Winter Weather and the Effects (Negative) on Bones, Joints, Pain, and Chronic Pain - Holidays, stress, and coping when Chronic Pain andor Illness Abound

Morning All! I thank each of you for "sticking" around, even though I have been somewhat absent over the past several days. I am still dealing with the "wounds" on both thighs, (abscesses) and finally see a "wound care specialist" tomorrow on Thursday. It means a drive to Dallas, but thankfully the weather has turned around, and we are supposed to have a few sunny days! I certainly hope so! The cold, damp, rainy weather does more to some than dampen their spirits, it can cause any type of bone, joint, arthritic, or chronic pain problem to escalate horrifically.

I have been dealing with of course NOT having my internal pain pump, which is already bad enough. Even with strong pain medication orally, they can't compete with the medication given from the pump. Then you add on top of that, all of the pain, stiffness and swelling from the Lupus, RA, other arthritic issues, and joint problems, and believe me, it causes a world of hurt, over and above what pain I already have.

I've read several articles lately on chronic pain. For the most part, I've been "aware" of just how badly weather has an effect on pain since I was 17 years old. Long before doctors would say "yes" definitely. I first noticed it with migraines. I was plagued with those for all of my adult life. In fact, they were much worse, led to me losing several jobs, because at the time there was no real answer for medications, for even why I had them, and facts that we now know about all types of migraines, were just not around back then. I also began to have joint problems, that even needed surgery by the time I was 21. After a severe knee injury that led to me having extensive knee surgery at the age of 15, and then another surgery on that knee when I was 21, from there I was also plagued with many problems with joints. I had several arthroscopic joint surgeries well before I was diagnosed with RA and Lupus.

I had an elbow, shoulder, and then another shoulder, wrist, and really needed another elbow surgery by the time I was 40. From there both knees has surgery several times, before finally having both of them replaced in 2007. In fact in 2007, that one year I went through 7 or 8 surgeries, related all to joints. Even the right shoulder, finally led to a total "reverse" shoulder surgery in 2011, and then cervical neck surgery, plus I face a lumbar/sacral surgery, that has been put off by other health problems.

But, I vividly remember how much worse my migraines, and then later joints would hurt when we had a huge weather change. I was in my doctors office many more times, or even in the emergency room with migraines when the weather "acted out".... a high humidity, very stormy weather, a drastic change from cold to hot, or hot to cold, sent me straight into more pain than I could deal with. At that time, there was little "medical proof" about the effects weather had on these types of health problems, but I cannot recall how many conversations I had with all of my doctors how about the weather had a dramatic effect on the pain level I would have.

Now, after many years, it has been proven with studies that it certainly does have a dramatic effect on the body, especially chronic pain and/or chronic illnesses. It is no different than when I had my 1st knee replacement, there are times, that "knee" hurts so badly, I would swear I never had surgery yet on it... but just like those who lose a limb and have "phantom limb pain" so is also true with those who have joint replacements. That is true for me with both knees, and my shoulder. There are times, especially during severe weather, that they hurt as they did before the replacements.

Holidays are upon us, and with the hundreds of thousands of us that suffer each and every day from some type of chronic illness, and/or chronic pain, holidays can prove to have a "mixed blessing"... when you have an illness such as an autoimmune illness, that already causes fatigue, and all types of symptoms, having a busy holiday schedule can definitely contribute to feeling even more fatigued, more exhausted, and the added stress often leads many of us to having bad flares, and even being hospitalized.

Holidays usually involve family. Like myself, with some of my family hours and hours away, that is sometimes the only time I get to see my daughter, and her family. So, we spend a great deal more time getting ready for family that is far off, or doing holiday baking, parties, and putting up decorations, planning meals, running and doing shopping, and all of the very things that can make holidays wonderful, but also make chronic illnesses and pain horrible in the process. We tend to not sleep as well, not eat as well, not take care of ourselves as well, and do way too many hours of overdoing it, thus leading to us feeling even worse than usual.

But, how do we find a "balance" when such times are upon us? That is a very difficult and almost at times impossible task... you can defer making a huge dinner, to going out to eat, you can order presents online, rather than running around 4 cities to find the right gifts. If you have a huge home, or are expecting a group to stay several days, rather than trying to do all of the cleaning and so forth, you could hire someone, or recruit others to help with those things. Or you could offer to help with a hotel room, or ask family well ahead of time if they would consider spending part of the time at your home, and then a day or two in a hotel. As difficult as that may seem, sometimes it is best for you and them. If you are too exhausted and overwrought in "taking care" of family and friends, then you are not able to "be there" in spirit and health to visit and enjoy the time together. With my home being so small, I just simply do not have the space for my 3 Grandkids, my daughter and her husband. When the kids were small they stayed a couple of times. But, after the kids getting older, and needing more space, a 2nd bathroom, and so on, they decided staying in a local motel here in our smI've made some adjustmall town was so much simpler for them and everyone. I realize that some may not have the finances to allow that, and other plans must be made. Yet, if you can at least take a portion of that off your shoulders, all can enjoy the time much better usually.

I know I have cooked many, many holiday dinners, all myself. I used to decorate every room, clean every speck of the home myself, and have all in perfection. But, as I began to have health problems, my "body" just became rivaled with fatigue, pain, and problems that do not allow me to do nearly as much as I used to. It is very difficult to contend with, and I surely know the guilt I feel even till this day about not being able to do what I used to... but you must accept those facts, and find new ways to enjoy family, take the burden off of everyone, so stress does not plague your enjoyment together.


I've made some "adjustments" already for the holidays for this year. Rather than try to get out of huge tree, and pull out all of the boxes in the attic with decorations, I "settled" for a smaller tree, that I put on my beautiful round table in the living room. I had many of my special ornaments and decorations in my camphor wood chest, so they were easy to get to. I took all of those out, and had plenty for the tree, plus used some of the other things to decorate the rest of the living room, as well as some in my office. No, it is not the huge tree I loved so much. But, it is a 4 foot tree. By the time I got the lights, and all of the special ornaments on it, and surrounded it by a few treasures around the house, it is simply beautiful. Plus this is the 1st time I can remember getting my tree up well before December 1st. I usually wait till the first week of December to put it up. But, I went ahead and bought the tree, and since I had it, I went ahead and spent a bit of time a couple of days finding my other stuff, and then decided to go ahead and put it all together. In fact, I just found my crystal candle holders, and got them all out and cleaned them, so I could get the candles in them with my candle rings. All of it things I had around the house. I need to buy a few more tapered candles, but I had 4, so that works until I am out sometimes later today to pick up a few more. Anyway, I have enjoyed the decorating this year almost more than some others. For one, because it is "different" but in a good way. For 2 I have not felt pressured to get it done, and have just taken my time, finding things to use from around my home. Even the tree skirt. I had some "quilted" white cotton, a piece I had in my sewing items. It is just big enough to make a perfect "tree skirt" and looks like snow, with the quilting and being white. So, I also have not spent a fortune to decorate. I did buy the new smaller tree, but other than that, I did buy a set of smaller lights yet even they were only like $2.00 at one of the local dollar stores, so I did not have to go into debt to have a wonderful tree and decor for myself and Bub's.

