain, and also with her writing, her testimony and advocacy skills, and also someone who can be so ill and in the hospital yet bounce back and be on the road again, never allowing the pain and chronic illness steal away her "show" through her goals, Barbe Ingle, you are an inspiration.

Kerri Fabert I met during my 1st Summit in 2014, She lives about a bit over an hour away from me, and has Sjogren's that now is effecting her sight even worse than ever. Yet, again, she is a loving wife, Mom, and works in the medical field, as well as does the Jingle Bell Run, and other events to help get the word out about autoimmune illnesses and yet how we can ALL can contribute in one way or the other, Kerri THANK YOU FOR ALL OF YOUR KIND WORDS and being a role model in so many ways, activism, being a fantastic Mom, Wife, and friend.

WEGO Health has SEVERAL INCREDIBLE PEOPLE, that always are there to answer my questions, and listen when I need an ear to "bend".  Susan Mees, Danielle Schroth, who is Community director and also works with Cure Ckick, helps to make Cure Click something that everyone can do to help spread the word about Clinical Trials. I am so proud to be a part of Cure Click!

Pam Gill, from the more "local" part of the Arthritis Foundation, I met at the 2014 Summit, is just a sweetheart. She is a huge advisor for our District in this Central portion of Texas, and keeps everyone up and going' excited about all of the activities, from the National, to the State and Local parts of the AF. Thanks Pam for being a great friend and even though we don't speak much, I always know I can email you for guidance and help.

KRISTEN AT WEGO is such an upbeat and sweet young woman! She is always giving up hope, encouragement, and reasons why she feels "we" are what makes "WEGO" work! - "the patients"!

Gosh, then there is Laurel, Jackie, and so many at WEGO Health, that I am so thrilled to be in touch with from time to time. Everyone At WEGO are just wonderful people, and I feel blessed to be a part of the patient team.

There are so many more of you that give me hope, lift me up, and give me the strength to move on, even when I feel I am not make enough of a contribution,

Clarissa Shepard who has a huge following on her Facebook group about FM, and the illnesses that go along with them. Clarissa is also a dear sweet lady and friend, who is there when you need her, and works herself day and night keeping up with all of the information about FM, and the other illnesses that go along with that fight, Much like other autoimmune illnesses, Fibromyalgia, is yet another one of those mystery illnesses that we still have a very long way to go before we understand the issues surrounding this horrid "disease". I appreciate you Clarissa and thank you for your hard work and friendship.

This is hard to do because I know I am missing many... but know ALL of you are in my heart, and I am so elated and feel honored to know each of you in all ways....

Thursday, March 3, 2016

PLEASE JOIN ME in My DAILY NEWSPAPER "All Things Autoimmune"! News you Can Use for all types of health issues... and more...


Autoimmune Arthritic Systemic Life Daily – Rhia

Please join my Daily Newspaper that can give you much insight into the latest information of Autoimmune, RA, Lupus, Sjogren's. Chronic Pain, FM and many more health issues, from the latest news, medications, and information YOU can use! I am currently working to really "update" and make it "customized" for YOU, my audience! Thank you, Rhia Steele "All things Autoimmune"

Wednesday, December 23, 2015

PLEASE REMEBER to Put Your Personal Stories and Comments in - THE CDC NEEDS TO know how we feel! This can have a dramatic effect on our lives in the future!

The link below will take you to the docket and to where you can comment. As of this morning there are 500 comments, and we need more like 5,000 or 50,000!!! I know there are MANY, MANY MORE out there that have not commented yet on this vital and important subject. PLEASE take a few minutes and go to put your comments in.

I know we are busy with the holidays, but this could truly effect the rest of our lives and holidays in the future!

I saw many "names" I recognized, and also you can be "anonymous" if you prefer. Whatever you do, get your comments in no later than January 13th, which is not far away.

By the way, the link works, not sure why this "sign" comes up as far as the link:!documentDetail;D=CDC-2015-0112-0001

Here is my comment and gosh I could have written 4 times this much!

