Showing posts with label Rheumatologists. Show all posts
Showing posts with label Rheumatologists. Show all posts

Friday, December 9, 2016

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

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


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

Challenges

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


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

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


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


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


Victories     


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

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

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


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


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

continuing with another "Victory"

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





Sunday, November 6, 2016

Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016

Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....

 

 

Dear Rhia (self),


You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.

When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.

You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.

My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.

I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.


When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".

I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.

So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.


#HAWMC

WEGO HEALTH

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Saturday, October 22, 2016

Catching Up, Letting You know what is going on in my neck of the woods, and telling you I am still here and will be working on my blog.., so don't give up on me....


 
 What's Going On with Me, Facing Surgery on my neck and lumbar spine, The RA getting worse, going to the "casino" hopefully & giving you a thumbs up I am STILL HERE!
 
 
 
 
http://www.medicinenet.com/script/main/art.asp?articlekey=17685

I've got my reservations to go to Winstar on Monday and stay overnight. Of course I've tried to go at least 3 times over the past couple of months., and something always either happens, or the Lupus Flares on me, so I have to postpone my trip. I DO have many things to attend to, and feel guilty even running off overnight. But, unless this "cold" or whatever the hell hit me a couple of days ago, I hope to be able to get away for a day and night. Lord knows I need it. Actually I need about a week's vacation away from everything. But, then I have the fur-kids, and they already give me enough grief when I leave for a few hours, even with the "sitter" coming in a couple of times a day, they would be a total mess, if I left for that long.

Ironically, now that I am just "me" and "them" (Bub's and Peanut) I spend more times "talking" to them, or talking to me, or singing if I am in the car, or I go into the stores, and I am constantly trying to "quietly" talk to myself. My way of making sure, I don't forget anything important when I go out and do errands.

I've got several decisions to make, some of them have got to be made SOON, like about my Humana insurance. Open enrollment will end on Dec. 7th or so, so I have to make up my mind whether to keep what I have or go to a different plan and so forth. Some things are probably going to change now as far as my insurance, etc. I feel my best thing is to stay with what I have now, even though a couple of my own doctors are not "preferred providers"... this plan allows to me go to a "non-network" provider, and the insurance will pay some after I meet the deductable. That seemed to be okay last year. The only real issue is that my special orthopedic surgeon, unless things change is NOT a preferred provider, so I have to pay his portion of surgery out of pocket, but I know last year that was not all that bad, and the hospital WILL get paid as a preferred provider, so, that makes it a great deal better. I've learned after my hernia surgery, when my doctor was NOT a preferred provider, but the surgery center was, he was kind enough to knock down the price on his end, so I didn't have to pay him a great deal, and in fact I think they sent me back a little bit of a refund.

But, of course, since I put off TWO surgeries last year, both of which this orthopedic surgeon is the ONLY one I trust to do anything to my neck or spine, I will have to encounter bills from him for that. By the time one surgery is done though, I should meet that deductible thus that way, I may not be out of pocket a great deal for the 2nd one. My neck is a must. Plus I don't know what we are going to do about the RA. My right hand, of course my "dominant" hand, is in such horrible shape now, that after trying to stir something, or cut a couple of small limbs, or paint on a wall for even a half hour, cannot open jars, and I can't carry much of anything with that hand and arm. The swelling had increased so much between my thumb, forefinger, and now I have developed a "lump" on my forefinger, which is probably from the RA, and that arm and hand, wrist, continue to grow weaker all the time. I FORCE myself to use it, so I can keep at least some strength in it, but it will almost "lock up" at times, with the RA, so bad. I had a follow up with my Rheumy about 6 weeks ago, and they put me back on the MTX, but it is not working at all. The dose is not as much as when I was on it before, but I don't think it will be the answer.

I also suspect that some of the pain, weakness, and so forth are from my neck, rather than just the RA. With one almost completely flattened disc, and another one probably almost as bad, those in themselves can cause the weakness, pain, stiffness, and some of the symptoms... plus now I find it harder to turn my head, my shoulder blade is beginning to have that "burning sensation" from the compressed nerves in my neck, and now even sitting here for a little while trying to type, that hand, arm, shoulder blade, and even down into my "side" are hurting and feel like muscle spasms, especially in my right side. Of course everyone with any type of joint, cartilage, and bone issues, know that when this weather changed, it did NOT help matters.

As I mentioned at first, I'm either fighting off a cold, or hopefully NOT some type of throat infection. I even almost felt as if I was losing my voice, late yesterday afternoon, and my throat has been kind of sore, along with my lymph nodes once again hard as marbles under my ears.

So, that is why I said I "hope" to be able to get to go to the Casino without having to postpone it again, since my body is trying to fight off "something"... here in town there are a growing number of strep throat issues, along with what they may call it scarlatina, It is a very red rash that goes along at times with strep throat, and there was an article last week in the paper here that our doctors are seeing many cases cropping up...

Out of everything I HAVE had, (I hope I don't jinx myself) I've never had "strep throat".... I had horrible tonsillitis & had those taken out when I was about 12 or so. But, I've never tested positive for strep throat, which is a good thing. You can be a "carrier" though and not have a case of it. Neither one of my kids had strep either, ear infections, they outgrew, but not strep.

Anyway, I am actually working on a "list" or in the process of, the things I need to get done (LIKE GET MY HUGE HOUSE PLANTS IN) before the weather gets too bad on them... and believe me, almost all of them, especially 3 of them are so huge, thank goodness I have this "roller type dolly" made for plants to try and get them in the house. My Palm tree now that has put on 3 or 4 new prawns over the summer, stands taller than my front door. And my fern, that started from a half dead 2.00 one I got at HEB is about 20 feet or so in diameter, and they take up a great deal of space, and are very heavy.... plus I have 4 HUGE Airplane plants, that are as large as I've ever seen so they also are extremely heavy and bulky... so again I am glad I bought that plant dolly a couple of years ago.

The BEES are about gone! He came back out last week and collected as much honey out of that bus as he could reach. It was between two of the heavy metal pieces inside the bus, and he had to cut into all of that to get to the main hive, found the queen, and he said there are now more than 40,000 bees, that came out of that bus!!!!

But NOW, getting someone who has the truck, trailer and wench to pull that piece of heavy bus up onto a flatbed, and haul it to Maverick or someone they can sell it to, will be a chore. I've tried to get the word out, because I am sure with all the heavy metal in it, it would bring some bucks, if you could get it hauled to somewhere like that, that buys scrap metal.

