Tuesday, November 8, 2016

WEGO Health Blogger Challenge 2016 for Day 8 "I think I I can" OR "I Know I CAN".....

WEGO Bloggers Challenge Day * 2016 - "I Think I Can OR "I know I Can?"




I "think" I can get over the "hump" of losing my Mom so suddenly, and find a renewed life ahead of me - I need to give myself more time.

I think I can get my home fixed up and it be everything I want it to be.

I think I can get back into my writing and blogging, and make my 3rd BOOK a "Best Seller".

I think I can finally face my cervical neck surgery, and my lumbar surgery and they will relieve more of my pain.

I think I can walk through this life, even with all of the medical issues that surround me, and continue to find people that care about me, I think I can find new friends, and move past all of the loss, of not just Mom, but the loss of a relationship, find understanding, the loss of my dear Tazzy, my Pug, who I still miss daily, and move past the emotional pain that continues to dwell within and make me feel as if all I've seen in life is loss.

I think I can do MUCH of the "renovations" to my home, myself, and then "face the facts" there are some things now, my body no longer will allow me to do.


I think I can become a much better activist, advocate, volunteer and "voice" for those who suffer from such horrendous chronic illnesses and pain.

I think I can live my life alone, with my pups, and find the place where I no longer feel "alone or abandoned".

I think I can continue to make great decisions about my future, and continue the path of knowing more about medical research, chronic ailments, and give others hope through my own research and going through what I have been through. 


"I Know I Can!"



I KNOW I can go back to Washington DC one day, and give Congress once again my own life's issues with chronic illness, chronic pain, and how many of us suffer horrendously, and make A DIFFERENCE!



I know I can find more time to write, to work on my painting, my quilting, my gardening, and be able to get on the path, of feeling good about myself again.


I know I can LOVE, my Kids, Grand kids, and family even more every day. I know I can show them that they are my entire world. 


I know I can get these two pups to QUIT peeing in the floor when they are upset with me!


I KNOW I can continue to make this journey through life by myself, take care of myself physically, mentally and emotionally, and gain more insight to myself in the process.


I KNOW I CAN STOP having HORRIBLE NIGHT TERRORS!


I know that although sometimes others do not say it, they are proud of my "charity" works, and I will learn that I DO NOT have to have a pat on the back from anyone else but myself.


I KNOW I CAN GET THE HECK WELL! I AM SICK AGAIN!

 

I know I now can face my own "day of reckoning" when that time comes, whether soon, or decades from now, and I am NOT frightened. 


#HAWMC

https://www.facebook.com/wegohealth/





Monday, November 7, 2016

Monday's seem to "hit" everyone in some type of lousy way, no matter who, where, when or why it is what it is.... & throwing our Circadian Clocks OFF

Well, between Monday's usual errands etc, I think I finally got caught up on my WEGO Health Bloggers Month Long Challenge! I am still NOT feeling all that well. I know part of my problems with feeling lousy is because I have "overdone" it and probably WAY overdone than I care to admit. I've thrown out old furniture, moved furniture, cleaned, dusted, been trying to get a couple more of my "inside" windows not stuck anymore. I have "storm windows", but before they put them on, I did not get a chance to really make sure the inside old windows were not painted shut, or just plain stuck because of the age of the home. So, it has taken me several months in all to get about 11 or 12 that I can open up the inside windows and then get to the storm windows and open them when the weather is nice, and get inside, in between those also... I have one very, very STUBBORN ONE over my kitchen sink. I finally was hurting so badly I sprayed it down with WD-40 and left it last night. I've not tried it yet today. 

