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

Sunday, October 12, 2014

PERSONALLY - World Arthritis Day...

Personally, I've not put much up for WAD! I have been so busy wanting to get pertinent information out there from the URL's and so on, that I haven't taken the time to "step up" to the plate and give my own feelings, impressions, and how things are looking for myself and my own issues with Arthritis, both Osteo and RA. My other AI's from Raynaud's to Sjogren's, from Lupus to MCTD, from the upheavel of medications that we are constantly changing to try and find a combination that "works" for me, doctors, new symptoms, how my Medicare Advantage Plan appears to be taking a run for my money next year I fear, to all of the "busi-ness" of life, of the accident of course we are still dealing with, left right and center, to my own personal issues with my writing, and what I want to do at home, versus what my body "thinks" I should do.

My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.

The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.

The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily.  They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.

I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain. 

I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!

Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.

It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.

All of these did come out of a "medical dictionary online"---
 Definition of ILLNESS: an unhealthy condition of body or mind : sickness  
 Definition of DISEASE : an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors : sickness, illness—called also morbus
 Definition of SICKNESS
1: the condition of being ill : ill health
2: a specific disease 
 Definition of SYNDROME : a group of signs and symptoms that occur together and characterize a particular abnormality 
 Definition of PHENOMENON (or Phenomena) as in Raynaud's Phenomena
1: an observable fact or event
2:  a : an object or aspect known through the senses rather than by thought or intuition b : a fact or event of scientific interest susceptible of scientific description and explanation ....
I really do not feel looking up those even in the medical dictionary helped much. They still all come out to the meaning of the odd... but when I have more time, I know there has to be an in depth reason for calling something a "syndrome", rather than a "disease"... or they would just have called EVERYTHING one word... illness, disease, sickness, syndrome, phenomena,  ...


Anyway, I got all off my own thoughts, walked away from the computer and decided to take a long, warm shower. It has cooled off here today and been on of those dreary days of a typical Fall. No sun, all cloudy and our temps have dropped down, and feels like we have had 2 early mornings, at the 57 degree range... Just plain cool first thing in the morning!! And as ALL know or most, BONES and JOINTS that have arthritic issues, or those that have autoimmune illnesses, this time of the year is not our best. Many of us go into almost a "hibernation" mode... We cringe at the thought of the "cold" weather coming in, and the grey days tend to bring on a depressive way of thinking... As we know seasonal depression is always around in the Fall and Winter... and then we have the pressures (if we let them) of the holidays, family, friends, parties, cooking, cleaning and all of that bologna ... as much as we all love family, holidays, friends, and the beauty of the Christmas decorations, trees, all of the sparkling lights... none of that really makes a difference if your body feels like heck... then your holiday spirit feels down in the dumps too.

Around here for me, it has seemingly turned to either feast or famine. I am either running around trying to get everything taken care of, and wondering how I will deal with it all... to the place I am "looking" for stuff to keep be busy. Oh, it is not like I don't have plenty to do, because I can assure you, just right here in the house alone, I have some major projects staring me right in the face.. I really have wanted to redo my entire kitchen, including putting a new counter top on. I was going to just pick one out that is already "pre-made". I noticed they sell them like that at Lowe's.... and it would be perfect for me. I would not have be to concerned about how the heck to do it... it should be more or less pre-pieced for me, and the edges and so forth there to purchase to put the finishing touches on it, I would LOVE to be able to get a TOTAL KITCHEN MAKEOVER!!! New Cabinets at the the doors and hardware, sand all down, brand new handles and pulls... the floor that I've wanted and to repaint it the two blues I've picked out. Then we still have the bathroom that needs the walls completely finished as far as the texture, and even though the lights are up, nothing has been wired in... so the bathfan and all of that I will have to have someone come and help me with that part. I just don't think Jim will ever be able to get back up into the attic again to connect everything. We have it practically finished but that most important part of making sure all is wired in properly, and not going to short out etc... I am not that sure of myself. I've put in water heaters, hung and wired ceiling fans, and done quite a bit of DIY stuff over the years, but between being "eaten alive" by RA, Lupus, Osteo etc... the idea of climbing into the attic and trying to do that sounds like something I should get an expert to do.

Now as far as painting, redoing our music room... getting rid of junk etc... all of those things I will do slowly, and could manage most of it myself... laying the carpet, and then the floor in the kitchen will probably mean getting someone also to help out.

