Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

Saturday, February 16, 2019

Saturday's Copy of My News Paper! "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"

"Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"

All aspects of autoimmune/chronic pain illnesses, fighting to survive & grow past them, as I now stand alone to disallow these to get me down.

The latest in health news from pain, RA, Lupus, Heart disease, and all types of other Autoimmune Illnesses... along with other diseases, syndrome's and more. Sign UP on the link to get your copy online daily!

Monday, September 25, 2017

Crazy Weeks, Dealing with more Pain, the Hip Injections, and when you feel the "worst" that is when it all Hits you in the face, doctors, CVS,(will say I am proud of the government, insurance and more...



I don't know how everyone else feels about this ordeal over "CVS" "limiting" opioid medications like they are, BUT WHAT NEXT!???

Limit out blood pressure medications, and Lord knows what??? It is a sad day when our own physicians can get "trumped" HAHA yeah I said "TRUMPED" by the darned pharmacies! I THINK it stinks, in so many ways....

After making the statement above that really did not have all that much to do with the "President" other than it came almost to be a "pun" play on words, I had I guess a "follower" of the President's "confront" me on Facebook. In the first place, I said NOTHING about him having a thing to do with CVS and their "new" tactics as far as "reducing" greatly the amount of opiates for 'acute" pain they will sell now.

Needless to say she made the comment "Well NO ONE should EVER be given OPIATES for PAIN! This is a woman that is a "friend" as far as on Facebook, BUT she never "says" a word to me, never. Yet, I guess due to me making the pun on words about "Trumped" she decided to "attack" me on my own page.

First of all, posting your opinion is fine. I don't have a problem at all with that, But, she really didn't read what I posted in the first place, and in the 2nd, I found out she has FM, and she began to "object" to everything I said about "any type" of pain control.

Yes, I was getting extremely frustrated with this person who never says a thing, to begin to say things like, (I talked about a friend of mine who uses Kratom for pain" and I had never heard of it, until lately. I would not use it, but for some it works and I think that is great. Then lately I've been hearing about some people using the "Hemp Extract Oil" or "CBD" Oil that is completely legal, you can even buy it on Amazon or many other places that sell all types of aromatherapy items and so forth.

So, I also mentioned that, along with other items that either are "not prescription" opiates, or the things that maybe prescriptions but not opiates, yet there are many people with other health conditions that may not allow them to take "NSAIDS", Antidepressants, some epilepsy medications and so on.

Thus, you can't just put everyone under the "same umbrella" and say NO ONE SHOULD BE GIVEN OPIATES! Also, MANY of those that get medications like this either "acquire" them illegally or from a different county, OR they are using other "illegal" narcotics, such as heroin, and other drugs that are not legal.

I hold high regard for Senator John McCain and in fact just sent him a message telling him how much I appreciate that he stood up for all of us, and said this "Obamacare" replacement" insurance could ultimately bring so many of us closer to the poor house that we already are, OR cause us to lose our coverage all together as far as pre-exsisting conditions.

It's more than time for the American people to take a stance against what our own officials that we place in high honored spots in our government that do NOT listen to the very people they represent. But, it needs to be in a "positive" realm, not causing and reeking havoc, or breaking things, ruining other people's property, and the likes.

I realize that not all of us have the money, or time, to make a trip to Washington DC, but we can get in contact with most of our Congressional Leaders. They have email, twitter, Facebook, websites where you can send a message, mail a letter, send a video, do something to stand up and LET them KNOW we will not stand for the thoughtless ways they treat their constituents.

Sunday, April 16, 2017

May you Find Blessings, Peace, Harmony, Love and a Wondrous Easter Day and in the Days Ahead....


May You Be Blessed with Hope and Love Today, Easter Day and in the Days Ahead....

Happy Easter to All! Mine started out insane, I didn't go to bed until late, just because I have been NOT sleeping for several reasons over the past 8 weeks or so. Either I have terrible night terrors, that wake me up, and I am crying, then I get "stopped up" and can't breathe, and by the time I get settled, then I am not sleepy... or I just wind up turning the TV back on, and then I can sleep at times. I keep waking up at 2am, 3am, 4am, until I am so sick of the hourly issue, that I give up, get coffee, and sit up watching something on Netflix until I feel okay enough to do things. 

