Anticipating the 2015 Arthritis Foundation Annual "Summit on the Hill"!

A dear friend of mine that I met in fact at last years Annual Summit on the Hill by the Arthritis Foundation had posted and asked me if I had filled out my "Travel Award". Well, yes I have, and as I told her, I had made "Platinum Ambassador" thus I believed it was my "obligation" to come to the Summit. Of course I would try to go whether I had made that or not. My entire world evolved around that Summit last year in March. I had in fact "won" a Travel Award, after putting my application in at the very last moment. I felt I had probably missed out since I was so late in even knowing about being able to go by getting a "Travel Award". So, by the time I filled out my paperwork and emailed it in, I feared I would be too late. But, within a few days, I received a "glowing email" that I had in fact been granted a Travel Award to D.C. for the Summit that took place and does take place each year around the 24th through about the 26th of March. I will never forget how much I got out of the Summit even being my very first time there, and just how much more I wanted to be a "better voice"... activist, advocate, blogger, writer, and then I wanted of course to be an Ambassador for the AF. I was not sure I would be able to get enough advocacy work in to make "Platinum" especially after my husbands accident, but I was SURE I would give it all I could in between everything that took place for those months following that fateful day in March. I've played it over and over in my mind. I have spoken about it numerous times online, and in person. I've written about it, blogged about it, and still to this day, at times it feels almost surreal.
It is almost impossible to believe all that happened at that time did. What is more impossible to believe is that the entire ordeal with the wreck that Jim went through, the months of hospital and rehab after that, and then months of outpatient rehab, the red tape that still goes on and on with the lawyer, and all of the fighting we have done to get him into physicians etc... it is truly a night mare. Maybe that is truly why I have night terrors almost every night of my life. There are not many nights that I don't wake up and I cannot breathe. I am "suffocating" in one way or the other in the night terror, but I am also in real life having massive problems breathing. Most nights I am up, trying half asleep, half awake and still almost in a dream like state trying to find my inhaler and the nasal spray, so I can once again breathe. It is crazy insane, but it is so very, very true.

I've done a good bit of research on night terrors, and of course the amount of stress from the accident in itself is enough to send me into a frenzy. When you add in my own health problems, and the fact that I have had to endure a great deal of my own pain once again, and the entire situation with my teeth, or no teeth now, the full set of dentures... of which the bottoms STILL will NOT stay in place, thus I am still not eating as I should, and by the end of the day, I just want to take the damned things out and throw them across the lawn into the street and say to hell with all of it. Of course the issue of also having "complications" which for me, what is new, yet they always seem to surprise me... of which involves my sinus cavity on the right side... and it is the maxillary sinus passage, which I have already been told, that I need to have repaired, I am sure has sometimes a great deal of reasoning behind my night mare like breathing problems. But, when you are facing another 7,000.00 PLUS out of pocket since you can't get a damned dental plan worth a flip, OR as this should be paid by regular Health Insurance, because a "chronic HEALTH Illness" is what caused me to lose my teeth in the first place should pay a portion of it. But, I have fought "tooth and nail" (no pun intended)... and I have just gotten way too weary to fight them anymore about paying any of it. Of course now, I changed insurance on January 1, thus you can believe that makes it entirely impossible to get either one of them to pay a dime ....

There is "after the fact of me already being out thousands" a "non-profit" that is for dental issues, mainly caused from autoimmune illnesses or cancer patients. But, there are way too many people needing the help versus the dentists and oral surgeons that will try and help out of generosity and not expecting either to have lots of people that will help.

Baylor dental college in Dallas also has certain things students do, while the professors and doctors watch, but you will much pay like 278.00 just to walk in the door. Then the 78.00 is a "fee" non-refundable, and the 200.00 is to apply towards care you are given, or if they can't help you then you get the 200.00 back. I know I went there to have my 4 wisdom teeth cut out all at once. In fact I was newly married, and my Dad drove me up there and home. I looked like a chipmunk with a full mouth of acorns for over a week. But, they charged a great deal less that having that done in a regular oral surgeons office.

As I leave behind so much "sadness" and "darkness" from 2014, I am trying my best to hold onto 2015 being a positive year, full of prosperity, not just financially, but more in the "domain" if you will, of getting things accomplished. I am trying to stay as far away as I can of thinking about all that took place in 2014, trying to look as each day a new one, that can mean much more as far as my writing, my advocacy, my activism, not only online, through my blog and writing, but I hope to be more involved in trying to find a way for my entire community of Ennis and Ellis County to become knowledgeable about the Autoimmune Illnesses, their symptoms, their lack of being able to be diagnosed, and to educate those that are surrounding me day in and day out right here, even as next door neighbors. I've come to see as of late, that there are MANY people that have some type of AI disease, FM, CFS/ME, Chronic Pain, right here that I could help, if given some assistance on how to go about starting an "awareness campaign" locally. We are SO LACKING in the understanding of Lupus, RA, Sjogren's (boy this one we REALLY NEED some understanding on), and MS... Raynaud's, Diabetes 2, autoimmune arthritis, autoimmune psoriatic arthritis... and the list goes on and on.

In fact, just about the time I was finally "diagnosed" with first MTCD & UCTD.. that turned into RA, Lupus, and the Sjogren's and Raynaud's was showing immediately when the MCTD first became the "name" of what was going on with me. There were two gentlemen (which is rare in the first place for men to have AI illnesses) both of them around the same age, both going to the church we were going to at that time, and both had Grave's Disease. What makes it even more unusual is men for the most part don't have "thyroid" issues either. Usually women have more of a propensity to have any or all of these illnesses and disorders.

So, right there being in a Church, with two guys, both almost the same age, both having Grave's disease was enough for me to absolutely know we had a much larger group of people with autoimmune illnesses. Both of then underwent treatment and both were "cured"... put into remission. My understanding is that once Grave's disease is in remission, that is permanent. Unlike many of the other AI illnesses, they "can" go into remission, but more than likely you will undergo swings of "active" disease symptoms, and then inactivity, yet there are no real "cures" for any of them.

That is why for me, I really would like to find a way, with the help of some of our community leaders, to get a group, or some type of monthly, weekly, however... crowd in a "face to face" type of environment to help them further their knowledge about their own, friends, or loved ones AI illnesses. I also would love to help people and physicians in "learning" how to talk about these diseases, along with how to talk about medications, side effects, long term "goals" or what to expect from having an AI or more than one, and what that will do in the years to come. Will more medication be needed, will hopefully there be more research, and possibly medications coming out? All of the questions that either patients themselves feel it is "wrong" to ask, or for the doctors who honestly are not as well versed on these illnesses, and how they address them to their patients. This includes all medical staff. From the person who answers the phone, to the nurses, lab techs, doctors, and other staff ALL of them need to be very well versed in these dreadful illnesses. For one thing, you maybe "well" and feel fit as a fiddle one moment, and within hours be severely ill and need hospitalization. Often times there is not a "warning" of impending AI and their flares. They can come on within moments, and you don't even know what hit you until it has. Unlike the flu, a cold, and other illnesses where you can certain "symptoms" like a forewarning of being ill, AI's can "attack" at any time they please.

