Showing posts with label Fibromyalgia. Show all posts
Showing posts with label Fibromyalgia. Show all posts

Tuesday, October 17, 2017

"National Pain Report and a New Book about FM and CFS....


 

FIBROMYALGIA and New Book You maybe interested in.....


http://nationalpainreport.com/new-book-gets-to-the-underlying-cause-of-fibromyalgia-8834612.html


Since I really LIKE what National Pain Report says, here is a new book they are talking about, and it's in regard to FM, (Fibromyalgia) which I know MANY of you have, have been diagnosed with it, or told you "may" have it or what they also referred it as, "Chronic Fatigue Syndrome"... I know MANY years back when I was trying to find answers to my "nightmare of several times a month migraines" I had several physicians tell me they thought I "may have" Fibromyalgia, or then also they referred to it as, Chronic Fatigue Syndrome... 

back then it was so NEW, they really had NO CLUE about it at all what it was, what caused it, or EVEN IF IT WAS A REAL DIAGNOSIS... I know MANY women continued to "hear" it as a diagnosis, when doctor's did not KNOW what was wrong, with WOMEN especially so it was either you have FM, CFS, or you are "stressed" or "depressed".... which aren't we ALL those things, whether we are "chronically ill" or NOT... plus being stressed or depressed it NOT just for women, but MANY men now days also... but since I realize that IMOP (which my opinion is not really a matter here) but I THINK that FM is an "autoimmune illness" just as any other like Lupus, RA, Sjogren's, JRA, and the

Saturday, February 11, 2017

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

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

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

Wednesday, January 11, 2017

Chronic Pain Patients and the "absurd" information on abuse and New Medication for pain with Abuse Deterrent in it

https://www.madinamerica.com/…/stop-the-war-on-chronic-pai…/



 I found this article interesting and more to the point when "chronic pain patients" are attacked for something they are NOT causing. I great example (I was not attacked but) since I had to have surgery yesterday, of course I had to be "NPO" thus I could have have ANYTHING to eat, drink and even my meds were taken away after midnight... all of which is necessary, BUT my surgery was NOT until 1PM the next day!
So, like MOST told me and I know myself, I could have been given my critical meds, such as my muscle relaxer, pain med, & my anxiety med...but I was made to wait UNTIL AFTER 3:30PM or longer, rather than just stopping it at 8 hours...


IF the surgery would have been early morning such as 6 or 7 AM etc then it would make sense.. anyway, same with this... "true and legitimate patients are being "punished" or horrified, because with all of the "crap" out there in the news we fear being without our meds.... yesterday, I was in horrid pain by the time I got to the hospital after waiting so long, then checking in, getting prepped for surgery, & then going under (which I was thrilled to go under anesthesia, knowing then I would be free of pain, plus I would FINALLY get some pain meds for relief.... 
  

It is a nightmare if you live in terrible pain daily, or almost daily, and then are terrified all of a sudden your meds could be jerked away... so those that don't understand, should be "educated" on just how chronic pain invades and takes over your life... and quality of life goes null and void, for the patient, family and way of life...

And from the Pain News Network....

https://www.painnewsnetwork.org/stories/2017/1/9/fda-approves-new-long-acting-painkiller


FDA Approves New Long Acting Painkiller  

 

Just came out a couple of days ago!





Friday, July 25, 2014

Bio-Medical Research, Congress, and Lupus Research Institute

 

Urge Your Senator to Co-sponsor Bill Supporting Biomedical Research at the National Institutes of Health

To continue our national commitment to research and fighting lupus and other diseases, we ask U.S. Senators to co-sponsor and support ''Accelerating Biomedical Research Act"introduced by Senator Tom Harkin (D-IA) July 24, 2014.  The Bill aims to prioritize funding for the National Institutes of Health to discover treatments and cures, maintain global leadership in medical innovation, and to provide consistent, reliable source for biomedical research. Lately, the NIH budget has been flat lined because of the budget battles in Washington. We need more federal funding for biomedical research on all diseases, especially lupus. The much-needed advances in lupus treatment of tomorrow depend on investment in NIH-funded research today.
Click the button below to write your legislator or click here to call your legislator.

 

http://www.congressweb.com/LRI/12

 

We Advocate on the Hill. Each year the LRI mobilizes representatives from the National Coalition to visit legislators on behalf of the lupus community throughout the country.  Learn how you can be a Virtual Advocate without ever leaving home!

