InViSiBlE DiviSibIlItIEs WeEK CoMiNg October15th thru the 21st 2023!

 

InDiviSiBlitEis WeEK CoMiNg October15th thru the 21st 2023

New Post for Pseudogout, Blood transfusion, Severe Anemia, RA Severe Pain & COVID Virtual Visits & more...

I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things about COVID, my 2 unit blood transfusions RA, other meds, so many Lab tests, Virtual Visits and more...

More about my Life Living with RA, Lupus, Pseudo-Gout, Severe Anemia & Making My Home Put Together Alone, through the Pain and all that comes with these illnesses.

As I said day before yesterday I CAN HAVE THE STRANGEST MESS HAPPEN AT MY HOUSE!!! 1ST OF ALL I am so embarrassed to even talk about it..I HAD A "VIRTUAL VISIT SCHEDULED WITH MY RHEUMATOLOGIST AT 2:40PM OR 2:15 PM.. THEY SENT ONE THE 2:40 FROM HIS NURSE AND THE APPT. PART OF THE PORTAL SAID 2:15 OKAY as usual between my dogs up & down and the pain in my back & hips, and hands.. I was UP by 3:30AM yesterday morning...Well, I did several things during the day around the house, did laundry, I have even putting things "more in order" rather than scattered around, for instance al of my hand cleaners & sanitizers.. by the way I DID GET MY 2 CORDLESS NEW BLINDS UPAFTER 3 DAYS OVER THE KITCHEN SINK AND THEY ARE AWESOME!!! ANYWAY, I WENT AHEAD ORDERED 2 MORE FOR THE NORTH SIDE OF MY KITCHEN, SINCE INE OF THOSE WERE FALLING APART & I wanted 2 get them ALL THE SAME! So, those were so much easier than dealing with over the sink and around "rotten light fixture that is another story. I also KNOW I have to put up a new light over the sink, because it is so "rotten" where some of the plastic things are they have cracked, and after 14 years, it is just a mess. I spent some of yesterday trying to find one of those that was NOT $$$ of dollars! I also looked for a few other minor things for the house etc... Also I was HURTING LIKE HECK... THE HUMIDITY WAS HORRIBLE & AFTER UP AND DOWN THAT SNALL LADDER WITH THOSE BLINDS, AND THEN WORKING ON THAT DANGED ROTTEN TREE, THEY WERE AND ARE IN BAD SHAPE...Plus I of course have things around the house I can "work on" .. my HAIR is a mess to say the least and since I had that Virtual APPL. with my RHEUMY yesterday I had tried to do "something with it" Well it was about an hour till the computer visit and more, so I decided to it down with the pups for a few minutes, decide on dinner, then it would be time. NOW the fans are going, the A/C Unit is on and all are LOUD.. I had the TV on.. the dogs were right beside me and of course when I NEED them to BARK they don't.. So suddenly I jumped up & I had DOZED OFF & WASALREADY LATE FOR MY APPT!!!! and of all things it was with DR.Q. HIMSELF, AND I RARELY GET TO SEE HIM! I usually see his PA.. I was headed to the computer & to get the program pulled up and my home phones rings! It is MY DOCTOR!!!!! Plus after the call, I found out he tried 2 TIMES ON MY CELL (BUT IT WAS CHARGING IN THE OFFICE & I COULDN'T HEAR IT & I NEVER HEARD THE HOME PHONE THE 1ST IME HE TRIED EITHER... OMG!!! I WANTED TO CRAWL UNDER THE COMPUTER... I WAS TOTALLY MORTIFIED.. NVER , EVER HAD I DONE THAT.. NOW GET THIS.. HEB AND I WAS TALKING ABOUT MY MEDICAL STUFF ON THE PHONE WHILE I PULLED UP THE VIRTUAL PROGRAM THEY USE AND FINALLY ABOUT THE TIME I CAN EVERYTHING SET UP... MY DOG IS BARKING, BARKING AND MORE... & I KNOW SINCE IT WAS JUST IN THE NEXT ROOM in the living room, at the front door MY DR. COULD HEAR IT!!! Anyway, he did say that the program they use to do the visit had problems yesterday and he thought maybe I was having issues..plus he was working "from home" and not the office yesterday. He isSTILL very DISTRESSED over the ANEMIA... & wants to do some other types of blood tests, and he wants me to see a HEMATOLOGIST FOR A BONE MARROW BIOPSY. Which is what I thought also.. he put me back on the Colcrys for the Pseudo-gout.. and he thought "maybe" the "MTX" the Methotrexate I take and have been taking a long time off and on "maybe" making the anemia worse. We talked about some other meds etc, but 1st he wants that bone marrow biopsy. BUT RIGHT NOW I AM EXTREMELY FEARFUL OF HAVING THAT TYPE OF PROCEDURE DURING THIS PANDEMIC! He told me he would find a very reputable Hematologist but I also have to make sure my insurance TAKES THE DOCTOR. AND USUALLY HE LET'S DR. B.; MY PCP'S OFFICE DO MY BLOOD DRAWS, SEND THEM OFF & SEND THEM PCP AND MYSELF.Well he was at home & was not sure about getting the Lab orders over to my PCP's office, which he could send them to me on the portal & I can take them... I have CLUE where the closest Lab Quest is & I am NOT driving to Dallas for it... Quest picks up with my PCP.. so all I need is Dr. Q to give the orders to his office or over the portal.. anything to save me driving somewhere especially right now in a busy Lab office somewhere in Dallas.THEN to top it off after dinner I went outside like I always do and walked around & everything seemed to be 'Fine".. I went back in for about an hour & had my front door partially shut do to the heat but I walk out and my Bird Bath is completely turned over (it is anchored in the ground" even though it is fairly lite) then I see FEATHERS everywhere! Then I walk to the North side of the house & the cat that hangs around was laying in the neighbor's portion o the drive way but nothing like feathers so I figure the bird got away..Well SOMETHING TOLD ME to check the ground to the SOUTH side and look. Sure enough here is the remains of a large bird probably a dove, one wing one place and turn up another part of the bird further down right beside my house!!! Well by Now I am TOTALLY LOSING IT!!!

