Sunday, June 8, 2014
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.
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.
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
Tuesday, June 3, 2014
WEGO Sharing HUB - Xeljanz ... sponsored by Pfizer.
Information for Rheumatoid Arthritis Patients & Caregivers
(Great Results with Less Side Effects)
If you’re looking for information on Rheumatoid Arthritis, head over to the RA Patient Resources Sharing Hub, sponsored by Pfizer.
There you'll find information about the role inflammation plays in your body, as well as educational videos about RA. You'll also find digital resources that can help you manage your RA. These tips and tools from Pfizer can help support you on your RA journey. Additionally, you will find information about a savings card for a prescription treatment option for RA.
Check out this link to WEGOHEALTH and the latest from Pfizer on Xeljanz:
http://sharinghub.wegohealth.com/ra-patient-resources?utm_campaign=xelj14&utm_source=whcom&utm_medium=web&utm_content=header-link
Saturday, May 31, 2014
In Memory of A Very Young Soul - Taken Much too Early from RA... May you forever be at Peace Ali...
It is with GREAT sorrow that we at IFAA report tonight that one of
our volunteers, and RA patient, Ali McKenzie, passed yesterday from
heart failure due to Rheumatoid Arthritis. Ali was not only a young
lady, she was an intricate part of both
World Autoimmune Arthritis Day 2013 and 2014, standing in without
hesitation to run many of the live chats and ensure guests were well
taken care of. Ali, we at IFAA are heartbroken tonight, and want you to
know you are loved and will be sincerely missed.
Autoimmune Arthritis diseases are SERIOUS. Please learn more and choose to understand it's not the same as "arthritis".
This is just too difficult to believe. I had only gotten to know Ali for a few months, but with her living near my daughter in and around Corpus, we talked and got to know one another some. My heart just breaks as I find out she has passed away due to complications from RA that caused heart failure. This young woman had so much to contribute and was a talented lady of graphics, and of these illnesses and so much more. The world will "miss" her, especially "our world" of the IFAA, and all of us that she had touched during the time we have known her.
May you rest in peace Ali, and know you are so greatly missed by many. Rhia
Autoimmune Arthritis diseases are SERIOUS. Please learn more and choose to understand it's not the same as "arthritis".
This is just too difficult to believe. I had only gotten to know Ali for a few months, but with her living near my daughter in and around Corpus, we talked and got to know one another some. My heart just breaks as I find out she has passed away due to complications from RA that caused heart failure. This young woman had so much to contribute and was a talented lady of graphics, and of these illnesses and so much more. The world will "miss" her, especially "our world" of the IFAA, and all of us that she had touched during the time we have known her.
May you rest in peace Ali, and know you are so greatly missed by many. Rhia
Friday, May 30, 2014
Life, Lupus, Symptoms, RA, and Coping... (My Own Pretense Portion 1)
(Portion 1) I began this weeks ago. So, I've decided to post it, some at a time, rather than one huge post... Maybe I, can find some "reasoning" for things that I have questioned through my own writing.... so here it is .... the first portion....
Even though the "title" of this only names "4" items, there are SO many more, that if I posted it all in my title would be as long or longer than my blog post.
Rather than bore myself and everyone else with some title, I much prefer to get right into the "meat", heart and soul of writing this. Many of you have followed my "trail" for a rather long time now. Well, before I had a great deal to so the Facebook, or truly decided to delve into the realms of blogging for a good reason.
As with life, and everyone else, I have underwent changes.... changes in illnesses, changes in life, changes in the way I feel about life, what I want to "accomplish" during the rest of my time here, and we ALL have lists and lists... and if you are anything like myself, I have another list to keep up with the lists. Humans are just that, humans. As I began this, my first portion said we all change our minds, we all have things we have to live with, tolerate, long for, debate, are stubborn about, will give in, and some things in our lives , we tend to have a firm stance, and like that tree with the larger trunk, than any other near it, nothing will move it - not until the heavens and Earth someday are moved.