We are waiting to get our wonderful Christmas "miracle"! My hopes are that by Christmas we have a new fur-baby for our present this year! It seems perfect since Tazz, my Pug, who passed away a couple of months ago, was a Christmas present back in Seattle! She would be turning about 14 years old this month, around this time in fact! IT seems like yesterday we went to pick her out. I will never forget how she "bounced" up on the sofa and came running to me! There were still several brothers and sisters to pick from, but they put her up on the sofa, and she ran straight to my arms! I knew that instant she was my special gift! In fact, she is in her little locked cedar chest, with a prominent place under my Christmas tree right now. She shall always be my "greatest gift" as far as human gifts go... she lit up the room every time I walked in. But, Bub's and I have I think bonded even more since she passed away. We always had a "bond" but after both of us suffering through the loss of her, we seemed to grow even closer to one another. He is even more protective of me than he was, and he was always very watchful over me. So, I know both of us will be so thrilled to have a new addition to our home. It has not quite been "home" without Tazzy. Even though no other pup will ever take her place in my heart, I know she is happy, playing and will forevermore be a pup, and someday she will see me and run into my arms again, just like the very 1st time we saw each other! I painted her toenails that morning she passed away. The evening I picked her out, the lady painted a back toenail red, so I would know she was mine. So, I sent her to heaven with red toenails. I will know her without that, but I shall truly be so warmed to the core to see her run up and jump into my arms someday when I join her and my family members and friends in heaven.

Between the illnesses, the pain pump going out, the abscesses on each thigh, losing the trial from the accident, being "single" again without ever even expecting it, losing Tazzy so suddenly within 24 hours as I did, and trying to deal with Mom and her also having health issues, it seems 2015 has been another one of those very, very extremely tough years. I hope and pray that faith will lead me and my family, into a new, less stressed, better health time in 2016!

May somehow our nation and our world find peace and harmony!

And may each of us know and understand the true meaning of the Spirit of the Holiday Season...

With my love, respect, and may you find peace in your heart, and a well health filled 2016 also!

Feeling totally destroyed, Mad as Hell, and wondering WHY LIFE can be such a torment for some rather than a joy!

I've kept my mouth shut about some of the feelings I have about this entire ordeal of myself, and my Mom being not well, not well at all. I refuse to ask for help, because I know that it will NOT happen, thus I do all on my own, from fixing a lamp, to fixing my plumbing to hanging a new ceiling fan (which that one I have not done yet) I am living now with TWO severely infected places on each thigh, one of which had already been incised over 6 weeks ago and should be well. But, it has taken much longer, I guess just due to my immune system issues... then 2 weeks ago, after hearing a "weird" beeping, during one of our bad weather days, I found out my internal pain pump has a "motor stall" and I had to scramble to Dallas, to my pain docs office to meet a Rep from Medtronic, so they could turn the pump down to a "no flow" basically, and then I went in on Tuesday to see my doctor. Well, it seems on that Sunday before the pump restarted itself again. So, he turned it back to my normal rate of medications, BUT he messed up on my Bolus' that were supposed to be 1.001 every 8 hours and he put .1001, which is a huge difference. I left 2 messages, two days in a row, and I knew Friday the office was closed. So, I just kept taking my oral meds to supplement the difference, and about 9:06 AM Friday morning, the pump had another "motor stall".. so as I was about to call and leave a message that the thing had another motor stall, the nurse called about the bolus, well I stopped her, and told her we had more problems, than a bolus not right, and let her know what happened... this was in the middle of all of the horrible weather, rain, and I was not about to make a trip to Dallas for a 3rd time in a week, not in weather like that... luckily, one of the Medtronic Reps, drove all the way from Dallas, and came to the hospital here and met me to turn down the pump once again to mostly Off, no medication is being given basically, so again I can take the oral meds, and he was to "silence" the alarms, and yes they were until about an hour ago, and now for some reason, just like last Sunday, the "alarm" on the damned thing is going off again..... so I am not sure once again what is happening, because once he turned it to certain settings my own "PTM" that I use to check it and give myself the bolus' is not working. So, I have no clue what the "error message" is that it is giving.... Mom lost over 14 pounds in about 6 weeks, and I am still not having an easy time getting her to eat, and she is always confused about how to take her medication, no matter how many times I explain it, write it down, she even has a 7 day pill holder, but with the addition of a couple of new pills, she never gets it right... so I never know for sure if she is taking her medication, correctly, and when and as I said I have tried everything, from telling and explaining, to writing down the names, doses, and when to take it.... but none of that matters, she cannot get it right.... I have not even been able to go over there this weekend.... with both of these abscesses on my legs, and my pain pump stalled, I need to be close to home, plus the weather still sucks, it is cool, and cloudy, and dripping and I already feel like I have allergy mess like all of us since this rain came in and the weather changed so quickly..... but then the "trial" was supposed to be "next week" for the wreck Jim was in, in March 2014.. what a joke.... I cannot tell you what a freaking mess that entire thing is in, BUT I will tell you "how our lawyer feels" about me being sick..... after he spoke with me late Friday evening, and I told him ALL of what was going on, and he knew a part of it, because I had emailed him, but he did not know about the abscess stuff, because that had not happened yet... and his answer to me was, "Well, you KNOW you STAND TO LOSE a LOT OF MONEY if you do not testify!!!!!!!!! " and my comment back was ALL THE MONEY IN THE WORLD IS NOT WORTH MY HEALTH and what can I do with money if I DIE!? I am SO SICK OF THIS FREAKING TRIAL CRAP, AND IT IS A BUNCH OF CRAP! I wished i had never even been put into the "mix" of it all.... I stand to gain NOTHING ANYWAY, because, since we are divorcing, that means I am not "with him to help" so HE gains TWICE as much money since he will supposedly have to "hire" someone to take care of him.... and the lawyer gets all of a sudden 40%!!!!!!! I was told 30% in the beginning, which to me was too much, and now I know how he affords that huge, lavish, office on top of one of the largest buildings in Ft. Worth overlooking the entire city etc..... at 40% that does not leave MUCH for the injured party for sure.... I have kept quiet about this mess long enough.... I am SICK - MOM IS SICK, and I cannot even get my own church to put us on the prayer list! And it is funny HOW MUCH I HAVE GIVEN TO SO MANY because I wanted to, all types of help, information, and assistance, and YOU THINK ANYONE HAS ASKED IF I OR MOM NEED HELP??????? NO! So, the lawyer can KEEP his money, as I said if I am in a "Urn" or grave what the hell good is it to me?????? I have never "had money" and I never intended on "getting rich" off of an accident..... so they can take their money and shove it, because I wash my hands of it all..... the audacity of some to do and say what they do.... and furthermore, I want no "I am sorry" or it will get better crap either... I've heard that and it only GETS WORSE!!!!!!! Certainly NOT BETTER..... I do not think ANYONE UNDERSTANDS THE EXTENT of how serious my own health issues are at the moment, nor my Mom's.....

