Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts

Sunday, March 12, 2017

Chronic Pain, Weather changes, how they effect us, spinal neck surgery, cardiologist, orthopedic surgery and more....

It was such an awesome day yesterday! Shorts on outside, even did some "mowing" in the back yard with my weed eater! LOL! Yes, the darned WEEDS are so tall, there was no way to get a mower through them, so I had my cordless weed eater out there trying to get them down enough, so I can mow them, plus see how many fire ants are there. I had a bed a discovered in and around one of my front trees and it was "hidden". The other day I found it and it was almost knee high within that tree!!! So since I've been trying to take Peanut out to walk him, and getting things ready for the new puppy (who will be grown by the time I get over doctors appts and be able to pick him up)... after the battle with either shingles or something "biting" me... I have yet to figure out the welts on my arm, on the left arm and a few down my left side... just weird. I had windows open and it was amazing! Then I go out late last night, it was thundering really closely, close enough I even shut down my computer, and it was almost "cold"... we had a front come through and I did not realize it was going to get the chilly outside. So, I am closing windows, and this morning wrapped up in my robe again, and Peanut and I were on the sofa all wrapped up and too cool to even get up -

 I finally got up and warmed up some coffee, and it is just cloudy, damp, almost misting rain and darned cold outside. I just put out one of my huge plants, my fern yesterday because it was hating being inside, and I am in fear the darned thing was going to die, if I didn't get it outside on the porch. So, I heave it outside, but it will be fine. It looks like this is just a "fluke" as far as "cold" and we are going to warm back up... but it sucks... I HATE THE TIME CHANGE! I wished they WOULD LEAVE IT ONE WAY OR THE OTHER!!! It always messes my entire "internal" clock up and takes me two weeks to really get adjusted to the change. I know for some it does not bother them, but it really messes with me. I thought it was Sunday at 1st yesterday as I had posted LOL.. so then I did change my clocks last night, but I didn't sleep at all. I woke up every half hour it seemed, from having nightmares and stupid dreams... I hate nights like that. I had been doing so much yesterday inside and outside, I think I was almost too tired.... so that probably contributed to my not being able to sleep very well. 

I am so tickled at Peanut, he would not even eat "breakfast" with me... he went and got back on the sofa under the blanket and went back to sleep. He is getting pretty good about walking on the leash outside, if I can keep him from "eating" every weed or rock he sees! He is so bad like a toddler about everything on the floor or ground he thinks he should put in his mouth. It worries the heck out of me, especially since I've been putting out weed killer in places and putting out the granules for ticks, fleas, and other creepy, crawly things that shall be coming soon.... anyway, I go back to my Orthopedic surgeon tomorrow for my recheck on my hip. My pain pump is refilled and he upped my meds,


 I think I told all of you, and hopefully I will be able to get my neck surgery scheduled soon. I have an appt with my heart doctor in a couple of weeks, so she will have to sign off on the surgery also. My Orthopedic surgeon who does my spinal surgery is PICKY AND A STICKLER for me having all of my doctors say it is OKAY, and I have to have a chest Xray, a current EKG and such, before he will do the surgery, which is a good thing, just a pain in the butt to get all of it done, right at the time before surgery.... anyway, hope all is well with you in your corner of the world. I am probably going to be back on the sofa with Peanut covered up part of the day LOL! cold for me also and I am tired I guess from everything I've done over the past few days....

Wednesday, January 4, 2017

Talking about "enduring" ALL of the "complications" & Nightmares of being in the hospital after breaking my hip, surgery, Rehab and "conflicts" of other illnesses #WhatTheHealthcare


 #WhatTheHealthcare

To understand this, I fell and broke my right hip n 2 place the Tuesday before Christmas. I am STILL in the Rehab Hospital and everyday there is some kind of "kink" or some complication, and guess who suffers for it???? ME, the PATIENT!!! Here is the latest example.... besides being Anemic and having 3 UNITS of blood before, during and after surgery.... I've had a ROUGH 24 HOURS AGAIN!

They decided to do that liver sonogram and I didn't know I could not eat, drink or even have meds (which I was told they would come somewhere around 3AM or so do to the scan. Well, 3 passed by, then 5AM passed by, then 6AM and nothing to eat, drink, no medications, and by 6:30AM I was about a basket case... well over time for pain meds, my Valium, my muscle relaxers and so on. So, everyone was checking to find out why the scan was not done sometimes in the early morning.

He FINALLY SHOWS UP about 11:00AM.... now this is like 20 HOURS SINCE I've had anything.... the sonogram did not take long, and I was "buzzing" for ALL OF MY MEDS, and some orange juice as soon as he got through. So, thank goodness I got lunch, and of course my stomach is so "small" that I can't hold a great deal of food or drink at a time.

But, I got my meds, and drank the juice, then ate some of my lunch, and now I am just worn out from lack of sleep, and lack of meds on time.... so it's been a heck of a day and night before.... I gather he did the sonogram of my spleen, liver, kidney's etc...so if anything is causing the blood work to be "off" hopefully they will find out.

Friday, December 4, 2015

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

New Direction for my Next Book below...

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

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



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

 

 

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


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

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


 


 A latest Pic of Rhia!!!!



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

 

Wednesday, November 18, 2015

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

Wednesday, October 28, 2015

UPDATE!!!! Pain pump stall, My Mom's health issues and finding out today about this breathing problem and hoping it is NOT her heart valve & dealing with LIFE and Autoimmune everything!!!!