I've gone through SO MANY "adaptations" since my RA/Lupus/
Sjogren's/Raynaud's.... and oh how the list tends to grow along this past 7 to 8 years. Blood work, physicians, specialists, MRI's, CT's, EMG's, NCS... and it seems those tests with the initials also go on forever. You finally come to realize you are thrilled with you type EMG or any one of the other numerous "initials" for tests that someone, everyone knows what you are talking about! Finally you have found somewhere you don't have to try to type out an entire 15 letter word for a diagnosis or test! Boy, though when you reach that place, sometimes it smacks you right back into thinking, damned this is seriously becoming a way of life. When I know as much about the tests (or at least what those initials mean) as the doctor does, or understand all I am reading about in an article online without having to flip back and forth to "Google" a word, you have reached the point of "Face it, You have one or MORE Autoimmune Illnesses"!
So, we put up with the poking, scanning, tiny little needle like electrodes being put into your muscles, injected, directed, and all types of waves going through you... to this place you think, okay, that has to be the "last one". The last test, the last diagnosis, the last new medication, and NOW finally I can go on with my "life" as I had planned it before all of these turns in the road took place. Guess what? Nope! Not yet! Although maybe, you reach just a couple of things, that need a couple of scans, and only 1 new medication for now.
My body feels like it is on its last "leg"... my mind feels like I have thought every thought that have a been thinking seems as if it leaves me with no other thought that would possibly be "different" or of my own.
I feel submerged in a "vat" of vastness, not knowing if I can breathe or not, do I actually "see" something, feeling something, taste or touch an item, hand, piece of fruit, a fork, spoon, or a human? I am just a wanderer now... wondering as I wander about, never knowing from one moment to the next how to think, what to feel, whether I should "act" normal, or sometimes act as crazy as I have felt in the past two months.
I wished I knew more answers to so many questions that I have "backed up" in my mind. There is this place that seems to be over wrought with all kinds of questions, from things about the wreck, to things about my Advocacy and Ambassador in the Arthritis Foundation.... to my own illnesses... my teeth just seeming to fall out of my mouth due to Sjogren's, and the $8,000.00 it takes to get them fixed.
Even with insurance the BEST I can get would be 60 percent of it paid. Yet, that means trips to Dallas, multiple trips... whereas I already have enough trips there due to the Lupus and RA. There are all of these "new" symptoms, yet I have not been able to be given "why" they are here... why am I so terribly weak, why do I find myself more stiff, and feel as if I can't walk very far without falling... why are all of those happening...
Then there are the brain issues, the forgetfulness, the fogginess, the ability not to spell correctly, and the problems typing that I never seemed to have found out as to why... and I fall asleep all the time... I can be having a conversation and I fall asleep.. I try to watch a movie and I fall asleep... I have found myself just standing on the front porch or deep in thought in the yard and I have literally stood there and basically fell asleep standing. It makes no sense... some seem to think it is lack of sleep for me, but I get more sleep now than I have in a very long time. So, I cannot fathom it being a "lack of sleep".
Even though the "title" of this only names "4" items, there are SO many more, that if I posted it all in my title would be as long or longer than my blog post.
Rather than bore myself and everyone else with some title, I much prefer to get right into the "meat", heart and soul of writing this. Many of you have followed my "trail" for a rather long time now. Well, before I had a great deal to so the Facebook, or truly decided to delve into the realms of blogging for a good reason.
As with life, and everyone else, I have underwent changes.... changes in illnesses, changes in life, changes in the way I feel about life, what I want to "accomplish" during the rest of my time here, and we ALL have lists and lists... and if you are anything like myself, I have another list to keep up with the lists. Humans are just that, humans. As I began this, my first portion said we all change our minds, we all have things we have to live with, tolerate, long for, debate, are stubborn about, will give in, and some things in our lives , we tend to have a firm stance, and like that tree with the larger trunk, than any other near it, nothing will move it - not until the heavens and Earth someday are moved.
