Showing posts with label Mom. Show all posts
Showing posts with label Mom. Show all posts

Saturday, September 10, 2016

Grieving the Loss of a Loved One BEFORE they are no longer gone but you are a caretaker due to a chronic terminal illness...

I've been going through a really "odd" (pr what I felt was odd) kind of issue since Mom passed away in June. I kept telling others that I almost feel as if I am "still in shock" rather than in the "grieving process" and all these weeks and weeks, I kept "waiting" for those signs to appear, and they have in some ways...

yet I have felt angry and almost ashamed of myself, for "not showing" grief in losing Mom... daily now for weeks, I keep wanting to "call her" or run over to tell her something, and even though I am there almost everyday doing the remodeling, this feels different... then of course I realize no longer can I "talk with her here", call to see if she is okay, and usually have my own set of "life's issues" that I could talk to her about... 

well after much thought about it all, right now I am dealing with a great deal of almost feeling like "her life was dropped in my lap" kind of thing, but, I looked it up, and as I've mentioned, I had been "grieving" the loss of my Mom for months and months way before she was "bedridden"... 

and didn't know me, nor even where she was or who she was... I had that "grief" daily, from moment to moment, it was every changing, depending on what was going on at that time, or on that day... thus although it still sounds horrid, when she took that last breath, I felt at that moment "relief" for HER... no more suffering, hurting, crying, diapers, and lying in bed, she was finally "home" with Dad, and her family.... 

so here is one article I just read and decided I would post it...for weeks now I have felt like I am just "insane" yet what I've been through and am going through is all a part of the process...

Friday, July 8, 2016

Texas - And Violence too Close for Comfort just up the road, and an Officer from a Neighboring Town

It seems that no matter where we turn there is little peace on this Earth anymore. We continue to see more violence, more rage, more terrorism, whether from afar or from "home grown" people that sometimes I feel "give up" on the faith of humanity. I realize that ALL of us have a place in us that can "get to the place we have had more than we can take"... I've been there as far as illness, chronic pain, and then watching my own Mom pass away of something horrible that took her within just a few short months... actually weeks honestly. Yet, somewhere we MUST reach DEEPER within ourselves, and FARTHER into our own faith to know, that violence and harm to others is NOT the answer, it just makes things worse for everyone.... it's hard to fathom that "humans" can take the lives of other "humans" yet it is all around us, from small towns like mine to huge towns like Dallas and all over this nation and the world. Answers? None of us have really have "answers" other than trying to "hold onto" what we feel is right from wrong, and what we have been promised by our own "Higherpower"... Lord bless and look down upon all of those families, friends, and co-workers that have lost so much... this will impact many, many right here in our own community, as well as others.... May they find some "peace and understanding" through the wake of such horrific violence.

Saturday, June 4, 2016

Moving Forward.... thru the realms of Life, where it takes us, chronic pain, family, and all of the things we "learn" along the way..... Alzheimer's

They did not give Morphine due to Mom being allergic to Codeine, but Dilaudid instead and since I know more about that medication, I am glad they chose it. They also gave me "Ativan" that I can give her, and then a combination of meds in a "cream" that goes at the pulse points for nausea, agitation, and to assist in breathing... so far, Mom has been able to swallow just fine, but they gave me the Atropine because it may get to where she does have problems swallowing, and that is what is another part of the "comfort medications". I am able to give her the Norco just as before, she now has really stopped eating all together, which as they said was "normal"... and she still gets a dry mouth of course the medications themselves can do that, so she will drink of all things it is so funny, Mom never drank any type of "Cola's", or carbonated drinks... but when this first began, she wanted nothing but Diet Dr. Pepper, Sprite Zero, and sometimes Diet Pepsi.... 

so if she does tell me she wants a drink it is usually the Sprite Zero, with some water in it, so it is not so "strong" with the carbonation. I changed her a couple of hours ago, and got her all on clean and dry sheets, and a dry night shirt, and her diapers on, then they gave me some cream I put on the heels where the blisters were... actually the nurse told me unless they are "weeping", to allow them to "dry"... rather than put anything on them... so really the one heel is the only one needing much care... 

most of the other places where her skin is so thin, and like me, she has very huge places that appear almost like "blood blisters" but flat, and not blisters, just more broken blood vessels... and the Lupus causes me to have those... I told her that I had to look at those "new" types of diapers, because it has been so long since I used diapers on my 2 kids I was out of practice... LOL... and I told her that I wished we were at the Casino, and that everyone here online, and around town that knows tells me to say hello and tell her they are praying for her... but I try my best NOT to disturb her... 

I realize she "hurts" all over... and just even trying to roll her gently from one side to the other to change a sheet, diaper etc.. just plain hurts... so I give her the pain drops, and meds, and then I try to clean her good, but not put her through any more misery of being tossed and turned in the bed... and today she said "ouch" a few times, but I would tell her it was me, and that I was trying to do a "better job" that the aide as far as not making her hurt worse... and by the time I had her dry, cleaned up and gave her meds, she was asleep and peaceful again.... I don't know whether I should be "posting" this stuff or not, BUT it "helps" me honestly... have some way to "say" the feelings and emotions.... and then I am not so "frazzled" - thus the posts help.... my back is so messed up, I could sit in my floor, scream, cry, and gripe due to the intense burning in my hips and down both legs.... 

I may have to go to my pain doctor if I can next week and have him "up" my pain pump meds until I can get into surgery.... but we shall see.... As I said in another post, I continue to "learn" a great deal from those from Hospice, and I have a high and new found respect for the people that I have been in contact with so far.... they are definitely Angels... what a difficult "job"... that has to be.... Anyway, back to the sofa for me... I have to try and get my back to calm down a bit... I did not sleep well at all last night, and had severe nightmares all night long... so I am drained......

Friday, April 29, 2016

Being Totally "Beaten down" by Life... or Lack of Quality of Life...

I TRULY feel HORRIBLE for even thinking this, but I am so disgusted, upset, resentful, and feel as if I have been a "prisoner" on a short leash for so long now.... 1st is was my own illnesses, surgeries, and all that came with the Lupus, RA, Sjogren's and so forth. Then, next was Jim's car accident. WE both felt like VICTIMS and felt TIED DOWN due to how severe all of his injuries were, and HOW FOR A LONG WHILE HE WAS UNABLE TO DO ANYTHING... and NOW IT IS THIS NIGHTMARE WITH MY MOM... I am trying to REMEMBER this is NOT her, and it is NOT HER FAULT, BUT TODAY I am just plain and totally "resentful" of what has been thrown in my lap... She talked to me as if I were a low life today, she accused me of "taking stuff" and Moving stuff... and told me "when she got home" some woman has messed up the whole house"... and I asked her "where she had been" and then she says < Well, at home!" and then I say well Mom where are you now? And she said "HELL I don't know"...

wherever you or some other "woman" takes me.... I "knew" sooner or later" due to her personality being much like my Grandfather's, that the "derogatory" part of her personality (for lack at this moment for a better term" would probably "rear its ugly head at me"... and today it did... and she was telling the "aid" today, that "whomever that woman is" she is mean to me... in other words, she has NO CLUE who I was, and furthermore, that I was her daughter, and I have been nothing but busting my ass to help her! She wants to refuse any help, she does not want the aid to help her shower, etc... she thinks she should never have to "shower"...

and I found drinking glasses in drawers in the kitchen, and things all spread around, that were NOT like that when I left yesterday! She does NOT recall getting up when no one is there, and she digs through stuff, and puts stuff where it does not belong, and then accuses the "women" or "woman" who comes by all the time of moving stuff and making a mess.... In less than 4 weeks she lost 6 more pounds! She just will "barely" eat when I am there, and even though the fridge IS FULL of things to eat, she will NOT get anything out and eat it... then she said it had been "days" since anyone came by to check on her... PLUS here I have this awesome opportunity to go to the Conference in Nashville, and again - I am a "prisoner" and can't even leave for a weekend!

