https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/
It is from a "Creaky Joints" post...
RA pain’s rock bottom: NOT a ‘pain made me a better person’ story
and it is by:
Kat Macfarlane
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Tuesday, April 14, 2015
Sharing" Anothers Bloggers Post - and the Pain that we often fall short of talking about... that relentless endless, intractable PAIN
The link to the post is at :
https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/
It is from a "Creaky Joints" post...
https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/
It is from a "Creaky Joints" post...
Tuesday, March 10, 2015
Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares
I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.
Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.
It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.
Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.
I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.
It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.
I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.
Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.
So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.
Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.
But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....
Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.
It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.
Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.
I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.
It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.
I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.
Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.
So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.
Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.
But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....
Sunday, February 22, 2015
Medicare Reform - NOT for Just the "Elderly"!
I
join in this for several reasons. One of which is that even though many
of us at the time when we are much younger in life, never think about
needing your Medicare and Social Security benefits. You are working,
raising a family, and everyone seems "healthy"... so needing something
such as Medicare does not even probably come up unless you are talking
with your parents, the elderly people, on TV or in the news. BUT, I can
also attest, you NEVER KNOW WHEN YOU will be the one that needs
Medicare... and not at 67 or so but at 35, 40, 45, 50 get my drift???
Life can turn on a dime, and all of a sudden you are saddled with a
chronic illness that no longer allows you to work. So, where do you go?
Eventually you may lose out on your insurance as far as health wise, and
possibly not be able to even make a living, much less pay for high
medications, doctors, tests, hospital stays... and you are in a place of
living hell!!! It can happen and IT DOES HAPPEN!! I am walking
(sometimes crawling, Living PROOF) that life is not always what it
"should be".. or what you thought it would be... withing a breath's
space, things can change... and when you are needing Medicare the very
MOST in order to just have the vital doctors and medications to sustain
you... and medications run 1,000.00, 2,000.00... or you have MANY 20 or
more medications some of which are 300.00 or more a MONTH!!! There is NO
WAY most anyone can afford to pay out of pocket... so we need
change.... change for the ones growing up and working now... in order
that when they retire, Medicare and Social Security is still there for
them. OR in a month, or year, or a few years down the road when all hell
breaks loose, and you find yourself too ill to work, too broke to
afford health insurance, and you need "those Medicare benefits"... that
is when it will dawn on you... Gosh I wished I would have stood up for
CHANGE!!!!!
These three posts are what I sent in Facebook and in Twitter to my House of Representative Member and my Two Senators.... it is time to take up the lead and make change for the good of all when it comes to Medicare!
WE must stand up and let our Congress officials know how we feel when it comes to our health concerns, and how Medicare needs to be fully reformed, and will be here for many many years and people to come. We deserve great care, and our physicians and medical people that DO A GREAT JOB should be taken care of. Those physicians and other medical "professionals" who are not willing to be there to truly HELP patients don't deserve extra benefits or compensation. We have a GREAT DEAL many AWESOME DOCTORS WHO GO ABOVE AND BEYOND THEIR JOBS FOR THE PATIENTS!
These three posts are what I sent in Facebook and in Twitter to my House of Representative Member and my Two Senators.... it is time to take up the lead and make change for the good of all when it comes to Medicare!
WE must stand up and let our Congress officials know how we feel when it comes to our health concerns, and how Medicare needs to be fully reformed, and will be here for many many years and people to come. We deserve great care, and our physicians and medical people that DO A GREAT JOB should be taken care of. Those physicians and other medical "professionals" who are not willing to be there to truly HELP patients don't deserve extra benefits or compensation. We have a GREAT DEAL many AWESOME DOCTORS WHO GO ABOVE AND BEYOND THEIR JOBS FOR THE PATIENTS!
Sunday, February 15, 2015
Dealing with Aging, Chronic Illness and Another Birthday today!
All of us have to deal with aging. It is just a fact of life. If we are here on this Earth, we naturally are a tad bit older each day.
I am dealing with my 55th birthday tomorrow, Sunday the 15th (almost a Valentine's Baby). I always have a difficult time dealing with how quickly these birthdays seem to come around. It feels like I just celebrated one, and here is another one popping up.
When you have a chronic illness (es) and/or are living with chronic pain, I feel you have more of a feeling of "desperation" as the days go by. It is of course a known fact, if you are chronically ill, with just about any type of disease, that can lessen your life span depending on which illness, and how well it can be managed.
