NERVEmber and IPF! Have YOUR Voices Heard about Chronic Pain!

The NERVEmber 2016 committee has been created and the 2016 director is Rachel Smith. *\O/*

We are having our next committee meeting on Thursday, March 19, 2016 at 5pm EASTERN/2pm PACIFIC.

If you are interested in being on the NERVEmber committee please email Rachel at info@powerofpain.org

 






https://powerofpain.org/ipain-delegates/ 

 

National Pain Report and President Obama Speaking Up for Those in "Real Pain"

This is exactly the type of support we need! Great News and Thank you President Obama for addressing that our pain is "REAL"!

Please spread this link on to everyone you can. We NEED support like this to fight back against those who don't believe our pain is "real" and that we "need" our medications to be able to have some type of normal in our lives!




 Thank YOU President Obama for your words about this devastating illness often "invisible" yet very REAL!

The Latest Daily Addition of my newspaper "All Things Autoimmune".... For Friday morning February 26th....






The Newest Addition of my Daily Newspaper "All Things Autoimmune" from Chronic Pain and the possibility of Yoga and mindfulness & the Science it, to Green Tea helping Ra (a possibility) a great deal of new information for all of you! Interesting, I drink green tea usually iced especially in the Spring and Summer months, plus I have taken a green tea supplement for years, but more for helping "weight control" due to it's boosting of your digestive system, plus new information from the CDC about about effective the flu vaccine is....


I put my newspaper out daily, and usually I update it and put it out twice daily. The subjects that I usually put out there are things about Lupus, RA, and autoimmune illnesses, BUT, there are also many articles about chronic pain, our environment, about technology, the latest in medical science and its technology and more. So, there is something for everyone in most additions...please check it out and I will post a link daily here for everyone!



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.


A DATELINE EXCLUSIVE ABOUT SYNTHETIC DRUGS, AND HOW DEADLY THEY ARE.... I felt I needed to share this....

 A DATELINE Exclusive from Sunday Night - "Synthetic Drugs that are Deadly"

I am not sure how many of you watch Dateline in the evenings. I usually don't but I had seen an advertisement last night watching the news "just before the unexpected thunderstorm rolled in and caused all hell to break lose at my house" LOL.... then later I did watch it, and it was about some teenagers in a small town in Missouri, all honor roll students, all had never really partied, drank, or did drugs... and one of the girls decided for some "odd" reason she wanted to try "LSD". She had just "aced" her ACT scores for college, and got what she thought was two small "squares" of LSD from a friend, who knew a friend... all of which thought it was LSD, and nothing else. Although the "dealer" KNEW it was one of the new "designer drugs" that were coming out of China, not regulated, some of them even the DEA were really not aware of, and they found their way into this high school. Well, it was NOT LSD, but something so powerful, with a "synthetic chemical" in it, that you cannot even handle a tiny square of it without gloves on, because it can soak into your skin and be deadly... and you can't tell from one "square" to the other how much of this "drug" is in them... none of it is regulated, or made in a "lab" like anything we know of... well the 



Senior had a girl friend over, and (I thought it odd to think of them knowing much about LSD because you really don't hear of it much anymore) and her parents did not know that her and this other friend took each a square of this "drug".... one lived and the other DIED! It took awhile to track down through the pipeline of how she even got hold of this drug, but it was through some other kids at her school, none of which "sold drugs" or even did drugs, but did this as a favor for their friend... even though some of her best friends tried to talk her out of it... well, the parents and a younger girl left that morning, thinking the girls were sleeping in after being up late until they got a phone call from the other girls Mother. She had come over to pick up her daughter and here this other girl was not moving, no pulse, lips already blue.... and it is known that LSD in itself is usually NOT deadly... it may cause people to do stupid crap like jump off buildings etc... but not in itself kill people... anyway, it was some type of designer synthetic drug that NONE of the kids, parents or even the police dept or anyone who even heard of... and here it was in the kids high school.... it was a heartbreaking, but EYE opening story.... that can happen anywhere, in any town, large or small... I know the China has been stopped by the DEA of exporting MANY of these to the USA, and they have confiscated TONS of this cheaply MADE yet they make "millions" off of this stuff dealing it KNOWING IT CAN BE DEADLY!!!!! As I said, it truly was an eye opener... I've heard of a few "designer" drugs, but I had no clue either about how prevalent they are because they can be gotten to kids very easily, and are not costly like some of our other illegal drugs, even "pot" at times is known to be "laced" with this stuff... thus you think you are smoking it, and yet you are ingesting something deadly.....

