Opening remarks are underway at the Advocacy y Summit with President & Founder Paul Gileno providing attendees... http://fb.me/4lxnrkEX0
Chronic Pain can take over your life, the life of family, friends, caretakers, and even cause hardships with relationships. It is truly a "home wrecker" and we have way too many people, especially in places of government that just do not understand the ills of chronic pain.
I am trying to do my part in September to raise Awareness on just how this life altering "disease" can control every move of your life, and how we need to stand up and educate others, including those around us, physicians, the medical profession, government officials, and this nation and world for that matter about the effects of pain when it becomes chronic and out of control.
As a pain patient myself, all too many times, I've been "pointed" at and felt as if I was some kid of criminal because I wanted to stop the pain... it cost me jobs early on in life (I began with chronic migraines at 17 years old)
In fact, even though I had other very severe chronic issues with my health, that finally led me at 43 years old to file for complete disability, the disability judge ruled in my favor for the number one paint of the migraines... I either had to quit a job, or after years on a job, would miss so much work with them, it led to me being dismissed from a job...
I worked from the time I was 16 years old, and yet I suffered year after year with those horrible headaches...
Ironically, the regular migraines got better about 8 years ago, partially due to my internal pain pump, but then after I was diagnosed with RA and Lupus, I began to have severe "Lupus migraines", that nothing will touch other than strong doses of prednisone...
Yet, my "chronic pain" as with many others goes far above and beyond migraines. When you deal with autoimmune illnesses, such as Lupus, RA, Sjogren's, and many others, pain is a part of your daily life. Oh, sure, with the right medications, the proper physicians, and all out there available now for pain relief, there are numerous ways to "control" pain. Yet, nothing will take it all away. Nothing will prevent it from sneaking up on you, when it is least expected, and become "intractable" or at the very least put you on the sofa, in the bed, or otherwise blindside you, when you are certainly not ready to deal with it.
When my Lupus and/or RA; along with several other health related issues decide to come calling, sometimes there is not anything that can be a cure... it may curb pain, but at that time, that is what it can do... make it tolerable... and that is very difficult to determine, because pain in itself is a complex illness and is different for everyone. What one person thinks is totally off the charts on the "pain scale" maybe at a 5 or 6 for someone else.
Each of us have the same chemical makeup when it comes to pain, but depending on the cause, what you are taking, why the pain is coming, whether from some physical ailment, such as a worn out joint, or a migraine, or from several joint problems, muscle spasms, stomach and intestinal pain, "acute" pain from an accident or illness... all have different ways of causing pain, and all have a unique way of developing.... and being treated...
"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
Friday, August 14, 2015
Thursday, August 13, 2015
Updates from the Arthritis Foundation - RA, Supplements, JRA and more...
http://blog.arthritis.org/living-with-arthritis/cope-with-arthritis/
http://www.arthritis.org/living-with-arthritis/treatments/natural/supplements-herbs/?utm_source=enewsletter&utm_medium=dedicated&utm_campaign=supplements
Support Groups and the AF
Herbs and Supplements
http://www.arthritis.org/living-with-arthritis/treatments/natural/supplements-herbs/?utm_source=enewsletter&utm_medium=dedicated&utm_campaign=supplements
Other therapies
http://www.arthritis.org/living-with-arthritis/treatments/natural/other-therapies/
News and Updates from the Arthritis Foundation!
http://www.arthritis.org/about-us/news-and-updates/
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.
