September 2015 "National Pain Awareness Month" right around the corner and "Beautify in Blue Campaign" by the US Pain Foundation

I will go ahead and mention that I got our Mayor here in my Hometown to sign a "Proclamation" for September 2015 being National Pain Awareness Month! The US Pain Foundation is "hosting" a "Beautify in Blue" Campaign to bring awareness into our towns and cities. Ennis has allowed me to be a part of this event for September. I am not sure all of what my package will be from the Foundation, but I will have signs, posters, ribbons and so forth to put up around town. So, I am thrilled to be able to do something and give our town a look at just how chronic pain can "control" your life, and just how many right here in town suffer from all types of illnesses that also have chronic pain issues in tandem. Even one of the gentleman that does okay these types of projects told me he suffers from Migraines. It is amazing when you speak out about some of the chronic illnesses and pain here in your own "backyard" so to speak, how many others are also suffering too. I have two cousins, both suffering from RA, even before I was diagnosed. In fact my 1st cousin Mike, who just lost his Mom to stomach cancer (my Mom's sister and my Aunt of course) just had hip replacement, this is his 2nd replacement - (two weeks ago), he had his other hip done, about the time I was having one of my knee replacements done probably in 2008 or so. I have had "so many" and in 2007. I believe I went through about 7 surgeries or more on joints, so the dates sometimes become a blur. But, I know others that I run into in the market of Wally World and so on, that also have issues, some of them like my neighbors across the street, the Mom, and both sisters all have diabetes. I believe their Dad also suffered from it. In fact the youngest sister, and she was maybe in her 40's passed away about a year ago after fighting diabetes. She had already been on dialysis. The Mom has also been on dialysis now for several years. She "shattered" a knee not too long ago and spent weeks in the hospital and in rehab, but due to her illness, and the dialysis and age, they would not do surgery on the knee. I don't think the doctors feel she could make it through the surgery. She is sometimes so weak, they have a difficult time just getting her to dialysis. It is just sad to see what the entire family is enduring. The son, is just an incredible man. I don't think he has been "plagued" with diabetes yet. But, he also has two strikes against him on both sides of the family. You don't see it as much in men, especially the type they have, but with the family history, he certainly could succumb to it.

After all of the advocacy I do for Autoimmune Illnesses, Lupus, RA, Sjogren's, and also Arthritis the AI kind, as well as osteoarthritis, along with Cancer and Heart Disease, sometimes the issues of Chronic Pain kind of take a "back seat" in my activist roles. 

So, since Chronic Pain, which of course I know all too well, from my own personal and up close experience with it now for many years, well before the Autoimmune Issues were diagnosed, I suffered from such horrific Migraines that I was sick with them sometimes several times a month, for many years throughout the time I was about 17 years old, until about the age of 45 or so. 

They became so bad at times, that I had to resign jobs, that I had been in for years at a time. It became such a burden, yet back then there were not many answers as far as migraines went. They had very few medications, most of them of course narcotic pain medication, and even back then, the doctors were so leery about giving them. But, if I did not have my prescriptions, it never failed I wound up in the Emergency Room so many times, and even that for one got OLD very quickly, and for TWO, of course the ER doctors began to think of course I was after the "drugs" rather than having Migraines so bad. 

So, oddly enough, once the diagnosis of the autoimmune illnesses were made, and I finally found after years and years of suffering by then all types of chronic pain issues, an awesome Pain Management doctor, who has been taking care of me now for at least 8 years maybe more... and he even put in my internal pain pump in 2010. 

My migraines seemed to have calmed down, even before the pain pump. and began to change. I began to have "Lupus Migraines"... and an injection of corticosteroids, along with a step down pack for 7 to 14 days, was the only thing that helped those.


But, my chronic pain became more complicated due to all of the severe joint issues, of which some I have had surgery and others still bother me with chronic pain, which is a part of many AI illnesses.

So, I felt compelled to now do some advocacy work in the realms of Chronic Pain.

Thus my reason for helping out with National Pain Awareness Month, and the Beautify in Blue Campaign. I hope to be able to help educate others about Chronic Pain, and just how badly it can also effect your quality of life. 

Daily Life with Autoimmune Illnesses, RA,Lupus,Sjogren's, family, friends, doctors and all in between

It seems I've been almost "stuck" on this subject of living daily visits and such they come along with them.

