Showing posts with label medications. Show all posts
Showing posts with label medications. Show all posts

Thursday, February 21, 2019

Stelara® and Olumiant® Considered Promising by Lupus Expert

Stelara® and Olumiant® Considered Promising by Lupus Expert

"In Healio Rheumatology, Dr. Gregg Silverman, professor of medicine and pathology at NYU School of Medicine, provided an overview of potential lupus therapies in development.  He highlighted ustekinumab (brand name Stelara®) and baricitinib (brand name Olumiant®) as two drugs that look particularly promising.".....
from "The Lupus Research Alliance Research"

Saturday, February 16, 2019

Saturday's Copy of My News Paper! "Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"

"Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®"

All aspects of autoimmune/chronic pain illnesses, fighting to survive & grow past them, as I now stand alone to disallow these to get me down.

The latest in health news from pain, RA, Lupus, Heart disease, and all types of other Autoimmune Illnesses... along with other diseases, syndrome's and more. Sign UP on the link to get your copy online daily!

Thursday, July 12, 2018

Weather, Chronic Pain, Pain Pain and MORE PAIN!

Any and everyone of us here, there and yonder, knows how much the "weather" can effect chronic pain. Other illnesses such as Lupus, RA, Osteoarthritis, Joint replacements, cervical spine surgeries and problems, and many more illnesses are "effected" by weather.

Oddly enough, it was not that many years ago, that I would tell my doctor(s), not that long ago, ONE doctor saw you for just about everything.... that THE WEATHER MADE MY MIGRAINES WORSE! Back then, and as I said NOT that long ago, they would look at me like I was nuts, bonkers, and just needed some reason to "complain", go the the Emergency room for the dreaded Migraines that plagued me from the time I was about 17 years old, until I then began having "Lupus Migraines" about 10 years ago.

Lupus Migraines, as I call them are an entire different "ball game" from regular Migraines. Used to pain medication worked for the other migraines. Even though I had to fight tooth and nail to get it often times, my severe headache, nausea, the grogginess, the feeling of wishing you could remove your head from your body was horrid. Yet pain medications handled the problem, most of the time.

Then when I began having Lupus Migraines, no amount of "regular pain medications" in the world will do a thing for them. I must have a huge injection of corticosteroid, and then 10 to 14 days of Prednisone, the "step down" dose, in order to get rid of that type of Migraine.

Fortunately, getting that help is easier than having to go in for any type of narcotic pain medication. Yet, I still have to have those also, for the other "many chronic daily pains"I dread, must still have my pain pump, and I have pills for "break through" pains, especially during the times when the weather acts nuts, causing it to reek havoc with my entire body. I "had the surgeries" to help rid me of the other pain, from the joints that have just disintegrated over the years. I tried to tell doctors way back in my twenties, that I had "genetic arthritis". Again, although not that many years ago, they just didn't want to accept the fact that "someone as young as I was" could have that bad of joints. Yet, it was true. I tore cartilage out of my knee at 15. But, by the time I was 21 it needed surgery again. Then the other knee, my elbows, my shoulders, all began giving me problems. I had them injected more times than I can count.

After the many, many tests, scans, injections, medications, even was hospitalized for a few days to try a medication that was "dangerous" to my heart, and it didn't do one thing for the headaches.

After having several more joint surgeries by the time I was 35, I began getting through to some doctors, that these problems were not all imaginary, but were truly issues that I probably was born with. I even had double hernia surgery about 4 years ago! The surgeon told me I was probably "born" with those areas "weak" like some infant girls are, and after years of walking, lifting, bending, picking up something heavy and so on, that they finally became fully herniated, and had to be repaired. Even that was a nightmare. I could Feel them, I could SEE them, yet 3 doctors and even a sonogram didn't pick them up. I finally went to a surgeon I trusted and HE could feel and see them. HE knew what to look for, and he also was well aware of some women, were born with those spots weakened. And some went on to develop hernia's that needed repair.

Usually you don't catch me "lying around" or doing basically nothing. I fully believe that laying around, even when you feel like "hammered hell" can just cause you to feel worse, hurt worse, and give you a lack of energy, lack of muscles, an you question, which is better? Am I harming myself worse, by getting up and doing  things? Or am I better off "working through the stiffness, pain, swelling, and all of the side effects that go along with these illnesses?   

What sucks is that although I usually DO feel better up and moving, even if it is slowly, it still at times takes all the energy and will power I can muster these days.  I have people who stare at me when I park in the handicapped place. It's still hard to have "invisible illnesses". As much as is out there about so many of us suffering, with these horrid diseases, yet there are still "uneducated", "mean", selfish people that want to make fun of, or cause us more grief that we already deal with on any given day. Just sitting here trying to type had caused my wrists, my upper back, my hips, all to hurt like hell.

So, me now trying to sit down and write a 3rd book, when I need to spend HOURS typing it out, almost seems as if it will never happen.                                                                                                                                                   

Friday, March 10, 2017


Taking your own medical knowledge about yourself in your own hands can save you money, time, hassle, and maybe even your LIFE!

Here is my own story:

I think we should FIRE all of the "meteorologists" when it comes to their weather "forecasts"! For two days, the forecast was thunderstorms both yesterday and today... 70 to 80% chance! I had a doctors appt in Dallas yesterday afternoon, and I was concerned since I HAD to go to this one, that I would be in bad weather with BAD drivers, when it comes to Dallas traffic... well, then they forecast that the "thunderstorms" would hold off till "early Friday morning" thus although it looked horrible in the skies over Dallas yesterday, no rain etc really happened. Then I get up this morning to NO thunderstorms in the night, but HIGH HUMIDITY THAT FEELS LIKE A SAUNA OUTSIDE ALREADY! My lawn looks as if we had 4 inches of rain everything is so wet from the humidity! Now today the chances of thunderstorms is just about gone, and a small % of rain maybe. Well, I could have told them days ago, we would NOT have thunderstorms, but we WOULD HAVE HORRIBLE HUMIDITY, along with the Barometric pressure being nuts! MANY of us with "joint problems, back problems, neck, have had joint replacements, have arthritis, and RA, or any type of chronic pain problem, could have gave a better forecast from the way our bodies "feel" than they can watching their radars! LOL!

 I spoke with 3 ladies at my doctors office yesterday, and all 3 said the same thing just about I did about the weather, and how it effects them. Then, I was in for my pain pump to be refilled. So, I go in and he was running about on time, which I was happy about, because my appt was at 2:30PM, and I wanted out of Dallas hopefully BEFORE rush hour... so he finishes up, and he upped my pump and upped me to 5 boluses a day rather than 4 since the hip issues, have caused me to have to delay my neck surgery, back surgery etc... plus now with the hip being repaired and not replaced, (which I wonder why he did not just replace it. Due to me having severe osteoporosis, the "normal" would be to replace it. Now I have a very high chance of having to have it replaced down the road simply because of the RA, Lupus and Osteoporosis) but anyway, now I have more pain up and down that leg, mostly related to my lower lumbar and sacral spine issues that were tweaked, along with my ankle, and my neck when I fell. I did not have that much problem with my back and neck, and the ankle until after the hip was better, then the others began to show themselves. Because I was in so much horrid pain with the fractures of my hip, the others were not as "painful" at the time. Now with the hip repaired, the ankle, my neck and lower back pain have become worse. 

Anyway, he finishes refilling it, and does his thing with the wireless device that "talks" to the pump, but he told me my next "refill date was like in October"! I said that cannot be right! With upping my meds there is no way I would go that many months before needing a refill. So, as he was walking out of the room, I used my own device that "reads" the pump, gives me the information and also allows me to give myself the boluses when they are due... and he had done my "bolus" amount wrong again. It should be 1.15 now for 5 times a day... but he put in .1150 which is a HUGE DIFFERENCE FROM 1.115! Thus the difference... So, I stepped in the hallway and was asking the nurse to have him come back, that I thought there was a problem, and sure enough... he put the decimal in the wrong position. Now my next refill is on June 20th or something like that in June! Which MAKES SENSE! LOL! So, just another NOTE for each of you/. DO NOT BE FRIGHTENED TO QUESTION YOUR DOCTORS OR PHARMACISTS, NURSES ETC... if you FEEL THEIR IS A MISTAKE OR SOMETHING WRONG, SAY SO! It can save you lots of hassle, or may even save your life! Don't feel those like doctors are "God" because they are humans, they do make mistakes... especially with a high number of patients they see now, and all they have to contend with, STOP and speak UP if you feel something is NOT RIGHT!!!!!

