Showing posts with label Invisible illnesses. Show all posts
Showing posts with label Invisible illnesses. Show all posts

Tuesday, January 15, 2019

Markets' Responsbilities to their PAYING CUSTOMERS! They do NOT care anymore "what or how they sell products"

Asking for "Your Opinions".... If this had or "did happen" to you in your market, how would you feel about it?


I realize there are other subjects, like many of us that are "disabled" and although we go with a disability placard, we may not "look like" something is wrong, oh some days and others we may appear like we feel, and can barely walk. And people are peering at us, or if you have food stamps, and the checkers give us that "look like we are "trash"... or any number of things that as those with "invisible illnesses" may not "go out everyday" appearing as if we are on our "last legs".

As I had explained on a teleconference the other day, we still get those "looks".. like we are "faking" . Yet, below is just as bad, although it's not really about illness or disability, it does effect our "health" or could... if you buy a certain products that are "expired" or contain something "odd" that they should not... those very things can hospitalize or even cause someone to lose their life.


I talk often about the "stress" of life these days. NOTHING is "simple" anymore. Not one day for most people seems "easy" or "without some type of stress. I realize we are our own "worst enemy" when it comes to causing our lives to be entangled in a mess of bills, jobs, technology... so much that was made to make life and stress less, and jobs better, as we "work ourselves" right out of jobs, or the computer gives us "more trouble" than making something quicker.


We have taken away the "human contact" that used to be something we enjoyed. And the "automated" phone calls have just about gotten to where it's impossible to "talk to a "human" on the phone. After 45 minutes of the run a round, from one "voice", music", another voice, another hold, and then they either "hand up" or say "leave a message and they will return your call in 24 hours."


I had posted below on my Facebook page, but it reminded me of another conversation I just had over the weekend, and just how it effects those who are "chronically ill" and all of us.... so I wanted to add it in.



Well ALL of you are in agreement with my thoughts. IF I was a manager or owner of a market, and NO MATTER who the "vendor" was, if my employees saw a product "expired" on the shelves, they would be instructed to bring it to me, or the management, and let the manager handle it when the vendors came in and yes, I agree those vendors must have an "inventory" of stores, what products they leave, what dates those products expire, and it is of course their responsibility to pick those up and replace them. BUT, what irked me yesterday and my problem is this is AN ONGOING VERY FREQUENT ISSUE WITH THE STORE... it is NOT just "one product" it's their "vendors", it is "their own STORE BRAND" and she would not even "listen" to me.... when I was trying to explain, (I had bought two "Mrs. Baird's" pies one cherry and one peach on the 9th. The same day I bought some candles marked down that were marked to 3.88 and had been 7.99 "Frebreeze" brand... which I usually don't buy those, but they were a good price for that, so I bought two of them. I got home, and as soon as I took the little plastic top off of one, a piece of the glass was "chipped" and fell off into the candle. Well, some people may not use those glasses left, but I use the "candle containers" especially the large glass ones with lids for everything.


I have LOTS of them, and they are good for so many things that I put in them... so first of all that chip was where you could cut your finger, or it might "crack" when the candle was burning, plus although this one did not have a "lid" I knew I would find some use for it, so I took it back the very next day on the 10th... to exchange it, and I was going to buy a 3rd one because I did like the way the one I had burned smelled and it burns down "correctly" and it didn't burn up within a few hours... I took my receipt and the chipped one to customer service, and the one lady took it with the receipt and I went to get one to replace it and another one to buy. Well when I got back, another girl, who happened to be the girl that was sacking my stuff the day before with the candles because she even wrapped them in paper sacks so they would not get broken.... and the candle and my RECEIPT and the other woman had "disappeared".... well for the moment, the girl knew about the ordeal, since she was the one that sacked my stuff the day before, so she did an exchange (and by the way when I was back picking out those 2) I picked up about 7 or 8 OF THEM AND EVERY GLASS WAS CHIPPED OFF IN THE EXACT SAME PLACE!


And I even told her, that those were marked down BUT really with those chips in them they should mark them down more... anyway, I get home, and I had NOT opened those two Mrs. Baird's pies yet... so on the 10th in the evening, I did open the cherry one just to take a small bite... I was starving, I had not eaten since breakfast and just wanted a bite until dinner... well as soon as I pulled it out of the box, the "little bit of glazing" usually on them was "gone" as if it soaked into the pie and the crust was almost mushy... so I looked at the expiration date and it was dated JANUARY 7TH, 2019!!! I had bought it on JANUARY 9TH!!! So then I "look at the date on the peach one" and it was dated for a couple of weeks ahead BUT I open it up and took a small bite and it had 'NEON LIKE PINK STUFF" right inside the crust in places...!!!