I have found that at times I get so "technical" on my blog, I forget to just discuss daily life... my family, Mom, my grown kids, my Grand kids, and all of the medications, symptoms, side effects, and ongoing things that many of us face in our daily walk of life.

But, when you have any type of "chronic illness and/or pain" "nothing" is typical. Waking up in the morning and feeling "okay" aat times in itself a challenge. Then you face LOADS of medications that sometimes become an "evil necessary in order for you to have any type of quality of daily living.

Even though with all of the meds, keeping up with doctors visits,trying to take as good of care of yourself as possible... there are still errands, families, bills to pay, food to buy, and "we" as patients all too often find ourselves "overloaded" with some of the daily tasks that before we were chronically ill, would have been a breeze.

I have a "GREAT DEAL" I shall catch you up with tomorrow, Sunday morning. I HOPE that I feel well enough FINALLY that I can go back to church in the morning. Even something such as going to church can have to be 'put on hold" if you are ill, or are in too much pain... nothing is "ever" good to go, for the most part... almost every aspect of life is a challenge or gets challenged by the horrid evil illnesses.....

Here is a bit, from a post of mine on FB.. and I will continue tomorrow.... 

Lots going on and I honestly kind of just "crashed".... After everything from my own bout with whatever the hell this lump is on my upper left thigh, to not feeling well as far as my stomach, and so on... Mom and her lumbar spine issues, and we still have to go for the injections... I postponed them until next week. With her younger sister passing away with cancer, the funeral and all that we have had to do, and then neither of us feeling our best, I felt we needed a few days of down time. I've got to find a surgeon to remove this lump. It did not go away with the antibiotics, and after 3 rounds, my PCP wants it to come and so we can find out exactly what it is... infection, a cyst, or whatever it is... I also developed a couple of "sore spots" around my waistline. One right at my belly button, and another towards the left of my side at my waistline just a bit towards my back. So much has happened and I've been doing so many things around the house in between, it could be I just hit myself or strained myself and did not even realize it. I found one a couple of days ago, and then the other yesterday. We are still all reeling from my Aunt passing away... I am the kind of person who can be "strong" to get everyone else through things, and then after it is kind of settled, then I fall apart... and that is kind of what has happened to me over the past couple of days... I really did not want to do anything, see anyone, write, talk to anyone... all I've wanted to do it sit, be quiet and still, with my two pups, and watch movies... I just have needed this "down time" to gather my thoughts, and try to get a list of the "what needs ASAP" to be done in the next couple of months... Mom's lumbar stuff, my lump removed and that chest Xray - honestly, I feared taking my Orencia when this cellulitis showed up. Well, I was already having a new swelling and much more pain and stiffness in my hands and fingers... and it is much worse now. I am supposed to get on the Xeljanz, but I need the chest X-ray first, and there has just not been a "good time" for me to run and get it honestly. Besides if this is cellulitis, I don't want to "compromise" my immune system anymore, and we now have a "POSITIVE West Nile Virus in mosquito's here" actually found only about three blocks away from my home!!! So, that is another frightening situation. Anyway, I also have to get well so I can have my back surgery, which really needs to be done before the first of the year... and we will "tentatively" be having a "settlement" on the accident from 2014 hopefully in about 7 to 8 weeks, if things go okay... and then there are "other things" once that is over that must be done also... not giving details but some of you already know the score on that... so LOTS on my mind, heart, emotions, and physical realms also... I will"bounce" back... but I have to jump a few hurdles and hope not to trip and fall over them wink emoticon Hugs, Rhia

Becoming an "Active & Proactive Patient" Educating yourself & How it can surely help when you are managing chronic illnesses and/or pain... Lupus,Heart Disease,Cancer,FM,RA,Sjogrens and so many more...

In Other Words "When Patients Manage Doctors".... or at least try to...


This is something I have practiced actively all of my adult life, and especially after have several different "ongoing chronic illnesses", and now we see a different "specialist" it seems for each and every illness, unlike when you "family doctor" did it all, done your physicals,delivered babies, done surgeries etc. I recall with my 1st son being born, my regular Family MD delivered him. Shortly thereafter, he quit delivering babies, along with many of the other family doctors. Due to the rising cost for them to have insurance being doctors, they allowed those area's to be left up to the specialists. When you have for instance my situation, heart issues, so I need a cardiologist, Lupus, RA & several autoimmune illnesses, my Rheumatologist, and my PCP also works with me on the Lupus, I now have a specialist as far as my vision, due to the double vision, I have different surgeons, from a general surgeon, to more than one orthopedic surgeon, because many of them "specialize" in different joints, surgeries and so forth