It is lie one day last week, I was looking at a newspaper online, probably from Corsicana. I happened to have seen an obituary about a woman from that area, and her, her husband and their entire family are very well known there. She had passed away, and I was trying to find how to get in touch with one of the sons.... he had helped me years ago, when I was having some really tough issues, and even came and took me out for my birthday in 2001, right after my heart attack. We went over to Waxahachie and ate and then he took me and bought me a box set of Stevie Nicks songs... that I have cherished and still have for years.... there were many times that I "hid" out there, when no one else "believed" what my "then jerk" of a husband was doing to me, and how much I felt threatened.... and him and I became "friends" and it was that, friends... he also had been through a tough divorce, had a "step-daughter" that totally made him almost hate kids, and I always felt I had a "safe haven" when I needed one.... even when he was not home, which he worked a lot, I could go if I needed to and stay..... I can still remember many times we spent listening to Brooks and Dunn, and several songs that totally "touched us" both at that time... and maybe.... just maybe if I had stayed in TX and not left for Seattle, something could have developed between us, but I left, it didn't... I come back and 10 years later, find myself again single....and then the irony hit.... I noticed in his Mom's Obituary it said something about she was "proceeded" in death by a son, and it was his name, I had to stop, blink and again, think gosh no, he was only about 3 years older than me, and even though he had a health issue, he actually had that under control, and was doing well.... but that was 10 years ago.... or a bit more.... actually longer than that, because I left TX, in October 2001 for Seattle.... and I did not return until Dec. 2005 and it is now 2015 so actually more like 13 or more years since our last conversation...... and then I do a search, and I find HIS OBITUARY! He passed away in 2012. I think... and I had no clue, have no idea why, how, if he got sick, or hurt, or what happened... my heart sunk... here was someone who honestly gave me the courage to get up, get out, and change my life, when everyone else thought I was the "one" with problems, and no one believed the other party had issues (until he wound up in prison, and is back again) - not even my own Dad believed me... he thought I was making it all up and I had the "problem"..... so, I was just at a loss, and trying to think of someone who might be able to tell me what happened... and there are a few people I could contact, but I am not sure I even want to "stir" that can of worms from BG....... so life can throw you a horrible curve ball, or MANY curve balls, and you never know when that ONE will be the "end"of your "earthly career"..... I am honestly MAD AS HELL right now - and normally the "hope" keeps me afloat, but at the moment I only see HURT and PAIN ahead, at 55 years old, my life totally sucks!

Life Ongoing and Fleeting, Memories of a Time that seems like a blink of an Eye ago, dealing with AI's, Lupus, RA, Friends or lack of them, & All we are thrown daily to contend with....

WOW! I bet a few of you are saying! It has been a long while since I posted so early. I used to be up by 5AM, and that all changed several months back. I began to stay up much later than I did, thus I find myself not getting up before the dawn appears. I am honestly not looking forward to cold weather. It at one time was almost my favorite time of year, especially around the 2-3 weeks of February. Not due to my birthday BUT that is when we always planned and went on our annual snow skiing trip... it happened to fall right around my birthday, and WOW, I planned for that all year long... before we even finished getting home good from one trip, I was already setting up a "Christmas fund" at the bank where I used to work, and that money was always for the trip & Christmas also. I watched the weather all the way up to that last moment, just thrilled to be going back to Wolf Creek Pass, and Pagosa Springs CO... and also Santa Fe NM... Some of my most incredible memories are wrapped around that time in my life and I would give anything to be able to go again... I am not so sure about the skiing anymore even though I would love to try once more... but that was long before knee replacements shoulder replacements, cervical neck surgery and autoimmune illnesses.... so it would also mean in order to snow ski, back to walking that 5 miles a day I did for the entire year before we went.... and even at that, it still wore me out to ski especially if we skied 4 days rather than 3... I did have several video's of us, we took a camera and taped us a couple of years, and right now I am not even sure where those are... since then with all of the moving etc... they have been placed gosh knows where, but I still can replay each moment in my mind... my favorite part which was like a half open pipe, the sides way high up so when I skied, I went up one side, down into the "pipe" and back up the other... everyone knew if I was difficult to find that was where I would be LOL....then there was the time, and I had a pair of NEON GREEN snow pants/snow suit - and it was a pretty sunny day and I had been headed through some trees, and as I made one last little jump, one of my skies decided to stay behind, so here I was sliding through the trees on my stomach flat and just laughing... some guy and his wife were behind me and saw it, and he yelled at me "Looks good from behind here"! OMG - His wife hit him.... LOL! another one of those "moments" that get etched in our minds, and something that I will never forget... like the outdoor hot tub and it snowing on you when your were in it, and the indoor pool we ran and got in as soon as we got out of the hot tub... and the place we ate breakfast each morning, where the Elk came came a hill on the other side of the road and we watched them each morning, or the Mexican Food place we ate at when we got back from skiing - and they would fix me a "hot toddy" because I would always come in with a sore throat... LOL!!!! and how Pagosa Spings (which was like "Hot Springs Arkansas) due to the hot springs there the entire town smelled like rotten eggs.... LOL... you just got used to it after a day or so... and it did not matter because.... I WAS SNOW SKIING! I could sit here and almost write a novelette about my experiences going skiing for many years there during my 30's I believe.... and why that came to mind this morning, I am not sure, maybe the Winter/Fall chill in the air, or the fact, that rather than think about ALL I need to get done, I would much rather think of just how incredible those years were for myself, friends and my kids even went a couple of times... that was when Amanda my daughter was probably about 8 or so and the first time I sent her for "lessons"... she came walking down the hill with one ski in her hand... and I thought she was hurt... no, but the tree she ran into was bruised and her ski broken! LOL! She decided she did not need lessons, so off she went on the "bunny slope" herself, ran into a tree and busted the boot off of her ski first rattle out of the box! Thank goodness they were rented and insured so we got a new one right away! :) Those years have come and gone, but the memories made will remain brightly lit in my mind forever.... (or I hope they will).... Lately, life has been nothing more than one big ball of knotted, tied up, strung out, a mess of a ball of thread... it seems everywhere I turn there is something I need to do, somewhere I need to be, or an errand to run, medication to pick up, and now I have to all a plumber today... I thought I had remedied my problem but I have not, thus now I plumber has to be called and I don't look forward to that... it does not take long for a bill to get large when you have to call in a professional... in all of my undertakings, as FINALLY I FIXED A LAMP that my Mom had and it quit working. It is a pretty lamp, nothing wrong but I knew the "socket" had gone bad in it... well I bought the kit, with even a new cord in it, just so I would make sure ALL was new... it took me about 5 days in all to figure it out, and even though it was not difficult, in my head I had a portion that I was seeing to be more difficult than it was... so on Friday, it dawned on me what I was doing wrong, and sure enough, I got it all together and working! So, my DIY skills can work still, sometimes it just takes longer than it used to... same way with anything now days... I find myself yesterday in need of needing to sweep well (Swiffer), then "Wet Swiffer" my hardwood floors and mop my kitchen... and then I needed to vacuum, dust, etc... BUT, it took me so long to just get the hardwood floors done, in between all of the other "little" things I had to do, that by the time I was ready to vacuum, it was already after 4PM, I had told Mom I would drop by an lite her heater again, so I had to stop, decide to vacuum "tomorrow" so today, and then I wondered why it took me so long to do those floors??? I used to have been able to clean the bathroom, do all of that vacuuming, dusting, mopping the hardwood flooring, and so on, and still have plenty of time... but not anymore... for one, my energy is not what it used to be... I am much slower about things now... I had not been to church in 2 Sundays to do being sick, so I wanted to make sure I went yesterday. So, even though I knew I would come home to "chores" I got dressed and went to church first...yet by the time I ran home, changed clothes, went and picked up a couple of things from 2 stores, got home, and done that cleaning, it was already 4PM! By the time I got over to Mom's, lit her heater, visited for a bit, and got home it was already almost 5:30 and I had no clue what I wanted to have for dinner... and Bub's was looking at me like, "Hey, you have to feed us!" LOL!!! I almost settled for PBJ Sandwich, but I had some leftovers I managed to warm up and add a bit to, so he and I had a good dinner.... I guess he did he was not really even wanting dessert later in the evening when we watched a movie! Now, once again it is Monday - another ONE OF THOSE! I am sure that sounds silly for someone who is disabled, and does not have to "leave home" for work any more... but you know, I still have as much if NOT MORE to do now, and a lot less energy to deal with it all... so "Monday" is also one of those "Mondays" for myself also... it is trash day, and the beginning of usually errands, doctors, meds, running, phone calls and "stuff" to take care of... and that is exactly right... I have a list on a smaller yellow pad BUT it is 2 PAGES long! So, just because I am no longer "employed" outside of the house, I still have a ton of stuff to take care of... I need to have some of my meds refilled, and call to schedule an appt for my Mom at one of her doctors, and take Bub's to the Vet in the next couple of days, he needs his rabies shot and his back toenails cut which I DREAD! Neither of my dogs liked their feet touched... and he actually "nipped" at the Vet's assistant last time I had him in, so that means I have to "muzzle" him and I hate that!!! Thus of course his nails are way too long and no matter how I try he will not let me cut them... I have tried every thing in my power to get him to let me cut his nails, but him and Tazzy hated their feet messed with... ONE THING I WILL do differently with a new pup.... CUT THEIR NAILS RIGHT OFF MYSELF... and avoid having to take them in, have to muzzle one, like Bub's, and it saves a great deal of time and heart ache for me, because I just hate having to put that thing on him....and I even tried at home at one time to muzzle him, but he is so strong with his front paws, that he can pull it off, if I don't have anyone to help hold his feet down while I do muzzle him... so to the Vet we go, and I know she will faint, because most women would envy how long my dogs nails got and get... it is just nuts... but since they are in the house, they don't wear them down like outside dogs do....