Tuesday, August 11, 2015
Cellulitis, Antibiotics, MRSA, Catching Up, and what "normal" is when you battle with autoimmune illnesses
Gosh
Lord knows I need all of the prayers I can get for sure... I did find
out yesterday that this stomach mess that began last Friday maybe a
"stomach bug" going around. I spoke to my pharmacist about a medication,
and they told me that lots of people had been in over the past week or
so, with the same thing... really nauseated, feeling lousy, and be
"sick" to their stomach... I kind of thought that maybe what it was
after I spoke with Mom Sunday over the phone and she was sick Sunday
morning with about the same thing. I believe mine was a bit worse just
due to the fact, I had already had such severe intestinal issues from
the antibiotics, and I am just "worn down" from the cellulitis, not
sleeping, the heat does not help and so forth... hopefully I will NOT
encounter any more of that mess for awhile. I am still NOT at 100%
though. Yet, at least I am COMPLETELY THRU with the antibiotics. I
officially took the last 2, yesterday evening. Although the "lump" is
still not completely gone away, I think I will just see what happens
over the next couple of days. I certainly do not want another round of
antibiotics, especially since they are some they use to fight really,
really tough cases of infection. I do not want to become "immune" to
them and then not get what I may need, if so happened I did come down
with some type of very bad infection... MRSA always remains in the
background when I think about having to take antibiotics. Although my
PCP does not just hand them out for anything, but with me being more
prone to having an infection, I have had to take more than I really want
to over these past few years. I GO TO the Cardiologist this morning.
Just a routine follow up, but her appts are always too EARLY... this one
is at 11AM so not too bad, but I always prefer to have appts. very
early afternoon about 1PM... that way I have all morning to do things
and get caught up on stuff, and I don't waste time having to get ready
for a doctor in an appt that is way early... Then the rest of the week
is actually pretty quiet as far as going to doctors etc. I STILL NEED to
go have the damned Chest X-ray done... I got sick and had to postpone
it again... and I know my Rheumatologist is really wondering what the
heck is going on. Anyway, I will be playing catch up on lots of stuff
over the next few days... so I appreciate everyone and your well wishes
and prayers... and I hope things "settle" a bit now, and I will feel
better over the next few days, get my strength somewhat back, and be
able to get back to "life" rather than a sofa and movies 24/7... Hugs to
all... Me
It SUCKS big time, when you feel your life is totally out of your own control, and you have no way to "fix" things... you just have to succumb to the sofa, resting, and putting a whatever you could call "life" on hold.
This past 6 weeks or so have been a total nightmare. Combine all of the issues with the lump on my thigh, cellulitis, high powered antibiotics, my own lower back, pain, stiffness, and a seemingly "worsening" of RA symptoms. My hands and wrists, along with fingers and thumbs are really bothering me worse than they ever had. My right hand has several swollen joints and even the cartilage between my fingers seems to be swollen, puffy and very stiff.
I have actually missed my Orencia now for the 3rd week (in fact I usually take it on Tuesdaus - but after all of the issues with cellulitis on the top of my left thigh in a place that seems where I usually do the Orencia Injections, first of all, with the infection I feared taking it, and 2nd of all, I am not through researching it, but I feel I may have gotten a "contaminated" needle giving myself the injections... I am a stickler for the skin being very clean, and make sure that the alcohol swabs get all in the area, and I always have clean hands, and usually put a bandaid over that spot at least for a day... and I realize with any type of autoimmune issue, I am more apt, more prone, to have these types of issues, but when you get so ill, that your entire life goes on hold for several weeks, it is surely difficult to deal with.
Anyway, I just completed two 7 day rounds of Rifampin and Bactrim - I hope and pray after 14 days total of these two powerful antibiotics, this cellulitis is gone, and what small "lump" that is left, will just take a bit of time for my body to "absorb" it. I've never had to deal with cellulitis before. So, what portion I do know about it, is what my doctors, my pharmacist and my own research has told me.
I don't want to have to take anymore antibiotics if I can avoid it. I already have infections at times like pneumonia twice in the past year or so that require them. Thus, I worry so much about getting "immune" or something mutating to where the antibiotics do not work. Actually that scares the hell out of me.
But, I must be sure that all signs of infection are gone. I can't take a chance for sure. Plus I feel if this does not do the trick, I will have to be hospitalized and put on IV antibiotics, which I don't have time for, and is surely NOT a convenient situation for me financial wise, time wise, and due to me being here, with the pups, and no longer having another person here to help out, I just can't be gone several days to the hospital. Of anything that sucks about being alone, to me is just that. I can deal with "alone", like many of us do. What I can't deal with is the times I need to be gone for more than a day... then that requires so much change. I must find someone to watch after the pups, and that is not an easy thing... fortunately there is a young woman, along with her sister and Mom that do come to your home and watch after them. But, mine are both so totally ruined, they have a hard time with a stranger, or with me being gone for any time over a day, or a day and a night... so it is like having kids... you can't just leave them at the house for a few days, run off to the hospital... you must have them watched over... My Pug, is really get very stiff herself... she is up in age and has a difficult time getting around... can't jump up on the sofa anymore by herself... and she requires a bit of extra attention, plus I give them both medications daily and so forth...
