Okay, maybe this is just me, but, I was reading an article out of my AARP magazine and it was talking about women OVER the AGE of 50!, I am talking about one woman who is 60 years old... having KIDS!!! They are waiting until they have made a half century here on the planet, then go in, have IVF and not only have 1 child, but often have TWINS!!!! Now, I do know my Dad was the "baby" of the family. He had 9 older brothers and sisters, some of them half brothers and sisters, and his Mom had him fairly late in her life. I am thinking she may have been in her 50's. Back then, in the 1st place, my Dad's father, outlived two wives. The 3rd one also was a widow, and had lost her husband, and her and my Grandfather had been friends when they were very young. My Grandfather left Tennessee, was here in TX, and lost two wives. Somehow he went back to Tennessee for a visit or something, and met up with this lady, that he had known back in their teens and 20's... She also was a widow... and had lost her husband. So, when Dad was born, his Mom was already well into her 50's early I would say, and my Grandfather was over 60.
My Dad and a couple of his brothers came along after the both of them had other kids by other marriages, so they were spread apart somewhat as far as age.
But, in the days to read that a woman decides either she wants a kid, gets married, and then discover they want a baby!!!!!! At 55, 60 years old??? Are you kidding me???
I am continually telling my daughter who is now 30 herself that newborns are for the younger generation. Most people over 50 years old, first of all may not have the health needed, or could have severe complications during birth, for the baby or Mom, or both. There are just so many things to take into consideration... and then the nights of no sleep, or very little, babies with colic, and my nerves are already grated down to a very fine thin line, how the heck does a woman in their
50 years plus have enough of anything to make a little child have a great life...
I know there are exceptions to every rule. And there are some women that are up in age, that could conceivably be able to carry a child full term, no complications, and delivery a healthy baby. But, think about the years a woman has been through and all of the changes that our body's go through. From the time we are very young, hormones begin to evolve and we step from one phase of our lives into another one it seems with each decade. In our teen's we are almost too young for having children. Then in our 20's through about 32 or so, most likely is the time our own bodies can take the carrying of a baby, the delivery, and all of the changes we go through after delivery. It is not an easy task for any woman, no matter what age, plus no matter how well and easy the pregnancy goes. It still takes its toll on us, physically, mentally, emotionally, and energy wise. Then we live usually for at least the first 15 years of that child's life in an emotional "thunderstorm" of worry, resolve, hoping, praying, and trying to keep our kids safe, happy and healthy. Even after they are graduated from High School, and either make their way out to spread their wings and soar to A and M like some of my friends in high school were very fortunate that they did get grants, to help along with college tuition and so forth. Even when our kids leave home, marry, go to work, and have their own kids, it is just more like we are continuing to "walk them through" the years of their lives...
Thus the notion that I felt lousy for one reason or the other, and I went into a doctor at 45 or more years old, and he told me I was expecting... I would either faint, kick his butt, or kick my own... or tell him it had to be an Immaculate Conception HAHAHAHAHA.... as for myself, I had my tubes burned, severed. separated and all the "works" at 35 taken out to a more than partial hysterectomy. I did not want to take any chances on birth control failure when I had two kids, a boy and a girl... already fairly well grown, and headed out of their own.
The very last thing I ever wanted to even imagine was something go "south" and find out I was expecting...
Needless to say, I didn't know whether to laugh, cry, both, run screaming, or tell someone at AARP those women needed a good look at the funny farm... because they had lost their minds.... ;)
By the way, there is a new thing AARP... if you are a member, and enjoy the perks... I know one of mine is being hooked into Walgreens. I do get a great deal extra points at times, there are other things like discounts and so forth it provides. Now the latest thing they have on their site, is where you can do these small "trivial" games. Some of them are quite entertaining, plus I learned some things I didn't know. So, I appreciated that little factoid.
So, go to the main AARP website, and on the front page there will be a link to it. I have already about 6,000 or more points accumulated.. you can use them for discounts on trips, eating out, gift cards, flowers, shopping, motels, and so on.
I will warn you they are a it "addicting".... I started off with a couple of them, then found myself wanting to learn more, so I was playing more of those than I intended to....
Sunday, January 11, 2015
Friday, January 9, 2015
An Article About Chronic Pain - How Horrible weather can be on those with chronic pain, joint problems, and chronic illnesses that effect joints, bones, and more
Great Article about "chronic pain" especially joint pain and the
weather. I know for myself, that like yesterday, the very sudden huge
drop in temp - from about 50 to 18 degrees yesterday a.m. sent me into
one of the worst days of my life with pain. Ironically we were going to
my pain doctor, BUT he was seeing Jim yesterday, not me. I wanted so
badly to tell him that I could sit in the floor and scream, I hurt so
badly, but I knew the appointment was not "about me", thus he knew by
looking at me I was hurting... anyway, I had a headache that is one of
the worst I've ever had even from years back with my migraines, and
NOTHING would stop it. Believe me I tried everything I could think of.
Then my neck was so stiff I could literally NOT turn my head to see over
my shoulders while driving. I had to turn my whole body and use mirror.
Then my lower back hurt so much, I honestly thought I had kidney
stones. And my legs, ankles, feet, wrists, and my thumbs were so
terribly bad, I felt they were stiff, and just was not able to move them
without horrid pain. Now, the weather I KNOW "in my bones" (no pun
intended) has effected me for years and years. Even when I would have
migraines in my 20's and 30's the dramatic weather change could bring
them on almost every time. No one quite believed me, and then when I
began to see my Orthopedic Surgeon and he did all of the joint
replacement and surgeries on me, he totally agreed the weather would
absolutely effect pain, especially joint pain. Even the "phantom" knee
pain I get with my knees, that seems like I never even had them replaced
will come on with a vengeance when we experience storms and so forth.
So, let not anyone make you think you are crazy, when your pain is worse
in weather fluctuations. I think it is definitely so. Yesterday was
living proof for me. But, I am also hurting today, so far not quite as
badly as yesterday, but I can tell if i were to get up and really start
moving around I would be in a world of hurt... which sucks. Because I
have to get out today cold, bitter weather or not, and pick up scripts
both of us have had filled. The visit with my pain doctor for Jim went
well yesterday. Finally someone that will work with him. But of course
this is ALL coming out of our pockets, and everyone knows office visits
and medications are NOT cheap. I dread picking his up, and then this is
my first time having anything filled since I had the new insurance start
on the 1st. So, I hope the hell I don't have major issues with United
Health and my MAP... I will be so pissed if I start having hell getting
meds etc paid for. That is why I dreaded the change from Humana so much
and just put it off the last two years. But, more and more of my
physicians were dropping Humana, even my PCP, thus I decided to change
over to United Health... is it a "Secure Horizons" AARP endorsed
Medicare Advantage Plan. This one hopefully will not be too difficult,
because I am already established and have been for years with all of my
physicians. So, they assured me since I've been on the meds, and have
been seeing these doctors for years things should go fairly smoothly
with the transition. I will believe it, when I go today and try to pick
up the scripts.....