 I am so fed up, and I have told her, and the nurse that comes by also told me himself, when the doctor finds out she is not eating, losing more weight than ever, will not get up and help her own self, will not do the work with the PT, and so forth... he is going to want her in a nursing home... I've cut the gas off to the heater, because she tried to turn it on... I am almost ready to turn it off to the stove.... I found out by "watching her" today... that it is NOT that she does NOT want to watch TV, she has no clue how to turn it on, or change channels... because I finally turned it on today, to make sure the new antenna was working correctly, and I could tell her has no clue how to use the remote.... anyway I apologize for seeming "hateful"... but I am "tired of" my own life always "on hold" because of something, either my own health, now this issue with her or whatever it is, comes along and rips out the parts of my own life I want to live.... I am 56 years old, and after already suffering a heart attack at 40, then being told I would NOT survive another, so I moved away to Seattle, in order to get away from whom was "killing me" in a matter of speaking, only to have other illnesses bog me down, surgeries one after the other, then the massive and horrid car accident with Jim, and now this with Mom... I have survived a 2nd MI when I was 50... but you know I would LIKE TO HAVE SOME KIND OF LIFE, before I am TOO old or TOO ILL to enjoy it! Sorry all of you, I am just in a spot of being knocked down that damned mountain, and feeling battered and bruised... and I am not sure I can climb again....

Tuesday, March 22, 2016


Now as if things are not screwed up enough!!!! MOM TOOK ALL HE MEDICATION MORNING MEDICATIONS THAT WERE SUPPOSED TO BE THROUGH FRIDAY! all of them already! THEN ONLY TOOK "PARTS" OF THE BEDTIME MEDS... WHEN I asked her why she just looked at me and said well it is so simple I really do not know why I can't "get it"????? Then she DID NOT TELL ME that her legs and ankles were VERY SWOLLEN... now this is since Sunday - well she did NOT take her LASIX all week last week, because she did not take ANY meds last week... and SHE said Well they were "worse" they are better now... BULL, SHE is playing with "fire"... the entire reason for being SO CAREFUL about swelling is TOO much FLUID can cause that "heart valve" to act up and then she is facing open HEART SURGERY!!! So, I MADE HER TAKE ANOTHER LASIX and watched her and then increased it over the next 5 days to 2 every other day, which is what her heart doctor wanted her to do in the 1st place!!!!! 

Then "THEY ARE BACK!!!!!!!!!!!" I was in the back yard a few days ago, and in the back forty lot over some of the "weeds" I saw lots of what I thought were those damned "May Flies" which I hate swarming... BUT NO, THANK goodness I went back today and looked, because earlier I was out there with the weed eater trying to knock down some of the tall weeks before the city freaks and wants me to pay to have someone come and mow it with a tractor... 

BUT I stopped and decided I had enough room to spray weed killer as usual and should knock it down enough, it is all weeds and no grass... BUT, I LOOKED BACK AT THAT OLD BUS again a bit later AND IT'S THOSE DAMNED HONEY BEES!!!! WE "RAN" THEM OFF WE THOUGHT' They built in the neighbors walls... and he almost never got rid of them and NOW THEY BUILT OR ARE BUILDING BACK IN THE DAMNED OLD PIECE OF BUS ON MY BACK FORTY!!! I have been wanting to get someone to haul it and a bunch of old dead trees and tree limbs out, but finding the money is not easy... SO CRAP I have to do something... I just hope I can find someone who will come and "move that damned hive".... what a mess... 

Bub's is better, and I still never "found" what bit or stung him, and he is still not all the way over it, but all of it is looking much better, and I can tell he feels much better... what a damned nightmare... I do not honestly know what to do about Mom... and then I find out something about my car lease that I am really pissed about, but I will "save" that story until I do some research..... anyway, things suck even worse, and I am worn out.... and sick and tired of it all..... does it ever end!!!????

Monday, February 8, 2016

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....

Friday, February 5, 2016

So Much Going On and Not Feeling Like Dealing or Coping - Life with Invisible Illnesses, Communication with Family, Friends, & Daily Living

I realize i have not posted in a couple of days. I feel badly about that. I know without new material, new posts, new information, that my audience gets "bored" with my blog.. mmm, new name 'Bored With My Blog?" Just a pun there, a spin on words.

Portions of me have been in a strange state of mind. I have many decisions to make for the upcoming couple of months, and since I am not feeling the best, albeit many do not know that, I've found myself wandering both physically and mentally around like a lost soul in a vast desert, seeing nothing but sand in each direction... the grains gritty, my thirst parched, and longing for a "drink" of sanity that will point me in the direction of an oasis of decisions.

I am having to deal with deciding when to have my cervical neck surgery. I opted for right after my birthday which is the 15th! Yes, almost a Valentine's Baby, so guess who gets flowers, cute stuffed animals, candy and the like a day "after" Valentines Day? In a way, it is nice, because I usually get more simply because much of it is marked down by 50%!

So, after two calls over a weeks time to my orthopedic surgeons assistant, she finally calls me yesterday. My surgery is tentatively set for Feb 18th. So, it may or may not be on that exact day, depending on what they get set up.

Things have been so crazy here, between my Mom's health issues, and running her back and forth to the doctors, plus my own problems that for months and months I dealt with just to get 'well enough" to have surgery. Thank goodness, I believe the abscesses have healed finally. And my pain pump surgery is over, and my new one is in place.

But, the invisibility of these illnesses, does NOT mean we can just say "okay, i just don't feel good, I am not going to the market, paying bills, taking the pups to the Vet, cleaning house, washing the car, taking out the trash, cooking, cleaning... not when it is just YOU, and your two fur-kids! And "they" are surely NOT going to run to the market, or run errands and clean house! :) Although at times I sure wished they could.

So, I trudge on, day comes, things need to be done, and then evening comes, I fix dinner, have to clean up afterwards, and then on the sofa for a movie, and here lately I seem to be ready to sleep much earlier than usual. Last night all three of us, myself, Bub's and the newest addition "Peanut"... well less the nuts, since he was just neutered! LOL! Yes, maybe a bad pun, but I still thought it was too funny not to say... "Sometimes Peanut acts and feels like a nut, sometimes he don't, Peanut, used to have his nuts, now he don't" - Okay the story behind that is with each pup over the past 15 years or so, that I get, I find some new little "tune" that becomes their song... and I sing it to them every once in a while... and bless their hearts, Tazzy, even though she has passed away, and I miss her so much, Bub's that is getting up older now and having his own issues with hip problems, and arthritis, and of course the new "Holy Terrier" Peanut, now each have their songs....

These past two days have been very difficult for me, in every way. I have not felt well, nothing I can put a finger on, just overwhelmed with fatigue, no energy, pain always pain, and just a general feeling that I have of not feeling like myself... even in a mental way.... foggy, and not wanting to deal with daily life.

