Life this week... kind of like "Hell" Week - from Sjogren's, to RA, to not getting to see my Rheumy... to every other appt on the planet...

Talk about nuts! That does not even describe what this week is and it is just Wednesday.... my Rheumatologist appt got postponed until Sept.... he had a schedule mix up and could not be in the office yesterday. I had been sick to my stomach all day and finally had gotten in the shower (my appt was not until 3pm) taken a shower and gotten myself a bit better as far as my stomach, and as I was drying my hair, I could hear Jim on the phone with whom sounded like my Rheumy's office, I could tell, it was going to be cancelled, and I knew then it would be weeks or months before he is in again. Now that he does research, teaches and just sees a few patients, getting to see him takes a feat of God almost to get in to see him. But his office manager told Jim to have me send them an email & he will see if there is something he can do as far as medication etc before the first part of September until he can see me. So, then I DO HAVE A PIN HOLE pulled in between a molar and my Sinus passage. That is why water pours out of my nose when I try to gargle or anytime I have some water in my mouth and I bend my head over. Plus "air" swishes out of it, making a really odd noise and talk about drive you nuts. He is trying to allow it to "seal up" on its own if possible. He said that one "socket" is healing a bit slower than the rest, but he hates to "mess" with it. He would rather see if it does seal over by the time my dentures comes in  - about 7 to 10 days it looks like... then if it still has not sealed over, he said he would do a minor procedure to seal it in. Of course it always has to be ME with some WEIRD and strange issue... never fails.... he did another type of "warm wax" impression on Monday. He is doing some special work on my front upper teeth to try and minimize my overbite as much as possible. So, he took that in order to do more fine tuning into the dentures before they are made. I am supposed to get to see them next Tuesday I think on the computer. He was still adjusting on them this week, so he say now it should not be much longer now. Wow, when he just put that wax in there my mouth felt so "full".... I hope the hell I can stand those dentures in there. It seems like my mouth is so much smaller than what they will be like in there. I pray it all comes out okay. This has been a great deal of time, patience, money, and more money.... to just get my teeth in, so this has be RIGHT!! And Work! I am hoping that even though I cannot have a biologic right now, I maybe able to be put on "Xeljanz" in with my MTX, or at least up the MTX a bit until I can get something further done for the RA/Lupus pain, swelling, stiffness... I am having mortal hell with it, and there is no way with me going through all of the mouth stuff that my Rheumy would allow any biologic at this time. Anyway, I am sending him a message today asking him if we could try the upping of the MTX or the Xeljanz or anything right now until I get through with the teeth and any chance of infection. Then we can go back to some type of biologic. Things are nuts here... so if I am not around much, it is just because we have an appt every day this week. Plus I feel like someone ran over me twice and back over me 3 times with a train, plane and automobile today. We are expecting storms anytime and bad ones possibly. By the way my body feel, it should be a damned monsoon.... hope all is well with you and yours.... Hugs. Rhia

Arthritis Foundation Capitol Hill Summit - Have to "brag" a Bit"

This is .pdf page From one of our Arthritis Foundation! Since it had Chris, Rep Barton and I in it, I just had to share! :)

Bio-Medical Research, Congress, and Lupus Research Institute

 

Urge Your Senator to Co-sponsor Bill Supporting Biomedical Research at the National Institutes of Health

To continue our national commitment to research and fighting lupus and other diseases, we ask U.S. Senators to co-sponsor and support ''Accelerating Biomedical Research Act"introduced by Senator Tom Harkin (D-IA) July 24, 2014.  The Bill aims to prioritize funding for the National Institutes of Health to discover treatments and cures, maintain global leadership in medical innovation, and to provide consistent, reliable source for biomedical research. Lately, the NIH budget has been flat lined because of the budget battles in Washington. We need more federal funding for biomedical research on all diseases, especially lupus. The much-needed advances in lupus treatment of tomorrow depend on investment in NIH-funded research today.

Click the button below to write your legislator or click here to call your legislator.

 

http://www.congressweb.com/LRI/12

 

We Advocate on the Hill. Each year the LRI mobilizes representatives from the National Coalition to visit legislators on behalf of the lupus community throughout the country.  Learn how you can be a Virtual Advocate without ever leaving home!