So, with someone such as myself, dealing with Lupus, RA, Sjogren's, already having two heart attacks, etc. the possibility of me living my life out to my 90's or less can be something that you have to admit may not happen. No one wants to think about growing older, and then passing away. We have so much LIFE to live, none of us want to check out of the life hotel, before we have completed all of the things we want to. Maybe it is to see your kids, grandkids, and great grand children grow up. Maybe you have things like myself, a blog, a book to write, people to see, family that you of course don't want to leave, and hobbies, activism, volunteer work, traveling, just the daily parts of life such as they are. with Autoimmune Illnesses, days may not be the greatest. You have some that are full of pain, and you would prefer not to deal with. Yet, you usually would rather deal with the pitfalls of chronic illness, than the opposite, which would be to pass onto another life.
I didn't get to finish this post yesterday, so I will finish it off for now with what I have written on Facebook this morning. I am so fortunate to have so many people around the globe that lift me up in faith, hope, and prayer... and I want all of them to know how much they mean to me.
This has been such a wonderful day so far. Other than waking up early this morning with a freaking horrid headache, that then upset my stomach as usual, I am having an incredible birthday! I went yesterday and got 3 shirts and a purse at Beall's for less than the price of the purse itself! I had a gift card from them for my birthday, plus some other good coupons. Then Mom and I stopped at the Dairy Queen and got burgers and fries. I brought ours home, so that was Jim and I's Valentine Day special. :):) Mom gave me a beautiful card, and what she wrote in it brought tears to my eyes. She has always been here for myself and for Jim, especially after the accident. Then Jim's Mom also sent me a card, and money! :) I had ordered something on Amazon that usually I never would have even tried, but it came in yesterday and they fit perfectly! I got 5 new bra's in the colors I needed for like 25.00! Plus Jim gave me a beautiful new robe this morning!!! I needed it so badly. I was ashamed to even wear my old one, it was definitely worn out.... then I got a call from Amanda Batson- Matheny and a bit later from my son Jason Harber which made my day to hear their voices and have them call was a wonderful treat... I also went and got us "no-no's" as I call donuts... we have a place just a few blocks away, and I could sit there and make myself sick, eating them. They are so good!!! :):) We were supposed to head to Winstar today. But, the weather is supposed to begin getting lousy today, and it is already really cloudy, and we are expecting a high chance of rain today and tomorrow, plus colder temperatures. So, we decided to wait to go the the Casino when the weather is a bit better. Driving in rain does not bother me if it is not too far away, but being with the idiots going through Dallas in the pouring rain, is not my biggest thrilling adventure! So, the rest of my day will probably be just relaxing with the pups and Jim. Probably going to watch a movie or two, and other than that, try and put all of the "everyday" worries aside today and not think about all there is to do, errands, running here, there and yonder... but just have a day of peace with these 3 I have so much joy with ... the pups can make us laugh no matter how lousy we feel, or how badly the day goes. Bubba Gump will raise up on his hind legs, with his front paws down in front of his face... and those big eyes just saying Mommy, rub my tummy... or the way he loves to watch television and movies. Tazzy, bless her heart, can still do some things to make me laugh... but she is really beginning to get a bit "feeble" in so many ways. She is I believe 11 years old. Jim gave her to me as a Christmas present while we were living in Seattle. That was the Christmas of 2004, because she was a year old when we got to TX. So, time has also flown by with her. It seems just yesterday, I was visiting her, with her brothers and sisters, trying to decide which puppy I wanted. She came running to me, not bigger than my hand... then ran over to Jim and began to give him kisses. From there we knew she was the one!!!! :):) She was not even old enough for me to bring home. I had to wait a week, and she got her last puppy shots, then we picked her up the next Friday night, just before Xmas. Life has just passed by so extremely fast. Day will have passed away 10 years ago on the 27th of March. Mom will be 80 in August. And Jim and I have been together now for 12 years, and will be married in April 10 years. I would not have missed one moment ever so far in my life, and I am so very fortunate to have family, a spouse, two pups, and so many friends to keep me from going insane at times. You each bring something special to my life, and even if we never were to meet in person, which of course many of us might not, you are still as much a part of my life, as if you were right next door... thank you... each and every one of you, for giving me strength, courage, hope, faith, and on the right path in life... I am blessed and overflowing... Rhia
I am dealing with my 55th birthday tomorrow, Sunday the 15th (almost a Valentine's Baby). I always have a difficult time dealing with how quickly these birthdays seem to come around. It feels like I just celebrated one, and here is another one popping up.