Talking About "Good RX" card for prescriptions....
http://www.goodrx.com/
I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....
Talking About "Good RX" card for prescriptions....
http://www.goodrx.com/
I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....
Wednesday, January 7, 2015
Anticipating the 2015 Arthritis Foundation Annual "Summit on the Hill"!
A dear friend of mine that I met in fact at last years Annual Summit on the Hill by the Arthritis Foundation had posted and asked me if I had filled out my "Travel Award". Well, yes I have, and as I told her, I had made "Platinum Ambassador" thus I believed it was my "obligation" to come to the Summit. Of course I would try to go whether I had made that or not. My entire world evolved around that Summit last year in March. I had in fact "won" a Travel Award, after putting my application in at the very last moment. I felt I had probably missed out since I was so late in even knowing about being able to go by getting a "Travel Award". So, by the time I filled out my paperwork and emailed it in, I feared I would be too late. But, within a few days, I received a "glowing email" that I had in fact been granted a Travel Award to D.C. for the Summit that took place and does take place each year around the 24th through about the 26th of March. I will never forget how much I got out of the Summit even being my very first time there, and just how much more I wanted to be a "better voice"... activist, advocate, blogger, writer, and then I wanted of course to be an Ambassador for the AF. I was not sure I would be able to get enough advocacy work in to make "Platinum" especially after my husbands accident, but I was SURE I would give it all I could in between everything that took place for those months following that fateful day in March. I've played it over and over in my mind. I have spoken about it numerous times online, and in person. I've written about it, blogged about it, and still to this day, at times it feels almost surreal.
It is almost impossible to believe all that happened at that time did. What is more impossible to believe is that the entire ordeal with the wreck that Jim went through, the months of hospital and rehab after that, and then months of outpatient rehab, the red tape that still goes on and on with the lawyer, and all of the fighting we have done to get him into physicians etc... it is truly a night mare. Maybe that is truly why I have night terrors almost every night of my life. There are not many nights that I don't wake up and I cannot breathe. I am "suffocating" in one way or the other in the night terror, but I am also in real life having massive problems breathing. Most nights I am up, trying half asleep, half awake and still almost in a dream like state trying to find my inhaler and the nasal spray, so I can once again breathe. It is crazy insane, but it is so very, very true.
I've done a good bit of research on night terrors, and of course the amount of stress from the accident in itself is enough to send me into a frenzy. When you add in my own health problems, and the fact that I have had to endure a great deal of my own pain once again, and the entire situation with my teeth, or no teeth now, the full set of dentures... of which the bottoms STILL will NOT stay in place, thus I am still not eating as I should, and by the end of the day, I just want to take the damned things out and throw them across the lawn into the street and say to hell with all of it. Of course the issue of also having "complications" which for me, what is new, yet they always seem to surprise me... of which involves my sinus cavity on the right side... and it is the maxillary sinus passage, which I have already been told, that I need to have repaired, I am sure has sometimes a great deal of reasoning behind my night mare like breathing problems. But, when you are facing another 7,000.00 PLUS out of pocket since you can't get a damned dental plan worth a flip, OR as this should be paid by regular Health Insurance, because a "chronic HEALTH Illness" is what caused me to lose my teeth in the first place should pay a portion of it. But, I have fought "tooth and nail" (no pun intended)... and I have just gotten way too weary to fight them anymore about paying any of it. Of course now, I changed insurance on January 1, thus you can believe that makes it entirely impossible to get either one of them to pay a dime ....
There is "after the fact of me already being out thousands" a "non-profit" that is for dental issues, mainly caused from autoimmune illnesses or cancer patients. But, there are way too many people needing the help versus the dentists and oral surgeons that will try and help out of generosity and not expecting either to have lots of people that will help.
Baylor dental college in Dallas also has certain things students do, while the professors and doctors watch, but you will much pay like 278.00 just to walk in the door. Then the 78.00 is a "fee" non-refundable, and the 200.00 is to apply towards care you are given, or if they can't help you then you get the 200.00 back. I know I went there to have my 4 wisdom teeth cut out all at once. In fact I was newly married, and my Dad drove me up there and home. I looked like a chipmunk with a full mouth of acorns for over a week. But, they charged a great deal less that having that done in a regular oral surgeons office.
As I leave behind so much "sadness" and "darkness" from 2014, I am trying my best to hold onto 2015 being a positive year, full of prosperity, not just financially, but more in the "domain" if you will, of getting things accomplished. I am trying to stay as far away as I can of thinking about all that took place in 2014, trying to look as each day a new one, that can mean much more as far as my writing, my advocacy, my activism, not only online, through my blog and writing, but I hope to be more involved in trying to find a way for my entire community of Ennis and Ellis County to become knowledgeable about the Autoimmune Illnesses, their symptoms, their lack of being able to be diagnosed, and to educate those that are surrounding me day in and day out right here, even as next door neighbors. I've come to see as of late, that there are MANY people that have some type of AI disease, FM, CFS/ME, Chronic Pain, right here that I could help, if given some assistance on how to go about starting an "awareness campaign" locally. We are SO LACKING in the understanding of Lupus, RA, Sjogren's (boy this one we REALLY NEED some understanding on), and MS... Raynaud's, Diabetes 2, autoimmune arthritis, autoimmune psoriatic arthritis... and the list goes on and on.
In fact, just about the time I was finally "diagnosed" with first MTCD & UCTD.. that turned into RA, Lupus, and the Sjogren's and Raynaud's was showing immediately when the MCTD first became the "name" of what was going on with me. There were two gentlemen (which is rare in the first place for men to have AI illnesses) both of them around the same age, both going to the church we were going to at that time, and both had Grave's Disease. What makes it even more unusual is men for the most part don't have "thyroid" issues either. Usually women have more of a propensity to have any or all of these illnesses and disorders.
So, right there being in a Church, with two guys, both almost the same age, both having Grave's disease was enough for me to absolutely know we had a much larger group of people with autoimmune illnesses. Both of then underwent treatment and both were "cured"... put into remission. My understanding is that once Grave's disease is in remission, that is permanent. Unlike many of the other AI illnesses, they "can" go into remission, but more than likely you will undergo swings of "active" disease symptoms, and then inactivity, yet there are no real "cures" for any of them.
