Showing posts with label illnesses. Show all posts
Showing posts with label illnesses. Show all posts

Thursday, October 13, 2016

News From National Pain Report and Dealing with the Congress, CDC, and Government and Chronic Pain, Medications and much more!!!!

Chronic Pain Patient Rally Set for Washington D.C.

by Ed Coghlan

PLEASE GIVE THIS A READ! IT WAS in my newspaper a couple of days ago, and I wanted to post it here, separately because I know MANY of you are TERRIFIED of what us, as Pain Patients, Chronically Ill, and Already been through the mill, many times shall do, if things change drastically in regard to our medications.... So, I felt this needed to "stand out"... boy I need to again, since it has been awhile post my battle since the age of 17 years old with chronic pain, that started with severe migraines, and never stopped, going into all different types of chronic illnesses, that cause horrid pain....

The YEARS I SPENT just "trying" to find a doctor, a legitimate pain physician to treat me.... and it was only about 10 years ago, I FINALLY FOUND HIM IN DALLAS TX! The man is a true "hero" in my book for sure....

Friday, April 29, 2016

Being Totally "Beaten down" by Life... or Lack of Quality of Life...

I TRULY feel HORRIBLE for even thinking this, but I am so disgusted, upset, resentful, and feel as if I have been a "prisoner" on a short leash for so long now.... 1st is was my own illnesses, surgeries, and all that came with the Lupus, RA, Sjogren's and so forth. Then, next was Jim's car accident. WE both felt like VICTIMS and felt TIED DOWN due to how severe all of his injuries were, and HOW FOR A LONG WHILE HE WAS UNABLE TO DO ANYTHING... and NOW IT IS THIS NIGHTMARE WITH MY MOM... I am trying to REMEMBER this is NOT her, and it is NOT HER FAULT, BUT TODAY I am just plain and totally "resentful" of what has been thrown in my lap... She talked to me as if I were a low life today, she accused me of "taking stuff" and Moving stuff... and told me "when she got home" some woman has messed up the whole house"... and I asked her "where she had been" and then she says < Well, at home!" and then I say well Mom where are you now? And she said "HELL I don't know"...

wherever you or some other "woman" takes me.... I "knew" sooner or later" due to her personality being much like my Grandfather's, that the "derogatory" part of her personality (for lack at this moment for a better term" would probably "rear its ugly head at me"... and today it did... and she was telling the "aid" today, that "whomever that woman is" she is mean to me... in other words, she has NO CLUE who I was, and furthermore, that I was her daughter, and I have been nothing but busting my ass to help her! She wants to refuse any help, she does not want the aid to help her shower, etc... she thinks she should never have to "shower"...

and I found drinking glasses in drawers in the kitchen, and things all spread around, that were NOT like that when I left yesterday! She does NOT recall getting up when no one is there, and she digs through stuff, and puts stuff where it does not belong, and then accuses the "women" or "woman" who comes by all the time of moving stuff and making a mess.... In less than 4 weeks she lost 6 more pounds! She just will "barely" eat when I am there, and even though the fridge IS FULL of things to eat, she will NOT get anything out and eat it... then she said it had been "days" since anyone came by to check on her... PLUS here I have this awesome opportunity to go to the Conference in Nashville, and again - I am a "prisoner" and can't even leave for a weekend!

 I am so fed up, and I have told her, and the nurse that comes by also told me himself, when the doctor finds out she is not eating, losing more weight than ever, will not get up and help her own self, will not do the work with the PT, and so forth... he is going to want her in a nursing home... I've cut the gas off to the heater, because she tried to turn it on... I am almost ready to turn it off to the stove.... I found out by "watching her" today... that it is NOT that she does NOT want to watch TV, she has no clue how to turn it on, or change channels... because I finally turned it on today, to make sure the new antenna was working correctly, and I could tell her has no clue how to use the remote.... anyway I apologize for seeming "hateful"... but I am "tired of" my own life always "on hold" because of something, either my own health, now this issue with her or whatever it is, comes along and rips out the parts of my own life I want to live.... I am 56 years old, and after already suffering a heart attack at 40, then being told I would NOT survive another, so I moved away to Seattle, in order to get away from whom was "killing me" in a matter of speaking, only to have other illnesses bog me down, surgeries one after the other, then the massive and horrid car accident with Jim, and now this with Mom... I have survived a 2nd MI when I was 50... but you know I would LIKE TO HAVE SOME KIND OF LIFE, before I am TOO old or TOO ILL to enjoy it! Sorry all of you, I am just in a spot of being knocked down that damned mountain, and feeling battered and bruised... and I am not sure I can climb again....

Wednesday, March 9, 2016

The Latest Addition of my New Newspaper that goes out Daily "All Things Autoimmune"

Here is the link:


Above is the LINK to the Latest Addition of my New Newspaper! This Will be Daily, and I update it sometimes twice in a day or so. It has a GREAT DEAL of the latest information about Lupus, RA, Sjogren's, Chronic Pain, Lumbar, Cervical Spine issues, along with other health information for you to read and use. I had began this kind of as an "experiment" and decided I liked it so well, that I would make this a daily, permanent addition to my blog, and my Facebook, Pinterest, Twitter and other social media informational places. It will have things about new Technology, mostly health but other forms also. I am able to choose what it has in it and "tweak" it for my readers. So, PLEASE use this link where you can put in your email address and "subscribe" to the daily addition. It will send you an update if I do an update, so you can have the latest information.

Bear with me, I am doing a "revised
" look and feel. I've upgraded so I am in a learning curve as to how to do some of the new things I want to do. But, until then I post the link daily in FB, Twitter, IN, and so forth so everyone can find the new paper for the day!

 Here is a "thumbnail" of the top portion of today's paper. This way you have an idea of what it looks like right now...

Honestly, I have been quite pleased with the articles and information it provides. It has made a world of difference on researching the subjects that are important for health issues, technology and how it all effects us....

Friday, December 18, 2015

Life, Pain, Lots of "Stuff" and living with "what we are given".....

Got Mom through the lumbar ESI injections early this morning in Dallas.... 3 different places, and hoping her back pain improves... our Pain Specialist seems to think they will help a good deal...

My "surgery" for the new pain pump (replacement) is on December 29th!!! One heck of a way to end 2015...

My severe pain, in my shoulder blades, down in my elbows, and even into my wrists and thumbs, NOT my other surgeries, thank goodness... BUT, I need another cervical neck disc replacement... I believe he said C-4 ?? is 80% COLLAPSED and has to be fixed...

Good news, the abscesses, one gone all the way, the other about 90% closed also... :)

Bad news the pain is horrible... and I still need the lumbar/sacral back surgery also... ALL of course postponed for at least 4 months now due to the cellulitis/abscesses on both top thighs....

Got the puppy, got his 2nd boosters... and got my hair cut, that was yesterday! I love it, or I will in about a week, once it grows out just a tiny bit... then it is really better, than when 1st cut... and it is SHORT!

Holidays, well suck... my kids will be not around... busy, plus my daughter 8 hours away or so...

And I've had an EXTREMELY ROUGH WEEK, EMOTIONALLY... I AM SURE DUE TO MANY THINGS, AND THE HOLIDAYS, after losing my Tazzy who was an Xmas present 12 or so years ago... plus Jim not here and in Seattle...

Just so much going on, and by the time I "think" I may have time to write or do something else different, something else happens, like I had to put a new flapper in Mom's toliet this week, in among everything else....

Seen some awesome Christmas Movies, I love Hallmark Channel... and other movies as well... the "Coat of Many Colors" about Dolly Parton's young years, was amazing!

So, here is a new pic of me....

 Happy Holidays to All - May we have Peace, Comfort, Joy, Hope and Faith throughout the rest of 2015 and into 2016 - to Eternity!

Thursday, November 26, 2015

Being Thankful - Thanksgiving Day, the holiday upon us, and finding true spirit when you least expect it....

First of all Happy Thanksgiving to all of my readers. I am so blessed and thankful for those of you that follow my blog. I know at times, I don't post enough, and since my life has been in a chaotic time in the past several months, I feel as if I have let those down who follow my posts, and writing.

As I had said on Facebook, I am thankful for some things in my life, even though loss and grief have been troubling me now for a bit. So, I have had to really dig deep into my heart, to find out where the truest of blessings lie, and I have done that.

I am so very thankful that my daughter Amanda, her husband Jimbo and my three Grandkids were able to come up and visit, even though it will be short. I got to see them last night for a couple of hours, and as I hugged my daughter's neck, the tears streamed down my face, and I did not want to let her go. It's been over 2 YEARS since I got to see any of them. They live down by Corpus Christi, which is about 8 hours away or so, and with the boys in school and activities, both of them work now, and my Granddaughter is a Senior this year, they stay very busy. So, it was the best thing I could receive is getting to see them after all this time. I also got to visit with my son, who lives closer, but he also stays busy with a job, and his own activities, so he does not get down as much either.

I am thankful that it "appears" the two thigh abscesses on each thigh, the left one seems to be healed and closed in (hopefully this time it stays that way), and the right one, although not well yet, got a good report from the Wound Care Specialist yesterday. He seemed to think it was beginning to heal, he had to debride it again, which hurts like heck, but it seems to not be infected anymore, and the "collagen" Prisma, is helping to heal it and keep it from getting infected again. So, I am thankful to know that those may finally heal, and be behind me very soon. From there of course, I face surgery, to take out this "motor stalled" pain pump, and put a new one in. I was hoping to have that done the end of next week, BUT, I see the wound care specialist next Thursday, so I am not sure my Pain doctor is going to want to do surgery on Friday. It may be until the following week, which sucks... I really wanted to get it over with BEFORE then, so I can be healed for Christmas. Which is not that huge of a deal, as long as I don't develop a "spinal headache" again. Last time, where the catheter attaches to my spine to put the medication into my spinal fluid, did not seal completely and a tiny hole, can cause a leak in the spinal fluid, thus a spinal headache from hell ensues. And they are horrible. I could not even lift my head from the sofa for 5 days. I drank enough caffeine for an army. I was drinking Caffeine drinks left and right, so it would seal itself over. Thank goodness it worked, and I did not have to go back for surgery, to have a "blood patch" put over the hole. Thank you "Star Bucks".... I got to have as many of those as I wanted for a couple of days!

I am thankful to have my Bub's with me. He and I have a small Thanksgiving feast just for us ready to heat up. I made a small portion of stuffing, of broccoli and rice casserole, of sweet potato casserole, & I had a couple of rolls I bought this week. Plus even though I love home made cranberry salad, we shall settle for it out of the can today. And I had made a strawberry cake with a bit of a twist, it has strawberry preserves in the middle of the layers, and then the frosting is whipped in with cool whip, so it is much lighter. And my daughter brought up some of her incredible pumpkin roll. So, I have a couple of slices of it also for dessert..... nothing fancy, and I am not making a huge bowl of anything... now days I can't eat a whole lot at a time, and Bub's does not need to LOL...

Plus, I "suddenly" had a new person appear in my life in the past couple of days. It was a friend request on Facebook, and I said yes... and wow, talk about someone out of the blue, "fitting" the friendship values, that I do. It was totally shocking, and I certainly was not looking nor expecting it. But, we seem to have a great deal in common, even born the same year... ;)

So, as this year starts to wind into the holidays, and then quickly fall into yet another New Year, I hope and pray things are BETTER, for 2016! It is more than time for some happiness and sunshine to reign down upon my shoulders, and others also....

Plus, as I said on Facebook, I intend on finishing my 3rd book in 2016, even if HELL freezes over....

As the days go by, and nothing else to do..( a line from one of Stevie Nicks songs) - so I have the new boots, the jeans are on their way, now if I can just get the courage up to go out, and get the heck out of this house... I am so sick and tired, of being either here, at Mom's or at the doctor's offices...

Thank goodness I am no longer having to "edit" my own conversations here, and posts. I can say what the heck I please, and if it offends someone, then I guess it does... they can get over it, or not... just saying...

Nothing huge here today, other than a new person, hopefully someone that shall turn into a friend as I said "suddenly appeared" out of the "Blue Clear Sky" as George Strait's songs goes...

Alas an email that made me "feel awesome" about myself for a change... honestly, I thought I had lost all of the "want to" of finding friends again... but that is not true... it is just taking awhile to move past the pain, grief and loss... loss of something I knew for 13 years of my life... and suddenly within a day, it all disappeared... almost as if it never existed... and I STILL DO NOT KNOW WHY??? And I have given up asking... I feel it is futile to "beat a dead horse" as the saying goes...

Living in the realms of "why" is no way to live... why did this person leave? why do I have to do chronically ill? why does everything fall on my shoulders?, why can't life just let up and be a bit easier?... why why, and more why's... and they can haunt you like a love that has all but gone and disappeared... and there is no real answer only questions of the heart remain... tis the story of life and love... you either "fall all in it" and hope that it is forever... or you spend your life totally alone and in misery....

Alas, I prefer NOT to live in misery.... not if I can help it.... So, I bid everyone an incredible holiday weekend, be safe, take care, and always look for that shining star to guide you through even the darkest of nights....

Thursday, April 30, 2015

WEGO Writer's Challenge! "You have made it!!!! 30 days and 30 posts! #HAWMC

Wow! What a fast month this has been. I realize I post on my blog daily most everyday of my life. Unless I am sick, having surgery, or out with myself or family at the doctor's I keep my blog very current. Often times more than once or twice in a day. Depending on what I am finding online, there maybe several posts in a days time.

This has been a wonderful and thrilling April 2015! thank you WEGO Health for the chance to be in this "writer's challenge" and I hope to be able to do it "annually" for as long as you offer it. The prompts were fantastic and it really gave me a much broader sense of what to write about. Sometimes as an author and writer, and blogger, I feel I get "stuck" saying the same things over and over again.

So, having another party give me the "prompts" helped to open my mind and heart up to write about some things I may not have thought about. So, I commend all of you for the hard work, for the "tweets" for all of the other writers, bloggers, and authors out there that I have gotten to know over this past month. That is another awesome thing about the Writer's Challenge. I've been able to "meet" new people, and see what they say about some of their own battles with all types of health problems. I thoroughly have enjoyed all of what I've read and I have learned so much from each of you. That in itself is such a wonderful blessing.

Oddly enough, now that we have become an "online" world, where "everything" can be known within a few short clicks on the keyboard, makes our world seem to be a much smaller place than it used to be. So, I may make friends with someone right here in the North Texas area, or maybe someone in Australia. I love being able to know people from other states, and countries. To see how their health care is, how far ahead some are from us, especially the UK, when it comes to Autoimmune Illnesses. They seem to be several steps above us, with new medications, research, clinical trials and more.

It is difficult to pick any one thing about the "prompts" or the entire Writer's Challenge that I could say I was not that crazy about. I felt that you did an incredible job of really making us dig deeper, and really think about different things when it comes to our own health issues.

I loved ALL of the prompts. Of course there were a few I liked more than others. I have to say the "acronym" was one of the biggest challenges. I liked it, but it was one that I guess may have been down on the scale of being a favorite. Yet, I learned things from it also, so it maybe a "less favorite" but I did partially enjoy the challenge.

The product review for me is somewhat a difficult one. I feel that I may not really understand exactly what you guys and gals were looking for. I tend to write and blog more about medications, research, new clinical trials, and so on. So, it took me awhile to decide whether the "favorite" products should be something more on the "medicinal" side, like prescriptions, or more like things we buy over and beyond the physicians, medications and so forth. For instance what I use on my mouth, corners of my mouth, my skin due to the Lupus, discolorations and so forth. Some I am sure have other types of devices that may use, such as a "zipper pull" or something to help get things off of tall shelves, and so forth. I am sure many have types of gels they use for sore muscles and so forth. So, I tend to go into the "mini implanted titanium rods" that hold my dentures on the bottom very tight. After losing all of my teeth within a year to Sjogren's, those have been lifesavers for me.

I would love to see even more types of "prompts" possibly on a more personal level. You already have given us quite a number of those that required us to open up more about our battles with health problems. But, I could see maybe a prompt next year that asks us to open up and tell some of the even more hardships, and things we go through that we may not write or speak about much.

Other than that, hats off to everyone! From all of the gang, of gal and guys at WEGO Health, to everyone who participated in the Writer's Challenge for this year, I commend all on their awesome posts, and what they said and chose to say that truly gave me new insight to myself and other illnesses, medications and how many of us are so "near" one another with our stories.

I loved many of the prompts. The "word cloud" was new to me and I really enjoyed it. The "Hindsight is 20/20" I truly liked. Stress Awareness, "telling someone "off" when they hurt your feelings", and the "travel" prompt was great also. It is difficult to pick one over the other because all of them were enjoyable. 

 I will be so excited to see what you "prompt" us with for next year! "If I am here, able, and still kicking, I look forward to participating in April 2016!!

I do hope and pray that by the time we do this again in 2016, my 3rd book will be completely written and published!!! By the way, that is another thing doing this has helped me with... material to use in my book. It also has given me some very good ideas about what to say, how to say it, and gotten me in the habit of the daily writing. I hope to take that even further, so I can finally finish my 3rd book (my own autobiographical journey) through the madness of chronic illness, autoimmune diseases, chronic pain, and all in between!

Again, I am just elated, yet a bit sad that it is over!


Again WEGO Health, I've had a blast with these this month! I appreciate ALL everyone does for us as patients! You guys and gals rock!  Rhia

Wednesday, April 22, 2015

"RA" is not a "serious" of a medical issue as before? Really!?[mycred_affiliate_link]

The REALLY sad truth from this story, and from others, is that "some" people actually believe this. If we are not limping and carrying a cane, or in a wheelchair, have a walker or even go out in the public looking "half decent" with makeup on and your hair not a mess. The very first thing I hear is WOW, you must be better!" Better from When? Really? Better from when I was almost screaming in pain earlier today with my back and hips? From 2 weeks ago, when I just didn't feel well enough to "dress up with my makeup"? The other sad fact, and I know it to be true... if you are ill, in pain, especially chronic pain, and you are seeing your doctor, at times I have went in, maybe deciding not to look so horrible... so I do put a bit of color on my cheeks and a swipe or two of mascara... you can almost bet the doctor does NOT take you as seriously as they do when you walk, crawl, or come in looking like the "death has been warmed over".... not all of them, but I have seen it more times than not... so, especially if I am going in for something like chronic or new pain, bad enough I am willing to do just about anything to get rid of it.... I sure as heck don't go "looking" okay. I don't put makeup on (I don't usually feel like it anyway)... but I realized years ago, you as a whole may not be taken as being in that much pain, if you are not wincing and in tears.... also MEN are taken much more seriously, as a whole when they go into the doctors office, especially with pain, than women. We, as women have seen it, been there, done it, bought the shirt, jacket and book... Men have it much simpler. As a whole, they go in and tell their physician the issues at hand, and usually they will get the treatment they need. At times women must jump over hoops, and hope for the best. It is better than it used to be, but how many of us have been told... you are too emotional, you think about it too much, maybe it is hormones, are you stressed, maybe you just overdid lawn work, or have you been out and about shopping to much?? Those are just a few.... So, when this story came to me via email, I knew I needed to share it. I will also put this up on my blog..

Tuesday, April 21, 2015

Hobbies - #HAWMC - Wego Writers Challenge - April 21, 2015 (this is actually a day early for Wednesday the 22nd.

Over the years I've had many different types of "hobbies". I've always been on the "creative side", thus anything with an artistic or creative flare really suits me.

I learned how to crochet and do counted cross-stitch when I was in my early teens. I love to read books. I love to do all types of flower arrangements. You never know what I may come dragging in the house! From a piece of an old log, that I used to put flowers, ribbons and greenery on. I have 3 of them. I've done Christmas themes with them. I've also done Easter themes, and even one year did a "Shamrock Green" for St. Patty's day. I usually have some type of wicker broom, weather, or even some different very straight types of limbs from trees, that I've made sure are dried, wired those together, and put all types of decor on them. I always have one of those hanging on our front door.

I have oil painted, and was told years ago, I definitely had an "eye" for it. I've played the piano since I was about 7 years old, love to just mess around on the drums, keyboard, and even "write" lyrics and come up with the music for them. Of course writing is one of my all time, best loved, hobbies. It began also when I was quite young, and has been something I've done all my life, through every winding road, on a bus headed for Seattle, a plane headed for Washington DC or Vegas, on road trips, and I've been known to "scratch" down a few words to a poem on a piece of paper or a receipt while sitting at a red light.

I have a "huge" hobby, than really probably is not really considered one. But, it began as kind of a "hobby" for me. Then out of what I felt was necessity, being into research about all types of medical problems, from medications, to illnesses, to research over so many things that effect us on a physical level, along with usually a mental level also. Thus, as a hobby it began, yet now it is not only a hobby, that I absolutely love; it has helped me attain I feel some doctors that I trust, given me direction or suggestions when I need them, and also possibly helped some of my physicians to better understand my health issues at times, more than they do. After all, doctors as a whole, are all too often swamped with other patients, calls, pharmaceutical representatives, prescriptions, and the other 1,001 things they must do in the course of a week. So, I have watched a couple of my specialists truly be almost relieved that I do "have some understanding" of my conditions, so they can then decide of a course of action to take when it comes to treating me.

I am someone who loves to bake! I just absolutely love just about everything "sweet"! So, I am almost in "hobby heaven" when I am in the kitchen preparing for some awesome new recipe, for a new pie, cake, cookies, you name it. I love doing it.

I enjoy "people watching" at times. Not to be nosy, or like I want to say anything to them etc. But at times I find it very interesting the items people buy, whether at the market, large stores like "Wally World" or shopping malls. You can truly learn a great deal about someone by what they may have in their grocery cart,  or what kind of clothing they try on in a department store. Perhaps you are out for a stroll, or you are enjoying the outdoors. It is interesting to see what people are doing when they are outside. Are they exercising, playing with their kids, just having some quiet time, listening for nature in all of its glory. No matter where you are, where you go, people can be so totally amazing to watch.

I do like doing some like gardening. I have LOADS of "house plants". If I counted, I would say at least 80, maybe more. Believe me in the winter when they all have to be brought in, our small home looks like "jungle fever" has hit it. I love to be able to take a small plant, and after a bit of love, food and care, it can grow into something so beautiful. I used to love to mow, rake, do heavier gardening types of things, but now with my health issues, some of those things I am no longer able to do as well, if at all.

I am a "giant" DIY person... (do it yourself). Nothing thrills me more than to be able to "repair something", or fix something. My Mom never ceases to be amazed at all I can "do", "fix"... repair. The DIY is "almost" as good as me saving a HUGE amount on groceries, clothes or whatever it maybe. I NEVER and I mean NEVER EVER pay or will pay full price for anything. I am an avid coupon clipper and shopper. I've saved anywhere from 24% all the way up to 85% on certain things along the way. I watch for those "clearance" markdowns, with an additional amount off, and then all of the coupons I can use also. So, for me, "saving" a great amount of off something I really need or want, is a hobby for me. The MORE I save. the happier I am. Don't get me wrong, I am not the "Queen of Coupon-o-holics. I a not one of these buy 50 newspapers, or dumpster dive for them in recycle bins, but I do get mine of out my own newspaper, and then I frequently print MANY coupons. I also NEVER only in a very rare situation pay for "shipping". I always do and about 98% of the time, I do not pay any shipping. So, that is yet another almost hobby for me.

If I sat here and gave some "foggy brain thought" a bit more, I am sure I could come up with several more things I so enjoy doing and consider them hobbies.

A piece of why I do advocacy and activist, and volunteer work, is because they are kind of a hobby to me. Yet, I don't want to sound condescending when I say that. I guess what I really mean is from my first experiences of blogging, and getting into Facebook, then later finding out how much I would love to be a "voice" for others when it comes to illnesses, pain, and even other things in life... kind of back then, were a hobby of sorts. Since then it has turned into much more than a hobby. I feel it is truly a part of my life daily.

Monday, April 20, 2015

Writers Challenge Sponored by WEGO Health April 19th 2015 - IF You Could Travel to.... Where might that be & How to do deal Chronic Health and Travels

WEGO Health has really "hit the nail on the head" with their "prompts" for their April 2015 Writer's Challenge. It seems each one of them brings out things I may have not really written much about. Thus now I am getting new ideas, even for my own book I am working on.

Thus, if I could or already have been "anywhere" I travel to, or I've already been there, where would that be?

I have several "1st thoughts". I LOVED Seattle! The 5 years I spent there was better than fantastic. The city, the people, the food, all of the wonderful views, and spectacular places to go see and do things, it just seemed like the "panacea" of life I was looking for. It has been 10 years since I moved back to Texas, and I still miss Seattle.

Then there is portions of California that I truly loved. Lancaster/Palmdale CA were absolutely where I felt I should be. That was in 2001 that I drove myself all of those thousands of miles, only really "knowing" a couple of people. Yet, within days of being there, I had found a couple of dear friends, a place to live, a job, and felt that was my "home". Then Jim and I lived in San Pedro for a short while. I loved it there also. The weather was perfect, and it was also a beautiful place to be. Although I really miss Lancaster and Palmdale, now I know that is just not where I belonged, and neither was San Pedro.

We spent a week in Hollywood Florida! It was like paradise! I had so hoped the job Jim went to interview for, would pan out. We had found the house of all houses, that was about 3 minutes from the beach! It was also a place I could have seen me settling into. I could see a Sunday morning, $2.00 breakfast on the beach, with a Mango Frozen Daiquiri in my hand. Yet, again as much as I loved it, and I think it was more the unbelievable house we found, I just cannot say it would have been where I wanted to be.

I've now been to Washington DC! It was awesome, and I would definitely enough another visit, and hope to again pretty soon, but it's not my "home" either. Same for Pagosa Springs CO, and the "Wolf Creek Ski Lodge".... and I do wished I could go snow skiing again. Stupid body, has to be jointed "disjointed", with all of my replacements, knees, shoulder, and so on, that part of my life I've fondly had to give up also.

Now Las Vegas 0 Loved it and definitely will go back - hopefully soon. It was like "no other" place I had ever been. I just basked in the glow of "neon" signs, lights, sounds of the slots, and all of the great entertainment, huge Casino's, hotels, it is a place everyone should go to at least once in their life.

I've been on vacation in several different states, and of course all around Texas. I truly felt my "hometown" of Ennis TX (Home of the Bluebonnet Festival, Polka Festival, and the All Concrete Motorplex Drag Race Track, would never be my "stopping off" point in life. I guess life changes and we must "go with the flow" as the saying goes. It is not that I just despise this place. I am not really a huge "city" fan, and am more of a "small town" feel type of person. Yet, when I left on that bus in October 2001 headed for Seattle, I truly felt I would never reside" in Ennis again. At the time I had been through way too much "drama", gossip, not being able to "be me" I guess you could say. If I happened to wear a top and show my belly button ring, tongue ring or a tattoo, I was the "Queen of Debauchery". Thus, after leaving here, all of that melted away. I could show a tattoo, or wear a mini skirt, without feeling like I committed several small crimes at once.

So, now to the main question, if I could go anywhere, or had been already, where would that be? Well, I've never traveled abroad anywhere. I've not been "overseas" at all. I truly believe if I was able to go somewhere it would be somewhere such as Tuscany. Of course I am not sure if what I've seen on television and in the movies are a true look at somewhere like that. But, to see an incredible countryside, with lush green all around, and ride down a small cobblestone street, with the smell of fresh bread, beautiful flowers, and people taking life a bit slower would be where I would love to be, at least for a while. The look and feel of those huge Cathedrals, and buildings that have been standing for hundreds and hundreds of years, decorated ornately, and something such as a Castle that I could go to and look down over some incredibly beautiful country side and small town would truly be an inspiration for me. I feel I could go to some place such as that, and be inspired to write, to oil paint again, to play music when I could, and I honestly feel that my "body" might even partially "heal" itself. I know just changing your "destination" does not really mean you will be totally healthy again, but I do feel I would have a "better" me in some place such as that. So, through all of the places I've lived and visited, I would consider moving back to Seattle possibly.

Yet, my "dream month" destination, or possibly longer would be some small place in Tuscany. When I go and flip through the pictures doing a search, seeing all of the incredible buildings, cathedrals, artwork, everything just like it was pulled right out of a pictureest view, all of the statues created by those who have long passed away, yet their legacy lives on and on, within the halls and streets of such a magical place... As I said, just the idea of stepping into a scene such as that, almost melts the stress away, as I sit here writing about it.

I do have a few things that I've learned about travel now that I am plagued with this ridiculous autoimmune issues, especially about riding too long and so on.
Wear comfortable clothes, whether it be on a plane, train, bus or traveling by car. Don't set yourself up, where you MUST set for hours at a time. Try to pick a way to travel, and of course by car this is the best, where you can get out every once in a while, stretch your legs, back, and be able to move around. The longer many of us have to sit in one place, it gets to where it just hurts too much. Try to travel as "lightly" as possible. Gosh, when I was younger, I would pack my "entire closet" for a weekend! Now, I've learned to pair down a great deal, pick pants, a skirt, dress, jeans or whatever, but make sure you can interchange several tops, a belt, scarves, or something to be able to have one "outfit" that can be several depending on accessories. I LOVE HEELS! And I take them even when I may not wear them.  But, do your best to wear the most comfortable shoes you can have, and some that you can also interchange with outfits. Again, so you are not carrying around two suitcases full of shoes. Try and keep taking makeup, hair products, (now most hotels have hair dryers and ironing boards), so find out what they do have so you don't have to carry extra items. Find a way that you can do your makeup nicely, but fairly quickly. I tend to carry again every piece of make up product I have, and I am too overloaded and probably don't use it anyway. If you have medications, always have them in their bottles, labeled, and if it is something you must keep refrigerated, be sure to ask for a fridge, or make sure you can get one if staying at a hotel, and also like my medication came with a freezer bag to freeze the solution in, and put my medication in there. It will last a good deal of time, then you can re-freeze it when you get to your destination. I know many guys are not for "stopping" if they are driving on a vacation and so forth. But, just put your foot down, whether a spouse, friend or whomever, and take those bathroom breaks, coffee, soft drink, eating breaks. Don't overdo as I said above being confined for way too long and not getting out if at all possible. Tag luggage well. Plus, if you do have "joint problems" and are flying. Request a wheelchair with an attendant to help you through the maze at the airport. Last year I took that suggestion when I flew to D.C! That was the best thing I could have done. I never would have made it all alone, with luggage etc and walking myself. Having that wheelchair really saved my life. Don't be embarrassed, I decided not to be. I would do it again, if I travel by plane.

Sunday, November 2, 2014

Medicare Advantage Plans, Medicare, Supplements, & Health Insurance

I realize many of us are probably on disability of some kind. Those of us that have been chronically ill, for way too many years, have finally had to "give up" some awesome jobs, to get only a "fraction" of the benefits and salaries we once had.

Yet, chronic illness, whether autoimmune, CFS, FM or many other diseases, syndromes and illnesses, brought many of us to the place of decision... to give up a job and go on disability.

Well, in some states and TX is ONE of them, if you are UNDER the age of 62 I believe it is, and you have Medicare, they would not allow you to just purchase a "Medicare" Supplement. You HAVE TO get a Medicare Advantage Plan. Of which, there are not be a very few of these types of plans. With the "hatching" of Obama's health care plans, most of which Congress, as I understand it, you WILL BE able to purchase a "Medicare Supplement" if you so choose. The point of that is though, they are MORE EXPENSIVE than getting into a Medicare Advantage Plan. Some of the Advantage Plans do not even charge ANY Premiums. But, there are some doctors who may not take them, or you may have to get some PA's (Pre-authorizations) by your physician on certain items, or possibly you may have a medication, that may require "step therapy", where you try certain meds first before you go to one the doctor recommends for you. Although all of that is going on, I do know several bills have already went through Congress to change those issues.

Well, I've had Humana - their Medicare Advantage Plan now for about 5 years and for the first several years I was quite satisfied. Them seemed to have been over the past 3 years getting slower and slower to process claims, making doctors wait to get paid, which of course is going over about like a lead balloon. So, like my own PCP, who had now decided as of Jan 2015 to STOP taking my Humana Plan! Well, this is the doctor WHO FIRST DIAGNOSED MY LUPUS! Plus he is the one who takes care of my Lupus, taking care of my flares, and medications. Even though we have been with him from almost Day 1 he was my physician, and I am trying to get him "Grandfather" me in due to the Lupus situation. Which I know can be done, especially due to the Lupus, because they did it with another physician for me on my pain doctor, who takes care of my pump.

But, when I started checking around, I've found out that I maybe doing a smart thing by changing over to the AARP "Sponsored" United Heathcare Medicare Advantage Plan. AFter researching it over about 3 hours yesterday,  I began to see more benefits ALL of my doctors take the Plan, all of my medications are in their database, and say that they take them... it does not cost the 49.00 a month, plus they give you some basic dental and eye coverage and for something like 30.00 or a little more you can get premium dental coverage.... anyway, if any of you have the plan, I would love to hear from you.

I shall post more tomorrow... I am worn out for some odd reason...

So, I think I may join my two pups and my husband on the sofa to watch the rest of the ballgame that is on

(A bit more from Facebook)

Well, if any of your have a Medicare Advantage Plan, and want to share how you feel, please I would love to know. I right now have Humana Gold Choice, and I have found out that MORE of my doctors and my medications will be covered under "United Healthcare Medicare Advantage Plan" for 2015. I spent a couple of hours yesterday checking all of my doctors and my medications through the site, and doctors that are going to "DROP" the Humana MAP in 2015 ARE going to continue with United Healthcare HMO Medicare Advantage Plan... I used to be extremely concerned about "HMO's" when they first appeared on the Horizon. They have a very bad rap to the entire insurance industry as far as health wise. But, now with the Medicare Advantage Plans more doctors in my area and my own personal doctors are covered... where they as I said as dropping Humana. Even the specialist that did my neck and reverse shoulder replacement take the United Healthcare plan, and he had dropped Humana over a year ago, and if I needed to see him I would have had to pay something like 30% or maybe even 40% of the visit charges!!!! So, if any of you have an opinion... likes, dislikes and so forth PLEASE either share here, or message me if you wish, or even email me at or I am thinking about changing both myself and my Mom over to this other one. AND to BOOT Nationwide UPPED my insurance and I just got through getting a new quote, which is over 500.00!!!!! a YEAR cheaper that who I have now... I am so pissed.. they PROMISED ME when I had to get the new car, my monthly premium would only be about 15-20 a month higher... BULL they almost DOUBLED their premium!!! I also found out that since Jim is NOT able to drive at all, and may not be able to for a long, long time if ever. So I DO NOT have to keep him on my policy for now, until he can drive again. Talk about a bunch of money hungry greedy asses... pardon my French! You have to watch your back, front and sides, because they will "stab" you any way they can.... corporate GREED!!!!