Anyway, there are always a billion and one things you can find that need to be done when you have a home.... I had almost forgotten I STILL HAVE THAT DAMNED BROKEN GLASS in my back bedroom... that I have almost solidly taped in with Duck Tape, and have cardboard over it, but I fear at anytime it could come crashing out of there. I could put a new piece in myself, but needing someone else to help hold it up while it is "pinned" in and then glazed or hell I've put some caulking in a couple of mine in that back room for now. It helps to sturdy that old glass pane stuff, for now, and really those 5 windows need the other "storm type windows" put over them like the rest of the house...So again another project... they just keep coming and coming...

I have got to get busy, so I close for now.... again still lots of stuff needing to be done, taken care of, and so forth... thus the reason I am not here very much. I am online some, looking things up and so on, but I don't have a great deal of time to post on FB. I do well to post on my blog, and do a couple of other things...

Hope all is well with each of you.... Me....

Wednesday, October 7, 2015

Nervous Day as I head to see my Rheumatologst in Dallas and we decide on "options" as far as medications....

He is a very busy and awesome Rheumatologist. But, too busy ow, since he has went back to doing research, teaching AND seeing  few patients.... I've been disappoinnted a couple of times, when they "mis-scheduled" me and I had to see the PA, or NP... never of which I like, nor I believe... they never "check" me over, and never try to "look at" my chart to see what I have, have not, what my Rheumy has done, not done, wants to do etc... they just fly in the room, ask a few questions, and run out... with see ya next time... then I have to come home and send an email to my Rheumy, and tell him I do NOT like how I was treated and tell him what is going on....

Anyway, supposedly I get to see him for the 1st time in a YEAR! Yes, it has been a year since he actually came in the room to see me.... and there has been SO MUCH that has happened, from the cellulitis, to the blood work issues, to double pneumonia, to the abscess on my thigh, to the other lump on the other thigh... to swelling in my fingers, ankles, thumbs and wrists that hurt like hell... my back... and the list goes on and on... so I have MY LIST ready for him today... and I hope to get my MONEY's worth since where he is now does NOT take my Insurance! The last visit, that over the phone I was told would be about 80.00 for an office visit, since I am a very well established patient, when I got through was $270.00!!!!! Yea, like I could afford that... I was so mad, I was in tears... NO ONE bothered to tell me that until I had already seen the PA whom did NOTHING for me at all what so ever... and I leave more broke than when I went in, and not any help at all....  

Anyway, I will post more after the visit this afternoon, so keep me in your thoughts...

Wednesday, April 29, 2015

"I Wish I would have known? - WEGO Health Writer's Challenge - April 29th, 2015 Wednesday

Today's "prompt" for the next to the LAST day of the 30 Day WEGO Health Writer's Challenge, is "What I wished I had known in the beginning of my patient journey?" In other words, when you were first diagnosed, what do you wished you could have known, asked about, done, been more capable of understanding and so forth.

One thing that comes to mind is I wished I had known more about different types of "Rheumatologists". Our physicians (and I say this often) have almost "specialized" themselves out of the everyday field of medicine.

Rather than have as we did not that many years ago, a doctor, or physician that could see you for a flu bug, take out your appendix, deliver your kids, and give your kids their immunizations. My kids are now 35 and 30 years old. Yet, they both were delivered by our regular physician, that did all of those things. Even if one of mine had been Cesarian, he could have delivered him or her.

A medical doctor was a doctor of "all". Unless you had something that was really extremely unusual, they did not send you to a specialist to "set a broken arm". If you needed stitches, they did not send you to a plastic surgeon. When babies were born, you didn't have to go to an OB/GYN. Even some surgeries, were performed by your regular physician, unless it was some "off the wall" type of surgery.

I began to notice, right after my youngest was born, that doctors began to "not" do everything. If one of mine had an ear problem, off to the ENT doctor we went. If you needed surgery, let's say "female surgery", a hysterectomy, you saw your OB/GYN.

Then when it came to cancer, you were sent to any number of "cancer" specialists. It began as kind of an "umbrella" physician, an Oncologist. Then you began to see that branch out into "breast cancer" specialists, brain cancer specialists, intestinal cancer specialists, and the list continues on.

If you had a joint that needed surgery. It maybe that your regular "Orthopedic surgeon" may not do a "hip surgery" or "elbow surgery". You had to take yet another step into the "Orthopedic Surgeon" who specialized in that particular joint.

Now, it is almost insane. When I hear or see just home many "specialists" there are depending on what is wrong, it can make your head spin.

So, had I known that a "Rheumatologist" that worked with RA or Lupus patients, maybe totally different than one that was more into other autoimmune illnesses, I may have seen the proper doctor a great deal more quickly than I did. My very first "Rheumy" as we call them, was very up in age. In fact, he still gave "gold injections" and this was about 2007. So, at the time, seeing him may have been the right thing to do. He "named" off after extensive lab studies, and also seeing me several times, a "few" different autoimmune illnesses that I have. He began with MCTD ) "Mixed Connective Tissue Disorder", Raynauds, Sjogren's, possibly Lupus, but he was not "set" on RA. As I said he was really up in age, but honestly he was one smart "cookie".

Yet, due to his not wanting to be as "aggressive" with the latest medications such as the biologics, I make the decision to find another Rheumatologist that would be. Well, little did I know, until after seeing 5 or 6 different ones, finding someone that would "treat all of them", in an aggressive manner was not easy. Each one either specialized in Lupus, RA, and so forth. Plus they were not much into the latest of medications.

So, had I truly known the factors surrounding getting into the proper Rheumatologist, I may have been able to "prevent" some of my problems that were getting worse, due to not being treated.

I also wished I would have began researching the medications, treatments, and doing my own blogging sooner. Even though I had done a great deal of research, when it came to the Sjogren's especially, I didn't do enough, soon enough I fear. Had I really known just how quickly Sjogren's was completely destroying my teeth, I would have searched for either a dental specialist on Sjogren's, or made sure my Rheumatologist did know about Sjogren's and was more apt to let me know just how bad it could get so quickly. By the time I knew just how bad my Sjogren's was, it had already rotted my teeth from the inside out. It was not until after the first two broke off at the gum line, and I went in to get a full mouth digital X-ray, that my teeth were goners. There was no more patching to do. There was basically nothing left to try and "save". So, wishing Sjogren's had been one of these that a really got adamant about, maybe, just maybe, I would still have some of my teeth. Now, my dentist told me, that even if I had known around 2007 more about it, since there are really no "medications" designed to fight it off, and the two I took really didn't do much. It was already too late. Thus, I spent all of 2014, getting the entire mouth of rotten ones all pulled, getting dentures, then going onto having "mini implants" for the bottom dentures, so they will stay in place.