Here is my "comment":

"First of all I want to Thank the CDC for allowing "us" as patients, along with physicians, caretakers, and those who see what chronic daily pain does to people's lives. Even in my 20's, and 30's, due to severe migraines, although trying to work, raise two children, go to college at night, and do everything in life that needed to be done, I found myself in the emergency room once, twice, even three times a month. I missed days of work, that led even after being employed for 6 years or more, to me either resigning due to the severity of pain, nausea, and all that went along with migraines, other than being fired. As time went on, in my mid 30's my joints literally began to fall apart. I had knee pain, neck pain,shoulder pain, elbows, hips, and went through surgeries trying to rid my body of pain, so I could have "a life". Back then women stood as being "stressed, having hormone problems, have anxiety" when we went in complaining of "pain". I went through every type of treatment, from injections into the back of my occipital nerves, to chiropracter's, to every type of a specialist, even being hospitalized with special treatments, yet nothing helped. My Internal Doctor would give me "some" pain medication at times, but never really enough to help me with the severe pain. By the time I was 35 multiple joints had been through surgery, I had a hysterectomy, and I knew even back then "they" the medical professionals were "missing" something. I ate properly, I exercised daily, I kept my weight down, I "appeared" healthy, but the pain continued. At 40 years old, I had my 1st heart attack. Out of the blue, no "symptoms", just on the 8th day of January 2001, I took myself to the ER, a drive of 20 plus miles to the ER, and I was having a heart attack. I was told that if I did not get away from the "abuse" at the time that I had been enduring, either the "ex" would kill me, one way or the other. So, I left my home & moved to Seattle WA. I spent 6 years there, "getting well". In 2003, I began to have severe pain everywhere. I was seeing a pain doctor, who was giving me a very tiny dose of pain medication, again but not anything that was enough to help me to try and "live" with a quality of life. I was so ill, I had no choice but to resign my job, and file for my complete disability. I could no longer work, any type of job I was trained for, under as much pain as I was in. I had been told by a PCP at the time, he felt I had some autoimmune problems, & should see a Rheumatologist. With no insurance, no salary, it took also almost 3 years and 2 appeals to get my complete disability, when I did go in front of a disability judge. By this time, I lost my Dad, & was my Mom's only child, & had to move back to TX. After many surgeries, knee replacements, shoulder replacement, elbow surgeries, back and neck pain, my PCP did some extensive blood work and I had Lupus, RA, Sjogren's and Raynaud's. Which all explained the deterioration of my joints, connective tissues, my spine "giving way" (I also have osteoporosis in the most severe of forms), yet still I fought to find a pain specialist, someone who could take care of the pain problems, that had plagued my life for 40 years, and that meant medications. We "fixed" what could be fixed, but some things are just going to cause chronic daily pain, and the only way for me to have any quality of life, is the medications, that are of course opioid in nature, narcotics. They are the only things that "helps" me to get the "edge" off the pain, so I can have somewhat of a normal and decent quality of life. I have never had a "high" off of them, not even wanted one. All I want it to try and have enough pain control, that I can try and enjoy what time I have left, after 55 years of living with so much severe pain. And no they cannot "fix" or completely rid anyone of all pain. But, they can give enough relief so you can deal with what pain is there for the most part. It infuriates me to be "lumped" into those who "choose to abuse". The people that either steal medications, or "quacks" that cause us as legitimate pain patients, to feel like we are "addicts", which we are NOT! If I could throw away all medications now, and not have pain, I would be happy to. Even after all I have endured, I came down with abscesses from my "Rheumatoid Arthritis" medications, so those had to be stopped. I need two new surgeries, due to degenerative disease in my cervical and lumbar spine again. My story and journey through this is so long, that I am writing a 3rd book about my own nightmare of pain, of not be treated when I should be, not getting the medications I needed, and the horrible time I see so many others having, all of their stories much like mine. I am an Ambassador for the Arthritis Foundation, an advocate, doing activist work, all for autoimmune, chronic pain, heart disease, trying to get new medications, new treatments, a way to change the "Faces of Pain" forever. We can and need to move mountains. "

Saturday, December 12, 2015


CDC Re-Opens Door for Public Comment on Opioid Prescribing Guideline Amid Scrutiny and Criticism

CDC Re-Opens Door for Public Comment on Opioid Prescribing Guideline Amid Scrutiny and Criticism

Under mounting criticism from patients, physicians and industry, the Centers for Disease Control and Prevention (CDC) announced it has opened a second period for public comment on its Guidelines for Prescribing Opioids for Chronic Pain, the agency made public in a notice in the Federal Register.
CDC’s draft guidelines will be available on Monday, December 14, 2015, at for review and comment. The public comment period opens December 14, 2015 and closes January 13, 2016.

see the link about with the rest of the information!!!!!