Friday, December 13, 2013

Autoimmune Arthritic Illnesses - Finding it not "Easy" ... To Be... Me.

An Autoimmune Space - Is it every Easy - to Be - "Your" own Me?



I heard this song last night on a movie we were watching... Oddly enough I found that David Grey's songs really hit home with me, when I was brand new in a huge city. I had never lived anywhere but a small town, & huge cities were something I "visited" to go shopping, to doctors and so forth. I got "introduced" to this man's music just after moving there, when my entire world had been completely transformed. I had gotten on a bus and road for almost 3 straight days and nights, to a job that I had never done, in the middle of Seattle that I knew nothing about, would have to "learn" how to go back and forth from Seattle to the islands around such as Bainbridge, drive in a city that had almost "mountains" in places in the main streets & to where every single thing in my whole life was going to be in the "background". I shall be "reborn" in a manner, you could call it. I was doing a job I never had done before, which was being an assistant manager at one of the apartment buildings in the "creative & quirky" part of Seattle known as Capitol Hill. Even the way of speaking was different there. Words we frequently used in Texas were not said much in Seattle. For instance, the "grocery store" as we called it most of the time in Texas, was the "market" in Seattle. Dinner was used, not "supper".  I slowly "self-learned" to try and "lose" my "Texas dialect" and try to sounds more like a I was "home grown" in Seattle. Of course you can take the girl out of TX, BUT you can never take the Texas Accent out of the girl! Just about everywhere I went the first question was after I said "Hello" was where are you from? I got asked if I were from "GA, MS, NC & several others that people tend to associate with a "southern accent". Yet, even though Texas is considered southern, they have their own unique accent. In fact we sound like a bunch of hicks from the hills. I couldn't completely take away the inflection from my born and bred accent, but what I could do is sound "less" like a southern dummy, and more educated. By the way, the FIRST thing just about every person, man or woman, said to me after I opened my mouth and they heard me speak was "Oh, that is so charming"! Man I almost hated to hear someone say that after while. I did NOT want to sound "charming". To me that just indicated I still sounded like some South Southern woman, who was about as dumb as a brick, drinking iced tea with a sprig of mint in it, wearing some frilly, flowery dress & ordering her many "staff" around all day long. Thus charming did not set well with me... LOL...
Of course being in Seattle for 5 years did "rub off" on me. I began to use "their" colloquialisms. In fact, I brought some of those back withe me to Texas. I never "wash clothes", I do laundry. I never to go the grocery store, I go to the market, the ending meal of the day is not Supper, it is Dinner. By the way I did learn another tidbit of information on "West" coast speaking from a dear friend in Lancaster CA.  One day I was talking about their local sheriff's department staff and I called them the "county boys". She about fell over laughing as she asked me to say that again. Never had she heard the term for the County Sheriff's Officers, called the County Boys. Another one she had not heard, and I noticed it in Seattle also. A "toliet" on this side of the USA is known as a toliet. In Texas it is also a commode. Along with several other "slang" terms. The "pot" is one my Mom says all the time. I think I've rubbed off on her a bit though. I notice now she may say restroom, rather than the pot etc. And when you went to “do laundry” on the western part of the country, in the south you were “washing clothes”. Now the funny thing about that one is due to my Texas accent, it sounds more like “warshing clothes, rather than washing. So of course that just made her laugh more. In fact, I have so many little “sayings” “comparisons”, things my Dad would say, and you hear from on television now or in a place that is quite southern in nature, or Texan, you will hear a few of the sayings my Dad said so often they just rubbed off on me. For instance if you are chronically late for an appointment, Dad would say “He would be late for his own funeral”. Let’s say some one happened to be a bit uneducated, or just say something “off” that may sound a bit stupid, he might say “He couldn’t pour “pee”, with instructions on the heel, or if someone may be a bit frugal with their money, then you might hear, “He is so tight he has to screw his britches on in the morning”. LOL!!!! Believe me, I could write an entire book, on just the sayings I heard all my life, and many of them come straight out of my mouth quite frequently. My husband told me I had so many of these “sayings” that came from my years of growing up with my Dad, and here in Texas, that I should write an entire book on them. I probably do have plenty for a short book honestly. When I sit here and begin to think about them, I can recall hundred’s if I made my mind up to get them all written down. 
The point of all of these things that I am talking about is to find out, even though all of us speak “English” and I guess technically, “American English”. Yet, if you traveled through most of the 50 states, you would find there are all types of sayings, dialects, or colloquialisms in just about every state. I also found out that in some states, they really do not have a quirking type of accent, such as someone from the Southern states, and so forth. They barely have an accent at all. Seattle was that way. There really was not any “accent” or particular dialect. That was what made them different, rather than having a great deal of inflection in their speech.

