Showing posts with label caretakers. Show all posts
Showing posts with label caretakers. Show all posts

Wednesday, October 5, 2016

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, May 17, 2016

My Mom nd the Physical Toll This Horrid Disease has taken upon her in every way.....

 This photo I took Today May 7th, 2016 of her.

This photo I took at Christmas 2015 of her.

For those that do not know, this lady was able to do her own shopping for the most part, cleaning, cooking, and just getting out of the house when she wanted not but about 7 or 8 months ago... she went from 150 pounds to she weighs around 114 pounds now... so it is not just the mental and cognitive changes, it effects someone in every way possible... it is hard to fathom she is the same person, My Mom.... and that is sad... she usually does not know who I am, nor does she realize she is in her own home.

Saturday, May 7, 2016

Another Week of Horror, severe pain, trying to BE A CARETAKER TO MOM, when I NEED a CARETAKER RIGHT NOW ALMOST MYSELF, LIFE, AND what it decides to pitch at us!

Once again things are not well with my Mom nor Myself. I found her in the floor again yesterday around noon time. I actually think she may have not "fallen" but more just slipped out of that rocker and down onto the floor from the way things looked.... anyway, I FINALLY by getting her to sit up for awhile, and her medications, and then getting her feet under her and her walker "steady" I got her up and into the chair... the lady that is over the PT portion of the Home Health came over and of course I had to tell her about this.... and as I told her, Mom got up, walked with her walker after she was there, she was able to talk fine, she had no bruises, she did NOT hit her head, and I saw no difference from her the day before... she seems to be "fine" one moment, and the next she has no clue where she is or who I am... 
so none of that changed. 

So, after that woman left, I gave her the rest of her regular medications, some Ensure, something to drink and tried to get her to eat, and she of course did not want to eat again. And besides all that she stopped up the damned toliet (I have no clue what she is doing) but she did not tell me until yesterday and claimed it had been that way for a couple of days... well in among the woman being there, me trying to answer questions, trying to plunge the toliet, I finally went and got some MR. Plumber gel, poured it in, tried again, and I got it partially unstopped... but I left it and told Mom NOT to use it at all, to let it sit overnight and use the potty chair by the bed... and today, it may go ahead and unstop...

I have a "small snake" that can go down into the toliet and I know it is not very far, because the sinks work fine, I used the washer etc... and only the toliet seems to be the issue... I may have to call a plumber but I know how much they charge... last time mine was stopped up but down below my "clean out" in the yard, I poured bleach in it for days, and it was tree roots that slowly can "seep" into the pipes and fill them... so little did I know I almost had it when he got there, he basically ran a bit of the hand auger through there, and hell it took him 2 minutes and cost me over 100.00!!! So, that is why unless I just can't get it today, I do not want to call a plumber, especially on a weekend.... So, I was totally exhausted, hurting badly, my own lower spine is worse, and my neck, shoulders, arms and hands throb, burn and hurt so badly, I can barely stand to sit here and type... dammit the hell I am sick of this crap... but I get a call about the time I pulled up to my home from Mom's and it was the "lady" I 'thought" had been at the house earlier... and she was "concerned" that Mom falling out of the chair "worsened" her condition... and as I told her, in the first place both myself, my son feel and the woman that was there, that she really did not take a "hard fall" - it was more she just slipped out of that chair... that I have been TRYING TO GET RID of anyway... she cannot get in and out of it, it rocks and glides... and she needs to not sit it in anymore... 