So, when I call my PCP, and the girl that answers the phone is either not aware of my patient status OR she may not know about a "flare" of Lupus... she may insist that I "come in" and be seen. Well, sometimes that is a necessary... but at times, depending on my symptoms, my doctor may allow me to fore go the trip to the office for a visit, and just come in for a corticosteroid injection and a script for a high dose tapering down 14 days round of Prednisone.

Well, as I said, if the woman that answers that phone is "new", and so forth, I may have to make an uncalled for trip to sit in that office, to get the exact same thing I asked for. So, I've exposed myself to other illnesses, especially in the Winter. I've also wasted the doctors time, my time, and caused some other patient who truly may need to have been seen, to wait for a day. So, it is truly unjust for everyone. But, if whom answers the phone either knows me well enough, OR they understand the workings of come of these diseases, he or she may already be on top writing a note, taking down the information so they can talk to the doctor BEFORE making me come in for a totally uncalled for trip.

So, there are many involved in all types of health care that should be very "up" on autoimmune illnesses, diseases, symptoms, medications, and all that wrapping them up in neat newspaper, with a bow around it.

The very latest of challenges that many of us have had to hop over, or will trail and error finally get something nailed into the heads of the medical professionals, far and wide.

Interestingly enough, the UK tends to be "up" on the latest and greatest when it comes to being the leader in new medications, clinical trials, and finding out more than just about anyone around the globe. Often times I've noticed that Britain may have a "pilot" medication in the works. As soon as it is approved by the Brit's, you can bet the USA will be setting for us to jump up, and get to scrambling together researchers, grants and funding, clinical trials, and all on the band wago. What happens often times with a situation such as that. If the "CDC" of Britain signs off on a new medication, it means that the "medication" we put into the hands of researchers here that is basically the same, may not have to cost as much and those types of medications and treatments are sometimes able to be "fast tracked" into production. So, that is great for our economy, great for the Pharmaceutical companies, patients, doctors and so forth, because it gets here, and gets the door, helping to ultimately save lives...which ALL are great events when it comes to those with chronic autoimmune, incurable. painful, night mare diseases.

As 2015 "rolls in", I am hoping it allows me to try and "roll on through" with this blog, with the Ambassador (Platinum) work, and all of the other activist activities I so want to participate in.

Wish me luck as I am preparing to once again try to write the "Ultimate Book"... and get it published. I am also working on the more "fun" book, that will include many of the TX "sayings"... different words and how they tend to have different meanings in the South and in TX.. and many of the what some might call "odd" traditions we engage in here... in the Lone Star State!

Working on a back ground graphic for the top of my Facebook page. I want to include the URL back to here. Often people may not bookmark a page, or like even though I post a "link" back to my blog in the posts, it may get moved down several slots, and then people may not be aware of how to get back to my blog...

New Year, New Ideas and hopefully a New Me in many ways... or getting back to the Old Me one of the two...

I had basically stopped thinking about playing songs, drumming and so forth after Jim's accident. At that time we did not know if he would even be able to walk, but less play the guitar. But such as all of the other miraculous things that he continues to do as he heals... brought me to a place today... that I want us to be playing and singing, as well as writing our own music again. This song hit me as I came home from the market... I have heard it several times, and just absolutely loved everything about it... so I came in and Jim grabbed his guitar, and I grabbed a mic... and we practiced and then recorded it!!! For me I was desperately wanting to know if the dentures changed my voice as far as singing. I know at times speaking they have... and I hope for the better once they can "pin down" the bottom ones.. So below I will post the lyrics...

But I do also want to put up a picture of me I took today, along with a "Happy New Year" to everyone out there.
As we close the door on 2014, many of us close it on a year of health problems, uncertainty as far as our nation, and our world. We close it on doctors, medications and insurance companies, on pharmacies, all of the ones that have not worked to help us before the new dawn of a New Year. Many of you know the trials, tribulations, and the entire host of issues for myself and my family. Never starting on on January 2014 could you have convinced me that year would be filled with such as a entire realm of horrors, from my own illness, to Jim's nightmare of an accident, that has left us still grasping at which place we may turn as we wander through almost blindly the days and nights of what is still considered unknown. Yet, through the loss of his own use of his legs, the pain, the massive damage to his spinal cord and body, it still is healing as we know. How much more will that be after March 26th, 2015 we are not sure of... it maybe that he still has healing through years to come... or it could be that after a year has ticked by, what he has in healing will be what we must accept as the most there will ever be. Don't get me wrong, we are both extremely thankful and feel blessed he has the abilities he has now. Never did we expect he would leave the hospital walking on a cane, and using a wheelchair only when he would have to do a great deal of being up walking and on his feet. Which honestly, we have been able to avoid the wheelchair all but about maybe 3 or 4 times since he got home. Yet, the sad part of that is that he does NOT get out much. He does NOT go to the store, or get out and ride around with me during errands or even leave the house much at all. His essence of leaving the house, is usually standing on the front porch and the occasional stroll around our yard. So, for that it is saddening to see him struggle with having to almost be cooped up constantly in this tiny home of ours. Then of course we have endured the months and months and more months of my loss of all of my teeth to Sjogren's and all of the evil things it does when you least expect it. It has been a mixed journey for me... one of great disheartened days. knowing now I must find a way to adjust to dentures, which I will tell you right now is NOT an EASY FEAT!!!! IF I have learned anything from this past year, it is to NEVER ask for anything expecting to get it. YOU MAY GET IT, but NEVER in a way you imagined. I prayed all my life for "pretty teeth". Which I meant more like having the money to get braces and have my own teeth "fixed"... yet I now have "pretty teeth", but they are artificial in nature, and are hard as hell to get used to. I STILL cannot eat many things I love... from lots of fresh fruits, to some things you would never think would be difficult to eat, are almost impossible for me. I still learn something new everyday about how to maneuver around eating with the things in my mouth. Plus I still have "miles" honestly to go before they are completely finished. Health and money have kind of put a "damper" on me finishing them up. So, I am still incomplete when it comes to my new pretty teeth. Alas, as others think, and some don't think this way, but I try not to wallow around in self pity and the "why me" stuff. Yet, when it seems around every twist and turn of the day's beginning to the day's end something off the cuff happens, it makes it extremely difficult to think "positive" thoughts, and keep the light of faith and hope burning brightly...
So, I wish for everyone near and far, whether friend, neighbor, family member or stranger that 2015 brings in truth of good cheer. I wish for all to have a much healthier 2015, and may many of us go into a state of "remission" from these horrid illnesses that haunt us day and night. May we find our insurance and financial woes all the better, and may somehow, someway, new ground be broken for less cost in medications that we desperately need. May the "rich world" of corporations and big business, stop for a moment, put their greediness aside and see that we as human, and chronically ill humans need to be able to afford the often life saving medications we need. May we grow stronger in our advocacy and voices. May we find our family and friends bonds ever more full of honor and strength than ever in the past. May we find a peace in our minds and hearts that can surpass the highest comet's tail, and rain down upon us, the "reign" of a new dawn, and of a healing of souls all over and around our globe. My hopes are that men and women put down their weapons, be it guns, words, swords, and vengeful ways... may we life each other up and not strike one another down with the raw wounds that hate, greed, and jealousy all so often leave behind. My hopes are that I am able to pen the greatest book, I have ever pinned yet. May my body, soul, mind and spirit allow me to finish what I have began now for several years. Yet, always "life" somewhere gets in the way.... so my entire wish for my own personal days in 2015 are to be filled with "the voice", "the muse", the talent of writing what my heart and mind want to tell everyone... May we lift one another up tonight at midnight and wish all of this and much more for all in 2015... Rhia


Here are the Lyrics to the song that brought me so much inspiration today....

