Rheumatologist visit went well, start Enbrel when insurance approves it, still pissed at Congress, dealing with severe pain in many joints & trying to get the word out for everyone to write Congress & let them know about the business of insurance, cutting "entitlements" and more...

I had a very "good" visit with my PA yesterday at my Rheumatologist office. She FINALLY BELIEVED AND SAW JUST HOW SEVERE my RA has gotten since September last year. She immediately saw the severe swelling and inflammation in 16 of my JOINTS! 

 

I also have "synovitis" in between several of my finger joints on my right hand, swelling in my ankle is somewhat from the RA, and the stiffness, weakness in both hands, my ankles, hips, feet all related in some way to the RA and Lupus. She has put me on Enbrel. She felt the Xeljanz would not "touch" the severity of the RA now. She said if the Enbrel worked somewhat in about 8 weeks or so, she may consider putting me also on the Xeljanz also, to help the Enbrel. She said we would "try" to get me off the daily Prednisone, due to my osteoporosis being so bad, and she agreed it probably has something to do with my fractures of my hip. My Orthopedic surgeon said the same and so did my PCP. They felt although the fall was very hard on that hip that I may not have had a fracture if I had not had the severe osteoporosis that I do. 

 

I see my Cardiologist next week, and if she says it is okay for me to be put back on one of the pills for osteoporosis, although mine is already severe, it "may" help to protect me from just having a joint "break first" then me fall. That happens at times with severe osteoporosis. It happened to my Grandmother. She did not fall 1st then her hip break. It broke and then she fell. My parents next door neighbor also had that happen. She was just walking down the hallway in her home, and her hip broke. So, thus the reason for trying to get me off the Prednisone and hopefully on one of the pills, like Fosamax. I cannot have the injections again. 

 

Once you have those for a few years, due to the other issues that can cause, with a particular type of complicated femur break, I would have to just go on the pills instead. I see my orthopedic surgeon next Monday to hopefully begin getting me prepared and okayed by my insurance for my neck surgery. I am in so much pain, honestly all over, I can barely stand to move, yet if I sit for just a bit, then I am so stiff, I can barely get up and try to walk. So, it's damned if I do and damned if I don't. Plus now not only am I fighting those damned red "paper wasps" already, but the yellow jackets, and last night those damned "salamanders" showed their asses on my porch. I happened to have my fly swatter and knocked the hell out of him. Hopefully that is one less, it was a grown one so those are the ones that can breed the little devils that can breed in dozens very quickly. Then the gnats are nuts, the "May flies" are crazy, fire ants... dammit without any "winter weather" all of the "bugs" are just everywhere. We still don't know what this "bite looking rash" is... she thinks maybe some type of dermatitis, but I still think it is shingles... just not as strong of a case of them due to the Valtrex, which she said they do use for the shingles. I hope the insurance approves the Enbrel quickly and gets it out to me... I am in such severe pain, it is horrible....

These are the very issues, like insurance and the Enbrel, and "cutting things like Medicaid and other entitlements to those who need the insurance so badly due to severe and chronic illnesses, many that need expensive medications and continued medical care that means "Specialists". We also NEED the NIH to be able to have funds to continue research on so many illnesses... things are just a damned mess with our government and only us, the PEOPLE can do something about it!

MORE CRAZINESS INVOLVING the CDC and them NOT WANTING DOCTORS TO ASK A PATIENT ABOUT THEIR PAIN LEVELS AS FAR AS A 5TH VITAL SIGN!!!! JUST PURE INSANITY!

Please read and sign the petition below to President Obama and how you feel about this Opioid bull!!!!


http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336?xid=nl_mpt_DHE_2016-04-14&eun=g773630d0r



This is titiled "TO STOP DOCTORS FORM ASKING ABOUT"A FIFTH ISSUE WHEN YOU GO TO YOUR PHYSICIAN, AND THAT IS ASKING ABOUT YOUR PAIN, AND PAIN LEVEL!"

http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/57336

Talk about another load of CRAP!!!! If a patient comes in with anything that a physician KNOWS causes pain, why would they NOT ask the patient what their pain level was, had been and what is "tolerable?" I am SO SICK of the CC, the government, Congress and all of these "opioid fearful people causing havoc for us Chronic Pain patients who like myself when I go to my Rheumatologist Friday, HE SHOULD want To KNOW my PAIN, then, the past few months and what is TOLERABLE? How do we or HE know if my MEDICATIONS ARE WORKING? If he does NOT ask the Questions about pain, the inflammation, and so forth he would NOT know... this is simply ridiculous!

This is purely incidious! How can a doctor NOT ask a patient who comes to see them especially with any illness, whether chronic or acute what their "level of pain is" as a "vital sign"? In the first place, if you leg is broken, or you are having heart problems such as a heart attack that in itself can cause PAIN!

