How MUCH MORE Can one person stand?! Chronic Illness, Dealing with Life's other issues, & not just losing your mind or collapsing in it all....

Honestly gals and guys... I am concerned that I am either getting "worse" when it comes to the RA,Lupus, and so forth... or I have something else really going on with me... I've just had all kinds of "new" symptoms... first of all, I am having moratl heck with my fingers, worse than ever before. My right hand has a couple of very swollen places between my middle finder and my "pointer" finger next to my thumb. Plus my thumbs are really bad again. Plus, I woke up in such severe pain in my lower back and down my legs this morning, I really thought I had a kidney stone again. It was almost like a "cramp" or what we used to refer to as a "stitch" in your side. But, rather than it kind of working itself out, it went on for a couple of hours, and even now it is not the best .... plus I have this worsening of the "weakness" type o feeling in my legs, almost like they are jello and feel as if they could just "collapse" when I am up walking. I've also had BOTH of my ankles again not so great, but my right one as always, is so swollen and hurts like I sprained it or something... and I still have that "odd" kind of pulling pain underneath my right arm and into my arm pit then kind of a bit around to my back.... my stomach is just a mess... as if I was having or trying to have "spastic" colon issues, but it has been 20 plus years since I had one of those attacks. I used to have them when I was younger and of course they always called it a "nervous stomach" back then. But, it is of course down into my lower intestines, like they are trying to cramp up... and then there is this almost too weird to try and explain, "severe" fog... brain fog, memory fog... and now it is just so bad... I walk around almost as if I am in a daze... and my memory is horrible the past couple of days... but I feel almost "detached" from myself... and I've had that happen a couple of times in the past 10 years or so... where you almost feel like even though "you are here"... you almost feel as if you are looking "down" upon what is going on... and really not "in" the situation,., I know there are terms for it... kind of one of those "fight or flight" responses, that our "mind" uses when we are way overly stressed... and when that "breaking point" begins to be felt... then we seem to "detach" from it all, and become a "quiet observer" because it is just ALL TOO MUCH to deal with... thus it is a mechanism to keep us from going completely bonkers... and my "LISTS of LISTS"   keep getting longer and longer, yet I am further behind more every day.... It seems EVERYTHING right NOW is "priority",.. yet none of us can do 100 things all at once, and really "survive" going nuts....plus the night terrors have been so bad, this place of feeling so totally like a "failure", feeling like I don't "fit in", that people "dislike" me, and they look down on me, because I am not "enough"... Just about every night terror I have has this same theme... either I am "not good enough" for family, or some job, or some group of people I am around, or my "spouse".... hahahaha ..... now you see where I am coming from... I feel that now my life is HALF over or MORE THAN half over and I'VE NOT ACCOMPLISHED  a damned thing I have wanted to... the list of things that my home needs is endless... now many of those that I would LOVE to be able to do... I know are not feasible for me to even give thought to....yet when I get so "bent" as I love Matchbox 20's song, "Bent"  - I feel exactly that way "bent"... I have always thought no matter whether my family, a friend, someone I worked with, associated with... or anyone for that matter, that I am just "not enough", "not worthy",,, I've NOT done, this, that or the other... and that I SHOULD be accomplishing so much more... and the more I try to do, the more BEHIND I feel as if I am..... BUT TWO GREAT THINGS!!!!!! NUMBER1 - I GOT MOM'S INTO PT! And it is here in Ennis AND THEY TAKE THE INSURANCE!!! whew!!!! NUMBER 2 - She is scheduled to go see the pain doctor next Thursday so they can schedule the injections... SO HOOOORRRRAAAAAYYYY!!!!! THAT were two of the things I was most concerned about... so those are good to go.... NOW I MUST being to decide WHAT TO DO ABOUT MY LUMBAR/SACRAL spine fusion!!! I "THOUGHT" I MAYBE able to put if off for a while... but, as badly as the pain has been even worse than before the test was done... I don't think putting it off is an option, well not for long... I think just as my pain doctor said, get it fixed NOW... for it will only get so much worse, and I do not want to wait until I am even worse... then my recovery time OR even (and this may happen anyway) I think when he does surgery, it will be a HUGE worse MESS than any test showed... it never fails for me... it always is like that.... anyway.... I am still knee deep in stuff to do... but it am just totally wiped.... more to come...

