NIH CUTS IN SPENDING??? TAKING MONEY OUT OF RESEARCH FOR US WITH SO MANY ILLNESSES, My own priorities and doctors, Rheumy visit coning & Neck Surgeon, and updates for all

Been a very BUSY and beautiful weekend for me! I FINALLY got that OLD A/C OUT of the window and cleaned that mess up. In fact, I went out this morning to take the trash to the road and someone had already picked it up and taken it thank goodness! I mowed my front lawn, knocked down about 5 BIG old WASPS nests from last year! BUT, those darned things showed up this weekend! I've been waiting, and are already trying to build nests! I had one can of wasp spray but went and bought 2 MORE, which will probably NOT even be enough. The honey bees are also about to drive me nuts.... I am having to watch them, because they may try and rebuild the hive in that old bus. The guy that came and got them last year told me to watch out this time of the year. If I saw many, then let him know and he would bring a box so they would go in there rather than building in the bus again. It took him about almost a month all in all last year to remove all of the hive he could get out, get the QUEEN then all of the workers etc. He came back over like 3 weeks time, and kept getting more and more that he waited to come into the hive, and he got LOTS of bees. He said he felt like that may have been 50,000 or MORE when he finished up. It was scary but amazing! 

But, the damned thing "follow" me around. Yesterday I was working on my porch (I ALSO GOT OUT ALL OF MY HOUSEPLANTS ON THE FRONT PORCH) OMG, TWO OF THE HUGE ONES were difficult, but I have that dolly I can put them on and take them out on it... so I did that, weed eating more in the back lawn, sprayed for weeds again... put out more moth balls around the house and the storage building,did laundry, went to the market, I never made to washing the car, or getting to the cemetery yet... I HAVE THE FLOWERS, for Mom and Dad and my Grandparents all, but the weather was terrible at first, then the wind has been so bad, and that is fine for my parents... but my Grandparents are located where the wind is terrible so I have to actually tie down and anchor the flowers around the bottom of those "vases" on theirs so they will stay in... the flowers have been in the back of my car now for weeks... maybe I will get to that either today or sometimes this week. I have my doctors appt tomorrow FINALLY with my RHEUMATOLOGIST!! When they see how TERRIBLY MY THUMBS AND FINGERS, KNUCKLES ARE SWOLLEN ESPECIALLY ON MY RIGHT HAND I HOPE THEY DO SOMETHING. 

I am getting to where I lose more and more use of that hand daily. My grip is terrible. I barely can carry anything with that hand, and it stays so stiff, sore and swollen... if I get out and do anything, that involves my hands and fingers/wrists, they will swell and just almost not bend they are so stiff. BUT then next week I see my neck surgeon and my Cardiologist, and hopefully I can get the neck surgery done very SOON! The ONLY thing that SUCKS, IS that I MADE A RESERVATION TO GO TO WINSTAR on SUNDAY, NEXT SUNDAY, and my DAMNED APPT WHICH I DIDN'T THINK ABOUT WHEN I WAS MAKING IT IS ON MONDAY! So, I am not sure if I will change one or just "time" the drive back from Winstar to my doctors office, and drive back from there and see him. He is in Dallas, but I will have to really watch my time due to Dallas Traffic.

 It will be kind of mid-morning, my appt with him is at 1:15, so the drive usually takes around 2 hours from my home... so back to that Dallas area, would probably be about the time I would leave the Casino anyway. ALTHOUGH, NOW they are showing we MIGHT HAVE LOUSY WEATHER!!! OF course, always happens when I have something to do that means Dallas driving or if I make plans to run up to Winstar!!! GGGRRR... but that is TX weather this time of year. Anyway, I have got to look some stuff up and have 50 things, on my list... of course I maybe lucky to get 2 or 3 of them done today LOL... but hope all is well with everyone!!! BY THE WAY, DID EVERYONE HEAR ABOUT THE PRESIDENT WANTING TO CUT SPENDING WITH THE NIH???? THAT MEANS LESS MONEY TO HELP WITH RESEARCH TO CURE MAJOR LIFE THREATENING ILLNESSES! HE WILL build a damned wall, BUT does not CARE ABOUT OUR LIVES... WHAT A DAMNED JOKE! It makes me sick to even hear his name, what an ass... I SAID THAT IF HE WAS ELECTED WE WOULD BE IN A WAR IN LESS THAN 3 MONTHS, AND HE WOULD SCREW UP MEDICAL ISSUES FOR US... AND IT APPEARS MY PREDICTIONS COULD BE HEAD ON STRAIGHT!

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

Dealing with Daily "Issues" that for those who are NOT ILL, can deal with them fine! Take someone with RA, Lupus, Joint Issues and they are Major problems! Here is my Story!

I would have to write a BOOK to tell all I've been through this past few days. First of all, my pup, Bub's who is highly allergic to any type of "bite"... was clawing and scratching himself yet I could NOT find one flea, have not seen a flea, and had been driving myself crazy. He has always had skin issues, especially being hyper-sensetive and itching... and he was whining, crawling up in my lap, and even when I asked him"Bub's are you itchy?" - he would head for the kitchen so I would give him a Benadryl. Anyway, I FINALLY got him where I could really take a good look on Friday, and found a bit of "flea dirt' (which honestly I had not known about) on his bottom...where I knew any flea loves to hide... yet still NO flea's! 

