#TheRealRD Rheumatoid Arthritis Rare Remission - Daily Pain and Suffering

#TheRealRD #7 - Remission is Rare and Daily Suffering Is NOT!


As I read over the 7 ideas that the #TheRealRD asked for bloggers to blog about for RA Awareness Day, which is on February 2nd, and also happens to be Groundhog Day, and was my Dads Birthday, yet he passed away 10 years ago.

Ive come to know and understand the true chances of myself, and thousands of others out there like me, who suffer from this Autoimmune Illness, have MUCH pain, sometimes daily, and we KNOW all too often no amount of medications our Rheumatologists give us, the pain, the stiffness, the swelling, the lack of use of that particular part of your body like your hands and wrists become a severe problem. Take someone like myself that is a published author, and avid blogger, trying to set at the computer daily, for often hours at a time, if you intend on keeping a blog up to date, and writing a 3rd book, I must be at the computer.

Yet, daily pain keeps me from making my goals, that I had set even two years ago. So, when I saw this opportunity to write a blog post in honor of February 2nd, RA Awareness Day, by the Rheumatoid Patient Foundation (RFP), I am thrilled for the opportunity.

Honestly, and I am sure many of us could write about all seven of the topics. I have been through so many different medications and combinations, that either did not work, or caused severe other health problems, mainly all types of infections. I feel we do NOT have nearly enough research funds to get to the root of this hideous life altering disease. I also know so MANY others may not know that RA can effect all different types of organs in the body, from the heart, causing the heart attack number to DOUBLE for those with RA. It effects the joints, and usually many joints. Feet, toes, fingers, wrists, thumbs, the spine, the liver, lungs... It is a systemic disease, of which can harm any and/or various other vital organs of the body.

The daily pain is what many do not often understand though. Those who do not know the treatments, may not realize just because we are on medications, that does not mean, that all that often the pain subsides. I spoke with a member of my Rheumatologist staff two weeks ago, and when I explained to her the amount of pain I live with was high on the 1 to 10 score, she looked at me and said that is NOT Acceptable! No one should live most of their daily lives in that much pain!

After speaking with her it dawned on me that I DO accept an unacceptable amount of pain most days of my life. I have gotten to the place I think this is just how it is, I WILL have to just LEARN to ACCEPT that on a scale from 1 to 10, pain at an average of 4 will have to do, which is so WRONG! A level daily of 4 for most people not used to chronic pain would be excruciating! And it is not right for me to have to deal with ongoing pain of that magnitude day in and day out, yet what do I, or WE do about it?

I have a great Pain Management Doctor, who has implanted my pain pump, and will up the dosage as I need it, plus he gives me oral medication for breakthrough pain. Yet, I feel that is part of the problem. I have TOO MUCH breakthrough pain, on almost a daily basis.

MANY of US as Chronic Pain Patients, whether from RA, Lupus, other bone and joint problems, spine and back issues, severe nerve pain in different regions of the body, for many reasons, from diabetic nerve pain, to nerve pain and other types of chronic pain, that even our doctors do not know WHY it is there or sometimes even HOW to treat it properly - we are told that WE MUST LEARN TO COPE with a CERTAIN AMOUNT OF PAIN! It is not that I do not agree with that, I do. NO MEDICATION will take away ALL of the pain. YET, with the proper treatments, diagnosis, sometimes surgeries, some combination of medications, certain types of exercise, some diet changes, and some natural types of therapy pain can be diminished much better. IT IS FINDING that right combination of all of those or part of those things that can give us that type of relief, BUT it make take weeks, months, even years to get that all adjusted and working. There is NO ONE treatment, or magic pill, to just take and chronic pain subside for good.

All too often I feel that RA is a very misunderstood disease. Even though we have LOADS of information about medications, ads on the television, and in magazines, I feel that as a society those that are not patients, caretakers, or close to someone with this horrid disease do not fully understand what it can do. It as not as simple as taking an NSAID over the counter, or even taking one medication that is a prescription. At times, some of us DO fine the correct medication, or combination of medications and find relief. Yet, those that do, are far and few between.