I've gone through SO MANY "adaptations" since my RA/Lupus/
Sjogren's/Raynaud's.... and oh how the list tends to grow along this past 7 to 8 years. Blood work, physicians, specialists, MRI's, CT's, EMG's, NCS... and it seems those tests with the initials also go on forever. You finally come to realize you are thrilled with you type EMG or any one of the other numerous "initials" for tests that someone, everyone knows what you are talking about! Finally you have found somewhere you don't have to try to type out an entire 15 letter word for a diagnosis or test! Boy, though when you reach that place, sometimes it smacks you right back into thinking, damned this is seriously becoming a way of life. When I know as much about the tests (or at least what those initials mean) as the doctor does, or understand all I am reading about in an article online without having to flip back and forth to "Google" a word, you have reached the point of "Face it, You have one or MORE Autoimmune Illnesses"!
So, we put up with the poking, scanning, tiny little needle like electrodes being put into your muscles, injected, directed, and all types of waves going through you... to this place you think, okay, that has to be the "last one". The last test, the last diagnosis, the last new medication, and NOW finally I can go on with my "life" as I had planned it before all of these turns in the road took place. Guess what? Nope! Not yet! Although maybe, you reach just a couple of things, that need a couple of scans, and only 1 new medication for now.
My body feels like it is on its last "leg"... my mind feels like I have thought every thought that have a been thinking seems as if it leaves me with no other thought that would possibly be "different" or of my own.
I feel submerged in a "vat" of vastness, not knowing if I can breathe or not, do I actually "see" something, feeling something, taste or touch an item, hand, piece of fruit, a fork, spoon, or a human? I am just a wanderer now... wondering as I wander about, never knowing from one moment to the next how to think, what to feel, whether I should "act" normal, or sometimes act as crazy as I have felt in the past two months.
I wished I knew more answers to so many questions that I have "backed up" in my mind. There is this place that seems to be over wrought with all kinds of questions, from things about the wreck, to things about my Advocacy and Ambassador in the Arthritis Foundation.... to my own illnesses... my teeth just seeming to fall out of my mouth due to Sjogren's, and the $8,000.00 it takes to get them fixed.
Even with insurance the BEST I can get would be 60 percent of it paid. Yet, that means trips to Dallas, multiple trips... whereas I already have enough trips there due to the Lupus and RA. There are all of these "new" symptoms, yet I have not been able to be given "why" they are here... why am I so terribly weak, why do I find myself more stiff, and feel as if I can't walk very far without falling... why are all of those happening...
Then there are the brain issues, the forgetfulness, the fogginess, the ability not to spell correctly, and the problems typing that I never seemed to have found out as to why... and I fall asleep all the time... I can be having a conversation and I fall asleep.. I try to watch a movie and I fall asleep... I have found myself just standing on the front porch or deep in thought in the yard and I have literally stood there and basically fell asleep standing. It makes no sense... some seem to think it is lack of sleep for me, but I get more sleep now than I have in a very long time. So, I cannot fathom it being a "lack of sleep".
Tuesday, May 27, 2014
"Empowerment" When All of Life "Strength" that had Sustained You - Suddenly is Gone - as I Thief in the Night
Honestly, I am here to write, yet I am not sure the words shall even come. The other day I had posted on Facebook and one of my friends there mentioned "I wished I had the knowledge and know how to write things, and say things as you do, Rhia".
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.
I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".
May 1st, 2014
Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.
although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.
I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.
What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.
May 26th 2014
It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.
I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....
I have given thought to that over the past week, and tried to also allow that place, that suddenly was so engrained in me, to be jerked right out from underneath me. The very core of my world was shaken on March 26th 2014.
As many of us, we have events that come into our world "that shake us down into that deep dark cavern" of where we just don't really heed was is going on or not. As the days have gone by, and I have tried to reach into my very soul, and pull out all of the things that are so precious to me, and I mean within myself, I realized even more so that a happening such as the catastrophe like my husbands car crash, not only shook me off my foundation, it has left me in a place of "shock" that I have yet to come out of, I am not sure that anyone else "caught it" or not, but his accident fell exactly one day before my Dad passed away in 2005. If my memory serves me right ( and I cannot say that is does at all) I believe Dad passed away on Easter Sunday, March 27th 2005. It hit me that very evening when we first arrived at Baylor Hospital in Dallas, that it was almost 9 years to the day of these two things happening. In a way, and maybe they also remembered but chose to not say anything either due to the circumstances that were happening at that moment. thus some of my family may have recalled it also. I just have not brought it up, for why at this time pour salt into an open wound, as the saying goes.