LUKE BRYAN LYRICS

"Roller Coaster"

She had a cross around her neck
And a flower in her hand
That I picked from the side of Thomas Drive
On our way to the sand
We found an old wooden chair
Still warm from the sun
Pushed it back, gave me a kiss
With Bacardi on her lips
And I was done

[Chorus:]
And we spent that week wide open
Upside down beside the ocean
I didn't know where it was goin'
Just tryin' to keep my heart on the tracks
I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
Sunday came and it was over
Now she's got me twisted
Like an old beach roller coaster

The rest of those days
Turned into long crazy nights
When the music got loud
We'd sneak away from the crowd
Under the boardwalk lights
And with all the things we said
What I just can't get past
Is the way we let it end
Now I'm wonderin' where she is
Knowin' I can't get that goodbye back

[Chorus]

She's like a song playin' over and over
In my mind, where I still hold her
I had the chance and I should've told her

When we spent that week wide open
Upside down beside the ocean
I should've known where it was goin'
Still tryin' to keep my heart on the tracks
And I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
When Sunday came and it was over
Now she's got me twisted,
Yeah, I'm still twisted
Like that old beach roller coaster

Like that old beach roller coaster

Thanks to vmh1205, Daisy Garcia, pamela, Caleb DeChand, Tyler for correcting these lyrics.

"A Sweaty" Drenching and Fearful way to Wake Up...

Well, I have fussed and griped about this "sudden onset" of where I wake up in a drenching, T-Shirt, jogging pants, sheets, blanket, hair, bed kind of SWEAT!!! It has been happening now for about 4 years or so. I have asked all of my doctors and no one really gave me a straight answer. In fact, until today, I finally found out a real medical "name" for it! It is called "Primary or Secondary hyperhidrosis"!!!!

I happen to be glancing at some posts that came into the "Inspire" web blog site by the Arthritis Foundation. Low and behold there is a new post titled "Drenching Sweat"!!! So, I clicked to go and see if anyone had posted anything that might help point me to some kind of answer. I ALWAYS GET, could be your "chronic illnesses", RA, Lupus, etc... OR maybe "hormones"... these are NOT hot flashes... I am bone chilling, shaking, freezing at the same time sweating enough to wet towels down... even my robe last week one morning was totally drenched!

And the "weird" part of all, I usually NEVER SWEAT!! Very Rarely, even in the HEAT and HUMIDITY OF TEXAS, I may sweat a bit at my hair line in the Summer. But, I can work outside in the yard, etc... and yes maybe a bit, but NOTHING like this!!!

Anyway, one of the ladies had posted a link to Web M.D., that described it and gave a name for it. And yes "several" of my medications certainly could be a cause, plus the RA, Lupus and so forth.

The "oddest" thing, is the medication I use for Sjogren's. It is supposed to "help" with my salivary glands... it is called generically "Pilocarpine" or name brand Salagen. It TOPS the list with several other medications as being known to cause this!!!!  Happy, NO! I am not happy. I am not really sure that the medication does much for my salivary glands and other moisture as far as nose and eyes. But, it could certainly be a cause for this totally odd, off the wall, SWEATY RA chick!

A Bit "Bass Ackwards" - Going to be a post from about a week ago... Topics for Blogging in November - Feel Welcome to Join in...

I had mentioned in a post about a week ago that last year in November one of our Health sites had put on a "30 days in November - 30 different posts each day event". I had actually thought it was for this coming November, then found out it was actually last year they did it rather than this year of which they done in 2013. So, I decided it would be a good way for me to find some "subjects" to post on that maybe a bit different, as well as getting all of you to jump in and join me. I said I would post some "subjects" for the days of the week, to get us started, and then please if you have any subject that has something to do with illness, medications, doctors, diseases, anything medical feel free to tell us your opinions.

So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.

Here We Go:

November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.

November 2nd - How about a "List" of things you "Know" you can do...

and others you "think you may do in the future"...

i.e. (I KNOW "I can tell my own personal health story to others")

vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"

November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...

November 4th - How do you Feel about "alternative medicines" and do you use them?


November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?


November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.


November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?


November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?


November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own  condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?

November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?


So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....

How "Serious" Do you Take Your Autoimmune Diseases and Diagnosis?

I had thought about this question last night, for some unknown reason. I knew last night I needed to sit down and write about this ASAP, before the brain fog kicked in and I forgot what I wanted to say or even write about.

Yesterday, was one of those days that I had or needed to play catch-up. I needed to pick a few things up from the market, needed to make a trip over my Mom's, and as the 2 days previously, since I had gotten little to nothing done, I felt I needed to get some stuff done. Last Wednesday I had felt "fine", or well enough to dress, put my makeup on, dressed a bit more decent, and get errands completely. All of what I needed to do, meant running and trying to get everything caught up. So, off to the bank, to the cemetery, to put gas in the car (it is 2.67 here!!!!!!!  YEAH!!).. air up the tires on the car, take some magazines to the library, run into get some prescriptions of mine picked up, then to Wally World, for a few items I can't get anywhere else. I did get it all done, Then I had to come home, put all of that stuff up, get Jim, and take him to drop off some paperwork to a potential pain physician and he also needed to sign a document in front a Notary. So, we also made a 2nd trip to the bank to get that done. From there Jim needed his flu vaccine, so we headed for CVS. Well. that turned into all for naught because in the 1st place his insurance WILL NOT even pay for the flu shot, which has gone up now from about 23.00 a few years back to well over 32.00 this year!!! Yes, I know, I know - everything has gone up but damned... also there are several strains in this vaccine than used to be, but I don't buy all of that, because the pharmacies and pharmaceutical companies are RICH!   Honestly, my belief is that ALL people should be able to get the flu shot at NO COST, if they make below a certain amount of money... NOT allowing those that want the vaccine to get it, just causes more people out there that have the capacity to get sick, and run up a much higher bill that a darned flu vaccine. So, I am not sure I get that 32.00 ordeal. I just saw on the news last night how MUCH MONEY OUR COUNTRY LOSES during flu season, for those especially that DO NOT get the flu shot... and you can believe many of them WOULD had they been able to pay $5.00 for it, or whatever they feel than afford.   

