Showing posts with label Lupus. Show all posts
Showing posts with label Lupus. Show all posts

Thursday, June 27, 2019

Infection in Left Knuckles Infected & on another round of antibiotics Still with me, along with more issues, now the city and my road a mess they have made!

SO! I STILL HAVE AN INFECTED "HAND" joints, whatever! I have been through hell this past 10 days or more. Between this hand, worrying about having to postpone the pacemaker AGAIN! (no way they will do a pacemaker when I have an infection still going), then the city had FRIGED UP MY ROAD! I found out THEY SCREWED UP, HAVE HAD US HALF WAY BLOCKED IN AND WE NEVER KNOW IF WE WILL BE ABLE TO GET IN AND OUT OF OUR DRIVEWAYS -

they did this AND NEVER WARNED ANY OF US! I talked to neighbors yesterday and found out they did NOT get the materials in they needed so now they are "stalling". They keep putting truck loads of gravel type almost a sandy rock mess and if it were not bad enough, rolling that down, and then if it is not wet from rain they come along and wet it. So, either it is WET AND MUDDY! OR it's dry and the dust flies everywhere!!! No one "SEES" that they are driving and kicking up mud, dust, rocks everywhere driving over it. I blame the city for that also, they should have SIGNS UP WARNING THESE IDIOTS NOT TO DRIVE FAST OVER IT.

Then they have "built up" the road so high (my property already has water that runs on it if it rains very much, because they have the other side of the road high enough, so all of the water runs to my side and into our ditches and under my carport, and my back yard looks like a landslide has happened. I know they can't help the rain BUT they dug out "some ditches" but like mine is full of water it needs to be dug out and the culvert is so old, it's bent down and won't allow water to run thru so now it's standing in water, causing mosquito's (but they gripe at us) for letting water stand if we have anything ti can stand in....

and now they are running I guess mice into my laundry room... and (suddenly I had the bars out just disappear 3 times now since this began) and then something (which could be a possum etc or a stray cat we have and so forth) run under my house and die! For the 3rd time in 2 weeks I woke up now to my laundry room with a stench worse than anything else you can imagine! I have every hole blocked, but they can weasel their way under anything if they are desperate! I am in the process of trying to type an email (I can barely type my left hand hurts so bad).. to the guy over this mess of a road they have made, and give him a piece of my mind... who is going to fix this mess, details our cars covered in dust and grime? Who is going to get that water out of those ditches... I hate to sound prejudice but I "live on the wrong side of town"... if I had a 500,000 dollar home, I bet it would be concreted, with a walkway, and they would have the water properly running out and away from the homes.... I am just so fed up. I pay MY TAXES ON TIME! Believe me if I didn't they would FINE ME 10 or 20%!!!! I should tell the city each day this is a mess they owe us on this road back a portion of the taxes we pay! Anyway, so keep me in your prayers... I NEED this hand well, so I can get this pacemaker in and go about my life... why is it that it is ALWAYS SOMETHING WITH ME?????"

I have to wonder if the pain in my hips that I still have after the injections, is not also something to do with this infection. both hips especially the right one still hurt. I was at the market on Monday, and when I was trying to finish up and get checked out, my right hip and side started to hurt. It scared the hell out of me. I came home with a LOAD of groceries, since they had my road so messed up I could NOT get out of my driveway all week last week! So, my groceries were in about 7 bags (the reusable ones) plus 4 gallons of water. I did not think I would ever make it in with it all, and get it put up.... but I managed.

I worry my RA and Lupus could be getting worse, or something else is going on, and they have not found it yet. My labs they did a couple of weeks ago when they found the infection, were really all messed up. My white blood cell count was at 15. But, there were other labs that were also really "off" that usually were not that bad, so I have to wonder.

Saturday, June 15, 2019

Happy Father's Day TO Each if you - Dad's, Grandad's, step-dad's those who raise you like they are your Dad & More!

