Showing posts with label Actemra. Show all posts
Showing posts with label Actemra. 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!!!

Wednesday, April 25, 2018

FED UP WITH PHarmacies, and them "not doing what the doctors tell them to do!" This means YOU HUMANA!!!


FED UP WITH HUMANA SPECIALTY PHARMACY! They have SCREWED UP 3 WEEKS IN A ROW, & I STILL DO NOT HAVE MY RA MEDICATION!!!!!


I'VE BEEN ON THE PHONE WITH THEM AT LEAST 5 OR 6 TIMES! EACH time they have "a different" reason, and I told them I am fed up and this is why I DESPISE USING A MAIL ORDER PHARMACY! You "never get a straight" story" as you do when you can see the pharmacist face to face!

I got so mad this morning after weeks of them "making every excuse" when basically THEY WANT TO TELL MY DOCTOR WHAT I CAN AND CAN'T TAKE! WHICH IS BULL! But, I "chewed her out" and hung up... the woman on the phone, was already being a bit "rude" and that just make me more upset, so I told her off, (but I did not say any curse words() LOL although I wanted to! And just hung up on her, THEY ALWAYS TRY TO BLAME IT ON THE DOCTORS! When it is THEM THAT HAVE SCREWED UP!!!!!

They always want to "say the doctors office is messed up" when it is usually THEM THAT ARE MAKING THE MISTAKES! Plus now they as I said on Facebook, want to "tell our doctors" what they "can and can't do"....

It is none OF THEIR BUSINESS OTHER THAN TO FILL THE MEDICATIONS AND GET THEM TO THE PATIENTS!!!
They are causing me needless pain, needless wasting of my time on the phone again and again. They are WASTING THE DOCTORS TIME, with Paperwork"

Friday, March 9, 2018

Young Women from 24 to 32 or so that really NEED HELP TO GET THEIR LIVES ON TRACT... AND wanting a 2nd chance & the difficult time they have. Me, lupus, RA, Sinus infections infections and Life!

Lupus Flares, Pain Pump refill, Young Women & getting another chance to change their lives, LIFE, and Chronic Illnesses with PAIN!



Everyone, it has been MORE THAN AN INSANE WEEK OR MORE FOR ME! Between my own doctors visits, and a friend had a new baby and there were issues, but all is well now, I had to go over to the next town in our county to renew my driver's license, since it's been 12 YEARS LOL since I had gone in and took a new photo etc, I had to physically go in this time to renew it. That took forever; although I must say the system now is better than it used to be. Then I had another friend with problems, and was trying to find some help for her, along with my own other stuff, cutting tree limbs, and I've got to get to the market today, but I have not had time to clean my house like it needs, and then I have to take a shower, and it's so pretty outside, I need about "5 of me cloned" so I can do 20 things at once!!!! I have not felt that great yet either. In fact, I have not started my RA meds yet, since being ill with the sinus infection. For some reason, I was running a fever, low grade, but still a fever Monday. 

I went in for my pain pump to be refilled, and when they checked it, sure enough I had a low grade temp. I came home and checked it myself, and I was still running a bit of one. I didn't run any fever at all with the sinus infection. Plus, I have kind of "stopped" running a low grade temp with the Lupus. Used to I seemed to almost have a low grade one daily with the Lupus. It went back down and as far as I know has been back to normal the past couple of days. But, I was concerned so I still kept off the Actemra and the new Xeljanz, until I could see what the temp was all about. But, I've had a damned headache, and a bad one at times, for the entire week! IT could be "stress" or maybe I have a Lupus flare, that will give me a Lupus Migraine from hell at times. 

So, yesterday I "almost" went BACK for a 4th time since the 1st part of January and had them give me a prednisone injection for the headache. But, I toughed it out yesterday, and it is not so bad so far this morning. So, it could be anything causing it. With everything going on, as I said I could be more "stressed" out than I think and it's causing the headache. Usually I don't have one that bad. 

