PLEASE Start COMMENTING!!!!

I have lots to catch you up on over the next couple of weeks. I promise I will. I am on a new RA/Lupus medication, that is not a biologic. I will explain what my Rheumatologist told me, and how he has come to the conclusion, that if I can, maybe trying to stay away from a biologic, other than trying Orencia, would help to possibly reduce the number of infections I continue to get. I had been ill from way before Christmas last year, and was ill when I went to D.C. at the end of March! I was having a flare, but I was also I believe even then developing bronchitis that turned into double pneumonia. But, until I was running 104.5 degree temperature and almost out of my mind hallucinating from the high fever (I NEVER have a fever)... thus now I certainly know what to look for if I expect I might be having a new infection coming along.

I am so grateful to ALL of you who come here and read my blog posts. I know you do, and I see who comments and who does not. I will say that up until the last couple of weeks, there was not a good way I could see the comment if there was one, and I certainly had not a good way to see who commented at all, and what they said.

Now Blogger has made some much needed revisions in the Blogger software, and I just have to catch up as to what they have changed, and how I can use what they have done to make my blog even much, much better.

We have a few more things to work out with doctors, finding a "good" pain specialist for Jim and a Neurologist who will take his insurance and take care of problems as they arise. We think we may FINALLY have a couple of good referrals, but we shall see. When it comes to doctors, tests, hospitals, insurance companies, and pharmacies, you never know what the outcome will be.

I am still working on getting my jawbones strong and well enough to withstand the little mini implants that my dentures will snap down on those and be able to let me eat with them in and they not especially the bottom one coming falling out, I am getting there, but it is just taking patience to allow those all to fill in and heal before he can put those implants in and they stay strong enough, and my jawbone strong enough to hold them in. So, I still have at least until November to do X-rays and see where we stand.

I have just completed being a "Consumer Reviewer" that I had been nominated to do and then was asked if I wanted to do it, and of course I said yes. It was a true learning experience but it has provided me with lots of new avenues of advocacy, ambassador, and activist can mean, and how much my opinion and all of our opinions Do MATTER!!!!

On Monday, Jim's birthday.... the 22nd we have an appointment at our lawyers office to go over what will be going on for the depositions. Then on Tuesday we go back in and give our depositions.  Since it is in Ft. Worth, our plans are to stay the night, and possibly go out to eat or something in celebration of Jim's birthday... and who knows... we maybe also celebrating the nightmare of this wreck stuff to finally be coming close to an end... and it coming out in our favor in a very huge way!!!

It is a bit nerve racking, thus I have not talked about it much. I just felt until we are close enough to possibly know when we will know the outcome. So keep us in your thoughts and prayers, as Monday and Tuesday are very significant for us in regard to possibly getting favorable results from the law suit.

I shall put on more tomorrow... as I get some of my other
chores out of my face...


Hugs, Rhia and by the way.. once and again, thank you my dear friend for taking a moment to post here :)                                                                              

Trying to find My Way Back - to What A "Normal" Autoimmune Diseased Life Should Be...