Here is another link about this that came out this morning!

Will CDC Start Listening to Chronic Pain Patients? — Pain News Network

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....

Saturday, March 21, 2015

AS YOU Go to DC Next Week to Represent ALL with so many health issues, may WE ALL do our part to BREAKTHROUGH the disparities that hold back Cures...

Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!

Friday, October 24, 2014

Lupus?RA?Sjogrens?FM?CFS? Early Onset Parkinson's or Bartonella??? Here are some links and ideas to consider....

I am sharing this with all of you, especially those of us with Lupus, RA, MS, FM, ME/CFS.... ALL of us have had years before a diagnosis, then it seems we go through more than one most of the time... and then wonder if "the doctors have it right" or if they are also grasping at straws, and giving us a "diagnosis" to just calm out fears. I know for myself that is true. About a month ago, I saw a dear friend from high school, and am very happy she is back in our hometown. She had mentioned some information about a particular illness that usually comes from being around cats, or other animals, or things like fleas, ticks, than can be carriers of the illness Bartonella .... she was telling me about a doctor who of course more of them on the side of the "animal type" cat scratch fever... that just about all of us have heard of. The "symptoms" can be almost to the "Tee" of Lupus, RA, FM, CFS and so forth... severe fatigue, low grade fevers, flu like body aches and pains, joint pain, headaches... many of the exact same issues we have, brain fog, that are associated with all of these illnesses. Well, I took what she said to heart, about the doctor now believe that this illness, can very well be, the great imitator of some of these illnesses.... and later people have found out, they may not be "ill" with things like Lupus, or RA, or be manic depressive, or even one woman was diagnosed as schizophrenic... but they were infected with the Bartonella bacteria. Thus, it also goes right along with being very close to Lyme disease, and also I just has mentioned, after hearing from a friend that has "early onset Parkinsons'" that Lyme disease can be the great imitator of early onset Parkinsons.... so all of this kind of hit me like a ton of bricks... it could be that there are "many" or at least some of us that don't have any of these chronic illnesses, BUT have gotten Bartonella one way or the other (by the way I've been bitten badly by one of my cats in 2005 while in CA) and I've also had two dog bites in my life... so I have to wonder if in fact there is a possibility that all of this is some how related... I also know if you walked into one of your doctors offices and mentioned it, they may look at you like you are crazy and call the nut house to come and carry you away... but I have one link I am putting here and will put this along with more links on my blog.... if you are also interested take a look... it sure does ring bells with many of my symptoms.

Wednesday, March 19, 2014

More on RA- Critical News when it comes to how it Systemically Effects the Body...

There are several great links, article and information that is critical to know about  RA and how it can Systemically Effect the Body. Many people think of "Rheumatoid Arthritis" as "arthritis", which is TOTALLY WRONG!  "RA:(Rheumatoid Arthritis) can effect just about every part of the body... starting at the joints sometimes. Yet, it can cause horrible fatigue, heart problems, liver and kidney problems, problems with the brain, with they eyes, with the ears... and so much more. That is why you see so many of us trying to "get the word out" and spread the news these are serious illnesses that when you delve into them, you find they can be "deadly". Lupus, which is another Autoimmune Arthritis,  can even be worse, damaging skin, bones, the heart, liver, the lungs, causing severe fatigue, brain fog, and leading to heart problems and stroke problems. Women and/or men with RA have a 50 percent chance HIGHER in have a heart attack or stroke.

When I saw these a moment ago, I wanted to post them. They go along with the WAAD14 and all of the information, research, and activist roles we are in with the IFAA, the Arthritis Foundation, WEGO  and many others out there trying to get better research that would lead to a earlier diagnosis, earlier treatment, less sign effects & catch these illness BEFORE they do GARVE Damage as they have on many of us.                   