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

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


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

WEGO - and How they have made OUR Voices Heard!

This is definitely worth watching!!! Way to go ALL and thank you WEGO HEALTH!

https://www.youtube.com/watch?v=zyaGZdsJaBI&feature=youtu.be

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

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

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

EnergyCommerceCures ‏@ECcures Jul 10

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

Doctors Visits, Sleeping Late of course, thoughts on Autoimmune Illnesses, and why some of us tend to get them and others don't....

Well of course... I am supposed to go to my PCp and Mom has an appt also... this morning, hers at 10:15 and mine at 10:30  I had the alarm set even though I am always up early and of course.... I SLEPT LATER than I wanted to and teh damned alarm did not go off.... LOL... tells me what kind of day it is going to be, thank goodness the appt is local and not but about 10 minutes from here... but I wanted to get some things done before showering and getting dressed... guess those will have to wait until later today or over the weekend... I am feeling either like allergies are acting up OR I am coming down with a "summer cold" or something. I've woke up and even last night going to bed with my head kind of plugged up, or feeling like I couldn't breathe as well through my nose, and I had to get up in the night 2 nights snow and use my nasal spray... and of course then over sleep.... I am in the process of getting our Mayor to sign a "Pain Proclamation" for September Pain Awareness Month and they are have "Beautify in Blue" Theme. If I get the city to approve it, I can put up posters around and tie blue ribbons and so forth in September around as long as it is okay with our Mayor and City Counsel. I really want to do this.... I've posted things about Arthritis and the Arthritis Foundation and I've had some Lupus things I've posted off and on... I even have 3 Proclamations from the Mayor 1 and 2 from the Governor of TX signed for Lupus for 3 prior years. So, it would be nice to get my city involved in the Pain Awareness Month. I know we have MANY chronic pain sufferers, lots of people I am sure with autoimmune illnesses, such as a cousin who has RA, and I hear all the time around town about people either with the illnesses, OR they have family with especially Lupus... in fact I've wondered about the Lupus several times. It seems Ennis has more of a tendency to have "Lupus" patients more than RA, or some of the other autoimmune illnesses. I know a couple of girls  went to school with had MS some years back. So, it would be really interesting to find out more from either a "poll" or study of some sort about "why" we have more of one than the others etc... I have my own thoughts that all of these AI illnesses (and I include FM,CFS and ME) in the list... that are partially "heredity" and then also partially caused by something we either eat, breathe, have in our air, water, food etc... that suddenly "awakens" those illnesses in some, and not in others. Of course I am very much the "laymen" when it comes to this, but over the years of my own plight with the illnesses, all of the blood work, when my symptoms seem to be at their worst, why some meds work and some don't etc... all have led me to believe... kind of like cancer... our immune system could be "wired" from birth to have more of a tendency to suddenly have something in life happen to cause them to act up. From stress, which I know for a fact makes me much worse in flares", to having something very dramatic happen to you in life, a very bad illness, an accident, something that puts so much stress on your mentally and then of course effects you in a physical manner also... and then that happens to cause whatever may have been staying "in check" for many years of your life, suddenly just runs "amuck" in your body. What gets me is that for years I was told due to all of the joint problems, that I had DJD and DDD, degenerative joint and disc disease, and at that time usually that meant of course "arthritis". I can recall questioning my doctors even in my 30's as to why I would have this problem so early in life, and their response was usually "genetic" in nature... my Dad had arthritis for many years I recall. He always wore a "copper wire" around both ankles and complained with his knees more years than I can count, even when I was very young. But, also never was it questioned "why" in his I am sure late 40's had that bad of joint problems, especially his knees. His job and when he was young hoeing, pulling and chopping cotton, to move onto working at that time what was known as Ennis Tag... at 16 years old... and then it went onto become Ennis Business Forms... and that was on a concrete floor, years on a printing press, and then he was in management the last 20 years or more, before retiring. So, the doctors blamed his on "environmental" problems. But, back then, I don't think RA, was even anything the doctors knew enough about or anything about to make a diagnosis. So, even though Dad had "symptoms" back very early, his were considered a part of his lifestyle... he also fought in the Korean War, and contracted a very seriously bad case of Malaria. He was in the hospital 3 months, from what I know. Even the whites of his eyes turned yellow from the Malaria Fever. He never could give blood after that. I think that it remains "dormant" even though you recover from it. So, I wondered if him being so ill with such a bad disease back then, may have had something to do with his later joint problems and arthritis.

