WEGO Bloggers Challenge for Saturday 12th - Time to "get real" with your doctor

Saturday Day 12, 2016 - WEGO HEALTH'S BLOGGER'S CHALLENGE - WHAT DO YOU REALLY WANT TO TELL SOME OF YOUR DOCTOR'S AND DON'T HOLD BACK!

Well for one, I am sick and tired of doctors thinking that just because I patient may do research on their illness(es) or look things up, I cannot fathom a doctor getting upset or calling a patient a "moron", Layman, and telling them "you do not know what you are talking about".

I agree there is a OVER ABUNDANCE of some really ridiculous information online for everything! Not just the medical field, but just about anything you want to search for.
One has to learn how to "think" about what you read or hear when it is NOT a specialist, and try to weed out what really is silly, or does not apply to your case.

Plus for myself, when I go into my doctors offices, and ask questions or tell them about something I've read online, often times "most" of my research, is usually almost right on target. Not always, and I have one physician that LOVES and "educated patient".

But, one is a complete jack-ass to put it like it is, he ignores anything I have to say, he tells me I am basically stupid, and leave the "doctoring up to those who do have the "knwledge and education" to do the "medical work".

I SO would love to tell him, that I have been to "some so-called" doctors, that not being narsaccist but I KNE more than they did about some things. When you are chronically ill, many of us DO KNOW more about our conditions than doctors. WE KNOW our bodies, we know what feels right and what feels wrong. We understand the articles, even bloggers posts we read, and they also know many things our physicians never are even taught, especially about autoimmune diseases. My own pain doctor will admit, that I know more than many medical workers, including doctors, nurses, PA's, and NP's when it comes to my own conditions, because I do research things, I do decipher what is "not right" and what may be deemed something critical in my situation.

I would love to tell every doctor I have been to and others, that they NEED to be EDUCATED MORE on autoimmune and rare illnesses, because in many cases now, WHAT WAS RARE, is NOT that rare anymore.


"THAT IS MY STORY AND I AM STICKING TO IT!"


#HAWMC

#HAWMC@wegohealth

Trying to find "balance" between being a "Patient" and a "Caretaker"... a writer, a blogger, an Author, an activist, an Ambassador... and battling Lupus, RA, Sjogren's, Lumbar spine problems and chronic pain

I WILL BE SO GLAD WHEN THIS WEEK IS OVER!!!!!!!!!! I has been something everyday this week and today once again. AT noon Mom has an MRI on her lumbar spine. She HATES MRI's because of like many of us the noise and being so confined & be still... so I hope she makes it through okay. They did tell me that there is a doctor there at all times, & if a patient is extremely anxious, he can administer a really light sedative just to make them feel a bit more calm... where was that the last MRI I had??? I am not "fussing" about helping Mom out at all. That is not the meaning of this post. I know for her it is very difficult to go through all of this. In fact she missed PT yesterday.  Even though she has the schedule hanging right up on her calendar, she got confused I guess, so I went at 1:45 to pick her up, and she was not ready..... and when I said something about PT, she said today?? I said yes  - Mon. Wed and Fri.... all of this along with the medication I think the pain doctor gave her to take at bedtime so she can sleep, (she had not been sleeping due to the pain for weeks) it may have her a bit confused. She so rarely takes anything but basically blood pressure meds, potassium, Lasix, and Crestor... so having other meds in her system, I think has her kind of fuzzy.... hell I am FUZZY MINDED ALL THE TIME (LOL)!!!! Anyway she does know I am picking her up at noon today for the MRI... and then tomorrow she goes for the PT again. What I am seeing and thinking, if she goes a couple more times to PT, just about all they are doing for her, and some of it she is doing at home a couple of times a day anyway, she could probably go twice a week, and be fine. She can do the rest of it at home... and I do know she has been doing the exercises they showed her... I think that in itself, just not having to run out 3 times a week in this horrible heat, may help some. It is honestly so danged hot here, and we have a butt load of humidity to make things worse... I can't even stand in my kitchen giving the dogs their medications without sweating... insane. I have been turning the A/C off early when I first get up, then back on about 11 am or so, but I went and turned it on the "humidity" setting for now to dry out this "sticky, damp" feeling.... anyway, things here are nuts... I take my last round of antibiotics today for the cellulitis.... but the lump is not gone... so I am not sure if that is okay and the medications will continue on to work to get rid of it, or if it will just be a lump there for awhile, OR if I need more antibiotics.... I HOPE NOT the 3rd! They have really put me into one helluva tail spin with my stomach. Plus make me feel so tired and fatigued... on top of what my usual is, and I am just drained about all of it, but I don't want to wind up in the hospital either.. Mom will go in for the injections once the MRI is done and our pain doctor has the results. I figure sometimes next week, which will mean a VERY EARLY trip to Dallas, and way up Central Expressway to a surgery center on Greenville Avenue... so I don't look forward to that one either. I've just made this trip myself for my injections, and then the discogram a few weeks back... so once again, off to Dallas...