I've been in such a tangled mess with my life in the past several months... I feel as if I am NEVER "caught up" - I always feel like I am 5 steps behind what I need to be doing, I am so slow at everything... I even had my hair cut all off short, so I don't have to take time with it because I feel as if I can spend that time doing something else other than messing with my hair...but the sad thing is I bought color for it gosh, 3 or 4 weeks ago I guess, and I STILL HAVE NOT found the time to color it! Something else always seems to take priority or by the time I may find a moment to do it, I am too tired to fool with it, so here it sits on my desk, as a reminder of one of the MANY things that need to be done....

As I stopped a moment to make out a Birthday Card for My Granddaughter, Heather, who will be 18 on the 30th of this month, again memories flood my heart, she met me when she was only 2 years old, and "Nana Pam" now is what her and both of her brothers call me. I've been able to "watch" them grow up through here, Facebook, - my daughter has been so great about posting all of their vacations, school functions, prom, homecoming, football season, Heather being a cheerleader, in volleyball, their vacations, the boys and all of the excursions they go on with their Dad and their Mom, my daughter Amanda, and again, how time has flown by so quickly just makes me wonder how life can go by within the beat of a heart, within a breaths space.. it seems I just met her - a tiny little thing, and here she is all grown up about to be 18 and off to college! My how life can truly rush by... at times I am sad because I am far enough away that I have not been there physically to witness all of their triumphs, but as I said my daughter blesses me with so many photo's of all of their special times that I feel like a piece of me is always there - watching as they grow into young guys and soon Heather a young woman off to college to follow her own dreams.

I often "feel" for our kids now days. This world has truly changed so much, and in many ways, NOT GOOD! There is so much more rivalry, rather than chivalry out there now... where there used to be goodness and gratefulness, has been moved to being greedy and just down right hateful and mean.... people are "bitter" about so many things, and of course in some ways, they have the right to be bitter. When you stop a moment, and think of all the horror daily not just in other countries but right here on our own soil, in our schools, colleges, Malls, everywhere there are "people" there seems to be a "person" which is is difficult to call someone a "person" when they want to do harm to other innocent people... but it is all around us... NONE of us "immune" from that fact.

Yet, there are still "good people" those who are kind and generous. They do for others, and not because they have to, but because they "want to".... I have a dear friend who is really going through a very tough time .... she is fighting the big "C" word, after having it back a first time while we were basically still in High School - and then here it is 30 plus years later, and again she is battling it... trying to work, never has a bad thing to say about anyone else, an is always so very grateful for those around her that do all they can to help, out of the kindness of their hearts, not because they "have to", but because they "want to"....

And I partially because most of my family is gone, My Dad and all of his siblings, parents and so forth passed away, and even some of his cousins and so on also gone. I was basically an only child, and have a "half brother" but he was at least 15 years plus older than me, went into the Air Force and spent 20 years much of it overseas in England. He retired from the service years ago and then they settled in North Richland Hills in the Dallas area and he was working for one of the big helicopter flight simulator places I believe. So, my Mom's parents have both passed away, she has lost both siblings, an older brother and his wife, and lately her younger sister to cancer... so when it comes to "family" especially close family, I really only have Mom and my two kids and of course my daughter's family. Even at that they are hours and hours away, and my son, also at least an hour or so away, with a job of his own, and life to also deal with.

So, last week when it came time to try and "adopt" a pup I did not realize the entire realm of red tape involved. It has been years since the last time I actually adopted a cat or dog... my last two, Tazz was a Christmas present and we bought her in Seattle, and Bub's I also bought him when he was just a puppy.... so when I get this email wanted ALL of this stuff and THREE references - asking ALL about my home, yard, how I was with my past animals etc... I was like I don't have that many people that are here close enough to give me 3 of them... but Jim was gracious enough to fill one out and my Mom helped me out, and hopefully with those, and everything I've told them, along with Vet records from my current one, whom is just a sweetheart and I am so happy she is back in town also... we went to school together... and then my other Vet that took care of them for years before Venetia Shafer at BlueBonnet Vet Clinic came back... I am hoping that is enough .... I've been racking my brain to think of someone else... of course my daughter could help out or my son, but they are so busy, taking to time fill out a long form for them is difficult... with kids, jobs, home and so on, I can't believe they keep up with everything as it is....

I guess that is the one thing I hope "joining the Methodist Church" would help me with... now that it is just myself and Bub's... I have Mom, but really no one that is a "close friend"... and a couple of people "close to me" but not like we do things together etc... so I was hoping by getting involved back in Church, and hoping to find some other things to participate in, I would find some "friends"... and we all know with the autoimmune illnesses, the Lupus, RA and so forth... my life "daily schedule" varies from one moment to the next... depending on how I feel, or how Mom is doing...