Also, my pain level is off the charts for the most part. My neck is so bad, that i am in constant pain with either a horrid headache, or my neck so stiff I can't turn it, and then I get more tense, and my entire body hurts.., this humid weather is not helping... although not all that "hot" the humidity has just been off the charts this past several weeks. I get up and every morning even if it has not rained everything is so "wet" grass and all, it it is muggy, sticky and too wet to even take Peanut out until it dries out later in the afternoon... plus I've had so many "catch up doctor visits, then Echocardiogram last week, follow ups on my hip, which is really been sore, but between the weather stuff, my RA is in a severe flare, and so is my Lupus, so that contributes to the pain, and it just all continues to circle around and around, causing me to not sleep, and then by early afternoon, I am so exhausted, I've just been up way too many hours, but I don't want to try to go to sleep at 8 or 9 pm, then the same cycle starts over again.

 Also, I've had so many things as far as paper work, trying to decide if I even want to "stay" in my house. I've just about decided to sell it. Right now it is a "seller's market" and like my investment lady and I talked about last week, I could sell quick more than likely, and do it without even a Realtor, and save that money and hassle. I've just gotten to where between ALL of the outside stuff, mowing, fire ants, other ants, bugs, and so forth, the weeds are nuts, the wasps and such are already trying to build nests, and I am constantly fighting them so i don't get a nest like last year, where i don't "see it" and they sting me, because I don't find the nest... that is what happened last year... they built 
in my gate to my car port, and then I found a huge nest from last year close to my front porch a couple of weeks ago... i could not see it last year, so I was constantly having to watch to keep them from getting in the house... so I've knocked down the old nests, been spraying and knocking down new ones as they start them, but I have dead trees, the "weeds" in the back look more like "trees" than weeds... so trying to weed eat, mow, cut, chop, saw, and then the inside NEEDS so much work, I still don't have the floors finished in the bathroom, kitchen and now the kitchen and bath need to be either finished or repainted... the outside still needs painting and it is terrible... plus it needs a roof... 

I know that is coming soon.,.. and there is just so much to keep up with that costs a fortune, or is beginning to be things that my "body" does not like me doing... like sawing, and even using the light weed eater and although all is cordless and battery operated still with all of my joint issues, pain, and now the Lupus and RA getting worse, I pay a price for 3 or 4 days after i work on things.. then I suffer like today, I hurt from head to toe... I do know having hold of that pole saw really helped my arms... i actually have "muscles" built up from the weed eating, mowing, sawing, cleaning and so forth... rather than all droopy, although the skin still is some, I finally have built back up some muscles in my arms and legs..,. if someone would have told me just 10 or 12 years ago, I would not be able to do even little things, trying to use a can opener, button buttons, zippers, and all kinds of things using my wrists, hands and fingers, I would have thought they were nuts... not true... my hands, fingers, wrists, and elbows are always stiff, not able to be used to open anything, and trying to do just about anything with them, on some days is almost impossible. Even sitting here to type, hurts my hands, wrists, fingers, but my neck, shoulders, lower back, all of me takes a "beating" from even sitting for very long.., it sucks and I KNOW I AM NOT THE ONLY ONE, but I think after doing some thinking, and I found out i probably can do some investment stuff where I would have enough money from one or two of them to pay rent monthly for an apartment, and avoid all of the money I am pouring into this older home, that truly needs much much more work and funds, than I want to put into it.

I never thought I would feel that way, but after living in Seattle for 5 years, in an apartment where NONE of all of those things like upkeep, yard, problems, were anything i had to worry about, honestly I LOVED BEING FREE... I love having a yard, flowers, trees, but everything that goes along with them is getting to be more of a burden than "fun" like it used to be... I "hope" that between myself and my doctors nurse, who can be a jerk honestly, that we have my insurance company now where i DO NOT HAVE TO HAVE A CT ETC. before my neck surgery! They told her last week I needed an "MRI" before they would approve it, well i cannot HAVE AN MRI DUE TO MY PAIN PUMP, and a CT scan is a waste of time and money - I have TWO LETTERS, ONE FROM JUST LAST DECEMBER, just before I broke my hip stating the INSURANCE APPROVED MY NECK SURGERY.... I fell, and we had to postpone due to the hip fractures... but the neck of course is WORSE, AND NO CT SCAN, will show different... the X-rays in themselves show the damage and how much worse it is than just 6 months ago or so.... anyway, I am going to stay on the nurses butt this next week, so she will do her part. I DID MINE FRIDAY! I got all of the information from the insurance company, faxed her the letter, and what they told me on the phone, and if she will not drag her feet, we can probably get it set up and done the last week of the month. I decided to wait and did not go to the Casino today.., the weather here and up that way is "wishy washy" today and tomorrow... and besides, 