I felt I would just pop down on the sofa yesterday and not do anything, yet it was trash day, of course I had to feed the dogs, water them, change their paper, straighten up the house, and I was COLD all day long. I rarely have those days, but I could NOT get warm... no matter how I tried, or what I did, I was COLD! And it was cold ALL Day Long! No Matter what I did I could not warm up. Finally, about 4PM, I took a hot shower, and after that I kept pretty warm... today it is a cold morning, but hopefully the sun is out and it will warm up. Our issues here are the wind makes it colder also these past few days.

Again, though this morning, I wake up, not honestly wanting to do anything. I am still just worn out like I have ran a marathon that was 20 miles or more... and my body is trying to recuperate. Yet, if I were to get dressed and go to town to some of our store's, NO ONE would know the difference. They would not "tell" that I am totally wiped out, and unless my brain fog causes me to do something silly in the store, the "invisible" part of Lupus, RA, Chronic Pain, and so much more, are difficult to explain. I feel guilty if I am NOT up and doing things. But, I feel lousy when I have to make myself get up and do things...

I think people tend to see me as lazy, or lack of want to, or whatever. And I do that to myself also. I want to think that I am just being lazy, if I sit down and not move forward with all I need to move forward with.

There is lots going on with my Mom, that has been quite concerned. I had seen the signs of Dementia or worse, Alzheimer's in her now for over 2 years... little by little, but now with these new symptoms, and worsening signs, of forgetfulness, loss of time, loss of what day it is, shuffling her feet, rather than picking them up and walking, loss of much weight, and having issues even getting her to eat, and being just overly concerned about her "bodily functions".... and talking about those day after day... forgetting checks in bills, not understanding no matter how plainly I have it typed out, how to take her medications, she cannot "get it"... losing her credit card earlier this week, she just has so many numbers of things that point to some of one of these illnesses... there is lots more, leaving a pot on the stove until it burned.... Those things are also wearing me down. I need to make a decision on where to go and take her for testing, and how to go about handling that, along with my own issues of needing surgery, that is very important to my own well being.

There are some person issues I am dealing with also. I have a friend that wants to do a "video chat" possibly once a week. Which is a cool idea, and we would make it, send it to the other, like that. Yet, for me, I never know when I will be "dressed" enough to make a chat, and what I will have to say... there maybe lots to say, like sometimes when I email, and then there maybe times, that things are just the same old thing... I guess I will have to pick a day, I go to run errands, that is when I am usually dressed and have my makeup on etc... and make a list of the things I want to say... like I said it's a great idea, and I want to do it, but for me, it maybe something that takes me a bit more "getting ready for" than for some.

I have felt that these "invisible illnesses" as of lately, have caused ME to be "invisible". I feel as if others to do SEE ME, or HEAR ME... that I am "not be heard as to what I am trying to get over to them. This is meaning friends, doctors, family, everyone. I sometimes feel as if I need to go on top of my roof and shout dammit LISTEN! What I have to say is important!

I realize whether ill or not ill, those moment arise, and give us this innate feeling that no one really values our opinions, our feelings, and what WE think in the world...

Stress, too busy being busy, too many hours of running here, there and yonder... attempting to be ALL to ALL... and it is impossible for anyone just about, but especially those who are chronically ill.

I TRULY FEEL that if I DO NOT MAKE MYSELF get UP each morning, MAKE MYSELF feed the dogs, water them, fix me some hot tea, or fat free hot chocolate, take out the trash, and do my "daily things" then I would NOT get up at all.... I have to "force" myself at times to cook something more nutricious rather than eating whatever is the quickest. It may mean making it ahead earlier in the day, so I do not have to try and make it later, when I am getting too tired in the evening to do much cooking. And I believe since many of us, like myself take so MANY daily medications, it changes our tastes in foods, our appetites, and things I used to LOVE to eat, I no longer can even stand the thought of.

I also know for a fact, once the Sjogren's took all of my teeth from me, and I had to deal with a full set of dentures, THEY have definitely had a dramatic effect on the taste of food. I either can't taste it, or it tastes totally different than before, an even though I may not put them in, and try to eat dinner, the food just does not have the same flavor as it did, before that horrid illness took every tooth in my mouth away.

So, not only the illnesses, but change your taste, along with the medications... all of it combined, can have a definite change on your entire system...

I laugh at myself because I also want strange things, like cravings...something salty is one of them... also I may "think" I want something so badly, yet once I get it, or fix it, I just cannot fathom eating it at that moment! Now the next day, it may totally change, but once I have cooked it, often I really prefer not to eat it.

I find myself lately not wanting to communicate with anyone.. I don't feel like saying much on the phone, in person, online, in emails... and I'm not sure why. Maybe it is due to I feel as if I am telling the same old stuff over and over again. Or that I think I am whining and griping if someone asks me how I am doing, or feeling,

I know I am READY FOR WARMER WEATHER, even though I know we need some COLD weather to drive away fleas, fire ants, and other pests... that will be driving us all nuts if we don't have enough cold to get rid of them... I have already put out one round of granules for all of those pests. I know with this strange weather, we could see flea's , fire ants will run rampant, along with all of the other large number of pests we deal with in TX every spring and summer.

Those are other things that no matter how lousy you feel, especially if you don't have anyone else to help out. I even completely overhauled my lawn mower last year. Yet, I don't have the strength in my arms to pull the rope hard enough to start it... hopefully my neighbor will help. He used to be really good about mowing my lawn... but he began to act odd last summer, in fact him and his entire family kind of shunned me for some reason, so I HOPE he still intends on helping with the lawn, or at the least doing the mowing.       

So, as the story of my life goes, in the middle of this, I have to go over to Mom's. Her hone had been "busy" since yesterday evening, and I thought she had probably left it on as she does sometimes... well this morning by 10AM it was still not working, so I had to dress and go over. To find out, it is NOT working, and she did not even know it. So, I had called her Wednesday evening, and Lord knows when it stopped. I tried everything, and none of the stuff in the house appeared to be an issue. I looked out in the box on the house, and I think they have a wire they never replaced, and it appeared to be possibly frayed or causing the problem. So, I had to call the phone company, put in a work order, and be told they cannot do anything until MONDAY... so now she is without a phone, and as I told her, if she had something come up, take my numbers to her neighbors, she has several or call 911 if it is an emergency... and that I would check on her over the weekend... then she tells me that she fell in the front yard this week on the way back from the mailbox... she again is NOT taking her medications correctly, and I am sure that is part of the problem... so she said she needed a "walker"... the cane was not working well... partially because she does not use it enough, and does not take it where she needs it, and said that is why she is not going to church... so I go, buy a walker, take a bunch of magazines, a piece of cake, some newspapers for her, plus an updated medication list... and I ring the doorbell twice, and knock and she does not answer... so again, probably in bed... where she stays too much lately... so I LEAVE A NOTE, IN THE MAILBOX, AND UNDER THE FRONT STORM DOOR, and tell her stuff is on the back porch including her mail... of course I cannot call, due to the phone issue, but I will go over again tomorrow... I am not going back again tonight, I have once again spent most of my day on her stuff... which is fine, but it leaves me NOT finishing my post, and I am tired now after running around all day....

So, I close this with... INVISIBLE ILLNESSES SUCK... and THEY MAKE YOU TIRED, AND PISSED OFF, AND RUIN YOUR PLANS... and on and on.... and no matter how much you fight them, and life, they tend to get the best of most of us.....


Sunday, January 3, 2016

A Few New Photo's for the "New Year" - My Wedding Dress (that I deicded to Wash myself 10 years old), pics of the fur-kids, of my Christmas Wreath, & a few other Misc....