plus I threw out an old magazine table, that is so wobbly and old, she tried to "push" herself up on it, and I know also is an issue... in fact I threw it outside yesterday and told her it was NOT coming back into the house... anyway, this woman almost acted as if I was "not doing the right thing" with Mom... well maybe I am wrong, but I have been doing everything, and 

if I remotely thought she was hurt, or in any way had hit her head, or was "worse" from this "fall" I would have called the ambulance and took her out to be checked out... but she was NOT injured, not even a bruise and in fact once she was up off the floor, got up and walked around, and so forth, she told the woman she felt "okay" and that was no "pain" at all other than her regular "back pain" that has been there for many months now.,. so I took "offense" to this woman, not knowing what took place, what I see every day of my life, what I know goes on etc... acting as if I am being "cruel" or something... honestly home health care is a "joke"... other than the "aid" helping Mom by showering, washing her hair, and changing her sheets a couple of times a week, the other 2 really do "nothing".... so I am not thrilled... I thought the entire purpose was for them to spend up to 35 hours a week with her, and be there to take some of this off my back, where I don't have to be over there 3 or 4 times every day... it is taking a toll on me badly, especially this past week... I am physically in horrible pain myself now, and when I am complaining, then it is really, really HORRIBLE pain! 

SO, I have a QUESTION? DOES ANYONE KNOW MORE ABOUT "NON TERMINAL HOSPICE" or more of A PERSON THAT COMES IN AND DOES MORE THINGS SUCH AS STAYING THERE A CERTAIN AMOUNT OF HOURS A DAY? I am "wading" through the insurance to see what is covered, and what she "qualifies" for... but I MYSELF NEED A CARETAKER, AND I NO LONGER HAVE ONE, and me trying to be almost a "FULL TIME CARETAKER FOR HER AND MYSELF, IS TAKING ITS TOLL ON ME"... so if anyone knows someone here in Ennis that does that type of thing whether just "personally" or through a company would you let me know?

Wednesday, March 23, 2016

Deciphering "Alzheimer's", all types of "Dementia", which includes even Parkinson's, and many more...

Deciphering "Alzheimer's", all types of "Dementia", which includes even Parkinson's, and many more... A cry out for answers, as I wade through this monumental amount of research and searching I am doing!!!



I also would like for anyone that has dealt with a loved one, or someone close to you who would know about a "fast type of dementia" or Alzheimer's and so forth. This situation has went from mild "memory" issues, and forgetfulness, to telling certain "stories" I felt may not be entirely true. That was about 2 to 3 years ago... as I watched I began to see worse issues, could not keep up paying bills, making doctors appts, and many other things that were "off"... Then about 6 months ago, it went nuts....
 We went to losing 2 different credit cards THREE TIMES within a WEEK, not "recalling" how to put a car in "drive" or reverse, not able to turn on and use an oven that has been there and fine now for 12 or more years, either taking TOO MUCH medication, or like last week DID NOT TAKE ANY MEDICATIONS, stays in the bed till noon now, has not watched a television in 6 months and used to watch daily. 
Not eating anything healthy, just junk basically, cannot even make out a check correctly, fill in paperwork of any kind at all by herself, losing things, cannot remember after being told 7 times within an hour what the "day" was, which was Tuesday, plus that information is ALWAYS ON A CLOCK, WITH THE TIME, DATE, DAY OF THE WEEK, MONTH and even temperature on it. Never realized it was "time to change the clocks", suddenly cannot "dial my or no one's phone number correctly, most of the time), now is complaining and has been lately, of not just having issues with going "Number 2" toilet wise" but is "obsessed" with "toilet habits, and I "think" I am came to understand now, sometimes just does not know they need to "go", so there are now "accidents"..not going to the restroom when they should, cannot recall "talking to me" later on the same day she called me, and not recalling what she even said. Has no clue most of the time about naming "objects" or rooms, etc... at least 85% of the time... not recalling even the month it is... these are but a "few" of the many, many things I've seen over the past about 4 to 5 months with my Mom. And it leaves me with "all kinds of issues" that I have to get her to talk about BEFORE things are too bad and her memory is so much worse...
 I almost think I can add "hallucinating" maybe at times...I know a doctor told me that sometimes when someone has one of these illnesses, and they "forget", they just kind of "make up
" and fill in the gaps with something that can remember... so it will make sense to them and everyone else or is supposed to.... 
PLUS from another post of mine today! :) 

                                HELP NEEDED ON THIS also!