I've came to the conclusion that the majority of us, have our own "thoughts" about the why's of these illnesses. Many of us are more "experts" about some of them than our own "experts"...

Even though this sound harsh.... Yes, our doctors are the "specialists"... they go through many years of schooling, hard work, studying, and all to become doctors... and then more years to really specialize.

Yet, when you have never "experienced" a "chronic illness" ... whether pain, autoimmune illnesses, arthritic illnesses, FM, CFS and many more... you just cannot "know" all of the in's and out's of those diseases. When you LIVE, EAT, BREATHE, WAKE, SLEEP them every day of the course of your life, you tend to become an "expert"... by having the problems, be researching very specifically certain symptoms, by reading, by the latest news and developments, by websites that provide tons of good information and so forth... so of course doctors are the "experts as far as "knowledge" in schooling, BUT, they cannot possibly "get" what we feel, see, hear, smell, and LIVE with daily.... thus I cannot fathom in these times physicians are still "NOT HEARING" us truly... they may "half listen" but some of them like my own Orthopedic doctor, will flat "dismiss" me and say I am "not the expert"  again. one of the doctors that DOES NOT like an "educated or informed patient"... so this is my take on things for the time being... when I return from the doctors later today, I will add more onto this.... but please post your thoughts....

The Petechia is back and rashes ... still don't have a clue... Rashes, Brusing, Petechia, lowe back issues, hips issues, does it EVER END with AI Illnesses??????

 The first two photos are from a couple of years back. I developed "bruisinng and petechia" on my legs and arms.... portions appearing as huge bruises, others appearing to be like "blood blisters", such as you may get if you "smash" your finger etc... it forms a "blood type blister".... I went through every test in the world and specialist and no one really ever came up with anything other than "Lupus" causing it. They only appeared on my arms and legs... no where else on my body at all..,

I have that same strange "blood blistering" like stuff suddenly on my arm last night...  here are some new pics, along with the ones from a few years back... This one ABOV as I said is NEW... this just appeared a couple of nights ago as almost the same type of "petechia" blood blistering as before... no apparent reason I can come up with... and below is the "rash" the developed on the inside of my right knee about 2 weeks ago. It was like tiny blisters, but they were "lined" up in rows... I also had a few on my right ankle, and my 1st thought was shingles. I had happened to of course been on and stay on pain meds, and have those in my pain pump internally also, plus I was on the generic form of Valtrex. Since I began with the Lupus, RA stuff... I developed blisters around on the corners of my mouth. My doctor thinks it is a "herpes" type virus because my immune system is a mess with the AI illnesses, thus he treats me with the Valtrex for them... but as soon as the "2 day" dose is through, I develop them again. I am going to ask him about a "daily dose" to see if that is possible and it it might keep these mouth corners from being bright pink and sometimes blistered... they hurt and try to crack open at times, and I've put just about any and everything imaginable on them trying to see if I can stop it from happening....

Costochondritis - another "possible new problem"? With Me and the Lupus, RA, Sjogren's, Osteoporosis, one may never know....

