"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label griping. Show all posts
Showing posts with label griping. Show all posts
Friday, February 10, 2017
I was given a "press release" that I am very proud of ;)m- Goes to show ANY Advocacy Work is well worth doing especially for Chronic Pain and Illnesses
I've really been down and out lately at the numbers that are coming to my blog. Used to I would have at least 75-100 and sometimes 300 or over. But, over the past 4 months, even before I went into the hospital I noticed a huge drop in those coming to my blog.
I know "Google" have changed a great deal of their SEO stuff, BUT, I have many of their ideas and recommendations that I use. I've not went through the entire "book" of recommendations, BUT, I usually post everyday, sometimes more than once. I do miss sometimes, such as when I was "out of pocket" due to the hip fracture, but even then I still posted once I was feeling a bit better and had my laptop to post to all of my social media places.
The one thing that I have not done "much" and continue to try and not do, is get too deep into the "political" issues that are invading our lives DAILY! I know many are like myself and HOPED that AFTER THE ELECTION some of the DAILY CRAP WOULD STOP!
Well, I should have known much better than that. With the "Donald Duck" elected LOL, there is NO way to SHUT HIM UP NOR the NEWS. Everything he does, tweets, says, posts, and probably what he eats for his 3 meals a day are NOW LARGER ISSUES ON THE NEWS, THAN THE ELECTION!!!!!
I am SICK TO the point of NAUSEA hearing about "The Duck" this, that and the other.... I cannot even "type his name" it makes me so ill to see or hear about one damned thing he does.
I was a "voter" and I've voted for many years, without missing many. Of course I feel if we "vote" then we do have a right to GRIPE! But, for those WHO DO NOT VOTE, then you do not have the RIGHT TO FUSS because you did not allow YOUR VOICE TO BE HEARD!
I KNOW that my "typical" daily life may not interest you. thus I "try" my best, to put something useful, fun, information that you can use, new items from The Arthritis Foundation, to WEGO, to other health and human information especially for us that remain all too ill, from Chronic Pain and/or illnesses.
I am HAPPY that although I had TWO HIP FRACTURES, now in 3 days it will be 90 days since that 1st surgery, and I am doing very well. Even without a cane, and in fact, I left it at home yesterday and did not even take it with me.
I realize at times, I am still leery about being almost too cautious, in fear that another fall could even be worse. I also am in fear that if I don't try and do all I can to "never cure" the osteoporosis, BUT try and build "muscle" and "put protein" back into my body, I have a far better chance of not being a "fall victim".
The woman that was in the room at the Rehab place with me for part of the time, had already been in the hospital like 3 times BEFORE CHRISTMAS, IN LIKE 3 MONTHS! She had pneumonia a couple of times and was put in for that. She has also been a "Diabetes 1" victim since being a teenager, which I watched even after all these years, especially without a proper diet like she should have had in Rehab, she was always having way too many problems with her Diabetes. Then she had fallen and been in Rehab before Christmas I guess in August or September, then fell broke her pelvis, WHICH SURGERY OFTEN CANNOT REPAIR A BROKEN PELVIS, thus you have to spend WEEKS AND WEEKS IN BED TO ALLOW IT TO HEAL ON ITS OWN! Her pain had to be horrible. I know HOW MUCH PAIN I WAS IN WITH THE FRACTURES TO MY HIP, and I was yelling, screaming, cussing, bitching, crying and my entire neighborhood probably thought someone was attacking me, or I had just lost the rest of my mind. MANY of them came when they saw my son's vehicle here to ask what happened, that I was SCREAMING AND CRYING SO MUCH, they could not imagine what had happened. No one I guess heard me screaming and yelling and crying, while I was still in the house for over 3 hours, being too stubborn to call the ambulance. I "hoped" I had a "bad bruise" NOT a damned brake to my hip. But, alas dammit the news was worse, because I had TWO breaks in it.
I cannot begin to even express "ALL I LOST" in those weeks and weeks, through the surgery, through being an inpatient in a Rehab Center, from my own self-esteem, pride, I felt unworthy, useless, a burden, and just a totally screwed up person to be going through this and making my kids go through this also.
LOTS played into my issues with the entire thing, because of losing Mom to Lewy Bodies Dementia in June of last year, and having to take care of her, the 6 months prior, I was already more than behind on "caring for me"... I cancelled neck surgery at least 4 times, and just put my RA medication on hold, since I just felt I COULD NOT leave and go to Dallas for a few hours.
