Awesome News From the AF and on Capitol Hil in Californial - about "steo-Therapy" - A "step" in the right direction for California!

http://blog.arthritis.org/advocacy/ab-374-step-therapy-arthritis/

Chipping away at the issues that keep us from our medications due to "step therapy", Pricing and much more!!! This is certainly a Victory!

Tips on How to Share your "diagnosis with family, friends, the public and so forth - These tips may help in any type of chronic illness or pain issue, not just autoimmune

www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Living-Well-with-Rheumatic-Disease/Sharing-Your-Diagnosis-with-Others

The above link comes from the Rheumatology site and it gives you assistance on whom, how to, what to, say or maybe not say about any illnesses such as RA, Lupus and other autoimmune issues, but many of these same tips, when you have an "invisible illness" especially could help you also.


I know for many, they feel an isolation, a coldness from others, when they explain being "chronically" ill. Some want to try and put it off to you just being "lazy", or to use as an excuse to do or not do something. Others thing you are just faking it, or that it is a way to gain attention... all of which is total bull, but I can attest that even DOCTORS can give you that feeling. In fact just last week, after being ill for months with other issues, and feeling as if I had a Lupus Flare coming on, that ONE DAY after an entire year of not getting to see him, but deal with his PA, and guess what? That is the one damned day, I feel "better"... and I had emailed me on several occasions about how lousy I felt and what all was going on, and yet then he walks in expecting me to look horrible and I look fairly well..... I knew he wondered if a part of me, was just complaining to complain. So, then I spent two entire days, plus even the weekend feeling lousy, a headache, a stiff neck, the mylar rash my throat feeling swollen and raw..and today Mom and I went into see our PCP.. well I did not look all that well this morning, BUT I also once again did not look as "sickly" as I had felt and been over those past 4 days... I did tell him that my Rheumy gave me the flu shot.... and i told him usually I kind of feel lousy or maybe achy a bit, but never have I ran a fever, high enough that again I was almost hallucinating... every joint hurt, my head and neck hurt so badly... and so I thought he would give me a corticosteroid injection to slow down or help this Lupus flare go away... well he said the "new" flu shot this year contains FOUR rather than 3 strains of flu and thus my body may have reacted quite differently due to being autoimmune & if he gave me the injection and the prednisone, then my flu vaccine would basically be "useless" because my body would fight it off if I took that now...

So, I have to wait at least another week, and if I still feel as if I may have a flare THEN I can go in for the injection and medication.... so now I have to I guess just tough it out, which all too often is easier said than done.....

Life drama, illness, chronic illnesses and the Journey to where it leads us. -

Yes! I've done training with IFAA when it was still in it's"baby steps' 　 and it is incredible to see how much has happened over a short period of time. and yes, Tiffany Westrich-Robertson Ifaa and some of the rest of you knew about me going to Washington DC in 2014 with the Arthritis Foundation! That is one of the most single events I've been in, that made me feel, see, and total know I DID and do make a difference... I actually made Platinum Ambassador, I guess for 2014/15, and still do lots of things for the AF, but also for WEGO Health, and IFAA of course, plus like the blogging for RA week, then the week long bloggers for Invisible Illnesses too.... my blog is FULL of those true "people" that are out here each to day truly MAKE A DIFFERENCE!, plus they help us "learn" that we do help with letters, emails, visits, and keeping in touch with our State and Federal Congress People... it is not go unnoticed as I figured out.... my heart and soul were truly set on doing MORE this year, with my advocacy, activism, Ambassador and so on "roles"... but I also feel I have to keep my blog very current, and if I post daily, or sometimes even more that helps to get the message out to others also... due to circumstances far beyond "my control" with the horrid accident for my other half in 2014, that turned out to be a huge game changer for everyone... then I became ill on several occasions... and was off my RA med - the Orencia, due to the fear of those injections may contributed to the cellulitis and also then the abscess. And I still am dealing with a lump in my other thigh,and the one that had the incision in it to drain is still not well and still drains some... but it is better than before - some of you probably know that I am in the process of getting divorced and in fact I have already "filed the petition" and some other paperwork, and am supposed to hear today about the court date... and of course the "mediation" that the "judge" ordered about the accident did not go well as of yet, that may still change if the trucking company owner decides to NOT go through COURT with a jury and so on.. he is back in the Seattle area,,, then of course I lost my Tazzy - my Pug who was about 13 years old, very suddenly, and she was my life.. her and her "Bub's" as I call my Chiweenie,,, so things have been NOT what I planned for sure, and my prayers are that come January 2016 ALL of that changes and may it be filled with MANY awesome things for ALL of us.... ;)