I have several issues going on, a NEW ONE is the Honey Bee's in this old piece of bus in my back forty, behind my house! They had built there before then went away, and now they are back again making a "hive" and swarming a part of that old bus. 

I also WANT TO GIVE that bus to anyone who wants to take it, and sell what is there for scrap metal. Plus there are lots of downed trees, or some that would be easy to get down, and some of it is pecan wood, so it could be someone may want some of these dead trees and limbs... plus I Know I am going to probably have to PAY someone to bring a small tractor in and mow that back "forty"... with all of the rain, and such, I've tried to knock some of it down, but now with the bees on one side, and as tall as the weeds are getting, even me with the weed eater yesterday, 

and got some down, some I have already sprayed with weed killer, and still I feel the city will be by wanting me to get it mowed down... so there is a large enough gate on the back of that property where a flat bed trailer, or small tractor can get through with no problems... I have some trees in my back yard, one in particular that needs to be cut down, again, several are dead, and I have gotten a great deal of the things off of it I can but I cannot reach much of the tall stuff, 

plus I don't want to try and stand on a ladder to try and cut more off of them.. so I really want to get rid of the bees and the old bus, plus all of those old trees and limbs, and get that back lot mowed where I can keep it under control.... PLEASE anyone YOU MAY KNOW, OR WILL DO THIS FOR A REASONABLE PRICE I WOULD APPRECIATE IT... JUST Message me here and we can go over details thanks, Rhia

Thursday, February 25, 2016

Eldery parents,caretakers,your own illnesses,surgery,family matters, Humana and insurance,doctors offices and issues, and more...

 Life is not always  BED OF ROSES... but I would settle for a few soft petals for now...

I am so excited - My NEW CORDLESS Weed Eater Came in yesterday! No more trying to pull those heavy cords around the yard, and I can take this out into the "back forty" also. Plus it is really almost lighter in weight than the corded one, and certainly lighter than the "gas" one. I can't weed eat for any long length of time, but I did discover, as long as I take it slow, and take breaks fairly quickly in between, then I can do lots with it. I can't start my darned lawnmower, because I do not have enough strength in my arms anymore to pull it quickly enough for it to start. It sucks, because I just put almost everything new on it last summer. I put the new pull cord device on it, a new air filter, changed the oil, a new spark plug, and fixed the "baffle" on it that deflects the grass. So, I am hoping my neighbor who used to mow the lawn will still do so, and he can see if i did a good job in the "overhaul" I guess when it plays out on me, I may have to get one that is "push button" for starting or something. I no longer can pull the cord quickly enough to start those kind. Anyway, right now I hope "nothing else" breaks or needs replacing around here. 

I've got the surgery to pay for, a doctors visit tomorrow that will have to be paid in full right now by me... he is my PCP and the ONLY doctor NOT on my "preferred provider list"... Hopefully since Aetna bought Humana, (they are on Aetna's plan) finally it will come together and they also will be on Humana's also... it is so odd, Humana used to carry them as a preferred provider for years.... anyway, I am having HELL with the surgeon's assistant that is doing my neck surgery. I go through hell with them on insurance every time... I FOUND THEM AND CALLED NOW 3 TIMES to make sure his clinic is on the "preferred provider list"... and I have seen it and they told me AGAIN ON THE PHONE YESTERDAY, that they are on Humana's "preferred providers list".... BUT the doctors office said the insurance said that they are not... well the issue is they have it listed under their "clinic name" which Humana tells me that means "the doctor" is covered... and I even got a special number on the phone yesterday as a confirmation that he is a preferred provider that I faxed to the doctors office... anyway, I have a 750.00 deductible on any "non preferred" provider then the insurance will pay 60% of the bill anyway, and then I pay 40%... so if it comes down to it, once that 750 is met, I would owe 40% of whatever, office visits, etc... and sometimes that 40% is actually "cheaper" than the co-pay which now is 20.00 for a PCP and a specialist is 45.00 in co-pay.... anyway, between that, trying to get Mom all figured out as far as her medications, and so forth, making sure I have someone to get me back and forth to the surgery next week on my neck and I think my son will be able to, he has to check with his work, then I will be in a neck brace for about 4 to 6 weeks...