I "think" I may have "Costochondritis".... I started having pain under my RIGHT arm a couple of days ago, and kind of around to the front of my right chest... it hurts to take a huge breath in, or if I hold my arm a certain way etc... it can bring on the pain. I noticed a moment ago, I had the hiccups... and OMG! WHEW!! Did that ever make it worse..... I figured I must have "pulled" a muscle underneath my right armpit and then around and it even hurts some into my back, but not like right at the arm, where your armpit meets your chest, and then a bit around to the front. an NO, I do not think this is a "heart related" issue at all. I already thought about that, but since I've had 2 of those, I am pretty well, educated on certain things to look for if heart related... that is why I am trying to stress this is under my right arm, kind of around to my right chest, and then into my back some also. I went to pick up Tazzy - my Pug, a couple of days ago. I have to help her onto the sofa,She no longer can jump, so she puts her feet up on the sofa and then I gently pick her up so she can get on the sofa. The other morning, I kind of had an "off" moment, where I lost my balance in helping her up. I really didn't think much of it until I began to get out of the shower a bit later and OMG I was like WHAT THE HECK????? Then of course I have been so busy doing about 15 of more things around the house etc... so I am already sore and achy due to all I am trying to accomplish also. But, ALL of it woke me up at 5AM! MY hips, lower back, my shoulders, under my right arm, and I was so achy and so stiff I didn't think I could even get up and do anything. I really didn't do a whole lot today, other than a few very "easy" things.... anyway, I had not even tried to look up what the "symptoms" might mean, so a bit ago, I though in between a movie and getting some sherbet I would look it up.  I think it appears almost like I do have "some swelling" on back on that side... it appeared to kind of look "puffy" comparing it to my left side under my arm.  The Costochondritis and was about the 1st thing that popped up and that seems to kind of describe what I am feeling. I gather since I am on pain meds, corticosteroids etc... that unless something else plays out or I get worse, or have different symptoms it will dissepate on its own over a few days. If not, I have an Ortho doctor appt on Wed to discuss my "test results" from the discogram, plus Mom is going to the same doctor about her hip severe pain, and cano't barely stand any pressure on it Then we also see our PCP at the same time o Friday, next week... so I will have a chance to ask about it, if it is still here by then.... Happy Fourth to ALL!!!!!!! May our Nation and World over find peace and harmony, and NO threats of any kind.... that is truly my 4th of July holiday wishes... I am probably spending mine either doing some stuff around the house, or resting, depending on how I feel tomorrow morning.... Hugs, Rhia Steele​

Necrotizing Myopathy: Are Statins to Blame? Article from Med Page Today! Something you may need to know more about... "Muscle Pain"? Not sure why? On a "statin"?? This maybe the answer...

 

This is very similar to what I went through a couple of years ago. I was on a statin, NOT for cholesterol issues. But, a statin, a small dose of blood pressure medication, and Lasix has became a "norm" for many who suffer a heart attack. IT seem the combination help to lessen chances of another MI. But, when I went in with severe muscle pain, especially in my calves... plus fatigue, weakness, and so forth, my PCP checked to see what my levels were to make sure I was not suffering not just from Myopathy, but worse, it can turn into Rhabdomyolysis. plus due to the fact that I also suddenly had double vision which grew worse as the days went by, my blood tests confirmed I had "muscle damage" in my blood. Much like the "enzymes" they look for immediately when the suspect an MI, also basically the same he found those enzymes and I should have not had any. Of course my situation was even more complex. I already had 2 "heart attacks" not just one. So, it was even more important to try and do any and everything to NOT risk another. Yet, the myopathy can be dangerous.... and it can cause permanent damage if left unchecked... so I had to go off the station for 3 months, or until my blood work showed NO muscle damage. So, just like "Prednisone" as my PCP calls it for me a "necessary evil"... without it, I honestly think I maybe unable do do much of anything. It helps to keep the severe inflammation down, but also again in turn, now I have severe osteoporosis due to the Prednisone and I am also "pre-destined" to have it due to genetic reasons and even the AI illnesses. Seeing this article once again brings to mind HOW MANY COMPLICATIONS, other illnesses in "tandem"... the meds and their side effects... all come with Autoimmune Illnesses, and arthritic illnesses, and many other chronic diseases, such as FM,CFS/ME and MANY others.... as PATIENTS so MATTER "what" a doctor might "tell me" I AM STILL going to be an EDUCATED patient~~~ I thoroughly believe some of my treatments, and even maybe some of my diagnosis, would NOT be right.... had I NOT became an EMPOWERED and EDUCATED Patient! I also know there is LOTS and LOTS of "bogus" material out there in the WWW... so you truly have to be diligent when it comes to what you think is accurate... but I NEVER hesitate... IF I Read, or see something online I feel "maybe" something my doctor had missed or not thought about and so forth... I PRINT IT, TAKE IT and Ask him to either allow me to ask questions, or let him read it.... or us just discuss the "main" issue whatever I bring in maybe relative to my situation.... of course I AM NO DOCTOR and by NO MEANS think I "know it all" ... YET, when it comes to OUR BODIES most of us especially women KNOW things very well..... Sometime I feel as if I am "educating" my doctors, and sometimes they tell me, that I am helping to bring new light to the subject.

