Showing posts with label autoimmune disorders. Show all posts
Showing posts with label autoimmune disorders. Show all posts

Thursday, August 6, 2015

Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping

Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...

Sunday, April 19, 2015

Stress Awareness Month - WEGO Health #HAWMC Writer's Challenge April 19th 2015

Definitely a great question for ALL of us that have to contend with a stressed filled, everywhere you look and feel world! Daily stress producing items are all around us. Whether you are "chronically ill or in chronic pain" or not, the news and medical world tells us that our daily stress levels are off the charts. This also means that stress effects us in so many different ways, especially when it comes to your physical and mental health.

Then you take all of that into consideration, jobs, families, travel, homes, cars, kids, and just what we see in the news daily, is enough to cause us an insurmountable bunch of stress. We have known for years that stress contributes to heart problems, it definitely effects our immune systems, allowing things that normally not make us ill, to sometimes makes us more ill than we think.

Now let's add in doctors visits, 15 or more medications a day, feeling overwhelmed already, yet due to chronic illness and the pain that comes along with it, the stress levels can be way over the top of the glass, and pouring down all around us in a puddle. Just having to deal with a drive to a doctor in Dallas, maybe two in a weeks time. Making sure all of my medications are filled properly, and with me so I don't miss any. Not feeling well some days, either with some type of "flare"; whether Rheumatoid Arthritis, Lupus, Sjogren's, and the list continues. Add those onto trying to keep a job, do errands, take care of a home, a yard, a car, buy groceries and prepare meals, do laundry, and all of the 1001 things that can pop up at any moment, to distract us from what else we are doing. Then our bodies all too often "revolt". So, now I am dealing with a huge amount of fatigue, severe headaches, my hips and lower back hurting, perhaps like last week for me, having the procedure done on Thursday - even though a "good procedure" to hopefully help reduce the horrid pain in my lower back, hips and legs, was still "stress". So I get up on Friday, with bright pink cheeks, feeling like a train had run over me, seeing everything piling up I need to do, and guess what, here is a flare. I would "assume" a Lupus flare, due to the pink hot cheeks and nose. That all too familiar "Lupus "The Wolf" Mask" we get when one of those comes on

So, I've spent over a week at doctors offices, having that procedure done, then coming home to know I am behind on everything. Now I feel lousy, the weather brings on a new set of stress on it own, and I now have a very low potassium situation they discovered last week when I had the Transforminal Epidural Steroid Injection done in my lumbar spine. My potassium was at an "dangerous" low. Most of the time at what mine was, and they even checked it twice, I probably should be getting IV Potassium to try and get it back up a bit, then follow up with pills. But, I didn't hear from my PCP even after calling at 9:00 A< Friday. So, I followed up with my Cardiologist, who immediately called in a script, told me to take two of them for two days, then one a day, and come in on next Friday so they can check the levels again.

Now, after all that being said, "How do I, did I, deal with all of the stress"? My first way to "deal" with stress is "listing" and writing down, what is "MOST" important to get done quickly, and what may be able to wait a day or two? That helps me a great deal, to literally "write down" a list, and prioritize things. Then I take stock in how I feel mentally and physically. If I am feeling very lousy, then I know I need to do absolutely what has to be done, and save others for later, when I feel better.

From there, I allow "time for me". Even though my to do list might be long, I still need to be able to either go outside, and do my walking. I enjoy baking. So, for me going into the kitchen and making a pie, cake, cookies, or whatever I feel like I might enjoy baking, I do that. There are days, that I may have to do one or two things, then sit down at the computer and write, or take an hour to watch a movie with my two pups. I also very often find if I go over to my Mom's, and just spend some times away, where I can talk, and "gripe" if I want to, Being able to express my stress is critical. If I can't write it down, or say it, or find some type of avenue to be able to "purge" some of the bad stress, then I really find myself unable to get much of anything done. I am too wrapped up in what I CAN'T, thus what I can does not come to me, when I don't just take that walk, talk to my Mom, write on my book, or post on my blog. Summer as I had mentioned in another blog post earlier in the week, tends to help. I can open up my home, and let the fresh air in, get some light streaming in, and I have a "renewed" feeling, that tends to be a great deal stress free.

Being ill with so many of these diseases, syndromes, and such do add a HUGE amount of stress in my life, but my husband, Mom, and others can "feel" that tension in the air. So, between all of us we try to keep me in check with stress. It may mean a day trip to Oklahoma and the Casino. Which in saying that, we are LONG overdue to go. It has been several months, possibly about 4 or more months since Mom and I made that 2 hour journey into "freedom" for a few hours at least.

Just a day trip away from it all, is an incredible way for me to get back to the matters at hand daily, and lead my body and brain into a new perspective.

Writing has always, and will always be one of my biggest ways, that I can "purge" out the stress, remain half sane hopefully, and try to carry on up that "mountain" always reaching out to attain a goal.




Monday, January 26, 2015

New Year - New Revelations - New "lease" on Life, still all wrapped up in an Autoimmune Illness World and How to make dreams come true...

I have under my own terms "swore off" procrastinating about the writing of my 3rd and in fact 4th book. I had a very good email come in this morning from "Create A Space" that had an article about how to "put off" the writing of a book. We can make up a thousand and one excuses, especially if you a chronically ill, or like myself chronically ill, dealing with some symptoms that can really make daily life a challenge. To top that off, now I am kind of the "whole deal" of being a care taker for myself and for Jim. Even though within a short couple of months it will be a year since that fateful car accident, that sent me reeling through a "time space" that still I am not so sure of how I got through it all.

Honestly, I am not sure I truly have resolved all of it in my own head, heart, and soul. I question my own illnesses, and as of late, have developed more symptoms, that truly have started to concern me. I am not so sure that they are from the autoimmune illnesses, I am already diagnosed with. I have this "gut" feeling... that my "gut" feeling (n pun intended), along with the nausea, the extreme fatigue, all of the lower back pain, leg pain, of which even woke up me at 4 am this morning, and sent me rushing to get some medication, and then even though I really wanted to get up early, I remained on my sofa bed until about 7:40 a.m. That had not been my normal behavior for the many months that followed Jim's car accident. I rarely slept. Some days I wished I could go "find" those nights and use them to further the writing of my books.

I am trying to properly place myself where I desperately need to be in order to get this book written by the end of the year. Yet, if I don't heed the advice that I read just this morning by a group of very good writers, I will continue to "put off" the book and never get it written.

So, over the next few months, I will definitely keep my blog "fresh". I won't allow myself not to publish things and write events and so forth here. You, my audience is extremely important to me. So, the last thing I want to do is lose you due to me not posting and keeping current information here, because eventually my heart tells me some of you will be the "audience" that helps my 3rd book to take off enough that I can give a good portion of those proceeds to a couple of very important charity/non-profit organizations that I feel are crucial to the findings about everything autoimmune. From the very beginnings, to the fight going on admist researchers, grant money, patient and clinical trials, standing up to our Congress both state and national to get them involved in such a crucial matter to all of us here in the USA, and the incredible work of those in many of these non-profits who are no longer just "charity" organizations.

They are SO MUCH MORE than "charity" types of businesses. They are the very operatives that go in "fighting" for us as patients, as caretakers, as family members dealing with these illnesses, and to get the funding needed to battle, and win the raging war over how the ruthless diseases destroy so many lives. Whether through loss of jobs, family problems, endless medication and doctor bills, fighting with insurance companies, pharmacies, and the list is endless of the daily ordeals we go through to try and "get well"... or at least feel better, find remission, and a state of "no more disease" to have to contend with.

