Saturday April 25th, Wego Writers Challenge 2015 - "Wordie" #HAWMC

#HAWMC

This was really cool!!!! I enjoyed doing it. Wow, I added quite a few words, but I can see making one huge very quickly with all of the primary words from a blog!

#Hashtag, Lupus, Blogging, Life, and the Life of everyone who deals with Autoimmune Illnesses - patients, caretakers, family and friends...

My dentist said it was NOT an invasive as a bone graft, and once that is done, then around the middle of November I go back for another set of X-rays to see how well the jaw bones are filling in and healing where the teeth once were. I pray they will be ready for the mini implanted pins and I will get over all of this dental mess once and for all. It has just been not only a pain in the mouth, the wallet and has been a massive pain in the butt. Anyone that ever has to go through the entire process of having all of what is left of your teeth pulled, to then go directly to dentures, and them NOT hold as well as they should... YET, you must wait patiently or for some impatiently... for the bones to "fill in" where the teeth were before you can have the "mini implanted" little bars to hold them secure... I HONESTLY FEEL YOUR PAIN AND SHARE YOUR NIGHTMARE!!! It was not really having the teeth that were left pulled 5 at a time... the "laughing gas" helped to get through that. Besides I am not afraid of needles, even though they are never pleasant in especially the roof of your mouth anywhere... or even the pulling of the teeth in itself. Other than mine being tough as hell to get out (you would think the Sjogren's would have had them degenerated enough that they would come out easier. That is not the case. Mine had a tendency to break, split, fly over the room, and give the dentist a run for his money, as my Dad would have said... But, that last go at the rest of the front teeth, which I had 11 left! Then to have that sewn up and put the dentures right in over the top of all of that where they were pulled... was not a great experience either... Honestly, I still have soreness around my lower part of my nose, and upper lip, even the "hinge" of my jawbones on one side wants to almost "pop" out of place at times. Many people say I am "LOUD" when I speak, but it is surely NOT from my mouth itself being big... in fact it is just the opposite... my mouth is so small, that is why my teeth were so crowded together, even after 2 or 3 molars being pulled thinking I would be getting braces years and years ago, and my 4 wisdom teeth laying cross wise down in my mouth having to be cut out because there was no place to go to pull them out.... I have always had to use a small fork and a small spoon to eat with... there is no way I could try to get a larger spoon in my mouth... like normal people do.... I got my "mouth" from Mom's side of the family as far as bone structure - a great deal like my Grandmothers on the maternal side... yet I got my Dad's side of the family - Teeth... which we all my son, my Dad, My half -Brother, the larger two top teeth in the front, and just a bit larger teeth that just did not fit very well into a smaller framed mouth such as mine. I went for eon's hating my teeth, and you would very rarely see me smile in front of a camera. So, I did get my wish of "beautiful teeth"... after I was 54 yrs old, and had to have mine gotten rid of and had "falsies" LOL.. put in... but hey, they are MINE and they are beautiful... sometimes we get what we want, but just not in the way we expect it to.
Thus, I am trying to once again be patient, hope that tiny little hole that is driving me nuts on the top right hand, where there is that little oral-maxillary fistula or fissure... that just makes it sound HUGE, so I don't really like calling it that , but that is the
medical term for what it is.... By the the while I am still trying to figure out the           #hashtag business of #rhia or #lupus or #rheumatoidarthritis or hummm what about #drcampo wonder what that would bring up... I do have something else I am thinking about doing... and if you care to join in, I would love for you too... One of the bit online health sites had a "blog" kind of contest that everyone could participate in for 30 days during a certain month of the year. Well, somehow I got my wires crossed (what is new)  so I had posted here and on my blog all about it. Then I got to seeing some of what I had actually found online was last year during a month, not new for this year... so of course after finding out for sure from someone there, I took all of it down from my FB page and from my blog. BUT... I had this idea since I sometimes have a difficult time trying to decide what "subject" to go with and write, I would use some of their ideas that I enjoyed thinking of writing about and doing for that the month of November on my own blog. I may mot be able to do it exactly ALL 30 DAYS... but it would be fun to just pick one & try and do one a day and write about an entirely different subject each day. NOW the FUN part is I would LOVE TO HAVE SOME OF YOU GET ON THE BANDWAGON and POST also on my blog... I could post the original idea, along with my "views" on the subject, then have each of you that wanted to - to put yours under it where you click to go and make a comment!!!! I may even make one post and just keep that one going all through the month, doing the same... so if you would like to joint me, feel free to take a look at my blog. I will post a few topics to get started with, and if you can think of something you might like to blog about or read about feel free to private message me here, or on Google since Blogger is part of Google... and we will see how much fun we can drum up :)  I will decide whether to begin "here" on a blog post with the ones for November OR whether to put them on another page... I will let you know for sure this week sometimes....

Perfection we find in one rose... and perfection we seek always in ourselves and into what we feel inside is meek....