Thursday, June 23, 2016

Wasp Sting turning to "infection", dealing with "overload" of paperwork after Mom's passing away, my own health issues, ankles still not well & so much more....

I've been "knee-deep" in things to do... I feel like I am s slow as a turtle these days. I've just now began to realize how much needs o be handled now, from the house, to car, and paperwork. I thought my hands were overfull just taking care of Mom while she was here, but I think I am on more "overload" than I was just a few weeks ago. My "to-do"list gets longer each day, and my "energy" and ability to "get er done" seems to be somewhere lost between the rock and a hard spot... 

Anyway, I am around, just involved in trying to get everything taken care of, and trying to keep this house half way clean. and the lawn needs to be mowed and it appears my neighbor may be gone on vacation or something. I've not seen him in over a week, and I noticed they had all of their blinds down... and his car has not moved in a few days either, so when it is as tall as it is now, plus with me STILL REELING from whatever the hell is going on with me, I cannot stand the sun to even for a moment to be on my skin... I can't really "explain" it, but after all of the burning, itching so severe it almost drove me nuts, hurting, swelling mess with the Wasp stinging me then the stinger in my arms for about 24 hours, before I realized that is what was in the little hole in my arm. But as I "tried" not to scratch it, but it looks like either I have had the "shingles" just looking at the forearm all over, and my skin almost appears as if the 1st or 2nd layer of skin was "burned off"... it is very strange... and most of it I believe is where I was rubbing it, or trying to rub like a soft cloth over it, anything due to that burning and itching... so now I do wonder if this was all the sting, OR did it turn into shingles? 

I have had now this is the 3rd time, a rash that appears almost like shingles. The others were not as bad, but they also burned and itched like crazy. So, between that, and my ankles are still not the best. My right one swells up still a great deal, if I am up and on the move... but right now I don't have time again to stay off my feet and get back on the sofa, then I feel like I really am falling behind. There is something else that I wanted to share, and I hope it does not "weird" anyone out. It could be this happens, for we are definitely "creatures of habit"... but about a week ago, I began to have these s"instant" thoughts, Gosh, I need to "call Mom", or I need to go over and check on her... it has happened now several times, sometimes more than once, if I think of something that she may have wanted to know etc... so I know it kind of hit me as "strange"... yet like anything we repeat in our daily lives, it tends to become "automatic" in life. If we get the mail everyday at 4PM, then even on a holiday, many of us probably go and look for our mail... and then find it comical that it is a "holiday" dummy.... I can say, although as "strange" as it feels, it's not a "bad" kind of strange, it is just something that I've never experienced before... 

That house is beginning to look much better inside. Gosh, talk about a "pack rat"... now I know where ALL OF THOSE PRESENTS FOR BIRTHDAY'S, MOTHER'S DAY, XMAS etc went! She has packed, packed and repacked stuff over and over again... so there were several things over there that belonged to my Granny Svehlak, and much of that is crystal bowls and so forth. So, I know there will be some things that will remain, to be passed down, etc... to my son and daughter, and my Grandkids... many "keepsakes" so just like myself, Granny always made Homemade Cookies, and she had a special jar that I loved all my life, and when she passed away, I asked if I could have it, and I have it sitting in my stands that have glass doors on them, with some other things from the family etc... Then, I am still having heck with being nauseated and not feeling "great"... I am sure the heat, plus the Lupus Flare, plus the antibiotics, and all of the stress from the past several weeks, really months, is catching up to me. My neighbor did say that there is a "stomach virus" going around here in town, and hell that is the last thing I need! As I continue this "journey" through paperwork, redoing floors, painting, and making decisions on many things, your thoughts, well wishes and prayers are definitely still needed... 

I "thought" I would almost be at the place to go ahead with my neck surgery, but as it is right now, I have to get over everything else first... plus that stupid "motion disorder" and it also can cause these "audible noises" where I think I "hear" someone with the "news" on television, or certain things just "set off" this strange mess. When it 1st happened just after moving back to TX, I was terrified... but myself, my Mom, my Granny and hers was really bad, and my daughter all have it.... it is a type of vertigo, and of course that effects the inner most ear, so when the "crystals" form, then you can have all types of motion sickness, and like me, it is like I can hear "Channel 5 News" or something off in the background... I've been through all types of tests, because I also continue to have double vision. If I don't have my glasses on (and it is over due time for a new script I think) which have the special "prism" in them, and it "deters" the double vision. Anyway, here is a bit of an update... I feel I need to be moving a million miles an hour (my brain is), but my body is just not cooperating... Hugs to all and again I appreciate your thoughts, well wishes and prayers.... Rhia

Pics of my Granny and Grandfather (my Mom's parents) then a pic of ALL of my Granny's sisters, and cousins, and all of the huge family. Abs as promised, the "Ye Old Inn" matchbooks like brand new, plus I "think" the sale and pepper shakers may have cam from there... I believe it was a "give-a-way" of something ...then the lamb and the diaper pin! The lamb was given to me BEFORE I was born! And I have not seen a diaper pin in ages... do they even make cloth diapers anymore and diaper pins???

Sunday, April 10, 2016

Dealing With More than you Want to When An Elderly Parent is getting more "ill" by the day with Dementia and/or Alzheimer's

Before I begin other things I must get done today, I wanted to get an update on Mom here. Things are just not looking good. I was there everyday I think this past week again, but maybe Wednesday. The days run together for me now, and I seem to also almost be "lost"... I was there for a brief time on Friday, and noticed she was out of things such as paper towels, Kleenex, probably low on toliet paper, since she had a roll of it in the kitchen for "paper towels"... and she had drank two, 2 liter Sprite Zero and Diet Dr. Pepper's and a 1 liter of diet Pepsi... and the strange thing is Mother used to never drink those. She would keep one for me when I came over, and I had really stopped drinking them a while ago, but I would have a glass while I visited her. She also was nearly out of the Ensure drinks... so I never said anything, but yesterday, I needed to finish mowing as much of my lawn as I could before it rained, so I got that done, and then dressed and went to the market, and picked up a couple of boxes of Kleenex, some double rolls of toliet paper and a 6 roll package of paper towels. 

Plus more Diet Drinks, Ensure, and a couple of cans of soup I knew she would eat. I was not sure what else she needed but I knew to get those, and then get a list. Well, I got there and she was in bed, and this was at like 1:30 in the afternoon yesterday... she has knew I was supposed to come, so the door was unlocked which was a miracle... so I went in, put everything away, and she finally got up and came in the kitchen. I had also picked up medications I knew were ready, and she is complaining of itching so I bought some Benadryl, because she never will get any, and I always have to take some of mine over there. So, she was hurting, and itching (and I don't think it is the pain meds causing the itching, I think hers is just more dry skin because she will NOT put lotion or anything on her skin, and it is just like scales it is so dry)... in fact I need to buy some lotion because the woman from home health care said they would make sure they would put it on her skin when they were there. Well, we sat down, and I told her what I bought and told her to get a list ready and I would pick up more items she needed, but it may be Monday, since I knew the weather may be lousy today. 

And it is, cool, windy and rainy outside today, thank goodness I mowed... which even with the new cordless mower almost killed me... I am only going to be able to mow some, and will have to have someone mow also and help me in between. I will not be able to especially once I have my neck surgery, which I DID CANCEL AGAIN... until the first week in May... right now until I get every else set up for her, there is no way I can have neck surgery. She is so far gone in her mind, she I do not think even comprehends the difficulty this surgery means for me... I really will probably be in a neck brace at least 6 weeks, and this surgery, due to having to remove all that he put in the 1st one in 2012, means this one will probably be more advanced, and lots more hardship that will take a lot longer to heal.

 I noticed he is ordering some type of bone "stimulator" for bone growth... not sure if he means internal or external, but he must think due to my issues with another severe compression, that I may have issues with the osteoporosis causing me to not heal as quickly, which if he has to remove what has grown in place now for 4 years that would make sense... so I felt I needed to wait to see if I can get some help myself here at home. I may need him to write a script for me to have some temporary home assistance come in, and also have my girl that does the dog sitting Samantha to come in and help me with the dogs, feeding them, changing their paper etc... because I will not be able to bend forward etc for weeks after surgery... so a "caretaker" may need to be in place for me also for at least two weeks after surgery.... anyway, I FOUND HER SS CARD! I do not know where it was, but it 'suddenly" appeared in her purse after I looked and looked for two days for it... and it was there, but NOT her Medicare card or the insurance card, which I already have the insurance card, and the Medicare Card is on its way... but then she hands me a "bill" that I had not seen, and it was for one of her credit cards she uses to pay bills, buy groceries etc for the month, and then pays it off when it comes in...well she must have gotten it in a couple of weeks ago, because it was due this coming MONDAY!

