Showing posts with label corticosteroids. Show all posts
Showing posts with label corticosteroids. Show all posts

Saturday, January 6, 2018

After "many" strange" symptoms, DO I ADD yet "another diagnosis" to me endless list of crap wrong with me??? "CPRS"????

I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange that add into the mix of it all... I was telling my friends on Facebook about the ordeal and one lady mentioned that I should be seen by a Neurologist who specializes in "CPRS"???? Complex Regional Pain Syndrome! I look it up and guess what, MANY of my weird symptoms "fit the bill" - I am just about ready to scream and run, I am so fed up with health problems and the "list" is endless.....


 I had not even thought about that. could it be caused by a very severe sprain? Actually I've had three sprains in that right ankle. The 1st one when I was 40... I had just gotten home after my 1st heart attack, and went toget out of the bed. That foot was "so asleep" I didn't realize it, so when I stepped up I twisted the hell out of it, and it was bad. In fact I had to make a trip to the ER thinking it may have been fractured. Then about 5 years later I stepped crooked on it, when the wind blew me out of a car door at a store here. I was dressed for work, and had went into a store at lunch. The wind was terrible, and when I opened the car door, the wind caught the door and made me twist it again. 

Then in 2016, the day before Mom's funeral in June, I stepped off my front porch, talking on the phone to my daughter, and my neighbor had called to me, and the grass was so wet with dew, both feet came out from under me, and I sprained both, but the right one was bad again. It was so swollen it looked like I had a softball on it. I had to wait, and that Monday after her funeral, went to have it X-rayed at Urgent Care. It was not fractured, but I pulled it again so badly, for 6 months it continued to swell. It was really after I fell fractured the right hip, and then early last year, I went to a foot specialist. He put an injection of corticosteroid in it, and I went for PT about 3 weeks. It went down and "seemed" fine, after that injection. Then last week, I went to the market, and when I got home I noticed my sock I had a bad indention in that foot and ankle.

 I didn't think much of it until then I noticed this week every time I am up on it, or sit at the computer, with it down, it swells terribly again. And I've noticed it hurting now, yesterday it was huge again when I went to Urgent Care about the Lupus and RA flares. I hoped the injection of corticosteroid for those would help reduce the inflammation, thinking that the Lupus, RA and just the very bitter cold weather, that was swelling my fingers and other joints may have caused it again to swell after it being so injured. 

But it never dawned on me, other than I was fearful my "heart" may be causing it to swell. When I had my 1st heart attack, for about 8 weeks before I had it, every day my ankles both of them would swell horribly. That was when I was in "great shape" watched my weight, exercised daily, and never thought I would have a heart attack, yet I did on Jan 8th 2001! So anytime unless I've sprained them etc it worries me that my heart could be acting up, but I've just had an echocardiogram, and a check up with my heart doctor about 3 months ago or less... 

so between knowing it is so damaged from the sprains, and the RA and Lupus, it will swell and hurt, especially with such very cold weather... my fingers, and every joint feels "swollen" and stiff and hurt like hell. So, last night I took one of the Metoprolol's that is for the "extra beat" of my heart. I had slacked down taking them daily because my doctor felt that they were causing me to have a very slow heart rate. In fact we talked about putting a pacemaker in, so I could take the medication and not have to worry over the heart rate problems. Then I will be damned I had one of the damned very cold, wet night sweats!!! Those are the reason I had cut down on the Metoprolol anyway. 

IF my heart rate gets too low at night, we feel my body compensates, by one of those horrid, cold, drenching night sweats, I was wrapped up all night in a heavy robe, and blanket, because then I get so cold after that sweat, I shiver all night, and I feel so bad, I can't even get up to change my clothes, I am just so cold, it just almost hurts to get up and have to change... I swear I thought 2018 would be "better" and it sure has not started off very well for me... I think I am just freaking cursed....


Strange enough, when I look it up, much of those symptoms are true... for one my "OTHER LEG" from the knee down has hurt now for about 10 days, it wakes me up at night, but it is in the other leg from the knee down into that ankle! Also, it looks so purple, but I thought it was spider veins, I suddenly have them in both ankles, and I've asked before because up until I sprained them, I didn't have those terrible ugly looking things, but that ankle and foot looks purple especially when it swells or I have problems with it... 

it has been injured badly twice... and it will even give way with me at times if I am not very careful with it... the "sudden" swelling was strange to me... unless it has just been swelling due to the Lupus and RA... 

so I guess even my Rheumatologist may not really be able to tell me, nor really the foot and ankle specialist... that does seems and I've heard of it of course due to Barby Ingle and many others that have the problem, I just didn't put two and two together thinking that could be what is going on with the ankle in itself... but now that you have said something, and I read the "symptoms" I am wondering if it may be something else like that  and I will definitely check on it. I see my PCP who was the one who diagnosed my Lupus and RA. He really knows a great deal about "other problems" such as something like this... he is a younger doctor and he is very well educated in other illnesses, syndromes, and things that some PCP may not know much about. Plus if I talk to him, he will know of a Neurologist who could look at me and see.