I promise to do my very best to keep this blog fresh, full of new posts and information while I dig much deeper inside of my own heart, brain and soul to complete this 3rd book. And I know beyond a shadow of a doubt, I WILL accomplish that.


Wednesday, July 30, 2014

Life this week... kind of like "Hell" Week - from Sjogren's, to RA, to not getting to see my Rheumy... to every other appt on the planet...

Talk about nuts! That does not even describe what this week is and it is just Wednesday.... my Rheumatologist appt got postponed until Sept.... he had a schedule mix up and could not be in the office yesterday. I had been sick to my stomach all day and finally had gotten in the shower (my appt was not until 3pm) taken a shower and gotten myself a bit better as far as my stomach, and as I was drying my hair, I could hear Jim on the phone with whom sounded like my Rheumy's office, I could tell, it was going to be cancelled, and I knew then it would be weeks or months before he is in again. Now that he does research, teaches and just sees a few patients, getting to see him takes a feat of God almost to get in to see him. But his office manager told Jim to have me send them an email & he will see if there is something he can do as far as medication etc before the first part of September until he can see me. So, then I DO HAVE A PIN HOLE pulled in between a molar and my Sinus passage. That is why water pours out of my nose when I try to gargle or anytime I have some water in my mouth and I bend my head over. Plus "air" swishes out of it, making a really odd noise and talk about drive you nuts. He is trying to allow it to "seal up" on its own if possible. He said that one "socket" is healing a bit slower than the rest, but he hates to "mess" with it. He would rather see if it does seal over by the time my dentures comes in  - about 7 to 10 days it looks like... then if it still has not sealed over, he said he would do a minor procedure to seal it in. Of course it always has to be ME with some WEIRD and strange issue... never fails.... he did another type of "warm wax" impression on Monday. He is doing some special work on my front upper teeth to try and minimize my overbite as much as possible. So, he took that in order to do more fine tuning into the dentures before they are made. I am supposed to get to see them next Tuesday I think on the computer. He was still adjusting on them this week, so he say now it should not be much longer now. Wow, when he just put that wax in there my mouth felt so "full".... I hope the hell I can stand those dentures in there. It seems like my mouth is so much smaller than what they will be like in there. I pray it all comes out okay. This has been a great deal of time, patience, money, and more money.... to just get my teeth in, so this has be RIGHT!! And Work! I am hoping that even though I cannot have a biologic right now, I maybe able to be put on "Xeljanz" in with my MTX, or at least up the MTX a bit until I can get something further done for the RA/Lupus pain, swelling, stiffness... I am having mortal hell with it, and there is no way with me going through all of the mouth stuff that my Rheumy would allow any biologic at this time. Anyway, I am sending him a message today asking him if we could try the upping of the MTX or the Xeljanz or anything right now until I get through with the teeth and any chance of infection. Then we can go back to some type of biologic. Things are nuts here... so if I am not around much, it is just because we have an appt every day this week. Plus I feel like someone ran over me twice and back over me 3 times with a train, plane and automobile today. We are expecting storms anytime and bad ones possibly. By the way my body feel, it should be a damned monsoon.... hope all is well with you and yours.... Hugs. Rhia

Tuesday, July 22, 2014

3rd Time A Charm!! -

 It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.

 

I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs. 


I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia



I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!


Rhia

I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something...  If this is still not making sense, send me an email at rhia@ravishingrhia.com or redstangblonde@yahoo.com and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!

Tuesday, June 3, 2014

WEGO Sharing HUB - Xeljanz ... sponsored by Pfizer.



Information for Rheumatoid Arthritis Patients & Caregivers

(Great Results with Less Side Effects)

If you’re looking for information on Rheumatoid Arthritis, head over to the RA Patient Resources Sharing Hub, sponsored by Pfizer.

There you'll find information about the role inflammation plays in your body, as well as educational videos about RA. You'll also find digital resources that can help you manage your RA. These tips and tools from Pfizer can help support you on your RA journey. Additionally, you will find information about a savings card for a prescription treatment option for RA.



Check out this link to WEGOHEALTH and the latest from Pfizer on Xeljanz:


http://sharinghub.wegohealth.com/ra-patient-resources?utm_campaign=xelj14&utm_source=whcom&utm_medium=web&utm_content=header-link



Friday, May 30, 2014

Life, Lupus, Symptoms, RA, and Coping... (My Own Pretense Portion 1)

(Portion 1) I began this weeks ago. So, I've decided to post it, some at a time, rather than one huge post... Maybe I, can find some "reasoning" for things that I have questioned through my own writing.... so here it is .... the first portion....



Even though the "title" of this only names "4" items, there are SO many more, that if I posted it all in my title would be as long or longer than my blog post.

Rather than bore myself and everyone else with some title, I much prefer to get right into the "meat", heart and soul of writing this. Many of you have followed my "trail" for a rather long time now. Well, before I had a great deal to so the Facebook, or truly decided to delve into the realms of blogging for a good reason.

As with life, and everyone else, I have underwent changes.... changes in illnesses, changes in life, changes in the way I feel about life, what I want to "accomplish" during the rest of my time here, and we ALL have lists and lists... and if you are anything like myself, I have another list to keep up with the lists. Humans are just that, humans. As I began this, my first portion said we all change our minds, we all have things we have to live with, tolerate, long for, debate, are stubborn about, will give in, and some things in our lives , we tend to have a firm stance, and like that tree with the larger trunk, than any other near it, nothing will move it - not until the heavens and Earth someday are moved.

I've gone through SO MANY "adaptations" since my RA/Lupus/
Sjogren's/Raynaud's.... and oh how the list tends to grow along this past 7 to 8 years. Blood work, physicians, specialists, MRI's, CT's, EMG's, NCS... and it seems those tests with the initials also go on forever. You finally come to realize you are thrilled with you type EMG or any one of the other numerous "initials" for tests that someone, everyone knows what you are talking about! Finally you have found somewhere you don't have to try to type out an entire 15 letter word for a diagnosis or test! Boy, though when you reach that place, sometimes it smacks you right back into thinking, damned this is seriously becoming a way of life. When I know as much about the tests (or at least what those initials mean) as the doctor does, or understand all I am reading about in an article online without having to flip back and forth to "Google" a word, you have reached the point of "Face it, You have one or MORE Autoimmune Illnesses"!

So, we put up with the poking, scanning, tiny little needle like electrodes being put into your muscles, injected, directed, and all types of waves going through you... to this place you think, okay, that has to be the "last one". The last test, the last diagnosis, the last new medication, and NOW finally I can go on with my "life" as I had planned it before all of these turns in the road took place. Guess what? Nope! Not yet! Although maybe, you reach just a couple of things, that need a couple of scans, and only 1 new medication for now.

My body feels like it is on its last "leg"... my mind feels like I have thought every thought that have a been thinking seems as if it leaves me with no other thought that would possibly be "different" or of my own.

I feel submerged in a "vat" of vastness, not knowing if I can breathe or not, do I actually "see" something, feeling something, taste or touch an item, hand, piece of fruit, a fork, spoon, or a human? I am just a wanderer now... wondering as I wander about, never knowing from one moment to the next how to think, what to feel, whether I should "act" normal, or sometimes act as crazy as I have felt in the past two months.

I wished I knew more answers to so many questions that I have "backed up" in my mind. There is this place that seems to be over wrought with all kinds of questions, from things about the wreck, to things about my Advocacy and Ambassador in the Arthritis Foundation.... to my own illnesses... my teeth just seeming to fall out of my mouth due to Sjogren's, and the $8,000.00 it takes to get them fixed.