 So, fortunately, I went into bill pay and got it set up so it will pay on Monday, thank goodness so it is not late... other than that I may have not gotten it in... SO I SET IT UP to come to me via email and I will pay it electronically. That was just about the only bill left that is not set up to either email me so I can pay it, OR pay electronically without her getting the bill... and now there is one more, that I will set up also, because she cannot recall even when that came in or she did not even realize it was a bill.... I watched her "fiddle" around with a pen, scissors, this little box from a "pie" like you get an individual pie from like Wally World that is already baked, and a brush, a nail file, a mirror, for like 45 minutes while we talked... they sit on this little what used to be a lamp stand and magazine rack all in one, but the lamp has been gone for years and it is so old and almost ready to fall apart. It needs to be thrown away, and something a bit more sturdy put there, but I tried to hand her a plastic container I brought over there to put pens, paper, scissors, etc in, all together, so they are not just scattered loose on this table... BUT I could not make her understand, and she just kept putting them off, on, moving them, etc... and I never did figure out what the heck she was trying to do with it all... but she would pick it up, look at it, and then lay it back down... I do not think she "knew" what any of it was for honestly...

What made it worse though, is that she had some cards there, most of them old business cards maybe from the bank, people no longer even there, and she kept asking me if she could throw them away, and I told her yes... then she came to the two cards from the Casino's, our new one from Winstar, they just gave out new cards when we were there gosh just a couple of months ago, and then one from the other Casino in OK.. and she looked at me, and said I am cutting these up, and I said MOM, those are our card for the Casino's! You don't want to get rid of those, and she looked up and said" I may as well, I have no intentions of being able to ever go back again"..... 

I was floored... that is the ONLY THING MOM EVEN REALLY ENJOYED! Us having Free rooms, and sometimes free meals, and we would go usually about every 3 months, most of the time now spend the night if I did all of the driving, and she was always excited about getting out and getting to go... Now, my fears of what I suspected about a month ago come to reality... MOM IS GIVING UP! In her mind, she feels she will no longer be "able" or even "want to" get out and even go to the Casino again... the other day when the home health nurse was there, we were talking about how we enjoyed that so much, and Mom looked up at the woman and said I just want you to be able to give my daughter enough "rest' by helping me out so "she" can go to the Casino... she feels she can't leave me alone long enough right now to go, so when you have your schedule in place, she can finally get to go back and enjoy it... and the woman looked at her and said well Ms. Steele, we can get you up and going and you can go again and enjoy it with her.. and Mom said, Nope, I won't be going back again... 

I just am not able physically or mentally.... I so wanted to cry, to scream at her MOM, DO NOT SAY THAT! YOU CAN GO, YOU JUST HAVE TO WANT TO FEEL BETTER, AND HELP YOURSELF BY EATING RIGHT, AND TAKING YOUR MEDICATIONS, AND HELPING YOURSELF GET STRONGER AGAIN! But, I knew no matter what I said, nothing would "change" what she thinks and feels... I am having to come to deal with Mom will never "come here and live in the new room we wanted to build on for her".... she has in her mind decided she does NOT want to fight, to be stronger, she will NOT eat better or healthier, she will NOT help herself get stronger... she never goes outside, in fact unless I go there, she keeps the blinds closed now, she will not open up the front door anymore. she stays locked up in the dark all day, either just sitting in that chair, or laying in the bed... I got the curtain rods up and put her curtains back up in the living room, and got the new mini blind up in her bedroom finally... and fixed the front door knob, threw away ALL of those little dangerous throw rugs, that were a trip and fall hazard... 

but even with the new microwave, as simple as it is, I have had to "bake" the potatoes for her... and I am in a state of "shock" that she has reached a place that she is giving up... she is losing more weight, she will not eat anything "decent" or nutritious... she just is "refusing" to get better... and no amount of me encouraging her, or trying to reason with her at this point does any good.... I just have to try and "love her" and get her the help I can, and do what I can, to my best ability... but at this rate things are deteriorating fast... and frankly it scares the hell out of me... but I also know from my experience with my own Dad, and my Grandparents, and what my friend Lisa Lisman Walker told me at lunch the other day and what I already know, I cannot "change" her mind.... it is what it just is.... Rhia

Thursday, March 3, 2016

PLEASE JOIN ME in My DAILY NEWSPAPER "All Things Autoimmune"! News you Can Use for all types of health issues... and more...


Autoimmune Arthritic Systemic Life Daily – Rhia

Please join my Daily Newspaper that can give you much insight into the latest information of Autoimmune, RA, Lupus, Sjogren's. Chronic Pain, FM and many more health issues, from the latest news, medications, and information YOU can use! I am currently working to really "update" and make it "customized" for YOU, my audience! Thank you, Rhia Steele "All things Autoimmune"

Wednesday, November 18, 2015

Winter Weather and the Effects (Negative) on Bones, Joints, Pain, and Chronic Pain - Holidays, stress, and coping when Chronic Pain andor Illness Abound

Morning All! I thank each of you for "sticking" around, even though I have been somewhat absent over the past several days. I am still dealing with the "wounds" on both thighs, (abscesses) and finally see a "wound care specialist" tomorrow on Thursday. It means a drive to Dallas, but thankfully the weather has turned around, and we are supposed to have a few sunny days! I certainly hope so! The cold, damp, rainy weather does more to some than dampen their spirits, it can cause any type of bone, joint, arthritic, or chronic pain problem to escalate horrifically.

I have been dealing with of course NOT having my internal pain pump, which is already bad enough. Even with strong pain medication orally, they can't compete with the medication given from the pump. Then you add on top of that, all of the pain, stiffness and swelling from the Lupus, RA, other arthritic issues, and joint problems, and believe me, it causes a world of hurt, over and above what pain I already have.

I've read several articles lately on chronic pain. For the most part, I've been "aware" of just how badly weather has an effect on pain since I was 17 years old. Long before doctors would say "yes" definitely. I first noticed it with migraines. I was plagued with those for all of my adult life. In fact, they were much worse, led to me losing several jobs, because at the time there was no real answer for medications, for even why I had them, and facts that we now know about all types of migraines, were just not around back then. I also began to have joint problems, that even needed surgery by the time I was 21. After a severe knee injury that led to me having extensive knee surgery at the age of 15, and then another surgery on that knee when I was 21, from there I was also plagued with many problems with joints. I had several arthroscopic joint surgeries well before I was diagnosed with RA and Lupus.

I had an elbow, shoulder, and then another shoulder, wrist, and really needed another elbow surgery by the time I was 40. From there both knees has surgery several times, before finally having both of them replaced in 2007. In fact in 2007, that one year I went through 7 or 8 surgeries, related all to joints. Even the right shoulder, finally led to a total "reverse" shoulder surgery in 2011, and then cervical neck surgery, plus I face a lumbar/sacral surgery, that has been put off by other health problems.

But, I vividly remember how much worse my migraines, and then later joints would hurt when we had a huge weather change. I was in my doctors office many more times, or even in the emergency room with migraines when the weather "acted out".... a high humidity, very stormy weather, a drastic change from cold to hot, or hot to cold, sent me straight into more pain than I could deal with. At that time, there was little "medical proof" about the effects weather had on these types of health problems, but I cannot recall how many conversations I had with all of my doctors how about the weather had a dramatic effect on the pain level I would have.

Now, after many years, it has been proven with studies that it certainly does have a dramatic effect on the body, especially chronic pain and/or chronic illnesses. It is no different than when I had my 1st knee replacement, there are times, that "knee" hurts so badly, I would swear I never had surgery yet on it... but just like those who lose a limb and have "phantom limb pain" so is also true with those who have joint replacements. That is true for me with both knees, and my shoulder. There are times, especially during severe weather, that they hurt as they did before the replacements.

Holidays are upon us, and with the hundreds of thousands of us that suffer each and every day from some type of chronic illness, and/or chronic pain, holidays can prove to have a "mixed blessing"... when you have an illness such as an autoimmune illness, that already causes fatigue, and all types of symptoms, having a busy holiday schedule can definitely contribute to feeling even more fatigued, more exhausted, and the added stress often leads many of us to having bad flares, and even being hospitalized.