A Dear Friend and Her Own Fight with Cancer at a very early age, now coming back with a vengenence

Denise, you are so welcome, and I so treasure our friendship. You always have a smile for me, no matter how badly you have to be feeling. I relate a "bit" to the chemotherapy, just due to the same types of medications they are using for the RA and Lupus. But, I know all of the side effects that go along with much larger doses of most of them, can make you feel so horribly tired, and really probably ready for the sofa than on your feet at WG... yet you always do just as the others have said, have a smile, a kind word, and for that you bless each soul that comes in and who has a chance to get to speak with you. Jim and I have just been so uplifted by your prayers, the card was just awesome for Jim, he talks about it all the time, and he got it from you just when he was having a down moment in the hospital. So, again you were "there" in words and spirit when he needed that so much. It is so very, very difficult to watch someone close to you have to go through so much "drama" to say the least in life. I still find myself "questioning" why? Why you? Why Jim? Why myself, and the many, many other people that are just kind, honest, and want to bring something "good" into the world have so much physical, mental, and/or emotional pain? I try so hard to not let that show, and I also try NOT to feel like my own health issues, and now with Jim's... that in public, I don't want to "burden" others with the sometimes gory, and sometimes almost down right unbelievable things that have happened to us, especially since about this past Christmas. I know some must think I am just nuts, and there is no way myself, Jim, friends like you... could have to succumb to so much, so quickly, and without a "break". My own health issues have just in themselves even brought my pain doctor to tears just last week, when I told him how much had happened since he filled my pain pump just over three months ago. Then when I tell him about Jim's plight in the midst of it, he was just stunned. He stood their shaking his head and saying he sometimes just can't believe people have to endure such hardship, whether in physical illnesses, emotional and family issues, and all of the mental anguish that some of us have to go through in life. I am sure him being a pain specialist and someone who served in the armed services as a physician, before his own practice he has
 seen and does see so many people suffer so much. And what truly makes that almost sad, is the very thing he wants to do in being a Pain Specialist, is HELP HIS PATIENTS... yet due to ALL of the rotten insurance companies, the government fingers all over Medicare, Medicaid, the Medicare Advantage Plans, such as mine, and those that come in desperately needing relief, yet they have no insurance, and just the cost of one medication could be more than anyone could afford in a month! He talks about it frequently, and he is very open about his feelings in how he cannot serve his patients as well as he wants, due to mainly the governments fingers in it all. Those doctors in a setting like him, with an office staff that is at least 7 or 8 people, all of the salaries and so forth, and I know by looking at what my Advantage plan "pays" him, honestly, he probably "loses" money on just me for one, when he fills my pump!!! I know for a fact he was when they were having to still do it over at the hospital in outpatient! They got "what little was paid" but most of that was MY OWN MONEY for my co-pay for outpatient! He was not getting a dime for months and months. Then after winding out of the bureacratic red tape of the government (that by the way MAKES HIM have special software in his office on his computers if he has Medicare patients that costs him something like 75,000.00 or more just at the beginning! So, finally after over a year of fighting over the "rules" of the games played, he can now refill my pump in the office. But. still he really only makes again about what comes out of "my pocket" which is the $40.00 co-pay. My insurance basically makes him "write off" the majority of the costs. Well, he nor any doctor can do a good job and try to "do no harm" as their oath says, when they either have to overload their practice with so many patients in order just to pay the bills, OR only take so many, cutting the rest of us out... for instance, and we are seeing it more and more with my Advantage Plan and now with the help for Jim... the doctors are turning away even Medicare patients! They simply are going broke... when a doctor like himself puts a pain pump in a patient like mine, his costs are high of course. But,, when he has to wait 2 YEARS, yes I said 2 YEARS & finally a "judge" tell Medicare to pay him for those patients, it is no wonder they are having to not take patients with these types of health coverage anymore. For that, it is almost blasphemy of our constitution, when we as a nation refuse to "HELP OUR OWN PEOPLE" stay well and out of pain!!! I witness this type of stuff daily due to the advocacy, volunteer, and ambassador I try to help out with as much as possible. I try my best to GIVE VOICE to ALL of US & I also mean people with "regular" health insurance also. I KNOW how much my own type of infusion medication for just ONE infusion costs, and what they expected ME to pay out of my own pocket! And I am supposed to have 2 infusions, 2 weeks apart, every 4 to 6 months! I am looking at over $1,500.00 for ONE!!!! So, I can imagine the financial burden you have to be enduring with your types of medications, doctors and the care you need!!!! I was relieved to see they are putting on another "event" for you! I just know those financial costs start soaring when you must have to have that type of care. It is as I said almost blasphemy to the American People! We can take millions of dollars over to other countries to help them, but we can't even FIRST take care of our own people!!! And I am certainly ALL FOR HELPING out other countries, I realize MANY of them are in much more burden, with basically no health care, and when we can any and all of the nations that can afford it should help out. BUT!!!! NOT BEFORE we GIVE OUR OWN RIGHT HERE what they need first! Take care of those that are right here, for instance our own food bank had a huge article in the local paper last night, pleading for money! They usually ask for donations of non perishables, good used clothing etc... but they came out and thanked all of us for the donations from the postal service we just did, BUT they are basically OUT OF MEAT! Things that are perishable, and they usually have enough finances to squeeze by for, now they are just about broke when it comes to providing our own in our community one of the basic things they need nutrition wise. It just made me so sad and mad that a community such as ours (and I know many families are strapped and cannot give, because they are the very ones that NEED the help) but we have enough corporate sponsorships, & those that can donate. Yet, as we all know just as I said about even some physicians, the entire nation, the entire world, is strapped for cash, as far as us "down" near what I am sad to say, but it is the truth "poverty level". Anyway, enough of my "rambling", except for the fact I am "able" at least for this moment "able to ramble" again. Honestly, I have felt my "voice" that allows me to write etc... had possibly left for good. But, one moment of being able to express my thoughts, even though they are rambling... is a good thing Rhia