 I will be able to drive after a week or so, but being in that neck brace makes it a bit more difficult, plus my pain pump has to be refilled around the 18th or so.... gosh always something... I won't be able to bend over, so I will have to get "creative" in changing the dogs paper and feeding/watering them... the little one is so full of "pee and vinegar" as the old saying goes, LOL, I will have to be extra careful with him after surgery so he does not trip me, or make me do something to "injure" my neck for the first couple of weeks... anyway we have all of that going on, and some others things, with family going on... I think all of us are more stressed out than we can almost handle... keep your thoughts and prayers with all of us right now.... I know my family will appreciate it for sure... 

My daughter and her family are under a great amount of stress due to jobs issues... things are so up in the air with the oil and has industry, and her husband, my son-in-law has worked with that type of thing now for over 10 years... yet with the extreme drop in oil and gas prices, of course it is taking a toll on so many of the companies that have anything to do with oil and gas right now... It is wonderful for us when we go to the gas station, but a nightmare for so many who may lose their jobs, and so forth. Talk about a double edged sword... so I have her and her family in my heart and am concerned for them, as I know this is a difficult time for them also. He does not really know from one day to the next if he will have a job with the company or not, and after having that security, benefits, insurance and so forth for over 10 years, that is difficult to deal with.

Saturday, February 13, 2016

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..

Thursday, July 30, 2015

Trying to find "balance" between being a "Patient" and a "Caretaker"... a writer, a blogger, an Author, an activist, an Ambassador... and battling Lupus, RA, Sjogren's, Lumbar spine problems and chronic pain

I WILL BE SO GLAD WHEN THIS WEEK IS OVER!!!!!!!!!! I has been something everyday this week and today once again. AT noon Mom has an MRI on her lumbar spine. She HATES MRI's because of like many of us the noise and being so confined & be still... so I hope she makes it through okay. They did tell me that there is a doctor there at all times, & if a patient is extremely anxious, he can administer a really light sedative just to make them feel a bit more calm... where was that the last MRI I had??? I am not "fussing" about helping Mom out at all. That is not the meaning of this post. I know for her it is very difficult to go through all of this. In fact she missed PT yesterday.  Even though she has the schedule hanging right up on her calendar, she got confused I guess, so I went at 1:45 to pick her up, and she was not ready..... and when I said something about PT, she said today?? I said yes  - Mon. Wed and Fri.... all of this along with the medication I think the pain doctor gave her to take at bedtime so she can sleep, (she had not been sleeping due to the pain for weeks) it may have her a bit confused. She so rarely takes anything but basically blood pressure meds, potassium, Lasix, and Crestor... so having other meds in her system, I think has her kind of fuzzy.... hell I am FUZZY MINDED ALL THE TIME (LOL)!!!! Anyway she does know I am picking her up at noon today for the MRI... and then tomorrow she goes for the PT again. What I am seeing and thinking, if she goes a couple more times to PT, just about all they are doing for her, and some of it she is doing at home a couple of times a day anyway, she could probably go twice a week, and be fine. She can do the rest of it at home... and I do know she has been doing the exercises they showed her... I think that in itself, just not having to run out 3 times a week in this horrible heat, may help some. It is honestly so danged hot here, and we have a butt load of humidity to make things worse... I can't even stand in my kitchen giving the dogs their medications without sweating... insane. I have been turning the A/C off early when I first get up, then back on about 11 am or so, but I went and turned it on the "humidity" setting for now to dry out this "sticky, damp" feeling.... anyway, things here are nuts... I take my last round of antibiotics today for the cellulitis.... but the lump is not gone... so I am not sure if that is okay and the medications will continue on to work to get rid of it, or if it will just be a lump there for awhile, OR if I need more antibiotics.... I HOPE NOT the 3rd! They have really put me into one helluva tail spin with my stomach. Plus make me feel so tired and fatigued... on top of what my usual is, and I am just drained about all of it, but I don't want to wind up in the hospital either.. Mom will go in for the injections once the MRI is done and our pain doctor has the results. I figure sometimes next week, which will mean a VERY EARLY trip to Dallas, and way up Central Expressway to a surgery center on Greenville Avenue... so I don't look forward to that one either. I've just made this trip myself for my injections, and then the discogram a few weeks back... so once again, off to Dallas...

