Showing posts with label Migraines. Show all posts
Showing posts with label Migraines. Show all posts

Friday, April 26, 2019

A NEW BLOOD TEST for FIBROMYALGIA! The article says it's 99% ACCURATE!



A NEW BLOOD TEST for FIBROMYALGIA! and it says to be 99% ACCURATE!

I know MANY of you that will be glad to hear this one... they are now saying they have a "blood test" that ia supposed to be 99% ACCURATE in determining whether you have FIBROMYALGIA!!!! NOT that anyone WANTS to hear that they do, BUT for so many years, especially WOMEN have been led to believe it was "all in our heads", or we were too "stressed" or "depressed" or, or ... whatever type of "so called diagnosis"... just to get them "satisfied"... 

I went through this years ago.. when I have the Migraines so badly they would send me to the ER - at times 3 or more times a month! I went to every "known specialist", every medication, from antidepressants, that didn't do a thing buy make me tired and worse.  I went through injections into my spinal fluid, into my "occipital nerves" at the base my neck, the "Imitrex" that I had severe side effects from, and come to find out, those medications I should have never been given due to my heart... I was even given "Thorazine" and the worst was that is given for "bi-polar" disorder, and it built up "toxins in my blood". One day at work, (when I worked in fact at the hospital in Corsicana in the business office - between 1990 to 1996... and I was with a patient at my desk and suddenly, I began "talking about all kinds of things" and had no clue why? I started talking about "bathing suits", and I "knew" something was very wrong.. I accused myself, and honestly thought I was having a stroke, and went down to the ER only to find the "Lithium" was building up so high in my blood stream, 

It was causing me to hallucinate,... then of course therapists, psychologists... even "bio-feedback"  and they even put me as an inpatient at the hospital for 3 days to give me some medication like Imitrex that is a vasoconstrictor.. and it was that "dangerous" I had to be in the hospital and wear a heart monitor while they gave me this medication by IV... t was totally insane what I went through between the mid 80's even until 1999 or so. And as I said come to find out several of those medications I should HAVE NEVER been given. I had my 1st heart attack at 40 in 2000.... not all that long after all of those things took place. Yet for DECADES like you hear many especially women say, if they had tested me further for RA, Lupus, and other types of autoimmune illnesses, 

I believe they would have found the Lupus, which causes severe Migraines and that only thing that helps a Lupus Migraine for me is an injection of corticosteroids, to bring down the inflammation... although a Lupus Migraine is different than other types, which for years from the time I was 17 I had developed "Migraines"... so now that I am off on that tangent...(this article struck a nerve with me since Fibromyalgia was one of the "junk diagnosis" as some call them that doctors gave us when they could not "find anything else wrong" it was ONE of the many I was given and back then honestly, doctors had no clue what it was, just a at the time "rare mysterious illness" that had popped up at the very 1st I believe in Colorado. I will have to verify that, but a small town there "suddenly" had many of it's long time "well" residents suddenly come down with this list of symptoms" and it put many of them in bed, they had to quit their jobs, and it was really a nightmare... d to be 99% ACCURATE in determining whether you have FIBROMYALGIA!!!! NOT that anyone WANTS to hear that they do, BUT for so many years, especially WOMEN have been led to believe it was "all in our heads", or we were too "stressed" or "depressed" or, or ... whatever type of "so called diagnosis"... just to get them "satisfied"...

 I went through this years ago.. when I have the Migraines so badly they would send me to the ER - at times 3 or more times a month! I went to every "known specialist", every medication, from antidepressants, that didn't do a thing buy make me tired and worse.  I went through injections into my spinal fluid, into my "occipital nerves" at the base my neck, the "Imitrex" that I had severe side effects from, and come to find out, those medications I should have never been given due to my heart... I was even given "Thorazine" and the worst was that is given for "bi-polar" disorder, and it built up "toxins in my blood". One day at work, (when I worked in fact at the hospital in Corsicana in the business office - between 1990 to 1996... and I was with a patient at my desk and suddenly,

 I began "talking about all kinds of things" and had no clue why? I started talking about "bathing suits", and I "knew" something was very wrong.. I accused myself, and honestly thought I was having a stroke, and went down to the ER only to find the "Lithium" was building up so high in my blood stream, t was causing me to hallucinate,... then of course therapists, psychologists... even "bio-feedback"  and they even put me as an inpatient at the hospital for 3 days to give me some medication like Imitrex that is a vasoconstrictor.. and it was that "dangerous" I had to be in the hospital and wear a heart monitor while they gave me this medication by IV... It was totally insane what I went through between the mid 80's even until 1999 or so.


And as I said come to find out several of those medications I should HAVE NEVER been given. I had my 1st heart attack at 40 in 2000.... not all that long after all of those things took place. Yet for DECADES like you hear many especially women say, if they had tested me further for RA, Lupus, and other types of autoimmune illnesses, I believe they would have found the Lupus, which causes severe Migraines and that only thing that helps a Lupus Migraine for me is an injection of corticosteroids, to bring down the inflammation... although a Lupus Migraine is different than other types, which for years from the time I was 17 I had developed "Migraines"... so now that I am off on that tangent...(this article struck a nerve with me since Fibromyalgia was one of the "junk diagnosis" as some call them that doctors gave us when they could not "find anything else wrong" it was ONE of the many I was given and back then honestly, doctors had no clue what it was, just a at the time "rare mysterious illness" that had popped up at the very 1st I believe in Colorado.