I even looked to make sure I had not touched something and did it myself, but no I had just washed my hands and there was NOTHING like that to get on that pie! So, I boxed both of them up and took them back on the 11th!!!! Well the woman that waited on me has worked their since "grass" started to grow LOL... forever... and RATHER THAN LISTEN TO ME because I was going to mention the expired yogurt, the fruit with gnats all over it, fruit with mold on it, expired bread, and other things, cheese I had bought shredded that should have been good until Mid Feb. and got mold on it by the 3rd 2nd week in January, and just a number of things they either DO NOT STOCK ANYMORE, OR NEVER STOCK ENOUGH, or it's expired AND NOT JUST ONE BRAND, IT'S THE STORE BRANDS STUFF, ALONG WITH VENDORS STUFF ALSO... and she kept saying "do you want two pies" or what" I finally said NO, I WANT MY MONEY BACK! She did NOT want to even hear a word, blamed it ON STRICTLY THE VENDORS AND SAID IT WAS NOT THEIR JOB, and the people behind me I am sure heard it all, and she did not LIKE the fact, I was griping about their stuff. I took my 2.00 and left to pick up something I needed...


Well, I walk back to where there are some "Bimbo baked goods... and I picked up a couple of different ones because they had them marked 3 for 3.00 IF you BUY 3! Well, EVERY ONE WAS EITHER OUT OF DATE BY 2 OR 3 DAYS, OR WAS GOING OUT OF DATE THAT DAY OR THE NEXT!!!!! I sat right there and I am sure anyone close heard me say, YEAH AND I GUESS IT'S NOT THESE EMPLOYEES OR MANAGERS RESPONSIBILITY TO SELL OUT OF DATE MERCHANDISE THAT COULD MAKE SOMEONE SICK! I was so pissed... there fortunately was only 3 things I needed and it took me 15 minutes to FIND THE DAMNED DATES ON THEM! THAT IS ANOTHER GRIPE OF MINE... THE manufacturer's either put those expiration dates OVER THE OTHER WRITING, OR SO SMALL YOU CAN'T FIND IT, OR IN THE SAME COLOR OF A COLOR ON THE LABEL, anything to "HIDE the damned date stuff expires" because they do not WANT US TO FIND THOSE DATES!!!!

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.....

                           



Friday, January 29, 2016

Blog Post for Feb 2nd For Rheumatoid Arthritis Day!

The Rheumatoid Patient Foundation

has given us bloggers, or those who would like to post 7 topics to pick from to post about for National Rheumatoid Arthritis Day! I had picked the 7th one and am working on my blog post now. But I wanted share to these with you and the article in case you would like post post or blog about it!

 This began in 2013, and done so well, they decided to make it an annual event! I am proud and honored to put a blog post in. Of course for me many of these subjects ring like a bell in the night over things I, myself have been through and I am sure so they do for you. Be sure to include the hashtag ---


#TheRealRD in your posts!






Those are many great topics to blog about ad gives e an idea about where some of my blogging may go this year when it comes to RA!

 

To find out more details about how you can either submit a blog post or even send your thoughts in, see their website at---

http://rheum4us.org/rheumatoid-awareness-day-2016-the-real-rheumatoid-disease/

Sunday, January 3, 2016

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

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

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

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

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

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

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

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

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


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

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


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

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

Rhia

Thursday, October 22, 2015

Where do you turn when there is nowhere to turn you feel like???

I just cannot begin to even tell what all has went on with me over the past 10 days, but this has been one of the worst weeks in my life, and it is like I see no end in sight...


I had a "plumbing" issue and thought I had taken care of it... well then I go to check my "clean out" to make sure, and I still had some standing water, from my washer in it, and I knew the weather is going to get back, and with Winter coming on, I certainly did not need a plumbing problem... it sucks because I just had all new pipes put i=under the house, and then even replaced a large section of our outside sewer line a couple of years back. So, it is all almost new, and even the cleanout itself we added a new one in, in order to hopefully not run into bad issues again....

In fact one of the guys from out city water dept. told me tree roots are really bad about getting into the pipes as they age... they can somehow get into them, and he told me to get a cheap container of bleach, and pour down that clean out once every month or so, and that would stop the tree roots from getting so bad... and it has slipped my mind, but once I had poured some of that in, and also went and got some liquid cleaner and poured down it, I thought I had remedied it... so Monday, he comes out, runs the auger through it, said he cleaned it out over 90 feet, and the only thing he found was possibly some ball of cotton or something, and it was okay... well that took 5 minutes and 130.00 later out of my pocket to be fixed....

