Showing posts with label human suffering. Show all posts
Showing posts with label human suffering. Show all posts

Tuesday, November 15, 2016

WEGO Bloggers Challenge for Monday November 14th 2016 - Monday, Monday.... "Purging what "burns me out", makes me upset, gets me down and out" so I can "deal" with it on Tuesday

This is an easy one. TOO MANY IRONS IN THE FIRE AND TRYING TO KEEP THEM ALL HOT AND READY TO GO! 

Trying to do 100 things at once, being ALL to everyone and not able to just say ENOUGH, I NEED HELP AND I NEED A BREAK FROM THE INSANITY, THE PAIN, I NEED THE SURGERIES, AND I WANT MY LIFE BACK WHERE I CAN DO MY WRITING, MY ADVOCACY AND BE READY TO HIT WASHINGTON DC IN MARCH, FOR THE AF SUMMIT READY TO "ROAR" AT ARE "NEW" CONGRESS!

Since my Mom getting so ill so quickly, and needing my help 24/365/7, and then passing away so suddenly this past June, my life has turned into a disaster beyond anything I could have ever imagined. Being an only child made that even more difficult because it was ME and only myself to do everything. When you are already chronically ill yourself and your own "caretaker" of 13 years suddenly has walked out a year before, I was left to try and hold on taking care of her, myself, and ALL that has gone with that, and then after she passed away, I am still reeiing from "wanting to get back to having some of my life, having surgeries I need, writing and doing my advocacy work. 

I thought once "most was settled" just before the funeral, then just after, some type of somewhat "normal" would begin to come to fruition. 

Boy, what a "slap" in the face I got, with paperwork, and all that STILL HAS TO BE DONE, even though she is no longer with us, I miss her dearly, and although I "thought" we had everything in order long ago, I found out that somehow things got "changed" that I was not made aware of. That has caused hard feelings, and those things were the very last I wanted for myself and my two grown children.

So, hopefully by "telling" this once again, and often what my writing can be for, is to "purge" some of what is stressing me so badly, and help to get my surgery on my neck done at least before the end of the year, and allow me to have back some of that normality I so need in my life.

I LOVE my Mom, and I MISS HER, but at times I am so UPSET AT HER, for "changing" things that did just what I told her it would leave harsh feelings for those left here to continue on. 

 

 

 

Sunday, January 11, 2015

Having A Life of Chronic Pain & Living It is no "Piece of Cake" - not even in the movie...

After watching the trailer of this movie, reading about it, hearing what Jennifer Aniston said about it in her own words, then to see that Ann Palmer the President and CEO of the Arthritis Foundation is not just endorsing the movie, she actually attended a "preliminary get together" about the film with Jennifer Aniston, Stacey Courtney, the stunt coordinator in the movie, that took place in LA, when the limited screening of the Film came out on Jan 6th. Aniston talked about things she prepared herself for in order to make the movie, which included gaining a bit of weight, not exercising and going without makeup in order to "get into" the character role. Stacey, that was like a mentor to Jennifer had also been in an accident that left her with chronic pain, so she was able to help the movie portray a great deal of the "real" life of those of us dealing with chronic illnesses, diseases, and chronic pain....



Here is the URL to the information about the movie, which is presented on the AF website:  http://www.arthritis.org/cake/

I feel that this movie, will move many of us into tears... for "we" are going to know the all too familiar events that take place. I've heard she fits the part very well, and through herself into the character, by doing things or not doing things, that we also totally understand. Many of us find there is not enough energy or spoons, of whatever you use to talk about the amount of energy you have for any one given day... most of the time doing makeup and hair... get left off the days events because we know if we do some of that, the energy we need for other errands, doctors appointments, groceries... or going out with our friends and family. I am truly anxious to see this, and now after Ms. Palmer from the AF is also announcing it on the AF site, I found it even more intriguing.

