Stress Awareness Month - WEGO Health #HAWMC Writer's Challenge April 19th 2015

Definitely a great question for ALL of us that have to contend with a stressed filled, everywhere you look and feel world! Daily stress producing items are all around us. Whether you are "chronically ill or in chronic pain" or not, the news and medical world tells us that our daily stress levels are off the charts. This also means that stress effects us in so many different ways, especially when it comes to your physical and mental health.

Then you take all of that into consideration, jobs, families, travel, homes, cars, kids, and just what we see in the news daily, is enough to cause us an insurmountable bunch of stress. We have known for years that stress contributes to heart problems, it definitely effects our immune systems, allowing things that normally not make us ill, to sometimes makes us more ill than we think.

Now let's add in doctors visits, 15 or more medications a day, feeling overwhelmed already, yet due to chronic illness and the pain that comes along with it, the stress levels can be way over the top of the glass, and pouring down all around us in a puddle. Just having to deal with a drive to a doctor in Dallas, maybe two in a weeks time. Making sure all of my medications are filled properly, and with me so I don't miss any. Not feeling well some days, either with some type of "flare"; whether Rheumatoid Arthritis, Lupus, Sjogren's, and the list continues. Add those onto trying to keep a job, do errands, take care of a home, a yard, a car, buy groceries and prepare meals, do laundry, and all of the 1001 things that can pop up at any moment, to distract us from what else we are doing. Then our bodies all too often "revolt". So, now I am dealing with a huge amount of fatigue, severe headaches, my hips and lower back hurting, perhaps like last week for me, having the procedure done on Thursday - even though a "good procedure" to hopefully help reduce the horrid pain in my lower back, hips and legs, was still "stress". So I get up on Friday, with bright pink cheeks, feeling like a train had run over me, seeing everything piling up I need to do, and guess what, here is a flare. I would "assume" a Lupus flare, due to the pink hot cheeks and nose. That all too familiar "Lupus "The Wolf" Mask" we get when one of those comes on

So, I've spent over a week at doctors offices, having that procedure done, then coming home to know I am behind on everything. Now I feel lousy, the weather brings on a new set of stress on it own, and I now have a very low potassium situation they discovered last week when I had the Transforminal Epidural Steroid Injection done in my lumbar spine. My potassium was at an "dangerous" low. Most of the time at what mine was, and they even checked it twice, I probably should be getting IV Potassium to try and get it back up a bit, then follow up with pills. But, I didn't hear from my PCP even after calling at 9:00 A< Friday. So, I followed up with my Cardiologist, who immediately called in a script, told me to take two of them for two days, then one a day, and come in on next Friday so they can check the levels again.

Now, after all that being said, "How do I, did I, deal with all of the stress"? My first way to "deal" with stress is "listing" and writing down, what is "MOST" important to get done quickly, and what may be able to wait a day or two? That helps me a great deal, to literally "write down" a list, and prioritize things. Then I take stock in how I feel mentally and physically. If I am feeling very lousy, then I know I need to do absolutely what has to be done, and save others for later, when I feel better.

From there, I allow "time for me". Even though my to do list might be long, I still need to be able to either go outside, and do my walking. I enjoy baking. So, for me going into the kitchen and making a pie, cake, cookies, or whatever I feel like I might enjoy baking, I do that. There are days, that I may have to do one or two things, then sit down at the computer and write, or take an hour to watch a movie with my two pups. I also very often find if I go over to my Mom's, and just spend some times away, where I can talk, and "gripe" if I want to, Being able to express my stress is critical. If I can't write it down, or say it, or find some type of avenue to be able to "purge" some of the bad stress, then I really find myself unable to get much of anything done. I am too wrapped up in what I CAN'T, thus what I can does not come to me, when I don't just take that walk, talk to my Mom, write on my book, or post on my blog. Summer as I had mentioned in another blog post earlier in the week, tends to help. I can open up my home, and let the fresh air in, get some light streaming in, and I have a "renewed" feeling, that tends to be a great deal stress free.

Being ill with so many of these diseases, syndromes, and such do add a HUGE amount of stress in my life, but my husband, Mom, and others can "feel" that tension in the air. So, between all of us we try to keep me in check with stress. It may mean a day trip to Oklahoma and the Casino. Which in saying that, we are LONG overdue to go. It has been several months, possibly about 4 or more months since Mom and I made that 2 hour journey into "freedom" for a few hours at least.

Just a day trip away from it all, is an incredible way for me to get back to the matters at hand daily, and lead my body and brain into a new perspective.

Writing has always, and will always be one of my biggest ways, that I can "purge" out the stress, remain half sane hopefully, and try to carry on up that "mountain" always reaching out to attain a goal.

#HAWMC

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

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

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

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

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

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

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

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

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

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


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

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

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

  "Life's Too Short! Eat Dessert FIRST!

 

 

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

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

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

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

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

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

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

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

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

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

Happy Summer to ALL!!!