Okay everyone, please PRAY for MOM and MYSELF! She sees the Cardiologist this morning, and I PRAY her shortness of breath is NOT her HEART! She has a very "leaky" valve and I think I explained before why the shortness of breath... and our Cardiologist has had it under control with medications, and her not taking in as much fluid daily... but she has not been well at all over the past 2 months or so... and now her Kidney functions are low, which they were a bit better earlier this week but she still has to see a Nephrologist next week. I am praying the shortness of breath is possibly allergy related, because she does have allergies, like many of us, developed the late in life.... but if it is her heart, it could mean open heart surgery.... AND as far as my pain pump... I am NOT out of the woods yet.... it appears that it "restarted" itself out of the stall on Sunday... which is weird, because the Rep from Medtronic that saw me last Friday, had turned off the alarms, so they would not drive me nuts, but I kept hearing it go off, until Sunday.... but they had turned the medication basically to a minimum so I could take oral pain meds until we do surgery to replace the pump.... SO, yesterday my pain doc... did put my meds back going as they were... and he told me, not to get too excited yet, because it could do this again, and for the next 48 hours or so, I am having to watch it very closely... BUT, he also made a mistake when he reset the pump to send me the meds.... I have an "optional" Bolus every 8 hours... I can give myself an extra amount of medication... well he sat it WAY LOW rather than were it should be.... it was supposed to be 1.001 and he missed the decimal and put it at .1001 which is a HUGE difference... so now my bolus is really not doing a thing for me... that is just nothing compared to what it should be... so I called yesterday and left a message... but I guess I will here back today sometimes.... so between all of that, Mom, and now it looks like this stupid other "lump" on my right thigh is also in the process of going to "abscess"... it is now turning red and appearing like it might... plus I had been running fever off and on for a few days... which I thought was the pump issue causing it, but now I thinking this stupid lump could be the problem... when it rains it comes a flood on my life it seems.... lots of other things also... so there is what I know for now.... I appreciate all of you that are praying for us.... Rhia

Saturday, August 29, 2015

Updates on my "Lumps" cellulitis, Surgeon, Removing the Lumps, RA, Lupus, Xeljanz, Mom' injections - my RA giving me mortal heck with my fingers, hands, wrists... & more...

A quick note - I am BACK on BOTH Rifampin and Bactrum now for the FOURTH time! I did FIND a Surgeon Finally that takes my insurance! But, he could not get me in until a week from yesterday, so next Friday! In the meantime, the 1st LUMP began to show "outer" signs of "infection I thought. It was NEVER red or all that sore through the whole ordeal. But, last week about Monday, I began to notice not is it only reddened on the top of the skin, it is also, seemingly "puffy" and sore to the touch. The "smaller lump" is now also a bit larger, but also sore as heck to the touch. In fact just walking sometimes makes them feel tender and sore. So, I called my PCP yesterday and he put me on another round of antibiotics until i can get into the surgeon.

ALSO, some GOOD NEWS FOR A CHANGE! My ECHOCARDIOGRAM came back with a "small bit better as far as my heart function from the last one" which I've not had one since 2011... and I was scared that it might be a bit worse, so hopefully that is good news... but you also hear all the time of people having their heart checked out, having the echocardiograms, ad all seemingly well... then a day or so later, they have a heart attack... so I am trying to stay within the "positive" aspects... also I finally got the CHEST X-RAY!!! I thought that mess would NEVER get straightened out...but it is done, and the report should be at my Rheumy's office early next week. SO, my HOPES are that we go ahead with the Xeljanz BUT I don't think they will put me on it, until we know for sure what these lumps are... if infection, then NO until it is completely gone... and hopefully - due to my RA, being more severe than ever, I am losing a great deal of grip, fingers are so stiff, and visible swelling in my hands and some in my wrists and ankles... along with pain, that had not been this bad... but I have not taken any Orencia now in 5 weeks... still taking everything else... but I fear the Orencia also due to not knowing what these lumps are. Also, my MOM celebrated her 80TH!!!!! Birthday yesterday!!! But, she is having heck with her stomach... we did have a "bug" a few weeks ago... but hers seems to be something else... so we did not even get to go out and eat, and I so wanted to take her for at least the day to celebrate... but she is just not up to it..... Okay more later.... ;)

Thursday, August 6, 2015

Trying something new - A "daily" Online "Paper" about Autoimmune Illnesses, Writing, Chronic Pain, Family, Coping, Surgeries & more

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

Autoimmune Arthritic Systemic Life Daily – Rhia

 

A "Daily online Newspaper"  I am "Customizing"  for my own interests, advocacy, activism,Ambassadors, Illnesses, Family and Coping...


This is new for me.. not sure if I will keep it.. it depends upon time, and all in between. I don't want to begin yet another "tool" since I really need to put my efforts into finishing my 3rd book and my blog, advocacy etc. But I thought for the moment I might give this a try.

Wednesday, January 14, 2015

The Arthritis Foundation - Becoming an "E-Advocate" and How YOUR VOICE DOES MATTER!!! YOU CAN make a DIFFERENCE!!!