I will have to verify that, but a small town there "suddenly" had many of it's long time "well" residents suddenly come down with this list of symptoms" and it put many of them in bed, they had to quit their jobs, and it was really a nightmare... NOW they have came a very long way in getting to the bottom of this still kind of mysterious host of symptoms, that can often mimic other types of chronic illnesses.

So here is the URL: https://stayfit247.info/2019/04/24/the-new-fibromialgia-blood-test-is-99-exact/




Thursday, July 12, 2018

Weather, Chronic Pain, Pain Pain and MORE PAIN!

Any and everyone of us here, there and yonder, knows how much the "weather" can effect chronic pain. Other illnesses such as Lupus, RA, Osteoarthritis, Joint replacements, cervical spine surgeries and problems, and many more illnesses are "effected" by weather.

Oddly enough, it was not that many years ago, that I would tell my doctor(s), not that long ago, ONE doctor saw you for just about everything.... that THE WEATHER MADE MY MIGRAINES WORSE! Back then, and as I said NOT that long ago, they would look at me like I was nuts, bonkers, and just needed some reason to "complain", go the the Emergency room for the dreaded Migraines that plagued me from the time I was about 17 years old, until I then began having "Lupus Migraines" about 10 years ago.

Lupus Migraines, as I call them are an entire different "ball game" from regular Migraines. Used to pain medication worked for the other migraines. Even though I had to fight tooth and nail to get it often times, my severe headache, nausea, the grogginess, the feeling of wishing you could remove your head from your body was horrid. Yet pain medications handled the problem, most of the time.

Then when I began having Lupus Migraines, no amount of "regular pain medications" in the world will do a thing for them. I must have a huge injection of corticosteroid, and then 10 to 14 days of Prednisone, the "step down" dose, in order to get rid of that type of Migraine.

Fortunately, getting that help is easier than having to go in for any type of narcotic pain medication. Yet, I still have to have those also, for the other "many chronic daily pains"I dread, must still have my pain pump, and I have pills for "break through" pains, especially during the times when the weather acts nuts, causing it to reek havoc with my entire body. I "had the surgeries" to help rid me of the other pain, from the joints that have just disintegrated over the years. I tried to tell doctors way back in my twenties, that I had "genetic arthritis". Again, although not that many years ago, they just didn't want to accept the fact that "someone as young as I was" could have that bad of joints. Yet, it was true. I tore cartilage out of my knee at 15. But, by the time I was 21 it needed surgery again. Then the other knee, my elbows, my shoulders, all began giving me problems. I had them injected more times than I can count.

After the many, many tests, scans, injections, medications, even was hospitalized for a few days to try a medication that was "dangerous" to my heart, and it didn't do one thing for the headaches.

After having several more joint surgeries by the time I was 35, I began getting through to some doctors, that these problems were not all imaginary, but were truly issues that I probably was born with. I even had double hernia surgery about 4 years ago! The surgeon told me I was probably "born" with those areas "weak" like some infant girls are, and after years of walking, lifting, bending, picking up something heavy and so on, that they finally became fully herniated, and had to be repaired. Even that was a nightmare. I could Feel them, I could SEE them, yet 3 doctors and even a sonogram didn't pick them up. I finally went to a surgeon I trusted and HE could feel and see them. HE knew what to look for, and he also was well aware of some women, were born with those spots weakened. And some went on to develop hernia's that needed repair.

Usually you don't catch me "lying around" or doing basically nothing. I fully believe that laying around, even when you feel like "hammered hell" can just cause you to feel worse, hurt worse, and give you a lack of energy, lack of muscles, an you question, which is better? Am I harming myself worse, by getting up and doing  things? Or am I better off "working through the stiffness, pain, swelling, and all of the side effects that go along with these illnesses?   

What sucks is that although I usually DO feel better up and moving, even if it is slowly, it still at times takes all the energy and will power I can muster these days.  I have people who stare at me when I park in the handicapped place. It's still hard to have "invisible illnesses". As much as is out there about so many of us suffering, with these horrid diseases, yet there are still "uneducated", "mean", selfish people that want to make fun of, or cause us more grief that we already deal with on any given day. Just sitting here trying to type had caused my wrists, my upper back, my hips, all to hurt like hell.

