Showing posts with label autoimmune diseases. Show all posts
Showing posts with label autoimmune diseases. Show all posts

Saturday, February 16, 2019

Saturday's Copy of My News Paper! "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"

http://news.autoimmunearthriticsystemiclife.com/#/



"Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"


All aspects of autoimmune/chronic pain illnesses, fighting to survive & grow past them, as I now stand alone to disallow these to get me down.


The latest in health news from pain, RA, Lupus, Heart disease, and all types of other Autoimmune Illnesses... along with other diseases, syndrome's and more. Sign UP on the link to get your copy online daily!

Tuesday, April 3, 2018

APRIL is National Sjogren's Awareness MONTH!!!!


http://info.sjogrens.org/conquering-sjogrens/topic/april-awareness-month


This was a "strange term" the 1st time my Rheumatologist said it to me. I had heard of it a couple of times from women I knew that had it, but I had no clue just how "damaging" this illness (autoimmune at that) can be. Did it ever takes its toll on me, when within 2 weeks I had 3 TEETH BREAK OFF AT THE GUM LINE! From that point, ONE OF THE MOST HORRIBLE THINGS I EVER DREADED HAPPENED TO ME... I HAD TO LOSE ALL OF MY TEETH AND HAVE DENTURES! I always "feared" losing my teeth, or losing my hair! One of those came true.... and to this day, (this was in 2014 that it began) I STILL FEEL SELF CONSCIOUS, AND IT HAS HINDERED ME IN MORE WAYS THAT YOU CAN IMAGINE, EATING, SLEEPING, BEING IN FRONT OF PEOPLE, TALKING, SINGING, YOU NAME IT, IT IS HORRID! I spent well over 6 MONTHS, having the REST OF MY TEETH THAT WERE ROTTEN AT THE GUM BEING EXTRACTED, then at the last he pulled ELEVEN more and put the dentures in... and again I will never be the same.... so SJOGREN'S is nothing to TAKE LIGHTLY! It effects ALL MUCUS MEMBRANES OF THE BODY, FROM THE MOUTH, NOSE, EARS, SKIN, YOUR INTESTINES, YOUR HEART, EYES, ANYTHING THAT HAS A MUCUS MEMBRANE CAN BE DAMAGED OR SEVERELY RUINED JUST OVER NIGHT... AND RIGHT NOW HONESTLY THERE IS NO CURE, AND EVEN THE TWO MEDICATIONS AND I'VE TRIED BOTH.. DO NOT REALLY WORK ALL THAT WELL....


Sunday, September 4, 2016

Happy Labor Day - Journey's and How Our Lives Change Within Moments - Coping with Grief, Chronic Pain, Lupus, RA, Sjogren's and taking one step at a time....

I’ve felt so many different emotion since June 9th, when my Mom passed away. As I told my daughter Amanda on Friday evening over the phone, I think the entire ordeal is just now beginning to set in as reality. I catch myself wanting to call Mom to tell her something or ask her something… often times a week. Then it dawns on me, I cannot do that via telephone anymore…. I’ve put off really doing ANYTHING for just myself. I’ve been so busy taking take of all that needs to be done, from paperwork, to painting and working on the house there, that I have NOT had anything I really wanted, needed - other than the weather get nice enough and for me to be well enough to feel like going to Winstar in OK for a night. As soon as I can find a Sunday and Monday, here, there and between there is going to be nice weather I plan on going and it will be a “delayed celebration” of what would have been Mom’s 81st birthday on August 28th.

 But, it came to me a week ago, if I don’t find some other way to sit at my computer to “write” I will never get it done. Right now due to my neck needing surgery, and possibly my lower back, I cannot sit here for very long at a time…. plus when I have the surgeries, I won’t be able to sit like this, due to the neck brace for 6 weeks and so on….


SO, I decided I CAN sit on the sofa, with my legs up, where my ankle also does not swell so badly, and THERE in the evening after dinner when these two hellions (Bub’s and Peanut” calm down - one on each side of me, would be a perfect time for me to get some writing done, more on my blog, be able to get possibly back into my advocacy work, but MAINLY WRITE! I desperately NEED to finish my 3rd book, and after what happened to Mom from this past January till June 9th, NOW I totally understand “why” my writing was “delayed”…. it is clear as day, that I MUST include all of what Mom went through along with myself, as a caretaker that needs a caretaker…. and so much that no one even knows happened…the details of each and every day being there with her those six months, even sometimes changing from hour to hour…. I witnessed such an unbelievable change in her emotionally, physically and mentally… and that is why my writing was put on hold…. I have much more to add to that journey, for myself, for her and for my kids… and Grandchildren later and those to come… SO I broke down and ordered an Apply Air Laptop. I didn’t get the “biggest” or most expensive, because some of it I probably may never use. But, the screen is large enough, and I already love the way the keyboard is laid out and back lit….