 

Then take Pain Doctors who see chronically ill pain patients, or like above my Rheumatologist who bases a portion of their "diagnosis" updates on how a patient's pain level is, whether worse, better, the same, and so forth... I swear with each day, and each article I want to fly to Georgia and tell the CDC, along with being in Congress, my story, then ask them, HOW LONG THEY WOULD GO WITHOUT ANY PAIN MEDICATIONS IF THEIR SITUATION WAS LIKE MYSELF AND MANY OTHERS? If they have a loved one that is in severe pain from a spinal injury, or chronic severe disease, or has Lupus, RA, and even osteoarthritis, as my Mom can testify lately, causes her SO MUCH PAIN, without a pain pill, SHE LITERALLY CANNOT GET OUT OF BED AT ALL, PERIOD! I felt she may "pass away" on Monday, because I got there and she was in so much pain, AND APPEARED TO BE SO ILL, I FELT SHE WOULD NOT MAKE IT ANOTHER DAY!

I GAVE HER, her pain medication properly, her other medications for her blood pressure and so forth, and made sure she had some beside her with direction on when to take them, and by TUESDAY, she was UP AND OUT OF THE BED! Yesterday, she was up and able to do a "few things" rather than be CONFINED TO A BED! So, I want the CDC TO EXPLAIN WHY I WOULD ALLOW MY MOM TO SUFFER NEEDLESSLY TO THE POINT SHE WAS CONFINED TO HER BED, WHICH WOULD ONLY CAUSE MORE HEALTH PROBLEMS, AND POSSIBLY SEND HER TO THE HOSPITAL, RATHER THAN MAKE SURE SHE TAKES HER PROPER PAIN MEDICATION????? I am SICK TO MY STOMACH, AT THIS CRAP OVER ABUSERS, AND USERS... WHO FOR THE MOST PART BY THE MEDICATIONS VIA THE BLACK MARKET, OR FROM OVERSEAS, AND NOT FROM A REPUTABLE PHYSICIAN! 

THOSE THAT SELL HEROIN, ALSO HAVE THEIR HANDS ON EVERY TYPE OF MEDICATIONS, WHETHER THEY BE OPIOIDS, AND DOWN THE LINE... AND THEY CERTAINLY ARE NOT GETTING THEM FROM A REAL PHYSICIAN... THEY ARE GETTING THEM THROUGH SOURCES AND SELLING THEM ILLEGALLY TO THOSE WHO CHOOSE TO ABUSE!!!!!! 

I want to SCREAM OUT to these fools that THE MAJORITY OF US ARE NOT ABUSERS! We are people that NEED TO BE OUT OF THE BED AND LIVING OUR LIVES LIKE MY MOM! AND, our medications do NOT REMOVE ALL OF THE PAIN... but MAKE IT TOLERABLE ENOUGH TO GO ON for the most part. I STILL LIKE THIS WEEK, HAVE MY DAYS THAT THE WEATHER, WHAT I HAVE TO DO THAT WEEK, from TAKING OUT THE TRASH TO THE CURB, TO SOMETIMES JUST HAVING TO RUN TOO MANY PLACES FOR ERRANDS FOR MY MOM AND I... AND IT WILL PUT ME DOWN FOR A DAY OR TWO, OR THREE... BUT I CAN TELL YOU I would be DEAD, and in ASHES, if I HAD TO LIVE EVERYDAY IN THE SEVERITY OF PAIN with NO medications! There is NO WAY MY BODY could WITHSTAND THAT SERIOUS AMOUNT OF INTRACTABLE PAIN!!! Pain EFFECTS YOUR HEART, AND OTHER REALMS OF THE BODY, and my BODY WOULD GIVE WAY, AND I PROBABLY WOULD HAVE A 3RD HEART ATTACK IF I HAD TO LIVE IN SEVERE CHRONIC PAIN EVERY DAY!!!! SO PEOPLE GET A GRIP AND LEARN THE TRUE FACTS OF THE STORY... WE KEEP HEARING "ONE SIDE" AND NOT THE OTHER......

 

 

 

 

 

 

PLEASE HELP THIS MONEY TO ALSO HELP THOSE IN THE CHRONIC PAIN COMMUNITY - SIGN THE PETITION

 

https://petitions.whitehouse.gov/petition/utilize-part-1-billion-granted-toward-opioid-epidemic-help-chronic-pain-pandemic-america

More about Wound Care Specialists, Severe Pain that is driving me about insane, too much to do, Mom and what I fear is dementia or Alzheimer's & as always more.....

