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!

 

 

 

https://www.winstarworldcasino.com/

 

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....

Dealing with an Elderly Parent who also appears to have either Demenia or Alzheimer's when YOU are in Chronic Pain and have Chronic Illnesses.....

I took my Mom, (we have not been in almost a year due to both her and I being ill, so this was supposed to be an incredible trip!

Mom has been showing so MANY signs of either Dementia or Alzheimer's now for 2 years or so to me. Yet, the last 6 months have gotten terrible. I could write a book on just what I have been through due to her "diminishing" ability to "think, not be confused, not to almost burn the house down, to not be able to pay her bills, or even read her mail" and the list goes on and on... and remember I AM ALONE NOW, I AM CHRONICALLY ILL WITH SEVERAL AUTOIMMUNE ILLNESSES MYSELF, AND LIVE WITH HORRIBLE CHRONIC PAIN... so to have to also deal with some of these things with her some days is more than I can handle almost...

So, this is a bit about our overnight trip to the Casino at Winstar in OK....

(From Friday evening after getting home)
TOO WORN OUT, TO EXPLAIN all the HELL at the Casino the past two days, but yesterday ALL OF THE MACHINES WERE DOWN MOST OF THE DAY! TODAY MOM LOST ANOTHER credit card! I JUST HAD TO CALL ONE IN LAST WEEK SHE LOST here in town. So, today, she "discovers" she lost another one! Then she misplaced her cane about 10 TIMES at least... other than that, and HORRID nightmare traffic going especially but coming back also ROAD CONSTRUCTION EVERYWHERE!!! But, other that those things all in all, it was a GOOD TWO DAYS!!!! LOL!!! Oh and my kitchen was still standing when I got home. LOL... The pups were in the kitchen with their quilts, food, blankets, toys, water, etc... and actually I still had a house standing.... LOL!!!! More over the weekend, I am totally wiped OUT! But, I came home with only 20.00 LESS THAN what I went with... so I guess that is a good thing .....