Several New Clinical Trials Our by "Cure Click"...RA, Diabetes, Fibroids, Lupus, Memory Problems and more...

There are several new Clinical Trials out sponsored by Cure Click... I've been so busy tied up with things around the house especially outside before the cold weather gets here, that I hope after the holidays, I am "back on tract" with my blog, writing, Social Media, book, and activism..,


I've tried to post what is most important, and then I also had "browser" issues. I have decided finally to "switch" to another browser, but I am still not thrilled with it. I guess I was so comfortable and familiar with the other one, after many years, that I've found it difficult when I really have not had the time to learn more about it to feel good about using it.

But the other one, which all of them are memory hogs, was just ridiculous... it was getting to where it was locking up every other moment, and I was having to force quit it and restart it all the time. It was SO SLOW... also... and I have plenty of "memory" as far as that goes, but all of the "items" that browsers "keep", and of course some "cookies" you find are helpful, but the cache is ridiculous at times...

Plus I believe after the last "update" they did, they had some type of virus. It was never as bad until about a month ago, and I got just fed up....

Anyway, I wanted to give you a heads up on these Clinical Trials, many of you maybe interested in them...

There aer still others that are in clinical trial phase also, and the graphics and links are on the sides of my blog... so be sure to check those out also... I will get these up also, as soon as time allows!!!

HAPPY HOLIDAYS AND MAY YOU HAVE A BLESSED UPCOMING 2018!

http://curec.lk/2BZ0myn

http://curec.lk/2C0r6i4

http://curec.lk/2ATu8oS

http://curec.lk/2C22B3R

http://curec.lk/2ABuhAz

http://curec.lk/2xuBRrx

The Arthritis Foundation and More of its Goals for 2015

Cure Click And You! RA Clinical Trial for a "biosimilar" somewhat like Rituxan - Could You be the next "winner" in the clinical trial Race?

TEXAS in the San Antonio and Austin Area will be participating!

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.

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®).

---

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.

For more General Information" about Clinical Trials see this link:

https://share.cureclick.com/r/29oy79A/about

Cure Click - What a Clinical Trial Means to You!

http://curec.lk/1HmayAK

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®).

---

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.

Thoughts on the Arthritis Foundation Visit and the Summit on Capitol Hill, and others that were and are there this week!!!

....  Plus we will be able to get some of those extremely important issues covered like the "biosimilars" (which also is going to be on a state level of legislature also). the business about affordable medications, more from the DOD about our armed service people coming home and facing some of these often crippling illnesses, plus get the Pediatric Rheumatologists more plentiful for the children with Juvenile Arthritis, JRA etc. There are MANY "Eggs" in the basket once again this year, so I am happy to know that I will be an important part to helping to possibly gain more access for patients on medications, get more research and development off the ground, and as the AF says, get to the point that everyone on the "Hill" and not there to understand that "Arthritis is Unacceptable".... I appreciate ALL of those who were able to go to DC. I still am so bummed that I missed it. But, I guess I now know "why" or part of why I was not able to go. My health a huge part of it, plus there were several things I needed to be here at home about already this week, and I still have more. I had the CT Scan yesterday, so as I said in a previous post, I hope they "find" what the problem is. If that can be done, THEN as stupid as it sounds, I think I will somewhat be relieved. I, along with many feel when we go into our doctors complaining of certain symptoms, especially pain in some ways, that if there is not some "thing" they can point it to exactly, that we are not believed as much as if we go in, they do labs, scans and whatever, find something "tangible" to say "this" is what is causing that severe pain... then we feel it is far better received all too often by our physicians, family, friends and so forth. We ALL are all too aware of "silent illnesses" that don't just "show" and even in testing at times those tests are just as good as the people doing them, reading them etc. So, I know for me I just think if they can "pin point" something in my lumbar spine, like I suspect some "compression fractures" due to the osteoporosis, then my doctor will be more apt to "see" that YES I am in more pain and my pump should be upped. But, of if that stupid scan does not give a "bird's eye" picture of something obvious, then will he still take me "seriously"??? He should, he has been my pain specialist now since about 2008 or so. He is the one that got me on the right medication, and then put the pump in when we reached that place in late 2010. Wow, it is hard to believe it is coming up on 5 years since the pump was placed on my right side! Time flies by much too quickly. But, I also still suspect part pf my issue is with my hips. I've had them injected with corticosteroid on several occasions. In fact the last time, both hips were so bad, I asked my orthopedic surgeon to inject both at the same time! He did, and I got better for a long time. So, if the back shows something then I will be "relieved"... and yet if something still seems "off" then I will see about my orthopedic doctor maybe doing a CT scan of them, or sometimes just X-rays are good enough in hips to show the degeneration. Like my hands, thumbs, wrists and feet, and toes. All of that show up in a regular X-ray.