I've had so much to do here, before surgery, and I feel like I've been beaten, I decided to "change" the reservation until next Sunday,,, I hope to go then and if not then wait until I am over the surgery in 5 or 6 weeks then I can go to the Casino then. I did get my ham baked, I made those home made biscuits with the Sprite Zero that are so good, got some fresh fruit, I have sweet potatoes etc if I wanted to fix them, and I have a half a cake that I baked earlier this week, etc.,,, so I don't think I will do much other cooking, I did bake some very "healthy" oatmeal cookies this morning, without all of the fat, sugars, carbs and so on in them... I ground my own oat flour, used Splenda, and the Ranger cookies of course have Oatmeal and Corn flakes in them... so they don't even have any white flour, and I used "County Crock" and not any type of oil or "bad" butter sat fats etc... they turned out really good and are not too sweet, and don't have a bunch of empty calories and "processed mess" in them, I re-potted a few of my plants that needed it, and right now my arms, hands and entire body hurt like hell. I think I am headed to the sofa for awhile to rest... I HAVE TO HAVE A SHOWER in a bit, but did not want to take that until I am finished with all of the "chores" stuff around 1st.... Hope everyone has a very blessed Easter and in the days ahead my prayers are that we find hope, peace, and "good things"... the way our world is, right now honestly it is frightening.... but "worrying" won't fix it, so rather than worry, I am just doing my own stuff, and enjoying my days and moments as they come.... Happy Easter again to all..

Saturday, October 17, 2015

More News You can use - an article about what a patient with Lupus wished other people without it Understood and more...

I began this "daily paper" and it is based on the information that I would like to share with others. Health, Technology, sometimes specific information about cancer,Lupus, RA and other illnesses... but usually a couple of times a day I refresh it so the latest news comes up when someone reads it! I've not said much about it yet, since I was trying to get a feel for if it would be something worth my time... and now after several weeks, I do feel it brings forth some very interesting information that is specific and pertinent to what I want to share with my family friends, and readers, and of course now my blog people! So, there has been an add for it on the right side of my blog for awhile, and I decided to post a blog post about it now, so others can see what it is like, and see if some of the information is helpful to you! The link to the latest addition is above! Please tweet, or share it if you feel you would like to pass it on, and if you want please comment so I know how you all feel about the articles.... more to come soon Rhia

IF my typing is "off" I broke a pinkie nail off below the quick yesterday evening closing my back fence! So, I am trying to catch any thing I misspell :)   )!headlines

Thursday, April 30, 2015

WEGO Writer's Challenge! "You have made it!!!! 30 days and 30 posts! #HAWMC

Wow! What a fast month this has been. I realize I post on my blog daily most everyday of my life. Unless I am sick, having surgery, or out with myself or family at the doctor's I keep my blog very current. Often times more than once or twice in a day. Depending on what I am finding online, there maybe several posts in a days time.

This has been a wonderful and thrilling April 2015! thank you WEGO Health for the chance to be in this "writer's challenge" and I hope to be able to do it "annually" for as long as you offer it. The prompts were fantastic and it really gave me a much broader sense of what to write about. Sometimes as an author and writer, and blogger, I feel I get "stuck" saying the same things over and over again.

So, having another party give me the "prompts" helped to open my mind and heart up to write about some things I may not have thought about. So, I commend all of you for the hard work, for the "tweets" for all of the other writers, bloggers, and authors out there that I have gotten to know over this past month. That is another awesome thing about the Writer's Challenge. I've been able to "meet" new people, and see what they say about some of their own battles with all types of health problems. I thoroughly have enjoyed all of what I've read and I have learned so much from each of you. That in itself is such a wonderful blessing.

Oddly enough, now that we have become an "online" world, where "everything" can be known within a few short clicks on the keyboard, makes our world seem to be a much smaller place than it used to be. So, I may make friends with someone right here in the North Texas area, or maybe someone in Australia. I love being able to know people from other states, and countries. To see how their health care is, how far ahead some are from us, especially the UK, when it comes to Autoimmune Illnesses. They seem to be several steps above us, with new medications, research, clinical trials and more.

It is difficult to pick any one thing about the "prompts" or the entire Writer's Challenge that I could say I was not that crazy about. I felt that you did an incredible job of really making us dig deeper, and really think about different things when it comes to our own health issues.

I loved ALL of the prompts. Of course there were a few I liked more than others. I have to say the "acronym" was one of the biggest challenges. I liked it, but it was one that I guess may have been down on the scale of being a favorite. Yet, I learned things from it also, so it maybe a "less favorite" but I did partially enjoy the challenge.