Thursday, December 5, 2013

Whittemore Peterson Neuro-Autoimmune Institute

More News on the World wide front of Autoimmune Illnesses... and another "term" new to me "Neuro-Autoimmune?

I just got a "newsletter" from the Whittemore Peterson Institute. It contains a great deal of the research their doing in regard to FM/CFS/ME. Of course their beginnings are from the 2 doctors that actually discovered CFS/ME - and FM as a "real illness". Most know the story about the small town in Nevada, where suddenly many residents that were very healthy suddenly, with no explanation became so very ill that they were unable to work. This "mysterious illness/syndrome" whatever you want to call it, was bringing in patient after patient to this small clinic where the 2 physicians quickly became overloaded. Years have passed since the first "signs" of these illnesses began. We have been through all kinds of phases, as patients and I can say doctors also. NO one knew much about these. Doctors thought for the most part patients were (especially female patients) were "depressed" stressed, or plain hypochondriacs. Often with a recommendation I am sure that you need a "shrink". Also it was a "waste basket" diagnosis for awhile. Doctors saw patients with some symptoms of FM, CFS/ME thus if they could not really get a good understanding of what may be wrong with a patient, they had FM. And they left a doctor's office horrified. I know I did! I was told this MANY years ago, back when it was either put upon mainly women who exhibited many of the symptoms, and were "busy" wives, Mom's, employees, "chief, cook and bottle washer" of their lives. So "stress" and "depressed" was how we were treated. No really know "reason".. not a virus, not an infection, not a flu (even though symptoms can and are often "Flu" like)... and not a whole lot out in the realms of medicine to explain it. It really wasn't until about the last 5 to 7 years, I've seen a dramatic change in how patients with these illnesses are treated. First of all, you are taken "seriously". Now, FM/CFS/ME are REAL illnesses, so you have a REAL DIAGNOSIS, thus you expect  explanations of why, how, when, what, where and why?  

Why? You also expect to be told what the "treatments" are, and when will I "get over this"... "yuppie flu" (another horrid term used)??? A couple of years back the Whittemore Peterson Institute became very well known throughout the world. They seemed to be "the beginnings of those questions, and also possibly how to get better, treatments, and mainly what it is, how did I get it? They came out with a huge "clinical trial" per se... that showed great promise to those inflicted parties. It was based on "mice" and a "viral" type manifestation, and it spread like wild fire throughout all of the social media, twitter, in news articles... patients, doctors, everyone was talking about this "answer" to these illnesses. It was a bit of a while, but after the glory came disappointment. It was told that these "trials" had not be as exact as the should have been. There were many errors made during all of these that caused for the entire study to be trashed. This "retro" virus that all had hoped answered the call, turned out to be not trustworthy, incomplete, and just brought a downer to those in the middle of these illnesses. Since then, WPI, has been doing some incredible research by many very great people in the medical world, and the discoveries that they are now making DO SHOW GREAT PROMISE! As I was reading over the newsletter a little while ago (and is the POINT to this long post, is that NOW these illnesses are being "grouped" more as "neuro-immune" diseases. In fact the WPI now has their clinic speciality labeled as "Neuro-Immune" Diseases. As I read this, what I have said for a LONG TIME, and what brought it really to hit "home" of course "immune". I've been SAYING for YEARS, these illnesses are in the same scenario and are "autoimmune illnesses". They just have not proven it, but now, "Neuro-Immune surely says it all. I told my husband I WISH so VERY MUCH, I had went onto BECOME A RESEARCHER, in these realms. If I were not so chronically ill, and taken over with brain fog, plus was still around 40 years old... I WOULD GO BACK TO COLLEGE AND GO INTO CLINICAL RESEARCH FOR THESE AUTOIMMUNE illnesses/diseases/syndromes.. it almost breaks my heart, that I long so much to be able to "find a reason, find ways to stop these, and a ways to treat those already with all of them. And I am speaking of All Autoimmune Arthritic and Autoimmune illnesses in general. Life hands us what we are so often not able to reason with... and I don't know "why" I did not more fulfill my college and so on when I was younger... plans change, you "fall" more like "trip" into love... and you let YEARS slip BY... you are 50 +, and chronically ill... thus your "research" is what I and all of you do... advocacy!!! I guess this post is for everyone... ill, not ill, young, elderly, college, high school, wherever you are, whatever you are doing, whatever your dreams maybe.... don't WAIT until all the YEARS PASS you BY... and then like myself, have to live with some regret, that what I almost feel I was "meant" to do, slipped through my fingers, like sands through a sieve. by the way I think I can attach their newsletter....I have their newsletter in a PDF... I'll try to put it on here and then let you now.... in the meantime here is their website

