Monday, September 28, 2015

#RABLOG WEGO Day 7 - Great Blogs I have read!

Wow, I've read many great blogs and blog posts through my years of ever evolving RA, Lupus and more, when it comes to Autoimmune Illnesses and more...

Even though she had Still's Disease, many of our AI illnesses are so close together, or we have had several different diagnosis' along with way.... I think Kerry had been diagnosed with JRA at one time...

Another One:

(Which Used to be RA GIMP

a #3rd one:

#4 -

#5 -

#6 -

I just wanted to say, that I know there are others I want to recognize.... I just had something very important I had to help my Mom with... so I will be adding to this list of Blogs that truly "talk and touch" me... I have NOT left anyone out on purpose that is for sure. :)

As I said yesterday, I want to add more to my "list" of blogs both RA, Autoimmune, & a combination of health related issues. Some of the list on the front page of my blog, I noticed have changed URL's and so forth, so I will get all of those updated too. I want other to be able to enjoy each and every one of you and what you have to say in your blogs... about life, about RA, health, emotions, the physical, mental and in all ways we are effected by these illnesses... there is Sjogren's that many know little about yet it can and DID WRECK my life and my teeth! I now have a full set of dentures due to Sjogren's It is critical for ALL of us to speak out and gain attention so funds for research, medications, new doctors, and all can be gotten.... and WE are the perfect voices, because WE are the ones suffering daily.....

I have a "personal" issue (hopefully this will be the last major one for awhile) to get to between now and Thursday afternoon.... once all of that is behind me, I hope to update my own blog, and some more of the advocacy, activist, Ambassador's, Volunteer and more things that I so enjoy as well as finish my BOOK and work on my blog!

Sunday, September 27, 2015


Every person, male or female, whether that are our youth of the nation, or our 30's through 45 generation, and then from there 45, 55, and more all FIT into a Autoimmune, or arthritic diagnosis; OR as for myself as well as many, have had several different diagnosis and it changes depending on the way the "wind blow" so to speak!

In other words, age, gender, nationality, none are "immune" from suddenly and unexpectedly to hear the words, you have Rheumatoid Arthritis, and/or Osteoarthritis, which often plays into one another.

Honestly, I had suspected some type of autoimmune illness with me, probably 10 of more years before even really getting "tested" for them. In fact, it was my current PCP, who had just moved to our community from East Texas, and he is as sharp as a tack. I was one of his 1st patients, and from day one I was "hooked" with him being my PCP. AFTER, I already had several arthroscopic surgeries on both shoulders, my left carpal tunnel surgery, and the went through two total knee replacements, along with all of the various reasons I had been in to see him.... he told me he was going to run a huge "battery" of lab work on me. Some of it may take weeks to get back but I already had mentioned "autoimmune disorders" even before we began the lab work.

both of us were right, when those somewhere around 18 TUBES of blood they took from me finally were all processed, the findings were a direct autoimmune issue(s)...

From there it was a whirlwind of finding a Rheumatologist, and my 1st one, Dr. Rosenstock in Duncanville, as elderly as he was, turned out to be one of the best Rheumatologists I saw back then.

He was about 80 plus years old, and in fact, had a stroke not long before I went to see him. But, he took a very good once over of me, and told me, my toes, and fingers/thumbs, and other places especially where joints were showed signs of damage. He also told me I had Raynaud's, and I had a "hyperflexibility" of my joints, which also causes joints to be "over used" because they tend to go further back than a joint that is normal. I felt I had "undifferentiated autoimmune connective tissue disorder" and felt like as time went by I would be diagnosed with Lupus, RA, Sjogren's and so forth.

He was correct. But, as much as I appreciated him and truly felt he was an awesome physician, he was "old fashioned" and did not believe in "biologicals". In fact he still gave "gold injections".... which were used for a long while before many of the other meds became to help with these AI illnesses.

So, I went through an emotional, mental and physical battle trying to find a good Rheumatologist, and it took going through about 7 before the right one finally appeared. He has been taking care of my RA now for about 7 years or so.... and in actually my PCP takes care of my Lupus, mainly due to him being right here in town a few minutes away, and he can see me immediately when I am having a bad Lupus Flare....

I went through almost a grieving process.... first I was so totally forlorn, then I did not want to believe it was true, and then I was just angry about all of it.... insurance, doctors medications, pain doctors, then surgery after surgery all due to the deterioration of my joints due to RA/Lupus and osteoarthritis... and yes to boot, I have osteoporosis, which adds to the "fear" of all of it.

In time, and at times, first I kind of settled into the fact I was chronically ill, and in chronic pain.... yet I still fear certain symptoms and so on, just to me having several very critical times within the time of being diagnosed with RA and so forth....

I had hoped with time, I would regain more "life", more energy, more things that truly would make me happy, yet, I can day I am "not full of life" as I once was.... and all too often days are a struggle in one way ot the other.....

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

 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....

Saturday, September 26, 2015

A bit "Off subject" But I have to share some wonderful News!!!!

My Granddaughter is a SENIOR this year down at Agua Dulce
High School which is close to Alice TX and about 30 minutes fro Corpus.

She is an amazing young woman. She has played Volleyball, Basketball, been Cheerleader several years, and more. She also was honored to be inducted into the National Honor Society, and I believe her plans are to be in the medical field.

They had their Homecoming Last Night like most High Schools did and she got to be DHS SENIOR 12016 Football Sweetheart!!!! I am so totally proud and thrilled for her.

She has worked hard all through school to keep her grades up, participate in lots of activities and be ready for college which will be here before we know it!

So, before doing my next Blog Post for the RA blog, I wanted to share this news and a few photo's my daughter had of Heather and some of the other Seniors and friends,

Friday, September 25, 2015

#RABLOG Post WEGO Day 5 - Your Favorite Exercise and How to try to stay in Shape

For a huge many of us, even those without Chronic Illnesses, joint problems, RA, Diabetes, and the list goes on, we DO HAVE problems finding the proper exercise that fits into our "health problems", that gives us enough exercise to get the heart rate up, curb the fat intake, and keep muscles in tone, and help to keep our bones in much better condition also.

I have to admit, all the time I was in Jr. High and High School, I was never one for working out, being in Volleyball, playing Basketball, or playing in Little League. Throughout the most of my younger years up until about the age of 21, I had a weight problem. I was not just hugely obese, but I did have more weight on me, than someone with my build and height.

I also had actually while playing baseball with my friends and cousins at the age of about 14 years old, was used for "2nd base" rather than the base itself. I had a very severe tear of cartilage in my right knee. It got bad enough, that I could not participate in any type of PE classes, and that next Thanksgiving Holiday weekend, when I was about I guess 14 or 15, I was in Baylor Hospital, the children's wing for Orthopedics.