"Empowerment" When All of Life "Strength" that had Sustained You - Suddenly is Gone - as I Thief in the Night

Honestly, I am here to write, yet I am not sure the words shall even come. The other day I had posted on Facebook and one of my friends there mentioned "I wished I had the knowledge and know how to write things, and say things as you do, Rhia".
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.

I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".


May 1st, 2014


Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.

although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.

I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.

What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.

May 26th 2014

It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.

I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....

Trying to Place "priorities" in the right spot! Difficult to do when you suffer a Chronic Illness

I just said that I was going to go "rest" and watch a movie with my dogs. After all, I am just barely a week out of "major surgery", even though laparoscopic, nonetheless, major anyway, as my Surgeon, Dr. Sullivan reminded me yesterday. I went in for my week recheck, knowing he would turn me loose to ride my exercise bike... Well, his answer was an emphatic NO! NOT for 6 WEEKS!

I gave him a bit of an evil look, and he began to tell me... okay ride that bike, incumbent or not, and when you come back, and those "mesh" panels have pulled away, the next surgery will be big incisions, and not pleasant at all. So, of course to the best of my ability, I am abiding by doctors rules... so today at least although windy as hell, warm enough that I made my 30 minute or so jaunt around our long driveway. So, I did get some exercise in. :)

And I realize he is right... if I did something stupid, and pulled what he has done loose, then the repair of that would be a much more difficult surgery, that would probably mean a hospital stay. I still can't fathom riding that stupid bike would hurt, but okay, I will behave for now.

I am still sore, still purple from my navel, all the way down to my thighs... yes EVERY PIECE of me, is "purple". I won't give the "details" but you can get the jest of it all, since the hernia's are right at the pubic bone, and blood travels downward, when healing begins, thus due to gravity, several "parts" on me that are not usually purple sure are now.

I had to laugh when I was telling him. He basically just came right out and said it, and I sat giggling and agreed ALL of me was bruised and purple!

I am just so disgusted with everything right now, I won't even begin to get into all that has happened in just a few short days... but I will say between the ignorant people at my insurance company, and the stupidity of the "billers" at the hospital where I have my infusions, along with (if I get another automated stupid Call from Humana I am going to scream)!!! I want to say to that recording, QUIT spending MONEY on these stupid calls and pay my damned bills! Of course they see "coding" is wrong, but rather than question it, they just pay it wrong or right... and even if they "underpay" or believe me I had them overpay a year ago or so, and called to tell them they paid for blood and lab work that DID NOT belong to me... 4,000.00 worth! And honestly, I don't think they cared... But they sure as heck care when "their" premiums aren't paid..

I spent most of my walk in deep thought today. In fact my husband said I looked almost upset... but not really at all. I am more in this place that I have to "split" my time. I desperately have to go allow myself to work on my book, and post more of my "own" stuff here on my blog. Not that what I am doing is not awesome, because it is. But, more along the lines of I HAVE to for my OWN SANITY get back to writing my book. No more of this waxing and waning... or feeling fearful... it is time to put that "foot" in the door, and go for it.

So, that is where my thoughts have been this afternoon.

Actually this morning, I just about have the "mini-manual" and all of the "Hubs" and sites set up with the correct permissions and so forth. I just hope they will be able to decipher my manual.

But, I HAVE GOT TO ORGANIZE and split my time up between my advocacy and my own blog and book. I have been so far out on a limb, with all of my new responsibilities with all of the Advocacy and Volunteer work (which I am THRILLED to do), but in between all of that, I've kind of lost my own "path" up the mountain to get my book written and published. Along with not overwhelming my blog, and FB page with too much of one thing, yet not nearly enough of "me"... which is why I do this... for YOU and for ME... so I have got to stick Rhia back into the picture as of exactly who I am, and not lose all contact of what my very real goal is... to write that book, and to have the very best blog I can.

