Showing posts with label Lab Work. Show all posts
Showing posts with label Lab Work. Show all posts

Saturday, September 26, 2020

More "SPAM" calls than ever, "waiver temporarily of registration in TX on title renewals, fed up with my doctor (rheumy) & as the "World of Rhia" turns

           DOES IT EVER END????

From COVID, to sudden doctors acting "odd" (my Rheumatologist), to so much pain, weather changes, MORE "new normal or temporary changes due to this Pandemic... and as the "World of rhia and COVD turns....



... All of a sudden he seemed to act as if "he was not sure" about my diagnosis!!! AFTER 10 YEARS NOW OF SEEING ME AND THE CRAP I HAVE AND AM STILL GOING THROUGH WITH ALL OF THE JOINTS, SWELLING PAIN, LOSING USE OF MY HANDS FINGERS BAND SO ON... I got "no answers" other than "more lab work" well hell we just ran THOSE EXACT SAME TESTS ON 9/8/20 THE 1 THING I USED TO LIKE ABOUT HIM HE DID NOT PLACE "EVERYTHING" ON LABS.. LIKE SOME DOCTORS.. NOT ALL Lab work can "tell the story" same way I've been through more CT Scans that "look" one way,, then they do surgery to find out that joint WAS MUCH MUCH WORSE THAN SOME CT SCAN WAS SHOWING!!!

 I am FED UP!!! with ALL doctors!!!!! NOT ONE TIME have they done a CT, X-ray or when I could have other tests the may not show how bad it was... until I was in such pain I was just going nuts.. they surgery and find iust things are much worse than some a lady just talked about going through 7 doctors or so, and many tests and they kept telling her"nothing" was wrong..she..finally she went to the cancer hospital either in Houston or up in OK, and they found out she did have cancer and those oncologists DID find it & CURED HER! I am just fed up further than I can even talk about!

It is time for US to STAND UP FOR ALL WE BELIEVE IN & NOT allow the "bad guys" to win! We never KNOW from 1 MOMENT to the NEXT how many "moments" we have left, thus loving, giving of self, voicing your opinion in the right and honorable way, do your part by voting, support family, friends, and those who have been through fires, hurricanes, COVID-19 more than ever, now the upcoming FLU,


TEASING SOMEONE ABOUT THEIR HOME, OR WHAT THEY EAT FOR LUNCH HARMS THAT PERSON & YOURSELF.. AND WHAT "PARTY" YOU "BELONG" TO DOES NOT DO A THING FOR OUR NATION.. IT IS THE PERSON IN THOSE POSITIONS OF OUR GOVERNMENT THAT MAKE THE DIFFERENCE. I just saw an email where kids are TEASING kids with "Acne"... how horrible is that? Rather than "demean" them find a way to help instead. It could be you!

Has anyone gotten their renewal for their car? It is rather confusing... usually ( and the regular form is in there) we have about a month ahead to take car of it getting inspected, and then can finish u the registration in person, online or in btheb mail which are all "usual" ways. This time mine hada note in it about COVID and giving us like an "extra" month or actually "temporarily suspended"nto do this. But, they also now are offering all different licence plates & get a different plate for a "50.00 off rebate" (go figure) I am just confused as to what to do and how... I guess the beat thing is to see if they have UPDATED THINGS ONLINE BEFORE "JUMPING IN"....

Friday, December 9, 2016

WEGO Health Blog Challenge for Monday 28th, 2016 - 5 Challenges and 5 Victories

Challenges and Victories (the WEGO Blog Challenge from November for Monday 28th, 2016)

As many of us have faced, it always feels as if the challenges tend to stick out stay with us, rather than the victories. I feel that is more likely about "Human Nature". As humans we tend to "dwell" on the things that feel lousy to us.


As far as "Challenges - the 1st Challenge was truly facing the fact, I DID have not just ONE but "several" possible Autoimmune Illnesses, of which any or all, could cause all kinds of havoc in my life.

2) Facing the tests, all the labs (my 1st go round with lab work, they took 18 TUBES of blood, I am a difficult stick anyway but had to go back 2 or 3 times because some of the blood did not get to the lab quickly enough and was ruined before those tests could be ran.