As we begin a Brand New Year with New Congress Members of our 114th Congress officially now in. We want to further our cause on the issues surrounding Advocacy for Arthritis - Ra and Osteo, plus Juvenile Arthritis. I would love for you to joint MANY others around our nation in support by being an "E-Advocate" for the Arthritis Foundation. You never have to leave home, and your input can mean SO MUCH when it comes to legislation about health, from medications and the "tier" programs, to making Medicare sustainable, to giving out funding for so much needed research in order to give "a quality of life" back to the hundreds of thousands of women, men and children that suffer from these horrid diseases. I am including a link to the page where you can sign up and also read more about being an "E-Advocate". My emphasis on "YOU MAKING A DIFFERENCE" is critical. Because I used to think probably what you sometimes think "Oh, how can I, one voice make a difference?" Well, I can tell you from personal experience that YOUR VOICE can move mountains. Also, your members of Congress DO HEAR YOU! So, you helping to send your opinions and how you feel on health matters - does matter! I urge you and I know many of you have a "full time" plate, of family, children, jobs, and living, and also many of you are dealing like myself, with chronic illnesses like RA, Osteoarthritis, JRA and many other illnesses very much related to these... whether it be other Autoimmune Illnesses, such as Lupus, Sjogren's, MS, Myasthenia Gravis, MCTD and the hundreds more (I met a woman yesterday who is a lab tech and drew my blood for some lab work - finding out she also has an autoimmune illness - at 25 she suffers from Diabetes 1) ... so "we" are out there... and finding your "niche" where your voice can be heard is an incredible thing to do. I can say without any hesitation that my advocacy with AF, IFAA/IAAM, Lupus Foundation, WEGO Health, my "consumer reviewer" with the DOD I served as last year, my trip to D.C. with the A.F., my work I did with IFAA and all they continue to achieve is just almost mind boggling, my blog, my writing, my Facebook posts, as well as groups... and then illnesses such as FM/CFS/ME (that I continue to feel are all autoimmune related illnesses) .... and so much more... being a judge for WEGO Health Activist Awards, getting to tell my story on Capitol Hill last year and then again a couple of times in the year to my Congressional Representative and my Senators.... and now I would like to further my own Advocacy in my State... I feel it is crucial that we make headway in Texas on a State Level of our Government with these illnesses. It means getting our State Congress on board, and even down to our County and Town people in positions of government, all instrumental in making great things happen when it comes to health care, medications, research, and healing those who truly would love to have another "normal" day in their lives... most of us wished we could gain just a portion of our "quality of life back"... and that in itself would mean the moon and stars to so many of us... as patients, as caretakers, as family, friends and often even our medical providers. They would like to have more options to address our every growing and changing autoimmune illnesses, chronic pain patients, those of us that our joints just deteriorate and often there may not be a "good" explanation as to why... yet they would love to be able to know themselves and to be able to tell patients the "why's" and "how to" fix them. After the numerous surgeries I've been through, more than I can count on BOTH hands... I can say, that the thought of having to undergo another surgery honestly scares the hell out of me... even the idea of being ill enough that I may need to be hospitalized terrifies me. Each night I pray that I will NOT be ill, especially never again so ill, I must undergo a hospital stay. After knowing what I know, and then watching an hour documentary just yesterday, on just how many "Superbugs" there are just lingering around every nook and cranny of a hospital, it terrifies the hell out of me.... With an already very compromised immune system... with illness, and then even more compromised due to medications, the idea of going into the hospital already ill, and hoping I don't become even worse in there than before I went in... just puts me in a place of mortal terror. The last bout I had with double pneumonia, and had a fever so high for me at 103 degrees that I was literally hallucinating, could not type, could not walk straight, could not see... and if I had not finally figured out to check my temperature, at the time Jim was still in the hospital, so alone it really didn't dawn on me.... then seeing how high my temp was, and in so bad of shape I did not even trust myself to drive alone.... it really was yet another eye opening experience for me. I got by the "skin of my teeth" from being hospitalized. Because my temp was not going down initially even with Aspirin, Tylenol, and so forth... and having it in both lungs... I convinced the physician at the Urgent Care (he also is an ER doctor at our local hospital) and I knew him... to allow me to go home first, and see how I was in 24 hours with medications... he still was almost to the point of sending me via ambulance to the ER... but I swore to follow his rules, and if the fever got any higher, or I became more ill, I would immediately dial 911 and go to the ER... thus I avoided that one. But, here I am already a compromised immune system, Jim had then been in the hospital about 3 weeks out from the accident... he still was so out of it, he was not able to truly grasp the idea that I was so ill I could not at all come up to see him... and for a full 10 days, I stayed HOME, on the sofa, taking my meds and doing exactly as the doctor told me. The very last place in the world I needed to be was in the hospital myself. So, as I tell my own dilemma from 2014, my point is that STILL when I could even through the entire ordeal with Jim's accident, my own illnesses, then the whole situation with the Sjogren's and my teeth literally falling out weekly, then getting Jim home, to proper doctors, getting medications, finding how the hell to survive the ever growing costs of meds, doctors, since there is NOTHING to pay any of it but us.... to my own issues with all of the dental bills also NOT COVERED... and fighting (no pun intended) tooth and nail for Humana to freaking pay... IT WAS AN ILLNESS that TOTALED MY TEETH, not a "DENTAL" problem... and the vicious cycle and circle carries on. So MY FIGHT is the "good fight" for ALL of us... it is time to put the USA on the World MAP as being a "premier" nation that DOES FIND CURES or WAYS TO PUT THESE HORRENDOUS ILLNESSES INTO REMISSION... to stop the damage they cause.... and we NEED YOU... and your voice also.....


http://www.arthritis.org/advocate/join-the-movement/sign-up-to-be-an-e-advocate.php#

Thursday, January 23, 2014

A Bit Out of Commission - Surgery and home recuperating

Hi All,

After double hernia surgeries yesterday, I am home, a bit in pain, and sore, and up and down, trying to recuperate. :)

I appreciate all of the well wishes and prayers... and bear with me as I shall be hopefully more up and around in about 2 or 3 days.

I have huge plans for my blog, and for helping with the Systemically Connected Blog for the IFAA!!! I am so looking forward to helping Lorna!

I also loved the "Blog Leaders" and all of the interviews we had last week! That was so much fun! I am getting each of you up on my "blog list" here. I have some already, and as soon as I am a bit more able to sit and think ( I am a bit still foggy from the anesthesia.... I will get everyone's listed!!!


I look forward to Kirsten and I getting to meet in D.C.!!! I got my flight booked and my room booked! Now just figuring out how to take my entire closet!!!! LOL!!!

More to come... please keep comments coming... I would LOVE to know what YOU want to see....:) Rhia

Sunday, December 22, 2013

Blogging My "Real" Life as an Autoimmune Arthritis "Victim"

Some May find my "Blog" a bit Different, so I want to give more of "me" to you... 



I realize that my blog may be a bit "rough around the edges" at times. I would much rather tell it like it is daily in my life. I prefer not to "sugar coat" daily living with autoimmune arthritis, chronic pain, and health issues that almost control my every waking minute!

So, rather than try to sit here, and find ways to give people a look at what myself and my family go through in reality. Doing that to me, is giving you, as another victim of these horrid illnesses a chance to know it is "okay" to be angry, upset, have bad days, say what you feel, not sugar coat your own reality, not have to try and hide the fact that your life is also just a mess at times because these illnesses overtake every step you make.

When you have a flare, nothing is "nice". Everything "sucks". Life is truly Hell! So, I could write about my medications, or find anything else to sit here and say, but that would not be what I need to give those who are following me a "false sense" of the days when you feel like you've been run over my a train! Times when you are on your sofa, or in bed, wishing you could have a break from pain, fatigue, shingles, mouth ulcers, rashes, stomach issues, kidney problems, medications that cause side effects, and this list goes on and on.