Okay, then my Mom and I have been for followups for our PCP..he keeps an eye on her, blood pressure, and she has had some issues with UTI's and he watches me every 3 months due to the Lupus.... of course I have just went through the abscess on my left thigh, and it is still not completely well, and I still have the hard lump on the other thigh, but it just has not gotten larger... but it is there and should not be, and if I can ever get the other leg well, I feel it needs to come out and be biopsied due to the Lupus, RA, Sjogren's and my history of autoimmune stuff, and the medications, it could be a "sarcoma" and/or maybe just a benign lipoma, but still I do need to have the surgeon remove it.... so my blood work comes back and again I am still anemic... which I have been now for a couple of years, enough that I take B-12 injections every month, and should be taking pills daily, but with all of my other meds, my stomach just had a difficult time with so much medication....

So, then I get a call, and my Mom's "kidney function" labs, came back very "low", which means her kidneys for some reason are not ridding the waste as they should... so she went back for more labs yesterday, but I had to find a Nephrologist, and she sees him in early November.


She is still too thin, lost way too much weight, she stays totally confused about her medications, appts, even going to the store, I almost feel she is just not able to go alone right now... whatever we both went through at first about 3 months ago with what seemed to be a "stomach bug".... has worked into neither of us eating very much, nothing tastes right, and there is not much I can even think of that I want to eat... and I have lost weight also, but I wanted to... so for me that was fine... I did not lose like she did...

She is getting very feeble, and if she does not take the Meclazine, like I do daily, even yesterday I could tell she was kind of "off balance" at Wally World... and then to top that off she is complaining about being short of breath, which last time we went through that we found out she has a "leaky valve" in her heart, that lets the blood with oxygen flow backwards, thus not getting enough of it through her body and lungs... but we had fate on our side, and for the time, her cardiologist was able to contain it without open heart surgery, by reducing her fluid intake, and her taking more Lasix, which keeps the flow a bit lower, and it does not flow backwards as much...

But, now once again, and it could be allergies, it could be a touch of COPD, her age, and even her just being so ill for so long... she went through a huge ordeal with her intestines and stomach... and come to find out she had not been taking her GERD medications in months and months I guess. She was on one prescription and somewhere down the line, I guess she lost track, or whatever and she was not taking GARD meds, which was a lot of the stomach issues, and then she tends to be "obsessed" in going to the "bathroom" - and when I began to read on this, the elderly people especially if they are having some dementia issues, or Alzheimer's, they become "obsessed" with their bathroom habits... how much, how many times a day, and on and on - and when we finally thought all of it had been resolved, then she takes a medication the doctor gave her "if" she is constipated.... but if not then she does not need to take it.... but again, she did not understand, so then she began having "accidents"... and I told her Mom, you do not need to take that medication, if you are not having a problem going... it will cause you to have "accidents" if it is not necessary.... anyway, I also have told her over and over, and over again, if she will USE THE FIBER DAILY, she will NOT have issues with being constipated.... and then she will not need that medication..... Once I found out about the "fiber" that is now "clear" and is does not "thicken" up like the first ones that came out, or even the Gummies... I hate Gummires but if I take two of those in the morning and two at night... then I have no problems as far as my stomach, intestinal tract and so forth..,

So, then I wanted to get a new puppy. I've decided that even though it has not been that long since Tazzy passed away, I felt that both Bub's and I both would "feel better" and have something "positive" to look forward to and I just feel that it is a good thing for him and myself.. but I've been through the mill trying to "adopt"... I never had to give out so much information, and have all of these references, and on and on.... I've adopted several pups in my years, and even a few cats.. and of course they wanted to "know" some about me, but not like it is now.... and I "get" they must watch whom they have that adopts these animals, but I've had dogs now most all of my grown life, and cats... and I got Tazzy in Seattle for a Christmas present, and we purchased her, and I also purchased Bub"s as a puppy, so I've never had any issues when it came to adopting or buying a new pup....

So, in beetween trying to find time to go look at a puppy over in Waxahachie, and trying to take Bub's in for his shots, and nails clipped, and then I have about 50 houseplants I needed to "de-critter and bring in before the weather gets bad, and then having to take Mom for all of her stuff, and run errands... and you name it, put my own lawn mower back together, and went and bought a new gas can, since my neighbor never returned mine, and I guess I am too stupid to use the "new ordeal" types of gas holders, because I poured gas on my hands and so forth yesterday evening, just rying to put some in the mower to see if it will crank... I replaced the entire pulley mechanism, the air filter, the oil, and the spark plug, but I have heck trying to start it, because I no longer have enough strength in my arms to pull on it....

