Showing posts with label #HAWMC. Show all posts
Showing posts with label #HAWMC. Show all posts

Tuesday, November 29, 2016

WEGO Health Blog Challenge Day 27: Sunday 11/27 Sunday Selfie! OMG and do not be "shy"? I scare the neighbors most mornings!!

This is my favorite "Selfie of mine" In fact, I am going to have my stylist cut it like this hopefully this week, and will put the Burgundy color in it. My hair is blonde, so it does not "hold red" well... but within about 2 to 3 weeks of washing, it will be the "highlighted blondish red, which I love)

WEGO Health Blog Challenge November 27th Sunday, 2016

Sunday WEGO Blog Challenge - November 20th 2016 - 20th BLOG POST! What has been the Highlight of my Actvist Journey So far?

Sunday WEGO Blog Challenge - November 20th 2016 - 20th BLOG POST!  What has been the Highlight of my Activist Journey So far?

Out of ALL the things I've learned and gotten to do that were highlights in my activism so far, going to the Arthritis Summit in 2014, to do my dream (Stand on the White House Steps and tell my Story to All of CONGRESS) I must say has so far been the real moment that I felt that I WAS MAKING a difference!

Being a writer, since the age of 13 years old, I had two goals, one to have a "book published". I told my kids that if I never got to "see" that happen they had to promise me to try and get at least ONE published. Thus in 2012/13 that goal came through twice! With the self-publishing and I used Amazon; although still a great deal of work, if you want to be frugal yet get your book(s) out there, that was my way to go,

So, I had many poems, short prose, and had began on my story several times. I wanted to tell my journey throughout the chronic illnesses and pain, but also some other very personal terrible things I lived through. I am a huge advocate for Women's Rights, and not being subjected to abuse, rape and such. A piece of the book will include that, plus my journey that began in TX, took me around the Western part of the Nation, to live in Lancaster CA for a short while. Then I came back, and went through an entire series of events; honestly a role of changes, that I am proud I got to go through. Without those, I am not sure I would have survived and been here this morning to be blogging this.

After several years I literally made a circle, and came back to my hometown. That was the one thing, I had hoped I would not have to do, come and stay permanently here. It held many lousy memories, and times that I did not want to face again. I had "been there, done that" and was so hoping all of that was behind me. I can tell you, life just like a wedding band, or the moon, is always a circle. Many of us do exactly what I did,

So, I lived to see two books published, and although they are not "chart toppers" I did get to live that dream.

I desperately needed something in my life, once again that I felt would truly help to change things for others, make a difference, and since I always wanted to be in the medical field, the entire "medical research", being a voice, advocate, activist, and Ambassador, in the realms of what I felt may do just that.

Long before I really "got extremely chronically ill" (I have lived with severe Migraines and joint problems since I was 17 years old), I kind of viewed an "activist" as someone standing on a sidewalk, or on the steps of some place, shouting, screaming, making waves, and that was how you tried to get your point across.

As I became aware of my ongoing health issues, I began to view the act of being an Advocate could be anything but "picketing", and there was non-profits, individuals that especially due to Social Media and the Internet who were making changes in so many ways, but especially when it came to Chronic Pain, Chronic Health Problems, from Autoimmune Illnesses, to Heart Attacks, to Degenerative Joint diseases, and MANY others, such as Fibromyalgia.

I began asking questions, researching some of the non-profits, looking for groups on Facebook, and saw that MANY of these types of opportunities are out there, and in TOO MANY when you are someone who would like to DO IT ALL!

I found out more about the Arthritis Foundation, through Tiffany Westrich-Robertson who had started her own "non-profit" more specifically for "Autoimmune Arthritis Diseases" such as RA, Sjogren's, at the (IFAA) - The International Foundation for Autoimmune Arthritis". She really began, along with the other advocates there taught me so much about getting into the organizations I felt were the "best fit" for what I wanted to try and accomplish. Thus the Arthritis Foundation (plus I still do Activism) for several other places.

Shortly, right after I attended my 1st "Ambassador Meeting" via the Internet and Phone, I found out that there was a possibility I COULD GO TO TELL CONGRESS MY STORY! Well, those that represented my District. The one person that did that happened to have been from my own home town, he had worked for the same company long years ago, that my Dad, Mom and I had worked for and I "knew" him, and some of his staff. In fact he has an office right here in my hometown.

So, I applied for a "Travel Grant" to go to Washington DC on March 24th, 2014. It was already probably kind of "past due" to even apply, but I did anyway. Tears of joy streamed down my face, when within a couple of weeks, I received notice I had been GRANTED A TRAVEL AWARD, for room, round trip flight, training, and such. I was almost shouting at my neighbors when I found out, telling everyone I could about getting the grant. My MOM was SO PROUD!!! SHE always SUPPORTED ME, AND BRAGGED ABOUT ME, to everyone! Mom was my "greatest fan", from my writing, to my advocacy work, to everything else I ever tried to do that was worth doing.

So, on March 24th, I flew to DC, and got to meet with Representative Joe Barton, tell my story, along with some other incredible people I met there. I cannot say enough about not only all of the Ambassadors, but the entire STAFF, are the most caring people. Laura Keivel was also such an inspiration to me from the AF, and she continues to be there for me at times,

On my last day of the Summit, I got a phone call (emergent) but at the time I did not hear my phone ringing. I was waiting to be picked up outside the Hotel, by my "Mother In Law" whom I had never met, (her son and I had been together over 10 years), plus we were going to stay, he was flying in, so we could spend time with her, and he could show me Washington DC!

Tragically, that phone call, came in about the same time my Mother in Law, walked into the Lobby to find me. It was from the Emergency Critical Care Unit in Dallas TX at Baylor Hospital, telling me my husband was in an extremely horrible car accident on the way to the airport in Dallas, to fly out to meet me! I dropped to the floor, and of course no one knew at that moment what was happening. But, a gentleman there that helped me get back to Dallas within about 6 to 8 hours, and I was at Baylor in ICU, my husband at the time, other than many other injuries, had a "broken back" and was headed for major surgery.

