WEGO Bloggers Challenge for Monday November 14th 2016 - Monday, Monday.... "Purging what "burns me out", makes me upset, gets me down and out" so I can "deal" with it on Tuesday

This is an easy one. TOO MANY IRONS IN THE FIRE AND TRYING TO KEEP THEM ALL HOT AND READY TO GO! 

Trying to do 100 things at once, being ALL to everyone and not able to just say ENOUGH, I NEED HELP AND I NEED A BREAK FROM THE INSANITY, THE PAIN, I NEED THE SURGERIES, AND I WANT MY LIFE BACK WHERE I CAN DO MY WRITING, MY ADVOCACY AND BE READY TO HIT WASHINGTON DC IN MARCH, FOR THE AF SUMMIT READY TO "ROAR" AT ARE "NEW" CONGRESS!

Since my Mom getting so ill so quickly, and needing my help 24/365/7, and then passing away so suddenly this past June, my life has turned into a disaster beyond anything I could have ever imagined. Being an only child made that even more difficult because it was ME and only myself to do everything. When you are already chronically ill yourself and your own "caretaker" of 13 years suddenly has walked out a year before, I was left to try and hold on taking care of her, myself, and ALL that has gone with that, and then after she passed away, I am still reeiing from "wanting to get back to having some of my life, having surgeries I need, writing and doing my advocacy work. 

I thought once "most was settled" just before the funeral, then just after, some type of somewhat "normal" would begin to come to fruition. 

Boy, what a "slap" in the face I got, with paperwork, and all that STILL HAS TO BE DONE, even though she is no longer with us, I miss her dearly, and although I "thought" we had everything in order long ago, I found out that somehow things got "changed" that I was not made aware of. That has caused hard feelings, and those things were the very last I wanted for myself and my two grown children.

So, hopefully by "telling" this once again, and often what my writing can be for, is to "purge" some of what is stressing me so badly, and help to get my surgery on my neck done at least before the end of the year, and allow me to have back some of that normality I so need in my life.

I LOVE my Mom, and I MISS HER, but at times I am so UPSET AT HER, for "changing" things that did just what I told her it would leave harsh feelings for those left here to continue on. 

#HAWMC 

 

 

 

WEGO Bloggers Challenge for Sunday November 13th - "One of the "BEST THINGS THAT Happened this past week?"

November 13th, 2016 WEGO Health Bloggers Challenge for Friday - "Finding the "good" from this past week"

I seem to not have "many good things" as of this past about a year. So, when those time come along, they are certainly not taken for granted, and I try and hold on to that good memory, so I can get through all of the circumstances of pain, burn out, and pure life's grief it can give to us....

#HAWMC

Having the "most" of the past 5 days of this week, where I was able enough to get some things done in the house, like moving some furniture, dusting, and doing that "deeper" cleaning, even washing the drapes (although I don't have them back up yet) & also being able to do some limb cutting from my trees that dearly need it. The drought here several years back did a number on them and almost killed them. So, they needed to be pruned back really far before winter col, cold hits, so they will have a change to put some "good" new growth on, and not look so "bare" in the inner parts of the tree.

I have a great deal more to do, but I got some of that cut up and put out for the trash collectors this morning, Now the larger limbs I have left I have to get cut down small enough so they will pick those up.

I also made a decision (FINALLY) to order a new area rug for my living room and have my eye on a sofa that will be high enough ff the ground the dogs will no longer be able to have their "peeing contests" when they get mad, and soil the carpet OR the sofa.

I am hurting from head to toe, I am hoping to have my neck surgery done in December, and try to help stop this pain. It is another reason that I am not keeping up with my blogging and writing, I am in so much pain, on my right side, shoulders,hand,wrists, swelling, now a lump at my thumb, and I am hoping that they put me on Xeljanz, because the MTX for one is NOT working, and for 2, I am having side effects again from it...

So, there is what I considered "good bits and pieces" of my week, last week.

