Wednesday, June 26, 2013

"Mystery" of Fibromylagia Could be Solved!!

This is just incredible!! IF they now have all of this, there is certainly a way to "cure" it!!! I just had to post this for all of the millions that suffer with this illness that are still all too often told "it is all in your head"  NO! It is in your skin!

Tuesday, June 25, 2013

Truly "Living" between Flares

Life without chronic illness is difficult enough these days. Our times seems to never be our own. When you work outside the home, have children, and try to maintain a home, how you work in "self time" is certainly a challenge.

Yet, when you deal with a chronic illness or illnesses, especially those that bring pain, fatigue and other symptoms that slow you down, it is just as bad as the above. You may not work "outside" the home, and due to illness and pain, you do not have the capability to do all you set out to do in a given day, thus time is even more of a precious commodity. I have been so very fortunate to have most of the long time "flares" seemingly under control. Even though it took many years, even my husband and family notice that my days and weeks of being on the sofa, day after day, not able to do much of anything have become less and less. The past couple of months have just been mind boggling even for me. Sure, I still have daily pain, stiffness, swelling, and the fatigue is always on the back burner simmering. Yet, I have been able to keep them under control, at bay, for a good while now.

The spring and summer always seem to help bring even the worst of chronic illness somewhat to a lesser stance. You still have symptoms, they are like the wolf, always underlying, you know they have not left for good. Yet, medications seem to work better, just having an increase of sun light, and not so much dreary and dark time in our days, the warmth (LET'S SAY Hot as HADES!!) in TX now, the beauty of flowers, green trees, and all of the "renewal" of life, is like breathing fresh life into your own body. Now, I must admit there are some things about the heat and sun that are not good at all for diseases such as Lupus, RA, FM, CFS and the like. As wonderful as sunlight is for all of us, when filtered out from the harmful rays with the proper sunscreen, it can bring an acute flair of Lupus on. You must be extremely cautious about the sun. I know I get a little lax in putting on my sunscreen, or I want to run out in middle of the hot part of the afternoon and put more water on my newer planted plants, and as soon as I step into that hot sun, beading down on me, I can just feel it blistering my skin. I know the Lupus has lots to do with it, but so do some of the medications I take for the Lupus. My skin has become so thin, that a few moments out in full sun, and I am baking not the correct kind. So, please heed the warnings, for all, if you are outside, use the sunscreen to block those harmful rays and do not overheat when doing activities such as yard work. IF you have Lupus, you want to AVOID the full sun as much as possible. Use your sunscreen especially a good one on your face. You have the added benefit of helping to hold back wrinkles and fine lines that those sun worshipers tend to find at a young age.

Thus back to my story. I have been able for weeks now to enjoy being outside. Along with the coming of spring and summer came a renewal of life almost, when I an able to be out in the wonders of the warm weather. I love the plant life, all of the blossoms, the greenness of the trees, the breeze when it is here and not a hot breeze, planting new plants, and all that you can do when the days are longer. Yet I know I take a chance when I get out and "overdo". I know on those days I feel almost normal again, so I want to cherish every moment, by working everything possible in that I have not felt like doing for so long.

Of course, I knew there would soon come a day that the "wolf" would rear his ugly head, and yesterday was the day. I woke feeling like I had partied for days without stopping. I felt like I had a hangover from hell, severe headache, nauseated, pain in my joints, fatigue, and just so lethargic. All of those symptoms you dread, because you know what they mean. Thus I was on the sofa most of the day yesterday. Then you are concerned... you ask yourself "is this just a one day thing", or is this going to turn into a full blown flare? You make it almost worse because you question your own motives. Yet, I tried my best not question whether this is a full blown flair, and try to not feel "personally" responsible it came on. There are times when someone with Lupus may not appear to do anything to "cause" this horrid "Wolf" to surface and yet you still have all of the symptoms. Other times you may be out and about for weeks at a time, even months, staying busy, not even concerned about this chronic illness coming on. And you may run errands, be outside, do yard work, house work, and run around like a "chicken with your head cut off" as my Dad used to say, yet the activities don't effect your outcome of a flare or not. So, as I walked in the very early dawn around my driveway for my usual exercise time, I thought about lyrics to a song that somehow could "signify" all the different things and ways Lupus and the other Chronic Illnesses and Pain act in your life... But, I want to make it more not actually using the Lupus word in the song... but someway I want to get the message over about the heart ache, the devastation, the pain, the fogginess... yet just how much courage you have to have to rise above all of that each morning, face the day... and try to meet the challenge of these illnesses no matter what they decide you should stand for in your life. LOL, brain fog at the moment in fact has set in. I have a certain "word" I want to use to describe what I want the lyrics to be, yet I can't think of the exact word to describe what I am speaking of.

