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

Wednesday, April 15, 2015

#HAWMC - WEGO Writers Challenge April 15th 2015 - Get Excited!

I find myself seeming to come back to some of the same things I've blogged about over the past couple of weeks.

I know for awhile and I still somewhat still do is get excited about getting to try a different medication for the Lupus/RA. I say that because if I am "trying out" a new one, that means whatever has been going on is just not working. Thus the change in medications. It is kind of exciting and scary at the same time.

Actually when I read articles about the latest in biosimilars, or new research happening, possibly a clinical trial showing promise, all of those make me thrilled that there is a possibility of a complete remission, maybe a cure, or a way to "prevent" many of the autoimmune illnesses. I feel like once we find "why" the inflammatory processes, the body attacking itself, and if we are getting these diseases and illnesses due to a heredity factor, or our own environmental issues, then that will lead to find how to put many other diseases or complete remission. How exciting is it to think if this is something a child in the uterus is already predisposed to, and someday we can "fix" that before they are ever born, would be something extremely spectacular.

On a more personal level of excitement, I always come to the "casino" part of my life. I love the idea of making the reservations, deciding what to wear, and everything that I do to get ready to go (especially overnight), is such a wonderful feeling. Once I am completed prepared, that morning we are leaving, usually pretty early, that first few miles across town, getting on the I-45 interstate gives me a kind of "anxious excitement" in ways. I am already looking so forward to that "McDonald's" where we always grab a quick breakfast. I know when we reach that point, being at our destination is just a few miles away.

I've always found that when you are planning something, whether it be a trip, for a day or more, or you are going to some type of special event, thus the anticipation of that is a thrill to me. Being able to have an article in our local paper about my advocacy, activism and Ambassador status also just gives me a very nice and thrilling moment. I know as soon as I open our local paper, and my article on one of the first few pages, usually the 2nd page, I feel pride, I feel I am giving out to the public, information that is vital to them.

Even planning a day shopping trip out of town with my Mom is always fun. I get excited when I find terrific bargains, and can "clean up" on certain items, whether it be clothing or something for the house, I am thrilled when I see just how MUCH I've SAVED!



Tuesday, April 14, 2015

#HAWMC - "I feel best when..." WEGO Healths Writers Challenge for April 14th, 2015

"I feel best when.."


I must say, as silly as this may sound, trying to truly tell someone when I feel "my best" is a bit more difficult than you might think. We all have our "moments" where exactly as the "prompt" says, when we feel we could take on the world. Yet, when you are dealing day to day, even moment to moment with chronic illnesses, pain, doctors, medications, insurance, pharmacies, those moments seem to be few and far between.

I hardly mean to sound "depressed". That is not what I meant. But, I often feel disillusioned by the progress I see in my health matters, as far as how my medications and physicians are helping me to "feel better". We all too often see these ads on television, all of those ads we are bombarded with online and via email where this, that or the other is supposed to be the "break of the century". The medication is thought to be the "answered prayer" for all of us with one chronic illness or the other.

Then I read about how this diet, or that exercise may make me feel better. I am not knocking down all of those out there trying to find ways to help us, but even after 8 or more years of medications and doctors, I am not much better physically, and more certain at times not emotionally.

That be said, I will move on to the subject at hand. I feel best when "I can get in my car, pick up my Mom and leave for an overnight girl's trip". At that moment I feel so very "free" from the mundane and often "controlling" life lead when you are chronically ill. When I get an unexpected very nice comment, about something I wrote, that gives me a feeling also of that I AM accomplishing something. Much of my advocacy work has a tendency to make me feel "useful", that I have a purpose in life. I am not just out here "disabled", unable to work a job, and just "flounder" around, with no direct reason to be. So, anytime I do advocacy, activist, or volunteer work, I feel like I am on top of that "mountain" I use to describe in my own writing, and at those moments when whether it be a "blog post, or a Facebook post, or some other action such as going to an event that is about some of my advocacy work, I do get those "endorphins" moving a bit, that makes one feel as if they have truly gone that extra mile.

Both times, (especially the first time), my very first poetry book was actually published, and I pulled one out of the box and was able to hold it in my hand, was one of the very best moments in my life! It had been a dream of mine since I was about 13 years old, to be a "published author/writer". So, when I was able to pull the 2nd one together in about 5 months and it became published, again that moment of holding something "tangible" that you can see your own name on, and know that your words are now around the globe for whomever wishes to read. That times of glory I feel then, are definitely monumental.

At one time I was fortunate enough to have another author publish some of my poetry on his website. He came out with a new addition every month. So, sometimes I would send in a poem, or a piece of writing that I felt was truly something to "inspire" others. Several months down the road, I had an email from a couple who were about to be married. They wanted to know if I minded them having my poem read during their ceremony! Talk about elated! First of all, they had actually "read" my poetry, and it meant enough to them that they wanted to share it with their own family and friends during one of the most important days in your life. I was stunned, but also felt like I had truly "touched" someone. That is an awesome feeling to have for sure.

When my husband bought my set of drums and surprised me several years back with them, I was so thrilled. At that time, my chronic illnesses were not really known about and we did spend a great deal of time practicing together. Him on the guitar and me on the drums. When we would get a song written, have the music that went with it, and could put it all together to be recorded, that was always a time that I and him of course felt so very "accomplished". Of course we knew we were not "rockers", or would ever be "famous". But, the ability to take all of the steps needed and come up with a great piece of music, is like writing an incredible poem, or a prose.

My "foundation" as far as what gives me courage to get out of bed each day, is absolutely the HOPE, that I can touch someone's else life. There is no greater feeling as far as for myself, than when not only have I helped a person or persons, and made a difference in a life. So, feeling on top of the mountain, and wanting to shout out, "Here I am World" I have accomplished it"... comes from those moments that I know I have helped another or others find something to smile about, to make them feel good about, and feel that each day, giving a piece of myself, is what my life is all about.

Rhia Steele  



Monday, April 13, 2015

Perfect comeback #HAWMC Wego Health Writers Challenge April 13th 2016

I have to say for the most part, I don't have many people that are "on my back" about what I do, don't do, should or should not do, when it comes to my chronic health conditions, RA, Lupus, Sjogren's, Raynauds, heart problems and the list continues.

There is one exception to that although. Mothers have a tendency to be "overprotective. It matter not if the kids are 2 years old or 52 years old. For them, a Mother is always the protector. So, my Mom I must say would be the person that I am constantly having to give a "perfect comeback" to when I want or do something, and she feels it is harmful to me, or could make my conditions worsen.

So, when the subject comes up about I should not do something such as do light yard work, or gardening. Or a good one is always how upset she gets when I must drive to Dallas to see some of the physicians there. She feels I should not "drive" that far (35 miles one way), and of course he concern is more about the high amount of traffic in the larger city, than the mileage.

My "perfect comeback" for many of her needless worries is that "if I don't drive there, or I don't do the light law work, or go wherever she feels I should not especially "alone" I ask her who will? She is 80 or going to be in August, and in all honesty, she can't even put gas in her own car. My husband is parpalegic and he is not allowed to drive at all, and would not be able to if he even thought he could. Both of my grown kids are a very long distance away. Especially my daughter. She is about 8 hours away. My son, although closer is still far enough away, that he can't simply drive down here anytime I need something, or need to go somewhere, he has his own life to deal with. We have no "friends" that can do any of these things. So, if I don't clean, cook, take us to doctor's appointments, pick up medications, make sure clothes are clean, the trash is out, and the list of course is endless, then it would not get done at all. Do I like it that way? Of course not. Before my husbands accident a year ago, he was "my caretaker". He did some of the dinner cooking, could run to the market if I was not feeling well, and even though I still did many things, when it came down to it, errands, groceries, some of the cooking, etc. he could do. Which took a huge load off of my own shoulders. Now, it is no longer that way. He can walk, but not far, and not without a cane. He is not able to drive, he can't bend over, his balance is very impaired, and so forth, so "me" is the only "person" I have to depend upon.

