#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  

 

#HAWMC

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.

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#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

#HAWMC

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

WEGO Healths Writers Month Challenge #HAWMC

"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

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