Thus, so as I walked and walked, singing to myself, different ways to put lyrics, in order for whomever hears it will know it is about a heart ache, but not one about love's and the way it can break your heart... I want to word it to where... it is a ........ well damned, an explanation about the disease and its symptoms without using Lupus etc in it exactly... Ah!!!! "Metaphorical Music!" that is the "term" I spent hours looking for to describe the type of music lyrics I am trying to write. See, another day of haze from my brain... yet I won't allow that wolf to get hold of my reigns.... I see him coming, I hear his roar... for I Know the Wolf can come a knocking at my door...

Just a line or so I thought might work... not sure.. but at least I finally found what one word I was trying my damnedest to think of....

Okay, more things to do, like get over the damned "sting" that I got this am while watering plants outside... I received a surprise that I did not want... not sure what it was but I think a ground hornet that decided to use my foot for his stings... I cried and screamed... OMG right between my toes...
Thus I am a bit tired this morning, and kind of worn down...

Friday, June 21, 2013

Here is a much better copy that is legible!

Being "Wowed" by A Few Wonderful People!

Wow!!! Yes, how about that, 2 "wows" in a row from me this week! honestly, I can hardly contain myself at the moment. You would be totally shocked at what a few wondrous people on FB give to me through their sharing, watering my plants, and then my walk this morning, (as I am still dripping with sweat) gave to me!!! I realized so much through those minutes that I am not sure if I can get all of it written down the way my thoughts were going. First of all, I just figured out (and I knew it but it just hit me in a much different way), how much my Mom is proud of me. I also understand now that because of things she tells me now, she wants me to know that their life when I was a child was not all a "fairy tale" as I thought it was. They came from such a different realm of time due to when they were born (The Depression, farms, one room school houses etc) and even though I was a child and did not realize it, Mom so wished she would have "stood up" more for herself and me. Dad also was 13 years older than her. So, he came from a time that women did nothing but stay home, cook, clean, raise kids, work on the farm... they did not work away from home, they did not go to college, they did not do the things that women do now everyday. So, he often treated our home like it was back in the days of when he was young. He though he "ran the house"... I always tell this and it shows just how "backwards" our home life was at times. My Mom till this day, CANNOT PUT GAS IN HER OWN CAR! He never taught her... she never took care of the bills, she never did so many things that I have done all my life. Daddy tended to "be the "man" of the house" and what he said, went... I had to ask him to drive the car to school, or go out. She never made a decision. He felt me being in the band, or even when I went to college after I was an adult, grown and married... he thought that was a waste. But, he was not being "mean" it was just the way he was taught and raised. Well, Mom kind of in the same thing, women did not at that time "stand up" as much for themselves. So, she went along with what he said. The funny thing things really did not change for them until way after Dad RETIRED after 45 years on the same job, and he was older. Then he began to do things differently. But, now when she tells me certain stories about their past, she wants to let me know she wishes she would have did things a lot differently. Especially when it came to me... my clothes, my hair, me going to ball games (Dad would not let me), and just many things we wished she would have stood up for us and changed things for the better. As I told her, "you did what you felt at the time was right". Up until these last few years after being alone, now is when she has come to realize things could be been different. Life at the time, was because that is how it was...
All of us that come from what a friend of our used to call "Gen X"... we are not "birthers", or "Baby boomers" etc... or any of those era's ... we are kind of in between... thus being born in the time of around 1960 until about 65 or so, our lives were in a much different generation. We have watched so many changes, and also we are young enough to experience them also... cell phones, the internet, hell computers themselves (look HOW MUCH) they have changed and changed our lives, flat screen TV's, gosh everything from the front load "steam" washing machines, to ordering from Amazon anything your heart desires... staying in touch by email, FB, or talking to one another through Skype, or Messenger... look at the camera's from just 20 years ago... our cars... you name it, we have watched from the time "we walked on the moon", and now we are "roving on Mars". We are an amazing generation... and here I am at 53 years old (damned I hate to admit that) and the number of things that I have had the opportunity to do and watch are stupendous. When I was 13, I never dreamed I would have a book published, not truly. I dreamed it in the sense of hoping I would be "discovered". But no way would anyone even 10 years ago thought how inexpensive it could be... even in the "self-publishing" era a few years ago, the expense was in the thousands.... now we can have our things online, on blogs, on social media places, on web sites, on heck our own website (i have had several), on Amazon for sale, on an I-Pad, Kindle in "digital" form. So, the blessed journey to get where I am today... yes maybe I did not realize my life could have been different at times, but it has brought me to where I am right now, at this moment, with this breath and the next. Mom questioned me about marrying so young... well I thought that is what I was supposed to do... it was the only thing I had seen... yet so many of my fellow class mates attended college, and are veterinarians, and have made incredible lives for themselves. Some left this small town, and others stayed. The Class of ’78 certainly did spread their wings and fly! I chose a road, but one that took me to work full time, go to college part time, get my associate degree after what seemed like years in accounting. Sometimes I wonder why I did not choose to go into the writing classes, since writing was my ultimate passion, even though I loved accounting.
I went onto discover many other things about myself. Actually I am quite a good painter, in oil paints. I have had many, many compliments on my paintings. I still have some piano and keyboard skills, and even though I am a little rusty, I can pick it back up with a little practice. I also play the drums, learned I can write lyrics, and even put music to it and have an entire song. My health always kept me from “climbing” the corporate ladder. Of course, I never had those skills anyway. I could not be a back-stabbing, back-biting, stepping on others to get what I wanted witch. I could not sleep my way to the top, not my style. Thus, illness in my life was also a journey that lead me other places and to learn other things about myself and life. Without my first two marriages, I would not have my two incredible grown kids. Without my times of being abused, I would not have learned that I am a survivor, and it also taught me to reach our and help others. I never “ran from” anything, but “ran” to something instead. Many thought I ran away from TX, in ways I did, but I actually ran towards a “LIFE” that finally was one that was my own. No one else was telling me how to live. I could continue on with this and I may on my blog, but I don’t want to lose what I want to say here…