Friday, November 22, 2013

Fibromyalgia new theory on Adrenal/ Thyroid glands & certain chemical levels could be a cause...

One of the largest mysteries I believe in the last decade has been(  FM) Fibromyalgia  and Chronic Fatigue Syndrome. There has been a tale to tell on every piece of the wide spectrum of these "illnesses", from it is that women are "nut" cases, it does not exist, to it comes from some type of tests on rats that was supposed to have been answer, & then it was finally and formally called FM, an illness.

Most of us that have an autoimmune arthritic disease (es), have probably had this be a "diagnosis" somewhere during your hunt for the "real and definite answer"... may not be "red" but truth is what we seek.

Then there is the huge dilemma that has been the talk of any and everyone that has FM and/or CFS(they seem to run hand in hand) from the Whittemore - Peterson clinic I believe right at the state lines of Nevada and Colorado. For several decades the talk about how almost every "well" person in town came down with this "yuppie" flu, I believe was one of the many names it was called over the years. Yet, as I think about the "glands" in our bodies and how much they control everything, it would make perfect sense that at least as far as the symptoms, "they fit the bill." Our Adrenal glands, including the pituitary gland, the thyroid gland, the adrenal glands, I think Just lately I found out there are like 400 glands in our bodies. Those two adrenal glands are vital for us to live. They control weight, appetite, have lots to do with hormones and how they are regulated in the body. They control your temperature, and without them would would quickly perish. But due to fatigue, lack of being able to withstand temperature changes,  and many other things that keep our bodies running.

If you are interested in more information as to not only adrenal glands but the endocrine gland system, you maybe quite surprised at what some of them are. Ovaries for one are an "endocrine" gland.

Onto this new article and FM. I've always in my own thoughts (I am NOT a doctor and do not perceive to be) just IMOHO, they are some type of an autoimmune disease.  AFter all think about HOW MANY OF US at one time or the other, or even now have, have had that diagnosis. Then how many of us felt we were given that as a "junk" or "Trash Can" illness, so we would shut up. Then they fill us full of antidepressants and tell us it is "stress" and "anxiety"... we need to just "chill" . As I sometimes say "just another brick in the wall"... now they are trying to convince you it is ALL in your HEAD! And the very sad thing is, there are doctors out there today, that have heard all of the reports, yet they still throw out FM, when they can't seem to find something to "stick". I thought the portion about "lab work" and those quote "normal" ranges that come from the labs frequently. And as I said on a post of FB, I've had it happen twice to me as of lately. I called them on it after I did some research, and U was correct. That "so-called normal" range was NOT normal for me at all. Both cases caused me to have to stop one medication and the other I had to take a new medication for. Had I not pointed those out to the doctors, it may have been looked at later, or possibly not until I had further symptoms. So, it is just another reminder to WATCH OUT FOR YOU! It is a critical thing each of us with these types of chronic illnesses MUST do, to have a better quality of life....