I have been through an entire gamut of all types of medications for RA and Lupus. In fact, I just saw my NP from my Rheumatologists office 2 weeks ago. As we spoke about my pain, the daily swelling, stiffness, I am losing more of my grip in both hands, the weakness, losing the ability to do everyday things, buttoning a shirt, or even zipping a zipper... I have watched my body especially my hands, wrists, fingers, thumbs are very bad, feet, ankles and now my spine begin to degenerate even more than ever before due to RA.  She made a remark that upset me when she said, that I had tried all kinds of medications and none of them seem to work. What upset me about it so much, it was like she was blaming ME for medications not working! Some of them caused too high of infections in me. I had double pneumonia at least twice, then had cellulitis in both thighs, that then turned into double abscesses, that took 4 or 5  MONTHS to get well. I had to make a weekly trip 35 miles ONE WAY for weeks and weeks to a Wound Care Specialist in order to HEAL those abscesses! It delayed me in having a cervical neck surgery I needed badly, as well as my internal pain pump had a permanent motor stall, and I needed surgery to replace it! But not one surgeon would touch me until those abscesses were basically well, and I was free of infection.

So I spent months without most of my RA medications, plus a couple of months without my pain pump working, and suffered endless weeks of having to have wounds the size of a silver dollar and as deep as half my thumb getting debrided until they finally got well. Our pain is NOT just as simple as from a joint. It is not as simple as taking one pill. There are so many medications, yet like myself, daily, I am in pain. Especially for the 1st few hours of the morning. As joints start to be effected MORE by this disease, then the pain can become almost unbearable, and at times, even in my lumbar spine, I have enough degeneration from this hideous illness, that it hurts so badly, I cannot even sit to type, to write, or often not be able to have the quality of life I so want to have.

Honestly, I cannot recall unless maybe a very rare occurrence that I have read or heard one person tell me, I am in remission, and I have finally no pain from Rheumatoid Arthritis. I do not believe the cases are out there, and if they are, very, very rarely do they happen.

When I saw the article about raising awareness on February 2nd by the Rheumatoid Patient Foundation, and that I could participate, and tell my feelings on 1 of 7 subjects, I wanted to tell my feelings, and story, because awareness is something we so desperately need so much more of.

#TheRealRD

You too can learn so much more at ...

www.rheum4us.org








Blog Post for Feb 2nd For Rheumatoid Arthritis Day!

The Rheumatoid Patient Foundation

has given us bloggers, or those who would like to post 7 topics to pick from to post about for National Rheumatoid Arthritis Day! I had picked the 7th one and am working on my blog post now. But I wanted share to these with you and the article in case you would like post post or blog about it!

 This began in 2013, and done so well, they decided to make it an annual event! I am proud and honored to put a blog post in. Of course for me many of these subjects ring like a bell in the night over things I, myself have been through and I am sure so they do for you. Be sure to include the hashtag ---


#TheRealRD in your posts!






Those are many great topics to blog about ad gives e an idea about where some of my blogging may go this year when it comes to RA!

 

To find out more details about how you can either submit a blog post or even send your thoughts in, see their website at---

http://rheum4us.org/rheumatoid-awareness-day-2016-the-real-rheumatoid-disease/

Hallucination, Premontion, Trying to Help My Mom Understand an ODD Happening... sometimes we just do not totally understand odd things....

Okay, I have a very odd situation going on with my Mom. I called her yesterday evening about 7PM or so, and she was crying. It scared me to death, thinking something was really very wrong, and then I was upset she had not called me. So, she starts out telling me that my (sister in law) Madeline, who has not spoken to any of us since my Dads funeral in 2005. My step brother Larry, and her were at the funeral home I guess they day they were picking out the casket, and so forth. I had not made it in yet from Seattle, so I was not there to know what happened exactly. 

But, from what Mom said, Madeline (who honestly always acted like we were trash, and not good enough since we did not live in a huge fine fancy home and so forth) is was born and raised in England, and had a little girl Karen who was just about 3 years younger than me. 

Anyway, I could make that a long story, but anyway, something came up at the funeral that Larry asked my Mom about some (insurance policy) that I guess my Dad had many, many years back, and he had probably used it for his burial, so it was no longer there. But Madeline must have stuck her nose in the middle of it, and began asking I guess about that policy, the money on it, and felt it (belonged) I guess to Larry and her! Well, Mom was already in a state of shock, as to how my Dad died so suddenly from a knee replacement that went very wrong... and to this day we are not really sure exactly what happened to cause him to die... but after whatever words transpired, Larry and her would NOT speak to ANY OF US! 

