Friday, July 31, 2015

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

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

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

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

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

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

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

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

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

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

Thursday, July 30, 2015

"Cure Click" and a Few Informative Items

Trying to find "balance" between being a "Patient" and a "Caretaker"... a writer, a blogger, an Author, an activist, an Ambassador... and battling Lupus, RA, Sjogren's, Lumbar spine problems and chronic pain

I WILL BE SO GLAD WHEN THIS WEEK IS OVER!!!!!!!!!! I has been something everyday this week and today once again. AT noon Mom has an MRI on her lumbar spine. She HATES MRI's because of like many of us the noise and being so confined & be still... so I hope she makes it through okay. They did tell me that there is a doctor there at all times, & if a patient is extremely anxious, he can administer a really light sedative just to make them feel a bit more calm... where was that the last MRI I had??? I am not "fussing" about helping Mom out at all. That is not the meaning of this post. I know for her it is very difficult to go through all of this. In fact she missed PT yesterday.  Even though she has the schedule hanging right up on her calendar, she got confused I guess, so I went at 1:45 to pick her up, and she was not ready..... and when I said something about PT, she said today?? I said yes  - Mon. Wed and Fri.... all of this along with the medication I think the pain doctor gave her to take at bedtime so she can sleep, (she had not been sleeping due to the pain for weeks) it may have her a bit confused. She so rarely takes anything but basically blood pressure meds, potassium, Lasix, and Crestor... so having other meds in her system, I think has her kind of fuzzy.... hell I am FUZZY MINDED ALL THE TIME (LOL)!!!! Anyway she does know I am picking her up at noon today for the MRI... and then tomorrow she goes for the PT again. What I am seeing and thinking, if she goes a couple more times to PT, just about all they are doing for her, and some of it she is doing at home a couple of times a day anyway, she could probably go twice a week, and be fine. She can do the rest of it at home... and I do know she has been doing the exercises they showed her... I think that in itself, just not having to run out 3 times a week in this horrible heat, may help some. It is honestly so danged hot here, and we have a butt load of humidity to make things worse... I can't even stand in my kitchen giving the dogs their medications without sweating... insane. I have been turning the A/C off early when I first get up, then back on about 11 am or so, but I went and turned it on the "humidity" setting for now to dry out this "sticky, damp" feeling.... anyway, things here are nuts... I take my last round of antibiotics today for the cellulitis.... but the lump is not gone... so I am not sure if that is okay and the medications will continue on to work to get rid of it, or if it will just be a lump there for awhile, OR if I need more antibiotics.... I HOPE NOT the 3rd! They have really put me into one helluva tail spin with my stomach. Plus make me feel so tired and fatigued... on top of what my usual is, and I am just drained about all of it, but I don't want to wind up in the hospital either.. Mom will go in for the injections once the MRI is done and our pain doctor has the results. I figure sometimes next week, which will mean a VERY EARLY trip to Dallas, and way up Central Expressway to a surgery center on Greenville Avenue... so I don't look forward to that one either. I've just made this trip myself for my injections, and then the discogram a few weeks back... so once again, off to Dallas...

I am still quite puzzled as to why after all of the MRI's, CT's, X-rays, and tests on my lower back all these years, that not one test ever showed me missing the "lamina" that I was born without.... I've always said I don't think some of these scans and so forth are nearly as accurate at times... I can't think of one of them that was very accurate on me.... every time I've had a surgery, once the surgeon is actually looking inside, there has been a great deal more damage than what any "scan" ever would show.... even with my neck surgery, shoulder... knees... any of them... in fact I believe it was my cervical spine, the severe damage was in a "hidden" spot that the CT could not pick up from my understanding... so that makes me wonder how many of us suffer and doctors do these tests, and they don't look so bad, so they think we are just "making it up"... or it is not bad enough to warrant surgery and so forth. I have certainly fought with one doctor for 2 YEARS before they finally fixed my left elbow. I had about 19 steroid injections in it, before I found a doctor that did surgery right away, and sure enough the tests didn't show all of the damage....

I've also now am having issues with my right hand and fingers worse, but both hands and fingers. I've got swelling that is usually not where it is now, and I can barely stand to type for very long, and they hurt almost all the time. Always something... so to all have a good day.... I've got to do a few more things and then get ready to take Mom for the MRI.... more to come

"I feel as if I should have a full-time TV "Reality Show".... called "Chronic Illness/Pain patient - Caregiver This is MY LIFE! REALLY!