We have really wet, dreary, weather so the wood is also swollen which makes it harder to work with. Then I spent an hour or more yesterday trying to get the small "cracks" sealed up on my front storm door. I had some of the rubber put on the bottom, but it was not really long enough, so I put a new strip on that has the longer rubber on it. Then I had to put one on the outside, plus put a piece on the side where the screen latches. This house has settled so badly, that it also why I have issues with these windows. It needs to be leveled, BUT THE COST OF HAVING THIS HOUSE LEVELED NOW PROBABLY RUNS ABOUT $15,000.00! It was about $10M when we checked on it years ago. They have to get under it, pour concrete posts, then take out the old creosote posts that are under there then try and shim and level it up. It sucks also because this house happens to be on ground that has room to get under it on one side, and then the other is very, very low to the ground. It would be a nightmare.... it was not a true "peer and beam" but just more like the "beams" under it. 

There is SO much that needs to be done to the house, that it makes my head hurt and spin just thinking about the cost of some of those things, like the foundation, and a new fence in the back, that requires cutting down trees MY NEIGHBOR NEVER CUT DOWN WHEN HE PROMISED HE WOULD AFTER TAKING A BUILDING DOWN THAT WAS ON THE PROPERTY LINE, TO BUILD A BIG HONKIN' GARAGE THAT IS LARGER THAN MY OR THEIR HOUSE, AND LEFT THE TREES, ONE HUGE AND ROTTEN. Half of it is laying in my back yard.... and that expense is astronomical to have someone cut down those trees. Some of them are small enough I can get rid of most of them, but about 3 or 4 someone would have to come in with a chainsaw to get them down. As MANY things as I STILL DO, ANYTHING TO DO WITH A CHAINSAW is where I DRAW THE LINE! I do okay with my "pole trimmer/cutter" and most everything else, but the "saw zsaw" and any kind of chain saw I know I would never be able to handle. I've lost so much strength in my arms, hands, wrists, especially my right one, and my fingers, thumb and hand is so swollen it almost kills me to sit and type. BUT, I make myself, so I hope that they don't get even worse, which I need to go back to my Rheumy. 

The MTX is NOT WORKING. and in fact I stopped taking it as of today. I was taking it once weekly on Monday, but I decided it was not worth it, since it's not doing a thing for the RA. It is much worse in my hands, fingers, thumbs, and now my neck, and lumbar spine and hips are just "on fire" they hurt so badly. So, I hope we will try Xeljanz next, but I am not liking my Rheumy's NP at all. She is wishy washy and said that was what she would do last time I was there, and then went back to the MTX after my Rheumy had stopped it a year or more ago, at that time due to me having so many infections.  I NEED the cervical neck and lumbar spine surgery..

A great deal of my pain I feel is due to my spinal issues. But, there are times just like when Mom became so ill, I had to put off having those surgeries, because she needed me during those months. I could not have helped her, had I went ahead with cervical neck surgery, and/or lumbar sacral surgery. So, we do what we can do in life, and at times that means putting up with some unpleasant times, and things. Hopefully making the "sweeter" pieces all that much better!

WEGO Health Bloggers/Writer's Challenge 2016 - Day 7 - How I chose to start my Advocacy Work & How I felt when I made that decision

Day 7 - WEGO HEALTH Blogger/Writer's Challenge 2016

"How I Chose to become an "Advocate" & How I felt about that decision"

I had really already been a "voice" in many ways well before I was diagnosed with RA, Lupus and Sjogren's. Before those came into play, I suffered with Migraine's from the time I was 17 years old.

I was also wanting to be in the medical field almost all my life in some way. Early in life, my thoughts were on becoming a nurse. As time went by, I married, had my son, then a few years later, remarried, and had my daughter, the idea of going to school full time in order to become a nurse was almost impossible. I was mainly the "bread winner" of my home, and my paycheck really needed to be there in order to pay for the house, car, and for all that my children needed as they got older. 

I had a chance when the kids were around early teen years to go to Nursing School full time and it be completely paid for by the hospital I was working at, in the Business Office. I did pass #1 on the Exam to get in, but then it was the "money" issues, of me having my paycheck completely cut out for at least two years, that made me have to decline going to college full time. Although I took classes at night and got my Associate Degree in more of a business light, the medical field has always been in my "blood". 

