Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts

Tuesday, March 22, 2016

DOES IT EVER END????

Now as if things are not screwed up enough!!!! MOM TOOK ALL HE MEDICATION MORNING MEDICATIONS THAT WERE SUPPOSED TO BE THROUGH FRIDAY! all of them already! THEN ONLY TOOK "PARTS" OF THE BEDTIME MEDS... WHEN I asked her why she just looked at me and said well it is so simple I really do not know why I can't "get it"????? Then she DID NOT TELL ME that her legs and ankles were VERY SWOLLEN... now this is since Sunday - well she did NOT take her LASIX all week last week, because she did not take ANY meds last week... and SHE said Well they were "worse" they are better now... BULL, SHE is playing with "fire"... the entire reason for being SO CAREFUL about swelling is TOO much FLUID can cause that "heart valve" to act up and then she is facing open HEART SURGERY!!! So, I MADE HER TAKE ANOTHER LASIX and watched her and then increased it over the next 5 days to 2 every other day, which is what her heart doctor wanted her to do in the 1st place!!!!! 

Then "THEY ARE BACK!!!!!!!!!!!" I was in the back yard a few days ago, and in the back forty lot over some of the "weeds" I saw lots of what I thought were those damned "May Flies" which I hate swarming... BUT NO, THANK goodness I went back today and looked, because earlier I was out there with the weed eater trying to knock down some of the tall weeks before the city freaks and wants me to pay to have someone come and mow it with a tractor... 

BUT I stopped and decided I had enough room to spray weed killer as usual and should knock it down enough, it is all weeds and no grass... BUT, I LOOKED BACK AT THAT OLD BUS again a bit later AND IT'S THOSE DAMNED HONEY BEES!!!! WE "RAN" THEM OFF WE THOUGHT' They built in the neighbors walls... and he almost never got rid of them and NOW THEY BUILT OR ARE BUILDING BACK IN THE DAMNED OLD PIECE OF BUS ON MY BACK FORTY!!! I have been wanting to get someone to haul it and a bunch of old dead trees and tree limbs out, but finding the money is not easy... SO CRAP I have to do something... I just hope I can find someone who will come and "move that damned hive".... what a mess... 

Bub's is better, and I still never "found" what bit or stung him, and he is still not all the way over it, but all of it is looking much better, and I can tell he feels much better... what a damned nightmare... I do not honestly know what to do about Mom... and then I find out something about my car lease that I am really pissed about, but I will "save" that story until I do some research..... anyway, things suck even worse, and I am worn out.... and sick and tired of it all..... does it ever end!!!????

Saturday, March 19, 2016

National Pain Report Offers New News - an Online Support Group

I have been following many of their articles over about the past 9 months and LIKE many of the articles, and things they share about pain, chronic pain, and all of the causes of severe never ending pain...

Since I am a pain patient, and also know what it is like to even not have a "great doctor" who listens and helps, and family that seem to not understand, the loss of relationships, friendships and the loneliness that all too often comes with these "silent and often invisible" illnesses...

So, I share with you they are opening up their own Online Support Group!


http://nationalpainreport.com/online-support-group-for-chronic-pain-launched-8829695.html


Friday, December 4, 2015

Busy Time and Trying to Keep my Head on Straight, Keep the Brain Fog from setting in, getting closer to the pain pump reclacement surgery, the horrid, almost Unbearable Pain with my RA/Lupus, Holidays a NEW Fur-baby! and so much more....

New Direction for my Next Book below...

I have LOTS of things that are on a "deadline" in the next couple of days, but I wanted to share that a very dear long-time friend of mine and I were talking earlier this week, and we were talking about our lives, the younger years, and so forth. As I began to kind of "catch her up" on some things I really have never spoke about much, as far as how my "home life" was, I have an extremely controlling Dad, and I love him, and always will, and miss him even after 10 years since he passed away... but in many ways he, "stifled" me from "being ALL I wanted to BE"... his age, the times he was brought up in, his "views" on women, as far as college, careers... and as we talked, my friend said something that
inspired me about my 3rd book! 