That is why for me, I really would like to find a way, with the help of some of our community leaders, to get a group, or some type of monthly, weekly, however... crowd in a "face to face" type of environment to help them further their knowledge about their own, friends, or loved ones AI illnesses. I also would love to help people and physicians in "learning" how to talk about these diseases, along with how to talk about medications, side effects, long term "goals" or what to expect from having an AI or more than one, and what that will do in the years to come. Will more medication be needed, will hopefully there be more research, and possibly medications coming out? All of the questions that either patients themselves feel it is "wrong" to ask, or for the doctors who honestly are not as well versed on these illnesses, and how they address them to their patients. This includes all medical staff. From the person who answers the phone, to the nurses, lab techs, doctors, and other staff ALL of them need to be very well versed in these dreadful illnesses. For one thing, you maybe "well" and feel fit as a fiddle one moment, and within hours be severely ill and need hospitalization. Often times there is not a "warning" of impending AI and their flares. They can come on within moments, and you don't even know what hit you until it has. Unlike the flu, a cold, and other illnesses where you can certain "symptoms" like a forewarning of being ill, AI's can "attack" at any time they please.
So, when I call my PCP, and the girl that answers the phone is either not aware of my patient status OR she may not know about a "flare" of Lupus... she may insist that I "come in" and be seen. Well, sometimes that is a necessary... but at times, depending on my symptoms, my doctor may allow me to fore go the trip to the office for a visit, and just come in for a corticosteroid injection and a script for a high dose tapering down 14 days round of Prednisone.
Well, as I said, if the woman that answers that phone is "new", and so forth, I may have to make an uncalled for trip to sit in that office, to get the exact same thing I asked for. So, I've exposed myself to other illnesses, especially in the Winter. I've also wasted the doctors time, my time, and caused some other patient who truly may need to have been seen, to wait for a day. So, it is truly unjust for everyone. But, if whom answers the phone either knows me well enough, OR they understand the workings of come of these diseases, he or she may already be on top writing a note, taking down the information so they can talk to the doctor BEFORE making me come in for a totally uncalled for trip.
So, there are many involved in all types of health care that should be very "up" on autoimmune illnesses, diseases, symptoms, medications, and all that wrapping them up in neat newspaper, with a bow around it.
The very latest of challenges that many of us have had to hop over, or will trail and error finally get something nailed into the heads of the medical professionals, far and wide.
Interestingly enough, the UK tends to be "up" on the latest and greatest when it comes to being the leader in new medications, clinical trials, and finding out more than just about anyone around the globe. Often times I've noticed that Britain may have a "pilot" medication in the works. As soon as it is approved by the Brit's, you can bet the USA will be setting for us to jump up, and get to scrambling together researchers, grants and funding, clinical trials, and all on the band wago. What happens often times with a situation such as that. If the "CDC" of Britain signs off on a new medication, it means that the "medication" we put into the hands of researchers here that is basically the same, may not have to cost as much and those types of medications and treatments are sometimes able to be "fast tracked" into production. So, that is great for our economy, great for the Pharmaceutical companies, patients, doctors and so forth, because it gets here, and gets the door, helping to ultimately save lives...which ALL are great events when it comes to those with chronic autoimmune, incurable. painful, night mare diseases.
As 2015 "rolls in", I am hoping it allows me to try and "roll on through" with this blog, with the Ambassador (Platinum) work, and all of the other activist activities I so want to participate in.
Wish me luck as I am preparing to once again try to write the "Ultimate Book"... and get it published. I am also working on the more "fun" book, that will include many of the TX "sayings"... different words and how they tend to have different meanings in the South and in TX.. and many of the what some might call "odd" traditions we engage in here... in the Lone Star State!
It is almost impossible to believe all that happened at that time did. What is more impossible to believe is that the entire ordeal with the wreck that Jim went through, the months of hospital and rehab after that, and then months of outpatient rehab, the red tape that still goes on and on with the lawyer, and all of the fighting we have done to get him into physicians etc... it is truly a night mare. Maybe that is truly why I have night terrors almost every night of my life. There are not many nights that I don't wake up and I cannot breathe. I am "suffocating" in one way or the other in the night terror, but I am also in real life having massive problems breathing. Most nights I am up, trying half asleep, half awake and still almost in a dream like state trying to find my inhaler and the nasal spray, so I can once again breathe. It is crazy insane, but it is so very, very true.
I've done a good bit of research on night terrors, and of course the amount of stress from the accident in itself is enough to send me into a frenzy. When you add in my own health problems, and the fact that I have had to endure a great deal of my own pain once again, and the entire situation with my teeth, or no teeth now, the full set of dentures... of which the bottoms STILL will NOT stay in place, thus I am still not eating as I should, and by the end of the day, I just want to take the damned things out and throw them across the lawn into the street and say to hell with all of it. Of course the issue of also having "complications" which for me, what is new, yet they always seem to surprise me... of which involves my sinus cavity on the right side... and it is the maxillary sinus passage, which I have already been told, that I need to have repaired, I am sure has sometimes a great deal of reasoning behind my night mare like breathing problems. But, when you are facing another 7,000.00 PLUS out of pocket since you can't get a damned dental plan worth a flip, OR as this should be paid by regular Health Insurance, because a "chronic HEALTH Illness" is what caused me to lose my teeth in the first place should pay a portion of it. But, I have fought "tooth and nail" (no pun intended)... and I have just gotten way too weary to fight them anymore about paying any of it. Of course now, I changed insurance on January 1, thus you can believe that makes it entirely impossible to get either one of them to pay a dime ....
There is "after the fact of me already being out thousands" a "non-profit" that is for dental issues, mainly caused from autoimmune illnesses or cancer patients. But, there are way too many people needing the help versus the dentists and oral surgeons that will try and help out of generosity and not expecting either to have lots of people that will help.
Baylor dental college in Dallas also has certain things students do, while the professors and doctors watch, but you will much pay like 278.00 just to walk in the door. Then the 78.00 is a "fee" non-refundable, and the 200.00 is to apply towards care you are given, or if they can't help you then you get the 200.00 back. I know I went there to have my 4 wisdom teeth cut out all at once. In fact I was newly married, and my Dad drove me up there and home. I looked like a chipmunk with a full mouth of acorns for over a week. But, they charged a great deal less that having that done in a regular oral surgeons office.
As I leave behind so much "sadness" and "darkness" from 2014, I am trying my best to hold onto 2015 being a positive year, full of prosperity, not just financially, but more in the "domain" if you will, of getting things accomplished. I am trying to stay as far away as I can of thinking about all that took place in 2014, trying to look as each day a new one, that can mean much more as far as my writing, my advocacy, my activism, not only online, through my blog and writing, but I hope to be more involved in trying to find a way for my entire community of Ennis and Ellis County to become knowledgeable about the Autoimmune Illnesses, their symptoms, their lack of being able to be diagnosed, and to educate those that are surrounding me day in and day out right here, even as next door neighbors. I've come to see as of late, that there are MANY people that have some type of AI disease, FM, CFS/ME, Chronic Pain, right here that I could help, if given some assistance on how to go about starting an "awareness campaign" locally. We are SO LACKING in the understanding of Lupus, RA, Sjogren's (boy this one we REALLY NEED some understanding on), and MS... Raynaud's, Diabetes 2, autoimmune arthritis, autoimmune psoriatic arthritis... and the list goes on and on.
