LUPUS Awareness MONTH May 2017!!!! LOTS you can do to get message through to Congress, to Walk, Advocacy from Home and Much More!








Use the Lupus Research Alliance Legislative Action Center to tell legislators why we need greater funding for scientific research at the National Institutes for Health and allocations to continue a dedicated lupus research program at the Department of Defense. Equally important is to convey why we must make sure that any new healthcare policy allows all people with this challenging disease to get the critical medical care they need. And to be most effective, share your own story – share how lupus affects you! bit.ly/LupusLAC

 

 

Cervical Neck surgery OVER BUT COMPLICATED, PAINFUL AND HARD COLLAR DRIVING ME NUTS!!!

I am home, thank goodness. Got home yesterday afternoon about 4:00PM... I thought I was staying another night... the surgery was COMPLICATED AND TOOK 3 HOURS!! Things were MUCH WORSE than even my surgeon thought. Was should have been a 1 or 2 level surgery, turned into a full 3 level surgery, plus talk about PAIN!!! MY entire chest, arms, head, neck, even my left ear HURT SO BADLY, they really could not give me enough meds to get it calmed down. 

My throat was so sore I could not even swallow a popcicle, so of course I stayed Thursday night. I found out yesterday morning we had waited WAY too LONG doing the surgery, thus the complications. My neck was over 21/2 INCHES SHORTER than it should have been, so he had to literally STRETCH MY CERVICAL SPINE ENOUGH to get those over 2 inches BACK AND put in the discs, and get the cage in, and then I had a BONE SPUR THE SIZE OF 2 INCHES, that he removed, and used it in the cage for my bone to hopefully regenerate itself. Needless to say I am miserable. This very HARD COLLAR, ALONG WITH THE STRETCHING, feels like someone put my head in a vise and literally PULLED MY HEAD AND NECK UP ALMOST 3 INCHES. Jason even said he could tell by looking how much straighter and longer my neck was yesterday. 

Anyway, I pray this all heals well, and never will I WAIT AGAIN, to have something like that done... of course my situation was crazy last year between Mom being so ill, then passing away so quickly, then between after the funeral and paperwork, my twisting both ankles, and then falling and fracturing my hip in December none of which was "my fault" for not having surgery much sooner... honestly the surgery should have been done December a year ago, but that is when my pain pump went out, and I had to have it replaced on the 29th of December 2015, thus about January 10th is when Mom then was in such a fast moving Dementia, I could not have surgery due to that, and the her passing away in June, I severely sprained both ankles the right one horribly worse, which my doctors feel contributed to me tripping and breaking my hip.... 

my lower back honestly has been getting worse now and really had been bad before the neck issues came up... so I feel I may face lower back surgery later in the year, especially if we see that things are worse, as I fear they maybe.... anyway, I am home, and now they have adjusted my pain meds, where I am not in so much pain, just MISERABLE FROM THIS DAMNED HARD ITCHING COLLAR!!!! I hope this does the trick, and now I get better as far as the cervical spine.... more later, I can't sit here for long and type at my desk, but I may be able to use my laptop soon on the sofa.... Hugs to all, Rhia

May you Find Blessings, Peace, Harmony, Love and a Wondrous Easter Day and in the Days Ahead....

 

May You Be Blessed with Hope and Love Today, Easter Day and in the Days Ahead....



Happy Easter to All! Mine started out insane, I didn't go to bed until late, just because I have been NOT sleeping for several reasons over the past 8 weeks or so. Either I have terrible night terrors, that wake me up, and I am crying, then I get "stopped up" and can't breathe, and by the time I get settled, then I am not sleepy... or I just wind up turning the TV back on, and then I can sleep at times. I keep waking up at 2am, 3am, 4am, until I am so sick of the hourly issue, that I give up, get coffee, and sit up watching something on Netflix until I feel okay enough to do things. 