Wednesday, July 29, 2015

Lupus Patients in the Hospital and Infections on the Rise....

I certainly find this very frightening... Since I have "cellulitis" which I am still not so sure may land me in the hospital on IV antibiotics, plus I need to get my back surgery... even thinking about having Lupus, RA, Sjogren's and other autoimmune "compromised" issues... this is something we should ALL take into consideration. Now I feel we ALL need to be very proactive when we must be in the hospital, clinics, have surgery and so forth... we know that the "antibiotic resistant" bacteria's are out there and prevalent. Never would I have thought I would get cellulitis... yet I went in due to this "lump" on my top thigh... just in time before I did have to be admitted and given IV antibiotics... and even now, I've been on the two different ones now for 5 days... and this lump may have went down a tiny bit, but it is still there... so infections as even with my own personal experience as nothing to put off, and even more difficult to try and avoid...

Tuesday, July 28, 2015

Not my "usual" type of Post but I feel I it's a very important one... When Government, Big Pharma,Medications for "Chronic" Illness/Pain play a hand in your treatments

As I've said in Facebook about this post I am putting up now, I almost NEVER talk about anything "political" or "religious" on FB nor here on my blog.

Not that both subjects are a very important portion in my life, but it is more about how "personal" and private those subjects are to many of us. Not that I don't share some things "religious"... in fact I just posted over the last two weeks, that I have decided I needed to step back into fellowship on Sundays with one of our local churches.

I had talked about being raised kind of "Catholic" and "Baptist". My Mom was Catholic and came from a Czech background. So, when I would visit my Grandparents or go stay over the weekend with some cousins, I usually went on Sunday's to church with them.

My Dad was Baptist. He in fact was one of the "founding" members of the church that is way less than a block from my parents home, and through the years, for the most part that was where he was on Sunday mornings. I went with him many Sundays, in fact probably any time I was at home on Sunday morning, I went with Dad to that church. So, I had "leaned" towards being "Baptist" most of my Adult life, although I don't like to judge anyone else's faith. Faith, Hope, Praise, Glory... all words we so need in the days we face ahead, as a country, as a nation, and as a World.

Anyway, to finish that piece, I went this past two Sundays to one of our Methodist Churches and really enjoyed it. I feel I maybe going back and am even thinking about getting involved in own of the Sunday School classes where I would "belong"....

And as far as "government" actually I speak OUT a GREAT DEAL about our Governmental bodies, both House and Senate. When it comes to anything to do with chronic illnesses, arthritis, RA, Sjogren's,

Since any of these chronic illnesses lead to disability, to losing relationships. to causing severe pain, from physical, mental and emotional... we do not have near enough "research", medications, treatments, and the list of the needs when it comes to these most complex and complicated often almost "invisible" diseases, it MUST be that our government helps to play a role in getting many more specialists, more INSURANCE that COVERS treatments, rather than "denies" every claim. It is NOT the patients fault we are ill. It is also NOT our fault that the medications for some of these are astronomical. We are not the ones who "dictate" these costs. Yet, every day you see yet another new "medication" on the market for Lupus, RA, Diabetes, and so on and so forth... with the costs so expensive there is no way a patient can afford to pay for some medication that is 2,000.00 and MUCH MORE for a MONTH"S worth. I was looking at my medications (that happen to be MANY) due to Lupus, RA, Sjogren's, chronic pain, heart problems, and so forth. If I had to PAY out of my pocket for any of them... I surely would NOT be able to do that at all. So, where do you turn? You need these medications to "give you your quality of Life"... yet there is no quality of life if YOU ARE GOING BROKE to pay for your treatments.

I plan on adding more to this, but for now I want to get it posted.... so more to come on this subject...

Sunday, July 26, 2015

Even though Dealing with Autoimmune diseases, Chronic Illness and/or Chronic Pain, every once in a while it is OKAY to find some humor in life.....

Some of you may recognize this as soon as you see it. If you are a fan of a late night television show, then I am sure you will.

Plus if you were "born" in the era of a certain band, that had a couple of huge hits, you may also recognize this also.

Actually, right now I am in such "blah" (for lack of a better word) mood right now.