A few of my Daughter and Grandkids, My 13 Sleigh Bell Christmas Ornaments, one for every year now since 2004, My Fur-kids, Peanut and Bub's, My Wedding Dress I decided to wash myself (I wore it 10 years ago last April 6th 2005) one of my Mom and more....

Sunday, September 13, 2015

Thoughts as I ponder my own Health, Lupus, RA, Sjogren's, those that "harm" us, those that have all disregard for human life.. the nation and world in vast and deep trouble...

I put up a couple of new pics earlier on Facebook and I wanted to post them here, and then write about some stuff I've been wanting to write about... lots to do with my own life journey, this river of all too often the "unknown"... we  ... none of us know what the next moment holds... we are not meant to... thus each breath leads to another "surprise" of life... this below is about dealing with illnesses, chronic in nature... Lupus, RA, Heart problems, Sjogrens' the severe pain of them, they tend to try and consume your life, mind, heart and soul... and how then a relationship, although we never know either can literally "suck" the life out of you... before you even know what has happened.... So, I wish each of you, a good life, be safe, love one another every day, every moment... do NOT let a moment pass by that you don't try and make someone else, yourself, or even your "four legged" friends... (I speak of my pups) that you don't love them, and tell them often... 
We never know if we will be shot going down an Interstate, or bombed and terrorized in a church, place to eat, on a job.,, in a market... WE have MANY, MANY Horrible people that spend their life "killing others" and never bat an eye doing it... it is all around, and we hear, read and see is way too much... our NATION and OUR WORLD are in much need of PRAYER, PEACE, AND HARMONY!!! ... YET, too many do not have any regard for human life... I just don't and cannot fathom that they do that in the name of their "god" or whomever they worship.... 
After the SEVERAL what feels like MONTHS the past weeks... I needed to hear something "positive"   I have been so totally frustrated with "life" in general... mainly of course illnesses and medical issues. I am still not "completely convinced about this leg being "not infected... but the surgeon I went to has been practicing for many, many years... so I must have faith that he knows what he is looking at. I learned a few things from him by asking questions, especially about MRSA, and what to look for and so on. I am not sure why that even though this lump was "abscessed" is it not "grow" anything. You would assume it being "infected, which is what I "assume" abscess is, that there would be some type of staph, strep, or something that would grow out of that culture. He took two... because I actually had two pockets of abscess from what he said, one not very deep, but the other quite deep into the thigh. I am still taking extremely good care of it, and not going anywhere without it covered and I am still actually covering it with gauze. For one, with the two pups, and then jumping to see me, especially when I sit down in the evenings on the sofa to watch a = movie with the, they both are pawing at me, or putting their heads on my legs etc.. vying for my attention,.... talk about UNCONDITIONAL LOVE!!! That is what I get from Bub's and Tazzy.... they love me in spite of being ill so much, being not able to sit with them every moment of the day LOL, if I have my makeup on or not, no matter how I am dressed... they love me... too bad I never found a "spouse" that was so committed to me... Yes, I did say that...I am so "fed up" at the moment with people that "commit" themselves supposedly 110% and vow to be there no matter what, yet when the tough times roll around, guess what... GONE... on 60 SECONDS! I was totally "committed" to each and every relationship where I said and vowed to do that. But, as we know it takes TWO!!! I could not do "all the work" and the other party not want to work at it at all... and in fact at the moment I am quite livid in the fact, that I've been deceived, lied to, cheated on, and you name it, and I know that even my neighbors who have known me now 8 years must have been "told" I was the problem!!! They barely even "look" at me... and they were here all the time "before" the other party left for Seattle... so I can't help but think someone said things that make them think I "threw" it all away etc... when I never did such... but after trying to work on it for almost 13 YEARS... between my own health, my Mom, and ALL that I need to do... things that I gave up, in order to make a relationship last, I am SICK of GIVING, and someone else doing all of the TAKING!!!! Plus I am TOO OLD and TOO much water has flown under the bridge, that I shall NEVER "beg" anyone to be with me, or stay, and so forth... I am too disgusted with all of it, to even truly have the stamina to "fight" for someone to be here. I am just as well off, even though I am lonely at times, the pups as I said love me, no matter what... and I've vowed to NEVER again get into any "long term" anything... And no one say "Oh, you will feel differently later..." NO! I won't... I am going to spend the time that I "wasted" on committing to someone who just took full advantage of my tenacity... and put all of that COMMTMENT back into getting myself as well as possible, writing my (or may I say finishing") my 3rd book and getting it published, along with more much more energy into my blog... which is doing fairly well... and into my activist and advocacy work... those things are where my true nature, my passion, my love, and what I feel my life is truly about... and no more will I forego those things to try and make someone else happy.. if they cannot be happy themselves, then I certainly can't make them happy .... I am off to post this on my blog... do a few things I've got to catch up on... I spent yesterday outside a great deal... washed and got most of my car waxed... and got some of the dead limbs and trees down that my neighbor "left" rather than take down as he said he would before he built that UGLY HUGE MONSTROUS WHAT IS SUPPOSED TO BE A GARAGE... it is bigger than my house! So, I've got lots of things I have to do for my home and I am already too vested in it to not finish what I began... so as the next moment, hour, day, week, and hopefully YEARS flow... my hopes are to "do" exactly what I feel my true "calling and purpose" here is.....

Sunday, August 16, 2015

Ongoing Lupus, RA, trying to cope with Loss of my Aunt, and all that is so complex when you are fighting a chronic illness/pain issue, dealing with stress, surgeries, and grief

Life can be so awesome one moment, and tragic the next. My Aunt Geri, Moms last living sibling, her younger sister passed away yesterday afternoon after battling a rare form of stomach/intestinal cancer now for a long while. I believe it has been at least 3 years, if I am remembering correctly. She went through lots of chemo therapy, but we knew for one it was not operable, and two the doctors had already said that it was terminal. Yet, for the Grace of God, she lived to see her first Great Grand daughter born, and then some. She lives up in Mesquite, so we don't have any details at the moment. Even though her family, along with my Mom and I knew it was coming, you are never really prepared for something like this. Especially with Mom and her lower back issues, and all we have been through and are still dealing with, plus my own issues with my back, needing surgery, then things getting complicated with me contracting cellulitis, no 3 weeks of antibiotics later and the lump remains on my thigh under the skin. When I saw the doctor Friday, he said if this last round of antibiotics does not show signs of going away this, then I will need to see a surgeon, have the lump removed, and then they can determine exactly what it is. It has now gone from being about the size of a silver dollar, kind of a bit hard, but never feverish, red, and nothing ever burst through the skin, like you would assume cellulitis would. That is kind of the reason why he and myself are baffled as to why it remains. It has now turned into being about the size of a quarter but very hard, sore to the touch, plus I developed another lump on my right leg, that is almost in that same spot, just on top of my right thigh, and almost exactly across from the other one. It is not nearly as large, about the size of a pencil eraser, but sore to the touch, and like the other one pretty hard, and does not move around under the skin. At the very first, before I even knew what it was, it was a bit softer, and it kind of moved around underneath the skin when I would try to check out how large it was. Then of course, I had ran out of Orencia - now I guess it has been about 4 to 5 weeks ago. I had issues getting the insurance to get off their butts.. I needed a new script from the doctor, which they received, so I thought they were going to fill it and send the meds to me as usual. Well, after going another week, no call and no medication, I called them. I found out yes, they had the new script, and even though i had already asked for it to be refilled before they got the new one, they did not fill it. Instead they were waiting on me to call back and ask for it to be shipped. In the meantime the lump formed, all of the other stuff came up with both Mom and myself, so I have not had any Orencia in weeks. I feared my last couple of injections may have been contaminated somehow and caused the cellulitis. I am supposed to be on Xeljanz anyway, did the blood work and labs, then the TB lab test came back indecisive, thus I still have not been able to have the chest X ray ... I was hoping to do that last week, then I came down with the stomach bug, and I am still not completely over something with my stomach. I am still somewhat nauseated, which I contribute to the heat, already being sick, a headache, all of the stress about my Mom, my own things such as the back surgery, and so forth. So, now my fingers on both hands, and in between my fingers are swollen, my knuckles really don't want to work correctly and I am having hell with the RA in both hands and wrists. I have always had some issues with them, but more in both thumbs. I have not been able to get the swelling down, and just trying to open a bottle of coke or anything is so painful, plus my grip is really bad right now... and then my darned keyboard that I love... it is solar, seems to be going out on me, thus this one sucks and does not even allow me to do a hyphen or quotation mark, and It is really irking me to no end...PLEASE continue to keep my Mom, and the family in your thoughts and prayers... as I had posted before, this is Moms last sibling, she has lost both parents, a brother, a sister in law... and most of the family on both my Grandfather and Grandmothers side.. of course we lost Dad in 2005... and am sure that brings up things such as that for Mom anyway... I appreciate each of you... I am thinking about trying to get ready for church. I missed this past two weeks because of being so sick and was going to try and go this morning... but I am still dealing with a bit of stomach issues, and with all going on, I HAVE to go and have my pain pump refilled tomorrow, I have no choice. We waited this time until THE DAY my PTM shows the refill date to be. For some reason it almost falls every time where I have to have it filled too early, for one reason or the other... so it worked out to be on the day this time.... more later...