I just received it late yesterday via Fed Ex, so I really have not had much time to “learn” about it…. I felt much “guilt” and hesitated at first before I bought it, BUT, I recall what my Mom said to me, several times, but moreover just before she began to really show the signs of getting so bad, so quickly, she made me “promise” I WOULD complete this 3rd book, and have it published. MOM was and will always be my “Greatest Fan”…. So, I want to fulfill that promise to myself and to her…

thus then I knew the laptop made perfect sense…besides, as much as I LOVE MY PRIUS! And planned on leasing another the first part of 2017, if I forgo that, and drive Mom’s Elantra, which only has 10,000 miles on it, and just needs a battery and tires (from lack of her driving it much) then I could do away with a lease payment and higher insurance… I have not made that decision yet, because that Prius was the BEST thing I’ve ever had in my life, as far as “items”…. but I have time to decide… so by then things will be more centered, and I will be able to make that decision. So, here are a couple of photo’s of my Brand New Apple Air Laptop!



HAPPY LABOR DAY!

Why Do We Celebrate Labor Day and How It Began! 



For a lot of people, Labor Day means two things: a day off and the end of summer. But why is it called Labor Day? Labor Day is a day set aside to pay tribute to working men and women. It has been celebrated as a national holiday in the United States and Canada since 1894.

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Labor unions themselves celebrated the first labor days in the United States, although there's some speculation as to exactly who came up with the idea. Most historians credit Peter McGuire, general secretary of the Brotherhood of Carpenters and Joiners and a cofounder of the American Federation of Labor, with the original idea of a day for workers to show their solidarity. Others credit Matthew Maguire, later the secretary of Local 344 of the International Association of Machinists in Paterson, N.J.

The first Labor Day parade occurred Sept. 5, 1882, in New York City. The workers' unions chose the first Monday in September because it was halfway between Independence Day and Thanksgiving. The idea spread across the country, and some states designated Labor Day as a holiday before the federal holiday was created.
President Grover Cleveland signed a law designating the first Monday in September as Labor Day nationwide. This is interesting because Cleveland was not a labor union supporter. In fact, he was trying to repair some political damage that he suffered earlier that year when he sent federal troops to put down a strike by the American Railway Union at the Pullman Co. in Chicago, IL. That action resulted in the deaths of 34 workers.


In European countries, China and other parts of the world, May Day, the first day in May, is a holiday to celebrate workers and labor unions. Before it became an international workers holiday, May Day was a celebration of spring and the promise of summer. Membership in labor unions in the United States reached an all-time high in the 1950s when about 40 percent of the work force belonged to unions. Today, union membership is about 14 percent of the working population. Labor Day now carries less significance as a celebration of working people and more as the end of summer. Schools, government offices and businesses are closed on Labor Day so people can get in one last trip to the beach or have one last cookout before the weather starts to turn colder.

 Links Below for More Information On the History of Labor Day


 

 

 

Thursday, January 21, 2016

Glenn Frey of the Eagles & His Suffering from RA & The Medications and Treatments that can be almost as bad as the diseases....

Gosh How many of us discuss this daily! With RA, Lupus, and any type of autoimmune diseases, the medications themselves can cause as much havoc with our bodies as the diseases themselves. Do I ever know this one, after the double set of cellulitis on each thigh, that then turned into abscesses, that took over 7 MONTHS to finally get to the place that I am not on antibiotics, they are not debriding them weekly, and then I have had double pneumonia at least twice... I know for a fact that one of my RA biologic medications caused the cellulitis that turned into the nightmare of abscesses. After having those incised, and for weeks they were still not healing, finally I was sent to a wound care specialist at Charleton Methodist in Dallas. I have no doubt had I not went to them, I would have been in the hospital with IV antibiotics and no telling how bad of shape I could have been in... I was so terrified of the MERSA virus being a part of it, I kept seeing that those two huge holes in my thighs were turning almost a dark brown/blue in color and I feared the worst each day...although the left one finally sealed over, the abscessed again, had to be incised again, it healed just before I went to the Wound Care Place... but the right one was 7 trips for 7 weeks and it just finally sealed over about 2 weeks ago... yet the doctor released me, and said it is still healing some on the inside... each day I have to check it though to make sure it is not abscessing again. SO FAR I have been fortunate... even with the double pneumonia, Ive had it at least 3 times, once before being diagnosed with the autoimmune illnesses... and even though I probably should have went to the hospital, I stayed at home, done everything the doctors told me to do, and made it without having a hospital visit... BUT, that does not mean that it will not happen... I know now what to watch for... I had no signs of having pneumonia the last two times other than a severe headache, then I began to hallucinate, and finally figured out I was running a high fever... over 103 degrees... which sent me to Urgent Care immediately! Again, I was one of the lucky ones... but it meant no more biologics for now, they took me off the MTX, which I had been on for 5 or more years... and FINALLY after having my stalled pain pump replaced, my Rheumatologist started me on Minocyline... an antibiotic they use for RA.. BUT, I figure I will be going on Xeljanz, within 3 months... yet, the RA and Lupus are continuing to take their toll on my joints... I have an 80% compressed disc in my neck, and need surgery very soon....and I still need the lower lumbar/sacral surgery... both I know are getting worse because of the Lupus and RA... so are my hands, fingers, thumbs and wrists, that are showing signs of looking crooked...especially my thumbs which hurt so badly.... I have lost a great deal of strength and grip in my right hand, and I am right handed.... I just yesterday threw out 3 MONTHS worth of that one biologic... and it almost made me sick to pitch out medication, that probably cost thousands of dollars... but I cannot return it, I cannot do anything with it, and I do not wish to ever try that one again... not after what I have suffered through... so to see others, and then see that these diseases do not show any mercy... they effect the famous, the folks like myself, the young, the middle aged, the elderly... and can take a life so much, much earlier than should be taken... it is a crime, that until research finds a cure, a reason, a way to stop these hideous illnesses in their tracks... none of us are immune for sure... 