So, me now trying to sit down and write a 3rd book, when I need to spend HOURS typing it out, almost seems as if it will never happen.                                                                                                                                                   

Monday, April 30, 2018

UPDATED PATIENT GUIDE FOR ICER REVIEW OF MIGRAINE PREVENTION MEDICINES

GUIDANCE ON PATIENT SUBMISSIONS DURING PUBLIC COMMENT PERIOD

DUE BY MAY 8, 2018

Now is the time for all of us to tell our journey through the maze of Migraine Hell! Please see the URL for further information or if you would like to participate. 
Here is the full URL to see the information:


https://www.headachemigraineforum.org/icer/

Friday, November 4, 2016

Day 1 - #HAWMC - WEGO- Health 30 Day Blog Challenge - What drives us to BLOG!? (running a bit behind)

WEGO Health Blog/Writer's Challenge Day 1 #HAWMC


I've been a "driven" writer since I was abut 13 years old. I began writing poetry back then, and a few short stories. I was even the "editorial" writer for our High School Newspaper. I took on a few tough subjects, from "Holes in our student parking area", to giving our students more of a challenge when it came to subject matter and getting us ready for what we would face in the real world; after high school and college.

I continued to write in "handwritten" form, before computers. I have notebook after notebook filled with my writing. I have most of them still with me, and have been able to put much of the material on the computer.

At the age of 14, I had a neighbor who was a RN at our local hospital. I seemed to "soak up" everything that was "medical" in nature. I volunteered as a "Candy Volunteer, I guess then called a "striper" and I stood beside her every chance I had spending all of my free hours learning about the medical world. From watching them deliver babies, to taking care of those babies and Moms, and learning at that time how to "pack instrument" packs, because back then most instruments were not "disposable". We had certain instruments for certain surgeries that had to be cleaned, disinfected, wrapped together, then put in an "autoclave" that sterilized them further to be used in surgeries.

From there, my mind was made up, I would be in the medical field. Of course things change, and I got out of high school early, wanted to go to work, and married young. We had my son 2 years later, but by the time I was about 22, I knew that is not what I wanted for my life. I went on to divorce my 1st husband, and then was a single Mom, with bills to pay, and went to work at a bank in Dallas. Still I was restless because I was not doing what I felt was my calling, my heart's work, and what I was supposed to be doing in my time here. I left the bank, remarried a couple of years later, got some college under my belt, and went to work in a hospital, but in the business office.

Those 6 years there made me know even more that I wanted to find a way to be in the medical field, more hands on, and not behind a desk collecting money from sick people.
Yet, again, even after having an offer from the hospital for them to fully pay for me to go to college and get my LVN degree, at that time, I had two younger kids in school, and was unable to go to school full time, and support my family also. Oddly, enough, I went ahead and took the "entrance exam" to get into the nursing program and passed it as #1! That made it even more difficult for me to pass up the opportunity. I not only had the drive, I had the offer to pay for my classes, then work for that hospital for a year to "pay back" a portion of my college. Then I could have went any direction I pleased. Yet, family came first, and with a heavy heart I declined that opportunity.

I was friends with a woman that was the head of nursing there, and there were days she was almost unable to walk. Her feet would hurt so badly, she could barely stand on them. I found out she had Rheumatoid Arthritis. That and another young woman that worked in the hospital pharmacy, had a type of "stomach issue" autoimmune in nature, that there was little known about, much less on how to treat it, and give her the life back she wanted.

All those years I continued to fill notebook after notebook of my writing and poetry. That was the one "steady" in my life, my writing. I did go to college, and took accounting classes and business classes, and almost had my degree in business. I was struck with Migraines, that were horrific. Over the years they would make me so ill, I would miss work for days at a time. I never "hid" that I had the headaches, but I could not predict when and how long they would come on and last. In fact, I lost several jobs either having to resign jobs, due to missing so much work because of the headaches, and other health issues, including needing surgery on several joints. I had painful problems with my knees, shoulders, hands, and elbows. Again, missing work for surgeries on painful joints, in my 30's that the doctors could not really explain.

I had went to a "pain specialist" long before they were really heard about, mainly to see if he could help the migraines. I had injections into the occiptal nerves in my neck, was hospitalized, had every test available, yet no doctor could put the pieces together as to what was "wrong" with me.

At 40 years old I was an avid exerciser, daily, I ate only healthy foods, watched every pound of my weight, and did everything "right" for my health. Yet on January 8th 2001, I suffered a heart attack.

After that, doctors began "speculating" what was medically wrong, and a huge amount of "stress" was a portion of it. My 2nd marriage although lasted 15 years, put me in a horrific "trauma" day after day, and that stress my doctors seemed to feel was what partially caused my MI at such an early age.

I began to have tests, be able to see better and more advanced physicians, and around the age of 45 I had a young PCP, who finally put the pieces together, along with the proper blood work and finally was open minded enough, to "listen" to me. He found out that I had some "type of autoimmune issue"(s). He sent me directly to a Rheumatologist, who ran more tests, and determined I had MCTD, or possibly Lupus, RA, Sjogrens' & Raynauds.

I had already discovered a whole new era in "writing". Online communities, of people such as I, and that my "writing" could really be helpful through these communities, through my own "blogging" (at the time I really did not even understand what a blog was) and that even though I never was able to go into the medical field to help people on a plane such as a nurse, doctor, or in research. I COULD bring my story as well as a great deal of information to so many others such as myself, that were severely in need of answers, of the questions to ask their doctors, of information on new medications, and through other telling them their own stories.