While I walked... I talked... to myself. I have been faced with "one" reason as to why I won't start the first chapter... and "fear" is the only thing I can come up with is "Fear".... not sure what kind of fear, or what I am frightened of... but it seems fear holds me back from putting my eyes on the goal, and putting my fingers on these keys. As Natalie Goldberg says, WRITE...Write Daily... even if you fill notebooks full of crap, write it anyway.... and in my heart of hearts, I know that....

So, if I seem a bit "pre-occupied", or a bit distant over the next few weeks, I am in the process of mentally sorting out all of this. I want so badly to get that book written I can almost taste it. So, as Tiffany said today in a post on Facebook. I have got to put one foot down and the next one in front of it, or it shall not write itself....


I think right now must be a very difficult time of the year for many of it seems.... each person I come in contact with, is having hell on some level....

May be would should have named this Hell 2014!!!!

Come and See Rhia "Me" This Afternoon at 5:00 pm ET - Talking about my Blog!!!

You can Endorse your favorite WEGO Health Activist Daily!

I did not realize you can still go into WEGO Health Activists Awards and "ENDORSE" DAILY those that have been chose as "NOMINEES!!!! I was not aware of it until early this morning, so I did want to let everyone know you still have a "voice" in the 14 categories of awards to give your favorite Health Advocates a "Thumbs Up"!!!!!

My link is:
    https://awards.wegohealth.com/nominees/rhia-s-autoimmune-arthritic-systemic-life-1998

http://www.wegohealth.com

Now, of course I would LOVE YOUR "Endorsement" for "Best in Show - Blog", but I wanted all the Nominee's to have a chance to be endorsed!

"Unwell" ... and if you stay long enough, you shall find and see a very different side of me...

....Right Now I know I am a bit IMPAIRED....

cont. from FB post.

...    for me it is worth mentioning. I became a HUGE" Matchbox 20 “  fan when I was living in Seattle. I had bought their first two CD’s(and yes then CD’s were still a huge market) LOL! Both of them really had some songs on their that “not only touched me back then” BUT it was as if every word they had written, sang, and played music to spoke to this very inner core of my being. I recall walking on Alki (West Seattle looking over the Sound back to the City) Beach, and I played those two CD’s and could walk for hours. There is something un EVERY song, that Rod Thomas sings that just expresses (even now and especially back then) in which sounded like many of my poems and short prose. My live at that time was such an incredibly  wondrous, almost esoteric tempo to it, thus something about most of those lyrics, just reached out and “grabbed” me. Anyone that is a Matchbox Twenty fan, knows the song, “Unwell”. It seemed to be the “theme” of my life at that time! Now, I’m not saying “illness” as far as being physically sick, I really was not “mentally” or “emotionally” challenged either. Yet, for some of those looking outside to within me, may have thought to themselves, she seems a little “Unwell”! The fact was those years in Seattle, especially the last three, were the years that taught me SO MUCH in regards to my strength in all ways, my courage to venture out, to a HUGE city, thousands of miles from any family, or anyone I really “knew” that well; in more ways than I can count, I felt each day, I was “Less” “UNWELL”. Not only all of the above, but I rented my own apartment all by myself (may sound silly to some but for me it was a first; I bought my “own” first “very good” used Honda & knew without any help I could pay my car payment, living expenses, and so on all by myself. I “gained” an independence in my those years more than any other in a lifetime! I interviewed all through the downtown part of the city (LOL! anyone who knows Seattle, knows it has some HUGE hills to go up and down in with very busy city traffic), and in fact had taken two previous jobs I had loved being an apartment manager at both! This new one was at a banking institute and at that time it was MEGA busy due to ALL the interest rates, and the “Fannie May” and all of that boon at that time. I got hired on to help be the assistant to the lady that did all of the last paperwork for home loans. I had to know everything from what a Title Policy needed and looked for, the note, the deed of trust, insurance, flood insurance, all of the truth in lending information….. I was responsible for making sure we had ALL of that paperwork and it was correct before they could “close” on the home loan. We also “sold” off “blocks” of them. Of course that was to have more funds that would ultimately turn into more blocks of loans that were sold off also. You get the picture. My salary was MORE money that I had ever made at any job in my life! Now even though was was a fact, I still had those rent, car and living expenses to think about. But I had figured all of that out and knew I would be fine. :) I got insurance coverage, I kind of worked my “own” hours. I was a morning person. So, I would come in at 7 am, way before any of the rest of them showed up. My direct boss, bless her heart had a young son, she was single, or about to be, and she usually showed up about 9:45 or so. LOL!! That mattered not, because as soon as 8 hours rolled around, I could leave. So, I went home early most days also. )BY THE WAY this is PRE AUTOIMMUNE ILLNESSES DIAGNOSIS) days… I did suffer from severe migraines, did all my life, and they put me down at least 2 days when I had one. Anyway, dream life for me… not rich by no means at all. But, I saved a bit here and there and would buy a new outfit, or treat myself to something like a little TV I bought for my apartment back then, etc. Anyway, I am sure many people that “knew” me then, often wondered if I didn’t have a “screw or two loose”, or was missing a few cards from the deck, a brick or two out of the wall etc… because I was “eccentric”. I “danced” life to my own tunes playing in my head. I wrote more poetry and short prose there than ever. I didn’t have “friends” per se, other than some online that we had known one another for a long time. I dressed as I wanted (at that time I only weighed like 118 pounds and had a waistline that was tiny like Dolly Parton’s… BUT not the “TOP” of the hour glass like she did” HAHAHA!!… I loved clothes and shoes… yet with it just me, and my bills, I bargain hunted on the weekends at the Mall nearby, and bought one thing etc… as I could afford it. Yet, even though I felt “business” dressed, and I was… I honestly believe the supervisor OVER my own supervisor was quite jealous! Never did figure that one out… the ONLY thing I DID figure out is that she was a “backstabbing, manipulating, ladder climbing, crush the persons under you, and a plain “witch” of a boss and a woman. Okay, now to pull all of this “insanity” together… Hey good word for this “insanity” …….LOL!!! That song by Rob Thomas” “ Unwell” was the theme of my life… I even would quote some of it at times when it was appropriate, “Oh, no, I not crazy, I’m just a little “Unwell”… and if you stay you will see a different side of me”. I still “dance to my own “weird” tune inside my head”…. I am NOT one to “go along” with the crowds, and I REFUSE to HURT< BACKSTAB, MANIPULATE …. and all of those other “nasty words” to ANYONE! I am NOT a Ladder climber! And if I did NOT get the “promotion” or raise for some reason, as far as I was concerned, then I needed to do a “better” job… and those things like more money, a further up position, more responsibility… all would come in good time. I remain the same. I will “take up” for the guy or gal being stomped on, I think that is why I just about HATE politics, I am NOT a “used car sale man” (even hough I did do that for a few months in my twenties), … you get the picture… if MY OWN SKILLS, personality, aura, …. does not put me in that place, then I need to “turn my sails” a different direction and get with the winds of change that shall make my sail into my own smooth river happen. There are so many days, that I say just this… I’m not Crazy, I’m just a little Unwell, and if you will stay long enough, you shall see a different side of me…. and it is very true… even here in Facebook, a few of those who have gotten to really “know” ME, not just the illnesses me, etc… but this complex, but simple, conundrum, and dichotomy that makes up the wholeness that I am… of course the “autoimmune illnesses” and age have “changed” me in many ways… yet that creative, tend to flow on a different rivers path “me” is still very much alive and “Well”!!!!  “She” does not show up as much as far as to others outside my very personal life very much, yet, if you “stay” a while… you shall see that “different side” of me… … And to “honor” that song… Here are the lyrics… and they just tell a story that was a piece of my lifetime….