Wednesday, November 11, 2015

A Wreck, that has totally "wrecked" lives and where is the justice???? Now I am no longer "stifled" and can say as I please... Autoimmune Illnesses & the Horror of Life and Dismay

By the way, just got home from Mom's Kidney sonogram, and I FINALLY got a call from my PAIN DOC'S office! My pain pump IS APPROVED, thank goodness, AND they were going to do surgery this coming Friday, BUT due of course to the abscesses, I have to wait, and get a "clearance" from my PCP... and I have to call them to let them know I do not think these antibiotics are working.... and then tell them they HAVE to GET ME WELL ASAP so I can get this surgery over with! Wish me luck, and still "no word" on the other item yet....
and on a FURTHER DISTRESSING NOTE (to say the least) AFTER 20 MONTHS of all we went through, a marriage destroyed, and several lives totally destroyed in so many ways, we LOST! They "ruled" that "neither" our car, NOR the truck driver were "at fault".... needless to say, yes, that ends it, but it sure as hell does not help ALL of the other issues that went along with it. I will say more, but right now I am so upset and disbelief - so I shall tell more later...



I have said from the very beginning, that "something smelled rotten" about this entire thing.... for one these 2 "so-called" witnesses, I've seen where the accident happened, and unless someone was staring at that piece of I-45 all the time, they would never see anything... AND I also feel that both the owner and driver LIED on the stand, in their depositions, and more... I have no way to prove it, and probably never will, but I also had a feeling when I was there Friday, that the "jury" selection was really "biased" - over 70% were the same "nationality" as the driver and owner, and everyone else at that company for that matter.... I am still in shock to say the least, along with of course Jim, my Mom, my daughter... and she KNOWS all of the issues about a CDL License and rules and restrictions of drivers etc... her husband works for an oil field company, and a couple of their drivers have been in accidents, and she said NO WAY no HOW would that business gotten away with this... lots of stuff just not "right"... but as I said... nothing to do but try and move forward.... what a nightmare, over and over, living it every single day since March 26th 2014 and how much is destroyed, lives, a marriage, and a great deal more than that. BUT, it is hard to get something "fair and just" IF another side is playing dirty pool.... and now I can say what the heck I please...