All right, back on the subject that I began this entire blog post about. I have had a couple of "epiphanies" about my own chronic illnesses and chronic pain issues over the past about almost 8 months or so. I always "felt" as if I had accepted the fact that I DID have RA, Lupus, Sjögren's, and so on... along with several what I would call "sub illnesses" that have followed right along with the natural progression of these autoimmune diseases.

As I have come to figure out lately though, I really HAD NOT met these illnesses actually face to face, nor had I truly down deeply that I had not accepted that I am chronically ill, with diseases that at this time have no cures, and even though we have some medications that certainly due help to slow down the progression of some of them. I think the very first time I truly felt I was "ill" was the day my very first tooth just fell out of my mouth coming loose at the tooth/gum line for no good or practical reason. Of course I've tried to be prepared for the day I would begin to have dental issues due to the Sjogren's BUT... never was I prepared for it to happen this soon, nor that fast. From the moment the first tooth fell out, within three weeks 2 more had basically done the same. I was at the dentist more in a month than I had been all my life!!! By the time 6 months rolled around I was missing at least 7 teeth, and I believe at that time in my life, struggling with the teeth, the thought of dentures that I SWORE I WOULD NEVER have... was almost more than I could handle. Little did I know it COULD AND WOULD get worse before things would get "better"... Christmas 2013 was not the most memorable... money was very tight, I seemed to have been ill with one flare after the other, bronchitis and it did not want to go away, and even New Years came and my Birthday fell in February, and the upcoming Arthritis Foundation Summit was coming so soon in March. Yet, I had not been able to get my biologic infusion of the Rituxan (that is AFTER WE FOUGHT to get it paid for, because my insurance refused to pay all of it, thus the infusion clinic had gotten the infusions approved through their private charity program. ) But, I had had way too many issues with infections, bronchitis, & a large dose of step prednidone due to the flares, I was just down and out until the very last right--I at the last moment made a trip to our urgent care center to get some last minute treatment for a Lupus flare that had just had me down and I couldn't go (this was Friday evening and my plane was due to take off MONDAY at 6:00AM). so this was the last straw in the box per se'.

Well, someone much more MIGHTY than myself handling things. By Sunday, I was able to pack, still not feeling like jumping over the moon, but compared to the week before. So come VERY very early Monday morning. Even up until I was getting my luggage out of the car, and checking my bags it has not hit me, that I was headed for Washington DC. Once I was on the plane, settled in and on my way, it hit me, I truly WAS HEADED FOR THE SUMMIT IN D.C.!!!

After the accident on March 26th, 2014 - everything went to hell in a hand basket. I believe the night I first came home from him having that massive back surgery, it hit me square in the face, that I had CHRONIC AUTOIMMUNE ILLNESSES, and I had better get hold of myself, or I would lose it completely.

 So, for the very first time rather than this frivolous thought of "yes, I have autoimmune illnesses" that I take medications for daily. MTX, Plaquenil, and usually a biologic, now we have added Orencia in, it will be here Tuesday and Sulfasalazine. It hit me so hard, that I literally had to sit down on my chair in front of my computer. Here I was, even being a voice, an advocate, blogging about them, Facebook page and posts about them, seeing how many others suffer with these illnesses, yet, I had never really settled into the mere facts of DAMMIT the hell, I have Lupus, RA, and autoimmune illnesses... which mean forever unless someone happens to invent a cure in the next few years. My mind was spinning, my head full of thoughts... how would I survive, how will I ever be able to help Jim, how can I keep on writing my book, my blog, doing my advocacy, my activist, my Ambassador work. Will I still be able to help Mom??? Question after question rattled through my brain... and with each question, the "other side" of my thought process had an answer... and that was YES! The "answer" was much simpler than the questions were. Inside, somewhere, somehow, I knew I would be able to "handle it all"... that may mean a change in all kinds of things, and especially letting go of what "normal" used to be and begin to accept what "normal" will be as the next days, weeks, and months go by. I was more in fear of the "change in normality I believe" than I was the illnesses, or Jim's physical situation after the wreck or any of that. Change is something that is frightening to most of man and woman kind... WE are truly creatures of habit. I realize very often we don't seem to be when we are younger. But, for the most part as we age, we don't do as well with change, uprooting your roots you have put down for so long, chopping them down, and learning a new "normal" is almost impossible for some people.

I could no longer sit there trying to figure it all out in my head at the moment, because so much "unknown" lie ahead... how long will Jim be in the hospital?, and all of his physical, mental and emotional changes, it will take time. So, I "picked myself up", and I got busy with notes of what needed to be done, when, where, how and so forth. I also had a couple of things I HAD TO DO FOR ME! #1 was at the time I needed to get my Rituxan injection. I was well for a change, even though worn to nothing due to all of the drama surrounding the car accident and Jim, but I did one day go and spend about 7 hours getting the first infusion. In two weeks, I was to go back and for the 2nd round. Then I should be good to go for about 5 months.

Little did I know, before two weeks rolled around, about 5 days after the 1st infusion, I began to have the strangest things going on. I "heard" voices, I was almost to the place of hallucinating, I was not sure if I was in my own "home" or not... I could not write, barely type legibly. I was talking to the voices, all around the house and walking the floor. I paced up and down the living room through the office and into the kitchen at least 50 times maybe more. But, I could not put a finger on what was wrong. I felt "sick" in some ways, but again, I was not quite sure how. I was not really coughing, but in ways I felt a bit feverish. Finally, for some strange reason, due to the fact no matter how ill I AM I don't run fever, but I decided to check it anyway. To my surprise I was running almost 103 degree fever!!! Well, that explained the strange voices, and the oddness I was feeling but where all of it was coming from I was not sure. This was a Sunday afternoon, and that meant no doctor would be able to be contacted. I certainly did NOT want to go to the ER, too much hassle, but I did know that we have an Urgent Care Clinic here now, but whether they were open on Sundays was a stretch.

Another thing, I honestly knew I should not be driving alone. I feared having a seizure. Even though I was taking aspirin, the fever was staying fairly high. And they strange things I heard, saw and felt would and could mean I very well with fever that high have one. Thus, the alternative was to call my Mom, Which I really did NOT want to do, but there was really no other way, unless I call 911, which was ridiculous, unless I did either get the fever higher and I felt I needed medical attention extremely. Well, as the story goes on, my Mom takes me, they are open thank goodness, and I have double pneumonia... of which the physician that saw me happens to also be an ER physician at the hospital. Which was good and bad. Because I was so ill, and had all of these autoimmune issues, he felt I needed to be seen by them, and evaluated to make sure I didn't need IV antibiotics... I begged him to try anything else first, but don't send me there. After I told him about Jim, and all that was going on with everything, he reluctantly allowed me to go home with high powered antibiotics, complete sofa rest, for at least 7 days, hydrate, watch mt temp several times a day. AND if I FELT ANY WORSE or could NOT get the fever down, I was to go immediately to the ER! So, I promised I would have my meds filled, go home, and not move off the sofa for at least a week. Basically that is what I did, other than having to take out trash and changing the dogs food, water and paper... I stayed at home, watched movies, took my medication and drank loads of green tea, juice, and ate very light stuff... and it took me almost a MONTH to truly get over it all. I never developed a cough but some people don't with pneumonia. I am sure between being so ill, then going to DC on a load of prednisone, then suddenly the accident happened and I am rushed on a plane before I think I really realized it. I had been in the very cold, snowy, but not dry snow, very wet snow in DC all day long, for 2 days walking in it for hours... and to put icing on the cake all of that happened... then I took the Rituxan, so that make the cherry on the top.

