LOTS of things going on... here is just a bit of an update on some of my Ordeal! Cars, Taking care of a Home, with you are "disabled" and by yourself, warranties, doctors, lab tests and you name it!

I've not said much about what all has been going on over the past 2 weeks... I had several "decisions" I really needed to make, especially after getting "scammed" over the whole having my home painted, boards repaired and so forth, and yet he got away with MUCH MORE money than the job was worth for sure. I am in the process of filing a "civil suit" against him, but I am sure I probably won't see a dime of money, nor any more work done... so I've been doing "as much as I can" to get it finished, plus I've got trees that are still in desperate need of getting really pruned back or I fear I will lose them, and I have no 2 or 3 in a row in the back on the same fence line that have all died. One of them in the past 2 weeks or so suddenly, what I thought was just "winterizing" itself, no, a huge portion of it is dead I believe, and I am not sure what the heck is going on. There is a huge one that died and i still don't have it all down... 

right beside it, then another smaller one, plus the "neighbors" on one side of me put up a "privacy fence" and I know "why" but I will keep quiet at the moment, BUT, it was further into the "back lot" so I didn't know about it, which is fine, BUT THEY EITHER KILLED A TREE, OR SOMETHING AND IT IS ON THEIR SIDE OF THAT FENCE, BUT THE ENTIRE TREE THAT IS DEAD FELL ON MY PROPERTY ON THIS SIDE OF THE FENCE! I WAS so pissed, but the other is not much better. They built the HUGE GARAGE, that now with no rain, the "foundation" has pulled away from the ground all around it, which really does not matter to me, 

BUT HE WAS SUPPOSED TO DO AWAY WITH ALL OF THE JUNK, that was in the two "sheds" and i mean LOADS AND LOADS OF JUNK, they hauled away flat bed trailers full several times, yet rather than get rid of it all, HE BUILT THE GARAGE THEN STILL HAS A HUGE PILE OF NOTHING BUT JUNK BEHIND IT! Well in the first place, he was supposed to get rid of all of that, and in the 2nd I NOW SEE IT, SINCE THERE IS NO FENCE, AND THOSE OLD BUILDINGS THAT WERE KIND OF THE FENCE ARE GONE, and part of those dead trees are on his property line, so now I think that is where lots of the problems are coming from with mice, and Lord knows snakes and everything else, piled within and under all of this "stuff" that I cannot fathom to even wonder about... anyway I got "rid" of Leasing and "bought" my car permanently, a good move since the interest rate was .9% (less than 1 %)!!!! and now I don't have to worry over when this one is paid for, no more "leasing" or decisions, it's mine, and that is just how it is... 

anyway, more money than I really wanted once again to have to think about dealing with, but a good move in order to avoid either paying "out the lease" in 24 more months OR leasing again and so forth... my ceiling fan (new one) new enough I put it up I believe last summer before I fell and broke my hip... I thought it was a $6.00 part and I ordered it, replaced it, even had my son "recheck" to make sure I was correct, and THE DAMNED THING HUMS, BUT WON'T TURN THE BLADES, so I had to buy another damned ceiling fan, this time, I got it from Home Depot and got an extended warranty on it... I usually never do that, but now with my situation as it is, and I no longer can put the thing up myself, and besides they are much more expensive than the others I bought, so at least the thing is covered for 5 years or more... so if something goes out, at least it will be replaced, without me being out another load of money again.... and I didn't go to the "GI' doctor today... the weather is horrible, and we are supposed to have rain at any moment, and with it being Halloween, and terrible weather moving in, and I already am not feeling very well. In fact, I "thought" I may have "pneumonia" or some type of sinus infection or something.. This weather is really causing many people to get sick all of a sudden...

I was wearing shorts and a sleeveless top not a week ago, and yesterday it was a beautiful day, but the wind was so cool, that it makes me have problems breathing to get in that cold wind, and today, now it looks like it is going to come a flood at any moment, dreary and really cool, not as windy but the wind is also almost cold, with it cloudy like it is.... so we know TX weather, burn up one moment, in an hour be freezing... so here is my 2018 Prius C - this one happens to have everything but the "kitchen sink" in it, but I was not thrilled with the "black pearl" color.... any "darker" color cars in hot TX weather, just really suck... but it was almost less expensive than the 2016, and has a lot more things upgraded, even the rims and wheels, it has a GPS system, back up system, it tells me if I "get out of my lane" high beams that will "dim" on oncoming traffic themselves, and even has XMsirus radio I noticed, and "Gracenote"... and with that I will NOTE, I BROUGHT THE MANUALS IN FOR IT YESTERDAY, AND NO CRAP THEY ARE ABOUT ALL TOGETHER 5 INCHES THICK! It would take a "law degree" LOL, to read and understand all of the crap these cars now days do..... so I am somewhat "under the weather" but not just physically, more also emotionally and mentally, with all that has happened in the past about 4 to 6 weeks... I've been upset with myself because I've not been keeping my blog up and so forth. I never allow myself NOT to keep the blog and my newspaper current, but I've been so busy outside everyday trying to finish up as much as I can on the house, that most everything else has been on hold...

Health... Lab Work... and Issues about different doctors', tests and so forth...

Now quickly, I have "developed" a couple of "new issues" that I was NOT thrilled with from the lab work i had done before my appt yesterday. I have never had "thyroid" problems, and they have checked it every 3 months for a long time, but yesterday I do have "High above normal" on my TSH, which I think means my body is "making not enough" or it's not coming from the gland as it should. So, they did another blood test yesterday. We shall see how it comes out. 

My Grandmother and my Aunt on my Mom's side both had thyroid problems, and both took medication for many years. Then my Vitamin "D" levels were very low, which in a way does not make sense. All of the things in my diet that I eat on a regular basis "should" have it up but it's not, and that could be from the RA, Lupus, and/or medications I am on. Plus my Calcium levels are very low, which really does not make sense because i eat low fat cottage cheese, or fat free, yogurt, I use Almond Milk all of which contain lots of Calcium, plus I eat not all the time, but I do eat Sharp Cheddar Cheese when I eat cheese, and I buy the lower in fat on it also, it comes now in 2% milk fat. 

I also have lower Protein levels which again, I am not a "meat eater" but I do eat peanut butter, I made my FIRST BATCH OF MIXED NUT BUTTER OVER THE WEEKEND! It turned out awesome! It will cost me about 50% LESS to buy the nuts, and make it myself, with no added sugars, salts (if I buy unsalted nuts", plus no preservatives, and nothing in it, but NUTS! I did a mixture of Almonds, Cashews, Walnuts, Macadamia nuts, Pistachio nuts, a few pecans, Brazil Nuts, and I think one other one, but no Peanuts in this one, I eat Peanut Butter so I didn't want peanuts in the "other nut butter" as I call it. So, I will probably make both my own Peanut butter and other nut butters from now on. It's easy, and does not take but a few minutes in the food processor. I have to refrigerate it, since it has no preservatives, but I have been doing that anyway.

Then of course my Anemia is still "with me". It is still there, but as my doctor said, it seems to kind of be finally "holding steady" so rather than "set up" something else other than my B-12 injections, we are just watching it. The RA and Lupus cause that also. Then my "Parathyroid" tests were very "High" above normal. I didn't realize that they have a great deal to do with kidney functions. But, Vitamin D (which I am low on) has an effect on the "parathyroid functions" and of course Calcium and Vitamin D effect one another. 
Your body does not absorb "Calcium" as efficiently if the Vit. D is low, I believe. I knew they effect 
one another. So, I am getting a "prescription" strength Vitamin D, and he called in the Calcium also, But, I feel like insurance will not pay for the Calcium, and I remembered that Humana actually pays for like 50.00 in "over the counter" meds if I order them through their mail order service. So, I can get the Calcium through there since I have that allowance I can use to pay for anything that the insurance as far as prescription does not cover. 

He said I show "very, very mild and early" kidney function issues, but again, nothing to worry over, and probably the RA has a great deal to do with that problem. The other thing and it's been going on for a while now is that my "bracycardia" (slow heart beat) was REALLY SLOW YESTERDAY! 49 beats a minute, which is very slow. I know medication they can cause it, but it concerned me. One of my medications for my heart that is a factor in that issue also. I've cut back, way back on one of my medications, because it also causes the heart rate to be slower.
 