3) How many so-called "Rheumatologists" do NOT have the "same thoughts and mindset" on Lupus, RA, Sjogren's and all of the other Autoimmune disorders. I found that some did not deal with "ALL' but possibly only dealt with one or two of them. I also found out that MANY doctors (specialists) ONLY went by "blood tests". IF you did not have a "positive lab on RA for example) some of them really were not convinced there was a "sero-negative" RA. I went through at least 7 or 8 Rheumatologists BEFORE finally finding the Rheumatologist that fit my illnesses and needs.

4) Trying to "find" the right medications, then trying to get the doctors to allow me to try them, and the insurance to pay for them, and then finding that medication or medications that even worked for my particular symptoms.

5) Losing my own "caretaker", then becoming a caretaker twice, all the while letting my own illnesses, continue to deteriorate my joints, and body. After putting off surgeries, now I facing further degeneration of my cervical and lumbar spine. I've come to find out that losing all of my teeth, all of the joint replacements, surgeries, many of my other illnesses, are ALL due to the autoimmune diseases and medications also. It seems there are so MANY different health problems that can be caused by AI diseases and/or the medications.


1) Finally getting "diagnosed after MANY years of not one physician "getting" that it was Autoimmune related issues. 

2) Becoming aware that I was able to take my illnesses, become a "voice", advocate, Ambassador, for some of these, and that my blog, writing, and my books; along with Social Media really gave me a chance to MAKE A DIFFERENCE!

3) Getting to go to Washington DC in 2014 with the Arthritis Foundation! That was a dream come true. All my life, I had said I wanted to stand on the White House steps, and TELL MY STORY! Basically that is what I truly was able to do. I was able to "tell Congress" what my own personal journey through hell and back was like.

4) Finding the ONE Rheumatologist who has helped me, along with my Primary Care Physician, who Thank goodness was the physician who actually "found" my Autoimmune Issues.

5) Continuing to be able to slowly but surely "move forward". At times these diseases are "dammit the hell" bad, and put me on the sofa for even a week or more. BUT, so far, I am able to put one foot in front of the other each day, and even though the pain, and all of what comes with these illnesses can get horrible, I so far am able to do some things myself, realize when I can't, and be "smart enough" to admit that I need help with certain things. 

continuing with another "Victory"

For the most part, I feel "fortunate" to have somewhat of a "victory" over whatever happened to me in 2010, when I was so extremely ill and in the hospital for over 6 weeks having several surgeries, even a 2nd Heart Attack, yet survived to come home, take months to really "get better" and still be here right now to "tell about it"!! 

Tuesday, September 8, 2015

The "NEVER ENDING" Saga of Rhia, Autoimmune illnesses, cellulitis, abscesses, and feeling the pain, disgust, frustration for others like myself that seem to NEVER get a break

This is a post I sent to a friend on Facebook... she also is just having one hell u va time, dealing with "crap", illnesses, and all that entails when you feel life NEVER gives you a break! I realize some of it I've already posted, but believe me... I feel it is totally worth repetition... so others KNOW they are NOT alone!