What is even stranger about this, is that suddenly also i about the past two weeks, I've had severe problems with my left arm, from the elbow down to my wrist and fingers. It wakes me up every night, swollen, and throbbing and like it's "asleep" with that pins and needles type of pain. It did it again last night, along with everything else, needless to say I was up since about 2AM, between everything hurting, the night sweat mess, and such I got up and turned on the television again, and said to heck with it... 

and of course I also have the "autoimmune issues" which I knew often go along with "CPRS" again I guess out of everything, I never put this together with the other problems and symptoms. Of course my first thought it dammit, I DON"T NEED ANYMORE FREAKING HEALTH ISSUES!!!! So, if this is the case then I just "chalk up" one more to the never ending damned list of crap wrong with me... again I feel totally "cursed"!!!!!!!


And here is one link talking about CPRS....  https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet


Tuesday, August 18, 2015

Corticosteroids and Severe Asthma.. Clinical Trial by Cure click



Friday, July 3, 2015

Necrotizing Myopathy: Are Statins to Blame? Article from Med Page Today! Something you may need to know more about... "Muscle Pain"? Not sure why? On a "statin"?? This maybe the answer...

 


This is very similar to what I went through a couple of years ago. I was on a statin, NOT for cholesterol issues. But, a statin, a small dose of blood pressure medication, and Lasix has became a "norm" for many who suffer a heart attack. IT seem the combination help to lessen chances of another MI. But, when I went in with severe muscle pain, especially in my calves... plus fatigue, weakness, and so forth, my PCP checked to see what my levels were to make sure I was not suffering not just from Myopathy, but worse, it can turn into Rhabdomyolysis. plus due to the fact that I also suddenly had double vision which grew worse as the days went by, my blood tests confirmed I had "muscle damage" in my blood. Much like the "enzymes" they look for immediately when the suspect an MI, also basically the same he found those enzymes and I should have not had any. Of course my situation was even more complex. I already had 2 "heart attacks" not just one. So, it was even more important to try and do any and everything to NOT risk another. Yet, the myopathy can be dangerous.... and it can cause permanent damage if left unchecked... so I had to go off the station for 3 months, or until my blood work showed NO muscle damage. So, just like "Prednisone" as my PCP calls it for me a "necessary evil"... without it, I honestly think I maybe unable do do much of anything. It helps to keep the severe inflammation down, but also again in turn, now I have severe osteoporosis due to the Prednisone and I am also "pre-destined" to have it due to genetic reasons and even the AI illnesses. Seeing this article once again brings to mind HOW MANY COMPLICATIONS, other illnesses in "tandem"... the meds and their side effects... all come with Autoimmune Illnesses, and arthritic illnesses, and many other chronic diseases, such as FM,CFS/ME and MANY others.... as PATIENTS so MATTER "what" a doctor might "tell me" I AM STILL going to be an EDUCATED patient~~~ I thoroughly believe some of my treatments, and even maybe some of my diagnosis, would NOT be right.... had I NOT became an EMPOWERED and EDUCATED Patient! I also know there is LOTS and LOTS of "bogus" material out there in the WWW... so you truly have to be diligent when it comes to what you think is accurate... but I NEVER hesitate... IF I Read, or see something online I feel "maybe" something my doctor had missed or not thought about and so forth... I PRINT IT, TAKE IT and Ask him to either allow me to ask questions, or let him read it.... or us just discuss the "main" issue whatever I bring in maybe relative to my situation.... of course I AM NO DOCTOR and by NO MEANS think I "know it all" ... YET, when it comes to OUR BODIES most of us especially women KNOW things very well..... Sometime I feel as if I am "educating" my doctors, and sometimes they tell me, that I am helping to bring new light to the subject.



Tuesday, October 21, 2014

When You are Fighting Chronic Illnesses, Chronic Pain, Doctors, Pharmacies, and Medicare Advantage Plans - you need lots of ammunition and tenacity...

I have wanted to be able to get to this subject for all of you over the past couple of days. Of course about the time I have a "clear slot of time" open, my email decided to blow a gasket on me. I had also not known about a follow up appointment Mom had to have her semi-annual "cardio-sonogram" yesterday. So, I had to pick her up and take her to have that done yesterday. It's not that it takes that long, but by the time you dress, pick her up, have the testing ran, then get back, visit for awhile, and I also had a couple of errands to run, I felt like my day was gone and I did not get anything I wanted to get done accomplished.
Plus, I had "overdone" it and used to too many of my "spoons" last Friday, so all of the plans I made to do things around the house both Saturday and Sunday, got basically chopped in half. Saturday I was in so much misery, between stiff, sore, pain, a splitting headache, almost as if I had another Lupus or RA flare hitting, that I spent Saturday on the sofa for the most part, and that really frigged up what my plans had been. I have SO MANY things I want to get accomplished around the house, from repainting my kitchen, painting and redoing our spare bedroom that is our "music room", getting the floors put down in the kitchen and bathroom, and laundry room, we still never got all of the outside of the house painted... and things just really took a nose dive when Jim had the car accident, was in the hospitals for so long, in rehab for so many weeks, thus lots got put off until we could get back into some kind of whatever normal was as far as a routine. Well, we have still to find that "normality" or routine. I feel like I fly by the seat of my pants most days... either waxing and waning one way, or flopping around like a fish out of water in another. Nothing ever seems to come easy, no matter how simple, you can guarantee there will be some kind of snag in the line.