In fact, just about the time I was finally "diagnosed" with first MTCD & UCTD.. that turned into RA, Lupus, and the Sjogren's and Raynaud's was showing immediately when the MCTD first became the "name" of what was going on with me. There were two gentlemen (which is rare in the first place for men to have AI illnesses) both of them around the same age, both going to the church we were going to at that time, and both had Grave's Disease. What makes it even more unusual is men for the most part don't have "thyroid" issues either. Usually women have more of a propensity to have any or all of these illnesses and disorders.
So, right there being in a Church, with two guys, both almost the same age, both having Grave's disease was enough for me to absolutely know we had a much larger group of people with autoimmune illnesses. Both of then underwent treatment and both were "cured"... put into remission. My understanding is that once Grave's disease is in remission, that is permanent. Unlike many of the other AI illnesses, they "can" go into remission, but more than likely you will undergo swings of "active" disease symptoms, and then inactivity, yet there are no real "cures" for any of them.
That is why for me, I really would like to find a way, with the help of some of our community leaders, to get a group, or some type of monthly, weekly, however... crowd in a "face to face" type of environment to help them further their knowledge about their own, friends, or loved ones AI illnesses. I also would love to help people and physicians in "learning" how to talk about these diseases, along with how to talk about medications, side effects, long term "goals" or what to expect from having an AI or more than one, and what that will do in the years to come. Will more medication be needed, will hopefully there be more research, and possibly medications coming out? All of the questions that either patients themselves feel it is "wrong" to ask, or for the doctors who honestly are not as well versed on these illnesses, and how they address them to their patients. This includes all medical staff. From the person who answers the phone, to the nurses, lab techs, doctors, and other staff ALL of them need to be very well versed in these dreadful illnesses. For one thing, you maybe "well" and feel fit as a fiddle one moment, and within hours be severely ill and need hospitalization. Often times there is not a "warning" of impending AI and their flares. They can come on within moments, and you don't even know what hit you until it has. Unlike the flu, a cold, and other illnesses where you can certain "symptoms" like a forewarning of being ill, AI's can "attack" at any time they please.
So, when I call my PCP, and the girl that answers the phone is either not aware of my patient status OR she may not know about a "flare" of Lupus... she may insist that I "come in" and be seen. Well, sometimes that is a necessary... but at times, depending on my symptoms, my doctor may allow me to fore go the trip to the office for a visit, and just come in for a corticosteroid injection and a script for a high dose tapering down 14 days round of Prednisone.
Well, as I said, if the woman that answers that phone is "new", and so forth, I may have to make an uncalled for trip to sit in that office, to get the exact same thing I asked for. So, I've exposed myself to other illnesses, especially in the Winter. I've also wasted the doctors time, my time, and caused some other patient who truly may need to have been seen, to wait for a day. So, it is truly unjust for everyone. But, if whom answers the phone either knows me well enough, OR they understand the workings of come of these diseases, he or she may already be on top writing a note, taking down the information so they can talk to the doctor BEFORE making me come in for a totally uncalled for trip.
So, there are many involved in all types of health care that should be very "up" on autoimmune illnesses, diseases, symptoms, medications, and all that wrapping them up in neat newspaper, with a bow around it.
The very latest of challenges that many of us have had to hop over, or will trail and error finally get something nailed into the heads of the medical professionals, far and wide.
Interestingly enough, the UK tends to be "up" on the latest and greatest when it comes to being the leader in new medications, clinical trials, and finding out more than just about anyone around the globe. Often times I've noticed that Britain may have a "pilot" medication in the works. As soon as it is approved by the Brit's, you can bet the USA will be setting for us to jump up, and get to scrambling together researchers, grants and funding, clinical trials, and all on the band wago. What happens often times with a situation such as that. If the "CDC" of Britain signs off on a new medication, it means that the "medication" we put into the hands of researchers here that is basically the same, may not have to cost as much and those types of medications and treatments are sometimes able to be "fast tracked" into production. So, that is great for our economy, great for the Pharmaceutical companies, patients, doctors and so forth, because it gets here, and gets the door, helping to ultimately save lives...which ALL are great events when it comes to those with chronic autoimmune, incurable. painful, night mare diseases.
As 2015 "rolls in", I am hoping it allows me to try and "roll on through" with this blog, with the Ambassador (Platinum) work, and all of the other activist activities I so want to participate in.
Wish me luck as I am preparing to once again try to write the "Ultimate Book"... and get it published. I am also working on the more "fun" book, that will include many of the TX "sayings"... different words and how they tend to have different meanings in the South and in TX.. and many of the what some might call "odd" traditions we engage in here... in the Lone Star State!
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| Working on a back ground graphic for the top of my Facebook page. I want to include the URL back to here. Often people may not bookmark a page, or like even though I post a "link" back to my blog in the posts, it may get moved down several slots, and then people may not be aware of how to get back to my blog... |
Tuesday, January 6, 2015
As another year begins, Lupus, RA, pain, and trying to put those aside to be able to do something Outstanding!
An odd title, to say the least. But, everything about me, that I do, say, feel, see, is always "odd".
I've finally moved stuff around today, and got my stair climber exerciser in my Living Room. I put the stationary bike in the bedroom, because I desperately need an "entire" body workout starting today.
I've allowed myself to eat way too many things I should not, sit on my butt and find other things to occupy my time, and make excuses for not exercising. Thus now I "feel" the weight, see it, and I can tell that due to first of all getting lax on the walking, the weather being too cold, and lack and laziness of going through every day and every meal, mad and disappointed that I am honestly not able to eat as healthy as I usually do. The dentures are truly a huge hindrance depending on what you are trying to eat, thus as I said in a Facebook post, the very things that I loved and are healthy, I now cannot eat... like apples, fresh veggies... and the other things that are low in calories, high in nutrition, and don't let you get saggy and baggy...
Holidays are always difficult. There are so many goodies out there to temp everyone, between, cakes, cookies, candy, and the rest of the things... that temptation gets the best of us. Then, when you can't eat everything you are used to eating... (and you would be totally shocked at what some things are that I can or can't eat with these stupid things in)... then you really just get to the point of not caring what the heck it is... food you just see as food... and the rest of the time you are fighting to keep the stupid bottom denture in or trying to keep them from rubbing a sore spot in your mouth.... and so forth.
So, the entire thing I was SO HOPING would be out of my face by Jan 2015... and yet I am still facing the mess... and not anywhere near through, and certainly not anywhere near wanting to drop that kind of cash into a damned dentists or anyone's lap for sure...
Why does that type of stuff have to be so freaking blazing expensive???? I mean I realize they have an office, and employees and equipment, but hell I don't know many people who could REALLY AFFORD to have this mess done completely and have the "dime" to drop on it all at once... and I look up and it's almost 5:00 pm... where the hell did this day go to????