So, I also of course below talked about the issues with my Mom's sister, and it is at the point, that I just hope she hangs on until tomorrow. I am taking Mom their tomorrow, and then we will go to my doctors appt after that.
I just have not gotten a good enough information, that I really know. I am under the impression that when they call in "hospice" that usually means things are heading downhill fast. So I certainly don't want my Mom to put this off ... I think she just has a difficult time seeing my Aunt in the shape she is in, so she kind of puts off visiting,  because of how hard it is on her. But, time is of the essence now for sure. So, no more putting it off, even if I have to drag her kicking and screaming LOL... tomorrow to see my Aunt and Uncle.... Please any and everyone share your visits to the "Hill" with myself and others... I would love to hear from you!!!!

AS YOU Go to DC Next Week to Represent ALL with so many health issues, may WE ALL do our part to BREAKTHROUGH the disparities that hold back Cures...

Well the "day of infamy" is almost upon many of us! That is the packing, preparing, and getting on that flight to Washington DC for several activities going on there this coming week! I believe our Congress will be a bit on overwhelm at times with all of the health activists, Ambassadors, Volunteers, and many that will be telling their own personal story about their chronic illnesses, the different disparities and challenges they face, some daily, and how much more we need in research, in new technology, new medications, more specialized physicians, of course which all take lots of dollars to be able to fund some of these extremely needed actions. Life is already a huge enough daily challenge, to work, take care of family, kids, go to college, and participate in the "daily" life of living. Then you add on top of that, chronic illnesses, chronic pain, being unable to get the doctors and medications you need, further more possibly not being able to even get a "real and proper" diagnosis FIRST so you can receive the treatment you need. The amount of "challenges" that those of us with chronic illnesses face, especially when the diseases are often arthritis, autoimmune, or both, and we still have so many UNANSWERED questions about these illnesses. Are they genetic in nature? Is there something on Earth, in our water, food, land, air, that is causing so many more of us to become ill with these chronic diseases? It is almost unbelievable to actually think about the growing numbers of those (and especially once again women) at an alarming rate being diagnosed with autoimmune, autoimmune arthritic, arthritis, FM, CFS. MS. Myasthenia Gravis, and then the other "ailments" that follow along with these "main illnesses"... brain issues, heart problems, lung problems, bones, joints, spinal issues, and then with Sjogren's the "dental" problems that are so very severe so quickly, that within months, like myself you find you are losing every tooth to this horrid disease, and there is not a thing to do about it, but have dentures. You cannot stop it or even slow it down. I tried. I was meticulous with my dental health, always had been. but, even as meticulous as I was, also using the couple of medications available, along with keeping my mouth moist, chewing sugar free gum, you name it I tried it, yet I still lost ALL of my teeth in less than a year to Sjogren's. So, each and every person, whether you get to go to DC this week and tell your story, or you are sitting at home, possibly too ill to attend, and you do your "advocacy" work from your computer, you send emails, you send snail mails, tell your own elected officials, and not just "federal" but our STATE Officials, and even Local governmental officials need to be a part of this growing, ever enlarging issue of autoimmune illnesses, and rare diseases. All also goes along, with people getting the help they need, so they can afford their medications, they can afford and be seen by the proper physicians, they can afford the surgeries, or whatever their treatment needs to be, even like myself, trying to PAY out of MY POCKET over $15,000.00!!!!! cash for my dentures to be put in properly... there are not many people around with that kind of available money to spend in one whack at a dentist! THIS NEEDS to be PAID FOR MY HEALTH INSURANCE! IT is A HEALTH PROBLEM, NOT DENTAL THAT CAUSED ME TO LOSE EVERY TOOTH!!! But, we ALL need to stand up and say NONE of this is RIGHT, NONE of this is ACCEPTABLE, WE should have the medical, dental, eye and more CARE of PROFESSIONALS and experts that can help us live somewhat of a normal life. The ALMOST INTRACTABLE PAIN I've been in over the past week, SHOULD NOT BE!!! I SHOULD not have to wait, I should have been able to have my medication UPPED the next day, not a week later! I HURT! I HURT to the point, that it's stopping me from doing what I love the best, my advocacy, my writing, my helping others.... my taking care of my own home, shopping. and helping Jim and my Mom... ALL of this is just WRONG! AND ONLY YOU AND I can MAKE IT RIGHT! So, for ALL of you whether you will be in DC next and able to "stand on the steps of the White House" as I used to say, and plead my own case and the case of others that could not attend, or if you are home, and not able to attend you still MATTER! YOUR VOICE will STILL BE HEARD! We must RING OUT, CRY OUT, and say ENOUGH IS TOTALLY ENOUGH! WE are one of the MOST INTELLIGENT NATIONS in the entire WORLD! There is NO REASON that our incredibly talented researchers, doctors, professionals in these fields can't find solutions, but they need funds to get these types of things running and off the ground. Again, I wish ALL next week an incredible and memorable trip to DC. May your voice RING true for all of us... from patients, physicians, family, friends caretakers... researchers... may we FINALLY BREAK THROUGH the "thick headed" thinking of some, and get brilliant things accomplished! As tears roll down my face, I beg of all of you to stand up and tell your story... to stand up and tell a story of a friend, family member.... stand up and be heard!