I began this as a post on Facebook early this morning, Sept. 2, 2014. Yet, after writing on it for about a half hour or more, getting up to check on the dog, and my head pounding... it dawned on me, "Get your other stuff caught up... i.e. make some sugar free jello, make the chocolate fudge cake for the weekend, getting the "stuffed peppers" I bought the stuff to make on the day when it was supposed to be cooling down; thus this morning seemed to be the best morning. I had thought about going out to wash my car. I thought if I did maybe rather than continue to "test" and tease us, it would actually rain. Well, so far I was wrong, as it all has done lately. It seems the weather has made many of us hurt terribly. Physicians (some physicians) want to tell us we are full of bull when we say that the "weather" doesn't effect our lives as far as our pain, joints, headaches, and so forth. I know beyond a doubt that from the barometric pressure, to "cool fronts', the humidity, rain, sleet, snow, thunderstorms, you name it, many will more definitely have an effect on chronic pain illnesses, joint issues, and many of the "2nd, 3rd, 4th, 5th and so on, disease that follow right along with the primary diagnosis. I had been concerned lately over "Shingles". I have seen way too many of my online friends, as well as close kin folks and friend that have had a breakout of shingles. I found articles stating people that have never had them, have well over 2 to 1 (50%) chance of having shingles if you have an autoimmune illness. I've been concerned over my illnesses because I feel I can't quite find a place of "remission" in any of them. I am on the medications, I am trying to do everything I can correctly, rest, eat well (ah, that one is hard with the teeth issues I have)           This next paragraph or paragraphs if you would like to say below are what I began on Facebook. I copied what I had already typed on and then decided I am going to "stick" to my word. I am going to post the bulk of the post here, then just put a small snippet in FB, with a link back to it here in my Blog. Blogger has made some changes, some good, giving you more options and other than just add chaos & confusion. I was hoping FM would slow down a bit and give people time to catch up. Sure many of us are "hooked" on line 24/7/365. But, all too often we don't have time to sit around and figure out the "new" things on FB, Blogger, and the numerous other sites we "belong" to. It reminds me of all of the stores I frequent here in my home town. About the time you learn how to use your markets check out debit system,  they bring in one that is "better, bigger, more secure" and also confuses the hell out of me. Then you run over to your pharmacy, same thing, now they handle the entire way you check out totally different. Now try to go shopping two or three department stores! Everyone one of them, either has a new "card" for you to sign up and and get 20% discount. Yes, the first time, and then after that, all you get an email box full of junk from them daily. Then they have all of these mark-downs with an "extra 20% off" at the register, and you either have your calculator out, they might be nice and have a "chart" up on the rack telling you what the cost will be after the "extra" is taken off at the register. Anyway, when you are already dealing in trying to keep your sanity with a brain fog that seems to only be getting worse each week; the lists that have now become the lists of lists you need to take care of and LORD forbid I not forget something for someone, a doctors appointment, or even something as trivial as getting "change for the coke machine, or picking up a drink, some kind of soda that if I don't, no one else would think about how thirsty I get when I am having to drive anywhere, and in fact I cannot walk through a huge store like a Wally World's, unless I stop by a front counter and pick up a drink to sip on while I shop.                                                                                                                 

I've been telling this now for awhile to my family and friends. Not only had my physical  issues change, I seem to have slowed down to a crawl at times. My brain cannot function, I feel it takes me forever to get ready, then I look down and there is always something else that needed to be done, or I forgot to put on "the list" .... heck even times I do well to remember the name of a room, or the name of what is in that room! Store names, my own phone number, it seems that may "brain fog" add          