I found out that this "lump" on my left top thigh, was NOT just any old lump. I have cellulitis and that is why I have it there. I had been out about 6 weeks ago or so, cutting up some tree limbs, after all of the wind, rains etc... earlier in the spring, and putting them in a trash bin, so they could be gotten rid of. Well, I never really "felt" anything but I must have accidentally brushed my thigh against one of the limbs, and a very tiny piece, just a sliver of "bark" I think must have been just like a "sticker" or splinter and was in my thigh. A couple of days later, I noticed a red spot there, and it was kind of sore, so I was watching it, putting antibiotic cream on it, and keeping it covered. I just thought I scratched my leg doing something, I did not know at the time something was "in it".... but then I did see several days later, it looked like it has a bit of infection in it... just maybe the size of a head of a match, so I cleaned around it, and was able to kind of push around the outside of the place, and I saw this tiny piece of something come out of it. And also there was a tiny bit of yellow, but it was really nothing I considered to be horribly bad. I kept cleaning it, and squeezing around it, and for a couple of days, again, I might get 4 or 5 drops of what may have been a bit of infection out of it. But, then it began to seal itself over, and I no longer seen anything red, or warm, or looked like possibly more infection. So, I went on about my life, and really didn't even think much about it at all.

Then, it must have been about 7 to 10 days later, I was doing something and brushed against my thigh, and I noticed a small "lump" kind of about where that place has healed over. It did not appear like there was infection, not warm, not red, just a small lump under the skin. Well, as the days went by, I began to notice it was getting a bit larger. I still really never gave it that much thought, and in fact I figured with the way my body reacts with my autoimmune issues and illnesses, that it formed kind of a scar tissue under the skin. Yet, I continued to notice, that lump was growing, and when I decided to have it looked at, it was about the size of a silver dollar. It was not "soft", but kind of hard. It is sore to the touch, and as it got larger I noticed it would hurt a bit when I walked. So Friday, after doing some "google" searching, I kind of got concerned. More about the possibility of it being some type of cancer actually. From some of the different searches and sites I went to, all too often I noticed there might be someone who does get a piece of sticker, or glass etc in a foot and so forth, and after that heals suddenly a lump appears and it is cancer.

That is when I put the two and two together, and knew that lump had to be due to the sliver of whatever was in my thigh. OF course I have heard of cellulitis and was more familiar with it, in those with Diabetes. I knew that pretty often due to their sometimes not healing over quickly enough and also being a bit immune compromised, especially their feet and legs if injured can quickly turn into cellulitis, and even worse.

But, I guess my conception of "cellulitis" was more of "seeing a place, red, warm with fever, and opened up, possibly even have infection draining out of it. I did not know that you may have it "underneath" the top layers of skin, like mine, forming a lump of infection, that grows quickly and of course can spread quickly also.

But, once again my "gut feeling" took over, and I felt it was something that needed to be seen ASAP. Even if it were to be a "tumor" it still needed attention and I knew I should not put it off. So, Friday, early right after my PCP's office opened, I called. They are only open a 1/2 day on Fridays, as far as seeing patients, but she must have went back and asked my doctor whether I should come in or if it could wait until next week. So she came back and told me to be there at 11:30 Friday morning. Again, I still was not really considering "infection". The "signs and symptoms" I am aware of about something such as this, is what I said above... red, hot, feverish, possibly broken open, and/or infection that you can "see", would be what I would look for if I suspected infection.

Needless to say, I definitely learned something new in the medical world. I have cellulitis. So, #1, I DID GO and not put it off. If I had that may have landed me in the hospital for IV antibiotics (I am just praying the 2 oral ones I am on gets rid of it all)...both of them very high powered strong medications for infections.

Even though it had "appeared" that the sliver came out, and what bit of infection I got out, did not rid my body of the bacteria underneath the skin. Thus, this lump would have either continued to grow, spread the cellulitis somewhere else in my body, or it sure would have began to grow red, warm, and possibly show outside on top of the skin. It was bad enough I went for that many days without seeing my doctor. But, HE HOPES these two antibiotics will do the trick.

Anyway, one of them Rifampin has to be taken on an empty stomach! Well, you can imagine, I am already of the tendency, to get sick to my stomach, so put that in there, along with the other one Bactrim, and all of my other medications... and I feel like hell honestly. I have read and re-read about both of them, especially "usual" side effects etc.

