Showing posts with label "It's Not Me! It's The diease!". Show all posts
Showing posts with label "It's Not Me! It's The diease!". 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 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!!!

Monday, January 26, 2015

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

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

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

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

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

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

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


Saturday, November 29, 2014

Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!



 
http://www.sjogrens.org/




I REALLY have been pushing about Sjogren's now for a long while. It seems I never REALLY had ANY of my doctors take it all that seriously, even as many times as I brought up the dry mouth, dry eyes, all of the mouth lesions I had and so forth. Then when only about a year ago, I began having my teeth literally rot off at the gum line and fall out, I began to see them a little more concerned. YET, I am STILL THE ONE who really pushed for the medication, which for Sjogren's there is only two. I tried both and am on Pilocarpine and have been for a long while. I spent several years chewing gum with no sugar and the Xilytol or however it is spelled in it, because it was supposed to HELP with moisture in the mouth, used eye drops and still felt like I cannot talk very long without being hoarse and sometimes losing my voice, or if I go anywhere, I have to talk something to drink... not even to the Wally World, and if I am going to shop, that means picking up a bottle of diet Sunkist, or green tea or something, so I can drink it as I shop. If I get in the car to go anywhere very far away from home, I go with a drink and gum. Well, of course ALL of what the few teeth I had left, by the time we finally found out how much damage was done, did make little difference. The "complete surround kind of special X-Ray" of my mouth, teeth, and jawbone, showed 99 percent of my teeth already going to rot out anyway. Thus as many of you know I went through the torture of having the rest pulled, fitted with dentures, of which AGAIN due to the Sjogren's, the bottom ones won't "hold" at all. You also need some "moisture" to help keep them in... the top ones do fairly well. I guess I have enough with the "suction" of them, along with the powdered Fixodent that goes on them, for the most part they stay in fairly well. So, I had to wait at the very least 90 days after they were all extracted before we could even think about the "mini implanted" little pins that my bottom ones will be fitted on, after they are implanted down into my jawbones in 4 places. Then my dentures will be "modified" to fit down on those pins which should hold them into place. I also found out, that the top ones they "usually" don't pin, which I thought they did. BUT, if mine won't stay in as well as they should then I look at putting 4 MORE on the top!!! Which will be ANOTHER OVER $600.00 FOR EACH PIN!!! Of course I still have the "oral/maxillary fissure" which sounds horrid, but a small hole as I have said before between my mouth and sinus passage caused by a root to pull a hole in it, when the tooth was extracted. So, that also is contributing to the top one coming a bit loose at times. Air can get in underneath it from that hole and then it makes the "grip" it has to the pallet of my mouth break loose. Anyway, back to my issues with Sjogren's. I REALLY feel as much as I PUSH for RA, Lupus, Raynaud's, Sjogren's, MS, FM... and other autoimmune illnesses and/or rheumatic and arthritic diseases, that Sjogren's needs to truly be addressed much further also. When it can truly cause as much damage to vital organs, eyes, mouth, teeth, stomach lining, the esophagus, swallowing, drying any "form" of mucous membrane, plus now I read that there is about a 50% CHANCE OF DEVELOPING NON-HODGINS LYMPHOMA, if you have Sjogren's! Women, of course tend to me at much higher risk due to the Sjogren's being Autoimmune in Nature. So, as I begin to think about my new book that I shall be writing on over the next year or so, and doing my part as far as helping to be a voice, to advocate, to be an activist, volunteer and Ambassador, for I feel ALL of those are very crucial also, I am going to be trying to learn a great deal more about Sjogren's, both primary and secondary. I also would love to hear from any of you that have it in either way. I am going to post this on my blog (by the way I am waiting to see some comments and posts from you guys and gals also)... and would love to have some of you jump on the band wagon about Sjogren's. It can be a highly dangerous, and sometimes deadly illness in itself. Plus you can also have Celiac Disease due to Sjogren's too.

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Phi Theta Kappa Life in the past from 1978 to 2020, Chronic Illness, Family, & How we tend to shape" our lives even after all these years.

Even though my life did not go the way I had planned after high school, I did get a 2 tear degree and made Phi Theta Kappa with a 4.0 GPA, p...