I spent 7 days in the hospital after having a very huge surgery at that time (it meant cutting along the inside of my knee and the scar was about 8 inches or so long. In fact my Dad came and ate Thanksgiving Dinner with me, since everyone was at my Grandparents having a feast, and he dd not want me to be alone. The funny thing was, they brought 2 huge plates with all of the Thanksgiving fixings on them. But, they accidentally left the slices of turkey off of mine... it was so funny! But, that right leg, was in a full cast that as from my toes all the way up to my hip as far as they could get it. I was in that hot thing (thank goodness it was Fall/Winter, for over 3 months! My Orthopedic Surgeon, who did work on the Dallas Cowboys at one time, did an excellent job. They had done a special type of scan the night before, and he feared I may have some type of a tumor in my knee. He was not sure exactly what it was, thus the morning they rolled me into the huge OR, I had been told, I may come out and not have all of my leg left. If it was "cancer" then they would have to remove as much as they could in order for the cancer to not spread.

I came out fine and the "lump" formed due to the damage in my knee. In fact, before the surgery it had gotten so large that my muscles on the side of my knee would "jump" over that lump. So, I spend 3 months at home, no elevator in our old 3 story, plus a basement high school. So, Mom and Dad picked up my books, and lessons, and then turned them in for me each week.

But, that one incident put me on the road of having to be cautious the rest of my life about what type of sports I played in, or anything that I may put a large amount of stress on that knee.

I went ahead to snow ski for several years in my late 200's and early 30's. I became an AVID walker, and walked at least 5 miles a day, 6 days a week, and sometimes 7 days a week. Then as the years past, the lawn work, gardening, even snow skiing had to come to a halt once I was diagnosed with SO MANY joints in bad shape. I had a left elbow and shoulder surgery in my early 30's. I also had the left knee with torn cartilage and had to have surgery on it. Then I had rotater cuff tears, in both shoulders, a couple of times, thus I had arthroscopic surgery on those at least 2 or 3 times each. Then I needed both wrist fixed, both with carpal tunnel, and chose to have the left one done, then so many other things developed, that right wrist was the least of my worries health wise.

This was about the time my PCP after seeing me for months, following all of my joint problems, labs that came back "odd".... he did a total screening for ALL types of autoimmune illnesses. His guess was right on the money. I had RA, Lupus, later came Sjogren's, also Raynauds. I also have Degenerative Joint and Disc Disease which also contributed to more surgeries, than I could even count.

In 2007, if my memory serves me, I had 8 SURGERIES, that one year! Finally ending with both total knee replacements, then after several scopes, I had a complete "reverse" shoulder replacement of my right shoulder. I've had gallbladder issues, and had that removed, and in which complications sent me quickly to Dallas at the Methodist hospital, where I spent 6 WEEKS, and they never really "got" exactly what was wrong, and at the end of my stay, I had a 2nd heart attack, before leaving the hospital.

I've had to have a 4 level cervical spine surgery, replacements and fusions, my hips have been injected with corticosteroids numerous times. I recently had DOUBLE hernia's that required surgery, and in the middle of all of that, I lost ALL of my teeth to Sjogren's. It took over a year to get the bad ones out all the way and then get my dentures in, then wait to have the bottom ones "mini pinned" in.

So, after all of that I am sure you are wondering what the heck does that have to do with my "exercise" program now?

Now, I walk daily. Whether it is outside, around my long driveway, or around the house looking things over and making sure all is okay. I also try my best to do ALL that I can on my own at home. Whether it's vacuuming, doing laundry, cleaning the floors, cooking, cleaning, errands, some light gardening in the cool mornings or late evenings. I have a pedometer that I try to keep up with my "up" times. And I've found, as far as keeping in good shape, physically, mentally and emotionally, just being outdoors, looking at the trees, birds, waving at the neighbors, and so forth those are my ways of staying in shape.

I even cut smaller tree limbs when I can, or put leaves in a pile and use the trash can lid to help scoop them up. As I said, I have learned to "improvise" in many ways, yet the challenge of opening a jar lid, or getting on a chair or stool to put things in the upper pantry, or whatever the task is, if I feel like i can at least do some of those things, the less I feel depressed, I feel even though fatigued, especially if I overdo it, yet it is often a "good type" of tiredness. 

So, whether I am outside trying to clean flower beds, and walk all over my small bit of land in the back, or make 20 or 30 minutes around the driveway, to keep I am less stressed, more energized, and I feel at the end of the day, I have "accomplished" something worth while that day.


Thursday, September 24, 2015

#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.

#RABLOG WEGO 3rd Day of & day Blog Week - Telling Someone about Your RA

You may have heard someone talk about having moments where they feel as if they are "looking down" on themselves, as if they were watching their life, yet did not feel they were really living in it?

Or have a feeling of being "detached" from the world and everyone around, as an observer, rather than participating in the goings on in daily life...

This can be known as a mental disorder, if it is always going on. If a person feels always detached from living, like it is a "cartoon" or perhaps you feel not seen nor heard but you can watch from above and watch life take place.

In The Psychological World it would be known as "Detachment Disorder", one of the Personality Disorders people can have.

Well, in a way, this is almost what it feels like to have a chronic illness such as Rheumatoid Arthritis. Especially in someone that may be just diagnosed with the disease, or has not had a great deal about RA explained to them, or have not had the time to research and find out more how RA effects the body, plus the mental and emotional realms of daily life. Often I've felt as if no one else could ever "get it". They could not possibly have an inkling of what I felt. I felt all alone, and almost like I had something "mentally" wrong, as in having some type of personality disorder such as this.

At first, I could barely understand all of the ins and outs of what RA can do to the body, plus it can have dramatic effects on just how you feel about living with it. You can often feel physically so lousy, thus you do not want to see others, or try to explain to them what RA is all about. FEAR, ISOLATION, feeling that you are ABANDONED, that your loved ones may think you are lying, or that you are just making all of this u[p to get attention.

Embarrassed is yet another part at times of having RA, and/or other chronic illnesses. You do not want people to look at you like you are sick for if they see you as "RA" the disease, it maybe they "feel sorry" for you, or think you can't do things with them again.

Each and every emotion that you feel in "grieving" you can also feel in RA. Angry, frightened,depressed, thinking it is wrong, you cannot possibly have such a horrible illness, resentment, trying to even "bargain" with Your Higher Power asking Him to take this away from you, or asking WHY ME?
WHY do I have to be SICK?

Those and more are all of the "feelings" of RA for myself. At one time or the other, I've felt each of them, and at times several of them at a time.

I even sometimes feel like a "lab rat"... I guess you could medication might" stick and make you feel better. But, you may feel better in one way, then suffer from side effects that are worse than the RA itself.