Also, my pain level is off the charts for the most part. My neck is so bad, that i am in constant pain with either a horrid headache, or my neck so stiff I can't turn it, and then I get more tense, and my entire body hurts.., this humid weather is not helping... although not all that "hot" the humidity has just been off the charts this past several weeks. I get up and every morning even if it has not rained everything is so "wet" grass and all, it it is muggy, sticky and too wet to even take Peanut out until it dries out later in the afternoon... plus I've had so many "catch up doctor visits, then Echocardiogram last week, follow ups on my hip, which is really been sore, but between the weather stuff, my RA is in a severe flare, and so is my Lupus, so that contributes to the pain, and it just all continues to circle around and around, causing me to not sleep, and then by early afternoon, I am so exhausted, I've just been up way too many hours, but I don't want to try to go to sleep at 8 or 9 pm, then the same cycle starts over again.

 Also, I've had so many things as far as paper work, trying to decide if I even want to "stay" in my house. I've just about decided to sell it. Right now it is a "seller's market" and like my investment lady and I talked about last week, I could sell quick more than likely, and do it without even a Realtor, and save that money and hassle. I've just gotten to where between ALL of the outside stuff, mowing, fire ants, other ants, bugs, and so forth, the weeds are nuts, the wasps and such are already trying to build nests, and I am constantly fighting them so i don't get a nest like last year, where i don't "see it" and they sting me, because I don't find the nest... that is what happened last year... they built 
in my gate to my car port, and then I found a huge nest from last year close to my front porch a couple of weeks ago... i could not see it last year, so I was constantly having to watch to keep them from getting in the house... so I've knocked down the old nests, been spraying and knocking down new ones as they start them, but I have dead trees, the "weeds" in the back look more like "trees" than weeds... so trying to weed eat, mow, cut, chop, saw, and then the inside NEEDS so much work, I still don't have the floors finished in the bathroom, kitchen and now the kitchen and bath need to be either finished or repainted... the outside still needs painting and it is terrible... plus it needs a roof... 

I know that is coming soon.,.. and there is just so much to keep up with that costs a fortune, or is beginning to be things that my "body" does not like me doing... like sawing, and even using the light weed eater and although all is cordless and battery operated still with all of my joint issues, pain, and now the Lupus and RA getting worse, I pay a price for 3 or 4 days after i work on things.. then I suffer like today, I hurt from head to toe... I do know having hold of that pole saw really helped my arms... i actually have "muscles" built up from the weed eating, mowing, sawing, cleaning and so forth... rather than all droopy, although the skin still is some, I finally have built back up some muscles in my arms and legs..,. if someone would have told me just 10 or 12 years ago, I would not be able to do even little things, trying to use a can opener, button buttons, zippers, and all kinds of things using my wrists, hands and fingers, I would have thought they were nuts... not true... my hands, fingers, wrists, and elbows are always stiff, not able to be used to open anything, and trying to do just about anything with them, on some days is almost impossible. Even sitting here to type, hurts my hands, wrists, fingers, but my neck, shoulders, lower back, all of me takes a "beating" from even sitting for very long.., it sucks and I KNOW I AM NOT THE ONLY ONE, but I think after doing some thinking, and I found out i probably can do some investment stuff where I would have enough money from one or two of them to pay rent monthly for an apartment, and avoid all of the money I am pouring into this older home, that truly needs much much more work and funds, than I want to put into it.