I appreciate your prayers, and yes mine are with you also... this is just proving to be "another one of those tough years".... I had so hoped that 2015, would bring more Light, Hope and Positive things to our lives. Yet, once again so many of us are trying to cope with all types of chronic illnesses, pain, mental and emotional pain also, the loss of loved ones, and this entire nation in general... I can barely stand to watch or look at the news anymore. It is almost too depressing to see just how horrid people can be. From harming their own family, friends, to those who just do NOT care about humanity... the greed, corruption, the back biting, back stabbing... those that get rich off of our own misfortunes, from lack of care from insurance companies, to the extremely ridiculous prices of medications, even generics now are soaring out of the roof... and people have to almost feel as of they always have to look over their shoulder, whether in a huge city, or a small town... so many as I said above that have no remorse, or regard for human life. Even all of the "election" stuff... it just almost makes me physically sick to my stomach at the thought of just about anyone running for President of our nation next year and anyone of those possibly winning... we are already in a terrible condition, not just nationally, but internationally... countries going bankrupt... people not able to find jobs to support their families... and the amount of ever growing medical issues... our water, air, soil... all polluted with Lord knows what... or whether you will walk out of your local market, or church, or movie theater and be taken down by some "home grown terrorist"... I despise even the sound of that... hard for me to fathom any human especially in this great nation being "home grown to terrorize, and kill others... the insanity grows daily.... we have the weight of our own issues on our shoulders, along with the weight of this entire nation and world, as far as the safety, security, and welfare of all of us.. again thank you all for your continued thoughts and prayers... my Mom and I, along with my kids and family appreciate each of you..

Thursday, August 6, 2015

Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping

Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...

Sunday, April 26, 2015

#HAWMC WEGO Health's Writer's Challenge "How to "Smile" & Try and Feel Better Even Though Things are NOT as They Seem! How to Handle a "Bad Day"

I will attest, WEGO Health and the bunch, you have came up this entire month with some incredible "prompts"!

This is truly a great one also. 5 Tips to overcome" a Bad Day"!

I would venture to say (I guess at the moment I speak for myself), having chronic illnesses and Chronic Pain is almost something "negative" we live with daily. Of course some days are worse than others. We have our "memorable days". Those that we wished we could bottle up, and be able to open and have a sense of remembering them in touch, sight, smell, feel and thought! Of course all of us have those great memories. The idea of truly being able to capture them "hook, line and sinker" as the old saying goes could make them even more capable of giving over to the times when things feel like you are on top of the ever shaking mountain, and could conquer the world.

For me, I usually know very quickly, if I am going to have "one of those days." When I arise from bed, and everything hurts, I realize I have 3 or 4 doctors appointments, things my Mom needs done in that next few days, it is not sunny outside, OR it is HUMID and MUGGY; which brings on even more pain, that is when I feel like crawling under my bed, with my "granny blanket" as I call my favorite blanket with the silk on the edges, and hide for at least 24 hours, maybe more.

So, when things start off like that, I head to Facebook first, to find something "positive", "
funny, strange, thoughtful or whatever some friends have posted, that make me smile because they just have that ability. For instance, I have a dear friend who has a very busy
Fibromyalgia group. She seems to always know, when I need something to smile about. So, often times when it feels like I am "drenched from the fog of a lousy day" she has sent a "bundle of virtual flowers" and a small note to say "I totally get it and I understand". So, my first tip for "one of those days" is to "look" for something positive. If you have a FB page with friends who tend to find either positive things, pretty cards, or something funny to post, go and see if they have posted something. Usually if you scroll through the new posts, you will find one that just "fits" to make things feel a bit better. My next thing is that rather than allow all of that "garbage" to float around in my mind, I write down a list of what has to be done! Whether it is for just that one day, or for the next few very busy ones ahead, by writing them down on a list (I suggest literal paper and your favorite pen) rather than typing them out, making that list helps to put things into perspective. I feel I can better handle it all. I kind of purged it out of my thoughts by writing it on paper with my favorite pen (by the way, no one touches my favorite pen)! So, my 2nd way to make it a bit better is to write a list of what needs to be done, so you can kind of rid your mind of all of the stuff that is floating around almost eating at you.

My next thing I try to do, is take a look at the local weather. As silly as that sounds, once I have down a list of what needs to be done etc, then I want to know what to expect if I am having to go out and have things to take care of outside the house, the weather sometimes really makes a difference. Right now it is "thunderstorm, hail, high wind and possible tornado" time in Texas. So, if there is a 90 percent chance of thunderstorms, that are probably involving hail and high winds, then I decide what things I can do here at home done, and avoid going out in terrible weather. I know the day is only going to be worse, if I am fearing my new vehicle being hailed on, or going somewhere and having blinding, drenching rain, lightening and thunder all around. So, my 3rd thing to make for a better day is to KNOW what to expect weather wise. The weather makes such a difference "physically speaking" also. If I am already hurting, stiff, and feel lousy, then I see the weather has a high humidity, a barometric pressure that is nuts one way or the other, then I can "expect" the pain and stiffness, and "blame it on the weather" or at least partially know for sure, it is NOT helping.

Writing seems to be my way of truly ridding myself of the gunk in life that causes me great grief. So, my 4th idea is usually to write in my blog about all that is really eating at me, or post on Facebook, and ask my friends to keep me in their thoughts that day. Sometimes I just write and not post it. I hold onto it for a bit, to see if I really want to just rain pain down on everyone else. At times a post where I am griping, whining, fussing, and just letting it all out, is perfect for my Facebook page. When I can tell that others are also having a crappy day, pain wise or whatever, empathy goes a long way. Now, when I say empathy, I mean those people that REALLY understand what you are going through. Not the "acquaintances" that don't get it, because they are either not chronically ill, or have chronic pain. But, those friends who are often in the trenches of hell in illness, right along beside you. Or if you see there are other dear friends that are really having one of those days also, then I try and send a post to help lift them up. That empathy, can work both ways. If you are able to put aside your stuff for a bit, and tell someone else you totally understand, and you wished you could fix it, make it go away, or be better you would. Sending a little picture of something cute, or pretty, flowers, kids, beautiful scenery, anything that is positive and just can cut through that bad stuff for a moment, always helps to make me see, "I am NOT the only one having a heck of a day". So, writing and then also uplifting someone else can help me to put my own stuff into a better perspective.