i am "suffering" from a "thing" I guess you might call it and Ive really never quite dealt with these feelings before. So, I am not even sure exactly how to explain it to all of you, but by chance if I do tell what I am feeling, some of you may have been through the very same or similar situation. I of course have been really what you could call "strung" out emotionally from all that has taken place in my life this past at least 6 months now. Plus I decided it was time for me to get back into a church that I thought I would like, and feel "comfortable" at. In between everything, of course most of you know that Jim and I are legally separated and I have filed the petition for divorce. In fact, I turned in some documents on Tuesday that gave me a court date, which is right after January 1stt... so I guess you could say, once again, I "start over" in life... things have changed and will continue to change, and I am also aware between my birthdays seemingly coming closer together, and that my chronic illnesses, although not horribly bad (especially as soon as I am to see my Rheumy that I had waited 6 MONTHS to get into, never fails.. I have felt like I've been ran over twice for months now, and the ONE day I feel "better" happens to be the day I see him, and it made me furious at my body! Then I look like an idiot, since I had told him for months now about all of the crap going on with the AI illnesses, infections, cellulitis, then an abscess... and I know he probably thought I was a "lunatic"... but sure as HELL, the very next day.... I saw him last Wednesday... on Thursday I felt worse than ever... they gave me a fly vaccine while I was there, but I had even told the nurse I have really never felt "lousy" after the vaccine... maybe a bit achy, but other than that I am usually fine... oh heck no I woke up Thursday and felt like someone took a sledge hammer to my head, neck, body, and everywhere... I had the chills, ran fever, and hurt like I was never going to get over the severity of the pain, my my back, my legs, my arms, and I was so fatigued I spent Thursday and Friday for the most part of the sofa. I was just feeling horrible, as either I had a very bad "flare with the Lupus" OR I had the flu!!!!

In fact all weekend, I've not felt well, and I can't think, I just do one thing, and lay it down, then later go back and see I never finished it... or I've tried to repair a lamp that Mom had now for TWO days, and I bought the entire kit, and it should work no problem, but for some reason, I cannot think enough to even do that.... now I fixed my lawn mower even changed the oil, and guess what fell over dammit and spilled oil all of over back patio tiles... I've tried everything and can't get it out, cat little Epsom salts, even Dawn dish soap, so today I put some bleach on a couple of the small spots to see if it did any good or just made it worse...Okay, enough of all of that, (the "writer in me") and my long drawn out posts.... I have dealt with of course everything else in the world - paperwork, trying to keep up things as far as my own stuff, and also Mom's stuff. It seems one of us always has paperwork, or doctors visits, or labs, or so on and so forth these past several months. In fact I am still extremely concerned about this "lump" on my right thigh. It never got larger but it did not go away either, and just like the one that finally abscessed it has this "grayish" tint over it - yt skin in itself, looks kind of like it is a grayish color.. and it could be anything, just as the surgeon said, it could be a harmless "lipoma" and he can take that out anytime I want. He just did not want to do two incisions on me at one time... due to all of those others issues with health I have, and I intend on discussing it with my PCP - Mom and I both have follow up appts with him in the morning.... along with several other things, for myself and for Mom... she told me yesterday and I don't know how long it has been going on, but she is short of breath again, even walking out to the mailbox and back.... so THAT in itself scares the HELL out of me... when that first happened it is because of a "leaky" valve and if the medication regime that the cardiologist has her own, quits working, that means open heart surgery - so then I got to understanding why, she is not really jumping up and down to go to the Casino... we have free rooms - like both of us for two days and then 2 buffets a piece.... so other than the small amount and I mean small that we gamble on... my car gets like 52 miles to the gallon, so you can go on not much gas at all there and back......

