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Showing posts with label Lupus. Show all posts
Showing posts with label Lupus. Show all posts
Thursday, June 9, 2016
Tuesday, June 7, 2016
Mom and Sharing a bit more.....
I was not sure about posting this here but it seems like the very best spot to let those who want to know about my Mom, Henrietta Steele. Of course this is Pam Steele, from the Class of 78, gosh a long time ago, LOL.... and many knew my Dad Minnis, that worked for Ennis Business Forms for 45 years, started at 16, and walked from Byrd/Rankin back and forth until he finally got his Dad's car (Model A) I think... anyway, back then it was still Ennis Tag. My Mom was having signs of "dementia" for a bit, but she is to be 81 in August, so "memory issues" are a part of that anyway. Yet, just this past January, she was still able to do much of her "daily stuff", cooking, cleaning, still in that little tiny house on Anthony Dr. - where I was raised, etc.
But, within weeks, things went from "okay" to wait a minute something is very wrong. She was not able to "recall" how to put her car in drive, not able to turn on her oven, could not recall how to use the Microwave, and from there she quickly was stricken with what I feel is "Lewey Bodies" Dementia, it moves extremely fast, and her symptoms to be are definitely what I would say "fits".... both my Grandparents Rosie and Joe Svehlak, her parents, had Alzhemeir's/Dementia. So, it is not a huge shock, BUT theirs did not take them down this quickly. Which there could be some "mini TIA's" happening, mini strokes, and we would really not know that for the most part.
Anyway, rather than drag this out, I know some of you have become "friends" on Facebook with me, and I am of course a friend on our Class of 78 Facebook page, so I also enjoy keeping up with everyone plus remembering "Ennis" and things we had and did as kids here, that are now just memories. Anyone, that may know of someone who would have known Dad and Mom, or myself, as I said I felt this maybe this best way to "inform" the few people we know and most of our relatives have already passed away.I am in Ennis and have been back almost 11 years from Seattle. I know a few did not even realize that. I will of course have something posted on the Keever's website once we reach that place, etc. But, mainly I wanted to get the word out, because this happened so quickly, and we don't have much family etc left, so I felt this would help to get the word out to those who wanted to know..... Pam Ravishing Rhiannon Steele
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| The last pic of the 3 of us in 2004, before my Dad passed away... |
Friday, June 3, 2016
UPDATES THANK YOU'S AND EXPLANATION AS TO WHAT IS HAPPENING IN THIS NECK OF THE WOODS...
Congrats to My AWESOME GRAND DAUGHTER!!!!!! Heather I am so INCREDIBLY PROUD OF YOU :):) As you move forward in your life may nothing stand in your way, of you following ALL of your Hopes and Dreams! You are truly a Treasure and I could not ask for a better Granddaughter, and those two wonderful brothers of yours ;) Have fun, be safe, and live your life as if you are on top of the mountain! Nana Pam
Just a quick "Hello" and thanks all. Today is such a mixed day mentally, physically and emotionally.. I SO wanted to be at my GRANDDAUGTHER'S GRADUATION TONIGHT NEAR CORPUS, but alas with Mom as she is, and the WEATHER making life hellacious for everyone just about, I had to postpone my trip. Then I hate to whine, but MY BACK, LEGS, BUTT AND HIPS ARE ON FIRE!!!! after I got Mom in from the hospital night before last... dumb move on my part, but stubborn I guess shows me I should ask for help... at the moment I did not have one clue who to ask... but she is resting well. The aide came and got her all cleaned up, and I gave her all of her "comfort" medications, got things done there, and I just had to come to "home" for a bit, for the puppies, for me, and I need to get off my feet at least for a while.... love to all... and I am totally more than exhausted... so if I don't post, or accidentally don't answer the phone etc... I am just totally out of any "brain wave" at the moment....
Before it slips my mind, A HUGE CONRATS!!! to my incredible
granddaughter today!!!! HEATHER YOU ARE SUCH A WONDERFUL YOUNG WOMAN,
AND AS YOU STEP OUT INTO THE WORLD OF COLLEGE AND BEYOND, MAY YOU FIND
ALL OF YOUR DREAMS COMING TRUE... I SO WISHED I WAS ABLE TO COME, BUT OF
COURSE BETWEEN GRANNY STEELE, AND NOW THE WEATHER SO HORRIBLE, I HAVE
TO POSTPONE, BUT MY HEART AND SOUL WILL BE WITH YOU THIS EVENING!!!!
Love to you... and love to your brothers, Logan, and James... and also
to your Mom, Amanda Batson- Matheny and Dad Jimbo!
Thursday, June 2, 2016
Update on Mom the Alzheimer's, getting home from the hospital and of course hurting my back again, and so forth....