Sometimes for me, since I love to bake, if things are really horrible, and I want to jump off the Earth, I go and bake something wonderful. Getting everything out of my face and out of my mind, and baking does that for me, can turn a bad day into "okay, I can deal". Then there are times, that I will just think to myself, pain or not, fatigue or not, do something constructive. I in fact have been having one of "those days" now for about 2 WEEKS! So, yesterday, as bad as I felt, I cleaned my house. I "swiffered" my hardwood floors, then I mopped them with my hardwood floor cleaner that smells like lemons. I got out my duster, sprayed some lemon dusting spray" on it, and went over pictures on the wall, around base boards, under the bed where all of those dust bunnies hide, and over some of my furniture etc. I am not talking a huge spring clean, but one where you can do just enough, that gives you a sense of you accomplished something in spite of the junk, and take a smell of just how "clean" and fresh your home smells. That lemon smell, or any type of citrus, just makes everything to me smell like a fresh spring and summer day. Plus, I could visibly "see" that my effort paid off. Things looked neater, cleaner, and I moved around stiffness, pain and all, which helped to take my mind off the pain, the stiffness and I got some exercise with it also.

Those are 5 that come to mind at first. Sometimes I just have to get out, and go walk. I may spend a half hour trapesing up and down my long driveway, ranting and raving to myself, about how life had just wronged me that day. Again, any way I can "purge" my mind of "the stuff the binds me" helps to turn a bad outlook around. Some days I take a drive to where my Dad is buried. He has been gone now 10 years, which seems impossible, but I go out there, and in all of the quiet, peace, the sea of colors with flowers everywhere, and I can quietly "talk" to Dad, there comes some peace of mind.  I may take new flowers to put out on his grave and my Grandparents. I enjoy doing that, so it helps to turn the day around also. When things are just ALL out of sorts, and I am dropping stuff, spilling, stuff, hurting badly, and everything I touch seems to turn into a huge mess, I give up, go set on the sofa with my two pups, one on each side, and chill to watch a movie. Having them beside me, and getting my thoughts off of all of the bad stuff, also puts me in a place of, "Okay now I can handle some of this stuff". Maybe I have some kind of small treat. A cookie I love, or a bite or two of a cake, pie, or something I've baked. Others I may go outside, hopefully with my gardening gloves and literally just pull the weeds, and stray grass from around my flowers. That helps to take my mind off of things.

The very best thing I can do, when it's possible, it try and just get completely away for a day or overnight. If I've had some really busy weeks, things have just been too hectic, too full of illness, doctors, medications, fighting with insurance, and there seems to be no end, then I get my Mom, and we go for at least a day visit, usually to the Casino in Oklahoma. We usually have "complimentary" rooms for a night or two. So, if time permits an overnight stay. As I had said before, being able to just totally get out of the house, of out of town, and away from all of the stuff that can just put you into overload, as soon as I pull into that Casino parking lot, and enter the doors, everything else seems so small in comparison. We are not much as far as gamblers, and usually play the "penny" slots, and my Mom likes the 25 cent slots. But, it is the people, we watch others and see how excited they are, or when you here the cheer from one of the tables, and know someone just did well, or just to relax and eat at one of their great eating places, and walk, walk and walk. The one we go to usually is now once again I believe considered the "largest casino in the world". I can attest to the fact, that a lap or two around the entire casino area in itself, not including the three huge hotels, and then the smaller one they call "The Inn", can give you all the exercise you need for a day or so. Plus there are no clocks, no windows, and with all of the sounds, lights, people, music and noises, everything else pales in comparison. I leave there still kind of in a "trance" almost. Even though it is only a day or one overnight trip, it can smooth the "edges" off of life's rigid times.

It will be interesting to read how others rid themselves of a bad day! I know WEGO Health keeps me busy, and they help to take my mind off of the "bad days" also.

Thursday, April 2, 2015

The Realms of My Own Happiness #HAWMC

Check out my true happiness and happy moments below!  #HAWMC

Happiness for each and everyone in this nation, and on the planet for that matter, can vary from person to person, from day to day, and even from moment to moment under some circumstances.

It is a very interesting question that can lead to you learning a great deal about a person by what truly brings out those "giddy" feelings of being totally "in bliss"; in a complete and whole state of all being fine in your little corner of the world.

For me, of course there are different things or ideas that bring me that feeling of "glory", of wanting to smile at the world, and hold onto that "key" situation, moment, happening that brought so much joyful glee to my soul.

If I had to pick one thing, it would be having a true inner feeling of accomplishment. I mean having one of those days, weeks, and so forth that I feel I am totally finished with certain things, that I have completed the "list of tasks" that I set out to do, say for that day or week. Within that time frame, for instance, I started out with an extremely huge amount of items that really needed to be done. Whether it means, a blog post I've really wanted to write, and write well that is also received well, I've taken care of a number of things that needed to be completed at home; such as possibly baking a special cake and it turns out perfect, errands that go by quickly, allowing me to free up some time, having ALL of my household "honey do" lists (when I say lists I mean our own at home along with my Mom's usual list), and all goes as planned, no accidental trip ups, nothing else to go wrong, plans that have been made being completed, and all seems in a place of peace. That would include my own advocacy work also. It in itself gives me those feelings of happiness in the fact again, I've "conquered" the battle ahead, forged through, and completed it. I see also that others have benefited from my own ideas, and I've also been able to spread my own happiness with others. When I find that state of mind, that state of feeling whole and complete, accomplished, with major and minor items, than I am in harmony with myself. I then can justify a "day off" to the Casino with a "daughter and Mom" overnight stay. Or I can justify that I've done a great job, having freed up time to make a trip over to another town, our county seat, and shopping, possibly grabbing lunch, and finding a huge bargain on an item of clothing that I needed, or had been wanting. So, the means is the end result for me, happiness.

When I can take a look backward in a certain day, week or weeks, and watch what my jobs, errands, cooking cleaning, blogging, writing, doing my activist work all come together in a neat package that I feel I could tie a ribbon around and say,
"Wow"! I really did get so much done, had a pretty "stress less" time doing all of it, and I've given others a reason to also say, "Thank you", "Job well done", or I (we) appreciate your good attitude and accomplishment.

Although there are other things such as being able to play my drums for a short while, getting out of the house and going for a "girls night out" with Mom to the Winstar in OK, being asked to participate in something special, such as the "WEGO Activist Writer's Challenge Month", or any type of event or happening that involves me more into my activist, advocate and Ambassador dealings also gives me a sense of accomplishment, thus happiness is always the end result.

Rhia Steele
April 2nd, 2015

p.s. When I speak of accomplishment; along with the completion of a long list of things to be done, I also mean being able to not take to be concerned over my health. I am at least for a small while, free of many of the main symptoms of my illnesses have calmed and quieted down long enough for me to do those things, which brings me bliss in with all I set out to do and get done...


Tuesday, March 24, 2015

A Bit OF "Personal" Goings ON I wanted to share....