But, when I got this ridiculous letter from Humana, My Medicare Advantage Plan. I have had them ever since I first got my Medicare parts A and B, which was about 2006 or so. They have now decided I guess to probably NOT Pay my PCP enough OR my PCP has gotten "greedy", thus he will no longer be a "preferred provider" come Jan 1, 2015!!!! Which totally sucks green pecans, if you know what I mean. This primary care physician of mine is the ONLY ONE who out of all of the tests, doctors, surgeries, and so forth I had had, the LUPUS, RA< SJOGREN"S, and the list continues. Well, Dr. "B" as I will refer to him as, had just gotten to my home town and I was one of his very 1st patients. At the time he was brand new, he was "brilliant" when it came to "discovering" the unusual, he looked at everything with a "fresh" eyes, and he was "up" on the latest when it came to autoimmune illnesses. But, even though I was one of his very first patients, including I got MANY others to move over to him, because I so so pleased. He got me on the right medications, and I did go and find try to find a Rheumatologist, in which I did. But, the Rheumatologist were more on the end for the Rheumatoid Arthritis end of the ball park, Dr. "B" took care of the Lupus. When I have flares, he is the one that gives me the Solu-Medrol injections, the larger 14 days step down doses of prednisone. He also prescribes my MTX, Plaquenil, and small daily dose of prednisone. So, without him I would be back and forth to some doctor in Dallas, that would be the waste of an entire day, more money, more time, for something that can be handled here, usually by a phone call, me coming in, getting an injection, a script and I am on my way.

I am not quite sure who is the issue, probably both... it is a well known fact Medicare and especially the Medicare Advantage Plans don't pay worth a darned when it comes to the physicians, But, if you have someone within 5 minutes of home that can do the exact same thing, you save time, the doctors save time, gas, and things run much more efficiently that a trip to somewhere else for a Lupus Flare.

So, this letter that I receive from Humana explains to me that if I have "certain" health conditions that Dr. B takes care of, then they will make an exception and pay him as they always have. So, out of about 15 health conditions names on this paper, Lupus was one of them. So, I fill in the paperwork, send it off to Humana, and about a week later, very late one evening someone from Humana leaving a message about that paperwork. She said she would call back the next day, and so I expected to get a phone call from them the next day. But instead about 3 days later I get this ridiculous letter, stating that "Lupus" and Hip Pain (I have NO CLUE where "hip pain" came in what so ever") did NOT qualify and they would NOT continue after Jan 1 to pay him as a "in network provider". OMG, I was so livid, had it not been late in the evening by the time I got the letter Humana would have gotten a piece of my mind...So, of course you can send in a written grievance in which I did. I also boldly told them they were not going to get by with blowing me off like that. My "condition" of Lupus was serious, it was something that Dr. B is the very doctor who diagnosed it, he is the one that since 2009 or 2010 had taken care of me, which every time he fills my medications, he does the follow up blood work, he takes care of the "side illnesses" that go along with the Lupus, and not one other PCP is going to want to take on my complicated case due to it is a complexity that has to be kept up with. As Dr, B always knows exactly what is going on. If I have a "new" symptom, he knows if it is related or not to the Lupus, and he also takes cares of my mouth ulcers, thrush, stomach problems from Lupus. As I had said and we know for a fact, I can go from "well" to ill enough for ICU within minutes under some circumstances... just like I had double pneumonia back in April. No one was here but myself, so I did not realize I was running such a high fever I was all but see things and hallucinating. Thank goodness I thought to check my temp and even though I never run fever, I did not usually do so, and if it had gotten any higher I may have went into convulsions. Luckily, I was still smart enough and scared enough not to drive alone, so I called my Mom and had her pick me up that Sunday afternoon and carry me to our Urgent care Center. But, if that had been any other time during the week, I would have called Dr. "B" quickly, and found out I was running 103.9 fever, and had double pneumonia!!!! It was so bad the doctor on call at the center wanted at first to send me to the ER and possibly have me admitted. Well, at the time Jim was in Baylor after the car accident, which he was still in Acute Care and had just gotten out of ICU with all kinds of broken bones, a very long 9 hour back surgery, 17 broken ribs and it continued on. The very last thing I needed was to be put in a hospital down here, and have him in the hospital up in Dallas....

So, having a physician that KNOWS my health issues, ALL of them, how the interrelate to one another, and what has taken place, from surgeries, to the 6 weeks I spent in two hospitals, and almost died from what they can surmise had something to do with the Lupus. But, even in the huge hospital in Dallas, and all of the highly specialized doctors there, many of them were NOT familiar with Lupus, nor any of the health problems that come along with it.