When they are bad enough I want to scream and cry, usually it's due to a Lupus flare, or I am sick with something. So, I am going to take the Actemra later this evening and then take my 1st Xeljanz tomorrow and see how things go. Please keep me and those couple of people in your prayers, with problems and the young woman with a new little baby girl. She needs lots of prayers, so she can get her life together, and get back on her feet. The very "odd" thing is, lately, I know of about 4 people, that have someone in their lives in the same situation. The nurse that comes to see me weekly from my insurance, is helping a young woman with kids, and her trying to get her "stuff" together, and the young woman I know. Then my daughter also knows a young woman going through about the same situation, and I have another friend that has a daughter who is really trying to get her life on tract, get a job, her own place to live, and put herself back on the right roads.0 

These young women ALL need our prayers. It seems that many of them at about 25 years old, either get involved with the "wrong crowd", have a child or children, either the Dad is not there or does not help out, and they are desperately trying to dig their way into a 2nd chance. But, that is hard to do... it's hard to get any assistance these days, it takes so much time, paperwork, and red tape. Then of course we have some that have "abused" it, so that makes the ones that really WOULD benefit and try to do right unable to get the help they need. So, something about that age group, some between about 24 to even 32 or so, really lots of young women out there with the same problems... and NO PARENTS, that either will help, or are even around to help.... it sucks, and i AM SO PROUD THAT BOTH OF MY ADULT KIDS ARE IN A PRETTY GOOD SPOT, AND HAVE THEIR HEAD ON THEIR SHOULDERS RIGHT!  For that I am BLESSED AND GRATEFUL FOR SURE!!!! Have a good weekend everyone!

Wednesday, February 7, 2018

Xeljanz Rheumatoid Arthritis, Lupus & the "latest in treatments and medications"... The Horrid Flu Season, & A New Year


I want to wish everyone once again a Happy Beginning to 2018! I cannot fathom that we are already moving into February! It was like yesterday, the holidays were here.

Now, we move on to the "flu season" which has been a nightmare to say the least!

I've spent well over 6 weeks "sick" but not really with the flu. Mine I feel had began as both an RA and a Lupus flare, both severe. I had not been feeling well since before Christmas, but I put off going to my doctor's or to Urgent Care. It was the holidays, it was everyone beginning to be ill with the flu (viruses)... and at that time they were just beginning to see that the "flu" strains which are several, were not all covered by our vaccine.

I had gotten my fly vaccine back in September. I happened to be in my PCP's office for a follow up and they had gotten theirs in, so I went ahead and got mine. Being one of the hundred's of thousands with the screwed up immune system, between the autoimmune illnesses, and the medications that also contribute to our systems being weakened, I've been taking the flu and pneumonia vaccines, when I need them. I had the flu about 10 years ago and was ill for a month. In fact it was just after the Christmas Holiday, at the time I was a manager for a retail women's clothing store. I passed out almost while at work, and my daughter had to drive me to the ER across town. And I had the flu. Of course that was the worst time for me to be ill, due to that job. With all of the after holiday sales, and inventory time, I was sick for a month, and lost the job. Other things beyond my control also did not help, but it really hit me hard.

Then while in Seattle, I had gotten not only double pneumonia, but also the whooping cough at the same time. Again, in fact, it was the 1st day of a brand new job I was headed to, I got so ill in the car, I had to turn around and go back to my apartment. I called in and told them I was so ill, and went to an Urgent Care down the road. They wanted me to be admitted to the hospital. but, at the time, I was supposed to start a new job, was in the process of moving, and going into a whole new "life and career" at the time. The irony to the entire thing is when I had interviewed for the job, both "bosses" were SICK! They had been coughing, sounded terrible, and although I sat WAY on the other side of the table, I honestly think I got sick during the interview, or was exposed.

After 10 days and two trips for shots, cough meds, and antibiotics, and then a lingering cough for a month, I got "better", went to work, moved into my new apartment, and was settling in to the new life style.

So, the "flu" and "pneumonia" are two things I prefer to stay away from if at all possible. Yet, I've had pneumonia a couple of times since, even with the vaccines. So, it can happen.

My RA has been really worse over the past 8 to 10 months. We changed me over to Actemra, from Enbrel. But, after 6 months I am still showing signs of active RA especially in my fingers, wrists, and ankles, and some in my hips.

I felt when they took me off of the Methotrexate, due to infections, that is when I began to have a more severe action of the RA. I had asked if we could try the MTX again, but they just didn't want to chance it. I had mentioned "Xeljanz" before, but at the time we were just beginning the Actemra, so the wanted to wait.

I shall continue this either later today or tomorrow....

Wanna Get Posts via Email:

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...