Not Mom, not my two kids who were there, and NOT ME! And I had nothing to do with this, and did not even know it had happened.. so I was totally in the dark as to why they ignored me at Dads funeral, and then at the meal afterwards... and finally I was told that there had been words at the funeral home, before I even arrived.... well, I only know what I have been told... BUT they have not TALKED TO ANY OF US, NOT CALLED, NOT CAME BY TO CHECK ON MOM... AND she helped to raise Larry, as a teenager, and then he stayed at the house even after I was born, and he was there until I was about 4, then he enlisted into the Air Force... he was stationed in England a couple of different times, thus that is where he met his wife Madeline, and finally adopted Karen the daughter... Okay so there is the background a bit... so night before last, Mom said she was in bed, but just got in the bed and was fully awake, and she heard footsteps coming down the hall. Madeline always wore high heels, no matter what, and always was dressed to the (Nines) when they visited, which she rarely would come... anyway, Mom said she sat up, and Madeline was standing at the bedroom doorway, dressed in black, and she is already tall, and in heels she was very tall... and that she began to ask my Mom (Henri (Moms full name is Henrietta, can I come and stay with you?) 

Mom said her voice sounded extremely distraught, and that Mom even tried to speak to her... now at the time I thought Madeline REALLY came there, from how Mom put this to me... so I even asked, how did she get in the house, did you leave a door unlocked, because with screens and doors locked, no way anyone could get in... and then Mom began to tell me, she never said anything, else, and after about 10 minutes, suddenly vanished.... om put this to me... so I even asked, how did she get in the house, did you leave a door unlocked, because with screens and doors locked, no way anyone could get in... and then Mom began to tell me, she never said anything, else, and after about 10 minutes, suddenly vanished.... Now my Mom, along with myself, and both of my kids, have always had this (6th sense) or whatever you want to call it, about knowing when something is wrong, or having a feeling, or I have vivid dreams... in fact I have very bad night terrors, they are better now, but had been very very upsetting... anyway, Mom did not really recall the whole thing until yesterday evening, and then she began thinking about what had happened and was extremely upset that something (bad) had happened, or was going to... 

I finally figured out this was some type of hallucination, or some kind of dream state, but Mom insisted she was wide awake... but it truly upset her, yet she did not call me... and she said i am not even sure why I did not call you... I was so worried.... Anyway, I tried not to make more of this with Mom, not wanting to make her more upset over it, especially late in the evening... so I have been trying to do some research today, to find out about hallucinations, something this vivid, because of course I had been concerned Mom has signs of Dementia or Alzheimers, in which I know for a fact in some cases they have delusions, or Hallucinations, and so forth... but I also have tried to find my step brothers phone number, email or something, so maybe I need to call them... what I did tell Mom is often whatever it appeared to be about, may not be something bad... as I told her, since it was at Dads Funeral 10 years ago, almost 11, that maybe why she was dressed in black, and possibly they are talking about trying to reconcile the situation, knowing they acted stupid, and should have never (cut) any of us out of their lives... so maybe it was a message of almost apology... or that it could mean anything or nothing... it just happened and that is that... 

BUT, I know Mom is still concerned, so I am not sure just how to handle this... she was much better after talking to me about it last night... so I know just telling it helped her to better understand, that it can happen and not mean a thing... yet these things can means physical issues... when I ran such a high fever last time with double pneumonia, I was Hallucinating in the broad daylight, walking around my home talking and hearing voices, that were not here, thus I finally thought to take my temperature, and it was 103... thus was causing me to have hallucinations... she has not been well, she is in pain still some with her back, she is already upset over lots of things, her nutritional level is not good and she is lacking in several vitamins, after all of the weight loss.... so even just the stress of all of that could have something to do with it.... anyway, any of you have any ideas, or suggestions? I would appreciate another point of view... LOL, I will say it kind of (freaked) me out and then I felt odd last night before I finally went to sleep....

Losing So Many Lately To This Hideous Disease of Lupus!

Since the 1st of January, we (Facebook friends with Lupus) have lost at least 7 or 8... or more of our Butterfly Friends to Lupus!

I just got word today of another really awesome friend, John who once again lost his battle at much too young of an age to this hideous disease.

Over the past two weeks or so, he is like the 7th person, many of then very young who lost the battle to this disease that continues to ruin our lives, take our quality of life and destroy it, and then take our life way before we should ever go from this world,

It leaves us here with an empty and frightening feeling... one day you are okay, the next extremely ill, and the next have passed away.... leaving friends and family wondering when a reason and a CURE WILL BE FOUND!


It is insane to watch so many passing away of this and other autoimmune diseases, but Lupus seems to be one of the top killers, in this realms of illnesses,

My heart and prayers go out to all of the family, friends, and Facebook friends, in which we bond with... the we also feel the loss of yet another friend..