When these Autoimmune Diseases decide to enter your life, nothing, and I mean NOTHING is the same!!! You have to "adjust" your life in all ways. There are things you can't do sometimes. Like go out with the girls shopping, or meet the guys after work for a beer. Family get togethers, may find you smack middle in a horrible flare, or worn down from a new infusion, thus you feel guilty yet you feel like you will just have to sit this one out, (probably more like lay this one out). Your "normal" routine of life is completely turned upside down. Often you wake up with pain, and stiffness, that makes you have to take additional time to get up and get going. You find yourself slower at everything. It once took me about half an hour to get dressed to go somewhere. Now I better start at the very LEAST 2 hours ahead of time. Sometimes more than that, depending how I feel that day. You may not have the strength to do laundry, vacuum, dust, clean the bathroom, and make a fabulous dinner. More than likely if you get a couple of things done, and a meal on the table, that is a "good day". Shopping becomes a living nightmare. If you have a huge market or are going to a large store such as "Wally World" by the time you get in from the parking lot, you feel as if you walked a mile. Then if you are truly shopping with an entire list of things, that means "hours" of going through that humongous store!!! Then if no one is with you, that means taking that entire basket full to your vehicle, loading your purchase into your vehicle, and then trying to put a basket somewhere hoping one of their places for baskets is close!!! Plus, I bet many of you have this happen... I have a "disabled parking" plackard. My orthopedic surgeon wanted me to have one when I went through all of those knee replacements, then just all of the other illnesses, shoulder replacement, neck surgery... so I have one.
If you are not absolutely limping, have a crutch, or in some way look "disabled" boy are there the "looks" that you get from others!!! Thus the business about you do not look "disabled" or sick! Now I am one that uses mine sometimes, and at other times I park in a regular spot. If I am alone, and I am there to buy a large bill of groceries, or I am in a flare, not well, weather truly bad, I use mine. But if my husband's with me, or I am feeling okay etc... and especially if there is only one left, then I just ry to park in a normal spot so someone else can use it.

There are so many ways our lives are different. Some of those differences are just almost too difficult to deal with. Vacations you may miss, your hobbies that you used to love. I have a dear friend who loves sports. She used to play baseball, softball, and loved so many sports, yet RA has damaged her wrist and hand, thus that ended her ever playing ball, or other sports she so loves again. I hear story after story. For me, things such as running, snow skiing, mowing my lawn and doing yard work is out of the question. Bless my neighbors heart, he sees I've bought plants, or need to weed the flower beds, or mow, and he insists on doing all of it, and never wants to take a dime for helping. But I know he and his wife and two kids have a difficult time making ends meet, so I always give him money and tell him it is "for the kids"... LOL Then he will take it. :)

Sometimes we see family and friends all but disappear from our lives. It could be for several reasons. One might be there are those that just don't do well around someone who is "chronically" ill. Not in a bad way, but they can't take watching you in pain and suffering. So, they tend to not be around as much as they may have been. Others are just "busy". Since you have "slowed" down, and they are still in that "run, run run" mode, they don't want to be slowed down due to your illness. It sounds horrible but I know it's true. Others just fear the entire ordeal. Either they "fear" it is contagious (sounds ridiculous, but I had someone ask me if it was), or they fear it will cause them to be in a "mental anguish" if they see you in a state of illness. Some are in disbelief that you are that sick. Some family and friends are in "denial". They feel you are making all of it up. They feel it is just like, okay so your knees hurt, or your wrists hurt, well others have "arthritis" & they are up and doing fine. Some think you are a hypochondriac. And that if you would just stop all of those "harmful medications" and take vitamins, eat "right, exercise,  you would "feel better". Or there are those that every thing they see online or on the Television they think it is what you need! My Mom is bad about that? She doesn't sleep, so she watches those stupid "info-mericals" all night. Then when I go over to her house, she has all of these names of rubs, pills, etc. that should "help me". So, I have to come home, get online, prove to her the stuff is pure "quackery" and let her know none of it will help me, nor anyone else! Bless her heart, she is still in that "zone" due to her age, that every thing she sees, hears, reads, she totally thinks it is the truth! She gets phone calls from sales telemarketers constantly. She used to listen to them6, and believe every word they said. I had to put a "no solicitors" sign on her front door. Again she was constantly bombarded with people trying to "pave her driveway", or "insurance her water pipes", or "save her money on her Electric bill".

Speaking of my Mom. I am here to help her. I am an only child, thus I feel it is my responsibility since my Dad passed away in 2005 from complications of a knee replacement. She was and still is in many ways completely clueless about the world. Even small things like using a "debit" card, or putting gas in her car, calling in a prescription refill & putting it in the "automated system". She would not even learn how to use a DVD player we bought her. Dad did it all. Bill paying, handling money and investments, from putting gas in the car, to mowing the lawn, or taking care of just about any and everything. Which was great, BUT he NEVER taught Mom how to do any of it!!! So, when he passed away, it was total chaos here. We did move here, from Seattle, so we both would be close enough to help her. Of course I was already in need of several surgeries, so my first couple of years here were spent in the operating room and recovering. I helped her until I finally got my total disability rewarded, then it I could finally get to the doctors I needed to get to. At the time though I had not gotten the "autoimmune arthritis" diagnosis. It became apparent as the orthopedic surgeon was in my knees, shoulders, and so forth that this was not some regular "osteoarthritis", there was much more there in damage than it could have done so quickly and so early in my life. It was not long after a couple of surgeries on my shoulder and both knees, that my PCP put it all together and diagnosed the "autoimmune arthritic" illnesses. I began to have all types of symptoms.