In such a very short span of time SO MANY things can change. Until you are thrown into the situation yourself, whatever the circumstances might be, you really cannot imagine ALL of the complexities something like this causes. From me not having my head on straight, and accidentally moving more money from an account than I intended to, so I did not realize that one of my bills that goes through bill pay had not cleared. So, here I was thinking things were fine, then I find out I did too much of a transfer into an account, and then that bill payment came through that I thought already had, so I overdrew my acct. by $.21... I felt so ashamed I was just going to bite the bullet and let it stay and me make it up, but one of the sweetest ladies there happen to have seen it, and asked me what happened. And as I told her, just all of that going on, and I took some money thinking I was good, and put it over into an acct... yet it was more than I really wanted to move, then the bill comes through I thought had been paid days and days before. She as she is, she went to the bank manager and got it reversed for me. But, still, you just don't realize how many things in your life are totally "wrecked" within the wreck I guess you could say, I catch myself looking for my car to go wash it, or now I have a very hard time sitting her at the computer. I was so used to him and I being here across from one another. Even though we may not utter a word to each other for hours, it was just the fact, we were here together. I find myself wandering through this tiny house, and wandering around in the yard, thinking I should just mow it myself. I should be able to mow those basically weeds down... and I need to spread the granules out for the fleas, and spray around the porches, and put ot fire bait, and now I have our bedroom, the ridiculous bathroom, and more over that stupid back room junk catch all room is all going to go. I am going to pitch about 90 percent of it out in trash can bags. I have stuff back there that I will NEVER use what so ever... and I know just from cleaning the windows and laundering the curtains in the other rooms, it just looked and smelled so much more fresh this morning. So, I know allow that pile of crap to go out of there, will again, give me a "new" lease on life.
I just can tell there are some thing that my brain is not quite comprehending... or if I don't have a note or a list (which was already an issue for me) then I am just not on "target".
May 1st, 2014
Ah, the "sounds", Sights", smells, and renewed feelings that come with the rebirth of Spring. The trees opening up their green leaves, as the wildflowers start to pop open. Of course the birds where we are and all of their "voices".... just an amazing sound on a Spring morning just as dawn breaks... and like a silent whisper into a rather loud victory march, the sun comes forth to warm us up once more. Assuredly we can't say that weather has been "odd".... odd, hell, down right insane. I had golf ball sized hail just last week pounding down up us, and you have to wonder are they all practicing with balls of ice for "T-Ball" season... they can absolutely do damage,that is for sure.
although just as quickly as that "rogue" storm marched in, it left us, only to leave a path of destruction from Louisiana to the Florida Panhandle. Yet, on the other side of the nation, California dealing with their the Santa Anna winds and the driving force in fires that burn thousands of acres and hundreds of homes... and they have just barely started.
I've I had tough go of it this past two weeks once again. I have felt lousy and not quite myself, since before I left for DC the last of March. And even half joked about us all going to have pneumonia on the Tuesday we went to the Capitol. It was snowing huge, very wet flakes and it was cold.... even with an umbrella, coat and wrap it was not very pleasant weather to say the least.
What was to follow on that fated trip... came as a shock wave... a tidal of disbelief, and every kind of emotion you could be possibly dream of. I have tried my best to not question, "why"... because if I need to know then it will be revealed to me. I still believe we have the "will" to take our own paths, yet we are somewhat predestend as to what those paths are. I have began to already realize things about me, that I did not know existed, until that day of the accident. And I also realized for the 1st time in my life, it was okay to say "no", I can't. I never thought about me ever "refusing" to help someone, or do something for someone, but I have to had to make those choices these past weeks. I can't be in three places at once, I cannot run on 3 hours of sleep for long, I have to have time to decompress, or I will and am ill. You can throw in the Lupus, Sjogren's, RA, and all of the other issues physically but the point it that I allowed myself to say, yes, yes, yes when I should have been politely saying not this time, but on the next go round I hope to have some sanity back in my life. I continue to find it difficult to even write here... even though I have a billion things to talk about... my new car, which is awesome, the progress Jim has made which is fantastic, Spring coming out, and hopefully getting an oral surgeon closer to begin the journey about my teeth. I can say eventually I will have the prettiest smile I've ever had for sure. I am wide awake, yet I honestly don't want to do this either, and coming from me that is terrible.... I once again have misplaced that inner voice, that keeps me coming back to write over and over again... it has hidden itself now for awhile, and when it finally reveals itself it will have much to do to make up on.