Then many of us have a Neurologist, a Pain Management specialist, and ENT, a dermatologist, dentist, sometimes even a specialized dentist, and from time to time we may encounter other specialists, such as immunologists, psychologists, oral surgeons, and so many others, as time goes on. I found if I did not take an "active" approach to let each doctor know who the others are, what role they play in my health care, what meds I am on and from which physician, and I keep a list of all of my physicians and why I see them, along with lab work, any type of radiology reports, or scans etc... I have learned that all too often one doctor, may not even send the others the information such as labs, testing, imaging and so forth. So, being involved in your own health issues, taking charge of making sure everyone is put to speed on your other health issues... all of that is so critical for all of us, especially those who deal with chronic illnesses. Now the one problem with that, is SOME physicians, are not as "accepting" when a patient comes in with information, and so forth.

I have found that a couple of my physicians, even though in the end, what I had originally thought and told them was true about a particular health problem of mine, they much prefer an "uneducated patient"... I know that is hard to believe, most of mine are thrilled that I take an active role, and I "know" my own body, and I research medications, treatments and so forth. But, I have a couple of them, especially one in particular that gets almost "mad" when i come in and tell him what I think could be wrong. He has told me before that "I was not the doctor" etc... then he had to apologize a couple of times, because what I had said in the beginning was exactly right! So, he had had to "swallow his pride" and in his own way, make amends for calling me "stupid" basically. Yet my other doctors love it when I can walk in and possibly tell them what I fell maybe going on. It allow them less time in testing etc for things that may NOT be wrong, and to concentrate on what is so we can get right on to "fix" the problem.... Times have dramatically changed in the medical world even over the past 10 years or so... and you truly need to be an "educated patient" whether your physician likes it or not... YOUR health and well-being should be #1 for you!

 

Here is an article from the Wall Street Journal

 

"When Patients Manage Doctors"

http://www.wsj.com/articles/when-patients-manage-doctors-1439228028

Sjogren's and Just How We Lack Professionals in the Medical Field that truly Understand all of what Sjogren's can do....

Such an important thing - there is certainly NOT enough education, even with the medical professionals when it comes to Sjogren's. I in fact even after trying everything in my power to fight the autoimmune illness, lost ALL of my teeth to Sjogren's. It was a very hard ordeal to go through and even today, it remains something I feel "odd" about,although my dentures are very pretty. But, each and every one of my teeth were "eaten" from the inside out, and no signs of Sjogrens appeared to be causing issues, until suddenly I had 3 or 4 teeth completely break off at the gum line. I went in to see my dentist, who actually sent me to another dentist due to my own having also issues with horrible arthritis that is not allowing him to do nearly as much dental work. He had been a dentist here locally for gosh 30 plus I am sure... anyway, I was given a "full round" scan... and inside just about every tooth, you could see that basically all I had was a "shell" left... thus after over a year of pulling them all, and allowing all of that to heal, along with a couple of dry sockets, then one of the tiny cartilage bones between my maxillary sinus passage was  pulled and thus a tiny hole that they call a "communication" happened. This I had to have that "repaired" two times, then allow it to completely heal over before I had the final teeth removed, and the dentures put in place. After that, I had to wait another almost 3 months for the bone and all to heal. Then I had the "mini implants" put on the bottom dentures to hold them in place... besides all of the time... the COST is ASTRONOMICAL!!! And even though it was caused by a "medical illness" I could never get a dime out of my insurance for any of it... just insanity... and at the very LEAST that type of thing is in the ballpark range of $12,000.00 and usually much more depending on which dentist and what your complications and so forth could be...

Here is an article that gives some answers to questions about Sjogren's...

http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp?WT.mc_id=social_niamstwitter

Corticosteroids and Severe Asthma.. Clinical Trial by Cure click

http://curec.lk/1MAcSXQ

New Study for People with Severe Asthma and on Oral Corticosteroids

One of the few treatment options for severe asthma patients who are uncontrolled despite standard treatment is the addition of oral corticosteroids. However, regular intake of these oral corticosteroids can decrease the quality of life for such patients. The purpose of this research study is to see whether the investigational drug can reduce the use of oral corticosteroids in patients with severe asthma.
More about the study:

• The study drug is Benralizumab
• There will be 210 participants in this trial

If you are interested, please find the full study details and eligibility criteria listed here.
Eligibility Criteria:
Participants must:

• be between 18 – 75 years old
• have asthma diagnosed by a doctor at least a year ago
• have been treated with inhaled corticosteroids + LABA for minimum 12 months since today + oral corticosteroids for at least 6 months since today
• have had at least 1 exacerbation (worsening of your asthma that requires medical intervention, emergency room visit, an inpatient hospitalization or a change in medications) in the past year

Participants must not:

• have severe lung disease other than asthma
• have HIV, Hepatitis B or C

Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Learn why I’m talking about Clinical Trials

Ongoing Lupus, RA, trying to cope with Loss of my Aunt, and all that is so complex when you are fighting a chronic illness/pain issue, dealing with stress, surgeries, and grief

Life can be so awesome one moment, and tragic the next. My Aunt Geri, Moms last living sibling, her younger sister passed away yesterday afternoon after battling a rare form of stomach/intestinal cancer now for a long while. I believe it has been at least 3 years, if I am remembering correctly. She went through lots of chemo therapy, but we knew for one it was not operable, and two the doctors had already said that it was terminal. Yet, for the Grace of God, she lived to see her first Great Grand daughter born, and then some. She lives up in Mesquite, so we don't have any details at the moment. Even though her family, along with my Mom and I knew it was coming, you are never really prepared for something like this. Especially with Mom and her lower back issues, and all we have been through and are still dealing with, plus my own issues with my back, needing surgery, then things getting complicated with me contracting cellulitis, no 3 weeks of antibiotics later and the lump remains on my thigh under the skin. When I saw the doctor Friday, he said if this last round of antibiotics does not show signs of going away this, then I will need to see a surgeon, have the lump removed, and then they can determine exactly what it is. It has now gone from being about the size of a silver dollar, kind of a bit hard, but never feverish, red, and nothing ever burst through the skin, like you would assume cellulitis would. That is kind of the reason why he and myself are baffled as to why it remains. It has now turned into being about the size of a quarter but very hard, sore to the touch, plus I developed another lump on my right leg, that is almost in that same spot, just on top of my right thigh, and almost exactly across from the other one. It is not nearly as large, about the size of a pencil eraser, but sore to the touch, and like the other one pretty hard, and does not move around under the skin. At the very first, before I even knew what it was, it was a bit softer, and it kind of moved around underneath the skin when I would try to check out how large it was. Then of course, I had ran out of Orencia - now I guess it has been about 4 to 5 weeks ago. I had issues getting the insurance to get off their butts.. I needed a new script from the doctor, which they received, so I thought they were going to fill it and send the meds to me as usual. Well, after going another week, no call and no medication, I called them. I found out yes, they had the new script, and even though i had already asked for it to be refilled before they got the new one, they did not fill it. Instead they were waiting on me to call back and ask for it to be shipped. In the meantime the lump formed, all of the other stuff came up with both Mom and myself, so I have not had any Orencia in weeks. I feared my last couple of injections may have been contaminated somehow and caused the cellulitis. I am supposed to be on Xeljanz anyway, did the blood work and labs, then the TB lab test came back indecisive, thus I still have not been able to have the chest X ray ... I was hoping to do that last week, then I came down with the stomach bug, and I am still not completely over something with my stomach. I am still somewhat nauseated, which I contribute to the heat, already being sick, a headache, all of the stress about my Mom, my own things such as the back surgery, and so forth. So, now my fingers on both hands, and in between my fingers are swollen, my knuckles really don't want to work correctly and I am having hell with the RA in both hands and wrists. I have always had some issues with them, but more in both thumbs. I have not been able to get the swelling down, and just trying to open a bottle of coke or anything is so painful, plus my grip is really bad right now... and then my darned keyboard that I love... it is solar, seems to be going out on me, thus this one sucks and does not even allow me to do a hyphen or quotation mark, and It is really irking me to no end...PLEASE continue to keep my Mom, and the family in your thoughts and prayers... as I had posted before, this is Moms last sibling, she has lost both parents, a brother, a sister in law... and most of the family on both my Grandfather and Grandmothers side.. of course we lost Dad in 2005... and am sure that brings up things such as that for Mom anyway... I appreciate each of you... I am thinking about trying to get ready for church. I missed this past two weeks because of being so sick and was going to try and go this morning... but I am still dealing with a bit of stomach issues, and with all going on, I HAVE to go and have my pain pump refilled tomorrow, I have no choice. We waited this time until THE DAY my PTM shows the refill date to be. For some reason it almost falls every time where I have to have it filled too early, for one reason or the other... so it worked out to be on the day this time.... more later...