At the time we bought the house, we put a great deal of money in it redoing it. The house was a definite fixer upper, so we redone hardwood floors, completely redid the bathroom even making it twice as big, painted everything inside and out, every room with our "wainscott" look that I am so thrilled with even today. We had to buy all new appliances, had to redo the entire water, sewer, and redo the electrical wiring. The house was in need of so much... and we did manage to do many of the things we planned. As "frugal" as I was though, money ran out before we got through.  

I realize this is "NOT" a typical Autoimmune post full of what all is going on physically, mentally and emotionally in regard to illnesses...

But, I also needed to kind of update everyone about where things stand for myself ...

My plans, and one of those IS to WRITE my BOOK!!!! I've been giving some serious thought to exactly what I want to write; along with how I want to do it. I am keeping the title that Jim came up with, because I believe it will fit when all is done..

I got a bit pissed this week. A guy who also wrote a book of poetry, about 80 poems,  had an "author's reading" and signing at our library!!! Well, everyone made a huge ordeal out of it, even in our daily newspaper.

YET, when I wrote BOTH books... I had to almost beg to get an article in the paper, and I donated copies to our library... and not one soul ever mentioned me reading them, or doing a signing... and MY TWO BOOKS contain about 3 or 4 times the amount in his...

So, I am NOT going to allow that to happen again. My plans are to MAKE SURE I do a reading and signing of my next one... and I hope to have a "full house" at the library as he did....

Sometimes this world is truly NOT fair....

Okay I close for now with I hope you have reflected today on what World Arthritis Day means to you.... and that if you got to go to events etc... that you did so full of joy and meaning... 

Keep watching because they will never get rid of me! :)

Rhia 10-12-2014
 






Wednesday, September 24, 2014

Annual WEGO Health Activist Awards Time Again



Yes, that is right! Time has flown by and it is now your chance to begin "advocating" for your favorite "advocate", volunteer, blog, Facebook page, and more! See the link and begin your nominations! I wish luck to all this year for nominations and wins!!

Friday, January 17, 2014

You can Endorse your favorite WEGO Health Activist Daily!

I did not realize you can still go into WEGO Health Activists Awards and "ENDORSE" DAILY those that have been chose as "NOMINEES!!!! I was not aware of it until early this morning, so I did want to let everyone know you still have a "voice" in the 14 categories of awards to give your favorite Health Advocates a "Thumbs Up"!!!!!

My link is:
    https://awards.wegohealth.com/nominees/rhia-s-autoimmune-arthritic-systemic-life-1998

http://www.wegohealth.com





Now, of course I would LOVE YOUR "Endorsement" for "Best in Show - Blog", but I wanted all the Nominee's to have a chance to be endorsed!

Friday, January 3, 2014

Hope to be "Hopping" for All Things Autoimmune Arthritic for 2014!!!


Time!!!  Time!!!! TIME!!! To Make Things happen in the World of Autoimmune Arthritic Illnesses and for all of the things I so believe in!



Wow! Yes, I say, "WOW"!!! First of all it is just almost impossible that 2013 has "flown the coop" and brought in a brand new year! I am always saying that it just seems like life is flying by too quickly! I blame it on everything from "getting older", to "being slower", to "wearing out earlier than I used to before I finish something", to I honestly think that "time has began to slow down"!

In all honesty, I feel it is ALL of those above and then some. Age as I have found out does several things to you. Most of us it does much more than we even want to admit to. Yet, I am talking more about what it does to our "time". Let's face it, I am not sure about you, but, I do KNOW I am "slower" at getting some things done. It takes me twice as long to get dressed and ready to go somewhere. Usually it is more when I am "dressing" to go some place special. Such as to the Casino, out to dinner, a movie, or anything "special". From the time it takes me for a shower, then to dry my hair, make up my mind "what to wear", and probably change my mind at least 3 times, to makeup, shoes, and the jewelry. Now I must say, that "men" in general have it quite a bit less to do, in order to go somewhere, even if it is a special occasion. Their concerns usually are not "what shirt", or what pants to wear. Men never have to wonder, well does this chain go with this belt, and you know the story.  One thing for being male, is that in the normal sense of things, you guys have it much simpler as far as clothing and going out somewhere.