So May John family know he is in a better place, free of illness, pain and suffering, along with Ashley, Aubrey and several others that have been on Facebook since January 1st.

Folks IT IS TIME TO STOP THIS HORRID NIGHTMARE OF AN ILLNESS IN ITS TRACKS!

We need MORE RESEARCH, A CURE, A REASON WHY OUR IMMUNE SYSTEMS SUDDENLY GO NUTS AND TAKE OVER EVERY PART OF YOUR LIFE!!!!


May all of them rest in peace... and May all of the family and friends find peace and comfort knowing their loved ones are no longer suffering....



Boron Borax Therpay for Arthritis, Osteo,RA, Osteoporosis, Joint Pain, Inflammation - A Natural Supplement we often Lack - been known since the 60s

I happened upon an article about Boron or Borax therapy, that proves to be extremely interesting. I know that Borax that I buy in the box and put in my laundry is an all natural type of supplement, and I had heard about studies on it back in the 60s and the health benefits it has on us.

We NEED an amount of Boron in our systems, to help keep us from having JOINT PROBLEMS, arthritis, stiffness, swelling, osteoporosis, even helping to keep you from having kidney stones, and so much more. I had forgotten about it until I read another article this morning, and I am doing some research on it, but I think I will take some Borax (i just used the rest of my box in with Arm and Hammer Washing Soda and mixed them, so I will have to buy another box, but basically it is the very same as going and buying Boron Tablets. 

You can mix like an 1/8 of a teaspoon in a liter of water, and drink it. There are several ways people do it, drinking it during the week, and then not on the weekends, or drinking it one week, and not the next, and alternating. BUT after reading several articles on this, I think I will buy a new box and give it a try. I looked up the pills, but that means another expensive and it is all the same. 

One in a box for laundry and cleaning and the other in a pill form, of the same thing. I think it is well worth the try when you read about the outcome from many people... and of course our doctors, and pharmaceutical companies do NOT want this information to become viral, because if what I am reading it true, it would put some out of a job, and do away with some of the horribly expensive medications we are given.... I am still reading on this but here are a few links....



http://www.health-science-spirit.com/borax.htm


http://cheflynda.com/…/the-inexpensive-arthritis-osteoporo…/


http://invalid.invalid/


And you can do a search and find all type of articles about it...

I am very impressed as to what I have read, and as I said above, I had heard about this several years back, and seen a new article about it, so I decided to do a bit of research on the subject.

I have to go to the market and get a new box, since I just emptied mine and mixed it with Washing Soda, I mix both of them and put it in my laundry, and use it around the house as a natural cleaner, with no toxic chemicals in it... 


Of course before you try it, I would make sure it does not interfere with any of your others medications, and you may want to ask your physician. Although for myself, since it is a substance in our bodies, that we probably lack due to all of the other junk and chemicals we put in it daily, I see it like a green tea pill, or other types of supplements. I already take B-12 in pills and monthly injections.

But, as I said I am NOT a doctor, so make sure you do what you need to do before trying this, or anything....

Awesome Article from the National Pain Report ON Treating The Patient Not the Label




 Terrific Article on National Pain Management - ON Treating The Patient - Not The Label







 

http://nationalpainreport.com/treat-the-patient-not-the-label-8829300.html


By Terri Lewis, PhD
Terri Lewis, PhD is a frequent contributor to the National Pain Report. She is a daughter and a mother who has witnessed chronic pain first hand. She currently serves as an Assistant Professor, Rehabilitation Counseling and International Programs Consultant at National Changhua University of Education in Taiwan. She originally published this column on Linkedin on January 17.



Follow on Twitter - for National Pain Report

Monday Mornings Latest Addition of All Things Autoimmune from Lupus, Chronic Pain, the Environment, and much more!

Monday Mornings Latest Addition of All Things Autoimmune from Lupus, Chronic Pain, the Environment, and much more!


https://paper.li/ravishingrhia/1438808814#!headlines


Autoimmune Arthritic Systemic Life Daily – Rhia

 

 

 

Glenn Frey of the Eagles & His Suffering from RA & The Medications and Treatments that can be almost as bad as the diseases....