I am still quite puzzled as to why after all of the MRI's, CT's, X-rays, and tests on my lower back all these years, that not one test ever showed me missing the "lamina" that I was born without.... I've always said I don't think some of these scans and so forth are nearly as accurate at times... I can't think of one of them that was very accurate on me.... every time I've had a surgery, once the surgeon is actually looking inside, there has been a great deal more damage than what any "scan" ever would show.... even with my neck surgery, shoulder... knees... any of them... in fact I believe it was my cervical spine, the severe damage was in a "hidden" spot that the CT could not pick up from my understanding... so that makes me wonder how many of us suffer and doctors do these tests, and they don't look so bad, so they think we are just "making it up"... or it is not bad enough to warrant surgery and so forth. I have certainly fought with one doctor for 2 YEARS before they finally fixed my left elbow. I had about 19 steroid injections in it, before I found a doctor that did surgery right away, and sure enough the tests didn't show all of the damage....

I've also now am having issues with my right hand and fingers worse, but both hands and fingers. I've got swelling that is usually not where it is now, and I can barely stand to type for very long, and they hurt almost all the time. Always something... so to all have a good day.... I've got to do a few more things and then get ready to take Mom for the MRI.... more to come

"I feel as if I should have a full-time TV "Reality Show".... called "Chronic Illness/Pain patient - Caregiver This is MY LIFE! REALLY!

Sunday, September 28, 2014

Talk About News to Make You Shout! You must read this and be sure to go to all of the links!!!!

I was so blown over by this announcement from the Lupus Research Foundation I had to rub my eyes, blink and look again to make sure I saw what I saw Correctly!!! This is such phenomenal news I was just taken aback.

And further not only do we owe the NIH hats off to this incredible research opportunity, but everyone below along with all of the researchers individually, those folks that are on board for activism, Ambassadorship, Volunteers... everyone who tries their very best to stand up and say that what we have now as far as help for these illnesses are simply NOT acceptable, as the Arthritis Foundation puts it. Hats off to all that have been and will go back to the "Hill" in D.C. to open up and tell their stories, or the stories of those loved ones hit by the horrific illnesses. People like myself that try their best to live a "normal" life when there is never any sense of "normal" when you have a chronic illness/pain and especially when it comes to an autoimmune type of illness. I am so thrilled to put this on my blog and share it with my readers!!!! Be sure you go to ALL of the links and see what is being said about this incredible Undertaking... the FIRST EVER of ITS KIND to do something to stomp Lupus and RA, along with many other AI Illnesses into the ground.... Again I am just totally almost speechless.

AMP Rheumatoid Arthritis and Lupus:

The partners

  • NIH

  • AbbVie
  • Bristol-Myers Squibb
  • Merck
  • Pfizer
  • Sanofi
  • Takeda
Non-Profit Organizations

  • Arthritis Foundation
  • Foundation for the NIH
  • Lupus Foundation of America
  • Lupus Research Institute/Alliance for Lupus Research
  • Rheumatology Research Foundation



I will be posting more about this tomorrow and also more "Kudo's" to everyone participating om this historic event for RA and Lupus!!!

Two Days of Insanity....

As just about anyone knows who follows my Facebook and blog site, you know about the accident that happened on March 26th 2014, to my husband Jim. Most of you knew I was in Washington D.C. at the time with the Arthritic Foundation, for the Annual Summit on Capitol Hill. It was my very first time to be in DC, as well as my first time to get the opportunity to voice my own personal struggles, along with all of our struggles, involving autoimmune illness, medications, lack of doctors, especially Pediatric Rheumatologists, and so forth. There has not been nearly enough done about these illnesses, ranging from not enough doctors, not enough research, not enough knowledge to those who have the illnesses or know someone that does, whether family, caretaker, friend and so on.