Anyway, back to the issue I am having... Last weekend for some "odd" reason, and I still have not figured out why, Sunday morning (I mean two weeks ago not this past Sunday).... I had the very ominous feeling, that came over me, even while I was getting dressed, and it was like I "felt" I was told "do NOT go" I thought it was silly, but the more I got dressed, the more this just strange feeling, overcame me, and I even cried about it, I was so alarmed as to "what or why" I felt that way??? It just shook me to the bone, as to what would have happened to give me such an awful feeling, especially going to church of all places... and I even tried to blow if off and go anyway, but I could not shake the feeling and I finally just changed my clothes and stayed home...I've had 'strange" feelings come over me through my life, that may alarm me into thinking may I should or should NOT do something, go somewhere, and so on, but nothing like this. I have enjoyed the new church and even became a new member 3 weeks ago on a Sunday.. So, for me to have such a weird thought such as that made me wonder if all of the stress is really causing me to "feel a certain" way, and yet there should be no reason.... Of course losing my Pug, Tazz, I am still very much not over losing her.... my grief is far from over, and what concerns me even more, is that Bub's is just not himself either. Usually he wants to eat breakfast with me, and will sit at my feet for me to give him a piece of mini-wheat or anything I eat he is usually up and wanting a bite... The distress, stress, or whatever you want to call it about this entire lawsuit ordeal has not helped what so ever, and now, there is really even more stress because if "they

don't try to offer to settle, that means court in Dallas for a week or MoRE - with a jury and the entire mess... of which I am certainly not in shape for mentally, physically, emotionally, or even money wise... that would mean be having to either travel back and forth every day for at least a week, and/or me stay up there close in a hotel... which I have to have someone to watch over Bub's... I am already concerned and worried enough about him, I really hesistate to leave him for any length of time since Tazzers passed away... he just shows signs of "grief to me, and frankly I am quite worried about him - he just has that look in his eyes, when I leave even for a short time, and when I come back he greets me even more than before, jumping, kissing, wanting to "talk" to me.... like he feared I would also go away and ever come back....

There is a GREAT GREAT DEAL of WORK and repair my house needs, from outside painting and some windows either need to be recaulked or a couple that really need to be replaced, which I can put the pins in and use the glaze on them, but still I have to have someone to help hold the glass up until I can get a few pins around it... I need about 5 or 6 of the boards from the bottom of my house going up, completely removed and I need some stuff that almost looks aluminum, but it stops any type of rotting due to being wood on the ground, and would not have to worry about cats or anything else digging to get under it... just about the time I think I have all of their holes covered, they find a new way in, and we have 2 cats that got either poisoned or sick, so they run under a home like ours and hide, but then they die under there,. and talk about something that "reeks" - anything like that gets under a house and either is sick or can't get out.... the smell is more horrid than I can imagine or explain... and we had it happen twice when we first moved in... so most of the places are repaired in one way to the other, but it looks horrible, and then I need to put new fence up where my neighbor took down a couple of old buildings and now there is nothing there so it leaves my backyard more open and I hate that... I have several trees, that are either in need of getting rid of because they are dead, or pruning enough so they will not grow into the fence like happens around here.... so I've been trying o hard to GET what I can get done - around the house... But, I am so SLOW now, or I tire out, or I have to run to do something else... I feel as if I am on a merry-go-round with NO PLACE to finally get off and stop the ride... I am not feeling "alone", but I do feel lonely with Tazz gone... I love Bubs to death, and he is my "rock" right now, but I know he misses having a playmate and I think that is also what is wrong with him.... he was used to them keeping one another company, even if they were just on the sofa, they were still there together..

So, I have been trying to decide if I want to get another puppy now, or if it is too soon, or if Bub's would be jealous or happy.... just lots to take into consideration... it has to be a very "small dog" for me now... because even Tazzy, and Bub's I can and could barely pick them up.... so I was thinking something on the line of a "Shi Tzu", or a "Shorkie", which I saw, guess a cross between a Shi-Tzu and a Yorkie... I really prefer I get it from the puppy stage and me train it myself... I've learned lots of lessons after these two, so I know what I will and will NOT do again...