I've felt this from almost the very first moment that we took this and decided to file a suit against them. I "watched" each and every tiny moment of how this company "acted" - how they from the 1st "denied" any wrong doing, and yet admitted he was ON A CELL PHONE, a car in front of him, that had time to get out of the way, and everyone, including experts, and in fact their own "expert" in re-construction of the accident admitted he should have SEEN our car, no matter what, and being a truck driver, if he had his eyes and mind of the road, he had more than plenty of time to stop! Even before Jim was out of surgery in those first hours, I spoke with my insurance adjuster, she she told me the two guys in the Tahoe, had been known for appearing to get hit, thus they cause the accident, but claim otherwise and had been PAID several times by different insurance companies that would "settle" just to shut them up... In fact, the trauma doctor that I spoke with while still in the lobby of the hotel there in Washington DC, when I 1st learned of the accident said two things to me, before he even began telling me about the extent of Jim's injuries, he said JIM WAS NOT AT FAULT AT ALL, HE WAS NOT SPEEDING, and he was driving fine... that an 18 wheel tractor trailer hit him from behind and basically "ran over" our car! Of course due to the fact, I was told this on the phone by the doctor, and my insurance agent had told me this about the guys in the Tahoe, it was "not
admissible" in court, because it would be considered "hear say".... in fact those two tried to get money out of my insurance company, and the woman there basically told them to take a flying leap... they had proof of them causing this type of situation in the past... Also they basically tried to say that my car, the Hyundai was not "road worthy" and that the hood flew up which began the accident... I know for a FACT, MY CAR WAS COMPLETELY ROAD WORTHY! The Monday morning just before Jim drove me to the airport 70 miles away, and back home. The hood on my car, was extremely difficult to even open. The hood was very heavy for a small car, and I had made that statement on several occasions... and it had a "double locking system"... and that was to keep it from being able to "fly up"... you had to unlock the first one, then push further into it, to "open" it, and same way closing... once I closed that hood, it was as secure as any hood could be.... I will always remain stating that they all "flat lied"... that they "paid off witnesses" - these people standing around in their "yards" on the side of I-45 coming into Dallas, and 2 of them "happened" to have witnessed this so called hood issue... I am sorry but that just does NOT add up.... the odds of that are slim to none... and I also feel the jury was "biased"... as I had said above, the company was owned by the same nationality of people as the driver, who basically could NOT even speak English... and way over HALF of the jury was the same nationality... now if that is not biased, I don't know what is... due to my own health issues, these abscesses on both thighs, the pain pump being stalled...and so forth, unfortunately, I was not there to even see the jury picked.. and I was only there briefly on Friday to give my testimony, and then I left and came back home.... I really was not supposed to go then, but my doctors told me if I went, testified, and came home, then it would probably be okay, thus that is what I did... I SAW the HOOD LATCH MYSELF at the impound the net morning, when my son and I went to see the car, and take pictures.. and that LATCH was still fine and in fact, they had pulled the wrinkle out of it enough, they had it "latched" down, I guess the tow truck driver did that... and I took pics of it.. but at the time, I did not realize that I should have taken more photo's and much closer to the latch, yet then I had no idea that anyone thought the hood flew up before the car was hit.... or I would have made double sure, I had more information, and then the Dallas Impound "sold" the car... and that was before we had retained an attorney, thus the hood had basically been removed, and the motor taken out before our attorney found it... fortunately it had not been crushed yet, but still all of that being taken off, did not help, they had removed all of the pieces of the latch on the hood, and the parts on the car that held it, thus that proof was destroyed before we had any photo's etc...anyway, I could sit here, and continue to go over and over and over each and every tiny detail, from that moment I got the 
dreaded phone call, and tell each and every detail of the entire ordeal, but it does me no good, I already have had to "relive" it so many times, and it just causes me more hardship, more pain, more emotional overwhelm, and will not allow me to try and "heal"... not that talking about it is a bad thing, and that is the one thing for me that is cathartic... to be able to "say" or "write" my feelings, thoughts and so forth.. that is what makes me the writer I am... but all of that will not change the outcome, and I can talk until I am blue in the face, and that will not "fix" the damage this has caused to Jim, myself, and my family and friends.... as I told my Mom several times, I feel "cursed", and this is not the first time in my life I felt that way... it is like some dark ominous cloud hangs over me, throughout my entire life, I have felt it and almost seen it - and if anyone says, "Well, everything happens for a reason" to me, I may smack them in the nose!!!! That is what we "say" when we are at a loss for words... and I am sure I have said it too in the past, but trying to "find the good" out of something so outrageously bad... sorry but I just don't see it.... so where to begin - to try and "pick up" the many pieces of a heart broken, a body well riddled by illness and stress, and an emotional realm that as "strong" as everyone claims I am, I am not sure at all, that I have any more "stamina" of mind to sustain me anymore... and even trying to put one foot in front of the other, and move forward... well, that remains to be seen.... my worst concern at this moment is Jim.... he stood the one that had more loss than anyone from this, and for him, this means no help with doctor bills for the future care he needs, no money to sustain him in life and he has lost much of the place in the brain to "hold" a thought process so he can again design and develop websites and so on... the "coding" is something that requires a vast amount of holding onto thoughts, that may have to require coding on several different places and pages within a site... and especially anything complicated as his clients have had, online shopping carts, and the "behind the scenes" information that must detail their sales, inventory and so forth. I "worked" with him on more of the design part for about 4 years or so, and since then, so much has completely changed... it would take me months, if ever for me to even be up to speed again to even do design work... so I know for him this is a devastation that goes far beyond what most even comprehend... again each and every thought and prayer are needed in a continuing way... to help sustain him, as well as myself, and my family..... 

Tuesday, November 3, 2015

Real Time, Real Life "Gore".... THIS is what I am living with at the moment...








THIS is what happens when your immune system is "Hijacked" by an Autoimmune Disease(s) - both legs with abscesses in them... just as 24 hours from when the surgeon opened these yesterday.... not a "fun" way to even remotely think about the holidays for sure....

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