Well, I had also spent two weeks cleaning out my storage building and throwing stuff away that had been under the carport... and guess what? Do you think one neighbor would ask me if I needed help???? They even saw me this morning, regrettingly having to toss away some of my beautiful house plants, but ants have taken up around the roots, and the only thing to do is throw them away,,, and one of them was my very first "airplane" plant, the "Momma" plant, and out of it, I had between 50 to 70 plants, along with a couple of others.... so I bring my Palm in that doubled in size over the summer, and some of my other larger plants, I get them in, and then find ants in the bottoms of two of them outside.... so then I got paranoid, that these in here maybe have ants, and even after spraying them, and letting them stay out until they dry, I now am making to watch for signs of ants, because I certainly do not want those in my house....

My Chi-Weenie Bub's already has a very huge issue, with allergies, and sneezing, plus he stays "itchy" all the time... and sometimes snores... so I something he is allergic to and I surely don't want to make it worse by finding I have brought ants in the house...


I've had to miss twice being able to go see a new puppy due to running everywhere else, and now the weather was suppsed to get very bad, so I postponed Bub's Vet visit for today, and now dammit the weather seems fine and I could have taken him anyway... s that upsets me.... his nails are so long, and he will not allow anyone to touch his feet, last time I had to muzzle him, because he nipped at my Vet's assistant and I just hate having to put that thing on him,,,,,

Now my own Rheumatologist appt did not really turn out well... of all days, and I had been ill for weeks with a Flare before i went, and then finally the day arrives so I can go see him, and that is the one day, I am "feeling better" and my knuckes were not swollen as they have been, then he gives me a flu shot, and I will be damned if for the first time, the shot made me sick!!! I know they should not, but I came down running a fever, chills, feeling totally exhausted and weak for like 5 days after the shot.... I even asked my PCP and my Pharmacist if they have had others complain about it, and I know my Pharmacist said Yes, so I figure due to my autoimmune issues and all of the added stress, I may have had a "case" of the flu, and but I had a Lupus Flare, but until I had the vaccine for two weeks, they could not give me one at that moment, because it had only been a week, and it takes two for the vaccine to have its full effect... and if they had given me an injection and dosage pack then it may have made the flu vaccine less effective... so now it has been two weeks, and I still have the flare, but I feel like hell now and my fatigue is so bad, I don't even have enough strength to take myself to see my PCP...

Then there is the ordeal of finding a New "Medicare Advantage PLan"  especially for me... even though the "Obama" ordeal should have stopped the "Medi-gap" policies for "discriminating" against me because I am not 65 yet, they still do... and the one I found would cost me 700.00 A MONTH just to have a Medi-Gap" policy.

But, Untied Healthcare, Secure Horizons SUCK, SUCK, SUCK, AND MORE SUCK!!!! That was the worst mistake I made changing from Humana over to them last year.., they are liars, they are scammers, they drive myself and my Mom nuts with constant phone calls, mail and you name it.... wanting to have a "home visit" or "check my medications" and as I have told them, I DO NOT NEED a home visit, and my medications are fully understood, and I have no need for them to disrupt my life, and furthermore I AM TOTALLY PEEVED AT AARP!!!!! They should be ashamed of themselves for "sponoring" such a lousy, no  or even our Urgent Care.... it is insane.. so now I have to make that decision for both Mom and myself as to whom to go to and what type of a plan etc....

Then there is this entire ORDEAL about this "accident" that happened in March 26th 2014.. when my soon to be ex-husband as I had been told at first was accidentally "tapped" going into the Dallas area on I-45, and they spun the car out of control, Jim claims he remembers nothing, and now they are saying that "HE" initially hit the edge of the Tahoe on the back, and it went off the highway, but an 18 wheel tractor trailer who was behind Jim, was on his cell phone, and if he had not been, he would not have RAN OVER the car!!!! This had not been like 18 MONTHS ago and is still ongoing!!! Rather than "mediate" which is what we felt the whole time they would do, it appears they will go to trial, which means once again, my life turned upside down and right side out, and in all honesty, I do not even know WHY I am a part of this????? Jim left 4 months ago, and I found out, that he stands to get "double" the suit, if I AM NOT with him!!! Good reason to suddenly move back to Seattle, and me not know why.... after 13 years together, and 10 married, even with all of his issues now not able to walk, drive, and the list goes on and on, he all of a sudden gets a ticket, and flies back to Seattle.... So, later I learn that he gets "double" the money if I am not "his caretaker" anymore... and what about my CARETAKER????? I can't even get a neighbor to help me move something heavy, and now they act like I "ran him off" the ones next door will not speak, and he used to mow the lawn and help us out, the whole time Jim was here, the day Jim left, it is like I DO NOT EXIST!!!!!

Now, it appears this "could go to trial" which means a week or more going to Dallas everyday to a court, and honestly, I feel this has all been a "shaft" on my acct... he is getting the money, unlike what I was told in the beginning, even though it has caused me to LOSE all of my Teeth, have major complications with my Lupus and RA, the stress I am already under is bad enough, and my doctors continue to tell me if I don't get some "peace of mind" I may not survive a 3RD ONE!!!!!!

