I have spent moments, hours, days, weeks, even I am sure YEARS trying to figure out exactly "why" my life seems to be in a "chaotic" whirlwind almost daily.
Yes, having autoimmune and/or any type of "chronic illnesses" along with "chronic pain" puts your life in turmoil more often it seems than not.
Yet, that still does not explain why, with only 2 adults, 2 pups, in a tiny two bedroom, barely over a 1,000 sq foot home, and a back and front lawn that are definitely average in size, along with a "back forty" a small bit of land that up until this fall had the neighbors sheep and goats on it, so we never had to be concerned on it. Why it seems that EVERY DAY of my life I look around, and I am constantly dusting, vacuuming, mopping, sweeping, picking up things, doing laundry, taking out trash, scrubbing tub and toilet. Yet both inside and out, I feel like it appears that this house is dirty, and it is just falling down around me every day a bit more.
When I bought it, I put a LOT of money into it, there was still SO MUCH "restoration" that needed to be done, yet the money ran out. So, even though there was at least 10,000.00 or more put into it, for painting, redoing floors, carpets, furniture, redoing plumbing, a lot of the electrical rewiring, lots of new plumbing, a brand new shower/tub, a new toliet, taking in a wall, knocking one out to have a bit of closet space and to make the bathroom larger. Yet, when it came to redoing flooring in the bath, kitchen, doing the finishing work i the laundry room, a carport had to be put up, and now the list is still endless.
We had some storm windows put in, and had a great deal of insulation put in the walls and attic. Yet, one bedroom did not get the new windows, and the windows are so old, the glass brittle, they lack most of the correct Pins and "glazing" that should be around them. That entire room has really never had been redone, so it needs paint, the windows repaired, a new ceiling fan, carpeting laid, and along with now the outside of the house needs a complete paint job, and some rotten board repaired.
So, I see one of my "mistakes" was not considering just how much MORE I needed in finances to really PUT this home back to its original state. I lacked about 5,000.00 back then, and now with other things going on, it is more like 10,000.00 more that needs to be put in... a new roof, the ceiling in many of the rooms really need to be either repainted or redone. The floors in the kitchen, bath and laundry room laid in. The walls that are in the bath need to be some still put in, and/or "mudded" and textured for paint. So, I should have known that without ALL of those funds, trying to "make" this house "look" neat and clean is very difficult, if you still have "portions" that are not yet up.
So, I look around, and even though SO MUCH work was done, and ALL for the most part myself and my husband did it all. From redoing hardwood flooring to painting, texturing, putting in a larger shower/tub, all of the plumbing, still the house no matter HOW MUCH I clean it, to me it looks dirty. I can dust, mop,sweep, do laundry, and almost every day it could be done again. Nothing ever looks "clean". Even though I KNOW it is, when it is "old" stained, and needs replacing, it just never appears to be clean.
Of course, then there were a stove/oven, the refrigerator, the washer and dryer, bed, furniture for the living room, and the list of all of those things, from the "renovation" work, to all of the other items needed to run a home, lawn mower, weedeater, tools... we had to buy a huge array of tools, saws, screwdrivers, wrenches, tree trimmers, you name it, of course if you do lawn work, and work around your home, you know just how many tools that can take. Blinds, curtains, sheets, towels... yes, we had "some" of these after being together for a pretty good length of time, but even those were beginning to show their own signs of "wear and tear".
So, then come along, and I became "chronically ill" - with autoimmune illnesses, that led into many surgeries, doctors, tests, you name it, I went through it. It seemed endless. Then, many of the things I could do, no longer was I able to do, when it came to the DIY around the house. I had both knees replaced, a shoulder replaced, surgeries on other joints, my neck had to have surgery, then I had "double hernia" surgery, not that long ago... thus me being able to even, "mow", do things in the yard as I once did, many things in the house, either I cannot do them anymore, or it takes me 5 TIMES as long as it used to.
My energy level is constantly up and down. The fatigue at times is just horrid. The brain fog, now has "captured" my mind so much, that even trying to write some days seems like it might be impossible.
So, now after being in this home, that we loved, we wanted, we wanted something we could "FIX UP" ourselves... yet, now it needs a new roof, we need gravel under the carport, windows finished in that back room, carpet laid in there, the house needs a painting all over... and again the list is endless .... and again it seems no matter how much I clean, how much I sweep, it seems nothing is ever "finished" or clean.
Texas is known for its "dust" that seems to come from no where. But, there is a constant battle with a grey dust that seems to settle daily on everything. As I said in the beginning, it just seems endless.\
What makes it even worse, I would much rather be here, at the computer, writing my book, so I can get it published. Yet, that always seems to be the "last" thing on the bottom of an endless to do list. So, by the time I reach down and pull up more things to be done, I am too worn out, physically, mentally and emotionally to really put myself into the writing as I want to.
So, now I sit here, daily, wanting so badly for things to just STOP for a few days, stay clean, not have endless errands to run, or things to do like shopping, mail, laundry, cooking, mopping, paying bills... all of that could just be put on hold for a few weeks so I can have some quality time to write...
Right now, it is almost 1 PM. I am on "empty" as far as energy, with sheets to be put back on the bed, and other clothes to be hung up or put away. I need a shower, and I'm drenched in sweat from the humidity. I have already swept, done laundry, mopped, dusted, including under the bed, behind it, and so on, it id trash day and after a holiday and a massive amount of bad weather I had 3 can FULL of not just trash, but limbs, and 4 other huge limbs too large to cut up. In between, I've done some things on line, but I am worn out from these past few weeks of energy.... and it seems there is never a break. I began trying to work on the inside windows in the back spare room. Well, that is going to take time to sand down, fill in so many places with wood putty and then get them ready to paint. After that, they have to be fixed from the outside with the pins and glazing which is very time consuming. I have a total of 5 windows, all of which need that work on them. I actually still have a broken windows from the hail storm last year. I had hail break a window when I was ill with pneumonia, so it is taped up and sealed up the best I can until I can get it measured and have someone to help me put it in. I can, but I need another person to hold it in place, as I can't hold it and pin it at the same time..
So, hind sight is "20/20".... there are so many things I look back on now, and so wished I would have done differently. I can't tell it all here in one post, but from some of my "relationships", to homes, to where I am living in the nation, to health problems, jobs... and TIME to write my book! That is probably THE MOST important thing to me, is to FINISH THAT BOOK AND GET IT PUBLISHED! But, how does ONE person do it all? And then have enough "time and energy" to feel like doing it all, and then spending time on my book daily.
By the time I've been up since sometimes 5AM, and 4 PM rolls around, I am totally exhausted. I wished I had an easy answer... I wished I had any answer.....
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Showing posts with label autoimmune illnesses. Show all posts
Showing posts with label autoimmune illnesses. Show all posts
Thursday, May 28, 2015
Sunday, May 17, 2015
Sonograms!!?? Why have Doctors NOT already done these???
This just totally blew me away! I've fussed and griped for YEARS about how each and every time I've had to have a "joint surgery" and how badly I was in pain; plus do to my joint history, the, the DJD. the DDD, the RA, Lupus and the list goes on and on, when I go in with a joint hurting, it usually means we are destined for surgery, maybe even replacement. I recall when my left elbow gave me so much trouble, and not long after my left shoulder began to drive me insane with pain, loss of range of motion, stiffness, and the entire gamut. I went through all of the tests, the MRI's. the CT's, with and without "contrast", X-rays, medication and nothing usually worked. I may have some relief from a corticosteroid injection into the joint, and that may last for a day, month and sometimes even a year. On my right shoulder, I had several rounds of injections, way before we did any type of arthroscopic surgery. Yet, even though all of those "expensive" tests, that were supposed to be the "gold standard" when it came to diagnosis, may show some damage, spurs and so on, BUT, when every surgeon that did my various surgeries actually got to "see" the massive amount of damage in the joint, they then understood why I was so adamant about NOT using those tests as much, as more "heavily weighing" from my long term symptoms, them actually getting worse than ever better, and that there much more damage in the joint than any type of scan, MRI, and so forth ever would show them. In fact, my orthopedic surgeon who did both my complete right reverse shoulder replacement and my 4 level cervical neck surgery, told me himself. The damage was so deep, and it was extremely bad, but there was no way it would have shown on any test. Sam thing with my neck, it was the same with my elbow on the left, my shoulder on the left, and both knees. It never failed that the doctors would always tell me that what they actually saw by doing the surgery, was far more worse, than any type of a scan, MRI and so would have ever shown.
I have also said that I felt that any "scan", MRI, X-ray and so forth is only as "good" as the person it with experience and knowledge to read them. I can just tell, from all I've heard about and read, that often things are NOT found, or they are far worse, than what the "radiologist that read them said.
It just stands to reason, if someone has the "education" yes, that is a huge part of it. But, when you are looking at something as complicated as the inside of a joint, or any organ for that matter, if you don't have not only the knowledge but experience to totally "see" all of that entire ordeal, then all too often, I felt things were ""missed" because of whomever read them, didn't have enough experience or possibly training, to not miss something. Again, this is not just joint related but any type of scan, and so forth, things could be missed, and could cause serious issues if they are not caught in the beginning.
Same way with "blood work"... they are coming to find with many diseases, that all too often that "blood work" again that is supposed to be another "gold standard" for diagnosis, MAT NOT BE accurate. It could have been not processed quickly enough, or no refrigerated in time, or blood work has been known to get "mixed up" and maybe what was read had nothing to do with you. Many may not realize it, but on some of the very complicated blood work that they do, it may be actually "shipped" even out of state to be processed. Some of these tests either take extremely high dollar equipment, time, and the person to make sure it is done accurately. Again, there can be a mix up, something not processed in time, left out too long, or any number of things could "go wrong" before the actual test is ran, and the outcome that is "right", could be wrong.
I know I am NOT the ONLY PERSON who has been through this very issue. Even when I had the double hernia's. I had 2 doctors, a sonogram tech, a PA, ALL miss the HERNIA"S!! I knew they were there. I even told them exactly how to locate them, and why they would not locate them if I lie down, they would kind of "settle" down into my abdomen, and then they were difficult to locate. Yet, I have one huge lump on the left, and the one on the right had just began to show. I finally went to a regular SURGEON. He "found" them immediately and said I needed to have them both repaired before they got worse. The one on the left was already getting fairly large and the right one was headed that way.
Yet, even with a sonogram, 2 doctors, and one PA all doing an exam, none of them found them whatsoever. Yet, I was persistent, that I would NOT take "no" for an answer. I had at least ONE hernia, and I planned on getting someone to freaking listen!
Well the week after seeing the surgeon, I went in and had a double hernia repair.
So, went it with my elbow, my knees, both shoulders.... no matter how many scans, tests, reports, experts, and all that are involved WE, KNOW our BODIES better than anyone else. And if YOU FEEL SOMETHING IS NOT RIGHT, then do NOT TAKE NO FOR AN ANSWER! CONTINUE TO go onto other doctors until someone can give you an explanation that at the very least makes sense!!!
This day and age about "people" not being "educated" about medical problems, especially chronic ones, has far past us. The majority of this nation and around the globe, with the internet, and so many "reliable" web sites, doctors, specialists, documentation, everywhere can absolutely have a great deal of information about "possible" things that could be wrong, to others letting them know possibly how they dealt with a certain treatment, or surgery... and YES, there is also some BAD information out there too You must use you "brain and common sense" when it comes to weeding out the "good info" from the 'bad info"....