I do NEED to tell my "story" about my life, even during my much younger years... especially as a teenager, and how much I was "kept" from doing all the things that the other kids in High School were doing.... he was more than overprotective"... and in many ways, it truly has "molded" my adult life at times... and it is a integral part of my life, and all that I've endured.... even the abuse later from an Ex-Husband (not my present one, Jim has never hurt me as far as abuse), but my daughters Father... anyway... all of that and more is a story that I should tell... for I am sure many others have dealt with the same things, yet they may not speak of it either... so I do have a NEW DIRECTION, AND A NEW VOICE, whispering me to make some additions, and/or changes where my 3rd book shall go... I think it will be something that many will want to read... Thank YOU, and you know who you are... I am so grateful that you have became once again a very dear friend.... whom I trust, and I admire...



The New Addition to our family - "my new fur-baby" Dennis!

 

 

Wanted to share a few pics of the new “fur-kid” addition Dennis, and Bub’s! I got Dennis yesterday evening, and brought him home for a “weekend trial”… but it appears they are already best friends… that is the most I’ve seen Bub’s play in a very long time! I think “if Mommy” me, can keep up with the both of them, I have my “Christmas puppy”….


Latest Addition of My Newspaper "All Things Autoimmune" - great article from pain, Lupus, and so much more!

https://paper.li/ravishingrhia/1438808814#!headlines 


 


 A latest Pic of Rhia!!!!



Much other things going on... but I must run out for a bit... PLEASE keep an eye out thought... I have an EXTREMELY important post for everyone that I will put up later today or tomorrow!

 

Monday, October 19, 2015

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

Friday, July 31, 2015

How to React to an "invisible bacteria" invading your body, when Autoimmune Diseases are involved & how do you know when you are "well"?

Good question! For myself, YES, it is!  Whether it is a "missing" bone out of my spine, that was found after 55 years of life, or an unusual "lump" on the top of my let thigh, my entire "medical" life always evolves around being unusual, unique, complicated, complex, and some doctors almost "fear" having to treat me at times.

We all in the world now share an added sense of "something is worse now" than 20 years ago. Bacteria now that invades our bodies have mutated and changed so much, many of the well known medications to treat these bacterial infections no longer are able to do so. I found that over the years our bodies do have an extremely interesting way they fight certain things... like this lump on the top of my left thing. IT is my own immune system although compromised, that began getting that infection "rounded up" an circled to push it into this lump, in order to try and stop it from spreading more. So even with a body and immune system that tends to not work properly at times, I still have enough of my immunity, that the body tries its best to fend off the bacteria, thus the "lump" under my skin is cellulitis. But, unless you know about it, or it breaks to the outer skin, it can go possibly not noticed. Of course when the lump came up and began to grow so quickly I knew there was something very wrong.

things with myself and my Mom are just insane. Between my own needing for back surgery, and now to find out my Mom, who we thought has a hip problem, find out it is also her lumbar spine and arthritis. So, between running to doctors, to therapy, for tests, some local and some in Dallas, and then me to come down with the cellulitis, plus I have not even gotten the chest X-ray so I can go on Xeljanz. My "TB" blood test came back "inconclusive" but they feel it is because it did not get tested quickly enough, thus that happens. But, until I have the X-ray, my insurance will not approve the medication.

Of course the sweltering temperatures are not helping... we are under a heat warning for at least the next 5 days and more... looking at temps above 105 plus the heat indeces bringing it up to 110 and above at times...

Things are just a mess right now and I am about ready to throw in the towel, throw my hands up, and then hide under the bed for the next month or so... Gosh knows when it rains it pours... and my doctors all agree, I am a "complex and complicated" patient... YA THINK???

I apologize for not posting more here, but due to my health issues and then all of Mom's things, I have really not been able to sit here for very long to post... I decided I did need to come in and post a few things and share why I have been "lax" in my postings lately....