I believe the public opening is officially around January 28th or so... I just hope it does portray a very detailed and accurate view to others, caretakers, family, friends, and even strangers as to why we truly in our everyday lives live with. You can explain and explain, yet at times unless that person is also not able to understand all of the rawness, the vunerable ways we all too often feel when the pain beats us down so much, that it is difficult to think about another day of feeling like you do. It seems EVEN WITH the PAIN PUMP, the "breakthrough pain medications", muscle relaxers and everything else we ingest, or do, from exercise, to aromatherapy... to going to the Chiropracter, to acupuncture... creams, salves, lotions, you name it to find some kind of relief from the moment to moment night mare of ongoing pain.

                                      

http://www.arthritis.org/about-us/news-and-updates/cake-a-painful-slice-of-life.php





Thursday, February 13, 2014

Trying to Absorb Everything that seems to be "bouncing" my way...or getting run over?



Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.


Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...


LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....

Saturday, December 21, 2013

"Resolving Resolutions" for 2014 & Weird Weather, High Humidity in December, & RA/Lupus PAIN!!!

It's Time for A Chance To Touch Others Lives, even through Autoimmune Illnesses, You CAN make A Difference!



As I am deciding as I do each year at this time what I shall decide to try and "change", do more of, less of, try new, stop the old... in other words... what some call my "Resolutions" for 2014, I actually don't like the term "resolutions". Simply said, more often than not, it is a "cliche'" and those things usually don't get accomplished. I'm not saying "we" just make them for lip service, but it has become this tradition to make your New Years Resolutions. Whether it be to eat healthier, quit smoking or other bad habits, visit family more, exercise more, get stress under control, and the list of those things we want to try and do or not do, to make our "New Year" a fresh beginning. As we press forward quickly into the 2014 year, and I do mean QUICKLY; as most of us, I also am reflecting upon 2013. I managed to get my 2nd prose and poetry book published! That was a great achievement! Yet, I am somewhat disappointed as myself because I did not get as far on my "life's battle with AA illnesses" as I wanted to. Last year 2012, I had made a promise to myself to have it ready for the last look overs and edits; then have it ready to publish in February 2014. At that time, the task seemed very possible. I was thrilled to have made myself a goal in date form. So, I put my eyes on the road of writing, yet got wrecked and knocked off that driven path several times over the course of 2013.

As I had begin to say in another blog post, that I still have not "published", I had been writing about our little neighborhood and town in general. Usually right at the first of December, every house on my street has some Christmas lights and decorations, including us. It is like we almost have an unspoken tradition on the block that we all put something up for the holiday, even if it is just lights. We have icicle lights that look amazing on the front of our tiny home. I had decorated my two beautiful planters last year with wrapped "presents", Xmas Flowers in silk, and had lights around those also. I had little sacks that I put the tiny battery operated tea lights in, in every window in the front, and always turned them on all night about the last two weeks before Christmas. A door decoration, our tree with our at that time 10 "sleigh bells" we order each year as a tradition from our very 1st Christmas together, little decorations that I hang up above each doorway in the house, cup towels decorated for the holidays, and my Christmas Bedspread set that is just beautiful with these "golden colored" sheets I use with it. At one time Jim and I even made a new Christmas puzzle together to hang up. It seems we either got bored with those (I have like 40 we put together, put on a backer board, and I have them hung up in the house. I have three "logs" that I had gotten from a huge limb that fell several years ago from one of our trees. I took the saw and cut off a fairly thick section about 14 to 16 inches long or so. Then I take Xmas flowers, ribbon, tiny decorations, cotton for snow etc, and decorate all three of them. One for each room we are in the most. Kitchen, Office and Living Room.

But, as of this morning, one neighbor has his lights up. Not one other home is lit up, including ours. As I began to reflect over the past couple of months in our own little world, there are MANY, MANY of us who just almost "missed" the fact that holidays are here! From the horrible things happening in our nation; destructive storms and weather, to wildfires, droughts, floods, crops destroyed by bugs. People are still hurting from job loss, homes being foreclosed on, trying to just feed a family, money is tight for a huge amount of our nation and around the world. I had a conversation with a close friend of mine. She had told me her husband, who has been with a company for 11 years, had his Christmas bonus cut down to ONLY 10% of what it always was!!!! This company is NOT hurting by any means. It had the financial ability to treat its employees right. Yet, one bad apple in the bunch, with greed as green as a gourd in a "management" position, took away from those who have worked for it, so he made himself look good. Thus his "bonus" is quite "stuffed", and the others that have been loyal employees for years, are facing Christmas, with children, and no idea until the last moment, they are not going to have the bonus they are expecting. GREED! It is all over this world!