(Today Saturday morning I continue)  .......
Those issues, and that we had not really gotten to play much at all on Thursday, (can you imagine how much money the Casino lost?) Their "main server" went down for some weird reason that does everything for all of the slot machines! In fact I sat down and played, and was going to switch machines, and it would not print me a ticket with my money on it... so then I began to notice ALL of the machines were "blinking" and people we saying the same thing I did!!!! So they really had one heck of a mess. And of course the day we decide to go of all times!!!!! I am so totally worn out today thought... Mom "lost" can her cane 5 times. Once I had to go and ask about it. And "lost and found" brought it to me, someone had turned it in... the other times "I" finally found it, once she could try and recall which machines she had been at. It was a nightmare... then when she found out her credit card was GONE... I just went nuts almost. Thank Goodness it was a "credit" card and not a debit card for her checking account. They may have been much worse. I had to get home first, find an old statement of hers, so I could even find where to call to cancel it... and then bring her information home and call them. Then she could not decide to eat at the Casino (we did not eat breakfast at first like usual) and just played thinking we would play an hour or two, then eat and leave. This was like 6:30AM or so... so by about 10AM, even I started getting hungry. The night before she would not even eat down in the Casino like we usually do. She wanted to get something and take it to the room... which was fine with me, but just weird. We went up "early" about 7:00PM to the room, and had gotten some really good fish and fries, much, much more than either of us could eat... we should have ordered just one and split it. So, I turned on the TV and was watching a movie... the next thing I know she is in the bed, with the extra blanket, already asleep by about 8:30PM or so. I could not believe it, and she never woke up at all, and usually she is up and down several times a night.. I finally decided to lay down also, so I changed and got in bed, and I woke up by 5AM on Friday and HOPED the slot machines were okay... But. I was already drinking a cup of coffee, I had made their in the room (which sucks) but I needed something... and was almost dressed by the time she was up moving, ready and packing. Like I said it was just strange everything she did. Heck, when we were going to the Casino, she sat and spent like an hour almost going back and forth through her purse. I thought maybe she lost something... but she was just "confused" I think about everything... then she kept saying we should be there already, and I said YES, if we had not been in stop and go traffic for about 35 or 40 miles or more off and on, we would have been there in about 2 hours... it took almost 3 and a half or more hours to just get there this time! Anyway, I parked and again she began going through her purse, and taking stuff in and out... and I finally asked her Mom have you forgotten something? She just said I cannot get it all organized, and then she had her "Players club card" in her hand, or lap and started saying she "lost it"... I looked down and said Mom it is right there in your lap..... anyway, I knew then it was not going to be a incredibly exciting trip... and one time about 2PM on Thursday, I told her to "SIT" and do NOT move from a certain spot... I was headed to get some tea, and go to the restroom, which was a long ways down, and then I told her I was going to try and check in to the room... so DO NOT MOVE! I get back and she is GONE! So, I thought gosh knows where the hell she is now... so I started looking, and finally spotted her rambling around, and I said WHY DID you MOVE??? She said well you were taking a long time... and I said I TOLD YOU, it is a MILE almost to walk from where we were to the HOTEL to check in! So, yes by the time I got there, got something to drink and went to the restroom it took a while, but why the hell you did not STAY where i said to... and she just looked at me... LOL! Anyway, it was okay and I had a wonderful time JUST BEING AWAY FOR A DAY OR SO AND A NIGHT, from the house, dogs, and just "Life".. BUT, I FEEL Mom will not be going back there again... if we do go to one, we may have to go to one of the smaller ones, who has already grown huge also... but she even said it, I just don't think I can go through this again, OR put YOU through all of it... and I told her Mom, it is fine, I did not mind and We BOTH needed to be away for a day and night... I told her I have my OFF days also... BUT now she really sees what I have been seeing for several years, and really bad the past 6 months... she goes to our PCP on the 22nd, and I am going to have a huge discussion with him... this is not just "old age", this is definitely more than that... I just PRAY it is not Alzheimer's.... Dementia is severe and bad enough, but the other, I watched my Grandfather go through that, and I surely do NOT want anyone to have to deal with Alzheimer's it is a horrid illness for sure..

I know It has been a couple of days.... from HELL! Life in the not so fast lane, as I plan to go to the Casino BY MYSELF ON THURSDAY! SHHHH! No Ones knows yet. :)

My Birthday is the 15th, and I am sick and tired of being at home, running errands, going to doctors, taking care of this, that and the other, and not getting a break, SO I MADE A RESERVATION (COMP ROOM0 Overnight at the Casino for Thursday night... could not get the 14th of course due to Valentine's Day and President's Day on the 15th....

Anyway, it has been one helluva weekend, Mom's phone has been OUT since last Thursday and it was the PHONE COMPANY'S FAULT and they did not fix it until ABOUT AN HOUR OR LESS AGO!!!! So, here she is 81 years old without a phone all weekend, well 5 days at least, so guess who had to go check on her everyday all weekend, and that is just the half of it.

I face my neck cervical possibly on Feb 18th, which is about the time I hoped for... right after my birthday!


Here are a few new pics of the fur-kids... the older one Bubba does NOT LIKE sweaters, even though he is so cold all the time, so it was a bit of a chore to put his on.,

I thought I would share a few with you....

#HAWMC - WEGO Writers Challenge April 15th 2015 - Get Excited!

I find myself seeming to come back to some of the same things I've blogged about over the past couple of weeks.

I know for awhile and I still somewhat still do is get excited about getting to try a different medication for the Lupus/RA. I say that because if I am "trying out" a new one, that means whatever has been going on is just not working. Thus the change in medications. It is kind of exciting and scary at the same time.

Actually when I read articles about the latest in biosimilars, or new research happening, possibly a clinical trial showing promise, all of those make me thrilled that there is a possibility of a complete remission, maybe a cure, or a way to "prevent" many of the autoimmune illnesses. I feel like once we find "why" the inflammatory processes, the body attacking itself, and if we are getting these diseases and illnesses due to a heredity factor, or our own environmental issues, then that will lead to find how to put many other diseases or complete remission. How exciting is it to think if this is something a child in the uterus is already predisposed to, and someday we can "fix" that before they are ever born, would be something extremely spectacular.