I am blessed… I have several women here that inspire me so much more than you could ever know … I have been elated so much with the trust, truth, and the way we open up to one another, and bear our souls… raw… yet in a way of healing. We life each other up, or I certainly know you lift me up… and make me feel alive again, when these disease want to bring me to my knees. I feel incredible fortunate to have you in my life, and it is as if you are right here next to me so many times. Thank you… thank you so much for what you have given of yourself, and asking nothing in return… for that I just could not ask for more, than what we share… Luv you, Rhia

Thursday, June 20, 2013

Awesome News!!! Our Local Paper Has My Story about my books being published in it!!!

WOW@!!! Great News!!!! Our Local paper FINALLY PRINTED an article about myself and my BOOKS!!! I was so shocked. I did not know they were doing it this soon. I just went there on Monday, then came home and resent emailed it to another lady who said she would get it to the proper person. Then I open the paper last night to the 2nd page and there it is, almost an ENTIRE HALF PAGE with my story about my two books, and a picture of me and the latest book!!!! All I could say at first to my husband was MY BOOK!!! We ran to buy more copies and then went by Mom's to surprise her!!! I knew that would make her so happy! She had been waiting for that article to appear hopefully! I will either get a copy scanned and put in or I may find it online at their website. I will make sure I look! Hugs, to all Rhia

Wednesday, June 12, 2013

Since When did the "system" decide to tell us and our physicians what medications we needed or not need to take???

I don't think I told this yet, thus I am now. About a week ago I went into my usual pharmacy I use for everything unless it is something they can't get. I have been using them for years and years. I have not been very happy with the pharmacist as of late. HE is kind of new, he has a foreign accent, and seems nice but what he said to me "took the cake" a week ago. He called me over to the "counseling" window, and told me that "he" and "I" needed to sit down and "discuss" my medications that my doctors are giving me! I looked at him and said WHAT the hell are you talking about? When did it get to where a pharmacist can "tell my own doctors" what to give and what NOT to give me??? He went on to explain, since I have several physicians, YES i do, and they may not know what the other is giving me...WRONG!!! YES THEY DO! I TELL THEM AND THEY TELL EACH OTHER! I told him! and he continued to tell me... well they maybe giving me medications that I may NOT NEED!! Are you Insane??? I have multiple illnesses, including Lupus, RA, heart attacks twice, MCTD, Sjogren's... plus others... and NO I am NOT taking "duplicate" or not necessary meds! I KNOW! also what I can and cannot take! So, I asked him??? Where is this coming from ...INSURANCE COMPANY??!! Of course Medicare and the Insurance companies are NOW going to tell OUR DOCTORS what WE NEED and DO NOT NEED??? Nuts, it is totally nuts! He insisted he would "call me next week" and sit up an appt to "speak with me". The hell he will!!!! I got online with my insurance, found this link with them that is about "optimizing" your prescriptions. Mainly they want to see if all you are taking can be "generics" or not, which everything that is and can be for me is already! Plus I could see some elderly person possibly taking more than one of something, if they have more than one doctor, they are confused (as my Mom can be), or do not have anyone to help them... BUT that is NOT me! Quite frankly he offended the hell out of me. If I were not already so accustomed to WG's and all of the other staff etc... I would MOVE EVERY SCRIPT I HAVE! Anyway, I WENT THROUGH AND PRINTED something from Humana that SHOWS  that MY MEDICATION IS "Optimized" and NOTHING CAN BE ADDED OR TAKEN AWAY! I printed it, and next time I go in I intend on handing it to them and telling them to take me of their stupid "list"... I am as I already said, doing what I am supposed to as far as my meds, my doctors and trying to "save" myself and my insurance company money. I don't need some pharmacist telling me what and what I cannot take! If I was on something that might cause a "harmful reaction" then yes, do your job! NOT try and tell me and my doctors about anything else... Lord I was pissed....

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?
  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 :