I thought I would post this on FB at first, then changed my mind. I is a combination of several days posts, I began days ago. I changed my mind and want to put it here first, then really tell about these feelings I have on my blog; then share them that way. I will put this on my blog, but it has been on my mind now since I went to Winstar last weekend with my Mom. As most of you know, due to all of my extensive sharing, I LOST ALL of my Teeth to Sjögren's within a year. It sounds almost impossible, and I know from everything I've read and been told, that they "damage" that could not been seen probably had been going on since I was first diagnosed with Lupus, Sjögren's, Raynauds, RA... and who knows what else. That was back in about 2009-10 when the very first real "blood work" was done, and the doctor took ALL of my years of symptoms seriously to put them together. When he did, I was sent immediately to a Rheumatologist. This gentleman, a Rheumatologist no doubt for many, many years, still even used "gold injections" on occasion on patients. But, he was far from a dummy, and further he end  around the corner there in his office to have blood drawn, urine and he did even a more extensive workup on me. But even that first day, just by an examination of my toes, fingers, wrists, thumbs, feet... he "felt" and the saw the damage. He also saw that I had Raynaud's immediately, and I had an "hyper-extension of many of my joints, almost like being double jointed. Even after that first visit, I was so upset that it had probably been going on for years and years.. my Xrays showed my toes and finger joints being bad already, so none of this happened over night, and not one doctor until my new PCP at the time, could ever put ALL of my symptoms together. It was somewhat almost a relief, yet it also very scary also, No telling what had really come of "damage" not detected since it might have been years this was going on, yet no one could explain the severe migraines, the extreme tiredness, the not being able to "multi-task" as I once could, having just about every joint either already been injected or had surgery or even been totally replaced before the age of 50! No one could truly explain how someone, like myself, a very fit woman, (walked, ate properly, exercised daily, kept my weight down, and yet I had a heart attack at 40 years old and another at 50! Nothing made sense, yet no doctor could put it all together either.. what made my new PCP at the time think "autoimmune issues" I don't know... Maybe a conversation I had with him about me thinking I had "Lupus". Anyway something finally "clicked"... thus here I am today, far into the realms of autoimmune illnesses... and the latest issues the Sjögren's... so here I am now 54 (since Feb 15th) ! battling a battle I thought I would never have... losing my teeth and having dentures... and won't hold until the "mini implants can go in, which will be another 60 days or more. I am not going to lie They are a pain in the butt, or mouth I guess. They seem odd, too much "junk" in your mouth, a pain to have to clean, then put in each morning, then have to brush them, clean my mouth and put them in, then out they come at night... you cannot sleep in them. And eating in them for now is almost impossible. Even my "bite" pattern is completely different, which I am thrilled about, because they are "pretty and I wanted pretty teeth all my life, just never realized they would have to be "fake" and not my real ones. But, I honestly felt like once I got these new teeth in they would "fill in" where I had lost many teeth, which in turn would fill out my lips more, my bottom cheeks and lines around my mouth. I was hoping to "see" a bit different maybe even more youthful (by a few years) me.... but guess what? Nope.... did not make that change nearly as much as that as I had so hoped it would. I just was so disappointed, because I did not realize with the scars from the accident years ago, and the two small scars from my fall right around my mouth. I keep thinking, well, like any other woman, there has to be a way to "tighten" up that skin, or "bleach" out those darkened scars. I even went so far as to  begin looking today and am going to research some of these new facial creams out on the market to see which ones really work, and which ones charge a fortune, yet do nothing. I come more and more to realize I must take even better care of my skin. I have always pretty well used the proper things on my face and skin, lotions, I always take my makeup off at night, allow my skin to breathe and so forth. But, I pray quitting smoking will also reduce some of those lines around mouth. I see elderly women who probably smoked all their lives, and they have all of these deep seeded wrinkles around their mouth, and I always said I never wanted to do look that. But, dammit, when the teeth are out, I somewhat do and it upsets and embarrasses me to have anyone see what it truly looks like. I know we all age, some of us more gracefully than others... and depending on how well we have taken care of our bodies, minds and spirits makes a huge difference in the way you look as you age.

So does having these illnesses like Lupus, RA, Sjogren's age us faster? In all ways, in some ways.... what do you think????? I want to know how you feel about the subject and how many of you really take great care of the hair, skin, nails, including your face? If so, how and do you feel it is making a difference??

             

Arthritis Foundatiion Jingle Bell Run in TX and Many Surrounding Communities In December!!!

The one closest to me is in Ft. Worth! I would love to see one of the girls I made friends with in DC while I was there in March!!!! Here is the URL and all of the information.... Please come and join or give your donations....:)

Ft. Worth's appears to be on December 6th

http://fortworthjinglebellrun.kintera.org/faf/home/default.asp?ievent=1112128

 

http://www.arthritis.org/programs-events/jingle-bell-run/

Catching Up!!!!

There is a great deal for me to "catch up" on as far as the blog. Many of you also read Facebook, and I had posted a bit there, but I want to try and post here, then put a link to it on FB all the time.