Back to Mom now that I've given you a bit of "history" about her. So, I also have to do many things for her. It is not usually a huge issue, but there are days, or even weeks that I am busy enough, or have a flare, that trying to take care of "me", and then trying to take care of the house, and then all of her things going on, becomes almost overwhelming. You would not believe the mess that I had to go through with her insurance and the surgery center to get her surgery bill paid correctly! I spent over 6 months trying to get the to "code" the surgery correctly so the insurance would pay. I was treated like trash, I was spoken to like I was an idiot, I was "lied" to, because for 3 months I was told the "supervisor" had to handle it, and she was "out" with surgery. It was all a bunch of bull. I even went out there face to face and they basically said I was wrong, and I needed to just leave. That was in front of all the people in the waiting area! Well, I knew that the orthopedic surgeon did have his own personal funds in the center. Several of our doctors got together and opened it, with another company's help. So. I went to the "big boys". I wrote a letter explaining ALL of it. I had names, dates, what they said, etc. and I told it all. I took it to my doctor's office. About 2 days later, not only did I get a call from my doctor, I got a call from the head gentleman over the entire center, with a HUGE apology!!!!! They were "grafling" at my feet, trying to make amends for the stupidity and ignorance of their "staff" the worked with filing insurance claims. Plus not only was Mom one of the patients that had the same insurance and they had tried to say they owed money that they didn't owe either. The point of me talking about this, IS because all of that took my time up, and lots of it. Even when I was home, ill and certainly not feeling like talking to those "morons", I did it, because it had to be done.

I realize that I certainly not the ONLY HUMAN on this Earth with some type of chronic illness/pain. I also have come to a real eye opener. That is we have a tremendous amount of our population all over the WORLD suffering from Autoimmune Arthritic Diseases!!! And in bringing those facts into the entire realm of this blog post, they also are subject to losing friends, relatives, not having a care taker, or they are a "care taker" for a family member or even possibly a close friend!

So, how do we "balance" the situations? We NEVER know when a flare or symptoms are going to pop up. We may feel great in the morning and have shingles, fatigue, pain, or any number of problems within hours. So, it is almost impossible to try and "estimate" how much or how little you will have the "physical" ability to do. The ONLY way I can do things, is try to make arrangements ahead of time. But, if somethings happens to me, or I am ill, I try to have an "alternative" plan ready. Fortunately, up until about 6 weeks ago, my husband can "step in" and take Mom to the doctor, or run an errand, or whatever she might need, he can handle it.

Of course as "Rhia's Law" might have it, my husband has been in terrible pain. Between going to a clinic and having a MRI, that shows the pain in his shoulder is coming from his neck. Well, I can certainly relate. Same Story with my last surgery. Almost my entire cervical spine was a mess. I had a 4 level discectomy, fusion and 2 replacement discs. So, I totally understand his situation. But, now my "caretaker" is out of pocket. I've had to basically "buck up" and pull not only My "Weight", but HIS and MOM'S also. Now he is in bed with some type of horrible flu, bronchitis or something. It happened suddenly night before last, and I pray I don't get it. I've disinfected everything in this house 10 times! And I am staying as far away as I can. I fear if I catch what he has, I'll be in the hospital with my immune system as it is. I've already been exposed to more than I care to think about having to be at clinics several times with my husband and Mom.

So, WE (WE - as in ALL of US with AUTOIMMUNE ARTHRITIC DISEASES) can and do have a great many "mountains" to climb. We also know about those deep valley's. They can take you in so quickly and put you right down at the foot of the mountain you just climbed up. Of course we also have "rewards" in the sense of the term when it comes to "us", "we" when the time comes for us to assist those like ourselves into a direction of wellness!!! When we use our voices, social media, writing, blogging, sharing, volunteering; ALL of those things are divine intervention that shall lead to better and quicker diagnosis, much more aggressive and earlier treatments, that then can HALT some or much of the damage these diseases do!!! It is "too late" for me. I have so much "damage" that even though we are trying to aggressively work on it, I already have most of my joints either replaced, and the others will probably have to be, hopefully not, but it is a good possibility I face that in my future.

BUT, until the moment I can no longer type (so I will find a program I can speak into and it will type for me), my heart, my soul, and my mind is set on the GOAL of HELPING others! Standing up with other like minded wonderful people that also share in my heart's goal!!! Through our struggle, and trepidations. we have found STRENGTH today and we stand United in our goals to change the face of Autoimmune Arthritis Diseases forever!

So, this is much of "my life"... day to day... and now the part here at the last is the very best. It is my new opportunity I've found with the IFAA, as an Active Volunteer. I've also been able to be able to give my own story to WEGO when I was invited to be on a panel. My blogging shall also continue to be not only here but on the IFAA's blog site. And with the upcoming WAAD14!!!! there shall be AMAZING THINGS FOR EVERYONE TO GET INTO THE Online CONVENTION in early 2014!!! There will be more upcoming information as we get closer to it! So, I'll post more when I know details... Take care of YOU!!!! Then you can help others....











Saturday, December 21, 2013

Annual Family Christmas Letter for 2013....

                   How Can It Be Christmas 2013 Already?



I’ve been contemplating over writing this “annual Christmas Letter” for weeks. Although it is a tradition, and I am not one for altering traditions; life in itself gives you no choice BUT to alter, change, move, forward, backward, and sometimes even upside down, as far as the traditional sense goes.

I do just sit here in wonderment of just how quickly this year has flown by. It seems each February that rolls around (my birthday month), makes that year fly by swifter than the one before. As kids we fuss that it takes such a long time for holidays, a new school year, Summer to arrive, time for us to have our driver’s license, time to graduate… 
After you are out of school, in a job, possibly have a spouse, a family, and all of the hustle and bustle that goes with those things, time seems to “turn a page” in a greater way than the years before. Marriages seem to go by more quickly, kids grow up just all too fast, and then you are again by yourselves, with an occasional visit from the kids and the Grand kids. 