 "UnWell" 

           Lyrics  written by Rob Thomas off of Matchbox Twenty 

"More Than You Think You Are CD"

All day staring at the ceiling

Making friends with shadows on my wall

All night hearing voices telling me

That I should get some sleep

Because tomorrow might be good for something

Hold on

Feeling like Im headed for a breakdown

And I don't know why

[chorus]

But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired

I know right now you don't care

But soon enough you're gonna think of me

And how I used to be...me

Im talking to myself in public

Dodging glances on the train

And I know, I know they've all been talking about me

I can hear them whisper

And it makes me think there must be something wrong with me

Out of all the hours thinking

Somehow Ive lost my mind

[chorus]

But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired

I know right now you don't care

But soon enough you're gonna think of me

And how I used to be

Ive been talking in my sleep

Pretty soon they'll come to get me

Yeah, they're taking me away

[chorus]

But Im not crazy, Im just a little unwell

I know right now you can't tell

But stay awhile and maybe then you'll see

A different side of me

Im not crazy, Im just a little impaired

I know right now you don't care

But soon enough you're gonna think of me

And how I used to be

Yeah, how I used to be

How I used to be

Well, Im just a little unwell

How I used to be

How I used to be

Im just a little unwell

DREAMS DO COME TRUE!!! Even for the weary and broken hearted!!! This is HUGE NEWS!!!!!

OKAY!!!!!!!!THIS is HUGE!!!!!!!!!! About 3 weeks ago I got an email from the Arthritis.org organization. It was for a "grant application" to go to the get a complete GRANT AWARD to go to the 2014 Arthritis Foundation's Advocacy Summit in Washington D.C. in March... ALL EXPENSES PAID!!! Well, of course I figured I would never hear back, and about 10 minutes ago I received an email from a lady there and I AM GOING TO WASHINGTON D.C. IN MARCH TO BE THERE AT THE SUMMIT...ALL EXPENSES PAID!!!!!! PMG!!!! MY OTHER DREAM to stand on the "White House Steps" and "tell my story" is NOW A DREAM COME TRUE!!!!!!! I have read the email 5 times and I still cannot believe my eyes!!!!! This is so huge words again cannot express how  many emotions and feelings are with me right now!!!!!! It will be March 24th through the 26th!!!!  I've got to respond and of course it is YES!!!!! I am not sure exactly what I said in that lengthy grant application but SOMEONE IS LOOKING OUT for me now!!!!!! Lord, I can't even type!!!!!!   Rhia





                                                             

       

                                            http://www.arthritis.org/

I will give more details tomorrow when I am still SHOCKED, BUT a bit back down to "Earth"!!!!! I have to say, and I do not want at all to sound conceited, BUT HONESTLY I am PROUD of myself, and I feel I truly deserve this opportunity to SPEAK OUT for ALL of us suffering from these diseases!!! Diseases that more often than NOT RUIN Our Quality of Life!!! Believe me, if the Lord does let me get there, every thing I do and say will represent ALL of US!!!!!!   