But, they are also expensive and I do not care about "papers" or being "registered" - as long as it is the "type" of dog I am told it is from day one,.. and I really prefer not to get a puppy from what they call a "puppy mill"... I am not thrilled at all with those types of places, but I do want it to be already through with its first round of shots, worming vaccinations and have a clean bill of health when I get it.... SO and this includes my favorite "Vet" Venetia Shafer - send me some information on what breed I may like, something that will remain small, is from proper breeding but not a puppy mill, and any "ins and outs" of possibly one breed over the other... and why.... plus give me a very HONEST answer about whether you think I am doing this much too quickly, and just trying to get my broken heart to heal... I kind of feel as if I am "betraying" Tazz - by bringing a new pup in so quickly, and I also want your opinion about whether you think Bub's will be "jealous" or would he like a puppy because he loves to play... and Tazz was already getting up in age and did not play as much after he got about a years or 2 old...... In fact send me a Private Message or you can email me also and let me know your thoughts... PLUS what do YOU think is going on with me about this "odd" thing I have about going to church - because it happened again yesterday... of course I had not felt well for two days, but I even took a shower early enough Sunday morning and had plenty of time to finish dressing and go.... but once again it was as if "someone" or "something" was either "telling" me, or more just giving me this horrid feeling that "don't go"... I even tried to laugh it off at Mom's later yesterday, and told her maybe the "devil" is speaking to me, now since I joined the church...... I was "joking" around as I said it, but then wondered "why" this feeling is so apparent and very strong... also I am facing getting new Medicare Advantage Plan insurance for either just myself or again for her - and this time I HAVE TO BE SURE (as I thought I was last year0 that ALL OF OUR DOCTORS WE SEE, AND ALL OF OUR URGENT CARE, THE HOSPITAL AND SO ON ARE DEFINITELY COVERED... I went through that online, the on the phone, and then to the insurance website but you can believe they CAN and DO CHANGE their minds once that know it is too late and the new year has began. I cannot lose a couple of my specialists at all, period! And believe me they lie, they cheat they say one thing on the phone - and I've watched good people have to lose their entire life savings to the insurance companies, saying one thing and then doing something else...

So, I am not sure if it is ALL that is on my "plate" and "to-do" lists, plus I feel as if I have NO TIME to write, to really work on my blog, which I am working to change the entire site a far as how it looks and feels... I began working on a few things today..

I know this lawsuit, as I've said now 30 times over the past few weeks, I wished I would have never been involved at all. - it has NOT been worth the mental, emotional, and physical agony, that I have gone through.....

So, I've got several "lists" going., some to do back to doing what i had been doing, my blogging, my activist, the Platinum Ambassador, and my writing, and blog - it requires "a time frame daily", it requires a time when NO interruptions are there, and then is they list of the "have too's" in order to maintain and keep this house from falling down around my feet....

Anyway, I am also distraught that my Rheumy wants me to quit the MTX! Well, that is more for the Lupus, and I've been on it almost from the the time I found out about the AI's - and my PCP has always taken care of the "Lupus" portion of my illnesses, and my Rheumy is more about the RA - thus the biologic, the Sulfasalazine, and a few others... so my Prednisone, the MTX, the Plaquenil, and then finally a med for the Sjogren's - which I looked up and discovered the Pilocarpine.... So, my Biologic, the Sulfasalazine... was taken are of, and my Rheumy knew that my PCP was taking care of my Lupus, it is just easier for me to go to him, for a Lupus Flare, in which I can have several in a few months, or may go for a long time and I never have to go back on the

the huge 14 day dose of the Predisone, in which I hate, but the way I have felt for the past 3 day or so, I almost think I am having a very bad Lupus Flare now, probably due to the stress of it all, and then feeling so stupid when I went in to see the Rheumy & I "seem" okay that one day....

So, my question after all of that to all of you is "DO YOU THINK I MAY BE going through some type of "mental issue" causing this "overwhelming" feeling about where NOT to or TO GO??? I am NOT sleeping well at all.. I have several over this past SEVERAL THE NIGHT TERRORS HAVE BEEN REALLY BAD! IS A PORTION of this mess, to do with how terribly our cities are being treated, and no regard from the "innocent lives" they either take or ruin for sure... I get to where I cannot stand to see the news... it seems every day something else has happened even in our own "back yard" so to speak...... Mom seems to think it is because I don't "rest" enough... which is bull, sure I am up and doing thing outside, inside, wherever I can feel going to do because that is a portion I think of what does keep me "sane"..... Anyway, I close now with a hello to everyone... I guess many are already in preparation for Autumn, the weather and time change, and then the colder and shorter days with daylight, which just drives me nuts, because doing some things outside are hampered by the weather....

