Tuesday, June 11, 2013

72 Hour Long Days With All of The Energy to Go with Them!???

I need days that are 72 hours long! They also must come with energy enough to get through the entire 72 hours so I can do everything I need to get done! Weekends are not long enough, the weeks are not long enough either. I run out of time, or usually run out of energy! Yesterday I had so much to do. I needed to do lots of cleaning up in the yard, both sides front and back. I needed to trim around trees, bushes, the plants, the flower beds. I needed to rake up all of the old leaves from the North side so we can plant some bushes at the fence. I did get the limb off the house! Yeah! It blew down some where I could reach it with my rake. So, I got to grab it and pull it down. Got it all just about down to trash can size. Then all of my plants take SO MUCH WATER! It seems I am already watering them twice a day! And HOT has not even arrived yet. I really needed to bake something but I never got around to that one. By the time I made the bed, walked, got outside and did all the things out there, then did a couple of things inside, I was already feeling like I might drop. I had to vacuum, clean the bathroom, and really needed to do much more. But, I decided I had to go pick up those other plants for the fence area, and I needed a couple of things from Wally World. So, dammit I braved that store on a Saturday, which I usually always AVOID on the WEEKENDS! IT was full and people rude as usual. I made my way thru picking up my plants first, then going inside. I did find what is called a "Mexican Petunia"! IT is the most unusual and beautiful plant I have ever seen. It is so different from other plants like it. It has a thick stem, and the leaves are a dark almost velveteen smoky color. The blooms are a purplish color. I had never seen them before. I just had to have at least one, so I got one of those to see if I could make it live. By this time, I had been in the sun only a short time, but you know me. With the Lupus, I was already feeling it. My energy level was dropping fast, and I could feel the rash on my face getting worse. I did have some lotion with sunscreen on earlier, but I know I had already sweated it off. I went inside quickly, and picked up the other couple of things I went for, except my medication. Long story, but one of my heart scripts last month I take was the one that Wal-Greens swore they could not get.... the company that makes it had taken it off the shelf, and the pharmacist said they did not have any idea when it would be back. I panicked and even called my doctor, thinking no one could get it. Well, I call Wal-Mart and they had it, no problem. So, against my judgement about their pharmacy I had it filled out there. Or course now as usual the lines are long at the pharmacy! So, I refused to stay and wait. I have several left, and thought to hell with it, I'll pick it up during the week when hopefully the line is not so long. By this time I was totally drained. I barely was able to drag myself to the car again in the heat, get my stuff in it, and get into the car to come home. I came in, watered the plants, got stuff put away, and even though I had not nearly gotten done what I wanted to for Saturday, I had to change my clothes and get on the sofa. There was no way I could do a thing else. I was just totally drained of all of my energy. This was early afternoon around 2 or maybe a little later. Anyway, I really never got much else done. Then when it gets close to time to go to bed, I am wide freaking awake. I am exhausted, but not sleepy. Thus I was up and down all night, finally for fed up and slept on the sofa. I made the dogs come out with me so they would leave Jim alone. Now here I am up at 5am. But by the time I do a few things this morning, which we have all these plants to plant and pot, and a billion things to do, I again will rampantly be lacking any stamina again. Having Lupus or any of these illnesses that just suck the damned life out of you do suck for sure. I am so sick of of feeling so sick.
 
 
Did someone mention a "Type A" personality? Well, some may say that about me... it is not so much perfectionism that I seek in my life so much, but more that I want to LIVE my Life! Rather than feeling crappy. tired, or constantly having someone that I know they "love me", but bug the hell out of me saying, You should not be doing, this, that or the other! If I want to plant 300 plants in my yard and have to water ALL of them twice a day, all summer long, I should be able to! IF I wanted to sit on my butt in the A/C and watch movies, then good for me, yet I want that to be a "decision" not a necessity! That is what those that don't have to deal with chronic pain and illness have such a difficult time getting. We don't want to "have" to or "not have to" do anything. We want to be as normal as anyone else. Be in the sun, reasonably, plant flowers, have a garden, clean our homes, go on vacations, each and everything someone who is NOT chronically ill is able to do, we want to be like that. Now, since Lupus, RA, and the other host of chronic pain and illnesses have decided to become my "bed buddies" and room mates, dammit, they tend to try and dictate what you are going to do at any given moment. 
 
