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!

ADHD New Clinical Trial sponsored by Cure Click




ADHD Research for #kids: Studies for #children with ADHD and angry behavior. No-cost active or inactive medications. Learn more today!




Catching Up, Letting You know what is going on in my neck of the woods, and telling you I am still here and will be working on my blog.., so don't give up on me....


 
 What's Going On with Me, Facing Surgery on my neck and lumbar spine, The RA getting worse, going to the "casino" hopefully & giving you a thumbs up I am STILL HERE!
 
 
 
 
http://www.medicinenet.com/script/main/art.asp?articlekey=17685

I've got my reservations to go to Winstar on Monday and stay overnight. Of course I've tried to go at least 3 times over the past couple of months., and something always either happens, or the Lupus Flares on me, so I have to postpone my trip. I DO have many things to attend to, and feel guilty even running off overnight. But, unless this "cold" or whatever the hell hit me a couple of days ago, I hope to be able to get away for a day and night. Lord knows I need it. Actually I need about a week's vacation away from everything. But, then I have the fur-kids, and they already give me enough grief when I leave for a few hours, even with the "sitter" coming in a couple of times a day, they would be a total mess, if I left for that long.

Ironically, now that I am just "me" and "them" (Bub's and Peanut) I spend more times "talking" to them, or talking to me, or singing if I am in the car, or I go into the stores, and I am constantly trying to "quietly" talk to myself. My way of making sure, I don't forget anything important when I go out and do errands.

I've got several decisions to make, some of them have got to be made SOON, like about my Humana insurance. Open enrollment will end on Dec. 7th or so, so I have to make up my mind whether to keep what I have or go to a different plan and so forth. Some things are probably going to change now as far as my insurance, etc. I feel my best thing is to stay with what I have now, even though a couple of my own doctors are not "preferred providers"... this plan allows to me go to a "non-network" provider, and the insurance will pay some after I meet the deductable. That seemed to be okay last year. The only real issue is that my special orthopedic surgeon, unless things change is NOT a preferred provider, so I have to pay his portion of surgery out of pocket, but I know last year that was not all that bad, and the hospital WILL get paid as a preferred provider, so, that makes it a great deal better. I've learned after my hernia surgery, when my doctor was NOT a preferred provider, but the surgery center was, he was kind enough to knock down the price on his end, so I didn't have to pay him a great deal, and in fact I think they sent me back a little bit of a refund.

But, of course, since I put off TWO surgeries last year, both of which this orthopedic surgeon is the ONLY one I trust to do anything to my neck or spine, I will have to encounter bills from him for that. By the time one surgery is done though, I should meet that deductible thus that way, I may not be out of pocket a great deal for the 2nd one. My neck is a must. Plus I don't know what we are going to do about the RA. My right hand, of course my "dominant" hand, is in such horrible shape now, that after trying to stir something, or cut a couple of small limbs, or paint on a wall for even a half hour, cannot open jars, and I can't carry much of anything with that hand and arm. The swelling had increased so much between my thumb, forefinger, and now I have developed a "lump" on my forefinger, which is probably from the RA, and that arm and hand, wrist, continue to grow weaker all the time. I FORCE myself to use it, so I can keep at least some strength in it, but it will almost "lock up" at times, with the RA, so bad. I had a follow up with my Rheumy about 6 weeks ago, and they put me back on the MTX, but it is not working at all. The dose is not as much as when I was on it before, but I don't think it will be the answer.

I also suspect that some of the pain, weakness, and so forth are from my neck, rather than just the RA. With one almost completely flattened disc, and another one probably almost as bad, those in themselves can cause the weakness, pain, stiffness, and some of the symptoms... plus now I find it harder to turn my head, my shoulder blade is beginning to have that "burning sensation" from the compressed nerves in my neck, and now even sitting here for a little while trying to type, that hand, arm, shoulder blade, and even down into my "side" are hurting and feel like muscle spasms, especially in my right side. Of course everyone with any type of joint, cartilage, and bone issues, know that when this weather changed, it did NOT help matters.

As I mentioned at first, I'm either fighting off a cold, or hopefully NOT some type of throat infection. I even almost felt as if I was losing my voice, late yesterday afternoon, and my throat has been kind of sore, along with my lymph nodes once again hard as marbles under my ears.

So, that is why I said I "hope" to be able to get to go to the Casino without having to postpone it again, since my body is trying to fight off "something"... here in town there are a growing number of strep throat issues, along with what they may call it scarlatina, It is a very red rash that goes along at times with strep throat, and there was an article last week in the paper here that our doctors are seeing many cases cropping up...

