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

Strange Emotions, Being Physically Ill again, and something "odd" come over me at my Mom's house....

I just don't feel like speaking about the election, other than the fact I am glad it is over, I did my part and voted, and I pray somehow our country gets united and turned around in the right direction. We need that badly, more than the "battles" that were fought this past 18 months or so. I will say I've been really SICK AGAIN... I've had those cold, horrible sweats, so badly, I had to change all of the bedding, my clothes, and wash everything two or three times since Sunday night. I've not really been able to get off the sofa other than to make myself get up and change, since I was freezing, yet soaking wet from cold sweating, and I've had another one of those horrid headaches, that I just almost feel like nothing I try is working. I did run some fever off and on, but mainly severe, severe joint, muscle and body pain from head to toe, that "feeling" again like my joints wanted to "lock up" almost as if I was having a seizure... but as far as I know, I've done this now about 4 times or so and I don't think it is any type of seizure, it just feels that way, due to the muscle spasms and severity of pain in my joints, muscles and body. I had been really busy for the week or two before this started Sunday night. I got rid of that old loveseat recliner, by taking it apart like I had said earlier, and then I decided to move my television to the front windows and I turned the sofa around where it faces the front windows. I am going to get rid of the rug I have now.... and get a much smaller one that is round, where it does not sit under the sofa at all. 

Then after I see if that helps to stop the dogs from acting out, and peeing on the rug, if it is not under the sofa, and now the loveseat is gone, then I may by a new sofa, smaller and one that had no material close to the floor. Anyway, I had to move two huge glass cases around, that were each beside my television, and I spent the good part of a week, dusting, washing all of my glass things I had in there, and making things free of dust and the collection of that "gray powder" that seems to seep into all of our homes in this part of TX. I still have some things to go, and then I also redone my bedroom some, trying to get ready to bring my HUGE plants in... it is time to "de-bug" them, and get ready to put them in from the cold coming soon. 

They are all houseplants, but they LOVE the outside all spring and summer, so they really go into shock for a couple of weeks or more when I have to bring them in... my fern, my palm (which put 4 huge prawns on it, one of which is still not tall enough yet, but two of them now are at least 7 foot tall!, Then my ginger plant inside is at least that tall, and getting bigger everyday. My fern is about 15 feet around, and then I have several of the airplane plants that are also HUGE, and heavy... so it is a job in itself to get them all cleaned up, and then get them in the house.... It takes me days to clean each one, and then find room enough to put them... but right now I am just trying to get to feeling well enough to even take a shower, so I can get to the market... I need to go, but I am still in such pain, and so totally exhausted from whatever the heck is going on with me, I am not really feeling like even trying to get in the shower, and I know I NEED TO! Anyway, I wanted to touch base, and let everyone know what is going on here.. I know there are a couple of people I know that are also battling some bad illnesses, and like me facing surgeries possibly. 

I know that is one issue causing me pain, and possibly making me feel so bad... the stiff neck and severe headaches and back, hip and pain down my legs are all probably from needing the neck and lumbar back surgeries... I wanted to get those done, but it never seems like a "good time" to schedule them... and now here come the holidays and everyone will be busy with those...so I am not sure what the hell to do... I am still waiting to find out about what is going to go on with the other house... I had a very "strange" issue over there Sunday afternoon... I don't want to go into details, but for the very 1st time, when I just drove up into the drive, I had the "oddest" feelings, and then I almost could not "go inside".... I don't know why, I've not felt that way before, and even going and having to put some paperwork in the car, I felt the strangest sensation just sitting in that car.... I am supposed to drive it after I turn my Prius in in early 2017, but now I am not sure I "can drive" that car.... not due to the condition of it etc... it is in awesome shape, just needs tires, but there is something about the house and the car that really gave me a very odd feeling, and I still had "chills" up and down my spine as I drove away Sunday afternoon.. I've been too ill to go over as I usually do to check on it, since then, but something really came over me, that I had not felt before..... just really has shaken me up, plus I had a really horrible night terror on last Friday night, that was the worst in years.... I was so upset, I was not sure I could even stay alone anymore, I was so shaken by it.... alas, I have not much of a choice, me and the two furkids.... but anyway... I am still feeling "off" mentally and then physically still feeling not well either....

WEGO Health Blogger Challenge 2016 for Day 8 "I think I I can" OR "I Know I CAN".....

WEGO Bloggers Challenge Day * 2016 - "I Think I Can OR "I know I Can?"

I "think" I can get over the "hump" of losing my Mom so suddenly, and find a renewed life ahead of me - I need to give myself more time.

I think I can get my home fixed up and it be everything I want it to be.

I think I can get back into my writing and blogging, and make my 3rd BOOK a "Best Seller".

I think I can finally face my cervical neck surgery, and my lumbar surgery and they will relieve more of my pain.

I think I can walk through this life, even with all of the medical issues that surround me, and continue to find people that care about me, I think I can find new friends, and move past all of the loss, of not just Mom, but the loss of a relationship, find understanding, the loss of my dear Tazzy, my Pug, who I still miss daily, and move past the emotional pain that continues to dwell within and make me feel as if all I've seen in life is loss.

I think I can do MUCH of the "renovations" to my home, myself, and then "face the facts" there are some things now, my body no longer will allow me to do.

I think I can become a much better activist, advocate, volunteer and "voice" for those who suffer from such horrendous chronic illnesses and pain.

I think I can live my life alone, with my pups, and find the place where I no longer feel "alone or abandoned".

I think I can continue to make great decisions about my future, and continue the path of knowing more about medical research, chronic ailments, and give others hope through my own research and going through what I have been through. 

"I Know I Can!"

I KNOW I can go back to Washington DC one day, and give Congress once again my own life's issues with chronic illness, chronic pain, and how many of us suffer horrendously, and make A DIFFERENCE!

I know I can find more time to write, to work on my painting, my quilting, my gardening, and be able to get on the path, of feeling good about myself again.

I know I can LOVE, my Kids, Grand kids, and family even more every day. I know I can show them that they are my entire world. 

I know I can get these two pups to QUIT peeing in the floor when they are upset with me!

I KNOW I can continue to make this journey through life by myself, take care of myself physically, mentally and emotionally, and gain more insight to myself in the process.

I KNOW I CAN STOP having HORRIBLE NIGHT TERRORS!

I know that although sometimes others do not say it, they are proud of my "charity" works, and I will learn that I DO NOT have to have a pat on the back from anyone else but myself.

I KNOW I CAN GET THE HECK WELL! I AM SICK AGAIN!

 

I know I now can face my own "day of reckoning" when that time comes, whether soon, or decades from now, and I am NOT frightened. 

#HAWMC

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