More to come tomorrow... Off and out for now...
I've finally moved stuff around today, and got my stair climber exerciser in my Living Room. I put the stationary bike in the bedroom, because I desperately need an "entire" body workout starting today.
I've allowed myself to eat way too many things I should not, sit on my butt and find other things to occupy my time, and make excuses for not exercising. Thus now I "feel" the weight, see it, and I can tell that due to first of all getting lax on the walking, the weather being too cold, and lack and laziness of going through every day and every meal, mad and disappointed that I am honestly not able to eat as healthy as I usually do. The dentures are truly a huge hindrance depending on what you are trying to eat, thus as I said in a Facebook post, the very things that I loved and are healthy, I now cannot eat... like apples, fresh veggies... and the other things that are low in calories, high in nutrition, and don't let you get saggy and baggy...
Holidays are always difficult. There are so many goodies out there to temp everyone, between, cakes, cookies, candy, and the rest of the things... that temptation gets the best of us. Then, when you can't eat everything you are used to eating... (and you would be totally shocked at what some things are that I can or can't eat with these stupid things in)... then you really just get to the point of not caring what the heck it is... food you just see as food... and the rest of the time you are fighting to keep the stupid bottom denture in or trying to keep them from rubbing a sore spot in your mouth.... and so forth.
So, the entire thing I was SO HOPING would be out of my face by Jan 2015... and yet I am still facing the mess... and not anywhere near through, and certainly not anywhere near wanting to drop that kind of cash into a damned dentists or anyone's lap for sure...
Why does that type of stuff have to be so freaking blazing expensive???? I mean I realize they have an office, and employees and equipment, but hell I don't know many people who could REALLY AFFORD to have this mess done completely and have the "dime" to drop on it all at once... and I look up and it's almost 5:00 pm... where the hell did this day go to????
More to come tomorrow... Off and out for now...
Sunday, January 4, 2015
How "Autoimmune and/or other Chronic Illnesses" seem to "slow you down to a snail's pace"
Lots going on here, there and yonder...mmm one of those "Texas" words "yonder"??? I have people especially ones in California ask me where "yonder" is??? Well, in TX, it usually means in the direction you are pointing! LOL!!! New word for today.... "lollop"... to "loll" around for short... or to be a bit in a lounging position and it can also mean to "bob" up and down.... I had heard this one and have used it so not really "new" to me, but it puts it in my head to use it more... I am in the process of finishing paying bills, cutting out coupons, and trying to NOT feel BAD!!! I woke up about 4 am with the worst headache, and my stomach was upset.... plus I just have no energy for some reason... and of all days... even though it is sunny outside, the wind chill has to be COLD as heck! Oh, another word I had tried my best to think of last night, and I could recall several words that kind of meant the "same" as what I was trying to come up with. Finally I got the Thesaurus out and looked up "neutered", "watered down" and so forth. Then the word I was looking for hit me... CENSORED... I think something due to me NOT censoring my writing there are times some may get offended by what I say. Now, don't get me wrong, I am not going to poignantly come out and write something meaning to piss someone off or upset them on purpose. But, if I begin censoring my writing, it is no longer what I want to say. It has made me wonder why I don't get as much traffic to my blog as I want. I realize that "links" back to other sites help immensely, to get your rankings up as far as SEO goes for sites and search engines. But, it is not even "strangers" that maybe "googling" a certain type of blog, or illness, and then they come across a link to my blog or facebook page etc. It is more about wanting ALL of those that spend time here at Facebook, Google Plus, and other places they may find out about me being a writer and published author that I am interested in. I seem to never get feedback. No matter if I write about my own health issues, about the other places I am a strong voice as far as advocacy, activist, and ambassador on, or if I am talking about my own latest catastrophic event of the day, I never get many replies back, or more comment is what I mean on the blog in itself. Does that mean people don't like it so father than say something tacky to me, they just don't say anything at all. Or is it I do hit the nail on the head for many, yet they just don't find it necessary to submit a comment on whatever subject matter I may pick for the moment. Well, unless something ridiculous happens this year of 2015 I plan on posting MORE blog posts, and working on both books daily, as well as learning a new word, getting back to my exercising since I have kind of flaked off the past several months. I do lots of running around since Jim is not able to go out, or clean, cook etc... so I get lots of "exercise" with all of that, but I need to be back on the stationary bike, out walking daily or trying once again to use my stair climber. Me and that thing have hell, but it is mainly because my feet want to slip and slide all over the place. That does make it difficult to exercise on when you are constantly having to reposition your feet.
Okay, I have done a couple of the "new" items on the agenda, and I stopped a moment to say hello to all. It is hard to believe the holidays are already past, the new year is here, and once again it is back to the "farm" to hitch up the mules, put the crops in order, get kids back to school, and put noses to the grind stone hoping for a better 2015 for many of us.... take it one step at a time, one breaths space at a time, one day, one week, one month... all at a time... slow down, stop. and try your best to "accomplish" something even if it a new word daily, that you can be proud of for 2015... read a book, write a novel, crochet, paint, learn to play an instrument, go back to college, or just spring clean your home and throw away everytthing that has NOT BEEN USED in a YEAR! I have figured out, if something is lingering around my home, whether in my closet as clothes, or dishes, or whatever might be "building up" and not being used... throw it in the recycle bin, take it to Goodwill, give it away, have a garage sale, but take your home to an entire new level... for me that does mean a great deal of getting rid of stuff that is just that stuff that sits around and is either already worn out, or I will never use, or was meant to do one thing or the other but I never got to it... and I am bound and determined, that I am GOING TO PAIN MY KITCHEN and have a new floor put in. IF it "hair lips" Harry as the old saying goes - actually it is "if it hair lips the Pope"... and I am not sure why, but that is how it has been said for eons... I already have colors picked out, and they have an already "pre-cut" cabinet top that is not all that expensive that should replace mine hopefully quite easily... so my hopes are that at the very least I get a "new updated" kitchen, floor to ceiling, and we get the outside of the house painted... of which I can do most of it myself, but I am just so slow, it will take me quite awhile by the time I sand down all of the old paint (Lord I bet there are 5 layers of old paint) on my cabinet fronts. Someone before us never scraped or sanded anything. and then when we got here, it was a hurry up, had our lease on our apartment ending, and did not want to pay another month's rent if possible... so there were somethings we had to kind of just "do half azzed" at the time, in order for us to move in that fine Winter of 2006, which we almost froze our butts off... Lord it was a cold winter that year. Jim was redoing our hardwood floors, and we were concerned about whether that coatings would dry on them fast enough for us... we really needed to scrape those cabinet fronts and doors, but time made us just get it painted and cleaned up so we could get moved in... wow, how the heck we made two huge moves, including coming to Amanda's wedding the Summer before we moved here, then Dad's funeral at the 3rd month of 2005, then we made the major move to San Pedro CA, and withing 3 months were on the road again for a long haul to Ennis....we got here on December 19th, 2005... Amanda had just had James on the 6th of December, and they all came up, well at that time it was Heather, James a new born, Amanda and Jimbo, then Jason and Danielle I believe both came over... I know Jason did... anyway down memory lane... due to me knowing what I could get accomplished then, compared to how long it takes me to accomplish anything now... is like a very long, long distance... Anyway, off to take meds, eat a bowl of cereal or something, and possibly get some writing done.... ;) ,