I appreciate your prayers, and yes mine are with you also... this is just proving to be "another one of those tough years".... I had so hoped that 2015, would bring more Light, Hope and Positive things to our lives. Yet, once again so many of us are trying to cope with all types of chronic illnesses, pain, mental and emotional pain also, the loss of loved ones, and this entire nation in general... I can barely stand to watch or look at the news anymore. It is almost too depressing to see just how horrid people can be. From harming their own family, friends, to those who just do NOT care about humanity... the greed, corruption, the back biting, back stabbing... those that get rich off of our own misfortunes, from lack of care from insurance companies, to the extremely ridiculous prices of medications, even generics now are soaring out of the roof... and people have to almost feel as of they always have to look over their shoulder, whether in a huge city, or a small town... so many as I said above that have no remorse, or regard for human life. Even all of the "election" stuff... it just almost makes me physically sick to my stomach at the thought of just about anyone running for President of our nation next year and anyone of those possibly winning... we are already in a terrible condition, not just nationally, but internationally... countries going bankrupt... people not able to find jobs to support their families... and the amount of ever growing medical issues... our water, air, soil... all polluted with Lord knows what... or whether you will walk out of your local market, or church, or movie theater and be taken down by some "home grown terrorist"... I despise even the sound of that... hard for me to fathom any human especially in this great nation being "home grown to terrorize, and kill others... the insanity grows daily.... we have the weight of our own issues on our shoulders, along with the weight of this entire nation and world, as far as the safety, security, and welfare of all of us.. again thank you all for your continued thoughts and prayers... my Mom and I, along with my kids and family appreciate each of you..

Coping with Loss - Life changed by Autoimmune Illnesses, & all kind of other health ailments, complications, & the thought of a chronic illness taking your very life away...

Over the past several years the subject of having autoimmune illnesses, along with my other health issues.... many of them due to the AIs... a voice sometimes brings up the loss we suffer when the very life we have made is jerked out from under you.

You begin to research, to see specialists, to try medications that can have as bad of side effects as the disease themselves do... you know that once you find out that your total immune system has been hijacked by these horrid diseases, your chances of survival becomes less.

We ALL have times we think about dying... passing away to move from this world into another, whatever you think that may be for you...

Whether you have a brush with death from a bad accident, from another disease, such as cancer, diabetes, or possibly some other issue from Mother Natures storms, to those who choose to walk into a public place and open fire on unsuspecting individuals, or crash planes into buildings, that would just as soon blow themselves up in the name of their religion... there are many ways that some of us may face whether our time is up on Earth, and feel that near death experience is often a wake up call, for us to do something different in our lives.

I have encountered more of these, than I care to admit actually. A 4-wheeler accident at 25 years old, nearly within inches as I centered the front of a car, and I went completely over the top of that car, after my mouth hitting the hood ornament, and for fortunately the momentum threw me completely on the black top behind it and not through the windshield... or I would have never made it...

Then at age 40, I suffered a heart attack, that at first the doctors thought caused severe damage to my heart muscle, and it was not until I was transported to Dallas and had an angiogram, was I told I was extremely lucky, that there was very little damage to my heart... and


in 2010 after a night of being suddenly so extremely ill that I literally could not walk, and throwing up green bile... having a gallbladder removed, which something went terribly wrong and I had to spend 6 weeks in a hospital in Dallas, and at the time again, they were not sure exactly what was wrong.. I was in and out of surgeries several times, and supposedly one issue with a cut in one of my bile ducts. It was allowing toxins to pour into my abdominal cavity, thus again I was just meant to still be here, because I finally did get well, yet before I left that hospital I suffered a 2nd heart attack. Due to all of the stress emotionally and the toll my body had been through, the felt it was more from an artery in spasms, and I have so far not had to have any type of stent etc... all so far is being treated with medications, for which I am grateful.


Till this day, even my own Primary Care Doctor tells me, that I certainly was meant to be here, because he feared for my life when all of that went down. Now, with the Lupus, RA, Sjogrens and so forth, along with medications such as Predisone, Biologics, and my other health factors, if I allowed myself to, I could bury myself under neath my bed, and not face life daily.