#HAWMC - WEGO Writer's Challenge!

#HAWMC WEGO Health Writer's Challenge April 16th 2015 - "Life Goal" - Can you Achieve it ot possibly more than one -

The one goal that I've been working on now since I was about 15 years old, is to be an "author and writer" and have my books published.

That had been a goal that I had committed myself to, back then even as a teenager. I guess I really never gave myself a "time frame", but of course it is something that I want to do, and be able to see if what I write helps to make a difference in someones life.

Of course a "portion" of that goal I have already achieved. I had the honor to have not just one, but two of my books published in 2013. They came out about months from one another. Those were poetry and prose. And each time I hold one in my hand, I am so thrilled at the accomplishment I achieved.

Yet, the #1 goal even in the author and writers achievements, is to finally put all of my "life's journey" through the many things I have done, endured, and certainly will have a up close and personal look into my chronic illnesses and pain. I am working on that book, already have "named" it and got a "cover" for it done. I've gotten many of the chapters already completed, so I am on my way to hopefully completing this goal at the end of 2015 or early 2016. I just feel between my blogging, my activist, and advocacy role, and being an Ambassador, I am "giving of myself" exactly what I am supposed to be accomplishing. But, this book is what I hope to truly make others know for sure, they are not alone, they are not crazy, and all they experience it truly not "acceptable" as far as health goes, and we must try to move forward, to achieve victory over Chronic illnesses, such as "autoimmune diseases and others" and chronic pain.

I never fulfilled my greatest "desire" or goal that I had thought might happen very early in my life. That was to be a nurse. I also dreamed of being able to write my own songs, the lyrics, music, and sing them too. I knew a long time ago, I would never be the next "bright and shining" star of the music world, but I can dream about it.

Of course, I've had to "redo" my "course" several times when it comes to completing this 3rd book. I find myself taking on way too many other things that to me are very important. When I allow that to happen, then I have change my course, and get back on track of what I truly feel is the most important, which of course is this 3rd book. I have already decided there maybe yet another to follow it, and give more insight to things I dealt with in life.

        

#HAWMC

WEGO Health Activist Writers Challenge!

 

#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!

WEGO Writers Challenge for April 2015

Sharing" Anothers Bloggers Post - and the Pain that we often fall short of talking about... that relentless endless, intractable PAIN

The link to the post is at :

https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/

It is from a "Creaky Joints" post...

RA pain’s rock bottom: NOT a ‘pain made me a better person’ story

 

and it is by: 

Kat Macfarlane

 

 I was so truly amazed with this woman's "honesty" about this type of pain. As I "crawl" through some of the exact same pain with my hips and lower back, and legs, I just want to scream, cry, shout, cuss, say everything my head is thinking, yet not want to offend anyone. So, I don't walk outside and shout, dammit the hell I HURT!! WHY Can't this just go away??? Why the hell do I have to live day after freaking day like this...... and so on... it is MUCH MORE Obscene is my mind for sure...

Dealing with Chronic Diseases and Chronic Pain that seems to steal your entire life...

Sometimes I feel as if I write the same old song and dance, over and over again. Yet, as I was glancing as some email newsletters I get, once again for the Thousandth time, there it is in my face, talking about not being able to travel "too far away from home", or how these illnesses take you so far down in fatigue that the simplest things you used to be able to do, now are like monumental achievements.

I always try and bring myself back to "Okay, it could be worse"?! Well, what does that mean for any given person... worse as far as I am not in the bed 24/7/365? Worse that right now I am "well enough" to not be on the sofa for many hours of the day? Worse as in, I can still walk without a cane or a walker, I still have my eyesight, I still can talk, and okay all of that "same old stuff". Worse as in, gosh there are so many others out there that have it "worse"? That is dependent on who is viewing it, at any given time. For one person that might mean a "bad" day or two.
For others it may mean they had to cut a vacation down and come home a day early, or cancel dinner plans for an evening, or decide to order take out because they were too fatigued to cook. I've "entered" a couple of different items for this month. One is sponsored by the Sjogren's Foundation, due to April being Sjogren's Awareness Month. Each day we must think of "ONE" word to describe "Sjogren's". The other sponsored by WEGO Health, is April is "Writer's Challenge Month". Each day they give us a "prompt" and we are to write about how that particular thing effects us. Some medical and some just life as it is stuff.

Over the past 8 or so years, once all of the autoimmune issues came to light, I had high hopes that with a more "specific" diagnosis (or more than one) between the doctors, myself, medications, and taking care of "me" would mean finding a much better quality of life in my future. Now, each day, I come to terms with the pure and simple truth. Unless something miraculous happens in the thorns and arrows slung at all of us with these hideous illnesses, I nor anyone will ever find they have a "better quality of life." I think we "fool" ourselves into thinking, "we must remain focused on the good, on the "half full" rather than half empty glass. We must think that against all odds, look how many others have out smarted all types of "basically deadly" diseases, and are here to witness to us that it can and does happen.