3rd Time A Charm!! -

 It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.

 

I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs. 

I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia



I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!


Rhia

I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something...  If this is still not making sense, send me an email at rhia@ravishingrhia.com or redstangblonde@yahoo.com and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!

The Essense Of A Nation In Desperate Need of Quality "Non-Greedy" Medical Staff... where have they gone?

As I title this, I know it shall keep the "title" I have here now. This is a very true tale, about a recent occurrence that I've witnessed in a small town close to my very own. Population, probably a great deal smaller than the 20,000 so give or take from Ennis. By driving down "main street" of this tiny town you would assume just about everything has shut down, due to the larger towns around Ennis, Waxahachie, Lancaster, DeSoto, and even Dallas for that matter, so of the 2 entire blocks that make up down town, I would venture to say 80 percent of the window fronts are empty, and the stores have been shut down for a long while. All of this from giving into the larger communities such as Ennis, with its large Wally-World, or Waxahachie with Lowe's, Home Depot and all types of "large" stores that took over our "Mom and Pop" neighborhood stores many decades ago. When we pulled in for the first time about a week or so ago, my first view into a "farming" community in a long while.

I had been in this community just outside of Ennis many times in my younger years. And as usual not much had changed. The dentist I took my kids to see there were closed.

But, when we walked into this place that was supposed to be a "medical clinic" I was not sure whether to run to the car and leave, to ask if this "was the clinic", to laugh, or to just sit down and cry. The upholstery on the chairs must have never been cleaned or vacuumed. The entire place was "junked" up with bric-a-brac, and even though there were plenty of chairs, today the place was more than packed and standing room early. Most of those there you could tell were either living from day to day, and of course this clinic is specifically for those that are without insurance & are not able to afford a lot as far as a medical visit. They also do a great deal of "referrals" to other doctors. So, like Jim, he needs to have several "specialists" that as time goes by, he may need medications refilled, or something to be checked out.... after this huge of an accident, the idea of just anything could go wrong and he needs to have a list of "specialists" that would take the "Superior" Medicare Policy... some type of "state" assistance meant for someone more like himself... an accident,no insurance, also even though we have a lawyer it could be a very long time before we see the finances to be able to "pay" for the medical bills. We have hope their will be something to cover later in life, but at the time we have no clue at all as to what if anything will be given, not given, etc... out favor, not in our favor... we just don't have clue... and until the day the lawyer, or someone hands us a legitimate "check" I don't even want to try and dwell on what that might be.
For now, we can squeeze through month by month, and get everything paid for... and that is what counts for now,

Back to the Subject... this woman in behind the "receptionists glass and wall, was just going on and on about this "person" who had passed away.... talking on and on about the relatives, the funeral.... for at least 25 minutes... at the very minimum... and there was not another patient to be seen. Finally, this "voice" calls Jim back. OMG, I almost fainted. Here is this very feeble, very elderly woman, and she was then and again yesterday - and had no clue what she saw him for the week before, what medications she was "supposed" to have given him... claimed she "NEVER" calls medications in, yet as she began to write our scripts, she is on the phone with our PHARMACY giving them the scripts. All in All when we got through.... we were THROUGH! This woman... and I am sure year ago may have been a great doctor, BUT SHE NEEDS TO BE TAKEN OUT OF THE MEDICAL WORLD!! The lady either has dementia, or the beginnings of Alzheimer's.... and another thing.. she never listened to anything we said to her, and she could NOT sit still. She was up and down, out in the hallway, talking to one person, then another, then would come back in and ask us what medication did we talk about... and at the very last, which took the "cake" as the saying goes... as she began to "name off" specialists Jim needed to see... a GI doctor, yes, A Neurologist, yes, a Cardiologist, yes BUT really only to keep an eye on his blood pressure due to the Spinal Cord Injury and a PCP is able to do that, and then all of a sudden, after WE said a Pain Doctor, she leans over and says to Jim "Also you need to see a "pee-pee doctor" ROFLMFAO!!!! What the hell??? Where are we in a Pre-K class room or what??? What about a urologist, and HE DOES NOT EVEN NEED ONE! There is no issues to even need a "pee-pee" doctor, HAHAHAHAHA!!!! By that time I did not know whether to slap her, or just feel sorry for her... or BOTH! Who I DID FEEL SORRY FOR were the 20 patients sitting h=in the waiting room to see her... Unless they needed a -pee-pee doctor they were sh*& out of luck....