So, I am SICK AND TIRED OF ALL MY LIFE, TURNED UPSIDE DOWN... and I feel as if I am just a DOORMAT.... when I can "help" then everyone is after me... yet, when it comes to me needing help, everyone seems to "disappear".....

I feel like my time is so totally wrapped up in something else, or someone else, that I can't sit down to work on my blog, write my book and finish it, I feel like I've had to let myself get behind on my advocacy work - everything my life that "matters" to me, not just health wise, but my pup, and now after Tazzy passing away, Bub's and I feel all alone, and I can tell he is continuing to miss her terribly... but because of other "stuff", I could not even shake loose long enough to go look at a pup for adoption, and had the chance today, yet the weather says we are supposed to have 100% thunderstorms, lightening, flash floods, and is could even hail... well, I can't run over to Waxahachie, not knowing whether the weather might turn horrible within moments... it just now began to sprinkle here, and I could have went and took Bub's for his shots and his nails cut, but it appeared as if that weather would be here about the time I needed to go to the Vet... and alas I could have gone, never fails... so now that is postponed, and I had to postpone going to Waxahachie, as I said I certainly can't take a chance into getting into a flash flood, or powerful thunderstorm, or some idiot running over me.. which happens quite frequently on 287 when the roads are DRY, much less any rain on them....

Then it is my own health issues, lots I have "left undone" simply because I have to get my Mom feeling better, and make sure she is not having some really terrible kidney issues, or something going on now with that valve in her heart.... those things are terribly important.... yet, my life, my home, my car, my Bub's, me.... all of that is also crucial, if I a not WELL, whether emotionally, physically, or mentally, then I am certainly no good to anyone else...

It always takes me back to the "spoon theory"..... I ONLY HAVE so many "spoons" a day and it gets to the place, that I feel as if I have "less" each day.

So, when I have, let's say 10 spoons - and to do my laundry, take out the trash, put a chicken on to cook in my Crockpot, bake a cake, and try to deal with just getting a "few" of my houseplants in before the cold hits.... that is already over 5 spoons, and if I take a shower, than that uses at least 2 to 3 spoons, depending on it I have to dress to go out to town, run errands, and so on.... by the time I "fix" Bub's and I dinner, make sure all is well, locked up, and even try to get online enough to write either here, on FB, my blog then I have already "borrowed" spoons from the next day....

And if I am already not well, especially dealing with a Lupus Migraine and a flare, then that strips me of 4 spoons or more before anything else begins in a day.... then errands, medications, taking Mom to the store, or to do labs, or to shop, or having to go and pick up 5 or 6 gallons of drinking water... we refuse now to drink our tap water, or if there are bills to pay, or I have medications to pick up, and I've used DOZENS of SPOONS way too far in advance, trying to upstop my sewer line, completely redo the wiring in a big lamp... I have a ceiling fan, and I need to get it up in my living room, then I find that I don't have just ONE broken window that has been "broken" and held together with duct tape and cardboard now for months, due to it hailing, I also found another broken one yesterday in my bedroom and I have no clue to even why it is cracked all the way across it side to side.... plus in that spare bedroom where the other one is, I have another one that someone tried to "repair" by caulking up the hole in it, but all of those 4 or 5 windows back there are so brittle, and they are so loose, because all of the sealant has fallen away or had gotten so brittle, that they ALL need to be replaced or at least replace the two that are broken and then pin and glaze the others... and I have the push pins and glaze, but guess what??? I know how, but cannot find the time to do it, nor can I find the time to pain my house.... which I wanted to do before the colder winter came in, I have two gallons of brand new outside white paint, and I have already had them back once to be shaken so I could begin painting, but of course there is always something that takes me away from what I feel I need to be doing... all are important and yes, I could "hire" someone to put in the ceiling fan, and replace the windows, but on the monthly check I receive from my Social Security, there is no way, I can afford to have people hired to come to do it.... and as I said, above, as many times as I have done things for others, out of the kindness of my heart, you think anyone standing in these yards around me, will offer to help??? NOT ONE!!!!

I have to wonder where I went so wrong, that I feel I am totally being punished, and I have no clue as to why.....

As someone told me not long ago, "You are TOO nice"! Start saying NO to some of this stuff... if it is going to cause me to lose out on time I need to spend doing things that are important for myself, Bub's and my home, then there needs to be a moment to stop and say, hey, I would love to, but I am just too far behind, and I am too overwhelmed as it is, so I have to decline.... but I find it difficult to do that....