The product review for me is somewhat a difficult one. I feel that I may not really understand exactly what you guys and gals were looking for. I tend to write and blog more about medications, research, new clinical trials, and so on. So, it took me awhile to decide whether the "favorite" products should be something more on the "medicinal" side, like prescriptions, or more like things we buy over and beyond the physicians, medications and so forth. For instance what I use on my mouth, corners of my mouth, my skin due to the Lupus, discolorations and so forth. Some I am sure have other types of devices that may use, such as a "zipper pull" or something to help get things off of tall shelves, and so forth. I am sure many have types of gels they use for sore muscles and so forth. So, I tend to go into the "mini implanted titanium rods" that hold my dentures on the bottom very tight. After losing all of my teeth within a year to Sjogren's, those have been lifesavers for me.

I would love to see even more types of "prompts" possibly on a more personal level. You already have given us quite a number of those that required us to open up more about our battles with health problems. But, I could see maybe a prompt next year that asks us to open up and tell some of the even more hardships, and things we go through that we may not write or speak about much.

Other than that, hats off to everyone! From all of the gang, of gal and guys at WEGO Health, to everyone who participated in the Writer's Challenge for this year, I commend all on their awesome posts, and what they said and chose to say that truly gave me new insight to myself and other illnesses, medications and how many of us are so "near" one another with our stories.

I loved many of the prompts. The "word cloud" was new to me and I really enjoyed it. The "Hindsight is 20/20" I truly liked. Stress Awareness, "telling someone "off" when they hurt your feelings", and the "travel" prompt was great also. It is difficult to pick one over the other because all of them were enjoyable. 

 I will be so excited to see what you "prompt" us with for next year! "If I am here, able, and still kicking, I look forward to participating in April 2016!!

I do hope and pray that by the time we do this again in 2016, my 3rd book will be completely written and published!!! By the way, that is another thing doing this has helped me with... material to use in my book. It also has given me some very good ideas about what to say, how to say it, and gotten me in the habit of the daily writing. I hope to take that even further, so I can finally finish my 3rd book (my own autobiographical journey) through the madness of chronic illness, autoimmune diseases, chronic pain, and all in between!

Again, I am just elated, yet a bit sad that it is over!


Again WEGO Health, I've had a blast with these this month! I appreciate ALL everyone does for us as patients! You guys and gals rock!  Rhia

Saturday, April 18, 2015

"A Tagline" for my patient experience! WEGO Health Wtiters Challengs April 17, 2015! #HAWMC

My very first thought is exactly what the "title" of my upcoming book is:

"It's Not ME! It's The Disease    "Stupid"!

Well, the first thought was to add the word for description   "Stupid" at the very end. Of course I surely want people to read my book, so the very last thing I would want to do is offend someone with the title.

Of course, everyone that totally "gets" the brain fog, the lethargic fatigue, the times when you are just too ill to put makeup on to go to the market, and all of the other "times" that come with these insidiously mostly invisible diseases.

This is due to the fact, that we have SO MANY that do NOT understand any type of what we call "invisible" illnesses. 

There are times that either "brain fog" causes me not to be able... to probably makes sense to some, yet I feel they just don't "get it!"

Sometimes I would love to wear something around my neck that says "I TRULY AM NOT WELL!! Just because I may "look okay" and run out to the store, yet at home I look like hell! And there are days I DO park in the handicapped sign zone, and sometimes I don't. Yet, I have those that "stare" at me, as soon as I am getting out of my car. They think if I am not on crutches, a walker, cane, or almost crawling into the market, then why would I have that sign?

When I am upset, often it is due to the pain, physical, mental and emotional. So, those that don't "know" me, probably due to NOT listening or seeing what they should, they are mad because I don't go out a certain time, or they wonder why I can't mow my yard.

There are all kinds of things that go into what we call "Invisible Illnesses and Pain". There are days I am in horrendous pain, yet something may have to get done, so yes I go out. Just because I am out, don't think I am "better".... with anyone you know, that has illnesses such as Lupus, Sjogren's, RA, MS, FM, Chronic other back disorders, migraines, chronic pain.... there are MANY of us that walk thru life, and MANY people out there that don't "see" it, yet even with the "invisible" there are symptoms and signs to watch out for.

I now have to make lists, to remember my lists, so I don't forget my list! One day I maybe hand washing my car, the next I maybe on the sofa unable to move. Or Worse, one moment I can "appear" well, and within hours be so severely ill, that I have to go to the Emergency Room.