Cute Story about Neighborly Neighbors & Their Friendly "Battles" Over the Years

I debated about posting this here first, or putting it on my blog with a link to it here. But, for now I will post it here because it is a "cute" little ordeal that has actually been going on for around 50 plus years. My Dad & Mom lived in the very first house my Dad had built in 1950. It is tiny. 2 small bedrooms, a small living room, a very small dining area that also is where the washer and dry are, a fairly small kitchen & alas the bathroom is just like a tiny box! We are talking about just less than 1,000 sq. feet! Back then that was in some ways considered HUGE! Many just could not afford a "huge" three bedroom brick mansion, with two baths and an attached garage. I begin telling this because you kind of have to get a bit of "background" about the neighborhood, & get the jest of why this is so freaking funny, especially to me. Mom & Dad had (and Mom still has the woman) a couple next door to them that they had known from day one of being there. Over the years they had cook out's together, went dancing together, Dad worked with the husband for many years at EBF etc. The wife, had been a nurse (at one time the only one that delivered babies with the doctors), and she was extremely dedicated and even after she retired, she went back to work for one of our doctors, until he retired, and she had too many issues health wise, so she had to give it up. Anyway, both my parents and them played "penny" poker sometimes on a Friday or Saturday night, went out to eat, and Dad and the husband were always kidding one another, from Dad Calling him a "tight wad", to him calling Dad silly stuff also. They would every once in a while get pissed and they may not talk to one another for a day or so, and then right back to the friendship as it always was. They had 2 boys. They were both several years older than me. And the neighbors house, like ours was very small, about the same size as Mom's & Dad's... and they raised those two boys in the tiny home. She still lives there till this day, just like my Mom... both chose to stay in the home they had always been in since marriage.
She, as a nurse, really did many, many things to help me. She was like a 2nd Mom, and sometimes it felt like my "1st Mom)! LOL... she taught me to crochet, make baby caps, and took me shopping in Dallas when she went... She was always teaching me something or doing something and would usually invite me to come. She is the very reason I so wanted to become a nurse. I "worked" as a volunteer Candy striper, she allowed me to do everything from learning to use the "autoclave" (back then it was used to kill the bacteria etc on the instruments.. there was nothing, or not much disposables back then. They washed, cleaned and then wrapped the packs of what was needed in certain surgeries etc... then put them in the autoclave to sterilize them. I even had my picture in the local paper one year holding the first "Christmas" baby in a red stocking we always made for them to go home in.