So, I totally understand doctors that get a bit annoyed with a patient that comes in and begins to tell them they know what is wrong with them, because they read it online, they heard it on day time TV, or several of their online friends have the same issue.
I get their point. But, when I go in, I don't begin to "rattle off" what I've found online, I usually go in with a "list".... and I ask questions, about certain things I may have read online. Yet, I try not to put my foot down and say "I know what it is because I found out about all of it, here, there or yonder. But ALWAYS TAKE A LIST!!! I can guarantee even though you may have a photographic mind, and like myself I used to be able to do all kinds of things and multitask. Yet, now days, as soon as I walk into the doctors office, I've without a list I would forget have of what I went to ask about. Thus that list helps to keep YOU focused, and also let them know what kinds of things maybe going on with you, that can help them to make a better "guess-ta-ment" or find the answers to whatever is going on with you and your health.
So, now I get to the article below. Which talks ALL about the VERY thing I've been fussing and griping about!!! A very SIMPLE test, that is certainly NOT INVASIVE, and it MUCH CHEAPER than many of these other tests, that give the doctors, a much better look at what might really be going on, especially when it comes to joints, inflammation and on forth.
So, PLEASE take a moment, and read this below!!! Then PLEASE share it with your own friends and those who have been through hell and back, sometimes for YEARS trying to get a right and accurate diagnosis!
I have already got it where I can print it and take it to my own doctors!!! I think they all need a "wake up" call.
http://rawarrior.com/professionals-call-for-ultrasound-use-in-rheumatoid-arthritis/
I have also said that I felt that any "scan", MRI, X-ray and so forth is only as "good" as the person it with experience and knowledge to read them. I can just tell, from all I've heard about and read, that often things are NOT found, or they are far worse, than what the "radiologist that read them said.
It just stands to reason, if someone has the "education" yes, that is a huge part of it. But, when you are looking at something as complicated as the inside of a joint, or any organ for that matter, if you don't have not only the knowledge but experience to totally "see" all of that entire ordeal, then all too often, I felt things were ""missed" because of whomever read them, didn't have enough experience or possibly training, to not miss something. Again, this is not just joint related but any type of scan, and so forth, things could be missed, and could cause serious issues if they are not caught in the beginning.
Same way with "blood work"... they are coming to find with many diseases, that all too often that "blood work" again that is supposed to be another "gold standard" for diagnosis, MAT NOT BE accurate. It could have been not processed quickly enough, or no refrigerated in time, or blood work has been known to get "mixed up" and maybe what was read had nothing to do with you. Many may not realize it, but on some of the very complicated blood work that they do, it may be actually "shipped" even out of state to be processed. Some of these tests either take extremely high dollar equipment, time, and the person to make sure it is done accurately. Again, there can be a mix up, something not processed in time, left out too long, or any number of things could "go wrong" before the actual test is ran, and the outcome that is "right", could be wrong.
I know I am NOT the ONLY PERSON who has been through this very issue. Even when I had the double hernia's. I had 2 doctors, a sonogram tech, a PA, ALL miss the HERNIA"S!! I knew they were there. I even told them exactly how to locate them, and why they would not locate them if I lie down, they would kind of "settle" down into my abdomen, and then they were difficult to locate. Yet, I have one huge lump on the left, and the one on the right had just began to show. I finally went to a regular SURGEON. He "found" them immediately and said I needed to have them both repaired before they got worse. The one on the left was already getting fairly large and the right one was headed that way.
Yet, even with a sonogram, 2 doctors, and one PA all doing an exam, none of them found them whatsoever. Yet, I was persistent, that I would NOT take "no" for an answer. I had at least ONE hernia, and I planned on getting someone to freaking listen!
Well the week after seeing the surgeon, I went in and had a double hernia repair.
So, went it with my elbow, my knees, both shoulders.... no matter how many scans, tests, reports, experts, and all that are involved WE, KNOW our BODIES better than anyone else. And if YOU FEEL SOMETHING IS NOT RIGHT, then do NOT TAKE NO FOR AN ANSWER! CONTINUE TO go onto other doctors until someone can give you an explanation that at the very least makes sense!!!
This day and age about "people" not being "educated" about medical problems, especially chronic ones, has far past us. The majority of this nation and around the globe, with the internet, and so many "reliable" web sites, doctors, specialists, documentation, everywhere can absolutely have a great deal of information about "possible" things that could be wrong, to others letting them know possibly how they dealt with a certain treatment, or surgery... and YES, there is also some BAD information out there too You must use you "brain and common sense" when it comes to weeding out the "good info" from the 'bad info"....
So, I totally understand doctors that get a bit annoyed with a patient that comes in and begins to tell them they know what is wrong with them, because they read it online, they heard it on day time TV, or several of their online friends have the same issue.
I get their point. But, when I go in, I don't begin to "rattle off" what I've found online, I usually go in with a "list".... and I ask questions, about certain things I may have read online. Yet, I try not to put my foot down and say "I know what it is because I found out about all of it, here, there or yonder. But ALWAYS TAKE A LIST!!! I can guarantee even though you may have a photographic mind, and like myself I used to be able to do all kinds of things and multitask. Yet, now days, as soon as I walk into the doctors office, I've without a list I would forget have of what I went to ask about. Thus that list helps to keep YOU focused, and also let them know what kinds of things maybe going on with you, that can help them to make a better "guess-ta-ment" or find the answers to whatever is going on with you and your health.
So, now I get to the article below. Which talks ALL about the VERY thing I've been fussing and griping about!!! A very SIMPLE test, that is certainly NOT INVASIVE, and it MUCH CHEAPER than many of these other tests, that give the doctors, a much better look at what might really be going on, especially when it comes to joints, inflammation and on forth.
So, PLEASE take a moment, and read this below!!! Then PLEASE share it with your own friends and those who have been through hell and back, sometimes for YEARS trying to get a right and accurate diagnosis!
I have already got it where I can print it and take it to my own doctors!!! I think they all need a "wake up" call.
http://rawarrior.com/professionals-call-for-ultrasound-use-in-rheumatoid-arthritis/
Monday, May 11, 2015
"WAAD 15" World Autoimmune Arthritis Day beginning Friday! Pick your team and Join in on the Fun!
World
Autoimmune Arthritis Day's 6 day virtual, online car race to collect
resources anraise MAJOR awareness for autoimmune arthritis diseases is
just 3 1/2 weeks away- please share
this poster, print it and give to your rheumy, use it to personally
invite friends, supporters, those in your community groups. The event
will happen HERE on Facebook and Twitter, along with some internet
navigation and sharing of awareness submissions on your own pages, so
plan to tune in!
More about how it works:
1. The Race Cars will represent each nonprofit from around the world that has officially signed up to participate. They will be the Nonprofit Race Teams and will compete against each other to "win WAAD15". Winning is based on who gets the most mileage points, but they need YOU to earn those for them.
2. On May 1st registration will open at www.worldautoimmunearthritisday.org. It's FREE to register, and while you of course can play along without registering, if you do register you can help your favorite nonprofits earn mileage points AND you can earn your own mileage points too. The top 5 registered participants will qualify to win prizes of their own! Register solo or get a group together and play as a team (more details will be posted on this soon). During registration, you can pick up to THREE of your favorite participating nonprofits to support and 'race for'; each of those nonprofits will earn 25 mileage points for your support.
3. On May 15th, at 12pm ET/USA, the race will begin RIGHT HERE on this page and our Twitter page @WAutoimmuneAD. All participating nonprofits with Facebook and Twitter will also post that the race has begun and provide instructions for those just tuning in.
4. Also on May 15th, time TBD, there will be a special post for memoriam laps, where we as a community remember those we have lost to these diseases. We will ask all people to share and add names of those you are remembering to the post.
5. Those registered to race in honor of nonprofits will receive, via email the day prior to the event, the official Global Race Map, which gives times of posts, where to go learn more about specific subjects, details about all the Detours (live webinar chats) and how to register to attend those, and detailed information about the live awareness activities-including when they will post and what they will be. All others can receive this information at the WAAD website after the event has begun.
6. Nonprofit Race Teams will also earn mileage points when you "like" or "share" the posts or tweets from their account or when you do awareness action items in their honor. Registered participants will also earn mileage points for posting/turning in awareness call to action items.
7. In addition to the live social media action, including sharing up to 6 resources from EACH of the over 30 nonprofits participating and several live Detours (webinars-subjects and hosts announced soon), there will also be a page where you can submit information about good practitioners (any specialty) in your area so that we can create a map that will be available year around on our website.
8. The race will end on May 21st at 12pm ET/USA when the checkered flag waves. The top 5 Nonprofit Race Teams and the top 5 Registered Participants (individual players) and top 3 Registered Participant Teams (signed up to play together) will be announced. Trophies/plaques will be sent to the winners, along with select prizes.
Nothing like this has ever been done but we can use this to push autoimmune arthritis into the forefront for 6 days. Are you with us???
1. The Race Cars will represent each nonprofit from around the world that has officially signed up to participate. They will be the Nonprofit Race Teams and will compete against each other to "win WAAD15". Winning is based on who gets the most mileage points, but they need YOU to earn those for them.
2. On May 1st registration will open at www.worldautoimmunearthritisday.org. It's FREE to register, and while you of course can play along without registering, if you do register you can help your favorite nonprofits earn mileage points AND you can earn your own mileage points too. The top 5 registered participants will qualify to win prizes of their own! Register solo or get a group together and play as a team (more details will be posted on this soon). During registration, you can pick up to THREE of your favorite participating nonprofits to support and 'race for'; each of those nonprofits will earn 25 mileage points for your support.
3. On May 15th, at 12pm ET/USA, the race will begin RIGHT HERE on this page and our Twitter page @WAutoimmuneAD. All participating nonprofits with Facebook and Twitter will also post that the race has begun and provide instructions for those just tuning in.
4. Also on May 15th, time TBD, there will be a special post for memoriam laps, where we as a community remember those we have lost to these diseases. We will ask all people to share and add names of those you are remembering to the post.
5. Those registered to race in honor of nonprofits will receive, via email the day prior to the event, the official Global Race Map, which gives times of posts, where to go learn more about specific subjects, details about all the Detours (live webinar chats) and how to register to attend those, and detailed information about the live awareness activities-including when they will post and what they will be. All others can receive this information at the WAAD website after the event has begun.
6. Nonprofit Race Teams will also earn mileage points when you "like" or "share" the posts or tweets from their account or when you do awareness action items in their honor. Registered participants will also earn mileage points for posting/turning in awareness call to action items.
7. In addition to the live social media action, including sharing up to 6 resources from EACH of the over 30 nonprofits participating and several live Detours (webinars-subjects and hosts announced soon), there will also be a page where you can submit information about good practitioners (any specialty) in your area so that we can create a map that will be available year around on our website.
8. The race will end on May 21st at 12pm ET/USA when the checkered flag waves. The top 5 Nonprofit Race Teams and the top 5 Registered Participants (individual players) and top 3 Registered Participant Teams (signed up to play together) will be announced. Trophies/plaques will be sent to the winners, along with select prizes.
Nothing like this has ever been done but we can use this to push autoimmune arthritis into the forefront for 6 days. Are you with us???
Wednesday, April 29, 2015
"I Wish I would have known? - WEGO Health Writer's Challenge - April 29th, 2015 Wednesday
Today's "prompt" for the next to the LAST day of the 30 Day WEGO Health Writer's Challenge, is "What I wished I had known in the beginning of my patient journey?" In other words, when you were first diagnosed, what do you wished you could have known, asked about, done, been more capable of understanding and so forth.