Out of everything I HAVE had, (I hope I don't jinx myself) I've never had "strep throat".... I had horrible tonsillitis & had those taken out when I was about 12 or so. But, I've never tested positive for strep throat, which is a good thing. You can be a "carrier" though and not have a case of it. Neither one of my kids had strep either, ear infections, they outgrew, but not strep.

Anyway, I am actually working on a "list" or in the process of, the things I need to get done (LIKE GET MY HUGE HOUSE PLANTS IN) before the weather gets too bad on them... and believe me, almost all of them, especially 3 of them are so huge, thank goodness I have this "roller type dolly" made for plants to try and get them in the house. My Palm tree now that has put on 3 or 4 new prawns over the summer, stands taller than my front door. And my fern, that started from a half dead 2.00 one I got at HEB is about 20 feet or so in diameter, and they take up a great deal of space, and are very heavy.... plus I have 4 HUGE Airplane plants, that are as large as I've ever seen so they also are extremely heavy and bulky... so again I am glad I bought that plant dolly a couple of years ago.

The BEES are about gone! He came back out last week and collected as much honey out of that bus as he could reach. It was between two of the heavy metal pieces inside the bus, and he had to cut into all of that to get to the main hive, found the queen, and he said there are now more than 40,000 bees, that came out of that bus!!!!

But NOW, getting someone who has the truck, trailer and wench to pull that piece of heavy bus up onto a flatbed, and haul it to Maverick or someone they can sell it to, will be a chore. I've tried to get the word out, because I am sure with all the heavy metal in it, it would bring some bucks, if you could get it hauled to somewhere like that, that buys scrap metal.

Anyway, there are always a billion and one things you can find that need to be done when you have a home.... I had almost forgotten I STILL HAVE THAT DAMNED BROKEN GLASS in my back bedroom... that I have almost solidly taped in with Duck Tape, and have cardboard over it, but I fear at anytime it could come crashing out of there. I could put a new piece in myself, but needing someone else to help hold it up while it is "pinned" in and then glazed or hell I've put some caulking in a couple of mine in that back room for now. It helps to sturdy that old glass pane stuff, for now, and really those 5 windows need the other "storm type windows" put over them like the rest of the house...So again another project... they just keep coming and coming...

I have got to get busy, so I close for now.... again still lots of stuff needing to be done, taken care of, and so forth... thus the reason I am not here very much. I am online some, looking things up and so on, but I don't have a great deal of time to post on FB. I do well to post on my blog, and do a couple of other things...

Hope all is well with each of you.... Me....

Lewy Bodies Dementia - Robin Williams Taken by the horrid illness and closer to "home" this took my Mom within 6 month and she passed away June 9th, 2016

http://curec.lk/2e1mP5t



#LewyBodyDementia #LewyBody #Dementia #LewyWho

 

 

On August 11th, 2014, the world lost a wonderful beloved man. Robin Williams was an amazing actor, comedian, and philanthropist, who touched the hearts of millions with his wit and humor. However, Williams suffered from a degenerative disease that, after his death, was identified as Lewy Body Dementia.

Although Lewy Body Dementia is not a rare disease, it is still widely under diagnosed and many doctors and other medical professionals are still not familiar with it. It is often confused with Parkinson’s or Alzheimer’s disease due to the similarities of the symptoms. Doctors thought Robin Williams had Parkinson’s before an autopsy revealed the massive proliferation of Lewy bodies throughout his brain, one of the worst LBD pathologies the medical professionals had seen.

In an effort to raise awareness of Lewy Body Dementia, Susan Schneider, Williams’ wife, wrote a letter addressing all doctors, medical professionals, and patient advocates to share her husband’s story. You can read it here: The Terrorist Inside My Husband's Brain.

There is no cure for Lewy Body Dementia yet but we are hopeful. CureClick has launched a new mission for a clinical trial for Dementia with Lewy Bodies to help find potential treatment for patients suffering from this degenerative disease. Please share this trial with everyone you know and help raise awareness.


This is a direct passage above from "Cure Click"

#OneLineOneDay - the Lupus Alliance Message so Crucial for ALL of us with Lupus







Today is the day. Join the Lupus Research Alliance and thousands in the lupus community today for One Line, One Day as we spread awareness with a simple message:

Join the Lupus Research Alliance in a unified effort to free the world from lupus through the power of science. #OneLineOneDay

The Lupus Research Alliance believes in the idea of collaboration as the way to find better treatments and ultimately a cure for lupus. Today we ask you to join us in sharing this message. By working together with the entire lupus community, we will accomplish our mission.

