Showing posts with label #WEGO. Show all posts
Showing posts with label #WEGO. Show all posts

Friday, July 31, 2020

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 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!!!

Saturday, December 3, 2016


The WEGO Health Patient Influencer Network is made up of thousands of health activists who are all working hard to raise awareness for their condition area. The people in our network are making their voices heard and we're here to amplify those voices by supporting them with amazing opportunities.
We created the WEGO Health Activist Awards to:
  • Recognize patient influencers who have become leaders among leaders
  • Connect patient leaders to each other, across conditions and platforms
  • Give a big "Thank you!" to all the leaders impacting lives
Many times, these hard working individuals go unrecognized but we believe these individuals are the innovation of healthcare and deserve to be celebrated for the change they are creating.
We celebrate health activists across all condition areas and with 14 award categories, there is something for everyone!
So support your favorite community leaders by joining us for our Awards Week celebration, December 5th-9th, where we will be announcing our 14 winners and hosting a week full of tips, tricks and tactics to improve patient advocacy efforts.
Be sure to check out all of our 2016 nominees- it’s no wonder these awesome activists were nominated!



Here are the schedule of Events for the Annual WEGO Health Activist Awards!

Prizes, Fun, Support for WEGO Health and ALL of the Advocates and Activists that make this event, AND WEGO HEALTH MOVING FORWARD TO CONTINUE TO HELP ALL OF US, THE PATIENTS!

Monday, November 14, 2016

WEGO Bloggers Challenge for Saturday 12th - Time to "get real" with your doctor


Well for one, I am sick and tired of doctors thinking that just because I patient may do research on their illness(es) or look things up, I cannot fathom a doctor getting upset or calling a patient a "moron", Layman, and telling them "you do not know what you are talking about".

I agree there is a OVER ABUNDANCE of some really ridiculous information online for everything! Not just the medical field, but just about anything you want to search for.
One has to learn how to "think" about what you read or hear when it is NOT a specialist, and try to weed out what really is silly, or does not apply to your case.

Plus for myself, when I go into my doctors offices, and ask questions or tell them about something I've read online, often times "most" of my research, is usually almost right on target. Not always, and I have one physician that LOVES and "educated patient".

But, one is a complete jack-ass to put it like it is, he ignores anything I have to say, he tells me I am basically stupid, and leave the "doctoring up to those who do have the "knwledge and education" to do the "medical work".

I SO would love to tell him, that I have been to "some so-called" doctors, that not being narsaccist but I KNE more than they did about some things. When you are chronically ill, many of us DO KNOW more about our conditions than doctors. WE KNOW our bodies, we know what feels right and what feels wrong. We understand the articles, even bloggers posts we read, and they also know many things our physicians never are even taught, especially about autoimmune diseases. My own pain doctor will admit, that I know more than many medical workers, including doctors, nurses, PA's, and NP's when it comes to my own conditions, because I do research things, I do decipher what is "not right" and what may be deemed something critical in my situation.

I would love to tell every doctor I have been to and others, that they NEED to be EDUCATED MORE on autoimmune and rare illnesses, because in many cases now, WHAT WAS RARE, is NOT that rare anymore.




Tuesday, November 8, 2016

WEGO Health Blogger Challenge 2016 for Day 8 "I think I I can" OR "I Know I CAN".....

WEGO Bloggers Challenge Day * 2016 - "I Think I Can OR "I know I Can?"

I "think" I can get over the "hump" of losing my Mom so suddenly, and find a renewed life ahead of me - I need to give myself more time.

I think I can get my home fixed up and it be everything I want it to be.

I think I can get back into my writing and blogging, and make my 3rd BOOK a "Best Seller".

I think I can finally face my cervical neck surgery, and my lumbar surgery and they will relieve more of my pain.

I think I can walk through this life, even with all of the medical issues that surround me, and continue to find people that care about me, I think I can find new friends, and move past all of the loss, of not just Mom, but the loss of a relationship, find understanding, the loss of my dear Tazzy, my Pug, who I still miss daily, and move past the emotional pain that continues to dwell within and make me feel as if all I've seen in life is loss.

I think I can do MUCH of the "renovations" to my home, myself, and then "face the facts" there are some things now, my body no longer will allow me to do.

I think I can become a much better activist, advocate, volunteer and "voice" for those who suffer from such horrendous chronic illnesses and pain.

I think I can live my life alone, with my pups, and find the place where I no longer feel "alone or abandoned".

I think I can continue to make great decisions about my future, and continue the path of knowing more about medical research, chronic ailments, and give others hope through my own research and going through what I have been through. 