I also realized that if it were not for my Mom, I have no one to "assist" me with anything, say this plumbing issue... or anything like that... I don't "know" enough people well enough in town, even though I have been here for all my life for the most part, I guess due to my "life when married" I kept myself more at home, almost locked away, busy with those things, I did not get out in the community to meet others... and here I am 55 years old... and unlike a couple of my friends, or like my neighbor, they have "friends" that are helping them building a two car HUGE GARAGE that is as big as my home! I "Lack" that type of support system... I am "new" to the church, been going now for about 3 months, but sick some of that time... I have not gotten out and about to meetings, or even to the Saturday Farmer's Market and so forth, so I must find the "funds" to pay for my plumber, or have work that is so in need on my home, or any and everything that comes up, there is not anyone I can have that could help out... and you know, that frightens me honestly... of course I have my Mom... and my daughter and son, but they are as I said hours away, and have their own jobs, lives, and so on... so I am upset with myself... that I have allowed myself to stay "almost too alone" to have any kind of support system... my neighbors have "helped" some, but I have been quite honestly upset with one in particular... he used to always be here asking if we needed anything... when Jim was here, he constantly was mowing the lawn, and I usually paid him, even when he said he did not want it... but I knew they needed the money at that time... and my other neighbors have a very ill Mom they take care of and another one is up in age, and she needs help herself... so it gets to this spot in life, that you begin to think, what would I do if I needed this, that or the other... I can guarantee my Social Security Check pays the bills barely, and that is all... in fact I am very upset with my car insurance, it seems every time they bill me, that bill is higher, even though my car is older... and now I must spend Lord knows how much time trying to find a "new" and hopefully better Medicare Advantage Plan... the one I chose for this year has sucked more than I can say, and they are someone I would NEVER ever recommend to anyone! I am extremely disappointed in AARP for even "sponsoring them" - they have done some really horrible things this year to their patients, and I am just mad as hell honestly, because now I must spend days trying to find another plan that will cover ALL of my doctors, my medications and that is a hard thing to do now days... our doctors are all shy of even Medicare and a supplement these days... they DO NOT get paid for months and sometimes a year or more, thus they are leery.... Well, I need to get busy on other stuff as you can see, but I wanted to take time to first tell those who do help THANK YOU! Whether a kind word, or support of my advocacy etc.... I appreciate all of you.... and to let you know there are many things right now in my own life that are frightening.... I am going through a great deal of emotional distress... and "losing" a relationship after 13 years and then losing Tazzy after 3 years, have really put me in a place of even more distress.... there are other things playing into this but, I shall stay quiet for now about those.... but to all, remember the great memories and hold them close... remember time is fleeting, and before you know it, you are in your mid 50's and wonder what the heck you really have done in this life.... and to hold on to whom and what is dear to you.... Rhia

Invisible Illnesses Week IS Here! Join Me!!! I havve posted this blog, put it up on Twitter, FB, and I also have a link to the #invisibleillnesses

http://invisibleillnessweek.com/

 You may also participate in several activities during that week! I know this is a very tough subject for so many of us.

I realize for myself, I find that I am always trying to "explain" why I do something a certain way, or why I can't do certain things. And I also realize unless someone is close to you, they just do not "get" what an Invisible Illness is, nor do they get hwy you have a "handicapped" parking sign" - or you do not go out as much, or many things in your home you must either live with, or try to find someone to help you with.... This is just a tiny small amount of what I've blogged and written about in my years and blogging and many more writing.... 

I shall much more to say on the subject over the next weeks coming up!


This kind of slipped up on me, and I was not aware it began so quickly - I have LOTS to say about "invisible Illnesses, and just how much they effect SO MANY lives in so MANY ways!!!! I will try to put some thoughts together by tomorrow and post more......


When you have a person look "down" at you for parking with a "handicapped sign" or they are staring for any other reasons, usually several that is just ONE aspect of how chronic and invisible illnesses can "haunt" your daily life,


I have people in disbelief that I have had so many surgeries, or that I have Lupus, Sjogren's, and RA.... well NO I do not look SICK all the time, but they also do not see those days and times I am unable to get out of my home, or even do much of anything i my home, but sit on the sofa and watch movies with my pup.

I, in fact lost my Pug, this past week Tazz. It was extremely sudden an unexpected, and she did not even appear to be sick, until it was too late to truly even find out what caused her to be ill. We assume, it was her heart, and it gave out on her, after 13 years of being my precious "baby girl", my friend, my companion, my all, my everything, and giving me an unconditional love that no one else can really give. Thank goodness I have her "brother" who is about 7 years old, Bubba, I call him Bub's, who also misses her and I know he is confused as to why "sissy" is not here. But, we have one another to lean on and that right now is my saving grace. As I hope tomorrow will END a very long drawn out situation that has created chaos and havoc in my life since March 2014, then I pray that something that appears to be half way "normal" shall come to light.

I hope to be able to get back to blogging more, my advocacy and activism, & helping others fnd their way through the often rocky climb and confusion of "invisible illnesses" .... They cloud our minds, our hearts, our souls and our lives... and I hope I can help others to find their way out of that cloudy, insanity of being chronically ill, and often many not understanding it all....

#RA Blog Week WEGO Day 4 - 5 things I have learned About Myself since Diagnosed with RA

Another great subject to ponder! What 5 things I have learned having Rheumatoid Arthritis?


I am sure MANY and/OR ALL of us, could state many, many more than 5 things we have learned over the course of days after you are diagnosed with RA.

I've learned that even through all of the fatigue, all of the complications, medications, turmoil, the "loss" of what a normal life had been before RA was for me, that I am MUCH STRONGER, and I can DEAL mentally and emotionally with ALL things than I used to think I could.

I can "handle" helping my Mom, running errands at times, shopping, and all of the usual things we all need or must do in a day, week, month or as the years go by.

I also have had to "deal" with a new normal. I've not been sure if I could truly deal with all that having any chronic illness and/or chronic pain when I was diagnosed. I cannot DO all as I used to be able to. I've had to give up many things I loved so much. Going on an all day shopping spree, and maybe just window shopping, but I was able to go, and then come home to get ready and go dancing, or out to eat with friends.

I no longer CAN do those things, but I have found out that I can live with NOT doing some things, yet I've learned new things that now can occupy me, like advocacy, activism, and being an Ambassador. I learned how good I am at being in the realms of helping others go through what I may have or are going through too.

I've learned that there are BILLIONS of places online to get information, do research, and find out any and everything you want to learn about your health issues. But, I have learned to "watch" carefully some of what I see. NOT ALL of the information out there in Cyber Space is true.

I have to learn how to give myself injections. I also have had to learn "where" and "where not" the lab people can "stick" me to draw blood. My veins are tiny, and have lots of "valves" in them (something else I learned) thus I have about 3 places that they need to use (if they will listen) or I have to be stuck several times before they can "hit" the spot.

I've learned how to improvise, and find different ways to open a jar lid, or a can. I've had to make sure I take enough reusable bags into the market, so they are not too heavy for me to carry. I've learned to "ask" for help, which is so difficult for me to do. I just dislike having to ask anyone to "help" me, yet I have learned at times someone else has to do it, because for one reason or the other I can't.

I could go on and on about what I have learned, think about, and also cherishing each and every moment of those that I love and hold dearly. Time is truly precious. This week for me has proved that 50 times over for sure.

http://www.radiabetes.com/leading-prompts-for-rablog-week-as-of-august-18-2015/

Does "RA" along with other "Chronic Illnesses" Harm Relationships?