One thing that comes to mind is I wished I had known more about different types of "Rheumatologists". Our physicians (and I say this often) have almost "specialized" themselves out of the everyday field of medicine.
Rather than have as we did not that many years ago, a doctor, or physician that could see you for a flu bug, take out your appendix, deliver your kids, and give your kids their immunizations. My kids are now 35 and 30 years old. Yet, they both were delivered by our regular physician, that did all of those things. Even if one of mine had been Cesarian, he could have delivered him or her.
A medical doctor was a doctor of "all". Unless you had something that was really extremely unusual, they did not send you to a specialist to "set a broken arm". If you needed stitches, they did not send you to a plastic surgeon. When babies were born, you didn't have to go to an OB/GYN. Even some surgeries, were performed by your regular physician, unless it was some "off the wall" type of surgery.
I began to notice, right after my youngest was born, that doctors began to "not" do everything. If one of mine had an ear problem, off to the ENT doctor we went. If you needed surgery, let's say "female surgery", a hysterectomy, you saw your OB/GYN.
Then when it came to cancer, you were sent to any number of "cancer" specialists. It began as kind of an "umbrella" physician, an Oncologist. Then you began to see that branch out into "breast cancer" specialists, brain cancer specialists, intestinal cancer specialists, and the list continues on.
If you had a joint that needed surgery. It maybe that your regular "Orthopedic surgeon" may not do a "hip surgery" or "elbow surgery". You had to take yet another step into the "Orthopedic Surgeon" who specialized in that particular joint.
Now, it is almost insane. When I hear or see just home many "specialists" there are depending on what is wrong, it can make your head spin.
So, had I known that a "Rheumatologist" that worked with RA or Lupus patients, maybe totally different than one that was more into other autoimmune illnesses, I may have seen the proper doctor a great deal more quickly than I did. My very first "Rheumy" as we call them, was very up in age. In fact, he still gave "gold injections" and this was about 2007. So, at the time, seeing him may have been the right thing to do. He "named" off after extensive lab studies, and also seeing me several times, a "few" different autoimmune illnesses that I have. He began with MCTD ) "Mixed Connective Tissue Disorder", Raynauds, Sjogren's, possibly Lupus, but he was not "set" on RA. As I said he was really up in age, but honestly he was one smart "cookie".
Yet, due to his not wanting to be as "aggressive" with the latest medications such as the biologics, I make the decision to find another Rheumatologist that would be. Well, little did I know, until after seeing 5 or 6 different ones, finding someone that would "treat all of them", in an aggressive manner was not easy. Each one either specialized in Lupus, RA, and so forth. Plus they were not much into the latest of medications.
So, had I truly known the factors surrounding getting into the proper Rheumatologist, I may have been able to "prevent" some of my problems that were getting worse, due to not being treated.
I also wished I would have began researching the medications, treatments, and doing my own blogging sooner. Even though I had done a great deal of research, when it came to the Sjogren's especially, I didn't do enough, soon enough I fear. Had I really known just how quickly Sjogren's was completely destroying my teeth, I would have searched for either a dental specialist on Sjogren's, or made sure my Rheumatologist did know about Sjogren's and was more apt to let me know just how bad it could get so quickly. By the time I knew just how bad my Sjogren's was, it had already rotted my teeth from the inside out. It was not until after the first two broke off at the gum line, and I went in to get a full mouth digital X-ray, that my teeth were goners. There was no more patching to do. There was basically nothing left to try and "save". So, wishing Sjogren's had been one of these that a really got adamant about, maybe, just maybe, I would still have some of my teeth. Now, my dentist told me, that even if I had known around 2007 more about it, since there are really no "medications" designed to fight it off, and the two I took really didn't do much. It was already too late. Thus, I spent all of 2014, getting the entire mouth of rotten ones all pulled, getting dentures, then going onto having "mini implants" for the bottom dentures, so they will stay in place.
I also wished years before I got an "official" diagnosis with the autoimmune illnesses, I had really pursued the reasons why, at well before the age of 40 years old, my joints were in need of surgery. I had 3 knee surgeries, an elbow surgery, a shoulder surgery, and many of my joints injected from about the age of 21 to 40! The answer I got for the most part when I did try and ask "why". was always met with, "Well we don't really know, But I feel you probably have "arthritis" that has surfaced early due to "genetics". Well, it was true, my Dad and Mom both had arthritic issues fairly early in life. Yet, nothing like mine where anything I did hurt.
So, more research, a better understanding of doctors, and asking more questions are things I do wished I would have done differently, more, better, etc. when I think back on when all of my health problems first began.
One thing that comes to mind is I wished I had known more about different types of "Rheumatologists". Our physicians (and I say this often) have almost "specialized" themselves out of the everyday field of medicine.
Rather than have as we did not that many years ago, a doctor, or physician that could see you for a flu bug, take out your appendix, deliver your kids, and give your kids their immunizations. My kids are now 35 and 30 years old. Yet, they both were delivered by our regular physician, that did all of those things. Even if one of mine had been Cesarian, he could have delivered him or her.
A medical doctor was a doctor of "all". Unless you had something that was really extremely unusual, they did not send you to a specialist to "set a broken arm". If you needed stitches, they did not send you to a plastic surgeon. When babies were born, you didn't have to go to an OB/GYN. Even some surgeries, were performed by your regular physician, unless it was some "off the wall" type of surgery.
I began to notice, right after my youngest was born, that doctors began to "not" do everything. If one of mine had an ear problem, off to the ENT doctor we went. If you needed surgery, let's say "female surgery", a hysterectomy, you saw your OB/GYN.
Then when it came to cancer, you were sent to any number of "cancer" specialists. It began as kind of an "umbrella" physician, an Oncologist. Then you began to see that branch out into "breast cancer" specialists, brain cancer specialists, intestinal cancer specialists, and the list continues on.
If you had a joint that needed surgery. It maybe that your regular "Orthopedic surgeon" may not do a "hip surgery" or "elbow surgery". You had to take yet another step into the "Orthopedic Surgeon" who specialized in that particular joint.
Now, it is almost insane. When I hear or see just home many "specialists" there are depending on what is wrong, it can make your head spin.
So, had I known that a "Rheumatologist" that worked with RA or Lupus patients, maybe totally different than one that was more into other autoimmune illnesses, I may have seen the proper doctor a great deal more quickly than I did. My very first "Rheumy" as we call them, was very up in age. In fact, he still gave "gold injections" and this was about 2007. So, at the time, seeing him may have been the right thing to do. He "named" off after extensive lab studies, and also seeing me several times, a "few" different autoimmune illnesses that I have. He began with MCTD ) "Mixed Connective Tissue Disorder", Raynauds, Sjogren's, possibly Lupus, but he was not "set" on RA. As I said he was really up in age, but honestly he was one smart "cookie".
Yet, due to his not wanting to be as "aggressive" with the latest medications such as the biologics, I make the decision to find another Rheumatologist that would be. Well, little did I know, until after seeing 5 or 6 different ones, finding someone that would "treat all of them", in an aggressive manner was not easy. Each one either specialized in Lupus, RA, and so forth. Plus they were not much into the latest of medications.
So, had I truly known the factors surrounding getting into the proper Rheumatologist, I may have been able to "prevent" some of my problems that were getting worse, due to not being treated.
I also wished I would have began researching the medications, treatments, and doing my own blogging sooner. Even though I had done a great deal of research, when it came to the Sjogren's especially, I didn't do enough, soon enough I fear. Had I really known just how quickly Sjogren's was completely destroying my teeth, I would have searched for either a dental specialist on Sjogren's, or made sure my Rheumatologist did know about Sjogren's and was more apt to let me know just how bad it could get so quickly. By the time I knew just how bad my Sjogren's was, it had already rotted my teeth from the inside out. It was not until after the first two broke off at the gum line, and I went in to get a full mouth digital X-ray, that my teeth were goners. There was no more patching to do. There was basically nothing left to try and "save". So, wishing Sjogren's had been one of these that a really got adamant about, maybe, just maybe, I would still have some of my teeth. Now, my dentist told me, that even if I had known around 2007 more about it, since there are really no "medications" designed to fight it off, and the two I took really didn't do much. It was already too late. Thus, I spent all of 2014, getting the entire mouth of rotten ones all pulled, getting dentures, then going onto having "mini implants" for the bottom dentures, so they will stay in place.
I also wished years before I got an "official" diagnosis with the autoimmune illnesses, I had really pursued the reasons why, at well before the age of 40 years old, my joints were in need of surgery. I had 3 knee surgeries, an elbow surgery, a shoulder surgery, and many of my joints injected from about the age of 21 to 40! The answer I got for the most part when I did try and ask "why". was always met with, "Well we don't really know, But I feel you probably have "arthritis" that has surfaced early due to "genetics". Well, it was true, my Dad and Mom both had arthritic issues fairly early in life. Yet, nothing like mine where anything I did hurt.
So, more research, a better understanding of doctors, and asking more questions are things I do wished I would have done differently, more, better, etc. when I think back on when all of my health problems first began.
Wednesday, April 8, 2015
The Links to both of my Poetry and Prose Books on Amazon and also my Profile....
I have not really been "advertising" my two poetry and books and I should share these with you. It has been awhile since I mentioned them, and since I am probably about half way into completing my 3rd "autobiographical" look into my own trials and tribulations with autoimmune illness, chronic pain and my winding forever river of all things "Autoimmune" to me.
My 3rd book, is a view from my own self a patient of these horrid illnesses, and what I feel at times others view my as.... whether that be good, bad or indifferent, there are always different views from different people.
I tend to feel most "facebook" and online blogs etc, are where most are in total belief of what you are going through. I don't "feel" or see that as much on a daily level around my own little neck of the woods.
Several reasons, from some not "seeing" me when I am the most ill. Some because they just have not really seen me or been able to talk with me. People have busy lives and often even though you may run face to face with someone you know, does not mean there is time to really "explain" the complexities of any type of chronic illness, and most especially any type of "autoimmune illness(es), chronic pain" and how many medications, doctors, surgeries, and even the daily "grind" of every moment of your day evolves around being chronically ill..
I know MANY of us try our best to "put aside" the thought of a daily illness; yet if we really are honest with ourselves, and take a good inventory of our life day to day, we absolutely have to come to terms with "Yes, I am chronically ill", "Yes, it does in many ways rules my life", and although I may not want to come to terms with it, my life and those around me, can change from moment to moment.
I can be sitting here typing away right now, feeling sore, tired, achy and so on. Yet, in 10 minutes I might be so ill that I have to be taken to the Urgent Care Center, the ER, my own physician, or even hospitalized depending on the situation.
So, even though we try not to allow this "anxiety causing, horrific, abusive, sometimes very harmful" chronic autoimmune diseases, we still have to understand that they do in some ways rule over our lives. It would be almost impossible for them not to....
Anyway, so here are the links to my poetry books, and my "Author" about me page...
My 3rd book, is a view from my own self a patient of these horrid illnesses, and what I feel at times others view my as.... whether that be good, bad or indifferent, there are always different views from different people.
I tend to feel most "facebook" and online blogs etc, are where most are in total belief of what you are going through. I don't "feel" or see that as much on a daily level around my own little neck of the woods.
Several reasons, from some not "seeing" me when I am the most ill. Some because they just have not really seen me or been able to talk with me. People have busy lives and often even though you may run face to face with someone you know, does not mean there is time to really "explain" the complexities of any type of chronic illness, and most especially any type of "autoimmune illness(es), chronic pain" and how many medications, doctors, surgeries, and even the daily "grind" of every moment of your day evolves around being chronically ill..