You often wake up aching, throbbing, in several joints, and some days all over. I find it difficult some days to even think about needing to do some things I used to not even think about... cleaning, dusting, running errands, going out on a weekend. Yet, with RA, you have these feelings of what do I HAVE TO DO today, and what can I postpone until the next day? So, you slowly wake up, try to begin to move around and for me, then I go straight to the morning medications, taking them hoping that some of the fatigue, the pain and stiffness, the brain fog, and other symptoms will at least lessen enough for me to get through the day and do what I need to get done.

To have RA, is like having your life turned upside down, and then having to learn how to have a totally "new life normal", for all that you did have that was normal before RA, for the most part has totally changed. 

Wednesday, September 23, 2015

#RABLOG WEGO's Week long RA Blog - Day 2 - How to "fight" RA Fatigue

This is one tough "cookie" so to speak. Some of us battle more often than others I am sure.

Those days when I get up and feel like an "18 wheel tractor trailer" ran over me and then backed up and did it again. There are times, that I try to just push through the temptation to get back on the sofa, and watch movies all day long.

Yet, life some days, even with chronic pain and chronic illness may not allow a day to "hide out". So, those times that I KNOW I am going to have to be up and about, I try to "plan" for it ahead of time. You can't "plan" the fatigue, but you can plan a time before you may suspect a very busy day, and that fatigue can come with those days. So, I tend to try and get to bed or at least relax a bit earlier that afternoon and evening before.

I try my best to find ways to doing some things either  during the time of day that I feel "less fatigued". O if I know that I have something that will take more energy than "usual" I try to rest the day before, or sleep by going to bed a bit earlier.

I also have found to make doctor appointments, or anything type of appointment where I need to go here or especially in Dallas, to make them between about 11:00AM and 3:30 PM. That way I can avoid that "fatigue" in the morning, and yet not have to deal with the more fatigue that comes on after a busy day... around 4:00PM.

I also try my best to "combine" things. If I need to stop at several places running errands, I plan my route where I can do the one that is further away, then work my way in to the closer things, so I am close to home as possible after I finish. I also at times have to do part of errands, shopping, house work and so forth and then finish it up the next day. If I have a large amount of groceries to buy, then I do that one day, and save the other errands till the next day. Plus if I can possibly get medications by "driving" through a drive through window, or even at the bank, I try to use the drive thru anytime I can where it is possible.

When the days are very hot, or I am just not feeling well, or fatigue has got me badly, then I use my Handicapped parking sign. That is a huge help especially at a very large store, and especially if I am having to buy things that are heavy.

I find also, if I stay "moving" once I am up and around, I am better off "finishing" up all I can before i sit down. If I sit down before some things that need to be done and rest, then it seems I am more tired and fatigued than I would be had I just finished everything up and then sat down to rest.

I keep myself on a set schedule as much as possible, as far as eating, sleeping, getting up and all. If I stay on a schedule, then it seems that also helps to fight the fatigue...

Of course there are times when it is just TOO much, and the fatigue just puts me down for the day... and if that happens, then I listen to my body, and I "take that day" or a portion of that day to give myself the "relaxation" it needs....

I can say also, that "mental and emotional" stress brings the fatigue on worse than ever for the most part... so trying to keep an even keel emotionally helps, but of course we are humans, and we have stresses to deal with... 


Tuesday, September 22, 2015

Am Torn to Shreds mentally and emotionally..... the Loss of a Dear Dear Bestest Friend my Puggy - Tazz!!!!

I can't begin to tell you that my bestest friend in my life my Puggy, my Tazzers, my Mo Mo she has several nicknames passed away this morning...I can't even bare the thought of losing something once again, I love more than life itself.... God promised me last night she would be okay... she seemed very weak yesterday and was acting like she was not feeling well at all, or even breathing late last night as she should.... I took her to the Vet and her blood work was "off"... so I am supposed to take her today for more labs.... last night, I held her in my arms and rocked her and sang the songs I always have sang to her and her brother Bubba.... and I did not sleep all night... I kept telling her that she would be okay today.... that God would heal her.... I cannot do this anymore.....I can't stand another broken heart.... why, why WHY was she taken away from me? Her, Bubs, and me were all together here and happy.... I can't understand why something like this happens, she never hurt anyone, and from the moment I saw her at 6 weeks old... and had to wait a week to get her... she needed her other shots.... and that was in Everett WA - she was the best Christmas present I could ever hope for or dream is just too cruel.... I don't want to live without her.... I love Bub's so much too, and he is also a light in my life.... but she was and is and always will be my baby girl... I can't even stand to move her... she is on my sofa in her favorite spot, wrapped in the blanket I bought for her the night I picked her up from the lady that sold her to me... I feel like pieces of me are dying also....

I just cannot even find the words to say how upset I am... and now my Mom's not feeling well, and has stomach issues and so on, that have been going on now for weeks... at first we thought we had a stomach bug, that had been going around... but that was at least 6 or 7 weeks ago... I am not all the way better, either... but my stomach is "weird" often just due to medications and so on.....

I did not get to post my RA Blog Wego post today,...I began writing it, went to check on my dear sweet Tazzers... I knew she was not well, and I was supposed to take her back today for more blood work.... and I prayed and prayed God would help her to hold on, or help her heal before it was too late..... I am worse than heartbroken and shattered at this moment......

Monday, September 21, 2015

#RABlog WEGO RA Blog Week - 1st Post September 21st,2015 - A Morning or Day in the Life of Ra and Me, Rhia

 Just as anyone on a "normal" Sunday morning, that goes to a worship service, or attends some type of Church, Sunday School Class, and Fellowships with those there, I begin at the moment my eyes pop open.

At times, even just before really being wide awake, the pain begins; along with the stiffness in my fingers, wrists, hands, ankles, toes, and now my lower lumbar/sacral spine. My first "event" is to get my green tea that is in the refrigerator out, and take my pain medications, along with a muscle relaxer, Meclazine to settle my stomach from some of the "dizziness" I often have, due to double vision, (doctors think from the RA/Lupus), and the feelings as if "I" am moving. Some may call it a form of dystonia. It gives me vertigo, and without my daily medication, I would look and feel as if I had not "control" over my body moving, swaying, and sometimes if I am sitting, I almost "gyrate" from the waist up.

I have a couple of other medications I also take with those, and those are just a few of the many prescriptions and over the counter medications I take daily. My mouth is just as dry as the "Sahara Desert" as the saying goes, from the Sjogren's, which usually can come in tandem with RA, Lupus and so forth. So, I try to drink some iced green tea, and get myself awake enough to decide what to wear and so on.

I used to be able to get dressed to go just about anywhere in an hour or less. Unless it was something extremely dressy and formal, an hour was more than plenty of time to get ready.