A good for instance of this is this latest medication the doctor put me on for nerve pain. I was all for that. Anything that might help to stop more pain, sure let's give it a try. So, we did. The very first rattle out of the box, I feel tired, more tired than usual. And, I was on the first of the very lowest doses. I am supposed to titer it up 3 times what this lose dose is. If I am already feeling "whacked" out now, how the hell can I ever take enough to see how well it works? Well, I endure the 3 pills a day for two weeks. I thought okay, maybr I jut need to give it more time. So, I go 3 weeks on the low dose. Last week around the end of the week I started to get a bit more brave and try two pills, 3 times a day. Hell I took the first two that morning and I was non-functional the rest of the day. I was just so fatigued I could barely pick up my legs, I felt as if I  was stumbling around , just out of it. So, I only took 1 for the other two doses that day. I braved it again the next day, same thing. Now I am beginning to get frustrated with all of it. If I can't get the dose high enough to see how well it works due to the fatigue, then what is the use? But, I would like to see if it does work, due to the fact the nerve pain is really bad at times. Thus it is damned one way and damned the other. Of course a piece of me figures, okay maybe I have a flare. If that is the case, then I would be fatigued and the medication may make the flare and fatigue worse.   
With any of one these autoimmune illnesses you never know what one thing you do, or don't do will cause. The number of symptoms seem like go on to an eternity and back. Fatigue is a huge one, for all of them. Whether it is RA, Lupus, FM, Diabetes I, or any of the other one of hundreds of them you can name, they come with similar and also their own set of symptoms.   
 
I realize I have been "absent" for several days... I have been writing, and as you see above, things I have the intent on putting here, but got side tracked in the middle of it all. We are all enjoying our spring and summer that is upon us. Even though we have more daylight time, it seems we have, or I do anyway, "less time". I believe I am so trying to cram 72 hours of days into a 24 hour one, that I am not dealing with it all very long.
 
I am continuing slowly on the book. I have been doing a great deal of "outlining" and thinking about what I want to put into it, what I want it to sound like and just how I am going to hold the readers attention, without it being boring.  "TMI" and that will mean way too detailed, but lack of information will mean nothing making sense. Thus there we are back to the word, balance. 