May 26th 2014
It has been awhile... too long really. I've not even truly been here but glad I have come in to see that many people had been following along on my blog lately. I am not sure if they is due to the horrible accident, my wanting to go and then enjoying DC so very much (and I apologize) I WILL talk about it soon. I've just not had the strength to "face" that very last hour or so of that fateful day. Thus trying to tell about ALL of the very incredible things I learned in DC and moreover how many wondrous people I met... it has truly been one of the greatest trips in my life. I surely hope I get "picked" or get into the "platinum status" for Ambassador before next Summit, so I maybe able to go again. I certainly will if the chance arises again.
I've been trying mentally and emotionally with my "reasoning" behind why I am having suck a difficult time of putting words and sentences together.... I am so embarrassed by it, that I have almost am in fear to post anything I write, because my fear is it will not make much sense. I know when I had the pneumonia, I had not been able to type anything that made any sense what so ever. I was terrified the day that happened. That is one say that I was probably more in fear for what was going on with me then any other day I can think of as far as my own self. I was trying to type out an email... I continued over and over to misspell, to type incorrectly, to use the wrong words for what I was trying to say... and as I stood up and realized I was hallucinating so badly... I felt faint but I was hearing things and seeing things. that were not there... I was just walking around the house like a crazy person! I just could not imagine what was happening to me. I had not taken any new meds, I had felt lousy, but I had been fighting a kind of like sore throat thing off and on and felt so drained of energy, but what was causing this so extremely unusual feeling... like I my faint, dizzy, my brain just not "working".... my first thought was to take myself to the Urgent Care Clinic across town. So, Happened Mom had her car that day back so she could go to church that morning, so I called her and let her know something was not right... Thus she came and got me and took me to Urgent Care... Thank goodness, the doctor that saw me happened to also be one of our ER physicians, so that worked out well. He was concerned enough to really send me to ER but then after we saw the lung XRays and he knew I really did not feel like going to ER and further being poked, stuck, blood drawn etc put through another battery of tests, the sent home with probably the say thing he gave me... high powered antibiotics, cough medication, an inhaler, and other pills for my breathing... so fortunately I got home, got on the sofa with my meds and the puppies and we were there all except for the very necessary done... all other stuff was put off until I felt better. Then both my cardiac doctor and my PCP BOTH still here the pneumonia in my lungs. So, I had another round of antibiotics, also my 2nd infusion of Rituxan has been postponed until my lungs are completely clear on an X-ray.... and in the mean time I am hurting like hell due to the lack of a biologic...I t has been a very rouogh 3 or 4 days... Jim is home and he is of course working much harder not having the wheelchair and relying solely on the cane... and me just trying to get used to all of the things that are different now as he takes over a new "home" and new ways to discover how to do things. So, we are "okay" he does to Outpatient Therapy on Wednesday, tomorrow... in Waxahachie..... and for me I am working on getting these teeth all pulled and the "mini implants" put in ... along with insurance to hopefully pay 60 percent of it! Again we take a step forward daily and learn to adapt to this new course... this new pathway of life.....
Saturday, April 19, 2014
Just a Quick Post and I will promise to post more tomorrow....
I've been going back and forth over my "eye" stuff. The double Vision. It has progressed and gotten much worse. Sometimes even now, with my glasses on, it rears its ugly head.