WEGO Bloggers Challenge for Saturday 12th - Time to "get real" with your doctor

Saturday Day 12, 2016 - WEGO HEALTH'S BLOGGER'S CHALLENGE - WHAT DO YOU REALLY WANT TO TELL SOME OF YOUR DOCTOR'S AND DON'T HOLD BACK!

Well for one, I am sick and tired of doctors thinking that just because I patient may do research on their illness(es) or look things up, I cannot fathom a doctor getting upset or calling a patient a "moron", Layman, and telling them "you do not know what you are talking about".

I agree there is a OVER ABUNDANCE of some really ridiculous information online for everything! Not just the medical field, but just about anything you want to search for.
One has to learn how to "think" about what you read or hear when it is NOT a specialist, and try to weed out what really is silly, or does not apply to your case.

Plus for myself, when I go into my doctors offices, and ask questions or tell them about something I've read online, often times "most" of my research, is usually almost right on target. Not always, and I have one physician that LOVES and "educated patient".

But, one is a complete jack-ass to put it like it is, he ignores anything I have to say, he tells me I am basically stupid, and leave the "doctoring up to those who do have the "knwledge and education" to do the "medical work".

I SO would love to tell him, that I have been to "some so-called" doctors, that not being narsaccist but I KNE more than they did about some things. When you are chronically ill, many of us DO KNOW more about our conditions than doctors. WE KNOW our bodies, we know what feels right and what feels wrong. We understand the articles, even bloggers posts we read, and they also know many things our physicians never are even taught, especially about autoimmune diseases. My own pain doctor will admit, that I know more than many medical workers, including doctors, nurses, PA's, and NP's when it comes to my own conditions, because I do research things, I do decipher what is "not right" and what may be deemed something critical in my situation.

I would love to tell every doctor I have been to and others, that they NEED to be EDUCATED MORE on autoimmune and rare illnesses, because in many cases now, WHAT WAS RARE, is NOT that rare anymore.


"THAT IS MY STORY AND I AM STICKING TO IT!"


#HAWMC

#HAWMC@wegohealth

WEGO Health Day 11 - Bloggers Challenge a "TOP TEN "must follow" Lists From Facebook Twitter, and Blogs....

This one is kind of a mixed up "bunch" for me. I have those that follow me on Facebook, but they may rather follow my blog posts, or I know I have a good deal of following on Twitter. I really never have "kept up" with the number that come back again and again, but do know those that comment and read often, because they either give me a thumbs up, mention my "Newspaper" yes, I do have a Daily Newspaper I put out, FOR Chronic Pain, Chronic Illnesses and Dementia. I send it out daily on Twitter, Linkedin, FB, plus there is a follow page on my blog, in case you want to joint my daily Newspaper. I will say the newspaper "seems" to be giving people a great deal of information, because the articles are from reliable sources for the most part, I have also "tailored" it for those with the Autoimmune, Chronic Illnesses, such as Diabetes, Heart problems, and so forth, plus Chronic Pain, and all that comes with the controversy on it now, especially on our medications for chronic pain. Plus I added "Dementia/Alzheimer's" after my Mom passed away last June 9th, due to the fact I "feel" that it may run in our family, on Mom's side. Both of my Grandparents had it, but my Grandfather, had full blown very difficult Alzheimer's. Mom's turned into an aggressive, what we feel was the "Lewy Bodies" Dementia, that I watched take a woman of 78 years old, who could still drive, clean her home, and cook, etc... to within 4 months go to being bedridden, in diapers, could not even remember her home, who she was, and mostly had no memory most of the time of who I was. Within 2 more months it took her life. One of the most difficult times in my life, and something that has "changed" me forever, in SO many ways.... some good for the most part, and some may say things that may not be so good... but I know to just roll with the flow of it all, and NEVER take ONE MOMENT of life for granted.

So, Here is kind of a "mixed list" of blogs, Facebook friends, Twitter followers, and those that comment, and are "followers" in one way or the other....

