Help Out... Become An E-Advocate for the Arthritis Foundation and have YOUR VOICES HEARD on Capitol Hill!

 I wanted to share something with all of you about the Arthritis Foundation. Of course they have several ways you can "help" the cause. One of those is to become an "E-Advocate". Which they send you an "updated" newsletter about 3 to 4 times a YEAR, and they do NOT give out your information, plus they may send you an occasional email about say "RA, osteoarthritis, etc" that is something they are "working" on to get the Congress people to be educated, and give them a guide on how the "people" feel about it. You never HAVE to do anything. But, if they send something you are passionate about, say a change in how Medications "tiers" are now, which is a huge one for all of us, you can have an email sent to your own House of Representative and/or Senators... it is already made out for you... you just pull the ones from your own location through a zip code, and hit send, OR if you like you can certainly add or change what you want to say. As I said, you do not get any daily junk mail, adds, or anything of that sort. In fact I am attaching the URL explaining what an "E-Advocate" does. If you would like to be one, please email me, send me a message or post. It is a part of something I am working on to become an Ambassador for them, so again I can take OUR voices to Congress and Capitol Hill and represent ALL of us... and I did! And I did see the great results, even in my own Congressman honestly, so I know this works. Here is the URL... if you do decide to become one, all I need is an email address, your zip code, & a first and last name. I have to turn that in so they know I completed that 'assignment". I ask of you to do this, because that gives me a chance to take YOUR worries, cares, concerns, and what you want to see changed in the health field for you, our nation, and tell our own government how we feel.

http://www.arthritis.org/advocacy/inside-advocacy/

Some Updates on the Wreck, Jim's Progress, My own Illness, with the pneumonia, teeth etc. and life

As you can tell, we are still reeling in many ways from everything over the past several months. Jim is home, and he is doing quite well. Honestly, much better than I, Him and I think even his doctors thought he would by now. He still is suffering from some abdominal pain, but more when he eats, and all of that pushes against those ribs. He had about 19 broken, at least on in two places. So, as he drinks water during the day, eats and so on, it seems due to the "lack" of nerve feeling, and then the "SOMEWHAT" odd places he right now has no feeling, the pain is better, but he is still dealing with some, especially when he is very tired, or after outpatient Rehab a couple of times a week.

Anyway, it seems I have been able to kind of "open up" for the first time in a very long time today and "hear" my own "voice" again... as far as my writing goes. Honestly, I truly felt I had lost all of it this time. For many reasons... first of all, my mind was not here, just the shock of the wreck, the plight of my own fall, my teeth, or lack of them, a continuous flare, not knowing where Jim would be, whether he would even walk again was a huge question right after all of the damage, the surgery, and everything there... more spinal cord damage was there, than initially thought... so there were many things holding me back from being able to truly "write" what I was concerned about. I even was ashamed of myself about feeling not up to truly doing my volunteer and advocacy work, which I love. But, I realized that will and is coming back now... it was just everything going on that those things were temporary. I am already putting a foot forward, baby steps, in trying to get myself settled back in my duties of volunteering, advocacy, and ambassador things.

but, since there have been a few more updates over the past week or so, I thought after posting to Facebook, I would also post here... I HAVE t get myself back into my blogging. It is so very important to me... and I feel my blog will continue to be somewhat the same, but I feel I will be adding more things in the realms of spinal cord injuries, rehab, and I will be adding more information about things such as Baclofen, which they use for SCI's and MS also. I have also been dealing with more other realms of medical issues, that also will tie into the autoimmune illnesses too. So, if you see me taking a bit of a different track, know I am "adding in" not taking away at all.

So, I will "paste" a couple of my FB posts below from today. They have updated information that some of you maybe interested in.... much more to come (this has not taken all of my will power yet)... even though it such made a dent in it this time.....


Facebook posts below from today and yesterday.....

Hello all..I've been trying to get here to update everyone on Jim's homecoming and first f/u with his back surgeon, and then my situation. But it seems too much to do, too little time to do it, and feel like hell... all three make for some frustration. The back surgeon was VERY pleased with Jim's recovery process! In fact, I think he was almost overwhelmed at that fact, that since they have NOT gotten Jim's wheelchair out to us yet, that he walked the entire way all day on Thursday with his cane!!!! :):) The wheelchair is actually just for LONGER walks, like through a huge store, or to the doctors where like Baylor it is a nightmare sometimes to walk to where your doctor is, etc. He is going over to Rehab twice weekly in Waxahachie, then doing his other exercises etc, walking here at home. He has now began to have some spasticity issues, which usually show up about 8 to 10 weeks after a spinal cord injury. So, we had asked about Baclofen, and he said absolutely. He thought he might already have been put on it, while in Rehab. But the symptoms of it did not really begin until about a day or so before he was to come home. So, we were not sure at the time if that was what it was or not. But, it is and just like someone with MS... it should help immensely. From there we had to go have my pain pump refilled. Which now they can do in their office, thus not the nightmare of outpatient at the hospital, much quicker and much LESS expensive. My lung X-ray last week on Thursday came back and appears the pneumonia is gone, even though I am still wheezing, and rattling. But. they thought it was more of an asthma development, and put me on another inhaler, and I am already on Singular, plus a huge 60mg dose for 5 days of Prednisone once again. But the next day, of course never happens while you are AT the doctor, I got up to about 4 massive ulcers on the bottom of my mouth and something in my throat that hurts like hell. I have a tooth (more than one) that HAVE to be pulled, but no way he could work in my mouth as it was, thus I am trying to get some of it healed up for Monday, so I can get the ball on the roll. I am thinking having these rotten teeth, what few I have left, could be also causing me to have the other issues, almost like a constant flare. Also, I still have not gotten to have my 2nd round of Rituxan due to the pneumonia, thus one ankle the right one swells up horribly, and the pain is back in my fingers, thumbs, toes, ankles and feet with a vengeance .... but I also run the risk of having further mouth infection, if I am on it, when having 5 teeth at a time pulled, and going through all of that, and trying to not have a flare, BUT moreover NOT getting dry sockets and infections. So, I am in between a rock and a hard place. The pump is filled through September, yet my pain over the past week has been terrible. I think just ALL going on, and as I said I seem to be in a constant flare... anyway, so between the two of us, lots going on. We kind of have to grin about it, because it seems both of us are dealing somewhat with the same issues now when it comes to our physical bodies.... We saw the Xray of the surgery, right after it was done that night. He has a set of 7 fusion bars, so he beats me by 4...LOL! funny but not, talk about looking odd though... I know when I saw mine, it was like WOW, that looks like something I would work on the house with, nuts, bolts, screws and bars. So, for all of you that have been with us through every step of the way, I again and Jim too, appreciates every one of you.... we also both ask for your continued thoughts, well wishes and prayers. We have a long way to go for both of us.... but as I told him yesterday, from what I watched about 6 weeks ago when he was at the hospital, versus what I see now at home.... I now see much of the "normal" parts of Jim more and more each day! :):) He is still in pain, but he is determined to be able to walk without the cane, which may or may not happen. But even if the cane stays, honestly he is a walking miracle. Between the both of us and all we've been through, my pain doctor was almost in tears. He did not know how badly things had been since he was me earlier in the year for my pump refill. And I had forgot to mention I had fallen that same night of Jim's surgery also... We are truly blessed, but I admit these last few weeks, sometimes I have to truly "hunt" for those blessings... the pneumonia and all of my own weakness, pain, my mouth, the ulcers, my throat, a huge swollen ankle.... I have to make myself STOP every once in a while, and truly THINK just what a blessing we do have.