Here are a few links also I want to share with you...

http://blog.arthritis.org/stories-of-yes/miss-teen-minnesota-juvenile-arthritis/

http://www.lupusresearchinstitute.org/lupus-facts/fight-lupus/lupus-and-your-skin


http://www.lupus.org/general-news/entry/statement-on-the-results-of-epratuzumab-study-for-the-treatment-of-lupus


http://blog.arthritis.org/living-with-arthritis/omega-3-fatty-acids-arthritis/?utm_source=facebook

By the way, talking about "Fish oil" and such especially for your pets, dogs in particular, I had a friend tell me about her dog, who was very, very old and had severe issues with joints. She had put her on "Canna - Pet" which is "industrial hemp powder".... I tried it for Tazz a couple of months... and it just helped her immensely. I was so surprised and thrilled. BUT I was NOT thrilled with the PRICE! The stuff is like $30.00 for a month's supply. In fact, it would be 60.00 a month if you gave them 2 a day... anyway, I did my own research on this "hemp powder" and began to find that there are many "humans" that use it for all types of problems. Especially joint pain, and inflammation... even allergies and so forth. So, I looked on Amazon and found a bottle of "100% hemp powder".... and this has NO THC or whatever the initials are for what is in cannabis that humans use to smoke... it contains none of that... so there is no "high" anyone would get, and it would never show up in the bloodstream or urine. So, I ordered a fairly large canister full at about $10.00. Well, the price right there was much better, but I was not sure how well it would work... It works just as well if not better than those capsules, costs a heck of a lot less, and both dogs even like the taste of it. I can take a treat, or a piece of fresh fruit etc... and roll it in the powder and they just love the flavor. So, I've been giving it to them every morning, and then I put a bit on their food.... I can see both of them up playing, and doing things that before they just almost could not do, especially Tazzy.... I wanted to share this with all of you, and also the fish oil they love too. I feared they might eat their food, but they eat better with the fish oil on it.... LOL!!!! Anyway, a bit of information for some of you..


http://www.medpagetoday.com/Rheumatology/Lupus/52814


Lots of great news above... from information about Fish oil and its benefits, to a new Lupus medication on the horizon, Miss Teen who has made her dreams come true in spite of fighting Juvenile Arthritis, and more... I think you will like reading these...

http://www.ucb.com/presscenter/News/article/UCB-announces-Phase-3-clinical-trial-program-for-epratuzumab-in-Systemic-Lupus-Erythematosus-did-not-meet-primary-endpoint-nbsp

Wednesday, June 24, 2015

PAIN! Pain and More Pain - My Hips, my lower back - I am trying to do everything I can myself at my house but these hips are just bad!!!!

RA? Lupus? Spondylitis? (ankylosing spondylitis) HLA-B27 "genetic marker",  Sjogren's? and everything else to go along with them!!!!


WELL IF MY HIPS AND LOWER BACK WERE NOT BAD ENOUGH, I spent my "EARLY" MORNING (ABOUT 7AM) this morning, having to "weed eat" some of my front lawn. It has gotten so tall, I was in fear to even walk though it... I feared with all this rain, snakes, and I hate those things... so, since for some reason all of a sudden, the guy next door, (that ALWAYS) helped to mow the yard, has not even looked at me, much less spoken, or even mentioned my yard. My back is as bad, but my lawn mower is also broken (the pull rope is broke) and I did find the manual a moment ago, so I may get that fixed. BUT, honestly I am NOT supposed to be "weed eating" or mowing especially... not after all of my surgeries etc... and my back and hips are to where I can't sleep at night, they hurt so badly, My Mom and I went to have blood work done yesterday, and it had to be "fasting" so we went early, and then the other labs that my Rheumy wants done BEFORE I can even think about trying the Zeljanx, was supposed to be done there, they had faxed over the orders over a week ago, and I get in, and guess what NO ORDERS,.. so I got on my phone, called and the woman said she would pull it and fax it immediately. Well, Mom and I both already had the other labs finished and "still no orders"...