You are all such a blessing, and know you are so loved and appreciated... Mom and I had "hell" getting into the house last night. They did not officially discharge her till like 6PM! And I had to get her into the house by myself, so with her having having both back and front, I chose the back, with two lower steps, and using her walker, we very SLOWLY and with a few "choice" words, LOL, made it into the house, and finally to her bed. Hospice DID come by last night around 7PM, I was so shocked, I did not expect a nurse by, plus they had a courier bring some stronger pain medication for her, and now all of her medications will come via courier.... so that will be easier... of course now Hospice has taken over for the doctors etc as far as the dementia, and anything "to do" with that diagnosis, etc for now.... so I am hoping it will "settle" down a little... I really did a huge NO NO though - I injured my LOWER back, which already needs surgery, between all of the walking yesterday back and forth, our hospital is laid out so stupid, and you have to walk what seems like a mile just to get to patient's rooms, but then getting Mom in the house, I did a real number on my lower back and my neck.... I got her settled in and came home very early this morning to do some stuff done here, that I have to do and then I will head back over there, because her Social Worker, Aid, and so on will be coming sometimes after 8AM I gather... so it will be another day of hell I think, just being up on my feet, and getting stuff in order and so on... but now the Ensure, pads, Depends, and any and all "medical stuff" she needs, they will automatically bring us. and I no longer have to be picking those things up, including I gather most of her "meds" ... not sure if it is all of them yet, but ones that go along with the hospice diagnosis they will get and have brought to me... which is some help... then they have a list of people I can have either come "sit" with Mom in the week, night, day, etc for a few hours, some volunteer, some I will have to pay, but I can still go with ""Home Instead" which is a "sitter service" BUT they will have someone there, and I don't have to worry over if I get sick, or need to be away, and someone HAS to be with Mom, even though it means paying for them, they are bonded and so forth, I've met with one of the main case workers already.... and it is MUCH less although not cheap, than putting her in a nursing home, which means about at the lowest 3,000.00 a MONTH for room and board.... so hopefully we can keep her at home, where she REALLY wants to be, and hydrated, and well enough to avoid the hospital again... I can't say how much I appreciate all of your thoughts and prayers... and I need to get busy getting things done here, etc... but I will post when I can... Love to all of your guys and gals, Rhia Steele "All things Autoimmune"
Saturday, May 21, 2016
FINALLY, A Beautiful Day, more Wondrous than I have had in literally months and months!! Family, time away as a caretaker, as a patient, & feeling somewhat "normal" for at least a day or two.....
FINALLY WHAT IS AND HAS BEEN AN INCREDIBLE DAY IN SPITE OF LUPUS, RA, SJOGREN'S, DEMENTIA, AND ALL OF THE OTHER HORRID DISEASES AND CHRONIC PAIN!
This has been and is one of the BEST DAYS and BEST WEEKENDS that I've had in a very, very LONG TIME! It is so awesome to have my daughter Amanda and her hubby Jimbo, as well as my son Jason all together in the same space, and be able to have a wonderful lunch (I ate way too much) and just enjoy one being together.... I surely so NEEDED this, and I know for them it is truly important to them also. Plus, although yesterday was a "rocky" start with Mom, I will explain more later, she did finally EAT, yesterday afternoon, and a bit more than usual. :))
She has not eaten in days again, other than drinking the Ensure, so seeing her actually eat and enjoy the food, although a very small amount, it was a blessing. Plus, we know she really does not for the most part know who any of us are, even me, I think she did have some lucid moments over the past day or so, and did understand the three of us were there today and were visiting her.
The road to getting help is my next feat, I HAVE TO GET HOSPICE in there! I had to turn her mattress completely over due to now we are having "accidents" in the bed, that I did not know about, until yesterday... so I bought some of the "Depends" or as Jim and I used to call them "OOps I crapped my pants" underwear... LOL... right now she sometimes just I think does not realize she needs to get up to pee... that is our issue at the present.... so after buying new covers, pads, waterproof for the mattress, and all plus I put some under pads beneath her, so that way, we don't have her laying in urine, and causing sores... we don't need bed sores for sure.... but again, I am so proud of both my son and daughter, and I hope they know just how much I love them, and every day wished that we could be "closer" as far as our distance away in miles from one another... but sometimes life does not "give us" what WE think WE need, it deals out what for one reason or the other WE NEED, and don't know why.... and I also thank my friends for all of their love and support! Rhia
This has been and is one of the BEST DAYS and BEST WEEKENDS that I've had in a very, very LONG TIME! It is so awesome to have my daughter Amanda and her hubby Jimbo, as well as my son Jason all together in the same space, and be able to have a wonderful lunch (I ate way too much) and just enjoy one being together.... I surely so NEEDED this, and I know for them it is truly important to them also. Plus, although yesterday was a "rocky" start with Mom, I will explain more later, she did finally EAT, yesterday afternoon, and a bit more than usual. :))
She has not eaten in days again, other than drinking the Ensure, so seeing her actually eat and enjoy the food, although a very small amount, it was a blessing. Plus, we know she really does not for the most part know who any of us are, even me, I think she did have some lucid moments over the past day or so, and did understand the three of us were there today and were visiting her.
The road to getting help is my next feat, I HAVE TO GET HOSPICE in there! I had to turn her mattress completely over due to now we are having "accidents" in the bed, that I did not know about, until yesterday... so I bought some of the "Depends" or as Jim and I used to call them "OOps I crapped my pants" underwear... LOL... right now she sometimes just I think does not realize she needs to get up to pee... that is our issue at the present.... so after buying new covers, pads, waterproof for the mattress, and all plus I put some under pads beneath her, so that way, we don't have her laying in urine, and causing sores... we don't need bed sores for sure.... but again, I am so proud of both my son and daughter, and I hope they know just how much I love them, and every day wished that we could be "closer" as far as our distance away in miles from one another... but sometimes life does not "give us" what WE think WE need, it deals out what for one reason or the other WE NEED, and don't know why.... and I also thank my friends for all of their love and support! Rhia
LOL!!! For some very Odd reason this just seemed like the photo to publish!
CNN Stigmatizses Chronic Pain Patients in National Pain Report by Paul Gileno
FOR ALL of us that are Chronic Pain Patients, Caretakers, family members of those who suffer from so many different types of Chronic Pain, many of us daily, and without our medications, along with other ways we "fight" against this epidemic, seeing that the CDC and the government is NOT on our side is frightening and down right wrong!
Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.
Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.
It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.
I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!
So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!
http://nationalpainreport.com/opinion-cnn-stigmatizes-pain-patients-8830432.html
Those that do not understand chronic pain, from so many different types of illnesses, have no clue what happens to our "daily quality" of life. We would not be able to function normally, from taking care of our families, children, working, doing our shopping, going out to eat on a Friday evening, or even sitting with the family at home enjoying a movie. Chronic Pain without medications and treatments put each of us in a place of "NO life"... we would be sofa or bed ridden, we would not be able to cook, clean, do our yard work, shop, take our children to school or participate in the many, many activities that people that do not know what this type of nagging, gnawing, type of horrendous pain is like.