I know MANY of us try our best to "put aside" the thought of a daily illness; yet if we really are honest with ourselves, and take a good inventory of our life day to day, we absolutely have to come to terms with "Yes, I am chronically ill", "Yes, it does in many ways rules my life", and although I may not want to come to terms with it, my life and those around me, can change from moment to moment.
I can be sitting here typing away right now, feeling sore, tired, achy and so on. Yet, in 10 minutes I might be so ill that I have to be taken to the Urgent Care Center, the ER, my own physician, or even hospitalized depending on the situation.
So, even though we try not to allow this "anxiety causing, horrific, abusive, sometimes very harmful" chronic autoimmune diseases, we still have to understand that they do in some ways rule over our lives. It would be almost impossible for them not to....
Anyway, so here are the links to my poetry books, and my "Author" about me page...
http://smile.amazon.com/Ramblings-Seasoned-Soul-Brush-Strokes/dp/1461061946/ref=asap_bc?ie=UTF8 |
http://smile.amazon.com/Ramblings-Seasoned-Soul-Brush-Strokes/dp/1461061946/ref=sr_1_1?ie=UTF8&qid=1428505245&sr=8-1&keywords=Rhia+Steele |
Wednesday, April 1, 2015
Clinical Trial possibly in your area, for a new "biosimilar" study!!!
Rheumatoid Arthritis Clinical Trial
The currently recruiting trial listed on CureClick for
rheumatoid arthritis is a clinical study for a biosimilar medication. We
have received several messages about this trial so we wanted to post
some additional information:
According to the FDA, “Biosimilars are a type of biological product that are licensed (approved) by FDA because they are highly similar to an already FDA-approved biological product, known as the biological reference product (reference product), and have been shown to have no clinically meaningful differences from the reference product.”
For this trial, one group will be given the currently approved and
available medication Rituxan® (rituximab) and the other will be on a
biosimilar version of rituxumab. Neither group will receive a placebo.
The goal of the trial is to see if the study drug is as safe and
effective in patients with rheumatoid arthritis and attempt to show it
has no clinically meaningful difference to the reference product
(Rituxan®).
MORE ABOUT THE STUDY FROM THE SPONSOR:
The purpose of this study is to compare the proposed biosimilar
study drug rituximab (GP2013) against a standard approved treatment
rituximab (Rituxan®) to see if the study drug is as safe and effective
in patients with rheumatoid arthritis.
- The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
- At least 174 people have already taken this drug in clinical trials
- All study related medications, analysis, hospital visits and procedures are free
Eligibility Criteria:
Participants must:
- be at least 18 years old
- have been diagnosed with rheumatoid arthritis for at least 6 months
- have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
- have received methotrexate for at least 4 months with 25 mg/week as the maximal dose
Participants must not:
- have significant liver disease, or congestive heart failure
- be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)
For more information about the study, please visit the link provided to you by your Ambassador.
Friday, March 6, 2015
FDA APPROVES 1ST "Biosimilar"! Great News!
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm436648.htm
This is just awesome news! Although this particular one is not related to Autoimmune illness, it is definitely a prosperous beginning to getting "biosimilars" into other types of illnesses, including RA, Sjogren's, Lupus and many of the other 100's of Autoimmune illnesses.
Here is another link that gives you a huge amount of information on Biosimilars. They are NOT a "generic" form of other "Name brand" medications. I am sure many of us are thinking this. But this website below DOES tell all about them, all of the huge non-profits like the AF, IFAA, AARDA, Lupus Foundation and many more that are supporting this effort.
This can mean many more of us that have these illnesses be able to have a more "affordable" type of medication in the near future.
So, take a few moments to look over the website, and also the link above is the news press release for "ZARXIO"....
http://www.biosimsafety.org/pbsamembers/
This is just awesome news! Although this particular one is not related to Autoimmune illness, it is definitely a prosperous beginning to getting "biosimilars" into other types of illnesses, including RA, Sjogren's, Lupus and many of the other 100's of Autoimmune illnesses.
Here is another link that gives you a huge amount of information on Biosimilars. They are NOT a "generic" form of other "Name brand" medications. I am sure many of us are thinking this. But this website below DOES tell all about them, all of the huge non-profits like the AF, IFAA, AARDA, Lupus Foundation and many more that are supporting this effort.
This can mean many more of us that have these illnesses be able to have a more "affordable" type of medication in the near future.
So, take a few moments to look over the website, and also the link above is the news press release for "ZARXIO"....
http://www.biosimsafety.org/pbsamembers/
Sunday, January 11, 2015
Finding a starting point or possibly a stopping point... OR maybe there is no point at all... All in a day of Autoimmune Illness
I've been able to allow words to just pour out of my soul on Facebook, and here in the past week or so. Yet, when I put myself back in "alignment" to begin working on my book, again I lose all of the hope I've had to begin...
It is not that I haven't began... Gosh I've probably written enough for 2 or 3 books. Between here, Facebook, and other places I post in detail all types of my own personal experiences with these hideous illnesses and maladies, to the some times irreparable dealings of some medications, and the problems they can cause... and moreover what is so very frightening I have came to the conclusion that there is something else physically going on with me, that the doctors, tests, lab work, and so forth have not been able to pinpoint yet.
As I've said now for awhile, either there is much more to my health issues that need to be looked at. I realize that many of the symptoms of any of the autoimmune illnesses can really be "overlapping" in nature. It is a defining moment in any life when a physician can give you a "real name" for a certain symptom, or chronic illness. At times the answers are truly vague at best... and the chances of getting a proper diagnosis at the very first trip you make.
So, now the question is, how do I go about trying to find if there is something else wrong, if so what doctor do I consult, and what will happen if there is another AI involved, like MS, MG (myasthenia gravis), and so on? More than likely, unless it is MS, they have came up with some great meds for it, BUT some of them are already things I am taking, or they are so new and so expensive, my insurance would probably turn the noses up and drowned in the rain, if I was prescribed one. You can believe, if it can happen, or will happen, or has happened ... then it has been with me.
I am seriously debating where I go this year on my blog... and if I want to continue to grow my audience then it is imperative that I work it and work well. I don't want to lose who I have and of course I want those that are already coming here to be excited about the new year and what I am going to say... and how I am going to say it.....
So, bear with me, as I take my own heart felt words, and pour them out in different ways. I am trying to experiment on my blog, so I can have a better understanding of writing my 3rd book.
More often that not, (and I just had an idea today, that I think I am actually very seriously considering) it is bad enough for the "same of stuff, day after day, to step into your path of consciousness. Those types of things tend to cause a huge road block for those of us who already suffer from massive brain fogs at times anyway. Then to try and work around all of it, and have something come out that maybe worth another persons time to read is a monumental task.... so right now, I only know to crawl up the side of this mountain and begin the book.
It is not that I haven't began... Gosh I've probably written enough for 2 or 3 books. Between here, Facebook, and other places I post in detail all types of my own personal experiences with these hideous illnesses and maladies, to the some times irreparable dealings of some medications, and the problems they can cause... and moreover what is so very frightening I have came to the conclusion that there is something else physically going on with me, that the doctors, tests, lab work, and so forth have not been able to pinpoint yet.
As I've said now for awhile, either there is much more to my health issues that need to be looked at. I realize that many of the symptoms of any of the autoimmune illnesses can really be "overlapping" in nature. It is a defining moment in any life when a physician can give you a "real name" for a certain symptom, or chronic illness. At times the answers are truly vague at best... and the chances of getting a proper diagnosis at the very first trip you make.
So, now the question is, how do I go about trying to find if there is something else wrong, if so what doctor do I consult, and what will happen if there is another AI involved, like MS, MG (myasthenia gravis), and so on? More than likely, unless it is MS, they have came up with some great meds for it, BUT some of them are already things I am taking, or they are so new and so expensive, my insurance would probably turn the noses up and drowned in the rain, if I was prescribed one. You can believe, if it can happen, or will happen, or has happened ... then it has been with me.
I am seriously debating where I go this year on my blog... and if I want to continue to grow my audience then it is imperative that I work it and work well. I don't want to lose who I have and of course I want those that are already coming here to be excited about the new year and what I am going to say... and how I am going to say it.....
So, bear with me, as I take my own heart felt words, and pour them out in different ways. I am trying to experiment on my blog, so I can have a better understanding of writing my 3rd book.
More often that not, (and I just had an idea today, that I think I am actually very seriously considering) it is bad enough for the "same of stuff, day after day, to step into your path of consciousness. Those types of things tend to cause a huge road block for those of us who already suffer from massive brain fogs at times anyway. Then to try and work around all of it, and have something come out that maybe worth another persons time to read is a monumental task.... so right now, I only know to crawl up the side of this mountain and begin the book.
Tuesday, December 30, 2014
Christmas Eve 2014...
Well, I am not sure what to say honestly when it comes to the reflection back on 2014, how I feel about the holiday season, and just how quickly it has seemed to "pounce" upon us.
From my "up" moments of being in Washington D.C. in March this year, to the tragic call from my daughter on the 26th of March telling me my husband had been in a very bad car accident with an 18 wheel tractor trailer on his way to the Airport in Dallas to fly out and be with myself and his Mom...
From there, this year has been filled with so many up's and down's.. either I am not well and are having flares, or the entire ordeal with my teeth and the Sjogren's, it seems we just never had a "break" of good luck any where we turned.
Of course I cannot say that entirely, because we are blessed that Jim survived the accident, and even though he is considered "paraplegic" he can walk with a cane. He still has many issues, including balance issues, but still he for the most part can get around with a cane, unless it is somewhere big or if we are going to do something in Wally World, which is a huge building to try and walk through with a cane.
But, between his plight and issues from the wreck, and then the Sjogren's literally eating my teeth away from the inside out... and the "forces" that are waxing and waning back and forth over the settlement of the accident, of course our finances are also worse than tight for sure.
We have been able to scrape by, but with some issues he had with a change in some main lines where the "servers" are that "host" the clients websites he has, we may have lost at least 2 clients, which were the two that usually were continually wanting updates and so on, thus those were the two that brought in a bit of a salary, although small, but yet better than nothing for sure. Now we are looking at the fact if we lose them, we really will be in a bind financially. They took away the medical benefits Jim was getting while he was in the hospital. Get this, they took MY OWN disability and counted it towards "income" for him... and then when we are probably 300 percent under the poverty line, they said my check was like 12.00 a MONTH over the limit thus they dropped his medical coverage. So now he also has no medical coverage at all. That means any doctor he sees has to come out of our pockets, and they are getting more empty by the day...
I also realize we certainly are not the only people in TX or in the nation that are fighting back hard times as far as finances. Many have been out of work so long, or have had to go through what savings they may have had to just live. So, I am not complaining for just my family, but for the many others out there with either the same or worse circumstances.
My "hopes" are for the coming 2015, to be even a better advocate, and good more activist and ambassador work through the charities and non-profits that I truly believe in. I know for many people, now days it is difficult to know where you might like to donate, and wonder if your money truly goes for the purpose intended.
My Mom is a very good example of someone that is not sure where to donate to. It gets to the point that she gets phone calls every day almost from one or more places asking for donations for "this, that or the other". With things in the world as they are now, even though we hate to think so, there are people out there, who take advantage of either elderly folks that may not understand what they are asking about, or they do give and then have their identity stolen, and so forth. I have had to warn my Mom time and time again to NOT give to anyone that is soliciting over the phone or knocking on her door. We even have a sign up on her door, plus I have put one on mine also that says NO soliciting, and that means don't ask about "lowering" utilities, or getting donations, or "insuring your water pipes" (now that is one I cannot fathom anyone falling for), but constantly somehow they have her name down and probably know she is up older and think that the can finagling her into giving out information that they can use for their own gain.
