‪#‎GivingDecember2nd2014Tuesday‬

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https://www.facebook.com/GivingTuesday?pnref=story

#‎GivingDecember2nd2014Tuesday‬

My "giving" today will be "giving everyone" an idea of how to give on this "Giving Tuesday!" Whether you are giving a "tip" to your guy that takes the groceries to your car, your beautician a larger tip, giving to one or more of your favorite charities, giving a lift up to an elderly person out of a chair, giving a hand putting a neighbors trash out at the curb.... maybe giving a hug to everyone you see today, and a handshake and tell them you appreciate their "service"... at the pharmacy, the bank, the doctors office... whether you give a lunch today through a local food bank, or donate blood to the blood bank.... it is not how LARGE OR SMALL the gift is... it is the "giving" that counts. Give a compliment, give your heart, give unselfishly, give information, directions, information, there are SO MANY ways, you can give of you, your time, yourself... just give... 

I have posted some places on my Facebook page that are non-profits and so forth that you can give to...whether it be the Arthritis Foundation, The Diabetes Foundation, to AIDS, to the homeless, to the people who need, and to those who just need a smile... give hope... for giving of oneself, is the gift of hope!!!

This NATION and this WORLD above ALL NEEDS HOPE!!!! It can start with "you" and "giving Tuesday!!!!" 

And it would be so incredible if giving Tuesday, turned into giving Wednesday, Thursday, Friday, the holiday, the month, the season, the year.... just one "good deed" can bring millions... so please take a moment, and give... a prayer, a "thumbs up"... Hope... 

With my gift to you today... Rhia... 

"A Sweaty" Drenching and Fearful way to Wake Up...

Well, I have fussed and griped about this "sudden onset" of where I wake up in a drenching, T-Shirt, jogging pants, sheets, blanket, hair, bed kind of SWEAT!!! It has been happening now for about 4 years or so. I have asked all of my doctors and no one really gave me a straight answer. In fact, until today, I finally found out a real medical "name" for it! It is called "Primary or Secondary hyperhidrosis"!!!!

I happen to be glancing at some posts that came into the "Inspire" web blog site by the Arthritis Foundation. Low and behold there is a new post titled "Drenching Sweat"!!! So, I clicked to go and see if anyone had posted anything that might help point me to some kind of answer. I ALWAYS GET, could be your "chronic illnesses", RA, Lupus, etc... OR maybe "hormones"... these are NOT hot flashes... I am bone chilling, shaking, freezing at the same time sweating enough to wet towels down... even my robe last week one morning was totally drenched!

And the "weird" part of all, I usually NEVER SWEAT!! Very Rarely, even in the HEAT and HUMIDITY OF TEXAS, I may sweat a bit at my hair line in the Summer. But, I can work outside in the yard, etc... and yes maybe a bit, but NOTHING like this!!!

Anyway, one of the ladies had posted a link to Web M.D., that described it and gave a name for it. And yes "several" of my medications certainly could be a cause, plus the RA, Lupus and so forth.

The "oddest" thing, is the medication I use for Sjogren's. It is supposed to "help" with my salivary glands... it is called generically "Pilocarpine" or name brand Salagen. It TOPS the list with several other medications as being known to cause this!!!!  Happy, NO! I am not happy. I am not really sure that the medication does much for my salivary glands and other moisture as far as nose and eyes. But, it could certainly be a cause for this totally odd, off the wall, SWEATY RA chick!

5 Talk Street - NBC 5 #605 E - Arthritis Foundation - Jingle Bell Run/Walk

Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!

 http://www.ehow.com/about_5515797_sjogrens-lung-disease.html

http://www.ehow.com/about_5501450_stages-sjogrens-syndrome.html

 