On a more personal level of excitement, I always come to the "casino" part of my life. I love the idea of making the reservations, deciding what to wear, and everything that I do to get ready to go (especially overnight), is such a wonderful feeling. Once I am completed prepared, that morning we are leaving, usually pretty early, that first few miles across town, getting on the I-45 interstate gives me a kind of "anxious excitement" in ways. I am already looking so forward to that "McDonald's" where we always grab a quick breakfast. I know when we reach that point, being at our destination is just a few miles away.

I've always found that when you are planning something, whether it be a trip, for a day or more, or you are going to some type of special event, thus the anticipation of that is a thrill to me. Being able to have an article in our local paper about my advocacy, activism and Ambassador status also just gives me a very nice and thrilling moment. I know as soon as I open our local paper, and my article on one of the first few pages, usually the 2nd page, I feel pride, I feel I am giving out to the public, information that is vital to them.

Even planning a day shopping trip out of town with my Mom is always fun. I get excited when I find terrific bargains, and can "clean up" on certain items, whether it be clothing or something for the house, I am thrilled when I see just how MUCH I've SAVED!

WEGO Writers Challenge for April 2015

The Ever Spinning World of Lupus, RA, Sjogren's and All of the Hectic Life Things to be Done

Today, like many others I have so many decisions to make, things to do or not do and put off, things I want to do, albeit before our weather goes to heck in a hand basket as the saying goes, and so forth.

I feel here it is another Friday, the weekend almost here... by the way
                     HAPPY VALENTINE'S DAY TO ALL TOMORROW!

Hope you and your sweetheart have a wonderful day! Even if at the moment you may not have someone special to share the day with, share it with yourself and do something nice for YOU!

I have just found out that I have an opportunity to meet several of the ladies of the IFAA that I am also an Active Volunteer!They are going to DC also the same time I am for another non-profit. So, we are thinking rather than me fly out on Tuesday, which was going to be hard on me anyway by the time I land back in Dallas, then drive 70 miles home, and it will be around 10 pm ... and my night vision is not all that great. So, I could be more rested, plus come back earlier in the daytime, just after rush hour, so that would be awesome also!!! So, that is one of my decisions and I really need to make the change TODAY as far as my flight. We were thinking about going to the Casino on Sunday and maybe even spend the night. But, the weather is supposed to be just hideous. 100% chance of rain all the way there, and then even if we spent the night, the same on Monday. So, we may postpone that and go the following weekend, although it does not look much better right now.

I wanted to stay here at home today, and in fact gave up a chance to go ahead and have my hair trimmed, but I was a bit worn out, plus have my head spinning in about 30 directions. I NEED to begin getting more and more writing on my book completed. It seems there is something everyday that takes my mind away, so I am either gone physically doing something or I am mentally too tired by the time I can even get to the computer.

So, life goes on and on...  here is a post from Facebook I wrote talking about time, and just how quickly it passes you by....

