Compassion From Strangers all over the World - There are still some incredible folks out there...

Sometimes life's battles seem too impossible and too difficult to bear another day. All of us, sick or well, have our own "demons", and daily struggles, and even when some may think they are quite small, when YOU are in the middle of them, they can seem totally monumental. When Chronic Illness and Chronic Pain, daily, grinding, fierce, wake up and go to bed with suffering or wondering when the next time you suffer WILL be. It is just fathomable it WILL happen again, thus the word "chronic" comes into play. Well, this past three, now going on 4 weeks for me has been all of that and more. I feel I have "lost" so many pieces of me right now, that I don't even recognize them. What makes that worse, is that I can't truly express it to anyone, because first of all, I do not want to have my closest spouse and family horrendously worried over my mental health, because my physical health concerns them enough. The pain, internal pain pump and all of the extra medicines, walking, or more like barely dragging myself around my drive way every morning, watering my plants, and mostly, NOT! NOT writing, not able to even FIND A word TO WRITE... like my voice is gone... that frightens me. Being so ill, you do not even feel like taking a shower, hell even getting off the sofa for a glass of tea is like going on a 3 day trip, and it just seems endless. I have expressed this episode, these flares, whatever THIS is now to my doctors, my Mom, my husband, my kids, and just about anyone else on FB or out in the world that will listen. And I am NOT a whiner for the most part. I may feel inside like a total loser, a failure, and I may internally fight those forces of evil that are certainly trying to get their best out of me, but usually I CAN do this almost BY MYSELF. Yet, not this time. This is different. This is pain I cannot even describe. This is fatigue, that has made my past episodes feel like child's play. I have "several" physical issues that have become the "perfect physical sickness storm" for me. Which after a very long almost an hour visit with my PCP last Friday, kind of make sense. Yet, how much longer can a person endure? How much more must I take? How much more CAN I take??? You are not usually one to hear me say "I am almost ready to give up".. throw in the towel, stop the fight... I am NOT the kind to NOT fight a battle that I KNOW that NEEDS to be fought! I am one to stand up and face the enemy, and take it on, full force... even if I am left drug out, sore, and tired, I LIKE to say I WON! That is when it comes to chronic illness... Lupus, RA, migraines, chronic joint pain, muscles that constantly hurt, the tired that is beyond tired... I am a battler of it all... and I have battled well in the past.
Yet this time is different. This one is more difficult, it is not the "usual" battle. This is not the usual “nightmarish helluva flare” that we anguish with for a few days, cursing it’s very name “The Wolf”, along with other chronic illnesses and pain… that finally slink away into the darkness in which they so suddenly sneaked upon us. This continues to be the ONE that feels as if it is here to stay, forever and a day.
Alas, someone (and honesty there are several) in my life that are praying for me, concerned and worried about me, and especially worried that the words “give up” keep cropping up in my conversations. As I said above, I feel as if anything that my life is worth right now has been all jerked out from under me, leaving an empty shell of what my existence used to be.
So, about a week ago my husband (not known at the time by me) so extremely worried about all of my states, mental, physical and emotional was trying to come up with some way that he could possibly bring me some renewal of faith, of hope, for he sees I have definitely lost that part of me, as never before. So, he knows about another web site, that is sort of like a Facebook type of site. It is and it is not a “social media” kind of place. I had heard the name several times and thought it was kind of a “techie” type of blog and group thing, more for the the do design and development of web sites and so forth.
Yet, he knew about it quite a bit, and went to research some way he could lift me up and let me know that many, many care, even though I may not even know it. I have that often on Facebook. We CARE about one another! We are concerned and worried when one of our flock is not well , whether it is physical, mental, emotional, having a tough time with life etc.
But Jim wrote a short “post” on Reddit, under a “group” of chronic pain board people, telling the a bit about my current severe flare, about how badly it has gotten me down, and since he wanted to show me that MANY care when I do not even know it, he asked them, anyone, if they would like to, please send a quick or long “message” to me. Whether they also had chronic pain, or knew of someone.. or were someone that just wanted to do a random act of kindness to someone who really needed a huge boost right now, up this STEEP mountain that is really keeping me at the bottom this time. He “expected” nothing, and he GOT EVERYTHING! People, at least 100 of them so far or more (in about 7 days or so) began to send in messages to “me”. Someone they knew little about, never “met” me, just knew I had a husband that was desperate to find something he could do to at least lift my spirits a little, or give me a slight sliver of a ray of hope and faith again. Thus he took the emails he got, put them in “talking bubble balloons” like you see in cartoons, and people also sent different pictures, or many of them did, and he is posting them on the foam backers boards in different places, with these pictures, their names if they sent them, and they are some short, but many LONG telling me how I should NEVER give up, that I had a husband that loved me more than life itself, but the main thing is that they care, and they care from all over the world! From Canada to the UK, all over the US, and all over the world, these messages continue to come in, from total strangers, that wanted to do something “nice”… a random act of kindness to help someone such as me. So, he presented me with 3 of these boards night before last. I was at the end of my rope and even though he did not have all of them together yet, he knew it was time to share his “project” of love.