"I Know I Can!"

I KNOW I can go back to Washington DC one day, and give Congress once again my own life's issues with chronic illness, chronic pain, and how many of us suffer horrendously, and make A DIFFERENCE!

I know I can find more time to write, to work on my painting, my quilting, my gardening, and be able to get on the path, of feeling good about myself again.

I know I can LOVE, my Kids, Grand kids, and family even more every day. I know I can show them that they are my entire world. 

I know I can get these two pups to QUIT peeing in the floor when they are upset with me!

I KNOW I can continue to make this journey through life by myself, take care of myself physically, mentally and emotionally, and gain more insight to myself in the process.


I know that although sometimes others do not say it, they are proud of my "charity" works, and I will learn that I DO NOT have to have a pat on the back from anyone else but myself.



I know I now can face my own "day of reckoning" when that time comes, whether soon, or decades from now, and I am NOT frightened. 


Tuesday, September 1, 2015

WEGO Announces - The 1ST Annual RA Blog Week coming up the week of September 21 - thru September 27!

WEGO Health and the very 1st Annual RA Blog Week!

To find out more about how to participate and have your blog included see the URL:

Here is more information about RA Blog Week!

This is such an honor! A great way to help others, and find out more about others also!!!!

About #RABlog Week

About #RABlog Week

Saturday, June 20, 2015

Medicare, Disabilities, Chronic Illnesses, Chronic Pain... and going through the "hoops" to get the help we need...

Morning gals and guys... or guys and gals, however you want to put it. I realize I've been almost "quiet" the past couple of days, which is not like me.

I've been doing several things, from continuing on my spring/summer "cleaning"... believe me when I get into one of these moods, if it is not "nailed down" it may just get thrown away, given away, or whatever... but it will not stay in this house for sure.

I do this about 2 - 3 times a year. I guess we all have a certain "time" that we decide it is time to "junk away"... I am not a "hoarder" by no means. But, I do believe in hanging on to some items, knowing there will come a time, I will decide I need a certain item.

So, like many, I have a "guide" I go by. If I have not needed it, thought about it, worn it, looked at it... for OVER a year or a bit more... then it's time to either get rid of it, or decide to use it in whatever way I intended.

I don't like to be one of those who hangs onto every plastic butter bowl, or every coffee can, or old towels, sheets, or even clothes. Usually on my clothes, I have a few tops I wear around the house daily. They are probably not really fit to run to town in, but okay enough for around the house. Then I have some I wear for everyday errands. Those I wear to run errands in, to the market, to Wally World... and when they get to the place, they are looking kind of "not all that great", I use those around the house, and by then it is more than time to "chunk" away the other old house tops. You can bet by then, they are stained, probably are beginning to have a few tiny holes in them and so on.

As far as my "dressy"... more go to the Casino, out to eat, or something else ... that I feel I need to dress up for... again, I go through them a couple of times a year. If I have not put it on, thought about it, even remotely considered doing anything in it, then usually it goes to Good Will, if it is still in good shape. I try my best NOT to have LOTS of stuff, that is totally NOT going to be worn here in my closets. Thus, a couple of times a year during the season changes is a great opportunity to take them and let someone else get some use out of them. I do the same with magazines, books, and the like. If I can "reuse", then I do... if I can give it to others to recycle, reuse, etc... I do... If none of those sound feasible, then usually it goes over to "Soul's Harbor"... which is a store, that everyone does the same. Whether clothes, furniture, dishes, you name it... and you don't really want to throw it out, then we take them there. You can get a receipt for a tax write off, but I don't even worry over that. I always tell them, if you can sell it, or whatever... great, if you cannot... the get rid of it however you do....

Okay, so I've been in the middle of all of that stuff, along with getting rid of 2 old computers, an old desk, some speakers, and just some "general" stuff that rather than let me hauled off in the trash... we have a couple of people that come around and pick up some items, especially if there is any metal in them... they sell it to one of our "steel" businesses here. That way those thing get recycled, the guys can get a few bucks out of them, and that means less waste in our landfills for sure.

I know my family gets tickled at me. I can find some real "odd" uses for some stuff, but when I finish, they are totally amazed. A few years back, we had a pretty good sized tree limb come down. IT was pretty straight, and fairly thick. It was also long enough, in my head, I could see it cut into about 18 inch long pieces, and make flower arrangements with them. So, we cut them in a couple of different lengths. I went around my house and found some of my silk flowers, then went to our "Dollar Tree" and picked up a few more, and 'voila', I had three beautiful flower arrangements, at that time for Christmas!!!