Then it is cleaning my home, doing laundry, and everything that entails. It has not been that long ago, I could on a Saturday morning, clean my ENTIRE house, and I mean top to bottom, dress, go the the market, and pick up everything else I needed to do or errands to run. I was home before I knew it, had that all put away, out to the yard where I could mow, and have all of my lawn looking great by mid-afternoon. When I was taking college classes at night and working, I could then sit down, do my "homework" which was usually 2 to 3 hours at least to complete, and by then either be cooking dinner or usually headed for the shower, to get ready to go out dancing, to dinner, friends, or whatever our plans were for the Saturday night. Now this was all done in the SAME SATURDAY! Stay out until midnight, sometimes catch a "early breakfast", go home, maybe sleep or rest a few hours, and it was off again, with either errands, to church, out to exercise, or whatever that Sunday afternoon brought. Then it was late Sunday, time to get everyone ready for the week that followed, and off we were on Monday mornings, kids to school, me to work usually at least a 20 mile one way drive, classes at night at least 3 nights a week, and that was in between everything else that was happening with the kids.

Honestly, I am already exhausted just typing that paragraph, much less thinking about "how the heck" did I GET IT ALL DONE??? I did, so thus "age" does have to be a factor. What I have also noticed, it is not just "me" that is slower, it seems we have "more to do" than before. I don't recall having to spend as much time at the market, as I do now. Between coupons, looking for the best deals, and just all of the lists of things to do, it took time. But, I also washed my car every Saturday, went shopping sometimes, other than house hold items, and still it seems "time" was more prevalent then.

Now I think "we" as a "society" have put WAY too much emphasis on "stuff" that takes up our time, rather than allowing "us" to use our time more wisely. You would also think with this day and age of computers, knowledge at our fingertips, being able to pay bills from home, buy from home, you practically NEVER have to LEAVE HOME if you have a way to get your market to deliver! Yet, in the scheme of things, I see that COMPUTERS can often be the "demise" of time. What happens when you are "checking out" and the "computer" goes down??? Well, there is no longer a way for most places of business to check you out "manually". Some of the checkers would not even be able to figure the sales tax, or heck give the correct change! Lord forbid, them have to "key" anything into a calculator and add it up! I know you have seen the same thing all too much. Certain things in this age of fast moving technology has made certain things extremely fast. But, "faster" isn't always "better".

Then we are stressed out it seems all the times. I feel (and I know I am chronically ill) that so many of us spend more time in the doctor's offices than we ever done. I used to never be in the doctor's office every month! Even my kids, they were not ill all the time. If they had a runny nose, or an ear ache, they took over the counter medications, rested a day, and went on their way. Now, each time we take a breath, they have a new medication for us to try.

We are bombarded with OVERLOAD, when it comes to our senses!!! We are shown so many THINGS, that we MUST have, or life would just not be worth it without them. I've "pared" down some of the "stuff" over the years that is just that.... stuff! Stuff that takes more time to dust, to find a place for, to throw away once it has sat for years and collected dust. I did not NEED an ENTIRE walk in CLOSET FULL OF SHOES! I love shoes; always have! When I worked, I had some nice shoes, and clothes of course. BUT, I did NOT need to buy a new dress, blouse, skirt, and shoes every time there was a "sale". That is another thing what is up with this SALE stuff???

By the time Summer was winding down a bit, and it was "school" clothes time and supplies, there are the Halloween decorations! This is in August! Well, as they push those out the door, here comes Thanksgiving, which is basically skipped over and Christmas decor comes out the first part of November, if not earlier. And just this week, as I watched in total amazement, our stores here locally, were putting VALENTINE candy out BY THE after CHRISTMAS sale, the DAY AFTER Christmas!  Now unless I am mistaken they "missed" New Years there; plus Valentine's is in "mid-February"!!! I know because my birthday is the 15th of February! Well you can bet, Easter, Memorial Day, and St. Patty's will be all rolled up and tossed out before "spring" has sprung!!!

So, yes, my chronic "illnesses" and my age, have made me slower. I admit it all the time. I no longer can keep up the schedule I used to. And frankly, I don't want to. Yet, Lord where is there any "spare" down time now? My kids are grown and gone, it is just myself, Jim and the two dogs, I am home, he works from home, our house is tiny, we can't possibly eat that much, and for the life of me, I can't figure out where time goes.

I am up at 3am, and by 10am, I feel like nothing has been accomplished! My brain fog does not help, I do have to help Mom quite a bit, and we do live in a much "faster" paced world than just 15 years ago.

We are SPOILED to IMMEDIATE GRATIFICATION!!! Fast food, drive thru pharmacies, and doctors in some places, faster cars, television without commercials, you name it, we want it, THEN!!! Buy a physical book!??? Heck, read it then on your Kindle, I-Pad, phone... I could take a week and talk about all of those things... but you already get the picture, which also I would make right here, "looking at you" from my computer!


So, this year, it WILL BE a BUSY 2014! I have made "more" obligations, but those that I have made, will be ones that COUNT for something.

I am now officially an "Active Volunteer" for the IFAA. I plan to help out as much as the Founder and Co-Founders will allow me. I plan on blogging for Activism and for Advocacy! Not only on my personal blog here, BUT on the International Foundations of Autoimmune Arthritis Blog, "Systemically Connected", which I am already a "Blog Leader" on! I also plan on doing some things in the Health Activism realms for WEGO Health. I am "nominated" for a "Blog" award, which I am still so tickled about, along with being asked to be on the "Judges Panel" for the WEGO Awards, which will be in ceremony this March! Of course, then there is also my "book"! My 3rd book! I have not "forgotten" what so ever. In fact I am more than EVER KEYED up and looking forward to having that "puppy" ready to be published by the end of 2014! Now, if you are wondering how the "hell" "she plans", on doing all of this, ah, great question!

My plans are to use my "time" more wisely. The "time" when I am feeling like doing all of these things above, plus play some keyboard, maybe even "bang" around on my drums, after I get over this stupid hernia surgery in a week!

I HOPE that all of my "Autoimmune Arthritic Illnesses" stay at bay... in other words I hope that the "Wolf" stays the heck away from my door this year, along with the others like RA, Sjogren's and what all that focuses on.

I am a "schedule" and list maker. I make lists , for the lists, when I do lists! Yet, rather than trying to "force" myself into more, I plan on trying to encourage myself to handle things much more efficiently. Now, don't get me wrong, I am frugal when it comes to how I spend my time. But, I want what time I spend to be in the right places, for the right things.

My health first (or try to of course), my husband, Mom, and family, my home, errands, and all that goes along with those things, and then my plans are to put much MORE TIME into the THINGS I have so wanted to do and NOW I HAVE THE OPPORTUNITY! Get my "Health Advocacy, Health Activism shoes on, put my head into the "real" meat of the autoimmune arthritic issues, do some great blogging, do some very meaningful work for the IFAA, WEGO and for all of those out there that deserve to have better information.  and one add to this list!!!

WAAD14!!!!! World Autoimmune Arthritis 14!!!! Be sure to keep watching, for that is going to be one monumental event!!!

And then never shall I forget, my book. I have it probably "written" several times over. My issue is trying to put it into some type of "interesting" and "catching" way a order goes, so you, the public will WANT TO READ IT!!! IT DOES MYSELF and No one ELSE a bit of good, if they do not pick it up and say "WOW!" She really has some great things to say.... ;)

So, for now I close and I will call this my 1st "Initial" Post for 2014!!!

I hope to "SEE" each of you making comments, suggestions, asking questions, and helping me to help you!!!!


                                                                              

Saturday, December 28, 2013

Only a Couple Days Left to Nominate for WEGO Activist Awards!!!!!

Please be sure you "run" over to WEGO Health and Nominate your favorite Activists!!! From the "best blog", to best health "activist" geek, there is an "award" for many that you may feel that deserve the "accolades" for their vast efforts in the realms of Health and how they give themselves willingly helping to show more people about different illnesses, make others more aware of illnesses, provide enough "pull and push" to get more research, more medications, more doctors, and more activists on board the "WEGO Health Train" and help to try and give more attention to so many health issues that definitely need to be looked into so much further!!!! 

Take a look at the link below and see which of your favorite health volunteers/activists may fit one or more of these Awards! The 31st of December is the Deadline so don't delay!!!!!




Below are only THREE of the 14 Health Activist Awards being given out by WEGO Health for the year's annual awards event!


https://awards.wegohealth.com

                                                          https://awards.wegohealth.com