Facebook Followers and I follow them also

Denise 

Venetia Shafer- FB

Amanda Matheny - FB

Cynthia Carr Czaplicki - FB and she really is wonderful about making comments and reading, plus she is a relatively new friend there. 

Betty Walters - FB

Raymond Veditz - FB

Judith Flanagan  - FB

Barby Ingle - FB

Nancy Hershalman Gipson - FB

Jean Marie Ely Breaux - FB

Jane Gill-Wilson  - FB

Blogs I follow (and love to tell others about)

Arthritis Foundation (I know it is a website but they have a blog also)

The Hurt Blogger

Rheumatoid Arthritis Guy

All Flared Up

Little Miss Autoimmune

Barby Ingle (all of her writing, articles, books & more)

Float Like a Buttahfly

Not Standing Still Disease

An Autoimmune Arthritic Systemic Life (of course my own  ;)

WEGO Health's Blog, & ALL of the Help. Challenges (good kind) and assistance they give to all of us!! (Website in general)

Creaky Joints

Twitter Followers

JoJo @SuzieMay08

Told You I Was Sick (Also great blog/writer!)

PajamaDaze

Arthritis Foundation

WEGO Health

Cure Click

Cluster Shade

Patient Power

Elizabeth@themamaspace

A Chronic Voice

 

And there are so many more, that either follow me, or we follow one another on Facebook, Twitter,Linkedin, Blogs, and even emails. There are many URL's that truly "help and guide me" at times.  US Pain Foundation, and International Pain Organization, Med-Page and any "medical newsletters I get and save. they are also a wealth of information.

So, to those who I may have "missed" here, I apologize, because I do see and read you, your posts, and know much about your lives and what all of you are going through.

 

So, Here are my lists!

 

#HAWMC  

 

 

 

 

and by the way, here is the link to my newspaper and the name of it!

http://news.autoimmunearthriticsystemiclife.com/#!headlines

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®

"All aspects of autoimmune & chronic pain illnesses, fighting to survive & grow past them"

 

 

 

 

 

 

 

WEGO Health Day 10 - Bloggers Challenge - Writing a post (question) about my condition and then "answering it"

DAY 10 WEGO HEALTH BLOGGERS CHALLENGE

Question:

Dr. "Rheumy" If I do more exercises than I've been doing, although I do walk, ride my inside walker/skier, eat more apples, lose 10 pounds, start getting up 30 minutes early and do Yoga, then stay up 30minutes later, and use a calming essential oil, that has citrus, Tangerine oil, Patchouli oil, & Chamomile Blue Light oil in it...oh and for the "brain fog" I use first thing a"Mental Clarity" Essential Oil, with Sweet Basil Oil, Peppermint Oil, Geranium Oil, Jasmine Oil, and follow what I've read exactly for a "diet" that "clears" the autoimmune system, of RA and Lupus, do you feel this will in fact "clear out" my immune issues, and give me back all of my strength, power, brain power, forceful way through life, be able to snow ski, take 3 or 4 week vacations, and be back to my old self within 6 months?

Answer:

As the "doctor" Dr. Rheumy tries not to laugh, or choke while not laughing, then would look me in the eyes as a patient, and at first say, those things are "good" for your overall health and well being. They definitely may give you "more days" that are with less fatigue, but, even with "all" of that work, that is what it could turn into, MORE Work, than your body at this point can stand. Which in turn could "weaken" your autoimmune system. You are already exercising, eating healthy, your weight is fine, and you are taking the medications prescribed for you. "Getting up earlier" and going to bed "later" although to do some "positive" may cause you to have less sleep which also effect your all over health, especially your immune system, that is "weakened". I KNOW there are some VERY excellent blogs, articles, even physicians, experts, and those online who want only to "help" others just like you. Yet, "some of those things" are not sometimes helpful but could cause more harm if mixed in with your regular medications. The essential oils are something you could diffuse and may give you some relaxation and then clarity and focus, or used in a bath, and apples are great for you always, most all types of fruit, and Yoga can help with "training" possibly the brain to not "feel so much pain" or give you more focus and calmness. YET, I along with every specialist, Regular physicians, experts, researchers, ALL will tell you, as of now, there is NO CURE FOR Rheumatoid Arthritis, nor Lupus or any other of the autoimmune illnesses. We have came a very long way with medications that can help the symptoms, and possibly "slow down" the rate your body is effected by these. But, no one at this moment has found a cure. I can ASSURE YOU that YOU AND ALL OF MY PATIENTS WILL BE THE 1ST TO KNOW, and come in FOR THAT CURE, WHEN THAT HAPPENS! That will be a joyful day for hundreds of thousands of patients just like yourself.

I "hope" I've helped clear up some things, as well as give you an idea of "what may" give you a bit of relief, or a tiny less fatigue, or even "more" better days than bad ones.

By the way, keep on "researching" online, BUT make sure you ask myself or your PCP BEFORE you were to try anything out there. There could be some people that want to "harm" more than do good.

#HAWMC

Day 9 - "Happy Hump Day" WEGO Health Blog Challenge - "What would be my "perfect" Day"?

First answer, going to the Casino... to stay overnight and get away from ALL of the illness, medications, cleaning, stress, loss of my Mom, and the grief from dealing with all that comes along with having to take care of everything after losing a parent or loved one. Being the "caretaker" before, while and after they are ill, and then pass away.

OF course that is a "1st" answer and it is extremely true, when it comes to wishing for the "perfect day" for myself right now. When "you" are chronically ill, chronically in pain, and most days you never know if you shall wake up feeling "good", "bad", horrible, or even on those rare occasions "WONDERFUL"; you hope for more of those wonderful days.

That does not mean ones that give me the time to go to the Casino for an overnight stay necessarily, but those or at least one or two, that give me the ability to get up, with pain and illness that is as less as possible. A day that the sun is shining, the weather is not to warm or not too cool, that day I can clean my home, go run errands, go to the market, maybe make a great meal, even in the slow cooker, play with my pups, have time to go outside, trim a few limbs from my trees, tend to my yard a bit, and even at the end of that day, not feel as if a "tractor trailer" had ran over me.

Yet, for many of us, we realize that "good" day, that leads us to be able to do those small or large things we want to do, shall probably lead to the next few days of being in pain, not feeling well, and having to "recover" from that one or two days we felt well enough to go out and feel "normal" for a bit of time.

For me, that is a perfect day. Those that come, where I get up, not as in much pain, not so fatigued, and I do feel like taking a shower, dressing up, putting on my makeup, fixing my hair, and going out to do errands, shop, wash my car, and not look "sick". It seems those days are rare. Oh, the shower, and running errands I do, but to really "feel" like dressing up, putting on makeup, getting my hair looking really nice, and then putting that "smile" on, and not looking worn out are the ones that are so far and few between.

At times, I feel that is why maybe I find myself slipping back or shying away from taking that overnight trip away. I may feel wonderful while I am out and about, wherever, Casino, shopping, yard work or whatever, because I realize that more times than not, I will "pay" for that 1 or 2 great days.

A day, two, three, a week, weeks, months.... most of us would give a great deal that we had, if not everything we had just to have a "normal' day, week, month, or year. Without being ill, without needing surgery, without needing many medications, without pain, and time we can spend with family, friends, on a job, in our home, just to "feel well" for a brief and wishfully a "lifetime" of not being chronically ill, or in chronic pain. 

Alas, since yesterday was an "election day" of a "first" ever for this nation or the world for that matter, "FREEDOM" is what I and ALL that are ill wished for a day, that is perfect 'FREEDOM FROM THE GRIEF OF CHRONICALLY BEING ILL AND IN PAIN".

#HAWMC