Now I must plan to take at the very least over an hour and that is not counting the shower I had the night before. I used to take a shower the morning of what I was doing. Now, I usually have to shower that night before, or by the time I take a shower, dry my hair, do my makeup, get my clothes on, jewelry on, and have everything done, I would be too exhausted to go! Kind of like the "spoon theory". I have so many I use for a day, and just showering, dressing, doing makeup. hair, and jewelry/accessories, would use up over half the spoons for the day. I have had to learn to get as much ready the evening before as possible, so I am not completely worn out by the time I am prepared to go.

I usually take a short walk outside and around my home after I get up. It is usually quiet time, and I just take in the sounds of "nature" all around. Then it is in to take ALL of the medications (not counting the ones I take almost before my feet hit the floor). Then I have my two pups, and I give them their medication at the same time. From there, depending on the day of the week, it may mean collecting all of the trash cans, getting them emptied and out to the curb for the trash truck to pick up. Or laundry to do, depending on how much I have, may need to be done. There maybe errands to run for myself or my Mom, picking up medications, going to the market, or any number of things that may come up in a day that I need to take care of.

I feel like I spend more time either making doctor appointments, going to doctor appointments, getting prescriptions refilled, picking up medications... and life some days seems to evolve around something "medical" in nature.

Even down to what I may decide to have for my meals that day. Cereal usually follows my morning medications, especially during the hot months of the year, and usually warm cereals, oatmeal, or cream of wheat are my breakfast picks in the winter. I on occasion on the weekends will prepare a "big breakfast"... like eggs, biscuits, turkey sausage or bacon, and even grits, hash brown potatoes, or cream gravy and at times I make pancakes. But, since for the most part my stomach does not "hold" very much food at a time, I stick with breakfast less filling.

When I stop to truly think about a moment of time in my life, whether a few hours, a day, week, month and so forth, honestly something about an illness or disease is never left out of the equation. I have to always consider how I "may feel" physically before making any definite plans. Even then, it could be I wake up on that day, and must either postpone or cancel something, because I am not feeling well. I feel as if my "body" dictates what I can or can't do any moment of my life. Everything seems to evolve around how I am "feeling".

Chronic pain and/or chronic Illnesses, all too often "rule over" and "take over" your life. They challenge you, they can come on and knock you to your knees when you least expect it. 

Each day, each moment, each breath that passes can mean a fine line between feeling "well" and being very critically ill.


Saturday, September 19, 2015

Pain Awareness Month and Suicide Prevention Month - Do We think about just how badly chronic pain can be and for some, almost to the place of not being able to live with it....

This is so well put! WE, many of us, with chronic daily pain, the kind that without any treatment would leave you in bed, on the sofa, and without ANY quality of LIFE!!!!! Yet, those FEW who choose to "abuse" medications, cause a ridiculous amount of questioning, hoop jumping, "looks at us like we are "addicts" " and even many that all of a sudden can no longer GET their meds... as she put it... to HAVE A LIFE  ... we do not use meds to "escape" from living... that in itself was one of the best ways I've heard to speak about the people that abuse medications. But those that do cause harm by their own abuse, and making life almost unbearable for those that do everything correctly.... just to as I say, and the article says to have "life"... NO PAIN medication EVER completely takes pain away.... it makes us "able to deal" with the pain better, when it is "less" than unbearable. I have an implanted pain pump that my Pain Doctor implanted in 2010... and we have "tweaked" the medication in it over the years, if need be. But, I still have a script for "back up" pain... maybe I am having more pain than usual from a weather change, or from doing something in my daily life that may exaserbate the pain at times. Yet, nothing takes it away... it helps me deal with what is pain remains... it allows me energy to DO my errands chores, go out for a day to have a bit of "off time" and so on.... if it were NOT for my pain medications, I would almost be to a place that it would be "intractable"... more often than not... and in fact, due to a lower back lumbar/sacral problem, there have been at least two times in the last 3 years that it was like I have NO PAIN medication at all.... In fact I even went through and had a talk with my pain doctor. All I wanted to do it sit in the floor and cry, the pain was so horrid.... I went that way for weeks... and we found the problem... and now due to this abscess I am still not able t0 have surgery... but at times even with what I have, it can be to the point you wonder if you are not just going to go insane from the pain.  So, each time I see or hear about how many "abuse" medications and all they want to do to make it almost impossible for us to get our medications, it just infuriates me... for ONE DAY I would like to "hand over" my pain to some of those that think it is all "bull" and let them walk in my shoes for 24 hours... I wonder how they would feel, when they awake to stiff, swollen, throbbing hands, knuckles, feet, ankles, hips, pain down my leg, severe headache from Lupus... and see how long they could "tackle" the pain without any help from medications... If you gave them a week, I bet 95% or more of them would be begging for relief..... And I have had several people over the years ask me how I "cope"?  How do I get up and around with the pain and chronic illnesses, the fatigue, the swelling in my joints the stiffness, the pain that does not matter if you sit, stand, lay down... it is just there,... and by "faith" and "hope" and taking ALL of my medications as I am instructed, and trying to stay as active as possible... helps me to cope... my writing, my blog, being here on FB, my activism, advocacy, and my Ambassador roles... the AF, WEGO, Lupus Foundation, IFAA.... all of those and more, that give me the will to know I must FIGHT not just for myself, but for others out there just like myself or even worse.... Rhia Steele​



After reading this article I felt compelled to share it. This is one of the MANY complicated emotions when you are dealing with Chronic Daily Unrelenting Pain....

Wednesday, September 16, 2015

IFAA and the Walk for fundraising sponored by AARDA! To Help get a handle on Autoimmune Arthritic Illnesses!

I am not near any of the "walks". But, I wanted to show my support so I joined "virtually" the IFAA Team!

There are dozens of reasons why WE need as much support as possible when it comes to Autoimmune Arthritic Illnesses!

We need more research, more Rheumatologists, and Pediatric Rheumatologists also. We need better medications, hopefully someday with less side effects, and of course we desperately need to find a CURE! and/or STOP these horrid life altering, life stealing illnesses, diseases and syndromes well before they take over!

So, I invite you to walk, or walk virtually. Or give a donation, and you can "give" what you feel you can. Any amount is one more step for hope, help, research, medications, reasons why our immune systems go "haywire" and A cure.

I did not realize until this morning that the actress "Kelly Martin" whom I just happen to LOVE, is the National Autoimmune Walk Ambassador this year! Her sister who suffered symptoms for a long while and then was diagnosed with Lupus, that later took her at a young age gave Kelly a longing to try and stop these horrid illnesses.

I am an avid fan of Kelly's. In fact I record all of her movies on the "Hallmark Channels" and sometimes watch them more than once. I think she is a tremendous actress and an amazing woman.

Here is a link to the page where she has an open letter about her personal situation due to her sister's illness and why she supports AARDA and this walk:

Here is also a link to the IFAA walk Team Page!