TO ALL of the INCREDIBLE DAD'S, FATHER'S, SONS WHO WILL SOMEDAY BE DAD'S, GRANDFATHERS, & the list goes on.. no matter how old we are "Our Dad will always be"  Our Dad and "Bestest Fishin' Friend!" Happy FAther's Day! And Dad even after this much time has gone by, I STILL miss you! I seem to "still use some of your sayings" almost everyday of my life! LOL!

Okay, here it is in a "short version"... I was scheduled for the pacemaker this coming Monday morning in Dallas. The week before Memorial Day my left hand around my knuckles "started in my thumb" began to "look odd, kind of swollen, and reddish"..I thought I just over used it doing something. By the next morning, the knuckles next to it did the same, and so on, so forth. I STILL felt it was a Lupus/RA flare BUT I HAD NEVER HAD THIS TYPE OF ISSUE WITH MY LEFT HAND AND KNUCKLES..I researched, asked 2 pharmacists, and decided it maybe "gout arthritis", and I would need a special med called "Colchicine" (it helps to dissolve the uric acid crystals in the fluid around the joints).

So finally I went to Urgent Care, I believe it was about a week ago LAST Wednesday, so almost 2 weeks ago. They felt the same either gout, OR possibly some type of "infection arthritis" in the knuckles. Well, I went into panic mode. I KNEW NO PACEMAKER IF I SHOW ANY TYPE OF INFECTION! I was now on one antibiotic, higher dose of prednisone, & they did lab work to find out if they could see what was causing the problem. I DID NOT GET to even know until Thursday (so over a week or more)








Wednesday, May 8, 2019

Stormy Weather, makes Joints hurt horribly, Echocardiogram shows "heart Function" issues & "special pacemaker" coming...

Weather here SUCKS!!! Thunderstorms, lightening, rain like we need more rain... and it appears it may NEVER quit! I've not been online much or as far as on FB, Social Media etc I've posted in my blog, and update my newspaper and send it out daily.. but I've been stuck with yet again doctor's visits, the weather reeking havoc with my joints... and just feeling lousy... I had an echocardiogram last week. It was supposed to just be "routine" before we made a date to implant the pacemaker. So, I didn't think much of it. Monday, I went in to talk to the surgeon about putting the pacemaker in etc... and he was

RUNNING VERY, VERY LATE! Which is the usual for surgeons especially Monday's... so had waited quite a while. they finally called me back in, and I waited again for a bit to see him. Well, he kind of "burst" into the room, (which he is kind of that way) LOL just a great smiling doctor... but can get serious when need be... and as I started to say something, and he said well your cardiologist (which is his wife) said that you needed a "special" type of pacemaker with two leaders rather than one.

I did not know that the test fro the echocardiogram came back showing my "heart function" was "worse" than two years ago sine I had the last one. So, he proceeded to tell me they were trying to avoid you coming in to see me, because I don't do the 2 leads type but Dr. Rae in Waxahachie does, That is who Dr Meg Sullivan is sending me to, I was so upset first because had not even heard about my test results yet and had no clue, they were "off"..which since 20 years after the 1st heart attack, and even after the 2d one the tests had always remained the same. no better of course but no worse either... So from what information I got hod of online, then her nurse called me ate Monday evening to tell me who they were sending me to see and I had her look on the test results to tell me, "what is going on with my heart function?"

She said it had always remained at a "45" which I believe they are talking about the "trajectory" and how the two chambers of my heart "work" as far as pushing the blood in and out, and sounds like the natural "electrical" part of my heart is not working as well as it should. So, suddenly this went from a "regular" pacemaker, that we hoped with it keeping my heart rate as a normal place it would help several other problems, fo NOW I NEED IT because I have DEVELOPED ANOTHER PROBLEM! So, that was like me hitting a "brick all" since I was not expecting any of that at all. Anyway from what I read n that specific pacemaker, it is attached to I guess the chambers , two of the and it keeps the natural rhythm, but keeps that trajectory on tract also... so I am waiting on a call fro the specialist to go see hi, and in the meantime,

I am getting the CT next week on my lumbar spine and already have a appt made to see my Orthopedic surgeon. My pain doctor who ordered the CT scan had called my Ortho doctor for him to be sure and see me once the CT results are in. If it's not one thing it's the other... so I guess in a way it was good that I did go in about the pacemaker, or she would have not ran the echocardiogram... and this problem may not have been found.... and of course with the weather as it is I hurt ALL OVER!!!!!!!!

https://www.nhsinform.scot/illnesses-and-conditions/heart-and-blood-vessels/about-the-heart/understanding-how-your-heart-functions

Friday, April 26, 2019

A NEW BLOOD TEST for FIBROMYALGIA! The article says it's 99% ACCURATE!