So, usually whenever my Mom, or anyone that knows me well enough to ask me "how I manage it", or "should I not be doing a certain thing"; my answer is usually just as I've said. "If I don't take care of all of these things, then how do they get done, and who shall be able to do them?"

For others in general, I let them know, yes, I have several very "silent" but serious illnesses. But, I do listen to my physicians who all know the massive amount of "stress" related things I have to take care of. If it comes to a place that I get too ill, then I am just on the sofa, for however long that is (last time while my husband was still in the hospital I had double pneumonia) and was down for about 8 to 10 days. I've had pneumonia again since that one, and still I was down for about 5 days. Those are the times, that some things just don't get done. So, I let people know that I am fully capable of taking care of things for the most part, and those that either feel I should "not" do what I do, or those that feel since I am doing everything, that maybe "I am not all that ill"... I give them a quick reminder about the "spoon theory" also. That is one of the best ways to also explain to people about how much you do, why you do things in the manner you do, and when that days "spoons" or whatever you may want to use as an example run over, then I may have to "borrow" from the next days. Then I "catch up" when things are smoother.

It is never easy to explain your "invisible illnesses". But, for those that truly know just how ill you are, it is never easy to explain to them, you also can't just sit down on the sofa, and allow yourself to "wallow" in pity and despair. Life moves forward, and that means I must do so also, even on those days that I may feel I just can't take another step.

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

Saturday, April 11, 2015

#HAWMC Saturday April 11, 2015 - A Letter to my Two "Fur-Kids" Thanking Them for Their Love and Support

Oddly enough, we hear more about this everyday. Someone critically ill, and they get some type of a pet, dog, cat, or so forth, and their condition sometimes either improves, or the pet may help to "point out" a tumor. Our pets are usually very incredible animals. They are a companion until the very end. They love unconditionally. As long as they are fed, kept safe, have good clean water, and like mine are spoiled rotten. (I always use the old saying "My pups are not rotten, they just smell that way!) I know it used to be a saying for those with kids. They can be providers of comfort, they pick up on whether their owner is not feeling well, or if something is wrong, they can sense something is out of the ordinary.

My two pups, and since they have been grown for a long time, Tazzy, who is about 10 years old now, part Pug and part Pomeranian, and my Bubba-Gump, who is about 5 years old, and he is Chi-Weenie. Part Chihuahua and part "Weenie" or Dachshund as the proper name is for them. Oddly enough, Tazzy is much more Pug than Pom. She looks and has all of the actions of being much more Puggy, than Pom. As far as Bubba, he is definitely a mixture of both. That nose is on the floor, always sniffing, looking for something else, even a crumb to eat. I call him my "crumbinator". He is always getting up any and every crumb I drop, no matter whether I am eating, or cooking/baking, he loves to sit right beside me for those crumbs or a lick of whatever I am baking, just like kids do, when I am ready to wash a bowl etc.

They offer so very much comfort to me. When I am ill enough to be on the sofa, then they are there, one on each side of me, as close as they can get, as if they were like two angels watching over me. If I am upset, they both can tell. Especially if I am crying about something, they both want to come up to me, and give me "kisses" and wipe my tears away. Even though at times, they are almost worse that kids, I just don't know how I would get through most days without them right at the door, when I walk in from errands. Or keeping me company, watching movies with me, when I am not feeling well.

When Jim spent over 3 months in the hospital last year after the wreck, they sensed that I was "alone", and it was like they were guarding me. Day and night, always listening, always watching to make sure their "Mom" was safe.
When I go to take a shower, I leave the door open a bit at the top. Usually it is Tazz, but sometimes her and Bubba will sit right there by the door of the bathroom until I am completely out of the shower, dried, dressed, and ready to come out of there.  They keep watch on me, to make sure I am okay.

No one as far as humans go, I think can show as much unconditional love and care for you than a pet. Especially dogs and many cats. They just have a way to either make you laugh when you are sad. Or they can calm you down when you are upset. If I feel something is wrong or out of whack, you can bet they sense it also. Even in the middle of the night, they can be sound asleep, and out of the many noises, from the train that the tracks are nearby, neighbors cars in and out, both of them will begin to growl very low if they hear a "sound" that is not something they usually hear.

I have to admit Bubba is "bless his heart" a bit skiddish when it comes to something loud like my vacuum cleaner. He will run and get into my husbands arms. He does not like any of my items, such as the blow dryer, the vacuum, my carpet shampooer, or anything that makes much noise. Yet, as soon as I turn it off, and are going to put it in the closet, he will run at it, bark and growl, like he was some huge watch dog. It is just too funny to watch him act like the guard of the house, once it is off and on its way to the closet.

Tazzy does silly things like chase after my "swifter mop" or my duster. She will jump, growl, try to snatch it away, anytime she sees me get those out, she is ready to play.

Bubba loves a game I play with him on marshmallows. I fix sugar free Jello often, and I usually put a few in it. He can sense those marshmallows all the way in the living room, under his blanket asleep. And before I even get those out, he knows the sound of the "jello" boxes I guess. Because as soon as I begin to pour the powdered Jello into the bowl, he comes running. He jumps up and catches them when I throw him one. He loves that so much. I don't think he really loves the marshmallows. It is all about the "game" to catch them.

So, both of them, are my rock, my foundation, my friends, my "fur kids" and they keep me going even when I feel life has truly "beaten" me down. I can walk in and see their wagging tails and those smiling faces, and all is right with my world.


 Bubba Gump (when he was about 9 weeks old)
Tazzy at about 3 years old


Jim, Tazz and Bubba Gump in about 2013


Friday, April 10, 2015

"Comfort Food?" Sweet, Salty, Tart, Citrus, Beef, Chicken, Pork.. Chinese, Tex-Mex, Hometown American, French, ORA is it another? WEGO #HAWMC

#HAWMC
WEGO Health Writer's Challenge April 10, 2015

Friday and What We like for "Comfort Food?" Do I cook, bake, and make most meals at home "from scratch?" The answer is YES! I am a home grown Texas/Czech background, and my tastes very widely. Fro, made here in our town "Klobase" (usually half pork and half venison with LOTS of black pepper) stuffed into a casing and smoked in a smoker, to Poppy Seed rolls, Kolaches (sweet pastry dough with prune, cream cheese, apricot, or other types of filling put in a little "well" in the middle of the dough. Then allowed to rise and then bake. Just to name a few down home "Czech" favorites around my home town.

I've been one that LOVES to bake sweets all my life. From fudge, to "no-bake fruitcakes". From Red Velvet Cakes, to lemon custard pie, you name it I love to bake it.

I also am quite the user of a "slow cooker" or "crock pot", depending on what name you choose to call it.

So, if I had to pick a favorite that I cook, and consider "comfort food" is a bit difficult for me. I LOVE sweets so well, and usually if I am stressed or upset, the first thing I think is, cookies, pie, cake, or just about anything sweet around.

But, my home made all from scratch slow cooker low in fat, carbs and calories has to be my favorite to cook, and what I would say is my favorite "comfort food".

My chili contains very little "beef". I know that sounds nuts, but I use "ground turkey" for a large portion of the "meat". Then I usually buy a very small portion of beef, usually something like "stew meat" or a piece of a cheaper piece of beef, because I know it will definitely tenderize by the time it is ready to eat. I also for the mot part have cut down a large amount of the "tomato" base for my chili. Both my husband and I have problems with GERD, thus one of the reasons I first of all make my own chili, and enough for several meals to freeze, plus I can keep up with the calorie count in the portions making sure I put in it, what I want to taste it like when I'm through.