  I SO, SO, SO can empathize with you and how you feel. It has been so much the same for myself. Between the already issues with Lupus, RA, and so forth, then the accident last year in March that my husband was in, now he has left and moved back to WA state.. we are filing for a divorce and honestly I am NOT sure to this moment WHY? Then I need lower back surgery, then my Mom in the midst of me finding out what was wrong with my hips and legs, which was my back, she comes down with a severe hip issue, that also turns out to be her lumbar spine also. She is 80 years old, and they do NOT even want to discuss surgery on her...but they are trying with medication, PT and supposed to do some epidural injections on her. About the time we got those scheduled her last living sibling, a younger sister, passed away of a rare stomach cancer, she had been fighting for a couple of years, then BOTH of us come down with some kind of stomach virus, & I spent several weeks of it seeming to come and go, and even got ill Sunday morning...I was so upset, I felt "fine" was dressed, and was about to walk out the door, and my stomach felt "odd" and sure enough, I almost did not make it to that bathroom and was sick to my stomach again, out of the blue... then I have been dealing with a "lump" on my mid left thigh now for about 9 weeks... my PCP thought it was cellulitis, and of course with my immune system being so compromised, he immediately put me on TWO antibiotics, which helped some, but after 3 ROUNDS of them, 7 days each, he wanted me to have a surgeon look at it, and cut it out...well, I had a hard time finding a surgeon close enough that took my insurance, finally did, but he could not see me for over a week! So, all of a sudden this "lump" that showed no signs of an outside infection... has not been red, warm, or appearing to be infected on the outside, but a week before I was to see the surgeon I woke up to it being very red, warm, and appeared to almost be trying to burst open... so I quickly called mt PCP and told him... so he put me on another round of the antibiotics until I could see the surgeon. Well by the time I saw the surgeon which was last Friday, it has abscessed inside, and he had to "CUT" it open, and let all of the infection out of it! He also sent some to be cultured, and I must have had "two layers" of infection. One kind of shallow, but another much deeper. Now he did this in his office, just injecting lidocaine in it, which hurt like hell and burned worse...and I am "tough"... nothing usually bothers me... but then I had to take the bandages off twice daily, after getting home, and "clean it out" with Q-tips and peroxide... when I took the bandage off the first time on Saturday, OMG I have a HOLE in my thigh deep to it almost feels like it is to my bone, and wide... like 2 inches deep and that wide... I almost could not do it, but I knew I had to.. so I did that and then finally yesterday, it was not quite as painful so I took a shower and used antibacterial dial liquid body wash which I had already been using, and he said to allow the soap and water to get into it, and clean it out... I did, and it hurt some but not all that bad... but then this morning, I began to take off the bandage and it again looked awful to me... it is still draining a bit... but I see him tomorrow thank goodness... now he did not address the "other lump" on my right thigh, almost in the same spot as this first one. It came up after my PCP began me on antibiotics, but I never said anything about it, thinking that medication would take care of it also... well it is still there, a bit larger, and I fear it may be the same thing. I had told the surgeon's nurse Friday, but I guess he forgot about that once he was working on this other one. So, I've got to point it out to him... it is just like the other one... it shows no "outside" appearance of an infection, it is just a lump under the skin.... to top that off my Rheumy wanted to put me on a new RA Medication, but before we could change I had to do a whole entourage of blood work, TB testing, Hepatitis, etc... well all was "okay
accept the TB test... that particular test has to be done just a few hours after the blood is drawn or it can come back not accurate... so mine came be "indecisive"... so I needed a damned chest Xray to show the test was just off... well I could not again find anyone close that took this stupid insurance, so I finally was just going to pay our Urgent care to have it done. Well, the order got misplaced that my Rheumy sent them..then due to this lump, my Mom, my Aunt passing away, I got delayed in doing the X-ray... so when I went out to have it done last week, they had NO order, or they just could not find it, and when I called and had my Rheumy fax it, it was for 2 views instead of one... so I did not want to have to pay double if it was not necessary, so I had to get hold of my Rheumy... and have them fax a new order for one view... I FINALLY got that done, and now due to the lump, the infection, the delay of the Xray... I've not had any RA meds in like 9 weeks or more!!! So, my RA, is so bad.. And within all of that is even more crap that has and is happening... and I am just frustrated, upset, disgusted, mad, and all the things you feel... it is like some of us NEVER get a break... EVERYTHING in my life has always been "complicated".... and it is just too old... for sure....there are days I want to crawl under my bed to never return.... and between all of that... my Pug has also had stomach problems and been sick to her stomach off and on also....

Wednesday, June 10, 2015

Lots of thoughts and prayers needed now...

I can't really go into lots of details at the moment, but there are some really life changing things going on at this time for myself, and my family.

When you are chronically ill, and or in chronic pain... at the first you may never have the thought about HOW MUCH your life can change. Then as the doctors visits, medications, tests, surgeries, fatigue.... and so many things change, physically, emotionally, mentally... all aspects of what used to be "normal"... can be gone within a breath's space...