A NEW BLOOD TEST for FIBROMYALGIA! and it says to be 99% ACCURATE!

I know MANY of you that will be glad to hear this one... they are now saying they have a "blood test" that ia supposed to be 99% ACCURATE in determining whether you have FIBROMYALGIA!!!! NOT that anyone WANTS to hear that they do, BUT for so many years, especially WOMEN have been led to believe it was "all in our heads", or we were too "stressed" or "depressed" or, or ... whatever type of "so called diagnosis"... just to get them "satisfied"... 

I went through this years ago.. when I have the Migraines so badly they would send me to the ER - at times 3 or more times a month! I went to every "known specialist", every medication, from antidepressants, that didn't do a thing buy make me tired and worse.  I went through injections into my spinal fluid, into my "occipital nerves" at the base my neck, the "Imitrex" that I had severe side effects from, and come to find out, those medications I should have never been given due to my heart... I was even given "Thorazine" and the worst was that is given for "bi-polar" disorder, and it built up "toxins in my blood". One day at work, (when I worked in fact at the hospital in Corsicana in the business office - between 1990 to 1996... and I was with a patient at my desk and suddenly, I began "talking about all kinds of things" and had no clue why? I started talking about "bathing suits", and I "knew" something was very wrong.. I accused myself, and honestly thought I was having a stroke, and went down to the ER only to find the "Lithium" was building up so high in my blood stream, 

It was causing me to hallucinate,... then of course therapists, psychologists... even "bio-feedback"  and they even put me as an inpatient at the hospital for 3 days to give me some medication like Imitrex that is a vasoconstrictor.. and it was that "dangerous" I had to be in the hospital and wear a heart monitor while they gave me this medication by IV... t was totally insane what I went through between the mid 80's even until 1999 or so. And as I said come to find out several of those medications I should HAVE NEVER been given. I had my 1st heart attack at 40 in 2000.... not all that long after all of those things took place. Yet for DECADES like you hear many especially women say, if they had tested me further for RA, Lupus, and other types of autoimmune illnesses, 

I believe they would have found the Lupus, which causes severe Migraines and that only thing that helps a Lupus Migraine for me is an injection of corticosteroids, to bring down the inflammation... although a Lupus Migraine is different than other types, which for years from the time I was 17 I had developed "Migraines"... so now that I am off on that tangent...(this article struck a nerve with me since Fibromyalgia was one of the "junk diagnosis" as some call them that doctors gave us when they could not "find anything else wrong" it was ONE of the many I was given and back then honestly, doctors had no clue what it was, just a at the time "rare mysterious illness" that had popped up at the very 1st I believe in Colorado. I will have to verify that, but a small town there "suddenly" had many of it's long time "well" residents suddenly come down with this list of symptoms" and it put many of them in bed, they had to quit their jobs, and it was really a nightmare... d to be 99% ACCURATE in determining whether you have FIBROMYALGIA!!!! NOT that anyone WANTS to hear that they do, BUT for so many years, especially WOMEN have been led to believe it was "all in our heads", or we were too "stressed" or "depressed" or, or ... whatever type of "so called diagnosis"... just to get them "satisfied"...

