Tuesday, December 2, 2014

There for Me...

As any writer knows, sometimes things don't play in your mind as maybe they should be. And where inspiration comes only a true writer can see. A silly TV show that went "viral" for many seasons... and for years I never saw any of the episodes. But, this evening as I watched one of the reruns. Something spoke so deeply to me, that I could not even lay down and sleep. I had to get up and put it down on "paper"... Now some may "get the wrong impression" when they read this... it has NOTHING to do with my life now or anyone in my life now. But, it hits me from way back when... I thought fairy tales never came to an end.... So this is a "song" I heard in my head tonight... and I am compelled to post it here. I started not to, and just put it up on my blog... and it will definitely be there also... but for now, here it is:


There for Me...

When you needed me, I was there for you…
And you pleaded for me, cause you always knew…
When you would call, I could hear your words of sound…
Yet, when I called out, you were no where to be found.

We lit the sky up with love in the words…
Sounds came crashing down, as I walked towards…
To find out I was there for you…
Yet, where you were I never knew.

We took that plunge when you were so young…
Singing the songs that should never have been sung…
You turned around and saw me, and even then I knew…
You would cling to me, yet I could never cling to you.

Many nights I seemed to fly so high…
Above the moon and Earth, into to another sky…
As I turned to see the stars within your eyes…
All I could see was all those sad goodbyes…

When you needed me, I was there for you…
Tumbling down the mountain side, I bled for two…
Me and you should have never have been…
And now I feel the pain, it’s as bad as it was, way back then.


Then the darkness fell all around…
The chaotic world, yet not a single sound…
Of those words you said back then…
Did you mean them, when you said them way back when.

I came to you wanting to journey through space and time…
Make my life out, just like Cinderella in a nursery rhyme…
Yet I turned around and then I knew…
That was way back then, but you never had a clue…

The years have flown by and in those many nights of tears…
I cried out to you, yet you never feared…
You thought you and I would always be…
And even now you still try to cling to me.

When you needed me, I was there for you…
And you pleaded for me, cause you always knew.
When you would call, I could hear your words so dear…
And in those words it took me many years to fear…

That for me, never you meant to be…
What you promised, was to always cling to me…
And now in my lonely nights I silently pray…
Never tried to hate you, but I found no other way.

To get over you for so many years…
Through painful nights and all too many tears…
I fell from my own mountain top, and finally seen the end.
Of what I thought, was not even there back then.


When I needed you, you were never there for me…
I could not see the forest, for you stood as the tallest tree..
Blocking this vision, for too many years…
So what I cling to now, is what I know I fear.


Rhia Steele 12/2/2014


Fighting "Monstritis": Tucker Beau, 6, and his loved ones on their juven...

‪#‎GivingDecember2nd2014Tuesday‬


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







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... 


Monday, December 1, 2014

"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

Saturday, November 29, 2014

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



 
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.

Tuesday, November 25, 2014

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