http://www.sjogrens.org/

I REALLY have been pushing about Sjogren's now for a long while. It seems I never REALLY had ANY of my doctors take it all that seriously, even as many times as I brought up the dry mouth, dry eyes, all of the mouth lesions I had and so forth. Then when only about a year ago, I began having my teeth literally rot off at the gum line and fall out, I began to see them a little more concerned. YET, I am STILL THE ONE who really pushed for the medication, which for Sjogren's there is only two. I tried both and am on Pilocarpine and have been for a long while. I spent several years chewing gum with no sugar and the Xilytol or however it is spelled in it, because it was supposed to HELP with moisture in the mouth, used eye drops and still felt like I cannot talk very long without being hoarse and sometimes losing my voice, or if I go anywhere, I have to talk something to drink... not even to the Wally World, and if I am going to shop, that means picking up a bottle of diet Sunkist, or green tea or something, so I can drink it as I shop. If I get in the car to go anywhere very far away from home, I go with a drink and gum. Well, of course ALL of what the few teeth I had left, by the time we finally found out how much damage was done, did make little difference. The "complete surround kind of special X-Ray" of my mouth, teeth, and jawbone, showed 99 percent of my teeth already going to rot out anyway. Thus as many of you know I went through the torture of having the rest pulled, fitted with dentures, of which AGAIN due to the Sjogren's, the bottom ones won't "hold" at all. You also need some "moisture" to help keep them in... the top ones do fairly well. I guess I have enough with the "suction" of them, along with the powdered Fixodent that goes on them, for the most part they stay in fairly well. So, I had to wait at the very least 90 days after they were all extracted before we could even think about the "mini implanted" little pins that my bottom ones will be fitted on, after they are implanted down into my jawbones in 4 places. Then my dentures will be "modified" to fit down on those pins which should hold them into place. I also found out, that the top ones they "usually" don't pin, which I thought they did. BUT, if mine won't stay in as well as they should then I look at putting 4 MORE on the top!!! Which will be ANOTHER OVER $600.00 FOR EACH PIN!!! Of course I still have the "oral/maxillary fissure" which sounds horrid, but a small hole as I have said before between my mouth and sinus passage caused by a root to pull a hole in it, when the tooth was extracted. So, that also is contributing to the top one coming a bit loose at times. Air can get in underneath it from that hole and then it makes the "grip" it has to the pallet of my mouth break loose. Anyway, back to my issues with Sjogren's. I REALLY feel as much as I PUSH for RA, Lupus, Raynaud's, Sjogren's, MS, FM... and other autoimmune illnesses and/or rheumatic and arthritic diseases, that Sjogren's needs to truly be addressed much further also. When it can truly cause as much damage to vital organs, eyes, mouth, teeth, stomach lining, the esophagus, swallowing, drying any "form" of mucous membrane, plus now I read that there is about a 50% CHANCE OF DEVELOPING NON-HODGINS LYMPHOMA, if you have Sjogren's! Women, of course tend to me at much higher risk due to the Sjogren's being Autoimmune in Nature. So, as I begin to think about my new book that I shall be writing on over the next year or so, and doing my part as far as helping to be a voice, to advocate, to be an activist, volunteer and Ambassador, for I feel ALL of those are very crucial also, I am going to be trying to learn a great deal more about Sjogren's, both primary and secondary. I also would love to hear from any of you that have it in either way. I am going to post this on my blog (by the way I am waiting to see some comments and posts from you guys and gals also)... and would love to have some of you jump on the band wagon about Sjogren's. It can be a highly dangerous, and sometimes deadly illness in itself. Plus you can also have Celiac Disease due to Sjogren's too.

Holidays Upon Us - Feeling Lousy - But trying to "Put on a Happy Face"

Just about every one of us know this dilemma. We try our best to make the holidays a special time of year. Whether it be the upcoming Thanksgiving and Christmas Holidays, or the others during the year; none of us want to "ruin" our family and friends holiday season.

So, we often put on that "Happy Face", and try to hide behind the mask of pain, fatigue, stiffness, swelling, and all of the other horrid issues we put up with physically, mentally and emotionally during the year and especially during the holidays.

I am headed out for now to have my pain pump refilled, so I shall finish this later this evening. But, I do want to say I pray everyone will have a safe, Happy and a reprieve from illness for the holidays.....

Rhia

Have a Wonderful Holiday!  

 

 

SECOND PART!!!!!!!!

As promised I am "here", just a bit later than I thought I would be. It has already been one helluva week. Between 2 days of doctors appointments, getting ready for whatever kind of Thanksgiving we are having (not in a bad way, just seems thing keep getting changed around), the entire ordeal about Jim, the accident, all of the ongoing and going and going about doctors for him that either are just NOT accessible, OR they are total jerks and quacks. Talk about some "scheming". I found out quite a bit more on this whole thing of getting things taken care of with doctors that are NOT on the up and up. 

Speaking of... the up and up.... Something happened today while I was at my pain doctors office in Dallas having the pain pump refilled. Of course it is NO secret that I have been in an insurmountable over 5 to 7 days of unrelenting pain. I of course mentioned it to him, and thought he might take the "hint" to either up the pain med in my pump (which can be done) OR just allow me to take my "breakthrough" medication a bit closer together, at least until I am over this damned hump of pain. It is just insanity and it is driving me over the insanity brink for sure. I did get a huge shot of Solu-Medrol yesterday while I was at my PCP office for a recheck. After telling him and then I asked about going to the corticosteroid injection at the office, and then a 14 day step down dose of prednisone, he said yes, most certainly we can try... thus we did. I seemed to have been a bit better this morning. I was able to stand on my feet almost without wincing in pain. But, as the day wore on, between the drive to Dallas, not getting to really eat, then going through the entire refill crap, and of course driving home... Then a "hog for punishment"... I decide to go out after getting home, and do a bit of my "coupon/sales" shopping, which I knew was probably a mistake and really stupid honestly. It was already almost 4pm, I was exhausted in every way from mental, physical, emotional... you name it... but I did manage to make my way down to our local Dollar General and pick up a few things that were "crazy" on sale. By the time I got home, I was just totally wiped. I had to let CVS and Wal-Greens go until maybe tomorrow, and I may try for Family Dollar, but I am not so sure yet. 

I will NOT shop on Thanksgiving, sorry but I think that stinks to the high heavens, that anyone in retail makes employees work on a major holiday!!! If everyone does not get what they need by Wednesday, then they can just do without it for one day!!!! It irks me to the ends of the Earth that they open those stores on a holiday like this one. Anyway, of course "people" will go, and if they come, of course that is money in their pockets, so open they are.

And you can certainly forget me getting out on "Pitch Black Friday"... I am pretty "hair brained" at times, but being out at 2am in the morning to shop, is just not what I call "fun"... Now IF we were headed for WINSTAR, now that I WOULD GET UP FOR! :):):)

Plus in all honesty, I don't have a huge family to buy for anymore... and sometimes it has become easier as the kids have grown up, and like my daughter, has a family of her own, to just send them money, and let them get what they want, need, and like. I swore when I saw my parents do that, I would NEVER ... I always believed in getting a present for everyone... that is partly what made the holiday, Christmas. But, as I have aged, and the kids grow so quickly, it now makes sense as to why my parents, and their parents did it. 

I really should be writing some words of wisdom for those of you who are looking and searching for "answers" in how to "survive and thrive" during the holidays. I am speaking of course at the moment about those of us with chronic illnesses, and chronic pain... from the autoimmune diseases, to chronic pain, migraines, CFS, FM, and the entire gamut of these that cause us grief most every day of our lives. I think I have truly discovered why I love to make a trip to the casino every once in a while. It is because once I step into those doors, until I step out and get in the car to come home, "illness" flies out the door, and stays out until I leave. It is the people, the noise, the lights, and most of all, your mind or for me, my mind is "clear" for a while. I am NOT thinking about medications, doctors, tests, prescriptions, pharmacies, people that are just plain stupid, lazy and don't give a damned that don't need to be in the business of health care at all, if they DO NOT LIKE PEOPLE!!!  I hear it and see it constantly... they either just don't give a damned about us as patients, or they don't really want to be there, ... but I see it more and more from all walks of what the medical profession is supposed to be... greed, laziness, no training, not doing their jobs, and we do it for them... it just makes my blood boil, when I hear that "tone" on the phone. You know, that one on the other end who could care less about my needs as a patient and what THEY should BE doing and they DON'T!!!! 

Anyway, so to step into that huge building that has NOT ONE WINDOW in it... NO CLOCKS, and every kind of sound, feeling, sight, and emotion rolls into those slot machines while I am there... so it is not really the "gambling"... Lord knows I DO NOT have "gambling money"... but it is the get a way from it all. Even if it is just Sunday, and we don't stay the night, still it is a rest from the daily mess. I should "coin" that phrase, "It is a rest, from the daily mess." to put it lightly.

So, for me, honestly, I am in so much pain, even as I type this I am wondering why the hell I am!!! My wrists, fingers, elbows, shoulders and neck hurt so badly all I want to do is sit in the floor and cry, cry, cry, cry.... but then I would have a Migraine, thus that is not a help, maybe a release, but certainly not a cure.

I have "lots" of advise about how to "help" your holiday run smoother, but everyone has their own way to handle it. Some just say NO... some stay home, some go out to eat, or to a movie, or to the casino... for some it is being alone and for others it is being with family and/or friends. For some it is "giving" of oneself, and serving at a homeless center, or church to others not as fortunate as many of us. So, you have to "dig deeper" within yourself to figure out "how to survive the holidays". 

Lately, I will say for me, I have been extremely fortunate, and found some incredibly super bargains on a few outfits, a pair of shoes, some leg warmers I found today, and also racked up some savings on some new eye shadow, mascara, eye liner and I even bought some "false lashes".. but it has been years since I tried to put them on, so I have not braved it yet. So, for me, between reading some really great "beauty" tips, especially those that are truly inexpensive etc... and get a few clothes for a tiny bit of nothing... (I've probably spent about 50.00 on ALL of it)!!!! Between "mega-markdowns", super sales, cashing in on coupons, I got a pair of 80.00 shoes for like 10.00, bought about 7 or 8 tops for about 15.00 or so, makeup around 10.00 leg warmers 2.00!!, plus a few other odds and ends... but I have not spent hardly anything for all of it! So, that has kind of been a "new release" for me... finding ways to have "nice" stuff, without breaking the bank... the better the bargain, the happier I am honestly. So, when things are too much to bear, I open up an email from Total Beauty, or a couple of others I get newsletters from... and even do a great deal of DIY, skin, hands, feet, nail treatments... gosh sometimes we do not realize how many things we already have in our home that work great on skin, hair, nails and so on... so I look for those, and give them a try... if they suck... they suck... if not I am not out anything... 

Okay well, it is midnight, and it's been forever since I've stayed up late like this to write... I am hoping it will help me, and if we are lucky, maybe you might get a kick out of reading it....

Happy Thanksgiving, Rhia, Jim and the family

The Good, The Great, The Days you feel like NO ONE Gets IT!!!! I CANNOT BREATHE

I've just about had it with everything. I cannot stand when someone wants ME to be at their beckon call. But, when I do not hear a word and am suddenly "cut off" it seems, I cannot just hop up and fly off for 3 or 4 days for an event. I am really upset, hurt and pissed that I am "used" when they want me. Then they get me all hyped up to make another trip that is supposed to be the first part of December. Now I cannot get a response by email at all. It is like I am a "stranger" and Don't Exist... but if they need me in the future it will be expected for me to "jump" up and do exactly what they want and when, and fore go the thought that I am chronically ill, and I can't just take off at a moment's notice. And if I find out ANY of my "SO-CALLED" friends have had a thing to do with it, I will really be peeved.... but I can see a couple of them "climbing" the ladder of "fame"... by running over others to do so... anyway, I am just about finished with it all. I am going to take all of next year, or ever how much it takes, which maybe a year, less or a bit more, and write my book. I am sick of putting it off for "trivial" pursuits that now seem like it does not matter much what the hell I bent over backwards to do and help out with. I am no more than someone that is taken advantage of due to the fact of my passion about helping others. Then I am scooped up and heaved in a corner when they are "through" using me. I have been having horrid, night terrors, now for about 2 months or more... and last night really told it all. It was so bad, I was screaming and crying so much, I woke Jim up and he had to come out of the bedroom to check on me. Then it took me almost a half hour to truly settle down and figure out it was a night terror and not real. Yet, it did finally get through to me, when in my nights sleep, I am being put down, picked on, cast away to the sides, and everyone ignoring me, treating me like dirt, so badly that I could not even breathe... which woke me up, because I felt I was literally suffocating... and could not breathe... I am being "drowned" by the very thing I loved to do the most... well 2nd to my writing and blog... and that is my volunteer work... so I am bowing out for the most part, to allow those who choose to cram their "high heels" in my back as they walk all over me... (I saw this when I worked for a woman boss)... petty jealousy, wanting to take over and get credit for everything, taking someone's else hard work and saying it is theirs, and the subject matter goes on and on... well, I am pulling those damned "heels" out of my back, I am going back to write my 3rd book, keep up my blog, and keep to myself... so I may not show up or say as much here especially after the holidays are over. I feel I've been "used and abused" enough, and I am freaking sick of being tortured during my waking hours and it causing me to having horrid night terrors... it is time to get out of that "ladder climbing" crap....

Some of you may wonder why I get "caught up" in all of this. Well, for one thing I take my "advocacy", "Activism", my "Volunteering", my writing, blogging, and being An Ambassador, as well as a "general spokesperson" for those with illnesses, chronic in nature, those that we know will NEVER go away more than likely in our lifetimes, and so my dream is to "build a bridge" to future generations where they WILL have answers, as to why, what, how, when, where... and possibly a way to just say NO, to some horrid, chronically painful, life shattering chronic pain and illnesses. So, whether I am writing a blog post, or posting something in Facebook, or reading someone posts... whether I am "helping" a group, or Foundation... whether I am trying to help several causes and Foundations by "lending my voice and own personal experiences to them, in order to get OUR POINTS across to Congress, to the nation, to our own communities, even to our family and friends, when I am doing any and all of that, then I am serious about my "job". I don't take being an advocate for others lightly. I take it as I am trying my very best to try those out there, that either can't step forward, due to family, illness, lack of funds, or any number of reasons some people can't "lend a volunteering hand". There are those that are "shy", or they are raising families, or they are just too ill, to be able to either go to a Congressman's office, or send an email, and for all sorts of reasons people sometimes are able to get involved in that realm.

I can totally understand, because being a "voice", being assertive, putting your heart and soul on the line to speak with a member of the House or the Senate, or to ask for money for research and development for those who are researchers and may have the golden key some day to unlock and unleash something powerful enough to STOP the pain and suffering of RA, Lupus, Sjogren's, Osteoarthritis, MS, FM, CFS, MCTD, and the other host of autoimmune illnesses, or Lyme Disease, Cat Scratch disease that now has entered as a possible "means" by which some of us "got" these illnesses .... whether that is true or not, we need the people, researchers, money. the backers with funds, the corporations and foundations... the CDC... gosh the list is endless.... but we also need YOU and MYSELF. We MUST put our voices out there... if they "squash" us and tell us to get out, then so be it.... There will be yet another person that may not dismiss our "calling" and is willing to watch, look, and listen... 

I have been contacting my Senators and Representative (Federally) to invite them to an "Arthritis 101" meeting in DC the first week in December. Some of these folks are new to Congress, and we desperately need to "inform" them of just how important our medications, such as biologics, our not being delayed in getting a diagnosis, of getting treatment, and how critical it is for all patients with these illnesses have a fair chance to try and either go into remission, face less flares, not have to wake up every morning of your life, with stiffness, miserable fatigue, pain, and yet another day's fight to see who will when in the end... Will the "illness" take over all our spoon and then some, or will WE remain victor that day, and have spoons left over for the next day.

Life is so very, very, very SHORT!!! Many of us by the time we are about 25 years old, begin to realize that "forever" is not all that long... the 10 years, 15 years, 30 years... it all goes by too fast. We go from completely helpless as an infant, turn around and we are crawling, walking, and running. Turn around again, and we are driving a car, dating, and in college... one more turn and we are parents, raising our kids, and in the next turn they are grown, with kids of their own, and we have been out of high school for decades. You then begin to see "classmates" that are in the obituaries, or their parents are. We see the grey hair where the dark brown, blonde and red was. The wrinkles seem to come on over night. And within a "breath's space". we are as our parents were, feeble, not able to do, go, visit, travel and see the world through those young eyes. Our sight is blurry, our steps softer, and maybe not so sure, and you may even find yourself fighting with illnesses and what they cause, things you never would have dreamed they would happen just a few short years ago. 

I know I've thought back just 7 years ago. Never would I have dreamed I would lose all of my teeth, and need complete dentures. I didn't know I would have all of these implanted joints, many more that are deteriorating quickly, and may need a new implanted one also. Life has just gone by within the vast light and the vast dark, I stood in the gray in between and never gave a thought that I could not wear that pleather mini skirt, or my pleather pants again. I thought I would be in those 6 inch platform heels for many years to come. Little did I know that none of those would be true. That now I try to find shoes that are "pretty", yet they have to be half way comfortable. I can no longer wear some of those mini skirts, and tight tops... and I would never have expected to have a huge bulge our of my right side, where I have an implanted pain pump.  I never would have thought I would awaken to stiffness, pain, and sometimes so fatigued I just can't really do all I want to in a day. I find myself wandering through my own home, through my lists and lists, and wondering how I will do the laundry, vacuum, cook, clean, wash the car, change the sheets, get myself showered, get the pups fed, watered and taken care of, help my Mom with her things, and still need more time to do more things. I have a very difficult time "giving up" anything. Even though, just like here on my blog, or in my new book, I am writing, I HAVE NO CHOICE, I HAVE TO FOR GO something in order to have the time, the stamina, the brain power, to do what I NEED to do and what I WANT to do... and something will have to be put aside. If I had my way, it would be like it was in the late 90's. I could go to college full time at night, write, work full time, take care of the kids, house, yard, bills, cleaning, cooking, sewing, going out on the weekends, studying, and I just never stopped. I had the energy of an atom I guess.... I was a never ending ball of go, go, go, and that included exercising EVERY DAY, walking, go to aerobics, you name it... now if I get the laundry done, have enough time and energy to shower, you can bet before I can finish ONE task, I am exhausted and ready for the sofa instead.... and IT SUCKS...   

TO BE CONTINUED