 I went through this years ago.. when I have the Migraines so badly they would send me to the ER - at times 3 or more times a month! I went to every "known specialist", every medication, from antidepressants, that didn't do a thing buy make me tired and worse.  I went through injections into my spinal fluid, into my "occipital nerves" at the base my neck, the "Imitrex" that I had severe side effects from, and come to find out, those medications I should have never been given due to my heart... I was even given "Thorazine" and the worst was that is given for "bi-polar" disorder, and it built up "toxins in my blood". One day at work, (when I worked in fact at the hospital in Corsicana in the business office - between 1990 to 1996... and I was with a patient at my desk and suddenly,

 I began "talking about all kinds of things" and had no clue why? I started talking about "bathing suits", and I "knew" something was very wrong.. I accused myself, and honestly thought I was having a stroke, and went down to the ER only to find the "Lithium" was building up so high in my blood stream, t was causing me to hallucinate,... then of course therapists, psychologists... even "bio-feedback"  and they even put me as an inpatient at the hospital for 3 days to give me some medication like Imitrex that is a vasoconstrictor.. and it was that "dangerous" I had to be in the hospital and wear a heart monitor while they gave me this medication by IV... It was totally insane what I went through between the mid 80's even until 1999 or so.


And as I said come to find out several of those medications I should HAVE NEVER been given. I had my 1st heart attack at 40 in 2000.... not all that long after all of those things took place. Yet for DECADES like you hear many especially women say, if they had tested me further for RA, Lupus, and other types of autoimmune illnesses, I believe they would have found the Lupus, which causes severe Migraines and that only thing that helps a Lupus Migraine for me is an injection of corticosteroids, to bring down the inflammation... although a Lupus Migraine is different than other types, which for years from the time I was 17 I had developed "Migraines"... so now that I am off on that tangent...(this article struck a nerve with me since Fibromyalgia was one of the "junk diagnosis" as some call them that doctors gave us when they could not "find anything else wrong" it was ONE of the many I was given and back then honestly, doctors had no clue what it was, just a at the time "rare mysterious illness" that had popped up at the very 1st I believe in Colorado.

I will have to verify that, but a small town there "suddenly" had many of it's long time "well" residents suddenly come down with this list of symptoms" and it put many of them in bed, they had to quit their jobs, and it was really a nightmare... NOW they have came a very long way in getting to the bottom of this still kind of mysterious host of symptoms, that can often mimic other types of chronic illnesses.

So here is the URL: https://stayfit247.info/2019/04/24/the-new-fibromialgia-blood-test-is-99-exact/




Thursday, April 25, 2019

(Open Letter) signed by over 300 pain specialists, other physicians and those in the medical profession to the CDC & how their "Guidelines" on Opioid Medication could drive Chronic Pain Patients to Suicide...



Are Federal Guidelines for Prescribing Opioids Hurting Patients with Chronic Pain?

(Open Letter) signed by over 300 pain specialists, other physicians and those in the medical profession to the CDC & how their "Guidelines" on Opioid Medication could drive Chronic Pain Patients to Suicide... (letter URL below)


https://docs.google.com/document/d/1RzQDSppUKhjiAsEmhW2WbTXlP5V8vJ4M_vBPQLKhK_8/edit

Information comes from the links here....
www.democracynow.org 
https://www.democracynow.org/2019/3/27/are_federal_guidelines_for_prescribing_opioids


For many years my Mom would ask me "How did I stand the severe pain of Migraines at first, then later, Lupus, RA, Joint issues that turned into replacements, and all of the severe chronic pain she watched me have to go through... she told me several times, that there was no way, she could endure what she watched me go through, that she would have possibly committed suicide rather than put up with all I had to go through so many years BEFORE I could get some "real help" after searching for a decade or more for physicians, diagnosis, medications and things to help me not have to live with such horrid pain in my life.... 

I always tried to reassure her that things would someday "get better"... and yet here we stand worse off than a decade ago when it comes to severe chronic pain... 