Even with insurance the BEST I can get would be 60 percent of it paid. Yet, that means trips to Dallas, multiple trips... whereas I already have enough trips there due to the Lupus and RA. There are all of these "new" symptoms, yet I have not been able to be given "why" they are here... why am I so terribly weak, why do I find myself more stiff, and feel as if I can't walk very far without falling... why are all of those happening...

Then there are the brain issues, the forgetfulness, the fogginess, the ability not to spell correctly, and the problems typing that I never seemed to have found out as to why... and I fall asleep all the time... I can be having a conversation and I fall asleep.. I try to watch a movie and I fall asleep... I have found myself just standing on the front porch or deep in thought in the yard and I have literally stood there and basically fell asleep standing. It makes no sense... some seem to think it is lack of sleep for me, but I get more sleep now than I have in a very long time. So, I cannot fathom it being a "lack of sleep".






























                                                             

Wednesday, April 2, 2014

World Autoimmune Arthritis Day/Convention - Check out the details below!

Please be sure to Check out WAAD14!!! The Premiere in a World Autoimmune Arthritis Day/Convention! Please see all of the information attached for all of the information! There are 47 hours o NON-Stop information, experts, booths, and so much more... We look forward to Seeing YOU THERE!!!





Registration for World Autoimmune Arthritis Day is now open! We have 47 hours of continuous live action, including chats from Christine Miserandino of ButYouDontLookSick.com, Randy Horwitz, author of Integrative Rheumatology, Arthritis National Research Foundation and one of their top scientists will be talking to YOU about research and MUCH more! 40+ booths from nonprofits around the world, an interactive Day in the Life of an Autoimmune Arthritis Patient experience where you can send Challenges to supporters so they can understand!

Pre-Registration is open NOW for $5 USD and you get THIS bag WHILE SUPPLIES LAST for no cost, just shipped to your front door. Why a bag? Because when you have autoimmune arthritis shoulder bags are helpful to tote groceries, carry items around the house and more. Why pre-register? We need to know how much space to reserve in the Virtual ONLINE Convention.

Learn more, pre-register and we challenge you to invite 5 friends- go learn more at www.WorldAutoimmuneArthritisDay.org!

World Autoimmune Arthritis Day is a 47 hour ONLINE Virtual Convention you can attend from your computer! The virtual doors open at 6am ET/USA May 19 and close 5am ET/USAMay 21st

Sunday, March 9, 2014

(Part 3) My "intuition" was right... it just never ends... I feel as if all my life will be one big ball of a foggy brained, Autoimmune RA/Lupus/Sjƶgren's and who knows what else of a disaster...

Part3 - How many Opinions does it take from who many "Physicians" before you feel at ease? Peering into the Looking Glass of Autoimmune Illnesses, and deciding where to begin.... and where to END? 

Can you put your "health" in the hands of those that are supposed to be "educated", who have been through testing, who have taken a "vow" to  - "Do No Harm?" - and these days what does that small sentence truly mean.... "Do NO Harm"?

Trust... Trust who? Well from what I've experienced over the past 3 to 4 weeks, I am not sure who is the real insane person around? The doctors, the insurance company, me... or whom... but I do know NOTHING is getting better at all.

I called my pain physician's office yesterday. The pain that has decided to plague my body for a 3rd time in about 18 months has reared its ugly head again. I tried to tell him last week, when my medication for the pain pump to be refilled was NOT THERE! It was sitting in some office in Phoenix AZ! So, I go without my "extra boluses" so I do NOT run out over the weekend and the pump start "beeping"... and run out before Monday. I had already been "hurting" worse for days before that. Given the fact that I was NOT given my biologic when it should have been given, then surgery, then not being able to do anything for 6 weeks because of the surgery, then I got sick and was ill for weeks, turned around and low and behold the beginnings of not just ONE flare but TWO! RA and Lupus! Then another 14 days to try to get SOME KIND of BIOLOGIC the insurance WOULD pay for, and then waited for the prior authorization that went to the wrong pharmacy. So, that all had to be redone and sent to the proper place. All the while I knew my body was in the stages of rebelling. I felt it each day getting worse. Worse to the place, that once again I could sit in this floor, scream, cry, and beg... but that would not do a thing, but cause me to hurt worse.

So, after NO call back from my pain doctors office yesterday, I knew something was "wrong"... where his head is, and why after going through ALL he has watched me go through. Knowing my extreme health issues, or supposed to be knowing them, I get a call from his "nurse" who is a jackass anyway. I already had issues with her a couple of months ago over NOT getting my medication called in, before I ran out. Well, today was the day for me to call it in. When she called, I knew something was up. She goes on to tell me, that my doctor is calling me in some.... and he thought it would help with the "inflammation"... Well red flags went up everywhere... so out of my mouth came is it an NSAID? She paused, said wait a moment, and of course came back to say yes, Well, right back at you NO! Now this doctor has been seeing me since 2008, knowing ALL of my issues, and he knows I've had not just ONE heart attack but TWO! That is NOT including the GERD and all of my stomach issues. So, why the hell he became so "weird" about all of a sudden NOT upping my pain meds for a month is beyond my capacity to understand at this moment. After ALL he has watched me go through, and also portions of this beyond my control, their own crap with my medication not being there, thus I had to cut my meds "way back" for like 5 days... I already was in severe pain due to the entire biologic stuff... and now all of a sudden, for no reason, he decided to try to give me an NSAID? Hell, I would BE ON THEM, IF I could! I just looked at the phone as she said, well, I will call your other meds in Monday? What the hell? I am supposed to run out Monday, and they MAIL THEM FROM DALLAS! She knows that she cannot wait until the last moment to do that. OMG, I was ready to explode! Conveniently, he is out of the office "today". mmmmmm, he always is when you "need" something. I am still just blown away by his attitude, and I had even picked up on it, when I was at the office both times. Something at his office seems "off" now too.

What the hell is up with doctors all of a sudden? I've never seen so many weird changes of attitude, of how they treat their long term patients,  and the plethora of "lack of caring"... that I've witnessed in just three weeks.

Honestly, I trust my OWN judgement at this moment. more than I do several of my own physicians. I get the impression that their "realms" of health care have just about flown out the window when it comes to any patients who are on Medicare, Medicaid or a Medicare Advantage Plan. I've said it once, twice, and three times, plus... the government has their fingers so tied into all of it, that doctors cannot possibly do their jobs taking care of patients, all the while either the DEA, FDA, Medical Board, Medicare, Medicaid, other insurance companies, the government as a whole as ALL breathing down their necks.

I believe at last count, I've seen and heard at least 5 or 6 articles about "bad pain medication" in just the past week. Everyday over the course of this week there is yet another "gripe", whine and bitch about "pain medications" and addictions. Let me tell you right now, unless you have walked for ONE DAY, hell ONE HOUR in the severe amount of ever growing pain that myself along with so many of us deal with, you cannot imagine what that feels like, You cannot imagine in any way shape or form, how your entire body feels like it is a hot burning coal of fire.... from the tip top of your head, all the way down into the bottoms of your feet.

Then let's see. You have a job, you need to go to work. You need to take care of your home, your kids, your LIFE! HOW can anyone stand up and "deny" something for someone that they know will IMPROVE their quality of life?

The saddest thing about all of this.... it is just getting worse day by day... you have no where to turn anymore... family gives up, spouses leave, you are in nothing but a place of despair. Where do you go, which direction will lead you to an answer?