As I look around at my sparsely decorated home, and see that we are certainly not alone, it instills in me, that we must open our eyes, and open our hearts to make a difference in this nation in the coming years.

Whether we are advocating for a medical and health causes, government cause, specific health problems, domestic violence, and all of the other 100's of Charitable causes we contribute to, we are giving of ourselves to make a difference in the quality of life for others. To me, giving of yourself, through being a volunteer for an organization you truly believe in, is one of the kindest, compassionate, and self less things you can do.

With "one" person's voice, we can "change" the world! One leads to two, two lead to 10, and from there it grows, shapes, expands and becoming a beautiful thing.

We can all give a bit of cash here they and yonder, but to give of your time, of your heart, and do it freely without an provocation but because you want to make a difference in the lives of those who suffer and who will suffer without OUR voices uniting together!

So, as we reflect on what is truly precious in our holidays activities, or as you think about some of those "New Years Resolutions" give thought to giving of "your time" as a volunteer online to something, someone, any cause that touches your heart and soul! Within those moments that you give of yourself freely, you shall find a peace that does pass beyond all you could ever understand....

Hopeful for a better year in 2014.... Rhia


Friday, December 13, 2013

Autoimmune Arthritic Illnesses - Finding it not "Easy" ... To Be... Me.

An Autoimmune Space - Is it every Easy - to Be - "Your" own Me?