I am dealing with fatigue again. I have lots of energy until about noon. Then all of a sudden, I am just worn out. Sometimes even before noon. Right now, I feel as if I could fall asleep. I got up about 5:30 am, which is late for me. I am usually up and about by 4 or 4:30 am most mornings. Then by 10 am I am so tired I feel like I am just going to fall out of my chair. So, then I get up and get to moving, so I can stay awake. Here is another excerpt from one of my many Facebook postings... Gosh Julie... ALL you said is definitely very true! :) I appreciate your wisdom. Your wisdom from life. Your wisdom from living. Your wisdom from accepting and being brave enough to know you must stand up and know when to say NO... to doctors, to medications, to all that keep "life" away from us at times. You hit the nail on the head for me. I DON'T want to miss "life" because of pain, BUT I don't want to miss life because of the things that take away the pain either! Those pieces of us, of how we live, that are damned if you do, and damned if you don't. I have spoken lately about how my "Higher Power" has given me an innate ability to somehow "know" I still have time "here". Now how much time, is time? Well, that I am not sure of. What time is to us here, may certainly not be the same time as in heaven. But, I felt that my "tasks" here I have not completed, thus when I do that, then I shall move onto Glory Land. Then of course, no pain, no strain, no suffering, no worry, no medications, no bills, insurance, doctors, and arguing about any of the "human" daily things that keep us from living more often than they should. Sometimes I forget to ask for guidance. I guess somewhere in my stubborn mind, I think I am supposed to do this without being helped while here on Earth. Yet, just as it is said, "Knock and the door shall open, Seek and you shall find"... I forget to just "knock" or even ask... then I am frustrated as to why it all has to rain and reign on top of my darned head and shoulders... yet I make it that way. If I could let go... and Let God... I would have less mess to deal with. We are HUMAN! We more often than not, do not get IT! We don't feel we can let go. We forget to just ask for help. PRIDE, one word that we sometimes have way too much of... PRIDE.. gets in our way. My Mom has a neighbor. They have been friends now for at least 45 years! They were friends when I was very small. The neighbor has always been kind of an overbearing woman, that feels she must DO EVERYTHING for everyone! He family, friends, strangers, whomever. She has been that way since as far back as I can remember. She wants others to DO as she SAYS! Now don't get me wrong. This lady was almost like a 2nd Mom to me. She taught me so many things when I was younger, that I am so very thankful and I will always admit she is a wonderful person when it comes to that. But, she has TOO MUCH PRIDE! She will admit it. Her and my Mom for some reason, and honestly I have no clue to why, but they COMPLETELY STOPPED TALKING over 2 years or more ago. I honestly feel it is because I moved home when Dad died. Thus I "took over" much of the things that the neighbor had been helping Mom with until I could move back. Which I am thankful for. But, rather than "teaching" Mom, she was telling her what to do, how to do, and when to do... which Mom needs to LEARN as much possible to do for herself. I teach her, then the things she just cannot handle, then I do. Anyway, the neighbor I feel got pissed because I came back, and then Mom did not "need" her running her business. So, I feel that is why she suddenly got "mad" at Mom. I mean any of us can almost run her over in the store, and she will not say one word, even if you say hello first. Her adult son came over and asked Mom to try and "make up" with this neighbor last week. The neighbor had been in the hospital, and her son that came over with his wife, actually had a bad stroke several years ago, and he is in a wheel chair, and cannot even speak that much due to the stroke. But, he was so upset about this whatever it is between his Mom and mine, he came to ask Mom to go over and see the neighbor. He actually said to my Mom, that his Mom told him " She is too PRIDEFUL" to go to my Mom first! How insane is that??? Hey all of us have pride, but to not be able to even admit when you are wrong... and to think the other person must come to them first... I totally think it is stupid, but Mom did happen upon her in the pharmacy two days ago.. and Mom SPOKE FIRST. The neighbor actually after 2 or 3 years of not one word, did speak! Now what will happen after, who knows... but the moral is that I cannot fathom having so much pride, that I could not admit hey, I am wrong, or even if I were not, I would try my best to resolve the issue. Thus, pride, envy, jealousy, all of them just cause nothing but more hardship in our lives. Sometimes I know I feel like I have to be full of pride and NOT admit my pain and illness. I want to hide it, pretend it does not hold me back, but it does... I cannot truly type this and have all of the issues I do just typing it without admitting I have an illness and more than one that cause me a huge amount of pain and suffering. We have to balance all of it out, in order to make our lives whatever they need to be. Whether that mean being on the sofa 5 days a week, or being able to take some medications that give me the ability to get up and do some of things that I want to do and can... all tough decisions... my hardest thing to accept is all the time I seem to WASTE, on stuff like insurance, doctor bills, pharmacists and stuff where people do not do their job right. Thus I have to do their job for them. Those are the things that drive me to a point of almost jumping off the house in insane moments. We do not have lots of time, thus certainly what I do have I don't want to waste it on trivial crap that truly should not have to be such a nightmare at times...  and onto getting into another day of all that needs to be done... I am just not sure "which end to begin" with?
                                                                                                                                                                                                                                                                                                                                                                                                                

Sunday, June 2, 2013

A Wonderful Article about "Complicated" Chronically Ill Patients & Doctors Feelings about us...