So, as you can tell our families were close, almost like being family members to one another. But, if Dad decided to go out and get a "portable gas grill", that family has to "one up" Dad, and have one put in the ground permanently and build a deck around it. If Dad painted the house, so did they. If Dad bought a new truck, you can bet they would have a new vehicle.... LOL, it got to be just funny, because they just could not stand for Dad and Mom to do something, without them feeling the need to also do the same or something similar. She had helped us out over the years when we were ill, or had a health issue, we always went over to talk to her first. But, just after Dad passed away, and just after I got back to Ennis to help Mom out, little did I know that her friend was "helping" Mom with her affairs financially, etc... but SHE bless her soul is just PUSHY as hell. She always wanted to tell everyone what to do, what to say, where to be, and if you did not do what she said, you can bet she would get pissy, and not speak for a day or so... But, as I said just after I got here back in Ennis, Mom & her had "words" over something I think... what I do know is that the woman, who had been like another Mom to me, quit speaking to me also. Even if she met me in the store, I could have ran over her, and several times I looked in her the face and said hello, but she NEVER said a word to me. Now I know my Mom sometimes can say something, & she may not mean it to sound "degrading" or in a bad way, BUT people take it that way. So, I feel my Mom might have said something or the friend did, & whatever it was it really hurt their friendship and mine, and I HAD NOTHING TO DO WITH IT! After I got here, Mom no longer needed her "friends advice" so I think that was part of it. She wanted to be able to tell Mom how to kind of "run her life"....now I am here and I am the one helping Mom out with the affairs... Well, about 2 months ago, after YEARS now of not speaking they began to speak a little... thus it is not all patched up but there is a bit of communication between them... NOW comes the FUNNY PART!!!! LOL... Last week I was at Mom's for the most part as they replaced her roof. Well, the gentleman that owned the roofing company came into tell us they were through... and then he said, your neighbor wants me to give her an estimate... MMMM, you must have known one another for a long time!!! We kind of looked at one another weird and asked him why he thought that. Well, Miss Goody-two-Shoes had commenced to telling him Mom should have had that replaced years ago, and blah, blah, blah, about how Mom should do this, & that I may not be giving her the best advice ---HAHAHA ----- We had to laugh in the first place, the ONLY reason for her having her house roofed is because she just cannot stand to be "one-upped" by Mom... and then that is just like her to mouth off about someone, and of course it had to be Mom and I! So, we told him a "condensed" story of the thing, and we all three had a great laugh over it, PLUS HE GOT THE JOB!!!!! So, whether she did need it or not.... I was happy he got the roofing job... And to read me tell the story, it is not quite as funny as "watching" it evolve after all these years... just goes to prove the old saying.. "Some things never change"... she is the same as she was when I was 10 yrs old... and I bet Dad and her Husband are in heaven still teasing one another... and her Mom & Her are, still the same... a few years older but still "friendly rivals"about how Mom should do this, & that I may not be giving her the best advice  ----LOL

Spinal Cord injury, Lupus, Sjogren's, RA - ?? Happy 4th (Belated) Hope All is Safe - And What in the World is Happening to our World?