I also wished years before I got an "official" diagnosis with the autoimmune illnesses, I had really pursued the reasons why, at well before the age of 40 years old, my joints were in need of surgery. I had 3 knee surgeries, an elbow surgery, a shoulder surgery, and many of my joints injected from about the age of 21 to 40! The answer I got for the most part when I did try and ask "why". was always met with, "Well we don't really know, But I feel you probably have "arthritis" that has surfaced early due to "genetics". Well, it was true, my Dad and Mom both had arthritic issues fairly early in life. Yet, nothing like mine where anything I did hurt.

So, more research, a better understanding of doctors, and asking more questions are things I do wished I would have done differently, more, better, etc. when I think back on when all of my health problems first began.




































Tuesday, October 28, 2014

How "Serious" Do you Take Your Autoimmune Diseases and Diagnosis?

I had thought about this question last night, for some unknown reason. I knew last night I needed to sit down and write about this ASAP, before the brain fog kicked in and I forgot what I wanted to say or even write about.

Yesterday, was one of those days that I had or needed to play catch-up. I needed to pick a few things up from the market, needed to make a trip over my Mom's, and as the 2 days previously, since I had gotten little to nothing done, I felt I needed to get some stuff done. Last Wednesday I had felt "fine", or well enough to dress, put my makeup on, dressed a bit more decent, and get errands completely. All of what I needed to do, meant running and trying to get everything caught up. So, off to the bank, to the cemetery, to put gas in the car (it is 2.67 here!!!!!!!  YEAH!!).. air up the tires on the car, take some magazines to the library, run into get some prescriptions of mine picked up, then to Wally World, for a few items I can't get anywhere else. I did get it all done, Then I had to come home, put all of that stuff up, get Jim, and take him to drop off some paperwork to a potential pain physician and he also needed to sign a document in front a Notary. So, we also made a 2nd trip to the bank to get that done. From there Jim needed his flu vaccine, so we headed for CVS. Well. that turned into all for naught because in the 1st place his insurance WILL NOT even pay for the flu shot, which has gone up now from about 23.00 a few years back to well over 32.00 this year!!! Yes, I know, I know - everything has gone up but damned... also there are several strains in this vaccine than used to be, but I don't buy all of that, because the pharmacies and pharmaceutical companies are RICH!   Honestly, my belief is that ALL people should be able to get the flu shot at NO COST, if they make below a certain amount of money... NOT allowing those that want the vaccine to get it, just causes more people out there that have the capacity to get sick, and run up a much higher bill that a darned flu vaccine. So, I am not sure I get that 32.00 ordeal. I just saw on the news last night how MUCH MONEY OUR COUNTRY LOSES during flu season, for those especially that DO NOT get the flu shot... and you can believe many of them WOULD had they been able to pay $5.00 for it, or whatever they feel than afford.   

All right, back on the subject that I began this entire blog post about. I have had a couple of "epiphanies" about my own chronic illnesses and chronic pain issues over the past about almost 8 months or so. I always "felt" as if I had accepted the fact that I DID have RA, Lupus, Sjögren's, and so on... along with several what I would call "sub illnesses" that have followed right along with the natural progression of these autoimmune diseases.

As I have come to figure out lately though, I really HAD NOT met these illnesses actually face to face, nor had I truly down deeply that I had not accepted that I am chronically ill, with diseases that at this time have no cures, and even though we have some medications that certainly due help to slow down the progression of some of them. I think the very first time I truly felt I was "ill" was the day my very first tooth just fell out of my mouth coming loose at the tooth/gum line for no good or practical reason. Of course I've tried to be prepared for the day I would begin to have dental issues due to the Sjogren's BUT... never was I prepared for it to happen this soon, nor that fast. From the moment the first tooth fell out, within three weeks 2 more had basically done the same. I was at the dentist more in a month than I had been all my life!!! By the time 6 months rolled around I was missing at least 7 teeth, and I believe at that time in my life, struggling with the teeth, the thought of dentures that I SWORE I WOULD NEVER have... was almost more than I could handle. Little did I know it COULD AND WOULD get worse before things would get "better"... Christmas 2013 was not the most memorable... money was very tight, I seemed to have been ill with one flare after the other, bronchitis and it did not want to go away, and even New Years came and my Birthday fell in February, and the upcoming Arthritis Foundation Summit was coming so soon in March. Yet, I had not been able to get my biologic infusion of the Rituxan (that is AFTER WE FOUGHT to get it paid for, because my insurance refused to pay all of it, thus the infusion clinic had gotten the infusions approved through their private charity program. ) But, I had had way too many issues with infections, bronchitis, & a large dose of step prednidone due to the flares, I was just down and out until the very last right--I at the last moment made a trip to our urgent care center to get some last minute treatment for a Lupus flare that had just had me down and I couldn't go (this was Friday evening and my plane was due to take off MONDAY at 6:00AM). so this was the last straw in the box per se'.

Well, someone much more MIGHTY than myself handling things. By Sunday, I was able to pack, still not feeling like jumping over the moon, but compared to the week before. So come VERY very early Monday morning. Even up until I was getting my luggage out of the car, and checking my bags it has not hit me, that I was headed for Washington DC. Once I was on the plane, settled in and on my way, it hit me, I truly WAS HEADED FOR THE SUMMIT IN D.C.!!!

After the accident on March 26th, 2014 - everything went to hell in a hand basket. I believe the night I first came home from him having that massive back surgery, it hit me square in the face, that I had CHRONIC AUTOIMMUNE ILLNESSES, and I had better get hold of myself, or I would lose it completely.