I never thought I would feel that way, but after living in Seattle for 5 years, in an apartment where NONE of all of those things like upkeep, yard, problems, were anything i had to worry about, honestly I LOVED BEING FREE... I love having a yard, flowers, trees, but everything that goes along with them is getting to be more of a burden than "fun" like it used to be... I "hope" that between myself and my doctors nurse, who can be a jerk honestly, that we have my insurance company now where i DO NOT HAVE TO HAVE A CT ETC. before my neck surgery! They told her last week I needed an "MRI" before they would approve it, well i cannot HAVE AN MRI DUE TO MY PAIN PUMP, and a CT scan is a waste of time and money - I have TWO LETTERS, ONE FROM JUST LAST DECEMBER, just before I broke my hip stating the INSURANCE APPROVED MY NECK SURGERY.... I fell, and we had to postpone due to the hip fractures... but the neck of course is WORSE, AND NO CT SCAN, will show different... the X-rays in themselves show the damage and how much worse it is than just 6 months ago or so.... anyway, I am going to stay on the nurses butt this next week, so she will do her part. I DID MINE FRIDAY! I got all of the information from the insurance company, faxed her the letter, and what they told me on the phone, and if she will not drag her feet, we can probably get it set up and done the last week of the month. I decided to wait and did not go to the Casino today.., the weather here and up that way is "wishy washy" today and tomorrow... and besides, 

I've had so much to do here, before surgery, and I feel like I've been beaten, I decided to "change" the reservation until next Sunday,,, I hope to go then and if not then wait until I am over the surgery in 5 or 6 weeks then I can go to the Casino then. I did get my ham baked, I made those home made biscuits with the Sprite Zero that are so good, got some fresh fruit, I have sweet potatoes etc if I wanted to fix them, and I have a half a cake that I baked earlier this week, etc.,,, so I don't think I will do much other cooking, I did bake some very "healthy" oatmeal cookies this morning, without all of the fat, sugars, carbs and so on in them... I ground my own oat flour, used Splenda, and the Ranger cookies of course have Oatmeal and Corn flakes in them... so they don't even have any white flour, and I used "County Crock" and not any type of oil or "bad" butter sat fats etc... they turned out really good and are not too sweet, and don't have a bunch of empty calories and "processed mess" in them, I re-potted a few of my plants that needed it, and right now my arms, hands and entire body hurt like hell. I think I am headed to the sofa for awhile to rest... I HAVE TO HAVE A SHOWER in a bit, but did not want to take that until I am finished with all of the "chores" stuff around 1st.... Hope everyone has a very blessed Easter and in the days ahead my prayers are that we find hope, peace, and "good things"... the way our world is, right now honestly it is frightening.... but "worrying" won't fix it, so rather than worry, I am just doing my own stuff, and enjoying my days and moments as they come.... Happy Easter again to all..

Glorious Day (Living He Loved Me), Casting Crowns *lyrics!* (Happy Easter and May You and Your family be Blessed by this Wondrous Holiday Weekend... Let Hope,Peace, and Beliefs Stand and Matter)

I often don't share my deepest feelings especially about things that are
so very, very special and personal to each. 

 

Our world, our nation, and
our people NEED to truly get back to knowing where we can Turn, and WHO
we can turn to, when life is too much of a burden. I often forget, and
try to carry that Cross on my own shoulders. 

 

As I thought I may spend my
holiday gone overnight, now the weather is appearing to be stormy and
bad both Sunday and Monday. I am not one to drive hours in terrible
storms if I can prevent it, thus I may be right here at home, rather
than gone overnight. But, wherever I am, I know He is with me. I hope
that message resonates throughout our heart and souls.... Love and Happy
Easter, May you find your "Glorious Day"....

 

May
the True Gifts, of Peace, Harmony, Hope, Trust and the Love of Family
and Beliefs Fill your Heart and Soul during this Glorious Weekend. A
Holiday to be Treasured, and continue to keep us Strong even during the
worst of times in our Nation and World. 

 

I
share this in Honor of my Own Beliefs, that stone was rolled away many
years ago, and the True Life we have been Given Came Forth to Share
Salvation with All that Want to Accept it.

 

 

Happy Easter and with Love, Rhia

APRIL 17TH WORLD HEMOPHILIA DAY! for 2017



 

WORLD HEMOPHILIA DAY FOR 2017 ON APRIL 17TH!!!


"MUCH TO YOUNG TO FEEL THIS DAMNED OLD"! Ra, Lupus, Neck Surgery, Osteoporosis, joints falling apart, knee and elbow issues, and it just goes on and on....