Onto, the beginning of all of this. Being an absolute music lover, of almost all types of music except Opera, I listened to music almost 24/7/365 when I could. I had probably heard a “David Gray” song in TX a time or two, but I never knew who he was. So, some of the people in the Seattle area really loved his music. Thus, I was introduced to his particular style and sound, of lyrics and music & I just loved it. His lyrics “spoke” to me, especially about how I had came through such a horrendous journey, allowing lots of water to flow under my own bridges, as I burned some, mended others, and built some new and stronger ones.  Another one of my favorite songs, and it is the chorus that I truly love is

(There’s so much time to make up, everywhere you turn, time we have wasted on the way, so much water moving underneath the bridge, let the waters come and carry you away.) Crosby, Stills, and Nash….

Then I hear these lyrics by David Grey, along with many of his songs, and lyrics. When I heard this one in particular, it summed up for me, all that at that time in space for me, I felt the same as the song says, “It’s not easy to be…. me”.

(Lyrics by David Gray - It’s not Easy To Be Me.

"I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me 

I’m more than a bird…I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

I wish that I could cry
Fall upon my knees
Find a way to lie
'bout a home I’ll never see 

It may sound absurd…but don’t be naive
Even Heroes have the right to bleed
I may be disturbed…but won’t you concede
Even Heroes have the right to dream
It’s not easy to be me 

Up, up and away…away from me
Well it’s all right…You can all sleep sound tonight
I’m not crazy…or anything… 

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees 

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me 
inside of me ...... inside of me ...(x2)

I’m only a man in a funny red sheet
I’m only a man looking for a dream


I’m only a man in a funny red sheet

It’s not easy ... wu.. hoo.. hoo..

___________________________________________________

I don’t mean this in a haughty, self-righteous way. I meant it in a way, that everyone expected me to be this “Super Human”, with the answers to it all. It seemed I was expected to be “perfect”, yet I was just a woman, and women have to bleed, and I was truly looking for a dream. Part of that dream coming true was found by me in Seattle. 

Every once in a while my Mom and I are talking, and some subject comes up about me and living in Seattle for so long. Honestly, if circumstances wee different, I am almost positive I would still be in Seattle. Where you did not need screens on your windows, no bugs and flies were. For the most part your windows could be open much of the year. Many places had no air conditioning, because you didn’t need it. The seasons there are so mild, Summer is rarely very hot, the Winters are somewhat cold, and you do need heat, much of which was baseboard heating, that I had never seen. Or many of the older apartments in down town still had the old fashioned, boiler type heaters. The ones that are usually sitting in rooms, all iron and they go in loops. A boiler keeps the water hot, and it flows through pipes up to these iron steam type heaters. I had never experienced anywhere that did not require screen on windows or A/C units. 

Mom sometimes brings up really silly questions that I’ve answered 20 plus times about my being there for those years. I healed in Seattle. I did NOT WANT to “come home” to Texas. When that bus hit the road from Ennis, and I got to the Dallas bus hub, and hopped on the one that would take me to Washington State, I never looked back. The healing of my heart, emotions, mind, and my body at that time began. I felt alive, and as if the weight of the world was lifted off my shoulders. As those years began to slowly heal me there, the last thing I wanted to do, is come back to the very place, that caused me so much grief. Sometimes it is difficult for other people, especially those closest to you to understand ideas about loved ones because they are too close to the situation. There is no way to look at something “objectively” if you have your own heart and spirit. 

The “waters” that carried me under those bridges, came full circle and brought me back to where I began the journey. Yet, this time I was much different than when I left. I had put my own self back together again. I did it by myself. I didn’t have anyone to “tell” me or express to me what “they” that I should do. I did exactly as I wanted to do. So, when I entered my “home town” after 5 plus years, I was very different. In a good way. I’m not sure my two kids and Mom, may not have seen it, but I knew it. That was what counted. One thing that I didn’t realize was that I had not fully grieved the loss of my Dad, earlier that year. I thought I had. I felt angry, bitter, mad, sad, and so many more emotions that I was not expecting to be here to slap me in right in the face and hit me in the gut so hard. 

After once again delivering a small novelette to my readers, I am sure some of you maybe wondering “does this have one thing to do with Autoimmune Arthritic Illnesses”?