Some thing that ALL of us need to do - Chronically Ill or not.. and I felt it kind something I wanted to post... even if just to reminds MYSELF to do this...

We should ALL take HEED - If WE are not 'UP TO SPEED" ourselves then WE cannot HELP others... sick or not... so many of us "feel guilty" when you feel like you really cannot do something, but you do it anyway.... Thought I would share this

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...

Chronically Ill, Feeling Chronically Hopeless and Helpless - Trying to sort out Autoimmune illnesses, from the entangled life many of us have....

I am having an extremely difficult time (with everything) I guess I might as well say... but several are just really getting to me.... first of all, as many of you who knew about the "accident" in March 2014, which totally tore our lives to shreds (if things had not already been lousy as far as health issues)... and then that happened... most close friends know about the "ensuing" "law suit" that has been ongoing now for almost 20 months or so... anyway, many know that my own health just went all terribly down hill due to the untold amount of emotional, mental and physical stress I endured. I am NOT saying at all that my "partner" who had been married to me for 10 years and we had been together for 13 years, has gone through as much and in many ways MORE emotional, mental, physical and psychological stress... the turmoil for few seconds were on I-45 headed into Dallas, took what was somewhat of a normal daily life, although I had endured several chronic health problems, and turned lives, mine, his, my Mom, my two kids... and many others have been effected by this... He decided to move on, and why honestly until this moment, I am not sure why.... but nevertheless, he had his reasons, some I may 'get" others I don't get at all, but again I went through and am still going through a "mourning"... a "grieving" process even though there was not a 'death" in this instance, thank goodness, it still is a LOSS... a loss of a relationship, a friendship, we did everything together... and now I am here and he is in WA state.... so with that said, after losing all of my teeth due to Sjogren's and the stress.... the RA, Lupus and so forth growing worse, then 2 bouts of double pneumonia for me, and now a break out of cellulitis first, along with the abscess that was after the cellulitis... all related to one another, and another "lump" that has not been cut open and checked yet. It probably needs to be biopsied also, although NOT growing larger as this 1st one did, it is also NOT going away either... now add on that I have some issues on my very lower lumbar/sacral spine, that probably really need to be repaired with surgery, then my Mom, who began like I did, with severe "hip" pain, come to find out hers is also related to her lumbar spine. In between all of that, I became terribly sick to my stomach for days, and days and then Mom also had an entire intestinal tract "thing" going on for weeks and weeks. WE HOPE her problems have now been addressed and that part is over with... but i know she is frightened about having stomach, intestinal issues, especially since her last living sibling, my Aunt Geraldine passed away about 2 months ago after fighting a rare form of digestive tract cancer.... so Mom I know is concerned knowing all of went on like that....

Then last week after trying to get a chest Xray performed about 7 weeks or more, I FINALLY did get it, and the information is at my Rheumatologists office (the Xray was done due to a TB blood test not being "correct" thus they did the chest X ray as a followup) but I have not had ANY of my "biologic" meds for the RA since I found the lump in my leg... so for about 3 months I've been terrified to take it knowing it can cause an infection to get worse... but I do see my Rheumatologist, next week thank goodness, if it does NOT get cancelled again because someone did not do the schedule correctly....

And he sent me an email saying we would discuss options at my appt... which is fine with me.....

NOW, onto the part.... many of you also know I lost my best "fur baby" my Tazzy week before last... well on the 22nd of September, I think... her poor heart I guess was just worn out, and after spending an incredible last night with her, singing to her, rocking her, telling her all about our good times together, that early morning she passed away in my arms... I still cannot believe at times she is gone... I come in from errands and think she will be there with her "bubba" just wagging tails and so happy to see me... whether I am gone 10 minutes or 10 hours.... when I walk it I always get a very "welcome home"..... and Bub's my "chi-weenie" he i about 5 I think... 5 years old or so... time gets away from us... but bless his heart... he is missing her, and I hear it when it cries at times, and see it in his eyes... I think he thinks I will bring her home one day... like he is looking for her to be in my arms.... and I had her cremated, so she sits here on my desk right beside me... and I will take her little cedar box down and let Bub's see it.... this morning when I opened it for a moment... he sniffed of it, and kind of looked odd... and then it was almost as if he was telling me "no" that is not my sister.... And he just acted differently than he used to.... so I am trying my best to give him as much love and extra attention as I can... I brought him a new toy home yesterday, and he has been doing really good... I thought he may begin having "accidents" in the floor but so far he has not done that but maybe once.....