Holidays usually involve family. Like myself, with some of my family hours and hours away, that is sometimes the only time I get to see my daughter, and her family. So, we spend a great deal more time getting ready for family that is far off, or doing holiday baking, parties, and putting up decorations, planning meals, running and doing shopping, and all of the very things that can make holidays wonderful, but also make chronic illnesses and pain horrible in the process. We tend to not sleep as well, not eat as well, not take care of ourselves as well, and do way too many hours of overdoing it, thus leading to us feeling even worse than usual.

But, how do we find a "balance" when such times are upon us? That is a very difficult and almost at times impossible task... you can defer making a huge dinner, to going out to eat, you can order presents online, rather than running around 4 cities to find the right gifts. If you have a huge home, or are expecting a group to stay several days, rather than trying to do all of the cleaning and so forth, you could hire someone, or recruit others to help with those things. Or you could offer to help with a hotel room, or ask family well ahead of time if they would consider spending part of the time at your home, and then a day or two in a hotel. As difficult as that may seem, sometimes it is best for you and them. If you are too exhausted and overwrought in "taking care" of family and friends, then you are not able to "be there" in spirit and health to visit and enjoy the time together. With my home being so small, I just simply do not have the space for my 3 Grandkids, my daughter and her husband. When the kids were small they stayed a couple of times. But, after the kids getting older, and needing more space, a 2nd bathroom, and so on, they decided staying in a local motel here in our smI've made some adjustmall town was so much simpler for them and everyone. I realize that some may not have the finances to allow that, and other plans must be made. Yet, if you can at least take a portion of that off your shoulders, all can enjoy the time much better usually.

I know I have cooked many, many holiday dinners, all myself. I used to decorate every room, clean every speck of the home myself, and have all in perfection. But, as I began to have health problems, my "body" just became rivaled with fatigue, pain, and problems that do not allow me to do nearly as much as I used to. It is very difficult to contend with, and I surely know the guilt I feel even till this day about not being able to do what I used to... but you must accept those facts, and find new ways to enjoy family, take the burden off of everyone, so stress does not plague your enjoyment together.

I've made some "adjustments" already for the holidays for this year. Rather than try to get out of huge tree, and pull out all of the boxes in the attic with decorations, I "settled" for a smaller tree, that I put on my beautiful round table in the living room. I had many of my special ornaments and decorations in my camphor wood chest, so they were easy to get to. I took all of those out, and had plenty for the tree, plus used some of the other things to decorate the rest of the living room, as well as some in my office. No, it is not the huge tree I loved so much. But, it is a 4 foot tree. By the time I got the lights, and all of the special ornaments on it, and surrounded it by a few treasures around the house, it is simply beautiful. Plus this is the 1st time I can remember getting my tree up well before December 1st. I usually wait till the first week of December to put it up. But, I went ahead and bought the tree, and since I had it, I went ahead and spent a bit of time a couple of days finding my other stuff, and then decided to go ahead and put it all together. In fact, I just found my crystal candle holders, and got them all out and cleaned them, so I could get the candles in them with my candle rings. All of it things I had around the house. I need to buy a few more tapered candles, but I had 4, so that works until I am out sometimes later today to pick up a few more. Anyway, I have enjoyed the decorating this year almost more than some others. For one, because it is "different" but in a good way. For 2 I have not felt pressured to get it done, and have just taken my time, finding things to use from around my home. Even the tree skirt. I had some "quilted" white cotton, a piece I had in my sewing items. It is just big enough to make a perfect "tree skirt" and looks like snow, with the quilting and being white. So, I also have not spent a fortune to decorate. I did buy the new smaller tree, but other than that, I did buy a set of smaller lights yet even they were only like $2.00 at one of the local dollar stores, so I did not have to go into debt to have a wonderful tree and decor for myself and Bub's.

We are waiting to get our wonderful Christmas "miracle"! My hopes are that by Christmas we have a new fur-baby for our present this year! It seems perfect since Tazz, my Pug, who passed away a couple of months ago, was a Christmas present back in Seattle! She would be turning about 14 years old this month, around this time in fact! IT seems like yesterday we went to pick her out. I will never forget how she "bounced" up on the sofa and came running to me! There were still several brothers and sisters to pick from, but they put her up on the sofa, and she ran straight to my arms! I knew that instant she was my special gift! In fact, she is in her little locked cedar chest, with a prominent place under my Christmas tree right now. She shall always be my "greatest gift" as far as human gifts go... she lit up the room every time I walked in. But, Bub's and I have I think bonded even more since she passed away. We always had a "bond" but after both of us suffering through the loss of her, we seemed to grow even closer to one another. He is even more protective of me than he was, and he was always very watchful over me. So, I know both of us will be so thrilled to have a new addition to our home. It has not quite been "home" without Tazzy. Even though no other pup will ever take her place in my heart, I know she is happy, playing and will forevermore be a pup, and someday she will see me and run into my arms again, just like the very 1st time we saw each other! I painted her toenails that morning she passed away. The evening I picked her out, the lady painted a back toenail red, so I would know she was mine. So, I sent her to heaven with red toenails. I will know her without that, but I shall truly be so warmed to the core to see her run up and jump into my arms someday when I join her and my family members and friends in heaven.

Between the illnesses, the pain pump going out, the abscesses on each thigh, losing the trial from the accident, being "single" again without ever even expecting it, losing Tazzy so suddenly within 24 hours as I did, and trying to deal with Mom and her also having health issues, it seems 2015 has been another one of those very, very extremely tough years. I hope and pray that faith will lead me and my family, into a new, less stressed, better health time in 2016!

May somehow our nation and our world find peace and harmony!

And may each of us know and understand the true meaning of the Spirit of the Holiday Season...

With my love, respect, and may you find peace in your heart, and a well health filled 2016 also!

Monday, September 14, 2015

IFAA Post and an article about the "Cost of Chronic Pain"

Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....

Thursday, July 30, 2015

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

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

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

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

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

Tuesday, May 12, 2015

Sjogrens' Syndrome Foundation - Walk A Bouts for May the Annual Awareness Month

I was trying to put a message on Twitter but of course stupid me, was not thinking, so This horrid disease like a thief in the middle of the night stole ALL of my TEETH within a year!!~ Not only has it taken my teeth and created a HUGE expense for "special dentures" but it truly messed with my own self-esteem! Even though I have the dentures, I must take them out completely at night every night, and sometimes at home, I don't put them in for several hours. When I look in the mirror at myself with them not in, I appear to be a 90 year old woman with all the wrinkles, no lips, and the "sunk in" way my face looks. that are not there unless the dentures are in. So, I attest to this disease needing MORE research, Actually, there is not ONE medication for "Sjogren's". There are a couple of meds that may help "somewhat" but neither of them really work very well. I take on of them daily "pilocarpine" and I truly don't see much of a difference. ... Like ALL autoimmune illnesses, they cause so very much more "damage" to the body, that often we may not realize until, like myself, my teeth began to fall out, from the gum line... even taking medication using everything I could for cry mouth, chewing sugar free gum and always sipping on something - so there is not a thing I could have done or not done to keep this from happening.

Sunday, April 26, 2015

Oh MY!!! I almost missed it!!! I had my days Mixed up.... #HAWMC - WEGO Health Writer's Challenge

This has not and never will be an easy thing to do. "We" and I am speaking us that are chronically ill and/or having Chronic Pain. All too often others that mean well, can sometimes really say or do some very hurtful things to us. Some, they may mean it to be that way. Yet, often family and friends, really don't want to make us feel badly, yet they do.

I know my Mom will come up with some "hair brained" idea from "television". She will "partially hear or see" something that she thinks may just be the answer to our prayers for me to "be well". A I have tried to tell her hundreds of times, those "gimmicks" are just that. They are trying to get your money, and the majority of the time, whatever it is, would not work.

So, I have gotten to the place, that rather than "appease" her or anyone with these solutions, I inindate them with the "truth". I have taken the Arthritis Magazines to her. Health magazines that cover what is really going on. I also print things from online. I have taken many examples of the "truth" behind my illnesses, my pain, and why I do or don't do some things. What she and others do is try to tell me "what I should or should not do"... I guess that bothers me more than anything.