Dealing with Aging, Chronic Illness and Another Birthday today!

All of us have to deal with aging. It is just a fact of life. If we are here on this Earth, we naturally are a tad bit older each day.

I am dealing with my 55th birthday tomorrow, Sunday the 15th (almost a Valentine's Baby). I always have a difficult time dealing with how quickly these birthdays seem to come around. It feels like I just celebrated one, and here is another one popping up.

When you have a chronic illness (es) and/or are living with chronic pain, I feel you have more of a feeling of "desperation" as the days go by. It is of course a known fact, if you are chronically ill, with just about any type of disease, that can lessen your life span depending on which illness, and how well it can be managed.

So, with someone such as myself, dealing with Lupus, RA, Sjogren's, already having two heart attacks, etc. the possibility of me living my life out to my 90's or less can be something that you have to admit may not happen. No one wants to think about growing older, and then passing away. We have so much LIFE to live, none of us want to check out of the life hotel, before we have completed all of the things we want to. Maybe it is to see your kids, grandkids, and great grand children grow up. Maybe you have things like myself, a blog, a book to write, people to see, family that you of course don't want to leave, and hobbies, activism, volunteer work, traveling, just the daily parts of life such as they are. with Autoimmune Illnesses, days may not be the greatest. You have some that are full of pain, and you would prefer not to deal with. Yet, you usually would rather deal with the pitfalls of chronic illness, than the opposite, which would be to pass onto another life.

I didn't get to finish this post yesterday, so I will finish it off for now with what I have written on Facebook this morning. I am so fortunate to have so many people around the globe that lift me up in faith, hope, and prayer... and I want all of them to know how much they mean to me.

This has been such a wonderful day so far. Other than waking up early this morning with a freaking horrid headache, that then upset my stomach as usual, I am having an incredible birthday! I went yesterday and got 3 shirts and a purse at Beall's for less than the price of the purse itself! I had a gift card from them for my birthday, plus some other good coupons. Then Mom and I stopped at the Dairy Queen and got burgers and fries. I brought ours home, so that was Jim and I's Valentine Day special. :):) Mom gave me a beautiful card, and what she wrote in it brought tears to my eyes. She has always been here for myself and for Jim, especially after the accident. Then Jim's Mom also sent me a card, and money! :) I had ordered something on Amazon that usually I never would have even tried, but it came in yesterday and they fit perfectly! I got 5 new bra's in the colors I needed for like 25.00! Plus Jim gave me a beautiful new robe this morning!!! I needed it so badly. I was ashamed to even wear my old one, it was definitely worn out.... then I got a call from Amanda Batson- Matheny​ and a bit later from my son Jason Harber​ which made my day to hear their voices and have them call was a wonderful treat... I also went and got us "no-no's" as I call donuts... we have a place just a few blocks away, and I could sit there and make myself sick, eating them. They are so good!!! :):) We were supposed to head to Winstar today. But, the weather is supposed to begin getting lousy today, and it is already really cloudy, and we are expecting a high chance of rain today and tomorrow, plus colder temperatures. So, we decided to wait to go the the Casino when the weather is a bit better. Driving in rain does not bother me if it is not too far away, but being with the idiots going through Dallas in the pouring rain, is not my biggest thrilling adventure! So, the rest of my day will probably be just relaxing with the pups and Jim. Probably going to watch a movie or two, and other than that, try and put all of the "everyday" worries aside today and not think about all there is to do, errands, running here, there and yonder... but just have a day of peace with these 3 I have so much joy with ... the pups can make us laugh no matter how lousy we feel, or how badly the day goes. Bubba Gump will raise up on his hind legs, with his front paws down in front of his face... and those big eyes just saying Mommy, rub my tummy... or the way he loves to watch television and movies. Tazzy, bless her heart, can still do some things to make me laugh... but she is really beginning to get a bit "feeble" in so many ways. She is I believe 11 years old. Jim gave her to me as a Christmas present while we were living in Seattle. That was the Christmas of 2004, because she was a year old when we got to TX. So, time has also flown by with her. It seems just yesterday, I was visiting her, with her brothers and sisters, trying to decide which puppy I wanted. She came running to me, not bigger than my hand... then ran over to Jim and began to give him kisses. From there we knew she was the one!!!! :):) She was not even old enough for me to bring home. I had to wait a week, and she got her last puppy shots, then we picked her up the next Friday night, just before Xmas. Life has just passed by so extremely fast. Day will have passed away 10 years ago on the 27th of March. Mom will be 80 in August. And Jim and I have been together now for 12 years, and will be married in April 10 years. I would not have missed one moment ever so far in my life, and I am so very fortunate to have family, a spouse, two pups, and so many friends to keep me from going insane at times. You each bring something special to my life, and even if we never were to meet in person, which of course many of us might not, you are still as much a part of my life, as if you were right next door... thank you... each and every one of you, for giving me strength, courage, hope, faith, and on the right path in life... I am blessed and overflowing... Rhia