One Line One Day is your movement. Share this message with your friends and family through Twitter, Facebook, Instagram, email - any way you would like to encourage people to help us to spread the word. Through this simple action, we will increase lupus awareness today and beyond until we reach our mission of finding a cure.

New Clinical Trial by Cure Click for GERD


Cure Click Brings a Clinical Trial for Urinary Incontinance caused by Spinal Cord Injury, Multple Sclerosis

Approximately 80% of people with Multiple Sclerosis will experience some degree of bladder dysfunction. Symptoms include difficulty holding urine, difficulty starting a urine stream, feeling like the bladder won’t empty completely, having to go to the bathroom at night frequently, and having to urinate frequently. 

 

 

http://curec.lk/2dBya93

 

NEW CLINICAL TRIAL BY CURE CLICK - THIS ONE HITS ME PERSONALLY - LEWY BODIES DEMENTIA!

Again this is so critical to me in such a very personal way. If you and a loved one has been diagnosed, or shows "signs or symptoms" of this extremely rapidly degenerating type of Dementia, you can screen for a Clinical Trial sponsored by Cure Click. I watched it take my Mom within 6 months. She had "some signs" of dementia, forgetfulness, and several others about a year or two before. Yet, none that led to a real diagnosis, then this horrid disease seemed to "take over" suddenly, and I literally watched her "change" day by day, as I've told the story so many times. This is NOT your "typical dementia or even Alzheimer's) not that they are not awful, yet Lewy bodies as a whole different type of dementia, aggressive in nature... and honestly, they still lack a great deal of the "why's" of this particular one.... Please share this with others. I would so appreciate you giving out this to others that may have someone they have seen in this type of rapid declining of mental, physical, and emotional realms so suddenly.


Been told you or a loved one have #LewyBody #Dementia? Participate in a clinical trial! See if you qualify. http://curec.lk/2e1mP5t 





News From National Pain Report and Dealing with the Congress, CDC, and Government and Chronic Pain, Medications and much more!!!!



Chronic Pain Patient Rally Set for Washington D.C.

by Ed Coghlan


PLEASE GIVE THIS A READ! IT WAS in my newspaper a couple of days ago, and I wanted to post it here, separately because I know MANY of you are TERRIFIED of what us, as Pain Patients, Chronically Ill, and Already been through the mill, many times shall do, if things change drastically in regard to our medications.... So, I felt this needed to "stand out"... boy I need to again, since it has been awhile post my battle since the age of 17 years old with chronic pain, that started with severe migraines, and never stopped, going into all different types of chronic illnesses, that cause horrid pain....

The YEARS I SPENT just "trying" to find a doctor, a legitimate pain physician to treat me.... and it was only about 10 years ago, I FINALLY FOUND HIM IN DALLAS TX! The man is a true "hero" in my book for sure....



http://nationalpainreport.com/chronic-pain-patient-rally-set-for-washington-d-c-8831671.html



Cure Click WINS SILVER in a very Prestigous Awards Ceremony!

Cure Click is really deserving of this. They are really working hard to get people into clinical trials, and getting those like myself, to spread the word on these trials so more people get the information. 




CureClick Wins Silver at the MM&M Awards for Best Use of Social Media of 2016

 

 

http://community.cureclick.com/cureclick-wins-silver-mmm-awards-best-use-social-media-2016/#comment-309




Fearful that something is very WRONG & not sure what I want t do honestly....

First of all, I want to see who reads this. Some of those if they do, should "respond" to me quickly.

IF they DO NOT, then I know they lie to me about "reading" my blog posts and FB posts etc.


I've lost something like 24 POUNDS for no "real reason" over the past about 8 months. I "chalked" it up to stress of all I went through with my Mom, the Dementia, then the grief and everything that is STILL going on even after her passing away.

Funny how even "family" can be so damned "selfish" once they "think" they are getting a little bit of the "green stuff"... or if they are NOT, and so forth.

Anyway, I've been having severe "night sweats", I mean COLD, shivering, soaking wet to the bone, and all onto my sheets, my blanket and so forth. Those have been going on now for about 2 years off and on... but lately they are much worse.

Then I KNOW I am anemic, and have been, I take B-12 injections monthly BUT my RBC IS not BETTER but WORSE, anytime I have labs drawn.

Then there is the bone weary fatigue. I struggle with severe fatigue, and have always felt it was the Lupus, RA and so forth....

I cannot sleep, the lymph nodes in my neck stay swollen and the Left one under my ear is like a rock, and sore all the time.

THEN, I developed this one "lump" about the size of a LARGE marble on my L. Butt cheek about 6 months ago... rather than go away, now it appears like it is "sunken in" around it, with a bluish tint, almost looking bruised YET it is NOT bruising... I've had NO trauma there and now this past week up and down my outside right thigh, I began to "feel" the little lumps, about 4 or 5 of them...

I've looked and researched, and although we know often these things may mean nothing, YET I fear I may have "Non-Hodgkins" Lymphoma.

The "symptoms fit"... and with my other issues like Lupus, RA, Sjogren's, Raynaud's and so forth, my chances are much greater of having something such as this... I shall say no more for now... and see if anyone reads this....

#PrayforFlorida - Hope people heed the warnings and get out while they can.. May they be blessed by all thoughts and prayers....

#prayforflorida



MAY ALL BE SAFE OVER THE NEXT DAYS TO COME... HOMES, PROPERTY, CARS, ALL CAN BE REPLACED, BUT LIVES CANNOT....

I PRAY PEOPLE HEED THE WARNINGS AND GET OUT, OR TO A SAFE SHELTER....


OUR HEARTS AND PRAYERS ARE WITH EACH OF YOU UP AND DOWN THE EAST COAST IN THE WAY OF THIS HORRENDOUS HURRICANE!

Thousands Without Power in Florida as Hurricane Matthew Begins Its Assault

https://weather.com/news/news/hurricane-matthew-florida 

 

 

 

 

 

 

 

 

 

Surviving - Being a Caretaker even after the person passes away, dealing and coping with loss & still "feeling" someone still having a hold on you from the "grave" - Decisions when you are chronically ill, in pain & trying to make everyone "happy"

I've been trying to "get over" what all has been left behind for me to deal with since June 9th, 2016 - Actually more like the start from about 9 or so years ago, when I came back to TX, to help my Mom.

Most of you that follow me, know I was an only child, my Dad passed away in 2005, and by December 2005, I moved back here from Seattle, to help my Mom. I've talked about due to Dad's upbringing in the "Depression" back in the 20's and 30's Dad's "way" of handling life was much different than those who were younger. Not that he had "bad ideas" but there were many things he could never accept, that were just a part of life, as it evolved and changed.

We each know life does not remain standing still. Each day, there is something new, whether it be something horrible like the "wars" overseas, and innocent lives, even children suffering for no reason but greed from others who want to "rule" over people,

There are also many good things that almost change daily, from cell phones, to technology, jobs, the way our country is ran, and all types of good things that can change within a breath's space.

My life, as well as many of yours have changed, evolved, grown, fallen, gotten up, and tried to march on, even through the pain and suffering, the embarrassmentand the good, bad and indifferent of this world.

Speaking of, our nation and world are in such a torment, chaos and it's hard to fathom other humans can do some of the things they do to those like them, humans. Each day the news seems to worsen over not just all of the overseas fighting, hatred, war, and such, but right here in our nation, each evening, I watch almost in horror of what act of violence has happened that day.

I was left to "take care of" all of Mom's affairs, of course Executrix of her Will/Estate, as you can call it.

Mom had made some really "bad" choices when she was alive. She did some things that as much as I had tried to help, explain, and give her insight along with her financial advisor at the time, to get her to understand, some of what she was trying to choose, could cause family issues someday after she was no longer here.

I never "told" her what to do or not do, but helped her, by explaining why I felt one way or the other, as well as her advisor also helped to guide her into not causing family grief, anymore than we would already have after she had passed away.

I had been here over 10 years, and for most of that time, I helped her with just about  everything, from bills, to putting gas in her car, to helping her and doing her taxes, explaining things she did not understand, you name it, I did it... I am an only child, and I felt it was my responsibility to help her in ALL ways, that I possibly could. I can hope that I did for the most part a decent job at it.

Although a couple of things fell through the cracks, and as I said years ago, NOW, we have a family "uproar".... that although one member "seems" to not be hurt by what has taken place I feel badly that it has, and even more upset that the other 3rd party is NOT helping, and is acting like a damned toddler, rather than a grown up adult.


I am going to go ahead and publish this although it is not finished... I will finish it and post the rest very soon...