Wednesday, April 24, 2019

Wednesday’s Addition of My Daily Newspaper “ Autoimmune Arthritic Systemic Life”

Wednesday’s Addition of My Daily Newspaper “ Autoimmune Arthritic Systemic Life”



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





Women and Arthritis  

 

Arthritis affects people of all ages. Diagnosis of most forms of arthritis occurs between the ages of 40 and 60 years old. The rates of arthritis are three times higher in women than in men.
The disease is characterized by chronic joint inflammation. Stiff joints with limited mobility and pain are common symptoms of the disease.
Over 100 forms of arthritis are recognized with three of them being the most common: rheumatoid arthritis, osteoarthritis, and psoriatic arthritis... (see URL for rest of article)...  




Wednesday, March 20, 2019

Happy 1st Day of Spring & Hope Nice Weather Brings Less Pain, Less Flares & Feeling More Energy!


WISHING YOU AN AWESOME 1ST DAY OF SPRING! MAY WE HAVE WARMER WEATHER, LESS FLARES, MORE ENERGY, AND MAY WE FIND "SPRING" IN OUR STEP AND A SONG IN OUR HEARTS!




Wishing us all better days ahead. I .along with many of us have had a rough time this past winter from all of the rains, snow, ice, cold, bitter cold, and then from "warmer" to "cooler" over a day's time.

I found it interesting that this winter I spoke with many people who had never had a "joint" problem, or pain, stiffness and bad issues with joints. Yet, everywhere I went there seemed to be those that never experienced symptoms of arthritis, & other joint issues that have really suffered over the past several months...

It seems more people are beginning to suffer than ever before. I know I've pondered the reasons why may, that never had problems are now limping, stiff, in pain, and having major joint problems... weather? age? temperature? our polluted air water and land?, all of the "preservatives" in our food??? Makes you wonder for sure...

Monday, March 18, 2019

Now the Government wants to "have our "Social Media" used to determine if we are Disabled??????

https://themighty.com/2019/03/social-security-disability-benefits-monitoring-social-media/?utm_source=newsletter_disability&utm_medium=email&utm_campaign=newsletter_disability_2019-03-15


Talk about a crock! They will do anything to try and take away our benefits many of us worked for years and earned SS and Medicare, when after 25 years or more we become too ill to work and need our disability!


This is just absolutely ridiculous! I feel like they prefer we pass on, rather than try and live what life we have with our family, friends, spouses, and enjoy the days that are often few that are good.

Thursday, March 14, 2019

Thursday's Newest Paper about Pain, Autoimmune Illnesses and more...


Be sure to stop by DAILY and check out my Daily NewspaperbannerLife Chronic Pain & Autoimmune Systemic Diseases & Dementia®

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

It comes out new each day with all kinds of articles, news, blogs, information on the latest medications from Dementia Chronic Pain... Autoimmune Illnesses and more...

You Can sign up to receive a copy daily right to your email on the front page of the paper!

Thursday, February 21, 2019

Stelara® and Olumiant® Considered Promising by Lupus Expert


Stelara® and Olumiant® Considered Promising by Lupus Experthttps://www.lupusresearch.org/stelara-olumiant-considered-promising-lupusexpert/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+lrinews+%28Latest+News+from+the+Lupus+Research+Institute%29

"In Healio Rheumatology, Dr. Gregg Silverman, professor of medicine and pathology at NYU School of Medicine, provided an overview of potential lupus therapies in development.  He highlighted ustekinumab (brand name Stelara®) and baricitinib (brand name Olumiant®) as two drugs that look particularly promising.".....
from "The Lupus Research Alliance Research"

Lupus Research and "Gut Bacteria" - could certain ones be the Cause of Lupus in some people?

https://www.lupusresearch.org/bacteria-gut-may-cause-lupus-shows-study-supported-lupus-research-alliance/



Could gut Bacteria be one of the things that can cause Lupus? From the Lupus Research Institute New Information revolving around this situation?






Patients with lupus produce immune system proteins known as antibodies that attack their own DNA. Dr. Silverman and his team found that these antibodies also target Ruminococcus gnavus.

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, November 27, 2018

After All of the "Buying" Now is the Day to "Give" - #GivingTuesday!