Okay, I have done a couple of the "new" items on the agenda, and I stopped a moment to say hello to all. It is hard to believe the holidays are already past, the new year is here, and once again it is back to the "farm" to hitch up the mules, put the crops in order, get kids back to school, and put noses to the grind stone hoping for a better 2015 for many of us.... take it one step at a time, one breaths space at a time, one day, one week, one month... all at a time... slow down, stop. and try your best to "accomplish" something even if it a new word daily, that you can be proud of for 2015... read a book, write a novel, crochet, paint, learn to play an instrument, go back to college, or just spring clean your home and throw away everytthing that has NOT BEEN USED in a YEAR! I have figured out, if something is lingering around my home, whether in my closet as clothes, or dishes, or whatever might be "building up" and not being used... throw it in the recycle bin, take it to Goodwill, give it away, have a garage sale, but take your home to an entire new level... for me that does mean a great deal of getting rid of stuff that is just that stuff that sits around and is either already worn out, or I will never use, or was meant to do one thing or the other but I never got to it... and I am bound and determined, that I am GOING TO PAIN MY KITCHEN and have a new floor put in. IF it "hair lips" Harry as the old saying goes - actually it is "if it hair lips the Pope"... and I am not sure why, but that is how it has been said for eons... I already have colors picked out, and they have an already "pre-cut" cabinet top that is not all that expensive that should replace mine hopefully quite easily... so my hopes are that at the very least I get a "new updated" kitchen, floor to ceiling, and we get the outside of the house painted... of which I can do most of it myself, but I am just so slow, it will take me quite awhile by the time I sand down all of the old paint (Lord I bet there are 5 layers of old paint) on my cabinet fronts. Someone before us never scraped or sanded anything. and then when we got here, it was a hurry up, had our lease on our apartment ending, and did not want to pay another month's rent if possible... so there were somethings we had to kind of just "do half azzed" at the time, in order for us to move in that fine Winter of 2006, which we almost froze our butts off... Lord it was a cold winter that year. Jim was redoing our hardwood floors, and we were concerned about whether that coatings would dry on them fast enough for us... we really needed to scrape those cabinet fronts and doors, but time made us just get it painted and cleaned up so we could get moved in... wow, how the heck we made two huge moves, including coming to Amanda's wedding the Summer before we moved here, then Dad's funeral at the 3rd month of 2005, then we made the major move to San Pedro CA, and withing 3 months were on the road again for a long haul to Ennis....we got here on December 19th, 2005... Amanda had just had James on the 6th of December, and they all came up, well at that time it was Heather, James a new born, Amanda and Jimbo, then Jason and Danielle I believe both came over... I know Jason did... anyway down memory lane... due to me knowing what I could get accomplished then, compared to how long it takes me to accomplish anything now... is like a very long, long distance... Anyway, off to take meds, eat a bowl of cereal or something, and possibly get some writing done.... ;) ,
Covers I am working on for my Two New Books
Wednesday, December 31, 2014
New Year, New Ideas and hopefully a New Me in many ways... or getting back to the Old Me one of the two...
I had basically stopped thinking about playing songs, drumming and so forth after Jim's accident. At that time we did not know if he would even be able to walk, but less play the guitar. But such as all of the other miraculous things that he continues to do as he heals... brought me to a place today... that I want us to be playing and singing, as well as writing our own music again. This song hit me as I came home from the market... I have heard it several times, and just absolutely loved everything about it... so I came in and Jim grabbed his guitar, and I grabbed a mic... and we practiced and then recorded it!!! For me I was desperately wanting to know if the dentures changed my voice as far as singing. I know at times speaking they have... and I hope for the better once they can "pin down" the bottom ones.. So below I will post the lyrics...
But I do also want to put up a picture of me I took today, along with a "Happy New Year" to everyone out there.
As we close the door on 2014, many of us close it on a year of health problems, uncertainty as far as our nation, and our world. We close it on doctors, medications and insurance companies, on pharmacies, all of the ones that have not worked to help us before the new dawn of a New Year. Many of you know the trials, tribulations, and the entire host of issues for myself and my family. Never starting on on January 2014 could you have convinced me that year would be filled with such as a entire realm of horrors, from my own illness, to Jim's nightmare of an accident, that has left us still grasping at which place we may turn as we wander through almost blindly the days and nights of what is still considered unknown. Yet, through the loss of his own use of his legs, the pain, the massive damage to his spinal cord and body, it still is healing as we know. How much more will that be after March 26th, 2015 we are not sure of... it maybe that he still has healing through years to come... or it could be that after a year has ticked by, what he has in healing will be what we must accept as the most there will ever be. Don't get me wrong, we are both extremely thankful and feel blessed he has the abilities he has now. Never did we expect he would leave the hospital walking on a cane, and using a wheelchair only when he would have to do a great deal of being up walking and on his feet. Which honestly, we have been able to avoid the wheelchair all but about maybe 3 or 4 times since he got home. Yet, the sad part of that is that he does NOT get out much. He does NOT go to the store, or get out and ride around with me during errands or even leave the house much at all. His essence of leaving the house, is usually standing on the front porch and the occasional stroll around our yard. So, for that it is saddening to see him struggle with having to almost be cooped up constantly in this tiny home of ours. Then of course we have endured the months and months and more months of my loss of all of my teeth to Sjogren's and all of the evil things it does when you least expect it. It has been a mixed journey for me... one of great disheartened days. knowing now I must find a way to adjust to dentures, which I will tell you right now is NOT an EASY FEAT!!!! IF I have learned anything from this past year, it is to NEVER ask for anything expecting to get it. YOU MAY GET IT, but NEVER in a way you imagined. I prayed all my life for "pretty teeth". Which I meant more like having the money to get braces and have my own teeth "fixed"... yet I now have "pretty teeth", but they are artificial in nature, and are hard as hell to get used to. I STILL cannot eat many things I love... from lots of fresh fruits, to some things you would never think would be difficult to eat, are almost impossible for me. I still learn something new everyday about how to maneuver around eating with the things in my mouth. Plus I still have "miles" honestly to go before they are completely finished. Health and money have kind of put a "damper" on me finishing them up. So, I am still incomplete when it comes to my new pretty teeth. Alas, as others think, and some don't think this way, but I try not to wallow around in self pity and the "why me" stuff. Yet, when it seems around every twist and turn of the day's beginning to the day's end something off the cuff happens, it makes it extremely difficult to think "positive" thoughts, and keep the light of faith and hope burning brightly...