Since everything has happened as it has I already missed my Rituxan infusion and have to reschedule it, my new dentist who also works out of the same facility SW Med, in Dallas, and I am in desperate need of both of those. Plus I feel i may need to see the eye specialist again but I am not sure there is anything else to be done about it,,
I've narrowed the entire issue down to two "diagnosis"
First of all "retinal vasculitis" and moreover all of it definitely lines up as symptoms of Myasthenia Gravis. In fact "MS" and also Myasthenia Gravis came up at one of the last Neurologists I went to. He said it is also difficult to really "diagnose", due to like many of the other autoimmune diseases, there is no "one" test that tells them yes or no. There are a couple of blood tests out there, but just like RA, Lupus and the rest of them... they could be "serum negative" but you have it or be "serum positive" and not.... thus counting on tests right now is usually nuts...
But, my symptoms just tell the story and map out each and every way the symptoms go... so I am including a couple of articles about these, and I plan on doing more research myself. If any of you find something or come across some good information I would so appreciate it if you would post links here etc...
http://www.ncbi.nlm.nih.gov/pubmed/11257479
http://www.aao.org/publications/eyenet/200607/neuro.cfm
There are lots of good links out there with information so if you fall upon anything that mentions this, as well as anything that might help with Jim's recovery from the accident and trying to learn to walk again... any and all is so needed and appreciated..... Rhia
Since everything has happened as it has I already missed my Rituxan infusion and have to reschedule it, my new dentist who also works out of the same facility SW Med, in Dallas, and I am in desperate need of both of those. Plus I feel i may need to see the eye specialist again but I am not sure there is anything else to be done about it,,
I've narrowed the entire issue down to two "diagnosis"
First of all "retinal vasculitis" and moreover all of it definitely lines up as symptoms of Myasthenia Gravis. In fact "MS" and also Myasthenia Gravis came up at one of the last Neurologists I went to. He said it is also difficult to really "diagnose", due to like many of the other autoimmune diseases, there is no "one" test that tells them yes or no. There are a couple of blood tests out there, but just like RA, Lupus and the rest of them... they could be "serum negative" but you have it or be "serum positive" and not.... thus counting on tests right now is usually nuts...
But, my symptoms just tell the story and map out each and every way the symptoms go... so I am including a couple of articles about these, and I plan on doing more research myself. If any of you find something or come across some good information I would so appreciate it if you would post links here etc...
http://www.ncbi.nlm.nih.gov/pubmed/11257479
http://www.aao.org/publications/eyenet/200607/neuro.cfm
There are lots of good links out there with information so if you fall upon anything that mentions this, as well as anything that might help with Jim's recovery from the accident and trying to learn to walk again... any and all is so needed and appreciated..... Rhia
Friday, April 11, 2014
Wanting to try and Give You an Update
Of course many of you already know about all that has taken place with myself and my husband, the accident, DC and the entire gamut of the past three weeks. What began as something so wonderful, was so abruptly ended in such a disaster.
I, nor honestly any of us really know what the hell happened out there coming into Dallas on I-45 a couple of weeks ago. There were three vehicles, 2 of which claim that "saw" it all". One man that says he "saw" from his own front porch what He thinks he saw, yet in the blink of an eye, it seems almost impossible for anyone to have just "happened" to have walked out at the exact time that something like this was taking place. It cab happen, and I understand that. But, the odds of something like that happening, and then between "hearing" and turning around to also "see", as I said odds are what you saw and/or heard were more than likely two different things.
I also know there was people that told myself and the gentleman that was at the time helping in in D.C. after all this took place, that my husband was NOT at fault. As a matter of fact, we both were told by the same "trauma" unit physician about the wreck itself, as much as they knew then, the injuries, how many and what "type" of vehicles were in involved. The details were very specific at that time, even down to all of the injuries they thought Jim had, and there was a long list. So, whomever this Doctor was (and I have his name) and also the name of the nurse who called the first time. As I said they repeated the list of injuries, the information about the accident and even went so far to say that it appeared an 18 wheel tractor-trailer that "ran into the back of our car.
Well, in the first place, lesson learned, get a lawyer immediately, if is it fairly bad accident and even if no one was injured, just get one. Secondly, do NOT wait the "10" days for a police/accident report to be "ready:". If you have to CALL three times a day every day until you have it in your hands. That bull about "10 days" was bull. My own insurance company and the others involved in the accident had much quicker than we were told it would be ready.