http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/52416?xid=nl_mpt_DHE_2015-07-03&eun=g773630d0r

In Remembrance, Reflection, Pride, and & Celebration. May YOUR July 4th Holiday be all you want it to be...

Have a Happy, Safe, and Wonderful July 4th Holiday Weekend!

 

I want to wish everyone a very SAFE, HAPPY, and reflective July 4th Holiday weekend! As I watched what the news had to say yesterday evening, it was pure shame I felt (even though I am not one of ""them") that our Grand Nation, has have to endure such horrific hate crimes, terrorist acts, and again "credible" threats enough to warrant each and every "celebration" especially in our huge cities, like Washington DC, New York, LA, and more to either have so many "patrols" out, or some have even cancelled their events due to the fact they feel it is NOT safe enough to even have a beautiful celebration of our Country, the USA! That also makes me mad, sad, and also even a bit fearful. Our small town has a "celebration" planned for tomorrow. We have now had a "Farmer's Market" that opens every Saturday to local growers, who come and sell their fruits, fresh veggies, and so forth. So, our town also is including some out of town vendors, even a small concert, and then a fireworks extravaganza* in the evening,, as well as one out of the Texas Motorplex, that they have been putting on for years for the holiday. Yet, even here, just because we are a "small town"... you NEVER KNOW... who could be a "lone wolf".... we have had our share of close calls in our country and the surrounding ones, and we don't live but about 35 miles from Dallas. So, we want to put aside our "fear" and think, "Oh, this would never happen here, not in our small community"... alas, sad but true, it only takes ONE person to create a horrific scene even in a small town.

So as we ready ourselves for cookouts, family gatherings, going to other celebrations, the lake, camping, and all of the many activities going on throughout our nation, be "viligant", watchful, and don't be afraid to "report" something you feel is "not right".... those types of "mindfulness" is what keeps us safe, happy, and being able to celebrate with family and friends...

I bid you ALL A Wonderful 4th of July Holiday Weekend... whether traveling, or at home cooking, wherever you are, be safe, be happy, we do still have much to celebrate and in so many ways... and Enjoy your Holiday! Hugs to All, Rhia Steele

 

FROM THE IFAA - Results from an in-depth study to IMPROVE EARLY & ACCURATE DIAGNOSIS of Autoimmune Arthritis diseases, as well as other AI disease that often are in Tandem!

Here is the link to this extremely important study of the importance of EARLY and ACCURATE Diagnosis when it comes to Autoimmune Arthritic Diseases, and other Autoimmune illnesses that often are in "tandem" with them. This report had hope of educating more of our Medical Professionals, Dentists, and Others, about these illnesses and diseases. It is SO Crucial to have an EARLY and ACCURATE diagnosis, so more Aggressive and targeted medications and treatments are done early, before so much damage has been done.

We have also seen and witnessed over the past couple of years SEVERAL often "very young people" are either extremely ill or even pass away due to the possibility that they were not diagnosed early enough, and had the proper treatments. That is just another reason why the report and others to follow are critical for all of us that suffer from these hideous diseases, syndromes, and illnesses.

Please see the report in its entirety at the URL below:

Early Symptoms of Autoimmune Arthritis Investigation