 So, for the very first time rather than this frivolous thought of "yes, I have autoimmune illnesses" that I take medications for daily. MTX, Plaquenil, and usually a biologic, now we have added Orencia in, it will be here Tuesday and Sulfasalazine. It hit me so hard, that I literally had to sit down on my chair in front of my computer. Here I was, even being a voice, an advocate, blogging about them, Facebook page and posts about them, seeing how many others suffer with these illnesses, yet, I had never really settled into the mere facts of DAMMIT the hell, I have Lupus, RA, and autoimmune illnesses... which mean forever unless someone happens to invent a cure in the next few years. My mind was spinning, my head full of thoughts... how would I survive, how will I ever be able to help Jim, how can I keep on writing my book, my blog, doing my advocacy, my activist, my Ambassador work. Will I still be able to help Mom??? Question after question rattled through my brain... and with each question, the "other side" of my thought process had an answer... and that was YES! The "answer" was much simpler than the questions were. Inside, somewhere, somehow, I knew I would be able to "handle it all"... that may mean a change in all kinds of things, and especially letting go of what "normal" used to be and begin to accept what "normal" will be as the next days, weeks, and months go by. I was more in fear of the "change in normality I believe" than I was the illnesses, or Jim's physical situation after the wreck or any of that. Change is something that is frightening to most of man and woman kind... WE are truly creatures of habit. I realize very often we don't seem to be when we are younger. But, for the most part as we age, we don't do as well with change, uprooting your roots you have put down for so long, chopping them down, and learning a new "normal" is almost impossible for some people.

I could no longer sit there trying to figure it all out in my head at the moment, because so much "unknown" lie ahead... how long will Jim be in the hospital?, and all of his physical, mental and emotional changes, it will take time. So, I "picked myself up", and I got busy with notes of what needed to be done, when, where, how and so forth. I also had a couple of things I HAD TO DO FOR ME! #1 was at the time I needed to get my Rituxan injection. I was well for a change, even though worn to nothing due to all of the drama surrounding the car accident and Jim, but I did one day go and spend about 7 hours getting the first infusion. In two weeks, I was to go back and for the 2nd round. Then I should be good to go for about 5 months.

Little did I know, before two weeks rolled around, about 5 days after the 1st infusion, I began to have the strangest things going on. I "heard" voices, I was almost to the place of hallucinating, I was not sure if I was in my own "home" or not... I could not write, barely type legibly. I was talking to the voices, all around the house and walking the floor. I paced up and down the living room through the office and into the kitchen at least 50 times maybe more. But, I could not put a finger on what was wrong. I felt "sick" in some ways, but again, I was not quite sure how. I was not really coughing, but in ways I felt a bit feverish. Finally, for some strange reason, due to the fact no matter how ill I AM I don't run fever, but I decided to check it anyway. To my surprise I was running almost 103 degree fever!!! Well, that explained the strange voices, and the oddness I was feeling but where all of it was coming from I was not sure. This was a Sunday afternoon, and that meant no doctor would be able to be contacted. I certainly did NOT want to go to the ER, too much hassle, but I did know that we have an Urgent Care Clinic here now, but whether they were open on Sundays was a stretch.

Another thing, I honestly knew I should not be driving alone. I feared having a seizure. Even though I was taking aspirin, the fever was staying fairly high. And they strange things I heard, saw and felt would and could mean I very well with fever that high have one. Thus, the alternative was to call my Mom, Which I really did NOT want to do, but there was really no other way, unless I call 911, which was ridiculous, unless I did either get the fever higher and I felt I needed medical attention extremely. Well, as the story goes on, my Mom takes me, they are open thank goodness, and I have double pneumonia... of which the physician that saw me happens to also be an ER physician at the hospital. Which was good and bad. Because I was so ill, and had all of these autoimmune issues, he felt I needed to be seen by them, and evaluated to make sure I didn't need IV antibiotics... I begged him to try anything else first, but don't send me there. After I told him about Jim, and all that was going on with everything, he reluctantly allowed me to go home with high powered antibiotics, complete sofa rest, for at least 7 days, hydrate, watch mt temp several times a day. AND if I FELT ANY WORSE or could NOT get the fever down, I was to go immediately to the ER! So, I promised I would have my meds filled, go home, and not move off the sofa for at least a week. Basically that is what I did, other than having to take out trash and changing the dogs food, water and paper... I stayed at home, watched movies, took my medication and drank loads of green tea, juice, and ate very light stuff... and it took me almost a MONTH to truly get over it all. I never developed a cough but some people don't with pneumonia. I am sure between being so ill, then going to DC on a load of prednisone, then suddenly the accident happened and I am rushed on a plane before I think I really realized it. I had been in the very cold, snowy, but not dry snow, very wet snow in DC all day long, for 2 days walking in it for hours... and to put icing on the cake all of that happened... then I took the Rituxan, so that make the cherry on the top.

That also slammed me in the gut, with a punch... if I had not had the autoimmune Illnesses I "may" not have gotten that ill. But, it could be that no matter AI or not, I still could have contracted the pneumonia. That was in early April and went on for weeks honestly, As I said above, I was not sure I would ever get over the fatigue, tiredness, dizziness, the feeling like hammered crud every morning... I ached and I was sore... and stiff... but I did ... slowly I recovered and by the Grace of God, I did without going to the hospital which was an excellent thing and a miracle.

So, twice within a month, I had been really slapped hard in the face that I had chronic illnesses, that would NEVER go away.
                                                                       
Lately, the "dreaded" head of the Wolf popped it's head up when I got to thinking about how much medication it takes to keep me well. Then I go to get the flu and pneumonia vaccines, and become suddenly "ill" for no real reason. I cannot really say that is was either one of the vaccines. I've had the flu vaccine now for years, and I had taken a pneumonia injection 5 years ago and I don't having that could possibly cause me to feel as if I did have pneumonia and the flu at the same time. But, that is how these illnesses go. What may happen to you one time, may never happen again. Or something that has never reared it head, suddenly shows up out of the clear blue ocean, leaving you to wonder why the hell it came from.

I've learned as difficult as it is each day of my life, to try and not stress over the "little" things... and try to make best of the good things... also... when these AI illnesses decide to act up, flare, be in commission, or however you want to say they are "active"... to allow my body to "tell me" what it needs. Whether that is rest, or not, whether it is a certain thing to eat, or whatever needs my body, mind and spirit needs at that time, to try and slow down, and allow it to work itself out. Sometimes it may mean just a day of rest and movies. Another time it might mean a full blown flare and a trip to my doctor for a shot and prednisone. Others may put me on the sofa for days, until it is going away. It is never easy to "slow down". Each of us know that life seems to be moving more quickly than we can keep up with when we have a chronic illness, or deal with chronic pain.