I am still quite puzzled as to why after all of the MRI's, CT's, X-rays, and tests on my lower back all these years, that not one test ever showed me missing the "lamina" that I was born without.... I've always said I don't think some of these scans and so forth are nearly as accurate at times... I can't think of one of them that was very accurate on me.... every time I've had a surgery, once the surgeon is actually looking inside, there has been a great deal more damage than what any "scan" ever would show.... even with my neck surgery, shoulder... knees... any of them... in fact I believe it was my cervical spine, the severe damage was in a "hidden" spot that the CT could not pick up from my understanding... so that makes me wonder how many of us suffer and doctors do these tests, and they don't look so bad, so they think we are just "making it up"... or it is not bad enough to warrant surgery and so forth. I have certainly fought with one doctor for 2 YEARS before they finally fixed my left elbow. I had about 19 steroid injections in it, before I found a doctor that did surgery right away, and sure enough the tests didn't show all of the damage....

I've also now am having issues with my right hand and fingers worse, but both hands and fingers. I've got swelling that is usually not where it is now, and I can barely stand to type for very long, and they hurt almost all the time. Always something... so to all have a good day.... I've got to do a few more things and then get ready to take Mom for the MRI.... more to come

"I feel as if I should have a full-time TV "Reality Show".... called "Chronic Illness/Pain patient - Caregiver This is MY LIFE! REALLY!

Doctors Visits, Sleeping Late of course, thoughts on Autoimmune Illnesses, and why some of us tend to get them and others don't....

Well of course... I am supposed to go to my PCp and Mom has an appt also... this morning, hers at 10:15 and mine at 10:30  I had the alarm set even though I am always up early and of course.... I SLEPT LATER than I wanted to and teh damned alarm did not go off.... LOL... tells me what kind of day it is going to be, thank goodness the appt is local and not but about 10 minutes from here... but I wanted to get some things done before showering and getting dressed... guess those will have to wait until later today or over the weekend... I am feeling either like allergies are acting up OR I am coming down with a "summer cold" or something. I've woke up and even last night going to bed with my head kind of plugged up, or feeling like I couldn't breathe as well through my nose, and I had to get up in the night 2 nights snow and use my nasal spray... and of course then over sleep.... I am in the process of getting our Mayor to sign a "Pain Proclamation" for September Pain Awareness Month and they are have "Beautify in Blue" Theme. If I get the city to approve it, I can put up posters around and tie blue ribbons and so forth in September around as long as it is okay with our Mayor and City Counsel. I really want to do this.... I've posted things about Arthritis and the Arthritis Foundation and I've had some Lupus things I've posted off and on... I even have 3 Proclamations from the Mayor 1 and 2 from the Governor of TX signed for Lupus for 3 prior years. So, it would be nice to get my city involved in the Pain Awareness Month. I know we have MANY chronic pain sufferers, lots of people I am sure with autoimmune illnesses, such as a cousin who has RA, and I hear all the time around town about people either with the illnesses, OR they have family with especially Lupus... in fact I've wondered about the Lupus several times. It seems Ennis has more of a tendency to have "Lupus" patients more than RA, or some of the other autoimmune illnesses. I know a couple of girls  went to school with had MS some years back. So, it would be really interesting to find out more from either a "poll" or study of some sort about "why" we have more of one than the others etc... I have my own thoughts that all of these AI illnesses (and I include FM,CFS and ME) in the list... that are partially "heredity" and then also partially caused by something we either eat, breathe, have in our air, water, food etc... that suddenly "awakens" those illnesses in some, and not in others. Of course I am very much the "laymen" when it comes to this, but over the years of my own plight with the illnesses, all of the blood work, when my symptoms seem to be at their worst, why some meds work and some don't etc... all have led me to believe... kind of like cancer... our immune system could be "wired" from birth to have more of a tendency to suddenly have something in life happen to cause them to act up. From stress, which I know for a fact makes me much worse in flares", to having something very dramatic happen to you in life, a very bad illness, an accident, something that puts so much stress on your mentally and then of course effects you in a physical manner also... and then that happens to cause whatever may have been staying "in check" for many years of your life, suddenly just runs "amuck" in your body. What gets me is that for years I was told due to all of the joint problems, that I had DJD and DDD, degenerative joint and disc disease, and at that time usually that meant of course "arthritis". I can recall questioning my doctors even in my 30's as to why I would have this problem so early in life, and their response was usually "genetic" in nature... my Dad had arthritis for many years I recall. He always wore a "copper wire" around both ankles and complained with his knees more years than I can count, even when I was very young. But, also never was it questioned "why" in his I am sure late 40's had that bad of joint problems, especially his knees. His job and when he was young hoeing, pulling and chopping cotton, to move onto working at that time what was known as Ennis Tag... at 16 years old... and then it went onto become Ennis Business Forms... and that was on a concrete floor, years on a printing press, and then he was in management the last 20 years or more, before retiring. So, the doctors blamed his on "environmental" problems. But, back then, I don't think RA, was even anything the doctors knew enough about or anything about to make a diagnosis. So, even though Dad had "symptoms" back very early, his were considered a part of his lifestyle... he also fought in the Korean War, and contracted a very seriously bad case of Malaria. He was in the hospital 3 months, from what I know. Even the whites of his eyes turned yellow from the Malaria Fever. He never could give blood after that. I think that it remains "dormant" even though you recover from it. So, I wondered if him being so ill with such a bad disease back then, may have had something to do with his later joint problems and arthritis.