At this moment my Mother does not know just how upset I am with her. But, I totally intend to tell her today! After she had the issues with her stomach, and some intestinal issues, she lost some weight, because she just would NOT eat! I mean she went for DAYS and would barely eat or drink anything! I took Ensure over there, took everything I could think of, suggested everything I could possibly suggest, and finally took her to our PCP who put her on medication to "increase" her appetite, and some new medication they are using for chronic constipation, especially from certain medications. She has a lumbar spine issue, and had been on NSAID's. That has been going on for months, and the pain specialist even gave her Norco to take every 6 hours when needed. Which at first she refused to take, until the NSAID"S caused kidney output issues, that sent her to a Nephrologist, who took her off NSAID's (which our PCP has already done) and cut back her Lasix some temporarily until she had a kidney sonogram, which has been done last week, and more blood work on Monday next week. Then she follows up with him the first week in December. I feel things will return to normal. I feel it was the generic Celebrex that caused the issues, and now her kidney functions should be fine. But, he made the mistake of coming out and telling her she maybe facing Level 4 "kidney output" which means one step away from dialysis... I had told this before, and how I reprimanded him for even mentioning that word to her before he even knew WHAT was causing the problem, and before he even read the chart from our PCP etc... I was so mad at him... but MOM will NOT ask questions, she will not speak, she just sits there, listens, and then leaves not understanding a word... and having 15 questions, she never asked, and expects ME to figure it out, explain it, and then even at that she is so totally confused, she does not even know "if" she takes her meds now, or "if" she is taking the proper meds at the right dose. I cannot say enough that I have explained, I have a typed out list, of what she takes, when, how much, what it is for, and which doc prescribed it, and she still cannot get it right... she blames the pharmacy but she goes in, takes her "bottles" rather than calling them in BEFORE SHE GOES... and expects them to have them ready immediately even if she has NO REFILLS! Then she gets mad when they cannot get them okayed by the doc right then! I have talked till I am blue in the face, and nothing goes into her thick skull. I spend more time going over there to explain medications, that she cannot get straight... and she will do NOTHING for herself anymore. She won't leave the house for days and days and days, because it's cold, well it is winter! And mu body hates cold weather, and I hurt, am stiff, without my pain pump, with two HOLES in my legs, and I have to MAKE myself, but I get up and move, rather than lay in bed and mope! I even had the doctor put her on antidepressants, she is so totally depressed, and she decided her "breathing" was not right. So, she went in to her cardiologist, that told her the leaky valve was in such good shape now, that she can't even "hear" the leak! She also told her the shortness of breath, the weakness, the stiffness and pain is from having stomach issues, losing weight and muscle too quickly, not eating, and then now not exercising, walking, or something to improve her muscle tone, especially in her thighs... that is why she stays cold all the time, why she feels weak, and walks "slumped over forward"... and she just walks now "shuffling her feet" like she is almost what I see in people with very bad Alzheimer's.... So, Wednesday around noon or so, and had just gotten out of the shower, and my phone rings... my hair was not even dry yet, and she is "mad" again... she let the car sit there for well over a week, and did not even start it and let it run, so the battery was down AGAIN! And she was "out of everything to eat in the house"... so I told her I would finish getting ready, bring the battery charger over, put it on trickle charge and let it sit for a day or so, and I would take her to the store. Well, we get in there, and all she bought was paper towels, toliet paper and facial tissues! Barely anything to eat, but 3 pieces of "salami" she has sliced, and a small loaf of bread... and some already made bisquits and sausage to microwave! I was the one that really did not need much, mainly stuff to clean my dentures, BC powders, more large bandaid's... but I bought more groceries than she did... I bought a ham to put in the freezer, and several other food items... and we got to the front to check out, I looked at her and said, are you now eating paper towels? I thought you said you had nothing in the house to eat? Well, I know what she did... she decided NOT to buy what she really needed, because she was upset over the car not starting, and decided she would not buy all of what she needed at the time... which was totally stupid... here she was, did not even have to carry any of it in... I could help her, and griped the entire time about how heavy a 2 liter coke was, and how everything is too heavy to carry in... it took me only 5 years to finally convince her to use the reusable grocery bags... that are so much easier, hold stuff better, with handles, and you don't have 50 tiny plastic bags that hold nothing to try and deal with... anyway, I had already TOLD her at least FIVE TIMES that I had the appointment yesterday, in Duncanville, with the wound care specialist... and even though I had some idea what they would do, as far as debriding the abscesses... I was not totally sure, and had no clue how long I would be there etc... I never "asked" her to go, but she knew it was a new doctor, something I had never been through before, up in the Dallas area... etc... so even when I left her house Wed. afternoon again I reminded her of the appt the next day at 1PM in Duncanville... I could tell she was NOT going to offer to go... hell she did not even want to go to the grocery store, so I knew her not saying anything was her way of saying I don't want to go with you... but I called her about 11:30 yesterday morning. I was leaving at noon... to tell her I was leaving, and it maybe later that evening before I could take the charger off the car, or even today, Friday before I would get over... well, when I called SHE WAS STILL IN BED!!!! Again for over a week, she stays in bed until almost NOON! She never did that before! She was always up fairly early, may lay back down for a bit if it was too early, but she would get up, bake, do things around the house, and so forth.. she may sit for a time, but she was usually up and about for at least part of the day... now all she does it stay in bed and gripe because her back hurts so bad.. but will not take the pain meds as she can to help with the pain, and then will admit if she "gets up and stirs" around the pain is "better".... but yet, she was still in the bed after 11:30 in the morning... and then had the nerve to tell me, SHE DID NOT KNOW ABOUT THE APPT. she "thought" I was going back to the "surgeon" in Waxahachie!!!! She knew that was NOT true! I had told her when my PCP wanted me to go, what I was going to do and see, a wound care specialist, and she had been told numerous times it meant going to Dallas... so then I don't get home until after 4 yesterday afternoon... so I change, say hello to Bub's, and get things back in order and then call her to tell her, I was not going to mess with the battery thing until today... it was late, I was totally exhausted, and she did not need the car yesterday afternoon anyway... and again, she said, I think I have been "out of it"... I did not know you were going to Dallas, to this specialist... and I said YES, you are out of it, and YOU DID KNOW, because I told you a half dozen times, including Wednesday afternoon, again... that I had to go the next day and be there at 1PM.. and it was in Duncanville... and then she said something about sleeping so much, and again I told her that she is suffering from "disuse syndrome" and that staying in the bed and NOT DOING as her doctors have told her only makes her more weak, feel more pain, and worse health wise and mental wise... and then she said, "well I have nothing to do"... BULL, she is always able to find something to do around the house, she could have been up, dressed and went with me, and at least got out of the house, rather than sleep till noon, and then gripe because she is cooped up, cold, and weak, and in pain.... anyway, I just bit my tongue on the phone, but I totally intend on giving her a good talking to today when I go over... this is totally stupid... to all of a sudden lay down and decide to just give up and wallow around in your own self pity... anyway, I guess I should not post this here, but I am sick of her playing me and I spend more time messing with her stuff, and don't think I resent it, I moved back here to "help her".., BUT not everything... not all that she suddenly has decided she can't do... I already do enough almost daily for her, and the rest (she even decided it is too much trouble to go to church)... my Grandmother went to church everyday, without fail with her sister... so going to Mass on Sunday morning, certainly is not something she can't do anymore... that is just an excuse... okay... well enough griping and being disgusted with her attitude... I have my own stuff to do... I still have to try and see about this bracket on the ceiling fan, along with a billion other things I need to do... more later guys and gals....