Giving Tuesday! Now that we have given Thanks for our loved ones, friends, and had our meals, shopping for days, and all of the "buying" - TODAY is the DAY TO GIVE -  #GIVINGTUESDAY  

Pick One of your Charities or reasons, or places to give to and give in order that we may help to either cure illnesses, bring change to stop illnesses, to raise awareness, to feed the hungry, or whatever you may feel needs to be done or changed... Raise your Hands and Help to Giving Tuesday!






Tuesday, October 30, 2018

From RA, Chronic Pain, Lupus, to "PTH" labs "off" and more new specialists like an Endocrinologist (HAPPY HALLOWEEN)



"Chronic Illness and Pain - NEVER TAKE A HOLIDAY! Yet, I hope your Halloween is filled with "good spooks", wonderful costumes, party with friends, "candy but not too much".... and that your Autoimmune Illnesses will give you a reprieve for an evening...
Alas, then we can say "TRICK OR TREAT"!!!!!

Wednesday, September 12, 2018

Animal Pain Awareness Month! Our Pets have Pain too!

 Our Animals and their Pain is REAL ALSO!


We even as pet owners, don't "think" that one of our fur-babies" might be in pain. In fact my little terrier Peanut, "suddenly" started holding a back foot up, and he can't stand to put it to the ground. I was in the shower, and before I got in he was fine. But, when I came out int the living room, I noticed he was having a hard time getting up.... 


I went to him and asked him if his foot or leg hurt, but I believe it's a nail he probably hung while I was in the shower, and him and Bella were playing and he probably pulled a nail to the quick... They will NOT behave for me, if I try myself to cut them, and Bella keeps her front ones "groomed herself.. but taking them to the Vet is also a pain, they are just nuts in the car, and they are like two bulls in a china closet to get them out, in the car, out at the Vet, inside, and then to the car again, and home... But. when I saw this article in my newspaper today, it dawned on me, pets show :pain" in different ways"....


 I can tell which one of mine maybe hurting or not feeling well, but the other acts completely different. Anyway, a reminder to keep an eye out for a limp, or licking a paw, or Bells "whines" and mopes .... He is better today... I am glad. I thought I may have to take him to the doctor, and I FINALLY JUST GOT TO GET THE LAB WORK DONE YESTERDAY!!! Just 2 or 3 weeks LATE! I have felt like heck, this weather is really effecting my joints etc badly









Saturday, June 9, 2018

Keith Urban Lyrics, and trying to hold myself together after... 2 years today since Mom passed away, and the loneliness of the loss of her, Dad, Tazzy, Bub's and my love..



Yes, today and yesterday have been difficult for me. Yesterday, things, several things really hit me, right in the gut, literally. By the time I got home from Wally World, I was physically sick to my stomach, and felt horrid all day long. It was so bad, I never ate anything for dinner at all. I fed the pups, and they "knew" "Mommie" was not feeling well. 

They cuddled up with me on the sofa, and would not leave my side. of course today is the 2 year anniversary of my Mom passing away. In my mind, I've played over and over what our doctor we saw, usually had our appts on the same day, used to tell her. He would say that she was going to "outlive" him and I... not that he meant that "badly"... because of course with my health issues, he knew that it was a true statement, but he wanted my Mom to pull herself out of where she would "think she was too old for this, that or the other, so it was his way of telling her at the time "health wise" Mom was much more "healthy" than many of us. Yet, although she was, never did he even believe how quickly she went downhill when the Lewy Body Dementia hit.


 I had seen signs for a while, before she really got so bad. Here and there, being forgetful, losing things, not recalling events, yet of course at 80 years old, heck at 40, 50 and 60 years old many of us are "forgetful"... I blame the "world" we live in for the stress and strain, the toll our minds and bodies take these past 25 years or so... things used to be so much simpler, it seemed the "burdens" we have now, were not as they were back then. 