Many of us understand "acute" pain, from a broken bone, broken rib, from surgery, from an accident, which after a few days or week or so, that pain is gone once that heals. But, those of us with Diabetic Neuropathy, severe spinal pain and sciatic nerve pain, pain from the many Autoimmune Illnesses such as RA, Lupus, Sjogren's, Autoimmune arthritic types of pain, osteoarthritis, neck pain, pain from so many different types of problems that does NOT go away, that it stays with us throughout the rest of our lives... THAT IS THE SOMETIMES INTRACTABLE pain I am speaking of.
It always floors me when someone says, "You don't look ill?" Well, I, like most, do not like to go out in public looking like "death warmed over" as the saying goes. We "try" to put on our "best face"... to try and move through the pain, so we can appear to be "normal, even though our lives, our physical, mental and emotional states are far from normal. There is cancer pain, which in all ways is chronic, when it becomes "incurable". There are problems with bladders that can cause horrid pain, and it also an autoimmune illness. Up until I was "diagnosed" formally with RA, Lupus, Sjogren's, Raynaud's, and so forth, I had Migraines, and those were enough to cause me to have to after 25 or more years fighting them, had to quit working. They were so often and so severe, that I missed way too much work due to those. Then came my joints "falling apart" before I was even 35 years old... "arthritis" and people say how can someone so "young" have that had of arthritis that "eats away" at the joints. Well, we now know that infants can have RA, Juvenile RA, and some of them as young as 9 months old! So imagine, an infant so young, and the parents realizing that this hell of a disease shall effect their child or children for the rest of their lives.
I have always said, for anyone especially those in Congress, in the CDC, and so forth, that would like to "walk a week or two" in my or many others shoes with these illnesses would be screaming out for anything to relieve the pain!
So, the article below is just one example of how we still do not have ENOUGH EDUCATION IN OUR GOVERNMENT, in our NATION and around the World about ALL of these diseases that bring on severe, chronic, daily pain!
http://nationalpainreport.com/opinion-cnn-stigmatizes-pain-patients-8830432.html
Friday, May 20, 2016
TODAY IS Lupus Awareness Day and Clinical Trial Awareness Day!!!!!!
http://www.lupus.org/action/put-on-purple-toolkit |
http://curec.lk/1rXoRqvBe Sure to Wear YOUR Purple, get the word out, through Social Media on Clinical Trials and Let's Keep Plugging away to END these horrid diseases!!! |
Saturday, May 7, 2016
Another Week of Horror, severe pain, trying to BE A CARETAKER TO MOM, when I NEED a CARETAKER RIGHT NOW ALMOST MYSELF, LIFE, AND what it decides to pitch at us!
Once again things are not well with my Mom nor Myself. I found her in the floor again yesterday around noon time. I actually think she may have not "fallen" but more just slipped out of that rocker and down onto the floor from the way things looked.... anyway, I FINALLY by getting her to sit up for awhile, and her medications, and then getting her feet under her and her walker "steady" I got her up and into the chair... the lady that is over the PT portion of the Home Health came over and of course I had to tell her about this.... and as I told her, Mom got up, walked with her walker after she was there, she was able to talk fine, she had no bruises, she did NOT hit her head, and I saw no difference from her the day before... she seems to be "fine" one moment, and the next she has no clue where she is or who I am...
so none of that changed.
So, after that woman left, I gave her the rest of her regular medications, some Ensure, something to drink and tried to get her to eat, and she of course did not want to eat again. And besides all that she stopped up the damned toliet (I have no clue what she is doing) but she did not tell me until yesterday and claimed it had been that way for a couple of days... well in among the woman being there, me trying to answer questions, trying to plunge the toliet, I finally went and got some MR. Plumber gel, poured it in, tried again, and I got it partially unstopped... but I left it and told Mom NOT to use it at all, to let it sit overnight and use the potty chair by the bed... and today, it may go ahead and unstop...
I have a "small snake" that can go down into the toliet and I know it is not very far, because the sinks work fine, I used the washer etc... and only the toliet seems to be the issue... I may have to call a plumber but I know how much they charge... last time mine was stopped up but down below my "clean out" in the yard, I poured bleach in it for days, and it was tree roots that slowly can "seep" into the pipes and fill them... so little did I know I almost had it unclogged...so when he got there, he basically ran a bit of the hand auger through there, and hell it took him 2 minutes and cost me over 100.00!!! So, that is why unless I just can't get it today, I do not want to call a plumber, especially on a weekend.... So, I was totally exhausted, hurting badly, my own lower spine is worse, and my neck, shoulders, arms and hands throb, burn and hurt so badly, I can barely stand to sit here and type... dammit the hell I am sick of this crap... but I get a call about the time I pulled up to my home from Mom's and it was the "lady" I 'thought" had been at the house earlier... and she was "concerned" that Mom falling out of the chair "worsened" her condition... and as I told her, in the first place both myself, my son feel and the woman that was there, that she really did not take a "hard fall" - it was more she just slipped out of that chair... that I have been TRYING TO GET RID of anyway... she cannot get in and out of it, it rocks and glides... and she needs to not sit it in anymore...
plus I threw out an old magazine table, that is so wobbly and old, she tried to "push" herself up on it, and I know also is an issue... in fact I threw it outside yesterday and told her it was NOT coming back into the house... anyway, this woman almost acted as if I was "not doing the right thing" with Mom... well maybe I am wrong, but I have been doing everything, and
if I remotely thought she was hurt, or in any way had hit her head, or was "worse" from this "fall" I would have called the ambulance and took her out to be checked out... but she was NOT injured, not even a bruise and in fact once she was up off the floor, got up and walked around, and so forth, she told the woman she felt "okay" and that was no "pain" at all other than her regular "back pain" that has been there for many months now.,. so I took "offense" to this woman, not knowing what took place, what I see every day of my life, what I know goes on etc... acting as if I am being "cruel" or something... honestly home health care is a "joke"... other than the "aid" helping Mom by showering, washing her hair, and changing her sheets a couple of times a week, the other 2 really do "nothing".... so I am not thrilled... I thought the entire purpose was for them to spend up to 35 hours a week with her, and be there to take some of this off my back, where I don't have to be over there 3 or 4 times every day... it is taking a toll on me badly, especially this past week... I am physically in horrible pain myself now, and when I am complaining, then it is really, really HORRIBLE pain!
so none of that changed.