Before things get to hectic! I have about 25 "irons in the fire" right now!:) I wanted to wish everyone a very nice Valentine's Day tomorrow! I happened to have "almost" been a Valentine's Baby. My birthday is Sunday on the 15th! Not really loving the fact I am "half-way" to 60... yuck that sounds old! Yet, I feel my "work" here is not completed thus I must accept the fact, the only way to be "here" on Earth and do what I love is to try my best to accept that each year will make me a bit older. I also hope that in with that age, I continue to "learn something new" every day, and my hopes are that I will be able to somewhat have a bit relief with the right medications from the Lupus, RA, Sjogren's and so forth. Even if it means surgery down the road on a couple of joints, if it keeps me up and on my feet, then I will be a happy camper. These years seem to have just flown by too quickly. Jim & I celebrate 10 years of marriage in April! It seems like yesterday we met on Alki across from Seattle, overlooking the "Sound" and all of the beauty that is there. I still miss it and always will. I seemed to be "healthier" there than any other place I've been to. Not sure if that was due to the weather and climate, or if I just had not gotten into the horrid symptoms of the autoimmune illnesses. Unfortunately, I had lost my job, right after Jim and I met. Actually I resigned. And that was really due to ongoing health problems, mainly Migraines and severe conjunctivitis. I could not get rid of the eye problems. Each time I would heal up, in a couple of days it would re-appear, and since it is so contagious, plus I would not have been able to do the type of work I was doing at the bank there, I began to miss lots of work due to health. Honestly, it was the STRESS of that job, and the two "supervisors" who were "witches" and that is putting it mildly. The stress each day of dealing with those two, along with the tedious realms of dealing with Real Estate Files, and all of the paperwork in them, the job was very, very stressful without having to deal with two backstabbing, back biting, lying women. They had been "friends" for many years, and had both worked there many years, thus they spent their time covering one another's butts... But that is past, I am back in TX now, in my hometown... and I've let go of the anger and bitterness that I first had right after having to resign. Later, in fact, I've become online friends with one of them. She was my direct supervisor, and since then she had a very bad car accident and bless her heart, dealing with lots of pain from the accident.... and the bank actually closed since I left I found out. Anyway, time has gone by much too quickly. My 1st Grandson was only about 5 weeks old when we arrived back here. He and now his younger brother are both in school. When I think about just how quickly life passes us by, it makes me want to make sure those I love, and I care for dearly, whether family, spouse, and friends... that I let them know. So, if you have a "special someone" then I wish you a very beautiful Valentine's Day together. If you are alone right now, then do something very special for yourself tomorrow!!! You can "love" yourself and show how much you do. Whether that means a special cup of coffee, a walk if it is pretty, buying that "something" that you've wanted and so forth... Enjoy! Don't let life pass you by.... as one of the songs in the country songs lists.... "No Time to Kill" by Clint Black... and then another one is about how quickly your child grows up, becomes a parent themselves, and goes on to have their own family, all within a breath's space... in the blink of a eye... time can pass you by... and as my favorite saying out of a song in fact goes... (the chorus that reads "When They Carve My Stone All They Need to Write on it... Living in A Moment You Would Die For" that is what I want on my Head Stone someday - the chorus of this song....
sung by

Ty Herndon

Living in A Moment

Well the world just lost two lonely people
The world just lost two broken hearts
The odds were against it but baby here we are
In our own little place in our own little corner
This old cold world just got a little warmer
For the rest of my life I'm gonna hold you in my arms
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
If you never get rich on what money can buy
It don't matter to me, I'll tell you why
I've got it all when I'm holding you this way
I'll live to love you, I'd die to keep you
Safe inside these arms that need you
I'll be loving you with the very last breath I take
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Ashes to ashes
Dust into dust
I'll lay beside you
Forever in love
And when they carve my stone all they'll need to write on it
Is 'Once lived a man who got all he ever wanted'
Tell me something, who could ask for more?
Than to be living in a moment, loving every minute
Tell me something, who could ask for more?
Than to be living in a moment you would die for
Living in a moment you would die for
Oh baby, I'm living in a moment I would die for
Oh, living in a moment I would die for

"Hectic Home" for the AAI Holidays???!!!

"Hectic Holidays For All of Us in a Foggy Brain Haze!"