I heard this song last night on a movie we were watching... Oddly enough I found that David Grey's songs really hit home with me, when I was brand new in a huge city. I had never lived anywhere but a small town, & huge cities were something I "visited" to go shopping, to doctors and so forth. I got "introduced" to this man's music just after moving there, when my entire world had been completely transformed. I had gotten on a bus and road for almost 3 straight days and nights, to a job that I had never done, in the middle of Seattle that I knew nothing about, would have to "learn" how to go back and forth from Seattle to the islands around such as Bainbridge, drive in a city that had almost "mountains" in places in the main streets & to where every single thing in my whole life was going to be in the "background". I shall be "reborn" in a manner, you could call it. I was doing a job I never had done before, which was being an assistant manager at one of the apartment buildings in the "creative & quirky" part of Seattle known as Capitol Hill. Even the way of speaking was different there. Words we frequently used in Texas were not said much in Seattle. For instance, the "grocery store" as we called it most of the time in Texas, was the "market" in Seattle. Dinner was used, not "supper".  I slowly "self-learned" to try and "lose" my "Texas dialect" and try to sounds more like a I was "home grown" in Seattle. Of course you can take the girl out of TX, BUT you can never take the Texas Accent out of the girl! Just about everywhere I went the first question was after I said "Hello" was where are you from? I got asked if I were from "GA, MS, NC & several others that people tend to associate with a "southern accent". Yet, even though Texas is considered southern, they have their own unique accent. In fact we sound like a bunch of hicks from the hills. I couldn't completely take away the inflection from my born and bred accent, but what I could do is sound "less" like a southern dummy, and more educated. By the way, the FIRST thing just about every person, man or woman, said to me after I opened my mouth and they heard me speak was "Oh, that is so charming"! Man I almost hated to hear someone say that after while. I did NOT want to sound "charming". To me that just indicated I still sounded like some South Southern woman, who was about as dumb as a brick, drinking iced tea with a sprig of mint in it, wearing some frilly, flowery dress & ordering her many "staff" around all day long. Thus charming did not set well with me... LOL...
Of course being in Seattle for 5 years did "rub off" on me. I began to use "their" colloquialisms. In fact, I brought some of those back withe me to Texas. I never "wash clothes", I do laundry. I never to go the grocery store, I go to the market, the ending meal of the day is not Supper, it is Dinner. By the way I did learn another tidbit of information on "West" coast speaking from a dear friend in Lancaster CA.  One day I was talking about their local sheriff's department staff and I called them the "county boys". She about fell over laughing as she asked me to say that again. Never had she heard the term for the County Sheriff's Officers, called the County Boys. Another one she had not heard, and I noticed it in Seattle also. A "toliet" on this side of the USA is known as a toliet. In Texas it is also a commode. Along with several other "slang" terms. The "pot" is one my Mom says all the time. I think I've rubbed off on her a bit though. I notice now she may say restroom, rather than the pot etc. And when you went to “do laundry” on the western part of the country, in the south you were “washing clothes”. Now the funny thing about that one is due to my Texas accent, it sounds more like “warshing clothes, rather than washing. So of course that just made her laugh more. In fact, I have so many little “sayings” “comparisons”, things my Dad would say, and you hear from on television now or in a place that is quite southern in nature, or Texan, you will hear a few of the sayings my Dad said so often they just rubbed off on me. For instance if you are chronically late for an appointment, Dad would say “He would be late for his own funeral”. Let’s say some one happened to be a bit uneducated, or just say something “off” that may sound a bit stupid, he might say “He couldn’t pour “pee”, with instructions on the heel, or if someone may be a bit frugal with their money, then you might hear, “He is so tight he has to screw his britches on in the morning”. LOL!!!! Believe me, I could write an entire book, on just the sayings I heard all my life, and many of them come straight out of my mouth quite frequently. My husband told me I had so many of these “sayings” that came from my years of growing up with my Dad, and here in Texas, that I should write an entire book on them. I probably do have plenty for a short book honestly. When I sit here and begin to think about them, I can recall hundred’s if I made my mind up to get them all written down. 
The point of all of these things that I am talking about is to find out, even though all of us speak “English” and I guess technically, “American English”. Yet, if you traveled through most of the 50 states, you would find there are all types of sayings, dialects, or colloquialisms in just about every state. I also found out that in some states, they really do not have a quirking type of accent, such as someone from the Southern states, and so forth. They barely have an accent at all. Seattle was that way. There really was not any “accent” or particular dialect. That was what made them different, rather than having a great deal of inflection in their speech.

Onto, the beginning of all of this. Being an absolute music lover, of almost all types of music except Opera, I listened to music almost 24/7/365 when I could. I had probably heard a “David Gray” song in TX a time or two, but I never knew who he was. So, some of the people in the Seattle area really loved his music. Thus, I was introduced to his particular style and sound, of lyrics and music & I just loved it. His lyrics “spoke” to me, especially about how I had came through such a horrendous journey, allowing lots of water to flow under my own bridges, as I burned some, mended others, and built some new and stronger ones.  Another one of my favorite songs, and it is the chorus that I truly love is

(There’s so much time to make up, everywhere you turn, time we have wasted on the way, so much water moving underneath the bridge, let the waters come and carry you away.) Crosby, Stills, and Nash….

Then I hear these lyrics by David Grey, along with many of his songs, and lyrics. When I heard this one in particular, it summed up for me, all that at that time in space for me, I felt the same as the song says, “It’s not easy to be…. me”.

(Lyrics by David Gray - It’s not Easy To Be Me.

"I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me 

I’m more than a bird…I’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

I wish that I could cry
Fall upon my knees
Find a way to lie
'bout a home I’ll never see 

It may sound absurd…but don’t be naive
Even Heroes have the right to bleed
I may be disturbed…but won’t you concede
Even Heroes have the right to dream
It’s not easy to be me 

Up, up and away…away from me
Well it’s all right…You can all sleep sound tonight
I’m not crazy…or anything… 

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees 

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me 
inside of me ...... inside of me ...(x2)

I’m only a man in a funny red sheet
I’m only a man looking for a dream


I’m only a man in a funny red sheet

It’s not easy ... wu.. hoo.. hoo..