The "Barrett's Esophagus" he wants me to see a GI doctor! Dammit, I don't want to have to go to yet another new specialist. I am already up to my ears in specialists and I am sick and tired of having to get a new one for every little thing that comes up. When I had the endoscopy done and they found the Barrett's, my doctor just sent an order over to one of the general surgeon's and I thought that would be enough. THEN if the "Barrett's" shows signs of dysplasia or changes, THEN SEND ME to a specialist. 

Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Clinical Trial possibly in your area, for a new "biosimilar" study!!!

Rheumatoid Arthritis Clinical Trial

The currently recruiting trial listed on CureClick for rheumatoid arthritis is a clinical study for a biosimilar medication. We have received several messages about this trial so we wanted to post some additional information:

According to the FDA, “Biosimilars are a type of biological product that are licensed (approved) by FDA because they are highly similar to an already FDA-approved biological product, known as the biological reference product (reference product), and have been shown to have no clinically meaningful differences from the reference product.” 

For this trial, one group will be given the currently approved and available medication Rituxan® (rituximab) and the other will be on a biosimilar version of rituxumab. Neither group will receive a placebo. The goal of the trial is to see if the study drug is as safe and effective in patients with rheumatoid arthritis and attempt to show it has no clinically meaningful difference to the reference product (Rituxan®).

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MORE ABOUT THE STUDY FROM THE SPONSOR:

The purpose of this study is to compare the proposed biosimilar study drug rituximab (GP2013) against a standard approved treatment rituximab (Rituxan®) to see if the study drug is as safe and effective in patients with rheumatoid arthritis.

• The study drug (GP2013 and Rituximab) is administered by IV Injection (IV).
• At least 174 people have already taken this drug in clinical trials
• All study related medications, analysis, hospital visits and procedures are free

Eligibility Criteria:

Participants must:

• be at least 18 years old
• have been diagnosed with rheumatoid arthritis for at least 6 months
• have had inadequate response or intolerance to DMARDs (disease-modifying anti-rheumatic drugs) and 1 – 3 anti-TNF (tumor necrosis factor) therapies
• have received methotrexate for at least 4 months with 25 mg/week as the maximal dose

Participants must not:

• have significant liver disease, or congestive heart failure
• be taking a high potency of opioid analgesics (e.g. methadone, hydromorphone, morphine)

For more information about the study, please visit the link provided to you by your Ambassador.

FDA APPROVES 1ST "Biosimilar"! Great News!

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm436648.htm

This is just awesome news! Although this particular one is not related to Autoimmune illness, it is definitely a prosperous beginning to getting "biosimilars" into other types of illnesses, including RA, Sjogren's, Lupus and many of the other 100's of Autoimmune illnesses.

Here is another link that gives you a huge amount of information on Biosimilars. They are NOT a "generic" form of other "Name brand" medications. I am sure many of us are thinking this. But this website below DOES tell all about them, all of the huge non-profits like the AF, IFAA, AARDA, Lupus Foundation and many more that are supporting this effort.

This can mean many more of us that have these illnesses be able to have a more "affordable" type of medication in the near future.

So, take a few moments to look over the website, and also the link above is the news press release for "ZARXIO"....


http://www.biosimsafety.org/pbsamembers/

WEGO Health Awards Judging, Chronic Illnesses, Pain & The Brave People That Find the Strength and Courage to Talk, Blog & Write about it

As I worked on my WEGO Judging over the past couple of weeks, I've found that there are some incredibly strong women (and men) out there living their lives everyday, with one, two, three and more chronic illnesses, syndrome, and pain. They have also been through the HELL of hospitalizations that lasted for months, endless surgeries, transfusions, being not even able to eat and being fed through an IV (as I did in 2010), and some of them like myself, at that time the doctors really DID NOT KNOW what was wrong with me. My own PCP has made the statement since then on several occasions that he was extremely concerned back then I was going to die. Endless numbers of specialists came to see me... most of them were of a foreign decent, and frankly I could not understand what they were saying to me. Many of them at the time, didn't really know what the hell "Lupus" was. They blamed some of my illness on the Lupus, yet, they also were treating me for what they told us later was a "collapsed" bile duct. It was literally leaking poison into my abdominal cavity, rather than it going out of my system and being filtered out by my intestines, and out as it should. I had several "tubes" running outside of my right side. Later I had to even come home with them still in place, and we had to watch the fluid that came out into the bag, to make sure it was becoming more "clear" and not bloody etc. I went through that for several weeks. For at least 6 weeks I never put a drop of food or anything to drink in my mouth. There was a huge bag of "nutrients" that was white, and I was told it was a certain concoction mixed up by the pharmacy for me. I went through nights that I barely knew where I was. In fact, I spent mt 50th birthday having yet another surgery. Jim, my son, and my Mom were there because they had told me to "call my family" in, "just in case".... "Just in Case"???? I had at least 8 or 9 other IV bags hanging and pouring into me, pain medications that I watched the clock for and begged each moment I knew I could have more.... I really have never "told" this entire story, from start to finish, here or on my blog. I have put bits and pieces about it over the years on both, as well as it will be in my book. It took my system weeks to even be able to withstand a regular sip of "Coca-Cola in it. It would put my entire stomach and intestines into a "tailspin" and the next thing I knew nurses had to come in and change my entire bed, put me into the shower (dammit they never warmed it up enough and this was the middle of February and one of the coldest Winters in TX since I had been back).... any thing that was "food" "stunk" to me. Jim would go and try to find something I could stand to even remotely put into my stomach, and even certain kinds of bread smelled so bad to me there was no way I could take even a bite. Why I am telling this now here, I am not sure. Probably due to one of the blogs I read over the past few days, and her own battle with what later was diagnosed properly as Crohn's. But, more than that, it seems each year that February rolls around, which my Dad's birthday was on the 2nd, Ground hogs day, and mine of course just passed on the 15th, almost a Valentine Baby.. and it brings all of those weeks and weeks, and honestly months back into my memory. How ill I really was, and how it truly it is a miracle I am here today to type about this.... so ALL of you... everyone of you that have the stamina, bravery, the "guts" (no pun intended), the wear with all, strength... and many more descriptive words to say how incredible you are to tell "your" story. Whether it be autoimmune in nature, arthritic, FM, MS, and all of the other Chronic Illness and Pain so many of us endure... so WE can go out and tell others "it is okay"... you are still you.... you are not "less than", that life can be full, and fun... you just have to sometimes decide upon a "new kind of normal"... that is what I have to do, and even now... "normal" can change at any given time... I am THANKFUL, to be here this morning and able to tell a portion of my story... and I am thankful for my family, my spouse, kids and Mom, that support and love me, even though I feel like I disappoint them at times... and my true friends here that also love me for me... sick, well, mad, depressed, happy, or whatever I maybe at that moment, those out there know I mean you... that support and love me unconditionally, with Lupus, with Sjogren's, now with dentures and not my teeth, with the joints replaced, and the pain pump hanging from my right side... I am still "me"... and I feel blessed.... thank all of you for accepting me no matter whether brain fog hits, or I find myself on the sofa for the day, or I am up cleaning and doing "normal" things.... I am blessed.