ONE HECK OF A TYPICAL MONDAY MORNING! 50 plus things to do and I don't know where to begin first! With this being a holiday weekend, which for us as far as the "day" itself, is not all that much trouble. We are taking Mom and going over to Waxahachie to eat at the buffet there at Ryans'... and more than likely we are headed to Winstar for XMAS!!!! I have a new coupons for 2 nights if we wanted to stay in their NEWEST 500 room HOTEL!! I hear it is fabulous! ;) Of course that is a while away. That will depend on weather how all of us feel etc. If we do we can't go but 1 night. I would not leave my dogs but for one night alone. They already have separation anxiety if just one of us leaves for an hour. So one night with us gone is about all they can handle. Even at that it is gotten to where we have to keep them only in our kitchen. We started having issues about a year ago with them peeing where they are not supposed to. Both of both have been house broken for years and years. But, something went on with them a while ago, that every once in a while for no reason one of them will pee in the floor, like behind our sofa etc. I have tried everything, but they get better. Like now this past few weeks has been so much better. But sometimes they will start it and do that for weeks, and then they seem to stop again. So we just don't just in leaving them if we are both gone for an entire day or so with the run of the house anymore. We did for a very long time, until this issue came along. IN fact they have gotten a bit older and I hate going off even over night without one os us here. But, they are always very safe and my kitchen area is huge! So, they are not just crammed in a tiny spot. They have lots of room in my kitchen. Anyway, enough of my moaning and groaning... then either I am having a flare start, or I am just too stressed. I am just on overwhelm.. and I know all of us are. The holidays are an incredibly stressful time for everyone! Then when you are chronically ill, with Autoimmune Arthritic  illnesses such as RA, Lupus, Sjogren's, plus the other hundreds of these diseases & that includes those with chronic pain on top of the entire ordeal,  it puts our "stress" into a whole new category!!!  Then add on how your entire "schedule" gets all turned upside down. For instance, I have a "set" time everyday that I take my medications and eat something for "breakfast". Well that is after the 1ST ONE with all of the pills, as my husband says. Then I also have a set time or day of the week that I clean, mop, sweep, even water my plants, and so forth. Well, this past couple of weeks from all of the "added and unexpected stuff" as in weather change so dramatically, Mom and a medication issue, my computer crapping out on me, Jim and his shoulder still not well, I am not feeling ll that well myself, and the list of "extra and unexpected" just just hindering the "regular" one. Then I had gotten blown out of the water with the holidays so quickly upon us! I haven't written my annual "Christmas Letter", there is fudge to make;  fruitcake that needs to be made early so it takes up all of the flavors. That doesn't include the other one of many things I am just now thinking of, which is we usually make "goodies" that we either put in a basket or a decorative tin. WE take those on Christmas Eve to our close neighbors (about 6 homes) and have made that one of our traditions for Christmas! Then I JUST remembered (another THING forgotten due to my COMPUTER crapping out) is our ANNUAL Sleigh Bell by Wallace we order every year. Since the first Christmas we were together we started buying these sliver and gold sleigh bells made by Wallace Silversmith's. In fact last yesterday we "celebrated" 10 YEARS of them! In fact they added a little note inside the one last year about they saw the we had ordered from them every year.  Actually a store in Kent WA that we found the first Xmas called Silver Superstore. That year it was so late and almost Christmas by the time we found them, that we got the very last one they had for that year. So, now they email me about 2 months ahead of time as a reminder. Well, until a moment ago, I had forgotten that I had not ordered it yet. Som I just told Jim while we were standing on the front porch I needed to come in and order it before they rub out. Low and Behold in my inbox, there was a reminder for me so I would not forget to order it!!! Now call that "ESP" or not... anyway I sure as hack just ordered it! :) If we do NOTHING else we made a promise that we would ALWAYS get our Sleigh Bell no matter what. :)

So, as I make out my TO DO LISTS, and the LISTS to "remind" me about my lists... and that list to make sure I don't forget about all of the other lists... I realize that in "reality" I am going to have to take one breath at a time, do ONE thing at a time, and also "step" into these moments to know there is no way I can do it all. Either I need to "cut" some things down smaller, or less, possibly try to NOT do some things, and then NOT feel "guilty" because I could not do it all.