So, I got to thinking about this entire scene, and it just makes me even madder than I was when I first got the letter from Humana! In the first place, IF HUMANA was PAYING the doctors better, then the doctors WOULD NOT be dropping out of being "Preferred Providers"... and if the DOCTORS were NOT SO MONEY HUNGRY they would be "settling" FOR WHAT THE INSURANCE pays them, and not setting their GOALS OF MONETARY GAIN so high they cannot either afford to pay the doctors better OR WORSE they take FOREVER TO PAY THE DOCTORS!!! This is NO JOKE and it came directly from the mouth of one of my physicians!!!!

He had TWO SURGERIES, and I know he meant very EXPENSIVE SURGERIES, because it was probably something like having a pain pump internally put it or something like a stimulator put in internally, which the doctor has to implant. Both of them are very expensive. Just the devices themselves run upwards of 50,000.00 or so.

Anyway, he had two patients that AFTER TWO YEARS OF dragging their feet, the Doctor had to take Humana Medicare Advantage plan to COURT IN FRONT OF THE JUDGE, and the JUDGE MADE THEM PAY MY DOCTOR!!!

But, it took him 2 YEARS to get paid on those two surgeries!!! If he has to wait to get paid on many of those expensive procedures, they will all go broke trying to keep up an office, pay employees, pay taxes, and keep an office up and running. It was insane to hear how long he had to wait and then for a judge to have to demand they pay him what they owed him. I just about let my jaw hit the floor. Now, I also know doctors charge WAY TOO MUCH, to try and compensate for what they are trying to make up on those cases they do not get paid, or certainly not enough. So, it is a circle in circle around and around the merry-go trying to get one hand to a one to pay the other. In the mean time guess who suffers through this??? Yes, you have it.... US, the PATIENTS!!! We suffer added money out of our pockets, paying for doctors and the clinics and tests, and in the end, half the time no one has a straight answer for us anyway. So, now this puts myself, my Mom, and Lord knows how many other patients just like us are suffering through the exact same issues. It is damned if you DO, and you be damned if you don't.

I have even threatened NOT TO go to a PCP anymore, but just use our "urgent Care center" here. They have their heads on straighter than most of the primary care physician. The 3 or 4 times I've been out there, one of which was for a Lupus flare during a weekend, and then I could go there and get checked in, checked out, have my injections, get my prescription and be on my way. To top it off they are the ones as I said above that diagnosed me with double pneumonia, took the X-rays right there, right away, were on the ball and I was out the door and headed home without any hassle. And out of pocket for me was my $40.00, plus I did not get exposed to an entire room full of germs and people running fevers, and possibly get something else, other than what I already had. It was a "pleasant"(if you can call having double pneumonia pleasant" experience, just due to the fact there was no hassle, and I was home and on my sofa within an hour and a half. It took longer for the pharmacy to get my script ready than it did to get through the Urgent care in itself.

Now you can get your flu shots, pneumonia shots, even tetanus and so forth at the pharmacy, they will even sometimes check your cholesterol, blood pressure and so on, including hearing test for free at different times. It is getting to where people don't want to step into the room of a doctors office, because it takes too long, they never answer your questions, once you spend hours getting in, they then herd you in and out like a bunch of cattle, not really bothering to answer a question one you may have. I've gotten to where even my "tricK" of taking my LIST of all the thing I NEED to talk about them with, and he is running out the door before I can ask the 3rd question. As someone who believes in researching everything myself, and also believes that MY TIME, YOUR TIME, OUR TIME IS JUST AS IMPORTANT AS THAT DOCTORS TIME!!! So WHY do WE wait for HOURS FOR THEM!!!


Then they have the audacity to post a sign if a patient does NOT call in 24 hours ahead of time to cancel, they can charge you anyway. But, I've had doctors CALL ME ON MY WAY TO DALLAS FOR AN APPOINTMENT and they tell not to come, because the doctor is out in an emergency or had gotten called away suddenly!!! So, now my day had been half ruined getting ready, getting dressed, wasting, time, gas, and everything else, yet it seems to be perfectly "okay" for them to cancel at the last moment. Believe me I felt like sending them a bill for my time and see what they thought about that.

I had read an article a couple of years back where I woman did just that. She had a doctor cancel on her two times in a row or something, so she did send them a bill for her time and trouble!!!  Whether she ever got able paid or not, but I bet it did put it on their minds. OUR TIME is just as valuable as anyone else's is... whether the doctor, nurse, surgeon or the Pope!!!!

Again though it takes time and tenacity to do that I can see where under the right circumstances it would get the attention of those who think they are "better" than use.


I would be interested in knowing how many of you with Medicare Advantage Plan and possibly have gotten the exact same thing. A letter telling us that our doctors won't keep them on and be "preferred provider" after January1st 2015. If you HAVE either post here, or send me an email because I would love to hear from you. Then also what are you going to do under the circumstances? Change, try to keep your doctor, just pay the "extra" amount and stay, or does it even matter....