NO, maybe I should not have been on the chair today putting up a new mini blind. BUT, if I don't, who will? There is NO ONE I can call at the drop of a hat, that can come over and resolve my daily house stuff, that I have to do. My coffee pot went out this morning. I also needed a different size mini blind. Then I saw the one in the next window was also broken, thus I needed two of them. Did I really "feel" like going back to "Wally World" this morning to get those things? No, I wanted to be here, home and writing. But, once I saw that I needed those, plus the curtains in my bedroom needed laundering, so down they come, and into the washer and dryer. I realize that there are things I can't do. I know about how "far" I can push "me" before I am doing something "dangerous". I have osteoporosis, and it is in the "severe" category. So, climbing on a chair hanging blinds, and getting curtains down to launder, then putting them back up is not the smartest thing in the world to do. But, again I HAVE TO! It is up to me. This is our home, Jim is still not able to do much of any of that at all, whatsoever. Thus, I do what I can.

So, when I go over to someone's house, or see them in the store, and they ask me what I've been doing. I tell them. I know one day a lady I know caught me in a "not so great mood" at a store... She began going on and on, about her toe was hurting, and she was upset because her nail lady could not get to her, and she didn't know what she was going to wear out dancing that night. So, I looked right at her and said, "Well, at least YOU CAN HAVE YOUR NAILS DONE, and you can I am so sure color your hair today. Besides run over to Beall's, they are having a sale. Maybe you can find a dress you like, or an outfit. Then I told her, at least you get to go out, dancing, to dinner, with friends on the weekends. I sit at home, ill many times, and can't even go to dinner on my wedding anniversary, the 10th one at that. She kind of backed up and looked at me, and then said, "Well, I guess I didn't realize that you and your husband had that many health issues?" Well, she didn't know because she was too busy running her mouth about her world, her life, her job, her kids, blah blah blah... and so on, and never once asked about my life.

So, when I get "that look" using my disabled parking sign, or I ask someone to help me with my groceries to the car, I just stare back and should say, yes I AM ILL - YOU may NOT see it.... yet it is there... I am to the place, if I go into the store, sometimes I don't have makeup on anymore. Maybe I am not dressed to the "nine's" at times. By the time I do what I need to do at home, then have to shower, dry my hair and dress, many of my "spoons" for the day are used up and I need another handful just to make it through the market, and the pharmacy.

So, people that DON'T KNOW, rather than stare, ask me. My life is an open book. I will tell you all about my Lupus, RA, Sjogren's, knee replacements, shoulder replacement, losing ALL of my teeth this past year and have dentures due to Sjogren's. Ask me about the fatigue, the cold sweats at times, the times that I so wished I could just sit down in the middle of the floor and CRY until either the pain stops OR I can't cry any longer..

Before you "cast" a stone.. try to make sure the target is what you think it is. So, yes, if after a round of "high dose 14 day Prednisone", I have a couple of pounds, I can see, so I know others do too. It may take me a month to get off those couple of pounds, but they will come off.

And if I "can't" go out to dinner, or out shopping, or if I decide there is no way, I can do laundry today, then know when I can, I do, and always will.

Friday, January 9, 2015

An Article About Chronic Pain - How Horrible weather can be on those with chronic pain, joint problems, and chronic illnesses that effect joints, bones, and more

Great Article about "chronic pain" especially joint pain and the weather. I know for myself, that like yesterday, the very sudden huge drop in temp - from about 50 to 18 degrees yesterday a.m. sent me into one of the worst days of my life with pain. Ironically we were going to my pain doctor, BUT he was seeing Jim yesterday, not me. I wanted so badly to tell him that I could sit in the floor and scream, I hurt so badly, but I knew the appointment was not "about me", thus he knew by looking at me I was hurting... anyway, I had a headache that is one of the worst I've ever had even from years back with my migraines, and NOTHING would stop it. Believe me I tried everything I could think of. Then my neck was so stiff I could literally NOT turn my head to see over my shoulders while driving. I had to turn my whole body and use mirror. Then my lower back hurt so much, I honestly thought I had kidney stones. And my legs, ankles, feet, wrists, and my thumbs were so terribly bad, I felt they were stiff, and just was not able to move them without horrid pain. Now, the weather I KNOW "in my bones" (no pun intended) has effected me for years and years. Even when I would have migraines in my 20's and 30's the dramatic weather change could bring them on almost every time. No one quite believed me, and then when I began to see my Orthopedic Surgeon and he did all of the joint replacement and surgeries on me, he totally agreed the weather would absolutely effect pain, especially joint pain. Even the "phantom" knee pain I get with my knees, that seems like I never even had them replaced will come on with a vengeance when we experience storms and so forth. So, let not anyone make you think you are crazy, when your pain is worse in weather fluctuations. I think it is definitely so. Yesterday was living proof for me. But, I am also hurting today, so far not quite as badly as yesterday, but I can tell if i were to get up and really start moving around I would be in a world of hurt... which sucks. Because I have to get out today cold, bitter weather or not, and pick up scripts both of us have had filled. The visit with my pain doctor for Jim went well yesterday. Finally someone that will work with him. But of course this is ALL coming out of our pockets, and everyone knows office visits and medications are NOT cheap. I dread picking his up, and then this is my first time having anything filled since I had the new insurance start on the 1st. So, I hope the hell I don't have major issues with United Health and my MAP... I will be so pissed if I start having hell getting meds etc paid for. That is why I dreaded the change from Humana so much and just put it off the last two years. But, more and more of my physicians were dropping Humana, even my PCP, thus I decided to change over to United Health... is it a "Secure Horizons" AARP endorsed Medicare Advantage Plan. This one hopefully will not be too difficult, because I am already established and have been for years with all of my physicians. So, they assured me since I've been on the meds, and have been seeing these doctors for years things should go fairly smoothly with the transition. I will believe it, when I go today and try to pick up the scripts.....

Talking About "Good RX" card for prescriptions....

I can guarantee ALL of you that either do not have insurance for prescriptions, or need an extra amount off of your meds... I have used this twice for Jim's meds since we have NO coverage for him, and the meds even though "generic" are ALL expensive. There is no way we could pay full price on them. Well, I got hold of this URL and found "GoodRX" through a Google search. I can say that it is TOTALLY worth using. You can use it in just about any pharmacy... all of our local pharmacies take it and you get a better discount in some than others. But, you can look up all of the prices at different locations right on their website, so you know just about the cost before you even go to try and have them filled. We have well over 200.00 or possibly more in costs for 4 of his scripts and 3 of them came out to 69.00 rather than 150.00 or more. You can either just pull the coupons or copy of the card online and print it and they will also send you a regular card if you wish and request it. Unlike some of the ones that save you a bit here and there, this one truly so far has been a life saver for us. Between having to fork out the cash for a damned expensive pain doctor in which he has to go MONTHLY... and then medications that even in generic can be out of the bounds of reasons, I have been as pleased as it is possible to be pleased when having to spit out money you really don't have. But, there is not much choice... we either pay for it out of our pockets, or he just does not go, and does not have any meds either... so neither are very good - so you choose the lesser of the both evils, as my doctor has said about prednisone... I can either "take it" and it help with the horrid pain and symptoms of these autoimmune diseases and then know I will also have to contend with the crappy side effects, OR I can NOT take the prednisone and then suffer like hell... so it is the "lesser" of two evils.... anyway, this has been 2 days from mortal hell... actually all week dammit... Mom's phone is out and I've had to put in two work orders, then I took her a cell phone, that of course she has hell using... and I found the problem, it is an almost complete break in a line outside that is weather cracked, and worn almost through... and then they tried to do an "automated" call and ask if she was satisfied with the service... HELL what service???? They had not fixed a thing when I was there yesterday or today yet... anyway, then of course the weather sucks big time here... it is bitter COLD, and going to be several days along with the possibility of sleet etc... not a good thing for no driving idiots here... then Jim doctors appt and the meds thing... THEN I GO to MY pharmacy (this is after calling and emailing) them my new insurance information. Then I even TOOK THE CARD BY YESTERDAY! and they said they would "rerun" everything through. I go in today expecting issues for some reason and of course 3 SCRIPTS NOT RAN THROUGH THE NEW INSURANCE! SO, THEY are trying to collect 44.00!!! rather than 7.30!!! So, I had to wait for them to do what I had already told them about 4 times in the past 2 days! I get home and another script I had called in this morning, they STILL tried after I had been there TO RUN IT through the old insurance!!! OMG!!! I was livid.... and then I had to run errands, pick up stuff as far as for a couple of days just in case the weather gets really ugly.... and I ruined my entire day, almost yesterday and today... running around like a chicken with its head cut off with errands and crap. So, it got me off track with my writing and ALL I WANTED to accomplish over this past couple of days. I swear if anything tries to get in my way this weekend to keep me from doing WHAT I intend on doing, I am going to scream very loudly... plus since the weather changed I hurt so badly it is a scale WAY OVER 10!!! More like 17 .... everything on me hurts... I have actually thought that I was coming down with something else... the pain is unbearable even with my meds.... it sucks and now honestly, I am thinking the Orencia is NOT helping the RA at all... I hate to say that, but I think I am going to have to face the fact, that it may not be "the one" for me... and I hate that... the very last thing I want to do is try yet another biologic! Every time it is like starting all over again.... and it sucks... and many of you know that....