Even though some may not comprehend how an animal or animals can be so much of your life, but they are... anyone that is an animal lover, and has or had a dog(s), cats and do forth totally "get it"... they become a part of your family and for me right now, they are my family...
Even though I think I should have "more time" now, I feel as if somewhere my time is being "sucked" away... the days feel shorter, and the number of things that need to be done, longer... and I never seem to be able to find enough energy to complete the tasks that I should be able to... I've tried everything... lists, organizing, I multi-task, although not as well as I used to be able to... but it is like life goes into overdrive... and rather than slowing down, and things getting "less" all needs are more... whether it is my own health, my Mom's, the house, the pups, everything seems to suck time away... I spent over a week more or less on the sofa... so I have all of this stuff piled up... and all of it important in its own way... but it is impossible for me to handle it all anymore... the age, the autoimmune illnesses, along with everything they bring and take away... my body feels "worn" out rather than better....
It SUCKS big time, when you feel your life is totally out of your own control, and you have no way to "fix" things... you just have to succumb to the sofa, resting, and putting a whatever you could call "life" on hold.
This past 6 weeks or so have been a total nightmare. Combine all of the issues with the lump on my thigh, cellulitis, high powered antibiotics, my own lower back, pain, stiffness, and a seemingly "worsening" of RA symptoms. My hands and wrists, along with fingers and thumbs are really bothering me worse than they ever had. My right hand has several swollen joints and even the cartilage between my fingers seems to be swollen, puffy and very stiff.
I have actually missed my Orencia now for the 3rd week (in fact I usually take it on Tuesdaus - but after all of the issues with cellulitis on the top of my left thigh in a place that seems where I usually do the Orencia Injections, first of all, with the infection I feared taking it, and 2nd of all, I am not through researching it, but I feel I may have gotten a "contaminated" needle giving myself the injections... I am a stickler for the skin being very clean, and make sure that the alcohol swabs get all in the area, and I always have clean hands, and usually put a bandaid over that spot at least for a day... and I realize with any type of autoimmune issue, I am more apt, more prone, to have these types of issues, but when you get so ill, that your entire life goes on hold for several weeks, it is surely difficult to deal with.
Anyway, I just completed two 7 day rounds of Rifampin and Bactrim - I hope and pray after 14 days total of these two powerful antibiotics, this cellulitis is gone, and what small "lump" that is left, will just take a bit of time for my body to "absorb" it. I've never had to deal with cellulitis before. So, what portion I do know about it, is what my doctors, my pharmacist and my own research has told me.
I don't want to have to take anymore antibiotics if I can avoid it. I already have infections at times like pneumonia twice in the past year or so that require them. Thus, I worry so much about getting "immune" or something mutating to where the antibiotics do not work. Actually that scares the hell out of me.
But, I must be sure that all signs of infection are gone. I can't take a chance for sure. Plus I feel if this does not do the trick, I will have to be hospitalized and put on IV antibiotics, which I don't have time for, and is surely NOT a convenient situation for me financial wise, time wise, and due to me being here, with the pups, and no longer having another person here to help out, I just can't be gone several days to the hospital. Of anything that sucks about being alone, to me is just that. I can deal with "alone", like many of us do. What I can't deal with is the times I need to be gone for more than a day... then that requires so much change. I must find someone to watch after the pups, and that is not an easy thing... fortunately there is a young woman, along with her sister and Mom that do come to your home and watch after them. But, mine are both so totally ruined, they have a hard time with a stranger, or with me being gone for any time over a day, or a day and a night... so it is like having kids... you can't just leave them at the house for a few days, run off to the hospital... you must have them watched over... My Pug, is really get very stiff herself... she is up in age and has a difficult time getting around... can't jump up on the sofa anymore by herself... and she requires a bit of extra attention, plus I give them both medications daily and so forth...