Thus, my writing and medical "knowledge" finally came together about 10 years ago, and I began to "help" others through my own frustrations and information about the diseases they had been told they had, but were frightened to even ask their physicians for more information.

So, out of my own Chronic Pain, many surgeries, dealing with several autoimmune illnesses, tests and knowledge, was born my own blog, and my own way of helping those who are in such need for someone "listening" and truly understanding their problems.

Thursday, September 8, 2016

FINALLY after MANY YEARS THEY SAY THE WEATHER EFFECTS PAIN, JOINTS, MUSCLES, BONES AND MORE.... CHRONIC PAIN!


This is NO NEW NEWS to me - I've told doctors since I was about 17 years old, with the start of migraines THE WEATHER HAD LOTS TO DO WITH THEM, and as the years went by and I developed so many issues with Lupus, RA, joints needing surgeries and anything joint, bone related, the weather DOES PLAY A PART in the pain, swelling and inflammation.






 FINALLY THEY ADMIT WEATHER DOES EFFECT JOINT, MUSCLE, BONE, AND OTHER TYPES OF CHRONIC PAIN!


http://www.bbc.com/news/science-environment-37301579


Friday, September 2, 2016

MIGRAINES - Clinical Trials and My Own Story...








Have #migraine headaches? Research studies enrolling now. No-cost study medication. Click here to see if you qualify. http://curec.lk/23HAhdL







 I've not had the time to tell about Migraines and my pesonal atory, but they are one of the MAIN REASONS that the Disability Judge granted me my full disability. They literally took over my life from the time I was 17 years old... and although for some reason they somewhat got "better", then with the Lupus, RA, and so forth I have "worse" headaches and they are different, but I feel for ANYONE suffering from these. I had to either resign, or was basically fired from at least 5 jobs over the years due to Migraines.



Tuesday, June 7, 2016

Mom and Sharing a bit more.....

I was not sure about posting this here but it seems like the very best spot to let those who want to know about my Mom, Henrietta Steele. Of course this is Pam Steele, from the Class of 78, gosh a long time ago, LOL.... and many knew my Dad Minnis, that worked for Ennis Business Forms for 45 years, started at 16, and walked from Byrd/Rankin back and forth until he finally got his Dad's car (Model A) I think... anyway, back then it was still Ennis Tag. My Mom was having signs of "dementia" for a bit, but she is to be 81 in August, so "memory issues" are a part of that anyway. Yet, just this past January, she was still able to do much of her "daily stuff", cooking, cleaning, still in that little tiny house on Anthony Dr. - where I was raised, etc. 
But, within weeks, things went from "okay" to wait a minute something is very wrong. She was not able to "recall" how to put her car in drive, not able to turn on her oven, could not recall how to use the Microwave, and from there she quickly was stricken with what I feel is "Lewey Bodies" Dementia, it moves extremely fast, and her symptoms to be are definitely what I would say "fits".... both my Grandparents Rosie and Joe Svehlak, her parents, had Alzhemeir's/Dementia. So, it is not a huge shock, BUT theirs did not take them down this quickly. Which there could be some "mini TIA's" happening, mini strokes, and we would really not know that for the most part. 
Anyway, rather than drag this out, I know some of you have become "friends" on Facebook with me, and I am of course a friend on our Class of 78 Facebook page, so I also enjoy keeping up with everyone plus remembering "Ennis" and things we had and did as kids here, that are now just memories. Anyone, that may know of someone who would have known Dad and Mom, or myself, as I said I felt this maybe this best way to "inform" the few people we know and most of our relatives have already passed away.I am in Ennis and have been back almost 11 years from Seattle. I know a few did not even realize that. I will of course have something posted on the Keever's website once we reach that place, etc. But, mainly I wanted to get the word out, because this happened so quickly, and we don't have much family etc left, so I felt this would help to get the word out to those who wanted to know..... Pam Ravishing Rhiannon Steele
 
 
The last pic of the 3 of us in 2004, before my Dad passed away...
 

Thursday, June 2, 2016

Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....

You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"

Wednesday, June 1, 2016

New Clnical Trial for Cluster Migraines sponsored by Cure Click

Dread your next cluster headache attack?

Right now, a local clinical research study is testing an investigational medication to see if it may help people who suffer from cluster headache (Investigational means the medication isn’t approved for routine clinical use).

If you qualify for this research study, you may have the opportunity to try this investigational medication. You may also receive study-related care at no cost, and compensation may be provided.

Wednesday, May 11, 2016

Brand New Clnical Trial OUT for MIGRAINES! - sponored by "Cure Click"




I have SO BEEN HERE for years and years of most of my younger adult life! I wished back then we had any type of answer or treatment for these horrid headaches. I recall telling my doctors the "weather" effected them, as well as my other joint issues etc... and they would say I was nuts... and NOW it is PROVEN THAT WEATHER AND OUR BAROMETRIC pressure DOES HAVE AN EFFECT ON MANY CHRONIC ILLNESSES, ESPECIALLY INVOLVING JOINTS, AND THESE TYPES OF HEADACHES....