I've came to the conclusion that the majority of us, have our own "thoughts" about the why's of these illnesses. Many of us are more "experts" about some of them than our own "experts"...

Even though this sound harsh.... Yes, our doctors are the "specialists"... they go through many years of schooling, hard work, studying, and all to become doctors... and then more years to really specialize.

Yet, when you have never "experienced" a "chronic illness" ... whether pain, autoimmune illnesses, arthritic illnesses, FM, CFS and many more... you just cannot "know" all of the in's and out's of those diseases. When you LIVE, EAT, BREATHE, WAKE, SLEEP them every day of the course of your life, you tend to become an "expert"... by having the problems, be researching very specifically certain symptoms, by reading, by the latest news and developments, by websites that provide tons of good information and so forth... so of course doctors are the "experts as far as "knowledge" in schooling, BUT, they cannot possibly "get" what we feel, see, hear, smell, and LIVE with daily.... thus I cannot fathom in these times physicians are still "NOT HEARING" us truly... they may "half listen" but some of them like my own Orthopedic doctor, will flat "dismiss" me and say I am "not the expert"  again. one of the doctors that DOES NOT like an "educated or informed patient"... so this is my take on things for the time being... when I return from the doctors later today, I will add more onto this.... but please post your thoughts....

Sonograms!!?? Why have Doctors NOT already done these???

This just totally blew me away! I've fussed and griped for YEARS about how each and every time I've had to have a "joint surgery" and how badly I was in pain; plus do to my joint history, the, the DJD. the DDD, the RA, Lupus and the list goes on and on, when I go in with a joint hurting, it usually means we are destined for surgery, maybe even replacement. I recall when my left elbow gave me so much trouble, and not long after my left shoulder began to drive me insane with pain, loss of range of motion, stiffness, and the entire gamut. I went through all of the tests, the MRI's. the CT's, with and without "contrast", X-rays, medication and nothing usually worked.  I may have some relief from a corticosteroid injection into the joint, and that may last for a day, month and sometimes even a year. On my right shoulder, I had several rounds of injections, way before we did any type of arthroscopic surgery. Yet, even though all of those "expensive" tests, that were supposed to be the "gold standard" when it came to diagnosis, may show some damage, spurs and so on, BUT, when every surgeon that did my various surgeries actually got to "see" the massive amount of damage in the joint, they then understood why I was so adamant about NOT using those tests as much, as more "heavily weighing" from my long term symptoms, them actually getting worse than ever better, and that there much more damage in the joint than any type of scan, MRI, and so forth ever would show them. In fact, my orthopedic surgeon who did both my complete right reverse shoulder replacement and my 4 level cervical neck surgery, told me himself. The damage was so deep, and it was extremely bad, but there was no way it would have shown on any test. Sam thing with my neck, it was the same with my elbow on the left, my shoulder on the left, and both knees. It never failed that the doctors would always tell me that what they actually saw by doing the surgery, was far more worse, than any type of a scan, MRI and so would have ever shown.