Well, I cannot even begin to say in words how that has made me feel. Just the idea he came up with is just incredible! What a wonderful gesture of love, and of unselfish love, totally because he cares so deeply, that he went to all of this to show me OTHERS, even strangers truly care!!!! 
I am still just in pure amazement, for one, he went through all of this, so he coiuld prove to me others do care.! What it did was rebuild my “faith” in fellow man. It just seems that lately every time you hear the news, whether right here at home, or far away, something has gone terribly awry. From Mother Nature showing us her “true wrath” for the way we have neglected, abused, and totally ruined all of “Her”… the land, the waters and the air. We have made a horrid mess of Earth. People may try and bury their heads in the sand, and say “we” did NOT do it, and there is NO SUCH THING as greenhouse gases, the drastic changes in weather patterns, and all of these surreal incidents, from flooding to severe drought, from snow and ice, to extreme heat and humidity, from wild fires going insanely out of control, and killing as many as 19 of our great fellow humanitarians. Then just think of all of the other “human” error and horror around the globe. Go from the tornados and hurricanes,  to the greatest fall of humans caring about one another ever. Men rising up against their own, in every nation and on every continent. How many countries are at civil war now? How many “war” and battles are we, along with other nations are going on right at this moment? Just about every Middle Eastern Country is at war within themselves or at was with many of us.Greed is everywhere. From our own government, health insurance companies, doctors, medical facilities, and all around the Earth, greed, selfishness, and taking advantage of just ruining someone, breaking the bank, causing job losses, taking billions of dollars out of the hands of those who need it them most, greed, gluttony, selfishness, non-compassion, and down right evil exists everywhere you turn. Children, killing other kids, and how do those guns get in their hands in the first place? Where are parents? How can a parent let a baby die in a hot car? How can men take women for no reason, and keep them as prisoners for years right in their own neighborhoods? How can many leaders of nations do “genocide” on their own people? Why is it we must FIGHT over everything and we NEVER are able to make one simple decision? When it comes to the “welfare and health” of the people of this nation and others, they would rather allow someone to “die” on the hospital steps than to life their own fellow man a hand up. Money is totally been the ruination of this great nation. Greed has ran so rampant that even democracy is not here, just a mere shadow of what it used to be.
So, when I see everyday folks, all over the world, to a total stranger, sitting in a very small town in Texas hurting so badly she is more than ready to call it “strike 3”, give up, get on the sofa, under the bed, or wherever with the thoughts that I truly am given a “hand up” in how I feel about my fellow man again.
I am so totally blessed first of all to have a spouse who truly takes care of me. He even must deal with his own chronic pain issues due to a very bad lower back problem that he was probably born with. After years of strain on it, that vertebra is a total wreck. So, we must “help” each other when we can, because neither of us are in all that great of shape physically. Yet, he did something so kind, so totally a random act of kindness, that I am totally speechless at the gesture. I know he is making picture of the boards as he puts them together. So when all of the them are complete I will post pics of them. I will tell you people from the UK, from Alberta Canada, From all different states, places, walks of life, sent some one liners, but most entire letters, emails of how much they care about me, how strong I am and can still be, and that they are thinking, praying and cheering for me every step of the battle.
This is a wonderful story, and a wonderful act of kindness, that I feel should be “paid forward” in a way. Others, many others, including two families very close to my heart here in my home town, I found out just yesterday are dealing with some horrible situations, also physically. One of them went to school with me, and was in my graduating class, had cancer 30 years ago. Now, after all those years, they have found out it is back, and sound like with a vengeance. She is only 51 years “young”!!!! Then I found out that another family I have known all my life is suffering a horrible time with the Mom going completely blind due to macular degeneration, and she is not even able to drive anymore. Then her daughter, who I spoke with yesterday, is about 3 years YOUNGER than myself, and she has Parkinson’s!!! Here she is in her 40’s with Parkinson’s! That seems unreal. Plus for some reason I was not aware, she also lost her husband just last year to a full blown PE, Pulmonary Embolism! She was driving with him down the road and he suddenly became ill, and before she got him to the emergency room, he had passed away! So, we can just turn a tad to the “North, South, East or West and see things happening that are definitely worse than our things. Yet, we never can negate what we are going through. Because yes, other things may “seem” worse, yet when you or a loved one, friend so forth are suffering, ill, with Lupus or with any type of illness, pain, etc, then it is bad. So, we should always have compassion for others, but remember to have compassion for your own self also. Anyway, there is also another “bright” spot in this for myself. I did in a small way “get my writing voice” back. What my husband did so unselfishly to help me, and then what others did that is so profoundly wondrous, helped me to be able to write this. So, I may not seem to be able to grasp what I want to write for the book right now, but I have a sense of renewed hope and faith, that once we find out WHY the PAIN is so BAD, why I am suddenly so over wrought with what seems like the largest “flare” of symptoms ever, and get down to “fixing” things we can, or allowing the things that need to heal themselves do so, that my voice is still here. It has just taken a sabbatical, while I get well.