I also rather than so much "meat" of any kind put LOTS of different types of beans in it. Quite often I'll have some of my pinto beans in the freezer, and I use some of them in the chili But, I also pick up about 10 cans of different types of beans to go into it. I love the very dark kidney beans, and the light ones also I also use a few cans of black beans, red beans and if I don't have any of my own cooked, then I add a couple of cans of pinto beans into the mix. It varies, but usually there are on the average of 10 cans of all different types that truly give it that thickness and hardiness that chili needs. Plus I rinse all of them off to rid a great deal of the sodium in them, plus I don't want the juices in those cans to "mix" with the taste of the chili, Then I add several different types of steak sauces into it. I try to limit myself to 1 can of either tomato paste, or better a can of roasted tomatoes in it. From the couple of steak sauces, to the tiny amount of tomato, then I put some white or yellow finely chopped onion into it, a bay leaf, a good deal of chili powder (we like a lot but it is up to your preference) as far as how much to use. What I do is start out with a bit less of all of my spices. I allow the entire thing to come to a good boil in the cooker, then add more as it cooks. There is cumin it in, a bit of paprika that is more for color than taste, LOTS of black pepper, some sea salt, but I try and stay away from as much sodium as possible without ruining the flavors of the chili. Sometimes I put some chopped garlic in it, but just a tiny amount. I don't want to overpower the other spices with too much garlic.

As it cooks, if it seems to be too thick then in small amounts I add very hot water to it, then wait and watch before I add more.

My very favorite way to eat it is usually the next day, after it has cooks for 8 t0 10 hours in the slow cooker, with corn chips, mustard and a bit of grated cheese on it. If you are not familiar with "Frito Chili Pie"... probably more of a Southern/Texan sort of dish, then you are missing out for sure.

Cooking as a whole has always been another one of the ways that I tend to get rid of my stress. Once I'm in the kitchen, then my attention is completely focused on whatever I am preparing. There are many great memories surrounding me from years past when I am baking or cooking. We always had a huge dinner at my Grandparents home all the years I was growing up. Most of the cousins were about the same age, so Christmas, Thanksgiving, Easter, and others give me that special feeling as a child of the love that was shared and prepared in that kitchen.

My Grandmother who was full Czech, took care of me the years before I went to school. So, I spent lots of time in the kitchen with her, watching, then getting old enough to help and those memories also hold a very special place in my heart. Even though she has been gone now for about 12 years, the special times in her kitchen will always remain vivid in my thoughts.


#HAWMC


Thursday, April 9, 2015

A "Daunting Challenge in Life" WEGO Health Writers Challenge April 9th, 2015

I could start off with a couple of periods in my life, that offered up a "challenge" or actually more than one, that truly put me into the realms of being not so sure I could "last" through that time.

I had a couple of those types of circumstances at 25 years old, and having to have my face "fixed" mainly my upper lip from a 4 wheeler accident that honestly I am here today wondering why I even made it? Another story for another time.

Also, at about 40 years old, suffering through a heart attack, by myself during the very beginnings of it, as I was also going through a horribly abusive relationship, him leaving completely, and the decisions that I had to make in order to basically "stay alive". Again, another story for another time.

There was the time at 50, I spent well over 6 weeks in two hospitals, and to this day, I don't think even my doctors knew exactly why I got so ill, in such a very short amount of time, and went through at least 4 surgeries, and was told to "call my family" on one of them, because they were not sure what the outcome would be. Once more for another time.

Then, there is what happened a year ago March 26, 2014. I had been in Washington DC, with the Arthritis Foundation, and their annual "Summit on Capitol Hill" for 3 days. I had found out very close to the date it was actually going to happen, and sent in an application for a "travel grant". I figured for one, I was too late to even get anywhere as far as a travel grant, plus at the time my health had been waxing and waning with Lupus and several severe flares I had been having at that time.

Yet, as "fate" would have it, I DID get the TRAVEL GRANT, and I was accepted to actually to go Capitol Hill, face the very Congress I had always wanted to face, and tell my own story, along with the story of others. I felt if I could do that, I could make a huge difference in how the nation, the world, and those in Congress "viewed" Autoimmune and Arthritic Diseases. Thus, it was a dream come true and I was in shock for a day or so, in disbelief I got the award to go.

Yet, I did. And even up until the very wee hours of Monday morning, April 24th, 2014, I was not sure I was truly well enough to go. But, a very good physician at one of our local Urgent Care Centers, happened to have Lupus himself. So, he gave me the medications I needed, along with an injection of corticosteroids, and I was up on my feet and able to make that flight. I was elated.

My spouses Step Mom lives very near DC, and since I had never met her, plus my husband had not seen in her over 10 years, he was going to fly out on that Wednesday the 26th of March, to meet me. We were to visit and also have a vacation until the Following Sunday, before flying home. It was kind of a trip of a lifetime for both of us. I definitely loved what I saw on Capitol Hill, and had felt like the trip had really given me more hope, that what I was doing as an Ambassador, activist, and advocacy voice, truly would make a difference.

On that Wednesday, my husband was to drive to Dallas, to the DFW Airport. It was about a 65 to 70 mile drive, before flying out. I had been finished with my own items to do with the Summit around noon that day, so his Mom was to come by the Hotel and pick me up. He was to get into DC around 7PM or so.

Just about the time it was close to time for me to be picked up by my Mother in Law, my cell phone began to ring, ring, ring, and ring. I had been outside of the Hotel, it was very noisy, so I really had not heard the phone ringing, until I walked back in. After seeing the number of calls from my daughter, I rang her back right away. Her voice sounded terrified, and as she said, Mom, Jim's (my husband) been in a very severe car accident in Dallas. He is in the ER at Baylor Hospital in Dallas, and the doctors need to talk to you ASAP! I almost lost it then, but I held myself together long enough to make that phone call. As I listened to the "voice" of the doctor over the phone reading out this "LIST" of things wrong with Jim, I just sunk to the floor and was sobbing uncontrollably. So, one of the kindest men I've ever known, had been in our group during the Summit, heard me. He came over and asked about what was happening, and I asked him to please take the phone and write down what the doctor was telling him. Most ribs broken, a very severe back injury from possibly C-7 through T-7, broken shoulder, concussion, a broken leg, a whiplash, a "nick" in the Aorta, and the list continued to seem endless.

About that time, my Mother In Law, came up to tap me on the shoulder. She of course didn't know any of this at the moment, so she thought I was crying because I was happy she was there to pick me up. I had to look this woman, my Mother In Law, that I had never met until that moment, in the eyes and tell her, that her son, was in critical care, headed to ICU in Dallas due to an 18 wheel tractor trailer "running over him" in Dallas. By this time, the woman who I just owe everything to from the AF had already spoken with Chris (the man helping me on the phone with the doctor), and they had made flight arrangements to send me to Dallas within a couple of hours. I am still in such awe and have so much gratitude for them, and her. I still feel I owe them so very much, for their kindness and generosity at that moment.

Basically, when I look back on it, the next 72 hours, I believe I ran off of shock, horror, dismay, and honestly I think I had truly become "dis-associative" in order to be able to "deal" with everything that needed to be done so quickly.

Needless to say, that date was just a year ago, this past March 26th. For almost this entire year, between my own ordeal with totally losing my own teeth to Sjogren's, Jim's long and laborious recovery, the doctors, bills, medications, therapy, the 3 months he spent in the hospital... all of the integral parts of him being partially parapalegic. He had been MY CARETAKER, before the accident. NOW, and probably possibly forever, I've had to become a caretaker for him, myself and honestly often my Mom, who will be 80 years old this August.