Blogging My "Real" Life as an Autoimmune Arthritis "Victim"

Some May find my "Blog" a bit Different, so I want to give more of "me" to you... 

I realize that my blog may be a bit "rough around the edges" at times. I would much rather tell it like it is daily in my life. I prefer not to "sugar coat" daily living with autoimmune arthritis, chronic pain, and health issues that almost control my every waking minute!

So, rather than try to sit here, and find ways to give people a look at what myself and my family go through in reality. Doing that to me, is giving you, as another victim of these horrid illnesses a chance to know it is "okay" to be angry, upset, have bad days, say what you feel, not sugar coat your own reality, not have to try and hide the fact that your life is also just a mess at times because these illnesses overtake every step you make.

When you have a flare, nothing is "nice". Everything "sucks". Life is truly Hell! So, I could write about my medications, or find anything else to sit here and say, but that would not be what I need to give those who are following me a "false sense" of the days when you feel like you've been run over my a train! Times when you are on your sofa, or in bed, wishing you could have a break from pain, fatigue, shingles, mouth ulcers, rashes, stomach issues, kidney problems, medications that cause side effects, and this list goes on and on.

When these Autoimmune Diseases decide to enter your life, nothing, and I mean NOTHING is the same!!! You have to "adjust" your life in all ways. There are things you can't do sometimes. Like go out with the girls shopping, or meet the guys after work for a beer. Family get togethers, may find you smack middle in a horrible flare, or worn down from a new infusion, thus you feel guilty yet you feel like you will just have to sit this one out, (probably more like lay this one out). Your "normal" routine of life is completely turned upside down. Often you wake up with pain, and stiffness, that makes you have to take additional time to get up and get going. You find yourself slower at everything. It once took me about half an hour to get dressed to go somewhere. Now I better start at the very LEAST 2 hours ahead of time. Sometimes more than that, depending how I feel that day. You may not have the strength to do laundry, vacuum, dust, clean the bathroom, and make a fabulous dinner. More than likely if you get a couple of things done, and a meal on the table, that is a "good day". Shopping becomes a living nightmare. If you have a huge market or are going to a large store such as "Wally World" by the time you get in from the parking lot, you feel as if you walked a mile. Then if you are truly shopping with an entire list of things, that means "hours" of going through that humongous store!!! Then if no one is with you, that means taking that entire basket full to your vehicle, loading your purchase into your vehicle, and then trying to put a basket somewhere hoping one of their places for baskets is close!!! Plus, I bet many of you have this happen... I have a "disabled parking" plackard. My orthopedic surgeon wanted me to have one when I went through all of those knee replacements, then just all of the other illnesses, shoulder replacement, neck surgery... so I have one.
If you are not absolutely limping, have a crutch, or in some way look "disabled" boy are there the "looks" that you get from others!!! Thus the business about you do not look "disabled" or sick! Now I am one that uses mine sometimes, and at other times I park in a regular spot. If I am alone, and I am there to buy a large bill of groceries, or I am in a flare, not well, weather truly bad, I use mine. But if my husband's with me, or I am feeling okay etc... and especially if there is only one left, then I just ry to park in a normal spot so someone else can use it.

There are so many ways our lives are different. Some of those differences are just almost too difficult to deal with. Vacations you may miss, your hobbies that you used to love. I have a dear friend who loves sports. She used to play baseball, softball, and loved so many sports, yet RA has damaged her wrist and hand, thus that ended her ever playing ball, or other sports she so loves again. I hear story after story. For me, things such as running, snow skiing, mowing my lawn and doing yard work is out of the question. Bless my neighbors heart, he sees I've bought plants, or need to weed the flower beds, or mow, and he insists on doing all of it, and never wants to take a dime for helping. But I know he and his wife and two kids have a difficult time making ends meet, so I always give him money and tell him it is "for the kids"... LOL Then he will take it. :)

