Showing posts with label Writers Challenge. Show all posts
Showing posts with label Writers Challenge. Show all posts

Friday, May 22, 2015

WOW!!!! Talk about OVERWHELMING!!!!!

I wanted to reach out to all of you that come and read on my blog. I realize that I was not getting it "out there" like I needed to.

Then between becoming a voice, advocate, an Ambassador, A Platinum Ambassador, Activist, and volunteer, I began to be able to have a better audience.

I have several to thank for this but I will say THANKS ALL OF YOU!!!

Right now I have had MORE page views than any other time of this blog... and I have had 335 so far today!!!!!! 

That is just totally mind boggling!!!

I am in support of a great deal of Organizations who are moving forward to make life different in good ways for so many chronically ill, chronic pain patients, autoimmune illnesses, arthritic illnesses... and I know being a "part" of those has helped me "round my field" of my "audience"....

I feel I should shout out to a few, but I hope I don't leave anyone out...

My heart felt thanks and more to...

The Arthritis Foundation

WEGO Health

Cure Click (a part of WEGO)

WEGO "Health Hero's"

International Autoimmune Arthritis Foundation

The Pain Foundation

The Sjogren's Foundation

The Lupus Foundation

Lupus Research Institute


Power of Pain Foundation

Alliance for Lupus Research

and the list goes on and on... I probably need to update the list on my blog right now.... to ALL of you... thank you for your believing in me, for listening when things really suck, for "celebrating the good things", for showing me new ways, and a new day when it comes to living with some of the horrid diseases and illnesses.... Without all of you, all of THIS would not be possible!!!

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"...

What are 3 Things I am so looking forward to doing this Summer! WEGO Writers Challenge - #HAWMC April 18th, 2015

First and foremost, wearing shorts, sandals and cute Short Sleeved Shirts and Blouses! That may sound silly, but after this cold weather, with always jeans, long sleeved shirts, boots, socks, coats, and so on, I am so ready to NOT to have to put all of those on for a while. Plus I have a few new Summer tops I have bought, so I am ready to take those for a "spin"!

The 2nd activity that really seems to help me physically, mentally and emotionally is being able to get out and walk every day. That becomes my main priority and a great warm weather habit for me. So, I've already been out and about doing some of that, but with the hips and back hurting so badly, I've not been able to do as much as I want. Hopefully after the Transforminal Epidural Steroid Injection into my L-5 space vertebra, and then both hips getting injected next week, that will put me back into the physical goodness I need in order to really get out there and pound the pavement, or usually laps around a local park or my own driveway also!

I love having lots of flowers, plants, trees, and I bring almost ALL of my "indoor plants" outside for the Summer. I can usually take them out as soon as we know there will be no more surprise freezes. Then they can bask in the Summer warmth and sunshine, up until sometimes September. It depends on when our cooler weather hits, but they LOVE being outside on my front porch. Now I am talking about 70 plants or MORE that I have in my house in the winter, then they all but a few go outside in the spring and summer!!! I always giggle when I see the little tags that "NASA" puts on houseplants now when you buy them. It tells you how many "plants" per square feet in your home is best for the air. Believe me, my house is tiny, so I have way MORE than enough to "clear" the air in my home. I get bummed because there are many things that I used to love to do outside, that due to the Lupus, RA, joint replacements, Sjogren's and other health problems, my ability to do a great deal of pushing a lawn mower, doing the weed eating, bending too much, even raking, hoeing, and so much I loved to do, now is no longer feasible or advisable by my physicians. But, I can certainly do other things that are not as strenueos to the body as others.