___________________________________________________

I don’t mean this in a haughty, self-righteous way. I meant it in a way, that everyone expected me to be this “Super Human”, with the answers to it all. It seemed I was expected to be “perfect”, yet I was just a woman, and women have to bleed, and I was truly looking for a dream. Part of that dream coming true was found by me in Seattle. 

Every once in a while my Mom and I are talking, and some subject comes up about me and living in Seattle for so long. Honestly, if circumstances wee different, I am almost positive I would still be in Seattle. Where you did not need screens on your windows, no bugs and flies were. For the most part your windows could be open much of the year. Many places had no air conditioning, because you didn’t need it. The seasons there are so mild, Summer is rarely very hot, the Winters are somewhat cold, and you do need heat, much of which was baseboard heating, that I had never seen. Or many of the older apartments in down town still had the old fashioned, boiler type heaters. The ones that are usually sitting in rooms, all iron and they go in loops. A boiler keeps the water hot, and it flows through pipes up to these iron steam type heaters. I had never experienced anywhere that did not require screen on windows or A/C units. 

Mom sometimes brings up really silly questions that I’ve answered 20 plus times about my being there for those years. I healed in Seattle. I did NOT WANT to “come home” to Texas. When that bus hit the road from Ennis, and I got to the Dallas bus hub, and hopped on the one that would take me to Washington State, I never looked back. The healing of my heart, emotions, mind, and my body at that time began. I felt alive, and as if the weight of the world was lifted off my shoulders. As those years began to slowly heal me there, the last thing I wanted to do, is come back to the very place, that caused me so much grief. Sometimes it is difficult for other people, especially those closest to you to understand ideas about loved ones because they are too close to the situation. There is no way to look at something “objectively” if you have your own heart and spirit. 

The “waters” that carried me under those bridges, came full circle and brought me back to where I began the journey. Yet, this time I was much different than when I left. I had put my own self back together again. I did it by myself. I didn’t have anyone to “tell” me or express to me what “they” that I should do. I did exactly as I wanted to do. So, when I entered my “home town” after 5 plus years, I was very different. In a good way. I’m not sure my two kids and Mom, may not have seen it, but I knew it. That was what counted. One thing that I didn’t realize was that I had not fully grieved the loss of my Dad, earlier that year. I thought I had. I felt angry, bitter, mad, sad, and so many more emotions that I was not expecting to be here to slap me in right in the face and hit me in the gut so hard. 

After once again delivering a small novelette to my readers, I am sure some of you maybe wondering “does this have one thing to do with Autoimmune Arthritic Illnesses”?


To answer that question is “YES! Absolutely!” Although I had shown many “symptoms” of Autoimmune Arthritic Illnesses, for many years of my life, even when I came back to Texas, 2005, I had not been given a diagnosis of any type of autoimmune illness. I had heart Degenerative Disc and Joint Disease. I had heard that my joints were just “Falling apart”. I had 2 Arthroscopic knee surgeries in 2007, one on my right shoulder, my left wrist repaired, and was in chronically severe pain every day of my life. I was exhausted all the time, my brain seemed not to function, I began to “feel” sick frequently. Then came the “pain pump” surgery to put in internally. There has only been 1 doctor back in Seattle to mention he felt I needed to see a Rheumatologist. He was sitting that appointment up, but we moved from WA state a few weeks before the appointment. So, I am not quite sure what brought the entire symptom/subject around to my PCP and I. I believe it was just a mixture of symptoms, and possibly my own research over these same symptoms, pain, fatigue, my joints being so fragile, my fingers slightly bent, and so forth. So, between his thoughts on it, and my thoughts on what I had read, he ordered about 28 tubes of blood to send off to do the ANA and every other possible test for any type of autoimmune disease. It took them a couple of hours to even get all of that blood out of me. My veins roll, and are thin. So believe me when I say it took several sticks, and several lab techs to get enough blood in those many, many tubes. 