Yet, me putting on that happy face, yet inside deep inside both hips it is like a ball of fire inside, churning, aching, burning, and how do I "ignore" that kind of pain? Then I find out last night, and I mean very late evening, that after waiting 2 weeks to see my orthopedic doctor who has done both knee replacements, and much more now does NOT take my insurance? And the woman on the phone was an absolute witch. When I began to ask about me paying for the visit, she snapped back at me, an office visit is "$175.00"! Well, in the first place they should have KNOWN right away, and in fact when I called and made the appointment, she even looked at my file and saw that I had the insurance and never uttered a word that he was no longer taking it! Well, that leaves me in a world of hurt, now over 2 weeks. If they had told me that in the very beginning, I could have either tried to find another orthopedic doctor, OR just paid cash for the visit and the injections.

I was still so totally upset by the entire ordeal, that I called his office again this morning and spoke with HIS nurse/office manager. She told me the "visit" for me since I am an established patient is $75.00, then the injections are $100.00 each. So, the lady from the entire doctors building didn't know the circumstances, and didn't realize I had been seeing him for many years. I can also say that if I had been able to get hold of him, he would have charged me less, and did the injections. Him and I have been through several situations involving my own self, and then a surgery he did on my Mom, so he is well aware that when I ask something or say something, then it is something I am extremely concerned about.

Then you take this new stupid insurance, which means if I see another specialist that I've not seen in a long while, then we have to go back to square 1 and get a "referral" done to satisfy the insurance company. Fortunately my neck and shoulder orthopedic surgeon IS taking the insurance!!! So, even though I have to wait another week, which sucks because today is more than pain, hurt, despair... almost intractable pain in my very lower back and especially my hips, that even higher on my waistline hurts, at least I can see someone I know and trust. He has a "jackass" bedside manner. But, if you overlook that, he is EXCELLENT or more than that, THE VERY, VERY BEST Orthopedic Surgeon in the US, as far as I am concerned.

When I was first sent to him due to needing a complete reverse shoulder replacement, of which not many specialists do them, we kind of got off on the wrong foot. He is one that prefers an "less educated" person, as far as their medical situation. He is not thrilled over someone like myself, that comes in, with all of my own home work done, and knowing just about what the issue is with me, then telling him. He is not very happy about a "patient" that he feels thinks "they know" more than he does. Of course I don't BUT, when it comes to myself, my own surgeries, illnesses, and all I've been through in many ways, I am almost an "expert" in some things with my own stuff.  Well, when I went in and seen him for the shoulder, gave him the "low down" on the entire mess I had been through, where the pain way, how many other "scoped" surgeries I had, and in the last my other orthopedic surgeon told me that there was "nothing else" their to repair. The next step HAD to be a "reverse shoulder replacement". And it took weeks and weeks to find one. Then same with my neck. Right after the shoulder surgery, within 3 months I began to have once again a "similar" issues with my shoulder blade. As I again had done, researched it all, and the pain "seemed" to be coming from my cervical spine. Well, he did a special CT on it, since I can't have MRI's, and that CT was terrible. The tech that did it, was not in the right place to do business, and he really was NOT elated at all. He "went off " on me, stating just because I do research online, does not make me an expert, and he really got pissed about my "input". So, I am not sure what happened, but within a week or so, he decided my "theory" maybe right. Since my other orthopedic problems never do "show" on CT's, MRI's... whatever kind of "scan" they do, it is always MUCH WORSE in that joint, than what it showed. So, that was my continued premise. He decided that I could be right, thus he set up to have me on the operating table, and do a 4 level disectomy, and also fusion to at least two of them.

Well, as sure as I am writing this, for the most part, what I had "said" and drawn in my own conclusions, were almost to the "letter" when he opened up the neck and began to see the issues. That is why I say, he is an excellent physician, one of the very best in orthopedics, yet his bedside manner sucks... and once I could look past that, and HE could ACCEPT that in some ways I COULD BE correct, it worked out fine.

Thus, having to wait yet another over a week to get some relief sucks.On top of everything else, I am not so sure about this "forminal" lumbar injection that is supposed to be done Thursday. Now I found out, it is not the "anesthesia that they concern themselves with, as far as the patient driving home. It is the epidural injections in themselves. In that part of the spine, it may make my legs feel a bit "heavy" or numb a bit after its done. Not everyone has that, but some do. Thus the reason not to go alone. But, when you have no one else to drive you, what the hell do you do? Forget it? I mean Mom and Jim both can go, but when it comes to driving, that will be me. Neither of them cam drive to Dallas and back.

So, now I also know this orthopedic doctor could also do those injections too. So, do I hold off, and then have then done later by him...


These are the very examples of why life deems itself much, much more frustrating and difficult when you are suffering from chronic illnesses and/or pain... ALL of it is a "PAIN" in one way or the other....

#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 - "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

#HAWMC   - 

Wego Health Writer's Challenge Month