A third thing, that I LOVE to do is put my Hummingbird Feeders out, and we both love to "bird watch" all Summer long! We have SO MANY different types of birds, and we have watched them and know so many of their "habits", why they do things a certain way, and really have an awesome time all spring, summer and into fall watching the birds. Of course the Bluejay? is the Texas "bird". But, we have loads of red birds, wrens of different kinds, finches, woodpeckers, mockingbirds, doves, black birds, and Purple Martins. There are more, but of course I can't name all. We have one pair of very "yellow" birds. They come in every year at the same time. They stay together, and usually only nest in a very thick "cedar" tree across the street. In fact, it is so "sticky" with sap, plus it has such pointed and scratchy leaves, that nothing wants to go into it, but them. I think they use that particular tree because cats, not even other birds will mess them there. We think they are a type of finch, but we find it odd that there seems to be only one pair, that come back each year. So, bird watching, we now look for the nests, and have found several nests that we've watched the little ones hatch, and how the "parents" train them and get them out of the nest within weeks. It is amazing.

I like to be able to "open up" my house and have the fresh smell of green grass just mowed, hear the birds, and just enjoy all of nature that I can soak up this time of year. I am still very much a "people" watcher, so I enjoy just watching people and see what they maybe buying or wearing this time of year. It is very interesting to see the things that others buy, and then "guess" as to watch they maybe doing or where they maybe going. When you see all of the ice chests, chips, charcoal, buns, cokes, beer and so forth, usually a picnic, a visit to one of our lakes in Texas, or on a vacation with their family.

This is also the time of the year, that I want to "rid and shed" my old self, and not just be able to put on summer clothes, but to take an "inventory" over my own home. I like to do away with things that I realize I have not used in a long time, or know for a fact just need to be done away with. As I have gotten a bit older, and as time has gone by with the chronic illnesses, pain, age part that I feel I am no longer able to take care of, like lots of knick-nacks around the house, some old clothes that we feel we just don't want to let go of, but to do an "inventory" of my home, and my life. Then I feel it is time to "spring/summer clean" out my closets, rest of the house; along with some of the "cobwebs in my mind", and from my body! Even though we always have that time of "closure" and "renewal" at the first of every New Year, to me spring and summer are also a time for renewal, to take out what we feel is "weighing" us down, and lighten up the load in our homes, minds and bodies.

I know that as I mentioned above, there are many things I used to love to do inside my home and outside, that I can no longer do, because of my chronic illnesses, joint issues, and so forth. But, I DO have MANY things I CAN still do, to take stock and move forward!

So, there are MANY things I love to do this time of year! I have to "pick and choose" now due to illnesses, and chronic pain. But, I still try my very best not to miss out on what I love the most, as I've written about above!

Happy Summer to ALL!!!

Sunday, April 12, 2015

#HAWMC - "A Day of Rest" Writers Challenge for Sunday 12, 2015

Good question actually! I say that because I am not sure how I honestly "recharge". In fact sometimes it feels like hours, days, weeks, months, and possibly longer before there comes a "day" or a bit of time to be able to not have either health issues, doctor appointments, medications to be filled, procedures to be done... there are sometimes what seems like weeks of constantly running around about this, that or the other when you have chronic health problems, like Lupus, RA, Sjogren's, Heart Issues an so forth. Then I deal with my husbands issues after the accident a year ago, and same thing. His are mostly related to the accident, but he still has to be seen by doctors, take certain medications, and has issues about health of his own we must battle.