KEEP everything! Every note, every receipt.... parking, eating, anything... keep each & every receipt. At the time those things do not seem all that important, but that night I took a fall at the very hotel we stayed at, I kept all of my receipts from both. I did not know that I maybe needing medical attention or how badly I was injured etc. Actually I thought I just had a cut all the way through my lip and a scratch or two. Now, I am dealing with an infection and dry socket from a tooth that had to be pulled, along with now I have a chip in the tooth next to the other one, and my lower right hip/back is just giving me the blues as far as pain. Of course do I know that it is he fall? Well, speculation. But, I was not having issues with any of that until about 7 days later. Then it started acting up. Even an any kind of fall, or accident sometimes it is a week or more before all that is really wrong. So, never get up from a fall, or any type of thing such as that, and completely think oh "I'm okay"... you may think... but bruising on the inside, especially deep so nothing "feels bad, or looks bad", until it has had time to manifest itself in the right manner,
For the most part right now I wanted to let everyone know, that as lousy of a time this all is, right now we are just trying our best to put one foot in front of the other. When something such as this takes such a toll on your life... nothing I don't think every truly returns to what you thought was "normal again".
No matter whether an accident, or a chronic illness, anything that "moves" your life in such a dramatic way, forever more gives you a different vision...
I am still not near the place I am really comfortable to write about all of it. I am just trying as I said above, to keep my ducks in a row! I have several things "due" like my Mom's tax form, that I GOT to get done and in the mail by Tuesday, or file an extension...a which if I have to I will..
I also have some "brain fog" type mess happening to me... I think honestly what I need to do right now, is get off this computer, fix me some breakfast & watch a couple of movies for now. I am feeling lousy and my mind does NOT work, when I feel physically crappy... so I maybe back on today and I may not be. Also, don't panic if you happen not to see me post etc this weekend. I do have to finish those papers and get them in the mail, plus I have several other things hanging over my head I just need to get done and off my plate, When those things bothering me, I am never going to put my head back on straight. Plus whatever is going on with my lower back and hip are not helping things at all. I can barely sit HERE when I KEEP TRYING TO FIND SOME WAY it does NOT hurt to sit. So, I am off for a bit today.... and I will sign back on and talk more once some of this stuff is off my shoulders,..
I, nor honestly any of us really know what the hell happened out there coming into Dallas on I-45 a couple of weeks ago. There were three vehicles, 2 of which claim that "saw" it all". One man that says he "saw" from his own front porch what He thinks he saw, yet in the blink of an eye, it seems almost impossible for anyone to have just "happened" to have walked out at the exact time that something like this was taking place. It cab happen, and I understand that. But, the odds of something like that happening, and then between "hearing" and turning around to also "see", as I said odds are what you saw and/or heard were more than likely two different things.
I also know there was people that told myself and the gentleman that was at the time helping in in D.C. after all this took place, that my husband was NOT at fault. As a matter of fact, we both were told by the same "trauma" unit physician about the wreck itself, as much as they knew then, the injuries, how many and what "type" of vehicles were in involved. The details were very specific at that time, even down to all of the injuries they thought Jim had, and there was a long list. So, whomever this Doctor was (and I have his name) and also the name of the nurse who called the first time. As I said they repeated the list of injuries, the information about the accident and even went so far to say that it appeared an 18 wheel tractor-trailer that "ran into the back of our car.
Well, in the first place, lesson learned, get a lawyer immediately, if is it fairly bad accident and even if no one was injured, just get one. Secondly, do NOT wait the "10" days for a police/accident report to be "ready:". If you have to CALL three times a day every day until you have it in your hands. That bull about "10 days" was bull. My own insurance company and the others involved in the accident had much quicker than we were told it would be ready.