So, if there was a "tag line" that I could wear, use, put it on my door, or in my car, would be   - "It's NOT ME!  It's the DISEASE!!   - maybe or maybe not with the "stupid"

Also, one other that truly resonates with me is::

  "Life's Too Short! Eat Dessert FIRST!



WEGO HEALTH Writer's Challenge for April 2015!  "Your Tagline"...

Wednesday, March 19, 2014

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

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

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

Friday, December 6, 2013

Sharing an Article from "Mind Body Green" about "10 Things about RA"

I am happy to share a great and informative Article written by Tami Caskey Brown, from the (IFAA) International Foundation for Autoimmune Arthritis! She is one huge asset to the advocacy to help the fight on RA and the other Autoimmune Arthritic Diseases! I happen to have the great privilege in getting to know Tami and also help her on the great work she puts in on the "Media Awareness Hotline" portion of IFAA's fight against these diseases. The link below is to her article on the "Mind Body Green" Website! Please check it out as well as their site!

"Mind Body Green" 10 things I wished Everyone knew About Rheumatoid Arthritis

You can see more about what is happening at IFAA and what the "Media Awareness Hotline" is all about. It helps to stop articles, papers, news and media items that contain "misleading" or inaccurate information on RA and the other AutoImmune Arthritis Diseases.

International Foundation For Autoimmune Arthritis Media Awareness Hotline

Friday, November 22, 2013

Technology - In Every Way & the Miraculous Way the Medical World Uses It

Man Kind, Medicine, and Technology...