Sometimes we see family and friends all but disappear from our lives. It could be for several reasons. One might be there are those that just don't do well around someone who is "chronically" ill. Not in a bad way, but they can't take watching you in pain and suffering. So, they tend to not be around as much as they may have been. Others are just "busy". Since you have "slowed" down, and they are still in that "run, run run" mode, they don't want to be slowed down due to your illness. It sounds horrible but I know it's true. Others just fear the entire ordeal. Either they "fear" it is contagious (sounds ridiculous, but I had someone ask me if it was), or they fear it will cause them to be in a "mental anguish" if they see you in a state of illness. Some are in disbelief that you are that sick. Some family and friends are in "denial". They feel you are making all of it up. They feel it is just like, okay so your knees hurt, or your wrists hurt, well others have "arthritis" & they are up and doing fine. Some think you are a hypochondriac. And that if you would just stop all of those "harmful medications" and take vitamins, eat "right, exercise,  you would "feel better". Or there are those that every thing they see online or on the Television they think it is what you need! My Mom is bad about that? She doesn't sleep, so she watches those stupid "info-mericals" all night. Then when I go over to her house, she has all of these names of rubs, pills, etc. that should "help me". So, I have to come home, get online, prove to her the stuff is pure "quackery" and let her know none of it will help me, nor anyone else! Bless her heart, she is still in that "zone" due to her age, that every thing she sees, hears, reads, she totally thinks it is the truth! She gets phone calls from sales telemarketers constantly. She used to listen to them6, and believe every word they said. I had to put a "no solicitors" sign on her front door. Again she was constantly bombarded with people trying to "pave her driveway", or "insurance her water pipes", or "save her money on her Electric bill".

Speaking of my Mom. I am here to help her. I am an only child, thus I feel it is my responsibility since my Dad passed away in 2005 from complications of a knee replacement. She was and still is in many ways completely clueless about the world. Even small things like using a "debit" card, or putting gas in her car, calling in a prescription refill & putting it in the "automated system". She would not even learn how to use a DVD player we bought her. Dad did it all. Bill paying, handling money and investments, from putting gas in the car, to mowing the lawn, or taking care of just about any and everything. Which was great, BUT he NEVER taught Mom how to do any of it!!! So, when he passed away, it was total chaos here. We did move here, from Seattle, so we both would be close enough to help her. Of course I was already in need of several surgeries, so my first couple of years here were spent in the operating room and recovering. I helped her until I finally got my total disability rewarded, then it I could finally get to the doctors I needed to get to. At the time though I had not gotten the "autoimmune arthritis" diagnosis. It became apparent as the orthopedic surgeon was in my knees, shoulders, and so forth that this was not some regular "osteoarthritis", there was much more there in damage than it could have done so quickly and so early in my life. It was not long after a couple of surgeries on my shoulder and both knees, that my PCP put it all together and diagnosed the "autoimmune arthritic" illnesses. I began to have all types of symptoms.

Back to Mom now that I've given you a bit of "history" about her. So, I also have to do many things for her. It is not usually a huge issue, but there are days, or even weeks that I am busy enough, or have a flare, that trying to take care of "me", and then trying to take care of the house, and then all of her things going on, becomes almost overwhelming. You would not believe the mess that I had to go through with her insurance and the surgery center to get her surgery bill paid correctly! I spent over 6 months trying to get the to "code" the surgery correctly so the insurance would pay. I was treated like trash, I was spoken to like I was an idiot, I was "lied" to, because for 3 months I was told the "supervisor" had to handle it, and she was "out" with surgery. It was all a bunch of bull. I even went out there face to face and they basically said I was wrong, and I needed to just leave. That was in front of all the people in the waiting area! Well, I knew that the orthopedic surgeon did have his own personal funds in the center. Several of our doctors got together and opened it, with another company's help. So. I went to the "big boys". I wrote a letter explaining ALL of it. I had names, dates, what they said, etc. and I told it all. I took it to my doctor's office. About 2 days later, not only did I get a call from my doctor, I got a call from the head gentleman over the entire center, with a HUGE apology!!!!! They were "grafling" at my feet, trying to make amends for the stupidity and ignorance of their "staff" the worked with filing insurance claims. Plus not only was Mom one of the patients that had the same insurance and they had tried to say they owed money that they didn't owe either. The point of me talking about this, IS because all of that took my time up, and lots of it. Even when I was home, ill and certainly not feeling like talking to those "morons", I did it, because it had to be done.

I realize that I certainly not the ONLY HUMAN on this Earth with some type of chronic illness/pain. I also have come to a real eye opener. That is we have a tremendous amount of our population all over the WORLD suffering from Autoimmune Arthritic Diseases!!! And in bringing those facts into the entire realm of this blog post, they also are subject to losing friends, relatives, not having a care taker, or they are a "care taker" for a family member or even possibly a close friend!

So, how do we "balance" the situations? We NEVER know when a flare or symptoms are going to pop up. We may feel great in the morning and have shingles, fatigue, pain, or any number of problems within hours. So, it is almost impossible to try and "estimate" how much or how little you will have the "physical" ability to do. The ONLY way I can do things, is try to make arrangements ahead of time. But, if somethings happens to me, or I am ill, I try to have an "alternative" plan ready. Fortunately, up until about 6 weeks ago, my husband can "step in" and take Mom to the doctor, or run an errand, or whatever she might need, he can handle it.