So, after that woman left, I gave her the rest of her regular medications, some Ensure, something to drink and tried to get her to eat, and she of course did not want to eat again. And besides all that she stopped up the damned toliet (I have no clue what she is doing) but she did not tell me until yesterday and claimed it had been that way for a couple of days... well in among the woman being there, me trying to answer questions, trying to plunge the toliet, I finally went and got some MR. Plumber gel, poured it in, tried again, and I got it partially unstopped... but I left it and told Mom NOT to use it at all, to let it sit overnight and use the potty chair by the bed... and today, it may go ahead and unstop...
I have a "small snake" that can go down into the toliet and I know it is not very far, because the sinks work fine, I used the washer etc... and only the toliet seems to be the issue... I may have to call a plumber but I know how much they charge... last time mine was stopped up but down below my "clean out" in the yard, I poured bleach in it for days, and it was tree roots that slowly can "seep" into the pipes and fill them... so little did I know I almost had it unclogged...so when he got there, he basically ran a bit of the hand auger through there, and hell it took him 2 minutes and cost me over 100.00!!! So, that is why unless I just can't get it today, I do not want to call a plumber, especially on a weekend.... So, I was totally exhausted, hurting badly, my own lower spine is worse, and my neck, shoulders, arms and hands throb, burn and hurt so badly, I can barely stand to sit here and type... dammit the hell I am sick of this crap... but I get a call about the time I pulled up to my home from Mom's and it was the "lady" I 'thought" had been at the house earlier... and she was "concerned" that Mom falling out of the chair "worsened" her condition... and as I told her, in the first place both myself, my son feel and the woman that was there, that she really did not take a "hard fall" - it was more she just slipped out of that chair... that I have been TRYING TO GET RID of anyway... she cannot get in and out of it, it rocks and glides... and she needs to not sit it in anymore...
plus I threw out an old magazine table, that is so wobbly and old, she tried to "push" herself up on it, and I know also is an issue... in fact I threw it outside yesterday and told her it was NOT coming back into the house... anyway, this woman almost acted as if I was "not doing the right thing" with Mom... well maybe I am wrong, but I have been doing everything, and
if I remotely thought she was hurt, or in any way had hit her head, or was "worse" from this "fall" I would have called the ambulance and took her out to be checked out... but she was NOT injured, not even a bruise and in fact once she was up off the floor, got up and walked around, and so forth, she told the woman she felt "okay" and that was no "pain" at all other than her regular "back pain" that has been there for many months now.,. so I took "offense" to this woman, not knowing what took place, what I see every day of my life, what I know goes on etc... acting as if I am being "cruel" or something... honestly home health care is a "joke"... other than the "aid" helping Mom by showering, washing her hair, and changing her sheets a couple of times a week, the other 2 really do "nothing".... so I am not thrilled... I thought the entire purpose was for them to spend up to 35 hours a week with her, and be there to take some of this off my back, where I don't have to be over there 3 or 4 times every day... it is taking a toll on me badly, especially this past week... I am physically in horrible pain myself now, and when I am complaining, then it is really, really HORRIBLE pain!
SO, I have a QUESTION? DOES ANYONE KNOW MORE ABOUT "NON TERMINAL HOSPICE" or more of A PERSON THAT COMES IN AND DOES MORE THINGS SUCH AS STAYING THERE A CERTAIN AMOUNT OF HOURS A DAY? I am "wading" through the insurance to see what is covered, and what she "qualifies" for... but I MYSELF NEED A CARETAKER, AND I NO LONGER HAVE ONE, and me trying to be almost a "FULL TIME CARETAKER FOR HER AND MYSELF, IS TAKING ITS TOLL ON ME"... so if anyone knows someone here in Ennis that does that type of thing whether just "personally" or through a company would you let me know?
Sunday, April 24, 2016
"New Way" of Asking about a Patient's "Pain Level"!
I have often wondered why with all of the medical knowledge and technology we have, why someone has not invented a "new type" of pain scale.
This "1" to "10" is so totally "not really" giving anyone a true look at what a patient's pain truly is... I mean what is a "3" to someone, versus another it maybe an "8"?
If there were another way to "give someone an example of what those numbers actually meant" then I feel our medical professionals would also have a much better understanding of what that individuals pain level is. In fact just this week, Home Health Care's Nurse that came over to see my Mom for the 1st time asked her "pain level". Well, 1st of all, my Mom just over the past 6 months really began to have "serious daily chronic pain". Up until that time, she was not even sure what that "1 to 10" was. Sure, it is on the walls at the doctor's offices, hospitals and you are always asked, BUT still for someone especially in chronic pain, it can be baffling to describe what that means to that person,
So, I read an article just this week and it had a posting of a brand new way, of taking that 1 to 10 and putting "real life" examples to it, that most can relate to. Here is the chart below:
This was put out by the American Chronic Pain Association and is definitely a much better way of people stating what their pain level is, and what pain level "they" can "live with"....