I AM STILL trying to "clean up" everything that needs to be done, and actually am totally confused, because I feel I did not "grieve" enough before trying to begin taking care of other affairs once she past away, that now I get to a place I am not sure what, what not, which, how, is done, not done, and my own "Christmas Present" to myself, is still sitting in my hallway, along with the new rug for my living room. But, now with the hip thing, I fear trying to turn the old sofa over in order to get the backs off of it. That is what has to be done, before it can be taken out of the house. Once that is gone, I can once again clean the hardwood floor very well, put the rug down and get my new sofa/futon/chaise lounge finally put up and using it.
So, NO the political issues I speak of are usually tied into "medical things".... whether clinical trials, or laws, or trying to get the government to fund certain research projects, and so forth, my "own personal beliefs" in whom should be or not be President, and so on down the agenda, I feel I did my part, I can now bitch all I want, AND then go on with my life and pray we have NO ALLIES by the time one YEAR has gone by with the "Donald Duck"....
P.S. I WILL POST THAT PRESS RELEASE AS SOON AS MY NEWSPAPER PUTS IT OUT.
Wednesday, August 12, 2015
RA, Lupus, Chronic Pain - the Complexities of Living With an Autoimmune Illness and/or Chronic Illness - How Do you Live with the all too often feelings of "guilt" of not fulfilling your destinies...
As you can see the very "title" of this post is complicated, to say the least. As I've had to succumb over the past almost 3 weeks of cellulitis, strong antibiotics that totally messed my entire digestive tract up, to the addition of a "stomach bug" that is going around here locally, I find myself full again of guilt, of shame, of feeling as if I am letting my obligations down as an advocate, a "voice" for others, of my own writing, my blog, my Mom, and everything else that I've had to "put on hold" due to once again the "arrows" of dealing being chronically ill.
There is NO EASY part to being ill with some disease that is so often "invisible", that drags you down within a few moments totally catching you off guard. One moment I maybe feeling great and within hours I can be immersed in sickness, more medications, doctors visits, and so forth that drive me to the sofa, rather than here online, or out and about doing all of the other things that are SO crucial to me in life.
I cannot even begin to count the numerous times that I have the sinking feeling of "letting these diseases" rule and ruin my life. Being ill with something such as an autoimmune disease(s), you feel as if those totally reign over and above any and all plans, decisions, and destiny that you have for your life. They control the very essence of daily living. From whether I feel like going to do shopping and errands, take my Mom out, or to a doctor's appointment, washing my car, cleaning my home, taking care of ALL the things like my flowers, my lawn, having the energy to even re-pot a plant, or give the pups a bath... sometimes just giving "me" a shower can be overwhelming.
No one ever gave us 150% PROOF from the moment we take that first breath that life will always be filled and fulfilling... and that we will live and love without illness, with out difficulties in life, and sometimes the "hopes and dreams" we have had turn into a totally different way of being, that we ever expected. I have not done a "real investigation" but I would bet the number of relationships that "withstand" the all too often complicated life of living with someone chronically ill, that remain SIDE BY SIDE together... is quite low. I am most assured, as with cancer patients, sometimes a spouse, or dear friend, even a family member can reach a place they just can't cope with all of the complex nature of constant doctors, meds, surgeries, procedures, sudden illness... is can certainly be like the "elephant" in a 12 by 12 foot square room, quite OVERWHELMING...
I sometimes see the frustration even in my physicians faces, when I come in with something that is so complicated and complex, they themselves may not be sure what step to take next.
I am not one to "gripe", "Whine", complain, or even remotely think the "my medical issues" are "worse" than other people's... Pain and/or Chronic Illnesses mean different levels of frustration than others. I have had so many people tell me first of all that I am the "strongest" person (emotionally and mentally) they have ever seen... yet, honestly I don't feel that way. What I try to do, if at all possible, is to put "my feet" in that other persons shoes... if you can remotely imagine what someone else is going through, all too often, it makes your health issues seem small - and I am NOT discounting that yes, I am have several very serious health problems, and have been through some extremely difficult and serious surgeries, procedures, medications and at times any and all of us, including my own physicians, maybe puzzled and perplexed about certain things that happen to me as far as on a medical level. "Who woulda thunk it"? that I would come down with "cellulitis".... and in fact, we "think" - my PCP and myself, that I had a case of shingles about 7 weeks ago or so... they had cleared up by the time I saw my doctor, but the small scars were still there, lined up almost in a row after row inside of my right knee, and when I explained what they had been like, he said that it more than likely had to be shingles... nothing else as far as some type of a rash would have came up in that kind of specific "pattern" as they did... and I have this uncanny "act" of I will be on a medication for one thing, and it so happens, I may come down with something totally unrelated, yet the medication I am on, will help that also. The "shingles" were that way... I had asked my PCP to be put on a daily dose of Valtrex. Since I started the journey with Lupus... I constantly am fighting fever blisters... not so much now in my mouth, but the corners of my mouth were almost a constant bright pinkish, with a bit of blistering it in. He would give me a "high dose" for 2 days, it would clear up, and then a few days later come back... well I had not even taken the "daily doses" but possibly a day, and all of a sudden here comes this "rash"... well the Valtrex would be exactly what he would have given me for the shingles... thus there you have it...