I could go on and on about this ONE subject. The article itself touched on many aspects. But, the one thing it did not hone in on is all too often WITH RA, comes "other illnesses"... Lupus, Sjogren's, etc... and then it can effect your other bodies parts, your heart, your lungs, your brain... plus as he said it is like the "3rd" wheel of a relationship... then throw in that the OTHER PARTY, the one that was "well" suddenly is totally thrown for a loop physically. The person that "helped" through the flares, surgeries and so on, suddenly is NOT even able to care for themselves in so many ways. Then what? How can "any" person, much less a relationship withstand that kind of stress? I do realize there are many that do... and they get through it, and they are closer, than ever. I always thought that would be "my life".... way before RA, and illness... yet LIFE can turn on you within a breath's space... every plan, every dream, every idea, all of the things you have planned to do as you "grow old" together. are thrown out... NOT just the "bathwater"... but the tub, & yes I guess you could say the "baby"... but I use that at the moment for a lack of a better way to put it.... these illnesses "eat you alive".,. they do break up families, they do cause divorces and separations, they do cause harm to friendships, and they effect each and every aspect of life... they do make you angry, mad, pissed, upset, feel guilty... and feel more guilty and even MORE GUILTY!!!! Much of what will be my in 3rd book, if I ever get finished will probably be on this subject. Lord knows, I have no answers... I only have "the fires" of what life is bestowed upon me to walk through and some of them have freaking "burned" me in a 3rd degree type of way, leaving their scars for sure. I am going to post this on my blog, as well as go into more detail later in the day today or over the weekend. Plus I also have several other things I want to put on my blog that have happened... 


http://www.thebimblers.com/has-rheumatoid-arthritis-ruined-your-relationship/

Incredible and AWESOME News for Patients with Lupus, RA, FM,Sjogren's, Heart disease, Cancer & so much more...

21st Century Cures, has stepped out to amaze and delight so many health activists, advocates and truly help to get our Federal Legislature involved in getting ALL of the research we need in order for so many of us to become "healthier" and hopefully gain some quality of life back.

Here is some information from the Arthritis Foundation about 21st Century Cures...

EnergyCommerceCures ‏@ECcures Jul 10

BREAKING: The House has approved the 21st Century Cures Act by a vote of 344-77 #Cures2015

Chronically ill, chronic pain, and how LIFE can just be absolutely almost unbearable when you feel too bad to deal with it!

I don't care what anyone says, EVERYONE has those moments, days, weeks, and so forth... that things just DO NOT go RIGHT! Yet, when you are dealing with all too often Chronic Illness and Chronic Pain, some of life's bull, can be totally the reason some people just totally "lose it".... I know we wonder when someone "hurt's themselves", or they may just "go off the deep end" and rant and rave about something, or they "take off" for the day, or for a couple of days... or any number of things that we do to try and keep from going completely BONKERS, in life, in illness, and in pain... then add in the STRESS that complicates everything it seems, and it is a wonder that ALL of us are not in the "nut house"... thus this is one reason that I "rant and rave" in my blog and in my writing... some days you just have to PURGE all of that "ugly mess" out of your mind and heart. Everyone has their own ways... mine is to "write it" "say it" and then I am "free" what those "ties" of stress that bind...


AM SO BURNING MAD I could just about SCREAM to the MOON and Back!!! After THREE times of trying to get order for blood work over to my PCP from my Rheumatologist, I go this morning to have other blood work done for my PCP, and they tell me "they do not have the Rheumatologist's orders for the blood work!!!" SO, I go outside, call their office and gave the the fax number. They were going to fax it right then. I go in and for the 1st time he gets my blood the FIRST stick!!! BUT, they claim they still don't have the Rheumatologist orders. So, we get my Mom's done, and get my other finished and still they continue to tell me they didn't get it. So. NOW I've had to email my Rheumatologist again, and I KNOW they faxed that paperwork. My PCP and those girls in the office are idiots. It's probably been laying on someone's desk there now for a week!!!! So, NOW I have to make another trip, and no telling how my veins will act. One time they do great, the next they suck. I am supposed to go have the discography done Friday! So, I don't want all of my veins bruised too badly, then they have hell starting an IV!!! So, right now I am ready to blow more than one gasket. Then EARLY this morning, I get an email from "a person" that made me so mad I called them even though it was 2 HOURS earlier than me... so about 5 AM "they" get my call. After chewing "them" out via email, I was so HURT and felt so damned betrayed, after putting my heart, mind, body and soul, in a relationship for 13 years, and I GET BLAMED for it not "working"... I CAN'T fathom how someone who freaking did things that HURT ME, can so easily FORGET, ALL THEY DID OVER THE DAMNED YEARS... but I am THE ONE TO BLAME... OMG, I am so tired of being walked on and wiped on like a damned doormat... LIFE is NOT easy! PEOPLE disagree... that is PART OF A RELATIONSHIP... NOTHING goes COMPLETELY SMOOTHLY... not when illness, accidents, family... everything can't be PERFECT, but apparently, someone thinks YOU NEVER ARGUE, YOU NEVER HURT someone's feelings, that it is some FAIRY TALE!!! Lord why the hell I ever even tried I don't know... you would THINK I SHOULD HAVE LEARNED MY LESSON!!! But, I WILL NOT BE USED FOR A damned door mat anymore.


and continued....

PLUS I completely changed my entire bedroom around yesterday. I am "parying for it today" though... my lower back and hips are on fire they hurt so badly... then the blood work was "fasting", so Mom and I both went... so I had not eaten or had anything but water since last night... and then Mom has such a terrible hip problem, I finally got her to buy a cane today. She can't put any weight on that hip. I am calling my Orthopedic Surgeon who did my shoulder and neck and getting her an appointment. There is NOT ONE Ortho doctor in our town or any closer that takes our insurance anymore... so she has to go to Dallas anyway, she might as well see the best.... I fear if an injection does not work, she maybe facing hip surgery.... we may both be down with surgery by the same doctor ... if things don't get better... So, she wanted to go to Wally World and I took her. I needed some really very heavy plastic... I am trying to get the place fixed where my dogs are paper trained. My house is not as level anymore, it always moves around, that is TX soil for you. This house was built in 1950 and it STILL SETTLES, depending on the weather, and time of year. One day you can't open a door, the next it won't stay closed... it sucks... so I took her out there, and I knew her hip is bad by the way she was walking, and when she said she would buy a cane, I really knew it was bad.... so I am home, had to take my meds, give the dogs their meds, I still have not eaten, and am trying to get my "orders" for that damned blood work to me, so I can get them done. They won't pay for the Xeljanz (insurance) until I have the blood work done.. so between crappy weather, and a crappy life mess at the moment, and now hurting like hell, I am ready to just throw in the towel, wash cloth, kitchen sink, and the baby's bathtub with the water.... out the danged front door and say to hell with it all! LIFE SUCKS and PAIN SUCKS WORSE!!!!