That also slammed me in the gut, with a punch... if I had not had the autoimmune Illnesses I "may" not have gotten that ill. But, it could be that no matter AI or not, I still could have contracted the pneumonia. That was in early April and went on for weeks honestly, As I said above, I was not sure I would ever get over the fatigue, tiredness, dizziness, the feeling like hammered crud every morning... I ached and I was sore... and stiff... but I did ... slowly I recovered and by the Grace of God, I did without going to the hospital which was an excellent thing and a miracle.

So, twice within a month, I had been really slapped hard in the face that I had chronic illnesses, that would NEVER go away.
                                                                       
Lately, the "dreaded" head of the Wolf popped it's head up when I got to thinking about how much medication it takes to keep me well. Then I go to get the flu and pneumonia vaccines, and become suddenly "ill" for no real reason. I cannot really say that is was either one of the vaccines. I've had the flu vaccine now for years, and I had taken a pneumonia injection 5 years ago and I don't having that could possibly cause me to feel as if I did have pneumonia and the flu at the same time. But, that is how these illnesses go. What may happen to you one time, may never happen again. Or something that has never reared it head, suddenly shows up out of the clear blue ocean, leaving you to wonder why the hell it came from.

I've learned as difficult as it is each day of my life, to try and not stress over the "little" things... and try to make best of the good things... also... when these AI illnesses decide to act up, flare, be in commission, or however you want to say they are "active"... to allow my body to "tell me" what it needs. Whether that is rest, or not, whether it is a certain thing to eat, or whatever needs my body, mind and spirit needs at that time, to try and slow down, and allow it to work itself out. Sometimes it may mean just a day of rest and movies. Another time it might mean a full blown flare and a trip to my doctor for a shot and prednisone. Others may put me on the sofa for days, until it is going away. It is never easy to "slow down". Each of us know that life seems to be moving more quickly than we can keep up with when we have a chronic illness, or deal with chronic pain.

The very last moment I had lately of "Hey, stupid, you DO have an autoimmune (bunch) of illnesses, that are REAL, and nothing it "in your mind" and if it is then it needs to be there so I will "listen" to my own body. I was just going through my home room to room, looking at what we need to "finish" the whole house inside and out needed to be completed. We ran out of time and money when remodeling at purchase time, thus we still have thing that really need to be completed. So, I was throwing thing out, knowing some things are just not anything we will use anymore. My "Motto" is if we have not talked about, looked at, worn, used... something in the past 9 months, then out it goes ... and as I gazed around at ALL we need to achieve it truly once again knocked me almost to my knees... I am ILL with diseases that have taken away my ability to "run like the wind" as I did a few years ago.

When did you first have a "reality check" about your autoimmune illnesses or chronic illness/pain issues? Was it as the very first part of a diagnosis, or did it really hit you hard later on, months or even really years later, that they or it is for REAL!!! You weren't living in some kind of night mare...????

Rhia
 

                                                               
                         

... More on the "State" of Medical Care in Our "State" (s)...

... cont from post on FB...  

...is honestly someone I would be frightened frankly to see or to take anyone to that did not know much about medication and the medical field themselves. The woman is pure dangerous. She is just a bomb waiting to go off. I realize that trying to find reputable physicians that want to take Medicaid in ANY state is not easy. When I was in Seattle, I had went into to try and find an orthopedic doctor to help me with the same shoulder that NOW is completely replaced. They at that time were a bit different about Medicaid in WA state. I had no trouble at all, getting on it... but once on... no problems getting meds... and so happened the PCP that Jim had been seeing took the State Medicaid there so, that part was great. But, when it came to finding ANY type of specialist, that was insane. Just like here, either there is none OR if they have one they "no longer" take Medicaid, or not the "program" one you picked (it works much like a Medicare Advantage Plan does I come to find out) where like myself I can choose to have plain Medicare and find a "supplement" to help with co-pays etc... and the 20% I will owe. OR you can pick a "Medicare Advantage Plan as I did" and any of the doctors that take it, I pay 40.00 for a specialist, they see me, and anything they do "in their office" Humana pays for and my part is the $40.00 or $15.900 for your PCP. But, just as now this M'caid "Advantage plan" the idiots put Jim on, most doctors are either in the Dallas area OR up way past Dallas towards Plano, past Garland Or almost all the way to the OK/TX border! What happened rather than like the woman that helped me in Seattle find the "program" that fit my location better, the caseworker brought the paperwork into Jim, did not even tell him about the differences, asked him to pick a plan and sign. She never told him a thing about the differences, thus because he was at that time still ill enough he was unable to really "know AND READ" what all it said... he gets put on this one "Advantage" plan as I like to call it, that does not really cover much of our area or any around us! She rushed him, would not let him keep the paperwork till I could get there and help figure it out... thus he got the shaft so to put it, when it comes to these "specialists" he needs to see for future care such as a Neurologist, a Cardiologist, a GI doctor, an Eye Specialist... for some reason the eye doctor there that examined his eyes and did a new script, said it seemed something indicated to him, that Jim should be checked for Glaucoma... now he has been before... but this could be the results of the accident... because as we are coming very quickly to find out this "Spinal Cord Injury" can have an effect on just about EVERY PART OF THE BODY! One way or the other it effects just about everything. Heart, Lungs, Brain, Liver, GI Tract, Legs Arms, the entire "autonomic" and parasympathetic nervous system... which is also then divided into several other "branches". But I am speaking more of the fact that some of our nervous system makes things such as our lungs, heart, liver and so on work... then the autonomic is of us making our legs, arms, head and so on ... So there are MANY thing medically he might face, (not unlike us with our own Chronic Illnesses and Pain do) in the future. So, (Much like us( we have to try our best to be "prepared" by having a certain number of specialists already that we are established with, just in case one of these issues come up. Eyes is a huge one for us. I am on Plaquenil, which can cause macular degeneration and basically if not c found in time can cause blindness. Thus I have to see my Eye specialist every year for a couple of special tests to make sure I do not have any of that coming on... so trying to find all of these "specialists" that WILL take this type of "Medical Insurance" along with see him as a new patient, is as mind boggling as Anthony said as my own Blog, is "Bloggling" minded.. or something in that respect... again I am posting this on my blog, and will leave a link so you can come and finish reading there and please feel free to comment Rhia

Osteoporosis - It Seems to be a misunderstood Disease (Not Just An Elderly Person's Disease)

A typical scene. You are pushing your cart through the market. You round the corner, and there stands  a sweet little elderly lady, humped over, frail, and appears to be so fragile she might break. Your first thought, wow, osteoporosis.