I seemed to "absorb" all things "medical" in nature. After being formally "diagnosed" first with MCTD, then soon that changed into Lupus, RA, DDD, DJD, Raynaud's "Hyper-joint mobility", Sjogren's and that list grew on, I then "knew" first of all, the Heart Attack I had at 40 years old, had to have something to do with the RA and Lupus. Although when I was 40, I was the "picture of health" ate properly, exercised daily, watched every type of food I ate, was the exact weight I should be, yes, I had a heart attack. At the time the doctors said the huge amount of stress I was under had caused it, which I am sure played a role, but I was SURE back then, that my Migraines, joints issues, that had already caused me to have several major joint surgeries, plus other things in my health that just did not add up, yet not one doctor took me "seriously" for another 10 years or MORE, before I finally got the diagnosis of "autoimmune disorders". Thus at 50, I suffered another heart attack. 

Now, back to my advocacy work. I was already writing a book about my "health issues". The doctors that had been great, and those that treated me like I was some "air-headed, over anxious blonde" because as we have come to find out "Chronic Pain and Illness can often be UNSEEN by others in our lives - Invisible to those around us, even physicians". 

Back then women were also kind of considered "off the wall", depressed, anxious, stressed and that ALL of their "illnesses" were basically psychosomatic, rather than being looked upon as most men were. A man walks into the ER or doctor's office complaining and they are taken seriously. Back then and still it happens, woman can do the same, and we get the answer YOU need a "shrink"... this has changed for the better and does not happen as much, but back then most women were just "crazy", when they complained, especially of pain. 

So, when I became interested in finding out how I could get MY voice heard, other than my writing, I turned to Facebook to do some research. I also began doing searches on the different illnesses, diseases and syndromes, and came to find out there was an entire realm of "advocacy" places, where the PATIENT'S VOICE was CRUCIAL!

No longer was it just the professionals that were hailed upon for answers, but us, those that suffered with these diseases had a voice in groups, by jointing some of the organizations, and even going right up to Washington DC (which I had long said I wanted to stand at the White House Steps and TELL MY STORY) ... and I came to find out, that is exactly what patients were doing! That the Arthritis Foundation, WEGO Health, the Lupus Foundation, the IFAA, and so many other of the non-profits were "enlisting" us, everyday, regular patients to tell our stories, and move those that could help us by money for research, by giving people access to clinical trials, helping to get our voices to the experts, thus that is what I did.

I dove in head first, to a couple of organizations, and I was excited, thrilled, terrified, star-struck, and scared all at the same time! When I was able to attend the Arthritis Foundation's "Capitol Hill's Annual Summit" and DID GET TO tell my story to some of the Congressional men and women, I truly felt that I had accomplished a greatness. That is when I also wanted to tell everyone else, that they TOO, right from their home and computer, can also make their voices heard. They are important, and crucial to making the diseases stand out, where we can get answers, get proper diagnosis', get the care, medications and specialists we need in order to survive all of the horrid illnesses, we've had to endure for much too long.

#HAWMC

Day 6 - "Superpower Sunday?" #HAWMC - WEGO's Monthly 2016 Blog/Writers Challenge! What kind of "SUPERPOWER" would I have & How I would use it?

Superpower Sunday! WEGO Health - Day 6 of the Monthly Blog/Writer Challenge! 

What kind of "Superpower" would I have and how would I use it?

Great Question, and one I had to give thought to. If I was able to have some type of superpower, first of all, I would want it to be something that could help ALL who are chronically ill, in chronic pain, and especially in some realm where I could help "diagnose" what was wrong and have the ability to fix it, or possibly stop it before it even happened.

So, I guess I would want the ability to see "behind" as far as years, decades and so forth, plus be able to see ahead in the decades and years to come. In that sight, I would want the ability to "look" at someone, or touch someone and know immediately they were ill, before any symptoms really arose. Then I would want to be able to put together what their future and their past looks like, even forward to their grand kids and all of their relatives ahead, along with all of their years before they were born, and find if their were "issues medically" that they had no clue existed. 