Of course nausea, upset stomach etc.. is a major one for just about any type of antibiotic. But, I am also very fatigued, in fact as much as I wanted to go to church this morning, I just felt I a not in any shape to go at the moment. I have not slept well again in weeks.... between the stress of my own health problems, and now my Mom's; along with trying to get her to PT 3 times a week, plus she needs an MRI, plus our pain doctor is going to do the Epidural Steroid Injections... (transforminal). They in fact called Friday while I was in the doctors office. I guess they have already gotten the "okay" for the injections from the insurance company, and are ready to set a date up for her to have the injections done. On top of all of that, fortunately, up until about the last year or so, my Mom has been in good health, for her age. She will be 80 next month, and other than controlled high blood pressure, and a "leaky" valve in her heart, that for now they are also controlling with medication, Mom has no clue about any of this and the way they have to do things now. So, when she would go to the doctor, there was none of the extra tests, and so on... she thought she would just go to my pain doctors office, have the injections done the same day, and come home. As I had explained, no doctor that is a legitimate doctor, will put injections into your spine, without a visit to his/her office, having to schedule it with insurance also, and all of the other red tape that now goes along with procedures. So, that has not helped either. I have began to see, that even though I may go over things with her several times, she still may not "get it"... and I find myself explaining things over and over to her, often more than I think I should have to... but I know she is also concerned, been in more pain, that probably she ever had in her life so far, I still get concerned that she maybe a bit more "mixed up" at times than normal.

So, in some ways, I am also concerned about her memory... and even some of the things she tells me about, that happened a very long time ago, and I a JUST think to myself, wow did that happen? And if it did, at my age, why did I not know that years ago. I was around my hometown most of my life, so some of what she brings up and tells me, almost sounds "too odd", strange, "off", to be true in many ways.

Now, onto the REAL REASON for this post, and it seems I ALWAYS have a way of going "full circle" back and forth in order to "say" what I want to in the first place. That is the true "writer" in me for sure...

I am posting this graphic for all of you.... let's see if you recall anything about it! I know for me, I just about ROFLMAO when I hear or see it!

Saturday, July 25, 2015

Autoimmune Illnesses - Does Illness, Doctors, Tests, Treatments and Medications EVER END???!!! I am just totally wiped out.... A Week from Hades for sure!

Does it ever end? I DID get a new rug cleaner, and even got an extra $10 coupon off of it, so I have it at home, out of the box, and trying to get the "opt" piece to line up and then there are 2 screws to put in once it is all lined up. I was just too tired, too aggravated, feeling just sick, after an all day of running again yesterday. So, I DID GO TO THE DOCTOR yesterday!!!!!! I called and they told my doctor what was going on and he wanted to see me at 11:30 yesterday morning. I had already felt like something was not right about this growing "lump" on the top of my left thigh. It began getting larger almost each day. And it is about the size of a silver dollar or maybe larger. Sure enough, I have cellulitis. NOT GOOD! If I had not went in when I did, I may have found myself as an inpatient on IV antibiotics over the weekend. He said that he was giving me two different antibiotics, both very strong and in fact one of them they actually use for certain types of Tuberculosis. (interesting since I still need to get that Chest X-ray) and have NOT found time to get it yet! So, after I saw him, I had already been to Wally World and got the rug cleaner, and then I went by Mom's. Well, of course she had not picked up her meds yet, so I had to go get mine, one of them my pharmacy did not have and was not going to have it until Monday.... and it was one of the antibiotics, so I did not want to go without it if possible. So, I went across the street to pick up Mom's scripts, and I happen to have a copy of the prescriptions. They did have enough of the other antibiotic, so I asked them to fill it and I would pick it up in an hour or so... so I visited with Mom, explained her meds, and left to go pick up mine. Then I came home and was just exhausted. It was already something like 4:00 PM and again I had been "running" since about 6 that morning. So, I changed clothes took the medication and got on the sofa with the pups. But, I was just restless and honestly really concerned about this cellulitis mess. That lump has already been there about 4 weeks, maybe longer. So, it really worries me since it can turn bad very quickly, especially when we are immune compromised. I want to use my new carpet cleaner, but my stomach is just YUCK! I think it is the antibiotics. I have a billion things to catch up on.... here at home, online, and then I have 3 days of PT for Mom next week, plus I need to schedule the MRI for her, and then they called about the ESI (Epidural Steroid Injections) already and want me to call them back Monday to schedule those. So, I am not sure if the doctor wants the MRI first, or if he wants to go ahead with the injections.... but that means a possibility of either having a test or going to a medical "something" everyday next week! Plus I have not even had the time, nor the energy to go and have that damned chest X=ray yet. So, I am exhausted to the bone today, and feel like hell. Keep Mom in your thoughts and prayers... she seemed to be better yesterday, but we all know with especially "back pain" one moment you can be fine, and the next in almost unbeatable pain... so one day of feeling good certainly does not constitute it is over yet. I am going to try and stay online this morning and catch up on a few things. But, I will see how I feel. Right now I hurt all over and as I said, I have to take those antibiotics on an "empty" stomach of all things.... as if they are not bad enough to take with food.... I wish everyone a good weekend.... and I will be "around" off and on, just depending on how I feel. and by the way, THE MAYOR SIGNED THE SEPTEMBER 2015 PAIN AWARENESS PROCLAMATION!! I GOT IT in the mail yesterday... BUT they must have not let the ink dry enough before sticking it in the envelope, and a couple of the letters on a couple of words have been pulled away.... so. I am not sure even trying to "go over" those can fix it... I may have to have the woman that did it, redo it and send me another one. I hate to but I've tried to kind of go over them and it just looks horrible. I may try to scan it in, match the typeset and "fix" it in Photoshop if I can... I shall see.....