So, I am PLEASED to present the latest clinical Trial by Cure Click sponsors and HOPE ALL do SEE a dramatic change!

Tuesday, August 25, 2015

September 2015 "National Pain Awareness Month" right around the corner and "Beautify in Blue Campaign" by the US Pain Foundation

I will go ahead and mention that I got our Mayor here in my Hometown to sign a "Proclamation" for September 2015 being National Pain Awareness Month! The US Pain Foundation is "hosting" a "Beautify in Blue" Campaign to bring awareness into our towns and cities. Ennis has allowed me to be a part of this event for September. I am not sure all of what my package will be from the Foundation, but I will have signs, posters, ribbons and so forth to put up around town. So, I am thrilled to be able to do something and give our town a look at just how chronic pain can "control" your life, and just how many right here in town suffer from all types of illnesses that also have chronic pain issues in tandem. Even one of the gentleman that does okay these types of projects told me he suffers from Migraines. It is amazing when you speak out about some of the chronic illnesses and pain here in your own "backyard" so to speak, how many others are also suffering too. I have two cousins, both suffering from RA, even before I was diagnosed. In fact my 1st cousin Mike, who just lost his Mom to stomach cancer (my Mom's sister and my Aunt of course) just had hip replacement, this is his 2nd replacement - (two weeks ago), he had his other hip done, about the time I was having one of my knee replacements done probably in 2008 or so. I have had "so many" and in 2007. I believe I went through about 7 surgeries or more on joints, so the dates sometimes become a blur. But, I know others that I run into in the market of Wally World and so on, that also have issues, some of them like my neighbors across the street, the Mom, and both sisters all have diabetes. I believe their Dad also suffered from it. In fact the youngest sister, and she was maybe in her 40's passed away about a year ago after fighting diabetes. She had already been on dialysis. The Mom has also been on dialysis now for several years. She "shattered" a knee not too long ago and spent weeks in the hospital and in rehab, but due to her illness, and the dialysis and age, they would not do surgery on the knee. I don't think the doctors feel she could make it through the surgery. She is sometimes so weak, they have a difficult time just getting her to dialysis. It is just sad to see what the entire family is enduring. The son, is just an incredible man. I don't think he has been "plagued" with diabetes yet. But, he also has two strikes against him on both sides of the family. You don't see it as much in men, especially the type they have, but with the family history, he certainly could succumb to it.

After all of the advocacy I do for Autoimmune Illnesses, Lupus, RA, Sjogren's, and also Arthritis the AI kind, as well as osteoarthritis, along with Cancer and Heart Disease, sometimes the issues of Chronic Pain kind of take a "back seat" in my activist roles. 

So, since Chronic Pain, which of course I know all too well, from my own personal and up close experience with it now for many years, well before the Autoimmune Issues were diagnosed, I suffered from such horrific Migraines that I was sick with them sometimes several times a month, for many years throughout the time I was about 17 years old, until about the age of 45 or so. 

They became so bad at times, that I had to resign jobs, that I had been in for years at a time. It became such a burden, yet back then there were not many answers as far as migraines went. They had very few medications, most of them of course narcotic pain medication, and even back then, the doctors were so leery about giving them. But, if I did not have my prescriptions, it never failed I wound up in the Emergency Room so many times, and even that for one got OLD very quickly, and for TWO, of course the ER doctors began to think of course I was after the "drugs" rather than having Migraines so bad. 

So, oddly enough, once the diagnosis of the autoimmune illnesses were made, and I finally found after years and years of suffering by then all types of chronic pain issues, an awesome Pain Management doctor, who has been taking care of me now for at least 8 years maybe more... and he even put in my internal pain pump in 2010. 

My migraines seemed to have calmed down, even before the pain pump. and began to change. I began to have "Lupus Migraines"... and an injection of corticosteroids, along with a step down pack for 7 to 14 days, was the only thing that helped those.


But, my chronic pain became more complicated due to all of the severe joint issues, of which some I have had surgery and others still bother me with chronic pain, which is a part of many AI illnesses.

So, I felt compelled to now do some advocacy work in the realms of Chronic Pain.

Thus my reason for helping out with National Pain Awareness Month, and the Beautify in Blue Campaign. I hope to be able to help educate others about Chronic Pain, and just how badly it can also effect your quality of life. 

Tuesday, March 10, 2015

Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....


Tuesday, February 24, 2015

Life In A "Goldie Locks" Kind of Cinderella Fashion - Then realizing what was back then was a "view" from a childs eyes...

I've done quite a bit of posting, writing, blogging, and more posting today. More than I've done in quite a while for a change. It just seemed like since the weather is making its turn here in my neck of the woods for what sounds like worse for wear, the dreary, rainy, cloudy, soon to be falling sleet and freezing rain shall cometh as the day gets into the late afternoon and evening.

I've put some things up here, on my blog, along with some posts on Facebook, several "Tweets", and some Pinterest postings along with the entire thing also have kind of brightened up my pages on those places that were beginning to feel more staggered, than normal. Of course I go through sometimes even a week or possible almost two weeks, that living daily life, tends to be erratic, errand filled, running hereth, thereth, and yonder... and feeling too worn for wear, when it comes to being online, or even on the computer to write in my book. It comes with the territory of having some of the chronic illnesses I live with. They at times seems to inhabit more of my body, mind and spirit, than just "my own self".