To Start Off with a bit of an update of my turmoil the past couple of days and a walk through how technology is revolutionizing our Medical World... Well my new I-Mac is on it's way. I decided to forego the Macbook Pro or Macbook Air(as cool as they are), even though I really wanted a laptop. But, I got to thinking about it, and I have my I-Pad! It works as well as a laptop, and is lighter and smaller to carry around. So, even if I were to travel, that would suit my needs, or our needs if Jim goes and needs to be able to watch the client's and their servers. So, I have a 22 inch I-Mac that I wished the heck would hurry up and get here. I was so totally bummed out yesterday. I had been trying to work on my old laptop, along with an external monitor like I did before. This is a I-Book G4, that was bought about 2004 or so, for me. When I was doing web design work, and helping with the business, I needed a new computer and they bought this for me. It only has a 13 inch screen and thus the eternal monitor works to have a larger amount of "real estate" to work on. But, at that time this was one of the faster on the market! In fact Jim and his partner at the time, Mark was almost jealous because mine was faster than theirs. :) But, you don't realize how quickly technology changes until you have to step back "in time" to a computer that is even 7 years old. I know my I-Mac that got zapped two days ago, will seem like it was as slow as a snail compared to my new one on the way. but, being on this laptop has made me appreciate that technology has made so many advances in a time when all kinds of things are happening at a lightening pace. If I think back just a few years ago, I recall no cell phones. In fact the first one I had with the big "bag phone" by AT and T. Man and the "minutes" were expensive. When you think about technology and the medical world, wow, how many things have changed dramatically in a very short period of time. In my lifetime, I've watched knee surgery go from a very huge scar left from the surgery, traction and staying in the hospital for seven days, to arthroscopic surgery, with three tiny little scars and going home the same day after being operated on. Even our MRI, CT, PET scans, mammograms, bone density tests and just take a "run" through in your mind of all of these amazing types of tests that have only been here a short period of time. When I was about 20, I recall have to have a "brain scan". I was taken into the hospital, upstairs at our old hospital here in my home town, before they built our new facility, to a room where this huge machine took a very long time to "scan" my head. It seemed like hours I had to lay there very still, and I recall the imagines, and thinking then just how "out of this world" that seemed. Well in these times, we have advance so far in those realms, that our scans now days can show minute changes in skin, in organs, in our spines, joints, all of our bodies, and do so instantly. Even X-rays. There is no wait in knowing the outcome of an X-ray. Yo know the results usually before you even walk out into the world again. Advances in lab work, in equipment in our Emergency Rooms (save more lives than ever due to the amazing technology), having things like "Care Flight" available, nurses and doctors having better educations, better skills, using computers now for everything from our medical records (enabling doctors to immediately share a patients medical information), to telemetry. We can have kidney stones literally "blasted" to pieces rather than having to undergo being literally "cut almost have in two" as it was not long ago, when my uncle had stones several times. The old fashioned "basket" would not collect them, thus opening up the body was the only way to get them. Surgeries of all types and those changes. Just recently the "De Vinci" surgical computerized system has been introduced. That computer can almost do the surgery in itself. It helps physicians be able to do detailed procedures that once were impossible to do without cutting the body open and exposing the areas that need to be operated on. From pace makers, to internal pain pumps and stimulators. From "open" heart split your breast bone and wire you back to close that incision up to going through a tub inserted into the major groin artery along with a tiny camera saves hundreds of thousands of the once open heart surgeries that were once not long ago a necessity for any type of heart ailment just about. In the complicated world of "autoimmune illnesses" the advancement of tests, medications, and the knowledge now out there has grown by leaps and bounds. I realize that all of us, as patients, feel and know there is NO MUCH MORE work to do about these illnesses and the devastation and have the reek u[on every aspect of our bodies, the physical, our minds, the mental, and the emotional costs are still extremely high. Advancement just in the communication about these illnesses needs to be ramped up by a huge percentage. With early, and I mean extremely early ways to find evidence of these illnesses, we could not only slow down, or put them into remission but actually STOP these horrid illnesses before they ever have a chance to cause any type of damage. Again we have advanced in a huge way comparatively to just a few years ago. The ability to have researchers all around be able to collaborate data from clinical trials. The clinical trials that can now test new advances in medications, that just a few years ago did not dream of having the majority of them or the use of many medications we do have and them being able to be used to treat autoimmune arthritic diseases is saving lives each day. Having "Lupus" even when I was about 35 years old, first of all was a "death sentence basically. LIttle was known about the disease or what it did throughout the body. But, it was known that is was as serious as cancer, if not more. Don't get me wrong, these autoimmune diseases can still be "deadly" and are just as serious, if not more today. But, the difference is the way we are beginning to have so much more knowledge, more doctors that are studying these puzzling illnesses. With our vast changes in the way the world communicates often with the click of a "mouse", moves information to all the world, that once had to be shared by "snail" mail, or written in an article, yet the magazine article may not be seen for a month or more. Now, as soon as the news is out, more often than not, we know all about it via the internet. We are living more years as a whole now. That average age of people has risen dramatically. So, that means not only have we made many advances in all walks of life, but we also have to continue to move forward flowing down that river of human compassion, understanding and knowledge all over the world. WE are no longer just a "nation". We are no longer separated by oceans of water, for we are a united world, that in the blink of an eye, you can be speaking to someone overseas with a few key strokes, the touch of a phone number, or even see one another and speak over the internet on a messenger. Next time you are on Facebook making a post to "friends". Think about where those "friends" are. Whether in another town, another state, or another country, instantaneously you are "speaking" to them, with no "lag time". Each day our world becomes closer together. Each day we should never take that for granted, for it as mind boggling as it is, we even reached to out other planets, to find somewhere out there in the endless vastness of space to find if "life" exists there, and how that may sustain us someday.

Thursday, July 2, 2009

Critical, URGENT, FDA trying to BAN Script Pain Meds! Please sign petitions!

I wanted to update all of you in regard to what the FDA is trying to potentially do, which would be a nightmare to all of us that suffer Chronic Pain, along with our Chronic Illnesses. The one good thing is that the House and Senate did pass the "Pain Patients Bill of Rights". :) So, I applaud Congress for that one! :)

But, on not so good of a note, and many of you may already have seen this in the news... the FDA is potentially trying to BAN extended release narcotic pain medications! I am venturing to say, that there are many here with the group that suffers just as I do, from horrible Chronic, sometimes even Daily, pain. This would be a horrid situation for us, for our families, our jobs, our friends and our quality of life. When I finally found my current pain doctor, I was overjoyed! Not only was he ready to help me with my pain medications, he has so far been excellent regarding keeping my pain under control. For that I am blessed.

As anyone with Chronic Pain knows, many times our prescription pain medications are what keep us having a full life, having happy spouses, happy kids, keeping our jobs, and making our lives as normal as possible. Without them, most of us would be in the bed, on the sofa, rendered not able to do anything. I know for me it was the difference as black and white. Within 2 days of beginning my medications a year ago, I felt better than I had in many, many years... probably 7 or more.

Now the FDA is trying to put a BAN on some narcotic pain medications and if you have seen they are also possibly taking Tylenol at higher doses and putting it as a prescription, and then lowering the doses in the over the counter acetaminophen.

This is an urgent, critical matter and I have two petitions that are directly going to the FDA, The House, The Senate, and the President, as well as my own House Rep, and Senators.