NO ONE, and I mean NO ONE should have to SUFFER THIS TYPE OF PAIN! Not one soul, should have to endure the kind of brain rattling, aching, like someone took a baseball bat and beat you from your toes to your head type of pain.

Our bodies are marvelous machines... when they are well oiled, taken care of , don't get knocked out of alignment, they can do some magnificent things. Yet, you allow your body to  get run down, draw upon some strange illness, whether it be a bacteria, a virus, some kind of chain reaction in our nervous systems, or just decides it is just going to run on 4 cylinders instead of 6 or 8, you are in one screwed up mess.

Just as I took a break for a few minutes, I saw an email come in from MedPage. I had been taking their newsletters for a long time, then stopped for awhile. About 2 months ago, as the latest and greatest news kept breaking about this, that and the other, when it comes to the health care industry (should say profession)... industry... yes, just another "brickness" in the wall I fear...

I come across this article. Much of it sums up exactly what I have been trying to portrait through my own words in these (parts... up to 3 now) posts about all of the crap that flies around throughout the entire medical world.

I will post the URL in this when I get my own "fogged" wisdom out of a brain that feels as if it has been drug through the mud... and not much med for sure... Why is it that Medicare in itself had doctors spend BILLIONS of dollars on "electronic systems" that now cause MORE red tape, MORE work, MORE PAPER, more time... and MORE Of everything BUT the ONE thing doctors are to do. spend TIME with their PATIENTS! In the "age of technology", when "phone" messages fly through the air, and not over a wire... when you can connect your computer to the internet and never plug in a wire, does it NOW take more papers than ever to see a doctor? I've been seeing my same pain specialist now for at least 6 years, for all of the exact things... yet I had to "fill out" an entire new set of paperwork that was about 10 pages of crap, they already knew and had on me. It was a waste of time, money, and they probably never looked at it what so ever. I would be willing to bet it went right into the recycle bin. Now my husband is a first time patient, and he sees the doctor for the first time, I can see "filling out" forms. But, my gosh, about 10 pages of that was just "stuff" to either initial or sign. And it is just exactly what the article I read talks about. MORE of a doctors and the professionals time spent screwing around SIGNING CRAP that means nothing to a patients level of care! When your physician has to spend more time looking down at a "whatever kind of lap tablet" that thing is they carry around now typing on, rather than examining you the patient, listening to you the patient, checking your heart, lungs, looking over your skin, everything else on you.... but honestly, I have watched my doctors lately squirm when they see me coming with my yellow or hot pink piece of paper they know is "my list", I can see them wanting to jump out of the window and run. Mine know I am GOING to have questions that I fully intend on getting answered before they leave that room. No more of going "unprepared". When I am off to the doctor, especially for a follow up that I've had the appointment for now for months, or I am seeing a new specialist for new symptoms, I will have them in that office until I feel I am satisfied with the answers. Yet, I've watched my own PCP one time set there and talk for an hour with me, then the next he stands with his hand on the door knob just waiting to catch a moment, that he can quickly escape. I realize he has other patients. I also know he does, thus I will not "over step" my grounds. But, I feel I deserve my "allotted" time. What they do though, is "allot" that same amount of time to about 6 patients, then that is there fault. If they overbook, just like the airlines do, then someone is going to have to either wait, or be hurried through. Normally, I find I am either the one being hurried through, OR I am the very LAST one called in for that "time slot" for sure. And what about this new thing of bringing you back to spend another 2 hours in that damned ice box cold exam room, when you could be sitting at least out in waiting area, catching everyone's germs as they come in! Nothing burns me up than for me to walk in, and 3 or 4 people come in behind me, all stating their appointments are scheduled the same time as mine! Hell, mine can't even see me and make a decent diagnosis and treatment plan alone with just me, much less 4 or 5 other "sick" people in the mix. Then of course here comes the nurse, asks all the questions, half way gets down what you say, takes your vitals, and says "okay" I will get all of this logged in and he/she will be in within a bit.... yeah right.... a bit my butt... more like 2 plus hours later, you have worn the seat completely out of your pants,  you have stretched, walked, watched the same pictures of their kids go by in a digital frame that have been there for years, looked out the window, listened to their elevator music/radio and all of the whispering, crying, hollering, and just about the time you are ready to explode, here they are "cordially" explaining about the emergency, and being "sorry" for being late... yeah right where the hell is my $25.00 you would charge me for being late? Some how that shoe never quite fits over on your foot, but it certainly does theirs.

I am so totally, utterly, completely, within, without, absolutely SICK AND TIRED... OF THE ENTIRE MEDICAL SCENE, that I could literally jump off this house, land on my two damned hurting legs... and I probably would feel better than I do right now!
What makes this even worse for me, is that this time the "brain fog", is more like a brain super mud... no transparency, no light, no even haze, just a thick mass of, I am not sure what I am saying or meaning from one moment to the next. I am catching myself repeating things in my postings, emails, even to what I say to Jim and Mom. Honestly, I cannot remember that I did just "write that" in the last post. Or that I told Mom that on the phone yesterday. I can't remember I saw this movie a month ago, or there would be no way for me to ever get home without a list. Whether I need 5 things or 50, nothing seems to "stick". All just seems to be sucked in a black, muddy sludge... along with all of the intense physical pain that surrounds me, and engulfs me.

I know people must be just thinking "oh, she is just having a bad few days", I am not one to "repeat" myself or forget what I just said. I do at times, but this is so much different...

continuing now on Sunday the 9th of March

I've tried to decide exactly how I want to handle the several glaring issues staring me down this next couple of weeks. I've  thought about everything from getting my teeth fixed, and how the heck I was going to get into that specialist in Dallas BEFORE they all fall completely out! This is NO LIE! I put the coffee on at 2:00 am this morning... yes the clocks rolled back and rather sleep you would think, but nope not me, I am wide awake. I happen to hear some of the neighbors coming home, opening car doors and slamming them, and their music just a blaring... yet my household, other than myself knew nothing. Jim has been "ill" again with flu like symptoms, so I decided or we decided I did not need to be exposed anymore than I had to. So I've been disinfecting everything. So, I went to take yet another BC powder, and I always have to have a small bite of something after I take one. they are quite unpleasant especially if any of it does not go down with the first drink. So, I grabbed a tiny piece of dark chocolate that was sitting there in the fridge. Now of course it is cold so it is a bit harder than not being out for awhile. But, just as I put it in my mouth and began to chew down on it, I felt something hard in my mouth. Well, it was not that bite of chocolate, because nothing was in it. So, I go "digging" around and find an entire back piece of one of my top back jaw teeth out. About the time the coffee is ready, I pour a cup and still something felt "odd" about that time I feel another piece of something hard, like a little sliver of some kind. Yes, sir it was another piece of tooth, BUT it came from a different tooth on the other  side of my mouth. Then I got to my computer, went to take one of my medications, and again I feel something "hard" in my mouth (not the pill) ... and again for a 3rd time off of another tooth, a chunk fell out! 
So, here I am at 2:30 am standing in my kitchen, literally watching my teeth fall apart. That was NOT the way I intended on spending my Early Sunday Morning. In fact, I had the intention last evening of possibly going to a new church this morning, depending on how I felt. This severe pain in my legs has just about sent me to the nut house, honestly. My head is not on straight, the brain fog is just beyond belief, and I am so utterly disappointed with the entire world right now, I am not sure where to even begin, 
My story sounds like child's play compared to some I realize. But, I tell you when you have been through what I've dealt with in the past 8 weeks or so, and don't forget it is just now a bit over 6 weeks since I had double hernia surgery. In fact this is really the 1st weekend I've been able to feel like I can do some things I had not been able to yet. I did vacuum the house, and I've done some bending over and picking things up out of the yard, trimming back some of my bushes that will hopefully come out soon... I still have not been on the exercise bike yet but that is due to the leg pain. I fear that my legs may hurt worse. With the entire situation with my pain doctor and his witch of a nurse, I assuredly do not want to get to hurting any worse if I can help it. 
I have SO MUCH I NEED  & MUST get done, or I won't be able to make the trip to DC. That will just break my heart. I've even thought about shortening the trip for myself, and coming home Friday. then let Jim stay until Sunday. That way the dogs only have to be watched after on Thursday and Friday until I get home whenever, and then Jim would fly in on Sunday and I'd have to go and pick him up. I am just not sure I can go yet at all, not in the shape I am in at this moment. But, it could be I would be able to at least make the Fly In... get to meet his Mom, and then they could have a really good visit, and catch up. It's been over 10 years since they have seen each other in person. So, it is totally important for him to try and go. Of course he also has so many issues with health, mainly severe arm, neck and back pain, I am not sure he will go and can withstand the trip either. 
His idea is "well I hurt if I am at home or in DC... well that is true but when you are at home... you can have your own "nervous breakdowns" without someone else knowing it. 