In between all of this, I have not mentioned that I got a call from Mom last night. Her last living sibling, her sister, who is about 3 years younger than Mom, has been battling "terminal" stomach cancer for a long while. Well, my Uncle called Mom and told her that my Aunt now has Hospice coming in all the time. I feel from what he said she does not have much longer. So, this week is so nuts for myself and Mom, that I hope and pray my Aunt Geri makes it till Thursday. They live in Mesquite up by Dallas and it is not far from my Pain Doctor. I have an appt with him on Thursday afternoon. So, our plans are to go up and visit my Aunt for a bit, then go on over to my doctors for my appt. This is a horribly busy week for me, and I am already feeling run down. I had the CT Scan done earlier this morning, and now we shall see what that has to say. I fear it will not "show enough"... which as stupid as this sounds, I hope it DOES show what the heck is causing all of my added pain!!! My pain doctor is going to "up" my medication in my pump, so we need to know where the freaking pain is coming from. I feel it could be from "compression fractures" due to my osteoporosis being so severe. But, I am also having major pain in both hips... and then down the back and sometimes front of my legs, all the way to my heels. So, please keep my Aunt, My Mom and our family in your prayers. This is my Mom's last "close" family member, besides myself and my two kids. So, she has lost my Dad, both her parents, and then her brother and sister in law. I know she is taking this much harder than she lets on. I am worried about her too... she kept repeating herself and asking me the same questions over and over today when I dropped by, so I know she is just upset, plus I feel she may have some "dementia" herself. Both my Grandfather, he had Alzheimer's and my Grandmother had dementia... so it runs in her family... also my daughter and her husband and kids are really going through a tough time right now.... more on the level of a job situation, and has to do with the oil business. Her hubby has worked for this company for 10 years or more... and there is lots going on for them also... so I would really appreciate your positive thoughts our way...



Of course, everything always is either feast or famine and we don't realize at times when something either keeps us "home" rather than going where we feel we should be, or having to be some place and you never expected that either. I've been waxing and waning now for months with this "new" type of almost at times unbearable pain. But, this is my hips, my lower back, then down my legs almost into my heels. It seems to be worse on my feet, or if I stand or walk a bit more than around the house. Yet, now I notice if I sit here at my computer in my chair, I also begin to hurt and I have to get up and walk away... so it is almost damned if I do, and damned if I don't.... I shall update my post as things happen.... until then keep all of us in your thoughts and prayers.... Rhia

Monday, January 13, 2014

IFAA is Pleased to Announce A 2nd "Blog Leader" Danielle Tipton in an Online "Chat"!!

 International Foundation of Autoimmune Arthritis Diseases represents YOU, I, and EVERYONE that are plagued with these horrid, still a great deal misunderstood. 

I am so pleased to "introduce one of our next "Blog Leaders", Danielle Tipton! Being the Mother of two children that suffer from Juvenile Arthritis! As she blogs about Zachary and Emily, you shall get a small glimpse of how difficult it must be to have ONE child with this disease!!! I just cannot fathom how she does it all with two chronic ill kids. Her fight is an extremely personal one, I would say. So, please join as she tells her "caretaker" and Mom's story, on January 14th, 2014 at 8:30 pm (ET).

Sunday, December 22, 2013

Blogging My "Real" Life as an Autoimmune Arthritis "Victim"

Some May find my "Blog" a bit Different, so I want to give more of "me" to you... 

I realize that my blog may be a bit "rough around the edges" at times. I would much rather tell it like it is daily in my life. I prefer not to "sugar coat" daily living with autoimmune arthritis, chronic pain, and health issues that almost control my every waking minute!

So, rather than try to sit here, and find ways to give people a look at what myself and my family go through in reality. Doing that to me, is giving you, as another victim of these horrid illnesses a chance to know it is "okay" to be angry, upset, have bad days, say what you feel, not sugar coat your own reality, not have to try and hide the fact that your life is also just a mess at times because these illnesses overtake every step you make.

When you have a flare, nothing is "nice". Everything "sucks". Life is truly Hell! So, I could write about my medications, or find anything else to sit here and say, but that would not be what I need to give those who are following me a "false sense" of the days when you feel like you've been run over my a train! Times when you are on your sofa, or in bed, wishing you could have a break from pain, fatigue, shingles, mouth ulcers, rashes, stomach issues, kidney problems, medications that cause side effects, and this list goes on and on.

When these Autoimmune Diseases decide to enter your life, nothing, and I mean NOTHING is the same!!! You have to "adjust" your life in all ways. There are things you can't do sometimes. Like go out with the girls shopping, or meet the guys after work for a beer. Family get togethers, may find you smack middle in a horrible flare, or worn down from a new infusion, thus you feel guilty yet you feel like you will just have to sit this one out, (probably more like lay this one out). Your "normal" routine of life is completely turned upside down. Often you wake up with pain, and stiffness, that makes you have to take additional time to get up and get going. You find yourself slower at everything. It once took me about half an hour to get dressed to go somewhere. Now I better start at the very LEAST 2 hours ahead of time. Sometimes more than that, depending how I feel that day. You may not have the strength to do laundry, vacuum, dust, clean the bathroom, and make a fabulous dinner. More than likely if you get a couple of things done, and a meal on the table, that is a "good day". Shopping becomes a living nightmare. If you have a huge market or are going to a large store such as "Wally World" by the time you get in from the parking lot, you feel as if you walked a mile. Then if you are truly shopping with an entire list of things, that means "hours" of going through that humongous store!!! Then if no one is with you, that means taking that entire basket full to your vehicle, loading your purchase into your vehicle, and then trying to put a basket somewhere hoping one of their places for baskets is close!!! Plus, I bet many of you have this happen... I have a "disabled parking" plackard. My orthopedic surgeon wanted me to have one when I went through all of those knee replacements, then just all of the other illnesses, shoulder replacement, neck surgery... so I have one.
If you are not absolutely limping, have a crutch, or in some way look "disabled" boy are there the "looks" that you get from others!!! Thus the business about you do not look "disabled" or sick! Now I am one that uses mine sometimes, and at other times I park in a regular spot. If I am alone, and I am there to buy a large bill of groceries, or I am in a flare, not well, weather truly bad, I use mine. But if my husband's with me, or I am feeling okay etc... and especially if there is only one left, then I just ry to park in a normal spot so someone else can use it.

There are so many ways our lives are different. Some of those differences are just almost too difficult to deal with. Vacations you may miss, your hobbies that you used to love. I have a dear friend who loves sports. She used to play baseball, softball, and loved so many sports, yet RA has damaged her wrist and hand, thus that ended her ever playing ball, or other sports she so loves again. I hear story after story. For me, things such as running, snow skiing, mowing my lawn and doing yard work is out of the question. Bless my neighbors heart, he sees I've bought plants, or need to weed the flower beds, or mow, and he insists on doing all of it, and never wants to take a dime for helping. But I know he and his wife and two kids have a difficult time making ends meet, so I always give him money and tell him it is "for the kids"... LOL Then he will take it. :)