I shall end this piece here, but little did I know after March 26th, 2014, just how much more my life would change forevermore. Little did I know I would lose my Mom's sister, my Mom this past June, 2016 to a horrid Lewy Bodies Dementia, and that I became more ill, lost ALL OF MY TEETH TO SJOGREN'S, and the story just continues to go on. My husband went back to Seattle after mending a year here, for reasons, I feel mainly guilt, although it was NOT HIS FAULT! An 18-wheel tractor trailer literally ran over him,  and yes there is much more to that story also. Then my Pug, Tazzy, who was a Christmas Present in 2004 in Seattle, passed away within 24 hours of getting very ill. Thus "loss: had been a large portion of my life, loss of my own health, my own ways, my husband, my Dad in 2005, my Aunt and then my Uncle, and shortly thereafter my Mom.

So, I realize due to the nature of emotions tied into that fateful March 24th-March 26th, 2014, have been a mixture and blend of the good, the great, the bad, and just the plain horrid.

YET; although what happened in March 2014 WAS such a horror, being able to go to Congress, tell my story, and KNOW I HELP TO MAKE A DIFFERENCE, has been the "highlight" of my activism so far.....


(by the Way WEGO HEALTH, all of you are also an inspiration to me also) 

Monday, November 28, 2016

WEGO Health Blog 2016 November 29th Challenge - Have I checked out some others bloggers and #HAWMC Fellow bloggers -Choose a few I liked and repost to my Blog!

This is a very difficult choice to make because EVERYONE'S are GREAT! Information, giving of "self" in an unselfish way, bearing your own health burden's and life challenges for ALL to see - - - - - - - - -  



I am always so thrilled to participate and interact with ALL of the people there. ALL of you ROCK!!!

So, it is a "trying" time to make sure I give "back" to those who gave me so much, either through their own blog posts, or their comments about mine! I've learned a great deal about illnesses, about other bloggers, about how there are those that do CARE, and they "give of themselves" often "Bearing their Souls" about life, pain, chronic illnesses, being a caretaker, and the REST of what WEGO Health Helps to Teach us!

So, Here are a few of my re-posts:

Day #4 What Superpower would you like to have: Kristen's re-post form the FB Page :

Kristen WEGO - My superpower would be patience! Yes I count that as a superpower. Challenging yoga class this morning and a challenging first time working with clay this afternoon. Finding myself frustrated and pushing for perfection but remembering to have patience and to accept where I'm at 👌🏼My vase may be crap but at least I'm rockin my awesome Bipolar tee from @GabeHoward to help #Stompstigma

Day #1 on Julie Cerrone's  - FB Link -

 Her Blog Repost I liked is at:

Day #29 - "What I Wished I had known Before:

Day #4 by one her blog (re-post) Blog Name - Inflamed and Untamed!

Day #11 - Your Top Ten - From Blog "Journeying Beyond Breast Cancer" Re-Post

These are just a very few that touched me in one way or the other - I could name almost everyone I got to read, and will be reading over the next weeks, so I can really get to know so many of these great people and awesome Bloggers!!!!!! Rhia

Tuesday, November 22, 2016

Monday WEGO Health Blog Challenge for 21st of November - "Motivation Monday - A "Life slogan? What helps to make the experience so special?"

Monday, November 21,2016 WEGO BLOG CHALLENGE - "Motivation Monday" A Life Slogan that gets Me Through The days, that something are less than expected to be...

As I've always said in life, "IF you want the job done, and done well, you must dig your heels in, get your hands dirty, and stains on those "white jeans" and do that job yourself.

 My "mantra" has not changed all that much, other than the fact like this past 10 days, for 2 weeks I WAY OVERDID EVERYTHING!! Cutting down tree limbs, cleaning up my yard, re-potting plants, throwing out an old loveseat I had to literally take apart to get it out of my door, then dragging a heavy 10x 12 area rug out so I can replace it, re-arranging furniture, brought ALL of my very heavy houseplants in just before the cold got too bad for them, and I am talking about a palm 8 foot tall, my fern is about 12 foot around at least, my ginger plant is over 8 foot tall, and several more not quite as heavy but still burdensome to get into the house, after having to clean them all up, clean the pots, re-pot some, pulled one air conditioner unit out of one window, that I needed to throw away, and it was the small one. The large one is on the fritz and I have to get it out of that window, but I think my neighbor may have to help with that one...

I have TWO BROKEN WINDOW PANES, well I really have 4, these old glasses after 50 years are so brittle, but I am replacing them with plexiglass so for the most part I can do it myself, rather than have to be concerned about holding a piece of glass in place, while you try to place the push pins in, then get the glazing around it... so I am going to opt for plexiglass for now, and then worry about something else later... and I've baked some, and that is not including the running around errands, the regular house work, and my list goes on and on... thus I KNOW I did this to myself, with the assistance of Lupus.

I also know some things like hanging a ceiling fan now, and other things that require me to put my arms up and hold things up very long, I am going to have to get help with some of those, and the heavy stuff... after all of the lifting, pulling, pushing, etc... every joint, every bone, every muscle hurt, I even thought I had broken ribs it hurt so much to breathe... but ALL OF ME WAS SORE, EXTREMELY SORE, I had a horrid Lupus Migraine for days and days, the night sweats (cold ones), fever off and on.... my joints in my hands and thumbs are now so bad, my Rheumy will not believe how bad they got within 3 months or so...