I've had many, many people ask me how I have been able to "cope". Truthfully, I am not even sure if I have. There are days, moments, weeks, that I feel so totally trapped, others I feel we will conquer, and times I am so ill myself, like I was last year right after his accident, I came down with double pneumonia. I had to do everything in my power NOT to have to go to the hospital. The doctor really wanted me to. Yet, I just felt if I could get well at home myself, then I could get things accomplished, that I would not be able to in the hospital.

Day to day, moment to moment, hours, weeks, months and now a year later, I'm not really sure if I am "sane", or if I've become insane. I've tried to take each step in stride, hoping for a better tomorrow, week, month, and years.

Yet, I am not sure exactly what to tell anyone in this situation other than, believe in yourself, try to take care of your own health as much as possible, accept others help when they offer it, or ask if you have someone that could help with some things. Try to stand tall, know that each moment, each step forward is one more to whatever a new "normal" will be. Also, keep hope and faith, along with asking others for prayers too, can be a huge help to be able to accept what has happened. You must finally in one way or the other truly "deal" with the issue, and then you can work on all of the other stuff.

Plus just that. Come to your own place that you must, you have to accept, "normal" as you knew it will never be again. You must find a "new normal"... and sometimes possibly several of "new normals" through out the process....

Rhia Steele April 9th 2015



Wednesday, April 8, 2015

"Things Remembered" - #HAWMC - WEGO Writers Challenge April 8th 2015

This is probably one of the simplest of all things for me to write about.Without one doubt my "Grandmothers" blanket that has satin/silk border around the entire thing is and always will be something near and dear to my heart.

It was hers and she kept it in beautiful shape actually for me. I have to say I've worn out MANY blankets with the satin/silk border on them. So even though this one that was my Grandmother's is not the "original" it of course still holds the many memories of me rubbing the silk on my blanket. I've kept them each for many, many years. Once I found one, that had the exact type of "satin" border I loved to rub, I would keep it until every little bit of that was rubbed off before I would give it up.

I have "rubbed" silk on a blanket as far back as I can remember. I guess even before I can recall it, Mom said I did that rather than sucking my thumb etc. I found it a bit embarrassing to say I still do this, and here I am just over 50 years old. but, I do it out of being stressed. Or, if I am sick, or down with a bad flare, then I want that blanket. I will rub that satin anytime I am down and out, stressed out, feeling lousy, the silk is like something that calms me down.

My Grandmother passed away over 12 years ago, yet I still have such incredible memories of her each time I put that blanket on my side of the bed.

I also have another item, that is about as near and dear to me, that in fact is also something from my Grandmother,  She had a cookie jar that was covered in different kinds of "cookies". It was ceramic and has a "walnut" for the top on the lid. I LOVED that cookie jar from the time I was old enough to watch her bake in the kitchen. She just about always had home made, from scratch cookies, almost like a tea cake, and they had one "whole half of a pecan" in the middle of each cookie.

I had said for many, many years, that if something happened to my Grandmother I wanted that cookie jar. There were many beautiful pieces of china and silver that we had given her over the years. Yet, that cookie jar held and still holds so many awesome childhood memories for me that take me back to a much more serene, simple time in my life.

So, after she passed away, my Mom made sure it was saved for me. Along with it, was two of my Grandfather's fishing reels, because I fished with him and Dad when I was young, and of course the blanket. Also, I have a completely by hand done quilt that she also did for me.

So, as time continues to pass by, faster it seems with each day, there are a couple of "material" items that always help to bring back those wonderful times when I played under the shade trees at home in the Summer with my table and chairs, or fished for "crawdads" in the ditches around my Grandparents house, watched Dad garden, take care of quail he used to raise, go fishing, go to the deer lease, vacations, and many, many incredible memories at my Grandparents home, from all of our family holiday dinners, to just how wonderful it was to have a place that almost felt like a refuge from life when it seemed almost too much to bear. 








Tuesday, April 7, 2015

World Health Day! Tuesday 7th, April 2015 WEGO Writers Challenge #6 #HAWMC

After being diagnosed with many illnesses, mainly chronic in nature, our diet can make a huge difference in the way we feel.

For instance, those who are diagnosed as diabetic usually find themselves on a diet with much less sugar, carbohydrates, and things that can raise their blood sugar and make them even more diabetic. The lifestyle also usually includes weight loss, if weight it a contributing factor, and more exercise.

Those with certain types of headaches, such as migraines have what some call "triggers". Some of those triggers that can cause this type of headache can be certain wines, certain types of cheese, and other foods that can also make the headaches more frequent or worse than they already are.

With all of the different diets on the market today, what is sad is just how many of us in this nation are considered either "overweight" (20 pounds over your suggested weight), or worse "obese", which is 20 plus pounds over your suggested weight.  Americans tend to be one of the most obese nations in the world. With all of our high calorie, high fat content, high carb foods; especially those right at our fingertips at fast food, drive through places to eat, we lead the world in the most ill people that have weight as a huge factor.

Heart attacks, diabetes, strokes, joints wearing out, legs that cannot hold our weight without some type of assistance such as a cane, or walker have became a common site in this nation. What is worse, is how many of those that do have health issues that are directly effected by what they eat, don't do the correct things even though they realize it is detrimental to their health.

As far as the Lupus, Rheumatoid Arthritis, Sjogren's, my joint replacements, osteoarthritis and heart problems, I don't necessarily follow to the exact "t" a so called diet of any kind. But, I have always been very careful to watch my intake of calories, carbs and bad fats, due to not wanting to develop other problems such as diabetes. Also, more weight puts a difficult strain on your legs, knees, hips, and feet. It also can effect the stress on your spinal column. So, anyone who has had or does need to have a joint replacement, especially below the waist should try to maintain a healthy weight, and get the exercise recommended in order to have success with a replacement joint.

There are things now since I've been diagnosed with Sjogren's that I must do on a daily basis that does effect my diet. I must have something to "sip" on all the time. I am constantly with some type of diet drink, green tea iced, at times water, but I carry a drink with me everywhere. If I don't my mouth and throat get so dry, it is like I have an entire mouth full of cotton. Or it feels as if someone put glue all over my mouth, and it sticks everywhere. I take Lasix daily. Since it is a diuretic, is another reason why especially in the warm months, I must try and continue to keep hydrated at all times. I could get my electrolytes out of whack and cause me to lose too much potassium. Which if it gets low enough, can put you at the very least in the ER, getting IV potassium, or like a friend of mine just lately, had to be admitted for a couple of days in order to get her potassium level back up. Potassium being too low in the body can cause severe fatigue, severe muscles aches and pains, cramps of the muscles, and set your heart rate off, or you could possibly die if it got too low and was not taken care of properly very soon. So, having the proper balances of those types of minerals in our bodies is critical for many reasons.

I have always tried to stay on a diet of fresh vegetables, fresh fruits, very little red meat, more chicken, fish, and beans. I also buy most everything I can that is lower in fat and calories, such as cottage cheese, I buy Almond milk, lower calorie, "butter spreads", low calorie sour cream, and so forth. I use Splenda, rather than sugar or brown sugar. I use low calorie or Splenda based products such as soda, cake mixes, frostings, and any other baking or cooking product that is with less fat, calories, and uses items such as Splenda to lower the "bad calorie" counts, and so forth.

Since I love to bake, I have all types of recipes that I use and I substitute things such as using "egg beaters" or an equivalent, Splenda of course, I use wheat flour most of the time, buy low calorie canned milk, cream cheese lower in fat and calories, salad dressings and on.

We have SO MANY of "both" choices, even in our fast food and sit down restaurants. Buffets now tend to have lots of choices at their salad bar, and have many vegetables, usually baked fish, and alternatives to your higher in calorie or fats, like red meats, and so forth.