Then you have two people, one that has been "healthier" that could stand in for the other, when illness or flares hit... and all of a sudden that person is also either as ill as you, or even worse. So, that is when nothing is the same... you may think things will improve, we will find a "new normal".... and it just takes time, patience, tenacity... will power, respect, and love to finally find whatever can go on in the future. Yet, a "dam" appears... the river of life that you felt was so awesome, suddenly turns into a raging force, driving one in one direction, a fork you may say, and the other, suddenly winds up in the opposite direction.... and that is when "trying to piece back your life" can either be not really going to happen, might happen, or usually you finally KNOW, things must change... and change drastically, for both of your sakes...

As I said, I can't go into lots of details, and for now, I think those that do know me, and have an understanding of all of the drama, the illnesses, surgeries, doctors, and pain... from the physical, to the emotional, mental, and daily life - has all bundled up into a huge knot, and you just cannot manage to go on that way.

We are NEVER guaranteed anything but to "live" and then to "die".... in between things can be smooth, even, rocky, a landslide, and so often we are left wondering why the hell this happened? All of the questions, why am I being punished? Am I a "bad" person? Why can't I just have a break? Why can't something be "easy" for a change????

None of us know that answer. And throughout my entire life, most EVERYTHING has been a challenge. There are not many things for me, that have came "easy"... I worked, fought, crawled up the mountain, as the stones dug into my knees.... and slid back down again.... and I do know that only through FAITH and HOPE can I continue to one step at a time, moment by moment, then hour by hour, day by day.... week by week... and then months... years... and one day when I am no longer on this Earth... then all shall be revealed.

So, I WILL continue on with my 3rd book... and hope to finish it up on schedule by the end of the year. I WILL continue to be a voice, activist, advocate, and ambassador...
Lord willing, and my health continue to half way act right.... and hopefully the brain fog, pain and suffering may hopefully have something done about soon... either by surgery, by new medications... and so forth...

I shall give more information as the next days go along... so PLEASE continue to come and join in on my blog... and for those who have always been here to support, encourage, provide strength, faith, and prayers... I am so very grateful for all of you....

Tuesday, February 10, 2015

Always Looking for the Sunny Days even though the Cloudiness and Fog hang Around... dealing with symptoms...