SO NOW I will have to go back. I even had the Rheumy office call me yesterday evening and said they had faxed it THREE times... well that is just about how my PCP is... they put things on a "desk" and then it does not get into my chart, and now I have to go all over again, and I am a very difficult stick.. so he got a vein 1st try yesterday.. it would have been the perfect time to get all of the blood for ALL of the labs!!! BUT no orders... so I know I am having that discography done Friday early morning. It is about an hour away, with traffic of course up all the way in almost North Dallas at Medical City Hospital. So, that means my son has to meet me very early, and we will take my Mom's car. His truck is so far off the ground, I have heck getting in it after having anything done like this. So, we have to meet in time at my Mom's to get to Dallas and to Medical City by 7AM Friday Morning... LONG DAY for both of us... because he lives up close to Dallas and has to drive down here, get me then drive me up there... I could go myself, but they will I think put me under "twilight" at least for this procedure, so I won't be able to drive myself home.... I didn't even get but about half of my yard cut down enough, and I had to stop.. the sun was coming up over the trees and I sure as Hell do not need another LUPUS FLARE!!!

So, now my front yard is "half chopped down"... me and the weed eater have heck... it is not all that heavy, but my arms are so weak after surgeries and so on, so they were like "jelly" by the time I got a bit over half of the really tall weed mess down... I am so in a pissy mood... I am so pissed that "someone" else wanted ALL of this, home, lawn, wanted to "remodel" and now who is stuck with it half assed remodeled and now going to have to do as much myself, and then I guess hire the rest out... and I guess someone thinks I am "rolling in the bucks"... NOT!!! REALLY????!!! Plus I am sure just like the injections a few weeks ago this trip Friday will be 250.00 my co-pay... I got to thinking the other day and thought, well, I can power wash the house, and get windows redone, and paint the back bedroom... and paint part of the outside... and then get someone to lay the floors where I need them... bathroom, kitchen and finish out my laundry room.. but I still need my lights and a fan finished as far as the electrical part... they are partially done, but SOMEONE never finished those, nor even "mudding" the bathroom... and I can't do "mud"... I mean sheet rock mudding... lots I can or used to be able to do... but some of this is beyond my body's limits for sure.... so needless to say, I am in a pissed off state of mind, about this entire ordeal... but it will get done one way or the other... because I DON'T GIVE UP...

Wednesday, June 10, 2015

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.


We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.


So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Monday, May 11, 2015

"WAAD 15" World Autoimmune Arthritis Day beginning Friday! Pick your team and Join in on the Fun!

World Autoimmune Arthritis Day's 6 day virtual, online car race to collect resources anraise MAJOR awareness for autoimmune arthritis diseases is just 3 1/2 weeks away- please share this poster, print it and give to your rheumy, use it to personally invite friends, supporters, those in your community groups. The event will happen HERE on Facebook and Twitter, along with some internet navigation and sharing of awareness submissions on your own pages, so plan to tune in!
More about how it works:
1. The Race Cars will represent each nonprofit from around the world that has officially signed up to participate. They will be the Nonprofit Race Teams and will compete against each other to "win WAAD15". Winning is based on who gets the most mileage points, but they need YOU to earn those for them.
2. On May 1st registration will open at www.worldautoimmunearthritisday.org. It's FREE to register, and while you of course can play along without registering, if you do register you can help your favorite nonprofits earn mileage points AND you can earn your own mileage points too. The top 5 registered participants will qualify to win prizes of their own! Register solo or get a group together and play as a team (more details will be posted on this soon). During registration, you can pick up to THREE of your favorite participating nonprofits to support and 'race for'; each of those nonprofits will earn 25 mileage points for your support.
3. On May 15th, at 12pm ET/USA, the race will begin RIGHT HERE on this page and our Twitter page @WAutoimmuneAD. All participating nonprofits with Facebook and Twitter will also post that the race has begun and provide instructions for those just tuning in.
4. Also on May 15th, time TBD, there will be a special post for memoriam laps, where we as a community remember those we have lost to these diseases. We will ask all people to share and add names of those you are remembering to the post.
5. Those registered to race in honor of nonprofits will receive, via email the day prior to the event, the official Global Race Map, which gives times of posts, where to go learn more about specific subjects, details about all the Detours (live webinar chats) and how to register to attend those, and detailed information about the live awareness activities-including when they will post and what they will be. All others can receive this information at the WAAD website after the event has begun.
6. Nonprofit Race Teams will also earn mileage points when you "like" or "share" the posts or tweets from their account or when you do awareness action items in their honor. Registered participants will also earn mileage points for posting/turning in awareness call to action items.
7. In addition to the live social media action, including sharing up to 6 resources from EACH of the over 30 nonprofits participating and several live Detours (webinars-subjects and hosts announced soon), there will also be a page where you can submit information about good practitioners (any specialty) in your area so that we can create a map that will be available year around on our website.
8. The race will end on May 21st at 12pm ET/USA when the checkered flag waves. The top 5 Nonprofit Race Teams and the top 5 Registered Participants (individual players) and top 3 Registered Participant Teams (signed up to play together) will be announced. Trophies/plaques will be sent to the winners, along with select prizes.
Nothing like this has ever been done but we can use this to push autoimmune arthritis into the forefront for 6 days. Are you with us???


