Thus... this is a continuation of my prior post.... (PART 2!) -
Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)...
Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?...
*********** NOW. there is MORE to the STORY!!!!!!
After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning...
This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore!
And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.
AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.
She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.
Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!
Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course, I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!
My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.
I also believe that after Mom's inquest while she was there, did some shaking and moving. I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!
Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.
Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.
So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.
I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning... and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.
ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!
I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.
I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.
I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!
There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....
Patients’ Access to Treatments Act (H.R. 460)
H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act
"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015