I would want to be able to "see" within my mind's eye, what was coming "medically" in the future, and take that to what had been gathered in the past, such as Penicillin, or the place where the "gene" for a certain type of breast cancer was found, and put that data together to help stop severe medical problems we as humans have, and event some way to "stop" those events before they were even known to exist. I know this sounds like more than "one" superpower, but it is mainly having the ability to "see" ahead and "behind", to correlate that information so "chronic illnesses" such as Diabetes, Cancer, Lupus, Rheumatoid Arthritis, AIDS, "genetic" illnesses that begin in "utero" long before they can be "seen", and the diseases that are to come in the future, able to "halt" their progress well before they are ever in fruition to exist within humans. 

I basically would want to be a "super doctor, medical research expert" and "fix" what is wrong well before it happens, as well as "heal" those who have already been in the "grip" of some of our horrid illnesses that strike down so many thousands and thousands annually.

#HAWMC

Sunday, November 6, 2016

Day 5 - WEGO Blog Writer's Challenge! "Who am I"? What makes me want to really stand up and be heard? #HAWMC

Day 5 - 

 

WEGO Blog Writer's Challenge! "Who am I"? What makes me want to really stand up and be heard? 

I've been a "passionate" and avid writer and poet since I was 13. I told people many years ago, my "heart's and life's work" was to write. That may entail poetry, short prose, and even as later in my life came, Music Lyrics and singing. I've always loved music, played the piano for years and took lessons, played the drums, (not all that good but I love it), and I always wished I could have been a good a singer as my Dad was.
When "something" hits me, whatever subject that maybe. From all of the advocacy, volunteer, and human rights issues, to diseases, and illnesses, plus chronic pain, the way I serve best is through my writing. That may be on Facebook, my blog, or through my books. Even my emails often reflect what "platform" I am on at that moment (not political for the most part).

I believe we all have a "voice". It is just that some of us, like any other talent, singing, painting, drawing, playing sports, or whatever your "best and favorite" thing is to do, we can "say" how we feel by the way we work towards those goals within those favorite realms we face.

I get upset because I find that although I "think" after one thing or the other "settles in my life" I will find MORE TIME to do THOSE THINGS I LOVE, it seems something else "holds me back" or take my attention from the exact thing I want to do.

I LOVED the trips every couple of months or so with my Mom. We had such an awesome time, heading up to just over the border of Texas to the Casino in Oklahoma, Winstar. Neither of us were or are "gamblers". Those times were more about "getting away" from it all. Bills, life, house, errands, cleaning, cooking, and all of the daily grind things we face. It was the drive and talking, the stop always at the same place for breakfast, just before we got to the Casino, and then walking into where there are NO CLOCKS, you do not know what time it is, whether it is day or night, you step into a world that totally takes your mind off the "world outside". It was watching Mom win a few bucks, or her sitting and watching me play some of the "penny games" that I loved with all of the "bonuses" and just us being together, deciding whether to play more or eat, or eat and go to the room for awhile... just her and I, off away from it all, and how much I enjoyed, watching her do the ONE THING she enjoyed in life, going and having that overnight stay away from it all, and the lights, the noise, and even going upstairs to our room and knowing she was worn out, but in a good way. 

I come back though to my writing. I "express" ALL of what I am feeling, whether good, bad or indifferent through my writing. Passion is there, love is there, frustration, being totally upset, or totally in heaven, whether feeling like I cannot go another step, or excited because I've been given another way to follow, a path to find something else around the corner.

The BEST right now is my TWO PUBLISHED BOOKS! As I work on 2 more, that I hope to finish, those two books published "before I left this world" was such an amazing thrill for me... SO, if YOU want to "know me", read my poetry, writing, my prose, my posts, my blog, and there you shall find "RHIA" - "ME'...