As much as I sure as heck (like EACH of you) want to think I am "super human" especially with all of my "bionic" parts, one would think I was Super Human... I am admit I'm not... no longer can I do it all, be it all, make EVERYONE happy all the time, and be able to go on and not stop to find out I am just worn to nothing and come into a huge flare. Which I fear I am having now. Between sudden cracks in the corners of my mouth, my throat soar, and feeling just out of it... I feel as if I am definitely 'flaring" .
So I remind YOU! PLEASE TAKE CARE OF YOU FIRST!!!! I know, I know, we hear it constantly... but if we don't we honestly not of help to anyone if we make ourselves ill. So, some times as difficult as it is to say NO... that two letter word needs to be a GRAND word in our vocabulary.


I close for now in saying, that we are super at all the things we DO get done! We are NOT a disappointment if we aren't able to do it all.

A "New" place called "Off the Cuff" on my Blog and the First Official Post on It!

I hope all of you have a had good past few days. If you have "missed" me, as I said on Facebook, then I am happy to know you did! LOL! If you didn't then that hurts my feelings a bit. ;)
                                                 

"Off The Cuff" 

As I wrote on FB, Mom and I were gone overnight to the Winstar in OK! By the way, if you have not been there, or have no idea about the place, well, it makes some of the casino's even in Vegas look tiny!!! It is supposed to be the Biggest Casino in the WORLD!!! And if it isn't they are trying their damn hard get there. It is well over 2 MILES to walk through it from one end to the other! You ca n imagine when you walk through the slots for hours and hours how much exercise you get! AND IF IT IS NOT big enough, they are adding yet ANOTHER hotel (They have 2 and a smaller motel), plus adding about another 100 or more slots. I just cannot fathom to tell you how large it is. I've been to Vegas and as far as the "casino" itself, I don't think any of them are as large.

Now, for one. I had an idea this morning (through all of the fog that is in my brain) that I would do something called "Off the Cuff" in my blog. Mainly I write about Autoimmune Arthritis, Sjogren's, Lupus, Chronic pain, illnesses and other AI diseases. I post all kinds of things from the latest information about treatments, articles from some of the foundations, and so forth. But, I also like to throw in some of the more "personal" pieces of me. I talk about my own illnesses, and treatments, plus all of the things that go along with them in life. I have always wanted to "help" others "see" that through my own experiences, they also can have a "good life", but NOT FEEL GUILTY about being "chronically ill". It is very difficult to go through life, with a daily illness and not have it "consume" you. I know, because I have to work everyday NOT to allow it to do so!

So, I wanted to say first of all, I am thrilled for everyone that makes an effort to come here. I hope that since I have given the blog a whole new look, and the way you can see it, that it will be much easier to read, and use. So, that is my first step. Bear with me, because I know I will be making more changes as I go. For one, I will be adding more URL's that pertain to the Autoimmune Arthritic Illnesses. Along with treatments, non-profits, places for you to get information on them and so forth. I am also adding other "blogs" that I enjoy. They are also about these illnesses, how they effect their lives, and they can help you understand some of the things in your own life that happens.

Okay, on this first "Off the Cuff" post….

Mom and I went to Winstar in OK, as I mentioned above. We left early Sunday morning, and drove arriving about 10 a.m. It is about a 2 and a half hour trip. So, at about an hour and 15 minutes of it, we have "our morning" stop every time we go. There is a "McDonald's" at the half way point we always stop and get our "breakfast"…. LOL!!! Usually it is the same. Biscuit and sausage or an English Muffin and sausage, plus coffee! We are "big spenders" as you can tell! It also gives me a moment to get out of the car, rest my legs etc, especially if I am doing all the driving.

From there of course as I said above the place is "Gianormous"… if that was a word! So, we have our particular door we park at, and as always that is our first stop. We were spending the night on "their dime" this time. Winstar had sent us free rooms for 2 nights, thus that is when we stay overnight. Which is better for me if Mom and I go alone. I don't get so tired out from driving both there and back the same day. Well, we played for hours and hours. In fact, I pulled out a $20.00 bill when we arrived. At 4:30 that afternoon, I STILL had my 20.00 plus some on a ticket! LOL! So, I was in good shape in that respect. It is just hard to believe how many people are there, and how huge the place is. Around 2:30 pm earlier I had went around to the hotel that is "attached" to the Casino. (They have a brand new 500 ROOM one behind it!), checked in so we didn't have to worry about that later. We didn't even go up to the room at that time. We went back to play, then ate around 7pm, and by 7:30, (I had pulled a stupid stunt and wore the "wrong" shoes this time), my feet were hurting so badly, I thought I was going to have to go barefooted to get the car, take it behind the casino to park at the hotel entrance, then let Mom out with the bags, parked it and then finally got back in.