Dowes this have anything to do with autoimmune illnesses, Lupus, RA, Sjogren's, Invisible Illnesses, Chronic Pain, Chronic Fatigue, medications and so forth YES!!!!! Yes it has all to do with them... I am no longer able to DO it ALL! BUT WHERE DO YOU FIND A PLACE TO FINALLY SAY NO!.... THERE IS WHERE I AM AT A LOSS...

Sunday, October 4, 2015

Chronically Ill, Feeling Chronically Hopeless and Helpless - Trying to sort out Autoimmune illnesses, from the entangled life many of us have....

I am having an extremely difficult time (with everything) I guess I might as well say... but several are just really getting to me.... first of all, as many of you who knew about the "accident" in March 2014, which totally tore our lives to shreds (if things had not already been lousy as far as health issues)... and then that happened... most close friends know about the "ensuing" "law suit" that has been ongoing now for almost 20 months or so... anyway, many know that my own health just went all terribly down hill due to the untold amount of emotional, mental and physical stress I endured. I am NOT saying at all that my "partner" who had been married to me for 10 years and we had been together for 13 years, has gone through as much and in many ways MORE emotional, mental, physical and psychological stress... the turmoil for few seconds were on I-45 headed into Dallas, took what was somewhat of a normal daily life, although I had endured several chronic health problems, and turned lives, mine, his, my Mom, my two kids... and many others have been effected by this... He decided to move on, and why honestly until this moment, I am not sure why.... but nevertheless, he had his reasons, some I may 'get" others I don't get at all, but again I went through and am still going through a "mourning"... a "grieving" process even though there was not a 'death" in this instance, thank goodness, it still is a LOSS... a loss of a relationship, a friendship, we did everything together... and now I am here and he is in WA state.... so with that said, after losing all of my teeth due to Sjogren's and the stress.... the RA, Lupus and so forth growing worse, then 2 bouts of double pneumonia for me, and now a break out of cellulitis first, along with the abscess that was after the cellulitis... all related to one another, and another "lump" that has not been cut open and checked yet. It probably needs to be biopsied also, although NOT growing larger as this 1st one did, it is also NOT going away either... now add on that I have some issues on my very lower lumbar/sacral spine, that probably really need to be repaired with surgery, then my Mom, who began like I did, with severe "hip" pain, come to find out hers is also related to her lumbar spine. In between all of that, I became terribly sick to my stomach for days, and days and then Mom also had an entire intestinal tract "thing" going on for weeks and weeks. WE HOPE her problems have now been addressed and that part is over with... but i know she is frightened about having stomach, intestinal issues, especially since her last living sibling, my Aunt Geraldine passed away about 2 months ago after fighting a rare form of digestive tract cancer.... so Mom I know is concerned knowing all of went on like that....

Then last week after trying to get a chest Xray performed about 7 weeks or more, I FINALLY did get it, and the information is at my Rheumatologists office (the Xray was done due to a TB blood test not being "correct" thus they did the chest X ray as a followup) but I have not had ANY of my "biologic" meds for the RA since I found the lump in my leg... so for about 3 months I've been terrified to take it knowing it can cause an infection to get worse... but I do see my Rheumatologist, next week thank goodness, if it does NOT get cancelled again because someone did not do the schedule correctly....

And he sent me an email saying we would discuss options at my appt... which is fine with me.....

NOW, onto the part.... many of you also know I lost my best "fur baby" my Tazzy week before last... well on the 22nd of September, I think... her poor heart I guess was just worn out, and after spending an incredible last night with her, singing to her, rocking her, telling her all about our good times together, that early morning she passed away in my arms... I still cannot believe at times she is gone... I come in from errands and think she will be there with her "bubba" just wagging tails and so happy to see me... whether I am gone 10 minutes or 10 hours.... when I walk it I always get a very "welcome home"..... and Bub's my "chi-weenie" he i about 5 I think... 5 years old or so... time gets away from us... but bless his heart... he is missing her, and I hear it when it cries at times, and see it in his eyes... I think he thinks I will bring her home one day... like he is looking for her to be in my arms.... and I had her cremated, so she sits here on my desk right beside me... and I will take her little cedar box down and let Bub's see it.... this morning when I opened it for a moment... he sniffed of it, and kind of looked odd... and then it was almost as if he was telling me "no" that is not my sister.... And he just acted differently than he used to.... so I am trying my best to give him as much love and extra attention as I can... I brought him a new toy home yesterday, and he has been doing really good... I thought he may begin having "accidents" in the floor but so far he has not done that but maybe once.....
OKAY NOW TO THE THINGS I AM CONFUSED ABOUT....