You go a few more isles over, and round the corner, to see a woman, maybe in her late 40's, possibly very early 50's at the most, standing straight, possibly "small-boned", never giving a thought to wow that woman must have "osteoporosis".

Well,  if you guess yes to both, then you are a winner. If you guessed the first one, you were only 50 percent right.

You make walk 4 more isles, pass another elderly lady, a tad bit frail, but holding her own at around 80, and you may wonder, wow, she could also have "brittle bone disease", but no, not at all, her bones  may be quite well for her age.

Osteoporosis, used to be a disease, that I also would have considered an "elderly" illness. One of those that yes, after many years of age on the bones, we become less active, lose muscle mass, then bone mass, and as we get older our bones are more prone to "break".

Well, if you look at my picture, would you think I have not only "osteoporosis" but, in fact mine is considered as "severe" as it gets. My bones are about the age of an 80 year old or more.

The look on my face is one of longing. Longing to be able to pick that guitar up again and carry on with the "lessons" I had been taking, the music I had been playing, on it, as well as my drums and keyboard before this horrid chronic illnesses, such as Lupus, RA. Sjogren's, Raynaud's, Osteoporosis, and others took away my abilities by making my body either too weak in places, too stiff, too swollen, or just from the fatigue of them all, causing me to not be able to do so many of the things I loved to do.

I have a great deal more to talk about as far as osteoporosis, how it affects women, especially when you begin to lose bone mass during the beginnings of menopause, how you can help your own "bones" by some preventative measures, eating properly, not smoking, daily exercise, and an active lifestyle are ways to possibly "defer" from the "bone breaking" disease.

Yet, other things cannot be helped, such as having to take medications such as corticosteroids that reduce bone mass, chronic illnesses such as Lupus, Rheumatoid Arthritis, and many of the other Autoimmune Arthritic Diseases that contribute to this illness.

For more information you can do your own research at :

National Osteoporosis Foundation - http://www.nof.org

National Resource Center for Osteoporosis and Related Bone Diseases - www.niams.nih.gov.bone

International Osteoporosis Foundation - http://www.iofbonehealth.org

And of course always check with your physicians for more information on osteoporosis and any other of the bone related, or autoimmune arthritis diseases.

More Exciting News & My Blog Posting Helping Elsewhere....

Excited to Blog Elsewhere for An Extremely Important Cause 

Even though I am working to get my "first post" up, since I have been accepted to be a "Blog leader" for IFAA's blog, "Systemically Connected", I wanted to tell all of you! I've been so thrilled about this, that I can't stand to wait any longer!!!! :):) After getting to "graduate" this week from IFAA's "class" to become an "Active Volunteer" for them, I just have to include that I will be posting on their blog from time to time also. When all is in place, I will also have my blog link up in their website, and I'll be listed in the "Systemically Connected" Blog Writers! :):) I am just so overwhelmed, and in a good way about all of it. As just about all of you know, my "advocacy" and helping others fight these autoimmune arthritic illnesses, as well as all of the AI illnesses is NUMBER 1 for me!! Thus my writing, getting a couple of books published, and now as I hope "possibly" to have book number 3!!! able to be published by the end of 2014!!!  (I am not promising anything, because you never know what is in store) but my plan is to try and have it written, and ready for publication late 2014 or early 2015.  That one is so very important because it will be my own journey through the lifestyle of those with chronic illness and chronic pain... and a bit more about my life's path... Anyway, I realize with "health" there are no guarantees... and I fear the Rituxan maybe wearing off sooner than expected. I am having the same pain I had before I had the infusions over the past week, so I pray it is just the weather being so nuts, and not the medication "stopping" to work before the 4 to 6 months it should last. ...more to come... I want to get my blog post on this up and then get busy on a couple more things for today!!!! 


By the way, both IFAA and Systemically Connected have link right on the front page on my blog here. You will see them down on the right hand side below my posts.....


Rhia

Have A "Game" Plan?!! IFAA Does! Rocking Autoimmune Illinesses Right Out of the Stadium!!!!

IFAA ready to kick Autoimmune Arthritic Illnesses right out of the door!

International Foundation For Autoimmune Arthritis - Standing On Your Side of the Field!

This is one of the most incredible non-profits I've ever seen! Although "small" right now, they can just about outdo any of your larger non-profits in the way they gets things going! Another HUGE plus, EVERYONE in the entire non-profit HAS ONE OF THESE AUTOIMMUNE ARTHRITIC ILLNESS OR MORE! So as you ask yourself about things such as earlier detection, earlier doctors, labs, tests, medications and even almost more than that, EARLY EDUCATION AND COMMUNICATION can and will lead to an earlier remission, or even possible a chance of not even having anyone to deal with these illnesses again!!! From their "showing" at the White House, making a huge impact on Congress, to being able to have the ability to find other ways they can change the face of AAI's forever, this group refuses to take "no" for an answer! Please visit the link above and see just how the IFAA has already changed and will continue to change many lives!

"Hectic Home" for the AAI Holidays???!!!

"Hectic Holidays For All of Us in a Foggy Brain Haze!"

ONE HECK OF A TYPICAL MONDAY MORNING! 50 plus things to do and I don't know where to begin first! With this being a holiday weekend, which for us as far as the "day" itself, is not all that much trouble. We are taking Mom and going over to Waxahachie to eat at the buffet there at Ryans'... and more than likely we are headed to Winstar for XMAS!!!! I have a new coupons for 2 nights if we wanted to stay in their NEWEST 500 room HOTEL!! I hear it is fabulous! ;) Of course that is a while away. That will depend on weather how all of us feel etc. If we do we can't go but 1 night. I would not leave my dogs but for one night alone. They already have separation anxiety if just one of us leaves for an hour. So one night with us gone is about all they can handle. Even at that it is gotten to where we have to keep them only in our kitchen. We started having issues about a year ago with them peeing where they are not supposed to. Both of both have been house broken for years and years. But, something went on with them a while ago, that every once in a while for no reason one of them will pee in the floor, like behind our sofa etc. I have tried everything, but they get better. Like now this past few weeks has been so much better. But sometimes they will start it and do that for weeks, and then they seem to stop again. So we just don't just in leaving them if we are both gone for an entire day or so with the run of the house anymore. We did for a very long time, until this issue came along. IN fact they have gotten a bit older and I hate going off even over night without one os us here. But, they are always very safe and my kitchen area is huge! So, they are not just crammed in a tiny spot. They have lots of room in my kitchen. Anyway, enough of my moaning and groaning... then either I am having a flare start, or I am just too stressed. I am just on overwhelm.. and I know all of us are. The holidays are an incredibly stressful time for everyone! Then when you are chronically ill, with Autoimmune Arthritic  illnesses such as RA, Lupus, Sjogren's, plus the other hundreds of these diseases & that includes those with chronic pain on top of the entire ordeal,  it puts our "stress" into a whole new category!!!  Then add on how your entire "schedule" gets all turned upside down. For instance, I have a "set" time everyday that I take my medications and eat something for "breakfast". Well that is after the 1ST ONE with all of the pills, as my husband says. Then I also have a set time or day of the week that I clean, mop, sweep, even water my plants, and so forth. Well, this past couple of weeks from all of the "added and unexpected stuff" as in weather change so dramatically, Mom and a medication issue, my computer crapping out on me, Jim and his shoulder still not well, I am not feeling ll that well myself, and the list of "extra and unexpected" just just hindering the "regular" one. Then I had gotten blown out of the water with the holidays so quickly upon us! I haven't written my annual "Christmas Letter", there is fudge to make;  fruitcake that needs to be made early so it takes up all of the flavors. That doesn't include the other one of many things I am just now thinking of, which is we usually make "goodies" that we either put in a basket or a decorative tin. WE take those on Christmas Eve to our close neighbors (about 6 homes) and have made that one of our traditions for Christmas! Then I JUST remembered (another THING forgotten due to my COMPUTER crapping out) is our ANNUAL Sleigh Bell by Wallace we order every year. Since the first Christmas we were together we started buying these sliver and gold sleigh bells made by Wallace Silversmith's. In fact last yesterday we "celebrated" 10 YEARS of them! In fact they added a little note inside the one last year about they saw the we had ordered from them every year.  Actually a store in Kent WA that we found the first Xmas called Silver Superstore. That year it was so late and almost Christmas by the time we found them, that we got the very last one they had for that year. So, now they email me about 2 months ahead of time as a reminder. Well, until a moment ago, I had forgotten that I had not ordered it yet. Som I just told Jim while we were standing on the front porch I needed to come in and order it before they rub out. Low and Behold in my inbox, there was a reminder for me so I would not forget to order it!!! Now call that "ESP" or not... anyway I sure as hack just ordered it! :) If we do NOTHING else we made a promise that we would ALWAYS get our Sleigh Bell no matter what. :)