 

Friday, May 8, 2015

I continue this ongoing saga of Lumbar spine issues, bad weather that I am SICK OF, am Happy to see more people coming to my blog, and things about Autoimmune and Arthritic Illnesses

Well, here I am again... another weekend that "appears" to look like all hell is going to break loose. Which again is really irking the crap out of me, because I do not want to have to POSTPONE yet another trip to the Casino!!!

I've already been through this a couple of times, last weekend, it was supposed to be "earth shattering" weather and it did NOTHING.

Now here it is Mother's Day, and again the forecast (extended) is showing rain, rain, rain, storms, floods, and more crappy weather.

Actually, I went, got out my brand new white jeans that I've been wanting to wear, and they still have the tags on them. I also have a beautiful top that just looks awesome with them, plus add in my rhinestone studded sandals, a bit of makeup, a necklace and earrings, and I am set to go to Winstar!!!

Well, I call my Mom, and she has not even "given it much thought" of us going. Yada, yada, yada... about how bad the weather is supposed to be Sunday, and thinking we should postpone... well now we are looking at much later in the month, when I had doctors appointments in Dallas - two of them back to back on the 20th and 21t! Neither of which I can miss at all. One is to have my pain pump refilled, the other is my very LONG AWAITED getting to see my Rheumatologist again. It has been months and month, and months since I saw him. In fact due to something, in fact, I believe I had double pneumonia and was supposed to see him. I had to reschedule and the other appointment was like in December of 2014!!! So, it has taken me patiently waiting now for 6 MONTHS just to get into see him. I can see his PA of course much sooner, but seeing him, especially since we are possibly thinking of a medication change... I MUST NOT miss this appt!

I am NOT happy about this "discograph" business. From all I've read it is NOT a "comfortable" type of test. It is also much more invasive than having epidural steroid injections. So, that raises the risk of a spine fluid leak, or infection more than the injections. I see that depending on the scan and how far it needs to go, it can be anywhere from an hour to 2 or 3 hours, depending on what all the doctor orders. I know Medical City Hospital in an Excellent place. So, that in itself does not bother me. But, anytime now when you have a "compromised" immune system, whether autoimmune related, or whatever the case may be, you really are trying to "avoid" anything that could have the potential of causing infection, especially into the spinal fluid, blood and so on. 

When you are sick, the hospital is the very place you want to avoid usually. Because the others around you maybe having many more types of illnesses that could potentially cause a worse infection.

I've not really had many issues, as far as surgery goes. I usually do well under anesthetic. As far as a surgery, I have not had any massive complications. Yet, when you combine the AAI, the prednisone, the Orencia, and other meds I must take, then there is the rise in whether an infection could happen, rather than someone who does not have immune issues, or is not on medications that could cause you problems later.

I also know this is going to be one of those types of tests that no matter what I already have had done in the past 6 weeks, which was the CT Scan and then the epidural steroid injections into the Transforminal space around those vertebra, that shows that is the place of issue, this doctor STILL is going to insist that I have this other stupid test done.


Of course yes, I could "find" another surgeon. Well, that could lead to the exact same situation, and also could lead into me not having the "best of the best" as far as my Orthopedic surgeon go. He is the one that truly remedied my shoulder pain and my neck pain. Without him, I honestly don't think I would have made it.


To me, he is the "gold standard" in surgeons for these types of problems. Although once again his bedside manner is about like a jackass, and he is an argumenative, and thinks he knows absolutely everything, and patients as far as he is considered need to "follow his rules" and NOT try and tell him anything you may know.