A "part" of me wonders if getting a new puppy in the next few months when I find one that is what my ideas are... if that is an "okay" thing to do, and how Bub's will deal with it... I do know he misses Tazz, and he always wanted her to play, tug of war, with the toys... or Bub's likes to sling it from side to side, and he likes me to call his name and tell him "Bub's sling the heck out of it".... so a piece of me, wonders if this is way too early to think about another one, both for myself and for Bub's.... I NEVER want to feel as if I tried to "forget her" in getting a new pup.... and she will always be the light of my life... and nothing will ever change that... the love we shared is not measurable... but also about Bub's... would he feel "less lonely" and want to play with a new pup, or would he get jealous, and feel as if he takes "2nd base" because that is sure not true... him and Tazz were and would have always been treated equal in love... my heart is large enough to love them both... and I try to never show I favored one of them over the other.... plus I am fed up with the world, this nation, the greed, the lying, cheating, self righteous indignation I witness each and every day... whether online, the news, from the papers, wherever I look all I see is total "take care of yourself" and to heck with the needs of others... I was NOT raised that way, and never will I try and do something intentionally to do any and all of the horrible things seen in this nation, the state, this town and this world....

Getting back to my own "personal issues" I used to be able to do just about anything when it came to home repair, car things, and anything DIY - I love it, loved it, and could install a water heater myself, put up ceiling fans myself, paint, you name it, I could do it... and it is NOT that I do not have the know how anymore... I Don't have the STRENGTH especially upper body... my ceiling fan went out in my living room of all places.... and I have it own night and day usually almost 365 days a year, either to cool things down, or pull the warm air down in the winter... so I knew the motor was beginning to get slower, but I got another over a year out of it, but I have to replace it!!! And even with my ladder for inside that I have, I can do it myself, but my arms after the shoulder and neck surgeries, tend to be not enough to hold much of anything over my head for any length of time.... believe me I almost bought one yesterday, to bring home and try... and YES I know to make sure the power is all off to that room etc.... and could but if I get in the middle of it, and have no back up plan, then what the heck? I would have to leave it down, tape the wires up and find someone to put it in anyway.... I am at a crossroads in so many ways in my life... this stupid "hearing" for the lawsuit is supposed to be November 4th, but we do not know for sure, and probably won't until the week before... AND I NEED TO HAVE THAT LOWER LUMBAR/SACRAL surgery before year end due to insurance... and that is another thing , I am going to also have to do research on these stupid Medicare advantage plans... the one Mom and I have now is useless... it does not even cover a HOSPITAL in this county!!!! It has just been a nightmare with them, and as far as I am concerned AARP Secure Horizons - /United Healthcare/ I WOULD NEVER EVER RECOMMENDED THEM AGAIN!!! They flat lied when I looked at their website, and called a number of times to make sure ALL of our doctors, meds and so forth were covered... well once they have their claws into many people AFTER you could NOT change until the next open enrollment, and they did things like "drop doctors" even those they said they would cover, sent some "new cards" that was NOT the policy that person wanted and so forth BUT for Mom she could take her Medicare back, and pay for a "Medigap" Supplemental policy... but for ME since I am under 65 - I have found only ONE "supplemental" policy and it was 700.00 a MONTH!!!!! No one can pay out like that especially if you are disabled anyway So, as you can tell, I've got lots of research, decisions, and so on to make... and I so wished now I would have never been "named" in the suit.... my life would not have nearly as much stress on it..... but hindsight is 20/20

Sunday, September 27, 2015

Invisible Illnesses Week IS Here! Join Me!!! I havve posted this blog, put it up on Twitter, FB, and I also have a link to the #invisibleillnesses












http://invisibleillnessweek.com/




 You may also participate in several activities during that week! I know this is a very tough subject for so many of us.



I realize for myself, I find that I am always trying to "explain" why I do something a certain way, or why I can't do certain things. And I also realize unless someone is close to you, they just do not "get" what an Invisible Illness is, nor do they get hwy you have a "handicapped" parking sign" - or you do not go out as much, or many things in your home you must either live with, or try to find someone to help you with.... This is just a tiny small amount of what I've blogged and written about in my years and blogging and many more writing.... 

I shall much more to say on the subject over the next weeks coming up!


This kind of slipped up on me, and I was not aware it began so quickly - I have LOTS to say about "invisible Illnesses, and just how much they effect SO MANY lives in so MANY ways!!!! I will try to put some thoughts together by tomorrow and post more......


When you have a person look "down" at you for parking with a "handicapped sign" or they are staring for any other reasons, usually several that is just ONE aspect of how chronic and invisible illnesses can "haunt" your daily life,


I have people in disbelief that I have had so many surgeries, or that I have Lupus, Sjogren's, and RA.... well NO I do not look SICK all the time, but they also do not see those days and times I am unable to get out of my home, or even do much of anything i my home, but sit on the sofa and watch movies with my pup.