I am really down and out though since all of the illness, back stuff, Mom's back, and so forth, have kept me from writing here on my blog as much, have slowed once again my completing of my 3rd book to a snail's pace... and have just "thrown me" for a loop when it comes to ALL of the things I truly NEED to be doing... but as my Mom and I both said earlier this morning... it ALL happens for a REASON... so there must be at least a "billion" reasons that I get thrown off course, and my sails catch a wind into foreign waters, all too often.
There is NO EASY part to being ill with some disease that is so often "invisible", that drags you down within a few moments totally catching you off guard. One moment I maybe feeling great and within hours I can be immersed in sickness, more medications, doctors visits, and so forth that drive me to the sofa, rather than here online, or out and about doing all of the other things that are SO crucial to me in life.
I cannot even begin to count the numerous times that I have the sinking feeling of "letting these diseases" rule and ruin my life. Being ill with something such as an autoimmune disease(s), you feel as if those totally reign over and above any and all plans, decisions, and destiny that you have for your life. They control the very essence of daily living. From whether I feel like going to do shopping and errands, take my Mom out, or to a doctor's appointment, washing my car, cleaning my home, taking care of ALL the things like my flowers, my lawn, having the energy to even re-pot a plant, or give the pups a bath... sometimes just giving "me" a shower can be overwhelming.
No one ever gave us 150% PROOF from the moment we take that first breath that life will always be filled and fulfilling... and that we will live and love without illness, with out difficulties in life, and sometimes the "hopes and dreams" we have had turn into a totally different way of being, that we ever expected. I have not done a "real investigation" but I would bet the number of relationships that "withstand" the all too often complicated life of living with someone chronically ill, that remain SIDE BY SIDE together... is quite low. I am most assured, as with cancer patients, sometimes a spouse, or dear friend, even a family member can reach a place they just can't cope with all of the complex nature of constant doctors, meds, surgeries, procedures, sudden illness... is can certainly be like the "elephant" in a 12 by 12 foot square room, quite OVERWHELMING...
I sometimes see the frustration even in my physicians faces, when I come in with something that is so complicated and complex, they themselves may not be sure what step to take next.
I am not one to "gripe", "Whine", complain, or even remotely think the "my medical issues" are "worse" than other people's... Pain and/or Chronic Illnesses mean different levels of frustration than others. I have had so many people tell me first of all that I am the "strongest" person (emotionally and mentally) they have ever seen... yet, honestly I don't feel that way. What I try to do, if at all possible, is to put "my feet" in that other persons shoes... if you can remotely imagine what someone else is going through, all too often, it makes your health issues seem small - and I am NOT discounting that yes, I am have several very serious health problems, and have been through some extremely difficult and serious surgeries, procedures, medications and at times any and all of us, including my own physicians, maybe puzzled and perplexed about certain things that happen to me as far as on a medical level. "Who woulda thunk it"? that I would come down with "cellulitis".... and in fact, we "think" - my PCP and myself, that I had a case of shingles about 7 weeks ago or so... they had cleared up by the time I saw my doctor, but the small scars were still there, lined up almost in a row after row inside of my right knee, and when I explained what they had been like, he said that it more than likely had to be shingles... nothing else as far as some type of a rash would have came up in that kind of specific "pattern" as they did... and I have this uncanny "act" of I will be on a medication for one thing, and it so happens, I may come down with something totally unrelated, yet the medication I am on, will help that also. The "shingles" were that way... I had asked my PCP to be put on a daily dose of Valtrex. Since I started the journey with Lupus... I constantly am fighting fever blisters... not so much now in my mouth, but the corners of my mouth were almost a constant bright pinkish, with a bit of blistering it in. He would give me a "high dose" for 2 days, it would clear up, and then a few days later come back... well I had not even taken the "daily doses" but possibly a day, and all of a sudden here comes this "rash"... well the Valtrex would be exactly what he would have given me for the shingles... thus there you have it...
I am really down and out though since all of the illness, back stuff, Mom's back, and so forth, have kept me from writing here on my blog as much, have slowed once again my completing of my 3rd book to a snail's pace... and have just "thrown me" for a loop when it comes to ALL of the things I truly NEED to be doing... but as my Mom and I both said earlier this morning... it ALL happens for a REASON... so there must be at least a "billion" reasons that I get thrown off course, and my sails catch a wind into foreign waters, all too often.
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