Plus those with chronic pain, really do go through most of these examples throughout any one day, week, month, and year. In one day, there are times that I may feel like a "6".... but within hours, that may change for a number of reasons, and go to a "2".... and I am willing to bet MOST of us with all these different reasons and types of Chronic Pain will feel the same. I am actually going to print this, and from now on, take it to any office visit etc.... when pain needs to be described. I feel by showing this to my health care workers, nurses, doctors and such, this will make much more sense than me saying I have a "9" but I can live with a "3"... well a "3" under most circumstances is TOO MUCH PAIN to have to bear, especially by the older way of thinking... and an 8 things such as childbirth, kidney stones, severe days of RA/Lupus flares and Arthritis, and depending on what I have done or not done can make that happen, yet within a day or two, I can be at a 4.... again thougH that id NOT AN ACCEPTABLE AMOUNT OF PAIN TO LIVE WITH DAILY! IF CHRONIC DAILY PAIN, PUTS YOU IN YOUR HOME, UNABLE TO DO MOST OF YOUR ACTIVITIES, THAT IS TOO MUCH PAIN TO HAVE TO LIVE WITH!
I Hope that this "New Chart" will give you a better example as how to describe "your own pain" to your doctors. I know for me, it is definitely a better system than the old way!
This "1" to "10" is so totally "not really" giving anyone a true look at what a patient's pain truly is... I mean what is a "3" to someone, versus another it maybe an "8"?
If there were another way to "give someone an example of what those numbers actually meant" then I feel our medical professionals would also have a much better understanding of what that individuals pain level is. In fact just this week, Home Health Care's Nurse that came over to see my Mom for the 1st time asked her "pain level". Well, 1st of all, my Mom just over the past 6 months really began to have "serious daily chronic pain". Up until that time, she was not even sure what that "1 to 10" was. Sure, it is on the walls at the doctor's offices, hospitals and you are always asked, BUT still for someone especially in chronic pain, it can be baffling to describe what that means to that person,
So, I read an article just this week and it had a posting of a brand new way, of taking that 1 to 10 and putting "real life" examples to it, that most can relate to. Here is the chart below:
Plus those with chronic pain, really do go through most of these examples throughout any one day, week, month, and year. In one day, there are times that I may feel like a "6".... but within hours, that may change for a number of reasons, and go to a "2".... and I am willing to bet MOST of us with all these different reasons and types of Chronic Pain will feel the same. I am actually going to print this, and from now on, take it to any office visit etc.... when pain needs to be described. I feel by showing this to my health care workers, nurses, doctors and such, this will make much more sense than me saying I have a "9" but I can live with a "3"... well a "3" under most circumstances is TOO MUCH PAIN to have to bear, especially by the older way of thinking... and an 8 things such as childbirth, kidney stones, severe days of RA/Lupus flares and Arthritis, and depending on what I have done or not done can make that happen, yet within a day or two, I can be at a 4.... again thougH that id NOT AN ACCEPTABLE AMOUNT OF PAIN TO LIVE WITH DAILY! IF CHRONIC DAILY PAIN, PUTS YOU IN YOUR HOME, UNABLE TO DO MOST OF YOUR ACTIVITIES, THAT IS TOO MUCH PAIN TO HAVE TO LIVE WITH!
I Hope that this "New Chart" will give you a better example as how to describe "your own pain" to your doctors. I know for me, it is definitely a better system than the old way!
Saturday, April 23, 2016
The Latest Addition of my Saturday Newspaper All Things from Chronic Pain to AAI illnesses, Lupus, and so much more.... great stories today!
Latest Saturday Addition of My Newspaper "Life with Chronic Pain and AAASD's"'' LOTS of great articles from Arthritis, to AI illnesses, including Lupus Awareness Month coming up, Chronic Pain Patients speaking out about the medications they need for a quality of life and even so much more! Check it out, please forward it, and sign up to get the updates daily! Thanks to all of you, Rhia Steele "All things Autoimmune"
http://paper.li/ravishingrhia/1438808814?edition_id=1522ce40-0766-11e6-8e8c-0cc47a0d15fd
http://paper.li/ravishingrhia/1438808814?edition_id=1522ce40-0766-11e6-8e8c-0cc47a0d15fd
Thursday, April 21, 2016
Update of My Daily Newspaper - and also an "Update" on just how Insane" a disease like Dementia /Alzheimer's Truly is.....
It really DOES for the most part have many articles and information relating to our AI, RA,FM,Chronic Pain, Lupus and so forth, because am able to "pick and choose" what types of information is printed in it daily. So, I have chosen the specifics of what I know many here are dealing with.
Now I have added "Dementia/Alzheimer's" to the "pot" of things that bring in articles. Never would I have ever in my life thought that about 9 months ago, my own Mom would go from doing her own grocery shopping, driving to church, doing her own house work, cooking, and I just helped with other things... to NOW... she at times does NOT even know WHO I AM, nor that she is in "our home". She cannot go and fix much to eat, I have to make sure she eats, drinks and takes her medications properly. She cannot shower or bathe herself, she cannot clean her house... and she has not driven her car in over 2 months maybe longer, nor been to church... she cannot "operate" her oven, stove, washer or dryer, and honestly the phone (regular home phone) she at times does not know how to use it... she stays in bed more than not, and the list just goes on and on and on... of what in such a short amount of time, not just "mentally" but physically incapacitated these illnesses can be...
I am of the belief she has a "certain" type that unlike many, starts gradually... and for a couple of years there were "signs" but to go down hill so quickly. It is a "fast type" of dementia called Creutzfeldt-Jakob Disease .... honestly I hope and PRAY I AM WRONG, because usually it comes quickly, and they pass away pretty soon for the most part, and I am wanting my Mom to go with me like we did just about 4 MONTHS ago to the Casino overnight!!!! She "cut up" her players cards and said she would never be able to again... plus she went from no cane and no walker, to a cane, and within weeks to a walker... and we have to watch her, she now has problems with balance and is a huge fall risk... she has not clue how to pay a bill, she does not even go outside, check the mail, or anything, but due to her falling right now it is best she does not go out... she has several steps down in the front to go down...