  Anyway, needless to say, by the time I got up to the room, my feet were in such bad shape, my little toes were almost bleeding, and I had two "stone bruises" (like blood blisters) under my big toes. I had worn a pair of black dress heels that are a bit "platform". I have a brand new black and grey striped very long skirt I wore and needed those heels really to wear it. But fortunately I always take another pair of shoes, which I took my sandals so that way, I can wear those when I have my feet worn out! I know stupid, but I know you "girls" understand what I am saying. I so rarely "go out" like that, so when I do get to go, I want to be "dressed to the nine's"… So, for me it was a huge ordeal to get to dress up and wear those heels too. Of course I am paying the price for it, but still it was "partially" worth it… :)

Anyway, a couple of "odd" things that happened. First of all, we had already gotten to the room, had talked, changed clothes, and was watching television. Mom was already asleep, and I heard this "KNOCK!!" at our door. Well, I knew there should be no one knocking, and I looked out the peep hole, and saw no one. I just figured someone was at the wrong door by mistake, and went back to bed. Well, it happened 4 MORE times that night! Each time not a soul was there, that "I could see". There was no way I was going to open that door at all, and it was dead bolted and locked down, so I was not really worried. I guess I should have called the front desk, but it was wee hours of the morning and I just said to heck with it and went back to bed. The one thing I did realize is that our room was the first room out of the elevator as you began down that hallway. So, someone could knock, then just step around the corner so you could not see them, and maybe they thought if they knocked long enough someone would be stupid enough to answer. Plus even though the place is huge, I also know at times, Mom will even say, that sometimes a "guy" will be looking at me, and of course I don't see it. I DO watch my surroundings of course when we go alone, but as far as noticing someone "watching" me while we gamble I am not aware really, but she is. So, when we checked out yesterday morning I told them, and mentioned where we were as far as the elevator. I kind of got to thinking about it on the drive home, and felt like possibly someone noticed we were "alone", not had anyone with us, like Jim in other words. Maybe someone did happen to be watching and followed us. Then thought maybe I would be stupid enough to open the door if they knocked enough times. I thought about it because when we got in the elevator that night on the way up, a guy got in right behind us. He saw what floor I pushed, and when I asked him what floor, he say the same as we were on, the 11th. Well, at first it did not really bother me, but the guy just kind of acted "odd". Plus I don't recall seeing him go down "either" hallway… you could go left or right after you got off the elevators. Our room was just off to the right, by them. So, it dawned on me, he may have followed us from the Casino to the elevators. I was so tired and my feet hurt so badly, that I probably didn't think about it. I had left Mom in the lobby with our bags, and went to park the car. Stupid me, didn't think about just letting the valet park it. I was thinking I would get in the handicapped place and it would be close. Well, hell they were all taken of course, and I had to park a good ways off. But, I thought he may have seen me let Mom out and then followed us as we went up. Maybe not and maybe it was someone just being as ass. But, usually in a Hotel at a Casino, there aren't kids, and at that time of the night, people are either asleep or down stairs gambling, and why our room???
Needless to say, I did not get much sleep. Between the damned knocking, and my feet itching and burning… by 4:30 (my usual wake up time) I was up and trying to get a bit of coffee down me (which their coffee thing in the room sucks)… so we could go down to find breakfast. That was another thing. The Casino built another HUGE buffet. BUT, they actually closed the other one, which they need both. And the new one does NOT serve breakfast at all. Yet, not one soul in the casino could tell me where they serve breakfast! It was nuts. So, we went down and decided to just check out, get the car, put our bags in it, and then drive around to play. Well, low and behold, right across from the registration desk is a brand new restaurant, and a very nice one, with linen napkins and the whole nine yards. In fact I think one of the glass pieces they had was a "Chihuly" piece, and it was totally amazing! Anyway, we had a wonderful breakfast, I got the car, and we drove back around to the front of the casino where it was closer for us to get into it, and then leave when we got ready. The Hotel is SO FAR away from the front entrances of the casino, it takes something like 15 minutes just to walk back to it. Thus moving the car is definitely a must.
The other "odd" thing that happened was just terribly weird. Mom and I were playing and I turned around to see where the nearest place was to get a drink. I noticed two or three of the main casino guys that are on the floor to help with machines etc if something goes wrong. They were standing around this man, who had been playing on a machine to the right of me, across the way. They were really having one "serious" conversation it appeared, so I figured maybe the machine grabbed his ticket, or something like that. In fact, after I got up, got us some tea and came back, my machine "fouled" out and took my ticket and would not play either. I waited almost 45 minutes for someone to come fix it and that was after asking 4 times. Anyway, after these men talked to the guy playing for awhile, I noticed a "security guard" standing right there by this guy. He kept on playing and appeared to be the same machine, but that security guard did not leave his side. I even asked him if he could get someone to come help me, and the entire time the guy kept playing, but that guard stayed there. That was very strange. I never did figure it out. Anyway, just odd for sure.