Here is the first part of the article and the link will take you to the entire page:
Dear Patients:
You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
  http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/
  Letter to Patients With Chronic Disease
 

This is MY response to the posting in FB":

This is an incredible article! My husband and I have spoken about this many times. Our doctors are "humans"... and we are extremely complicated types of patients. There is so much that can be wrong with us. Plus I do go in often almost feeling as if I "know more" about my illnesses than the doctor does. So, I try not to let that show up because I don't want to offend the doctor I am with. Now my PCP loves the fact I know a great deal. But, he is young. He started seeing me when he first opened his practice, and he is also the one that really "diagnosed" the official Lupus diagnosis. So, he has been my doctor for long enough, he accepts me as I am, and understands me for the most part. I always try to keep all of my doctors informed. If I have something like surgery, or special tests and so forth, I make sure my PCP, RHEUMY and Pain Dr. All get those documents. At least they are in my file. So, they know that before they walk into the room with me hopefully if they have had time to review my file for a few moments. But, this is really incredible for a doctor to come out and tell us these things... I wondered why a couple of my doctors, especially SURGEONS acted almost Pissed at me??? But even my PCP said it is because surgeons NEVER want to be wrong... thus they certainly do not want a patient acting as if they know anything. I had that happen with my last shoulder and neck surgeon. I went in with all of the knowledge of what I felt was wrong and what type of surgery I needed. Mostly because my other doctor had already done surgery on the shoulder twice, and told me it was a mess and what I needed done. Well, that hit this doctor ALL WRONG! He acted pissed at me, and basically told me I was stupid. I even decided he was so rude I would not go back. But, he did have the knowledge needed to do the highly specialized type of "reverse" shoulder replacement I needed. Not many doctors know the procedure... so I did go back, and then I had other issues that happen to caused pain in that same shoulder blade. Well OMG I went back and he just about blew a fuse thinking I may be saying he did the surgery wrong, or something was wrong with the surgery...hell I was not at all.. I just knew something else was wrong. He really turned into a jackass again, and finally "we" with tests etc... found out the issues were with my neck... so he "fixed" my neck. After all was said and done... he basically "admitted" I was right. That what I said about my shoulder and my neck were both pretty right on... well I knew so much already about other issues, and years of surgeries, and doctors, and so much research... of course I felt like I kind of had lots of knowledge about what was wrong... but I never wanted for him to think I was being rude and trying to tell him he was wrong. Now I understand why he acted as he did. But, at first I just thought he was a jackass with no bedside manner... again thanks this is a great article...

Saturday, June 1, 2013

Information of ALL PROFITS from the Sale of both my books...

I wanted to give a quick shout out to let everyone know that ALL of the PROFIT from BOTH of my books - "Ramblings of A Seasoned Soul" and "Time Tattered Musings" will go to the Lupus Research Institute. I thought some may want to know my plans are to not keep anything made by the sale of the books. I feel if I want to help others with these life altering illnesses, besides my writing, supporting the Lupus Research Institute is another awesome thing I can do.

You can see my Author Page, along with both the Paperbacks and the Kindle Versions of both books at :

http://www.higherpowered.com/rhia_steele



Thursday, May 30, 2013

Sometimes SH*! Just Happens...

Why is it you get plans made, and all of that seems to go South for the summer,  I guess! It's been that way for me all week long. I get my day planned out. Get up early, do my walking, check on the plants, and had trash day today. From there, everything I had set my mind to do, just fell off the wagon. It was cloudy. So, I felt I didn't want to wash rugs and then it rain on them. Then the sun came out! So, I go put the one that is still wet out to dry and it gets cloudy again!! My plans were to wash some rugs, but I had planned to play catch up here and write on the 3rd book. I wanted to let those know that may have read my Facebook post from yesterday, kind of what the "jealousy" issue is. Mainly, it seems very "coincidental", that every time I write something, or I come out with new poetry, or talk about certain subjects as far as Lupus, FM, CFS, RA, MS etc, this person just happens to say something also. This has just been going on and on. What I don't understand, is why? Here or on FB or where ever you want, you can have a group, a blog, anything you want, and tell people anything pertaining to any and every subject in the world! Mine may suck! So, why would someone take my stuff, or if I write a book, they have to suddenly make a huge writing of something and tell all about it!? Do I honestly care? No, it is a compliment to me. But, I cannot fathom "JEALOUSY"!!!!! It is one of my main pet peeves.!!! I been there , done that with a few women for bosses, that could NOT stand anyone that may in any way do something that could lift them up the corporate ladder. They were so damned concerned over greed and jealousy, that the job was not the issue. I went through it and I took that damned abuse for too long. So, for me, doing something such as this, is being JEALOUS! Of what???? of Me!!!??