But, even as my PA told me yesterday, she "understands".... she said I could "scold" you BUT, I DO THE SAME THING! I can't afford someone to cut tree limbs, and shrubs, or do lawn work, and lots of things that need to be done, she said there is just ME, and I have to do it come heck or high water... but THEN she said BEFORE MY CERVICAL SPINE IS WORSE THAT IT ALREADY IS, I'VE HURT IT TWICE AT LEAST WHEN MOM WAS SO SICK. Then I hurt my lower back here doing all of the stuff at home... to the point that NONE of my pain medications would touch it, BUT corticosteroids, are about the only thing that will get rid of this "type of pain"... it works on my other pain fine, but when it comes to "inflammatory" pain, all of the regular pain meds in the world will not get rid of it...

So, my "life's talk" to me is still the same, for the most part, "If I want it done correctly, and when I WANT IT DONE(like NOW) I must dig my heels in, hands dirty, clothes dirty, and "remember" to take it either slower, or try and get "some help" for some of this stuff that now is beyond my body's capabilities...

That is what gets me through my days, that and my two fur kids, even though sometimes they grate my last inkling of nerve I have... and knowing life goes I can get up and DO SOMETHING, OR I CAN SIT AROUND, HURT, MOAN, GROAN AND FEEL SORRY FOR MYSELF. (Which for me is NOT what I want, nor need to do.)

Friday, November 18, 2016

Throwback Thursday! WEGO BLOG #HAWMC a "phost" from the past? (Christmas Eve 2014)

WEGO HEALTH Bloggers Challenge for 2016 - 'Throwback Thursday" One of my blogs from the past and why I picked it to go back and "share" it again.

 Many of you know how "messed, mixed, and flat horrid most of my year in 2014 was. This post explains a great deal of what went on, and why 2014 had an incredible start, I got to go to Washington DC for the Arthritis Foundations Annual Summit and although I had been down with a severe Lupus Flare, I had been to our Urgent Care the Friday before I was to leave and the doctor who knew a great deal about Lupus, since he suffers from it also, gave me enough corticosteroids for a horse I think (LOL, well not quite that much but enough to make me feel like I was brand new by the morning at 4AM I left for DFW Airport, for the flight to DC!

Little did I know what would happen that last day of the Summit March 26th, 2014. A horrendous nightmare of an event, that forevermore changed my entire life. There are days it still effects me, even now. So, here is the post from then:

Since the post is pretty long, rather than try to post all of it here, I decided to just post the URL (link) to it. That was a year of hell to say the least, then 2015, was not much better... I DID get the honor of being a "Platinum Ambassador" in 2015 BUT, did not get to attend the Summit that March, for reasons why in 2014, along with other issues that happened due to that "eventful" day. 

Then, thinking I would "start new" for 2016, only to become, someone without their own caretaker, that became a "caretaker" for my own Mom, who up until January 2016, had been in pretty good health. Little did we know what awaited us the first 6 months of this year...

Monday, November 14, 2016

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....

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.

Thursday, November 10, 2016

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



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?


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.

Sunday, November 6, 2016

Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016

Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....



Dear Rhia (self),

You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.

When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.

You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.

My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.

I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.

When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".

I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.

So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.






Friday, November 4, 2016

Day 3 - of WEGO Health Blog/Writer's Challenge - A Favorite Quote and why it moves me #HAWMC

Day 3 WEGO Health Challenge - A Favorite Quote and Why it Moves Me

My "favorite" quote is actually one that comes from myself. "If YOU do NOTHING! Then "NOTHING" gets done!"

I've come to find out after many years of feeling as if I could depend on someone else to do as they said they would, or help me out when I needed help, that I was going to be either, upset, disappointed, feel as if no one cared, have my feelings hurt, and after living with all of those "harsh feelings and emotions" what I "needed done" never got done. The only thing that came out of it, is me feeling lousy. 

So, I am truly a stubborn person when it comes to "asking" anyone for help. Not that I feel someone else can't do it just as well as I can. I am not "narcissistic" per se'. I have been through relationships, whether serious or friends, at work, at home, business, serious, or not serious, the only way, I know for sure, something that truly needs to get finished, and have the job done, is if I do it, and try to not "depend" on anyone else to help get it done. 

Actually, I've been going through these circumstances now for months. My Mom has always depended upon me. Bless her heart, after my Dad passed away in 2005, I, being an only child had to move back to Texas from Seattle, because she could not even put gas in her own car. Much less figure out bills, investments and all that needed to be taken care of. There were times over the past 11 years that "someone else" would offer to do this, that or the other" to help her or us out. Then when it came that time to do whatever it was, guess what? I was left with ME having to take responsibility. That has been really my entire life's story. If I want it done, and to know it was taken care of, I must just go ahead and do it. My Mom after being seriously ill only the first 6 months of this year with what we feel was "Lewy Bodies Dementia" passed away on June 9th 2016. I knew even though at the time I needed surgeries that had been put off, that I sprained both ankles severely the day of her visitation. I was in the middle of a horrible Lupus flare. Yet, I knew I had no choice but to make the arrangements and get things taken care of. No one else, even though some offered would get down to the "brass tacks" as the saying goes and get it done.

So, that was and is still my life. If I want something done or need it done, then my saying always holds true, "IF you do NOTHING, then "NOTHING" gets done!"

Day 1 - #HAWMC - WEGO- Health 30 Day Blog Challenge - What drives us to BLOG!? (running a bit behind)

WEGO Health Blog/Writer's Challenge Day 1 #HAWMC

I've been a "driven" writer since I was abut 13 years old. I began writing poetry back then, and a few short stories. I was even the "editorial" writer for our High School Newspaper. I took on a few tough subjects, from "Holes in our student parking area", to giving our students more of a challenge when it came to subject matter and getting us ready for what we would face in the real world; after high school and college.

I continued to write in "handwritten" form, before computers. I have notebook after notebook filled with my writing. I have most of them still with me, and have been able to put much of the material on the computer.