Here are the URL's about both petitions, along with the American Pain Foundations information and enlightenment on the entire thing.

I urge you to read this information when you can, and if you feel moved to sign the petitions I would be most appreciative. Anyone knowing what Chronic Pain is like, knows this would be disastrous to all of us.

Now, a little about my situation. I was having issues with high blood sugar levels, and had been having higher than normal levels from the past 3 or 4 glucose blood tests I had done. My PCP did a glucose tolerance test, and it showed "normal" but still I am seeing spikes in my levels when I do the check at home. So, I still am possibly sitting at the "pre-diabetic" position, but for now I am just taking it on my own, and keeping an eye out.

Also, my PCP, due to all of my blood work, now confirms, I do have Lupus. I also have Sjogren's and Raynaud's, to add insult to injury. I had a very horrible flare, that is still kind of going on, that caused me to not just have cracks in the corners of my mouth, but they got infected, thus I had been on antibiotics again for two rounds. My bruising is horrible! I look like I have been beat from my neck to my toes with a ball bat! Plus some of it is not just bruising, but petechia, which is kind of like tiny blood vessels rupturing and I have what looks like flat blood blisters everywhere.

My PCP finally decided my best bet in finding out what potentially is causing this is sending me to a hematologist. In fact my appointment is this afternoon. I DO NOT look forward to yet another doctor, also having to go to Dallas, but luckily he is in the same building that my pain specialist is in! For that I am blessed! I hope that he has a good bedside manner, is not just test happy, and can find some reason for the horrible bruising and petechia, and hopefully how we can get rid of it. With the Summer here and HOT weather, I am totally embarrassed to go anywhere. People just stare at my arms and legs, and I have to wonder if they think I am have horrible contagious disease, or if my husband is beating me....LOL... I found some "cover up" cream for my legs, which helps some, plus I have been using the self-tanning cream. Those both help a little on my legs. The darker my skin is, the bruising then is not as noticeable.

I am now on Methotrexate. My PCP and I had discussed it the past couple of visits I had with him, especially since I am having flares frequently, and it seems I just have a hard time shaking them. So, I am now on Plaquenil, Methotrexate, and 5mg. of Prednisone.

My husband Jim, has also been having one heck of a time with his lower back pain. We are now working on getting him some possible financial assistance so he can go to a new pain specialist over in Waxahachie. Jim has no insurance, he does not qualify for state assistance, due to the fact here in TX, the ONLY way to get Medicaid is to be pregnant, or have kids under 16, etc.

So we have a county program for very low income people that helps with medical bills. Most counties have what they call an Indigent Health Care Program, for those who cannot qualify for any other type of assistance. We hope, from what the PCP says, if we can get the financial assistance to see this Doctor, he would possibly due the injections in Jim's back. So keep him and myself both in your thoughts over the next weeks.

It is not just HOT here, but way higher than HOT!! We have had little reprieve from triple digit temps, along with a high humidity and dew point levels, that make it seem 110 degrees plus now for at least 10-12 days. It is horrible.

As I finish this up, I want to wish all of you a safe, Happy, and Beautiful 4th of July weekend! :)

As we have seen so much "bad" news from the situation in Iran, to No. Korea and their stunts, then the loss of several celebrities this week, including Farah Fawcett who finally lost her battle with anal cancer. She was an incredibly strong and brave woman that fought it since 2006. If you saw her special on TV I am sure you were touched by her story also. If you did not see it, I think they are planning to air it again... so if you can catch it, it is an incredible story.

OF course, we lost Michael Jackson, Billy Mays (Mr. Oxyclean himself), and several other "famous" people over the past 7 to 10 days.

Here is the information below about the URL's for the American Pain Foundation, and for the petitions....

I urge you to go to this URL and add your name to the petition. Actually I have one on and one on Care2! This is an extremely serious situation and if you have kept up with the news you have already seen they are considering making changes to all types of over the counter and prescription pain medications!

For anyone with horrid Chronic Pain and Illness this would be a night terror you live in forever! This could mean you not being able to get your proper pain medications, it means putting a strain on our good pain management specialists, and potentially ruin Chronic Pain Patients quality of life, possibly lose their jobs due to the pain, harm family life and relationships, and make many of us have no quality of life.

PLease see these two URLs:

For more information about this situation and a better understanding of what the FDA is trying to do is on the American Pain Foundations Website. Their URL is:

The Pain Foundations website is one with the latest information on all types of things related to Chronic Pain and Illness. You will find it very informative for everything from the latest research, medications, government related issues, possible bills going through the Senate and House, plus so much more.