Sunday, July 19, 2015

Let The Water Come and Carry You Away....

I had posted a long post last night, and for some reason FB lost it! I know better, usually I make sure I copy them before I hit the "send" button.... but the jest of it was my thoughts yesterday about our lives, especially mine at this time, being like a "river".... we go through so many different aspects, changes, sometimes we feel they are not so great, and often we don't really grasp the "why's", when, how of life. I had really found comfort last night, in thinking about my life, and once again it evolving, revolving, and "flowing" forward... most rivers never flow backwards... thus once the water has flown under that bridge, it will never go back... such as life... once this moment is over, it is done... finished... just as by our "Higherpower" said about the "7th" day of Earth... "'tis finished"... and was also know ass when all happened as it did on the "Mountain" once his Son has passed away, again, Tis Finished.... I am not trying to "make" this about "religion" at all, but those events for my own personal self remind me, that I am in this place, at this time, for a specific purpose... why things have happened as they have I don't truly know... some I've had an "open heart to" and it seems I've found a "new vision"... I am seeing my own world, and all the world with new eyes, along with a new mind set.... no longer shall I "blame" myself for what I have no control over... we cannot control actions that we can't control.... we can't "make" or not make someone else do something, we cannot change the weather, or stop the rain from falling. We cannot stop Mother Nature" and even though we can gripe and moan about it, it is just as it is... and as is supposed to be...I really wished I had not "lost" my post from last night.... it was a "Revelation" for me... and the way I worded it was what came through my heart and mind so clearly... but again I also "can't" control Facebook either.... SO, what I will finish this with, as I go and get ready to attend church again this morning is - one of my very favorite songs.... the lyrics "fit" so well, and it was THE SONG I heard back when I was 21 years old... that on a fateful night CHANGED the direction of my "flow of life" forever. Had the events that happened that night, happened any differently, I may not even be here, or I could be "lost" in a sea of horrible demise... so the song.... the lyrics... - "so much time to make up everywhere you turn, time we have wasted on the way... so much water moving underneath the bridge... let eh water come and carry us away...."   We often "lose" so much of life, time, thought... by "wasting" it on the things we cannot control.... yet if you allow those waters to flow... underneath that bridge... it will certainly carry you exactly where you need to be... love you guys and gals that support me so much... Rhia

Wasted On The Way Lyrics

"Wasted On The Way" is track #14 on the album Greatest Hits [

"Wasted On The Way"

[Intro. (Acoustic Guitar and Electric Piano)]

Look around me
I can see my life before me
Running rings around the way it used to be

I am older now
I have more than what I wanted
But I wish that I had started long before I did

And there's so much time to make up everywhere you turn
Time we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away

[Instrumental (Fiddle)]

Oh, when you were young
Did you question all the answers
Did you envy all the dancers who had all the nerve

Look around you know
You must go for what you wanted
Look at all my friends who did and got what they deserved

So much time to make up everywhere you turn
Time we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away

So much love to make up everywhere you turn
Love we have wasted on the way
So much water moving underneath the bridge
Let the water come and carry us away
Let the water come and carry us away

Read more: Crosby Stills Nash - Wasted On The Way Lyrics |

Friday, July 17, 2015

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 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...

Saturday, July 11, 2015

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

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

WEGO - and How they have made OUR Voices Heard!

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

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...

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

  • Friday, July 10, 2015

    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....

    Tuesday, July 7, 2015

    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....

    Friday, July 3, 2015

    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.

    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


    Thursday, July 2, 2015

    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