From the selfish ways many of us have abused our water, land and air, to technology that in ways is wonderful, yet in ways, it has caused families to not spend "time" together... kids and parents on their phones, the computers, playing games, you name it, we tend to "have something else more, better, important, than a family meal together, or a quiet night without a TV, phone, or computer. I realize that NOT everyone has given up what family time is, and it seems that some have tended to "go back" to that time... when everyone was at the dinner table, no TV, no phones, just dinner, and asking one another how their days were. I had those all my younger life... and until my kids were well into being teenagers, for the most part we also spent nights together, around the dinner table, talking to each other, and caring. I know that has carried on to my daughter and her family. Of course we are "busy" but for the most part, her children, husband and her spend their dinner time together, sharing in one another's lives. There is so much that I think about when i think of my Mom... 


Mom never "gave me crap" about tattoo's, belly rings, tongue rings... she may have not agreed, but, she knew that I had my own personal reasons for all of it, and she was never one to put me down for making those choices. Mom spoke her mind though... anyone that knew her, knew that what came out of her mouth, was her personal thoughts, and she expressed them. Not that it was always "in a proper place" or said in a "proper way" but it was Mom, and you had to accept that part of her. So often, she was overly concerned about my health and me. Sometimes to the point I think she worried herself way too much. 


But, she knew the pain and suffering I endured, mentally, physically and emotionally, and many times she told me, she could never "brave" what I went through daily. Yet, I always told her, that she need not worry, I am a survivor, and what is, what happens, why it happens, I don't know but I do know it serves a purpose. She was so proud of me... when I went to college and worked full time, and took care of my home and family, she was my greatest fan! She urged me to oil paint, and especially all of my poetry and writing. When I published my first two books, she cried tears of joy, for she always knew I had something very special, that gave me the words to write, and how much I touched the hearts of those around me. She was always the one to encourage me, whatever it was, she knew I could do it. LOL, so often she told me I should have went to medical school. I would have been such an asset to many as a doctor, or in research. 


When I got to go to Washington DC with the Arthritis Foundation, that was a moment that she also cherished with me. My walls around my desk are covered in the awards, the recognition, the paper clippings when I had an article in our local paper. The Proclamations for Lupus, for RA, signed by our Mayor and some signed by our Governor. Mom was my best friend, after I was alone, she became the one that stood with me, that talked to me, that helped me carry on, even though I was in such a mess after being separated. She understood, because after Dad passed away, Mom was very frightened of what might happen. Coming back to TX was a ver difficult thing for me, I never wanted to leave Seattle, but she needed me, so I came back here to help her. I miss her every day, and even though Dad passed away n 2005, I still miss him. 



Often thinking to myself, that we would be fishing today if he were here. Or I would be visiting, or we may be going to the casino tomorrow if she were here.... all of the things and many many more that I so miss... from the little things to the small things, after the loss of my parents, losing my Pug Tazzy, and then losing Bub's after I broke my hip.... losses that cut right to my core, and then Jim no longer here... my world on some days seems so upside down..... So, Mom, I hope you know how much I miss you and Dad, and there are days it is s struggle... but I put ne foot in front of the other and try to----- carry on



Saturday, April 28, 2018

Fed Up With Pharmacists, Doctor's, Lupus, Medications and Fed up with too many side effects! Loving Fishing, and Better Weather


Was out at the lake yesterday, but the wind picked up the wrong direction and I had to come home. I can't stand in the sun due to the Lupus and meds etc... and I HOPE I finally have some sunblock for my FACE that DOES not cause breakouts. I FINALLY ALSO GOT HUMANA AFTER 4 WEEKS OVERDUE OF MY RA MEDICATION BACK ON TRACK! THEY ARE SUPPOSED TO DELIVER IT TUESDAY! I hope so, my fingers, THUMBS ARE THE WORST, WRISTS, ANKLES, EVERYTHING IS SO STIFF, HURTS, I COULD NOT EVEN BUTTON OR UNBUTTON MY JEANS OR ANYTHING THESE PAST FEW DAYS... 