AWESOME NEWS!!! OUR LAWYER FILED SUIT AGAINST THE 18 WHEELER COMPANY THAT RAN OVER JIM. It was official yesterday! And THEY LOCATED THE CAR! We thought it may have already been crushed, BUT the company that bought it from the auction, still HAS IT! So even better! OUR PICS were GREAT BUT NOW they have their own Professional inspector that can see it up close and personal!!!!!! :):) This is truly incredible news....

I so appreciate all of the "Thumbs up" and support.... as things began, you really do not think in the "monetary" terms of something such as this. But, now as we see the bills coming in, we think about having to buy the car, time lost for his work, time and money on Rehab, traveling, doctors, medications, pain and suffering, the issues of me "losing" my care taker in many ways, modifications to the house, you name it... now this part begins to set in.... and even though I am NOT ONE for believing in "suing" as some do... under these circumstances, I truly believe if all is as we have seen and heard, this company should be responsible for ALL of it. They have refused to even speak to our insurance company or our lawyer. Even turned away certified letters, or even allowing the lawyers to speak .... they have told "lies" as far as we know about the happenings of that event... as far as even having the driver of the 18 wheeler say he was NOT in a wreck, and he was not driving that truck that day. It was also picked up and towed away by guess who? Their own company, very quickly, even before the investigation got underway after the accident... thus they are refusing to cooperate in any fashion at all. That tells me... they are hiding something, or they would be out telling the story as "they" saw it.... as far as the two (without a driver's license due to NO INSURANCE anyway) in that Tahoe they are already out of the scene. They also would not cooperate at all, and basically "disappeared" along with the so called "witness" that just happened to walk out on his porch about the time our car went sailing under the Tahoe, (due to the 18 wheeler shoving the car under it)... anyway, that person suddenly disappeared also. My insurance refused to pay them a dime... and closed that part of this weeks ago. So, the portion now is the 18 wheeler tractor trailer business who owns the vehicle... As I said I do NOT believe in suing ... and honestly, probably may honestly think about having a "side suit" in for my own losses due to losing Jim as my caretaker. It has caused my own health, mental and emotional status harm... and our lawyer is the one who even mentioned it. He said that it may take longer to try and get that all in order and settled, but we should think about it due to my own pain and suffering, health issues, and the fact that now we may both be facing totally disability... and "no" outside caretaker. My Mom sure can't... bless her heart, she is doing more than she should right now at home I think because she hates to ask me... yet she should allow me to do some of what she is trying to do before she winds up accidentally hurting herself. Thus, it is up to the both of us, possibly later on some in home health care... and like I told Jim, I don't know where my own health issues may take me... I may face being on a cane, etc... in the future... the progression of the Lupus, Sjogren's, RA..... etc. has been extremely bad in the past 6 months.... so we both maybe having to use assistance to walk etc... anyway, just another "piece of the pie" of life... when things like this happen. You don't want to face these parts, but there comes a time you have to.... it sucks... but it is one of those "necessary evils"...


Question for those of you on "daily prednisone"? What dose do you take if you are on a daily dose of it? I have been on a maintenance dose of 2.5 daily, which honestly I cut down, it is supposed to be 5 mg. daily.... but the doctor told me as long as I was feeling okay, the lower the better... BUT when the doctor put me on the 60 mg tablets (2 20's daily) for 5 days... the swelling in my ankle is almost gone, and I've noticed some of the fatigue better, and anywhere I have any type of inflammation going on, even with the "asthma" issue, that is so much better. BUT we know that another "necessary" evil, is this "wonder drug", prednisone, or the "corticosteroids" .... they do magic... but they also can freaking wreck your body at larger doses for an extended time if taken. So, now I face another dilemma... do I ask to have an "increase" of like 10 mg daily.. or so ... I fear I will blow up like a balloon and have MORE issues caused from the prednisone... gosh this crap sucks. 

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

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

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