Many of our fast food places have now put calorie counts, fats, and carbs right on their items. They also have began to offer alternatives to high fat foods, especially to the kids. Applesauce and milk rather than fries and a soda. Yet, with ALL of the changes, still we have an ever growing population of obesity, to the point of being an epidemic in our country. As ridiculous as that sounds, due to the number of work out gyms, running tracks, and activities with baseball, soft ball, little league, soccer kids, and so many activities to keep the kids fit, and more on their good weight side, our kids are growing up to be very young, very obese adults. The numbers of children with a weight problem, high blood pressure issues, being diabetic very early, having all types of joint problems, and much more is a trend that just needs to be under control.

Of course that all starts with the parents, and what they offer and teach their kids to eat at an early age. Both of my children, watched me live on lower calorie, low fat foods, walk 5 miles a day, back then did some aerobics, and kept my weight in check.

Keeping my own weight in check for many years has been a task that was not and still is not all that easy. I've had issues in keeping the weight off since I was a teenager. Not due to what I ate when I was younger, and not because I did not get out and play. But, due to possibly some type of "genetic" issue I fought since I was about 20 years old to keep an extra weight off. In fact, I almost went the opposite way about 10 years ago, just before I came to know about my autoimmune problems. I got down to honestly a dangerously low weight. I stood back then about 5'5"tall, and got down to 101 pounds. As much as I loved the "0" clothes, and the extra small clothing, I know other were very concerned. By the time we had moved back to Texas, and I got settled in, then began to have multiple joint and joint replacement surgeries, my weight then came up to somewhat normal. I lost a few pounds, and fight daily with about 5 to 7 pounds I want to keep off because I feel my joints certainly don't need it.

I still try to maintain a diet of fresh vegetables, fresh fruit, and star away from most red meat. I use ground turkey for anything that might call for "ground meat". I also make "turkey burgers" when I am making burgers at home. I've also ordered a turkey burger in a restaurant and have had them very flavorful. I don't "fry" anything. I either use my slow cooker, (for instance I make home made turkey chili), bake, broil, and sometimes grill meats. I've researched some items as far as food goes that could help with the autoimmune illnesses. But, for the most part, making sure to eat a well balanced daily healthy diet, along with some type of regular exercise program seems to be the best way I can take care of myself as far as my eating habits with the autoimmune illnesses.

Rhia Steele 4/7//2015











Monday, April 6, 2015

"My Hero" - WEGO Health Writers Challenge Month for April 2015

I guess I could say I have a couple of "hero's" that have helped to guide me along the way of life. One in particular was back when I was a teenager. It was our next door neighbor, a nurse at the local hospital that was right around the corner from my home. In fact, she still lives in the same house, right next door to my Mom, as they always have. Of course Dean (the neighbors name) has long since retired, but the things she taught me back then have lasted throughout my life.

She brought me in as a "Candy Striper" with the red and white striped pinafore and the write blouse underneath. I even worn white shoes, that almost looked like nurses shoes back then. I got to do so many things that most other girls that came in to be one of these volunteers probably may not have gotten to do. She took me under her wing, taught me how to sterilize and "autoclave" instruments back then. They did not have many instruments that were "thrown away". Most were stainless steel, and they were sterilized, put in certain packs for certain surgeries, then put in an "autoclave" that really sterilized them from all germs, bacteria and so on.

She let me take care of the newborns, I took them out to their Mom's, and we even made "Christmas stockings" for the ones born at Christmas to send them home in. In fact, one Christmas I was in the local paper with a new Mom and Dad, and their baby going home in one of the stockings we made.

There are so many things Dean influenced me on, and being a nurse was something I wanted to do for the most of my younger years. But, she also taught me much more than just about nursing. She was like a "2nd Mom" to me. She showed me how to crochet, how to do counted cross stitching, and embroidery. She took me to Dallas shopping with her quite a bit. She taught me to sew.

When I was abut 14 years old, I had an extremely bad circumstance that happened to me, and she was the only person I felt I could go to about it. Even though eventually I had to tell my Mom of course, she was always the first person I went to no matter what the problem was. Of course now, the years have taken much of our communication away. We see one another every now and then, but she is about 90 years old plus, and has her own set of health issues, and her own kids, grand kids and great grand kids that help her, and she helps them.

Yet, time has never taken away all that I learned from her. The memories, and many of the things she taught me continue to have an influence on my life today.

I am so grateful for those young years with her, and how some of what I learned back then from her, continues to help me through life. Plus many of the things she taught me, had shaped my advocacy, activism, and volunteer work through out these past 7 to 10 years also.

There is another young woman that stepped into my life a bit over a year ago. She is one of the most compassionate people I know. Her ability to make you feel "useful" and "needed" is just something I don't see much in others. For the most part life keeps us so wrapped up in our own daily "grind" so jobs, family, friends, and so forth at times also effect how we treat others. Laura is so patient. No matter how busy she is, there is always time that she takes to answer a question, or send a quick email back. I've learned so much about advocacy over the past year with her help, plus I've also learned a great deal about myself, and just how strong I am and often don't realize it. I have also been taught so much about how "one email", one voice, one post, or even a phone call or letter can make a huge difference.

I used to think like many others, "How can I, just one person, ever make a difference in how the government, or some other place think on a certain illness, disease, treatment and so forth"? Yet, through the teachings of her, and her way of showing me just how much of a difference my voice does make; taught me to help others, and encourage others to do the same. I now try and persuade those that think as I did, gosh there is no way a call to my local, state, or federal Congress Member will ever make any change. Yet, our voices do make change! Our efforts, whether an email, voice mail, Twitter post, or any other Social Media post, can be the turning point in changing how research, funding, from the medical profession to our own government entities "see" these chronic illnesses, syndromes, and such. It can mean the difference between funding getting out there for a new medication, or a study that could mean the end to some of these illnesses. But, if "I" don't make a step forward, then I am not teaching others to do the same.

Thus, through this bright, intelligent, vibrant, patient, and very benevolent woman, I have learned just how important it is for me to speak up, speak out, and tell my own story. If I tell my own, then I am giving others the courage to also step forward and tell their stories.

I've had a couple more people that truly are my "hero's". My Dad, my Mom, and several others along my winding rivers path of life. But, the two I've really mentioned are those that helped to shape my life, my goals, aspirations, and ability to keep on "fighting the good fight" against chronic illnesses and chronic pain.


#HAWMC





Sunday, April 5, 2015

News To Muse - #HAWMC Wego's Writers Challenge 2015 "Breaking News"

First of all, I am sure, like myself, many of us really "want" to talk about our triumphs, yet we don't want to seem to be "gloating", "selfish", or as if we feel w are the only people in this world that are doing things "right".

The last 5 years have been up and down for me. Right off the very first, my main accomplishment, that took the entire year of 2014, was to become a "Platinum Ambassador" for the Arthritis Foundation! When I received the email telling me that, I was a bit more than elated. It did take a great deal of effort on my part to go that "extra mile" as it's called, to get to be in that "status" for the AF. Hand in hand with that, was my 2014 Washington DC Summit on the Hill visit, that I went on with the Arthritis Foundation, and I got to do ONE of the couple of things I had always dreamed of in life. That one was to "stand upon the steps of the White House" and tell my own story of the horrid nightmare of these illnesses, ranging from Rheumatoid Arthritis, osteoarthritis, JRA, and of course other autoimmune illnesses that can sometimes run hand in hand with them.

There I was, living my dream. I did get to tell my own story, several times to members of Congress and/or their legislative assistants. I did not really "stand upon the steps of the White House" to do it, but being in the Halls of Congress, both House and Senate was close enough.