Gosh How many of us discuss this daily! With RA, Lupus, and any type of autoimmune diseases, the medications themselves can cause as much havoc with our bodies as the diseases themselves. Do I ever know this one, after the double set of cellulitis on each thigh, that then turned into abscesses, that took over 7 MONTHS to finally get to the place that I am not on antibiotics, they are not debriding them weekly, and then I have had double pneumonia at least twice... I know for a fact that one of my RA biologic medications caused the cellulitis that turned into the nightmare of abscesses. After having those incised, and for weeks they were still not healing, finally I was sent to a wound care specialist at Charleton Methodist in Dallas. I have no doubt had I not went to them, I would have been in the hospital with IV antibiotics and no telling how bad of shape I could have been in... I was so terrified of the MERSA virus being a part of it, I kept seeing that those two huge holes in my thighs were turning almost a dark brown/blue in color and I feared the worst each day...although the left one finally sealed over, the abscessed again, had to be incised again, it healed just before I went to the Wound Care Place... but the right one was 7 trips for 7 weeks and it just finally sealed over about 2 weeks ago... yet the doctor released me, and said it is still healing some on the inside... each day I have to check it though to make sure it is not abscessing again. SO FAR I have been fortunate... even with the double pneumonia, Ive had it at least 3 times, once before being diagnosed with the autoimmune illnesses... and even though I probably should have went to the hospital, I stayed at home, done everything the doctors told me to do, and made it without having a hospital visit... BUT, that does not mean that it will not happen... I know now what to watch for... I had no signs of having pneumonia the last two times other than a severe headache, then I began to hallucinate, and finally figured out I was running a high fever... over 103 degrees... which sent me to Urgent Care immediately! Again, I was one of the lucky ones... but it meant no more biologics for now, they took me off the MTX, which I had been on for 5 or more years... and FINALLY after having my stalled pain pump replaced, my Rheumatologist started me on Minocyline... an antibiotic they use for RA.. BUT, I figure I will be going on Xeljanz, within 3 months... yet, the RA and Lupus are continuing to take their toll on my joints... I have an 80% compressed disc in my neck, and need surgery very soon....and I still need the lower lumbar/sacral surgery... both I know are getting worse because of the Lupus and RA... so are my hands, fingers, thumbs and wrists, that are showing signs of looking crooked...especially my thumbs which hurt so badly.... I have lost a great deal of strength and grip in my right hand, and I am right handed.... I just yesterday threw out 3 MONTHS worth of that one biologic... and it almost made me sick to pitch out medication, that probably cost thousands of dollars... but I cannot return it, I cannot do anything with it, and I do not wish to ever try that one again... not after what I have suffered through... so to see others, and then see that these diseases do not show any mercy... they effect the famous, the folks like myself, the young, the middle aged, the elderly... and can take a life so much, much earlier than should be taken... it is a crime, that until research finds a cure, a reason, a way to stop these hideous illnesses in their tracks... none of us are immune for sure... 


A Few pics of me Signifigant especially to me but hopefully an inspiration to others also




I never thought I would ever see the day, I could fit in these jeans again. I have had them for more years than I care to tell, something like 20 at least - and after I was diagnosed with Lupus, RA, Sjogrens, had all of the surgeries, and then the pain pump put in my right side, I honestly never thought I would be able to wear these, or any waist line high type of jeans... thank goodness I have always been a huge fan of low rise jeans, they fit under the pump... but recently I lost some weight and decided to drag these out of the back closet, wash them and give them a try! And Ta-DA! By heck they fit!!!!!

So, for me this was a Kodak Moment... after going through the weigh issues after medications, surgeries, and I would take some of it off, then have surgery again, could not exercise etc.... or would have to be on high doses of corticosteroids for a flare, and here would come the weight on again.. I have been able for the most part to keep it to a decent level, but it was still depressing for one, to have issues that you have no control over that cause weight gain, loss of teeth, hair thinning, skin discoloration, not including the scars from many surgeries, knee replacements, shoulder replacement, the pain pump incision and also it sticking out from my right side.. so this was a moment for me, that made my day, week, month and part of the year!

I SHARE these with you... in a two part scenario, for me, for one, so I can see that I can still have some what of a decent figure, even though all I have endured... and then of course with my age, etc that contributes to some weight issues, plus I had battled my weight all my entire life after being an overweight teenager... So I made these this morning, for a 2nd part to INSPIRE ALL OF YOU TO KNOW  YES there are times we look and feel like HELL! But then there are times like today for me, THAT I WAS ELATED TO KNOW that I could still put these on, and love the way they looked on me ) So remember to record these types of milestones in your own life... and share them to inspire others...