I had one for my table, one of the office and one for the living room! Between some left over ribbon, and lace, a few silk flowers, some floral wire... and a bit of imagination, they appeared to be something you may buy at one of these "DIY" sales, where people sell their items they make. Then I got the idea, I would change them for the different holidays. So I had some flowers and things for Valentine's Day, Memorial Day, Easter... Thanksgiving, and one year even St. Patrick's Day! I found some "green silk flowers" and I had some white ones, and with a bit of green and white ribbon, that made a cute centerpiece on a table or on the desk, or sitting in the living room.

OF course, here I go again, taking the "back way" around what I wanted to write about in the beginning of this.

I read an article this morning about an extremely "lucrative" (for the crooks) scam that took place all over this nation, in regard to "false claims" from Medicare. This is such a horrid thing, ANY PHYSICIAN is NOT a true doctor, if they are ripping off their patients. That is called greed, and any one in the medical profession and others are no professional if they take advantage of something as "fragile" as Medicare is. It just burns me to NO END, that the very people that NEED to be seen by physicians, that cannot AFFORD for our Medicare system to go "belly up" are the ones that suffer from this unspeakable crime. Even though they took down the largest fraud ring ever in this, I am sure there are others out there doing it also... and it appears that Medicare has tightened up and is paying more attention to these kind of schemes. Florida of course is a huge one, but there were several states including Texas involved in this.

Due to migraines, chronic pain, fatigue an  ALL THAT GOES along with disabilities also, NEED there disability (Medicare) also to help keep their health hopefully in check. I know of course some of you are not thrilled about the idea of those on disability... but I PAIN into my Social Security and Medicare for over 25 years before I had to file for my disability. So, I don't feel that I've taken advantage of anyone or anything. I just could not work anymore due to all of my health issues, and I've had to accept the fact, they are NOT MY FAULT! The Lupus, Sjogren's, RA, and so on... "just happened"... I've done nothing as far as I know to cause them....

IT took me a long time to understand, I am not to blame... I didn't go and do something within my life, as far as I know to "cause" me to become ill. You would be surprised though how many of us want to blame ourselves for it,

No chronic illness and/or chronic pain issue is FUN! They are all serious, and they change your entire life and your quality of life in many instances is truly sunken into the depths of the unknown... losing friends, spouses, family... to those horrid diseases, that we have little or no control over.

All we can do is take one step in front of the other, one moment at a time... and continue to hold on to what we can do, have, and hope for in the future.....

I've not disappeared at all... just been extremely busy... for one, fighting of two flares, making changes around my home, as you see above, and trying to fit some of the pieces of me, that seemed to have gotten lost in all of the drama... of daily life....

Tuesday, May 26, 2015

New Clinical Trials - Cure Click & My Relationship to all of this..

Currently, there are 6 Clinical Trials going at Cure Click

I wanted to give you a look at all 6 of them at once here in my blog, along with some facts, figures, and how I am involved with these. Giving you MORE information, I hope to help you understand YOU or someone else you MAY KNOW, with one of these illnesses may qualify to get possible involvement in a Clinical Trial. I realized a couple of years ago, that "Clinical Trials" in themselves can be sometimes a bit "complicated" to read through, understand, and even try to find out where they are and how you may qualify. After being asked to be a part of "Cure Click", I was thrilled to see that this is sort of a whole new way to possibly get into a clinical trial, and in ways that can make the "red tape" less and getting the possible help out of a clinical trial you may be seeking. So, here are links to the 6 trials available (and watch for more on the way shortly) that are active now. Then below them will be some information that will help you understand the trials, how they work, what my role in this is, and please always feel free to ask me if you need additional information about any of these, or about anything you might need to know about clinical trials in general.

Prostate Cancer


People with Previously Treated Stage IV Non-Small Cell Lung Cancer

High Cholesterol and Heart Disease

Patients With Mild to Moderate Asthma    

Severe Asthma    


 Type II Diabetes   

As you can see there is a wide array of Clinical Trials Available at this time, and more to come shortly. I had said that there are many things about Cure Click I like, and between being a bit easier to understand and go through to find out if you qualify, along with a way to ask questions to myself, or through Cure click, it really does make getting into a Clinical Trial seem simpler and less red tape.

I hope if you or someone you know would like to find out if you can qualify, feel free to click any of the links above, or you can post here, or send me a message and let me know what else you might need to know. If I can be of help then that is why I am doing this, is to HELP Others!

And here is my own involvement in Cure Click plus other information you may want to know.






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