Of course as "Rhia's Law" might have it, my husband has been in terrible pain. Between going to a clinic and having a MRI, that shows the pain in his shoulder is coming from his neck. Well, I can certainly relate. Same Story with my last surgery. Almost my entire cervical spine was a mess. I had a 4 level discectomy, fusion and 2 replacement discs. So, I totally understand his situation. But, now my "caretaker" is out of pocket. I've had to basically "buck up" and pull not only My "Weight", but HIS and MOM'S also. Now he is in bed with some type of horrible flu, bronchitis or something. It happened suddenly night before last, and I pray I don't get it. I've disinfected everything in this house 10 times! And I am staying as far away as I can. I fear if I catch what he has, I'll be in the hospital with my immune system as it is. I've already been exposed to more than I care to think about having to be at clinics several times with my husband and Mom.

So, WE (WE - as in ALL of US with AUTOIMMUNE ARTHRITIC DISEASES) can and do have a great many "mountains" to climb. We also know about those deep valley's. They can take you in so quickly and put you right down at the foot of the mountain you just climbed up. Of course we also have "rewards" in the sense of the term when it comes to "us", "we" when the time comes for us to assist those like ourselves into a direction of wellness!!! When we use our voices, social media, writing, blogging, sharing, volunteering; ALL of those things are divine intervention that shall lead to better and quicker diagnosis, much more aggressive and earlier treatments, that then can HALT some or much of the damage these diseases do!!! It is "too late" for me. I have so much "damage" that even though we are trying to aggressively work on it, I already have most of my joints either replaced, and the others will probably have to be, hopefully not, but it is a good possibility I face that in my future.

BUT, until the moment I can no longer type (so I will find a program I can speak into and it will type for me), my heart, my soul, and my mind is set on the GOAL of HELPING others! Standing up with other like minded wonderful people that also share in my heart's goal!!! Through our struggle, and trepidations. we have found STRENGTH today and we stand United in our goals to change the face of Autoimmune Arthritis Diseases forever!

So, this is much of "my life"... day to day... and now the part here at the last is the very best. It is my new opportunity I've found with the IFAA, as an Active Volunteer. I've also been able to be able to give my own story to WEGO when I was invited to be on a panel. My blogging shall also continue to be not only here but on the IFAA's blog site. And with the upcoming WAAD14!!!! there shall be AMAZING THINGS FOR EVERYONE TO GET INTO THE Online CONVENTION in early 2014!!! There will be more upcoming information as we get closer to it! So, I'll post more when I know details... Take care of YOU!!!! Then you can help others....

Chronically Ill Unite September 14 to Blog About Invisible Illness Issues

9/9/09 – SBWIRE – SAN DIEGO — Who would guess that nearly half of the U.S. population lives with a chronic illness? But according to a study by the Robert Wood Johnson Foundation over 133 million people have an illness or condition, most of which are invisible, and many that cause daily pain. Illnesses can range from Reflex Sympathetic Dystrophy to diabetes, multiple sclerosis to fibromyalgia, or painful conditions like back pain and migraines.
With 75 percent of internet users using the internet for health information (Pew Internet Project, 8/08) and many of them seeking support, thousands of bloggers now post daily journals about the emotional challenges they face with daily chronic pain.
National Invisible Chronic Illness Awareness Week, September 14-20, 2009, invites bloggers to have a significant role in their awareness campaign. For example, part of their outreach has been featuring guest bloggers on their own web site invisibleillnessweek.com , as well as inviting bloggers around the globe to commit to blogging about invisible illness issues. To help spread the word they have also create a meme, “30 Things About My Invisible Illness You May Not Know” that people have posted on Facebook, blogs and other social networks.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though our illnesses and symptoms may vary, we still have a great deal in common. We can learn from one another about coping and finding the balance of taking care of ourselves yet living life to the fullest.” Copen says patient blogs aren’t depressing like healthy people may assume. “Illness bloggers don’t typically dwell on the logistics of symptoms, lab tests, or hospital stays. Instead, they write on everyday topics and how their illness impacts their families, finances, careers. They may discuss patient advocacy issues, but they also write about vacationing with an illness or dating when you have a chronic illness.”
Invisible Illness Week was recently the host of Grand Rounds, the largest medical blog carnival on the internet.
Over 300 people have officially committed to blogging for Invisible Illness Week so far and many are sharing on their Facebook notes page or other social network. Copen encourages those who do not have a blog to shares something about their illness with Facebook friends, a few Twitter posts, or even in the comments section of the invisibleillnessweek.com web site.
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillnessweek.com for details. Invisible
Illness Week’s highlight is a 5-day virtual conference with 20 speakers that can be heard online for free on a topics such as marriage with illness, applying for disability, setting boundaries, and when your child is ill.
Copen is also the founder of Rest Ministries which sponsors the event and IllnessTwitters.ning.com for anyone who “tweets” on health or medical conditions.