The very last moment I had lately of "Hey, stupid, you DO have an autoimmune (bunch) of illnesses, that are REAL, and nothing it "in your mind" and if it is then it needs to be there so I will "listen" to my own body. I was just going through my home room to room, looking at what we need to "finish" the whole house inside and out needed to be completed. We ran out of time and money when remodeling at purchase time, thus we still have thing that really need to be completed. So, I was throwing thing out, knowing some things are just not anything we will use anymore. My "Motto" is if we have not talked about, looked at, worn, used... something in the past 9 months, then out it goes ... and as I gazed around at ALL we need to achieve it truly once again knocked me almost to my knees... I am ILL with diseases that have taken away my ability to "run like the wind" as I did a few years ago.

When did you first have a "reality check" about your autoimmune illnesses or chronic illness/pain issues? Was it as the very first part of a diagnosis, or did it really hit you hard later on, months or even really years later, that they or it is for REAL!!! You weren't living in some kind of night mare...????

Rhia
 

                                                               
                         

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....









Sunday, October 12, 2014

PERSONALLY - World Arthritis Day...

Personally, I've not put much up for WAD! I have been so busy wanting to get pertinent information out there from the URL's and so on, that I haven't taken the time to "step up" to the plate and give my own feelings, impressions, and how things are looking for myself and my own issues with Arthritis, both Osteo and RA. My other AI's from Raynaud's to Sjogren's, from Lupus to MCTD, from the upheavel of medications that we are constantly changing to try and find a combination that "works" for me, doctors, new symptoms, how my Medicare Advantage Plan appears to be taking a run for my money next year I fear, to all of the "busi-ness" of life, of the accident of course we are still dealing with, left right and center, to my own personal issues with my writing, and what I want to do at home, versus what my body "thinks" I should do.

My Sjogren's issues are far from over. I still have another at least 6 weeks possibly more, before I am able to really stand to keep them in my mouth all day long, eat with them, and adjust to how they feel. I am learning to
keep them in to eat now, but the bottom plate just does not cooperate as it should. Once those mini implanted pins are set into my bone, that is supposed to stablize the plates, both top and bottom, thus I so hope and pray that is true. I know if this does not do the trick and gets them where they are more comfortable, I may be like my Mom, and have to take them OUT when she eats!!! LOL! I always wondered why when we go out to eat, (she has partial plates not full ones) that she takes both of them out. Now I totally know why she does it. When I eat of course food sticks in them, much like your own teeth BUT, it is not exactly the same. It is much more difficult to get food out of the plates once it gets underneath them and all that packs underneath them. The ONLY way to get it out, is to excuse yourself to the lavatory and clean them out. I would much rather do that though and eat with them in, rather than have them lying on the table as I eat!!! Kind of defeats the entire purpose of having them, and going through all of the trouble, time, pain, and suffering to reach the goal.

The weather is REALLY reeking havoc with many of us. I know here in Central TX we are having a dramatic change in temperature, of humidity even during one day. The humidity might be almost 100% in the morning, and by the afternoon drop to 30 percent. Plus the days are beginning to get "shorter" and I just not am adjusted to the longer days. It really does suck, or at least for myself, it sucks to have yourself in the midst of a change just about the time, your internal clock sets itself.

The Sulfasalazine, which I thought we would be up to 3,000 mg by now. Yet, due to lack of communication between my Rheumatologists nurse, myself and my Rheumatologist had not realized he told me to take 2 of the pills - 1 at a time for the first 14 days. Then begin taking 2 pills at a time, twice daily.  They are 500 mg tablets... so two of them make 1,000 mg a day, then I was to take 1,000 each time and read I could go up to 3 of the pills twice daily, which is usually what an RA patient works up to after a few weeks of the medication. So, 3 at a time would be 1,500 mg and time 2, make 3,000 mg a day. I already know my blood work was okay, because my PCP ran it for my Rheumatologist, and they told me the results when they were faxing it over to the Rheumy.

I am getting quite disenchanted with the biologic medications. First of all, my insurance can't make up its mind which ones it wants to pay for and which not. They used to pay for Humira, Enbrel and Orencia. But, they did NOT pay for Simponi, and when it is an infusion, it is hit and miss as to how and what they pay honestly. I've already tried Rituxan, and the last round, is when I came down so ill with the double pneumonia. Even though I am almost positive the medication only played a small part in the illness, with all that was going on there, my Rheumatologist is not really thrilled about taking a chance again with a biologic that seemed to contribute to me having infections. I show to already be having some chronic lung issues from what the Xrays show from the pneumonia, and it is kind of like an asthmatic chronic COPD thing, although smoking also probably has little to do with it. I smoked a total of about 10 years, and never over 1/2 pack day, most of the time less. I've quit all together, and even though we still have the "e-cigarettes", I am not even really using those. I just am not having any type of "craving" for them. Some days when I am really in horrible pain, and/or really badly stressed out, I may think to myself, damned I wished I had a cigarette, but other than that I could care less. Of course for me, I could go and buy a pack, put them away, and just smoke one when one of those "moments" come... I probably would not even smoke an entire pack in a month, probably more like two months... but if some people have even one, then they have to have it all over again... strange as it sounds its true.... Kind of all an alcoholic or any type of an "addiction" one might have... some people just cannot be satisfied with a tiny bit, and then leave it alone for a long while. Only using that, whatever it may be, only on those horrid days or moments that life feels like it is pulling itself right on over the top of you, and the darkness continues to grow and fill in like a dark black, no way see through ink or pain. 

I've been working on some other "volunteer, activist, advocate, ambassador type of projects", in between all of the doctors, medications. lawyer junk, paperwork, pain, and feeling generally like hell lately. I feel like I have found a couple of places, beside my blog and Facebook pages to truly help others and bring more awareness to all, especially when it comes to our health care laws, Capitol Hill, Congress, and all that can involve. I have come face to face, and toe to toe, with my Federal Congressional Representative Barton, and some of his staff. I have also been trying to find contacts in the office of our Senators here in TX. Actually I am trying to get the attention of both our Federal and our State Legislatures!!

Wow, talk about an education to learn how the wheels (clogs), (clocks esp. cuckoo) ,the bureaucratic bunch of bull red tape, the bend over and kiss butts groups, and talk about really learning how the "cow chews the cud" - I have so seen with my own eyes thinking that I was "up" on the political scene. Well, I have definitely found I had more to learn when it came and will continue to come face to face with the entire ordeal, full circle of how MUCH politics effects EVERYTHING!!! From business, to taxes, from your home, to your safety, from flying to riding in a car, from makeup to your hair coloring, from the BC powder I take, to the prescriptions medications.