I was proud that I had been able to develop a good relationship with my Federal Representative in my District, which included getting to go to a "Town Hall Meeting" last year when he was here, back home where I could also once again tell my story.

In the past 5 years, I've also got to live my first dream I guess you could say. I became a "published" author. What was even sweeter about that deal, was that I not only got one book published, but actually published 2 books, within about 6 months apart.

I am thrilled that my activist, advocate. and ambassador tasks are becoming more. In other words, rather than just contributing to my own Facebook, Twitter, Pinterest, and Blog; I've been able to do many other items of advocacy work with some very famous non-profits, which I feel in itself has been and will continue to be a remarkable force that within me, drives me to want to help others. So, those things I do that make life either less painful, less stressful, possibly develop research in the future, or even find a cure, I am thrilled that I have remained steadfast in my activism. I hope to for many years to come.

I've had several articles published about my activism, as well as about my books being published in our local newspaper. That is always something that gives me a feeling of "accomplishment". Even though there are many places I wished would pick up on my blogging and writing, if I never do, I will always and forever feel the pride that comes with having a blog that stays very up to date, and being able to see others follow me on Facebook or Twitter.

I have also had 3 different "Proclamations" dedicating an entire month to "Lupus Awareness". Two of those were actually were signed by the Governor of Texas. The other was signed by the Mayor of my town. I have those proudly framed and on my wall around my desk.

I've survived having ALL of my teeth pulled because of the Sjogren's literally rotting them from the inside out within less than a year. So, it took almost a year to the day that I spent several occasions in the dentist chair for hours, getting the rest pulled, then having dentures put in. Due to the Sjogren's then the last portion that actually just took place, was to have "mini implanted titanium pins" put into my bottom jaw, in order to hold my bottom dentures in place. Between my own bone structure, and the lack of saliva because of the Sjogren's, I spent about 4 months trying to keep those bottom ones from "floating" around anywhere they pleased. I just finished the process up on March 31st, a few days ago. Believe me, as many things in life can be nerve racking, having that many teeth have to be pulled (even though some had not fallen out, they showed in the special digital X-ray to be all rotted). I would not wish any of that on an enemy. But, sometimes we have no choice in life but to do something that is not really all that pleasant.

So, all in all, even though I am not one to be able to "pat myself on the back", or "toot my own horn", I will say that over the years I've been elated with my own actions that lead into helping others. Those are the moments that I am the proudest of.


WEGO Writer's Month Challenge  #HAWMC

Saturday, April 4, 2015

Creatures of Habit - WEGO #HAWMC for Saturday April 4th 2015

       Today's Post for WEGO Health Writers Month Challenge!


 


What a great post this will be for many! I've mentioned this particular subject pretty often.

We become "engrained" in a certain routine, or something we tend to do daily, or quite often, without even giving it much of a thought.

So, here is my "Creature of Habit" posting...

My daily "routine" is probably fairly boring to most, but for me, it is usually what deems how the "rest of my day" will be. Will I feel behind the entire day, like I am not getting all accomplished as I had planned? Probably! Will I look up and find I have actually done much more at an earlier time than I thought, so I may have a bit of "free time" to write more, and so forth?

My day begins with turning the coffee pot on, even though I quit drinking coffee, I do it because my husband drinks coffee. Talk about a "habit change"? He used to be a morning couple of cups coffee drinker. Now, like my Mom, he has developed a habit of drinking coffee ALL day and even into the evening hours. Weird and strange, but true. From there it is check the dogs water, and check their food bowls, fill them as needed, and put them in their proper places. Since they are both inside dogs, then I have to do a "paper check" clean that up and mop if need be, and put fresh paper down. Okay, then it is off to open all the blinds because I want as much light as possible in our home. So in just about every room, I have blinds I open first thing also so we can have a bit of "light on the subject". I usually join my husband on the front porch to check out the "brand new day" and see how the weather is. Of course TX weather can change within a breath's space, so it could look like it might rain like heck, and in a half hour, be sunny and not a cloud in the sky.

By this time, I am about to "die" for something to drink. Since I don't drink coffee anymore, it is usually iced green tea, with lemon and Splenda, or I've began this Coke Zero, Diet Pepsi, Sprite Zero thing now. I switch back and forth during the day from a "diet" drink to green tea. But, I am ALWAYS with a glass of something to drink in my hand, or a bottle in the car. Due to the Sjogren's, I HAVE to have something to keep my "whistle wet" as the old saying goes.

Then it is onto make the bed. I cannot stand to NOT have the bed made! that is one of those things that would drive me nuts, not to have the bed made up. I get the pups in their places of "habit" on the sofa. Then head to the computer, to check out the weather, see what is happening on Facebook, check out Twitter, and my blog, then I go and begin to weed through the huge load of crud in my email box. Thank goodness we have a "spam" program that for the most part puts the spam mess in a different box, but some of it still slips through, so through that I go, to see if I need to answer emails and so on.

I check the calendar and my "list". I never go a day without a "list" or "lists". Sometimes I may have several lists for different things. I could rarely remember my name if it were not on some kind of list.

Now, onto a "creature of habit" about some things that just drive me nuts. Of course the bed being made is one of them. But, I HATE the phone to ring before 9AM and after 6PM! Unless I am expecting a call before or after those times, it just almost makes me upset. I am one that does NOT like the phone to ring anyway. But. when it rings way too much during the course of a day, or rings too early or late in the evening after we have settled in to watch a movie etc. I get totally disarrayed over the phone ringing. One of my "habits".

I HATE any dish that is sitting not washed. I can't stand to have any unwashed dishes, silver ware, bowls. whatever. Before I go anywhere, or leave home etc. every dish better be washed and at least in the drain rack. Closing the toilet seat is another. One of those things I always do, and just get upset if I find it left up. (This my husband knows all too well!) LOL!!!

I take a handful of certain medications as soon as my feet hit the floor out of bed, and then I take my others about 10 AM every morning, habit that it is, then in most cases, I then eat a bowl of cereal for my morning breakfast, or more out of the habit due to not wanting my medications to upset my stomach. And for the post part it is usually cereal. Sometimes I've bought cinnamon rolls, or made muffins etc. But I am a cereal person, and I rarely ate cereal as I kid. So, that is quite funny and odd now.

Just about every day, I take a "break" about 4PM, and sit down with my pups, one on each side, to watch part of a movie, before time to cook dinner around 5:30PM or so. It is a habit, that I've kept for the most part, unless something takes me away from the house, or I am sick, but most of the time, at 4PM I am with those two pups and on our sofa for about an hour or so.

I always 'Pay" my bills on the 3rd of each month. That is almost "religiously". Unless something is strange as far as how that day falls in the month or so forth, I pay bills every month on the 3rd.

I ALWAYS have a list, my coupons, and my reusable bags when I shop. Never do I go without the very least my reusable bags. The list and coupons are there about 99 percent of the time also.

Every night without question, after we eat dinner, which by the way, is on two of our very nice wooden TV trays in our living room, and we "I" watch the "Nightly News". If the news happens to not be one due to a ball game etc, it just messes up my entire evening. I want to see the news, at that time. It is always on Channel 5 here, and up until "Bryan Williams" had his stuff happen, I always preferred to watch him, another habit.

I NEVER DRY most of my "good clothes" in the dryer. I always hang them on hangers, and let them air dry in the house. Jeans and all. I don't want anything pulled out of shape, or fading, or wrapped around anything, so I never dry my clothes other than on hangers.

I absolutely, unless I am too ill, do some type of writing daily. Whether it is on my blog, Facebook, on my book I am writing now, or even sometimes in an email to a friend, I write daily. I also always as a habit try to do at the very least ONE thing for advocacy. I try and it is definitely a habit, that I do at least one item, and usually it is several a day for advocacy.