Pain News Network Articles and Information


NO "Epidemic" of Overdoses.... see the article below... great example and reasoning...


http://www.painnewsnetwork.org/stories/2015/6/12/there-is-no-epidemic-of-painkiller-overdoses#.Vp5PM_Y_Lh8.facebook=

here is another article from The Pain News Network talking about "urine tests"... and I agree they add 100's of dollars to a patients bill, and many of the times patients take them, due to metabolism, or NOT DOING the correct TEST (which I know for a fact had happened to a friend of mine) those "pee" tests can be NOT right! I usually wonder why the hell they bother giving me one... my pain pump gives me medications all the time, I take pain pills along with the medication in the pump, plus muscle relaxers, diazepam.... and so forth. I certainly do not NEED anything else, and would not dare even drink since now the pump is in (new new one and running) and I am almost back up to my dose before it had a motor stall. So, I know they check to make sure you are "taking" the medications... and of course if you have other substances that should NOT be in your system... the "reasons" somewhat make sense... BUT as I said, there are some of these medications that WILL NOT SHOW properly if they don't do a "special" test at the lab they are sent to. I can relate to the story in another article about the young woman who "fears" her appts at her pain doctor's. It used to be that way for me... and still is at times... we have such a horrible time getting the medication that goes into my pump.. and it is NOT expensive... that is the weird thing... it is actually much less expensive that most oral medications. But, you always go in with the fear that you won't get your medications, or something has changed (like now my pain doctor has a new rule you must have your medications in a "lock box" or safe" ) Which is a very good idea, if you have anyone else in your home... or have company over etc. But, I am not sure where a man standing in the waiting room got this idea, but he was asking about the lock box, and he was under the impression he needed to have his wife take a photo of her and the lock box and bring to the doctors office for her chart... I did NOT read it like that... but did understand the doctors are trying to get the CDC off their backs, so they TELL patients that, so patients are more aware of "protecting" their medications. NOT leaving them out for anyone else to get hold of... and keeping them in a safe place, especially as I said, if you have others in your home or people that visit, it is a good idea to lock your meds up. One time years back, I had a medication that was a nasal spray for migraines. I had picked up a brand new bottle from the pharmacy, but it was one of those HOT TX SUMMER days... and I guess I did it at lunch time and left it in my car by accident when I went back to work... Well the entire bottle, "siphoned" it's way out of the container, and into the other bottle it was in... plus it was such a tiny amount of liquid it has almost already vaporized by that evening when I got home... I had mortal HELL getting a replacement. I mean it was evident, when I took the bottle in and showed my doctor, then the pharmacist what had happened... but believe me, after that, I was much more careful about where I left my medications. I am so diligent about where my scripts go, that I take them to the pharmacy immediately, and if I don't need them that day, have them on hold for when I do... that way, I don't misplace it and have hell... no matter whether a pain medication or whatever type of medication it is... I try to turn those scripts in immediately. Plus my pain medications are from a specialty pharmacy... so I don't do anything but request my meds when they are due from my doctor, and they take care of the rest. There are times though that they "delay" getting the script to the pharmacy, and I am on pins and needles, if I happen to be running low of meds... so I totally relate to sometimes being "fearful" of seeing your pain specialist...


http://www.painnewsnetwork.org/stories?category=Opinion

Above is a link to another article "Why I am Afraid of going to my Pain Doctor Appts"


http://www.painnewsnetwork.org/stories/2015/9/20/cdc-opioid-guidelines-would-institutionalize-malpractice#at_pco=smlrebh-1.0&at_si=569e5754f5ee1daa&at_ab=per-2&at_pos=0&at_tot=5


Setting The New Year Tone as I Deal With RA, Lupus, Sjogren's, Trying to Complete a 3rd book, Life, Family and so much more...

Every Year so many of us have a "List to Live By"... for the New Year. Some call it a list of "resolutions", "Changes", a new way, a different attitude, motivation for making things different, making what you want in life happen... Whatever you "call" it... we try to set the "tone" for our New Year.

Whether "chronically ill" or not... each of us want things to "change". Now, many of us may be completely satisfied with our life "as is"... but human nature gives us this innate intuition to never stand stagnant, to always want to evolve, to make our mark on the world, or at least our own home and community. As a whole, although when you hear the news it does not sound like it, I still feel "human nature" basically wants to "do well"... to help, to be that change maker...