OKAY NOW TO THE THINGS I AM CONFUSED ABOUT....

A "part" of me wonders if getting a new puppy in the next few months when I find one that is what my ideas are... if that is an "okay" thing to do, and how Bub's will deal with it... I do know he misses Tazz, and he always wanted her to play, tug of war, with the toys... or Bub's likes to sling it from side to side, and he likes me to call his name and tell him "Bub's sling the heck out of it".... so a piece of me, wonders if this is way too early to think about another one, both for myself and for Bub's.... I NEVER want to feel as if I tried to "forget her" in getting a new pup.... and she will always be the light of my life... and nothing will ever change that... the love we shared is not measurable... but also about Bub's... would he feel "less lonely" and want to play with a new pup, or would he get jealous, and feel as if he takes "2nd base" because that is sure not true... him and Tazz were and would have always been treated equal in love... my heart is large enough to love them both... and I try to never show I favored one of them over the other.... plus I am fed up with the world, this nation, the greed, the lying, cheating, self righteous indignation I witness each and every day... whether online, the news, from the papers, wherever I look all I see is total "take care of yourself" and to heck with the needs of others... I was NOT raised that way, and never will I try and do something intentionally to do any and all of the horrible things seen in this nation, the state, this town and this world....

Getting back to my own "personal issues" I used to be able to do just about anything when it came to home repair, car things, and anything DIY - I love it, loved it, and could install a water heater myself, put up ceiling fans myself, paint, you name it, I could do it... and it is NOT that I do not have the know how anymore... I Don't have the STRENGTH especially upper body... my ceiling fan went out in my living room of all places.... and I have it own night and day usually almost 365 days a year, either to cool things down, or pull the warm air down in the winter... so I knew the motor was beginning to get slower, but I got another over a year out of it, but I have to replace it!!! And even with my ladder for inside that I have, I can do it myself, but my arms after the shoulder and neck surgeries, tend to be not enough to hold much of anything over my head for any length of time.... believe me I almost bought one yesterday, to bring home and try... and YES I know to make sure the power is all off to that room etc.... and could but if I get in the middle of it, and have no back up plan, then what the heck? I would have to leave it down, tape the wires up and find someone to put it in anyway.... I am at a crossroads in so many ways in my life... this stupid "hearing" for the lawsuit is supposed to be November 4th, but we do not know for sure, and probably won't until the week before... AND I NEED TO HAVE THAT LOWER LUMBAR/SACRAL surgery before year end due to insurance... and that is another thing , I am going to also have to do research on these stupid Medicare advantage plans... the one Mom and I have now is useless... it does not even cover a HOSPITAL in this county!!!! It has just been a nightmare with them, and as far as I am concerned AARP Secure Horizons - /United Healthcare/ I WOULD NEVER EVER RECOMMENDED THEM AGAIN!!! They flat lied when I looked at their website, and called a number of times to make sure ALL of our doctors, meds and so forth were covered... well once they have their claws into many people AFTER you could NOT change until the next open enrollment, and they did things like "drop doctors" even those they said they would cover, sent some "new cards" that was NOT the policy that person wanted and so forth BUT for Mom she could take her Medicare back, and pay for a "Medigap" Supplemental policy... but for ME since I am under 65 - I have found only ONE "supplemental" policy and it was 700.00 a MONTH!!!!! No one can pay out like that especially if you are disabled anyway So, as you can tell, I've got lots of research, decisions, and so on to make... and I so wished now I would have never been "named" in the suit.... my life would not have nearly as much stress on it..... but hindsight is 20/20

#invisibleillness Blog Post - and talking about the "fight" of our Life!