That may sound a bit crazy, and with the amount of issues lately with brain fog, pain, forgetfulness, and sometimes feeling just beyond the point of lazy thus I see at a breaths space, that without my watchful eye, Lupus, RA, Sjogren's, Raynaud's and the rest can slip up behind you when you least expect it and take over your body, heart, and mind much like some alien force that presented itself from a foreign planet.

As I was taking a shower earlier this afternoon, and thinking about my life, it dawned on me how things are so very different now. When I say that I mean more of my own perspective about my life in a very personal sense. When I was growing up in the 60's and 70's... little did I know how much influence my younger years would have on me, when I was 50 and over.

Back then I never gave thought to "money". Of course I knew my family were not "rich" or even very affluent. I always lived on the "other side of town". The North part of my hometown is where the larger homes were built, mostly brick, and were a great deal much more expensive than the small little 2 bedroom, 1 bath room wooden home I lived in. In fact, I was born, raised there, and my Mom after all these years still resides in that exact house. So, it is truly "home" for me.

Mom was about 25 years old when I was born. I get the impression she never really "dated" all that much before her and Dad met. He happened to be almost 13 years OLDER than her. I guess back then, age like that was not all that huge of a factor. Most women in the 50's and 60's were home makers. They took care of the kids, house, cleaning, cooking and so forth. The Dads, Husbands were the "bread winners". They went out into the world and make a living for the family. We always had two vehicles. We usually had a "good" used car for Mom to drive me to school, to the market and errands. Or if we went on vacation we usually went in the car. Dad just about always had a truck. He began with a Chevrolet and the last one Mom traded in after he passed away was also a Chevrolet. Dad bought a brand new pickup about every 5 to 7 years. Mom had worked until I started school. When I began 1st grade she stayed home and Dad as I said was the provider. Dad and Mom were both born and somewhat remember the very "harsh" times of the Depression. Dad of course, much more than Mom. He was born in 1923. He remembered outhouses, no indoor plumbing, wells, hoeing cotton, having a farm, garden, chickens, cows you milked, flour in huge cotton sacks (Mom remembers that also. Her Mom made them underwear out of the flour sack material)!

As the years went by, of course my entire "adult" life was somewhat different than my parents. I worked almost the entire time, from the day I graduated early from High School, until the day I resigned my last job in Seattle due to health issues, I always worked. If I had relied on money coming in from either of my first two husbands, I would have never financially survived. So, things that my Mom never taught me much of, working outside the home, clothes, makeup, and all of the "girlie-girl" things... having your nails done, having your hair cut differently, even having a bit larger home, a new car, 2 kids, rather than like myself an only child, and then allowing my kids to kind of "learn their own way" around the world. I taught them how to take care of themselves. I wanted my daughter to be able to be "her own woman". Never did I want her to have to rely on some guy to take care of her. I never wanted to feel she had to "stay" in an abusive relationship, or put up with someone not treating her like a woman should be treated, due to thinking she "had to" stay. Of course I wanted both of my kids to learn how to stand up on their own two feet. But, all the time I worked and was out of the house, I also needed them to be responsible enough to come home after school (when they were old enough), do their homework and chores, and be there when I came home from work, college or both.

My Dad never wanted me to "play in the band", or try out for any type of extra things in school. He was so strict, he never allowed me to go to football games like the other kids did on Friday night. And by the time he finally DID allow me to do a few things, he would either have to drive me there, pick me up, and was just so very overprotective of me. How I ever learned anything as far as taking care of myself... was either through an innate nature I was born with, or because I had the dearest next door neighbor who took me under her wing, and taught me so much, from crocheting to being a candy striper at the hospital...  all of the things I learned were from her, or from my own trial and error.

I guess I thought life was kind of the way Mom and Dad lived it. He came home from work for dinner (he worked nights for the most part when I was a teenager), and unless he "okayed" me going to my cousins house for the weekend, or her coming over, I was alone with no siblings anywhere near close to my age. I have a half-brother who is 18 years or more older than me. My Dad was 37 when I was born, and my Mom 25 years old. So, I guess they decided that after Mom had a couple of miscarriages after me, that having one child was in their cards.

As I had said in the beginning of this, being "affluent" or having money was something as children we don't think much about. Or back then all of that type of thing was not talked about around me. I raised my kids so much differently. They knew the "value of a dollar" at an early age. I wanted them to be ready when the time came to face the world head on. Not like myself, who was hit right in the face by the time I was 19, had my son, and was paying all the bills myself.

I don't resent that my parents did or did not do things a bit differently. But, I do often wish, they would have given me "eyes" and a "mind" earlier in life to accept so many of the things that life hands us, and if we don't have the understanding, we are not able to deal with it so well.