It just amazes me the older I get, the more I know, and the more I have to learn about. There is never a day that goes by, that this old dog' seems to learn a few new tricks! I believe that is a portion of your "legacy" of having chronic illnesses, especially Autoimmune Illnesses. You are just given over a brand new educative process... because if you wait to let our "health care nation" educate you, more than likely you will NEVER understand a damned thing that is wrong with you, physically, mentally, emotionally... and within your world. Our "world" in the autoimmune "bu-si-ness", it a totally realm of birth right that has light and dark at the same time shining and blacking out our psyche. If you EVER ARRIVE at that MOMENT you "get it"... you can bet within 24 hours, all you figured out will be shot down, and went to hell in a hand basket, if it has a thing to do with AI diseases, syndromes, illnesses.... have you ever wondered what the difference it is between an "illness", a "syndrome" and a "disease"? I have given thought to it, but up until this minute I guess never decided it was a huge enough ordeal to look it up. But, since I am sitting on that "needle" the proverbial one in the hay stack... I am headed to "google" the differences. I will post them below, before I go on with my blog post.

All of these did come out of a "medical dictionary online"---
 Definition of ILLNESS: an unhealthy condition of body or mind : sickness  
 Definition of DISEASE : an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors : sickness, illness—called also morbus
 Definition of SICKNESS
1: the condition of being ill : ill health
2: a specific disease 
 Definition of SYNDROME : a group of signs and symptoms that occur together and characterize a particular abnormality 
 Definition of PHENOMENON (or Phenomena) as in Raynaud's Phenomena
1: an observable fact or event
2:  a : an object or aspect known through the senses rather than by thought or intuition b : a fact or event of scientific interest susceptible of scientific description and explanation ....
I really do not feel looking up those even in the medical dictionary helped much. They still all come out to the meaning of the odd... but when I have more time, I know there has to be an in depth reason for calling something a "syndrome", rather than a "disease"... or they would just have called EVERYTHING one word... illness, disease, sickness, syndrome, phenomena,  ...


Anyway, I got all off my own thoughts, walked away from the computer and decided to take a long, warm shower. It has cooled off here today and been on of those dreary days of a typical Fall. No sun, all cloudy and our temps have dropped down, and feels like we have had 2 early mornings, at the 57 degree range... Just plain cool first thing in the morning!! And as ALL know or most, BONES and JOINTS that have arthritic issues, or those that have autoimmune illnesses, this time of the year is not our best. Many of us go into almost a "hibernation" mode... We cringe at the thought of the "cold" weather coming in, and the grey days tend to bring on a depressive way of thinking... As we know seasonal depression is always around in the Fall and Winter... and then we have the pressures (if we let them) of the holidays, family, friends, parties, cooking, cleaning and all of that bologna ... as much as we all love family, holidays, friends, and the beauty of the Christmas decorations, trees, all of the sparkling lights... none of that really makes a difference if your body feels like heck... then your holiday spirit feels down in the dumps too.

Around here for me, it has seemingly turned to either feast or famine. I am either running around trying to get everything taken care of, and wondering how I will deal with it all... to the place I am "looking" for stuff to keep be busy. Oh, it is not like I don't have plenty to do, because I can assure you, just right here in the house alone, I have some major projects staring me right in the face.. I really have wanted to redo my entire kitchen, including putting a new counter top on. I was going to just pick one out that is already "pre-made". I noticed they sell them like that at Lowe's.... and it would be perfect for me. I would not have be to concerned about how the heck to do it... it should be more or less pre-pieced for me, and the edges and so forth there to purchase to put the finishing touches on it, I would LOVE to be able to get a TOTAL KITCHEN MAKEOVER!!! New Cabinets at the the doors and hardware, sand all down, brand new handles and pulls... the floor that I've wanted and to repaint it the two blues I've picked out. Then we still have the bathroom that needs the walls completely finished as far as the texture, and even though the lights are up, nothing has been wired in... so the bathfan and all of that I will have to have someone come and help me with that part. I just don't think Jim will ever be able to get back up into the attic again to connect everything. We have it practically finished but that most important part of making sure all is wired in properly, and not going to short out etc... I am not that sure of myself. I've put in water heaters, hung and wired ceiling fans, and done quite a bit of DIY stuff over the years, but between being "eaten alive" by RA, Lupus, Osteo etc... the idea of climbing into the attic and trying to do that sounds like something I should get an expert to do.

Now as far as painting, redoing our music room... getting rid of junk etc... all of those things I will do slowly, and could manage most of it myself... laying the carpet, and then the floor in the kitchen will probably mean getting someone also to help out.

At the time we bought the house, we put a great deal of money in it redoing it. The house was a definite fixer upper, so we redone hardwood floors, completely redid the bathroom even making it twice as big, painted everything inside and out, every room with our "wainscott" look that I am so thrilled with even today. We had to buy all new appliances, had to redo the entire water, sewer, and redo the electrical wiring. The house was in need of so much... and we did manage to do many of the things we planned. As "frugal" as I was though, money ran out before we got through.  

I realize this is "NOT" a typical Autoimmune post full of what all is going on physically, mentally and emotionally in regard to illnesses...

But, I also needed to kind of update everyone about where things stand for myself ...

My plans, and one of those IS to WRITE my BOOK!!!! I've been giving some serious thought to exactly what I want to write; along with how I want to do it. I am keeping the title that Jim came up with, because I believe it will fit when all is done..

I got a bit pissed this week. A guy who also wrote a book of poetry, about 80 poems,  had an "author's reading" and signing at our library!!! Well, everyone made a huge ordeal out of it, even in our daily newspaper.

YET, when I wrote BOTH books... I had to almost beg to get an article in the paper, and I donated copies to our library... and not one soul ever mentioned me reading them, or doing a signing... and MY TWO BOOKS contain about 3 or 4 times the amount in his...

So, I am NOT going to allow that to happen again. My plans are to MAKE SURE I do a reading and signing of my next one... and I hope to have a "full house" at the library as he did....

Sometimes this world is truly NOT fair....

Okay I close for now with I hope you have reflected today on what World Arthritis Day means to you.... and that if you got to go to events etc... that you did so full of joy and meaning... 

Keep watching because they will never get rid of me! :)

Rhia 10-12-2014
 






Sunday, September 14, 2014

Trying to find My Way Back - to What A "Normal" Autoimmune Diseased Life Should Be...