Have a wonderful July 4th, be safe... and I hope pain free....

by the way... those of you that have been on or are on the Methotrexate, how long did it take for you to notice a difference, if at all? What kinds of side effects, if any did you experience? What is your dosage? Are you or did you take Prednisone with it, or by itself? Plus if you think you know something about the medications, or anything else in regard to the Lupus, please post here or email me.

By the way, for patients with a New Lupus diagnosis, or if you have a family member that may not understand just how any of the autoimmune illnesses effect us... I just read a wonderful book. It is geared for someone newly diagnosed, and the first year of having Lupus. Even though I have read an enormous amount of information on line, etc... this book really helped me learn several things I did not know. It is written by a woman that spent between 10 and 15 years of doctor after doctor, medication after medication, test after test, diagnosis after diagnosis... before she found a doctor who figured it out.

The name of the book is:

"The First year of Lupus" (A Patient-Expert Walks you Through Everything you need to do and Learn).
The authors name is Nancy C. Hanger.

She also goes into things such as overlapping autoimmune issues, from Sjogrens' to Fibromyalgia.

I close for now in wishing everyone is healthy and having a wonderful Summer...

My thoughts are with each of you.... Rhia

Tuesday, April 28, 2009

New Strain of Swine Flu concern here in TX/Around the globe

It sounds like we are really in a spot of the unknown when it comes to this new strain of swine flu. It looks like it began in Mexico, but now has spread in TX, CA, NY, and around the globe to other foreign nations. I realize the CDC does not want panic, but they have raised the level to "4", which 6 is the highest alert as far as a pandemic.

I know I am certainly concerned. I live not far from Dallas, and there are many people living here that commute and work in Dallas. So, between people that have relatives in Mexico and have visited... even our neighbors were there not too long ago, to those who could carry it here from their work place or from shopping in the Dallas area... it does worry me. Due to the fact that it is actually killing "healthy" people, and those in the age range of about from 25 to 45... what does that mean for the elderly, the small children, and those like myself with compromised immune systems? Since I have several autoimmune illnesses, including Lupus, Sjogren's and Mixed Connective Tissue disorder... anyone with a less than healthy immune situation certainly I would think could be at higher risk of contracting this new strain, as well as having a more difficult time trying to get over it.

Lots of links and updated information coming in... take care... try and stay out of public places, away from those that are coughing and sneezing... wash hands frequently, try and not put your hands around your eyes, mouth and nose, especially when out and about in town... if symptoms arise that you feel could be flu in nature, contact your doctor or ER immediately, let them know they symptoms, so they can be more prepared to be extra cautious when someone who is possibly infected comes into the office or hospital.

Take care and be extra cautious....

Saturday, April 18, 2009

These incidences are beginning to be Epidemic it seems.

This issue of contaminated medical equipment and reusing equipment that is supposed to be thrown completely away has become an all out epidemic lately. From the latest, which is this one in South Dakota, which potentially put over 5,000 people in possible jeopardy of contracting HIV, Hepatitis and any other blood borne diseases, to VA hospitals, clinics in Vegas, just to name a few. Our nation is NOT some "3rd world" country, that is so poor that hospitals and clinics need to save instruments. Further more, even if it is a piece that is re-used, what ever happened to complete and thorough sanitation and the autoclave of them?

After personally undergoing more than 10 surgeries and procedures over the past two years, this terrifies me, and I am sure it terrifies others also. We go in with confidence that the hospital or clinic we visit, along with our doctors, nurses, and other staff that care for us should be using sterilized EVERYTHING! What are we going to do? Go into the operating room before surgery and check to see if all of the equipment is either disposable or clean? We have enough worry on our plates anytime we go in for a procedure or visit the doctor when some type of invasive tests will go on, about the risks, and our health, without having to add more stress on patients and their families that equipment is contaminated. Between this, and all of the hundreds of food, toys, animal food, and other things that continue to pile up with diseases, or possibly deadly additives, and now this every day announcement of yet another large group of people exposed to blood borne diseases, it makes me wonder what the heck the FDA is doing? What is going on with the board that certifies these health care places? I also in the back of my mind wonder if all of this is not just a coincidence, or is it possibly some type of "attack" on us as citizens of the US? I realize that may sound far fetched, but with these happenings being almost epidemic in proportion, I really wonder about a link to terrorism on our own soil again.

Here is a link to the latest :