So, I sprayed him, sprayed the other one down Peanut, then salted and and put the washing type of Borax own my rugs, and let that sit. That was after spraying the outside of the house, getting more granules and broadcasting them in the back, front and everywhere I could outside. I sprayed down everything in the house with "Flea Enforcer" which a few years ago, worked like a charm, and you can spray it on even your bed, pillows, sofa etc.... so, I got some of that done, had to leave the salt and Borax to sit for awhile, and went to run errands. I was SUPPOSED TO LEAVE YESTERDAY FOR THE CASINO! 

So, I as "trying" to get ready for that. I had a million things to do, in the yard, in the house, running errands (this was Saturday) and my "light" to tell me my tires were "under inflated" came on. It does that when the weather changes from hot to cooler, but I checked them and they needed air. But, it was already late in the afternoon, I was exhausted, needed to get home to vacuum up that stuff, pack my clothes, so I decided to wait and I would air up the tires Sunday afternoon. So, I get up Sunday, preparing my meds, my clothes, deciding what to wear, and also when to leave to try and "avoid" some of the rush hour traffic Monday morning in Dallas, headed to Winstar. So, I go and get me some quarters (now it is like 1.00 OR MORE for air) and I went to air them where I always do... downtown, at the station across the street fro the automated car wash. Theirs is on the side, and not a lot of traffic etc... so I can park where I can be as up close as I can be... So I get all of them stem covers off, get my quarters ready, and get the line ready to pull, and it comes on, and I TRIED AND TRIED AND TRIED, but my arms and especially HANDS are so stiff, swollen, and I guess weak from the RA and all the trouble I've been having -

 I TRIED THREE TIMES (3.00) and I STILL DID NOT GET THOSE TIRES AIRED UP! By then I was upset, hurting worse than ever, pissed, off (AND THIS GUY CIRCLED THE STATION 4 TIMES, WATCHING ME, YET NEVER OFFERED ANY HELP! THE FREAKING JERK!) Well, It is Sunday, I have no clue where to go to have anyone put air in the tires, and hell now you cannot get anyone to do it, even when I had my oil changed, I was pissed because i ASKED HIM TO AIR THEM UP, MY LIGHT WAS ON BACK THEN) I GET IN THE Car and the LIGHT IS ON, HE NEVER put the right amount of air in them, they take 35PSI IN THE FRONT AND 233 PSI IN THE BACK! I know I've done it myself and hell been doing my own tire airing up for YEARS AND YEARS! Yet, I just could not pull that damned line, hold it up to the stem tightly enough, and the push the nozzle to let the air in.... my hands, wrists, even neck and shoulders just could not let me! SO, I GO HOME IN TEARS, JUST SOBBING.... mad, and so upset, because I would NOT drive the car to Winstar without the tires aired up correctly. I wanted to leave EARLY Monday morning about 6AM or so, so I was NOT going to find anyone to help me and besides by then I did not want to hassle with the entire ordeal. SO, I wound up COMING HOME, CALLING AND CANCELING MY RESERVATION AGAIN!

 I GOT HOME DID THE vacuuming, this was already 5PM or after by the time I finished all of that, and made me and the pups some dinner, and watched a movie. So, that meant NO TRIP again... I've NOT BEEN OUT OF ENNIS SINCE BEFORE MY MOM GOT SICK IN JANUARY! I've not had ONE break, all I have done, is do paperwork (which is still not finished) paint, clean, cut down tree limbs, spend BUCKS to get rid of bees, get stung by those damned wasps, and do any and everything else, but I STILL HAVE NOT HAD EVEN ONE DAMNED AFTERNOON OF A BREAK! MY NECK IS BAD! I need surgery and now, after hurting my lower back again the time Mom got home from the hospital my lower back is always killing me... 

YES, I GO AHEAD AND CUT TREE LIMBS, AND DO EVERYTHING ELSE, HURTING OR NOT, BECAUSE HOW THE HELL DOES IT GET DONE, IF I DON'T DO IT???? If I allowed myself, I would sit on that sofa, and let myself "wallow" in all of the pain, the upset feelings, the hurt, the guilt, and the MAD PLACE THAT I AM over what I TOLD MY MOM SHE WOULD CAUSE, BEFORE SHE PASSED AWAY! NOW she is GONE, AND GUESS WHAT??? Exactly WHAT I TRIED TO WARN HER ABOUT IS HAPPENING! IT IS DAMNED IF I DO, AND DAMNED IF I DON'T.... I am too tired, hurting too badly, and need a freaking moment that I do not have to DEAL WITH CRAP! So, that is why I've not been "online".... I've not felt like it and not only that I HAVE NOT HAD EVEN A MOMENT TO BREATHE... I HAD TO GO, BUY A 12 VOLT Portable Air "compressor".... it runs off of your car, and I bought that yesterday when I found it in Wal-Mart. 

Although I still had to mess with it, and dammit, I know better, I've got to go and buy some stem covers, I always wind up dropping them... BUT I GOT MY TIRES AIRED UP CORRECTLY YESTERDAY AFTERNOON AND THE LIGHT IS NOW OFF! Plus NO MORE do I have to worry about pulling on a damned air hose, I can air my tires up anywhere.... It is small and fits right into my hatchback, with my car cleaning stuff... so PROBLEM SOLVED FINALLY!