Well today of course is "April Fools Day"!!!! I am sure you, I and many others will have a "joke" played on them before day end.
Actually, ironically for me, mine already happened, kind of..
I wanted to join in on WEGO's Blog post month or as it is called
"Health Activist Writers Challenge Month"
I had the "list" so I went ahead and wrote my 1st post several days back. Well, I noticed a mixup in "dates" on the information, so I found out actually they start today, but it is with a "Wordless Wednesday", and I had written about a couple of "still funny" things that happened many years back! I thought by the .PDF we needed to write about something funny that had happened to us.
So.. since I've already written it, I'll post it with the Twitter sharing tag for my readers and maybe those at WEGO will get a kick out of it also.
So, here goes, my 1st Blog post for April Fools Day! #HAWMC
April 1, 2015 WEGO Post #1 For April Fools Day - Something, or Someone, or a Time that Always makes you Laugh
Years back, I was about 30 years old or so, we used to go on an annual snow skiing trip to either Santa Fe New Mexico or on up to Pagosa Springs, CO at the Wolf Creek Ski Resort. It was our trip to celebrate my birthday on the 15th of February each year. I always spent months, in fact the entire year planning it, saving for it, and it was always a time I cherish in my life.
One year a couple that lived next door to us, Rex and Jeanie, were going with us that particular time. We had been friends for a long time, and always enjoyed going together. This particular year, we had decided to ski in Santa Fe, NM. I had only been a couple of times then, and it was a bit closer than going on up to Pagosa Springs in CO, so we decided to stay there and ski.
There was a particular restaurant we ate at, and also a particular hotel we always stayed at every year. Staying there and eating at this special Mexican Food Restaurant were “traditions” each trip. This one year we decided to stay at a different hotel, and since we spent most of the time on the ski slopes, we thought we would just share a room and save that money for more skiing. Well, we had left Ennis Texas extremely early as usual. I never slept a wink that night before we left, so we were usually out the door and on the road by between 3 or 4 AM. It was about 11 hours or so to Santa Fe, depending on which route we took. Most of the time we would travel on Interstate 40, so we would go through Ft. Worth and hit I-40 up that direction. I sometimes helped with the driving, but this time the guys changed out, and they did the driving. There was just a magic each year about that trip. We rented a video recorder (this was back when they were huge and weighed a ton), so we had most of the trip on “record” to remember the rest of the year.
When had arrived in Santa Fe, just about noon, as our plan usually was, always about time for us to eat, so we went to the Mexican Food Place and had the feast of a lifetime. Between a couple of margaritas’ or a “cerveza” we about laughed our way right out the door. All of us were a bunch of comedian’s on the slopes and off during these incredible journeys. Each year seemed to be more special than the last. So, we decided to go back to the room, get unpacked the rest of the way, and possibly go to the downtown area to see all of the wonderful artwork, bead work, and just awesome pottery that the people there in Santa FE always had out on the “square” around all of the beautiful buildings.
Jeanie and I were unpacking and talking. All of a sudden we didn’t hear the guys making jokes and cutting up, so we turned around and both of them were totally “sacked out” asleep, one on each bed. It was already funny enough, because both of them began snoring in “tune” together. The more they snored right in tune with each other, the more the both of us got tickled. Well, my “then husband” sat up in the bed very casually and said, “What and the heck are you two laughing about? What is so darned funny?” I about busted out laughing again and said you and Rex were “snoring in unison”. He looked at me very seriously and said,“NO, we aren’t. We are in Santa Fe, not “unison”! I cannot tell you how funny that was! WE made fun of him the entire trip, constantly asking him if he had found “unison” yet and repeating what he said. It was just hysterical.
So, that whole ordeal became a joke between all of us for years. Every once in a while we would ask my ex, “Hey have you seen unison” lately! He would just turn red in the face, and get almost mad at us for making such fun of him.
On the very same trip, the 2nd night there, we decided to try a new place to eat. I had never really eaten much “Chinese Food” or any type of Asian cuisine. So, we decided to try a Chinese dinner for a change. We went in and the place was not busy at all. But, this was in the middle of the week, so we figured they just weren’t all that busy because of that. It was fairly dimly lit. But, it was adorned with all of the Asian decor. I was quite impressed with the “ambiance”.