I also want to say to ALL of my FACE BOOK FRIENDS, EACH OF YOU, also MAKE A DIFFERENCE EVERY DAY IN MY LIFE!!! I pray I can do half of what many of you do to help me and feel those of you out there that truly care. We are a family, and always will be. So, I want to thank you also.

I still feel I have not found WORDS ENOUGH to express how touched I am with all of this. I just hope he, along with all of those wonderful and compassionate strangers shall remember they have someone who thinks the world of them in a very small town in Texas.

Rhia

"The Spoon Theory" by Christine Miserandino....

Jim reminded me about the "spoon theory" yesterday. It was "invented" I guess you could say by a brilliant woman with Lupus. She had tried for years to express to her very best, closest friend what having Lupus was truly like daily. Even though the friend "felt"like she really knew, one day they were having a lunch and the "spoon theory" was born. The lady has written a book called "But You Don't Look Sick". Her Name is Christine Miserandino & she has a website at. Here is the "spoon theory". For many they know about this, but for anyone that wants to be able to truly explain to anyone, loved ones, a stranger, anyone what having a chronic illness, such as Lupus is like  ... this is perfect....

 “The Spoon Theory” at    http://www.butyoudontlooksick.com/the_spoon_theory


Please take a few minutes and read this. It truly will inspire you with or without Lupus... and for anyone with someone they know with a chronic illness, such as Lupus, it will certainly bring forth a clarity in how life is daily for those like myself and many others out there... Hugs, Rhia

I Just Cannot Fathom these number of Pain Prescriptions being written and used when a "true pain patient" must almost "give blood" to get a script!!!

This just blows my mind still. I posted it on FB, but Iam still reeling from the numbers they claim of scripts that are NOT for true and legitimate chronic pain patients! As I say below, my gosh it takes an army for me to get my medication, or it did, until I got my pain pump put in. I had to follow very strict guidelines from my pain dr and I saw him frequently, if I wanted him to help me try and be at least half way able to not be insane with pain. As I said, so many pain specialists will NOT see you for "cash"and if they do they charge an astronomical fee and then these medications are EXPENSIVE! One script can be well over $600.00 even generic! So, how would anyone be able to afford the visit and the pills? Insurance sure as hell will NOT pay for ay more than one visit, and you sure are not going to get by with legitimate insurance going to more than one doctor that gives you these meds. Then most pharmacies look at you like you are an ADDICT even if they know you very well. Even afer using the same pharmacy for many, many years and they know ALL of my health issues, they would be extremely leery for me to come in with more than one script such as this, unless it was something dire like a surgery etc. Even then I think they would question it. And I think WG, CVS, and many of the pharmacies even here in this small town keep "dibs" by checking up if they suspect someone is using more than one of them and it is for pain meds for cash... This just seems crazy to me.... I still think this is some kind of "conspiracy" from the government or some lobbyists or something to make it almost impossible for "REAL chronically ill patients to live a life with some quality"!!!!! The seem to enjoy making it almost impossible for us to get ANY meds not just pain meds!!! Hell I had to beg, borrow and go through hell to get the medication to make my mouth moistened since the Sjogren's is rotting my teeth away! The insurance denied one of the meds, and I had to go research my insurance and what they "would" pay for, then ask my doctor to please call that in instead, because the insurance did not want to pay for the other one!!! It took me two hours or more to find out what they would pay for, then I had to disturb y doctor again due to the insurance being stupid!!! And literally even though I have been doing everything I can to keep my teeth and mouth healthy, I still have at least two teeth they probably have to be pulled due to them just falling apart and several others that hopefully they can "patch" and keep together for now!!!