A week or more later, I got a call from his nurse saying he had the labs back and he wanted to discuss the results. Of course I knew something mush have shown up, or he would have just had her tell me all of the labs were normal. I “hoped” as horrible is this sounds, they all of those lab tests showed SOMETHING WRONG with me! Sure enough my ANA levels, inflammation blood labs were off, along with several issues the lead to him thinking first of all I had Lupus, along with Osteoarthritis. He immediately sent me to a Rheumatologist who was very intelligent. He was elderly, and probably needed to retire, but he still knew what was important as far as labs, and as he examined me, along with asking all the questions he needed answers on, he felt it “maybe” Lupus/RA, BUT due to the wide variety of symptoms that he seen, he first diagnosed with Mixed Connective Tissue Disorder. I did not know a great deal about this particular chronic illness honestly. I first thought maybe it was another one of those “trash can” diagnosis, used when doctors can’t put an exact finger on a real diagnosis. He had told me on the very first visit, after doing X-rays of my feet/toes and hand/fingers, that I showed quite a bit of damage in my toes, fingers and especially my thumbs. He also told me I had Raynauds. He mentioned that I suffered from “hyper-flexing” of my joints. We call some people “double jointed” when they seem to be so limber, but this meant my joints tended to bend backward rather than just straighten out when I was walking and so forth. In other words rather than my knees “stopping” in their proper position when I took a step, it was like my knee would continue to push out further, thus many of my joints did the same. It was also another symptom, of all of the autoimmune disorders that were to come. I went to him for about nine months. He did a great job with extensive blood work, and examining me with each visit. He also had the greatest bed side manner, plus he had to be pushing 75 or 80 possibly years old. Yet he would remember each and every detail about the patient and if a spouse came, the spouse also. He called Jim by his name every visit. He would ask him questions, and have Jim involved in the entire visit. He also rarely looked at my chart. When he came into that examination room, he had everything in mind. He has to have the the best memory I’ve ever seen. Once all of the blood work, X-rays and so on were complete, and he still decided he was not quite sure about the Lupus/RA yet, he put me on Plaquenil. The only ONE thing that both my husband and I really was disappointed with him was, that he did NOT believe in “aggressive” therapy. In fact he even showed on paperwork to still be doing “gold injections”. Which as far as I know have been not done in many years. He also was truly not versed on the newer medications, such as the biologics, that were really coming out strongly about that time. 

So, I began the hunt for a new Rheumatologist. That turned out to be a nightmare! Little did I know many of the “Rheumys” out there, specialize, in one way or the other. I met one that believed ONLY in labs. She was not going to budge on any medications, and she did not care how badly the pain was, stiffness was, and honestly almost took me off of what medications I was already on. At that time I was still on the Plaquenil, plus my regular MD had put me on Methotrexate by then. I went to about 3 visits, and ran. I went to another one that sounded promising. He was more of a “research” and clinical trial for Lupus Rheumy. I ran into one that supposedly was one of the top Rheumatologists in Dallas. It was this huge, fancy, entire group of doctors who had 3 floors in a office building in Dallas. It did not take me but around 20 seconds and I ran. He did not agree with anything any of the other physicians had said. He frankly told me he thought I was just another one of those with “Fibromyalgia”, and that UNLESS my blood work was extremely abnormal, I really was mostly wasting his time and mine. I guess he was a nonbeliever in sero-negative  Rheumatoid Arthritis. Besides, he was just another “click” up the ladder to the researchers, clinical trials bunch (don’t get me wrong I am all for clinical trials) but there was just something about him and another one I saw that gave me the creeps. I’ve never looked it up, but I know in some form or fashion, these physicians that do participate in clinical trials must get compensated for it. After I seen and heard what I did, I figure they must get a pretty heavy load of compensation in one way or the other for participating in them. 