Friday, July 11, 2014

Spinal Cord injury, Lupus, Sjogren's, RA - ?? Happy 4th (Belated) Hope All is Safe - And What in the World is Happening to our World?

I started off with the title of this such as it is, because This post will be a conglomeration of ideas, of things going on... of how tough like can be... how things can change within the blink of an eye... and no matter where you turn er either have some "natural" disaster, man made disaster, or for the most part , if it is not one thing happening, it is another.
As far as Jim and how he is with the spinal cord injury... which I am just now honestly beginning to truly understand how long something like this can take to even show symptoms.... it can be months and months before the "cord" itself comes out of " spinal cord shock", plus healing all of the bruising, swelling and surgery.
Then I find out about this ( definition ) "Spasticity"(Spasticity is a feature of altered skeletal muscle performance in muscle tone involving hypertonia; it is also referred to as an unusual "tightness", stiffness, or "pull" of muscles. The word spasm comes from the Greek word σπασμός (spasmos), meaning "drawing, pulling." Clinically, spasticity is defined as velocity-dependent resistance to stretch, where a lack of inhibition results in excessive contraction of the muscles, ultimately leading to hyperflexia, an exaggerated deep tendon reflex on stimulation with a reflex hammer (or spontaneous firing of deep tendon reflexes as in clonus.) and how even though he was in the hospital 3 months, went through ICU, Acute Care, and to Rehab; then another Rehab... and out of the "hospitals" and into "outpatient therapy". Let me say that Baylor of Dallas is one "HUGE monstrosity" of a Hospital. And that is not including all of their other specialty's from the Cancer Hospital to the Dental College. We we blessed (if you want to call this horrid wreck blessed) that it happened so close to Baylor Hospital they immediately took him there. ALL of our hospitals have their own specialty's but Baylor is just a "golden" egg for Rehab and accidents with lots of brain injury, or spinal cord and nerves.. they have some of the best there.
I knew I would write about the entire happenings (since there were more than on thing that happened at the same time) that could have made the entire nightmare much worse than it is. Some people may look at Jim, on his cane, with his legs quite "wobbly" at time, his neck sometimes bent over, or his shoulders tend to want to roll forward, and they "wonder" if he had a stroke etc. I usually come right out and tell what (Tiffany) calls the "Elevator" story.. He was headed o I-45 to the DFW Airport. As he came upon the outskirts of Dallas and on I-45 where his has several 'In's and Out's... changing lanes and so forth... for NO APPARENT reason we have yet to see or know, he was HIT from BEHIND (now he was driving 60 MPR which is the speed limit through there) an 18 Wheel Tractor Trailer Rig , full speed rammed him from the back, enough we "think" that then it shoved our car under a "Tahoe" which was in the next lane to Jim's right. Then it seems our car slowed after all of that, but continued to "spin" over into another land and it appears he was slammed again by the tracker trailer --- he was "hit" at least Twice, and at a very fast speed to have done the absolutely horrible damage to what now does not even appear to be a car. Jim, does NOT REMEMBER ANY of this. All he remembers he was head North on "I-45 to go to DFW Airport for a plane to Washington DC, WHERE I WAS at the time this all took place. The ONLY thing he said was 2 "people" tried to get him out of the car & could not, so the firemen came to "cut him" out of the car. Well I think he of course already had "MASSIVE physical damage to his body" as well as a concussion, and the "men" were probably the firemen and the ambulance drivers there. From what I & he knows he was unconscious almost the entire time. I know he did "HEAR" something that terrified him though. We were in the Taco Bell parking lot a couple of weeks ago, and I accidentally cut the corner a little to quickly so it kind of made a scraping sound as a "wreck" might and he almost fainted it scared him so badly. So, I am GLAD honestly he does not "remember" the wreck. I think he would have many more issues mentally and emotionally had he been awake.
I was called from Baylor by a trauma unit doctor, while I was in Washington DC..and what made that so bad, is that his Mom had just walked up & thought I was crying "happy" tears that I was getting to meet her, see DC...and all of that. So, a gentleman who helped me through this entire ordeal took over the phone & got the injury reports, if Jim was able to talk, was he able to recognize, and his injuries were etc. I had to tell Jim's Mom whom I had NEVER met, but talked to over the phone for about 10 years that her son was in ICU due to a very bad auto accident. At that moment I just crumpled to the floor in the lobby the of Hilton DC. I could not think, talk, answer, I had just had news that was so totally unbelievable & that I had no clue how to get home (I was supposed to fly home with Jim on Sunday after we had visited The Capitol, DC, His Mom and had a mini vacation. There was a guy who was just monstrosity with everything that had to do with RA,Osteoarthritis, Juvenile Arthritis, and so forth. He spends ALL of his time when he is not working at Summits, meetings, and putting his efforts into helping especially the kids that like his daughter, was diagnosed with JRA at the age of 9 MONTHS OLD! His name is Chris, and was right there trying to do everything to help me that he could. He went to the head sponsor over the Summits, and Laura who is with the Arthritis Foundation and she had a ticket for me to fly out within an hour or two back to Dallas, so I could go be with Jim. At the time we did not know if he was even stable enough to make it. So, even though I was so about leaving his Mom there alone to deal with it all, I knew I had to get back home and to Baylor quickly. My son, Jason who at the time was in Houst working, got the word and he headed up I-45 to come to the airport and pick me up. He ran into some bad weather, yet he got there about 45 minutes after my plane landed. Chris stayed with me the entire time, checking on me, carried my luggage, getting me through check points with bothering me about my pain pump and so forth, thus we made it on just in time. He was a couple of rows behind me, and I was just blessed beyond words to have had him in our summit "group" and then to help with everything he could do in order that I got home. It was amazing.
As I have written to Laura on several occasions, I will never forget the kindness  the "Arthritis Foundation gave to me in my time of need, and I hope to be able to pay them back and even more in my own advocacy work, monetary when we ever get some of that, & to help in any way I can to make sure I spread the word about how important their foundation is. I have read that already on two occasions OUR SUMMIT in MARCH 26, 2014 already helped to PASS TWO of the three legislative issues that the Arthritis Foundation were there advocating for!!! That is just incredible!
So, here "WE" (I) am in the smack dab middle of my own nightmare with Sjögren's Syndrome and trying to figure out the "mini implants" (not sure why they call them "mini"..... this is certainly no "Mini experience". By the time I am through I MIGHT be able to eat Christmas Dinner 2014, if I am fortunate!



Sunday, February 23, 2014

Where Do You "Turn" When you are already "Char-Broiled" by Illnesses, the Insurance companies & Our Medical "Entity"?

How To Turn Over And Change A World of "Not "for" the People, but for The People's Money?



There was a time that I felt "age" and technology moving so very rapidly caused many to not "get the drift" of insurance, medical charges, medical information, & all that goes with that. Well, I am here to tell you right now "age" has nothing to do with any of those things being "confusing". I've found out quite recently, even the medical facilities, doctors offices and insurance companies themselves have no clue as to what they are doing! I've had to get a "crash education" in "diagnosis codes", in the "technical parts" of insurance, medical billing and coding just to get my bills coded, and paid correctly. Two of which I had dealt with since LAST AUGUST~ After 3 APPEALS including myself, my husband, and 5 other people at the University Hospital, working on these, WE NEVER did get Humana to pay those 2 infusions correctly! They continued to try to bill the "Rituxan" as "Part D", which is NOT CORRECT, and then they billed again, and Humana tried to code it strictly as if it were for Cancer, not RA, so that screwed everything up. Alas finally last week, after resorting to ALL avenues even the hospital threw in the towel. They helped me with financial aid for those two bills totaling over $3,000.00!!! They also have me "approved" NOW for the Rituxan infusions until August of this year. After Humana pays all they are going to the hospital will pick up the balance for me. :) Which is awesome news! BUT, in the mean time I was 7 weeks or more late with any biologic! I came down totally ill with two different flares, RA and LUPUS! Along with all of this serious dental stuff that is going to require a Dental Surgeon to probably have to pull all of my teeth, put in a couple of implants, and then put the teeth onto those implants! I go tomorrow to the dentist, but I know just from what I feel and see, I doubt there is anymore "patching". My teeth literally one day seem fine, the next they are breaking off at the gum line, splitting into halves,   and they are almost like coming apart, pieces sloughing off, and it just happens. No rhyme, nor reason. It is the Sjögren's, but all of that was discovered too late. My teeth were already headed down that road probably before 2008, when I first was diagnosed with these Autoimmune illnesses. Plus there is "little" they can do for Sjögren's. There are two pills, I've tried them both. I am still on one of them, but it is not helping really. I constantly have to sip on green tea or something, and I have to constantly chew gum (sugar free and with xylitol" in it) or my mouth is so dry, I cannot swallow, talk, nothing... plus I am constantly having ulcers, sores, sore throats, you name it... . I've already lost 4 teeth in just about 6 months, and I know right now, if these cannot be fixed tomorrow, I could lose at least 4 again, if not more. Now to find an Oral Surgeon, that can "file" this as a medical condition, which it is and it is well documented with ALL of my doctors and now two dentists, that Sjögren's is the issue, and I did have a woman at Humana TELL ME yes they will cover this IF it is a medical condition... and I even got so far as to having them send me a letter stating they will... I may still face having all of my teeth pulled, two implants put in top and bottom, then they almost "snap" the plates in on those to hold them. Regular "dentures" are not the answer for anyone with Sjögren's. Due to no saliva they will not hold in place, and would make my mouth probably less wet, etc. I also have osteoporosis, and it is in the "severe" range. So, that will also be a factor as to how they fix the problem. I could have to have "bone grafts" or some way to fix the bone, if I have lost enough that the implants may not be able to be put in! This is a living nightmare! And the sad damned thing is NOT ONE doctor, or really dentist until I began to discuss it, has tried or talked to me about this horrid disease. Yes, I have it. Yes, it is reeking havoc with my mouth, teeth, bone and gums, but till this moment has anyone offered a "real solution". The ONLY person who has even attempted to find out what HAS to be done, is ME! Plus, this is like major surgery. I am sure the oral surgeon has to put me to sleep, pull those teeth, and then I am not sure about the implants from there, and putting the teeth in. That all depends on my bones in my jaws, as to how it all plays out.... and now I face a major trip 4 weeks away to DC! I certainly cannot go with my teeth literally falling out of my mouth daily now a piece at a time! But, trying to get ALL of this done... no way, no how in 4 weeks! Plus, if things are not bad enough, I have this flare, I was put on steroids again, after an injection, the PA thought I have a sinus