Sometimes we see family and friends all but disappear from our lives. It could be for several reasons. One might be there are those that just don't do well around someone who is "chronically" ill. Not in a bad way, but they can't take watching you in pain and suffering. So, they tend to not be around as much as they may have been. Others are just "busy". Since you have "slowed" down, and they are still in that "run, run run" mode, they don't want to be slowed down due to your illness. It sounds horrible but I know it's true. Others just fear the entire ordeal. Either they "fear" it is contagious (sounds ridiculous, but I had someone ask me if it was), or they fear it will cause them to be in a "mental anguish" if they see you in a state of illness. Some are in disbelief that you are that sick. Some family and friends are in "denial". They feel you are making all of it up. They feel it is just like, okay so your knees hurt, or your wrists hurt, well others have "arthritis" & they are up and doing fine. Some think you are a hypochondriac. And that if you would just stop all of those "harmful medications" and take vitamins, eat "right, exercise,  you would "feel better". Or there are those that every thing they see online or on the Television they think it is what you need! My Mom is bad about that? She doesn't sleep, so she watches those stupid "info-mericals" all night. Then when I go over to her house, she has all of these names of rubs, pills, etc. that should "help me". So, I have to come home, get online, prove to her the stuff is pure "quackery" and let her know none of it will help me, nor anyone else! Bless her heart, she is still in that "zone" due to her age, that every thing she sees, hears, reads, she totally thinks it is the truth! She gets phone calls from sales telemarketers constantly. She used to listen to them6, and believe every word they said. I had to put a "no solicitors" sign on her front door. Again she was constantly bombarded with people trying to "pave her driveway", or "insurance her water pipes", or "save her money on her Electric bill".

Speaking of my Mom. I am here to help her. I am an only child, thus I feel it is my responsibility since my Dad passed away in 2005 from complications of a knee replacement. She was and still is in many ways completely clueless about the world. Even small things like using a "debit" card, or putting gas in her car, calling in a prescription refill & putting it in the "automated system". She would not even learn how to use a DVD player we bought her. Dad did it all. Bill paying, handling money and investments, from putting gas in the car, to mowing the lawn, or taking care of just about any and everything. Which was great, BUT he NEVER taught Mom how to do any of it!!! So, when he passed away, it was total chaos here. We did move here, from Seattle, so we both would be close enough to help her. Of course I was already in need of several surgeries, so my first couple of years here were spent in the operating room and recovering. I helped her until I finally got my total disability rewarded, then it I could finally get to the doctors I needed to get to. At the time though I had not gotten the "autoimmune arthritis" diagnosis. It became apparent as the orthopedic surgeon was in my knees, shoulders, and so forth that this was not some regular "osteoarthritis", there was much more there in damage than it could have done so quickly and so early in my life. It was not long after a couple of surgeries on my shoulder and both knees, that my PCP put it all together and diagnosed the "autoimmune arthritic" illnesses. I began to have all types of symptoms.

Back to Mom now that I've given you a bit of "history" about her. So, I also have to do many things for her. It is not usually a huge issue, but there are days, or even weeks that I am busy enough, or have a flare, that trying to take care of "me", and then trying to take care of the house, and then all of her things going on, becomes almost overwhelming. You would not believe the mess that I had to go through with her insurance and the surgery center to get her surgery bill paid correctly! I spent over 6 months trying to get the to "code" the surgery correctly so the insurance would pay. I was treated like trash, I was spoken to like I was an idiot, I was "lied" to, because for 3 months I was told the "supervisor" had to handle it, and she was "out" with surgery. It was all a bunch of bull. I even went out there face to face and they basically said I was wrong, and I needed to just leave. That was in front of all the people in the waiting area! Well, I knew that the orthopedic surgeon did have his own personal funds in the center. Several of our doctors got together and opened it, with another company's help. So. I went to the "big boys". I wrote a letter explaining ALL of it. I had names, dates, what they said, etc. and I told it all. I took it to my doctor's office. About 2 days later, not only did I get a call from my doctor, I got a call from the head gentleman over the entire center, with a HUGE apology!!!!! They were "grafling" at my feet, trying to make amends for the stupidity and ignorance of their "staff" the worked with filing insurance claims. Plus not only was Mom one of the patients that had the same insurance and they had tried to say they owed money that they didn't owe either. The point of me talking about this, IS because all of that took my time up, and lots of it. Even when I was home, ill and certainly not feeling like talking to those "morons", I did it, because it had to be done.

I realize that I certainly not the ONLY HUMAN on this Earth with some type of chronic illness/pain. I also have come to a real eye opener. That is we have a tremendous amount of our population all over the WORLD suffering from Autoimmune Arthritic Diseases!!! And in bringing those facts into the entire realm of this blog post, they also are subject to losing friends, relatives, not having a care taker, or they are a "care taker" for a family member or even possibly a close friend!

So, how do we "balance" the situations? We NEVER know when a flare or symptoms are going to pop up. We may feel great in the morning and have shingles, fatigue, pain, or any number of problems within hours. So, it is almost impossible to try and "estimate" how much or how little you will have the "physical" ability to do. The ONLY way I can do things, is try to make arrangements ahead of time. But, if somethings happens to me, or I am ill, I try to have an "alternative" plan ready. Fortunately, up until about 6 weeks ago, my husband can "step in" and take Mom to the doctor, or run an errand, or whatever she might need, he can handle it.

Of course as "Rhia's Law" might have it, my husband has been in terrible pain. Between going to a clinic and having a MRI, that shows the pain in his shoulder is coming from his neck. Well, I can certainly relate. Same Story with my last surgery. Almost my entire cervical spine was a mess. I had a 4 level discectomy, fusion and 2 replacement discs. So, I totally understand his situation. But, now my "caretaker" is out of pocket. I've had to basically "buck up" and pull not only My "Weight", but HIS and MOM'S also. Now he is in bed with some type of horrible flu, bronchitis or something. It happened suddenly night before last, and I pray I don't get it. I've disinfected everything in this house 10 times! And I am staying as far away as I can. I fear if I catch what he has, I'll be in the hospital with my immune system as it is. I've already been exposed to more than I care to think about having to be at clinics several times with my husband and Mom.

So, WE (WE - as in ALL of US with AUTOIMMUNE ARTHRITIC DISEASES) can and do have a great many "mountains" to climb. We also know about those deep valley's. They can take you in so quickly and put you right down at the foot of the mountain you just climbed up. Of course we also have "rewards" in the sense of the term when it comes to "us", "we" when the time comes for us to assist those like ourselves into a direction of wellness!!! When we use our voices, social media, writing, blogging, sharing, volunteering; ALL of those things are divine intervention that shall lead to better and quicker diagnosis, much more aggressive and earlier treatments, that then can HALT some or much of the damage these diseases do!!! It is "too late" for me. I have so much "damage" that even though we are trying to aggressively work on it, I already have most of my joints either replaced, and the others will probably have to be, hopefully not, but it is a good possibility I face that in my future.

BUT, until the moment I can no longer type (so I will find a program I can speak into and it will type for me), my heart, my soul, and my mind is set on the GOAL of HELPING others! Standing up with other like minded wonderful people that also share in my heart's goal!!! Through our struggle, and trepidations. we have found STRENGTH today and we stand United in our goals to change the face of Autoimmune Arthritis Diseases forever!

So, this is much of "my life"... day to day... and now the part here at the last is the very best. It is my new opportunity I've found with the IFAA, as an Active Volunteer. I've also been able to be able to give my own story to WEGO when I was invited to be on a panel. My blogging shall also continue to be not only here but on the IFAA's blog site. And with the upcoming WAAD14!!!! there shall be AMAZING THINGS FOR EVERYONE TO GET INTO THE Online CONVENTION in early 2014!!! There will be more upcoming information as we get closer to it! So, I'll post more when I know details... Take care of YOU!!!! Then you can help others....

Tuesday, November 12, 2013

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…:)


If you care to see how huge this place is: