When the Physicians Allow You to Hurt Like Hell - and play this "hurry up and wait" Ordeal - Intractable Pain....

I did not finish this BEFORE leaving the page yesterday, so everything I wrote after this initial post was lost. I had asked if anyone had one of these "discograms".... and if so was it as bad as what I am reading? It just seems like this is not a test to take lightly. Plus you may end up in worse pain than you already are. I went to my Orthopedic surgeon this week. He was the one that actually put my new right shoulder in and then done my 4 level neck surgery about two years ago. As awesome of a SURGEON AND DOCTOR as he is, he "patient repoire" SUCKS!! He "hates" an educated patient. I had written before that him and I have gotten into it, before he did my neck surgery. I had given him my own thoughts after doing a great deal of research, even on the "reverse shoulder replacement" and he just didn't appreciate "me" a layman, even attempting to let him know my thoughts on the situation. He basically told me I was "stupid".... and later on, after the surgeries were done and MOST OF WHAT I SAID, was TRUE about my situation, he had in his own weird way had to 'APOLOGIZE" for making it sound like I was stupid. I never got a total I am sorry, or apology, but in his own way, he kind of smoothed everything over. Anyway now I've found more information on "sacroiliitis.... that sounds also more like what is going on with me and my very lower back, almost at my tailbone, and then into both hips and traveling at times down to my knees.... I just did some research on it, after a doctor in CA had "tweeted" me about what I posted about my lower back and hip pain... I found out this issue often is looked over, and the doctors "miss" that this is the issue, and blame it on a lumbar spine thing instead. Well, as I've told both doctors now, I feel I have two issues.... maybe my very lowest lumbar vertebra and my S-1 -S-2 have issues.... BUT there is something going on with my hips themselves, or another issue causing the severe hip pain. He had the audacity to tell me that the severe pain I was having in my hips, no way could be caused by bursitis... or the like... which is bull... I KNOW I've had hip bursitis several times and it hurts like hell!!! Now here I sit, in fact I just tried the very "test" this doctor said to try in order to see if this is possibly this sacroiliitis or not. And both sides put me almost in a scream to try and "test" to see if that is the cause. So, now here I am NOT gotten any relief and in fact, I am WORSE TODAY!!! And I don't see my pain doctor until next Thursday. I am in tears with severe pain. It matters not if I sit, stand, walk... right now the sitting is the worst. But, if I go out and walk a bit, then it also hits me like a razor sharp ball of fire into my very low buttocks, and hips, then down the sides of both legs.... I cannot take much more of this crap.... I am almost to the place of intractable pain again..... Why is it, no matter how badly we hurt, it is always this "hurry up and wait" game with physicians????
I've done enough research through out all of my chronic illness and pain issues now for so many years, I could almost be a doctor myself... or a pretty good researcher....

Yet, this is beginning to be the end of how much I can take. I realize ANY of us are in all types of pain. Often we are in such an overload of it, we would do just about any and everything to stop it.

What do you do? We know that going to an ER with "chronic pain' is just about like peeing out of the back of a moving truck bed. We know that most of our physicians, want to do a billion dollars worth of tests, scans, injections, treatments, and all or none may work or not work. I have said over and over again, that no matter where they have ever done "CT Scans", or MRi's, EMG's, EEG's.... all types of nerve tests... blood work. and yes there is some thing that show up. Yet, only when a surgeon FINALLY GOES IN - that is when they see JUST HOW BADLY MY JOINTS ARE SCREWED UP!

I've been told that by several of my physicians over the years. So, again, I will repeat, since it is worth repeating, TESTS DO NOT ALWAYS mean they are TRUE AND CORRECT! Tests are usually as good as the person doing them, and then whomever does the reading of them...

A very good example just happened to me this week. I had a CT can about 4 weeks ago, on my lumbar spine. It did show some problems in my lumbar spine, and although not just HUGE issues, my pain doctor said it could be enough to cause the pain I am having.

I go to my Orthopedic Surgeon this week. He was "supposed" to have a copy of the CT Scan. Somehow, between me going into that building, and seeing him in his office, my CT Scan results suddenly disappeared. I KNOW it was there with the paperwork I brought in. I saw it, and I said it twice or three times... his office somewhere lost it, put it in another chart or something. BUT, He did DO regular X-Rays on my lower lumbar spine and hips. He could tell me MORE by regular X-rays about my lumbar spine, and so forth THAN THE CT SCAN EVEN WAS SHOWING... and He had NOT even seen the scan. So, that just goes to show, with a simple couple of X-rays, a physician that KNOWS what he is looking for, can sometimes find something before ordering other very expensive, more invasive tests! I thought he had been reading the CT Scan. Then he mentioned about possibly having one done. I said well I just had one 4 weeks ago and I brought it in with the rest of that paperwork. Of course NO he had not seen it, but it did see the problems. He began to tell me that due to the extreme amount of pain I was in, there was no way that my hips could cause the pain. I say BULL! When I was this bad before, my hips were injected into the bursa with corticosteroid and it worked, two times at least. 

Anyway, it went on to prove to me, in all honesty, when a proper physician sees some tests such as this plain X-Ray.... they can go by that and what the patient says, rather than order $1,000.00's of dollars worth of tests, that if not read correctly would not show how bad it really was.

So, I have tried just about any and everything to "keep my mind" off the pain... between baking, writing, doing emails, reading and so on... nothing is helping. Here it is Friday afternoon, and I have another week to put up with this mess.....

Could I scream????!!!!! YOU BET I COULD!!!!!!!!!

"Fitness Friday" - WEGO Health Writer's Challenge for April 24th, 2015

Oddly enough here I sit writing when I actually am supposed to be out walking with my spouse! Due to all of his health issues, pain and so forth from the severe accident a year ago last month, it has taken him a very long time, well a year, to get to the place he feels he CAN somewhat take a walk. And the thing is before his accident I walked daily, 7 days a week, at least a mile. I walked my drive way back and forth every morning, rain, shine, just not in the cold... joints and bones HATE the cold weather.

Now, I had for various reasons almost stopped my "daily routine" of exercise, walking, and riding an elliptical when the weather does not allow me outside... Between all of my own heath issues, the long drawn out process (a year also, really more) to FINALLY have MY DENTURES and THE LOWER ONES ARE REALLY ANCHORED down NOW!!! What a miracle.  I thought that day may never come. In fact, I was just in my dentists office today. I had some issues with some of the material he had used when making the little places in the denture fit over the little mini implanted posts. So, I went in and he fixed that for me...

He did say all looks very well. That he could see I was taking care of the posts inside my jawbone, along with the dentures. So, he was so pleased with that. Gosh, I should be ELATED! After over $12,000.00 worth of work, plus blood, sweat and some tears They should be make out of gold, platinum and "precious stones"... LOL! I guess that would weigh me down so much, I would not be able to open my mouth, OR worse I would NEVER be able to shut it!!! As if I don't talk enough to drive a preacher to drink, Lord knows I don't need anything to make me keep my mouth open anymore than it already is.

So, my own exercise routine kind of went astray for a bit. I say that but in a way, I have been almost getting MORE exercise daily between shopping, cleaning, cooking, laundry, vacuuming, sweeping, dusting, and as that list continues on and on.... Days like when I vacuum then "shampoo" my carpets. They are not wall to wall, we have hardwood floors, but our huge area rugs in three of our rooms take a great deal of elbow grease to clean them. Well, I like to go over them twice, if possible. But, the last two times I confess I only made it once on them.

Anyway, I consider things like laundry, making the bed, chasing after our dogs, and cleaning up after them every day, all of my pulling weeds, tending to about 80 houseplants, that now need even more care because they are outside for the Spring and Summer. Still that means everyday watering... thus that is a workout in itself.

I will say since my husband began his regime of daily walking. He goes out about 4 to 5 times daily, and makes several laps around the driveway. I usually go out and do the same with him. Plus, I am beginning my own walking habit daily again since this weather is beginning to be warmer, yet not too warm.

I do some stretching exercises, and wished there were many more things I could do, like I used to be able to. As with many types of chronic illnesses, especially autoimmune illnesses that tend to strike you in the joints pretty often, there are many things I could do, yet no longer are feasible. I was never very "Athletic". But, about the time I turned 21, I wanted to be in better health, look better, and be able to wear "cute" clothes back then. I had a tiny bit of an issue with my weight as a teenager. I was never "obese", but I had about 20 pounds on me, right after my son was born. I was determined to shed ALL of the weight (which was about 20 pounds) that I had gained in the pregnancy. Then I also wanted to drop another 10 pounds or a bit more, in order to just look good. Not too thin, but to get to where I felt "good" about my own self, when I looked in the mirror. And that became a way of life for me. I walked at least 5 miles a day, took aerobics classes a couple times a week. Back then I did all of the lawn work, mowing, and everything in between. That was in addition to a full time job, two kids, and I at that time was going to college at night to hope to have at least an Associates Degree. Anyway, up until 2007 when my joints that were already giving me problems began to get so worn and I was in so much pain, I finally had to have both knees replaces, along with shoulder,
and other joint issues, that kept me from snow skiing, now I am really not supposed to mow, but I sure have been thinking about trying lately. Also at the time I was walking so much, and watched every bite of food that went into body. They used to tell the waiter or waitress in restaurant, to bring me a "head of lettuce" and a bottle of fat free Ranch Dressing and all would be fine!

So, my main exercise program now is to do my walking daily. Then I also take my chores and errands, and when possible I spread them out, so that every day I have something I could be doing that requires a bit more work. Whether that be the laundry, or vacuuming, shampooing carpets. I have LOTS of weed pulling outside to do now. Along with caring for all of my other plants and flowers  I also try to make my way around the market, or a big store like "Wally world" almost a "workout". By making sure I hit many isles, and try to make the most out of all of those steps too.

One of the "largest" work outs I get, unfortunately, I don't get to go that much is walking around the biggest Casino's in the world - the Winstar, in Oklahoma. Talk about getting your miles in. If I lived closer, I would just go there several times a week, just to walk and get so much exercise. I wouldn't even gamble, it would be just the walking all over that probably estimating 5 miles from one end all the way to the other.


I wished I could say I had this fabulous gym that I went to, and done Pilates each week and so forth. But, I must stick with my "fast paced walking" along with all of my daily chores and errands as my "exercise" to stay fit.

As it stands, between my same old walking, and housework, yard work errands, this is my "method of madness" when it comes to exercise

#HAWMC

WEGO Writer's Challenge Month April 23, 2015 - "Our Choice" of what to Write About

I have a smile as I start this. With WEGO allowing us a "write about what you you choose today" could possibly be a very lengthy readers challenge!

As I always warn people, I don't think I am even capable of writing anything "short". Even my emails can consist of enough words to be a "Novella" at times. That is the "writer" in me. Some people have "bugs" in them... I have "writer" and "voice" within my nature. The "bug" thing was to be a "ding" from that show that was on about all of the different "creatures" people had picked up, and then got very ill due to them. From fleas, deer ticks, to all kinds of worms, and so forth. That show was eery, but also interesting.

Anyway, as I mull it around in my mind what subject I may like to talk about, one item that tends to comes up in my everyday life is, "loyalty". When I say loyalty that could mean anything from being a "loyal" customer to a department store, to a loyal friend.

I was raised "old school" I guess you may call it. My Dad taught me (he was born in 1923 and lived a bit of what he remembered through the Great Depression), although he was very young; that everyone gets their commendations for being truthful, honest, loyal, committed, and to keep their word. On jobs, my Dad first of all was not all that thrilled about me having to work when I was young and my kids small. He was so totally raised in such a different time frame, that women did for the most part stay at home, and did all of those things, and men earned the paycheck and took care of bills.

Well, we all know that as "great" and fantastic is that may sound, for the most part, if you have a family, it takes two and sometimes MORE than to put kids through school, feed everyone, make mortgage payments, car payments, and unless you are fortunate enough, you never have "cash" to buy a car outright. You usually don't have "cash" to do many things for your home, your kids, and family outright, because everywhere we turn, things are so much more expensive. Cars (new) are no longer $2,000.00 cash. Heck you can barely use that for a down payment. If you are lucky, it will be that, but if not, you can expect more.

Same way with homes. My parents paid $50.00 a MONTH for their tiny 2 bedroom home, that included taxes and insurance for 30 YEARS. I am talking about a home that is barely 1,000 square feet. OF course they paid that off many, many years ago. My Mom still lives in that home also.

So, the idea of a "small town" everyone knows everyone, and used to provide a running tab at a local store that you paid at the end of the week. Or the small town, you got an awesome deal on local items due to the "Mom and Pop" stores that did line our city streets. Shamefully most of those are gone. Unless they have really worked to KEEP up a "self-owned" store; they have been overtaken by the HUGE "one stop shops" of these last several decades.

So, onto what I feel my post today is all about. Not long ago I had a situation where I felt that I needed to "honor" a particular group and my own "loyalty" to me, was to make sure I did all I could to promote things for these people. Well, I was asked some questions, and due to my background of feeling like I needed to remain loyal to one, the questions asked from another seemed to be "fishing for me" to use the first event to also "help promote" the 2nd event.

Well, I guess that is where I see things a bit differently than what happens in this time of life. I was told that it was not that I was being "not loyal" to first first event, if I used it to gain information, and "promote" at the same time another event. I felt uncomfortable with this, because to me, I was "using" one to help the other.

I was then told, that is was all a part of "networking". In other words, using "resources" from one place, whether a job, an event, a group or whatever, using your information from one to help the 2nd was "okay" and not "cheating" your original group you were doing things for.

I guess  my "idea" is that for instance, I was working at a women's clothing store. I had been an employee for a few years, and I was "loyal" to them. I felt that was the proper thing to do. But, later down the line, I was approached by another women's clothing store, that would be a "rival" to where I worked. They asked me to send some clients there way by telling those who come into where I work, that they could go over to the "other" store and pay less, or get a discount, or something of the sort. Or say I was "moonlighting" at a competitors store, while I was supposed to be supporting who I worked for.

Those are kind of what I am talking about. I consider "networking" a tool used let's say by several organizations that do similar things. Maybe they are both in the place of "research" when it comes to a new stomach bug, or a new medication. If "they" as companies decide to "combine their efforts", then to me that is fine. It is on the "up and up", the Boards of both will determine all of what will happen, thus that is great and dandy.

But, if one or two employees from one place, go over to a competitor, and give out vital information about themselves to the rival, or in any way try and "get their foot in the door" by having someone who works there do it for them, to me that is NOT networking. It is just not correct. I feel it is something that if you cannot be "loyal" as a representative, then you should not be there at all. No one should "feel" even say best friends.... there are 3 of them. One tells the middle one about a certain free item, or better buy, or tells them that the "3rd" friends information could be used to help the other... to me that is just poor character, and no one should ever be asked in any shape or form, whether you volunteer, whether you work somewhere, any thing where it involves something helping the "rival" then to me that is just not how I was brought up. You GET MERIT for a job well done! You get where you are destined by being loyal, upfront, trustworthy, and not "back stabbing" someone else per'se.

Now I realize with this nation and our world in such a horrid mess all around, that these types of activities go on daily. Whether it be a "news" station trying to one up another, or a clothing retailer trying to gather inside information about a rival by asking someone to do the "snooping" around etc.


There are usually at least "two" sides to every story, and usually more than two. So, what one person deems, "networking" even though they may not have really used the entire truthful way to obtain a "foot in the door" or not, everyone sees things in a different light.


This is NOT about any one situation that has involved myself, but my daughter has ran into in even on a "school level" as far as her kids go. She sees it all the time, those who sometimes "get their way" and they are not as qualified as another child, then hard feelings develop.

If this does not make sense, blame it on my Lupus/RA/Sjogrens Brain fog!!!  This has came to mind to me on several occasions and I really have never written my opinion on the subject..

There is no "right or wrong" here... just different beliefs, and often times it totally has to do with the "time frame" in life, how you were raised, and so on....

#HAWMC

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

https://creakyjoints.org[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..

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.

#HAWMC

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others. 

#HAWMC

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.

#HAWMC - WEGO Health Writer's Challenge!

Stress Awareness Month - WEGO Health #HAWMC Writer's Challenge April 19th 2015

Definitely a great question for ALL of us that have to contend with a stressed filled, everywhere you look and feel world! Daily stress producing items are all around us. Whether you are "chronically ill or in chronic pain" or not, the news and medical world tells us that our daily stress levels are off the charts. This also means that stress effects us in so many different ways, especially when it comes to your physical and mental health.

Then you take all of that into consideration, jobs, families, travel, homes, cars, kids, and just what we see in the news daily, is enough to cause us an insurmountable bunch of stress. We have known for years that stress contributes to heart problems, it definitely effects our immune systems, allowing things that normally not make us ill, to sometimes makes us more ill than we think.

Now let's add in doctors visits, 15 or more medications a day, feeling overwhelmed already, yet due to chronic illness and the pain that comes along with it, the stress levels can be way over the top of the glass, and pouring down all around us in a puddle. Just having to deal with a drive to a doctor in Dallas, maybe two in a weeks time. Making sure all of my medications are filled properly, and with me so I don't miss any. Not feeling well some days, either with some type of "flare"; whether Rheumatoid Arthritis, Lupus, Sjogren's, and the list continues. Add those onto trying to keep a job, do errands, take care of a home, a yard, a car, buy groceries and prepare meals, do laundry, and all of the 1001 things that can pop up at any moment, to distract us from what else we are doing. Then our bodies all too often "revolt". So, now I am dealing with a huge amount of fatigue, severe headaches, my hips and lower back hurting, perhaps like last week for me, having the procedure done on Thursday - even though a "good procedure" to hopefully help reduce the horrid pain in my lower back, hips and legs, was still "stress". So I get up on Friday, with bright pink cheeks, feeling like a train had run over me, seeing everything piling up I need to do, and guess what, here is a flare. I would "assume" a Lupus flare, due to the pink hot cheeks and nose. That all too familiar "Lupus "The Wolf" Mask" we get when one of those comes on

So, I've spent over a week at doctors offices, having that procedure done, then coming home to know I am behind on everything. Now I feel lousy, the weather brings on a new set of stress on it own, and I now have a very low potassium situation they discovered last week when I had the Transforminal Epidural Steroid Injection done in my lumbar spine. My potassium was at an "dangerous" low. Most of the time at what mine was, and they even checked it twice, I probably should be getting IV Potassium to try and get it back up a bit, then follow up with pills. But, I didn't hear from my PCP even after calling at 9:00 A< Friday. So, I followed up with my Cardiologist, who immediately called in a script, told me to take two of them for two days, then one a day, and come in on next Friday so they can check the levels again.

Now, after all that being said, "How do I, did I, deal with all of the stress"? My first way to "deal" with stress is "listing" and writing down, what is "MOST" important to get done quickly, and what may be able to wait a day or two? That helps me a great deal, to literally "write down" a list, and prioritize things. Then I take stock in how I feel mentally and physically. If I am feeling very lousy, then I know I need to do absolutely what has to be done, and save others for later, when I feel better.

From there, I allow "time for me". Even though my to do list might be long, I still need to be able to either go outside, and do my walking. I enjoy baking. So, for me going into the kitchen and making a pie, cake, cookies, or whatever I feel like I might enjoy baking, I do that. There are days, that I may have to do one or two things, then sit down at the computer and write, or take an hour to watch a movie with my two pups. I also very often find if I go over to my Mom's, and just spend some times away, where I can talk, and "gripe" if I want to, Being able to express my stress is critical. If I can't write it down, or say it, or find some type of avenue to be able to "purge" some of the bad stress, then I really find myself unable to get much of anything done. I am too wrapped up in what I CAN'T, thus what I can does not come to me, when I don't just take that walk, talk to my Mom, write on my book, or post on my blog. Summer as I had mentioned in another blog post earlier in the week, tends to help. I can open up my home, and let the fresh air in, get some light streaming in, and I have a "renewed" feeling, that tends to be a great deal stress free.