How "Autoimmune and/or other Chronic Illnesses" seem to "slow you down to a snail's pace"

Lots going on here, there and yonder...mmm one of those "Texas" words "yonder"??? I have people especially ones in California ask me where "yonder" is??? Well, in TX, it usually means in the direction you are pointing! LOL!!! New word for today....  "lollop"... to "loll" around for short... or to be a bit in a lounging position and it can also mean to "bob" up and down.... I had heard this one and have used it so not really "new" to me, but it puts it in my head to use it more... I am in the process of finishing paying bills, cutting out coupons, and trying to NOT feel BAD!!! I woke up about 4 am with the worst headache, and my stomach was upset.... plus I just have no energy for some reason... and of all days... even though it is sunny outside, the wind chill has to be COLD as heck! Oh, another word I had tried my best to think of last night, and I could recall several words that kind of meant the "same" as what I was trying to come up with. Finally I got the Thesaurus out and looked up "neutered", "watered down" and so forth. Then the word I was looking for hit me... CENSORED... I think something due to me NOT censoring my writing there are times some may get offended by what I say. Now, don't get me wrong, I am not going to poignantly come out and write something meaning to piss someone off or upset them on purpose. But, if I begin censoring my writing, it is no longer what I want to say. It has made me wonder why I don't get as much traffic to my blog as I want. I realize that "links" back to other sites help immensely, to get your rankings up as far as SEO goes for sites and search engines. But, it is not even "strangers" that maybe "googling" a certain type of blog, or illness, and then they come across a link to my blog or facebook page etc. It is more about wanting ALL of those that spend time here at Facebook, Google Plus, and other places they may find out about me being a writer and published author that I am interested in. I seem to never get feedback. No matter if I write about my own health issues, about the other places I am a strong voice as far as advocacy, activist, and ambassador on, or if I am talking about my own latest catastrophic event of the day, I never get many replies back, or more comment is what I mean on the blog in itself. Does that mean people don't like it so father than say something tacky to me, they just don't say anything at all. Or is it I do hit the nail on the head for many, yet they just don't find it necessary to submit a comment on whatever subject matter I may pick for the moment. Well, unless something ridiculous happens this year of 2015 I plan on posting MORE blog posts, and working on both books daily, as well as learning a new word, getting back to my exercising since I have kind of flaked off the past several months. I do lots of running around since Jim is not able to go out, or clean, cook etc... so I get lots of "exercise" with all of that, but I need to be back on the stationary bike, out walking daily or trying once again to use my stair climber. Me and that thing have hell, but it is mainly because my feet want to slip and slide all over the place. That does make it difficult to exercise on when you are constantly having to reposition your feet.

Okay, I have done a couple of the "new" items on the agenda, and I stopped a moment to say hello to all. It is hard to believe the holidays are already past, the new year is here, and once again it is back to the "farm" to hitch up the mules, put the crops in order, get kids back to school, and put noses to the grind stone hoping for a better 2015 for many of us.... take it one step at a time, one breaths space at a time, one day, one week, one month... all at a time... slow down, stop. and try your best to "accomplish" something even if it a new word daily, that you can be proud of for 2015... read a book, write a novel, crochet, paint, learn to play an instrument, go back to college, or just spring clean your home and throw away everytthing that has NOT BEEN USED in a YEAR! I have figured out, if something is lingering around my home, whether in my closet as clothes, or dishes, or whatever might be "building up" and not being used... throw it in the recycle bin, take it to Goodwill, give it away, have a garage sale, but take your home to an entire new level... for me that does mean a great deal of getting rid of stuff that is just that stuff that sits around and is either already worn out, or I will never use, or was meant to do one thing or the other but I never got to it... and I am bound and determined, that I am GOING TO PAIN MY KITCHEN and have a new floor put in. IF it "hair lips" Harry as the old saying goes - actually it is "if it hair lips the Pope"... and I am not sure why, but that is how it has been said for eons... I already have colors picked out, and they have an already "pre-cut" cabinet top that is not all that expensive that should replace mine hopefully quite easily... so my hopes are that at the very least I get a "new updated" kitchen, floor to ceiling, and we get the outside of the house painted... of which I can do most of it myself, but I am just so slow, it will take me quite awhile by the time I sand down all of the old paint (Lord I bet there are 5 layers of old paint) on my cabinet fronts. Someone before us never scraped or sanded anything. and then when we got here, it was a hurry up, had our lease on our apartment ending, and did not want to pay another month's rent if possible... so there were somethings we had to kind of just "do half azzed" at the time, in order for us to move in that fine Winter of 2006, which we almost froze our butts off... Lord it was a cold winter that year. Jim was redoing our hardwood floors, and we were concerned about whether that coatings would dry on them fast enough for us... we really needed to scrape those cabinet fronts and doors, but time made us just get it painted and cleaned up so we could get moved in... wow, how the heck we made two huge moves, including coming to Amanda's wedding the Summer before we moved here, then Dad's funeral at the 3rd month of 2005, then we made the major move to San Pedro CA, and withing 3 months were on the road again for a long haul to Ennis....we got here on December 19th, 2005... Amanda had just had James on the 6th of December, and they all came up, well at that time it was Heather, James a new born, Amanda and Jimbo, then Jason and Danielle I believe both came over... I know Jason did... anyway down memory lane... due to me knowing what I could get accomplished then, compared to how long it takes me to accomplish anything now... is like a very long, long distance... Anyway, off to take meds, eat a bowl of cereal or something, and possibly get some writing done.... ;) ,

Covers I am working on for my Two New Books

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient

Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     



More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
                                                                                              

Some of Life's Little Disappointments - Especially When It Involves People, Promises and Illness

I've been on what some might call a "tear", "Rampage", "soap box", "griping session", or just plain bitchaaaching and griping over the past couple of weeks.

As this age, one would think by now, I would totally understand PEOPLE will let you down, disappoint you, make you feel less than, not as good as, or like you are some 3rd "rate romance", in some "motel rendezvous" - Touche' as some would say. A title to a song by Sammy Kershaw if my memory or what's left of it serves me correctly. Well, someone may have actually recorded it before him, but I do remember liking his version, especially with his voice singing it.

I am NOT "literally" speaking of any "incident" involving some 3rd rate romance or any kind of motel rende-anything... but the "feeling" you must have when you feel like you have some how it "bottom" of the pile of humanity. Those that seem to be sitting on top of you, and not even caring they are smashing your
"innards" onto the floor just beneath you.

I will say, taking totally up for ME, I've in all honesty, sick, not sick, felt like crap or not, kind of like "sickness and in health" have worked my butt off the past two years and honestly more, as a voice, advocate, volunteer, activist and Ambassador for the things I hold near and dear to my "stance" about humanity. I am definitely and maybe even a bit defiantly cut from a "different mold" than some. I would think that from the time I was about 4 years old, I totally became different than many kids, and later on, than many adults I have known or heard of. I have kind of "beat and whistled" my own horn and drum so to speak. I rarely go for the "normal" of anything. I've never felt being "normal" was anything but basically boring. And who in this day and age of almost being able to do anything... the SKY literally is the limit... would want to spend their life normally boring??? I did for years, OR I tried to "think" I was going with the general flow of those around me. Well, hell, I can attest that now I realize where I went, what I did, who or whom I met, saw, spoke to, and how I decided many years ago to live my life... was for many NOT considered anything but normal.


Sometimes I have to wonder if that is the reason I am "chronically ill".. as silly as that sounds, let me explain further. For those of us that are fortunate enough to have very little issues with our health, then you truly cannot possibly put "your feet in someone's shoes" that are chronically ill and/or in chronic pain. If you have been one of the people that rarely missed a day of school, went on to college, and the same happened, then you went out into the working world, got a job, and you just never miss work because of illness, surgery, and so forth. I have to wonder if that is even the "norm" now days. Maybe it is because I am a fully fledged "chronic illness" survivalist, that knows rarely a day that everything physically feels ALL RIGHT! It is usually one, two, three or more things happening to me physically, that effects my emotional and mental health also. If you awake to pain every morning of your life... you know without a shadow of a doubt (unless some miracle happened in the night) that you WILL awaken with some kind of ache, pain, or something that kind of makes your start of the day, a bit slower than many. For those like myself, that have to run to your desk (well almost more like crawl) take all of the "early morning" medication that you HOPE will give you a reprieve from pain, illness, or whatever maybe happening on any given morning of the week or weekend... so that is in itself is your 1st priority. Then you dive into go and turn on the coffee pot, and probably take a look at the MANY things on your list or lists that you either NEED to, HAVE to... get done... or more like what you can possibly PUT OFF until the next day or later in the day once your joints, bones, hips, shoulders, neck, feet, ankles, thumbs and probably the rest of you are kind of "lubricated", jump started like a small car battery, & then after the brain fog lifts... you maybe able to begin your day.

ADDING THIS FROM TODAY SINCE IT KIND OF GOES ALONG WITH THE ABOVE... NOVEMBER 9TH 2014...

AND HERE I GO AGAIN... STILL ON MY "SOAP BOX"....