So, a couple of days ago, I was listening to the radio while running errands and Tim McGraw and his song, Live like You were Dying ... came on... I have always loved that song and it hit me after the ordeal recently with the cellulitis, so many antibiotics, the stomach and intestinal whoa s I have been through, along with the concern over my own need for lower lumbar/sacral surgery... and of course knowing these AI illnesses, along with my other health issues leaves me many times over of becoming ill with something that could take my life in an instant... my Rheumatologist has reminded me more than once my chances just due to the RA of having a heart attack are like 50% more than a person without RA.

I have a dear friend, and she is suffering after being cancer free for over 30 years (she had cancer while we were still in high school and beat it), it has case back and has truly shook her to the core...  things for her truly have been a great deal like my own, with those people you had come to county on, suddenly just walk out on you... when you need them the very most.... and even with someone there you still feel frightened by the what if this, that or the other...

I also find myself, as well as many others, not wanting to talk about the subject - of course it is human nature to hide those feelings and try to surpress those horrible thoughts, yet they have a way of creeping in and I have found my own best way is when it comes up in thought to myself, I must work it all out and not try and ignore the facts... facing all of the possibilities for me has been a long road, but it has truly helped me to learn to deal with those nights I wake up drenched in sweat, crying out, and jumping up for night terrors.. plus for myself the more I try to keep it under wraps the more I find myself overly stressed and making myself almost ore physically ill.


So, what is the point of this post? For one, due to the complications of myself at the moment, and all that those medical issues cause, along with the concern over my Mom her back problems, and getting her the doctors and proper treatments to relieve the pain is has... I do better putting either pen to paper, or fingers to keyboard I guess you could say and writing about it... it helps to purge those feelings, of course they certainly will pop up again in the future...

Plus I DO WANT others to realize being frightened of dying, or feeling like your life could be taken away - way to QUICKLY when you still have so much more life to live is difficult to deal with.... so by my own posting of this, I hope to help others to get in touch with the reality of one of these and/or other chronic illnesses taking you away for good from your loved ones... and working through those feelings...


Here are the lyrics to Tim McGraws song....

"Live Like You Were Dyin'"

He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.
Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.
And he says,

[Chorus]

I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

He said I was finally the husband,
That most the time I wasn't.
And I became a friend a friend would like to have.
And all the sudden goin' fishing,
Wasn't such an imposition.
And I went three times that year I lost my dad.
Well I finally read the good book,
And I took a good long hard look at what I'd do
If I could do it all again.
And then.

[Chorus]

Like tomorrow was a gift and you've got eternity
To think about what you do with it,
What could you do with it, what can
I do with with it, what would I do with it.

[Chorus]
Sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I watched an eagle as it was flyin'.
And he said someday I hope you get the chance,
To live like you were dyin'.

To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.

I am not quote sure exactly what point, if any that I am making as far as my readers. At the moment, a part of this posting is for myself... facing my own mortality issues, facing that my last living Aunt, could pass away at any moment, yet that is with all of us... we could be in a horrible accident, or be struck down by an emergent health problem, a stroke a heart attack, an embolism...

We could walk into a shopping mall, or a movie theater, or into your local Wally World, and someone decide to bomb it, or open fire on us, the innocent ones, even at church, it seems no one is safe anywhere, anymore... Our world is and had been tested, our nation tested and tested again... from strange and new diseases, from MSRA and bacteria that are resistant to all medications we have now... we could be gassed by something dropped into our air, or in our water... we could have a plane fall out of the sky, or a local lethal business, such as a chemical warehouse, or other flammable place catch fire and explode to rock a small town or a huge city... each day we face the fact that something could happen and so many horrible, unspeakable acts have happened over the last several years... and they will continue to happen... those who should NEVER ever own a gun, having them in their hands and putting us at their mercy...

kSo, my point for myself.. is to do the very best I can to live my life, like the next week, the next day, the next hour... the next moments could be my last... to feel prepared for the unknown... for the time, I am called upon... for the moment, I have completed my visit here, and move onto a place perfect, without hatred, without stress, without want or need, without greed, without hunger, where everyone is totally happy, and everyone loves everyone else... so for you.... and me.... think of things you might do to Live this Life as we know it, Like we were dying....

National Pain Awareness Month in September and more from the US Pain Foundation Summit and Paul Gileno - Chronic Pain Takes so Much from Patients, Caretakers, Family & Friends Lives

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...

Updates from the Arthritis Foundation - RA, Supplements, JRA and more...

http://blog.arthritis.org/living-with-arthritis/cope-with-arthritis/

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/

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.