---------- ******** Beyond Christmas Eve*********-------------
Try December 30th 2014 - and beyond....
I figure if I want to get much more in BEFORE 2015 Rings in, I had better get these fingers to moving a bit faster. Probably more like pull my head out of my butt, and out of the 29,000 other places it is, and try to put down something that may make some sense out of my own life, and possibly others...
Not one of us is a "mind-reader", a "fortune teller", a "profit" (or I guess I am not sure about that one, I feel the Lord could actually send a profit down anytime he wanted to)... but when I talk about the word "profit" I am more meaning someone who tries to deliberately con someone out of money telling them they can "read their tea leaves" or follow the life lines on their hands... or read the Taro cards... and it is NOT that I don't believe that things such as that or people such as that can exist, it is more that I feel there are not near as many of these types of "world palm readers or fortune tellers" than they try and allow themselves to be. Each of us have our own unique ability to "feel" when something is right or wrong I think. Whether you truly tap into that ability is where the hairs split, as the saying goes. You can take that pathway and follow your gut and heart, and learn a whole lot about yourself and your fellow man and woman. Or you can choose to put on blinders, have tunnel vision, and only see what is directly in front of you. To me, that is not really a great way to live. Of course it is a frightening thing to "feel" something, or to "think" something about your life, or a loved ones life. But, it does not always have to be in the "blackest of black ink darkness".
You may find yourself, if you open up thinking about the "awesome" happenings in life... yours, family's, friends... or even strangers on the street. My family on my Mom's side have that type of "uncanny" ability to feel almost too much at times. My Mother really has it, yet she does not open up a great deal and talk about it. Yet, there are times something really strikes her in a dream, or as a feeling, and she does what I do, calls and checks on whomever it is she is overwhelmed with in the dream.
I've ran into more of a "night terror" wall, when it comes to if I wanted to call it a "dream world". I began trying to research the issue as to why almost every night of my life, I have a propensity to have not just night mares, but more what I call night terrors. Many nights, I wake my own self up. Either the night terror carries me to a place that I feel I am suffocating, or I am being "flogged" not exactly by a "strap" but more of a flog with words. It usually has to do with people in my past. Either people I went to school with, or have known from various jobs in my life. When I first finally got completely out of the abusive in every sense of the term, relationship with the "2nd" jackass I had been married to for far too long, I had them nightly. I almost could not lay my head on a pillow and try and sleep. For I knew in my dreams he would come after me in one way or the other. Usually through a window, with a knife, sometimes trying to run me over (which he did try in reality a couple of times)... just horrid night terrors that I thought would never go away.
When I decided while I still lived in Seattle, to venture out on my own, have my own apartment, take care of myself only... I thought the nights would be worse with terror. Yet, it seemed that I overcame them for the most part. There was something about living completely alone, and taking care of just me... that settled my unsettled soul. I could sleep like a baby, but just had hell working due to all of my health problems. Thus, as the health problems grew worse, even then the night terrors seemed to have died down a great deal.
As the tides of my life once again changed, moving fore and aft, to the South, then the North, from the East to the West... it seems my life has always been one that I must "Roll with the Changes"... Maybe that is one of the reasons I love that song so much... because all my life I've lived through a dichotomy ... where one part of me, seems to move one way, yet a portion of my life tends to be in another dimension. That may sound all too profound to even comprehend, but I've been called both a dichotomy and a conundrum .... which I used to really be pissed about. I took both as a huge insult, thinking that people saw me as some kind of "nut" who could not get their life straight enough to stick to the program I guess you could say.
I was very wrong in that thought. As the years have went by, I am truly both of those words and so much more. I can parallel a shooting star and head in a very straight and narrow path, or at times, I can be in all different paths, much like a comet's tail that tends to "flare" off in different directions, yet all at once. That portion of me reminds me of a huge firework exhibition, where some of them go straight up into the heavens, and then come down in a fountain of color. Sometimes red, green, pink, blue, purple... every color in the rainbow...
Now why my brain takes me off on several courses when I write, I guess is only something another writer, author, will understand. Many of us multitask in our daily lives. We deal with jobs, bills, kids, hobbies, houses, and so forth. Often juggling several different items at once during our daily jaunt through out what we call life. Yet, for a writer, it is sometimes what is "multitasking" in our brains. For myself, I may write a line or two, when something else hits me, just due to what I had put down the sentence before, thus I am off on another pathway through the minds of what many deem as insanity. Maybe to be a true writer, you must deal with the insanity before you can sanely write.
As I think about and write about the things I want to have in my next published book, I find myself getting lost in the circle of the ring of infinity. Where one thing may end, yet another begins at that particular jumping off spot. Such as I maybe penning something down about a particular autoimmune disease or symptom, yet that takes a turn, and around the next bend could be something "related" but sounds completely different than a "stuffy old autobiographical" book that has already been written, just out of a different mind set than another illness/author may write it. That does not mean that ANY book, about how one lives through these chronic illnesses that have captured our lives, bound us down inside of our homes, minds, and it seems the only contact we have with the real world maybe social media.
When I was listening to Laura Hilldebrand speak about her biography she wrote, about someone else and she also took me to a place in writing that I never quite thought about before. No matter if we are writing fiction, a novel, a movie script, music, or a biography, a "piece" of you flows through those words. You find a common ground between who or what you are writing about, and lace it between the person you are, and the outcome is a pure mixture of both... your view point about someone else, yet through the eyes of someone who has also gone through the hills, valleys, the darkness and light, the favorite inter-sanctioned places that whom you are writing about has been. You relate, you can empathize, your individual yet, duo of souls can dance together, in a seamless binding of what pain, power, gain, richness, poorness, and all that have motivated one soul to do well to another. If in your own heart you know "It is well with my Soul"... a Baptist hymn from a long time back, then you have meshed all of your own feelings, with someone else.
This may also mean about the way you write your own "auto-biography". As you pen those words, the ones that tug at your readers heart strings, gives them the emotions, the good, the bad, the unthinkable, the peaceful... all you have wrapped up in that book binding it is a gift that shall mean a hundred different things to a hundred different people that reads it.
I ran into a really "terrible" but in all honestly excellent way to explain what I mean. I made a post on social media, Facebook. My intentions were to absolutely honor the person that I was speaking of... for he had passed away extremely suddenly and was one of "us"... with Lupus, with RA, Sjogren's and he suffered from several vital organs that were all involved with the illnesses. So, I was posting something from one of the organizations that I am an Ambassador for (Platinum Ambassador now)... a portion of a newsletter that was sent to me, from the Foundation to pass on freely to social media, friends, emails, wherever I might like and to whom I might want to pass onto... I had just "pulled" the entire "newsletter" from my email and made it a graphic basically. There were no "clickable" links posted with it. Of course the Foundations name etc was on it... a portion of the article was commending not just myself but all of the North Central Texas Regions advocates, activists, Ambassadors etc. for getting several more of our Congress people on board. We felt this was an incredible feat since we had mid-term elections that "hit" us in losing several that were on our "Arthritis Caucus"... and were "helping to advocate" for us from the Federal Congress. Well, when I "cut it out" and copied it into a .jpeg it never dawned on me that on the very bottom of the newsletter it had a "donate now" button on it. I really did not pay it much mind or give thought that someone would misinterpret what I was trying to say.
I had been trying to say that our "fallen Advocate" would want us to push forward, to be proud of what we were and will accomplish. He would not have wanted us to wail and loose site of what our "jobs" were all about... which was advocating to win the fight against Autoimmune and Autoimmune Arthritic Illnesses. Thus to me, posting that newsletter, that actually came out the same day he passed away to me was "honoring" what his wishes would have been. Well, most of his "advocate" and volunteer work was done with one non-profit, charity. So, someone got the "impression" even though I carefully worded it that I DID NOT MEAN monetarily, but more in our advocacy work he would be sad if we didn't show what strides we made... thus having 5 new Congress People on board for him would have been as his saying "Onward and Upward"... but of course SOME PEOPLE have to READ things into what was posted and think that I meant for people to "give" donations in "His name" to this particular Foundation. Which happened to be the one he did most of his volunteer work for. Which that NEVER even entered my head... I meant in "heart and soul" type of work not anything that had to do with making a "donation" in his memory anywhere, unless that is something personally people want to do... then that is between them and their own hearts... not for myself nor ANYONE to decide. Well, it got back to me very quickly, of course.
And I "flew off the handle"... it hurt me so deeply that here I was trying to put something up "good" that this gentleman would have himself been so proud of in his memory, but just because I did not think to cut off the bottom that said "Donate Now"... and as I said it was NOT any type of link to click at all to donate a thing... but others got their panty hose in the crack about something that was supposed to be uplifting, kind and from the heart. NOT EVERYTHING in life has to be ABOUT CASH!!!! I think it hurt me that anyone would feel the "need" to ask me, much less even think that is what I meant. IF they would have READ MY POST, that went along with that graphic, they would have IMMEDIATELY known I was NOT ASKING FOR DONATIONS IN THIS MAN'S NAME!!! For no one... no charity, no non-profit, no where, no how, but someone had to "go there"...
Then once all was "explained" and said, done and as far as I was concerned over with... to CLARIFY things and not have any more WONDERING... I took down the graphic, left up the post with an explanation as to why the graphic was NOW by itself and took the "Donate now" off of it!!! Someone asked me why I "bowed down" to that crap....
It is not that I "bowed down" at all. What I did was STOP the stupid rumors coming from those mouths that did NOT have the courage to ask me. They went behind my back, told someone else, and then they had to come and ask me... Which was total nonsense. As I also put in the post, if for any reason, anyone has an issue with myself, my posts, or what my intentions are, ASK ME!! Don't beat around the bush, walk around the mountain, and get someone else involved in it. I could have answered the question and all would have been done... Now I am still somewhat perturbed... and I notice not many have said much on my Facebook page after that... well it could be the "holidays" and people are out and about .... busy... thus are not posting as much. But, I feel someone got the butt up over the dash board for nothing... and now they are trying to back track out of it.
Okay--------- to be continued
From my "up" moments of being in Washington D.C. in March this year, to the tragic call from my daughter on the 26th of March telling me my husband had been in a very bad car accident with an 18 wheel tractor trailer on his way to the Airport in Dallas to fly out and be with myself and his Mom...
From there, this year has been filled with so many up's and down's.. either I am not well and are having flares, or the entire ordeal with my teeth and the Sjogren's, it seems we just never had a "break" of good luck any where we turned.
Of course I cannot say that entirely, because we are blessed that Jim survived the accident, and even though he is considered "paraplegic" he can walk with a cane. He still has many issues, including balance issues, but still he for the most part can get around with a cane, unless it is somewhere big or if we are going to do something in Wally World, which is a huge building to try and walk through with a cane.
But, between his plight and issues from the wreck, and then the Sjogren's literally eating my teeth away from the inside out... and the "forces" that are waxing and waning back and forth over the settlement of the accident, of course our finances are also worse than tight for sure.