To answer that question is “YES! Absolutely!” Although I had shown many “symptoms” of Autoimmune Arthritic Illnesses, for many years of my life, even when I came back to Texas, 2005, I had not been given a diagnosis of any type of autoimmune illness. I had heart Degenerative Disc and Joint Disease. I had heard that my joints were just “Falling apart”. I had 2 Arthroscopic knee surgeries in 2007, one on my right shoulder, my left wrist repaired, and was in chronically severe pain every day of my life. I was exhausted all the time, my brain seemed not to function, I began to “feel” sick frequently. Then came the “pain pump” surgery to put in internally. There has only been 1 doctor back in Seattle to mention he felt I needed to see a Rheumatologist. He was sitting that appointment up, but we moved from WA state a few weeks before the appointment. So, I am not quite sure what brought the entire symptom/subject around to my PCP and I. I believe it was just a mixture of symptoms, and possibly my own research over these same symptoms, pain, fatigue, my joints being so fragile, my fingers slightly bent, and so forth. So, between his thoughts on it, and my thoughts on what I had read, he ordered about 28 tubes of blood to send off to do the ANA and every other possible test for any type of autoimmune disease. It took them a couple of hours to even get all of that blood out of me. My veins roll, and are thin. So believe me when I say it took several sticks, and several lab techs to get enough blood in those many, many tubes. 

A week or more later, I got a call from his nurse saying he had the labs back and he wanted to discuss the results. Of course I knew something mush have shown up, or he would have just had her tell me all of the labs were normal. I “hoped” as horrible is this sounds, they all of those lab tests showed SOMETHING WRONG with me! Sure enough my ANA levels, inflammation blood labs were off, along with several issues the lead to him thinking first of all I had Lupus, along with Osteoarthritis. He immediately sent me to a Rheumatologist who was very intelligent. He was elderly, and probably needed to retire, but he still knew what was important as far as labs, and as he examined me, along with asking all the questions he needed answers on, he felt it “maybe” Lupus/RA, BUT due to the wide variety of symptoms that he seen, he first diagnosed with Mixed Connective Tissue Disorder. I did not know a great deal about this particular chronic illness honestly. I first thought maybe it was another one of those “trash can” diagnosis, used when doctors can’t put an exact finger on a real diagnosis. He had told me on the very first visit, after doing X-rays of my feet/toes and hand/fingers, that I showed quite a bit of damage in my toes, fingers and especially my thumbs. He also told me I had Raynauds. He mentioned that I suffered from “hyper-flexing” of my joints. We call some people “double jointed” when they seem to be so limber, but this meant my joints tended to bend backward rather than just straighten out when I was walking and so forth. In other words rather than my knees “stopping” in their proper position when I took a step, it was like my knee would continue to push out further, thus many of my joints did the same. It was also another symptom, of all of the autoimmune disorders that were to come. I went to him for about nine months. He did a great job with extensive blood work, and examining me with each visit. He also had the greatest bed side manner, plus he had to be pushing 75 or 80 possibly years old. Yet he would remember each and every detail about the patient and if a spouse came, the spouse also. He called Jim by his name every visit. He would ask him questions, and have Jim involved in the entire visit. He also rarely looked at my chart. When he came into that examination room, he had everything in mind. He has to have the the best memory I’ve ever seen. Once all of the blood work, X-rays and so on were complete, and he still decided he was not quite sure about the Lupus/RA yet, he put me on Plaquenil. The only ONE thing that both my husband and I really was disappointed with him was, that he did NOT believe in “aggressive” therapy. In fact he even showed on paperwork to still be doing “gold injections”. Which as far as I know have been not done in many years. He also was truly not versed on the newer medications, such as the biologics, that were really coming out strongly about that time. 

So, I began the hunt for a new Rheumatologist. That turned out to be a nightmare! Little did I know many of the “Rheumys” out there, specialize, in one way or the other. I met one that believed ONLY in labs. She was not going to budge on any medications, and she did not care how badly the pain was, stiffness was, and honestly almost took me off of what medications I was already on. At that time I was still on the Plaquenil, plus my regular MD had put me on Methotrexate by then. I went to about 3 visits, and ran. I went to another one that sounded promising. He was more of a “research” and clinical trial for Lupus Rheumy. I ran into one that supposedly was one of the top Rheumatologists in Dallas. It was this huge, fancy, entire group of doctors who had 3 floors in a office building in Dallas. It did not take me but around 20 seconds and I ran. He did not agree with anything any of the other physicians had said. He frankly told me he thought I was just another one of those with “Fibromyalgia”, and that UNLESS my blood work was extremely abnormal, I really was mostly wasting his time and mine. I guess he was a nonbeliever in sero-negative  Rheumatoid Arthritis. Besides, he was just another “click” up the ladder to the researchers, clinical trials bunch (don’t get me wrong I am all for clinical trials) but there was just something about him and another one I saw that gave me the creeps. I’ve never looked it up, but I know in some form or fashion, these physicians that do participate in clinical trials must get compensated for it. After I seen and heard what I did, I figure they must get a pretty heavy load of compensation in one way or the other for participating in them. 