At the age of 14, I had a neighbor who was a RN at our local hospital. I seemed to "soak up" everything that was "medical" in nature. I volunteered as a "Candy Volunteer, I guess then called a "striper" and I stood beside her every chance I had spending all of my free hours learning about the medical world. From watching them deliver babies, to taking care of those babies and Moms, and learning at that time how to "pack instrument" packs, because back then most instruments were not "disposable". We had certain instruments for certain surgeries that had to be cleaned, disinfected, wrapped together, then put in an "autoclave" that sterilized them further to be used in surgeries.

From there, my mind was made up, I would be in the medical field. Of course things change, and I got out of high school early, wanted to go to work, and married young. We had my son 2 years later, but by the time I was about 22, I knew that is not what I wanted for my life. I went on to divorce my 1st husband, and then was a single Mom, with bills to pay, and went to work at a bank in Dallas. Still I was restless because I was not doing what I felt was my calling, my heart's work, and what I was supposed to be doing in my time here. I left the bank, remarried a couple of years later, got some college under my belt, and went to work in a hospital, but in the business office.

Those 6 years there made me know even more that I wanted to find a way to be in the medical field, more hands on, and not behind a desk collecting money from sick people.
Yet, again, even after having an offer from the hospital for them to fully pay for me to go to college and get my LVN degree, at that time, I had two younger kids in school, and was unable to go to school full time, and support my family also. Oddly, enough, I went ahead and took the "entrance exam" to get into the nursing program and passed it as #1! That made it even more difficult for me to pass up the opportunity. I not only had the drive, I had the offer to pay for my classes, then work for that hospital for a year to "pay back" a portion of my college. Then I could have went any direction I pleased. Yet, family came first, and with a heavy heart I declined that opportunity.

I was friends with a woman that was the head of nursing there, and there were days she was almost unable to walk. Her feet would hurt so badly, she could barely stand on them. I found out she had Rheumatoid Arthritis. That and another young woman that worked in the hospital pharmacy, had a type of "stomach issue" autoimmune in nature, that there was little known about, much less on how to treat it, and give her the life back she wanted.

All those years I continued to fill notebook after notebook of my writing and poetry. That was the one "steady" in my life, my writing. I did go to college, and took accounting classes and business classes, and almost had my degree in business. I was struck with Migraines, that were horrific. Over the years they would make me so ill, I would miss work for days at a time. I never "hid" that I had the headaches, but I could not predict when and how long they would come on and last. In fact, I lost several jobs either having to resign jobs, due to missing so much work because of the headaches, and other health issues, including needing surgery on several joints. I had painful problems with my knees, shoulders, hands, and elbows. Again, missing work for surgeries on painful joints, in my 30's that the doctors could not really explain.

I had went to a "pain specialist" long before they were really heard about, mainly to see if he could help the migraines. I had injections into the occiptal nerves in my neck, was hospitalized, had every test available, yet no doctor could put the pieces together as to what was "wrong" with me.

At 40 years old I was an avid exerciser, daily, I ate only healthy foods, watched every pound of my weight, and did everything "right" for my health. Yet on January 8th 2001, I suffered a heart attack.

After that, doctors began "speculating" what was medically wrong, and a huge amount of "stress" was a portion of it. My 2nd marriage although lasted 15 years, put me in a horrific "trauma" day after day, and that stress my doctors seemed to feel was what partially caused my MI at such an early age.

I began to have tests, be able to see better and more advanced physicians, and around the age of 45 I had a young PCP, who finally put the pieces together, along with the proper blood work and finally was open minded enough, to "listen" to me. He found out that I had some "type of autoimmune issue"(s). He sent me directly to a Rheumatologist, who ran more tests, and determined I had MCTD, or possibly Lupus, RA, Sjogrens' & Raynauds.

I had already discovered a whole new era in "writing". Online communities, of people such as I, and that my "writing" could really be helpful through these communities, through my own "blogging" (at the time I really did not even understand what a blog was) and that even though I never was able to go into the medical field to help people on a plane such as a nurse, doctor, or in research. I COULD bring my story as well as a great deal of information to so many others such as myself, that were severely in need of answers, of the questions to ask their doctors, of information on new medications, and through other telling them their own stories.

Thus, my writing and medical "knowledge" finally came together about 10 years ago, and I began to "help" others through my own frustrations and information about the diseases they had been told they had, but were frightened to even ask their physicians for more information.

So, out of my own Chronic Pain, many surgeries, dealing with several autoimmune illnesses, tests and knowledge, was born my own blog, and my own way of helping those who are in such need for someone "listening" and truly understanding their problems.

Thursday, April 30, 2015

WEGO Writer's Challenge! "You have made it!!!! 30 days and 30 posts! #HAWMC

Wow! What a fast month this has been. I realize I post on my blog daily most everyday of my life. Unless I am sick, having surgery, or out with myself or family at the doctor's I keep my blog very current. Often times more than once or twice in a day. Depending on what I am finding online, there maybe several posts in a days time.

This has been a wonderful and thrilling April 2015! thank you WEGO Health for the chance to be in this "writer's challenge" and I hope to be able to do it "annually" for as long as you offer it. The prompts were fantastic and it really gave me a much broader sense of what to write about. Sometimes as an author and writer, and blogger, I feel I get "stuck" saying the same things over and over again.

So, having another party give me the "prompts" helped to open my mind and heart up to write about some things I may not have thought about. So, I commend all of you for the hard work, for the "tweets" for all of the other writers, bloggers, and authors out there that I have gotten to know over this past month. That is another awesome thing about the Writer's Challenge. I've been able to "meet" new people, and see what they say about some of their own battles with all types of health problems. I thoroughly have enjoyed all of what I've read and I have learned so much from each of you. That in itself is such a wonderful blessing.

Oddly enough, now that we have become an "online" world, where "everything" can be known within a few short clicks on the keyboard, makes our world seem to be a much smaller place than it used to be. So, I may make friends with someone right here in the North Texas area, or maybe someone in Australia. I love being able to know people from other states, and countries. To see how their health care is, how far ahead some are from us, especially the UK, when it comes to Autoimmune Illnesses. They seem to be several steps above us, with new medications, research, clinical trials and more.