I finally have my teeth completely gone, and a set of beautiful teeth, like I have wanted since I was 15 years old! They are "fake", BUT hey they are beautiful. So, always as they say, watch what you ask for. :)

I will be about 90 days out before the "mini implants" go in and the dentures are modified to go on those. Thus instead of the bottom one especially wanting to come out, they will stay in place, not rub sores on my mouth etc. Don't get me wrong I love them like this! I can finally smile!

Jim is slowly improving. We are having all kinds of heck getting him a couple of the doctors he needs that will take the "insurance" he is on. As far as the "wreck" it is in "litigation" I guess, well heading that way, with both of us giving depositions a couple of weeks from now... and then it is just depending on the other parties involved how long before any type of decision is brought to us... So, we shall wait and see... I DO KNOW that a couple of the parties involved have NOT cooperated AT ALL! To not one certified letter, to no visits, to nothing, and I am not sure they have even said they will come to their deposition times. So, again just a waiting game.

I have been so thrilled with all of the things going on in Arthritis.org! I have been taking all of the classes to be an "Ambassador", and the last one is next month! That is when we are told we are "accepted" or not, and also if there is anyone who qualified for the "Platinum Ambassador" title. So, between emailing my Congressmen, going to a Town Hall meeting yesterday in fact, and so many things I have done to help the cause.... and made some incredible "friends" and met some awesome people along the way.

 I have a couple of other projects I am working on, trying to clear my schedule, so I can get back to what I know and love, besides advocacy... my blog and writing.

I will definitely try and get back tomorrow, post more, and give you more information... we have an exciting election coming up and much of this that is involved is for "We" the people, thus we need "The  People" to get up, go down to where you cast a ballot and VOTE! Griping about it, making small or large talk about it won't fix it... it has to be YOU AND I... all of us getting Congress, Senate, House and the President and Chief of Staff, along with ALL of those that are in politics and are supposed to be representing us! So, get ready, because that is going to be my mantra for the rest of the next coming months!!! GET UP, GET to the VOTING place, CAST YOUR BALLOT - called  VOTING! Believe me even though we may not think so, OUR VOTES DO MATTER!! WHETHER ONE OR MANY, THEY DO COUNT!!!

WEGO Monthly Book Giveaway! I was one of the winners!!!

http://blog.wegohealth.com/2014/08/26/winners-of-questioning-protocol-book-giveaway/

Please take a look! I was one of the lucky winners this month in WEGO's Question/Answer Book Give Away!

I am totally thrilled!

Can't wait to get it!

Rhia

Almost Forgot - Link to FB to See my New Teeth! Also other infor under a post about down!!

https://www.facebook.com/photo.php?fbid=10203697836581272&set=pb.1078281265.-2207520000.1409002262.&type=3&theater

I just had to show these off. I will of course get a much better pic of myself with them next time I am dressed and have my makeup done etc... They should be incredible for the amount of bucks they cost... and I still have more to go in about 3 months. In order to stabilize especially the bottom denture, due to the Sjögren's, we will have to do the "mini" little posts implants that the dentures will actually slide down on to keep them in place. That way I won't have to be so concerned about them staying in place, plus I will be able to eat like a normal person again hopefully. I know all of you are busy with kids back to school, etc... vacations ending, and back to where we all go once Summer Time comes to a quick stand still.... we are still in the middle of the law suit about the wreck... Jim finished PT/OT yesterday thank goodness... that was 8 weeks of 2 times a week that took lots of time up that I lost when I could have been doing more useful things. But, I kind of insisted I take him for the most part, so I made sure he was taken care of and not having to wait on some transportation to pick him up early, and then be late dropping him home... but he if he does decide to go back for another round in the future it may be that we have the transportation bus pick up him to take him and bring him home... I have LOTS of catching up to do, both on the house, on the computer, for my writing, for my advocacy..... ad all of the other million and a half other things I need to get done..... I promise to be "fixing" my blog better... I hope now can SEE where to POST a COMMENT... am trying to make it larger and a different color so you know to click it..... thanks all for standing  by myself and by Jim and all of my family through this... you guys and gals are the greatest....