Anyway, an Asian gentleman came to take our drink orders, gave us menu’s and of course I had no idea about that type of food. I had only eaten this type of food possibly once or twice, and everything on the menu sounded good. It always did that first night after being on the mountain top all day long. Usually all of us were starving from all of the activity of the day. Anyway, we each picked an entree’ and the guys asked about “fried rice” and if it came with the meal. Well, I am sure quite sure if the woman taking our order at the time really understood the question or not. She made the comment about each would get a side of “fried rice” of our choosing, chicken, shrimp, vegetable etc. So, above our regular orders we asked for “one extra bowl” of fried rice on the side. I think most of us had chosen something with noodles in it, or figured the way she talked the “side” with the meal we ordered would not be all the big.
So, she took our orders, and it wasn’t long until TWO of them, her and the gentleman who had seated us came out with the HUGE serving tray of “many” plates and bowls of food. At first we thought they had mixed our order up with another group that was there. But, no it was “our” order. So, they begin loading our table up with the plates with the entree’s on them. Then here comes all of these “extra bowls” of fried rice!!! They not only brought the “side” order of rice with our entree, but they also brought EACH of an a huge EXTRA bowl of fried rice on the side. In fact our table was almost not big enough to hold all of the plates, bowls, and everything they had put in front of us. We sat there almost dumb founded, but thought well, that is what they thought we ordered so that is what they brought us.
We began eating, laughing, talking, and spent at least an hour just tasting the different dishes all of which were delicious. Yet, even with all of us hungry, and the guys could eat everything in sight usually, we still had bowls of rice left over. So, it was about time to settle up the bill and leave. The woman came out, refilled our tea glasses, and then looked up at us and said just as politely and calmly as could be “You want more fried “lice”?” Oh good gosh, all four of us burst into tears laughing. Here is bowls of rice there was no way we could eat, and I even thought about taking some of it back to the hotel, but I knew there was no way we would probably eat it that evening, so we decided not to take a “doggy bag” with us. But, between us having ALL of those extra bowls of rice, and her “Asian” accent; then asking us if we wanted “more” fried rice was almost too much. We just about wet all over ourselves going out, and for the rest of the trip we kept asking one another “Do you want more fried “lice”?” Again, between the “snoring” in unison, and now the “fried lice”, we had the trip to remember for a lifetime. In fact, it has been something like 20 plus years since that trip, and still to this day, my now husband and I get a kick out of making a silly comment about, No, we aren’t in unison, we’re in Ennis!”. Of course, we had to wonder if that entire kitchen in that Chinese restaurant were also hysterically laughing at us for ordering all of that “extra fried rice”? They had to have just been as tickled at us as we were. It was very obvious that we had not ordered Chinese food very often.
There were many “moments” during those ski trips each February that I will truly cherish for a lifetime, and can’t help but grin when I think about them. Now, I am not able to go snow skiing. Due to the replaced knees and shoulder, the Lupus, RA, Sjogren’s and chronic pain issues, my snow skiing days are well past me now. But, the memories, the laughter, and some of the things that happened back then will last a life time. Rhia Steele 4/1/2015
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label health activist. Show all posts
Showing posts with label health activist. Show all posts
Wednesday, April 1, 2015
Saturday, March 21, 2015
AS YOU Go to DC Next Week to Represent ALL with so many health issues, may WE ALL do our part to BREAKTHROUGH the disparities that hold back Cures...
Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!
Wednesday, January 14, 2015
The Arthritis Foundation - Becoming an "E-Advocate" and How YOUR VOICE DOES MATTER!!! YOU CAN make a DIFFERENCE!!!