Sunday, November 2, 2014

Medicare Advantage Plans, Medicare, Supplements, & Health Insurance

I realize many of us are probably on disability of some kind. Those of us that have been chronically ill, for way too many years, have finally had to "give up" some awesome jobs, to get only a "fraction" of the benefits and salaries we once had.

Yet, chronic illness, whether autoimmune, CFS, FM or many other diseases, syndromes and illnesses, brought many of us to the place of decision... to give up a job and go on disability.

Well, in some states and TX is ONE of them, if you are UNDER the age of 62 I believe it is, and you have Medicare, they would not allow you to just purchase a "Medicare" Supplement. You HAVE TO get a Medicare Advantage Plan. Of which, there are not be a very few of these types of plans. With the "hatching" of Obama's health care plans, most of which Congress, as I understand it, you WILL BE able to purchase a "Medicare Supplement" if you so choose. The point of that is though, they are MORE EXPENSIVE than getting into a Medicare Advantage Plan. Some of the Advantage Plans do not even charge ANY Premiums. But, there are some doctors who may not take them, or you may have to get some PA's (Pre-authorizations) by your physician on certain items, or possibly you may have a medication, that may require "step therapy", where you try certain meds first before you go to one the doctor recommends for you. Although all of that is going on, I do know several bills have already went through Congress to change those issues.

Well, I've had Humana - their Medicare Advantage Plan now for about 5 years and for the first several years I was quite satisfied. Them seemed to have been over the past 3 years getting slower and slower to process claims, making doctors wait to get paid, which of course is going over about like a lead balloon. So, like my own PCP, who had now decided as of Jan 2015 to STOP taking my Humana Plan! Well, this is the doctor WHO FIRST DIAGNOSED MY LUPUS! Plus he is the one who takes care of my Lupus, taking care of my flares, and medications. Even though we have been with him from almost Day 1 he was my physician, and I am trying to get him "Grandfather" me in due to the Lupus situation. Which I know can be done, especially due to the Lupus, because they did it with another physician for me on my pain doctor, who takes care of my pump.

But, when I started checking around, I've found out that I maybe doing a smart thing by changing over to the AARP "Sponsored" United Heathcare Medicare Advantage Plan. AFter researching it over about 3 hours yesterday,  I began to see more benefits ALL of my doctors take the Plan, all of my medications are in their database, and say that they take them... it does not cost the 49.00 a month, plus they give you some basic dental and eye coverage and for something like 30.00 or a little more you can get premium dental coverage.... anyway, if any of you have the plan, I would love to hear from you.

I shall post more tomorrow... I am worn out for some odd reason...

So, I think I may join my two pups and my husband on the sofa to watch the rest of the ballgame that is on

(A bit more from Facebook)

Well, if any of your have a Medicare Advantage Plan, and want to share how you feel, please I would love to know. I right now have Humana Gold Choice, and I have found out that MORE of my doctors and my medications will be covered under "United Healthcare Medicare Advantage Plan" for 2015. I spent a couple of hours yesterday checking all of my doctors and my medications through the site, and doctors that are going to "DROP" the Humana MAP in 2015 ARE going to continue with United Healthcare HMO Medicare Advantage Plan... I used to be extremely concerned about "HMO's" when they first appeared on the Horizon. They have a very bad rap to the entire insurance industry as far as health wise. But, now with the Medicare Advantage Plans more doctors in my area and my own personal doctors are covered... where they as I said as dropping Humana. Even the specialist that did my neck and reverse shoulder replacement take the United Healthcare plan, and he had dropped Humana over a year ago, and if I needed to see him I would have had to pay something like 30% or maybe even 40% of the visit charges!!!! So, if any of you have an opinion... likes, dislikes and so forth PLEASE either share here, or message me if you wish, or even email me at or I am thinking about changing both myself and my Mom over to this other one. AND to BOOT Nationwide UPPED my insurance and I just got through getting a new quote, which is over 500.00!!!!! a YEAR cheaper that who I have now... I am so pissed.. they PROMISED ME when I had to get the new car, my monthly premium would only be about 15-20 a month higher... BULL they almost DOUBLED their premium!!! I also found out that since Jim is NOT able to drive at all, and may not be able to for a long, long time if ever. So I DO NOT have to keep him on my policy for now, until he can drive again. Talk about a bunch of money hungry greedy asses... pardon my French! You have to watch your back, front and sides, because they will "stab" you any way they can.... corporate GREED!!!!

Monday, August 4, 2014

"See NEWS" Page for the New Post! Exciting News for All Wanting to Speak To Your Congress Members!


Friday, March 14, 2014

More on the Continuing Saga of "Rhia's Law" If it is going to Happen, It Shall Happen to Rhia!!!

Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happenings in my life"; it is almost impossible to believe myself Yet, I am the one who is and who is going to go through them.

Just one, is insanity! When you decide to "string" them all together, it almost feels like I am writing some fiction novel. Some of the things that have happened, it just seems impossible that any one human could withstand the pressure, stress, and the trauma I've endured. What I am about to include below is just a week or so worth of "happening. Honestly due to the "brain fog" I am just in a place that I can't even type. I find myself misspelling everything, or it is like I can never have my fingers on the right keys. Now this morning, I've lost my "coupons". Yesterday, I went grocery shopping and I had them with me. I remember having them and in fact I thought I had laid them down in one of my reusable bags. I was going to look through them this morning and they are just gone! Alone with the "sales papers" from WalGreens and and CVS, etc! I swear I had left one in the basket and someone really snapped those up. Those coupons, if you really think about it are almost like "money". when you are saving 50 cents, a dollar, 2 or 3 dollars, 25 cent 5, 4, 6 of them. Believe me I've walked out and save 40% on grocery bills. And at WalGreens and CVS, there are times I actual "save" over 50%! I have came in and the total I saved is more than I spent! Anyway, of course, there but it is true and a great tip. With all of our market products going UP, UP, UP and no DOWN in sight, every dime is going to help in one way or the other saved.

Before I copy and paste my latest rant on my own life's mysteries... I have a question for you...
WHY when you go into a DOCTOR'S OFFICE do they ALWAYS ASK YOU, "How are you feeling or doing today? NOW if I were doing "okay" I would probably NOT standing in this office!!!

I know there are times we go in for a "wellness" check, etc.. so we might not be extremely ill. Yet, when they look down on the computer or think back that you have called in that day for a "sick visit" then asking how you are is just is about stupid, as spitting out of the back of a truck going 30 miles an hour down the road!

I've come to have this statement "embedded" in my mind! And it stands so True for Me!

"It's Damned if I DO!!!! "And it 's DAMNED if I don't"

"And Now for the rest of the mess"