Always Looking for the Sunny Days even though the Cloudiness and Fog hang Around... dealing with symptoms...

Okay, well I've missed out a couple of days dammit with this stomach mess. Not sure what is gong on. But, I do KNOW I am SICK of it! I am a bit better today so far. I've tried to not drink or eat anything I think might be causing it so badly. The vertigo just has to run its course usually then gets better. What I am concerned about, is why this time it is so bad, and why the meds I take for it are not calming it down as usual. I am still doing some research myself and I am sure since I am honestly WAY OVER DUE for A scope to check out my esophagus and stomach, that will probably be where I am headed. I know I have Barrett's Esophagus. I really should have had it scoped again over a year or more ago. But, with everything else, I keep having to postpone it. Now with all of the problems I have, I am concerned if the dysplasia, where my actual stomach lining grows out of the stomach and into the bottom part of the esophagus, and can cause cancer. But, I just dread any other "surgeries" etc> I am so literally sick of doctors, medications, insurance, pharmacies, no one can get their crap together. I've had an ulcer before thus one of the reasons I am on Nexium, plus of course GERD. but even the Meclazine I take for nausea and the motion vertigo. It just seems what ever is going on, still to me is totally separate from the Lupus, Sjogrens and RA. One good piece of news! MY ORENCIA FINALLY CAME IN today! After being off of it for at least three weeks, I feel may have some to do with how I've felt this past couple of weeks. When you begin to research Lupus, Sjogren's, RA, FM, ME CFS. and any and all of the other AI illnesses from MS to Diabetes 1, there can be a million symptoms, all of them similar, and they may or may not have to do with the autoimmune illnesses. Of course the problem I can already tell from that is patients (meaning us) and our doctors, whether PCP, Rheumatologists, or other specialists, tend to get "lackadaisy" and "automatically" no pun intended blame it on Lupus, RA, and so forth. So, each time a new "symptom" arises, all too often I feel it is kind of "'blown off" as to whether there is something "new" causing the new symptoms, or is it indeed the AI's. I realize that is is very difficult, and in some cases probably almost impossible to defer one from the other. Even with many types of tests, lab work, studies, and so on, still there may not be an "answer" other than due to one of the AI. That is scary though. What if, and I am just "saying" what if myself, or anyone with stomach issues and the nausea, vertigo and so forth left it unchecked, and went on either with the doctor knowing or just figuring on our own, it was "just the AI" and more symptoms, and it was something worse? What if it were stomach cancer, or some type of other cancer such as leukemia, or the GERD had really done a number on my esophagus and that dysplasia is much worse than it was. Or what if it is yet another autoimmune illness, or any number of other chronic diseases that can start out with the exact same types of symptoms. So, even though none of us want to jump the gun per se', running off to our doctors each time one little thing pops up or changes, plus we are all in the place that, oh well, they will blame it on the Lupus anyway, yet something else that may need other treatment, surgery etc done. A great for instance was my double hernia's early last year. I was told by three different doctors those "lumps" were nothing to be concerned about, and they more than likely were not hernia's. Then I still feel uneasy, so I go to a surgeon, who sure enough says right off it is not just one hernia, but I had two... one on each side...So, had I listened to those first 2 or 3 medical doctors who just seemed to not want to really find out for sure, they blew me off. Then I do find out I have hernia's just as I had suspected all along. We for the most part, have a "gut" feeling, again no pun intended, about our bodies. For those of us with chronic illnesses, we especially tend to watch out like a hawk for any type of new symptom, or something that seems to be "off" and not quite right. Yet, often times I know for myself, I go into the physician's office, and I just feel like if I am going to get the same old answer, it is the "Lupus", "RA" etc... then why... and if it isn't or they feel it may not be, then here goes the 50 "shades of Testing" that runs up expenses, and takes away our precious time. Even with many new tests, there still may not be any "one" answer, if one at all. I have found that even with the double vision, that started so suddenly out of no where, and has gotten to where I have it all the time, unless I wear my corrective glasses with the prisms in them, I have constant double vision. Some of you may recall the entire ordeal I went through for at least 6 to 9 months or more. I saw 2 or 3 different eye specialists, a couple of different neurologists, my Rheumy, my PCP, and in between I am sure probably someone else. I also went through exam after exam, test after test, loads of blood work and even a "biopsy" on my temporal artery. The specialist felt I had temporal arteritis, and it did make sense. But, the very treatment for it was something I was already taking, just not in as high of a dose as they use on that illness. So, I also found out the biopsy comes back all too often "inconclusive" thus I may have had it, but they didn't really get the exact YES, but it was not "negative" either. It took months and months, a couple of different pair of glasses, and just all kinds of neurological testing. One of the Neurologists said he felt I had Myasthenia Gravis which is another autoimmune disorder, and that will cause the symptoms I had and also explain where and why they were showing up at that time. Yet, still there is no one exact science about Myasthenia Gravis either. Just like MS, which I could have also, still there is one test that they can do, and again it is not always "exact"... It might be negative, and I still have MS, or I may show up positive, and be negative in reality. So, as we hold hands, together one next to the other, remember for one, you are never alone... there is someone out here, that can empathize with you, and totally understands because they are also experiencing some of the same things, whether it be illnesses, or any other number of other explanations. You can bet money on that there are one or usually many more of us with the same situation. Gosh, I can count on my hands, toes, 50 times over at the number of people who have been down almost the same road as I and the rest of us have. I've managed to feel "well enough" today to get some cleaning done, baked a lemon pound cake, did some other cleaning here there and yonder, vacuumed, and even colored my hair (of which I am not thrilled, it is way much darker than the last time I did it with the red).... but I also know it will fade out pretty quickly, and then won't be so very deep red... the color I used before came from Avon, and they quit making the product line! Plus I didn't keep the number or part of the box so I could try and match it up and I picked what I thought would be close, but it is still much deeper reddish/almost maroon than I expected.... so I hope maybe, my stomach is settling down, along with the stupid headache. I need to run errands and get to the market tomorrow, so I need all of the "wellness" I can get hold of for tomorrow. It will be one of those busy days. Anytime I head to the market and have a "list"... a long list, and then coupons, that means a longer trip that runs into hours if I have lots to stock up on and to use coupons on....