Dad hated doctors, and hated medications. He just refused with the exception of when he was extremely ill, to see his doctors, and just would not take the medications they gave him. He thought it was all a bunch of bull, and any medication you got on was almost like a sign of weakness. So, when I began to have severe migraines at 17, little did I know just how horrid the next 15 to 20 years of my life would be. From doctor to doctor, from time lost from work, medications that did not work, and Dad never really suffered a "headache" of any kind. So, he could not "get" what a "migraine" was, and why I needed medications for them. He would get almost mad if he knew I was on medication. His Mom back when he was very young, had been ill probably with cancer back then. The only thing they could do in those years was keep someone comfortable, and that usually meant morphine. I those times no one knew that "morphine" was habit forming etc. They knew it helped with pain relief for bad pain, and the doctors gave it out to those that were in bad pain such as cancer. Well, I guess probably my Dad watched his Mom go downhill, and then between the medication and the cancer she was not "lucid" at times. So, he thought that "any" medication could cause you to "lose your mind"... and he definitely did not believe in taking any type of pain medication. So, there were times I just could not even tell him about me being home sick with a severe headache, or the many times I was in the ER with one so bad they had to give me IV medications just to get rid of it.

Even back then, as young as I was, I had joint issues. It began with an accident playing baseball with some of my cousins, and I got used for "2nd base"... and the torn meniscus had to be repaired in that knee. I spent 7 days in the hospital in traction after that surgery at 15. By the time I was 21, I had a 2nd surgery on that knee, and even then I was showing signs of arthritis. Yet, the doctors just didn't put two and two together... to see there was probably much more going on that just a knee injury. After that I began to have various joint problems. Pain, stiffness, severe pain, freezing up, until I had a shoulder, an elbow operated on, and after that, I underwent several more scopes on both shoulders, knees, and then of course replacements of my knees and my right shoulder.

Life for me as a child was days of playing alone outside in the good months, with my dolls, my table and chairs, and as I said, not knowing what really was going on through those years. Even in my teens, I just knew I had an overly strict Dad, that never allowed me to "spread my wings"... he didn't even "encourage" me to go to college... yet I did go and finally got my Associates Degree after years of going at night after work, to get my degree. I am told I am an incredible oil painter, and loved taking those lessons. I took piano for years, and loved that. Even the vacations that my parents took me on, they were nice, and I am glad they took me, but after I was grown I got to go snow skiing, go to Vegas, went to concerts, to Hot Springs, and did many things that my parents never would have tried or done.

We always want to love and "shelter" our kids from the harms of this world. But, if we "shelter them" too much, then they are not prepared for what the world holds later... and all of us know now it just gets worse with each passing year.

My Dad never understood cable TV or Dish, he never understood a cordless phone, or a CD player or DVD player. He certainly did not get a cell phone, computer, or much of anything that was "electronic" in nature at the time all of the digital, cell, and those types of things came out.

I will end this for now, on a note, that I am not upset, nor do I blame my Dad or Mom for where I feel I may have not gotten as far in life as I wanted, when it comes to things I wanted to do, places I wanted to go... and thank goodness I didn't raise my two like that. They "get" the world... but I just hope that people give their kids what they need, that will help them grow into caring, loving, and knowledgeable adults, that can "conquer" anything, and not be scared to do things in life. I felt kind of "shut off" from the real world back then...


Tuesday, January 14, 2014

"Unwell" ... and if you stay long enough, you shall find and see a very different side of me...




....Right Now I know I am a bit IMPAIRED....


cont. from FB post.