I felt my voice there and since then has been integral in helping to move forward and fight against illnesses such as RA, Lupus, Sjogren's, MS, FM, CFS, and the gamut of Autoimmune illnesses that we do not even realize exist. A new factor for me this year had been that I have "pernicious anemia", which is an autoimmune illness. Rather than being "anemic" my body does not absorb enough out of my food, and keep it going in my body as it should, thus I take B-12 supplements, which by the way, it is the B-12 it effects as far as the autoimmune part of this. Of course I am on a HUGE daily dose of Folic Acid" which is B-6, due to one of the medications I take. It depletes the body's Folic Acid, so I must supplement it daily with about 400 Times the amount a normal person would need. I found out that much of my horrible sores, thrush, and mouth ulcers were caused from a lack of Folic Acid. Once I began using it daily, at a high dose (it is water soluble so you can't get "too much") my mouth is not nearly as bad about having all types of sores, ulcers, sore throats, thrush and so on as I had before.

I had not given much thought that due to the "nature" of what all has transpired that I would not be able to "voice" the everyday thoughts I feel surrounding what all happened, has happened, and what may or may not happen over the next year. In a way, that makes me very sad. The very one outlet I have to things in life, from illness, to children, to Mom, marriage, and my own frustrations with illness, I always knew I could come here and "talk" about what was happening and not at the time had to "censor" what I spoke about when it came to life. Yet, now I feel this heavy burden, although never was my fault, and I never gave any idea to it, I am may not speak about all of what is happening as the time over the next few months go by, So, if I avoid that subject it is certainly not because it is forgotten, or it is not still a huge everyday part of my life, but because life is as it is, I have to "alter" my own voice, as far as my posts, and not speak, unless it is in a very general sense of what happened. Most everyone that comes to my blog, for the most part are people that are close to me, enough that they already know the ongoing saga from March 26th, 2014. So, there is really not a "need" for me to tell others, but more of a need for me to be able to "release" my ongoing revelations about that being what it seems life as it is right now evolves around. You tend to get up when the "rooster" crows with the thoughts of it spewing out of your brain, and then all day long it seems every thing, every where, all that you do is a reminder of the nightmare of having something so horrible happen in your life. Each time I close my eyes, that is a last thought, and each morning I awake with it as a first thought, and all through the days you tend to live out in thought of it. Then while you sleep the PTSD hits, and it can also happen during waking hours. All of you who have Post Traumatic Stress Disorder know exactly what I mean... you spend your days trying to knock it off your shoulders and in the night, you try to take it out of your dreams, so you can at least have some peace during your sleep. Good Luck. Many people and I have even had the thoughts that "things" would be better as time goes by. Memories fade, time helps to heal the damage physically, mentally and emotionally. I can tell you that this... time has NOT erased, nor has it made it any better. If anything, each passing day the building up of being totally in damnation by all that is occurring around you, only grows larger, nothing fades. From the very 1st phone call, till the last piece of daily mail, to the questions, and I mean just daily questions, how are you, how are you getting by, how are things??? Questions, that sometimes I wished I could just say things SUCK! Things are worse, no better... life has lost its luster filled wonder, my dismay of voice, of writing, of being so caught up in something that I did NOT even have anything to do with, is running rampantly through my life and through my very veins, like the blood my heart pumps with every beat. You DON'T heal, not that quickly... you DON'T stop feeling guilty over something YOU DID NOT DO! You don't find a quick fix... there is none... so I plunge myself into trying to write, I plunge myself when I feel like it, trying to throw out all of the stuff in this house that are reminders of what life used to be like. I DON'T want to even remember a "good" or bad moment... I don't want to have to fear the past, present, or the future. I am sick and tired, of hearing, feeling, and being sick and tired. I am sick of bitching, griping, moaning, groaning and crying. I am sick of listening to others try to tell me it will work out, it will get better, because right now nothing seems better, everything seems out of sorts, out of whack, and I have lost all patience with those who think they can "fix" it for me. There is NO FIXING what is permanently broken.
My mouth and teeth for example. Let's get on that band wagon and have a talk about those. Of course not one dentist could fully assure me that my mouth would be better when all of my teeth that Sjögren's destroyed, when pulled out and dentures put in would be 100% better. I knew that. I am far from a moron, or from a dreamer. My "dreamer" stage left me a long time ago, after my job, and my life almost fell apart in Seattle. He threw enough sand in my eyes, and did enough damage to my heart, that I no longer am the "dreamer" I had been. I truly feel that is why the poetry I used to be able to write, sometimes 7 or 8 daily, don't come anymore. When Steve, did what he did, after bringing me over 3,000 miles away from my "home" and family, with promises that I would have a wonderful life in Seattle, to only shoot all of those good feelings down within a year or a little over after me getting settled in, with his cheating, lying deceitfulness... dreaming ... as far as being a dreamer, left. That is when a "new voice" emerged and my writing became totally different. It will never be as it was when I was that creature of wonderment, of discovery, of believing people truly cared.... he literally took his hand, reached in and pulled all of that from my heart, and threw it into the Sound at Seattle... for there is where all of those wonderment of feeling lie... in the Sound of Seattle... I can still at times feel the winds blowing across as I looked at the beautiful city, when I walked daily on Alki, loving each day there, and breathing new life, wanting and knowing a new glory would emerge.