As we begin a Brand New Year with New Congress Members of our 114th Congress officially now in. We want to further our cause on the issues surrounding Advocacy for Arthritis - Ra and Osteo, plus Juvenile Arthritis. I would love for you to joint MANY others around our nation in support by being an "E-Advocate" for the Arthritis Foundation. You never have to leave home, and your input can mean SO MUCH when it comes to legislation about health, from medications and the "tier" programs, to making Medicare sustainable, to giving out funding for so much needed research in order to give "a quality of life" back to the hundreds of thousands of women, men and children that suffer from these horrid diseases. I am including a link to the page where you can sign up and also read more about being an "E-Advocate". My emphasis on "YOU MAKING A DIFFERENCE" is critical. Because I used to think probably what you sometimes think "Oh, how can I, one voice make a difference?" Well, I can tell you from personal experience that YOUR VOICE can move mountains. Also, your members of Congress DO HEAR YOU! So, you helping to send your opinions and how you feel on health matters - does matter! I urge you and I know many of you have a "full time" plate, of family, children, jobs, and living, and also many of you are dealing like myself, with chronic illnesses like RA, Osteoarthritis, JRA and many other illnesses very much related to these... whether it be other Autoimmune Illnesses, such as Lupus, Sjogren's, MS, Myasthenia Gravis, MCTD and the hundreds more (I met a woman yesterday who is a lab tech and drew my blood for some lab work - finding out she also has an autoimmune illness - at 25 she suffers from Diabetes 1) ... so "we" are out there... and finding your "niche" where your voice can be heard is an incredible thing to do. I can say without any hesitation that my advocacy with AF, IFAA/IAAM, Lupus Foundation, WEGO Health, my "consumer reviewer" with the DOD I served as last year, my trip to D.C. with the A.F., my work I did with IFAA and all they continue to achieve is just almost mind boggling, my blog, my writing, my Facebook posts, as well as groups... and then illnesses such as FM/CFS/ME (that I continue to feel are all autoimmune related illnesses) .... and so much more... being a judge for WEGO Health Activist Awards, getting to tell my story on Capitol Hill last year and then again a couple of times in the year to my Congressional Representative and my Senators.... and now I would like to further my own Advocacy in my State... I feel it is crucial that we make headway in Texas on a State Level of our Government with these illnesses. It means getting our State Congress on board, and even down to our County and Town people in positions of government, all instrumental in making great things happen when it comes to health care, medications, research, and healing those who truly would love to have another "normal" day in their lives... most of us wished we could gain just a portion of our "quality of life back"... and that in itself would mean the moon and stars to so many of us... as patients, as caretakers, as family, friends and often even our medical providers. They would like to have more options to address our every growing and changing autoimmune illnesses, chronic pain patients, those of us that our joints just deteriorate and often there may not be a "good" explanation as to why... yet they would love to be able to know themselves and to be able to tell patients the "why's" and "how to" fix them. After the numerous surgeries I've been through, more than I can count on BOTH hands... I can say, that the thought of having to undergo another surgery honestly scares the hell out of me... even the idea of being ill enough that I may need to be hospitalized terrifies me. Each night I pray that I will NOT be ill, especially never again so ill, I must undergo a hospital stay. After knowing what I know, and then watching an hour documentary just yesterday, on just how many "Superbugs" there are just lingering around every nook and cranny of a hospital, it terrifies the hell out of me.... With an already very compromised immune system... with illness, and then even more compromised due to medications, the idea of going into the hospital already ill, and hoping I don't become even worse in there than before I went in... just puts me in a place of mortal terror. The last bout I had with double pneumonia, and had a fever so high for me at 103 degrees that I was literally hallucinating, could not type, could not walk straight, could not see... and if I had not finally figured out to check my temperature, at the time Jim was still in the hospital, so alone it really didn't dawn on me.... then seeing how high my temp was, and in so bad of shape I did not even trust myself to drive alone.... it really was yet another eye opening experience for me. I got by the "skin of my teeth" from being hospitalized. Because my temp was not going down initially even with Aspirin, Tylenol, and so forth... and having it in both lungs... I convinced the physician at the Urgent Care (he also is an ER doctor at our local hospital) and I knew him... to allow me to go home first, and see how I was in 24 hours with medications... he still was almost to the point of sending me via ambulance to the ER... but I swore to follow his rules, and if the fever got any higher, or I became more ill, I would immediately dial 911 and go to the ER... thus I avoided that one. But, here I am already a compromised immune system, Jim had then been in the hospital about 3 weeks out from the accident... he still was so out of it, he was not able to truly grasp the idea that I was so ill I could not at all come up to see him... and for a full 10 days, I stayed HOME, on the sofa, taking my meds and doing exactly as the doctor told me. The very last place in the world I needed to be was in the hospital myself. So, as I tell my own dilemma from 2014, my point is that STILL when I could even through the entire ordeal with Jim's accident, my own illnesses, then the whole situation with the Sjogren's and my teeth literally falling out weekly, then getting Jim home, to proper doctors, getting medications, finding how the hell to survive the ever growing costs of meds, doctors, since there is NOTHING to pay any of it but us.... to my own issues with all of the dental bills also NOT COVERED... and fighting (no pun intended) tooth and nail for Humana to freaking pay... IT WAS AN ILLNESS that TOTALED MY TEETH, not a "DENTAL" problem... and the vicious cycle and circle carries on. So MY FIGHT is the "good fight" for ALL of us... it is time to put the USA on the World MAP as being a "premier" nation that DOES FIND CURES or WAYS TO PUT THESE HORRENDOUS ILLNESSES INTO REMISSION... to stop the damage they cause.... and we NEED YOU... and your voice also.....
http://www.arthritis.org/advocate/join-the-movement/sign-up-to-be-an-e-advocate.php# |
Wednesday, November 12, 2014
Ennis Daily News Local Paper Arthritis Foundation and Myself - Article
After lots of jumping through hoops due to out local paper having new people coming in, I got the article about myself and the Arthritis Foundation in and published this past weekend. I didn't realize it was printed, because "Rhia's Law" if it will happen, it will happen to me... I didn't get my paper thrown that one day, out of ALL days, that one day I didn't get the paper as usual. That NEVER happens usually....
Anyway. I will thrilled to see it, and also thrilled to hear one friend of the family who told us about it this morning at the doctor's office, which is how I found out that it had been published!!!
I went straight to the paper and picked up a copy, and when I went into the market, I had several people stop me and say they had seen it in the paper over the weekend!!!!! Which made it even better!!!!!
I am kind of upset that they "shortened" it a bit, because it was longer. But, I think due to the fact he had left it out, and it had not been published when I first sent it to them, he made sure he got it in immediately.
Again, I owe so much to the Arthritis Foundation and especially to Laura Keivel, who has truly made me feel that I have found "my voice" in being an Ambassador for the Foundation. "The Lord Willing and the Creek Don't Rise" as the saying goes, I hope to be back in DC, for the Annual 2015 Summit on the Hill, in March again. If at all possible I plan to be there every year my body, my mind, my spirit, and everything involved allows me to...
Anyway. I will thrilled to see it, and also thrilled to hear one friend of the family who told us about it this morning at the doctor's office, which is how I found out that it had been published!!!
I went straight to the paper and picked up a copy, and when I went into the market, I had several people stop me and say they had seen it in the paper over the weekend!!!!! Which made it even better!!!!!
I am kind of upset that they "shortened" it a bit, because it was longer. But, I think due to the fact he had left it out, and it had not been published when I first sent it to them, he made sure he got it in immediately.
Again, I owe so much to the Arthritis Foundation and especially to Laura Keivel, who has truly made me feel that I have found "my voice" in being an Ambassador for the Foundation. "The Lord Willing and the Creek Don't Rise" as the saying goes, I hope to be back in DC, for the Annual 2015 Summit on the Hill, in March again. If at all possible I plan to be there every year my body, my mind, my spirit, and everything involved allows me to...
Thursday, October 30, 2014
A Bit "Bass Ackwards" - Going to be a post from about a week ago... Topics for Blogging in November - Feel Welcome to Join in...
I had mentioned in a post about a week ago that last year in November one of our Health sites had put on a "30 days in November - 30 different posts each day event". I had actually thought it was for this coming November, then found out it was actually last year they did it rather than this year of which they done in 2013. So, I decided it would be a good way for me to find some "subjects" to post on that maybe a bit different, as well as getting all of you to jump in and join me. I said I would post some "subjects" for the days of the week, to get us started, and then please if you have any subject that has something to do with illness, medications, doctors, diseases, anything medical feel free to tell us your opinions.
So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.
Here We Go:
November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.
November 2nd - How about a "List" of things you "Know" you can do...
and others you "think you may do in the future"...
i.e. (I KNOW "I can tell my own personal health story to others")
vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"
November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...
November 4th - How do you Feel about "alternative medicines" and do you use them?
November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?
November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.
November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?
November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?
November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?
November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?
So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....
So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.
Here We Go:
November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.
November 2nd - How about a "List" of things you "Know" you can do...
and others you "think you may do in the future"...
i.e. (I KNOW "I can tell my own personal health story to others")
vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"
November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...
November 4th - How do you Feel about "alternative medicines" and do you use them?
November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?
November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.
November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?
November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?
November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?
November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?
So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....
Monday, August 25, 2014
Almost Forgot - Link to FB to See my New Teeth! Also other infor under a post about down!!
https://www.facebook.com/photo.php?fbid=10203697836581272&set=pb.1078281265.-2207520000.1409002262.&type=3&theater
I just had to show these off. I will of course get a much better pic of myself with them next time I am dressed and have my makeup done etc... They should be incredible for the amount of bucks they cost... and I still have more to go in about 3 months. In order to stabilize especially the bottom denture, due to the Sjƶgren's, we will have to do the "mini" little posts implants that the dentures will actually slide down on to keep them in place. That way I won't have to be so concerned about them staying in place, plus I will be able to eat like a normal person again hopefully. I know all of you are busy with kids back to school, etc... vacations ending, and back to where we all go once Summer Time comes to a quick stand still.... we are still in the middle of the law suit about the wreck... Jim finished PT/OT yesterday thank goodness... that was 8 weeks of 2 times a week that took lots of time up that I lost when I could have been doing more useful things. But, I kind of insisted I take him for the most part, so I made sure he was taken care of and not having to wait on some transportation to pick him up early, and then be late dropping him home... but he if he does decide to go back for another round in the future it may be that we have the transportation bus pick up him to take him and bring him home... I have LOTS of catching up to do, both on the house, on the computer, for my writing, for my advocacy..... ad all of the other million and a half other things I need to get done..... I promise to be "fixing" my blog better... I hope now can SEE where to POST a COMMENT... am trying to make it larger and a different color so you know to click it..... thanks all for standing by myself and by Jim and all of my family through this... you guys and gals are the greatest....
I just had to show these off. I will of course get a much better pic of myself with them next time I am dressed and have my makeup done etc... They should be incredible for the amount of bucks they cost... and I still have more to go in about 3 months. In order to stabilize especially the bottom denture, due to the Sjƶgren's, we will have to do the "mini" little posts implants that the dentures will actually slide down on to keep them in place. That way I won't have to be so concerned about them staying in place, plus I will be able to eat like a normal person again hopefully. I know all of you are busy with kids back to school, etc... vacations ending, and back to where we all go once Summer Time comes to a quick stand still.... we are still in the middle of the law suit about the wreck... Jim finished PT/OT yesterday thank goodness... that was 8 weeks of 2 times a week that took lots of time up that I lost when I could have been doing more useful things. But, I kind of insisted I take him for the most part, so I made sure he was taken care of and not having to wait on some transportation to pick him up early, and then be late dropping him home... but he if he does decide to go back for another round in the future it may be that we have the transportation bus pick up him to take him and bring him home... I have LOTS of catching up to do, both on the house, on the computer, for my writing, for my advocacy..... ad all of the other million and a half other things I need to get done..... I promise to be "fixing" my blog better... I hope now can SEE where to POST a COMMENT... am trying to make it larger and a different color so you know to click it..... thanks all for standing by myself and by Jim and all of my family through this... you guys and gals are the greatest....
Sunday, June 8, 2014
Help Out... Become An E-Advocate for the Arthritis Foundation and have YOUR VOICES HEARD on Capitol Hill!
I wanted to share something with all of you
about the Arthritis Foundation. Of course they have several ways you can
"help" the cause. One of those is to become an "E-Advocate". Which they
send you an "updated" newsletter about 3 to 4 times
a YEAR, and they do NOT give out your information, plus they may send
you an occasional email about say "RA, osteoarthritis, etc" that is
something they are "working" on to get the Congress people to be
educated, and give them a guide on how the "people" feel about it. You
never HAVE to do anything. But, if they send something you are
passionate about, say a change in how Medications "tiers" are now, which
is a huge one for all of us, you can have an email sent to your own
House of Representative and/or Senators... it is already made out for
you... you just pull the ones from your own location through a zip code,
and hit send, OR if you like you can certainly add or change what you
want to say. As I said, you do not get any daily junk mail, adds, or
anything of that sort. In fact I am attaching the URL explaining what an
"E-Advocate" does. If you would like to be one, please email me, send
me a message or post. It is a part of something I am working on to
become an Ambassador for them, so again I can take OUR voices to
Congress and Capitol Hill and represent ALL of us... and I did! And I
did see the great results, even in my own Congressman honestly, so I
know this works. Here is the URL... if you do decide to become one, all I
need is an email address, your zip code, & a first and last name. I
have to turn that in so they know I completed that 'assignment". I ask
of you to do this, because that gives me a chance to take YOUR worries,
cares, concerns, and what you want to see changed in the health field
for you, our nation, and tell our own government how we feel.
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