I tell you it is lunacy! PLEASE SIGN THE PETITION!!!!!
I just read an article about people on pain meds "doctor shopping" to get pain pills to sell. What I CANNOT figure out is HOW THEY AFFORD TO GO TO THAT MANY DOCTORS??? You can't file insurance for all of those scripts. The pills are ULTRA EXPENSIVE, so how do they afford to fill as many scripts as they are saying they do??? I have to pull teeth to just get ONE script actually filled out by a doctor and then a pharmacy to fill it. In fact my Pain dr. will ONLY allow you to get a monthly script from a specialist pharmacy and he will only do it there, and they have to mail mine to me from Dallas. I never see the script. He fills them out, that pharmacy picks them up fills them and then they mail mine since I am 40 plus miles away! I know HOW EXPENSIVE these meds are!!! I also know "real" and Legitimate pain doctors will NOT even see "cash" patients many times. And if they do, you jump through many hoops to ever get a script. One visit with mine if you were to pay cash and not have insurance is 300.00!!!! Then any of these meds are 600.00 plus a month!!! So, how they hell does this happen as much as they claim??? I think they have "off" numbers or they exaggerate this! Read this article and see what you think!???? 


http://healthyliving.msn.com/health-wellness/drug-addicts-dealers-are-doctor-shopping-for-pain-pills




http://www.change.org/petitions/time-for-congress-to-fix-medicare-for-the-people-fix-medicare-stop-fraud-and-misuse-pay-good-doctors-as-they-deserve

It is Just Crazier every day with Insurance, Medicare and the Government!

I appreciate all of you signing the petition! :) Thank you so much! I just read another extremely disturbing article in our own Local Paper. Our CITY employees are having to bear a 23.6 PERCENT INSURANCE PREMIUM INCREASE NEXT YEAR!!! This is also due to the AFFORDABLE ARE ACT!!! How can the government call it AFFORDABLE" when we are going to GO BROKE paying for it??? And our doctors are going broke because THEY are not getting paid!???? The premiums here in town for our city employees are going up $50,000.0!!!  MONTH!!!! Not a year folks!! A MONTH! Their deductibles are going to be 1,500.00 for an individual and 3,000.00 for a family!!! This is insanity!!!! I need to let people know it is NOT JUST MEDICARE people it is ALL of us with families and our own selves to INSURE!!! I almost passed out when I saw this article! First of all, our community WANTS to support our employees. YET, we also NEED to balance our own budget! I have to say our town does a wonderful job at that. Even after the tornado disaster, and I know that is going to hit hard too, I know our towns people will make sure our budget is on track. but, to have to pay out of pocket over 50,000.0 MORE a MONTH to hell insurance our employees, then they pay premiums along with having to endure deductibles that high... PEOPLE WE HAVE TI STAND UP AND SAY THIS!!! IS !!!!!! ENOUGH!!! NO LONGER can we continue to sit and allow the government and the insurance companies to ROB US BLIND all the while WE DO NOT benefit from all that comes out of our pockets! I URGE AND BEG ALL of YOU TO SIGN THIS PETITION! IT IS NOT JUST FOR MEDICARE PEOPLE But for EVERYONE who pays premiums, doctor bills, and has to endure going broke if you "get broken"... they do NOT care if you are ill, many of them think well, we will let you die! Honestly, that is how I think many of them feel on Capitol Hill. So, if you want make another petition!!! Get on the band wagon if you are seeing ridiculous premiums and no paying of your doctors! My husband came in from the doctor today!!! HE has NO INSURANCE! So we PAY CASH! AN OFFICE VISIT EVERY TWO MONTHS for him to sit down, our doctor walk in, ask him, well how is the pain? Jim tells him< "the same". The take his vitals and send him on his way for what is now 125.00 OFFICE VISIT!! FOR ABSOLUTELY 2 minutes! But, due to the insurance companies and Medicare NOT paying, the doctors have to price gouge those that pay cash! And they know WE CANNOT AFFORD IT! IF I did not get Jim's meds for either free online or here at the 5.00 pharmacy on the others, there is NO way we could get his medications! And if we had to pay for MINE!!!! I can say that many of mine are anywhere from 300.00 to 1,300.00 a MONTH!!! And I have about twelve plus all of the over the counter stuff we buy, Nose Strips, Tums, Allergy meds, all kind of Vitamins, and we added the B-12 to the list today, which is high if it is the sublingual one! Then you have aspirin, Aleve, Advil and even in generic it is still expensive when you add it all up. The over the counter stuff is just as expensive as the scripts! So, basically WE are SCREWED and TATTOOED any way you take it!
what happened to the days of bartering a chicken for a doctor to COME TO YOUR HOME AND SEE YOU??? They would pass out if they thought they would have to make a "house visit"! But, you really can't blame them, they have to CHARGE LIKE HELL TO GET ANY MONEY IN RETURN! ALL OF IT IS NUTS!!!! INSANITY!!!!