I don't want to sound like I am that unhappy being here around my Mom, kids, and Grand Kids... and I am not putting down our lives, or feel "cheated" in some way as far as why we are here, and why we will probably continue to be right here, probably in the same house till Gabriel's horns blow. Yet, "cheated" from living life as I felt we would I can say is a terrible disappointment. Kind of like FINALLY after years and years... of not being able to say I was a "published author".... I got that opportunity... not only once but TWICE I can say I have two published books, and even have a "check" from the seller for two of them that actually sold! I am so tickled about it, I am not going to "cash" it, but frame it and put it on my wall by my computer and desk. Even though it is a mere little over 6.00, it still means that it is priceless to me. It gave me a tiny glimmer of "normal" and that a minute bit of my "hope" and Faith could actually coming back to me. Which is far from where I've been in the past 8 months or so. I had given up on normal forever, and as far as the glimmer of hope and faith; believe me it has been fading fast in the background of all that has taken place since 2005 and actually a bit before then.

As I had titled this post "Two Days of Insanity"... there were reasons for the title. I thought about "re-titling" the post, but whatever it is "called" will not change the meaning of the post in itself. I have been trying to squeeze in lots of my own personal advocacy and activist work, over the months, but between being gone to so many different appointments, taking care of all that needs to be done here at home daily. from taking out the trash to running to the market, it seems my time either is gone, or the energy that I did have in my "spoons" for the day are used up.

That should "stick" with me more than it does. When others ask me how I am doing, feeling, whether they mean illness wise, emotional wise, from autoimmune illnesses, to his issues with spinal cord injury, I really should say well I began this day with 8 spoons, getting showered and dressed took at least 2, maybe 3. By the time I had coupons ready, a list done, and ads matched up there flew out at least one at the very, very least. THEN I am looking at having at the most 5 spoons left. Well, by the time I run errands, get through the market, which here seems to be a nightmare any day of the week, or have to go and do something at Mom's,or it is laundry day, or I have to find and fix something for dinner, if I had already used up the left overs.... so I can contest, by then there are OVER 5 spoons used up, and my day is not over yet. 

I still have dishes to do, right now we are fighting "sugar ants", which I was raised here in TX, so here we called them "piss ants". Don't ask me why, but I always gathered it was because they were so extremely tiny... they will sniff out one crumb, and within an hour invade an entire bowl of dog food, if you are not watching. I decided to try something "harmless" to the dogs... so I read putting back soda around their bowls would stop the ants. They won't go into the baking soda. So, guess what? Both dog food bowls have baking soda surrounding them. Knowing my "Chi_Weenie".