As if I were not busy and stressed enough I decided to take the Defensive Driving Test again... just for the 10 percent off my insurance but all and any discounts help for sure. I am doing it all online which is great. But, damned I don't remember it being as long as it is now. It has been a long time I guess since I took it last. So, they have probably added more to it due to cell phones and all of the new technology in cars that can help and also hinder with distractions.... so now I am in the middle of that, along with waiting for Geico to answer a question before I change policies, and then I had paperwork to come in for another thing I am in that has to be done every 7 months, I have three appts next week, the dentist, blood work and my heart doctor, plus my last Arthritis Foundation Ambassador meeting for my year of training is Tuesday afternoon, so I find out it if I've done everything to be an Ambassador, plus possibly did the extra things in order to be a "Platinum Ambassador". I found out the article that I've sent to our newspaper goes in (either it went in yesterday and wouldn't you know I did not get my paper) or it goes in tomorrow. I had an email from the new editor of the paper. I had sent it in about 3 weeks ago, and heard nothing. So, I resent the email, and still did not hear anything. I went down there early last week with a copy of the email and the article. The woman told me then they were having a change of staff, thus the delay. Well, I got a very nice email from the new "editor" who told me he was going to make it a "Highlighted" Article in the "Life Style Page" with my photo on it and everything! So, it is in the works also... but through all of this, then have have a "week" reprieve from APPTS!!! - only to have ONE EVERY DAY OF THANKSGIVING WEEK!! I HAE TO HAVE my pain pump refilled 2 days before Thanksgiving, Mom and I see the PCP the Monday of that week, and then I have to go back to Dallas to see my Rheumatologist the day BEFORE Thanksgiving... when ahe the heck am I supposed to have any time for a holiday... sometime next year I guess!!! It is insanity, and that week will be nuts anyway, due to many being off the entire week, kids out of school, parents possibly taking a few extra days off... I hate to think about Dallas Traffic... especially during the week of a major holiday... nuts, they already can't drive on normal days, much less during holiday time... I dread it... MY problem is also I am not feeling very well at all... I thought a few days ago I might be either coming down with something, or had a flare coming, ... and I just have not had the energy I really need to get over all of these doc visits, taking care of the house, grocery shopping... speaking of... I went Friday for my "stock up" we are OUT OF everything grocery trip... and I knew it would be a load. I took in about 7 or 8 reusable bags knowing I would probably fill them full. Well, I got about 3/4 of the way through my list, and I was hurting so badly in my lower back, my right hip and lower back, and side began to just hurt like hell. My feet were hurting like they do in the mornings when I first get up, and I was just almost not able to push the basket around. I had to LEAVE off part of my list, get in line, check out, get them to carry the bags to the car, and go directly home. I was a total wreck, by the time I drove home, got 7 bags of groceries that I could barely lift into the house, and then had to put it all up... myself... Jim helped by helping me empty the bags and sort stuff out, but he can't bend over, reach up, get on a chair etc... so of course I still had to get everything put away, and was grateful I saved 46.00!!!!!! in coupons... but it took me a couple of hours to print some, cut all of them out and organize them, then get them and me to the store, and get them out and double check them as I bought items to make sure everything was correct and check out....then of course as I said above get them home, put up etc.... I have and continue to discover between the time it takes me to get ready, shower, hair, makeup, then to get everything prepared lists, coupons and so forth, put myself in the car, get to the store, and walk through a huge store then get everything home... it takes all of my SPOONS for the Day and then some... and IT SUCKS!!!!! It sucks to feel ill, it sucks to feel old, it sucks to look old, and it just all sucks right now.... I cannot seem to get myself organized enough anymore to keep me from taking 5 times as long as I used to before the illnesses....

How "Serious" Do you Take Your Autoimmune Diseases and Diagnosis?

I had thought about this question last night, for some unknown reason. I knew last night I needed to sit down and write about this ASAP, before the brain fog kicked in and I forgot what I wanted to say or even write about.

Yesterday, was one of those days that I had or needed to play catch-up. I needed to pick a few things up from the market, needed to make a trip over my Mom's, and as the 2 days previously, since I had gotten little to nothing done, I felt I needed to get some stuff done. Last Wednesday I had felt "fine", or well enough to dress, put my makeup on, dressed a bit more decent, and get errands completely. All of what I needed to do, meant running and trying to get everything caught up. So, off to the bank, to the cemetery, to put gas in the car (it is 2.67 here!!!!!!!  YEAH!!).. air up the tires on the car, take some magazines to the library, run into get some prescriptions of mine picked up, then to Wally World, for a few items I can't get anywhere else. I did get it all done, Then I had to come home, put all of that stuff up, get Jim, and take him to drop off some paperwork to a potential pain physician and he also needed to sign a document in front a Notary. So, we also made a 2nd trip to the bank to get that done. From there Jim needed his flu vaccine, so we headed for CVS. Well. that turned into all for naught because in the 1st place his insurance WILL NOT even pay for the flu shot, which has gone up now from about 23.00 a few years back to well over 32.00 this year!!! Yes, I know, I know - everything has gone up but damned... also there are several strains in this vaccine than used to be, but I don't buy all of that, because the pharmacies and pharmaceutical companies are RICH!   Honestly, my belief is that ALL people should be able to get the flu shot at NO COST, if they make below a certain amount of money... NOT allowing those that want the vaccine to get it, just causes more people out there that have the capacity to get sick, and run up a much higher bill that a darned flu vaccine. So, I am not sure I get that 32.00 ordeal. I just saw on the news last night how MUCH MONEY OUR COUNTRY LOSES during flu season, for those especially that DO NOT get the flu shot... and you can believe many of them WOULD had they been able to pay $5.00 for it, or whatever they feel than afford.   

All right, back on the subject that I began this entire blog post about. I have had a couple of "epiphanies" about my own chronic illnesses and chronic pain issues over the past about almost 8 months or so. I always "felt" as if I had accepted the fact that I DID have RA, Lupus, Sjögren's, and so on... along with several what I would call "sub illnesses" that have followed right along with the natural progression of these autoimmune diseases.

As I have come to figure out lately though, I really HAD NOT met these illnesses actually face to face, nor had I truly down deeply that I had not accepted that I am chronically ill, with diseases that at this time have no cures, and even though we have some medications that certainly due help to slow down the progression of some of them. I think the very first time I truly felt I was "ill" was the day my very first tooth just fell out of my mouth coming loose at the tooth/gum line for no good or practical reason. Of course I've tried to be prepared for the day I would begin to have dental issues due to the Sjogren's BUT... never was I prepared for it to happen this soon, nor that fast. From the moment the first tooth fell out, within three weeks 2 more had basically done the same. I was at the dentist more in a month than I had been all my life!!! By the time 6 months rolled around I was missing at least 7 teeth, and I believe at that time in my life, struggling with the teeth, the thought of dentures that I SWORE I WOULD NEVER have... was almost more than I could handle. Little did I know it COULD AND WOULD get worse before things would get "better"... Christmas 2013 was not the most memorable... money was very tight, I seemed to have been ill with one flare after the other, bronchitis and it did not want to go away, and even New Years came and my Birthday fell in February, and the upcoming Arthritis Foundation Summit was coming so soon in March. Yet, I had not been able to get my biologic infusion of the Rituxan (that is AFTER WE FOUGHT to get it paid for, because my insurance refused to pay all of it, thus the infusion clinic had gotten the infusions approved through their private charity program. ) But, I had had way too many issues with infections, bronchitis, & a large dose of step prednidone due to the flares, I was just down and out until the very last right--I at the last moment made a trip to our urgent care center to get some last minute treatment for a Lupus flare that had just had me down and I couldn't go (this was Friday evening and my plane was due to take off MONDAY at 6:00AM). so this was the last straw in the box per se'.

Well, someone much more MIGHTY than myself handling things. By Sunday, I was able to pack, still not feeling like jumping over the moon, but compared to the week before. So come VERY very early Monday morning. Even up until I was getting my luggage out of the car, and checking my bags it has not hit me, that I was headed for Washington DC. Once I was on the plane, settled in and on my way, it hit me, I truly WAS HEADED FOR THE SUMMIT IN D.C.!!!

After the accident on March 26th, 2014 - everything went to hell in a hand basket. I believe the night I first came home from him having that massive back surgery, it hit me square in the face, that I had CHRONIC AUTOIMMUNE ILLNESSES, and I had better get hold of myself, or I would lose it completely.

 So, for the very first time rather than this frivolous thought of "yes, I have autoimmune illnesses" that I take medications for daily. MTX, Plaquenil, and usually a biologic, now we have added Orencia in, it will be here Tuesday and Sulfasalazine. It hit me so hard, that I literally had to sit down on my chair in front of my computer. Here I was, even being a voice, an advocate, blogging about them, Facebook page and posts about them, seeing how many others suffer with these illnesses, yet, I had never really settled into the mere facts of DAMMIT the hell, I have Lupus, RA, and autoimmune illnesses... which mean forever unless someone happens to invent a cure in the next few years. My mind was spinning, my head full of thoughts... how would I survive, how will I ever be able to help Jim, how can I keep on writing my book, my blog, doing my advocacy, my activist, my Ambassador work. Will I still be able to help Mom??? Question after question rattled through my brain... and with each question, the "other side" of my thought process had an answer... and that was YES! The "answer" was much simpler than the questions were. Inside, somewhere, somehow, I knew I would be able to "handle it all"... that may mean a change in all kinds of things, and especially letting go of what "normal" used to be and begin to accept what "normal" will be as the next days, weeks, and months go by. I was more in fear of the "change in normality I believe" than I was the illnesses, or Jim's physical situation after the wreck or any of that. Change is something that is frightening to most of man and woman kind... WE are truly creatures of habit. I realize very often we don't seem to be when we are younger. But, for the most part as we age, we don't do as well with change, uprooting your roots you have put down for so long, chopping them down, and learning a new "normal" is almost impossible for some people.

I could no longer sit there trying to figure it all out in my head at the moment, because so much "unknown" lie ahead... how long will Jim be in the hospital?, and all of his physical, mental and emotional changes, it will take time. So, I "picked myself up", and I got busy with notes of what needed to be done, when, where, how and so forth. I also had a couple of things I HAD TO DO FOR ME! #1 was at the time I needed to get my Rituxan injection. I was well for a change, even though worn to nothing due to all of the drama surrounding the car accident and Jim, but I did one day go and spend about 7 hours getting the first infusion. In two weeks, I was to go back and for the 2nd round. Then I should be good to go for about 5 months.

Little did I know, before two weeks rolled around, about 5 days after the 1st infusion, I began to have the strangest things going on. I "heard" voices, I was almost to the place of hallucinating, I was not sure if I was in my own "home" or not... I could not write, barely type legibly. I was talking to the voices, all around the house and walking the floor. I paced up and down the living room through the office and into the kitchen at least 50 times maybe more. But, I could not put a finger on what was wrong. I felt "sick" in some ways, but again, I was not quite sure how. I was not really coughing, but in ways I felt a bit feverish. Finally, for some strange reason, due to the fact no matter how ill I AM I don't run fever, but I decided to check it anyway. To my surprise I was running almost 103 degree fever!!! Well, that explained the strange voices, and the oddness I was feeling but where all of it was coming from I was not sure. This was a Sunday afternoon, and that meant no doctor would be able to be contacted. I certainly did NOT want to go to the ER, too much hassle, but I did know that we have an Urgent Care Clinic here now, but whether they were open on Sundays was a stretch.

Another thing, I honestly knew I should not be driving alone. I feared having a seizure. Even though I was taking aspirin, the fever was staying fairly high. And they strange things I heard, saw and felt would and could mean I very well with fever that high have one. Thus, the alternative was to call my Mom, Which I really did NOT want to do, but there was really no other way, unless I call 911, which was ridiculous, unless I did either get the fever higher and I felt I needed medical attention extremely. Well, as the story goes on, my Mom takes me, they are open thank goodness, and I have double pneumonia... of which the physician that saw me happens to also be an ER physician at the hospital. Which was good and bad. Because I was so ill, and had all of these autoimmune issues, he felt I needed to be seen by them, and evaluated to make sure I didn't need IV antibiotics... I begged him to try anything else first, but don't send me there. After I told him about Jim, and all that was going on with everything, he reluctantly allowed me to go home with high powered antibiotics, complete sofa rest, for at least 7 days, hydrate, watch mt temp several times a day. AND if I FELT ANY WORSE or could NOT get the fever down, I was to go immediately to the ER! So, I promised I would have my meds filled, go home, and not move off the sofa for at least a week. Basically that is what I did, other than having to take out trash and changing the dogs food, water and paper... I stayed at home, watched movies, took my medication and drank loads of green tea, juice, and ate very light stuff... and it took me almost a MONTH to truly get over it all. I never developed a cough but some people don't with pneumonia. I am sure between being so ill, then going to DC on a load of prednisone, then suddenly the accident happened and I am rushed on a plane before I think I really realized it. I had been in the very cold, snowy, but not dry snow, very wet snow in DC all day long, for 2 days walking in it for hours... and to put icing on the cake all of that happened... then I took the Rituxan, so that make the cherry on the top.

That also slammed me in the gut, with a punch... if I had not had the autoimmune Illnesses I "may" not have gotten that ill. But, it could be that no matter AI or not, I still could have contracted the pneumonia. That was in early April and went on for weeks honestly, As I said above, I was not sure I would ever get over the fatigue, tiredness, dizziness, the feeling like hammered crud every morning... I ached and I was sore... and stiff... but I did ... slowly I recovered and by the Grace of God, I did without going to the hospital which was an excellent thing and a miracle.

So, twice within a month, I had been really slapped hard in the face that I had chronic illnesses, that would NEVER go away.
                                                                       
Lately, the "dreaded" head of the Wolf popped it's head up when I got to thinking about how much medication it takes to keep me well. Then I go to get the flu and pneumonia vaccines, and become suddenly "ill" for no real reason. I cannot really say that is was either one of the vaccines. I've had the flu vaccine now for years, and I had taken a pneumonia injection 5 years ago and I don't having that could possibly cause me to feel as if I did have pneumonia and the flu at the same time. But, that is how these illnesses go. What may happen to you one time, may never happen again. Or something that has never reared it head, suddenly shows up out of the clear blue ocean, leaving you to wonder why the hell it came from.

I've learned as difficult as it is each day of my life, to try and not stress over the "little" things... and try to make best of the good things... also... when these AI illnesses decide to act up, flare, be in commission, or however you want to say they are "active"... to allow my body to "tell me" what it needs. Whether that is rest, or not, whether it is a certain thing to eat, or whatever needs my body, mind and spirit needs at that time, to try and slow down, and allow it to work itself out. Sometimes it may mean just a day of rest and movies. Another time it might mean a full blown flare and a trip to my doctor for a shot and prednisone. Others may put me on the sofa for days, until it is going away. It is never easy to "slow down". Each of us know that life seems to be moving more quickly than we can keep up with when we have a chronic illness, or deal with chronic pain.

The very last moment I had lately of "Hey, stupid, you DO have an autoimmune (bunch) of illnesses, that are REAL, and nothing it "in your mind" and if it is then it needs to be there so I will "listen" to my own body. I was just going through my home room to room, looking at what we need to "finish" the whole house inside and out needed to be completed. We ran out of time and money when remodeling at purchase time, thus we still have thing that really need to be completed. So, I was throwing thing out, knowing some things are just not anything we will use anymore. My "Motto" is if we have not talked about, looked at, worn, used... something in the past 9 months, then out it goes ... and as I gazed around at ALL we need to achieve it truly once again knocked me almost to my knees... I am ILL with diseases that have taken away my ability to "run like the wind" as I did a few years ago.

When did you first have a "reality check" about your autoimmune illnesses or chronic illness/pain issues? Was it as the very first part of a diagnosis, or did it really hit you hard later on, months or even really years later, that they or it is for REAL!!! You weren't living in some kind of night mare...????

Rhia
 

                                                               
                         

Spinal Cord injury, Lupus, Sjogren's, RA - ?? Happy 4th (Belated) Hope All is Safe - And What in the World is Happening to our World?

I started off with the title of this such as it is, because This post will be a conglomeration of ideas, of things going on... of how tough like can be... how things can change within the blink of an eye... and no matter where you turn er either have some "natural" disaster, man made disaster, or for the most part , if it is not one thing happening, it is another.
As far as Jim and how he is with the spinal cord injury... which I am just now honestly beginning to truly understand how long something like this can take to even show symptoms.... it can be months and months before the "cord" itself comes out of " spinal cord shock", plus healing all of the bruising, swelling and surgery.
Then I find out about this ( definition ) "Spasticity"(Spasticity is a feature of altered skeletal muscle performance in muscle tone involving hypertonia; it is also referred to as an unusual "tightness", stiffness, or "pull" of muscles. The word spasm comes from the Greek word σπασμός (spasmos), meaning "drawing, pulling." Clinically, spasticity is defined as velocity-dependent resistance to stretch, where a lack of inhibition results in excessive contraction of the muscles, ultimately leading to hyperflexia, an exaggerated deep tendon reflex on stimulation with a reflex hammer (or spontaneous firing of deep tendon reflexes as in clonus.) and how even though he was in the hospital 3 months, went through ICU, Acute Care, and to Rehab; then another Rehab... and out of the "hospitals" and into "outpatient therapy". Let me say that Baylor of Dallas is one "HUGE monstrosity" of a Hospital. And that is not including all of their other specialty's from the Cancer Hospital to the Dental College. We we blessed (if you want to call this horrid wreck blessed) that it happened so close to Baylor Hospital they immediately took him there. ALL of our hospitals have their own specialty's but Baylor is just a "golden" egg for Rehab and accidents with lots of brain injury, or spinal cord and nerves.. they have some of the best there.
I knew I would write about the entire happenings (since there were more than on thing that happened at the same time) that could have made the entire nightmare much worse than it is. Some people may look at Jim, on his cane, with his legs quite "wobbly" at time, his neck sometimes bent over, or his shoulders tend to want to roll forward, and they "wonder" if he had a stroke etc. I usually come right out and tell what (Tiffany) calls the "Elevator" story.. He was headed o I-45 to the DFW Airport. As he came upon the outskirts of Dallas and on I-45 where his has several 'In's and Out's... changing lanes and so forth... for NO APPARENT reason we have yet to see or know, he was HIT from BEHIND (now he was driving 60 MPR which is the speed limit through there) an 18 Wheel Tractor Trailer Rig , full speed rammed him from the back, enough we "think" that then it shoved our car under a "Tahoe" which was in the next lane to Jim's right. Then it seems our car slowed after all of that, but continued to "spin" over into another land and it appears he was slammed again by the tracker trailer --- he was "hit" at least Twice, and at a very fast speed to have done the absolutely horrible damage to what now does not even appear to be a car. Jim, does NOT REMEMBER ANY of this. All he remembers he was head North on "I-45 to go to DFW Airport for a plane to Washington DC, WHERE I WAS at the time this all took place. The ONLY thing he said was 2 "people" tried to get him out of the car & could not, so the firemen came to "cut him" out of the car. Well I think he of course already had "MASSIVE physical damage to his body" as well as a concussion, and the "men" were probably the firemen and the ambulance drivers there. From what I & he knows he was unconscious almost the entire time. I know he did "HEAR" something that terrified him though. We were in the Taco Bell parking lot a couple of weeks ago, and I accidentally cut the corner a little to quickly so it kind of made a scraping sound as a "wreck" might and he almost fainted it scared him so badly. So, I am GLAD honestly he does not "remember" the wreck. I think he would have many more issues mentally and emotionally had he been awake.
I was called from Baylor by a trauma unit doctor, while I was in Washington DC..and what made that so bad, is that his Mom had just walked up & thought I was crying "happy" tears that I was getting to meet her, see DC...and all of that. So, a gentleman who helped me through this entire ordeal took over the phone & got the injury reports, if Jim was able to talk, was he able to recognize, and his injuries were etc. I had to tell Jim's Mom whom I had NEVER met, but talked to over the phone for about 10 years that her son was in ICU due to a very bad auto accident. At that moment I just crumpled to the floor in the lobby the of Hilton DC. I could not think, talk, answer, I had just had news that was so totally unbelievable & that I had no clue how to get home (I was supposed to fly home with Jim on Sunday after we had visited The Capitol, DC, His Mom and had a mini vacation. There was a guy who was just monstrosity with everything that had to do with RA,Osteoarthritis, Juvenile Arthritis, and so forth. He spends ALL of his time when he is not working at Summits, meetings, and putting his efforts into helping especially the kids that like his daughter, was diagnosed with JRA at the age of 9 MONTHS OLD! His name is Chris, and was right there trying to do everything to help me that he could. He went to the head sponsor over the Summits, and Laura who is with the Arthritis Foundation and she had a ticket for me to fly out within an hour or two back to Dallas, so I could go be with Jim. At the time we did not know if he was even stable enough to make it. So, even though I was so about leaving his Mom there alone to deal with it all, I knew I had to get back home and to Baylor quickly. My son, Jason who at the time was in Houst working, got the word and he headed up I-45 to come to the airport and pick me up. He ran into some bad weather, yet he got there about 45 minutes after my plane landed. Chris stayed with me the entire time, checking on me, carried my luggage, getting me through check points with bothering me about my pain pump and so forth, thus we made it on just in time. He was a couple of rows behind me, and I was just blessed beyond words to have had him in our summit "group" and then to help with everything he could do in order that I got home. It was amazing.
As I have written to Laura on several occasions, I will never forget the kindness  the "Arthritis Foundation gave to me in my time of need, and I hope to be able to pay them back and even more in my own advocacy work, monetary when we ever get some of that, & to help in any way I can to make sure I spread the word about how important their foundation is. I have read that already on two occasions OUR SUMMIT in MARCH 26, 2014 already helped to PASS TWO of the three legislative issues that the Arthritis Foundation were there advocating for!!! That is just incredible!
So, here "WE" (I) am in the smack dab middle of my own nightmare with Sjögren's Syndrome and trying to figure out the "mini implants" (not sure why they call them "mini"..... this is certainly no "Mini experience". By the time I am through I MIGHT be able to eat Christmas Dinner 2014, if I am fortunate!

Ra - Orencia and MTX Combined! Initial Studies sound promising...

Orencia Combo Tops in Early, Severe RA

http://www.medpagetoday.com/MeetingCoverage/EULAR/46288?xid=nl_mpt_DHE_2014-06-13&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786

World Autoimmune Arthritis Day!!!

World Autoimmune Arthritis Day Are YOU ready for World Autoimmune Arthritis Day 2014? WE ARE!Tomorrow we will launch a GLOBAL VIRTUAL WAVE to kick off the official registration, so make sure to join us and dozens of other organizations as we ignite the world in excitement about the countdown to May 20th!But first, the "Best of the Best" 2014 Nominations are OPEN! Please use this link to nominate the Best Bloggers, Support Groups, and Rheumatologists around the world. All nominees will be posted as resources for WAAD14.To learn more about WAAD14 and to nominate someone, visit:  http://www.worldautoimmunearthritisday.org/Nominate__BEST_of_2014.html

More on RA- Critical News when it comes to how it Systemically Effects the Body...

There are several great links, article and information that is critical to know about  RA and how it can Systemically Effect the Body. Many people think of "Rheumatoid Arthritis" as "arthritis", which is TOTALLY WRONG!  "RA:(Rheumatoid Arthritis) can effect just about every part of the body... starting at the joints sometimes. Yet, it can cause horrible fatigue, heart problems, liver and kidney problems, problems with the brain, with they eyes, with the ears... and so much more. That is why you see so many of us trying to "get the word out" and spread the news these are serious illnesses that when you delve into them, you find they can be "deadly". Lupus, which is another Autoimmune Arthritis,  can even be worse, damaging skin, bones, the heart, liver, the lungs, causing severe fatigue, brain fog, and leading to heart problems and stroke problems. Women and/or men with RA have a 50 percent chance HIGHER in have a heart attack or stroke.

When I saw these a moment ago, I wanted to post them. They go along with the WAAD14 and all of the information, research, and activist roles we are in with the IFAA, the Arthritis Foundation, WEGO  and many others out there trying to get better research that would lead to a earlier diagnosis, earlier treatment, less sign effects & catch these illness BEFORE they do GARVE Damage as they have on many of us.                          


http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/expert-interview/a/44104


http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/early-diagnosis/a/44107



http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/



http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/Infographic/i/38228?xid=nl_mpt_DHE_2014-03-17&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786

Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?

I will always be one of the first to admit, "no one" is perfect. We don't live in a "perfect world". Everyone of us are human beings. It matters not whether we are highly educated professionals, or a Mom or home maker. Whether you are the President of the United States, a banker, lawyer, and of course a DOCTOR, even though we want to "think" these people are more "immune" to errors, and yes they should be, we live in a "too fast" paced world, that for the most part offers "little" time to try and "double check" every thing we do in a day's time. 

I will also say that for the most part, I "trust" my physicians. If I didn't then I would and I have moved on before. If you "lose faith" in someone whether it be your physician, a banker, or anyone you do business with, must confide in, or within the very people that you have to rely on to sustain daily life necesseties, where do you turn to, and where do you go from there?

 I was so totally hopeful that the new year would bring "hope", a new vision, less symptoms, more ability to help make changes in this system of errors when it comes to ALL of the horrid evils of autoimmune illnesses, medications, insurance, or lack thereof, doctors, pharmacies, and the entire realm of what the hell is happening to cause such grief with those that seem to just NOT care about patients, about their own people, and how we are supposed to try and "cope"? Each day seems to be worse, not better. Things seems to go from hoping it will be "less complicated", to more red tape, and less reasoning with any human beings when it comes to the health rationalizations of life. Never have I seen such a lack of regard for "humans" from the medical world. I sound like I am on one of those "rampages". But, it is very difficult NOT to feel that way, when each place you turn to, each physician, each pharamcy, every phone call to your insurance company, every email you send... each medication, every step you make, turns around to slap you in the face, and make you wonder is any of the struggle worth it? I cannot possibly be the only one feeling the overwhelming stress of things getting worse when it comes to our health, and our health care workers. More and more I see doctors who are supposed to have taken an oath to "help humans", turn their heads and watch people become more ill. When you are reading daily, that those in dire need of medications such as the biologics trying to cope with THOUSANDS of Dollars of out of pocket costs due to this once again "tier system" of how we are "told" we can have medications, it makes me literally sick! Who, and mostly NONE of us with chronic illnesses can afford to pay $5,000.00 a MONTH out of pocket to get the one medication that may help keep you able to just live your life?  It is total insanity. I realize I am NOT the only one! That makes it even more difficult to deal with. Day after day, month after month, rather than watch "head way" being made, what we see is a government that absolutely DOES NOT care about their own people! Anyone that can take office, and turn their backs, to line their own pockets, in the name of cutting benefits so much that in 2015 Medicare Advantage Plans will CUT paying physicians/medical professionals (the "term" used in the original article was "insurers". That is so it does NOT sound like it is our doctors/medical professionals that are getting cut - another "loop hole for them) 20%! How can I (WE) even begin to rely on that kind of nonsense? What happened to taking care of your own people? It is very obvious greed, greed, greed and more greed fills our nation and our world. I was going to put this up on another "friends" feed, but there is no reason I should "push" my own issues off on those that may not feel the same way. The entire dilemma that has prevailed over my life in the past 3 months, is one that sounds like it belongs in a tale of horrors. Even when I "KNOW" for a fact everything I am "saying" is true; as I go back to either read it or email the ordeal to a friend, it is so hard for me to say "yes" this is really how it is! Where did we as a nation and world go so horribly wrong? When did it get to where "money and power" rule over it all? And where do you really find answers? I of all people, have always been able to "stand" within the power of faith and hope. I don't pretend to "cram" my own beliefs down anyone else's throat. Never have, never will. Everyone has their own personal and private feelings when it comes to how they view hope, faith and all of what might be considered "religious" in nature. But, the problem I feel is the "lack" of it all. There is little hope left. Medically speaking, is just one issue. Turn on your news every day. What do you hear that gives you any kind of true hope? Because we are finally backing out of wars, where we probably may have stayed out of them in the first place? Thousands that die daily due to lack of water, lack of food... and now we face yet another HIGHER scheme of things on the very thing that sustains us? FOOD!? Why? Because we lack water, we are facing drought circumstances that we have never seen in our own country since before the 1800's.... how can our "elected" officials sit around on Capitol Hill and justify the ridiculous insanity of "cutting" benefits for those that can barely afford to buy decent food to sustain us, much less "pay" for medications that although should be considered a "necessity" become things that are more a luxury. 

Those of us on a "regular salary", or disability, or making minimum wages... even those making a bit better salary, cannot possibly afford to pay THOUSANDS, even HUNDREDS of DOLLARS a month out of pocket for medications! I often wonder whose fingers are in whose pockets? If you could be one of these "minute" insignificant "bugging" devices that could fit in a clock on a wall, or under a lamp in some of our places in government, in our local doctor offices, within the pharmaceutical companies in the world, in the very places that things such as "lack of caring" goes on, how shocked would we be? How shocked would you be, just like a dear friend of mine told yesterday on her FB page. Her doctor wants her to have a "special type" of MRI on her heart. Yet, when the doctor calls the order in at the hospital, he is told, "that procedure" can't be done there. Now you tell me, if he is a doctor and he is that has been dealing with a hospital, outpatient or whatever type of facility in the same area for any length of time, he knows "what procedures" that place can do or can't do. Doctors are around for the most part long enough to know whether they need to send a patient to a "special facility" for a specialized type of MRI on the heart or not. SO, why all of a sudden does he get this type of information, that he must relay right there to his patient? He has to tell her that "I'm sorry"... for "some" reason, I can't get it done at that hospital? Then do they fully expect for us to say, Oh, Okay, well, if you find some place that it can be done, give me a call? How ridiculous does that sound? 

Just as ridiculous as a NURSE in my own PCP office, that has been seeing me now for well over 4 years, "hide" and NOT intervene as that nurse basically is allowed along with a "PA" there to tell my husband "well, if you don't like my care, take "her" meaning me, to the ER! What the hell kind of doctor is that? Talk about losing confidence in your physician! Then he is not even courteous enough to "check" on the situation and try and find out what the hell went wrong, and why the hell would ANY "PA" get her "feathers so ruffled" due to a patient and her spouse being concerned and just questioning why a certain treatment would be given, when there is a very strong chance that very type of medication is exactly what got me in the situation I am IN in the first place? If a doctor, or PA, or nurse, is that big of a "chicken" and they are NOT willing to try and get hold of the matter to straighten it out, and thus TAKE CARE OF THEIR PATIENT, who should have been NUMBER ONE, then how the hell do you trust any of them? If this had just been one incident, or a "new doctor" or someone "not familiar" with my complex case, I "may have" been able to justify a portion of their lack of brain power and intelligence. But, when you cannot even have your physician call you, return a call from you, trying to find out what the heck is going on, why would I bother to put my life in this medical "so called" professional's hands? 

I've written an email to a friend of mine explaining the total amount of crap I went through over the past about 7 days! I am going to post most of it here, and I know you are going to think I have to be making this story up! But, BEFORE I get more into that, let me tell you what just happened! Here it is BEFORE 8AM in the morning. My phone rings, and guess what? It is from LEXINGTON KY! NO NAME on caller ID, just that town name. A "woman" announces she is from "Humana" and asks for my Humana ID number!.... in the first place, it is BEFORE 8 AM CENTRAL TIME! IN THE 2ND PLACE, WHY WOULD I (I did NOT call them) give out my insurance ID number to someone I have NO idea is, what they want, and why they would call ME at this time of the morning? I told her I WOULD NOT give out that information, and in the 2nd place I AM SICK! Where were they this past two weeks when I tried to get them on the phone and get my ENBREL??? You sure can believe I jumped through 50 hoops to get anyone on the phone, it took them 10 days or longer to even get medication to me that I should have had 7 weeks ago or more. I probably WOULD NOT BE SICK, if HUMANA would have DONE THEIR JOB! Now, I hang up, and I call THEM BACK! Guess what they tell me... THEIR OFFICE IS CLOSED! NOW how can "they be closed" when they just called me and asked me for my ID number? Ever since I FINALLY GOT MY ENBREL LAST THURSDAY, I have had A PHONE CALL EVERY DAY SINCE FROM THEIR PHARMACY wanting to TELL ME HOW THEIR NEW SERVICES COULD HELP ME!!! THEY COULD FREAKING HELP ME BY DOING THEIR DAMNED JOB, GETTING ME my medications and not delaying me to the point that I am almost to the place of being ill enough to go to the hospital! THIS is the very KIND OF CRAP THAT I HAVE HAD MORE THAN ENOUGH OF! 

How funny it is WHEN I NEED THEM... forget it... you cannot get anything off of their website (although they always say go there), you can't get anyone on the phone, but boy they surely can call you day, night and weekend to tell YOU about HOW THEY CAN HELP YOU!!! 

Now, back to the Other issue at hand.... I've told most of the story... from this, I did NOT get my Rituxan.... due to HUMANA NOT wanting to pay at they should... the entire 'BIOLOGIC" ISSUE. So, when I am severely ill, with flares 6, 7, 8 weeks later, at my doctors office... and the PA decides even though I say nothing about any type of "infection"As far as I was concerned showed no and had no signs of a "sinus infection. Yet, she insists on giving me an antibiotic, after I am already very immune compromised due to NOT having my medication, having 2 flares, and she gives me of all things "Omnicef"! Now I am not sure how many of you check out medications. I am sure for the most part, all of us, or the majority of us with these autoimmune issues DO watch what we are given as far as medications. In the first place, many of our "autoimmune medications" do NOT mix well with other meds. It can cause all types of complications, thus we are probably for the most part pretty good about double checking medications, especially "new" ones we are given. BUT, as I say, what about those that are elderly, or they don't have access to look up medications, or they just "trust" what their doctors say, and take the medications. We are supposed to be "pro-active" about our own health. Yet, as I have found out, being pro-active with some physicians is just like stabbing yourself in the foot. They HATE patients that are educated! They DO NOT want to be questioned, and they fully expect US to believe them hook, line and sinker, without any disagreement. 

Well, even though I did NOT think I had this "sinus infection" I began the antibiotics a week ago, tomorrow. I took 2 that day, and Friday morning I took one. By Friday evening, something was just not right. I could tell my stomach/intestines/colon were not "happy". Of course antibiotics, many of them can upset your stomach. Sometimes if you "eat" with them it is better, but sometimes you are NOT supposed to eat with them. This happened to have been one that still I was quite disturbed over getting. Without being extremely ill with signs of an infection, it still did not seem right I would be given such a broad spectrum, high powered medication. I even mentioned that it had been YEARS since I was given these type of meds. The ONLY time I've taken them is when I go to the dentist and I am having work done. He prescribes "2" for me to take one hour before I go in for dental work. He does that due to me having "knee implants", shoulder implant etc.... Dental work "can" lead to an infection sometimes of those types of implants. BUT mine have been in place long enough now, that really it is not a huge concern. In fact the other dentist that does other dental work on my teeth, says that taking those now is kind of "old school". He does not even prescribe them, unless the implants are very new, less than a year old, or there is major dental work, that could possibly lead to a greater chance of infection. So, even with two dentists right here in town, there are two totally different opinions about giving this even when it could be "slightly necessary". Well, within 24 hours of taking these antibiotics, I began to have what I consider not just slight diarherra, but what I consider a type of "colitis' symptom, due to the medication 'Killing out" all of the needed bacteria in the colon. I went through this in 2010. After several abdominal surgeries, due to an issue with my gall bladder, and a collapsed bile duct, that landed me in the Methodist Hospital in Dallas for over 6 weeks... I got this type of colitis. I will NOT go into the gory details of it all, but I will tell you that I had NO CONTROL over it. I literally woke up wrapped in blankets, cold, and was covered from head to toe with diarrhea... this happened night after night... and I was so ill, I could barely even stand... the nurses would try and put me in the shower, half cold water, and had to clean me up, head to toe, several times a night (and I was NOT eating anything)..I was totally being fed with an IV line...

Well, that experience all came rushing back into my head once I realized that the antibiotic I had been put on is one of the worst for causing this type of colitis.....

Here is more information on it:   http://www.mayoclinic.org/diseases-conditions/antibiotic-associated-diarrhea/basics/definition/con-20023556

this is just one article. There is LOTS more, just do a Google Search if you would like to found out more....

Needless to say, I was very FAMILIAR with the signs and symptoms of this potentially can be "deadly" type of colitis.  It is NOT something to mess around with, especially if you already have a severely compromised immune system. At this time, mine is certainly severely compromised. So, as you or anyone in my situation would do, of course you are going to "question" why would you try and put me on yet another "same family" of antibiotics that COULD be causing this? Here they are as  I have in a redundant way said trying to treat me for a "sinus" infection, and I am worried about this type of bacterial colitis! thus coming back to me on the phone Monday morning and saying the PA is calling in "Keflex" was not what I expected to hear at all. I thought I was going to hear at the very least they would put me on Flagyl or Vancomycin, and then also possibly do the "test" to see if I indeed had this type of bacterial colitis. Never did I expect that she would in an almost flipant manner tell me that "the PA went to school, and SHE knows better"! Well, ummmm let's see here... did I excuse anyone of NOT knowing their job? NO what I was "questioning" was "what she was treating me for and why?"... Are you giving me "more antibiotics" thinking okay well the "sinus infection"??? Yes, again, the nurse NOT taking the message stating THE PATIENT IS CONCERNED ABOUT whether she has a colon problem, a stomach bug problem, or is it antibiotics causing this.... not one word of "can we try to see who is asking what" and "why" one person in an entire office can't put two plus two together to get a proper message through.

Now comes another issue in all of this. For six WEEKS, I have non-stop tried to get through to Humana about the Rituxan, what the deal is, why they are NOT paying as they said they would.... and  you can bet I heard everything but the right answer. Most of the time, I was either speaking with someone who has NO CLUE about a "code", about it being used for RA, or even what it was used for. After I finally drove the infusion center, and my Rheumatologist's office nuts trying to get SOME TYPE OF BIOLOGIC to take.... knowing that each day that passed meant me having more and more change of a severe flare, I worked my fingers to the bone trying to get medication, it was days and days and days and more days of waiting, paperwork, more waiting, more paperwork.... and then FINALLY last Thursday it comes in. I take it about the same time I the appointment to try and get the flare under control, before it got worse.

NOW, every freaking day, sometimes twice a day, and like this morning BEFORE 8AM my time, Humana (wow they really exist) CALLS ME! They leave messages, they want to talk to me this morning BEFORE 8AM, and the "woman" asks for my ID number before she even told me who she was,  or what she wanted. I politely, told her I was SICK, and they sure as heck did not make any connection with me while I needed them, yet now all they do is call day and night with their stupid automated calls, wanting to have me "call" them back"... for what????  there is NOTHING they can do or say now that will "fix" what I did need, when they cared to not even answer me back or call me back.

Yet, the huge looming question remains, how the heck do "we" fix this? Unless you have money, power, people you know.... and whatever else it takes to "get" what you "need" out of this kind of issue.

I am so totally disgusted with all of them.... and as far as how to "handle" any of getting these issues fixed... I am at the place, that I honestly don't see that anything will get better for us... only worse.....

With my "current health" as it is, and NO support from the very physicians that SHOULD be giving me support, I may not be able to make the very trip that I've looked so forward to and that is to go to DC in 4 weeks to give my "story", just so others someday do NOT have to deal with these things. Yet, I can't go if I am too ill to go!

I am so totally and utterly upset over the entire ordeal, that I am to this place that I am ready to give up! WHY! should I FIGHT for something that I have NO WAY of  Winning???? As far as I am concerned ALL of my efforts, ill or well.... sick, or feeling good are all for none.... This battle is just not one to win....

I am not sure I even want to continue to post on this blog, or FB, or participate in any type of organization anymore.... It seems it causes more aggravation, All I see is doubt and dismay in others eyes, and I hear it in their voices and I see it in what they are going through....

For me, I am beginning to feel and see this is a no win situation.... and for others they may have far better luck than I... but I know when it is time to throw in the towel....