There is a great deal more I want to say here; so this post may have a 4th portion to it. 


I am not sure if I will do it that way, or just call this one "finished".... and begin anew ... probably begin new. Due to "perspectives" I realize that not everyone will "agree" or "disagree" with me on some things I've said, and believe.... 


But, I do believe that "WE" all of us .... talking now about the Chronically Ill Patients,  with illnesses that take away all that is good in our lives, and turn us inside out and upside down... Autoimmune Arthritis... and all of the other Autoimmune Illnesses... along with Chronic Pain, people suffering from FM (which I still believe is an autoimmune illness)... Chronic Fatigue Syndrome... and the other things like my friend just discovered... she has "Chiari"... where a portion of her brain stem is literally gone down into her spinal canal and is being "crushed"! It has taken all of her life of fussing, crying begging, screaming, tests after tests, and in a "test" for something else, they "found" this syndrome she was born with. 

due to the nature of this malformation... and the unbelievable story that it has taken over (I think she is about 50 years old, but she looks like she is 35) :):) for them to find this... she also has Lupus...  of which she is being treated for... Here is a link that explains this malformation... she does not know yet if she faces surgery or what... but by gosh anyone would be totally freaked out if they got this diagnosis after all these years.

http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm


Please comment.... I want to hear from YOU!!!!


Thursday, January 16, 2014

IFAA Blog Leader "Rhia Steele" & Her Featured Interview - I Would LOVE to See you there!

I am so totally amazed and thrilled at the turnout "WE", meaning IFAA has had on introducing all of our Blog Leaders with Interviews over the past couple of weeks! We still have many more to do, and my hopes are is that you will stop in, say hello, learn some wonderful things about these ladies, their own personal stories, and how they began blogging for "Autoimmune Arthritis Illnesses" of one kind or another! I have learned a great deal about these illnesses, along with the wonderful bloggers themselves. They come from all over the nation, all walks of life, some even "caretakers" for their own children; yet one thing in common, these women blog to help get Autoimmune Arthritic Illnesses information out there, so we can do more research, find educate and aggressive physicians quickly, who know and understand these life altering illnesses. We are wanting to CHANGE that on the average of 4.7 YEARS before many get properly diagnosed!

So, I hope you shall stop by on the (19th, which is the coming Sunday) - this maybe on Monday evening but I will give you a definite day (Whether Sunday or Monday) later in the week!

Introducing! - "Systemically Connected" the Official Blog for the International Foundation for Autoimmune Arthritis' Blog Leader - Rhia Steele!!!!


IFAA's Facebook Page" https:www.facebook.com/IFAutoimmuneArthritis
Now if she looks "familiar" (which I hope so) I do so hope you will drop by IFAA's Facebook page and say Hello!

I am more than honored to be a Blog Leader and an Active Volunteer for the International Foundation for Autoimmune Arthritis! Plus I am even more honored to be a "Guest" Blogger on the 19th!

Saturday, January 4, 2014

WEGO Health Activists -- You can STILL ENDORSE Nominee's Until January 31st!

I did not realize you can still go into WEGO Health and "ENDORSE" those that have been chose as "NOMINEES!!!! I was not aware of it until early this morning, so I did want to let everyone know you still have a "voice" in the 14 categories of awards to give your favorite Health Advocates a "Thumbs Up"!!!!!

My link is:
    https://awards.wegohealth.com/nominees/rhia-s-autoimmune-arthritic-systemic-life-1998

http://www.wegohealth.com





Now, of course I would LOVE YOUR "Endorsement" for "Best in Show - Blog", but I wanted all the Nominee's to have a chance to be endorsed!

Friday, January 3, 2014

Hope to be "Hopping" for All Things Autoimmune Arthritic for 2014!!!


Time!!!  Time!!!! TIME!!! To Make Things happen in the World of Autoimmune Arthritic Illnesses and for all of the things I so believe in!



Wow! Yes, I say, "WOW"!!! First of all it is just almost impossible that 2013 has "flown the coop" and brought in a brand new year! I am always saying that it just seems like life is flying by too quickly! I blame it on everything from "getting older", to "being slower", to "wearing out earlier than I used to before I finish something", to I honestly think that "time has began to slow down"!

In all honesty, I feel it is ALL of those above and then some. Age as I have found out does several things to you. Most of us it does much more than we even want to admit to. Yet, I am talking more about what it does to our "time". Let's face it, I am not sure about you, but, I do KNOW I am "slower" at getting some things done. It takes me twice as long to get dressed and ready to go somewhere. Usually it is more when I am "dressing" to go some place special. Such as to the Casino, out to dinner, a movie, or anything "special". From the time it takes me for a shower, then to dry my hair, make up my mind "what to wear", and probably change my mind at least 3 times, to makeup, shoes, and the jewelry. Now I must say, that "men" in general have it quite a bit less to do, in order to go somewhere, even if it is a special occasion. Their concerns usually are not "what shirt", or what pants to wear. Men never have to wonder, well does this chain go with this belt, and you know the story.  One thing for being male, is that in the normal sense of things, you guys have it much simpler as far as clothing and going out somewhere.

Then it is cleaning my home, doing laundry, and everything that entails. It has not been that long ago, I could on a Saturday morning, clean my ENTIRE house, and I mean top to bottom, dress, go the the market, and pick up everything else I needed to do or errands to run. I was home before I knew it, had that all put away, out to the yard where I could mow, and have all of my lawn looking great by mid-afternoon. When I was taking college classes at night and working, I could then sit down, do my "homework" which was usually 2 to 3 hours at least to complete, and by then either be cooking dinner or usually headed for the shower, to get ready to go out dancing, to dinner, friends, or whatever our plans were for the Saturday night. Now this was all done in the SAME SATURDAY! Stay out until midnight, sometimes catch a "early breakfast", go home, maybe sleep or rest a few hours, and it was off again, with either errands, to church, out to exercise, or whatever that Sunday afternoon brought. Then it was late Sunday, time to get everyone ready for the week that followed, and off we were on Monday mornings, kids to school, me to work usually at least a 20 mile one way drive, classes at night at least 3 nights a week, and that was in between everything else that was happening with the kids.