FINALLY due to a dear friend, who in fact I met on Facebook, led me to the very BEST, venturing to say Rheumatologist in TX for sure. I bet he would rank very high up on the scales in the entire nation! He is an “aggressive” thinker. He also LIKES the fact patients educate themselves, research their symptoms, medications and illnesses. He appreciates those who help him, by helping themselves. In several occasions, I’ve went in to see him with a note about a different medication, or if we can try this, that or the other. And unless he has some really specific reason for NOT using it on me, which it fully explains his reasoning, “we (him and I) have followed some of the things I suggested. As I always say, I am NOT an expert, not a doctor, etc…. but when it comes to MY OWN BODY, I am ranking very high on the expert level of what I feel will help or not help me. Most of us are “experts” when it comes to our own bodies, illnesses, medications, and so on.

Now, to the final “summary” of why all of this long, drawn out detailed story comes about, after me hearing a song that is so “special” to me is, I found my very first deep understanding of myself, and my own life, that 5 years in Seattle. At times is was not a grand picnic. I was lonely some, there was no one there to help me with anything. In fact my car gave me some issues, just before I was leaving on a vacation, and I had to trust my instincts, along with trust people I had been working with, on a mechanic. So, as incredibly much of strength, determination, self-worth, feeling I was capable of taking care of me and all of those good things that so changed in me was only the first leg of that journey.


Alas, what transpired in Seattle to change me, and make me stronger, wiser, and more determined also helped me to be right here, right now, facing each and every hurdle that comes my (our) way.
Coming back “home”, facing the loss of my Dad, and finally facing my own extremely potentially “serious” and could be down right deadly diseases, 8 plus surgeries within 2 years, and all of the other million things here, I WAS able to first of all, be me. I found “me” in Seattle. And “she” came back with “me”. So, “no I can’t stand and fly, and I’m not that naive, I’m just out to find”, “the better part of me” - Even “super people” truly bleed, I’m more than a plane and more than some pretty face aboard a train… yet It’s Not Easy To Be…Me….


p.s. It’s not easy…. for anyone of us dealing with autoimmune illnesses, which rule our very existence so much… to be YOUR own “me”. 

Friday, November 22, 2013

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

http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/nov/11/fibromyalgia-indisputable-proof-claims-uk-research/



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....

Friday, September 24, 2010

Why Always Reporting the Negative side, and never the positive aspects of pain medications?

http://www.nytimes.com/2010/09/24/us/24drugs.html?_r=1&th&emc=th

Yes, another article negatively impacting prescription pain killers from a prominent paper, the New York Times. What I just don't understand is why they are NOT telling the other side of the story, which is how so many people are given their quality of life back, due to these types of medications. Here we are in the middle of National Pain Awareness Month, when positive things should be discussed and told, yet just about every media type, every news station, many newspapers, & other media have chosen to skip over the good news, and put the bad and ugly in words and reports. This is truly infruiating for those like myself, who are true chronic illness and pain patients, we have NO issues with abusing, addiction, stealing, lying, or being one of the "bad" guys, yet this type of representation reeks havoc for our future quality of life. Please join me in making sure we continue to get the GOOD news out about our medications and all the positive ways they affect us.

Thanks so much, Rhia

Friday, October 9, 2009

Little Known Virus Could be the answer to Chronic Fatigue Syndrome

This is a true breakthrough for the millions suffering from Chronic Fatigue Syndrome. Those with it and related diseases such as Fibromyalgia have gone for years with little hope, very little explanation as to the cause, medications, research, and possibly a cure! I am thrilled about the thought of the possibility of some way to avoid or cure this life altering syndrome.

Plus, rather than make it appear it is all in our heads, now there is more proof it is truly a very real illness.

http://www.nytimes.com/2009/10/09/health/research/09virus.html?ref=health