IFAA Buttahflies

Here is my "personal page for the walk

Tuesday, September 15, 2015

When You are Unable to be somewhere, participate in events, whether family, friends and your activist, advocacy things... the challenge is to NOT feel guilty or as if you are letting others down....


A great article about just how we all too often feel - when we deal daily with Chronic Illnesses and/or Pain. The challenges of being able to be at events, be with family and friends... how we feel "guilty" for thinking we are letting others down... it is NOT our fault, yet, I know for myself, I feel guilty, frustrated and like everyone around me thinks I am just making this up and I am not all that sick... People in general see us outside the home, when we are "okay"... many do not witness those days, weeks, or even months that we are NOT okay....


Medtronic's Pain Pump Medtronic "2" has issues and needs to be "fixed" - Bothering me immensely this Pump has been a total Life Saver for Me!

 I've had the exact same pump in since 2010! In fact it will be 5 years next month, in October since I had it put in. I've never had any problems with the pump. I get it refilled about every 3 months, and it can always be adjusted, and has been a couple of times over the years. But, I can also "give myself an extra bolus" every 12 hours with the 1st "PTM" that came with this one. I was one of the 1st patients to get this particular one. I have a handheld device that after 12 hours, allows me to give myself an "extra" bolus of medication. I can hold the "Patient Treatment Manager" (I think that is what the PTM means) up to the top of the device and it sends a signal to it and if 12 hours have gone by, then it gives me a tiny extra dose, each time I do that, spread again over a 12 hour time frame!

I knew when the pump was put in, that after about 7 years or more, I will probably face having to have it replaced. The batteries can run out, but it can also be longer than 7 years also. Yet, when that time arrives I want to know I can get the same one implanted!

It has been one of the most positive changes in my life. I just don't know what I would do without it!

Discovery Could Lead to Earlier RA Treatment — Pain News Network

Discovery Could Lead to Earlier RA Treatment — Pain News Network 

Sharing more great news in regard to hopefyully finding a way to detect RA and Osteoarthritis much sooner by other lab work!

Monday, September 14, 2015

IFAA Post and an article about the "Cost of Chronic Pain"

Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....

Sunday, September 13, 2015

Distressed, Disgusted, Distraught, Disturbed... AND MANY Other "Realms" of Distaste I Feel With Our Nation, Our News, Our World & All Who Choose to Bury Their Heads in the Sand...

If YOU are trying to figure out exactly "why" the name of this post is "OFF" from my usual, that is because IT IS, "Off the Beaten Path"...

You can say that this involves "physical", illness, pain, destruction, devastation and moreover, I am totally DISGUSTED with many of us, and I must say I include myself in that "us"....

ow the "news" can sit around and bring about MORE "crap" about "email servers, emails that are eons old, Trump and his debauchery,, along with each and every other "Nominee" - whether "Red" or "Blue" is beyond and above what I comprehend!!!

When just here in our own nation, we have thousands upon thousands of acres of precious land, homes, trees, earth, that first has suffered immeasurable damage from drought, and then to be completed brought down to its knees with wildfires above and beyond any one's imagination act as if it is just another day. W have "EVIL" doers on one of our main Highways through Arizona, SHOOTING arbitrarily at any and every thing they in their warped minds they see.

What about all of the flooding, the horrible and completed demolishing of many of our states in the past months with water, MUCH, MUCH MORE water, drowning people, again demolishing everything in its path, leaving people once again homeless, without jobs, and the loss of everything that they ever worked for and cherish.

The EVIL out there that lurks in movie theaters, in Malls, on Highways, on our own city streets, that think no more about shooting people and killing them than they do breathing air... the morality, the greed, the power hungry, the people that have NO care for "human life"... and what makes that even worse, is OUR YOUNG PEOPLE... are many of these horrid, evil filled "humans". How can someone so very young get to be so very wicked in a few short years of life?

How can the "educated" ones that have knowledge at their fingertips, families that love them, take off to some "foreign" nation that literally HATES all Americans, and "join forces" with those who intend to not just harm us, but kill us, and then they strap on "bombs", blowing themselves up, in the name of "a higherpower"????

NEVER have I ever thought not one moment about me taking my own life in the name of the "Lord and Savior" that protects and saves me. Not only would I disobey one commandment, but I would disobey the very fiber He made me from!!!

It makes me literally SICK to watch the news be filled with all of the "junk" about a new President!!!!  Yes, the upcoming election is important to all of us in the USA!! BUT, at this moment it is NOT above the sick, the dying, the starving, those running for their lives from war, killers, that kill not just men, but women, children - it matters NOT who it is, they kill them... People are literally running from fires that are engulfing their homes, and from flood waters that are washing away their lives...

I "rarely" discuss politics... I feel ALL are entitled to their own views... BUT, I sure as heck right now am not concerned what so ever about a Hillary Clinton "private server" and emails that probably don't have a darned thing to do with her being a Nation Changing President!!!! But, I can tell you, if we allow that LOUD MOUTHED "satan tongued" Trump to be over us as a "Leader" of the FREE WORLD... well he will have us blown up within the first year by someone he has opened his foul mouth to in some other nation, and makes them hate us even more than they already do....

And whether you are a "Republican", "Democrat", OLD, YOUNG, MIDDLE AGED, MALE, FEMALE... or of any race... NONE of that matters either!!!! I want the President to be someone who can take the reigns and reign in CONGRESS... and STOP CONGRESS from being a bunch of Kindergarten's and bickering, mud slinging, name calling, and just being plain bull headed and only want what is best" for them... WE "elect" people that are supposed to take care of our nation.... what email they sent 4 years ago, to a friend in Florida, who cares?????

But, you can bet, whether a Congress Person, a banker, lawyer, doctor, or Indian Chief, MOST are OUT for the OWN GAIN!!! GREED, CORRUPTION, LIABLE, SLANDER... all bull... which has gotten us no where over the last 16 or MORE years, but deeper in debt, while the "few" with that "power" get richer and the middle class struggle to keep a job, put food on the table and a home over their families heads....

So, rather than going on and on and on.... about who said what to whom on their "Blueberry - Blackberry - Raspberry" or these "Smart phones" that are surely "dumb" to me, I don't care.... ALL of us fall short of perfection... ALL... and SOME of us have never even thought to strive for being "perfect" - Yet, we try to be the moral, upstanding, truthful, loyal, and honest as we can be....

So, to HECK with 16 or whatever "Republican Nominees" - ridiculous - and thank goodness PERRY quit!!!! Good news for the nation.. and now TX is rid of him also...

And whomever can stand up, and tell ME, how they intend to try and turn this country around... our stock market reeling - one day up and the other the "worst" down in history... people's life savings not making a dime, and Social Security and Medicare... OH HELL that is another BOOK, not just a post... someday, after I finish including my thoughts on those, my book may be much THICKER than anyone thought I could ever write.....