I am totally exhausted, worn out, drained, and in almost a "state of shock"r" for the lack of a better term right now, mentally, physically and emotionally now... I have to go over every day and really should be there more, but I have of course my own home, my pups, and me to take care of also.... WE NEVER KNOW!
Saturday, April 16, 2016
Thursday, April 14, 2016
MORE CRAZINESS INVOLVING the CDC and them NOT WANTING DOCTORS TO ASK A PATIENT ABOUT THEIR PAIN LEVELS AS FAR AS A 5TH VITAL SIGN!!!! JUST PURE INSANITY!
Please read and sign the petition below to President Obama and how you feel about this Opioid bull!!!!
http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336?xid=nl_mpt_DHE_2016-04-14&eun=g773630d0r
This is titiled "TO STOP DOCTORS FORM ASKING ABOUT"A FIFTH ISSUE WHEN YOU GO TO YOUR PHYSICIAN, AND THAT IS ASKING ABOUT YOUR PAIN, AND PAIN LEVEL!"
http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336
Talk about another load of CRAP!!!! If a patient comes in with anything that a physician KNOWS causes pain, why would they NOT ask the patient what their pain level was, had been and what is "tolerable?" I am SO SICK of the CC, the government, Congress and all of these "opioid fearful people causing havoc for us Chronic Pain patients who like myself when I go to my Rheumatologist Friday, HE SHOULD want To KNOW my PAIN, then, the past few months and what is TOLERABLE? How do we or HE know if my MEDICATIONS ARE WORKING? If he does NOT ask the Questions about pain, the inflammation, and so forth he would NOT know... this is simply ridiculous!
This is purely incidious! How can a doctor NOT ask a patient who comes to see them especially with any illness, whether chronic or acute what their "level of pain is" as a "vital sign"? In the first place, if you leg is broken, or you are having heart problems such as a heart attack that in itself can cause PAIN!
Then take Pain Doctors who see chronically ill pain patients, or like above my Rheumatologist who bases a portion of their "diagnosis" updates on how a patient's pain level is, whether worse, better, the same, and so forth... I swear with each day, and each article I want to fly to Georgia and tell the CDC, along with being in Congress, my story, then ask them, HOW LONG THEY WOULD GO WITHOUT ANY PAIN MEDICATIONS IF THEIR SITUATION WAS LIKE MYSELF AND MANY OTHERS? If they have a loved one that is in severe pain from a spinal injury, or chronic severe disease, or has Lupus, RA, and even osteoarthritis, as my Mom can testify lately, causes her SO MUCH PAIN, without a pain pill, SHE LITERALLY CANNOT GET OUT OF BED AT ALL, PERIOD! I felt she may "pass away" on Monday, because I got there and she was in so much pain, AND APPEARED TO BE SO ILL, I FELT SHE WOULD NOT MAKE IT ANOTHER DAY!
I GAVE HER, her pain medication properly, her other medications for her blood pressure and so forth, and made sure she had some beside her with direction on when to take them, and by TUESDAY, she was UP AND OUT OF THE BED! Yesterday, she was up and able to do a "few things" rather than be CONFINED TO A BED! So, I want the CDC TO EXPLAIN WHY I WOULD ALLOW MY MOM TO SUFFER NEEDLESSLY TO THE POINT SHE WAS CONFINED TO HER BED, WHICH WOULD ONLY CAUSE MORE HEALTH PROBLEMS, AND POSSIBLY SEND HER TO THE HOSPITAL, RATHER THAN MAKE SURE SHE TAKES HER PROPER PAIN MEDICATION????? I am SICK TO MY STOMACH, AT THIS CRAP OVER ABUSERS, AND USERS... WHO FOR THE MOST PART BY THE MEDICATIONS VIA THE BLACK MARKET, OR FROM OVERSEAS, AND NOT FROM A REPUTABLE PHYSICIAN!
THOSE THAT SELL HEROIN, ALSO HAVE THEIR HANDS ON EVERY TYPE OF MEDICATIONS, WHETHER THEY BE OPIOIDS, AND DOWN THE LINE... AND THEY CERTAINLY ARE NOT GETTING THEM FROM A REAL PHYSICIAN... THEY ARE GETTING THEM THROUGH SOURCES AND SELLING THEM ILLEGALLY TO THOSE WHO CHOOSE TO ABUSE!!!!!!
I want to SCREAM OUT to these fools that THE MAJORITY OF US ARE NOT ABUSERS! We are people that NEED TO BE OUT OF THE BED AND LIVING OUR LIVES LIKE MY MOM! AND, our medications do NOT REMOVE ALL OF THE PAIN... but MAKE IT TOLERABLE ENOUGH TO GO ON for the most part. I STILL LIKE THIS WEEK, HAVE MY DAYS THAT THE WEATHER, WHAT I HAVE TO DO THAT WEEK, from TAKING OUT THE TRASH TO THE CURB, TO SOMETIMES JUST HAVING TO RUN TOO MANY PLACES FOR ERRANDS FOR MY MOM AND I... AND IT WILL PUT ME DOWN FOR A DAY OR TWO, OR THREE... BUT I CAN TELL YOU I would be DEAD, and in ASHES, if I HAD TO LIVE EVERYDAY IN THE SEVERITY OF PAIN with NO medications! There is NO WAY MY BODY could WITHSTAND THAT SERIOUS AMOUNT OF INTRACTABLE PAIN!!! Pain EFFECTS YOUR HEART, AND OTHER REALMS OF THE BODY, and my BODY WOULD GIVE WAY, AND I PROBABLY WOULD HAVE A 3RD HEART ATTACK IF I HAD TO LIVE IN SEVERE CHRONIC PAIN EVERY DAY!!!! SO PEOPLE GET A GRIP AND LEARN THE TRUE FACTS OF THE STORY... WE KEEP HEARING "ONE SIDE" AND NOT THE OTHER......