Here is a link for more information.....


 http://www.nbcnews.com/dateline/video/how-to-protect-your-teen-from-synthetic-drugs-626272835722

Here is one photo of what some of these can look like, but some are in packages, and I guess even sold in some stores across the US

Here is another link for more information:

http://www.crimestoppersatlanta.org/blog/2014/06/synthetic-drugs-what-they-are-and-how-they-can-harm-you/


 And these can be sold a Gas Stations!

Arthritis Symposium in Dallas at Presbyterian Hospital Tomorrow Free Event!

I am thinking about going and for more information and/or to register, see this page!

The event is free, and a Campus Map is on the page also.




       https://www.texashealth.org/dallas/event/arthritis-symposium-thd-art

The Arthritis Foundation and Arthritis Introspective - Two Creations as One to Give Us Advocates a "Voice" in Our local communities

This is only a tip of the total iceberg from a teleconference I attended last night, but I am totally thrilled about the idea!

The AF has teamed up with Arthritis Introspective to finally create ways "we" as advocates, and Ambassadors and so forth can have our own local community Outreach and Groups available for our towns and counties. I am totally thrilled about this idea and have wanted to do this now for years. So, now seems like the time to get involved in this.


Here is the link to the URL of the non-profit:









They have a Facebook Page also:


I will be posting MUCH MUCH MORE ABOUT THIS OVER THE WEEKEND!

I'm Kind of Out OF it these past couple of days...



Sorry gals and guys. I have been in kind of a "funky" mood, state of mind, whatever you want to call it this past couple of days. It's not any "one" thing I can put my finger on, just a lot of little things here and there that I have kind of had to "mull over" and have reminders of awesome stuff, like my Tazzy, and then "not so great stuff" that I will not even mention... plus some of my family have been having "stuff" in life go on also, so I am concerned for them, and for Mom, and what the outcome will be on her visit Monday to the doctor. She has not felt "well" again now all week long... and I realize she is 80 years old, BUT, it is "not just age". Up until about 7 or 8 months ago, she had some issues, but nothing like I see now daily... she called me early this morning to ask me if I was "having surgery today"???? I told her Mom you know I just saw my Heart doctor yesterday and we have put off the "neck" surgery till the first part of March, and I do not even have a date yet.... and how she could "think" with no one "taking me", and me not saying a word, even yesterday when I went by... but those are just the things that tell me it is much more than just "age related".... anyway, I just have not even been able to post on my blog, which is unusual for me... I think I am just also worn out... I had been "running" since last week Before we went to the Casino last Thursday and then this week I have had stuff all week long I needed to do, catch up on etc... so I think I am just tired and probably need to take a break... and allow my mind to catch up with my body LOL! Have a good Friday everyone tomorrow... and hopefully by Saturday I will feel more like getting into posting etc... after over $130.00 YESTERDAY between MY CO-PAY AT THE DOCTOR, THEN THE CAR INSPECTION AND THEN I CAME HOME AND REGISTERED THE DAMNED THING ONLINE, AND ALL OF THAT WAS 135.00 JUST YESTERDAY!!!! INSANITY!!! Rhia

Thank You for the "Happy Birthday"!





Since some of you may not be on Facebook, I wanted to tell you "Thank You" for all of the Happy Birthdays!


It is so wonderful to have my "extended" online family here, on FB and so forth! You guys and gals really make me feel great when the days that I feel "not so great" come along!


So, I post a "Happy Birthday" and "Thank You" Graphic for ALL of you!

I hope from this day forward to give you many more very good posts, articles and information on all types of health issues, and especially those related to these autoimmune illnesses that plague so many of us.


Much Love and Thank you to ALL who read and follow!

Rhia





Happy Valentine's Day to All!

Wishing you and yours a Wonderful and Happy Valentine's Day! Enjoy the love that surrounds you, whether by family, friends, that special someone, or just loving yourself! Hugs to All, Rhia

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..

Happy Valentine's Day! to All! I wish everyone a Day of Reflection, of Love of Yourself, and of someone else, if there is another love in your life...

As the "day of Valentine's comes Around, no matter Well, Sick, or Somewhere in the Middle, we either have a Love of Our Life, Or Maybe wishing for that love or find ourselves in a place of not being sure. 

Whether anyone is "separate" from you and you find love there, "ALWAYS REMEMBER TO LOVE YOURSELF FIRST"!


We all too often especially those of us with Chronic Illnesses and Pain think we are "not lovable", but that is just not true. Love can come in so many, many different ways... yet to find you love yourself, shall bring love to your life, whether friends, family, or that special someone, you are truly Special.

I wish each of you a very special Valentine's Day! 

And thank each of you for coming to my blog and "supporting" me by reading my blog, and hopefully learning something at times also....

Rhia

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....







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.....