"Cake" The Movie - A "must see" for all of us who suffer through at times "intractable pain" & just how it truly effects every part of our lives

I haven't finished watching the movie "Cake" with Jennifer Aniston in it. I started it earlier in the afternoon, because I've been waiting for it to come out. After seeing the information on it, on the Arthritis Foundation Website, and then watching a preview of it, I knew as soon as I could find it, I would watch it. I knew it would not be "funny"... and I knew it would probably be a very difficult and sometimes even emotionally painful one to watch. So far, Jennifer should get an Emmy, Golden Globe and whatever else they give out for "best performing" artist. She is totally amazing in this film, and she truly gives "heart" into just how horrid life can turn on a dime. As I took a break for a moment, and walked outside looking at the deep dark clouds around, I realized how within a "breaths space" as my saying goes, that life can go from "good, you are working, in a good relationship, have a home, family and all seems to be going well, and before you can turn around ALL of that and more become like someone put your entire life into a blender, blended it well, and poured it all over the floor... and like an extremely difficult jigsaw puzzle, you don't even know "which piece" to pick up, and how to begin "trying to glue" your soul, your heart, body, mind, spirit, everything back together... to even somewhat "resemble" how it used to be... pain, whether physical, mental, emotional... whether from accident, illness, or whatever may bring it on... can sometimes for some be much too hard to bear... we ALL step into the "space between"... dark and light... trying to decide whether we need a "flashlight" or a pair of sunglasses... and everywhere you turn... it seems to be the wrong direction... I have NO answers... but I STILL have the "want to"... to continue to put one foot in front of the other, to climb one inch up the mountain, and when I begin to fall, dig my heels in and sometimes they may bleed, along with the fingers that the rocks have dug into also... but determination, will, longing for the better, and knowing for SOME REASON I am HERE!!!! ... I continue to be "here".... I may never fully understand the "why's"... and honestly right now... if I try to even begin to figure it out, I just get more confused... so I just "am"... and I will listen to my heart, and my head... and I know those will point me in the direction I need to go.... I say this because I truly KNOW there are MANY just like myself... and YOU also, may not know the "answers"... but you can certainly take those "baby steps" to a better reasoning someday... as to the full truth.... Each of you that continue to ask about me, pray for me, be concerned about me... and love me... without condition, just as I am... Thank you... and if you feel you are "strong enough" emotionally, I ask you to watch, the movie, "Cake".... 

 

After I finished it, I was a bit "bewildered" by the ending. I know as she "Jennifer" did what she did at the very end, it was a signal, that from there she would begin to "heal". I guess I expected an ending possibly of a bit more of how she began to put things into perspective. But, then as I thought about it throughout the rest of the evening and this morning, that it was left up to us, the audience, and possibly those of us suffering from such a tremendous, almost unbearable heart break, that we vary, all of us, how we "move past" loss, whether of someone we love, loss of our "normality" of life".


I am glad I felt "strong enough" to watch this. In so many ways, it "fit" just what I am going through at this time in my life.... my own illness, pain, and all that goes with it (them), a "loss" of who I am, who I used to be, and still wished I was in some ways, a loss in a relationship, actually do to an accident, not the loss of a child, which I just cannot begin to fathom just how painful and horrible that has to be... but a loss in a relationship I've had for 13 years... basically due to a few moments, and within those moments everything in two lives changed forever....

I saw pieces of my own anger, frustration, wanting one moment to be alone, and the next wishing someone would just hold me... and tell me things will get better... and in the next breath the anxiety of how I will accomplish all that needs to be done, and then the realization, as ill as I am, I HAVE BEEN doing EVERYTHING anyway... so why is "now" any different than a few weeks ago? 

The pushing away people so they don't see the fear, the anguish, the heartache, or the pain, physical, mental and emotional... days like today, that I would just as soon sit on my sofa, with my two pups beside me, and do nothing but watch movies all day long. Which in reality, I could. But, that would not do anything but put me further behind in things that I either need to do or things that I want to have done, most of which I have to do myself.


So, chronic illnesses, chronic pain... all of them... whether autoimmune, that effects every aspect of your entity... your body, sometimes in so many different ways and in different parts of your body... emotionally having something chronically with you, illnesses and/or pain, tears you mentally to pieces... it just does and anyone that would say it does not, has not came to the "reality" that they are truly ill. 

The brain fog, the slowness of thoughts, forgetting things, having notes to keep up with notes, calendars, and still forgetting appointments, birthdays.. and even if you do remember more often than not, you just don't have the strength, or stamina to go to an event... even going to the doctors office or going for a test of some kind is just such a major ordeal, that I just find myself postponing a test, because I just cannot stand the idea of having to be put through it.

Besides I already at times know the results, and the test honestly is just to "cover" the doctors butt, and to shut the insurance companies up... they waste so much money and time... when you could have had whatever "fixed" and be healing rather than going through some expensive scan, test, etc... that still does not give them the things they need to know. I have more than once some to figure out, why it is to the point of so many tests, scans etc.... each and every time I had a "joint surgery"... when they actually can "see inside" the joint in the surgery, they find it was much worse than any CT, MRI or X-ray was showing... so to me, once again so many hundreds of thousands of dollars just wasted, along with a patients time... when surgery is the only answer to truly KNOW AND SEE what is exactly wrong.


I hope you do watch this movie, you get some things out of it, that shall help you find your way through it, and take something from it to help you, and your own chronic illness and pain...

Paul Gileno speaks out for ALL of us with Disabilities!!!! Now it is OUR Turn to tell Rand Paul how we feel about his comments!

 

 

U.S. Pain Foundation President Speaks Out Against Senator Rand Paul's Disability Comments

 

http://myemail.constantcontact.com/Founder---President-Paul-Gileno-Defends-those-with-Disabilities.html?soid=1103157487426&aid=A6wnyF06XsU

Now it is OUR Turn! Open Your mind and mouth, and/or email hands and type how you feel about these remarks. 



We must stand up not just for ourselves but ALL that suffer disabilities.

#USPain

www.Facebook.com/RandPaul

When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...

Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....


When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....

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!

#HAWMC WEGO Health Writer's Challenge April 16th 2015 - "Life Goal" - Can you Achieve it ot possibly more than one -

The one goal that I've been working on now since I was about 15 years old, is to be an "author and writer" and have my books published.

That had been a goal that I had committed myself to, back then even as a teenager. I guess I really never gave myself a "time frame", but of course it is something that I want to do, and be able to see if what I write helps to make a difference in someones life.

Of course a "portion" of that goal I have already achieved. I had the honor to have not just one, but two of my books published in 2013. They came out about months from one another. Those were poetry and prose. And each time I hold one in my hand, I am so thrilled at the accomplishment I achieved.

Yet, the #1 goal even in the author and writers achievements, is to finally put all of my "life's journey" through the many things I have done, endured, and certainly will have a up close and personal look into my chronic illnesses and pain. I am working on that book, already have "named" it and got a "cover" for it done. I've gotten many of the chapters already completed, so I am on my way to hopefully completing this goal at the end of 2015 or early 2016. I just feel between my blogging, my activist, and advocacy role, and being an Ambassador, I am "giving of myself" exactly what I am supposed to be accomplishing. But, this book is what I hope to truly make others know for sure, they are not alone, they are not crazy, and all they experience it truly not "acceptable" as far as health goes, and we must try to move forward, to achieve victory over Chronic illnesses, such as "autoimmune diseases and others" and chronic pain.

I never fulfilled my greatest "desire" or goal that I had thought might happen very early in my life. That was to be a nurse. I also dreamed of being able to write my own songs, the lyrics, music, and sing them too. I knew a long time ago, I would never be the next "bright and shining" star of the music world, but I can dream about it.