As I watch my own Grand kids grow, they are also growing from one stage in childhood so fast, and the next thing you know, they are like my Grand Daughter Heather. Here she is a teenager and getting her driver’s license as they turn 16 in the blink of an eye. My oldest Grand son James jut turned 8 on the 6th of December. As I looked at all of his  birthday pictures on Facebook earlier this morning, my memories were of him, just practically a newborn a few weeks after we moved back to Texas in 2005. I am amazed as I think about them visiting at that time, with their first newborn son together; yet now their is the 2nd one Logan, who is sure not a baby anymore either. It was so cute to see Logan right beside James every step he made in those pictures! He follows his “big brother” around everywhere he goes. Then again I see Heather, the oldest as a young woman, not the tiny 2 year old child she was when I first met her. Time has flown by, and it does just seem to fly more quickly with each turn of a page in life. 

We tend to take “time” for granted. So, rather than spend this moment of time fussing about how time flies by, I’ll spend these few moments to let you know a bit about the homes of our families.

Mom is doing well. In fact, she is doing much better than the rest of us in many ways. Her health is good. But, she did go through a bit of a scare with her heart earlier in the year. She had been a bit short of breath, but she called me one morning to say she could not even walk to the mail box without being very winded. So, I called, got her into the doctor, and they thought it was her heart. They wheeled her over to the ER at the hospital next door. Her EKG, blood work, and all indicated she did not have a heart attack, so that was a good thing. In fact her doctor kept her overnight, and monitored her heart, along with doing labs every few hours to make sure nothing was awry. He wanted her to see a cardiologist just for the sake of making sure all was okay. in fact I took her to my own cardiologist, who is just wonderful. Dr. Meg Sullivan put Mom with a couple of other tests, and one was an echocardiogram. There was a “severe” abnormality of her mitral valve, which would not have been caught on an EKG or blood work. It was “sloppy” and loose, thus blood with oxygen is not all getting where it needs to be, thus causing her to be out of breath. The first “echo” was showing this in the “severe” range. That usually means open heart surgery, the only way to repair that valve. I think they have some doctors doing it with a scope, but I am not sure just how well that is going yet. Anyway, I asked Dr. Meg if we could do something “else” before we consider going through a huge surgical procedure. Mom was of course stunned and certainly NOT ready to even think about open heart surgery and I was also quite stunned myself. I think our cardiologist saw that neither of us were exactly thrilled and in fact both of us, Mom and I were in shock. That was the last thing we expected to hear. So, the doctor did suggest that Mom could “increase” one of her medications, Lasix, so it would take MORE fluid from her body. With that, even less sodium intake, adding more Potassium to her schedule, and “decreasing” the amount of fluids she drank daily. Believe it or not, it worked! The Lord was certainly on her side and all of ours. Two weeks after she began this routine, they did another ultrasound on her heart. Not only did the issue go from “severe”, but decreased that “sloppiness” so much, that her mitral valve was almost “normal”, rather than appearing diseased! Talk about miracles! That was a miracle. So far, that was at the first of the year, she has not had any real issues again. I am sure it may come to give problems some day, but for now, she had a 6 month check up about a month ago, and all appears to be well. I was extremely thankful. Mom has been so very fortunate health wise, that I am not sure she would stand to go through something that dramatic as far as a surgical procedure. She is having some horrible pain issues with her right shoulder. It has gotten so bad she is unable to even comb her hair. I’ve been fussing for her to see our Orthopedic surgeon. I feel it could be her neck, since I went through much of the same with mine. After having a shoulder replacement on the right, then also having cervical neck surgery due to continued pain in my right shoulder blade, I fear her issues could be cervical neck related also. Other than this issue with her shoulder, and of course she is having more problems with arthritis, and a bit “feeble” like having to watch going up and down stairs, holding onto rails more, and that kind of thing, she is doing very well to be 78 years old. She sends her love to all.

Both Jason and Amanda; along with Amanda’s husband and three children are all doing okay. Jason recently took a job not far from where Amanda and her family live; about 30 minutes out of Corpus Christi. So, he spends quite a bit of time with her and her family. I  am happy that they have one another close now. They have been close to each other, ever since they grew out of that “kid sister - older brother” stage years ago. It is wonderful to see them enjoy one another and have a good relationship. She stays on the go as usual. Never a dull moment with the three kids and their friends and families. She just doesn’t know “yet” how to sit still very long! Reminds me of “me” when I was her age. 

Jason decided to change a few things in his life. He is out of the career for now of any type of law enforcement, and is now working for a company out of Corpus Christi in the oil business. He seems to like it, and it seems to be less stressful, of course than the law enforcement jobs. Jason has some issues health wise with what seems to be symptoms of Fibromyalgia. He has had “aches and pains” with his joints for several years now. As of this past year it seems that some other symptoms have cropped up. These newer symptoms seem to exemplify more in the range of “FM” (Fibromyalgia)/“CFS/ME” (Chronic Fatigue Syndrome). He has been taking some medication that seems to be helping and our hopes are that he shall continue to see improvement, and be able to continue on with all of his dreams and plans for the future. 

Well, “our home”. Actually things have been not nearly as “upside down” on the health front as the past few years had been. In saying that, I have had “new symptoms” and side effects from the Autoimmune Arthritic Illnesses. They have not been the most pleasant to say the least. I suddenly developed “double vision” the first part of this year. We first thought it was because I was not getting much sleep. So, I was overly tired most of the time, thus it was effecting my eye sight. I went through several doctors/specialists, lots of tests, including a “temporal artery biopsy”, and in the end, one of the best specialists in the field told me, “Frankly, he thinks it’s the Lupus, but is not sure exactly why it is”. He put a totally different type of glasses on me, with spheres in both lenses. They do a great job correcting the double vision, while I am wearing them. With them off, I still see “double”. Although we are still a bit baffled by it all, we also know when it comes to these autoimmune illnesses that have kind of “taken” over; there sometimes it just “not” a “diagnosis” or “explanation” but to say it is one of those. 
I have made change in the RA medication. I am taking “infusions” every 4 to 6 months. The hope is that this medication will somewhat control the RA pain AND our greatest hope is that it will slow down the progression of the damage to my joints. I have my thumbs that are just in terrible shape. The use of my hands continues to get worse each year. Until I have just about lost all use, or the doctors insist on “fusing” the thumb joints or replacing them, I just do things to help assist me in opening things, buttoning, holding and so on. My only other “oddity” is that I recently developed an “oval lump” on my lower left abdomen. I was at three doctors, had a sonogram, and no one could figure it out! (what’s new)… Finally, one of my regular physicians’, PA (assistant) saw me again, and “bingo” she found the problem right away. Of all things I have a “hernia”, actually I now have 2 hernia’s, one on each side; left and right. Only me! From all I have read and been told, hernia’s (inguinal hernia’s) are EXTREMELY difficult to find in females. Plus, they are usually “genetic” in nature. When we are in the womb, well before even “sex” is determined there are two tubes that form, and after that then the “sex” of the baby happens. But, those “tubes” especially in females can be “weak”. That weakness tends to run in families. So, as my PA told me, my own daughter could be subject to having a hernia or hernia’s also. It is only genetic as far as they know, more on the female side. Even though male babies, often have a hernia(s) when they are born, or very small. But those in themselves, supposedly are not “genetic”. I thought it was “wild” but I did some research and that is exactly what I found. I guess we learn something new no matter how old we are. Life to me stays absolutely fascinating for that reason! No matter how lousy I feel, or what is going on, I still love learning something new all the time! Especially when it comes to the “medical realms” of life. 