infection, which has been wheezing. So, she put me on "Omnicef" but a generic form of it. Well, I have not had any of the "Keflex" type of medications for many years. So, I am on it since Thursday. Friday I noticed my stomach not "right"... but it has not been anyway with the flare mess. So, I take the antibiotics, and by yesterday I have such a horrible, horrible scary case of the big "D" word, I cannot stay out of the bathroom! So, I get concerned, look it up and come to find out, this is probably a "form" of colitis, a secondary infection in my colon, due to it allowing other bacteria to take away too much of my "good bacteria" out of my intestines! I was not that concerned, but it kept getting worse and worse... and it is just I won't even go there... but BAD!!! So, I had already taken some Imodium a couple of times, then read this morning it is better to "talk to the doctor" BEFORE taking any of the anti-diareall's !!! Well what another mess we have here "Sherlock"! I certainly can't even leave the house like this, and now I have another problem on top of everything else. My Enbrel came in Thursday and I took it. But now I woke up yesterday feeling like someone literally knocked me on the ground, and took a baseball bat and beat every muscle in my body. There is NOT ONE place I can touch myself, that does not "hurt"... it is insanity! And who knows, is it one of the flares, medications, something new I am developing???? No biologic for too long, then a new one that I've never had??? I can guarantee "my guess" is probably better than the doctors as this point! That does not include everything that is on the "books" for me this coming month! I honestly fear I will be having to miss the DC fly in. I just don't think with my mouth situation, the flares as bad as they are, and everything else going on with me, I can take a chance to fly to a strange city, going through a 3 day seminar, then stay on through the following Sunday to see Jim's Step Mom. Hell, I can't even go to the store as I am this morning, much less drive to even Dallas! These diseases can really make your life a living hell. When you add on top ALL of the STRESS, with insurance, bills, just having surgery 5 weeks ago, and a few other things going on with "family", that I just found out yesterday, and that I am extremely upset about, my brain is at either go insane completely, throw in the towel, and cover me up for good. And NONE of this includes Jim's ENTIRE ORDEAL with a neck that probably needs surgery, a lower back problem that is not much better, and NO INSURANCE! And don't get me started on the "Indigent" Health help in our county!!! Talk about a joke! That is another complete chapter for my book, if not two chapters. SO!!! IN A NUT SHELL NANCY! You are correct, and it is even WORSE than many know. I just read yesterday afternoon, that "Obama Care" due to the "new insurance crap" may even make getting anything paid through Medicare, and especially Medicare Advantage Plans (i.e. Humana, and the others) even more difficult. They are planning to pay the providers "less"! Well hell, they don't "pay" them as it is. That is why our doctors are starting to not accept them! Because they bill for a 100.00 office visit, and the insurance pays them $3.00!!! or something ridiculous! I realize the medical system is screwed, doctors, facilities all of that is WAY< WAY over priced. BUT it is because the insurance companies PAY NOTHING, thus the circle begins, round and round. And who is stuck in the middle of it? Well us for one as patients! BUT who is it FUELING THE FIRE??? THE GOVERNMENT, MEDICARE! Absolutefrickinly! Yes new word... we have our dear CONGRESS and our Centers for Human Services (not Humane", but Human) to thank for this bill pile of bureaucratic bull red tape. And then it all falls on our shoulders, and we bear the scars all over us where they have just "shredded" humans out of any kind of true health care! It is a total fly over the planet, into another universe, complicated, ridiculous, "corporation greed" let's make money, NOT HOW WE CAN HELP PEOPLE! Thank you to ALL of our Congress, and I mean all of them... local, state, federal.... we vote them in and they vote us as "null and void"....

Saturday, January 25, 2014

Osteoporosis - It Seems to be a misunderstood Disease (Not Just An Elderly Person's Disease)

A typical scene. You are pushing your cart through the market. You round the corner, and there stands  a sweet little elderly lady, humped over, frail, and appears to be so fragile she might break. Your first thought, wow, osteoporosis.

You go a few more isles over, and round the corner, to see a woman, maybe in her late 40's, possibly very early 50's at the most, standing straight, possibly "small-boned", never giving a thought to wow that woman must have "osteoporosis".

Well,  if you guess yes to both, then you are a winner. If you guessed the first one, you were only 50 percent right.