We have been able to scrape by, but with some issues he had with a change in some main lines where the "servers" are that "host" the clients websites he has, we may have lost at least 2 clients, which were the two that usually were continually wanting updates and so on, thus those were the two that brought in a bit of a salary, although small, but yet better than nothing for sure. Now we are looking at the fact if we lose them, we really will be in a bind financially. They took away the medical benefits Jim was getting while he was in the hospital. Get this, they took MY OWN disability and counted it towards "income" for him... and then when we are probably 300 percent under the poverty line, they said my check was like 12.00 a MONTH over the limit thus they dropped his medical coverage. So now he also has no medical coverage at all. That means any doctor he sees has to come out of our pockets, and they are getting more empty by the day...
I also realize we certainly are not the only people in TX or in the nation that are fighting back hard times as far as finances. Many have been out of work so long, or have had to go through what savings they may have had to just live. So, I am not complaining for just my family, but for the many others out there with either the same or worse circumstances.
My "hopes" are for the coming 2015, to be even a better advocate, and good more activist and ambassador work through the charities and non-profits that I truly believe in. I know for many people, now days it is difficult to know where you might like to donate, and wonder if your money truly goes for the purpose intended.
My Mom is a very good example of someone that is not sure where to donate to. It gets to the point that she gets phone calls every day almost from one or more places asking for donations for "this, that or the other". With things in the world as they are now, even though we hate to think so, there are people out there, who take advantage of either elderly folks that may not understand what they are asking about, or they do give and then have their identity stolen, and so forth. I have had to warn my Mom time and time again to NOT give to anyone that is soliciting over the phone or knocking on her door. We even have a sign up on her door, plus I have put one on mine also that says NO soliciting, and that means don't ask about "lowering" utilities, or getting donations, or "insuring your water pipes" (now that is one I cannot fathom anyone falling for), but constantly somehow they have her name down and probably know she is up older and think that the can finagling her into giving out information that they can use for their own gain.
---------- ******** Beyond Christmas Eve*********-------------
Try December 30th 2014 - and beyond....
I figure if I want to get much more in BEFORE 2015 Rings in, I had better get these fingers to moving a bit faster. Probably more like pull my head out of my butt, and out of the 29,000 other places it is, and try to put down something that may make some sense out of my own life, and possibly others...
Not one of us is a "mind-reader", a "fortune teller", a "profit" (or I guess I am not sure about that one, I feel the Lord could actually send a profit down anytime he wanted to)... but when I talk about the word "profit" I am more meaning someone who tries to deliberately con someone out of money telling them they can "read their tea leaves" or follow the life lines on their hands... or read the Taro cards... and it is NOT that I don't believe that things such as that or people such as that can exist, it is more that I feel there are not near as many of these types of "world palm readers or fortune tellers" than they try and allow themselves to be. Each of us have our own unique ability to "feel" when something is right or wrong I think. Whether you truly tap into that ability is where the hairs split, as the saying goes. You can take that pathway and follow your gut and heart, and learn a whole lot about yourself and your fellow man and woman. Or you can choose to put on blinders, have tunnel vision, and only see what is directly in front of you. To me, that is not really a great way to live. Of course it is a frightening thing to "feel" something, or to "think" something about your life, or a loved ones life. But, it does not always have to be in the "blackest of black ink darkness".
You may find yourself, if you open up thinking about the "awesome" happenings in life... yours, family's, friends... or even strangers on the street. My family on my Mom's side have that type of "uncanny" ability to feel almost too much at times. My Mother really has it, yet she does not open up a great deal and talk about it. Yet, there are times something really strikes her in a dream, or as a feeling, and she does what I do, calls and checks on whomever it is she is overwhelmed with in the dream.
I've ran into more of a "night terror" wall, when it comes to if I wanted to call it a "dream world". I began trying to research the issue as to why almost every night of my life, I have a propensity to have not just night mares, but more what I call night terrors. Many nights, I wake my own self up. Either the night terror carries me to a place that I feel I am suffocating, or I am being "flogged" not exactly by a "strap" but more of a flog with words. It usually has to do with people in my past. Either people I went to school with, or have known from various jobs in my life. When I first finally got completely out of the abusive in every sense of the term, relationship with the "2nd" jackass I had been married to for far too long, I had them nightly. I almost could not lay my head on a pillow and try and sleep. For I knew in my dreams he would come after me in one way or the other. Usually through a window, with a knife, sometimes trying to run me over (which he did try in reality a couple of times)... just horrid night terrors that I thought would never go away.
When I decided while I still lived in Seattle, to venture out on my own, have my own apartment, take care of myself only... I thought the nights would be worse with terror. Yet, it seemed that I overcame them for the most part. There was something about living completely alone, and taking care of just me... that settled my unsettled soul. I could sleep like a baby, but just had hell working due to all of my health problems. Thus, as the health problems grew worse, even then the night terrors seemed to have died down a great deal.
As the tides of my life once again changed, moving fore and aft, to the South, then the North, from the East to the West... it seems my life has always been one that I must "Roll with the Changes"... Maybe that is one of the reasons I love that song so much... because all my life I've lived through a dichotomy ... where one part of me, seems to move one way, yet a portion of my life tends to be in another dimension. That may sound all too profound to even comprehend, but I've been called both a dichotomy and a conundrum .... which I used to really be pissed about. I took both as a huge insult, thinking that people saw me as some kind of "nut" who could not get their life straight enough to stick to the program I guess you could say.
I was very wrong in that thought. As the years have went by, I am truly both of those words and so much more. I can parallel a shooting star and head in a very straight and narrow path, or at times, I can be in all different paths, much like a comet's tail that tends to "flare" off in different directions, yet all at once. That portion of me reminds me of a huge firework exhibition, where some of them go straight up into the heavens, and then come down in a fountain of color. Sometimes red, green, pink, blue, purple... every color in the rainbow...
Now why my brain takes me off on several courses when I write, I guess is only something another writer, author, will understand. Many of us multitask in our daily lives. We deal with jobs, bills, kids, hobbies, houses, and so forth. Often juggling several different items at once during our daily jaunt through out what we call life. Yet, for a writer, it is sometimes what is "multitasking" in our brains. For myself, I may write a line or two, when something else hits me, just due to what I had put down the sentence before, thus I am off on another pathway through the minds of what many deem as insanity. Maybe to be a true writer, you must deal with the insanity before you can sanely write.
As I think about and write about the things I want to have in my next published book, I find myself getting lost in the circle of the ring of infinity. Where one thing may end, yet another begins at that particular jumping off spot. Such as I maybe penning something down about a particular autoimmune disease or symptom, yet that takes a turn, and around the next bend could be something "related" but sounds completely different than a "stuffy old autobiographical" book that has already been written, just out of a different mind set than another illness/author may write it. That does not mean that ANY book, about how one lives through these chronic illnesses that have captured our lives, bound us down inside of our homes, minds, and it seems the only contact we have with the real world maybe social media.
When I was listening to Laura Hilldebrand speak about her biography she wrote, about someone else and she also took me to a place in writing that I never quite thought about before. No matter if we are writing fiction, a novel, a movie script, music, or a biography, a "piece" of you flows through those words. You find a common ground between who or what you are writing about, and lace it between the person you are, and the outcome is a pure mixture of both... your view point about someone else, yet through the eyes of someone who has also gone through the hills, valleys, the darkness and light, the favorite inter-sanctioned places that whom you are writing about has been. You relate, you can empathize, your individual yet, duo of souls can dance together, in a seamless binding of what pain, power, gain, richness, poorness, and all that have motivated one soul to do well to another. If in your own heart you know "It is well with my Soul"... a Baptist hymn from a long time back, then you have meshed all of your own feelings, with someone else.
This may also mean about the way you write your own "auto-biography". As you pen those words, the ones that tug at your readers heart strings, gives them the emotions, the good, the bad, the unthinkable, the peaceful... all you have wrapped up in that book binding it is a gift that shall mean a hundred different things to a hundred different people that reads it.
I ran into a really "terrible" but in all honestly excellent way to explain what I mean. I made a post on social media, Facebook. My intentions were to absolutely honor the person that I was speaking of... for he had passed away extremely suddenly and was one of "us"... with Lupus, with RA, Sjogren's and he suffered from several vital organs that were all involved with the illnesses. So, I was posting something from one of the organizations that I am an Ambassador for (Platinum Ambassador now)... a portion of a newsletter that was sent to me, from the Foundation to pass on freely to social media, friends, emails, wherever I might like and to whom I might want to pass onto... I had just "pulled" the entire "newsletter" from my email and made it a graphic basically. There were no "clickable" links posted with it. Of course the Foundations name etc was on it... a portion of the article was commending not just myself but all of the North Central Texas Regions advocates, activists, Ambassadors etc. for getting several more of our Congress people on board. We felt this was an incredible feat since we had mid-term elections that "hit" us in losing several that were on our "Arthritis Caucus"... and were "helping to advocate" for us from the Federal Congress. Well, when I "cut it out" and copied it into a .jpeg it never dawned on me that on the very bottom of the newsletter it had a "donate now" button on it. I really did not pay it much mind or give thought that someone would misinterpret what I was trying to say.
I had been trying to say that our "fallen Advocate" would want us to push forward, to be proud of what we were and will accomplish. He would not have wanted us to wail and loose site of what our "jobs" were all about... which was advocating to win the fight against Autoimmune and Autoimmune Arthritic Illnesses. Thus to me, posting that newsletter, that actually came out the same day he passed away to me was "honoring" what his wishes would have been. Well, most of his "advocate" and volunteer work was done with one non-profit, charity. So, someone got the "impression" even though I carefully worded it that I DID NOT MEAN monetarily, but more in our advocacy work he would be sad if we didn't show what strides we made... thus having 5 new Congress People on board for him would have been as his saying "Onward and Upward"... but of course SOME PEOPLE have to READ things into what was posted and think that I meant for people to "give" donations in "His name" to this particular Foundation. Which happened to be the one he did most of his volunteer work for. Which that NEVER even entered my head... I meant in "heart and soul" type of work not anything that had to do with making a "donation" in his memory anywhere, unless that is something personally people want to do... then that is between them and their own hearts... not for myself nor ANYONE to decide. Well, it got back to me very quickly, of course.
And I "flew off the handle"... it hurt me so deeply that here I was trying to put something up "good" that this gentleman would have himself been so proud of in his memory, but just because I did not think to cut off the bottom that said "Donate Now"... and as I said it was NOT any type of link to click at all to donate a thing... but others got their panty hose in the crack about something that was supposed to be uplifting, kind and from the heart. NOT EVERYTHING in life has to be ABOUT CASH!!!! I think it hurt me that anyone would feel the "need" to ask me, much less even think that is what I meant. IF they would have READ MY POST, that went along with that graphic, they would have IMMEDIATELY known I was NOT ASKING FOR DONATIONS IN THIS MAN'S NAME!!! For no one... no charity, no non-profit, no where, no how, but someone had to "go there"...
Then once all was "explained" and said, done and as far as I was concerned over with... to CLARIFY things and not have any more WONDERING... I took down the graphic, left up the post with an explanation as to why the graphic was NOW by itself and took the "Donate now" off of it!!! Someone asked me why I "bowed down" to that crap....
It is not that I "bowed down" at all. What I did was STOP the stupid rumors coming from those mouths that did NOT have the courage to ask me. They went behind my back, told someone else, and then they had to come and ask me... Which was total nonsense. As I also put in the post, if for any reason, anyone has an issue with myself, my posts, or what my intentions are, ASK ME!! Don't beat around the bush, walk around the mountain, and get someone else involved in it. I could have answered the question and all would have been done... Now I am still somewhat perturbed... and I notice not many have said much on my Facebook page after that... well it could be the "holidays" and people are out and about .... busy... thus are not posting as much. But, I feel someone got the butt up over the dash board for nothing... and now they are trying to back track out of it.