Even though some may not comprehend how an animal or animals can be so much of your life, but they are... anyone that is an animal lover, and has or had a dog(s), cats and do forth totally "get it"... they become a part of your family and for me right now, they are my family...
Even though I think I should have "more time" now, I feel as if somewhere my time is being "sucked" away... the days feel shorter, and the number of things that need to be done, longer... and I never seem to be able to find enough energy to complete the tasks that I should be able to... I've tried everything... lists, organizing, I multi-task, although not as well as I used to be able to... but it is like life goes into overdrive... and rather than slowing down, and things getting "less" all needs are more... whether it is my own health, my Mom's, the house, the pups, everything seems to suck time away... I spent over a week more or less on the sofa... so I have all of this stuff piled up... and all of it important in its own way... but it is impossible for me to handle it all anymore... the age, the autoimmune illnesses, along with everything they bring and take away... my body feels "worn" out rather than better....
Friday, August 7, 2015
Orencia - CELLULITIS - and other known biologic medications, for RA, Lupus and other Autoimmune Diseases"....
OF course all of us know that "biologics" in total can cause infections, cancer, especially lymphoma, TB, and other some "serious" side effects. But, I NEVER have had "CELLULITIS" before in my life. I "thought" originally this cellulitis on my left thigh (top) was from possibly a sliver of tree bark that I thought happened about 8 weeks ago or so while I was cutting some branches up. But, the more I think about it, the more I "see" that both thighs at that particular place is where I usually take my Orencia Injections. It is so happens, about 3 day ago or so, I noticed a "small" (like possibly pea size) "lump" on my right thigh almost in the same spot. Of course it could be any number of things, but I am beginning to wonder if the injection type of Orencia that I had in that last "box" may have no been contaminated... because having "bacteria" on the skin OR on the needle in itself, can of course cause cellulitis... and the "medication" in itself, can also cause it also. I am almost "overly" cautious when it comes to my weekly injections. I use a couple of alcohol preps, wash my hands first with antibacterial hand soap, then make sure I clean the skin well around and out from where I put the medication. Yet, I am leaning towards the possibility of the "injection" needle in itself as I said above possibly being "contaminated"... anyway, the huge lump is definitely going down now. It is now about the size of a "little smokie" LOL... or I guess the very top portion of my thumb to the first knuckle size approximately. NOW though, after having the severe intestinal issues with the antibiotic I had here, while waiting on the doctor over last weekend to call me in the two for a 2nd round, which is Omnicef, that is the culprit of causing me to have SEVERE problems with not being able to "keep" anything in my digestive tract. I FINALLY thought I had the "gripes" I think as it can also be called, have basically stopped (I pray) BUT I woke up very nauseated this morning. I took some of my meds for it, and thought I would be okay in a bit... but a bit earlier I began to be sick to my stomach and was "throwing up" and all I had at the time in my stomach was some green tea iced... so if it is NOT "ONE" end, it's the other... Gosh I am so sick and tired of being so SICK< SICK< SICK!!!! Anyway, I am trying to get myself back on schedule with everything, but getting so nauseated this morning put another damper on my schedule returning to whatever "normal" is for me.... If YOU or ANYONE you may have heard talk about getting "CELLULITIS" from "Orencia" or another biologic, please post and let me know... I would like to see if there are others here that may have had the same type of issue...
Thursday, August 6, 2015
US Pain Foundation September Pain Awareness Month & our Local Mayor signs Proclamation & is allowing me to do the "Beautify in Blue" Campaign for Pain Awareness!
I am totally psyched over our city Mayor signing the Pain Awareness
Proclamation for September! Also, they are allowing me to set up the
ribbons, signs and so forth for the "Beautify in Blue" campaign by the
US Pain Foundation! I am so elated to be able to bring this "home" as
far as awareness about chronic pain, and just how much it effects so
many people's lives... and so forth. The city has just been very
receptive in helping me, so that makes it even better! Here is a pic of
the signed Proclamation!
Subscribe to:
Posts (Atom)
-
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...
-
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...
-
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...