I for the most part have a habit of being off the computer by mid afternoon. Unless something is very important, that is when I stop my "computer stuff", do my house hold cleaning, run errands and so on. But by about 2 to 3 PM, I am off the computer.

IF I bake something, which also a habit, I do without fail at the least 3 times a week. I always bake in the morning early. I get that done, and as whatever it is bakes, a cake, pie, cookies, brownies, crumb cakes, or whatever, I bake very early in the morning.

I am in the habit of if there is a shower curtain it must be pulled all the way out to dry. Now with my "glassed in shower" I ALWAYS spray it with shower spray, and open both doors all the way so they will dry out, without fail.

I cannot stand anything on my area rugs. We have wood floors, so we have large area rugs. If there is the least bit of anything on them, I vacuum without fail. I hate seeing those carpets with any thing on them such as lint, crumbs, dog hair, etc.

I am a habitual believer in washing my car by hand. Unless the weather is too cold, or I am ill, I wash the car by hand. I've done that for many years and feel it is much better for the finish if it is hand washed.

I HATE a wet dish towel. I always have two or three out, and I switch them around, so the one that is with the dish drainer is dry. It just irks me to pick one up and it be too wet.

I am in the "habit" of taking care of ALL of our medications. I feel if "I" don't call in refills, or do them through the computer etc. they will not get done correctly. So, I always take care of medication refills, I always do any banking to be done, I always pay the bills, and those are things that I've done as a "habit" all of my grown adult life.

I am in the habit of sending "snail mail" greeting cards to family. I send some online to online friends. But, when it comes to close family, I believe in taking the time to go, pick out the card special for that person, and writing in it to let them know I am thinking of them, and send those snail mail.

I also made it a habit that every year without fail I write a "Christmas letter". It goes out with our snail mail cards, and each year for as long as I can remember I've sent a letter telling others about the past year and what ever I happened during that time.

My "habits" are many when it comes to the routine things in life. It seems since I had a very difficult time when I was a young adult, I have been the "take charge" person in any relationship. I DO it, because whether it is paying a bill, making a doctor visit, buy groceries, and that includes my Mom's things also, I am the one that is in the habit of, I do it. As I said, even with Mom's bills, and anything with paperwork, or making appointments to see the doctor, whatever she has that needs to be done, I am usually the one who takes care of it. I had mentioned above about have issues when I was a young adult. Back then I had two very abusive relationships. One not so much, physical, but more emotional and mental. The 2nd one turned out to be an abusive drama for many years in all ways. From mental, emotional, physical, to not paying bills, or helping to support myself and the 2 kids (I worked full time so usually my own paycheck paid the bills), because the person I was with back then could not keep a job, or spent his paycheck before he even came home with it and so forth. So, at a very early age I decided I would be the one that took charge of most everything that is involved in daily life, from paying bills, to even planning a vacation, I did it myself.

So, creature of habit, yes. There are many other things. I always read on my "new diagnosis" or a "new medication" when that happens. One "habit" that began when my now husband and I first got together over 10 years ago, we without fail, always buy a "Sleigh Bell" Christmas Ornament every year. In fact, we have bought them from the exact same place, and I believe we have at least 11, if not 12 including this past Christmas. No matter what else is going on during the holidays, it is definitely a "traditional habit" that I make sure we get the Christmas Sleigh Bell Ornament by Wallace in fact every year and it comes from a small store in all places Kent, Washington. The first one we bought, we drove down to the actual store and picked it out. After that we moved, so I've had to order them, but it is another one of those wonderful habits, that is a memory maker for the years to come.


Thursday, April 2, 2015

The Realms of My Own Happiness #HAWMC

Check out my true happiness and happy moments below!  #HAWMC


Happiness for each and everyone in this nation, and on the planet for that matter, can vary from person to person, from day to day, and even from moment to moment under some circumstances.

It is a very interesting question that can lead to you learning a great deal about a person by what truly brings out those "giddy" feelings of being totally "in bliss"; in a complete and whole state of all being fine in your little corner of the world.

For me, of course there are different things or ideas that bring me that feeling of "glory", of wanting to smile at the world, and hold onto that "key" situation, moment, happening that brought so much joyful glee to my soul.

If I had to pick one thing, it would be having a true inner feeling of accomplishment. I mean having one of those days, weeks, and so forth that I feel I am totally finished with certain things, that I have completed the "list of tasks" that I set out to do, say for that day or week. Within that time frame, for instance, I started out with an extremely huge amount of items that really needed to be done. Whether it means, a blog post I've really wanted to write, and write well that is also received well, I've taken care of a number of things that needed to be completed at home; such as possibly baking a special cake and it turns out perfect, errands that go by quickly, allowing me to free up some time, having ALL of my household "honey do" lists (when I say lists I mean our own at home along with my Mom's usual list), and all goes as planned, no accidental trip ups, nothing else to go wrong, plans that have been made being completed, and all seems in a place of peace. That would include my own advocacy work also. It in itself gives me those feelings of happiness in the fact again, I've "conquered" the battle ahead, forged through, and completed it. I see also that others have benefited from my own ideas, and I've also been able to spread my own happiness with others. When I find that state of mind, that state of feeling whole and complete, accomplished, with major and minor items, than I am in harmony with myself. I then can justify a "day off" to the Casino with a "daughter and Mom" overnight stay. Or I can justify that I've done a great job, having freed up time to make a trip over to another town, our county seat, and shopping, possibly grabbing lunch, and finding a huge bargain on an item of clothing that I needed, or had been wanting. So, the means is the end result for me, happiness.

When I can take a look backward in a certain day, week or weeks, and watch what my jobs, errands, cooking cleaning, blogging, writing, doing my activist work all come together in a neat package that I feel I could tie a ribbon around and say,
"Wow"! I really did get so much done, had a pretty "stress less" time doing all of it, and I've given others a reason to also say, "Thank you", "Job well done", or I (we) appreciate your good attitude and accomplishment.

Although there are other things such as being able to play my drums for a short while, getting out of the house and going for a "girls night out" with Mom to the Winstar in OK, being asked to participate in something special, such as the "WEGO Activist Writer's Challenge Month", or any type of event or happening that involves me more into my activist, advocate and Ambassador dealings also gives me a sense of accomplishment, thus happiness is always the end result.

Rhia Steele
April 2nd, 2015


p.s. When I speak of accomplishment; along with the completion of a long list of things to be done, I also mean being able to not take to be concerned over my health. I am at least for a small while, free of many of the main symptoms of my illnesses have calmed and quieted down long enough for me to do those things, which brings me bliss in with all I set out to do and get done...

#HAWMC

Wednesday, April 1, 2015

#HAWMC Wordless Wednesday!!! April 1, 2015

Okay for "Wordless Wednesday" the "Official" start to WEGO Health's April Health Activist Writer's Month Challenge



#HAWMC

Here you go, this represents "Rhia" and the things that I LOVE to do!!! Or may I say "did" LOVE to do! I have always been a "music freak"!!! And always wanted to play the drums, the guitar, and the keyboard. I took piano lessons for many years when I was a teenager. Thank goodness I can still "read music" fairly well.


BEFORE all of the Lupus, Rheumatoid Arthritis and Sjogren's... and before all of the joint replacements... my Husband, bless his soul, bought the drums for me in the background!!! They were a birthday present and I just had an incredible time driving the neighbors crazy!!!

We both play and write our own songs. He plays the guitar quite well (or did) also. I bought the blue "Fender" you see me holding and had just begin to learn a bit from him, when my own illnesses hit.

