My Daughter's Birthday was the 18th - Such an Awesome Daughter I have! COPING WITH LUPUS, RA PAIN IN MY RIGHT THUMB, HANDS, WRISTS, LOWER BACK NECK, HELL OVER MY ENTIRE BODY! BUT, somehow WE MUST CONTINUE ON... AS I TOLD MY PUPS THIS MORNING, I CANNOT JUST QUIT & TAKE A TIME OUT!

Amanda looked like a tiny baby doll when she was born. She was only 1 and a half inches long, and weighed a tad over 7 pounds. I wanted a girl so badly, and from the moment I knew I was expecting her, I KNEW she was a girl.

My son, who was 5 years before her, was just a little blonde (cotton headed) as they used t say, and small too. He started Kindergarten like only a week after Amanda's was born. It was amazing to have one beginning school and a brand new one at home! I've always been thrilled they were 5 years apart in so many ways. Amanda and Jason remain close and have as always. He was always the "big brother" who could watch over her, and they later in high school knew a lot of the same people, so when Jason and her left to go out on a weekend night, I knew he would watch over her.


Yet, it seems like just yesterday they induced labor with her.  I didn't have the certain "hormone" to cause me to go into labor with either of them, so they had to induce with Jason, and they just planned on it with Amanda. Now this was BEFORE the sonograms, and knowing what the baby was before it was born etc. Sonograms were only done then if they suspect problems, so with a "normal pregnancy" that was just not something they did.

My best friend from High School Carrie and I were expecting within 2 weeks of one another. They told me Amanda would be somewhere around the very last of August, and Carrie's little girl RaeAnn was supposed to be like 2 weeks BEFORE Amanda... but alas Amanda made her entrance into the world a bit early on August 18th, and much to our surprise Carrie's pregnancy went over by two weeks and RaeAnn was born right after Amanda by about 10 days or so. I can recall Carrie being frustrated that hers didn't come as expected and I had Amanda a bit early. Carrier ate enough Mexican Food to feed Ennis back then!!!!LOL!!!!!! She would eat anything Mexican 3 meals a day, every day of the year..... and I really did not have many "real cravings' BUT I could NOT STAND the smell of bacon frying or Joy Lemon Dish Soap, both made me sick to my stomach and even after I had Amanda, for a year or so, I could not stand the smell of bacon frying... and I NEVER got over the Joy dish soap.. I hate that smell even today after 31 years!!!!

I wanted to share that with all of you, and let you know I am still painting on "house #2" trying to get over there daily and paint. I have decided to "try" and move in over there in October... but that probably means me having to hire some people to help me finish up the paint, putting the fence up,  & of course the "list" can be endless...mainly finishing the inside painting and getting the floors in "decent shape" which does mean also I have to have new linoleum or something like that laid in the kitchen dining room, small bath and right at the front door entrance.

Right now there is an "industrial type" of carpet in the kitchen and dining rooms that is of course glued down, so trying to save the dining room would be a mess. The kitchen already had linoleum under it at one time, and the bathroom is tiny but I also "may" have to have some plumbing work done in the bathroom. The pipes coming into the bath through the wall to the commode are "rusty" and already leak a tiny bit. I know that even that floor at one time had been wet enough that Dad had to have it enforced when they put in a new commode years and years ago. So, I figure with what water damage might have been there and then when Mom threw a washcloth down the toliet (after she got so "bad" with the dementia) and I had to call a plumber I tried at 1st to unstop it, not knowing it was a cloth in there, but she over ran it twice at least until I finally locked it down enough she could not open that door. By then she could not even walk to the toliet and had a potty chair by the bed, but it also done damage to the hardwood flooring in the hallway by the bathroom... I am going to just do the best with it because I will have a carpet runner to go into that hallway, so it won't be that noticeable anyway... but I also think that old sink needs to go and be replumbed, plus if it CAN BE DONE, I would like to break up that old iron tub (which so many houses built around the early 50's had those iron tubs, with the porcelain over them... so that tub has lost about all of the porcelain, plus I want a shower only, that I could just step into, and have one seat in it... BUT, to break up that old tub with that small bathroom is a freaking chore!!! We did it in this house, and put my "big honkin tub/sauna/shower" in it... and I still love it, BUT hell I use the shower, and nothing else really...

I cannot sit down into the tub really or a may never be able to get out, and with it just being me now, it is really way too large for now how it is used... it really is a shame, because one of my reasons, was to use the whirlpool, sauna etc... for my joints and muscles... but by the time I have had all of the surgeries, the strength it would take me to sit down in it, then try and get back up, well I would fear being here alone, and not able to get out.... I still love that huge shower, tub BUT ALSO, IT is insane to clean... I keep it mostly clean since it is just me now, and I spray it down with the Daily Shower Cleaner, which keeps it dry, and it keeps me from having to scrub the heck out of it so often BUT, it still has to be cleaned, and it's a job....

I have to literally get into it, to be able to clean it properly, then keeping the mold and mildew out of it, I keep diluted bleach that I put around the places because certain spots if they stay wet will get to be a mess to clean.... so it takes work to keep it clean and free from lots of germs and so forth....LOL My DOGS probably enjoy bathing in it more than I do..I can put them in there, they have plenty of room, and I have my shower nozzle that I use so they kind of get a massage, then I can have them almost dryed off completely before letting them out... so that way they don't slip on the hardwood floors when they get out... they used to chase each other after a shower, and one time Tazzy accidentally fell going around a corner, because her feet were still wet and she had a hip that hurt her for weeks... so I have to dry their feet before I let them out of the bathroom...