As I have prodded through these past 7, 8, 9 or more years of chronic illness and chronic pain, I've noticed that it seems for the majority of us that are chronically ill, whether it is an Autoimmune Illness, Heart Disease, Cancer, or any number of diseases, syndromes and/or illnesses "we" as a whole tend to try even harder to "change" what that disease is doing not just to "our bodies and lives" but to all the others we see on a daily basis suffering from the very same illnesses. We tend to be more a part of the "change makers", whether that means a local community awareness, or a National Campaign and being an "Ambassador", Volunteer, Activist, a "voice" such as helping so many of our non-profits, such as The Arthritis Foundation, The Cancer Society, The American Heart Association, Lupus Foundation, The Pain Foundation, and the many, many, charities and organizations that "go to bat" to fight not only locally, in our states, but nationally to make awareness known within our Governmental Bodies, to get finances for more research, the race for a cure, for answers as to "why" some of us suffer so badly from such horrid illnesses, what causes them, how to treat them without destroying a patients life, and how to give people back their quality of daily living!

So, when our chronic illness and/or oain issues bring us to the place we no longer can "work" our jobs, or do many things we once could do, we find ourselves seeking a way to help STOP these diseases from ruining more lives in the future. With the technology, and how we have evolved globally, with a few key strokes, we can contact our state, our county, our city, and our National Government Officials. We can provide all types of very usual assistance without leaving our homes to "make that difference" we so want to make in life. I know some people that probably spend more hours a day now as a volunteer, activist, etc... than they did actually working a 9 to 5 job that nearly killed them... but we can "take off" for a week if we are ill, or work an hour a day, or a few hours a month.... however much "we" want to put into assisting these foundations, is so appreciated. And many of us, like myself have been even honored and rewarded by being sent to Washington DC to stand on Capitol Hill and tell our stories! So, activism, can be and is such a rewarding part of a chronically ill person's life. We feel we are "contributing" even though we may not be able to work hours a day, or leave our homes... we "make a difference"... and not even spend a penny... but give of ourselves and our time... which is definitely valuable... sometimes more than money... the value of "our time"....

I had been looking on Twitter a bit ago, and there was a great idea that I decided to not only to share, but to do. Take an empty jar, and each "good thing" that happens within the New Year, jot it down on a small piece of paper and put it in the jar. Then in the start of the next New Year, get those out and read them. As I said, all too often we "recall" all of the crappy, the bad stuff, that happens within a years time, yet we don't remember those "good moments" and maybe they are "small" but memorable. Then see just how many have filled that jar from that year before. I have already been able to write down 3 or 4 things and put in the jar, and this is the middle of January! Maybe I will need 2 jars to "hold" onto those good moments... those moments that help to make the bad ones seem not so bad.

So, the "title" of this post, is a bit deceiving in some ways. I gave the impression this was going to me more about my own "revelations" for the New Year, and the "tone" of how I "want" my year to be for 2016. I've never been one to set expectations to high, but I do try to give myself "goals" to achieve... yet I have also had to learn that when you have illnesses such as Lupus, RA, Sjogren's.... and so forth... those things you "want to achieve" may get put on the back burner, for those times you are in a "flare", or you are having surgery, or sick, or going to the doctors... there can be all kinds of things that interfere with those "good intentions"... and it is not that you may not achieve them... just not in the time frame you thought you would. I had wanted to be a published author for 20 years plus, and then was with two books within less than a year between them! My 3rd book, has been sitting here mainly completed on my computer, but needing to be put in some type of order now for gosh 3, 4 or more years. But, life and illness... have had to come first... thus the book WILL GET PUBLISHED, but I no longer "pressure" myself... Due to things beyond my control over the last almost 3 years, I began getting it together, then had to leave it... now it will take me weeks to even get back into where I am, what I have in it, and how I want to continue... and I will get there... but I have to feel well enough "physically" to be able to sit at the computer several hours at a time, hopefully with little interruption for weeks, at least 2 or 3... or I will never be able to "delve" into where I am, and where I want to go forward.... so I may not be able to do as much as I want on it, until I have the cervical neck surgery... I can't sit very long at the computer typing right now because of that disc... when it presses down on the nerves, and I have pain in my shoulders and down my arms into my thumbs... it makes it very difficult to "find my voice" to write...

It is different with my blog... I can write a bit, get up, do a few things, and come back to "finish" the post...

But, the "tone" for my 2016 is to try my best to get as far on the 3rd book as I can to prepare for it to be published. I also need to get myself back into "physical shape" and I mean back to walking when it warms up, taking the dogs out walking, and getting out of the house... but I also face at least the one surgery... and maybe two this year... my lower lumbar and sacral spine gives me hell when I try and sit for very long also... and after Friday's ordeal of driving and doctors in Dallas all day long, I have suffered with a great deal of back and side pain... hell I've wondered if I have another kidney stone, the pain has been so bad off and on...