Thursday, March 31, 2016
What A NIGHTMARE FOR CHRONIC PAIN PATIENTS, FAMILIES, CARETAKERS... THE CDC, TRYING TO GET CONGRESS INVOLVED & Just how Insane all of this is!
HAVE ANY of YOU that are in CHRONIC PAIN or are interested in CHRONIC PAIN ISSUES due to being a caretaker, or having a loved one that deals with CHRONIC PAIN SEEN THIS????!!! Talk about ONE GARBLED BUNCH OF bureaucratic RED TAPE GIBBERISH, THAT BY THE WAY THE CDC IF YOU DO NOT ALREADY KNOW IS getting CONGRESS in on all of this, and CONGRESS could PASS LAWS OR BILLS that MAY INHIBIT OUR PHYSICIANS and how they treat PATIENTS!!!! The GOVERNMENT SHOULD HAVE NO SAY in how our physicians treat patients with ANYTHING!!!
I was just blown away by this... I have read all of the other things going on but when I FOUND THIS, it made me so upset and so mad, I am definitely going to write to my Congressmen and Women and let them know exactly how I feel about this. I am watching MY OWN Pain Doctor who has been seeing me for almost 9 T+YEARS and has NEVER hesitated to do what was necessary to keep my chronic pain level as low as we could so I could function in a daily world, take care of my home, my MOM, and have some "quality of life". Yet NOW I have noticed SUDDENLY he seems HESITANT or like he is upping my "pain pump" meds very slowly after me having the pump since 2010!!! He replaced it on Dec 29th, 2015 after it had a motor stall, and he has yet to get my medication level back up to where it was.
NOW, I WILL SAY my pain seems to be a "bit better" since I have been on the Minocycline for the RA/Lupus. It has been about 3 or 4 months and since we are doing the pump meds slower in upping the doses, I have noticed it could be I may not need to have the pump set as high as it had been which is awesome! BUT, I also am concerned deeply about his "manner" about it all now. Suddenly, since this CDC mess started even he seems like he is being even more overly cautious about the medications and how much I need.
Now, he is very willing to up it more even next week, if I am still not at a comfortable enough level, so I can say he is not giving me any issues such as that, but it is just what he says, or more "what he is NOT saying" that really has me concerned. So, I wanted to post this, and I will put it up on my blog, and my other Facebook pages, and I am going to try and have this as an article on my newspaper (which by the way, will be "linked in" with my blog soon)... but I just almost fell out of my chair when I began to try and wade through this ridiculous mess, and see what the CDC is doing... and they are "lumping" people together... for instance, if someone had been on a prescription pain medication THEN went to something such as heroin, rather than say that MANY of them get those "prescriptions medications" off the streets NOT FROM DOCTORS!
So, it makes it sound like MANY more get scripts and then go to heroin from their physicians and that is just wrong! If they got down to the line of whom gets "illegal prescriptions off the streets" then decides to go to heroin, due to it being cheaper etc... those people should NOT be COUNTED into those who go to illegal drugs after taking prescriptions from doctors. So, their "numbers" are "skewed" as to those types of facts. So, just coming up and saying "so many thousands" go to illegal drugs after opioids that are "legal" is not correct.
And are they taking into consideration the number of those who are in "chronic severe unrelenting pain" who cannot get help from doctors, that decide to commit suicide? I have had over the years several people ask me directly, How do you live and try and have a life with that much chronic daily pain? Then They add" I believe" I may just jump off a bridge, or kill myself before I could live my life like that!?" ALL of us NEED to write our Congressional Leaders, get our physicians involved, get our family members, friends, those who have chronic pain, and know they would not have a life or a quality of life without the proper medications.I DO NOT believe in "quacks" that just hand out medications of any type just to get people into their offices for money! Those that do that to rip off Medicare, Medicaid, Insurance Companies and "their patients" should be removed from being a physician. I also do not believe that some "so-called" pain management clinics are "truly" what they say they are. When I walk in to a physicians office, that is "supposed" to be a Pain Clinic, and everywhere you see a sign stating "We do not prescribe pain medications" to me that is a red flag warning that something is wrong!
Then DO NOT call your "clinic" a "pain management clinic" if you are not offering ALL TYPES of pain management, whether it be, alternative things, therapy, acupuncture, and other types of pain management items, injections and so forth... but that should be NOT considered "pain management".
There definitely needs to be a "different name" for those who ONLY OFFER "alternative" ways of pain control. It is misleading to patients, and unfair to us that think we are going to someone who can help us with pain, whether medications of any kind are involved or not, if the first thing you see is that you do NOT prescribe pain medications. It could be that "opioids" may not be needed, and there are certainly other types of medications, such as muscle relaxers, meds for certain types of nerve pain, NSAIDS for those who can take them, Migraine medications etc... so the "host" of pain control medications are NOT ALL "narcotics"..... This is a HUGE PROBLEM that needs to be resolved. And I know there are people who "abuse" the system. They are NOT legitimate patients and they get medications for other reasons other than for real chronic pain. BUT, the THOUSANDS OF US who are TRUE PAIN PATIENTS should NOT BE PUNISHED due to those who "choose to abuse"...Rhia - PLEASE Do your own research and take time to write, call, email your Congressional people, the CDC, and spread the word through your own Social Media Networks!
Here is the link to this bunch of garbled mess from the CDC!
http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm
These photo's of my legs, and the abscesses are just more of a small "portion" of suffering from the pain, and all of the other complications from Lupus, RA, Sjogren's and so forth... We "NEVER FOUND OUT" exactly why all of these appeared on me... but it took over 2 YEARS for it to all clear up.... They just told me after I went through every test and specialist that it was the Lupus... and then the cellulitis below that turned into abscesses on both of the tops of my thighs tool=k over 6 MONTHS to finally "heal" and now I have two huge terrible looking scars from them... and talk about pain... I had to go for 8 weeks once a week to a "Wound Care Specialist" in Dallas, that debrided those every week, in other words "cut out all of the dead materials and put special material in them that was a "collagen" to help "fill in" and heal those very deep wounds... at first they were about 3 inches deep and at least 2 to 3 inches wide...