I can't cut up fruit, and even trying to be out yesterday cutting a few tree branches down for the trash, I accidentally hit one of the branches on my leg, and it was just a little nick, and it bled everywhere. I had to come in and I already have spots on that foot and ankle where mosquito's bit me and it itched so badly, I've got a rash where I scratched it in the night... So I've had to bandage up my foot so much it looks like I cut off half my foot!!! And it's just a few scratches mainly, but if I don't the pups want to lick it, and then I was outside this morning, weed eating and spraying the weeds in the back, raking up and so forth. So, I fear infection so badly. Ever since the incident on both thighs where I had the cellulitis, that turned into "holes" in my legs, and I still have terrible scars, that although I went to the wound care people for 6 weeks in Dallas, they still never really healed where they covered over and look nice. I am almost embarrassed. Between those, the cuts on my knees from the replacements, and now for some reason, I have "spider" veins so badly in my ankles they look horrible!!! And it is so odd, I never had any problems, then about a year ago or more, 

I began getting them all over both ankles. I don't know if me spraining them so badly, that Sunday of Mom's funeral, and I had already sprained the right one twice before, if they "broke" those vessels that badly or what, but they are so ugly. I've asked the doctors and they told me that insurance probably would not pay for it. But, they also tend to "seep" under the skin, so at times those ankles where the spider veins are so bad will "weep" and cause my ankles to swell. I know they have new treatments now. They used to put saline through them, and they said it hurts like hell. But, now I think they can "laser" them... I am thinking about going back to the foot specialist I saw with my ankles being so badly sprained they would not quit hurting. Plus the right one would swell so much, I could not walk on it. He put an injection of corticosteroids in it, and that really helped to stop the swelling and pain. But, the spider veins make my ankles look like I am an old, old lady! I guess though after all of the surgeries and scars from them, I get to where I don't care if people think they look bad or not! I refuse to COVER UP and burn up and not wear shorts, when it's hot! 

Anyway, been a busy week, and I've been busy every day doing something. I still have not done  that stupid lab work, but it has to be fasting, and I get up so early, I can't go for hours without my coffee or tea... last time I ate breakfast early, then went for 8 hours without food and then went in that afternoon for the blood work, rather then trying to go in at 8AM. And I got kind of peeved at my Cardiologist last week. ^ months ago when I was there, we talked about putting in a pacemaker, due to my heart rate being so slow especially at night. It will be at 43 beats or less at times, and she suggested since I take the medication for the "extra beat" I have she could do the pacemaker. But, of course once it's there it is forever. So, this time she talked about sending me to a "heart rythym" specialist. She said he could possibly try a "different medication" or decide whether to do the pacemaker.. Well I said, 1st of all, I am taking too many meds as it is and I am just about ready to throw them all out the window and use "natural" supplements, because each time we try a new medication, I have problems from it. Then she admitted she DID NOT do the "medications" this specialist does "because there are so many side effects"... so I said well then, "if" I decide I am "bothered" too much by the arrythymia THEN she could DO THE PACEMAKER AS WE ALREADY TALKED ABOUT! She was the one who just told me 6 months ago,, the pacemaker was the simplest way to "correct" the slow heart rate!!!!! So, WHY WOULD I GO TO YET ANOTHER SPECIALIST, THAT FIRST OF ALL UNLESS IT'S LIFE OR DEATH, I AM NOT TAKING ANY NEW MEDICATIONS!!! I am FED UP WITH THEM, AND ALL OF THE SIDE EFFECTS THEY CAUSE!!! 2ND OF ALL, she can do the pacemaker right here in my hometown, as a day surgery, and I can go home in a few hours. I DO NOT NEED OR WANT YET ANOTHER "SPECIALIST" THAT I HAVE TO GO TO DALLAS AND TRAVEL TO SEE! It's bad enough with the Rheumy, Pain doctor, and the Orthopedic surgeon, without adding to the list!!!!!

Friday, April 20, 2018

"The Texas Blues" written and sung by me


I don't have the guitar or me playing the song but he is one I wrote back a while ago, and added to it lately... I am a bit off key LOL... plus I've had such a sore throat lately, I have a difficult time trying to sing.. after the last neck surgery, he really did a number on my vocal chords going in through the front of my neck, so I've not yet gotten my voice back as it was and may never get it back all the way....






"The Texas Blues"copyright 2010 Rhia Steele





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