Okay--------- to be continued
Saturday, October 4, 2014
Rheumatoid Arthritis Study - Volunteers Needed - See if you Qualify from this post and the IFAA will get the donation!
Do
YOU qualify for this study? If you do, and are willing to give a
little time for a phone interview, you can raise $100 for IFAA!
All money raised from this study will be used towards wellness education and patient-centered/ patient-led research in 2015.
Do you qualify? Will you help? PLEASE SHARE via social media to find qualified participants.
Additional qualifying criteria is:
You must have been on the Cimzia, Humira or Remicade for less than one year before discontinuing.
You must have moderate or severe RA (as opposed to mild)
You cannot be a nurse, doctor, or research professional.
This will be one confidential and anonymous phone call with one moderator that will be scheduled at your convenience.
Is this you? If so, PLEASE EMAIL DOUG ASAP at dlowell@sampleczar.com!
All money raised from this study will be used towards wellness education and patient-centered/
Do you qualify? Will you help? PLEASE SHARE via social media to find qualified participants.
Additional qualifying criteria is:
You must have been on the Cimzia, Humira or Remicade for less than one year before discontinuing.
You must have moderate or severe RA (as opposed to mild)
You cannot be a nurse, doctor, or research professional.
This will be one confidential and anonymous phone call with one moderator that will be scheduled at your convenience.
Is this you? If so, PLEASE EMAIL DOUG ASAP at dlowell@sampleczar.com!
Thursday, September 4, 2014
Catching Up!!!!
There is a great deal for me to "catch up" on as far as the blog. Many of you also read Facebook, and I had posted a bit there, but I want to try and post here, then put a link to it on FB all the time.
I finally have my teeth completely gone, and a set of beautiful teeth, like I have wanted since I was 15 years old! They are "fake", BUT hey they are beautiful. So, always as they say, watch what you ask for. :)
I will be about 90 days out before the "mini implants" go in and the dentures are modified to go on those. Thus instead of the bottom one especially wanting to come out, they will stay in place, not rub sores on my mouth etc. Don't get me wrong I love them like this! I can finally smile!
Jim is slowly improving. We are having all kinds of heck getting him a couple of the doctors he needs that will take the "insurance" he is on. As far as the "wreck" it is in "litigation" I guess, well heading that way, with both of us giving depositions a couple of weeks from now... and then it is just depending on the other parties involved how long before any type of decision is brought to us... So, we shall wait and see... I DO KNOW that a couple of the parties involved have NOT cooperated AT ALL! To not one certified letter, to no visits, to nothing, and I am not sure they have even said they will come to their deposition times. So, again just a waiting game.
I have been so thrilled with all of the things going on in Arthritis.org! I have been taking all of the classes to be an "Ambassador", and the last one is next month! That is when we are told we are "accepted" or not, and also if there is anyone who qualified for the "Platinum Ambassador" title. So, between emailing my Congressmen, going to a Town Hall meeting yesterday in fact, and so many things I have done to help the cause.... and made some incredible "friends" and met some awesome people along the way.
I have a couple of other projects I am working on, trying to clear my schedule, so I can get back to what I know and love, besides advocacy... my blog and writing.
I will definitely try and get back tomorrow, post more, and give you more information... we have an exciting election coming up and much of this that is involved is for "We" the people, thus we need "The People" to get up, go down to where you cast a ballot and VOTE! Griping about it, making small or large talk about it won't fix it... it has to be YOU AND I... all of us getting Congress, Senate, House and the President and Chief of Staff, along with ALL of those that are in politics and are supposed to be representing us! So, get ready, because that is going to be my mantra for the rest of the next coming months!!! GET UP, GET to the VOTING place, CAST YOUR BALLOT - called VOTING! Believe me even though we may not think so, OUR VOTES DO MATTER!! WHETHER ONE OR MANY, THEY DO COUNT!!!
I finally have my teeth completely gone, and a set of beautiful teeth, like I have wanted since I was 15 years old! They are "fake", BUT hey they are beautiful. So, always as they say, watch what you ask for. :)
I will be about 90 days out before the "mini implants" go in and the dentures are modified to go on those. Thus instead of the bottom one especially wanting to come out, they will stay in place, not rub sores on my mouth etc. Don't get me wrong I love them like this! I can finally smile!
Jim is slowly improving. We are having all kinds of heck getting him a couple of the doctors he needs that will take the "insurance" he is on. As far as the "wreck" it is in "litigation" I guess, well heading that way, with both of us giving depositions a couple of weeks from now... and then it is just depending on the other parties involved how long before any type of decision is brought to us... So, we shall wait and see... I DO KNOW that a couple of the parties involved have NOT cooperated AT ALL! To not one certified letter, to no visits, to nothing, and I am not sure they have even said they will come to their deposition times. So, again just a waiting game.
I have been so thrilled with all of the things going on in Arthritis.org! I have been taking all of the classes to be an "Ambassador", and the last one is next month! That is when we are told we are "accepted" or not, and also if there is anyone who qualified for the "Platinum Ambassador" title. So, between emailing my Congressmen, going to a Town Hall meeting yesterday in fact, and so many things I have done to help the cause.... and made some incredible "friends" and met some awesome people along the way.
I have a couple of other projects I am working on, trying to clear my schedule, so I can get back to what I know and love, besides advocacy... my blog and writing.
I will definitely try and get back tomorrow, post more, and give you more information... we have an exciting election coming up and much of this that is involved is for "We" the people, thus we need "The People" to get up, go down to where you cast a ballot and VOTE! Griping about it, making small or large talk about it won't fix it... it has to be YOU AND I... all of us getting Congress, Senate, House and the President and Chief of Staff, along with ALL of those that are in politics and are supposed to be representing us! So, get ready, because that is going to be my mantra for the rest of the next coming months!!! GET UP, GET to the VOTING place, CAST YOUR BALLOT - called VOTING! Believe me even though we may not think so, OUR VOTES DO MATTER!! WHETHER ONE OR MANY, THEY DO COUNT!!!
Sunday, June 29, 2014
Doctors, Patients, Medical Staff.... We Must Stand Together, Hand In Hand... and NOT Allow this "ship" of Medical Needs Sink
In this day and time, when SO MANY of us NEED
doctors, medications and care, of the very best, what happens...POLITICS
happen! I realize the VA has been an extremely huge mess for many
years. I had watched my ex Father In Law go through that
entire "system" when he had a brain tumor, and it is insanity. But,
Medicare and ESPECIALLY the "Medicare Advantage" Plans are in the realm
oer ever WORSE than the VA's nightmare. Our physicians are falling out
and "opting out" of taking anymore patients by the dozens. In TX alone
we have the HIGHEST RATE of doctors stating they are opting out..
because they are NOT getting paid, OR like a doctor told me, it
literally took him 2 YEARS to receive payment for two surgical
procedures that were done, and it was not until it WENT in front of the
Cort of Appeals, the judge FINALLY paid him what he was owed. Of course
what about all the time he was waiting to get paid? Who is "soaking" up
these "unpaid" and underpaid bills the physicians wait literally for
years to get paid for???? So, when you begin to "hear" the real stories
of the doctors and medical staff that are there everyday working in the
trenches, with the ridiculous amount of red tape, tangled and mangled
"referral" for this doctor, and a "referral for this one, and another
one"... and it goes on and on. And where are we when all of this
"Waiting" is going on???? The patient suffers also.... somethings cannot
and should not be put off due to "money".... so it is a two way
street.... I don't blame the doctors for wanting to "jump ship" yet I
also cannot fathom having honestly to CALL 32 DOCTORS OFFICES as WE have
this week and NOT ONE will take the "State Funded Care" that Jim has to
be on now, until settlement comes in from the wreck. So, even though
this is a "state" by "state by state" situation, it is all the same!
Patients suffer, the medical professionals suffer, and those sitting in
the "big house" on the Hill are not "concerned" because they know THEY
are taken care of the rest of their lives. I know there are some "good
people" in Congress.
There are some that are fighting day and night, tooth and nail to CHANGE, UPGRADE, get patients taken care of in a manner they should be, but also get the hospitals, all of the medical staff, and doctors paid what they are truly "Owed" .... I am enclosing a part of the AMA Network Newsletter I get Monthly... down on the side there is one article talking about just this... but I feel you will find this horrifying when you begin to really take it all in.... where will "Medicare" being in 10 years, 20 years, 50 years... I doubt our kids will even see anything called "Medicare".... if we as a country continue to allow this "bad" business to go on... ALL of us shall suffer needlessly....
http://www.patientsactionnetwork.com/lets-work-together-to-fix-medicare-now/
There are some that are fighting day and night, tooth and nail to CHANGE, UPGRADE, get patients taken care of in a manner they should be, but also get the hospitals, all of the medical staff, and doctors paid what they are truly "Owed" .... I am enclosing a part of the AMA Network Newsletter I get Monthly... down on the side there is one article talking about just this... but I feel you will find this horrifying when you begin to really take it all in.... where will "Medicare" being in 10 years, 20 years, 50 years... I doubt our kids will even see anything called "Medicare".... if we as a country continue to allow this "bad" business to go on... ALL of us shall suffer needlessly....
http://www.patientsactionnetwork.com/lets-work-together-to-fix-medicare-now/
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
Monday, March 17, 2014
Asking for YOUR Thoughts and Prayers for This is SUCH A Critical Week-May I be Well Enough to be in DC to tell my Senators and Representative my Story
This is not just for myself, but it is for ALL OF US WITH THESE AUTOIMMUNE ARTHRITIC ILLNESSES AND OTHER CHRONIC AUTOIMMUNE ILLNESSES AND CHRONIC PAIN, FM, AND SO MY MORE... SO PLEASE KEEP ME AND LIFT ME UP IF YOU WILL!
Well Folks this is my LAST WEEK to be PREPARED to go to Washington DC NEXT MONDAY!!! Please keep me in your thoughts and prayers this week. In one week, I am supposed to be boarding a plane to fly to Washington DC to be in front of my Senators and Representative and tell them "my story" about my illnesses and how they have dramatically effected my life.... I have been so ill, it has been touch and go for me, we don't know if I will be well enough to go, and a few "kinks" worked out of being gone so long (my husband is supposed to fly in on Wed. when I am through and we are supposed to go see his Step-Mom that he had not seen in over 11 years and I have never met her)... so this week is my last week for everything to "fall" into place, and for me to be able to get on that plane... and be well enough, and everything 'worked" out so I can go... this is a critical point for ALL of us! This is sponsored by the Arthritis Foundation! So all I get to say and do effects ALL of us... with chronic illnesses... please say prayers that as I said I am well enough all here at home is worked out where I can get on that plane next Monday morningI appreciate all of the kindness, prayers, love and support I have received from all of you, and everyone in the other groups, that have been there to pray for me about my health, and all that life has sometimes pitched at me! You are all there to CHEER me on, when things go well, and there to support me when things are on the rocky cliffs of all of these autoimmune illnesses and the way that they have "altered" my life in so many ways, keeping me from being and doing all the things I want to do in life... I know this is one bunch of incredible people that are here for me!!!! Again this is SO CRITICAL and a dream of mine to be able to tell those on Capitol Hill how not just myself but ALL of us suffering from the pain, the horrible things we go through, how our quality of life is non-existent, thus me being there is like me standing i front of the White house for ALL of US!!! Please say an extra prayer this week, for I so need all of the extra support I can get.... Hugs to all.. Rhia
This will help you understand why this is so important, please take a moment to go to this link and see what I will be doing there in D.C. at this time next week!