FINALLY due to a dear friend, who in fact I met on Facebook, led me to the very BEST, venturing to say Rheumatologist in TX for sure. I bet he would rank very high up on the scales in the entire nation! He is an “aggressive” thinker. He also LIKES the fact patients educate themselves, research their symptoms, medications and illnesses. He appreciates those who help him, by helping themselves. In several occasions, I’ve went in to see him with a note about a different medication, or if we can try this, that or the other. And unless he has some really specific reason for NOT using it on me, which it fully explains his reasoning, “we (him and I) have followed some of the things I suggested. As I always say, I am NOT an expert, not a doctor, etc…. but when it comes to MY OWN BODY, I am ranking very high on the expert level of what I feel will help or not help me. Most of us are “experts” when it comes to our own bodies, illnesses, medications, and so on.

Now, to the final “summary” of why all of this long, drawn out detailed story comes about, after me hearing a song that is so “special” to me is, I found my very first deep understanding of myself, and my own life, that 5 years in Seattle. At times is was not a grand picnic. I was lonely some, there was no one there to help me with anything. In fact my car gave me some issues, just before I was leaving on a vacation, and I had to trust my instincts, along with trust people I had been working with, on a mechanic. So, as incredibly much of strength, determination, self-worth, feeling I was capable of taking care of me and all of those good things that so changed in me was only the first leg of that journey.


Alas, what transpired in Seattle to change me, and make me stronger, wiser, and more determined also helped me to be right here, right now, facing each and every hurdle that comes my (our) way.
Coming back “home”, facing the loss of my Dad, and finally facing my own extremely potentially “serious” and could be down right deadly diseases, 8 plus surgeries within 2 years, and all of the other million things here, I WAS able to first of all, be me. I found “me” in Seattle. And “she” came back with “me”. So, “no I can’t stand and fly, and I’m not that naive, I’m just out to find”, “the better part of me” - Even “super people” truly bleed, I’m more than a plane and more than some pretty face aboard a train… yet It’s Not Easy To Be…Me….


p.s. It’s not easy…. for anyone of us dealing with autoimmune illnesses, which rule our very existence so much… to be YOUR own “me”. 

Friday, January 15, 2010

Mother Natures Wrath- Greatly Shadows our own pain

As the pictures came rolling in one by one this morning of the Nation of Haiti, and all that no longer exists for one of the poorest nations in the world, it puts our own pain and suffering into perspective, as that horrific disaster continues to wipe our hundred’s of thousands of innocent lives. Mother Nature spares no one... from the youngest of infants to the eldest of elders, body upon body, sheets, plastic, or whatever they can find to cover the dead over, while the ones that have been released from the mortuary to their loved ones... and are laid to rest by their own families having to dig the graves. Many thousands will not be claimed, since it is very probable entire families are wiped completely out, thus mass graves, one today of 7,000 people was dug and they brought corpse after corpse laying them to rest together forever, not one living to be able to tell of the horror that was in their hearts during those devastating minutes when the Earth literally shook so hard beneath their feet, it knocked down 4 and more story buildings, obliterated the Embassies, schools, hospitals, houses, stores, sending every stone to lie upon the ground like an atomic bomb had hit the entire 1 million plus people, and the Capitol of Haiti. These people already know daily struggles and suffering. Many of them already living in cardboard boxes, in small shacks on the mountain sides, now not a one standing. Often many of those millions living off of less than 2.00 a day for an entire family. Now, the most valuable thing there is no longer monetary, but life saving water and food.

There are visions of children injured wandering around as they pass those not so fortunate laying covered up around their feet. The injured sitting in the street, some not able to walk, no one to help them, for those that walk by, cannot even help themselves. I cannot begin to explain in the depths of my heart, just how fortunate I feel. Even though we suffer from Chronic Illnesses, Pain, and so many hardships, nothing compares to what those Haitian survivors are dealing with. Homes and all wiped away. Many of their loved ones dead, or buried beneath the massive piles of rubble. No shelter from aftershocks that range sometimes over 5 on the Richter Scale. No clean water, no food and n0 fuel to go and be able to get supplies. As many countries including our own US go hurriedly to help, it will be lifetimes for some of those before they will ever see what seems like home. It is a day of sorrow, it is a day of bravery, it is a day of sacrifice, of humbleness, of mourning for those that lost their lives, and even more grief for those surviving knowing all too well without medical assistance, water and food, they may die also.

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