Being ill with so many of these diseases, syndromes, and such do add a HUGE amount of stress in my life, but my husband, Mom, and others can "feel" that tension in the air. So, between all of us we try to keep me in check with stress. It may mean a day trip to Oklahoma and the Casino. Which in saying that, we are LONG overdue to go. It has been several months, possibly about 4 or more months since Mom and I made that 2 hour journey into "freedom" for a few hours at least.

Just a day trip away from it all, is an incredible way for me to get back to the matters at hand daily, and lead my body and brain into a new perspective.

Writing has always, and will always be one of my biggest ways, that I can "purge" out the stress, remain half sane hopefully, and try to carry on up that "mountain" always reaching out to attain a goal.

#HAWMC

"A Tagline" for my patient experience! WEGO Health Wtiters Challengs April 17, 2015! #HAWMC

My very first thought is exactly what the "title" of my upcoming book is:

"It's Not ME! It's The Disease    "Stupid"!

Well, the first thought was to add the word for description   "Stupid" at the very end. Of course I surely want people to read my book, so the very last thing I would want to do is offend someone with the title.

Of course, everyone that totally "gets" the brain fog, the lethargic fatigue, the times when you are just too ill to put makeup on to go to the market, and all of the other "times" that come with these insidiously mostly invisible diseases.

This is due to the fact, that we have SO MANY that do NOT understand any type of what we call "invisible" illnesses. 

There are times that either "brain fog" causes me not to be able... to probably makes sense to some, yet I feel they just don't "get it!"

Sometimes I would love to wear something around my neck that says "I TRULY AM NOT WELL!! Just because I may "look okay" and run out to the store, yet at home I look like hell! And there are days I DO park in the handicapped sign zone, and sometimes I don't. Yet, I have those that "stare" at me, as soon as I am getting out of my car. They think if I am not on crutches, a walker, cane, or almost crawling into the market, then why would I have that sign?

When I am upset, often it is due to the pain, physical, mental and emotional. So, those that don't "know" me, probably due to NOT listening or seeing what they should, they are mad because I don't go out a certain time, or they wonder why I can't mow my yard.

There are all kinds of things that go into what we call "Invisible Illnesses and Pain". There are days I am in horrendous pain, yet something may have to get done, so yes I go out. Just because I am out, don't think I am "better".... with anyone you know, that has illnesses such as Lupus, Sjogren's, RA, MS, FM, Chronic other back disorders, migraines, chronic pain.... there are MANY of us that walk thru life, and MANY people out there that don't "see" it, yet even with the "invisible" there are symptoms and signs to watch out for.


I now have to make lists, to remember my lists, so I don't forget my list! One day I maybe hand washing my car, the next I maybe on the sofa unable to move. Or Worse, one moment I can "appear" well, and within hours be so severely ill, that I have to go to the Emergency Room.

So, if there was a "tag line" that I could wear, use, put it on my door, or in my car, would be   - "It's NOT ME!  It's the DISEASE!!   - maybe or maybe not with the "stupid"

Also, one other that truly resonates with me is::

  "Life's Too Short! Eat Dessert FIRST!

 

 

WEGO HEALTH Writer's Challenge for April 2015!  "Your Tagline"...

What are 3 Things I am so looking forward to doing this Summer! WEGO Writers Challenge - #HAWMC April 18th, 2015

First and foremost, wearing shorts, sandals and cute Short Sleeved Shirts and Blouses! That may sound silly, but after this cold weather, with always jeans, long sleeved shirts, boots, socks, coats, and so on, I am so ready to NOT to have to put all of those on for a while. Plus I have a few new Summer tops I have bought, so I am ready to take those for a "spin"!