So, I wish for everyone near and far, whether friend, neighbor, family member or stranger that 2015 brings in truth of good cheer. I wish for all to have a much healthier 2015, and may many of us go into a state of "remission" from these horrid illnesses that haunt us day and night. May we find our insurance and financial woes all the better, and may somehow, someway, new ground be broken for less cost in medications that we desperately need. May the "rich world" of corporations and big business, stop for a moment, put their greediness aside and see that we as human, and chronically ill humans need to be able to afford the often life saving medications we need. May we grow stronger in our advocacy and voices. May we find our family and friends bonds ever more full of honor and strength than ever in the past. May we find a peace in our minds and hearts that can surpass the highest comet's tail, and rain down upon us, the "reign" of a new dawn, and of a healing of souls all over and around our globe. My hopes are that men and women put down their weapons, be it guns, words, swords, and vengeful ways... may we life each other up and not strike one another down with the raw wounds that hate, greed, and jealousy all so often leave behind. My hopes are that I am able to pen the greatest book, I have ever pinned yet. May my body, soul, mind and spirit allow me to finish what I have began now for several years. Yet, always "life" somewhere gets in the way.... so my entire wish for my own personal days in 2015 are to be filled with "the voice", "the muse", the talent of writing what my heart and mind want to tell everyone... May we lift one another up tonight at midnight and wish all of this and much more for all in 2015... Rhia
Here are the Lyrics to the song that brought me so much inspiration today....
"Roller Coaster"
Thanks to vmh1205, Daisy Garcia, pamela, Caleb DeChand, Tyler for correcting these lyrics.
But I do also want to put up a picture of me I took today, along with a "Happy New Year" to everyone out there.
As we close the door on 2014, many of us close it on a year of health problems, uncertainty as far as our nation, and our world. We close it on doctors, medications and insurance companies, on pharmacies, all of the ones that have not worked to help us before the new dawn of a New Year. Many of you know the trials, tribulations, and the entire host of issues for myself and my family. Never starting on on January 2014 could you have convinced me that year would be filled with such as a entire realm of horrors, from my own illness, to Jim's nightmare of an accident, that has left us still grasping at which place we may turn as we wander through almost blindly the days and nights of what is still considered unknown. Yet, through the loss of his own use of his legs, the pain, the massive damage to his spinal cord and body, it still is healing as we know. How much more will that be after March 26th, 2015 we are not sure of... it maybe that he still has healing through years to come... or it could be that after a year has ticked by, what he has in healing will be what we must accept as the most there will ever be. Don't get me wrong, we are both extremely thankful and feel blessed he has the abilities he has now. Never did we expect he would leave the hospital walking on a cane, and using a wheelchair only when he would have to do a great deal of being up walking and on his feet. Which honestly, we have been able to avoid the wheelchair all but about maybe 3 or 4 times since he got home. Yet, the sad part of that is that he does NOT get out much. He does NOT go to the store, or get out and ride around with me during errands or even leave the house much at all. His essence of leaving the house, is usually standing on the front porch and the occasional stroll around our yard. So, for that it is saddening to see him struggle with having to almost be cooped up constantly in this tiny home of ours. Then of course we have endured the months and months and more months of my loss of all of my teeth to Sjogren's and all of the evil things it does when you least expect it. It has been a mixed journey for me... one of great disheartened days. knowing now I must find a way to adjust to dentures, which I will tell you right now is NOT an EASY FEAT!!!! IF I have learned anything from this past year, it is to NEVER ask for anything expecting to get it. YOU MAY GET IT, but NEVER in a way you imagined. I prayed all my life for "pretty teeth". Which I meant more like having the money to get braces and have my own teeth "fixed"... yet I now have "pretty teeth", but they are artificial in nature, and are hard as hell to get used to. I STILL cannot eat many things I love... from lots of fresh fruits, to some things you would never think would be difficult to eat, are almost impossible for me. I still learn something new everyday about how to maneuver around eating with the things in my mouth. Plus I still have "miles" honestly to go before they are completely finished. Health and money have kind of put a "damper" on me finishing them up. So, I am still incomplete when it comes to my new pretty teeth. Alas, as others think, and some don't think this way, but I try not to wallow around in self pity and the "why me" stuff. Yet, when it seems around every twist and turn of the day's beginning to the day's end something off the cuff happens, it makes it extremely difficult to think "positive" thoughts, and keep the light of faith and hope burning brightly...
So, I wish for everyone near and far, whether friend, neighbor, family member or stranger that 2015 brings in truth of good cheer. I wish for all to have a much healthier 2015, and may many of us go into a state of "remission" from these horrid illnesses that haunt us day and night. May we find our insurance and financial woes all the better, and may somehow, someway, new ground be broken for less cost in medications that we desperately need. May the "rich world" of corporations and big business, stop for a moment, put their greediness aside and see that we as human, and chronically ill humans need to be able to afford the often life saving medications we need. May we grow stronger in our advocacy and voices. May we find our family and friends bonds ever more full of honor and strength than ever in the past. May we find a peace in our minds and hearts that can surpass the highest comet's tail, and rain down upon us, the "reign" of a new dawn, and of a healing of souls all over and around our globe. My hopes are that men and women put down their weapons, be it guns, words, swords, and vengeful ways... may we life each other up and not strike one another down with the raw wounds that hate, greed, and jealousy all so often leave behind. My hopes are that I am able to pen the greatest book, I have ever pinned yet. May my body, soul, mind and spirit allow me to finish what I have began now for several years. Yet, always "life" somewhere gets in the way.... so my entire wish for my own personal days in 2015 are to be filled with "the voice", "the muse", the talent of writing what my heart and mind want to tell everyone... May we lift one another up tonight at midnight and wish all of this and much more for all in 2015... Rhia
Here are the Lyrics to the song that brought me so much inspiration today....