So, it is trying to decide what is worse to deal with when it comes to having him as an Orthopedic Surgeon.

I've got to go to get dressed and run to "Wally world". I need a belt to go with some white jeans I would like to wear, thus there is about the only place here to look. Then I have to run Jim over to the Clinic in Waxahachie about some of his meds.

More to come.....


Tuesday, April 21, 2015

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

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

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

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

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

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

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

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

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

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

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





Saturday, April 18, 2015

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!!!









Tuesday, April 14, 2015

Sharing" Anothers Bloggers Post - and the Pain that we often fall short of talking about... that relentless endless, intractable PAIN

The link to the post is at :

https://www.creakyjoints.org/no-good-lessons-learned-hitting-ra-pains-rock-bottom/

It is from a "Creaky Joints" post...

RA pain’s rock bottom: NOT a ‘pain made me a better person’ story

 

and it is by: 

Tuesday, March 10, 2015

Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....


Sunday, February 22, 2015

Medicare Reform - NOT for Just the "Elderly"!

I join in this for several reasons. One of which is that even though many of us at the time when we are much younger in life, never think about needing your Medicare and Social Security benefits. You are working, raising a family, and everyone seems "healthy"... so needing something such as Medicare does not even probably come up unless you are talking with your parents, the elderly people, on TV or in the news. BUT, I can also attest, you NEVER KNOW WHEN YOU will be the one that needs Medicare... and not at 67 or so but at 35, 40, 45, 50 get my drift??? Life can turn on a dime, and all of a sudden you are saddled with a chronic illness that no longer allows you to work. So, where do you go? Eventually you may lose out on your insurance as far as health wise, and possibly not be able to even make a living, much less pay for high medications, doctors, tests, hospital stays... and you are in a place of living hell!!! It can happen and IT DOES HAPPEN!! I am walking (sometimes crawling, Living PROOF) that life is not always what it "should be".. or what you thought it would be... withing a breath's space, things can change... and when you are needing Medicare the very MOST in order to just have the vital doctors and medications to sustain you... and medications run 1,000.00, 2,000.00... or you have MANY 20 or more medications some of which are 300.00 or more a MONTH!!! There is NO WAY most anyone can afford to pay out of pocket... so we need change.... change for the ones growing up and working now... in order that when they retire, Medicare and Social Security is still there for them. OR in a month, or year, or a few years down the road when all hell breaks loose, and you find yourself too ill to work, too broke to afford health insurance, and you need "those Medicare benefits"... that is when it will dawn on you... Gosh I wished I would have stood up for CHANGE!!!!!

These three posts are what I sent in Facebook and in Twitter to my House of Representative Member and my Two Senators.... it is time to take up the lead and make change for the good of all when it comes to Medicare!

WE must stand up and let our Congress officials know how we feel when it comes to our health concerns, and how Medicare needs to be fully reformed, and will be here for many many years and people to come. We deserve great care, and our physicians and medical people that DO A GREAT JOB should be taken care of. Those physicians and other medical "professionals" who are not willing to be there to truly HELP patients don't deserve extra benefits or compensation. We have a GREAT DEAL many AWESOME DOCTORS WHO GO ABOVE AND BEYOND THEIR JOBS FOR THE PATIENTS!






Sunday, February 15, 2015

Dealing with Aging, Chronic Illness and Another Birthday today!

All of us have to deal with aging. It is just a fact of life. If we are here on this Earth, we naturally are a tad bit older each day.

I am dealing with my 55th birthday tomorrow, Sunday the 15th (almost a Valentine's Baby). I always have a difficult time dealing with how quickly these birthdays seem to come around. It feels like I just celebrated one, and here is another one popping up.

When you have a chronic illness (es) and/or are living with chronic pain, I feel you have more of a feeling of "desperation" as the days go by. It is of course a known fact, if you are chronically ill, with just about any type of disease, that can lessen your life span depending on which illness, and how well it can be managed.