I also must for the most part, take care of my Mom too. She will be 80 years old in August. That totally seems impossible. Yet, I can tell over this past 18 months, that she is much more "feeble", "forgetful", almost "frightened" over everything. For example, then I will move on, she desperately needed a new television. She was still watching an old analog TV, with one of those "converter" boxes from an outside old antenna that had been up there probably at least 50 years or more. So, when that "converter box" bit the dust so to speak two weeks ago, I explained it was a waste of money to put into a converter box, when the television could go at any moment. So, I did the research, found a HDTV that was the size she needed and a new inside digital antenna that should bring in enough channels for her. In fact she has more channels now than with the old one. I get it set up, get everything programmed in. She only now has to deal with ONE remote. And it was simple. The on/off button - red. The up/down channel buttons for stations. And the up down buttons for volume. It could not be any simpler than that. I did notice the TV seemed to be not as loud as it really needed to, so I even went and bought an inexpensive set of speakers, put those on it last week, and 'Voila the sound is great. Well, when I had asked her about the TV and the difference in the colors, and how much brighter and crisper everything was, basically I could tell she rarely turns it on. Now this is a woman that watched TV late at night, and during the day off and on a great deal. So, I could tell by her answer something was amiss. She could not "remember" how to get the channels up and down, or turn up the volume (so honestly she never even heard it at full volume), and basically I could tell she was not watching it much. This is what I am talking about. As "simplified" as I had made it. Even simpler than the other old way, with two remotes etc. She is too "scared" to touch the remote. She is too frightened to try to get the volume up and down, and said she did not "remember" how I told her to do it!? Then why had she sat there (and I had been over several times since putting the new one in). that she was not sure how to operate the remote and ask me to show her again? Those types of things are what truly add so much more "stress" to an already stress filled daily life of dealing with my own house hold, illnesses, etc.

Anyway, back to the subject at hand. I have a couple of things I do to try and "wind down", when things get too much for me. Sometimes it maybe just going in and baking a cake, or something sweet. I had mentioned I did like to bake, so that sometimes takes my mind off of all of the "gunk" in happens to fall upon my shoulders. Other times I may go outside, tend to my flowers coming up, take a walk for awhile around my long driveway. That is how I exercise during all of the pretty months of the year. I walk daily outside circling my driveway "so many times" that equal the amount of miles I want to walk daily. I may listen to my I-Pod and let "Matchbox 20" help to melt the stress away, or even as nuts as this may sound, I  "talk things out to myself", when I walk, or if I am driving around running errands. I know some probably understand and others think I am crazy. But, just being able to "voice" the stress and strain that is truly on my mind, and listen to it my own self, helps to take away that ever spinning bunch of stuff that seems to fill my mind daily. Other times it maybe "sofa" time with the pups. As I had mentioned in the post about them, a movie with each one beside me, can also let me unwind from the stress of a bad day.

Other times, I may "splurge" especially on some Sundays. We allow ourselves to run down to the "no-no" shop as I call it (the donut shop) and pick up of course all of those things we should not eat. But, sometimes once or twice a month, that bit of "extra splurge" kind of also helps to feel like you have "treated yourself."

The very MAIN thing I love to do when ALL of the "rat race" of bills, illness, medications, bills, doctors, cleaning, cooking, laundry, and more just push me to the :overload" button, then I take my Mom, and we go for either the day or usually we spend a "free" night at the Casino in OK. It is the Winstar, and once you step into the noise, the lights, no windows, no clocks, the sea of people to watch, the pick of foods... all of that suddenly takes and melts away all of the "horror" of our usual days in life. I can't think of anything as grand as getting completely away from this small town, away from the house, away from phones, mail, bills, and all the encompass having chronic illnesses and chronic pain;; as going to where none of that matters for a few hours.

It is "freedom" for me. It is "no worries" other than which "penny slot" machine I want to play next. Vacations are awesome, yet with all of the things that you need daily, it is difficult to really go on a true "vacation" without still worrying about medications and so forth. But, going for an overnight trip or just an all day, get up very early and leave on a Sunday morning. Zoom through Dallas when it is a rare occasion of no traffic, stop at our "favorite" stopping off place for a small breakfast, of all places "McDonalds", then heading up the road just another few miles to the Oklahoma State Line, and immediately seeing that huge Casino just another mile or two away. It has, and probably will always be the very best way for me to "leave it all behind" for a day or overnight, and recharge my batteries, so I can come home and feel some of that stress has been melted away. Also, the next best thing is "planning the next trip"! Usually we try and go once every couple of months. But, that depends on the weather, how we are feeling, and so on. It has been a "day off" long overdo right now. I am much MORE than needing that trip away. If our "tornado season" weather could give us a break this month, I hope to be up there "watching those reels spin" my troubles away.

Rhia Steele 04/12/2015

Wego Health Writer's Challenge Month