Okay, well I've missed out a couple of days dammit with this stomach mess. Not sure what is gong on. But, I do KNOW I am SICK of it! I am a bit better today so far. I've tried to not drink or eat anything I think might be causing it so badly. The vertigo just has to run its course usually then gets better. What I am concerned about, is why this time it is so bad, and why the meds I take for it are not calming it down as usual. I am still doing some research myself and I am sure since I am honestly WAY OVER DUE for A scope to check out my esophagus and stomach, that will probably be where I am headed. I know I have Barrett's Esophagus. I really should have had it scoped again over a year or more ago. But, with everything else, I keep having to postpone it. Now with all of the problems I have, I am concerned if the dysplasia, where my actual stomach lining grows out of the stomach and into the bottom part of the esophagus, and can cause cancer. But, I just dread any other "surgeries" etc> I am so literally sick of doctors, medications, insurance, pharmacies, no one can get their crap together. I've had an ulcer before thus one of the reasons I am on Nexium, plus of course GERD. but even the Meclazine I take for nausea and the motion vertigo. It just seems what ever is going on, still to me is totally separate from the Lupus, Sjogrens and RA. One good piece of news! MY ORENCIA FINALLY CAME IN today! After being off of it for at least three weeks, I feel may have some to do with how I've felt this past couple of weeks. When you begin to research Lupus, Sjogren's, RA, FM, ME CFS. and any and all of the other AI illnesses from MS to Diabetes 1, there can be a million symptoms, all of them similar, and they may or may not have to do with the autoimmune illnesses. Of course the problem I can already tell from that is patients (meaning us) and our doctors, whether PCP, Rheumatologists, or other specialists, tend to get "lackadaisy" and "automatically" no pun intended blame it on Lupus, RA, and so forth. So, each time a new "symptom" arises, all too often I feel it is kind of "'blown off" as to whether there is something "new" causing the new symptoms, or is it indeed the AI's. I realize that is is very difficult, and in some cases probably almost impossible to defer one from the other. Even with many types of tests, lab work, studies, and so on, still there may not be an "answer" other than due to one of the AI. That is scary though. What if, and I am just "saying" what if myself, or anyone with stomach issues and the nausea, vertigo and so forth left it unchecked, and went on either with the doctor knowing or just figuring on our own, it was "just the AI" and more symptoms, and it was something worse? What if it were stomach cancer, or some type of other cancer such as leukemia, or the GERD had really done a number on my esophagus and that dysplasia is much worse than it was. Or what if it is yet another autoimmune illness, or any number of other chronic diseases that can start out with the exact same types of symptoms. So, even though none of us want to jump the gun per se', running off to our doctors each time one little thing pops up or changes, plus we are all in the place that, oh well, they will blame it on the Lupus anyway, yet something else that may need other treatment, surgery etc done. A great for instance was my double hernia's early last year. I was told by three different doctors those "lumps" were nothing to be concerned about, and they more than likely were not hernia's. Then I still feel uneasy, so I go to a surgeon, who sure enough says right off it is not just one hernia, but I had two... one on each side...So, had I listened to those first 2 or 3 medical doctors who just seemed to not want to really find out for sure, they blew me off. Then I do find out I have hernia's just as I had suspected all along. We for the most part, have a "gut" feeling, again no pun intended, about our bodies. For those of us with chronic illnesses, we especially tend to watch out like a hawk for any type of new symptom, or something that seems to be "off" and not quite right. Yet, often times I know for myself, I go into the physician's office, and I just feel like if I am going to get the same old answer, it is the "Lupus", "RA" etc... then why... and if it isn't or they feel it may not be, then here goes the 50 "shades of Testing" that runs up expenses, and takes away our precious time. Even with many new tests, there still may not be any "one" answer, if one at all. I have found that even with the double vision, that started so suddenly out of no where, and has gotten to where I have it all the time, unless I wear my corrective glasses with the prisms in them, I have constant double vision. Some of you may recall the entire ordeal I went through for at least 6 to 9 months or more. I saw 2 or 3 different eye specialists, a couple of different neurologists, my Rheumy, my PCP, and in between I am sure probably someone else. I also went through exam after exam, test after test, loads of blood work and even a "biopsy" on my temporal artery. The specialist felt I had temporal arteritis, and it did make sense. But, the very treatment for it was something I was already taking, just not in as high of a dose as they use on that illness. So, I also found out the biopsy comes back all too often "inconclusive" thus I may have had it, but they didn't really get the exact YES, but it was not "negative" either. It took months and months, a couple of different pair of glasses, and just all kinds of neurological testing. One of the Neurologists said he felt I had Myasthenia Gravis which is another autoimmune disorder, and that will cause the symptoms I had and also explain where and why they were showing up at that time. Yet, still there is no one exact science about Myasthenia Gravis either. Just like MS, which I could have also, still there is one test that they can do, and again it is not always "exact"... It might be negative, and I still have MS, or I may show up positive, and be negative in reality. So, as we hold hands, together one next to the other, remember for one, you are never alone... there is someone out here, that can empathize with you, and totally understands because they are also experiencing some of the same things, whether it be illnesses, or any other number of other explanations. You can bet money on that there are one or usually many more of us with the same situation. Gosh, I can count on my hands, toes, 50 times over at the number of people who have been down almost the same road as I and the rest of us have. I've managed to feel "well enough" today to get some cleaning done, baked a lemon pound cake, did some other cleaning here there and yonder, vacuumed, and even colored my hair (of which I am not thrilled, it is way much darker than the last time I did it with the red).... but I also know it will fade out pretty quickly, and then won't be so very deep red... the color I used before came from Avon, and they quit making the product line! Plus I didn't keep the number or part of the box so I could try and match it up and I picked what I thought would be close, but it is still much deeper reddish/almost maroon than I expected.... so I hope maybe, my stomach is settling down, along with the stupid headache. I need to run errands and get to the market tomorrow, so I need all of the "wellness" I can get hold of for tomorrow. It will be one of those busy days. Anytime I head to the market and have a "list"... a long list, and then coupons, that means a longer trip that runs into hours if I have lots to stock up on and to use coupons on....