So, with someone such as myself, dealing with Lupus, RA, Sjogren's, already having two heart attacks, etc. the possibility of me living my life out to my 90's or less can be something that you have to admit may not happen. No one wants to think about growing older, and then passing away. We have so much LIFE to live, none of us want to check out of the life hotel, before we have completed all of the things we want to. Maybe it is to see your kids, grandkids, and great grand children grow up. Maybe you have things like myself, a blog, a book to write, people to see, family that you of course don't want to leave, and hobbies, activism, volunteer work, traveling, just the daily parts of life such as they are. with Autoimmune Illnesses, days may not be the greatest. You have some that are full of pain, and you would prefer not to deal with. Yet, you usually would rather deal with the pitfalls of chronic illness, than the opposite, which would be to pass onto another life.

I didn't get to finish this post yesterday, so I will finish it off for now with what I have written on Facebook this morning. I am so fortunate to have so many people around the globe that lift me up in faith, hope, and prayer... and I want all of them to know how much they mean to me.

This has been such a wonderful day so far. Other than waking up early this morning with a freaking horrid headache, that then upset my stomach as usual, I am having an incredible birthday! I went yesterday and got 3 shirts and a purse at Beall's for less than the price of the purse itself! I had a gift card from them for my birthday, plus some other good coupons. Then Mom and I stopped at the Dairy Queen and got burgers and fries. I brought ours home, so that was Jim and I's Valentine Day special. :):) Mom gave me a beautiful card, and what she wrote in it brought tears to my eyes. She has always been here for myself and for Jim, especially after the accident. Then Jim's Mom also sent me a card, and money! :) I had ordered something on Amazon that usually I never would have even tried, but it came in yesterday and they fit perfectly! I got 5 new bra's in the colors I needed for like 25.00! Plus Jim gave me a beautiful new robe this morning!!! I needed it so badly. I was ashamed to even wear my old one, it was definitely worn out.... then I got a call from Amanda Batson- Matheny​ and a bit later from my son Jason Harber​ which made my day to hear their voices and have them call was a wonderful treat... I also went and got us "no-no's" as I call donuts... we have a place just a few blocks away, and I could sit there and make myself sick, eating them. They are so good!!! :):) We were supposed to head to Winstar today. But, the weather is supposed to begin getting lousy today, and it is already really cloudy, and we are expecting a high chance of rain today and tomorrow, plus colder temperatures. So, we decided to wait to go the the Casino when the weather is a bit better. Driving in rain does not bother me if it is not too far away, but being with the idiots going through Dallas in the pouring rain, is not my biggest thrilling adventure! So, the rest of my day will probably be just relaxing with the pups and Jim. Probably going to watch a movie or two, and other than that, try and put all of the "everyday" worries aside today and not think about all there is to do, errands, running here, there and yonder... but just have a day of peace with these 3 I have so much joy with ... the pups can make us laugh no matter how lousy we feel, or how badly the day goes. Bubba Gump will raise up on his hind legs, with his front paws down in front of his face... and those big eyes just saying Mommy, rub my tummy... or the way he loves to watch television and movies. Tazzy, bless her heart, can still do some things to make me laugh... but she is really beginning to get a bit "feeble" in so many ways. She is I believe 11 years old. Jim gave her to me as a Christmas present while we were living in Seattle. That was the Christmas of 2004, because she was a year old when we got to TX. So, time has also flown by with her. It seems just yesterday, I was visiting her, with her brothers and sisters, trying to decide which puppy I wanted. She came running to me, not bigger than my hand... then ran over to Jim and began to give him kisses. From there we knew she was the one!!!! :):) She was not even old enough for me to bring home. I had to wait a week, and she got her last puppy shots, then we picked her up the next Friday night, just before Xmas. Life has just passed by so extremely fast. Day will have passed away 10 years ago on the 27th of March. Mom will be 80 in August. And Jim and I have been together now for 12 years, and will be married in April 10 years. I would not have missed one moment ever so far in my life, and I am so very fortunate to have family, a spouse, two pups, and so many friends to keep me from going insane at times. You each bring something special to my life, and even if we never were to meet in person, which of course many of us might not, you are still as much a part of my life, as if you were right next door... thank you... each and every one of you, for giving me strength, courage, hope, faith, and on the right path in life... I am blessed and overflowing... Rhia