I LOVE my home and I LOVE working on my home and in my yard, BUT it is to the point that the "working" should be more of "enjoyment" rather than feeling like it is making my Lupus and RA WORSE! I've also now "tweaked my right knee and yesterday "bumped" my left elbow that already has screws in it from about a surgery done in 1998 and it was already needing to be worked on again, but I must face the Neck surgery... so I CANCELLED my reservation for TOMORROW AT THE CASINO (as I thought about I HAVE NOT HAD ONE NIGHT AWAY AT ALL OTHER THAN BEING IN THE HOSPITAL IN OVER 16 MONTHS, AND I HAVE NOT HAD A "VACATION" SINCE MY Daughter's wedding and then a trip to Vegas in 2005!) THAT IS WAY TOO LONG TO GO AND NOT HAVE A DAMNED BREAK! I feel like all I do, is work inside the house, work outside the house, buy STUFF TO WORK ON THE HOUSE WHICH IS GETTING TOO EXPENSIVE! 
 
Then after BUYING ALL OF THIS STUFF, EVEN THOUGH ALL Rechargeable battery operated, even the lawn mower, I FEAR EVEN WALKING ACROSS MY HOUSE! IF I go outside, it seems i run the risk of fire ants, wasps, yellow jackets, bees, or having a damned accident, although I am SO CAREFUL. In fact even the BREAK OF MY HIP was inside, me stepping over a small gate i had stepped over a 100 times! 
 
So IT IS NOT LIKE I AM ON A 8 FOOT LADDER PAINTING, but stepped too HARD OFF A SMALL LADDER AND TWEAKED THE KNEE A COUPLE OF WEEKS AGO, ON THE RIGHT SIDE ALSO, THEN YESTERDAY I HAD THE OLD WINDOW PROPPED UP IN MY OFFICE, PUTTING THE SCREEN INTO THE "STORM WINDOW" ON THE OUTSIDE OF IT, and that window (that I even propped UP MORE than the others because it is more loose and can fall, and dammit it came down on my left ARM, RIGHT AT THAT ELBOW AND THANKFULLY JUST SCRAPED DOWN, BUT STILL LEFT A "GOOSE EGG" KNOT that scared the hell out of me... THEY WENT UP ON MY HOUSE INSURANCE OVER 100.00 A YEAR! MY TAXES ARE GOING UP, The new A/C, the new saw, the stuff for ants, for wasps, for other bugs, ALL OF IT COSTS A FORTUNE, and I CANNOT PAY TO HAVE STUFF DONE! NOT THESE "smaller" daily things like hanging a new mini blind, or cutting a few small tree branches, or putting out fire ant killer... why I would be broke in a year or less, and hell I am going broke just BUYING THE CRAP I NEED! I bet I have spent over 2,500.00 AND I AM SURE MORE, ON JUST STUFF TO WORK ON THE HOUSE WITH INSIDE AND OUT, ..... it is just insane... 
 
If I MOVE INTO AN APARTMENT OR DUPLEX, THEN I DON'T HAVE TO WORRY ABOUT BUGS, ANTS, IF AN APPLIANCE OR WATER HEATER GOES OUT, A ROOF, THE LAWN, IF SOMETHING BREAKS THEY FIX IT! I do NOT have to have HIGH HOUSE INSURANCE OR PAY TAXES ANYMORE! I know RENT IS EXPENSIVE... BUT I CAN DO WITH A 1 BEDROOM small place and I COULD SELL THOUSANDS OF DOLLARS OF ALL OF THIS NEW STUFF OUT, AND NOT NEED IT ANYMORE.... I made my reservation for EASTER SUNDAY! I know that may sound BAD, BUT my kids will have plans, I know my daughter and them can't come up then from Corpus, and I may as well GO AND HAVE A RELAXING TIME FOR SUNDAY AND MONDAY BEFORE NECK SURGERY! I am just worn completely out from all of it, and I AM MUCH TO YOUNG TO FEEL THIS DAMNED OLD! AS THE SONG GOES...,