I started off with the title of this such as it is, because This post will be a conglomeration of ideas, of things going on... of how tough like can be... how things can change within the blink of an eye... and no matter where you turn er either have some "natural" disaster, man made disaster, or for the most part , if it is not one thing happening, it is another.
As far as Jim and how he is with the spinal cord injury... which I am just now honestly beginning to truly understand how long something like this can take to even show symptoms.... it can be months and months before the "cord" itself comes out of " spinal cord shock", plus healing all of the bruising, swelling and surgery.
Then I find out about this ( definition ) "Spasticity"(Spasticity is a feature of altered skeletal muscle performance in muscle tone involving hypertonia; it is also referred to as an unusual "tightness", stiffness, or "pull" of muscles. The word spasm comes from the Greek word σπασμός (spasmos), meaning "drawing, pulling." Clinically, spasticity is defined as velocity-dependent resistance to stretch, where a lack of inhibition results in excessive contraction of the muscles, ultimately leading to hyperflexia, an exaggerated deep tendon reflex on stimulation with a reflex hammer (or spontaneous firing of deep tendon reflexes as in clonus.) and how even though he was in the hospital 3 months, went through ICU, Acute Care, and to Rehab; then another Rehab... and out of the "hospitals" and into "outpatient therapy". Let me say that Baylor of Dallas is one "HUGE monstrosity" of a Hospital. And that is not including all of their other specialty's from the Cancer Hospital to the Dental College. We we blessed (if you want to call this horrid wreck blessed) that it happened so close to Baylor Hospital they immediately took him there. ALL of our hospitals have their own specialty's but Baylor is just a "golden" egg for Rehab and accidents with lots of brain injury, or spinal cord and nerves.. they have some of the best there.
I knew I would write about the entire happenings (since there were more than on thing that happened at the same time) that could have made the entire nightmare much worse than it is. Some people may look at Jim, on his cane, with his legs quite "wobbly" at time, his neck sometimes bent over, or his shoulders tend to want to roll forward, and they "wonder" if he had a stroke etc. I usually come right out and tell what (Tiffany) calls the "Elevator" story.. He was headed o I-45 to the DFW Airport. As he came upon the outskirts of Dallas and on I-45 where his has several 'In's and Out's... changing lanes and so forth... for NO APPARENT reason we have yet to see or know, he was HIT from BEHIND (now he was driving 60 MPR which is the speed limit through there) an 18 Wheel Tractor Trailer Rig , full speed rammed him from the back, enough we "think" that then it shoved our car under a "Tahoe" which was in the next lane to Jim's right. Then it seems our car slowed after all of that, but continued to "spin" over into another land and it appears he was slammed again by the tracker trailer --- he was "hit" at least Twice, and at a very fast speed to have done the absolutely horrible damage to what now does not even appear to be a car. Jim, does NOT REMEMBER ANY of this. All he remembers he was head North on "I-45 to go to DFW Airport for a plane to Washington DC, WHERE I WAS at the time this all took place. The ONLY thing he said was 2 "people" tried to get him out of the car & could not, so the firemen came to "cut him" out of the car. Well I think he of course already had "MASSIVE physical damage to his body" as well as a concussion, and the "men" were probably the firemen and the ambulance drivers there. From what I & he knows he was unconscious almost the entire time. I know he did "HEAR" something that terrified him though. We were in the Taco Bell parking lot a couple of weeks ago, and I accidentally cut the corner a little to quickly so it kind of made a scraping sound as a "wreck" might and he almost fainted it scared him so badly. So, I am GLAD honestly he does not "remember" the wreck. I think he would have many more issues mentally and emotionally had he been awake.
I was called from Baylor by a trauma unit doctor, while I was in Washington DC..and what made that so bad, is that his Mom had just walked up & thought I was crying "happy" tears that I was getting to meet her, see DC...and all of that. So, a gentleman who helped me through this entire ordeal took over the phone & got the injury reports, if Jim was able to talk, was he able to recognize, and his injuries were etc. I had to tell Jim's Mom whom I had NEVER met, but talked to over the phone for about 10 years that her son was in ICU due to a very bad auto accident. At that moment I just crumpled to the floor in the lobby the of Hilton DC. I could not think, talk, answer, I had just had news that was so totally unbelievable & that I had no clue how to get home (I was supposed to fly home with Jim on Sunday after we had visited The Capitol, DC, His Mom and had a mini vacation. There was a guy who was just monstrosity with everything that had to do with RA,Osteoarthritis, Juvenile Arthritis, and so forth. He spends ALL of his time when he is not working at Summits, meetings, and putting his efforts into helping especially the kids that like his daughter, was diagnosed with JRA at the age of 9 MONTHS OLD! His name is Chris, and was right there trying to do everything to help me that he could. He went to the head sponsor over the Summits, and Laura who is with the Arthritis Foundation and she had a ticket for me to fly out within an hour or two back to Dallas, so I could go be with Jim. At the time we did not know if he was even stable enough to make it. So, even though I was so about leaving his Mom there alone to deal with it all, I knew I had to get back home and to Baylor quickly. My son, Jason who at the time was in Houst working, got the word and he headed up I-45 to come to the airport and pick me up. He ran into some bad weather, yet he got there about 45 minutes after my plane landed. Chris stayed with me the entire time, checking on me, carried my luggage, getting me through check points with bothering me about my pain pump and so forth, thus we made it on just in time. He was a couple of rows behind me, and I was just blessed beyond words to have had him in our summit "group" and then to help with everything he could do in order that I got home. It was amazing.
As I have written to Laura on several occasions, I will never forget the kindness  the "Arthritis Foundation gave to me in my time of need, and I hope to be able to pay them back and even more in my own advocacy work, monetary when we ever get some of that, & to help in any way I can to make sure I spread the word about how important their foundation is. I have read that already on two occasions OUR SUMMIT in MARCH 26, 2014 already helped to PASS TWO of the three legislative issues that the Arthritis Foundation were there advocating for!!! That is just incredible!
So, here "WE" (I) am in the smack dab middle of my own nightmare with Sjögren's Syndrome and trying to figure out the "mini implants" (not sure why they call them "mini"..... this is certainly no "Mini experience". By the time I am through I MIGHT be able to eat Christmas Dinner 2014, if I am fortunate!