Thursday, March 6, 2014
PART 2 - Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)
since this story was "ongoing" until even right at this moment, I've decided to bring the "rest" of it to you in a 2nd part)
Thus... this is a continuation of my prior post.... (PART 2!) -
This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore!
And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.
AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.
She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.
Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!
Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course, I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!
My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.
I also believe that after Mom's inquest while she was there, did some shaking and moving. I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!
Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.
Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.
So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.
I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning... and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.
ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!
I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.
I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.
I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!
There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....
Patients’ Access to Treatments Act (H.R. 460)
http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/
H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act
http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/
"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015
http://www.arthritis.org/advocacy/advocacy-priorities/dod-research
Thus... this is a continuation of my prior post.... (PART 2!) -
Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)...
Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?...
First of all I want to bring something to your attention, that my own Pain Physician brought to mine last Thursday. I felt after I had written the 1st part of this, surely that "ongoing saga" would end. Well, folks, I was mistaken, and here is the "rest of the story"....
I am not sure how much you have paid attention, but when was the last time on any "piece of medical documentation" (i.e. especially insurance and so forth) have you actually seen a doctor or physician called a "doctor or physician"? No sir, probably not in a long time. Now, the term "provider" has taken over the entire realm of medical professionals, our "Primary Care Providers"? What the hell is that? I consider "PCP" to mean Primary Care Physician. It was well pointed out to me, that in the 1970's, the terms like doctor, physician, nurse, and all of the "correct" titles of our medical specialists out there suddenly disappeared. Almost as if "David Copperfield" had came in and took them out of the language. Anyone can be a "service provider". Your plumber is a provider of service. The guy that takes your groceries out to your car, also is a "service provider". What about the mechanic that works on your car, "service provider". Well, she or he, DID provider YOU with a SERVICE! But, did they provide you with a medical item? Did they check you for an infection, take your blood pressure, write down all of your health concerns, and then turn those over to the next professional, your physician, that certainly should know more about your health and body, than the tires on your car. Good question. Same way with us. If you start looking at insurance paperwork, bills, anything medical, you will begin to notice, you are no longer a "patient". You are no longer someone who is ill, and is in need of a doctor. You are a "client", or some other manner of terminology that takes the "medical" portion out of it. Now why would this happen? Well, as my Pain Physician explained it, it was mainly due to "Medicare" and of course then the insurance companies that knew if they "took out" specific terminology for people such as physicians, nurses, patients, and so on... and put in generic terms such as "provider" or "client", then alas they can "charge a different price for things". They can take what should be just what it is, a physician's officer, and turn it into a "business", with a board of directors, and do you think those people sitting on that board of directors cares about all of their "doctors, nurses, medical professionals, and the patients?" Well, more than likely they are thinking about the "stock holders", or the "political power", or the "loop holes" that can NOW be created, because this is not a medical doctors professional office. It is a business, for clients.
I found a very interesting article about this. After my Pain doctor and I had a very long conversation about how Medicare, Insurance, and the entire realm of our Medical Professionals, doctors, nurses, labs, hospitals, clinics... are going straight down the tubes, while those "fat cats" sit up on Capitol Hill, laughing in our faces, and could care less if I have a Lupus and RA flare! So what? BUT, if I could for ONE DAY deliver HE or SHE with the severity of pain, stiffness, fatigue, the LACK of any quality of life, could not go to a meeting or to work, could not clean the house, or go shopping. If THEY could have each and every symptom many of us go through in just 24 HOURS, I wonder where they would be looking, crying, begging, and doing everything in their own power to have a physician DO SOMETHING. Plus they had to fight the pharmacy, the insurance company, the doctor due to his fear of giving medication due to all the red tape, how long do you think it would take to make some HUGE CHANGES on Capitol Hill, and in our Doctors offices, pharmacies, insurance companies, and I would bet that those "lobbyists" that make those big bucks for supporting charging 2,000.00 for a 5.00 bottle of medication or more... all of that would be put to "bed" quicker that any one of us could shake a stick at.
Boy, talk about having the "wool pulled over many of our eyes"! Let's face it, those of us "fighting" tooth and nail, almost dripping blood just trying to get SOMEONE, ANYONE to help are NOT stupid people. But, we have become so disenguaged, disenchanted, tired of the battle, lost hope in the true meaning of what this nation is SUPPOSED to stand for... become those that are giving up, because we do not feel we can win against Congress. Whether it is state, local, Federal... and all in between those with MONEY DO... and those with OUT MONEY do WITHOUT!
Here is the article link and if you do a search you also will be able to find information on this and why it took place:
I release this gentleman goes on to talk about "Concierge" type of Medical Care. In many ways, it would make total sense. For us that do NOT have insurance. For those of us who must pay cash. These physicians in many ways would make "more money" by charging the patients on a "cash basis" than what the EVER see from an insurance company!
I don't know about you, but when my "Explanation of Benefits" comes in from Humana, and in the first place a doctor has charged $450.00, for a 3 minute consultation, right there you know things are screwed up. But, take a look at what the insurance "really" paid that physician? He charges $450.00. The "insurance" gives a "negotiated" discount of $395.00. Let's say my "co-pay"was $40.00. Well, let's see. The insurance paid him a total of $15.00! In the first place, I PAID MORE in a "co-pay" than the INSURANCE DID on the actual bill. And guess what? My insurance paid a surmountable $15.00 for that visit.
Now I am not sure about you, but something sounds too fishy in the fish tank on that one. What about these bills (and my husband STILL argues it is NOT true, but it is)... you go into the hospital for a "routine outpatient surgery". The outpatient portion of the hospital bill goes to the insurance company for this and it is $15,000.00. Your co-pay is $200.00, of which they quickly make sure you pay BEFORE THE SURGERY! You get the "EOB" in a few weeks. Okay there is the charge for $15,000.00. You paid your $200.00 co-pay. The "insurance plan" negotiated with that outpatient clinic that they would pay $300.00 on that procedure. So, they got "billed" $15,000.00! They were told the patient owed $200.00, which you paid. And the insurance paid an entire amount of $300.00! So that means that bill in total was paid "correctly" at a total of the $500.00. What about the other $14,500.00? Well, that outpatient clinic has to "write off" that, because they were told that on the one procedure, it should only cost an average of $500.00. Thus the rest they "eat", basically! Now before you think WHAT??? No wonder they can't stay in business! NO ONE STOPPED to think that the procedure you had may NOT have cost no where near $15,000.00! Let's say on the average it costs $550.00 for that same thing to be done over the nation. SO, who charged whom TOO MUCH, and WHOM paid whom too little or too much? I worked in a hospital business office for 6 years, which was about 5 too many, as a patient "counselor". In other words, I was the one trying to get them to pay their bills. Well, I also did a great deal more than just that. I "refiled" claims, helped them get the insurance to pay, and so on. NOT any more! Boy, "if" they file it, you are lucky. And to get them to "refile" a claim, is nearly impossible! Plus, if I had TALKED to any of my patients the same way I have been spoken to by those in the medical business offices these days, I would have lost my job the first week I was there! I cannot begin to tell you that I've been called everything from an idiot, to a moron, to told I was stupid and should just pay the bill! And that was the "nice" people! Yes, but it was NOT so nice, the times I am correct. When I FINALLY get to the RIGHT person, and I AM CORRECT, they filed WRONG, and then called me an idiot when they told me my Mom owed over $500.00 for a surgery, that she only paid $200.00 for the MORNING of her surgery, I can tell you that ALL of the women in that "office" are NO LONGER employed there. It literally took me 6 months, over that really, hours and hours of phone calls to them, to the insurance company, and visits when I was basically told to get out of the office.... and THEN A LETTER TO THE PHYSICIAN! Guess what! Within 3 days, there was an extremely NICE gentleman that was HEAD over that outpatient facility, that begged, sweetly, and apologized 20 times for "their horrible mistakes". And how he told me that he "thanked me", because they had also BILLED OTHER PATIENTS, for MONEY THEY DID NOT OWE! MMMMM... wonder how many elderly people paid those bills... and no telling how much... and then hopefully got a refund!
If you cannot get anywhere, I can tell you a letter to the proper physician, usually works quite quickly. Especially when he is a portion of the Board of Directors, of the medical facility! But, more than once, even over a huge issue from when I was so ill in 2010, and spend way over 6 weeks in two hospitals. Again after months of fighting, I wrote my doctor a very explain and thorough letter, and within about 5 days, the entire situation was a mute point!
Alas comes to the NOW what I shall call the 2nd portion of a "Rhia's Week from Hell" with doctors, medical facilities, pharmacies, and the like.
I did the "stool samples" for the "PA" Monday, a week ago tomorrow. They were taken in, and I found out easily that they could have been processed within a couple of hours, no problem at the hospital. But, no the nurse from hades told my husband it would be 3 DAYS! Well, as he had told her, I would be dead by then. As he tried to explain again for the 10th time, We WERE very concerned about this HORRIBLE, unstoppable diarrhea I had. Again, not a budge... just another comment about "take her to the ER" if you don't like what we have to say!
So, three days went by, and at that time, I was NOT well yet at all. In fact the flares were worse, I was even more weak and fatigued, and all I knew to do was NOT take those antibiotics for sure, keep hydrated as much as possible, rest, and try and keep something bland in my stomach. Then I found the natural probiotic (IF we could find it in this small town) MIGHT help. I had read several people giving it rave reviews. Thus since I was NOT going to the ER, unless I got much worse, or if something else happened, we did what we could do ourselves. Well, it took about honestly 9 days, I believe, but first back to the days for the "test" results. No phone call, no email (they usually email me labs etc), nothing. SO, Friday, I called. This is truly the answer I got. I asked if the results were in. The girl on the phone said, well yes, they are. Then she said well, I will print them and lay them on the "PA's" desk. Well, I knew then there was NO WAY that chicken woman, nor her nurse would call me back. And so I was correct. About 7 hours later, I get a call from a VERY new. very young nurse there, and she said. Well, the PA said there was no bacteria in the lab work. And THAT WAS IT! NOT anything like, well how is she doing? Did she get any better? What about the Flares? NOT ONE DAMNED WORD!...NADA... ALL I heard was no bacteria, and click... that was it! Which, I already expected! But, the audacity of a "professional" that is supposed to be a PA, to my doctor who has been seeing me now since 2008, and HE is the ONE that usually IS EXTREMELY CAUTIOUS when it comes to me! In fact the "last time" I saw him, I had bronchitis. That was about 3 months ago or less. He told me then, YOU are very complex. You can go from a mild cause of bronchitis, to being in ICU on a ventilator within hours! I ALWAYS take special efforts to insure you get exactly the care you need due to the autoimmune issues you have. NOW, from that to his "PA" basically telling me to kiss her butt... within less than 3 months time! Wonder if they have PROBLEMS THERE????
*********** NOW. there is MORE to the STORY!!!!!!
After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning...
*********** NOW. there is MORE to the STORY!!!!!!
After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning...
This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore!
And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.
AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.
She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.
Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!
Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course, I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!
My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.
I also believe that after Mom's inquest while she was there, did some shaking and moving. I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!
Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.
Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.
So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.
I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning... and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.
ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!
I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.
I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.
I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!
There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....
Patients’ Access to Treatments Act (H.R. 460)
http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/
H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act
http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/
"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015
http://www.arthritis.org/advocacy/advocacy-priorities/dod-research
Part 3 to follow!
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