So, I was put out yesterday and I posted in general my feelings on the subject. I never mentioned a word that would point fingers, I won't do that, never. But, what I wanted to do, is whomever is reading this, if they feel "guilty", then guess what??? It goes without saying a word.... I didn't even say they are on FB! I write here, and I write other places, and it could be someone more locally, that happens to read my stuff. Anyway, now that it said. It is done and over.

Back to my freaking schedule! I feel like heck. I have a horrid sore throat. I am still running around my house and yard in an old crappy shirt and a pair of boxers! I have not even found time to change... I noticed our sheets seems a tad "off"... so I washed them, which laundry was not in the plans today. Picking up limbs, and chasing the neighbors new little puppy back to its house 50 times a day gets time off the clock. The puppy is tiny. I guess a "tea cup" Chiwauwau...and even though they have the fence appearing like there is no way "Gi Gi" and it is a boy, LOL...could get out... guess what, he does!! Now the funny part is what happens next. The dog will not let anyone pick him up!!! LOL!!! He just runs round and round like a game to him, and just gets close enough, but not enough that you can catch him. It is hysterical watching them chase the puppy around the yard. Well, then he started coming over here. Every time now he hears my voice, he comes running. At first he did me the same way, then I could walk to their gate and he would go in for me. So, at least I could make it that far. Well, then after a few days, he started letting me pet him and pick him up!!!! OMG! Here is the NEIGHBORS puppy, and comes to ONLY ME!!! HAHAHA!!!! Okay, today he did let Jim pick him up once, but for the most part, me... and not even their kids. He will not go to them. I feel sorry for them sometimes... but then it is just too funny....

So, after chasing the dog several time home, trash day, then finally washed two rugs, washed the sheets and my favorite blanket, tried to decide if I should make something sweet! We finished off that awesome, if I say so myself, Poppy Seed Cake, with chocolate almond frosting, and it was delicious. Then I wanted to clean the floors where the rugs go. Of course, from there this, that and the other needs to be cleaned, put up, or whatever may happen in a day at our house. Even though I went through all of that, I can say I did get some WRITING DONE!! So, I am certainly not up to "Stephen King" daily word count but I may make my own daily word count keep me on tract. Actually I read that his DAILY WORD COUNT to write is 1500 words!!!! Not "characters"... words!!! That is huge to say the least. But, I shall never profess to being anywhere near any of our great writers. What is nice though, is getting a tip or two you can use from them to help your own writing skills get better. I know I have said this but I like Natalie Goldberg. Her book "Writing Down The Bones" is my mantra. I have read it numerous times, and the one thing that truly hits me is that she says to WRITE! It does not matter if it is online, in a notebook, with misspellings, on the sides the paper, whatever, as along as you write everyday! That does not mean it has to be good stuff... it maybe crap! But it is what keeps those juices flowing... that is what keeps you in gear and motivated... thus it makes total sense to me...

I promise more... lots more to come... count my words please!

Thursday, May 23, 2013

In Reverence & Memory of What Memorial Day Truly Means...