Honestly, I am already exhausted just typing that paragraph, much less thinking about "how the heck" did I GET IT ALL DONE??? I did, so thus "age" does have to be a factor. What I have also noticed, it is not just "me" that is slower, it seems we have "more to do" than before. I don't recall having to spend as much time at the market, as I do now. Between coupons, looking for the best deals, and just all of the lists of things to do, it took time. But, I also washed my car every Saturday, went shopping sometimes, other than house hold items, and still it seems "time" was more prevalent then.

Now I think "we" as a "society" have put WAY too much emphasis on "stuff" that takes up our time, rather than allowing "us" to use our time more wisely. You would also think with this day and age of computers, knowledge at our fingertips, being able to pay bills from home, buy from home, you practically NEVER have to LEAVE HOME if you have a way to get your market to deliver! Yet, in the scheme of things, I see that COMPUTERS can often be the "demise" of time. What happens when you are "checking out" and the "computer" goes down??? Well, there is no longer a way for most places of business to check you out "manually". Some of the checkers would not even be able to figure the sales tax, or heck give the correct change! Lord forbid, them have to "key" anything into a calculator and add it up! I know you have seen the same thing all too much. Certain things in this age of fast moving technology has made certain things extremely fast. But, "faster" isn't always "better".

Then we are stressed out it seems all the times. I feel (and I know I am chronically ill) that so many of us spend more time in the doctor's offices than we ever done. I used to never be in the doctor's office every month! Even my kids, they were not ill all the time. If they had a runny nose, or an ear ache, they took over the counter medications, rested a day, and went on their way. Now, each time we take a breath, they have a new medication for us to try.

We are bombarded with OVERLOAD, when it comes to our senses!!! We are shown so many THINGS, that we MUST have, or life would just not be worth it without them. I've "pared" down some of the "stuff" over the years that is just that.... stuff! Stuff that takes more time to dust, to find a place for, to throw away once it has sat for years and collected dust. I did not NEED an ENTIRE walk in CLOSET FULL OF SHOES! I love shoes; always have! When I worked, I had some nice shoes, and clothes of course. BUT, I did NOT need to buy a new dress, blouse, skirt, and shoes every time there was a "sale". That is another thing what is up with this SALE stuff???

By the time Summer was winding down a bit, and it was "school" clothes time and supplies, there are the Halloween decorations! This is in August! Well, as they push those out the door, here comes Thanksgiving, which is basically skipped over and Christmas decor comes out the first part of November, if not earlier. And just this week, as I watched in total amazement, our stores here locally, were putting VALENTINE candy out BY THE after CHRISTMAS sale, the DAY AFTER Christmas!  Now unless I am mistaken they "missed" New Years there; plus Valentine's is in "mid-February"!!! I know because my birthday is the 15th of February! Well you can bet, Easter, Memorial Day, and St. Patty's will be all rolled up and tossed out before "spring" has sprung!!!

So, yes, my chronic "illnesses" and my age, have made me slower. I admit it all the time. I no longer can keep up the schedule I used to. And frankly, I don't want to. Yet, Lord where is there any "spare" down time now? My kids are grown and gone, it is just myself, Jim and the two dogs, I am home, he works from home, our house is tiny, we can't possibly eat that much, and for the life of me, I can't figure out where time goes.

I am up at 3am, and by 10am, I feel like nothing has been accomplished! My brain fog does not help, I do have to help Mom quite a bit, and we do live in a much "faster" paced world than just 15 years ago.

We are SPOILED to IMMEDIATE GRATIFICATION!!! Fast food, drive thru pharmacies, and doctors in some places, faster cars, television without commercials, you name it, we want it, THEN!!! Buy a physical book!??? Heck, read it then on your Kindle, I-Pad, phone... I could take a week and talk about all of those things... but you already get the picture, which also I would make right here, "looking at you" from my computer!


So, this year, it WILL BE a BUSY 2014! I have made "more" obligations, but those that I have made, will be ones that COUNT for something.

I am now officially an "Active Volunteer" for the IFAA. I plan to help out as much as the Founder and Co-Founders will allow me. I plan on blogging for Activism and for Advocacy! Not only on my personal blog here, BUT on the International Foundations of Autoimmune Arthritis Blog, "Systemically Connected", which I am already a "Blog Leader" on! I also plan on doing some things in the Health Activism realms for WEGO Health. I am "nominated" for a "Blog" award, which I am still so tickled about, along with being asked to be on the "Judges Panel" for the WEGO Awards, which will be in ceremony this March! Of course, then there is also my "book"! My 3rd book! I have not "forgotten" what so ever. In fact I am more than EVER KEYED up and looking forward to having that "puppy" ready to be published by the end of 2014! Now, if you are wondering how the "hell" "she plans", on doing all of this, ah, great question!

My plans are to use my "time" more wisely. The "time" when I am feeling like doing all of these things above, plus play some keyboard, maybe even "bang" around on my drums, after I get over this stupid hernia surgery in a week!

I HOPE that all of my "Autoimmune Arthritic Illnesses" stay at bay... in other words I hope that the "Wolf" stays the heck away from my door this year, along with the others like RA, Sjogren's and what all that focuses on.

I am a "schedule" and list maker. I make lists , for the lists, when I do lists! Yet, rather than trying to "force" myself into more, I plan on trying to encourage myself to handle things much more efficiently. Now, don't get me wrong, I am frugal when it comes to how I spend my time. But, I want what time I spend to be in the right places, for the right things.

My health first (or try to of course), my husband, Mom, and family, my home, errands, and all that goes along with those things, and then my plans are to put much MORE TIME into the THINGS I have so wanted to do and NOW I HAVE THE OPPORTUNITY! Get my "Health Advocacy, Health Activism shoes on, put my head into the "real" meat of the autoimmune arthritic issues, do some great blogging, do some very meaningful work for the IFAA, WEGO and for all of those out there that deserve to have better information.  and one add to this list!!!

WAAD14!!!!! World Autoimmune Arthritis 14!!!! Be sure to keep watching, for that is going to be one monumental event!!!

And then never shall I forget, my book. I have it probably "written" several times over. My issue is trying to put it into some type of "interesting" and "catching" way a order goes, so you, the public will WANT TO READ IT!!! IT DOES MYSELF and No one ELSE a bit of good, if they do not pick it up and say "WOW!" She really has some great things to say.... ;)

So, for now I close and I will call this my 1st "Initial" Post for 2014!!!

I hope to "SEE" each of you making comments, suggestions, asking questions, and helping me to help you!!!!


                                                                              

Monday, December 30, 2013

I am SO TOTALLY Honored! WEGO Health Awards Nominee & I am invited to be a Judge also!!!

UPDATE!!!!!!!! for Nominee and Endorsements ON THE WEGO HEALTH ACTIVIST AWARDS! DECEMBER 31ST 2013 THE DEADLINE!



Here is my "Profile" on WEGO Health Activist Awards for "Best in Show - My Blog!" Today, December 31st, is the LAST day for nominations and you can also if you like "endorse" me on my profile! This is just a huge honor for me, and I hope to make this one more step to helping ALL of you, out there, the others suffering from these horrendous illneses!




Talk about an incredible way to begin the New Year!!!! I've been nominated to receive a WEGO Health Activist Award & last week I was also INVITED to be a Judge in the panel!! I could not say about the judging part, since I was not sure I could. But, today I did get the great news!!! I will post more about this later this evening or tomorrow morning bright and early!!! Do remember if you wish to nominate someone December 31st the nominations close!!

By the way, I got nominated for my "Blog!!!!"