So, the "tone" again is to do as much as I can personally to my home, bless it's heart it needs so much work, and myself... and try to "enjoy" each day whether ill on the sofa, sitting here at the computer writing, or online...walking my pups... walking myself... and hopefully spending several times this year for a day or overnight stay at Winstar! Gosh how I miss that Casino! I walk in and the world melts away, at least for that time you are there...

So, take time to "set your tone" for 2016.... make yourself a "good moments" jar... and in 2017 (when I get to trade in my Prius for a New Model) see how many of those truly make you smile.....

Just a Quick Hello and more to come.... Wound Care appt(Last) hopefully today and my Rheumatologist appt. so a LONG DAY in DALLAS!

Just wanted to touch base and say "thank you" to ALL that commented on the CDC docket about the Pain Medications. Over 4,000 commented, and I had hoped for more, but I don't think that counts anyone who also "wrote" in, and I am sure some did send letters...

I am headed for Dallas to hopefully do the final visit to the Wound Care people for my abscesses. It got detained due to the pain pump surgery, and the holidays, so now I have that and my Rheumatologist appt both today... and I hate having to be gone to Dallas that long... even though one is mid=morning and the other early afternoon, it makes for a long day driving... especially when I am NOT headed to the Win-Star! :)

I hope the hell to be able to go soon. I am so sick and tired of either cleaning, cooking, being ill, having surgery, getting over surgery.... taking care of doctors stuff, insurance stuff.... and seeing doctors... I am ready for a break, even if for a day.... hopefully overnight....


Anyway, I wanted to stop in, and say that I am here, been somewhat busy and also under the weather this week a bit.... not sure other than I've been exhausted... but after running a high temp all weekend last weekend, I feel like that and everything else contributed to it all...

More over the weekend....

TODAY IS THE FINAL DAY FOR COMMENTS ON CDC GUIDELINES FOR PAIN MEDICATIONS! PLEASE GET YOUR COMMENTS IN!!!!!

http://www.regulations.gov/#!docketBrowser;rpp=25;po=0;dct=PS;D=CDC-2015-0112


ABOVE IS THE LINK TO GO AND COMMENT ON THE CDC GUIDELINES THAT CAN EFFECT THOUSANDS OF PEOPLE, POSSIBLY MILLIONS OF CHRONIC PAIN PATIENTS AROUND THIS NATION! 

TODAY IS THE LAST DAY TO VOICE YOUR CONCERNS, COMMENTS AND SO FORTH! PLEASE TAKE A FEW MOMENTS AND DO THAT. YOU CAN REMAIN ANONYMOUS, AND DO NOT HAVE TO PUT YOUR NAME IN... 

THIS IS OUR TIME TO TRULY SPEAK UP FOR ALL OF US WITH HORRID PAIN ISSUES, AND KEEP THE GOVERNMENT FROM TELLING GOOD PHYSICIANS HOW AND HOW THEY CANNOT TREAT THEIR PATIENTS!


I GOT A NEW "PATIENT" INFORMATION PAGE LAST WEEK AT MY PAIN SPECIALIST! IT WAS A NEW WAY THAT I KNOW THE "GOVERNMENT" MADE THEM WORD, THAT YOU MUST KEEP YOUR MEDICATIONS IN A LOCK BOX, BUT YOU SHOULD TAKE A PHOTO OF YOU AND YOUR LOCK BOX TOGETHER AND TAKE IT INTO YOUR PHYSICIAN!!!

NOW I TOTALLY AGREE WITH LOCKING UP MEDICATIONS.... THAT IS AWESOME, AND I FEEL EVERYONE SHOULD, BUT FOR THE GOVERNMENT TO MAKE PATIENTS BUY A SAFE, AND THEN TO HAVE TAKE A PHOTO IN FRONT OF IT, AND GET IT TO YOUR PAIN DOCTORS, IS JUST GOING A BIT FAR. I HAVE NO PROBLEM AS FAR AS ME WITH IT, BUT I KNOW MANY OUT THERE, THAT CANNOT AFFORD A LOCK BOX OR SAFE....

SO PLEASE PUT IN YOUR THOUGHTS......

AS OF NOW THERE ARE 3,825 OR SO COMMENTS, WE REALLY NEEDED 3 OR 4 TIMES THAT MANY AT LEAST!!!!