NOW AS FOR ME........  I AM TIRED, I FEEL LIKE I AM ALWAYS RUNNING BEHIND... I HAVE MORE PINK, BLUE AND YELLOW STICKIES IN FRONT OF ME THAT I CAN EVER GET FINISHED WITH... I AM STILL TRYING TO GET OVER THAT ONE SPRAINED ANKLE... I THOUGHT IT WAS BETTER, BUT OVER THE PAST TWO DAYS, AGAIN IT SWELLS LIKE A HUGE GOOSE EGG ON THE OUTSIDE, DOWN TO MY LITTLE TOE AND UP MY LEG A LITTLE... I thought it was better.... hahahaha...

 I should KNOW BETTER!!! I NEED to have my pain pump upped, but I also need to see my Rheumatologist... neither know (well my pain doctor found out yesterday) that Mom has passed away, and that NO I am NOT OKAY, BUT I'VE NOT HAD THE TIME NOR STAMINA TO DRIVE TO DALLAS FOR DOCTORS APPTS~~!!!! While Mom was so sick half the time I "forgot" my 3 boluses a day for my pain pump SO it still has more medication in it than it would have had I been using it as I usually do.... but AFTER WATCHING THE PAIN MY MOM WAS IN.... I kind of WENT NUMB WITH MY OWN PAIN I GUESS... even when I SPRAINED BOTH ANKLES THAT SUNDAY OF HER VISITATION, I REALLY DID NOT "FEEL" THE PAIN.... but I WAS IN SUCH A SURREAL, AND SHOCKING SPOT, I JUST FELT NOTHING... MY PAIN, EVEN THOUGH I HURT LIKE HELL, SEEMED NON IMPORTANT.... Thus my reasoning for putting off my own Pain issues....

I AM BEGINNING AGAIN NOW TO KNOW I NEED SURGERY ON MY NECK, I NEED MY PAIN PUMP UPPED, AND WE NEED TO CHANGE MY RA MEDICATION OR DO SOMETHING BUT I just do NOT have the STRENGTH NOR WHAT I FEEL THE TIME... to spend on those things... like a couple of weeks ago, my Chiweenie, Bubs, broke a front nail on a front paw off below the quick... well it was MY FAULT... I always DREAD TAKING HIM TO THE VET... he usually puts up a fight, and we have had to muzzle him one time before... so I HATE HAVING TO DO THAT... so his nails get longer than most women's before I take him... and again they were way too long, and then he limped around for over a week because of one broken so far down into below the quick.... I finally took him in, and the last two times I've held him, and let the assistant just talk to him, while the Vet cut his nails, and we didn't have to muzzle him and in fact he did great.... so I was grateful and am going to try and keep it up and get them cut before they get TOO LONG!!!!



ANYWAY, LIKE NOW, MY OWN PAIN IS HORRIBLE... BETWEEN MY RIGHT HAND, THUMB, WRIST, AND THOSE JOINTS BEING IS SWOLLEN, I CAN BARELY TYPE, MY FINGERS GO NUMB NOW, THEY HURT LIKE HELL, AND THEN MY NECK SHOULDER AND LOWER BACK JUST HURT SO BADLY... IT IS ALL I CAN DO TO SIT HERE AND TYPE...


YET, as I typed in my Title, we cannot just sit down, and take a "time out" for many reasons... it is up to ME, for things to get done... whether I DO IT MYSELF or I HIRE SOMEONE... somehow all of what needs to be done, are things that have to be done, no matter the illnesses, pain and so forth....

One of the guys that was two years older than me died this past week! He was only 58 years old! By just looking at Sammy, no one would have ever suspected he had any health issues... I'm not sure exactly what happened, but my feeling is that maybe he had some type of cancer....

So, we MUST LIVE EACH DAY, EACH HOUR, AND EACH MOMENT LIKE IT IS OUR LAST!!!!!

Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Am Torn to Shreds mentally and emotionally..... the Loss of a Dear Dear Bestest Friend my Puggy - Tazz!!!!

I can't begin to tell you that my bestest friend in my life my Puggy, my Tazzers, my Mo Mo she has several nicknames passed away this morning...I can't even bare the thought of losing something once again, I love more than life itself.... God promised me last night she would be okay... she seemed very weak yesterday and was acting like she was not feeling well at all, or even breathing late last night as she should.... I took her to the Vet and her blood work was "off"... so I am supposed to take her today for more labs.... last night, I held her in my arms and rocked her and sang the songs I always have sang to her and her brother Bubba.... and I did not sleep all night... I kept telling her that she would be okay today.... that God would heal her.... I cannot do this anymore.....I can't stand another broken heart.... why, why WHY was she taken away from me? Her, Bubs, and me were all together here and happy.... I can't understand why something like this happens, she never hurt anyone, and from the moment I saw her at 6 weeks old... and had to wait a week to get her... she needed her other shots.... and that was in Everett WA - she was the best Christmas present I could ever hope for or dream of.....life is just too cruel.... I don't want to live without her.... I love Bub's so much too, and he is also a light in my life.... but she was and is and always will be my baby girl... I can't even stand to move her... she is on my sofa in her favorite spot, wrapped in the blanket I bought for her the night I picked her up from the lady that sold her to me... I feel like pieces of me are dying also....

I just cannot even find the words to say how upset I am... and now my Mom's not feeling well, and has stomach issues and so on, that have been going on now for weeks... at first we thought we had a stomach bug, that had been going around... but that was at least 6 or 7 weeks ago... I am not all the way better, either... but my stomach is "weird" often just due to medications and so on.....

I did not get to post my RA Blog Wego post today,...I began writing it, went to check on my dear sweet Tazzers... I knew she was not well, and I was supposed to take her back today for more blood work.... and I prayed and prayed God would help her to hold on, or help her heal before it was too late..... I am worse than heartbroken and shattered at this moment......