I, in fact lost my Pug, this past week Tazz. It was extremely sudden an unexpected, and she did not even appear to be sick, until it was too late to truly even find out what caused her to be ill. We assume, it was her heart, and it gave out on her, after 13 years of being my precious "baby girl", my friend, my companion, my all, my everything, and giving me an unconditional love that no one else can really give. Thank goodness I have her "brother" who is about 7 years old, Bubba, I call him Bub's, who also misses her and I know he is confused as to why "sissy" is not here. But, we have one another to lean on and that right now is my saving grace. As I hope tomorrow will END a very long drawn out situation that has created chaos and havoc in my life since March 2014, then I pray that something that appears to be half way "normal" shall come to light.

I hope to be able to get back to blogging more, my advocacy and activism, & helping others fnd their way through the often rocky climb and confusion of "invisible illnesses" .... They cloud our minds, our hearts, our souls and our lives... and I hope I can help others to find their way out of that cloudy, insanity of being chronically ill, and often many not understanding it all....

Monday, August 31, 2015

September National Pain Awareness 2015 starts tomorrow! "Beautify in Blue" campaign by the US Pain Foundation.

 Also see this link: http://www.uspainfoundation.org/ and sign up for the 30 day Challenge!!! There is a .pdf that you can find there and I have posted the information in a post below... come in and join!!!


Monday, April 13, 2015

Perfect comeback #HAWMC Wego Health Writers Challenge April 13th 2016

I have to say for the most part, I don't have many people that are "on my back" about what I do, don't do, should or should not do, when it comes to my chronic health conditions, RA, Lupus, Sjogren's, Raynauds, heart problems and the list continues.

There is one exception to that although. Mothers have a tendency to be "overprotective. It matter not if the kids are 2 years old or 52 years old. For them, a Mother is always the protector. So, my Mom I must say would be the person that I am constantly having to give a "perfect comeback" to when I want or do something, and she feels it is harmful to me, or could make my conditions worsen.

So, when the subject comes up about I should not do something such as do light yard work, or gardening. Or a good one is always how upset she gets when I must drive to Dallas to see some of the physicians there. She feels I should not "drive" that far (35 miles one way), and of course he concern is more about the high amount of traffic in the larger city, than the mileage.

My "perfect comeback" for many of her needless worries is that "if I don't drive there, or I don't do the light law work, or go wherever she feels I should not especially "alone" I ask her who will? She is 80 or going to be in August, and in all honesty, she can't even put gas in her own car. My husband is parpalegic and he is not allowed to drive at all, and would not be able to if he even thought he could. Both of my grown kids are a very long distance away. Especially my daughter. She is about 8 hours away. My son, although closer is still far enough away, that he can't simply drive down here anytime I need something, or need to go somewhere, he has his own life to deal with. We have no "friends" that can do any of these things. So, if I don't clean, cook, take us to doctor's appointments, pick up medications, make sure clothes are clean, the trash is out, and the list of course is endless, then it would not get done at all. Do I like it that way? Of course not. Before my husbands accident a year ago, he was "my caretaker". He did some of the dinner cooking, could run to the market if I was not feeling well, and even though I still did many things, when it came down to it, errands, groceries, some of the cooking, etc. he could do. Which took a huge load off of my own shoulders. Now, it is no longer that way. He can walk, but not far, and not without a cane. He is not able to drive, he can't bend over, his balance is very impaired, and so forth, so "me" is the only "person" I have to depend upon.

So, usually whenever my Mom, or anyone that knows me well enough to ask me "how I manage it", or "should I not be doing a certain thing"; my answer is usually just as I've said. "If I don't take care of all of these things, then how do they get done, and who shall be able to do them?"

For others in general, I let them know, yes, I have several very "silent" but serious illnesses. But, I do listen to my physicians who all know the massive amount of "stress" related things I have to take care of. If it comes to a place that I get too ill, then I am just on the sofa, for however long that is (last time while my husband was still in the hospital I had double pneumonia) and was down for about 8 to 10 days. I've had pneumonia again since that one, and still I was down for about 5 days. Those are the times, that some things just don't get done. So, I let people know that I am fully capable of taking care of things for the most part, and those that either feel I should "not" do what I do, or those that feel since I am doing everything, that maybe "I am not all that ill"... I give them a quick reminder about the "spoon theory" also. That is one of the best ways to also explain to people about how much you do, why you do things in the manner you do, and when that days "spoons" or whatever you may want to use as an example run over, then I may have to "borrow" from the next days. Then I "catch up" when things are smoother.

It is never easy to explain your "invisible illnesses". But, for those that truly know just how ill you are, it is never easy to explain to them, you also can't just sit down on the sofa, and allow yourself to "wallow" in pity and despair. Life moves forward, and that means I must do so also, even on those days that I may feel I just can't take another step.