I began this as a post on Facebook early this morning, Sept. 2, 2014. Yet, after writing on it for about a half hour or more, getting up to check on the dog, and my head pounding... it dawned on me, "Get your other stuff caught up... i.e. make some sugar free jello, make the chocolate fudge cake for the weekend, getting the "stuffed peppers" I bought the stuff to make on the day when it was supposed to be cooling down; thus this morning seemed to be the best morning. I had thought about going out to wash my car. I thought if I did maybe rather than continue to "test" and tease us, it would actually rain. Well, so far I was wrong, as it all has done lately. It seems the weather has made many of us hurt terribly. Physicians (some physicians) want to tell us we are full of bull when we say that the "weather" doesn't effect our lives as far as our pain, joints, headaches, and so forth. I know beyond a doubt that from the barometric pressure, to "cool fronts', the humidity, rain, sleet, snow, thunderstorms, you name it, many will more definitely have an effect on chronic pain illnesses, joint issues, and many of the "2nd, 3rd, 4th, 5th and so on, disease that follow right along with the primary diagnosis. I had been concerned lately over "Shingles". I have seen way too many of my online friends, as well as close kin folks and friend that have had a breakout of shingles. I found articles stating people that have never had them, have well over 2 to 1 (50%) chance of having shingles if you have an autoimmune illness. I've been concerned over my illnesses because I feel I can't quite find a place of "remission" in any of them. I am on the medications, I am trying to do everything I can correctly, rest, eat well (ah, that one is hard with the teeth issues I have)           This next paragraph or paragraphs if you would like to say below are what I began on Facebook. I copied what I had already typed on and then decided I am going to "stick" to my word. I am going to post the bulk of the post here, then just put a small snippet in FB, with a link back to it here in my Blog. Blogger has made some changes, some good, giving you more options and other than just add chaos & confusion. I was hoping FM would slow down a bit and give people time to catch up. Sure many of us are "hooked" on line 24/7/365. But, all too often we don't have time to sit around and figure out the "new" things on FB, Blogger, and the numerous other sites we "belong" to. It reminds me of all of the stores I frequent here in my home town. About the time you learn how to use your markets check out debit system,  they bring in one that is "better, bigger, more secure" and also confuses the hell out of me. Then you run over to your pharmacy, same thing, now they handle the entire way you check out totally different. Now try to go shopping two or three department stores! Everyone one of them, either has a new "card" for you to sign up and and get 20% discount. Yes, the first time, and then after that, all you get an email box full of junk from them daily. Then they have all of these mark-downs with an "extra 20% off" at the register, and you either have your calculator out, they might be nice and have a "chart" up on the rack telling you what the cost will be after the "extra" is taken off at the register. Anyway, when you are already dealing in trying to keep your sanity with a brain fog that seems to only be getting worse each week; the lists that have now become the lists of lists you need to take care of and LORD forbid I not forget something for someone, a doctors appointment, or even something as trivial as getting "change for the coke machine, or picking up a drink, some kind of soda that if I don't, no one else would think about how thirsty I get when I am having to drive anywhere, and in fact I cannot walk through a huge store like a Wally World's, unless I stop by a front counter and pick up a drink to sip on while I shop.                                                                                                                 

I've been telling this now for awhile to my family and friends. Not only had my physical  issues change, I seem to have slowed down to a crawl at times. My brain cannot function, I feel it takes me forever to get ready, then I look down and there is always something else that needed to be done, or I forgot to put on "the list" .... heck even times I do well to remember the name of a room, or the name of what is in that room! Store names, my own phone number, it seems that may "brain fog" add          


I thought I would post this on FB at first, then changed my mind. I is a combination of several days posts, I began days ago. I changed my mind and want to put it here first, then really tell about these feelings I have on my blog; then share them that way. I will put this on my blog, but it has been on my mind now since I went to Winstar last weekend with my Mom. As most of you know, due to all of my extensive sharing, I LOST ALL of my Teeth to Sjögren's within a year. It sounds almost impossible, and I know from everything I've read and been told, that they "damage" that could not been seen probably had been going on since I was first diagnosed with Lupus, Sjögren's, Raynauds, RA... and who knows what else. That was back in about 2009-10 when the very first real "blood work" was done, and the doctor took ALL of my years of symptoms seriously to put them together. When he did, I was sent immediately to a Rheumatologist. This gentleman, a Rheumatologist no doubt for many, many years, still even used "gold injections" on occasion on patients. But, he was far from a dummy, and further he end  around the corner there in his office to have blood drawn, urine and he did even a more extensive workup on me. But even that first day, just by an examination of my toes, fingers, wrists, thumbs, feet... he "felt" and the saw the damage. He also saw that I had Raynaud's immediately, and I had an "hyper-extension of many of my joints, almost like being double jointed. Even after that first visit, I was so upset that it had probably been going on for years and years.. my Xrays showed my toes and finger joints being bad already, so none of this happened over night, and not one doctor until my new PCP at the time, could ever put ALL of my symptoms together. It was somewhat almost a relief, yet it also very scary also, No telling what had really come of "damage" not detected since it might have been years this was going on, yet no one could explain the severe migraines, the extreme tiredness, the not being able to "multi-task" as I once could, having just about every joint either already been injected or had surgery or even been totally replaced before the age of 50! No one could truly explain how someone, like myself, a very fit woman, (walked, ate properly, exercised daily, kept my weight down, and yet I had a heart attack at 40 years old and another at 50! Nothing made sense, yet no doctor could put it all together either.. what made my new PCP at the time think "autoimmune issues" I don't know... Maybe a conversation I had with him about me thinking I had "Lupus". Anyway something finally "clicked"... thus here I am today, far into the realms of autoimmune illnesses... and the latest issues the Sjögren's... so here I am now 54 (since Feb 15th) ! battling a battle I thought I would never have... losing my teeth and having dentures... and won't hold until the "mini implants can go in, which will be another 60 days or more. I am not going to lie They are a pain in the butt, or mouth I guess. They seem odd, too much "junk" in your mouth, a pain to have to clean, then put in each morning, then have to brush them, clean my mouth and put them in, then out they come at night... you cannot sleep in them. And eating in them for now is almost impossible. Even my "bite" pattern is completely different, which I am thrilled about, because they are "pretty and I wanted pretty teeth all my life, just never realized they would have to be "fake" and not my real ones. But, I honestly felt like once I got these new teeth in they would "fill in" where I had lost many teeth, which in turn would fill out my lips more, my bottom cheeks and lines around my mouth. I was hoping to "see" a bit different maybe even more youthful (by a few years) me.... but guess what? Nope.... did not make that change nearly as much as that as I had so hoped it would. I just was so disappointed, because I did not realize with the scars from the accident years ago, and the two small scars from my fall right around my mouth. I keep thinking, well, like any other woman, there has to be a way to "tighten" up that skin, or "bleach" out those darkened scars. I even went so far as to  begin looking today and am going to research some of these new facial creams out on the market to see which ones really work, and which ones charge a fortune, yet do nothing. I come more and more to realize I must take even better care of my skin. I have always pretty well used the proper things on my face and skin, lotions, I always take my makeup off at night, allow my skin to breathe and so forth. But, I pray quitting smoking will also reduce some of those lines around mouth. I see elderly women who probably smoked all their lives, and they have all of these deep seeded wrinkles around their mouth, and I always said I never wanted to do look that. But, dammit, when the teeth are out, I somewhat do and it upsets and embarrasses me to have anyone see what it truly looks like. I know we all age, some of us more gracefully than others... and depending on how well we have taken care of our bodies, minds and spirits makes a huge difference in the way you look as you age.