http://www.change.org/petitions/time-for-congress-to-fix-medicare-for-the-people-fix-medicare-stop-fraud-and-misuse-pay-good-doctors-as-they-deserve

Welcome News from the World of Lupus - !!!!

http://www.lupusresearchinstitute.org/lupus-news/discoveries/13/07/15/lupus-research-institute-advocacy-secures-2-million-appropriation-lu




Wanted to share this awesome news from the realms of the Lupus World! Our voices have been heard!!!!!

Wow! Now I am Anemic!

If it is not one thing it is the other...

Okay, here is part of the deal I think with me, health wise. First I did call my dentist and they will see me the 1st week in August. They are going on vacation until then. So I told them I would be extremely careful and try not to crack anything else off of these teeth that seem so very fragile. Next, I called my PCP and got the medication for dry mouth. They have two. I had been on Evoxac by awhile ago, and should never have stopped it I guess. I thought maybe it was not working but now I look back, it was probably helping much more than I thought. So, needless to say my insurance AGAIN decided they did NOT want to PAY even for the GENERIC! And it would cost me 300.00! So, I got on my Humana site, and finally found out they are supposed to pay for the generic form of Salagen. So, I called my doctor back, and told them. They did call me in that one instead, so I shall see if the pharmacy was able to get that one paid for. Damned I feel like crap and I am STILL fighting to get meds! They DO NOT CARE if my TEETH ROT OUT OF MY MOUTH!!! Just another example of Medicare/Med. Advantage plans and bull!
Then I got ANOTHER CALL FROM MY DOCTOR, late yesterday afternoon... I am severely B-12 deficient, in other words I am severely anemic. Which would certainly explain my symptoms being so excessive and lasting so long... the severe fatigue, lack of appetite, being so pale, not able to put one foot in front of the other, even the pain in my muscles, and everything that is "a Lupus flare" are also signs of anemia. The "brain fog" is another. They wanted me to come and begin injections, but I asked since I felt so badly if I could do it at home with over the counter B-12. She reluctantly told me I can try, but if I am not better within a few days, then I have to do the injections... I have not been anemic since my daughter was born 29 years ago, so this is strange for me. It has me concerned. I know it does go along with Lupus a great deal and there is "pernicious" anemia and several others, one of them is actually an "autoimmune" type of anemia, that often does come with Lupus, so I found that interesting. Anyway, as BAD as it sounds at least I am NOT crazy!!! OR if I have I also have SOMETHING wrong other that "it is JUST LUPUS"... I get so sick of hearing that "Oh, IT IS just YOUR LUPUS" acting up! the term "JUST" and LUPUS seem almost sacrilegious to say together. So, keeo my in your thoughts and prayers. I feel like total hell! I just am so extremely fatigued and I have all of the other symptoms of anemia and the Lupus flare, thus I feel like a rung out dish rag, as my Dad would have said... or he would say "pulled through a knot hole backwards" whatever that means...
Alas, bear with me as I try and work on this Medicare thing, the group for it and the petition. I REALLY COULD USE SOME OF YOUR HELP!!! PLEASE HELP AND SIGN IT, THEN pass on to your friends that you know are also wanting to see Medicare back in the right shape it is supposed to be in. Miss all of you... I spend most of my time after early in the am... on the sofa watching horror movies on Netflix... I hope this new medication we are getting today gets me up and going very soon. I HATE not feeling like doing anything, and the brain fog is just horrid....