Lupus, RA, Sjogren's and Vertigo, Nausea, Odd smell and/or Taste

I've been "under the weather" for some reason the past several days. I've had a bad bout with my "Vertigo" and this one seems to be worse than some others. I've been so nauseated, I can barely get off the sofa. Everything smells "odd" to me, and even things I usually enjoy eating, now just taste off... sometimes so bad I almost am sick just smelling it cooking. I've also had a headache off and on with it, and my head just swims even to the place this time my "body" in itself does the movement ordeal again. I've researched just about everything I can, and in any way I can to try and find out some way to pin point whether this is a "stomach virus" or is it due to the RA and Lupus. along with that fact is also I've been going on three weeks without my Orencia. So, I wonder if that lapse since the pharmacy and the insurance could not get their stuff together. Hopefully tomorrow it is supposed to come in... yet as I said, I'll believe it, when it is here and I see it! It has been one red tape mess, after another trying to get all of them to get their heads out of their butts, and get things rolling. Even after they got EVERYTHING that they needed, I STILL had to CALL THEM MYSELF this morning to ensure they DO mail it out!!! It has just been a nightmare, and what is worse is I feel maybe the Orencia has not been doing such a great job.

I also have to question whether this is totally something else, and not actually Lupus/RA related. Since so many things can happen, and especially after having a compromised immune system, I never know what the heck will happen and when it won't. I just hope to find myself much better tomorrow. I've been so bad I haven't really been able to sit much here on my computer and post much. I hate leaving everyone without a fresh post daily or more than one!!! Bear with me, for I hope tomorrow shall be a better day....

RA, Lupus, Sjogren's - New Symptoms? another Illness? and even the thrill of "Good Stress" can cause a flare...

Life continues to buzz by faster than a speeding bullet, and faster than a rocket. I hoped 2015 would begin anew, and slow down a bit to allow me a breath or two. After 2014, and ALL that I, along with family went through, my main hope for 2015 was to be more "well" physically, mentally and emotionally. I hoped life would "slow down" to a bit more of a sprint, rather than an all out marathon race, and with that would also come a bit of respit from so many bills, my teeth, Jim's accident, attorney's stuff, going to all of the doctors, and again we could see the light of dawn, after such a black ink darkness of the past year.

It's not that things have been "bad" as of yet. Although the first of every year brings another set of stressors many of us have to deal with. If you own a home or property, like myself, you probably owe property taxes by the end of January. Like many, my house insurance is usually due about that same time, along with income tax filing for many, worrying about a brand new insurance for my Mom and myself (we changed from Humana Medicare Advantage over to United HealthCare HMO Medicare Advantage plan)... and I knew there would possibly be a few kinks in the entire change especially for me, since I have so many medications to have filled. Of course all of that had been resolved with Humana over the several years I had it. In fact, I guess I had Humana from 2006 forward up until this new year 2015. I had finally narrowed down most of their stupid hoops that myself and my doctors had to jump through. So, as I knew I am having to go through a few red tape situations in order to get my medications refilled.