So, as I make out my TO DO LISTS, and the LISTS to "remind" me about my lists... and that list to make sure I don't forget about all of the other lists... I realize that in "reality" I am going to have to take one breath at a time, do ONE thing at a time, and also "step" into these moments to know there is no way I can do it all. Either I need to "cut" some things down smaller, or less, possibly try to NOT do some things, and then NOT feel "guilty" because I could not do it all.

As much as I sure as heck (like EACH of you) want to think I am "super human" especially with all of my "bionic" parts, one would think I was Super Human... I am admit I'm not... no longer can I do it all, be it all, make EVERYONE happy all the time, and be able to go on and not stop to find out I am just worn to nothing and come into a huge flare. Which I fear I am having now. Between sudden cracks in the corners of my mouth, my throat soar, and feeling just out of it... I feel as if I am definitely 'flaring" .
So I remind YOU! PLEASE TAKE CARE OF YOU FIRST!!!! I know, I know, we hear it constantly... but if we don't we honestly not of help to anyone if we make ourselves ill. So, some times as difficult as it is to say NO... that two letter word needs to be a GRAND word in our vocabulary.


I close for now in saying, that we are super at all the things we DO get done! We are NOT a disappointment if we aren't able to do it all.

Speaking of Prednisone - Autoimmune Arthritis… A "Necessary Evil"

Here is the site - "Creaky Joints"  and a Topic we all talk about quite often -- Corticosterioids!

Just about anyone  with any of these Autoimmune Arthritic Illnesses - Lupus, Rheumatoid Arthritis, Sjogrens, MCTD, UCTD just to name a few… has had the "pleasure" AND the "Pain" of these types of "steroids"… they are incredible & horrid also… read on….

http://www.creakyjoints.org/content/cj-hot-topic-prednisone

International Foundation for Autoimmune Arthritis Illnesses doing to Make AAI - diagnosed, treated, & hopefully cured!

I guess you can say I am a bit "prejudged" over this incredible lady! Tiffany Westrich  - and here is who she is with…

FAA CEO, Tiffany Westrich talking with Dr. Stephen Katz, Director of NIAMS at the National Institutes of Health (NIH). He was very thrilled there is now an organization representing the Autoimmune Arthritis Diseases!

PLasee take time to see what all this incredible Organization has done and is doing to treat, diagnose more quickly, give an understanding to all about the autoimmune arthritic diseases, find more researchers so we can hopefully put them into permanent remission!

URL:

      http://www.ifautoimmunearthritis.org

I MUST Tell OFF On Myself! Talk About Some SERIOUS BRAIN FOG!! (Comical for sure)

RA, Lupus and Brain Fog!

Even though I am not thrilled at telling off on myself, I have to tell this one. The MAIN reason is because every single one of you, if you have any of the Autoimmune Illnesses have had DAYS, or maybe more that SERIOUSLY you wonder if you are losing your mind.
Well, yesterday was one for me. I began with my mind seeming quite foggy early yesterday morning. Just reading a few news articles, and feeling like I was not quite "getting the message", to my typing being just OFF in all respects. I was having issues like not remembering how to spell a simple word, and as I said.. I must tell this one, ladies will appreciate this…

Of course I was headed to the doctor at 11:00 yesterday morning.  Well, I went to lay out what I was to wear, brushed my teeth, and decided this time to "dress first" then do my makeup (like many of you probably I for the most part put my makeup on first in my robe, then put my clothes on). I was dressing and I thought something did not "feel" quite right, but I could not really tell what was wrong exactly, other than the "tights" or whatever you want to call them, have a seam that needs to be inside the leg portion comes all the way up like that, then goes down the other leg in the same place. With these tights, it's like putting on hose, you have to put them on correctly or they just feel off.

Anyway, I went onto the doctors office. I was a bit early, so I went in and decided to use the restroom before I went in. So, there was a man standing in the lobby, and I thought when I had first walked in and looked at the women's door, I saw is closing. So, I thought someone was in there. Well, I waited and waited; not wanting to be rude, I did not want to turn the knob, or knock on the door until I waited a bit longer. Well, he seen I must have been waiting, so he pointed to the door, and told me that no one was in there. I was sort of baffled, because I would swear when I came in that door was closing as if someone had went in. Anyway, I still decided to wait until minute, and along comes another woman, appearing that she was probably pregnant, and she was needing to use the restroom also. She asked me and I said I believe someone is in there, but I did finally walk over, turn the handle, and low and behold….a huge "DUH" for me, hell it was empty!!!! Talk about embarrassed! The man had already stood there and told me it was empty, yet brain fog ON, I did not even check!

I was then of course felling like an idiot, and wished I would have checked as I usually do, when I first walk into the front door. But, I would have sworn that door was just closing as I came in. Thus I felt someone was in there. So, I go in,  I am trying to get those tights down, just as you would hose, where they "line up" when you pull them up. Well, I look down and there low and behold is the tag on my underwear! I looked again, and talk about feeling like I had lost my mind, my  underwear were on backwards!!!! LMAO!!! Well, I was now in the midst of not knowing whether to laugh like a hyena at myself, or get out of there and cry, because my mind had officially left the "building". Now, I know some are asking how the hell did she put them on backwards and NOT realize it! Of course, normally you would, depending on how they are made. But, this particular pair were all lace for one thing, and they were designed kind of like that when you just looked at them at a glance it appears the back and the from are "cut" the same. But, yet I had thought something was "amiss" as I dressed.