So, when you bow your heads this evening at a meal, or with your kids as they go to sleep - or if you do as the Lord tells us, "hide in your closet" and pray... then you have a direct line to WHOM can turn this country around.....

Thoughts as I ponder my own Health, Lupus, RA, Sjogren's, those that "harm" us, those that have all disregard for human life.. the nation and world in vast and deep trouble...

I put up a couple of new pics earlier on Facebook and I wanted to post them here, and then write about some stuff I've been wanting to write about... lots to do with my own life journey, this river of all too often the "unknown"... we  ... none of us know what the next moment holds... we are not meant to... thus each breath leads to another "surprise" of life... this below is about dealing with illnesses, chronic in nature... Lupus, RA, Heart problems, Sjogrens' the severe pain of them, they tend to try and consume your life, mind, heart and soul... and how then a relationship, although we never know either can literally "suck" the life out of you... before you even know what has happened.... So, I wish each of you, a good life, be safe, love one another every day, every moment... do NOT let a moment pass by that you don't try and make someone else, yourself, or even your "four legged" friends... (I speak of my pups) that you don't love them, and tell them often... 
We never know if we will be shot going down an Interstate, or bombed and terrorized in a church, place to eat, on a job.,, in a market... WE have MANY, MANY Horrible people that spend their life "killing others" and never bat an eye doing it... it is all around, and we hear, read and see is way too much... our NATION and OUR WORLD are in much need of PRAYER, PEACE, AND HARMONY!!! ... YET, too many do not have any regard for human life... I just don't and cannot fathom that they do that in the name of their "god" or whomever they worship.... 
After the SEVERAL what feels like MONTHS the past weeks... I needed to hear something "positive"   I have been so totally frustrated with "life" in general... mainly of course illnesses and medical issues. I am still not "completely convinced about this leg being "not infected... but the surgeon I went to has been practicing for many, many years... so I must have faith that he knows what he is looking at. I learned a few things from him by asking questions, especially about MRSA, and what to look for and so on. I am not sure why that even though this lump was "abscessed" is it not "grow" anything. You would assume it being "infected, which is what I "assume" abscess is, that there would be some type of staph, strep, or something that would grow out of that culture. He took two... because I actually had two pockets of abscess from what he said, one not very deep, but the other quite deep into the thigh. I am still taking extremely good care of it, and not going anywhere without it covered and I am still actually covering it with gauze. For one, with the two pups, and then jumping to see me, especially when I sit down in the evenings on the sofa to watch a = movie with the, they both are pawing at me, or putting their heads on my legs etc.. vying for my attention,.... talk about UNCONDITIONAL LOVE!!! That is what I get from Bub's and Tazzy.... they love me in spite of being ill so much, being not able to sit with them every moment of the day LOL, if I have my makeup on or not, no matter how I am dressed... they love me... too bad I never found a "spouse" that was so committed to me... Yes, I did say that...I am so "fed up" at the moment with people that "commit" themselves supposedly 110% and vow to be there no matter what, yet when the tough times roll around, guess what... GONE... on 60 SECONDS! I was totally "committed" to each and every relationship where I said and vowed to do that. But, as we know it takes TWO!!! I could not do "all the work" and the other party not want to work at it at all... and in fact at the moment I am quite livid in the fact, that I've been deceived, lied to, cheated on, and you name it, and I know that even my neighbors who have known me now 8 years must have been "told" I was the problem!!! They barely even "look" at me... and they were here all the time "before" the other party left for Seattle... so I can't help but think someone said things that make them think I "threw" it all away etc... when I never did such... but after trying to work on it for almost 13 YEARS... between my own health, my Mom, and ALL that I need to do... things that I gave up, in order to make a relationship last, I am SICK of GIVING, and someone else doing all of the TAKING!!!! Plus I am TOO OLD and TOO much water has flown under the bridge, that I shall NEVER "beg" anyone to be with me, or stay, and so forth... I am too disgusted with all of it, to even truly have the stamina to "fight" for someone to be here. I am just as well off, even though I am lonely at times, the pups as I said love me, no matter what... and I've vowed to NEVER again get into any "long term" anything... And no one say "Oh, you will feel differently later..." NO! I won't... I am going to spend the time that I "wasted" on committing to someone who just took full advantage of my tenacity... and put all of that COMMTMENT back into getting myself as well as possible, writing my (or may I say finishing") my 3rd book and getting it published, along with more much more energy into my blog... which is doing fairly well... and into my activist and advocacy work... those things are where my true nature, my passion, my love, and what I feel my life is truly about... and no more will I forego those things to try and make someone else happy.. if they cannot be happy themselves, then I certainly can't make them happy .... I am off to post this on my blog... do a few things I've got to catch up on... I spent yesterday outside a great deal... washed and got most of my car waxed... and got some of the dead limbs and trees down that my neighbor "left" rather than take down as he said he would before he built that UGLY HUGE MONSTROUS WHAT IS SUPPOSED TO BE A GARAGE... it is bigger than my house! So, I've got lots of things I have to do for my home and I am already too vested in it to not finish what I began... so as the next moment, hour, day, week, and hopefully YEARS flow... my hopes are to "do" exactly what I feel my true "calling and purpose" here is.....

Friday, September 11, 2015

Reflection - Where were YOU on that fateful day or Horror??? 9/11 changed all of our lives and this world forevermore...