We had again got over to the Casino EARLY by about 7:30 or a little after, so by 1:00 pm, I knew I had a drive ahead of me to come home, so I was about ready to leave. LOL, I think Mom would have stayed if I had said let's stay, but she does when she is NOT losing, and she is winning a little …:)

So, we walked past the "high rollers" room, one of several they have. This one is mainly $5.00 and $1.00 slots, and of course they have others with the $10.00 and up. Anyway, she wanted to go in and look around, so we did. She decided she wanted us to put a hundred dollar bill in one of the dollar ones and play it! So, we did. We played on several of the slots in that bank of dollar ones. She had so much fun doing that. LOL, of course we were not fortunate to win, but it was cool to watch her have a great time.

We left after that, and traffic was a bit heavy through Dallas, but we made it home without a scratch. I was glad to be home, and my two dogs were just so happy! They just would not leave my side. I was glad to see them and Jim. I had missed him and hated he did not get to go with us this time. He usually does, but he still has the neck and shoulder ordeal bothering him, plus he is trying to catch up on work also, so he decided to stay home this time.

Anyway, that was my Sunday and Monday, and it was good to get away; although when I get home, then I feel like I've been gone a month! It seems I am SO FAR BEHIND… with online stuff, my volunteer stuff, my blog, email, doing laundry, cleaning house and it never ends… and then I have not been to the market for my "monthly huge" bill of groceries, so I have got to get coupons in order to do that. I am so far behind on my "stockpile"! It sucks!!!!!

Also, one other thing. I may have mentioned my "lump" on my left lower abdomen several times. But, as I said, my brain fog is bad today. My brain is trying to swirl and take in about a million things I need to do, and I just can't get it all straight. I went of course to the PA, a sonogram, a Gynecologist, then back to the other PA in my PCP's office. She, the last PA, FINALLY found out I do have two hernia's… yes not just ONE, but TWO of them!!! The left one of course is what sent me to be looked at. Honestly, I really thought it might be a tumor. I have "stomach cancer and colon cancer" in the family, so I was kind of concerned. Then when the sonogram showed nothing, honestly it concerned me more! I have to see a surgeon and was supposed to go tomorrow. But, I am postponing it until next week. I've got so much to catch up with, and I can see him here in town on a Monday or FRiday, rather than having to travel out of town, which takes more of a day up. So, as I find out what the deal it I will let you know…

Okay, other than I am SORE, TIRED, and BRAIN DEAD… I am happy Mom and I spent the time together…

I'll get my head back on straight in a day or two…:)

Rhia


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