Jim, is also having one heck of a time with a shoulder/neck problem. He recently had an MRI, and in fact we have not gotten the results as of the time I am writing this letter. Our hopes are, and fingers crossed, that he is not facing surgery. But, it just does not look good. He stays in a tremendous amount of pain, and of all things, the pain is almost unbearable each time he sits down at the computer to work. Well, being the he designs and develops web sites as a career makes it a bad situation all the way around. I pray that rather than be some that needs surgery, that it may be something that is a “chronic inflammatory” process, which possibly corticosteroids in a larger dose, for an extended length of time, and some powerful NSAID”s maybe the answer. Surgery is just not something he wants to face at all. Plus he is without health insurance at the time. As anyone knows that works for themselves, with things in a mess as they are in our country with the health insurance situation, we are not sure how we will face something surgical in nature. But, I know that our “Higher Power” is watching over us, and “He” will make everything happen as it should be. 

I swore I wouldn’t make this long, but here it is, long as usual. I’ll just say a couple more things. I did have my 2nd PUBLISHED book go out earlier this year. I now have TWO books published, and they are on amazon.com   …   I use the “pen” name of “Rhia” or “Rhiannon” Steele. Both are Poetry/short Prose books, and are named “Ramblings of A Seasoned Soul” and the other is “Time Tattered Musings”. If you want to and have a moment look them up and you can “Look Inside the book” on Amazon, on both and read a couple of pages in them. My hope was to have a “3rd” book out by now. My “dream” to  be a “published” author has came true twice! Yet, my ultimate dream is to have the journey of my life in a book published. I have the entire “story” in bits and pieces all over my computer as well as in my blog online, and dozens of “handwritten” journals I’ve kept since I was around 14 years old. Every time I try to “begin” the book though, I just never quite come up with how I want that very first paragraph, page; the first chapter to sound. All of us have “a book” in us, is what I had a dear friend say to me. In a way that is so true. We “all” have a story about our lives, and how we got from point “a” as a youngster to point “b” in our present, plus we have ideas about point “c” where we hope to be in the future. But, some just never write it. I want to take that step and tell my story. Much of it, I’ve never shared with anyone. Much of it, I have shared but with only those I felt could totally understood where I came from. Yet, everyone that knows me well, especially Mom and Jim, have continued to encourage me to write “the” book, book… as I call it. 

I hope to accomplish that “dream” and write the “ultimate”, “Book, Book”, this year. That is if the “Lord willing and the creek don’t rise”, as the saying goes. As far as the “rest” of our family, “Tazzy” and “Bubba Gump”, our two “fur kids” are just as spoiled rotten as ever. They are getting older also as we can tell. Tazz, our Pug, is the oldest. She came with us from Seattle. That was in 2005. She was about a year old then. Bubba, is a
“Chi-Weenie”, and he is a character. They both keep us laughing, and talk about “separation anxiety”. They “cry” if I or Jim leave to go to the store! Bless their hearts, they are so accustomed to the both of us being with them. But, they are a joy, even though they can aggravate the heck out of us as times also. Just like 2 kids for sure!


My “projects” are many. It seems I always have my “fingers” in a different pie. I recently became an “Active Volunteer” for a non-profit Foundation that is trying to help bring awareness to Autoimmune Arthritic Illnesses. I just “graduated” from a several month class learning about the Foundation, and all they are accomplishing. It is truly an amazing story. The “founder” began about 4 years ago, after she was diagnosed with Rheumatoid Arthritis. She wanted to make a difference and she has truly already done “miracles” through what started out as a “Buckle Me Up Movement” and a bracelet she made with a “belt buckle” at her apartment in San Francisco. From there it has grown to her and 4 “co-founders”, became an official non-profit foundation, and is about 35 volunteers strong and growing quickly. She has honestly accomplished things in 4 short years that many would never accomplish in a life time. And ALL of us have one or more Autoimmune Arthritic Illnesses. The Foundation is International Foundation for Autoimmune Arthritis. I would love it if you have a moment to take a look at their website. Even it does not really tell just how incredible this truly is and how many lives she and all of us as a team shall touch! You can visit the website at: 
http://www.ifautoimmunearthritis.org  …
Also, I will be doing some blogging on their own blog, which is called “Systemically Connected”. Plus my own personal blog, “Gaze Thru Pain - Lupus/RA & This Foggy Brain” is the name of it, and the URL to my blog is :  
http://rhiannonsrisetodreamstate.blogspot.com 
I have to laugh, of course, as I say every year; I’m not going to make my “Annual Christmas Letter” so long! Of course it is always long, and probably longer than usual. I find as I write, there is lots more that went on during the year, than I think did. 

My hope… Our Hope is the you and your families are healthy, happy, and enjoying one another throughout the holidays. May you find peace, joy, and most of all love throughout 2014 and beyond. Know that we think of you often; even though we aren’t close physically, in our hearts and spirit we are always right there.