I am so very grateful to ALL of you for the support and well wishes you give to me!!! As I said on FB, these past few months have been a bit rocky in many ways. So, these are just so amazing to me....

Rhia







Saturday, November 30, 2013

Have A "Game" Plan?!! IFAA Does! Rocking Autoimmune Illinesses Right Out of the Stadium!!!!


IFAA ready to kick Autoimmune Arthritic Illnesses right out of the door!





International Foundation For Autoimmune Arthritis - Standing On Your Side of the Field!

This is one of the most incredible non-profits I've ever seen! Although "small" right now, they can just about outdo any of your larger non-profits in the way they gets things going! Another HUGE plus, EVERYONE in the entire non-profit HAS ONE OF THESE AUTOIMMUNE ARTHRITIC ILLNESS OR MORE! So as you ask yourself about things such as earlier detection, earlier doctors, labs, tests, medications and even almost more than that, EARLY EDUCATION AND COMMUNICATION can and will lead to an earlier remission, or even possible a chance of not even having anyone to deal with these illnesses again!!! From their "showing" at the White House, making a huge impact on Congress, to being able to have the ability to find other ways they can change the face of AAI's forever, this group refuses to take "no" for an answer! Please visit the link above and see just how the IFAA has already changed and will continue to change many lives!


Thursday, November 14, 2013

The Latest In Clinical Trials


"A Way To Provide Help and Hope for you and for others with AAI illnesses and other AI diseases also "



I received a new "Clinical Trial" email yesterday with the current list of Clinical trials you can search through to find that some may be a fit for your illnesses, along with where those are located, what they involve, and to see if you may qualify for one.

These can lead to helping not only the patients who get involved but sometimes leads to helping many others because someone stepped up to the "plate" and decided to do one of these.

You can either "join" for free, or just do a "search" with key words, and then the closeness to your location in miles or zip code.

Here is the URL:

http://www.clinicalconnection.com/SearchStudies.aspx


I recently spoke with a gentleman that happened to have Lupus. We met at a meeting, and when I was telling someone about my own experiences with "prednisone" he asked "Do you have Lupus?" Of course I said yes, along with several other autoimmune arthritic illnesses. We got to speak that evening for a long while and it is amazing the people that seem to be put right into your life just when you least expect it. He had been originally from the Houston TX area. He had participated in a clinical trial and talked with me about it.

He said he had a good experience with the one he participated in. I had wished that someone could have pointed me in the direction of these trials when I was first diagnosed, or barely diagnosed with one of several AI illnesses I have, so I may have been able to STOP or slow down some of the damage that is now too late as far as medication wise now. So, my own experience led me to surgery on several joints, and replacements on three large joints, and a 4 level cervical fusion, discectomy & two artificial discs replaced two of the severely damaged ones.

My own Rheumatologist in fact does research, and also teaches, plus still sees some of his patients. He had talked about a project "one of the clinical trials" that were putting together, and then I found out the place he teaches and does research at in Dallas, is also very well known for all of their clinical trials.

As for myself, before I had found a "great" Rheumatologist (who I thought I might lose in fact to his research and teaching), fortunately I didn't, by the time I really got to know about all of these "trials" I was in a good spot with medications, doctors, tests, labs and so on.

So, rather than let other people get under the radar and not be able to possibly enroll in a clinical trial, I try to make sure and put the URL up when they send me a current list via email. There are absolutely so MANY of them going on, and if you are fairly near a big city, I almost guarantee you can find something that may be of help to you.

Of course there are "trials" on ALL types of illnesses, but when you search for RA, Lupus, Sjogren's, MCTD. UCTD, JA, Still's Disease, Ankylosing Spondylitis, Psoriatic Arthritis, you certainly will find an entire host of trials for those illnesses.

Of course there are so many other Autoimmune Illnesses such as Multiple Sclerosis, and that list is into the hundred's that I am sure there are plenty of trials to go around for many.

It can be a way as I said of helping your own situation, possibly others also, and make way for hopefully a quicker and accurate diagnosis, more medications, possibly more ways to put these illnesses into remission, stop them before they begin, or possibly CURE those that are now suffering from them.


Wednesday, November 13, 2013

(Off The Cuff) well sort of, Talk About Having the Heck Scared out of me this morning!

Morning All! I had been checking email this morning and reviewing the weather, latest news, FB posts and so forth. Then I come here to see what is happening, and I could get into the "backend" of my blog. But I could not SEE the actual BLOG itself!!! I just about had a heart attack! I thought something had happened!

I could not get it to come up in either browser. I kept trying and trying, was just about ready to cry. Then I went into another area of the backend where I can make changes etc. From there I can also view the blog, and FINALLY, it came up. I guess I happened to be in here while Google was updating blogger or something. It is NOT a great way to start out your day for sure.

I hope that my "off the Cuff" post to the blog, will kind of give an "introspect" to "life" as someone who has "autoimmune arthritic illnesses" yet still does want to live life as "normal" as they can. That is IF there is a normal to any life these days.

Bear with me this morning. I think Blogger is updating something and I am trying to figure out the proper key commands to get the "emoticons" to work on my blog. I used to be able to "code" them with the ASII coding. Of course then they make them easier for FB, Myspace, and other places like the Messengers. But, I am still thinking I should be able to use them here on my blog without having to use HTML code to do it.

I am up to my eyeballs in "overload". After only being gone overnight, I came in yesterday and just was "aggravated" all day long. For one thing the "brain fog" was terrible. I could not type, think, I was dropping everything, spilling everything, and everywhere I look even this morning seems to be a pile of junk I need to either throw away, do something with, dust, clean, vacuum, check on, fix, make, wash, clean or whatever!!!!

Then having to think about going to the surgeon with this hernia is not making it any better. Especially when Jim's shoulder and neck are NO better! We maybe facing him having an MRI and no insurance. Even though we found that the "Hope clinic" will get it done for a very reduced rate, it still means over $300.00! PLus on top of all of that, I have a few teeth that are not "right"…. I fear I have another cavity at the gum line on a top front tooth… and then several they pulled, seem to have the teeth next to them either have chipped off or something, they are cutting into my tongue and cheeks when I eat or talk! LOL!!! Well heck, good way to lose weight and not have to have people listen to me griping and whining. I know several that would probably be overjoyed at the idea that I couldn't talk for a few days.

Then the dogs are not really well. They are getting a bit older and the younger one, Bubba Gump, is ALWAYS COLD! Bless their hearts they are not happy campers about this sudden change in weather. I am having to give them Claritin and Benadryl for allergies. Then all of my plants (and I mean over 50)  had to come in due to it getting cold. Well, they aren't happy either! They are all pissed, and their leaves are turning brown, yellow and I am pulling so many leaves off of them, I fear I will lose them!!! My house is just a wreck. I got to looking around yesterday, and I need to have a major (throw away) session! Our home is tiny. About a 1,000 square feet! We have to "make shift" closets, because there really were not any when we first bought it. Don't get me wrong, we are still thrilled with it. But, I seem to have become a pack rat I guess. I look around and it seems I have just too much "stuff"! The older I get the more I want to "reuse", "recycle" etc. And that is a good thing! There are MANY things I do that really help the environment, conserve waster, and save money that is for sure. But, I think I have also almost gone overboard and I catch myself "saving" this, that or the other, thinking "Oh, I'll find something to use "this" for?" Then 3 months later it is STILL SITTING HERE, piled up and NOT used! Thus, I am going to get a HUGE box and begin recycling right to the recycle, or to Good Will, or we have a place here called "Soul's Harbor". It is kind of like Good Will. They take all kinds of "stuff" and resell it, for a tiny amount. In fact many people go there for "odd" things such as old china, and things you probably might find at a "thrift" store that has been in the community for decades like this one has. It was here when I was little, thus it has accumulated LOTS of "stuff"… as they say one person's trash is another person's gold mine!