When you have a chronic illness (es) and/or are living with chronic pain, I feel you have more of a feeling of "desperation" as the days go by. It is of course a known fact, if you are chronically ill, with just about any type of disease, that can lessen your life span depending on which illness, and how well it can be managed.
So, with someone such as myself, dealing with Lupus, RA, Sjogren's, already having two heart attacks, etc. the possibility of me living my life out to my 90's or less can be something that you have to admit may not happen. No one wants to think about growing older, and then passing away. We have so much LIFE to live, none of us want to check out of the life hotel, before we have completed all of the things we want to. Maybe it is to see your kids, grandkids, and great grand children grow up. Maybe you have things like myself, a blog, a book to write, people to see, family that you of course don't want to leave, and hobbies, activism, volunteer work, traveling, just the daily parts of life such as they are. with Autoimmune Illnesses, days may not be the greatest. You have some that are full of pain, and you would prefer not to deal with. Yet, you usually would rather deal with the pitfalls of chronic illness, than the opposite, which would be to pass onto another life.
I didn't get to finish this post yesterday, so I will finish it off for now with what I have written on Facebook this morning. I am so fortunate to have so many people around the globe that lift me up in faith, hope, and prayer... and I want all of them to know how much they mean to me.
This has been such a wonderful day so far. Other than waking up early this morning with a freaking horrid headache, that then upset my stomach as usual, I am having an incredible birthday! I went yesterday and got 3 shirts and a purse at Beall's for less than the price of the purse itself! I had a gift card from them for my birthday, plus some other good coupons. Then Mom and I stopped at the Dairy Queen and got burgers and fries. I brought ours home, so that was Jim and I's Valentine Day special. :):) Mom gave me a beautiful card, and what she wrote in it brought tears to my eyes. She has always been here for myself and for Jim, especially after the accident. Then Jim's Mom also sent me a card, and money! :) I had ordered something on Amazon that usually I never would have even tried, but it came in yesterday and they fit perfectly! I got 5 new bra's in the colors I needed for like 25.00! Plus Jim gave me a beautiful new robe this morning!!! I needed it so badly. I was ashamed to even wear my old one, it was definitely worn out.... then I got a call from Amanda Batson- Matheny and a bit later from my son Jason Harber which made my day to hear their voices and have them call was a wonderful treat... I also went and got us "no-no's" as I call donuts... we have a place just a few blocks away, and I could sit there and make myself sick, eating them. They are so good!!! :):) We were supposed to head to Winstar today. But, the weather is supposed to begin getting lousy today, and it is already really cloudy, and we are expecting a high chance of rain today and tomorrow, plus colder temperatures. So, we decided to wait to go the the Casino when the weather is a bit better. Driving in rain does not bother me if it is not too far away, but being with the idiots going through Dallas in the pouring rain, is not my biggest thrilling adventure! So, the rest of my day will probably be just relaxing with the pups and Jim. Probably going to watch a movie or two, and other than that, try and put all of the "everyday" worries aside today and not think about all there is to do, errands, running here, there and yonder... but just have a day of peace with these 3 I have so much joy with ... the pups can make us laugh no matter how lousy we feel, or how badly the day goes. Bubba Gump will raise up on his hind legs, with his front paws down in front of his face... and those big eyes just saying Mommy, rub my tummy... or the way he loves to watch television and movies. Tazzy, bless her heart, can still do some things to make me laugh... but she is really beginning to get a bit "feeble" in so many ways. She is I believe 11 years old. Jim gave her to me as a Christmas present while we were living in Seattle. That was the Christmas of 2004, because she was a year old when we got to TX. So, time has also flown by with her. It seems just yesterday, I was visiting her, with her brothers and sisters, trying to decide which puppy I wanted. She came running to me, not bigger than my hand... then ran over to Jim and began to give him kisses. From there we knew she was the one!!!! :):) She was not even old enough for me to bring home. I had to wait a week, and she got her last puppy shots, then we picked her up the next Friday night, just before Xmas. Life has just passed by so extremely fast. Day will have passed away 10 years ago on the 27th of March. Mom will be 80 in August. And Jim and I have been together now for 12 years, and will be married in April 10 years. I would not have missed one moment ever so far in my life, and I am so very fortunate to have family, a spouse, two pups, and so many friends to keep me from going insane at times. You each bring something special to my life, and even if we never were to meet in person, which of course many of us might not, you are still as much a part of my life, as if you were right next door... thank you... each and every one of you, for giving me strength, courage, hope, faith, and on the right path in life... I am blessed and overflowing... Rhia
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo... -
I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...