I am also dealing with something involving my stomach. I am not sure exactly what the issue is. I realize that all of the medications I must take daily, does not help at all. Yet, I've been taking the majority of them for years now, and as long as I take my Meclazine for the vertigo issues, I rarely had severe nausea issues. Over the past 5 or 6 months, it seems I am nauseated more than not. I am even taking Promethazine and now having to take it daily. Part of it, I am sure is stress. Stress over my own illnesses, medications, bills, and what needs to be done. Stress over Jim's health situation and knowing there maybe many things we come to have to realize that he will never be able to do again. A piece of me truly thinks that many things like driving, walking a long distance with just the cane, doing most things are the house chores, especially anything to do with finishing up the remodeling, laying floors, painting and so on. His balance is still so "off" that there is no way he can stand on a ladder what so ever. He can't keep his balance for very long at a time now. As much as I want to believe it will get better this year more; since it will be a year in March on the 26th since the wreck happened, I just don't think that any more time will make him any better doing some things. As we have both learned since his accident, balance is almost more important to "life" and what you do every day, than walking, running, picking things up, getting on ladders, bending over. Even riding our exerciser which is kind of an "eliptical" one, we saw immediately it was his balance that really through him off to the place I have to stand beside him in order for him to ride it. So, strength at times is not as huge of an issue is the balance situation is.

Along with this almost daily nausea I am having, also comes a fatigue that can at times be worse than my experience with it through the years since being diagnosed with RA, Lupus and so forth. For about 2 or 3 years I didn't sleep much at all. I was up and wide awake by 4 am at the latest. Then all of a sudden, and we are staying up a bit later, but here lately I am not waking up until 7:30 am most mornings. So, I continually feel I am running behind. When I was getting up several hours earlier I could get more accomplished. Now, by the time I am up, and turn around it is 2 or 3 pm. The days just seem to be going by even faster than last year. I also know that with the RA, Lupus, Sjogren's and so on down the list of my health issues, my stomach issues could be taken as a part of those. Severe headache, nausea, the fatigue... the muscle pain, and joint pain, all sign and symptoms of most autoimmune diseases.

Yet, you know how you feel at times when you just "KNOW" something else is going on. I can't explain it, but whatever is going on now, seems to be "different" than the symptoms of what I've been diagnosed with.

For one thing, I've had an "extra" beat with my heart now for a long time. I never really was concerned about it. My cardiologist knows, and she has me on medication that keeps it under control. But, a few days back, I had a new type of happening. It was like my heart would be fine one moment, then it wants or feels like it runs really fast for about 4 beats, and then goes back to "normal"... it happened through out the day one day last week. In fact I was so concerned about it, I had called my doctor. She could have see me the next day. Then I woke up with the most severe headache, and fatigue, with the nausea so bad, I had to postpone the appointment. I actually have one with her on the 13th of this month, so I decided to wait until then, unless it happens again before my appointment.

I had came across a story about a woman that was born with a heart defect. They found it when she was 3 months old. For many years, it was under control with medication. When she was in college she began to have problems with it, and later when she was about 39 years old, had to have a heart transplant. It was truly an inspiring story, yet some of her symptoms that she had really blown off as nothing were exactly the same thing I've been feeling. The severe fatigue, she was having bad headaches, and being very nauseated, plus noticed shortness of breath. Well, I had been noticing over the past few months that I complain about sometimes feeling like I am short of breath. I also passed it off as nothing, until I read her story. Now, the one reason I would think it could be heart related is for one, all of the AI illnesses can effect the heart. Two, I have had two heart attacks already. So, that kind of caught my attention, as I was trying to piece the puzzle together as to what is going on with me. Honestly, I have preferred to ignore it. So, other than some "Google" research, I have tried to put it out of my head.

There are way too many things on the agenda I need to attend to, and having some type of heart issue, is NOT what I want to deal with at all. Of course, I realize no one wants to think they might have something going on with their heart. But, what I do have to face, is that statistically I am more likely to have problems, than those without AI illnesses, and/or that have not had 2 MI's already.

Of course, I've received the honor of being able to travel back to Washington D.C. in March, for the "Summit on the Hill". The Arthritis Foundations Annual Event, where we go in as patients or patients families, and tell our Congress People about our stories, and what we want to see accomplished to help those out there like us, that may not be able to actually tell theirs like that. I went through the whole year last year and made "Platinum Ambassador". So, that gives me the opportunity to get the "grant" from the Foundation that pays for my flight, lodging and just about everything other than "personal items". So, that being said, and also as I began this, I am totally elated at the honor of getting to go back again this year. Yet, it brings on a whole new agenda of "good stress", honestly. I've got to be concerned about driving my own self to DFW, which is about 65 miles or so from my home town. Parking in long term parking, getting myself to the proper place for my ticket, going through all of that nightmare, and then getting to DC in time for Monday mornings first meeting, which is at 10:30 am. So, thankfully I do get to fly in on Sunday!!! They confirmed they would cover an additional day for me to come in, since I am flying from a fairly long distance away. But, even with that, trying to pack where hopefully I won't have to check a bag, getting their, settled in, and then having to fly out on Tuesday evening, AFTER our last part of the day on Tuesday. So, again that makes for a very long flight home, getting into the airport back in Dallas very late. Then driving myself back home in the wee hours of the morning from DFW. Fortunately, maybe traffic won't hinder me either way.