I wanted to let all of you know I've received THREE letters back from Senator Cornyn on 3 emails I'e sent him. He has definitely read what I wrote or someone in his "team" answered them, and just make it appear as if the Senator is "listening". He has sent emails in regard to "health care", "the payment doctors are "not getting paid" in regard to especially Medicare issues, and also is addressing more money going for research  & the allocation of funds to  National Institutes of Health and the Centers for Disease Control and Prevention, to try and help with all illnesses especially those of the chronic nature such as Lupus, RA, Diabetes and so forth. I was a bit hesitant to be "thrilled" because he is usually not one of the Senators that I really agree with. But pieces of what he said in each email gave me a bit of hope that there possibly maybe changes of a good nature coming along the pipeline. I think the government in general is seeing that they HAVE to step UP to the plate, pay our "good physicians" properly, and give them incentives to continue to keep their practices open. Without any type of government aid of any kind, whether it be a larger pay from Medicare and Medicare Advantage Plans, or incentives due to being "doctors that are superior" in helping their patients, while paying staff properly, keeping the good nurses on, and yet keeping costs down as much as they can without "harming" patients or those who work for them and need a decent salary, we are doomed! We already have a drastic shortage of MD's, when it comes to Family Doctors, and those who are regular MD's, who are not in the "specialized" business. Without our PCP, (Primary Care Physicians) we would certainly be in huge trouble. And without incentives for those types of physicians to be able to know when they graduate, they can pay off all of their student loans in a reasonable amount of time, be able to pay a staff and have a decent practice without feeling like they must take an over abundance of patients just to survive paying loans off, paying for their practice, a family, the insurance that is so high that goes along with being a physician, and also be able to take people's insurance, including Medicare, Medicare Advantage Plans, and Medicaid... then Doctors will NOT go into a General Practice. Our doctors are "specializing" us right out of the good old days when our physicians did it all. They saw you for a cold and the flu, they delivered babies, they took out gall bladders, they saw you in the ER in the middle of a weekend to sew you up, or to see you in the middle of the night when you were ill.  Those days of doctors are gone. Well, not entirely. Now we are seeing these new types of practices where you "pay" a certain fee a year and you get those types of services. But, usually it is a fee you pay up front each year, and you do not file insurance and so forth. They are more known as a "concierge" type of physician.  Yet, these types of physicians and their type of care does not come "cheap". Those annual fees are extremely expensive, and usually only the more "lucrative type of patient" can afford that type of coverage. So, that still leaves us without our "old fashioned" family physician. It is a huge and looming situation that those of us that are in a "chronic illness" type of situation see the "downfall" of the medical world around us. We cannot get the care we need, We cannot get the proper diagnosis, the medications, the labs and tests, or the proper care of any type, due to the high cost of it all. And even those of us with insurance, Medicare, a Medicare Advantage Plan, Medicaid and so forth are "losing the battle" also, because again doctors are not getting paid by these entities without a fight! Thus, they cannot keep their doors open to their practice without getting paid by those companies. Then they drop the companies and who can afford to pay out of pocket cash for treatments and medications? Have you looked lately at one of your print outs from your prescriptions when you pick it up from your pharmacy's? Like Wal-Greens, WM, CVS and so forth. I look at what mine say as far as what I "paid" versus what it would have cost me without my "insurance" paying. Medications that are even generic with costs of  $500.00. $750.00, $2,500.00 for a MONTH'S supply!  There is absolutely NO WAY those of us chronically ill or just ill for a flu and so forth can afford to pay those kinds of charges out of pocket for medications! It is insanity to think we can. Even "richer" folks would go broke paying $3,500.00 a month for a medication. But, my Aunt's cancer medication is like that. In the first place it is difficult to get, and in the 2nd place it is something like $4,000.00 a month, for 30 pills! Why they at one time were what I would call "well off"... and even at that, there is no way that they could afford those kinds of costs on medications! They have found help that does pay for the medications, but not all are the fortunate, So, WE, and I mean ALL of us, are going to have to do OUR PART, and let our thoughts be known. We have got to stand up as a nation together, solidified, and let the insurance companies, the government, the pharmacies, doctors, and pharmaceutical companies know WE are NOT going to take this "mess" as an answer anymore. It is time to find a solution, to be finding treatments, finding answers and diagnosis more quickly, getting doctors trained and better equipped to find out what is wrong, and get us properly treated in the nick of time, not after it is too late. Like myself... due to the Sjogren's, which honestly, up until the last year when all of my teeth are literally rotting and falling out of my mouth in pieces has any doctor been concerned over the Sjogren's. If I do not mention it, they never say a word. I am the one that had to research it and ask to try the 2 medications for it. Which neither are very good, but I am on one of them. Now, I face Lord knows what, There is so "good" solution honestly. I just had another tooth pulled Monday, and I am sure I face at least 6 more, maybe even more than that that must be pulled. There is no hope for them. Then the few I have that are "patched" just to keep them there, are possibly not long for falling to pieces also. Because none of this was addressed 7, 10, 12 years ago, before the decay set in, now it is TOO LATE. And come to find out (first of all I NEVER wanted dentures and the thought of not having my own teeth still just almost makes me sick to my stomach) even those... even the latest, "implants" are really NOT a GOOD SOLUTION for anyone with Sjögren's!!! Due to the Lack of saliva, those are difficult to deal with in the mouth. I still must find ways to keep my mouth moist constantly, by chewing certain sugar free gums with Xyitol in them, or sipping certain things like green tea, water, things without sugar and without acid in them. But even at that, still it is difficult to do. Plus the entire thing with the dental implants, is not done "over night". It can take up to a YEAR to completely finish the process. Which usually involves 2 surgeries, to get the implants in place, maybe more if your bone is not stable in the jaw, thus bone implant must be done first, then the implants put in, then the special dentures that "snap" down on those implants made to fit properly. So, it is a huge ordeal, and expensive one and one that takes time to do and to heal. It is insanity!    this is just one piece of the puzzle, and this puzzle is more than 1,000 pieces. It is more like 10,000 pieces and growing each day. The ONLY end we will ever see in sight is to stand up and tell them (our Senators, Our Representatives, Our Government ... all of them) we want better, and we want all of this insanity stopped! We deserve proper health care, at a proper price... and our health care workers deserve a proper salary, with decent working times and decent working conditions... it is a vicious cycle and it will NOT end unless we stand UP and MAKE IT! ONE VOICE can move mountains... think what 100,000, or a MILLION voices can do!                                                        

Thursday, February 13, 2014

Trying to Absorb Everything that seems to be "bouncing" my way...or getting run over?

Now I am sure you are wondering what the hell I have put this up for. Unless you've been to my FB page, or have seen the latest "venture" that the IFAA (International Foundation For Autoimmune Arthritis), about now you are scratching your head figuring what else I could possibly have my fingers involved in now.

Well, the story began when I "found" Tiffany the Founder and CEO of what came from a bracelet, made with a bit of leather, a belt buckle, and was a "movement" until now they stand proud and tall as one the instrumental foundations of Patient Centered Research in Autoimmune Arthritic Illnesses. So, what does that mean to me, and then of course what does that mean to yourself? That is a very long answer that shall become clarified in the days to come, and in my book to come also. A portion of my book, will be about my relatively "short time" I've been with a Foundation, that I have watched make almost impossible changes in the way others, including doctors, researchers, patients, and people from around the globe sit up, take notice, and SEE the REAL issues that "we" the patients deal with daily.

None of our lives are "daily".... or the events in them are not for sure. We may get up in the morning, much more slowly than anyone else, "walk" some of the stiffness out. Next may come a cup of coffee, that it takes all of your energy in both hands to pour it in a cup. I've not truly been able to get a "grip" on the entire next few months coming up and all that is involved, until last night. 

After I have spent the last 6 days at least arguing over insurance, my biologic medication, the infusion center, driving my doctors office crazy, along with myself, it hit me square in the face, that in 6 WEEKS I will be going to Washington DC! Here I have been wanting to do this all my life. It has been a dream, for me to stand in front of the White House, hopefully not speaking to just myself, but someone even if people just coming to be those to take a look at the White House and happen to "hear" my story. So long, I've thought about what I would say, how I would say it, and what I would want to get across to the officials in those buildings. It is almost like trying to reach the "Pope" or a movie star, or anyone that is in any type of place of "authority". Your chances of really getting to even shake their hand might be slim to none. Much less get their attention long enough to gripe about your illness, what the government is NOT doing to help it, and what they are DOING WRONG to make it worse! My thought has been unless you have lots of money to "slide" under the door of any one of our local, state or federal officials, you might as well, jump in the back of a truck, while it goes 30 miles an hour, down a dirt road and spit... And when the spit lands back on you mixed with dirt... that is just about how much you would get while the officials in Congress scrape you off of them like they scrape mud off their shoes. 

This from here down was written this morning... I am have a very difficult time between what I feel are flares of RA/Lupus, and way overly stressed... I am a total mess, mentally, physically and emotionally... I am wondering why I even try anymore... it always turns out to be a mess for me, rather than a help.... thus the reasoning behind this post.. (I also began posting the bottom portion of this on FB and changed my mind. I decided to post it here, and just put a link in to FB...