You make walk 4 more isles, pass another elderly lady, a tad bit frail, but holding her own at around 80, and you may wonder, wow, she could also have "brittle bone disease", but no, not at all, her bones  may be quite well for her age.

Osteoporosis, used to be a disease, that I also would have considered an "elderly" illness. One of those that yes, after many years of age on the bones, we become less active, lose muscle mass, then bone mass, and as we get older our bones are more prone to "break".

Well, if you look at my picture, would you think I have not only "osteoporosis" but, in fact mine is considered as "severe" as it gets. My bones are about the age of an 80 year old or more.

The look on my face is one of longing. Longing to be able to pick that guitar up again and carry on with the "lessons" I had been taking, the music I had been playing, on it, as well as my drums and keyboard before this horrid chronic illnesses, such as Lupus, RA. Sjogren's, Raynaud's, Osteoporosis, and others took away my abilities by making my body either too weak in places, too stiff, too swollen, or just from the fatigue of them all, causing me to not be able to do so many of the things I loved to do.


I have a great deal more to talk about as far as osteoporosis, how it affects women, especially when you begin to lose bone mass during the beginnings of menopause, how you can help your own "bones" by some preventative measures, eating properly, not smoking, daily exercise, and an active lifestyle are ways to possibly "defer" from the "bone breaking" disease.

Yet, other things cannot be helped, such as having to take medications such as corticosteroids that reduce bone mass, chronic illnesses such as Lupus, Rheumatoid Arthritis, and many of the other Autoimmune Arthritic Diseases that contribute to this illness.

For more information you can do your own research at :

National Osteoporosis Foundation - http://www.nof.org

National Resource Center for Osteoporosis and Related Bone Diseases - www.niams.nih.gov.bone

International Osteoporosis Foundation - http://www.iofbonehealth.org

And of course always check with your physicians for more information on osteoporosis and any other of the bone related, or autoimmune arthritis diseases.

Thursday, January 23, 2014

A Bit Out of Commission - Surgery and home recuperating

Hi All,

After double hernia surgeries yesterday, I am home, a bit in pain, and sore, and up and down, trying to recuperate. :)

I appreciate all of the well wishes and prayers... and bear with me as I shall be hopefully more up and around in about 2 or 3 days.

I have huge plans for my blog, and for helping with the Systemically Connected Blog for the IFAA!!! I am so looking forward to helping Lorna!

I also loved the "Blog Leaders" and all of the interviews we had last week! That was so much fun! I am getting each of you up on my "blog list" here. I have some already, and as soon as I am a bit more able to sit and think ( I am a bit still foggy from the anesthesia.... I will get everyone's listed!!!


I look forward to Kirsten and I getting to meet in D.C.!!! I got my flight booked and my room booked! Now just figuring out how to take my entire closet!!!! LOL!!!

More to come... please keep comments coming... I would LOVE to know what YOU want to see....:) Rhia

Sunday, November 3, 2013

8 Complications From Lupus...

http://health-tools.health.msn.com/lupus-health-center/8-complications-of-lupus?did=t2_mod2

The sad part of this is many of these "complications" are what cause severe illness, and decline of health almost more so than the Autoimmune Illnesses themselves.


Take a look at how many vital organs can be a part of this… the heart, the lungs, the kidneys, the bones, blood vessel (which I believe are considered an "organ")… and more… all of which those things can be not only life altering, but deadly!

I've had complications with osteoporosis (by the way which is considered SEVERE). I've had the skin issues, petechia, severe bruising, the "wolf Mask" the Mylar mask. I have have the horrible looking very purple rash type skin issue on my neck, and it runs up one side behind my ear of my upper neck, and then on the other side it runs up onto my jawbone, and all the way here lately around my mouth!!! I just noticed it around my mouth about a month ago. I already use sunblock, creams to fade out this mess and so forth. I found another Avon product and decided to try it. I'll be damned if I have not already noticed it fading out some. Thank goodness.

Then of course I've had not one but TWO heart attacks. Which may or not be related to the Lupus. I have a tendency to think somehow they are. I have "Lupus migraines". When I have a Lupus flare usually it begins with that damned horrible Lupus migraine… the ONLY thing to relieve it is a large dose of Solu-Medrol, a corticosteroid. Nothing else will touch it! As much pain medication as my internal pain pump delivers, no pain medication does anything. Only the steroid will take it away. It goes to proves it is an "inflammatory" type of headache. I have to wonder year ago (I had my first migraine at 17) if they had given me steroids then when I had the headaches (migraines) if they would have went away. I spent years fighting doctors for medication, ER visits over the years, losing jobs due to having them so badly, I would miss too much work)…. and so forth. I still believe my "autoimmune illnesses" began back then. I believe by the age of 20, I had many of the signs of them. But, at that time, doctors barely even knew what RA or Lupus was. Much less how to treat it. Anyway…. this is a great article… and should give many of us something to contemplate as we shop at our markets, and eat in the fast food, and also regular restaurants also. They also LOAD the salt up in their foods to make them "taste better"...