...    for me it is worth mentioning. I became a HUGE" Matchbox 20 “  fan when I was living in Seattle. I had bought their first two CD’s(and yes then CD’s were still a huge market) LOL! Both of them really had some songs on their that “not only touched me back then” BUT it was as if every word they had written, sang, and played music to spoke to this very inner core of my being. I recall walking on Alki (West Seattle looking over the Sound back to the City) Beach, and I played those two CD’s and could walk for hours. There is something un EVERY song, that Rod Thomas sings that just expresses (even now and especially back then) in which sounded like many of my poems and short prose. My live at that time was such an incredibly  wondrous, almost esoteric tempo to it, thus something about most of those lyrics, just reached out and “grabbed” me. Anyone that is a Matchbox Twenty fan, knows the song, “Unwell”. It seemed to be the “theme” of my life at that time! Now, I’m not saying “illness” as far as being physically sick, I really was not “mentally” or “emotionally” challenged either. Yet, for some of those looking outside to within me, may have thought to themselves, she seems a little “Unwell”! The fact was those years in Seattle, especially the last three, were the years that taught me SO MUCH in regards to my strength in all ways, my courage to venture out, to a HUGE city, thousands of miles from any family, or anyone I really “knew” that well; in more ways than I can count, I felt each day, I was “Less” “UNWELL”. Not only all of the above, but I rented my own apartment all by myself (may sound silly to some but for me it was a first; I bought my “own” first “very good” used Honda & knew without any help I could pay my car payment, living expenses, and so on all by myself. I “gained” an independence in my those years more than any other in a lifetime! I interviewed all through the downtown part of the city (LOL! anyone who knows Seattle, knows it has some HUGE hills to go up and down in with very busy city traffic), and in fact had taken two previous jobs I had loved being an apartment manager at both! This new one was at a banking institute and at that time it was MEGA busy due to ALL the interest rates, and the “Fannie May” and all of that boon at that time. I got hired on to help be the assistant to the lady that did all of the last paperwork for home loans. I had to know everything from what a Title Policy needed and looked for, the note, the deed of trust, insurance, flood insurance, all of the truth in lending information….. I was responsible for making sure we had ALL of that paperwork and it was correct before they could “close” on the home loan. We also “sold” off “blocks” of them. Of course that was to have more funds that would ultimately turn into more blocks of loans that were sold off also. You get the picture. My salary was MORE money that I had ever made at any job in my life! Now even though was was a fact, I still had those rent, car and living expenses to think about. But I had figured all of that out and knew I would be fine. :) I got insurance coverage, I kind of worked my “own” hours. I was a morning person. So, I would come in at 7 am, way before any of the rest of them showed up. My direct boss, bless her heart had a young son, she was single, or about to be, and she usually showed up about 9:45 or so. LOL!! That mattered not, because as soon as 8 hours rolled around, I could leave. So, I went home early most days also. )BY THE WAY this is PRE AUTOIMMUNE ILLNESSES DIAGNOSIS) days… I did suffer from severe migraines, did all my life, and they put me down at least 2 days when I had one. Anyway, dream life for me… not rich by no means at all. But, I saved a bit here and there and would buy a new outfit, or treat myself to something like a little TV I bought for my apartment back then, etc. Anyway, I am sure many people that “knew” me then, often wondered if I didn’t have a “screw or two loose”, or was missing a few cards from the deck, a brick or two out of the wall etc… because I was “eccentric”. I “danced” life to my own tunes playing in my head. I wrote more poetry and short prose there than ever. I didn’t have “friends” per se, other than some online that we had known one another for a long time. I dressed as I wanted (at that time I only weighed like 118 pounds and had a waistline that was tiny like Dolly Parton’s… BUT not the “TOP” of the hour glass like she did” HAHAHA!!… I loved clothes and shoes… yet with it just me, and my bills, I bargain hunted on the weekends at the Mall nearby, and bought one thing etc… as I could afford it. Yet, even though I felt “business” dressed, and I was… I honestly believe the supervisor OVER my own supervisor was quite jealous! Never did figure that one out… the ONLY thing I DID figure out is that she was a “backstabbing, manipulating, ladder climbing, crush the persons under you, and a plain “witch” of a boss and a woman. Okay, now to pull all of this “insanity” together… Hey good word for this “insanity” …….LOL!!! That song by Rob Thomas” “ Unwell” was the theme of my life… I even would quote some of it at times when it was appropriate, “Oh, no, I not crazy, I’m just a little “Unwell”… and if you stay you will see a different side of me”. I still “dance to my own “weird” tune inside my head”…. I am NOT one to “go along” with the crowds, and I REFUSE to HURT< BACKSTAB, MANIPULATE …. and all of those other “nasty words” to ANYONE! I am NOT a Ladder climber! And if I did NOT get the “promotion” or raise for some reason, as far as I was concerned, then I needed to do a “better” job… and those things like more money, a further up position, more responsibility… all would come in good time. I remain the same. I will “take up” for the guy or gal being stomped on, I think that is why I just about HATE politics, I am NOT a “used car sale man” (even hough I did do that for a few months in my twenties), … you get the picture… if MY OWN SKILLS, personality, aura, …. does not put me in that place, then I need to “turn my sails” a different direction and get with the winds of change that shall make my sail into my own smooth river happen. There are so many days, that I say just this… I’m not Crazy, I’m just a little Unwell, and if you will stay long enough, you shall see a different side of me…. and it is very true… even here in Facebook, a few of those who have gotten to really “know” ME, not just the illnesses me, etc… but this complex, but simple, conundrum, and dichotomy that makes up the wholeness that I am… of course the “autoimmune illnesses” and age have “changed” me in many ways… yet that creative, tend to flow on a different rivers path “me” is still very much alive and “Well”!!!!  “She” does not show up as much as far as to others outside my very personal life very much, yet, if you “stay” a while… you shall see that “different side” of me… … And to “honor” that song… Here are the lyrics… and they just tell a story that was a piece of my lifetime….

 "UnWell" 

           Lyrics  written by Rob Thomas off of Matchbox Twenty 
"More Than You Think You Are CD"


All day staring at the ceiling


Making friends with shadows on my wall

All night hearing voices telling me

That I should get some sleep

Because tomorrow might be good for something



Hold on

Feeling like Im headed for a breakdown

And I don't know why



[chorus]



But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me




Im talking to myself in public

Dodging glances on the train

And I know, I know they've all been talking about me

I can hear them whisper

And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow Ive lost my mind




[chorus]




But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be




Ive been talking in my sleep

Pretty soon they'll come to get me

Yeah, they're taking me away




[chorus]




But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be




Yeah, how I used to be

How I used to be

Well, Im just a little unwell

How I used to be

How I used to be
Im just a little unwell

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