It is difficult to pick any one thing about the "prompts" or the entire Writer's Challenge that I could say I was not that crazy about. I felt that you did an incredible job of really making us dig deeper, and really think about different things when it comes to our own health issues.

I loved ALL of the prompts. Of course there were a few I liked more than others. I have to say the "acronym" was one of the biggest challenges. I liked it, but it was one that I guess may have been down on the scale of being a favorite. Yet, I learned things from it also, so it maybe a "less favorite" but I did partially enjoy the challenge.

The product review for me is somewhat a difficult one. I feel that I may not really understand exactly what you guys and gals were looking for. I tend to write and blog more about medications, research, new clinical trials, and so on. So, it took me awhile to decide whether the "favorite" products should be something more on the "medicinal" side, like prescriptions, or more like things we buy over and beyond the physicians, medications and so forth. For instance what I use on my mouth, corners of my mouth, my skin due to the Lupus, discolorations and so forth. Some I am sure have other types of devices that may use, such as a "zipper pull" or something to help get things off of tall shelves, and so forth. I am sure many have types of gels they use for sore muscles and so forth. So, I tend to go into the "mini implanted titanium rods" that hold my dentures on the bottom very tight. After losing all of my teeth within a year to Sjogren's, those have been lifesavers for me.

I would love to see even more types of "prompts" possibly on a more personal level. You already have given us quite a number of those that required us to open up more about our battles with health problems. But, I could see maybe a prompt next year that asks us to open up and tell some of the even more hardships, and things we go through that we may not write or speak about much.

Other than that, hats off to everyone! From all of the gang, of gal and guys at WEGO Health, to everyone who participated in the Writer's Challenge for this year, I commend all on their awesome posts, and what they said and chose to say that truly gave me new insight to myself and other illnesses, medications and how many of us are so "near" one another with our stories.

I loved many of the prompts. The "word cloud" was new to me and I really enjoyed it. The "Hindsight is 20/20" I truly liked. Stress Awareness, "telling someone "off" when they hurt your feelings", and the "travel" prompt was great also. It is difficult to pick one over the other because all of them were enjoyable. 

 I will be so excited to see what you "prompt" us with for next year! "If I am here, able, and still kicking, I look forward to participating in April 2016!!

I do hope and pray that by the time we do this again in 2016, my 3rd book will be completely written and published!!! By the way, that is another thing doing this has helped me with... material to use in my book. It also has given me some very good ideas about what to say, how to say it, and gotten me in the habit of the daily writing. I hope to take that even further, so I can finally finish my 3rd book (my own autobiographical journey) through the madness of chronic illness, autoimmune diseases, chronic pain, and all in between!

Again, I am just elated, yet a bit sad that it is over!


Again WEGO Health, I've had a blast with these this month! I appreciate ALL everyone does for us as patients! You guys and gals rock!  Rhia

Sunday, April 26, 2015

Oh MY!!! I almost missed it!!! I had my days Mixed up.... #HAWMC - WEGO Health Writer's Challenge

This has not and never will be an easy thing to do. "We" and I am speaking us that are chronically ill and/or having Chronic Pain. All too often others that mean well, can sometimes really say or do some very hurtful things to us. Some, they may mean it to be that way. Yet, often family and friends, really don't want to make us feel badly, yet they do.

I know my Mom will come up with some "hair brained" idea from "television". She will "partially hear or see" something that she thinks may just be the answer to our prayers for me to "be well". A I have tried to tell her hundreds of times, those "gimmicks" are just that. They are trying to get your money, and the majority of the time, whatever it is, would not work.

So, I have gotten to the place, that rather than "appease" her or anyone with these solutions, I inindate them with the "truth". I have taken the Arthritis Magazines to her. Health magazines that cover what is really going on. I also print things from online. I have taken many examples of the "truth" behind my illnesses, my pain, and why I do or don't do some things. What she and others do is try to tell me "what I should or should not do"... I guess that bothers me more than anything.

NO, maybe I should not have been on the chair today putting up a new mini blind. BUT, if I don't, who will? There is NO ONE I can call at the drop of a hat, that can come over and resolve my daily house stuff, that I have to do. My coffee pot went out this morning. I also needed a different size mini blind. Then I saw the one in the next window was also broken, thus I needed two of them. Did I really "feel" like going back to "Wally World" this morning to get those things? No, I wanted to be here, home and writing. But, once I saw that I needed those, plus the curtains in my bedroom needed laundering, so down they come, and into the washer and dryer. I realize that there are things I can't do. I know about how "far" I can push "me" before I am doing something "dangerous". I have osteoporosis, and it is in the "severe" category. So, climbing on a chair hanging blinds, and getting curtains down to launder, then putting them back up is not the smartest thing in the world to do. But, again I HAVE TO! It is up to me. This is our home, Jim is still not able to do much of any of that at all, whatsoever. Thus, I do what I can.

So, when I go over to someone's house, or see them in the store, and they ask me what I've been doing. I tell them. I know one day a lady I know caught me in a "not so great mood" at a store... She began going on and on, about her toe was hurting, and she was upset because her nail lady could not get to her, and she didn't know what she was going to wear out dancing that night. So, I looked right at her and said, "Well, at least YOU CAN HAVE YOUR NAILS DONE, and you can I am so sure color your hair today. Besides run over to Beall's, they are having a sale. Maybe you can find a dress you like, or an outfit. Then I told her, at least you get to go out, dancing, to dinner, with friends on the weekends. I sit at home, ill many times, and can't even go to dinner on my wedding anniversary, the 10th one at that. She kind of backed up and looked at me, and then said, "Well, I guess I didn't realize that you and your husband had that many health issues?" Well, she didn't know because she was too busy running her mouth about her world, her life, her job, her kids, blah blah blah... and so on, and never once asked about my life.