KEEP everything! Every note, every receipt.... parking, eating, anything... keep each & every receipt. At the time those things do not seem all that important, but that night I took a fall at the very hotel we stayed at, I kept all of my receipts from both. I did not know that I maybe needing medical attention or how badly I was injured etc. Actually I thought I just had a cut all the way through my lip and a scratch or two. Now, I am dealing with an infection and dry socket from a tooth that had to be pulled, along with now I have a chip in the tooth next to the other one, and my lower right hip/back is just giving me the blues as far as pain. Of course do I know that it is he fall? Well, speculation. But, I was not having issues with any of that until about 7 days later. Then it started acting up. Even an any kind of fall, or accident sometimes it is a week or more before all that is really wrong. So, never get up from a fall, or any type of thing such as that, and completely think oh "I'm okay"... you may think... but bruising on the inside, especially deep so nothing "feels bad, or looks bad", until it has had time to manifest itself in the right manner,
For the most part right now I wanted to let everyone know, that as lousy of a time this all is, right now we are just trying our best to put one foot in front of the other. When something such as this takes such a toll on your life... nothing I don't think every truly returns to what you thought was "normal again".
No matter whether an accident, or a chronic illness, anything that "moves" your life in such a dramatic way, forever more gives you a different vision...
I am still not near the place I am really comfortable to write about all of it. I am just trying as I said above, to keep my ducks in a row! I have several things "due" like my Mom's tax form, that I GOT to get done and in the mail by Tuesday, or file an extension...a which if I have to I will..
I also have some "brain fog" type mess happening to me... I think honestly what I need to do right now, is get off this computer, fix me some breakfast & watch a couple of movies for now. I am feeling lousy and my mind does NOT work, when I feel physically crappy... so I maybe back on today and I may not be. Also, don't panic if you happen not to see me post etc this weekend. I do have to finish those papers and get them in the mail, plus I have several other things hanging over my head I just need to get done and off my plate, When those things bothering me, I am never going to put my head back on straight. Plus whatever is going on with my lower back and hip are not helping things at all. I can barely sit HERE when I KEEP TRYING TO FIND SOME WAY it does NOT hurt to sit. So, I am off for a bit today.... and I will sign back on and talk more once some of this stuff is off my shoulders,..
Wednesday, April 2, 2014
World Autoimmune Arthritis Day/Convention - Check out the details below!
Please be sure to Check out WAAD14!!! The Premiere in a World Autoimmune Arthritis Day/Convention! Please see all of the information attached for all of the information! There are 47 hours o NON-Stop information, experts, booths, and so much more... We look forward to Seeing YOU THERE!!!
Registration for World Autoimmune Arthritis Day is now open! We have 47 hours of continuous live action, including chats from Christine Miserandino of ButYouDontLookSick.com, Randy Horwitz, author of Integrative Rheumatology, Arthritis National Research Foundation
and one of their top scientists will be talking to YOU about research
and MUCH more! 40+ booths from nonprofits around the world, an interactive
Day in the Life of an Autoimmune Arthritis Patient experience where you
can send Challenges to supporters so they can understand!
Pre-Registration is open NOW for $5 USD and you get THIS bag WHILE SUPPLIES LAST for no cost, just shipped to your front door. Why a bag? Because when you have autoimmune arthritis shoulder bags are helpful to tote groceries, carry items around the house and more. Why pre-register? We need to know how much space to reserve in the Virtual ONLINE Convention.
Learn more, pre-register and we challenge you to invite 5 friends- go learn more at www.WorldAutoimmuneArthrit
World Autoimmune Arthritis Day is a 47 hour ONLINE Virtual Convention you can attend from your computer! The virtual doors open at 6am ET/USA May 19 and close 5am ET/USAMay 21st
Pre-Registration is open NOW for $5 USD and you get THIS bag WHILE SUPPLIES LAST for no cost, just shipped to your front door. Why a bag? Because when you have autoimmune arthritis shoulder bags are helpful to tote groceries, carry items around the house and more. Why pre-register? We need to know how much space to reserve in the Virtual ONLINE Convention.
Learn more, pre-register and we challenge you to invite 5 friends- go learn more at www.WorldAutoimmuneArthrit
World Autoimmune Arthritis Day is a 47 hour ONLINE Virtual Convention you can attend from your computer! The virtual doors open at 6am ET/USA May 19 and close 5am ET/USAMay 21st
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo... -
I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...