I have also said that I felt that any "scan", MRI, X-ray and so forth is only as "good" as the person it with experience and knowledge to read them. I can just tell, from all I've heard about and read, that often things are NOT found, or they are far worse, than what the "radiologist that read them said.

It just stands to reason, if someone has the "education" yes, that is a huge part of it. But, when you are looking at something as complicated as the inside of a joint, or any organ for that matter, if you don't have not only the knowledge but experience to totally "see" all of that entire ordeal, then all too often, I felt things were ""missed" because of whomever read them, didn't have enough experience or possibly training, to not miss something. Again, this is not just joint related but any type of scan, and so forth, things could be missed, and could cause serious issues if they are not caught in the beginning.

Same way with "blood work"... they are coming to find with many diseases, that all too often that "blood work" again that is supposed to be another "gold standard" for diagnosis, MAT NOT BE accurate. It could have been not processed quickly enough, or no refrigerated in time, or blood work has been known to get "mixed up" and maybe what was read had nothing to do with you. Many may not realize it, but on some of the very complicated blood work that they do, it may be actually "shipped" even out of state to be processed. Some of these tests either take extremely high dollar equipment, time, and the person to make sure it is done accurately. Again, there can be a mix up, something not processed in time, left out too long, or any number of things could "go wrong" before the actual test is ran, and the outcome that is "right", could be wrong.

I know I am NOT the ONLY PERSON who has been through this very issue. Even when I had the double hernia's. I had 2 doctors, a sonogram tech, a PA, ALL miss the HERNIA"S!! I knew they were there. I even told them exactly how to locate them, and why they would not locate them if I lie down, they would kind of "settle" down into my abdomen, and then they were difficult to locate. Yet, I have one huge lump on the left, and the one on the right had just began to show. I finally went to a regular SURGEON. He "found" them immediately and said I needed to have them both repaired before they got worse. The one on the left was already getting fairly large and the right one was headed that way.

Yet, even with a sonogram, 2 doctors, and one PA all doing an exam, none of them found them whatsoever. Yet, I was persistent, that I would NOT take "no" for an answer. I had at least ONE hernia, and I planned on getting someone to freaking listen!

Well the week after seeing the surgeon, I went in and had a double hernia repair.


So, went it with my elbow, my knees, both shoulders.... no matter how many scans, tests, reports, experts, and all that are involved WE, KNOW our BODIES better than anyone else. And if YOU FEEL SOMETHING IS NOT RIGHT, then do NOT TAKE NO FOR AN ANSWER! CONTINUE TO go onto other doctors until someone can give you an explanation that at the very least makes sense!!!

This day and age about "people" not being "educated" about medical problems, especially chronic ones, has far past us. The majority of this nation and around the globe, with the internet, and so many "reliable" web sites, doctors, specialists, documentation, everywhere can absolutely have a great deal of information about "possible" things that could be wrong, to others letting them know possibly how they dealt with a certain treatment, or surgery... and YES, there is also some BAD information out there too You must use you "brain and common sense" when it comes to weeding out the "good info" from the 'bad info"....

So, I totally understand doctors that get a bit annoyed with a patient that comes in and begins to tell them they know what is  wrong with them, because they read it online, they heard it on day time TV, or several of their online friends have the same issue.

I get their point. But, when I go in, I don't begin to "rattle off" what I've found online, I usually go in with a "list".... and I ask questions, about certain things I may have read online. Yet, I try not to put my foot down and say "I know what it is because I found out about all of it, here, there or yonder. But ALWAYS TAKE A LIST!!! I can guarantee even though you may have a photographic mind, and like myself I used to be able to do all kinds of things and multitask. Yet, now days, as soon as I walk into the doctors office, I've without a list I would forget have of what I went to ask about. Thus that list helps to keep YOU focused, and also let them know what kinds of things maybe going on with you, that can help them to make a better "guess-ta-ment" or find the answers to whatever is going on with you and your health.

So, now I get to the article below. Which talks ALL about the VERY thing I've been fussing and griping about!!! A very SIMPLE test, that is certainly NOT INVASIVE, and it MUCH CHEAPER than many of these other tests, that give the doctors, a much better look at what might really be going on, especially when it comes to joints, inflammation and on forth.

So, PLEASE take a moment, and read this below!!! Then PLEASE share it with your own friends and those who have been through hell and back, sometimes for YEARS trying to get a right and accurate diagnosis!

I have already got it where I can print it and take it to my own doctors!!! I think they all need a "wake up" call.

http://rawarrior.com/professionals-call-for-ultrasound-use-in-rheumatoid-arthritis/