Then, a year ago March 26th, in 2014, while I was in Washington DC in fact at a Summit, he had been in a very serious traffic accident. Ran over by an 18 wheel tractor trailer from behind.... thus his days of guitar playing were also "iffy"....

Well, both of us have been able to play a bit here and there. We just can't go on for hours and hours like we used to... and we both miss it so much...

So, this picture does speak a thousand words for sure... about before, now and what we hope the future may hold... Rhia





Funny Times, Laughing years later, and Wonderful Memories that even 30 years ago are still so Humorous ....

Well today of course is "April Fools Day"!!!! I am sure you, I and many others will have a "joke" played on them before day end.

Actually, ironically for me, mine already happened, kind of..

I wanted to join in on WEGO's Blog post month or as it is called
 "Health Activist Writers Challenge Month"

I had the "list" so I went ahead and wrote my 1st post several days back. Well, I noticed a mixup in "dates" on the information, so I found out actually they start today, but it is with a "Wordless Wednesday", and I had written about a couple of "still funny" things that happened many years back! I thought by the .PDF we needed to write about something funny that had happened to us.

So.. since I've already written it, I'll post it with the Twitter sharing tag for my readers and maybe those at WEGO will get a kick out of it also.

So, here goes, my 1st Blog post for April Fools Day! #HAWMC

April 1, 2015 WEGO Post #1 For April Fools Day - Something, or Someone, or a Time that Always makes you Laugh


Years back, I was about 30 years old or so, we used to go on an annual snow skiing trip to either Santa Fe New Mexico or on up to Pagosa Springs, CO at the Wolf Creek Ski Resort. It was our trip to celebrate my birthday on the 15th of February each year. I always spent months, in fact the entire year planning it, saving for it, and it was always a time I cherish in my life.

One year a couple that lived next door to us, Rex and Jeanie, were going with us that particular time. We had been friends for a long time, and always enjoyed going together. This particular year, we had decided to ski in Santa Fe, NM. I had only been a couple of times then, and it was a bit closer than going on up to Pagosa Springs in CO, so we decided to stay there and ski.

There was a particular restaurant we ate at, and also a particular hotel we always stayed at every year. Staying there and eating at this special Mexican Food Restaurant were “traditions” each trip. This one year we decided to stay at a different hotel, and since we spent most of the time on the ski slopes, we thought we would just share a room and save that money for more skiing. Well, we had left Ennis Texas extremely early as usual. I never slept a wink that night before we left, so we were usually out the door and on the road by between 3 or 4 AM. It was about 11 hours or so to Santa Fe, depending on which route we took. Most of the time we would travel on Interstate 40, so we would go through Ft. Worth and hit I-40 up that direction. I sometimes helped with the driving, but this time the guys changed out, and they did the driving. There was just a magic each year about that trip. We rented a video recorder (this was back when they were huge and weighed a ton), so we had most of the trip on “record” to remember the rest of the year.

When had arrived in Santa Fe, just about noon, as our plan usually was, always about time for us to eat, so we went to the Mexican Food Place and had the feast of a lifetime. Between a couple of margaritas’ or a “cerveza” we about laughed our way right out the door. All of us were a bunch of comedian’s on the slopes and off during these incredible journeys. Each year seemed to be more special than the last. So, we decided to go back to the room, get unpacked the rest of the way, and possibly go to the downtown area to see all of the wonderful artwork, bead work, and just awesome pottery that the people there in Santa FE always had out on the “square” around all of the beautiful buildings.

Jeanie and I were unpacking and talking. All of a sudden we didn’t hear the guys making jokes and cutting up, so we turned around and both of them were totally “sacked out” asleep, one on each bed. It was already funny enough, because both of them began snoring in “tune” together. The more they snored right in tune with each other, the more the both of us got tickled. Well, my “then husband” sat up in the bed very casually and said,  “What and the heck are you two laughing about? What is so darned funny?” I about busted out laughing again and said you and Rex were “snoring in unison”. He looked at me very seriously and said,“NO, we aren’t. We are in Santa Fe, not “unison”! I cannot tell you how funny that was! WE made fun of him the entire trip, constantly asking him if he had found “unison” yet and repeating what he said. It was just hysterical.

So, that whole ordeal became a joke between all of us for years. Every once in a while we would ask my ex, “Hey have you seen unison” lately! He would just turn red in the face, and get almost mad at us for making such fun of him.

On the very same trip, the 2nd night there, we decided to try a new place to eat. I had never really eaten much “Chinese Food” or any type of Asian cuisine. So, we decided to try a Chinese dinner for a change. We went in and the place was not busy at all. But, this was in the middle of the week, so we figured they just weren’t all that busy because of that. It was fairly dimly lit. But, it was adorned with all of the Asian decor. I was quite impressed with the “ambiance”.

Anyway, an Asian gentleman came to take our drink orders, gave us menu’s and of course I had no idea about that type of food. I had only eaten this type of food possibly once or twice, and everything on the menu sounded good. It always did that first night after being on the mountain top all day long. Usually all of us were starving from all of the activity of the day. Anyway, we each picked an entree’ and the guys asked about “fried rice” and if it came with the meal. Well, I am sure quite sure if the woman taking our order at the time really understood the question or not. She made the comment about each would get a side of “fried rice” of our choosing, chicken, shrimp, vegetable etc. So, above our regular orders we asked for “one extra bowl” of fried rice on the side. I think most of us had chosen something with noodles in it, or figured the way she talked the “side” with the meal we ordered would not be all the big.

So, she took our orders, and it wasn’t long until TWO of them, her and the gentleman who had seated us came out with the HUGE serving tray of “many” plates and bowls of food. At first we thought they had mixed our order up with another group that was there. But, no it was “our” order. So, they begin loading our table up with the plates with the entree’s on them. Then here comes all of these “extra bowls” of fried rice!!! They not only brought the “side” order of rice with our entree, but they also brought EACH of an a huge EXTRA bowl of fried rice on the side. In fact our table was almost not big enough to hold all of the plates, bowls, and everything they had put in front of us. We sat there almost dumb founded, but thought well, that is what they thought we ordered so that is what they brought us.

We began eating, laughing, talking, and spent at least an hour just tasting the different dishes all of which were delicious. Yet, even with all of us hungry, and the guys could eat everything in sight usually, we still had bowls of rice left over. So, it was about time to settle up the bill and leave. The woman came out, refilled our tea glasses, and then looked up at us and said just as politely and calmly as could be “You want more fried “lice”?” Oh good gosh, all four of us burst into tears laughing. Here is bowls of rice there was no way we could eat, and I even thought about taking some of it back to the hotel, but I knew there was no way we would probably eat it that evening, so we decided not to take a “doggy bag” with us. But, between us having ALL of those extra bowls of rice, and her “Asian” accent; then asking us if we wanted “more” fried rice was almost too much. We just about wet all over ourselves going out, and for the rest of the trip we kept asking one another “Do you want more fried “lice”?” Again, between the “snoring” in unison, and now the “fried lice”, we had the trip to remember for a lifetime. In fact, it has been something like 20 plus years since that trip, and still to this day, my now husband and I get a kick out of making a silly comment about, No, we aren’t in unison, we’re in Ennis!”. Of course, we had to wonder if that entire kitchen in that Chinese restaurant were also hysterically laughing at us for ordering all of that “extra fried rice”? They had to have just been as tickled at us as we were. It was very obvious that we had not ordered Chinese food very often.

There were many “moments” during those ski trips each February that I will truly cherish for a lifetime, and can’t help but grin when I think about them. Now, I am not able to go snow skiing. Due to the replaced knees and shoulder, the Lupus, RA, Sjogren’s and chronic pain issues, my snow skiing days are well past me now. But, the memories, the laughter, and some of the things that happened back then will last a life time.   Rhia Steele 4/1/2015