Wed. the 17th more after yesterday....

Yes, it can be "deadly" honestly.. thus the very reason it is called "pernicious".. the definition of it is basically "deadly". I did Venetia.  Thanks  :) I read the "wikipedia summary and it does give a very good look at it. I realize that all of the symptoms I have had lately, even th pain in my hips can be caused by this. Jason I am like you though... I am not sure why, unless it is the Lupus, that I have such a sudden drop in my B-12. They check it and about 4 months ago it was on the "low side" of being "okay". So, why within 3 or 4 months all of a sudden it dropped kind of concerns me. but, it is also a type of autoimmune illness, thus Lupus I am sure plays a role in it. the PA that saw me last week noticed my mucus members in my nose and mouth were very pale, and I was very pale. Then all of the symptoms of severe fatigue, nausea, the leg and hip pain, not wanting to eat, nothing tasting good at all, and I have even been all of a sudden kind of "depressed", but not like regular depression. I thought I was just upset from being ill so long, but I have been crying when I try and walk in the mornings outside, and I can't even stand to pick up one foot I feel so bad. But, Jim has caught me several times in the past 10 days outside sitting alone, or walking (or trying to do my early morning walking) and I am just boo-hooing. Yet, not like a feeling of "depression" of the regular kind. I looked it up and sure enough it is another symptom of this B-12 deficiency. I am getting some of the sublingual B-12 stuff today to take. They gave me the injection yesterday, BUT then did not say a word about giving me more. I read I was supposed to be an entire "set" of them for like a week, then slack off to like two weeks, then at least 1 monthly OR I need to take the oral ones daily forever. So, I am not sure where the mix up is, but I see my regular doctor there on the 1st of August. Unless they tell me differently, I am going to get the oral stuff, take it daily and then I will have a long discussion with him about all of this. He happened to be gone last week, so he was not there to find out immediately what was happening to me. I think he would have probably recognized due to knowing me so well, that I may have needed either injections immediately, or he would have been quicker to diagnose my issues. He knows my total situation so well, in fact he was the one that actually "found" my MCTD, Lupus etc. Had I not had him to be so astute in looking at me, and what all of the issues I was having was being caused from it may have been years before I finally found out, if at all. So, he totally can almost "tell" as soon he as sees and speaks to me what the issue is. He was the one that also found the rare thing with my myoglobin, which is still high also. So, I will make sure we do speak about all of this in August on the 1st. Then I will let my Rheumatologist and so forth know. I had a spell right after the injection that worried me a little though...we let the office, Jim took me, because I just did not feel like driving at all, and we started to the store, and I began to feel cold/hot and clammy. We picked up a couple of things for dinner, and when we got home... I was sweating but had the chills. It really concerned me due to the Humira and I have to watch so closely for infections. I had not ran fever, but that "chilled" yet hot, and clammy does not sound great... Anyway, it may have been our weather. It had been cooler here but the humidity is off the charts... and I got kind of cooled off in the doctors office, then out in the humidity, then back in the house, with our ceiling fans running and the air on... and I happened to have had the fan pointed at me sitting on the sofa... thus it could be just getting a little sweaty due to humidity, then coming in and the fan on me... but I hate when I have something like that happen... anyway, I hope the B-12 clears up some of this freaking fatigue. I can't even pick my arms up to type... they feel so heavy also... it is insanity... and I thought the Lupus fatigue was bad enough... then add this onto it... not fun!