Then I also read ants hate tea bags, like after you brew your tea, let the bag air dry and put it in the corner of a shelf where you have stuff it won't hurt and where you have seen ants. Hell I even bought the "good" any bait traps, and I am still finding ants in stupid places. I guess they are either hungry or thirsty. But, dammit I am sick of trying to keep from spraying Raid and getting the heck rid of them. Even though about a week ago, I bought "Raid" for ants mainly with a get this "Lemon scent". I hope the hell someone does not think it is furniture polish!!! And I sprayed it on a rag, and wiped down the splash boards window sills, everywhere and everything I could without getting it around food or anything else. And even after doing that, wiping, vacuuming, and spraying where I could. Plus I leave nothing "open". Anything from chips to bread, goes in the fridge. If it is something that possibly will attract an ant it goes in plastic or glass containers with lids on them. So, that the hellish little devils you would think would move on. I am NOT a fan of any kind of "bug".... from a spider, mosquito, I don't care what it is, if it is "creature" of any kind, it does NOT belong in my house. So, I am a real stickler for spraying the yard, all around the outside perimeter of the house, and then I keep the roach baits and ant baits out and update those about every 6 months. The ONE thing I cannot get rid of and that I despise so badly is those little freaky looking "newt" lizard looking things. They just make my skin crawl. Oddly enough all my life here in TX, before I went to Seattle in October of 2001, I had NEVER seen a "newt" or whatever at any of my homes... never... no kind of lizard thing. I had a mouse once, and actually had a possum climb up our pipe that came into the house to the water heater... and she actually took her scared butt down, got by the steps of our front porch and stayed there for weeks with babies clinging to her. It was weird. But no damned things like that. So, the first time I saw one in our home we live in now, I had no clue what the heck it was. Weird almost a pink iridecent looking thing that ran fast, looked like some kind of strange lizard, and I was hell bent to rid my house of those little bastards (excuse my French)... so here I go online to find out what to do to get rid of the damned things. We had gotten just about rid of the few mice in the attic, at the time they put that insulation down that is kind of like shredded looking newspaper. Other than that an occasional water bug, which won't last long here. or a spider that I also despise, thus I just knew I would find something to rid my house of those things. They certainly were not the cute little "GEIGO" Gecko... and even if they were I don't want them in my house....

Well, guess what ladies and gents! It is almost impossible to get rid of them. Undoubtably they are not effected by bug sprays, roach baits, spraying the outside all the way around the house, including the porches, and those damned things are just not subject to any of the poisons or baits. Well, I figured out they "hide" in the grooves of the siding and the frames of the windows and doors. They also hide behind out two front porch lights. Plus I would bet they are in the insulation of our walls. So, everything I read said leave them alone, they eat bugs and are harmless. They maybe harmless but they sure as hell don't look or move as if they harmless. They creep me out just about more than anything other than a snake.

Anyway, how I ever got off on that tangent I am not sure other than the one thing that came to mind, is one of our "storm windows" on the  kitchen window has just "popped loose" and was hanging there by a couple of screws. I almost fainted! If that sucker falls out and breaks we are in deep crap. They are not cheap, and we still need to buy all the ones that go over the windows in our music room. There are I believe there are 5 of those at about $80.00 plus a piece, because they are made to specifically fit the windows. We were going to get the man who put up all of the rest of them to get us those for a bit cheaper rate, and then he would put them up  ... of course something else always comes up thus we did not have the money or time now and again to finish them.. and they need to be done... those old windows back there do not even have any of the push pins and the stuff you put around the windows to seal the glass in.... the glaze is just about out of all of them, then we had hail knock a hole in one while Jim was in the hospital, so I have it all put together with cardboard and lots of duct tape... 9,999 uses for duct tape, a wire coat hanger, and WD-40!  

More later.... got to get dressed to take my Mom to shop...

Friday, August 29, 2014