Much Love, Merry Christmas and A 2014 that shall be Wonderful!  Rhia,Jim, Tazz, Bubba… and All of Our Family!!!! 

Wednesday, November 27, 2013

Thanks for, A Few Thoughts, & To Your and Yours....

I'm just "stringing" a couple of posts together from FB right now. As you shall see below fingers crossed my new computer is coming today. But, as you know that is an ALL DAY affair setting it up, getting my desk back in order, transferring my files onto it from the external drive and hoping I have not lost anything.... So, I shall post a couple of things I wrote in FB the past two days, and in the morning I hope to be ready to "shine" and "scream"... well my computer to "scream" with speed, LOL, not me!!!!

So here are the posts, and I wish you a wondrous holiday... be safe and hopefully as I said in one of these "flare and as pain-free" as possible... Rhia



I just thought of one thing that I was reminded of with it being Thanksgiving Week! Some of us will be with family, friends, some home with our pets. Some of us will be right here with out online friends and family. I am Thankful for the fact that I am so far NOT lying in the hospital as I was when I was 15. I spend 7 days during Thanksgiving holidays in High School having my right knee completely cut open and the meniscus taken out. I was in traction with my leg in a huge heavy cast that was from my bed as far as it could come up in my leg to my toes. I was in that thing 3 MONTHS! Then spend a very long time getting my muscles back to where they did not look like toothpicks. So, that day, my Dad, bless his soul, came to Dallas, and forgo his turkey dinner with Mom and all the family so I wouldn't be alone while I ate mine from that hospital bed. Right now as that memory floods over me, that was THE BEST Thanksgiving of my life! And right now I miss my Dad more than anyone could ever know. He would be 91 if he were still here with us.... May all of you find that one thing you are so Thankful for.... Be Blessed, Be Safe, and Know you are LOVED! 


I've had a couple of really BUMMED days! My computer that was supposed to be here yesterday didn't make it. FEDX had not updated anything on their site until later yesterday evening. So, all day I had no clue even where it was in the delivery. It left Sacramento on Friday, and after that all it said was it was to be delivered on the 26th. I am already SO aggravated with this old laptop. I just can't do much of anything on it. It is SO SLOW, it is worse that "dial up" days I think! So, that had really thrown my schedule off. I wanted to get Thanksgiving "Cards" online out, but I have all of my cards for Xmas to make out. Plus I have NOT even BEGAN my annual Christmas Letter. I have been sending a letter in with out Xmas cards now for years. I made it a tradition a long time ago. I don't believe I've missed very many.  But I don't really even have any "software" on this old thing to do it on. We wiped this drive fairly clean and began using this computer for our music. We had Garage Band on it, and did our clips, and all of our recording and so forth on here. Then Jim can bring it in and send it to his computer where he can actually put it all together for a song. So, things like "pages"(which is like Word) and so on have been off of here for a long time. And the music files have made it very slow, but we don't want to lose any of those. Thus, we cleaned everything off we could, and set this one up temporarily for me until mine can get here. FINALLY fairly late in the evening, yesterday, FEDEX, updated their website. My computer is in HUTCHINS!!!! (YEAH!!!) So, that means it is just down the "street" from me well almost, but it has arrived at the local hub and should be out for delivery TODAY!!!! Thank Goodness! I got up yesterday and was just not about to sit at this thing and be able to not do a thing productive! So, I made my "annual" fruitcake, did some cleaning, and watched some Xmas movies last night with my two puppies... Now if the computer gets here today, then that means all day getting it set up, my desk back in order and things have way back to whatever normal is around here. My thoughts and prayers are with ALL of YOU! 

 Please be safe! I realize many may be traveling or have family traveling and weather is very bad in many places around the nation. Enjoy family and friends, have a very warm, loving and hopefully flare and pain free as much as possible holiday! And Eat a little bit of everything!!!!! We are taking Mom over to Waxahachie tomorrow to a huge buffet over there for dinner (more like brunch).  So we don't have far to travel and right now our weather as far as traveling right here is good. May all of you be blessed and overflowing with all of the things we should be thankful of. Later in the day, whenever FEDEX delivers my new computer, (I think I am still in shock) LOL!!! I'll probably be away for a bit while we set it up. But I will be "screaming" with speed when the new one is here and ready!!! WOOOOHOOOO!! I can finally catch up hopefully! 



Saturday, April 18, 2009

These incidences are beginning to be Epidemic it seems.

This issue of contaminated medical equipment and reusing equipment that is supposed to be thrown completely away has become an all out epidemic lately. From the latest, which is this one in South Dakota, which potentially put over 5,000 people in possible jeopardy of contracting HIV, Hepatitis and any other blood borne diseases, to VA hospitals, clinics in Vegas, just to name a few. Our nation is NOT some "3rd world" country, that is so poor that hospitals and clinics need to save instruments. Further more, even if it is a piece that is re-used, what ever happened to complete and thorough sanitation and the autoclave of them?

After personally undergoing more than 10 surgeries and procedures over the past two years, this terrifies me, and I am sure it terrifies others also. We go in with confidence that the hospital or clinic we visit, along with our doctors, nurses, and other staff that care for us should be using sterilized EVERYTHING! What are we going to do? Go into the operating room before surgery and check to see if all of the equipment is either disposable or clean? We have enough worry on our plates anytime we go in for a procedure or visit the doctor when some type of invasive tests will go on, about the risks, and our health, without having to add more stress on patients and their families that equipment is contaminated. Between this, and all of the hundreds of food, toys, animal food, and other things that continue to pile up with diseases, or possibly deadly additives, and now this every day announcement of yet another large group of people exposed to blood borne diseases, it makes me wonder what the heck the FDA is doing? What is going on with the board that certifies these health care places? I also in the back of my mind wonder if all of this is not just a coincidence, or is it possibly some type of "attack" on us as citizens of the US? I realize that may sound far fetched, but with these happenings being almost epidemic in proportion, I really wonder about a link to terrorism on our own soil again.

Here is a link to the latest :

http://www.cnn.com/2009/HEALTH/04/17/south.dakota.urology.infection/index.html?eref=rss_health

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