More on Mom, pain, and wondering if I am LOSING MY MIND!
I saw it again yesterday... I "told her" 3 times about blood work she needs to have done "Monday"... and when I got up to leave, she said, I can go by myself "tomorrow" to have the blood work done... and we had JUST discussed it was "Friday"! I turned to her ad said, well if you think they are open on Saturday, I guess that would be fine.. and then I said "Mom, you can't even keep up with the days of the week, or what time it is, I am not sure you can go to have lab work done yourself... besides I had JUST ALSO TOLD HER that I had the ORDERS for it! Sometimes it is so frustrating also... because I just feel like I repeat and repeat and remind, and she still just does NOT get it. I walked in yesterday, and she was "looking" for something. I asked her what she was looking for, and she said you know the "stuff" for... and began to make a "circle" with her fingers... I said the "Meclazine" for vertigo... and she said yes, and I thought I had a whole new bottle.. I looked up and it was sitting on the kitchen cabinet... and I pointed and said hey, there it is right there... and she said I don't recall putting it there.... I did not know whether to feel badly, or be just plain mad... honestly... it gets very old... very quickly, and with my own health issues at this moment, and honestly my PAIN LEVEL EXCEEDS "10" at this time, and it about 80!!! if that was on the chart... everything on me hurts today... everything. and my pain meds did not come in yesterday, which concerns me, because the nurse at my docs office called Thursday afternoon and said she got them to the pharmacy... and they usually get those mailed out that same day, unless she did it very LATE in the day, as she does sometimes I think just to be an "arse" to put it bluntly.... so hopefully they will be here today, I will be out of the strongest ones by Monday morning, really Sunday night.. she always does that too, knowing that they come to me from a pharmacy in Dallas, she will cut it to the very last moment, and you pray you don't run out before your new script arrives... it is sometimes just frustrating... LOL... I guess I am a bit upset over everything today.... I have SO MUCH to do, and I hurt so badly, everything I try to do is just so difficult to contend with... my pain level has not been this bad in a long time, but it is surely making up for it right now...