Gosh and 2001 had already proven to be one of the most hardest years of my life. On the 8th day of January 2001, I had a heart attack. That was about 10 AFTER the man I was married to for almost 18 YEARS walked in on Christmas Day 2000 ( he had been gone like usual and I had no clue where)... So, the kids, and some of their friends, were at the house for Christmas Day. When he showed up, he "threw' a present at me, said he was leaving, and probably would not be back, got some clothes and left. Everyone was gone that morning that I drove myself 20 miles to the closest ER. I had been not feeling well, and having some chest pain for the 3 days prior. I thought I may have bronchitis, so I called my doctor at the time. He told me to get to the nearest ER immediately. Well, I was "chatting" with a dear friend who lives in Malta, and she told me if I did not either call the ambulance or get myself to the ER, she was going to call from Malta, here to TX, where I was and have the ambulance come and get me herself. So, I promised her I would go, and thus got up and went there. As I drove, I put on my flashers, but did not want to drive too fast. I had no clue what my might while I was driving. But, I made it to the ER, walked in and told them about the chest pains, and they immediately and swiftly got me in a room, began an IV, gave me an aspirin, and started doing an EKG, blood tests etc... they also came in and gave me medication into the IV, that cost 2,500.00 for one dose... a bit later a doctor walked in and he told me that I had an MI, and that the initial blood work showed I could have massive damage to the heart muscle. I still had not called anyone to tell them. But, they knew me there at the hospital because I had worked as a Patient Rep there for 6 years, and one of the nurses told another friend of mine who was still there in the business office. She in turn called my parents, etc. They wanted to transfer me to Baylor in Dallas. But, they had to stabilize me first before they could. So, I was put in the ICU unit... I found out that $2,500.00 injection probably saved my life... it was one of the newer "clot busters" & it basically stopped the heart attack and prevented further damage to my heart. But, it was still unclear until they got me to Baylor via ambulance the next day. I HATE ambulances and hope I never have to ride in one again. I had already done that twice, and then after that I actually have been once again in an ambulance I think now 3 three or so... Anyway, as soon as I was put in a room in the cardiac unit there at Baylor, they began tests to see what was going on, how much damage, if I needed stents and so forth. So, they did an angiogram, which they put an incision right almost at the bend of my thigh and pelvis, ran wires up to my heart, where they could see what was going on.... well, I was of course awake, maybe a bit sedated but not much, and the doctor said something like OMG or something. I thought he had found something horrible, but he saw one of my main arteries going into my heart spasm... thus they felt that may be a part of the factor to the heart attack I had at 40!!! From there they discovered that the damage was minimal due to that injection, which was why at first the enzymes in my blood were so high... it stopped the damage thus allowed those enzymes to be rather extreme... I went home 7 days later, with ONE thing that shall always stick in my mind. I saw my cardiologist about 2 weeks later. He told me either I CHANGE everything in my life and do whatever it takes to get away out of the grips of whom was making me sick and hurting me... mentally, physically and emotionally, OR he would kill me one way or the other... so I went home, got myself together, packed what little I could after my 6 week follow up and headed for Lancaster CA. I had made a couple of friends there via the internet... and Aimee told me I could come stay with her and her Father, get a job, and I could stay there even after she moved into her apartment and have her room at her Dad's home. So, I did. I got busy trying to find a job... in fact for a couple of weeks, my "job" was to find a job. And I did. I was supposed to start one, and it got delayed because that company did not have their equipment, computers and so forth ready yet. So, I interviewed for another, and was to go to work that next week. In the meantime the place that helped me find the job, had a "temporary" job in a warehouse close to where I had been staying. I could work that for a couple of shifts until I went to work that Saturday at my permanent job. Well, in the process of cleaning up shelves and so forth in this HUGE warehouse, I knelt down on my "bad left knee" and I felt it immediately. I had torn more stuff and damaged it. I had to leave the pain was so bad, and by the next morning it was swollen so much I could barely bend it... But, I worked that Saturday at the new job, loved it, and my thoughts were to stay work long enough to get on insurance, and have the knee seen about. But as that day wore on, my knee got worse. That Sunday, I made the difficult decision and had no choice but to get in the car with my stuff and come back to Texas. I was still covered by the insurance that paid for the heart attack. I got back here and within a week had seen an Orthopedic Surgeon, had an MRI, and was having knee surgery. From there I got "better" and went down to Austin to find a job. A dear friend of Aimee's lived in Austin, so I was staying with her and her boyfriend... I had found a job, and while I was there, I exercised, walked, and did house work and so forth for her, and got in much better shape physically. So, my plan was to actually move much closer to my parents and to the kids, so I decided Austin was just not where I needed to be... so on September 11th, 2001 I was in Ft. Worth TX, heard something on the radio, and turned the TV on to watch the 2nd plane hit the 2nd World Trade Center Tower... after that everything was just nuts.... I watched for hours and hours that horror unfold... I could not take my eyes off the TV... and I called my Mom and Dad, because at the moment none of us knew exactly what could happen... so I tried to get hold of everyone to tell them I was safe, and check on them. I made a brief stop back in Ennis, and then is when my life entirely changed for the better. In the back of my mind, was that voice of my Cardiologist, get out and away from "him" - speaking of my now ex-husband or he is going to hurt you in one way or the other... thus on October 31st, Halloween Night, 2001 i got off the bus in Seattle WA, which totally gave me a new life, new job, new friends, and I was "free" of the abuse and horror that I had been through for years in TX. I filed for a divorce before I left TX, then flew back later to "seal" it in front of the judge. For 5 years there in Seattle, I cannot begin to tell you how much I changed, I grew stronger, I had more faith in myself, I made my own decisions, I loved my job as an Apartment Manager, and even bought my 1st car, that was my own. From there the story goes on, moving back to TX 5 years later due to needing to be here for my Mom and kids... but to this day, I shiver at what I saw on that TV, and witnessed the bravery of many who risked their lives to save others.... I am sure for many of us, there is a deep scar in our hearts, that still remains after that day of horror... and now we live in a MUCH different world for sure.... we have to be diligent everywhere, from church, to a Mall, to our schools, to even a Movie Theater.... to just being out on the street or highways driving. Since 9/11... our lives are lived around almost an "untold" and "unspoken" deep seeded fear, that anywhere we go or are, we could be a target for someone who hates mankind... the terrorists are not just in New York, not just overseas, but they are our next door neighbors, a family member, or that stranger in a car that may drive by.... that is right our children will never know and their children... that "freedom" is not what it used to be... It is sad and now once again this nation and just about every nation in the world have "turmoil", war, death, starvation, droughts, terrorists, people that "prey" on their own kind... the reflection in the "mirror" of life is no more and never will be again.... Thanks Jason Harber what you said and what Amanda Batson- Matheny said along with many of us will reflect on today... and just how much we have changed as "humans" of how we feel we must "not trust" as much, we can find ourselves living in a "fear" and may not even realize it... The Memory of the Loss of so many innocent lives will always remain, and what those terrorists took was something from ALL of us... and left us with fear.... my thoughts, prayers, and in Remembrance of ALL who "lost" - I pray that no more will we have to endure such horror....

Thursday, September 10, 2015

Day 10: Pain Awareness Month - US Pain Foundation and a great video to find out much more about Pain Awareness Month, the US Pain Foundation and How you can help!

Exciting News for IFAA - -FINALIST FOR INNOVATION AWARD! "Celgene" Innovation Awards


The International Foundation for Autoimmune Arthritis is a FINALIST in the 2015 Celgene Innovation Impact Awards: “Unleashing the Patient Voice in Research”, with awards up to $100,000 for our submitted project idea!

IFAA is dedicated to bridging YOU with scientists so that OUR needs can be heard and then turned into real research projects. We are problem solvers, it’s what we do. Hopefully we are able to push this to the end and bring home one of the awards! Autoimmune Arthritis patients- it’s our time to be heard!