Okay, then here I am within a time span of about 2 minutes trying to decided whether to turn them around or just leave them. My only issue with leaving them, because n a normal visit to this doctor, your clothes all remain intact, I was going in to let the PA(physician's assistant" take another look at the lump on my lower from abdomen. So, LOL, I was going to have to pull the FRONT of those down a little bit so she could see what I was talking about. LOL!!! Okay I made the decision first of all I did to have time to mess with it, and I would have to take my tights off, turn my underwear around and them get those tights "line" straight again. It was near my appointment by then, and this other lady was waiting. So I pulled them up, was my hands and decided that I DO have a couple of pair of underwear that have a tag in the front. Besides all I was going to do, was grab both my tights and underwear and hold them down about to my pelvic bone so she could examine this lump. She was never know the difference, thus I went in, and she pushed, mashed, squished, massages, and I don't know what all else this freaking lump on my left side! Standing up, laying down, she had me lay down, yet act like I was going to sit a sit-up (like I could hold that half way for very long), along with the OTHER side since I thought I had FELT one on the OPPOSITE side but in the same area over the past few days.


Nonetheless, I found out as I said in my other post I was at least not TOTALLY NUTS, because I kept saying SOMETHING WAS WRONG! I had even thought HERNIA and looked them up to find out all about the 4 or 5 types there are. Which I knew about a couple, but did not realize there were others, mainly named depending on where they are located. I had research everything I could find as I "Googled", and continued when I described this "lump" to be a hernia. At the time what I DID not see, that a "SONOGRAM" often will NOT HOW a hernia!!! Okay, so that is why last week the sonogram showed "nothing". Furthermore, I know that is probably what my Gynecologist "felt" last week. She just did not realize it was NOT an ovary, it was the hernia instead. So, that cleared that up. I was told I had an over left, but on the RIGHT side, the left one they took out. So, at least I did have some relief in the fact, I DID KNOW something was WRONG! And I continued to search for some doctor that could figure it out! Now I COMMEND my PA for finding it. She told me, had she not seen several like this before, she may not have figured it out. Undoubtably, for some reason, due to the place are located even doctors that have practiced for years may not find it right off the bat. So, I again was happy to know it WAS SOMETHING, but I of course am NOT THRILLED with the fact I am facing probable surgery, and from what she said, both sides, because there is also ONE beginning on my RIGHT side as well. I had felt it and yes that is what it is.

So, after the "good/bad" news, I head to the pharmacy to pick up a couple of things, then go home. After I ate, took my medications, changed clothes and settled in, I decided that I needed to find out WHERE in my BLOG were the "Meta tags". If you are not familiar with the term, they are certain "words", in a web site that are put in the coding, in a specific place that helps people to find our websites in searches and so forth. Also the more searches, and having those correct "keywords" gets your site further up the "food chair" in a "search" such as on Google. So, that means MORE people potentially coming to your site, blog, etc.

I have done web design, so I was familiar with these tags. I also have done what is called "SEO" in the design world (Search Engine Optimization), the term, which as I said above helps also even more to "push" your site further up so more find you. Now, don't get me wrong, being I am in
"blogger" and I am using one of their "templates" … "mucking" around in their "HTML" code (the actual code or one of the types of codes used to make a website), is not a really fun party. It depends on how "easy" or how difficult the owner of the site has made it. Most usually have a specific pre-designed spot in your backend of the blog, so you just plop those words in such as for my blog could be (autoimmune arthritis, rheumatoid arthritis, lupus, sjogrens, AAI, MCTD, UDCD) etc.  The goal is to "match" the words most people searching for something like your site will "find" because those keywords helps them to get to your site. Okay, so I go in and find out I have to put this type of coding into the "core" HTML code myself. As far as I can tell, Blogger, for now, (and you would think of ALL blogs they would because they are part of Google), does not have an already pre-designed place for this type of coding. So, I go into where I can do this, I had the code, and put it in where I was supposed to, and it tells me I have some type of an "error". Well, I was baffled, because I had done things correctly as far as I could see. So, I try and look at the couple of "errors", and find nothing. Well, I go to look at a "preview" of my blog, and damned, the very last post I made had messed up "coloring". It did not look at ALL, like I had done it! So, I panicked. I began going through what I had done. Then even "reverted" it as far back as I could to their original code. Still my very last post looked wrong. I was tired, I had been through hell all day, so I decided to stop, it was not make or break last night, and try with "fresh eyes" this morning. Even my husband who is the EXPERT in Web Design and has been doing it for 15 or more years could not figure out anything wrong. Nothing appeared out of place and so forth.

Okay, go forward to the morning. I get up, turn on the coffee pot, go out onto the porch to see what the weather was doing, get coffee, and look at the current FB posts to see what IFAA and Tiffany, plus the others had said last night. I decide okay I have to "tackle" this damned code issue. I will be in a short while using templates to move a site over to a new place. So even though you don't "have" to code the "HTML" coding, it really is a HUGE help due to you being able to find a mistaken or make a change, tweak the coding, etc. I come here to blogger, I pull up my "other older" first blog I began, and changed it to the exact template my current blog looks like. Then I go into that CODE to compare the two. I knew I could find anything that was missing, or different like that. A time saver for sure. I could find the issue just looking at the code on this one, but it make take more time, thus I preferred to do it with a short cut. I am comparing the two, and I am seeing everything just as it should be! Not one little comma, or other piece of code was out of place or missing. I was just baffled!!! All of a sudden my brain come into a "LIGHT" and I decided to put a "test" post in to my blog here and see what it looked like. Well HELL, the "test" post looked totally normal!!! Nothing wrong.

I got to thinking that my very last post yesterday, I copied a portion of it off of Facebook and pasted here. Well, that post had some coding of it's own where the font and so forth was of course more for Facebook! Well, after all of the sheer terror of thinking I was going to have to redo something etc. , it dawned on me about that "code" in that copied and pasted post, overrode the regular code on my blog. Thus it was the ONLY ONE, that had that look! I had nothing wrong at all… NOW is  where I wonder if I should kick my on butt, or pat myself on the back, for a job well done!!! LOL!!!!

So, you can see where my entire Tuesday, from early morning until late night was a total BRAIN FOG!!! I seem to have more and more of these days… and it is frightening.. I can only hope keeping myself on the computer, writing, staying active as far as my brain and thought process, I will not watch that foggy stuff get worse. I never think it will get much better for several reasons, illness, age to name two. Stress, too much to do, not enough time to do it, we get hurried, thus our brains cannot keep up with all we are trying to process all at once….

So, HOPEFULLY the "fog" has lifted, and the actually very cloudy and rainy thunder storming day outside, will NOT bring the "clouds" to my brain for at least one day!!! HAHAHAHA!!!!

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