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!!!

"New Way" of Asking about a Patient's "Pain Level"!

I have often wondered why with all of the medical knowledge and technology we have, why someone has not invented a "new type" of pain scale.

This "1" to "10" is so totally "not really" giving anyone a true look at what a patient's pain truly is... I mean what is a "3" to someone, versus another it maybe an "8"?

If there were another way to "give someone an example of what those numbers actually meant" then I feel our medical professionals would also have a much better understanding of what that individuals pain level is. In fact just this week, Home Health Care's Nurse that came over to see my Mom for the 1st time asked her "pain level". Well, 1st of all, my Mom just over the past 6 months really began to have "serious daily chronic pain". Up until that time, she was not even sure what that "1 to 10" was. Sure, it is on the walls at the doctor's offices, hospitals and you are always asked, BUT still for someone especially in chronic pain, it can be baffling to describe what that means to that person,

So, I read an article just this week and it had a posting of a brand new way, of taking that 1 to 10 and putting "real life" examples to it, that most can relate to. Here is the chart below:

This was put out by the American Chronic Pain Association and is definitely a much better way of people stating what their pain level is, and what pain level "they" can "live with"....

Plus those with chronic pain, really do go through most of these examples throughout any one day, week, month, and year. In one day, there are times that I may feel like a "6".... but within hours, that may change for a number of reasons, and go to a "2".... and I am willing to bet MOST of us with all these different reasons and types of Chronic Pain will feel the same. I am actually going to print this, and from now on, take it to any office visit etc.... when pain needs to be described. I feel by showing this to my health care workers, nurses, doctors and such, this will make much more sense than me saying I have a "9" but I can live with a "3"... well a "3" under most circumstances is TOO MUCH PAIN to have to bear, especially by the older way of thinking... and an 8 things such as childbirth, kidney stones, severe days of RA/Lupus flares and Arthritis, and depending on what I have done or not done can make that happen, yet within a day or two, I can be at a 4.... again thougH that id NOT AN ACCEPTABLE AMOUNT OF PAIN TO LIVE WITH DAILY! IF CHRONIC DAILY PAIN, PUTS YOU IN YOUR HOME, UNABLE TO DO MOST OF YOUR ACTIVITIES, THAT IS TOO MUCH PAIN TO HAVE TO LIVE WITH!


I Hope that this "New Chart" will give you a better example as how to describe "your own pain" to your doctors. I know for me, it is definitely a better system than the old way!