The 2nd activity that really seems to help me physically, mentally and emotionally is being able to get out and walk every day. That becomes my main priority and a great warm weather habit for me. So, I've already been out and about doing some of that, but with the hips and back hurting so badly, I've not been able to do as much as I want. Hopefully after the Transforminal Epidural Steroid Injection into my L-5 space vertebra, and then both hips getting injected next week, that will put me back into the physical goodness I need in order to really get out there and pound the pavement, or usually laps around a local park or my own driveway also!

I love having lots of flowers, plants, trees, and I bring almost ALL of my "indoor plants" outside for the Summer. I can usually take them out as soon as we know there will be no more surprise freezes. Then they can bask in the Summer warmth and sunshine, up until sometimes September. It depends on when our cooler weather hits, but they LOVE being outside on my front porch. Now I am talking about 70 plants or MORE that I have in my house in the winter, then they all but a few go outside in the spring and summer!!! I always giggle when I see the little tags that "NASA" puts on houseplants now when you buy them. It tells you how many "plants" per square feet in your home is best for the air. Believe me, my house is tiny, so I have way MORE than enough to "clear" the air in my home. I get bummed because there are many things that I used to love to do outside, that due to the Lupus, RA, joint replacements, Sjogren's and other health problems, my ability to do a great deal of pushing a lawn mower, doing the weed eating, bending too much, even raking, hoeing, and so much I loved to do, now is no longer feasible or advisable by my physicians. But, I can certainly do other things that are not as strenueos to the body as others.

A third thing, that I LOVE to do is put my Hummingbird Feeders out, and we both love to "bird watch" all Summer long! We have SO MANY different types of birds, and we have watched them and know so many of their "habits", why they do things a certain way, and really have an awesome time all spring, summer and into fall watching the birds. Of course the Bluejay? is the Texas "bird". But, we have loads of red birds, wrens of different kinds, finches, woodpeckers, mockingbirds, doves, black birds, and Purple Martins. There are more, but of course I can't name all. We have one pair of very "yellow" birds. They come in every year at the same time. They stay together, and usually only nest in a very thick "cedar" tree across the street. In fact, it is so "sticky" with sap, plus it has such pointed and scratchy leaves, that nothing wants to go into it, but them. I think they use that particular tree because cats, not even other birds will mess them there. We think they are a type of finch, but we find it odd that there seems to be only one pair, that come back each year. So, bird watching, we now look for the nests, and have found several nests that we've watched the little ones hatch, and how the "parents" train them and get them out of the nest within weeks. It is amazing.

I like to be able to "open up" my house and have the fresh smell of green grass just mowed, hear the birds, and just enjoy all of nature that I can soak up this time of year. I am still very much a "people" watcher, so I enjoy just watching people and see what they maybe buying or wearing this time of year. It is very interesting to see the things that others buy, and then "guess" as to watch they maybe doing or where they maybe going. When you see all of the ice chests, chips, charcoal, buns, cokes, beer and so forth, usually a picnic, a visit to one of our lakes in Texas, or on a vacation with their family.

This is also the time of the year, that I want to "rid and shed" my old self, and not just be able to put on summer clothes, but to take an "inventory" over my own home. I like to do away with things that I realize I have not used in a long time, or know for a fact just need to be done away with. As I have gotten a bit older, and as time has gone by with the chronic illnesses, pain, age part that I feel I am no longer able to take care of, like lots of knick-nacks around the house, some old clothes that we feel we just don't want to let go of, but to do an "inventory" of my home, and my life. Then I feel it is time to "spring/summer clean" out my closets, rest of the house; along with some of the "cobwebs in my mind", and from my body! Even though we always have that time of "closure" and "renewal" at the first of every New Year, to me spring and summer are also a time for renewal, to take out what we feel is "weighing" us down, and lighten up the load in our homes, minds and bodies.

I know that as I mentioned above, there are many things I used to love to do inside my home and outside, that I can no longer do, because of my chronic illnesses, joint issues, and so forth. But, I DO have MANY things I CAN still do, to take stock and move forward!

So, there are MANY things I love to do this time of year! I have to "pick and choose" now due to illnesses, and chronic pain. But, I still try my very best not to miss out on what I love the most, as I've written about above!

Happy Summer to ALL!!!

#HAWMC - WEGO Writer's Challenge!