So, when I get "that look" using my disabled parking sign, or I ask someone to help me with my groceries to the car, I just stare back and should say, yes I AM ILL - YOU may NOT see it.... yet it is there... I am to the place, if I go into the store, sometimes I don't have makeup on anymore. Maybe I am not dressed to the "nine's" at times. By the time I do what I need to do at home, then have to shower, dry my hair and dress, many of my "spoons" for the day are used up and I need another handful just to make it through the market, and the pharmacy.

So, people that DON'T KNOW, rather than stare, ask me. My life is an open book. I will tell you all about my Lupus, RA, Sjogren's, knee replacements, shoulder replacement, losing ALL of my teeth this past year and have dentures due to Sjogren's. Ask me about the fatigue, the cold sweats at times, the times that I so wished I could just sit down in the middle of the floor and CRY until either the pain stops OR I can't cry any longer..

Before you "cast" a stone.. try to make sure the target is what you think it is. So, yes, if after a round of "high dose 14 day Prednisone", I have a couple of pounds, I can see, so I know others do too. It may take me a month to get off those couple of pounds, but they will come off.

And if I "can't" go out to dinner, or out shopping, or if I decide there is no way, I can do laundry today, then know when I can, I do, and always will.

#HAWMC WEGO Health's Writer's Challenge "How to "Smile" & Try and Feel Better Even Though Things are NOT as They Seem! How to Handle a "Bad Day"

I will attest, WEGO Health and the bunch, you have came up this entire month with some incredible "prompts"!

This is truly a great one also. 5 Tips to overcome" a Bad Day"!

I would venture to say (I guess at the moment I speak for myself), having chronic illnesses and Chronic Pain is almost something "negative" we live with daily. Of course some days are worse than others. We have our "memorable days". Those that we wished we could bottle up, and be able to open and have a sense of remembering them in touch, sight, smell, feel and thought! Of course all of us have those great memories. The idea of truly being able to capture them "hook, line and sinker" as the old saying goes could make them even more capable of giving over to the times when things feel like you are on top of the ever shaking mountain, and could conquer the world.

For me, I usually know very quickly, if I am going to have "one of those days." When I arise from bed, and everything hurts, I realize I have 3 or 4 doctors appointments, things my Mom needs done in that next few days, it is not sunny outside, OR it is HUMID and MUGGY; which brings on even more pain, that is when I feel like crawling under my bed, with my "granny blanket" as I call my favorite blanket with the silk on the edges, and hide for at least 24 hours, maybe more.

So, when things start off like that, I head to Facebook first, to find something "positive", "
funny, strange, thoughtful or whatever some friends have posted, that make me smile because they just have that ability. For instance, I have a dear friend who has a very busy
Fibromyalgia group. She seems to always know, when I need something to smile about. So, often times when it feels like I am "drenched from the fog of a lousy day" she has sent a "bundle of virtual flowers" and a small note to say "I totally get it and I understand". So, my first tip for "one of those days" is to "look" for something positive. If you have a FB page with friends who tend to find either positive things, pretty cards, or something funny to post, go and see if they have posted something. Usually if you scroll through the new posts, you will find one that just "fits" to make things feel a bit better. My next thing is that rather than allow all of that "garbage" to float around in my mind, I write down a list of what has to be done! Whether it is for just that one day, or for the next few very busy ones ahead, by writing them down on a list (I suggest literal paper and your favorite pen) rather than typing them out, making that list helps to put things into perspective. I feel I can better handle it all. I kind of purged it out of my thoughts by writing it on paper with my favorite pen (by the way, no one touches my favorite pen)! So, my 2nd way to make it a bit better is to write a list of what needs to be done, so you can kind of rid your mind of all of the stuff that is floating around almost eating at you.

My next thing I try to do, is take a look at the local weather. As silly as that sounds, once I have down a list of what needs to be done etc, then I want to know what to expect if I am having to go out and have things to take care of outside the house, the weather sometimes really makes a difference. Right now it is "thunderstorm, hail, high wind and possible tornado" time in Texas. So, if there is a 90 percent chance of thunderstorms, that are probably involving hail and high winds, then I decide what things I can do here at home done, and avoid going out in terrible weather. I know the day is only going to be worse, if I am fearing my new vehicle being hailed on, or going somewhere and having blinding, drenching rain, lightening and thunder all around. So, my 3rd thing to make for a better day is to KNOW what to expect weather wise. The weather makes such a difference "physically speaking" also. If I am already hurting, stiff, and feel lousy, then I see the weather has a high humidity, a barometric pressure that is nuts one way or the other, then I can "expect" the pain and stiffness, and "blame it on the weather" or at least partially know for sure, it is NOT helping.

Writing seems to be my way of truly ridding myself of the gunk in life that causes me great grief. So, my 4th idea is usually to write in my blog about all that is really eating at me, or post on Facebook, and ask my friends to keep me in their thoughts that day. Sometimes I just write and not post it. I hold onto it for a bit, to see if I really want to just rain pain down on everyone else. At times a post where I am griping, whining, fussing, and just letting it all out, is perfect for my Facebook page. When I can tell that others are also having a crappy day, pain wise or whatever, empathy goes a long way. Now, when I say empathy, I mean those people that REALLY understand what you are going through. Not the "acquaintances" that don't get it, because they are either not chronically ill, or have chronic pain. But, those friends who are often in the trenches of hell in illness, right along beside you. Or if you see there are other dear friends that are really having one of those days also, then I try and send a post to help lift them up. That empathy, can work both ways. If you are able to put aside your stuff for a bit, and tell someone else you totally understand, and you wished you could fix it, make it go away, or be better you would. Sending a little picture of something cute, or pretty, flowers, kids, beautiful scenery, anything that is positive and just can cut through that bad stuff for a moment, always helps to make me see, "I am NOT the only one having a heck of a day". So, writing and then also uplifting someone else can help me to put my own stuff into a better perspective.