Congratulations to all the finalists:
1. Aplastic Anemia & MDS International Foundation
2. Cancer Support Community
3. Crohn’s & Colitis Foundation of America
4. FORCE – Facing Our Risk of Cancer Empowered
5. Foundation for Sarcoidosis Research
6. International Foundation for Autoimmune Arthritis
7. MDS Foundation
8. National Psoriasis Foundation
9. Research Advocacy Network
10. Pancreatic Cancer Action Network

Wednesday, September 9, 2015

IFAA, Tiffany and the Entire Dedicated Group with the International Autoimmune Arthritis Foundation - Thank you!

I had a very pleasant surprise at my door step Tuesday after the holiday weekend! My “regular” mail had already came. But, later in the afternoon, I stepped out on my front porch to see a large package with my name on it!! At first, I thought it was the “blue ribbons” that I am waiting on for pain awareness month. They have not sent them yet… BUT, IT was ALL KINDS OF AWESOME STUFF FROM THE IFAA AND TIFFANY! I was so thrilled when I opened it… an awesome very sturdy reusable bag, along with others that are also perfect to take to the market from the WAAD 14! I also had a nice pen with the IFFF Logo on it, and a huge book that came from the Autoimmune Summit 2015 - with all of the data from research and so forth they discussed at the Summit in New York! smile emoticon I am really enjoying lots of the data in there… extremely interesting to me… anyway, I will get a better photo up later. I had to take this one with my “web cam”. I am charging the battery on my good digital camera. So, I will make more when it is charged. Again, Thanks to IFAA, Tiffany and the entire gang… what an awesome job all of you do…. I hope to soon participate more. Due to all of the “circumstances” between my own health, My Mom’s health, then all of the other personal “agenda” that I HOPE to have basically over with in October… my hope is to get back on tract with my activism, advocacy, my own research, and doing more writing on my book, as well as working even more on my blog… by the way my blog seems to be “getting more attention”… and I am thrilled about that…

 To Learn more about IFAA, want to join in their Advocacy team and more  the URL IS:

Tuesday, September 8, 2015

The "NEVER ENDING" Saga of Rhia, Autoimmune illnesses, cellulitis, abscesses, and feeling the pain, disgust, frustration for others like myself that seem to NEVER get a break

This is a post I sent to a friend on Facebook... she also is just having one hell u va time, dealing with "crap", illnesses, and all that entails when you feel life NEVER gives you a break! I realize some of it I've already posted, but believe me... I feel it is totally worth repetition... so others KNOW they are NOT alone!

  I SO, SO, SO can empathize with you and how you feel. It has been so much the same for myself. Between the already issues with Lupus, RA, and so forth, then the accident last year in March that my husband was in, now he has left and moved back to WA state.. we are filing for a divorce and honestly I am NOT sure to this moment WHY? Then I need lower back surgery, then my Mom in the midst of me finding out what was wrong with my hips and legs, which was my back, she comes down with a severe hip issue, that also turns out to be her lumbar spine also. She is 80 years old, and they do NOT even want to discuss surgery on her...but they are trying with medication, PT and supposed to do some epidural injections on her. About the time we got those scheduled her last living sibling, a younger sister, passed away of a rare stomach cancer, she had been fighting for a couple of years, then BOTH of us come down with some kind of stomach virus, & I spent several weeks of it seeming to come and go, and even got ill Sunday morning...I was so upset, I felt "fine" was dressed, and was about to walk out the door, and my stomach felt "odd" and sure enough, I almost did not make it to that bathroom and was sick to my stomach again, out of the blue... then I have been dealing with a "lump" on my mid left thigh now for about 9 weeks... my PCP thought it was cellulitis, and of course with my immune system being so compromised, he immediately put me on TWO antibiotics, which helped some, but after 3 ROUNDS of them, 7 days each, he wanted me to have a surgeon look at it, and cut it out...well, I had a hard time finding a surgeon close enough that took my insurance, finally did, but he could not see me for over a week! So, all of a sudden this "lump" that showed no signs of an outside infection... has not been red, warm, or appearing to be infected on the outside, but a week before I was to see the surgeon I woke up to it being very red, warm, and appeared to almost be trying to burst open... so I quickly called mt PCP and told him... so he put me on another round of the antibiotics until I could see the surgeon. Well by the time I saw the surgeon which was last Friday, it has abscessed inside, and he had to "CUT" it open, and let all of the infection out of it! He also sent some to be cultured, and I must have had "two layers" of infection. One kind of shallow, but another much deeper. Now he did this in his office, just injecting lidocaine in it, which hurt like hell and burned worse...and I am "tough"... nothing usually bothers me... but then I had to take the bandages off twice daily, after getting home, and "clean it out" with Q-tips and peroxide... when I took the bandage off the first time on Saturday, OMG I have a HOLE in my thigh deep to it almost feels like it is to my bone, and wide... like 2 inches deep and that wide... I almost could not do it, but I knew I had to.. so I did that and then finally yesterday, it was not quite as painful so I took a shower and used antibacterial dial liquid body wash which I had already been using, and he said to allow the soap and water to get into it, and clean it out... I did, and it hurt some but not all that bad... but then this morning, I began to take off the bandage and it again looked awful to me... it is still draining a bit... but I see him tomorrow thank goodness... now he did not address the "other lump" on my right thigh, almost in the same spot as this first one. It came up after my PCP began me on antibiotics, but I never said anything about it, thinking that medication would take care of it also... well it is still there, a bit larger, and I fear it may be the same thing. I had told the surgeon's nurse Friday, but I guess he forgot about that once he was working on this other one. So, I've got to point it out to him... it is just like the other one... it shows no "outside" appearance of an infection, it is just a lump under the skin.... to top that off my Rheumy wanted to put me on a new RA Medication, but before we could change I had to do a whole entourage of blood work, TB testing, Hepatitis, etc... well all was "okay
accept the TB test... that particular test has to be done just a few hours after the blood is drawn or it can come back not accurate... so mine came be "indecisive"... so I needed a damned chest Xray to show the test was just off... well I could not again find anyone close that took this stupid insurance, so I finally was just going to pay our Urgent care to have it done. Well, the order got misplaced that my Rheumy sent them..then due to this lump, my Mom, my Aunt passing away, I got delayed in doing the X-ray... so when I went out to have it done last week, they had NO order, or they just could not find it, and when I called and had my Rheumy fax it, it was for 2 views instead of one... so I did not want to have to pay double if it was not necessary, so I had to get hold of my Rheumy... and have them fax a new order for one view... I FINALLY got that done, and now due to the lump, the infection, the delay of the Xray... I've not had any RA meds in like 9 weeks or more!!! So, my RA, is so bad.. And within all of that is even more crap that has and is happening... and I am just frustrated, upset, disgusted, mad, and all the things you feel... it is like some of us NEVER get a break... EVERYTHING in my life has always been "complicated".... and it is just too old... for sure....there are days I want to crawl under my bed to never return.... and between all of that... my Pug has also had stomach problems and been sick to her stomach off and on also....