I've also got the "stress" about my birthday on the 15th of February. Of course it is much better to at least "look forward" to having one, rather than NOT looking forward to it. Yet, to know I will turn 55 years old in just a couple of weeks really terrifies the hell out of me. As my Mom and I just talking about it. How quickly the years have seemed to pass by. How it seems like just yesterday my kids were born, or I was little and having my birthday parties, and all of those years of youth have just melted away like a molten river of lava down a steep hillside.

We (meaning I) at times became complacent in life. I guess in our younger years, we are so entirely engrossed in jobs, school, college, kids, homes, bills... and everything we incur and that occurs during our robust years of a more youthful time in life. So, we turn around once, look in the mirror to see a young adult making their way through this place we call the world. As we make another turn, it seems the decades have past us by all too quickly. Then if you happened to have came into a life of some type of chronic illness, whether it be cancer, or an autoimmune illness, heart problems, diabetes, and many other conditions that can crop up in the blink of an eye, we begin to want to look back at what "we" did or did not do to cause this. Then all of a sudden, classmates we graduated with lose parents, or worse the classmates pass away. Nothing "stings" quite as badly, as finding out someone who is YOUR age suddenly has gone to be with others in heaven. That one can really stab you where it hurts. It is definitely a wake up call.

So, with all of that comes the "what ifs".... what if I had not married and went onto nursing school? What if I had completely finished my 4 year college degree? What if I had stayed in California, or Seattle? If I "had" or "had not" done certain things, would I not be suffering from the ties of disease that bind me now?

I find myself with way too many questions in life, alas not nearly enough answers for them. I feel often "less than" because I honestly don't have the energy and stamina to "do more", "be more", participate more. What if I could still go snow skiing, on more trips and vacations, and was not so tied to the strings and arrows of chronic pain and illness?

Then I actually witness someone more than likely as ill or if not even more chronically ill than I am, and it appears they can get more done. They do have the stamina, strength, energy and wear with all to withstand and write best selling books, or poems. Or they do much more in their activist advocacy activities.

I have PROMISED MYSELF, and to my very BEST that I CAN do INTEND on completely finishing my BOOK by the end of the year and having it published. That is where I stand, and my stance is. If that means "robbing spoons" from other daily things I do, then I need to learn to manage my time wisely. Putting MORE of my "spoons" into the writing of the book, and taking some time away from things such as Facebook, plus other items I tend to do, rather than writing.

I WILL always be posting here... and never will I allow myself NOT to continue my blog. It is truly my LIFELINE to ALL OF YOU! And it is for ALL OF YOU that I WRITE THIS NEXT BOOK!!! For myself also, but more for all of those out there struggling through the mysteries of life, and the good, bad, really bad and depending on someone to help guide them through the darkness of despair over chronic pain and illness.

You see, it is NOT just our physical bodies that are so terribly effected by these chronic diseases. It is the very core of our being, our hearts, minds, soul, family, spouses and friends... so it is a journey that is to terribly long and difficult to deal with to feel alone in doing it.

So, today... I dedicate each page of the book I am writing to YOU!!!!

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

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

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

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

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

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

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

The Arthritis Foundation and Our "Victory" from the 2014 Summit!

I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!

http://www.arthritis.org

It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!

PLACES I FOLLOW IN MY TWITTER - "Twitter" Hashtags...

As our "methods" of finding information online, or passing information around online continue to evolve, it is sometimes almost impossible to keep up with what everything means... we now have "twitter", and also "hashtags", we have Facebook groups, pages... we have Pinterest, blogs, Linkedin, we can "follow" some page, group, non-profit, we can be volunteers, Advocates, Activists, Ambassadors, we can be the ones ill with chronic pain, chronic illnesses, and the thousands of online sites you can get to for information about everything from doctors, medications, Pharmaceutical Companies, we can find kin folks, friends, classmates, ancestors, family trees, online books, online instructions... we can order online & get things in email, or by "snail mail", or pay bills online and have it in "real time" post to our accounts.

Our "daily" online world changes what seems like every moment. If something happens in a country thousands of miles away, we can know it in an instant. We can save hundreds of thousands of lives in knowing about large storms, violent eruptions, medical history in the making, watch surgeries online, watch directions of how to online, see our friends and family online, talk to everyone online.





I find I have a difficult time keeping up with exactly what some of our newest "ideas" mean. About the time I "almost" figured out Twitter, and hashtags, then this new "hashtags" main came out, and I am trying to figure out the proper way to use them. It seems they can be an "instant link" to every "search term", site, Facebook page, everyone on Twitter... technology in the making when you breathe in and out, something new has happened. So, I am "listing" some hashtags that you might find useful in a general sense of your searching for different things.

I will add to this list as I go along. In fact I may put this into a different "page" so it will be on top and available for you....

           
#AARDA

#Chronicpain

#sjogrens

#partD

#RA