LUKE BRYAN LYRICS
She had a cross around her neck
And a flower in her hand
That I picked from the side of Thomas Drive
On our way to the sand
We found an old wooden chair
Still warm from the sun
Pushed it back, gave me a kiss
With Bacardi on her lips
And I was done
[Chorus:]
And we spent that week wide open
Upside down beside the ocean
I didn't know where it was goin'
Just tryin' to keep my heart on the tracks
I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
Sunday came and it was over
Now she's got me twisted
Like an old beach roller coaster
The rest of those days
Turned into long crazy nights
When the music got loud
We'd sneak away from the crowd
Under the boardwalk lights
And with all the things we said
What I just can't get past
Is the way we let it end
Now I'm wonderin' where she is
Knowin' I can't get that goodbye back
[Chorus]
She's like a song playin' over and over
In my mind, where I still hold her
I had the chance and I should've told her
When we spent that week wide open
Upside down beside the ocean
I should've known where it was goin'
Still tryin' to keep my heart on the tracks
And I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
When Sunday came and it was over
Now she's got me twisted,
Yeah, I'm still twisted
Like that old beach roller coaster
Like that old beach roller coaster
And a flower in her hand
That I picked from the side of Thomas Drive
On our way to the sand
We found an old wooden chair
Still warm from the sun
Pushed it back, gave me a kiss
With Bacardi on her lips
And I was done
[Chorus:]
And we spent that week wide open
Upside down beside the ocean
I didn't know where it was goin'
Just tryin' to keep my heart on the tracks
I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
Sunday came and it was over
Now she's got me twisted
Like an old beach roller coaster
The rest of those days
Turned into long crazy nights
When the music got loud
We'd sneak away from the crowd
Under the boardwalk lights
And with all the things we said
What I just can't get past
Is the way we let it end
Now I'm wonderin' where she is
Knowin' I can't get that goodbye back
[Chorus]
She's like a song playin' over and over
In my mind, where I still hold her
I had the chance and I should've told her
When we spent that week wide open
Upside down beside the ocean
I should've known where it was goin'
Still tryin' to keep my heart on the tracks
And I should've known that kind of feelin'
Would last longer than that week did
Blown away and barely breathin'
When Sunday came and it was over
Now she's got me twisted,
Yeah, I'm still twisted
Like that old beach roller coaster
Like that old beach roller coaster
Thanks to vmh1205, Daisy Garcia, pamela, Caleb DeChand, Tyler for correcting these lyrics.
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
Tuesday, December 23, 2014
"Onward and Upward" A 2nd Very Grave and Close Loss of A Dear Friend, Advocate, and a Patient of RA, Lupus, and more...
I almost could not believe my eyes as I read on Facebook last evening, that one of our "own" - in fact a 2nd one this year we lost to these Autoimmune Illnesses. Anthony Hileson was only 62 years old. He had a terrible time with RA, Lupus, and other AI illnesses, along with the brain fog and more than that the extreme pain that comes all too often with these horrid diseases.
After our loss earlier this year of Ali, who was in her early 20's... now we are mourning yet another "victim" from these diseases.
I got to know Anthony through Facebook, and became close to him due to him being in the Dallas area, and he in fact was the one that told me about my now incredible Rheumatologist. He "referred" me to Dr. Q. as well always have called him online, and Anthony was also looking into getting a pain pump shortly after the holidays, which he had talked with me in length about since he knew I had mine.
We have met him once, in fact when I was seeing my Rheumatologist. Anthony was in the hospital at the time right there by the doctors office. So, Jim and I met him for a brief few minutes. We had also had several conversations on the phone.
He wanted so much to put in all he could to help the IFAA, and everything that was related to helping be an advocate and activist and volunteer again the Autoimmune Illnesses that have now taken his life.
He was a very spiritual gentleman, kind, and wished everyone well. Even when he was very ill, he always tried his best to be online to do his part.
"Onward and Upward" was a phrase "coined" by him. So, it is very appropriate that this graphic below express his deep love of advocacy and people. May you rest in peace, without any more pain, sorrow and loneliness Anthony. Your giving of self without any selfishness at all, just to be there for others will always be remembered.....
and if you care to see more about Anthony, you can find his Facebook page at:
After our loss earlier this year of Ali, who was in her early 20's... now we are mourning yet another "victim" from these diseases.
I got to know Anthony through Facebook, and became close to him due to him being in the Dallas area, and he in fact was the one that told me about my now incredible Rheumatologist. He "referred" me to Dr. Q. as well always have called him online, and Anthony was also looking into getting a pain pump shortly after the holidays, which he had talked with me in length about since he knew I had mine.
We have met him once, in fact when I was seeing my Rheumatologist. Anthony was in the hospital at the time right there by the doctors office. So, Jim and I met him for a brief few minutes. We had also had several conversations on the phone.
He wanted so much to put in all he could to help the IFAA, and everything that was related to helping be an advocate and activist and volunteer again the Autoimmune Illnesses that have now taken his life.
He was a very spiritual gentleman, kind, and wished everyone well. Even when he was very ill, he always tried his best to be online to do his part.
"Onward and Upward" was a phrase "coined" by him. So, it is very appropriate that this graphic below express his deep love of advocacy and people. May you rest in peace, without any more pain, sorrow and loneliness Anthony. Your giving of self without any selfishness at all, just to be there for others will always be remembered.....
The Arthritis Foundation and Our "Victory" from the 2014 Summit!
I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!
It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!
Saturday, December 20, 2014
Wishing Your and Yours A Very Wonderful Holiday and A Happy New Year!
Before time flies by and I don't get here to post as I want to... I am doing this a few days early, so the "brain drain and brain fog" does not take me away from doing this.
I am writing a long piece about the holidays, the things I miss so much, that I can't do anymore because of the Autoimmune Illnesses, and just how heartbreaking the diseases are for so many. They take the quality of Life away that you had, and turn it upside down. They often take away many things you used to love to do, even small things we used to take for granted now, are sometimes impossible to achieve.
I shall post it when I am finished but for now, I want to ...
WISH YOU AND YOURS AN INCREDIBLE CHRISTMAS, A 2015 THAT SHALL BRING PEACE, HARMONY, GOOD HEALTH, PROSPERITY AND MANY MORE OF THE WONDERFUL THINGS IN LIFE YOUR WAY... and I also wish our WORLD would FIND PEACE, A WAY TO GET ALONG WITH EVERYONE, COUNTRY TO COUNTRY, NATION TO NATION, NEIGHBORHOOD TO NEIGHBORHOOD... FOR EVEN IN OUR OWN TOWNS WE SEE THEM DIVIDED AND IT SHOULD NOT BE THAT WAY... So the saying from the Word of the Lord...
I am writing a long piece about the holidays, the things I miss so much, that I can't do anymore because of the Autoimmune Illnesses, and just how heartbreaking the diseases are for so many. They take the quality of Life away that you had, and turn it upside down. They often take away many things you used to love to do, even small things we used to take for granted now, are sometimes impossible to achieve.
I shall post it when I am finished but for now, I want to ...
WISH YOU AND YOURS AN INCREDIBLE CHRISTMAS, A 2015 THAT SHALL BRING PEACE, HARMONY, GOOD HEALTH, PROSPERITY AND MANY MORE OF THE WONDERFUL THINGS IN LIFE YOUR WAY... and I also wish our WORLD would FIND PEACE, A WAY TO GET ALONG WITH EVERYONE, COUNTRY TO COUNTRY, NATION TO NATION, NEIGHBORHOOD TO NEIGHBORHOOD... FOR EVEN IN OUR OWN TOWNS WE SEE THEM DIVIDED AND IT SHOULD NOT BE THAT WAY... So the saying from the Word of the Lord...
Peace on Earth and Goodwill to "Men" and Women....
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I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...
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I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...