Sometimes for me, since I love to bake, if things are really horrible, and I want to jump off the Earth, I go and bake something wonderful. Getting everything out of my face and out of my mind, and baking does that for me, can turn a bad day into "okay, I can deal". Then there are times, that I will just think to myself, pain or not, fatigue or not, do something constructive. I in fact have been having one of "those days" now for about 2 WEEKS! So, yesterday, as bad as I felt, I cleaned my house. I "swiffered" my hardwood floors, then I mopped them with my hardwood floor cleaner that smells like lemons. I got out my duster, sprayed some lemon dusting spray" on it, and went over pictures on the wall, around base boards, under the bed where all of those dust bunnies hide, and over some of my furniture etc. I am not talking a huge spring clean, but one where you can do just enough, that gives you a sense of you accomplished something in spite of the junk, and take a smell of just how "clean" and fresh your home smells. That lemon smell, or any type of citrus, just makes everything to me smell like a fresh spring and summer day. Plus, I could visibly "see" that my effort paid off. Things looked neater, cleaner, and I moved around stiffness, pain and all, which helped to take my mind off the pain, the stiffness and I got some exercise with it also.

Those are 5 that come to mind at first. Sometimes I just have to get out, and go walk. I may spend a half hour trapesing up and down my long driveway, ranting and raving to myself, about how life had just wronged me that day. Again, any way I can "purge" my mind of "the stuff the binds me" helps to turn a bad outlook around. Some days I take a drive to where my Dad is buried. He has been gone now 10 years, which seems impossible, but I go out there, and in all of the quiet, peace, the sea of colors with flowers everywhere, and I can quietly "talk" to Dad, there comes some peace of mind.  I may take new flowers to put out on his grave and my Grandparents. I enjoy doing that, so it helps to turn the day around also. When things are just ALL out of sorts, and I am dropping stuff, spilling, stuff, hurting badly, and everything I touch seems to turn into a huge mess, I give up, go set on the sofa with my two pups, one on each side, and chill to watch a movie. Having them beside me, and getting my thoughts off of all of the bad stuff, also puts me in a place of, "Okay now I can handle some of this stuff". Maybe I have some kind of small treat. A cookie I love, or a bite or two of a cake, pie, or something I've baked. Others I may go outside, hopefully with my gardening gloves and literally just pull the weeds, and stray grass from around my flowers. That helps to take my mind off of things.

The very best thing I can do, when it's possible, it try and just get completely away for a day or overnight. If I've had some really busy weeks, things have just been too hectic, too full of illness, doctors, medications, fighting with insurance, and there seems to be no end, then I get my Mom, and we go for at least a day visit, usually to the Casino in Oklahoma. We usually have "complimentary" rooms for a night or two. So, if time permits an overnight stay. As I had said before, being able to just totally get out of the house, of out of town, and away from all of the stuff that can just put you into overload, as soon as I pull into that Casino parking lot, and enter the doors, everything else seems so small in comparison. We are not much as far as gamblers, and usually play the "penny" slots, and my Mom likes the 25 cent slots. But, it is the people, we watch others and see how excited they are, or when you here the cheer from one of the tables, and know someone just did well, or just to relax and eat at one of their great eating places, and walk, walk and walk. The one we go to usually is now once again I believe considered the "largest casino in the world". I can attest to the fact, that a lap or two around the entire casino area in itself, not including the three huge hotels, and then the smaller one they call "The Inn", can give you all the exercise you need for a day or so. Plus there are no clocks, no windows, and with all of the sounds, lights, people, music and noises, everything else pales in comparison. I leave there still kind of in a "trance" almost. Even though it is only a day or one overnight trip, it can smooth the "edges" off of life's rigid times.

It will be interesting to read how others rid themselves of a bad day! I know WEGO Health keeps me busy, and they help to take my mind off of the "bad days" also.

Saturday, April 25, 2015

Saturday April 25th, Wego Writers Challenge 2015 - "Wordie" #HAWMC

This was really cool!!!! I enjoyed doing it. Wow, I added quite a few words, but I can see making one huge very quickly with all of the primary words from a blog!

Friday, April 24, 2015

"Fitness Friday" - WEGO Health Writer's Challenge for April 24th, 2015

Oddly enough here I sit writing when I actually am supposed to be out walking with my spouse! Due to all of his health issues, pain and so forth from the severe accident a year ago last month, it has taken him a very long time, well a year, to get to the place he feels he CAN somewhat take a walk. And the thing is before his accident I walked daily, 7 days a week, at least a mile. I walked my drive way back and forth every morning, rain, shine, just not in the cold... joints and bones HATE the cold weather.

Now, I had for various reasons almost stopped my "daily routine" of exercise, walking, and riding an elliptical when the weather does not allow me outside... Between all of my own heath issues, the long drawn out process (a year also, really more) to FINALLY have MY DENTURES and THE LOWER ONES ARE REALLY ANCHORED down NOW!!! What a miracle.  I thought that day may never come. In fact, I was just in my dentists office today. I had some issues with some of the material he had used when making the little places in the denture fit over the little mini implanted posts. So, I went in and he fixed that for me...

He did say all looks very well. That he could see I was taking care of the posts inside my jawbone, along with the dentures. So, he was so pleased with that. Gosh, I should be ELATED! After over $12,000.00 worth of work, plus blood, sweat and some tears They should be make out of gold, platinum and "precious stones"... LOL! I guess that would weigh me down so much, I would not be able to open my mouth, OR worse I would NEVER be able to shut it!!! As if I don't talk enough to drive a preacher to drink, Lord knows I don't need anything to make me keep my mouth open anymore than it already is.