Wednesday, September 8, 2010

Hectic Week - Lots going on... Dealing with Lupus Flares, Fatigue and Pain

There is lots out there I am putting on Face Book, along with on some of the sites where I belong and blog. It seems there are so many worthy places to find good information, great advocacy, lots of links where you can read the latest on so many illnesses, and what is being done to fight them, that I try to spend my time between those, and my own blog, my own writing, my book that I so want to desperately complete, and reading. It takes patience, and stamina to just post, especially when you are dealing with even typing making your body hurt. My right shoulder is just giving me fits. So, trying to sit here and type for any length of time is a nightmare. I was so hoping I would see some relief from the cervical injections, but I know those probably will not help my shoulder pain. About the only thing that is going to relief that is replacement surgery, plus now my pain specialist is recommending an implanted pain pump.  Yesterday, I did go through the cervical injections. I am hoping that it might help somewhat, but I have my doubts. The chronic pain has been with me now for so long, and my joints and discs seem to be falling apart more quickly, as the days pass. It truly sucks. It is hard not to want to belong to so many of the pages, groups, blogs and so forth on Face Book, and the other sites I have found. They all have lots of incredible people that are trying their best to do good, to help advocacy, to write, to support others, that it seems impossible not to belong. What I need to do I feel, is begin to take all of my posts, and make sure I keep them. Much of my own writing that could go into my book is right there in my daily posts online.

So, I am making myself a promise starting today. I am going to begin writing everything down in my journal that I post daily. I will try and go back and copy some of the things I have already written, and be sure I put them in the place I am writing for my book. I now realize that taking my posts and doing that would put me in the realms of having my book. I thought about calling it something like - The Dichotomy of Chronic Pain and Illness - Pieces of Me. Which would fit right in, through the daily chronicle of my living and learning about pain and chronic illness. For I am the bits and pieces of my own psyche, my own suffering, my own learning, posting, blogging. It is a daily look at what it is like to go through living with Lupus, RA, degenerative joint disease, the medications, the ups and downs, the flares, and how being online can makes a world of difference, where you can find support through groups, lots of others that become a part of your extended online family, where you find love and caring through others, where you learn more about your diseases, conditions and illnesses, where you find doctors, research, clinical trials, and those passionate about making life better. Without my own line friendships, there are days I would totally give up and give in to be content to sit on my butt, and say to hell with the world of pain. That would be the easiest thing to do. This month is Pain Awareness Month, it is also Invisible Illness Month, that goes right along with many of these illnesses. Those of us that fight these syndromes, illnesses, diseases, and the pain and suffrage that go along with them, can tell you we get to the point daily, we would like to "throw in the towel", but faith, hope, and the love of others keep us coming back to our computers to find people that keep us going, even in the darkest of times. When we can't sleep from pain, when we have endured yet another surgery, or a failed treatment, we come online and there they are, those that want to lift us up, give us hope that we have to smile to ourselves.
It gets me to thinking about all I write daily on these blogs, and groups. I learn so much from so many, I get lifted up when I am at the bottom of the barrel of despair. These people deserve a huge round of applause. They work daily to make life more bearable, even in their own illness and pain, they come to Face Book, to pain blogs, to Lupus blogs, to so many wonderful places online to support those who hurt also. I feel these wondrous people, are just like myself. They are Moms. Dads, patients, caretakers, professionals, novices, writers, poets, every day people, just trying to make a difference. We all want our own pain and suffering to go away. We all want to wake up one morning to read headlines that discoveries have been made for all of these nightmare illnesses and see that the puzzle, the mystery has been finally solved. We want to read some grand medication or therapy will just blow into our lives, and we will be cured for good. We don't want to give up or give into what hurts, but there are days, weeks, months, and even years, that feeling well is just not in our cards. So, we blather on, online about the great days, and the days that suck. We find hope in one post, or online through a news article. We score over the websites that tell us that a cure is near. Just like Benlysta. I have followed that one medication now for a couple of years. It has given me hope, that it will be the miracle of all medications, that it will be my cure all, for the Lupus Flares. Each day I mark off that approval from the FDA is just one more day closer. Yet, will it really be the end all to Lupus flares? The results of clinical trials are saying it is definitely worth trying. But, until it is out on the market, and every day Lupus patients begin to use it, we can only go by what the pharmaceutical companies, and their clinical trials gibberish tell us. Like myself, it is difficult to put your trust in what these companies tell us. After all, they are the ones that prosper if millions take the medication. They are the ones to get rich and benefit the most from us as patients. If the doctors press us, in desperation we are just about willing to try anything if it means we might not have flares, we may see pain relief. We will go to the ends of the galaxy, fly through the black holes of where ever we need to if we remotely feel we might find the final frontier of relief, through the many pills, injections, infusions, patches, and creams. We spend our time awaiting that clinical trial to say, this is the Holy Grail of making us well.