Of course, I've had to "redo" my "course" several times when it comes to completing this 3rd book. I find myself taking on way too many other things that to me are very important. When I allow that to happen, then I have change my course, and get back on track of what I truly feel is the most important, which of course is this 3rd book. I have already decided there maybe yet another to follow it, and give more insight to things I dealt with in life.

        

#HAWMC

WEGO Health Activist Writers Challenge!

 

Dealing with Chronic Diseases and Chronic Pain that seems to steal your entire life...

Sometimes I feel as if I write the same old song and dance, over and over again. Yet, as I was glancing as some email newsletters I get, once again for the Thousandth time, there it is in my face, talking about not being able to travel "too far away from home", or how these illnesses take you so far down in fatigue that the simplest things you used to be able to do, now are like monumental achievements.

I always try and bring myself back to "Okay, it could be worse"?! Well, what does that mean for any given person... worse as far as I am not in the bed 24/7/365? Worse that right now I am "well enough" to not be on the sofa for many hours of the day? Worse as in, I can still walk without a cane or a walker, I still have my eyesight, I still can talk, and okay all of that "same old stuff". Worse as in, gosh there are so many others out there that have it "worse"? That is dependent on who is viewing it, at any given time. For one person that might mean a "bad" day or two.
For others it may mean they had to cut a vacation down and come home a day early, or cancel dinner plans for an evening, or decide to order take out because they were too fatigued to cook. I've "entered" a couple of different items for this month. One is sponsored by the Sjogren's Foundation, due to April being Sjogren's Awareness Month. Each day we must think of "ONE" word to describe "Sjogren's". The other sponsored by WEGO Health, is April is "Writer's Challenge Month". Each day they give us a "prompt" and we are to write about how that particular thing effects us. Some medical and some just life as it is stuff.

Over the past 8 or so years, once all of the autoimmune issues came to light, I had high hopes that with a more "specific" diagnosis (or more than one) between the doctors, myself, medications, and taking care of "me" would mean finding a much better quality of life in my future. Now, each day, I come to terms with the pure and simple truth. Unless something miraculous happens in the thorns and arrows slung at all of us with these hideous illnesses, I nor anyone will ever find they have a "better quality of life." I think we "fool" ourselves into thinking, "we must remain focused on the good, on the "half full" rather than half empty glass. We must think that against all odds, look how many others have out smarted all types of "basically deadly" diseases, and are here to witness to us that it can and does happen.

Yet, me putting on that happy face, yet inside deep inside both hips it is like a ball of fire inside, churning, aching, burning, and how do I "ignore" that kind of pain? Then I find out last night, and I mean very late evening, that after waiting 2 weeks to see my orthopedic doctor who has done both knee replacements, and much more now does NOT take my insurance? And the woman on the phone was an absolute witch. When I began to ask about me paying for the visit, she snapped back at me, an office visit is "$175.00"! Well, in the first place they should have KNOWN right away, and in fact when I called and made the appointment, she even looked at my file and saw that I had the insurance and never uttered a word that he was no longer taking it! Well, that leaves me in a world of hurt, now over 2 weeks. If they had told me that in the very beginning, I could have either tried to find another orthopedic doctor, OR just paid cash for the visit and the injections.

I was still so totally upset by the entire ordeal, that I called his office again this morning and spoke with HIS nurse/office manager. She told me the "visit" for me since I am an established patient is $75.00, then the injections are $100.00 each. So, the lady from the entire doctors building didn't know the circumstances, and didn't realize I had been seeing him for many years. I can also say that if I had been able to get hold of him, he would have charged me less, and did the injections. Him and I have been through several situations involving my own self, and then a surgery he did on my Mom, so he is well aware that when I ask something or say something, then it is something I am extremely concerned about.

Then you take this new stupid insurance, which means if I see another specialist that I've not seen in a long while, then we have to go back to square 1 and get a "referral" done to satisfy the insurance company. Fortunately my neck and shoulder orthopedic surgeon IS taking the insurance!!! So, even though I have to wait another week, which sucks because today is more than pain, hurt, despair... almost intractable pain in my very lower back and especially my hips, that even higher on my waistline hurts, at least I can see someone I know and trust. He has a "jackass" bedside manner. But, if you overlook that, he is EXCELLENT or more than that, THE VERY, VERY BEST Orthopedic Surgeon in the US, as far as I am concerned.

When I was first sent to him due to needing a complete reverse shoulder replacement, of which not many specialists do them, we kind of got off on the wrong foot. He is one that prefers an "less educated" person, as far as their medical situation. He is not thrilled over someone like myself, that comes in, with all of my own home work done, and knowing just about what the issue is with me, then telling him. He is not very happy about a "patient" that he feels thinks "they know" more than he does. Of course I don't BUT, when it comes to myself, my own surgeries, illnesses, and all I've been through in many ways, I am almost an "expert" in some things with my own stuff.  Well, when I went in and seen him for the shoulder, gave him the "low down" on the entire mess I had been through, where the pain way, how many other "scoped" surgeries I had, and in the last my other orthopedic surgeon told me that there was "nothing else" their to repair. The next step HAD to be a "reverse shoulder replacement". And it took weeks and weeks to find one. Then same with my neck. Right after the shoulder surgery, within 3 months I began to have once again a "similar" issues with my shoulder blade. As I again had done, researched it all, and the pain "seemed" to be coming from my cervical spine. Well, he did a special CT on it, since I can't have MRI's, and that CT was terrible. The tech that did it, was not in the right place to do business, and he really was NOT elated at all. He "went off " on me, stating just because I do research online, does not make me an expert, and he really got pissed about my "input". So, I am not sure what happened, but within a week or so, he decided my "theory" maybe right. Since my other orthopedic problems never do "show" on CT's, MRI's... whatever kind of "scan" they do, it is always MUCH WORSE in that joint, than what it showed. So, that was my continued premise. He decided that I could be right, thus he set up to have me on the operating table, and do a 4 level disectomy, and also fusion to at least two of them.

Well, as sure as I am writing this, for the most part, what I had "said" and drawn in my own conclusions, were almost to the "letter" when he opened up the neck and began to see the issues. That is why I say, he is an excellent physician, one of the very best in orthopedics, yet his bedside manner sucks... and once I could look past that, and HE could ACCEPT that in some ways I COULD BE correct, it worked out fine.

Thus, having to wait yet another over a week to get some relief sucks.On top of everything else, I am not so sure about this "forminal" lumbar injection that is supposed to be done Thursday. Now I found out, it is not the "anesthesia that they concern themselves with, as far as the patient driving home. It is the epidural injections in themselves. In that part of the spine, it may make my legs feel a bit "heavy" or numb a bit after its done. Not everyone has that, but some do. Thus the reason not to go alone. But, when you have no one else to drive you, what the hell do you do? Forget it? I mean Mom and Jim both can go, but when it comes to driving, that will be me. Neither of them cam drive to Dallas and back.

So, now I also know this orthopedic doctor could also do those injections too. So, do I hold off, and then have then done later by him...


These are the very examples of why life deems itself much, much more frustrating and difficult when you are suffering from chronic illnesses and/or pain... ALL of it is a "PAIN" in one way or the other....