Below are the wounds from the cellulitis that both turned into abscesses.... and in between me seeing them, I had to clean these myself, pull the packing out and redress them daily... I was on 2 different antibiotics for 6 months at least... and the still look horrible... I love spring and summer, but I dread having to have people "see" what they look like now....
Wednesday, March 16, 2016
Nightly News, the CDC and Those that have NO CLUE what "Chronic Pain" and trying to Live is all about!
As
I said on my other post, I was so mad at the Nightly News with Lester
Holt last night I could have screamed! They only tell a "piece" of the
story, NOT the stories of us who would not be able to have a "life" or
any quality of life if we were not able to have physicians help us take
our pain down to where we can "stand it"... For ONE NO medication "takes
all of the pain away".... but it does give us a place where we can
"live" with it. It makes it bearable, most days. And for
them to sit there and speak like this is something that is just a
"surgery" issue etc...without even mentioning how many of us would not
be able to take care of our families, work, do anything at our homes,
nothing... we would only be able to sit, lay, or try and "live" with
severe pain, that is what I call intractable and unbearable! without my
great physicians and my medications, and that is not just pain
medications, but my RA meds, my heart medications, Lupus medications,
and so forth, I would have no life, I would never be able to take care
of me, and certainly not be able to somewhat help my Mom... and try and
do advocacy work, and write... my life would NOT be life but living
hell! I am seriously thinking about writing the Nightly News and telling
them how I felt about their "one sided" view of this situation.... and I
have to wonder "whom is lining" whose pockets, when it comes to the
CDC, Congress and all of these people that have NO CLUE what it is like
to have a disease that brings on such an amount of horrid pain daily...
they would think differently if it were them or one of their loved
ones...
This is what I am speaking of on the Nightly News from Last night March 15th
I sent my email to the Nightly News about this story last night. I hope you also take a moment to respond!
Wednesday, March 9, 2016
The Latest Addition of my New Newspaper that goes out Daily "All Things Autoimmune"
Here is the link:
http://paper.li/ravishingrhia/1438808814
Above is the LINK to the Latest Addition of my New Newspaper! This Will be Daily, and I update it sometimes twice in a day or so. It has a GREAT DEAL of the latest information about Lupus, RA, Sjogren's, Chronic Pain, Lumbar, Cervical Spine issues, along with other health information for you to read and use. I had began this kind of as an "experiment" and decided I liked it so well, that I would make this a daily, permanent addition to my blog, and my Facebook, Pinterest, Twitter and other social media informational places. It will have things about new Technology, mostly health but other forms also. I am able to choose what it has in it and "tweak" it for my readers. So, PLEASE use this link where you can put in your email address and "subscribe" to the daily addition. It will send you an update if I do an update, so you can have the latest information.
Bear with me, I am doing a "revised
" look and feel. I've upgraded so I am in a learning curve as to how to do some of the new things I want to do. But, until then I post the link daily in FB, Twitter, IN, and so forth so everyone can find the new paper for the day!
Here is a "thumbnail" of the top portion of today's paper. This way you have an idea of what it looks like right now...
Honestly, I have been quite pleased with the articles and information it provides. It has made a world of difference on researching the subjects that are important for health issues, technology and how it all effects us....
Thursday, March 3, 2016
PLEASE JOIN ME in My DAILY NEWSPAPER "All Things Autoimmune"! News you Can Use for all types of health issues... and more...
MY LATEST ENDEAVOR TO KEEP YOU, MY AUDIENCE, UPDATED ON THE THINGS THAT MATTER TO YOU AND YOUR HEALTH MOST, FROM RA, LUPUS, SJOGREN'S, TO FM, CHRONIC PAIN, AND SO MUCH MORE!
Autoimmune Arthritic Systemic Life Daily – Rhia
Friday, February 26, 2016
The Latest Daily Addition of my newspaper "All Things Autoimmune".... For Friday morning February 26th....
The Newest Addition of my Daily Newspaper "All Things Autoimmune" from Chronic Pain and the possibility of Yoga and mindfulness & the Science it, to Green Tea helping Ra (a possibility) a great deal of new information for all of you! Interesting, I drink green tea usually iced especially in the Spring and Summer months, plus I have taken a green tea supplement for years, but more for helping "weight control" due to it's boosting of your digestive system, plus new information from the CDC about about effective the flu vaccine is....
I put my newspaper out daily, and usually I update it and put it out twice daily. The subjects that I usually put out there are things about Lupus, RA, and autoimmune illnesses, BUT, there are also many articles about chronic pain, our environment, about technology, the latest in medical science and its technology and more. So, there is something for everyone in most additions...please check it out and I will post a link daily here for everyone!
Friday, February 19, 2016
The Arthritis Foundation and Arthritis Introspective - Two Creations as One to Give Us Advocates a "Voice" in Our local communities
This is only a tip of the total iceberg from a teleconference I attended last night, but I am totally thrilled about the idea!
The AF has teamed up with Arthritis Introspective to finally create ways "we" as advocates, and Ambassadors and so forth can have our own local community Outreach and Groups available for our towns and counties. I am totally thrilled about this idea and have wanted to do this now for years. So, now seems like the time to get involved in this.
Here is the link to the URL of the non-profit:
The AF has teamed up with Arthritis Introspective to finally create ways "we" as advocates, and Ambassadors and so forth can have our own local community Outreach and Groups available for our towns and counties. I am totally thrilled about this idea and have wanted to do this now for years. So, now seems like the time to get involved in this.
Here is the link to the URL of the non-profit:
They have a Facebook Page also:
I will be posting MUCH MUCH MORE ABOUT THIS OVER THE WEEKEND!
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.....
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.....
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