Showing posts with label feeling invisible. Show all posts
Showing posts with label feeling invisible. Show all posts

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.....

                           



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...

Friday, October 2, 2015

#invisibleillness Blog Post - and talking about the "fight" of our Life!

"Invisible Illness"? A term to some that would or may not make any sense. Usually for the most part, if you have an "ailment",  surgery, are ill with bronchitis, even things such as diabetes, people tend to "see" outwardly some signs of "illness"... a cold, the flu, even something such as hypertension, high blood pressure, will bring some outward visions maybe the person's face tends to be red, or they may show signs of edema, swelling.

Obesity, is a disease. Of course that, or anorexia, those ailments are also able to be seen.

Someone who has a loss of use of their limbs, such as legs, arms, or have an injury severe enough to require a cane, or a walker or wheelchair... all that can be seen....


Yet, when you "see" a person with Rheumatoid Arthritis, Osteoarthritis, Lupus, Chronic IBS, Pernicious Anemia, MS - at some levels, Mysethiana Gravis, Sjogren's, or chronic types of nerve pain, migraines, and the list goes on and on of true illnesses, that are often not "witnessed" by the outside world. Chronic Pain, which can result in so many, many 100's of different ways, may not absolutely "show" to the outside world.

So, when you see a person parking in a handicapped zone, and they have a placard, even though they may "appear" to be "fit as a fiddle" - never assume that is so. Some days, I may not use mine, or feel like I don't need to. Other days, it is almost imperative for me to try to park as closely as possible, especially is a large store, such as Wally World, Beall's, Penney's and you know the rest. I maybe in so much pain, or feel so weak, or so fatigued, it is all I can do to go in, get exactly what I need, and get out. But, outwardly someone passing by, may not see that in me.

I am a recent new member of a church. Some people there know me, or have made it a point to get to know me, thus they can "get" some reasons why I may appear to look one way yet feel totally another.


I've found that even with my own physicians... if I "remotely" go in for a follow up visit, especially with the Lupus, RA and so on, I had better NOT "appear" all that "better"... in other words, you walk in and even though that physician may have been seeing you for years, if you come in dressed in a nice dress, or nice jeans and shirt, have makeup on, and your hair in place... and jewelry on, some see that as meaning you are "okay"... which can be as far from WRONG as possible!!!!

99% of the time I go to my doctors, whether the Rheumatologist, my pain doctor, my PCP, my heart doctor or whomever, I make sure I DO NOT appear like "nothing" is wrong. Now, that does not mean go in appearing as if you are on "death's threshold"unless for real you DO feel that badly, and believe me there are times I do look it and feel it... but if I am having issues that I feel I want them to really HEAR and LISTEN to me, then I dress more casual, usually forgo most of the makeup, and not come in joking with the staff, and laughing it up.... because no matter what "medical records" show,  that "appearance" is what can make all the difference in whether your true concerns, pain, illness, problems are truly addressed or are more brushed off due to the fact you appear to be doing fine....


In fact, I know that most of us say, "Hey, how are you"???? or we are asked that in any setting and especially in the doctors office. I've come to the place that I say, well not really as well as I want to be, and that is one of my main reasons for being here, something is wrong, I am in too much pain or this and that are swollen, or whatever all of the symptoms that have been going on, I make sure I totally explain that, and I do NOT any longer, give that "oh, I am doing okay".....

Plus with "invisible illness(es), they are often just that "invisible"... and I always go with a very long list, of symptom, especially new things, of my mental, emotional and physical shape.... If I have heard about a new medication, or something that sounds as if it could be right for my situation, that I put notes down and I go through each and every one of them explaining, what it is or is not, how long, when it happens, what type of pain it is, and as you can tell, I try to MAKE any specialists, doctors, radiologists... whomever is doing something on me that moment... I get all of the information possible, and I ALWAYS ASK for a copy of the "test", lab, dr. findings, surgery notes, and so forth... I get it all, and I keep it all... that way I have PROOF that this, that or the other happened or did not happen so I can keep up with it, and also take it to other physicians that may need to see me in the future...


The EXTREMELY REMORSEFUL thing about having a/AN INVISIBLE ILLNESS(S)... is that YOU FEEL ABSOLUTELY INVISIBLE YOURSELF!!!!

There are so many times in my life, whether it be at a doctor, having surgery, going through one thing of the other... is that I feel as if I am just a "ghost", another "body" for them to work on... and that the "person" that is there, very real, with every breath you take it is like they could care less what you are feeling, thinking, going through... it is all MONEY, POWER AND GREED!!!! I CANNOT SAY how many times I've repeated those words as of lately.... MONEY, POWER AND GREED!! Where is ANY Sanctity for the HUMAN BEING AND HUMAN LIFE ANYMORE????

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