LOL!!!! I have been seeing the new "T-Shirt" on their Foundation's Website and wondered about it. When I was filling out the registration yesterday at the end it asked for your "T-Shirt" size! That is when I got the hint we would be receiving one! Honestly, over the past week I've been really struggling with all of this. I have actually began a blog post that I am still working on about my own internal, some physical, but more "mental" revelations about how quickly all of the things that are happening in my life right now are coming on me so very fast! Much of it "good" things, but entangled in the "good" are some challenges that I am definitely struggling with. I have just taken an immense "slide down through the rocky side" of my "mountain" of autoimmune illnesses right at this moment. Since I've not gotten the Rituxan infusions as I should have weeks ago, all of my RA symptoms have hit me like I just ran into a brick wall. I know I am in not only a RA flare of sorts due to the part where the bottoms of my feet hurt, especially when I first wake up and try to put my feet on the floor, to the stiffness and pain in my toes, thumbs, ankles and fingers, which is making trying to type a nightmare. it is not that it is so much "pain", I do have that, but it affects my "ability" to type. I hit wrong keys, I am constantly correcting myself, or having to back up because I've spelled something incorrectly as I typed it, and so on. Then it the "mental" true "brain fog" that this time has me terribly aware that these illnesses are takng their toll on my body in several ways. My ability to type issues are also because of the fog. I tend to try and spell words, or type normal, everyday words, and cannot remember them, and have to stop and think about what I am trying to say, or again due to the stiffness it seems my fingers are constantly on the wrong keys. And I am at the moment "brain and physically "fatigued". I feel as if I have mentally been in a prize fight. It is just almost painful to think. I want to just scream I can't take anymore!!!!!! I AM SO UPSET about NOT GETTING MY RITUXAN, that I could scream! It is one of the most frustrating situations for me. That is the ONE biologic, that has "worked" more for me than any of the others. There is just so much going on right now I feel like I am on a spinning top, and each day it goes faster and faster. I am battling the insurance even over just getting the Enbrel. I found out it is the ONE biologic of TWO that Humana will pay for. Yet, I still have to Jump through every hoop you can name to even be on that. I even got the prior authorization myself and faxed it to my doctors office myself to make sure they had it. And now I've called the "specialty pharmacy" two days in a row, they see the script and yesterday the woman on the phone says, "well, it appears maybe they got the "prior authorization form" but they are requesting "more" information from your doctor??? What the hell more information do they need? I've been going in this circle with them now for at least 4 years and each year it gets worse, rather than better. When I first began all of this autoimmune illnesses whirlwind, Humana, rarely questioned anything. For the most part, even all the surgeries I went through even 8 in ONE YEAR, there was no hassle. Many of them were performed and the insurance never even need a "prior" request on those. Then it began about two years ago. I began to notice my doctors would try to send me to a specialist, and the specialist would not be a "preferred provider"... and I had not had that before. Then they would "piss and moan" over certain medications with these "prior authorization" forms... not many but a few ... year before last, it was SO BAD that the first part of the year January and February, they made me get a "PA"(Prior authorization" on JUST ABOUT every medication I had been on for 5 years!!!! Heart med, Muscle spasm meds, you name it, they wanted this "PA" form for it. I argued with them and the answer I ALWAYS RECEIVED FROM THE INSURANCE WAS "it it MEDICARE(the government) MADE ALL THESE CHANGES" thus "they" the insurance company HAD TO request these even on medications for my heart, blood pressure, stomach and so on. That was the most asinine thing I had ever heard of. I spent hours and hours and untold hours getting that nonsense stopped! My doctors of course were all annoyed, and I don't blame them! They "put a patient" with high blood pressure, or stomach issues on medications, they are on them for years, then all of a sudden here comes the very insurance that paid for them asking for the doctor to fill out forms? In the first place the doctors do NOT have time for this. In the 2nd place it as ridiculous! Well, all of that finally went away I think. Come last year I noticed ONLY if it was a medication that was new to the patient and for the most part a "specialty" med they would then request a "PA" form. Yet, even then, the doctor filled it out, faxed it in, and I had my medicine quickly, there was no wait, there was no 72 hour "review"... and I certainly did not HAVE to wait 10 DAYS or more for my "prescription" to be processed once all of the other stupid paperwork was done!!! To add insult to injury, then, me not really realizing that Humana WILL NOT PAY for any "specialty" biologic medication (even though on their website they will "price" it to you at your local pharmacies", and I had checked prior to all of this and knew my local Wal-Greens did carry it and they had a specialty department that did the paperwork and then would let the pharmacist know when it was all done and when he could fill the script. Well, guess what? Then I come to find out that Humana will NOT pay for the local pharmacies to fill these medications, it MUST GO through Humana's own "Right Sour Specialty Pharmacy"... so guess what that means, more delay, and it was delayed even further because the "local pharmacist" could NOT understand I HAD to have the prescription faxed over to Right Source!! I asked 5 different times to "fax" it to Right Source and kept continued to try and "run it through" to the insurance! And of course the insurance kept "denying" it!!! It he done it a hundred times, Humana is NOT going to pay for it, unless it comes from "their own" Specialty pharmacy! Wonder where the kickbacks etc go on that one?????? Of course FINALLY I honestly think my doctors nurse faxed the script herself to the correct place Monday morning. Then she gave me the fax number their and reminded me that she knew a "prior authorization" form would need to be sent to her and filled out, then sent back to Right Source! SO, I was lied to because Wal-Greens told me they had gotten the "PA" form. If they had then there would not be a call for another one I was told at Right Source, because it would have been in Humana's website, thus they would not NEED one, the one would suffice!!! So, let's start the phone calls and the whirlwind again! Now I had to "dig" through Humana's website (which I already knew the drill on this one) find that form, get online and fax that form to her (the nurse) at the doctors office. Because if I had WAITED for then "pharmacy" to request it, that might delay it for weeks because that mean the doctors office would have to dig it out, fill it out, and send it to Humana for approval. So rather than jump through another 25 steps, I tried to save a few and sent it to her myself. Which I am not sure even made a difference. For two days I continue to get the same response. Well, it looks like we are "waiting" for something... in fact yesterday's phone call to "Right Source" is what led me down the track to even when we receive all of the information it will take "72 hours" for review? What more is there to "review" when you have everything but it signed in blood and stamped by the President stating I need this medication!? And it just continues to float around and around within the spinning, ever spinning, world of what we should NOT have to go through! Now, with all of this, plus I KNOW without a doubt, it is not long, until the Sjögren's has taken everyone of my teeth and crumbled them to nothing. I have at least 4 right now, that are just "pieces" of teeth. I barely have any jaw or chewing teeth at all. And the ones up front are so fragile I fear biting into anything... I have my 4 bottom front ones that "so far" have not shown or I've "felt" them having issues. But that is just the problem. They can "seem" fine one day, and the next you are eating, and suddenly there is a "space" where part of a tooth was! No Kidding! It is insane. That is usually how it happens for me. And it does not have to be something difficult to chew and so on... just normal eating, and then my tongue will suddenly "know" something is missing... sure enough an entire side, or back of a tooth will be totally gone! I have two of my very back jaw teeth, one of which he could not even "fill it" permanently because the cavity was so deep, he said I would not be able to withstand the pain because of it being so near the root. So, he put some of the "temporary" type of filling in their but it has already itself became partially gone... and the one just like it began hurting and feeling "odd" yesterday, thus I am almost sure it will have to go soon also. Right now I would bet I have 6 that either need to be pulled or slightly a possibility a filling may help them. But since it feels as if an entire side of it is gone, I am betting all of them but possibly one have to be extracted. That would have me literally with maybe 3 jaw teeth in the top, and my 6 or 7 top and bottom front teeth... and those in the top are just "patched" together... they are trying everything to keep those in as long as possible.... So, I ONLY "saving" grace in the matter of my teeth is that there is a possibility due to all of this damage being from "Sjögren's. the insurance MAY pay for a specialist. In fact one of the "nicer" women at Humana even gave me the name of a doctor who is more of an oral surgeon that might be able to "screw" the teeth into my jaw bone (seeing that my jaw is not totally messed up with the osteoporosis) because "dentures" are NOT the answer for anyone with Sjögrens'. Due to no saliva or very little those will not "hold" properly in the mouth. I just am not able to fathom the amount of pain, expense, and what I will have to go through to have these teeth "fixed" or something done with them. Hell a "root canal" and crown is over $3,000.00, much less that kind of thing to be done! So, within the spinning web of ALL that is so amazing, and yes my birthday is Saturday... all of the horrid nightmare of bad stuff keep putting a damper on the good things coming my way. I am ready to throw in the towel... and just sit on the sofa, and forget it all. I've fought this battle way too long, and way too hard... and I am reaching the place that that mountain top is way too high for me anymore... I don't know where to turn... and I certainly really do not want to go anywhere over the weekend... I know it is planned to go, but between money, and the operation, and me not feeling well, I am just not in the state of mind to go anywhere right now. Hell i need to go grocery shopping and I'm having a huge struggle in trying to convince myself to go and do that. I am just tired of it all.....