In fact, we laugh at my Mom. She tends to go through these phases of getting "bored" I think more than anything. So, she goes through every closet, every drawer, and starts "boxing" stuff up. Then 2 months later, she unboxes it all, and then puts it all back in another box! In fact she has really "thrown" so much away, or given it to Soul's Harbor, that I don't know where she even finds anything to box or get rid of anymore! Heck, I've taken so many things for her and gotten rid of them, I am surprised her house is not completely barren. But, as I said, I think for her, it is something "to do" to keep her busy, especially if she can't get out due to weather, etc. So, I just smile and let her talk about how she is getting rid of this, that and the other. Then fuss because she doesn't have any new clothes etc. Bless that woman's heart, she happens to be one of the most DIFFICULT people in the entire world to BUY FOR! OMG, my Dad bought all kinds of stuff for her, and she always took it back, or gives it away. No telling how many things I've gotten for her, thinking it would make her life easier, or it was something she could "really" use, and guess what? She either gives it away, gripes about it, or gives it back to me rather than use it.

I can recall after I was grown and married, Dad calling me a couple of weeks before Christmas telling me to "go by Mom" something from me for Christmas! And as I always told him, she will not be happy with it if the President gave it to her. She can't even buy anything for herself she likes. She winds up never wearing it, or taking it back, or again just giving it away. Clothes and shoes are the worst. No lie, I spent a YEAR, or more trying to find a PAIR OF SHOES, that woman could wear and LIKE! We have been shoe shopping more times than I can count on both hands. And every time she would buy some, go home, leave them in the box, and gripe about them for some reason. She wore the same pair of worn out "sandal" like shoes through "ALL" seasons, and I could NOT find any shoe especially closed in for the Winter should would wear. So, about a year ago, we were in Belk, over in Waxahachie. Well, the lady in the shoe department over heard our discussion. Again Mom took back yet another pair of shoes, to exchange. Well, the woman said she had the perfect shoes as far as "comfort" that Mom could ever put on her feet, BUT they are not PRETTY! And they aren't. They are the "clog" type of shoe, and are a black suede leather enclosed of course in the front. But believe me, they are not made for "dress wear". They ARE made strictly for comfort!

But, low and behold, the lady brought a pair out in Mom's size. She put those shoes on, and never took them off!!! She put her old worn out shoes in the box, and wore those out of the store! I almost fainted!!! I thanked that lady about 10 times!!! OMG, talk about a relief! And believe me she wears those suckers everywhere with everything.

NOW! If I could ONLY FIND her some pants, tops and dresses she liked that well, half of my life's problems would be SOLVED!!!

So, even though this is kind of "Off the Cuff"… it is also about how we, each and every one of us with these Chronic Daily Autoimmune Arthritic Illnesses, STILL DEAL WITH DAILY LIFE! We have ALL of the daily "stuff" to do, along with trying to KEEP OUR OWN BODIES, from DESTROYING US! It is a difficult battle, and not one for the weak at heart…..








Friday, November 8, 2013

A Letter From the Founder if IFAA - Tiffany Westrich-Robertson

She has developed shingles due to this outstanding trip! You will understand as you read her letter below!!!

(Tiffany) As CEO of IFAA, and autoimmune arthritis patient, I understand these diseases and the toll they can take on the body. If you view a photo posted of me yesterday morning, right on this page, I'm smiling, happy, and looking "normal". I'm speaking with the Director of NIAMS- the arthritis division of the National Institutes of Health. A highlight, an honor, a moment I will always cherish not only due to the outstanding work performed by Dr. Katz, but because I'm humbled as a patient to have shaken the hand of a man who works day and night to better my life and those in our community.

Now the reality of how much I truly know about these diseases- how much I understand. I am you, you are me. I flew from Los Angeles to D.C. on Tuesday, prepared for the trip and potential flare for days prior, working from the sofa and resting as much as possible. I knew Wednesday would be a 13 hour day, filled with back to back meetings, in a different time zone, jetlagged and sore from travel. As the day winded down the fatigue was so powerful I sat alone in the restaurant barely able to put fork to mouth, yet still the blur of the days triumphs keep an internal smile inside me that kept til morning.

I took a long bath before bed, preparing for the long flight home in the morning, hoping my body wouldn't freeze in response to the extreme use the day prior. I anticipated a fever, fatigue, and general flu-like feelings, so I planned my outfit for travel accordingly, buttonless/zip-free pants with a pull over top and walking shoes that could be easily, yet discreetly, slipped off under the plane seat in front of me. I then traveled across country home, just 2 days after the original departure, and basked in the outstanding memories of the science heroes I had the honor to meet. I smiled at the thoughts of the CEO's and other advocates I sat next to, shared conversations with, and will continue to walk side by side together in our fight for the community. Then as I made my way back to my home and relaxed on the sofa, I realized all the preparation I planned to ensure a minimum flare was simply not enough. Within hours of landing, here I sit- or barely sit- with an outbreak of shingles that are placed such it makes it difficult to sit or lay comfortably. They will certainly trigger a full flare, joints-tissues-and flu like symptoms, and I may be laid up for a bit. But I want you to know it was all worth it. Every moment of the fatigue, every minute of pre-travel prep, and now every moment of discomfort. It's worth it, because I met scientists who listened, I talked with leaders who want to unite for change, and I was invited to sit side by side the scientists and doctors at the NIH to become the 2nd patient ever to help NIAMS review their grant applications in 2014


I could have posted more pics of me, smiling and cheering for this step towards victory. But as a patient myself, and the leader of this nonprofit, I choose to tell the truth. To let the world know that every single second of my trip was worth the journey. But that journey comes with a price. We may look 'normal' on the outside but when we push, even if we plan accordingly, our bodies' will respond with a vengeance.

I'm not posting this to complain or for sympathy. I am not looking for 'fans' or for praise. I am posting this to show that I am a real patient with real consequences for pushing my limits and doing my job. But this is the role I chose- the role of an advocate. I, and the rest of those with IFAA who also are patients, will continue to sacrifice as needed to ensure our community is heard and changes to research are made.

Did I get shingles and flare due to the trip? Yes. But I shook the hand of the director of NIAMS and sat next to some of the most amazing community heroes...and I'll do it again and again.

IFAA is the first and only nonprofit that focuses solely on clustering together these few diseases in order to solve the equation:
Early Detection=Early Referral=Early Diagnosis=Early Treatment=Earlier Possibility for Remission

We are changing the world the best we can. Every limping, flaring, and blistering step at a time.

Wednesday, November 6, 2013

International Foundation for Autoimmune Arthritis Illnesses doing to Make AAI - diagnosed, treated, & hopefully cured!




I guess you can say I am a bit "prejudged" over this incredible lady! Tiffany Westrich  - and here is who she is with…


FAA CEO, Tiffany Westrich talking with Dr. Stephen Katz, Director of NIAMS at the National Institutes of Health (NIH). He was very thrilled there is now an organization representing the Autoimmune Arthritis Diseases!

PLasee take time to see what all this incredible Organization has done and is doing to treat, diagnose more quickly, give an understanding to all about the autoimmune arthritic diseases, find more researchers so we can hopefully put them into permanent remission!



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