So does having these illnesses like Lupus, RA, Sjogren's age us faster? In all ways, in some ways.... what do you think????? I want to know how you feel about the subject and how many of you really take great care of the hair, skin, nails, including your face? If so, how and do you feel it is making a difference??

             

Wednesday, July 30, 2014

Life this week... kind of like "Hell" Week - from Sjogren's, to RA, to not getting to see my Rheumy... to every other appt on the planet...

Talk about nuts! That does not even describe what this week is and it is just Wednesday.... my Rheumatologist appt got postponed until Sept.... he had a schedule mix up and could not be in the office yesterday. I had been sick to my stomach all day and finally had gotten in the shower (my appt was not until 3pm) taken a shower and gotten myself a bit better as far as my stomach, and as I was drying my hair, I could hear Jim on the phone with whom sounded like my Rheumy's office, I could tell, it was going to be cancelled, and I knew then it would be weeks or months before he is in again. Now that he does research, teaches and just sees a few patients, getting to see him takes a feat of God almost to get in to see him. But his office manager told Jim to have me send them an email & he will see if there is something he can do as far as medication etc before the first part of September until he can see me. So, then I DO HAVE A PIN HOLE pulled in between a molar and my Sinus passage. That is why water pours out of my nose when I try to gargle or anytime I have some water in my mouth and I bend my head over. Plus "air" swishes out of it, making a really odd noise and talk about drive you nuts. He is trying to allow it to "seal up" on its own if possible. He said that one "socket" is healing a bit slower than the rest, but he hates to "mess" with it. He would rather see if it does seal over by the time my dentures comes in  - about 7 to 10 days it looks like... then if it still has not sealed over, he said he would do a minor procedure to seal it in. Of course it always has to be ME with some WEIRD and strange issue... never fails.... he did another type of "warm wax" impression on Monday. He is doing some special work on my front upper teeth to try and minimize my overbite as much as possible. So, he took that in order to do more fine tuning into the dentures before they are made. I am supposed to get to see them next Tuesday I think on the computer. He was still adjusting on them this week, so he say now it should not be much longer now. Wow, when he just put that wax in there my mouth felt so "full".... I hope the hell I can stand those dentures in there. It seems like my mouth is so much smaller than what they will be like in there. I pray it all comes out okay. This has been a great deal of time, patience, money, and more money.... to just get my teeth in, so this has be RIGHT!! And Work! I am hoping that even though I cannot have a biologic right now, I maybe able to be put on "Xeljanz" in with my MTX, or at least up the MTX a bit until I can get something further done for the RA/Lupus pain, swelling, stiffness... I am having mortal hell with it, and there is no way with me going through all of the mouth stuff that my Rheumy would allow any biologic at this time. Anyway, I am sending him a message today asking him if we could try the upping of the MTX or the Xeljanz or anything right now until I get through with the teeth and any chance of infection. Then we can go back to some type of biologic. Things are nuts here... so if I am not around much, it is just because we have an appt every day this week. Plus I feel like someone ran over me twice and back over me 3 times with a train, plane and automobile today. We are expecting storms anytime and bad ones possibly. By the way my body feel, it should be a damned monsoon.... hope all is well with you and yours.... Hugs. Rhia

Tuesday, July 22, 2014

3rd Time A Charm!! -

 It is still not exactly as I want it BUT you can now "comment" right from the front page, where it is "no comments" just click there and a new window where you can comment will open up. Comment there and any other comments will also be in that window. I may still go back to having them right under the post. I feel people are more inclined to "leave a comment", and read any that are there.

 

I am hoping this does help clear some of the mess up. Google really did a number on Blogger when they made the "Circles" and the Google plus 1, etc. Not that they are a bad thing, but it did for some of us cause a nightmare with our blogs. 


I am also seeing a "drop" in people coming in. I realize that is my own fault, with everyone as crazy as it had been. For about 6 weeks, about 4 days of each one has been spent either at therapy, at a doctors office, at the dentist, or something to do with one of us and medical mess. I am hoping that is beginning to calm down a bit. Jim "completes" out of the home therapy tomorrow... so that takes care of 2 trips each week to Waxahachie. It seems like not that much, but it just wrecks the afternoon and evening. By the time you get out, get out of the traffic and get home to straighten out dogs, house, and put things away, it is a hurried dinner of whatever and then all we want to do is sit down and freaking relax. I see my Rheumy next week! Thank Goodness... and I will post at the bottom of this a link to my FB page where I put one pic up of my new beautiful teeth! ;) I will get some when I am dressed and have makeup on next week. But for now my mouth is still swollen, so my face in places is a bit puffy especially my top lip and around my nose.... More very SOON, I promise... I have LOTS of exciting new stuff... some I can tell... others, well it will be awhile, but I still have eons of stuff to catch you up on.... Hugs, Rhia



I FINALLY figured out what the issue was on the "comments" part of my blog. That is where you can put your comments right under my posts. It is ready to go now :) Let me know if you have any problems!


Rhia

I am still having problems on the "main page", but if you go to the "page" of that particular post, then you will see where you can "comment"/. click that and a window will pop open where you can post comments. I know blogger is making a bunch of changes, which has screwed up a lot of what I thought was working. That is why I have thought about going to Word Press. But, then that means a learning curve to figure out Word Press also.... always something...  If this is still not making sense, send me an email at rhia@ravishingrhia.com or redstangblonde@yahoo.com and I will explain fuller.... I want you all to be able to comment! That is my reason for this in part, is so I can HEAR FROM all of YOU!