Thought I would write today! But, knowing the weekend is a holiday weekend plus we have the National Annual Polka Festival here over this weekend also, and usually the TX Motorplex has some kind of drag racing special here also, town will be nuts!! With some of our town lost in the tornado last week, they have had to re-route the parade and cut it down much smaller that usual. No of the huge floats on 18 wheeler flat beds will be able to participate due to it now not being in its usual routed process. OF course parking will be a night mare!!!! Thus I went early this morning to get some of the things I felt we needed for the weekend. I sure as hell do not ant to fight off the crowds and traffic. We have lost lots of parking space, we lost many eating places, and even one of our motels took a huge hit from the tornado, and had its roof ripped off. Thus, I don't think anyone will be staying in that one. I do not think the other ones here had any damage to speak of luckily. Yet even as "bad" is ours was, it does not even compare to Moore OK. So, we cannot fuss too much. It does devastate some of our businesses though, because many of them rely on this one huge weekend, and then a couple of other big events through the year to really boost their sales and give them the cash to do other things, and keep things running for the rest of the year. So, those folks will be hurting, I am sure. Several of our smaller little eating places are in the very midst of where the major damage is, plus a couple of them also suffered lots of damage themselves. So, as this holiday rolls in, I hope we all shall celebrate and have fun, BUT also keep a reverent spirit, and be in prayer for those who have lost home, job, and some even family and friends. They do not know even where to begin to put their lives back together again. My hopes are that prayers are answered, and through those that can, they will lift up the city of Moore, and help rebuild it better for those folks than it was before... Be safe this weekend, think also of our soldiers, our volunteers, those who do things above the call of their duty for those in despair, and remember those we have also lost that have fought the battle to keep us all safe... Happy Memorial Day Weekend, Rhia

Wednesday, May 22, 2013

Letting Go.. Letting Flow... Trying to put the pieces back together again...

I am so totally thrilled over both books and want to talk about them. Yet, with all of the destruction going on around our nation and even right here in my home town, it is difficult for me to be elated over my newly published book, "Time Tattered Musings" - "Reflections through the Looking Glass of Pain & Wisdom". It is so full of things that "matter" in life, a great deal about chronic illness, pain, and how I have tried to overcome them. But, my best I feel is yet to come. I don't mean to "brag". That is not why I just made that statement. I said it because I feel my 3rd book will truly delve into my intimate journey of just how this illnesses and the chronic pain have changed my life in many ways, not all bad, not all good, yet I am still who I am in the "inner core" of me. They have not been allowed to destroy the person who I am inside. That is a hard thing to choose do to. I feel it is a "choice". You can absolutely "choose" to allow illness and pain to change you totally into someone you don't know. At times all of us "feel" that way. But, as a whole, you can also make a conscious choice NOT to have these issues change the person you are. That person who has snow skied, vacationed, been to other countries, painted, sewed, been with friends, helped family, volunteered, taken care of Grandchildren, gardened, been fishing, camped out, and you can make this list go on forever, yet you can know you are still that person within and without. What HAS changed is how you do things, deciding how to possible do something a different way, or allowing one idea or hobby to let go of, yet picking up another that you can now do, even with your disabilities from illness and pain. Yes, there are many of the what we used to consider normal activities of our lives, that we no longer can do, or we must do them at a slower rate, or possibly just had to stop all together. Yet, if you look closely, you can also find a new activity that will make you feel on top of that mountain, ready to shout to the world, YES!!! Look at ME, I CAN do this! I can be "useful". I can thrive, prosper, give back to others, and still be myself, even if I have to find alternative ways to do so. I shall try in my new book to relay that message to each and everyone who is suffering, who will suffer, who has suffered, or knows someone that suffers from all of the horrid chronic afflictions that "seem" to wreck our lives, much like the tornado's of 2013, have wrecked others lives in a different way. We often feel as if a wrecking ball has shattered us into a thousand pieces, that we perceive like we will never be able to put ourselves back together again. Yet, with love of self and from others, with a renewal of faith, with the guidance of hope, with our own "higher power", and with our own tenacity, we can do it! As saddened as I am by all that has happened over the past several days, I am bound and determined to persevere over all of the negativity that surrounds me, and tell it to "take a hike". I shall WIN!!!! And so shall you!!!!:) Rhia