So, my own exercise routine kind of went astray for a bit. I say that but in a way, I have been almost getting MORE exercise daily between shopping, cleaning, cooking, laundry, vacuuming, sweeping, dusting, and as that list continues on and on.... Days like when I vacuum then "shampoo" my carpets. They are not wall to wall, we have hardwood floors, but our huge area rugs in three of our rooms take a great deal of elbow grease to clean them. Well, I like to go over them twice, if possible. But, the last two times I confess I only made it once on them.

Anyway, I consider things like laundry, making the bed, chasing after our dogs, and cleaning up after them every day, all of my pulling weeds, tending to about 80 houseplants, that now need even more care because they are outside for the Spring and Summer. Still that means everyday watering... thus that is a workout in itself.

I will say since my husband began his regime of daily walking. He goes out about 4 to 5 times daily, and makes several laps around the driveway. I usually go out and do the same with him. Plus, I am beginning my own walking habit daily again since this weather is beginning to be warmer, yet not too warm.

I do some stretching exercises, and wished there were many more things I could do, like I used to be able to. As with many types of chronic illnesses, especially autoimmune illnesses that tend to strike you in the joints pretty often, there are many things I could do, yet no longer are feasible. I was never very "Athletic". But, about the time I turned 21, I wanted to be in better health, look better, and be able to wear "cute" clothes back then. I had a tiny bit of an issue with my weight as a teenager. I was never "obese", but I had about 20 pounds on me, right after my son was born. I was determined to shed ALL of the weight (which was about 20 pounds) that I had gained in the pregnancy. Then I also wanted to drop another 10 pounds or a bit more, in order to just look good. Not too thin, but to get to where I felt "good" about my own self, when I looked in the mirror. And that became a way of life for me. I walked at least 5 miles a day, took aerobics classes a couple times a week. Back then I did all of the lawn work, mowing, and everything in between. That was in addition to a full time job, two kids, and I at that time was going to college at night to hope to have at least an Associates Degree. Anyway, up until 2007 when my joints that were already giving me problems began to get so worn and I was in so much pain, I finally had to have both knees replaces, along with shoulder,
and other joint issues, that kept me from snow skiing, now I am really not supposed to mow, but I sure have been thinking about trying lately. Also at the time I was walking so much, and watched every bite of food that went into body. They used to tell the waiter or waitress in restaurant, to bring me a "head of lettuce" and a bottle of fat free Ranch Dressing and all would be fine!

So, my main exercise program now is to do my walking daily. Then I also take my chores and errands, and when possible I spread them out, so that every day I have something I could be doing that requires a bit more work. Whether that be the laundry, or vacuuming, shampooing carpets. I have LOTS of weed pulling outside to do now. Along with caring for all of my other plants and flowers  I also try to make my way around the market, or a big store like "Wally world" almost a "workout". By making sure I hit many isles, and try to make the most out of all of those steps too.

One of the "largest" work outs I get, unfortunately, I don't get to go that much is walking around the biggest Casino's in the world - the Winstar, in Oklahoma. Talk about getting your miles in. If I lived closer, I would just go there several times a week, just to walk and get so much exercise. I wouldn't even gamble, it would be just the walking all over that probably estimating 5 miles from one end all the way to the other.

I wished I could say I had this fabulous gym that I went to, and done Pilates each week and so forth. But, I must stick with my "fast paced walking" along with all of my daily chores and errands as my "exercise" to stay fit.

As it stands, between my same old walking, and housework, yard work errands, this is my "method of madness" when it comes to exercise

Tuesday, April 21, 2015

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others. 

Saturday, April 18, 2015

"A Tagline" for my patient experience! WEGO Health Wtiters Challengs April 17, 2015! #HAWMC

My very first thought is exactly what the "title" of my upcoming book is:

"It's Not ME! It's The Disease    "Stupid"!

Well, the first thought was to add the word for description   "Stupid" at the very end. Of course I surely want people to read my book, so the very last thing I would want to do is offend someone with the title.

Of course, everyone that totally "gets" the brain fog, the lethargic fatigue, the times when you are just too ill to put makeup on to go to the market, and all of the other "times" that come with these insidiously mostly invisible diseases.

This is due to the fact, that we have SO MANY that do NOT understand any type of what we call "invisible" illnesses. 

There are times that either "brain fog" causes me not to be able... to probably makes sense to some, yet I feel they just don't "get it!"

Sometimes I would love to wear something around my neck that says "I TRULY AM NOT WELL!! Just because I may "look okay" and run out to the store, yet at home I look like hell! And there are days I DO park in the handicapped sign zone, and sometimes I don't. Yet, I have those that "stare" at me, as soon as I am getting out of my car. They think if I am not on crutches, a walker, cane, or almost crawling into the market, then why would I have that sign?

When I am upset, often it is due to the pain, physical, mental and emotional. So, those that don't "know" me, probably due to NOT listening or seeing what they should, they are mad because I don't go out a certain time, or they wonder why I can't mow my yard.

There are all kinds of things that go into what we call "Invisible Illnesses and Pain". There are days I am in horrendous pain, yet something may have to get done, so yes I go out. Just because I am out, don't think I am "better".... with anyone you know, that has illnesses such as Lupus, Sjogren's, RA, MS, FM, Chronic other back disorders, migraines, chronic pain.... there are MANY of us that walk thru life, and MANY people out there that don't "see" it, yet even with the "invisible" there are symptoms and signs to watch out for.

I now have to make lists, to remember my lists, so I don't forget my list! One day I maybe hand washing my car, the next I maybe on the sofa unable to move. Or Worse, one moment I can "appear" well, and within hours be so severely ill, that I have to go to the Emergency Room.

So, if there was a "tag line" that I could wear, use, put it on my door, or in my car, would be   - "It's NOT ME!  It's the DISEASE!!   - maybe or maybe not with the "stupid"

Also, one other that truly resonates with me is::

  "Life's Too Short! Eat Dessert FIRST!



WEGO HEALTH Writer's Challenge for April 2015!  "Your Tagline"...