"Invisible Illness"? A term to some that would or may not make any sense. Usually for the most part, if you have an "ailment",  surgery, are ill with bronchitis, even things such as diabetes, people tend to "see" outwardly some signs of "illness"... a cold, the flu, even something such as hypertension, high blood pressure, will bring some outward visions maybe the person's face tends to be red, or they may show signs of edema, swelling.

Obesity, is a disease. Of course that, or anorexia, those ailments are also able to be seen.

Someone who has a loss of use of their limbs, such as legs, arms, or have an injury severe enough to require a cane, or a walker or wheelchair... all that can be seen....


Yet, when you "see" a person with Rheumatoid Arthritis, Osteoarthritis, Lupus, Chronic IBS, Pernicious Anemia, MS - at some levels, Mysethiana Gravis, Sjogren's, or chronic types of nerve pain, migraines, and the list goes on and on of true illnesses, that are often not "witnessed" by the outside world. Chronic Pain, which can result in so many, many 100's of different ways, may not absolutely "show" to the outside world.

So, when you see a person parking in a handicapped zone, and they have a placard, even though they may "appear" to be "fit as a fiddle" - never assume that is so. Some days, I may not use mine, or feel like I don't need to. Other days, it is almost imperative for me to try to park as closely as possible, especially is a large store, such as Wally World, Beall's, Penney's and you know the rest. I maybe in so much pain, or feel so weak, or so fatigued, it is all I can do to go in, get exactly what I need, and get out. But, outwardly someone passing by, may not see that in me.

I am a recent new member of a church. Some people there know me, or have made it a point to get to know me, thus they can "get" some reasons why I may appear to look one way yet feel totally another.


I've found that even with my own physicians... if I "remotely" go in for a follow up visit, especially with the Lupus, RA and so on, I had better NOT "appear" all that "better"... in other words, you walk in and even though that physician may have been seeing you for years, if you come in dressed in a nice dress, or nice jeans and shirt, have makeup on, and your hair in place... and jewelry on, some see that as meaning you are "okay"... which can be as far from WRONG as possible!!!!

99% of the time I go to my doctors, whether the Rheumatologist, my pain doctor, my PCP, my heart doctor or whomever, I make sure I DO NOT appear like "nothing" is wrong. Now, that does not mean go in appearing as if you are on "death's threshold"unless for real you DO feel that badly, and believe me there are times I do look it and feel it... but if I am having issues that I feel I want them to really HEAR and LISTEN to me, then I dress more casual, usually forgo most of the makeup, and not come in joking with the staff, and laughing it up.... because no matter what "medical records" show,  that "appearance" is what can make all the difference in whether your true concerns, pain, illness, problems are truly addressed or are more brushed off due to the fact you appear to be doing fine....


In fact, I know that most of us say, "Hey, how are you"???? or we are asked that in any setting and especially in the doctors office. I've come to the place that I say, well not really as well as I want to be, and that is one of my main reasons for being here, something is wrong, I am in too much pain or this and that are swollen, or whatever all of the symptoms that have been going on, I make sure I totally explain that, and I do NOT any longer, give that "oh, I am doing okay".....

Plus with "invisible illness(es), they are often just that "invisible"... and I always go with a very long list, of symptom, especially new things, of my mental, emotional and physical shape.... If I have heard about a new medication, or something that sounds as if it could be right for my situation, that I put notes down and I go through each and every one of them explaining, what it is or is not, how long, when it happens, what type of pain it is, and as you can tell, I try to MAKE any specialists, doctors, radiologists... whomever is doing something on me that moment... I get all of the information possible, and I ALWAYS ASK for a copy of the "test", lab, dr. findings, surgery notes, and so forth... I get it all, and I keep it all... that way I have PROOF that this, that or the other happened or did not happen so I can keep up with it, and also take it to other physicians that may need to see me in the future...


The EXTREMELY REMORSEFUL thing about having a/AN INVISIBLE ILLNESS(S)... is that YOU FEEL ABSOLUTELY INVISIBLE YOURSELF!!!!

There are so many times in my life, whether it be at a doctor, having surgery, going through one thing of the other... is that I feel as if I am just a "ghost", another "body" for them to work on... and that the "person" that is there, very real, with every breath you take it is like they could care less what you are feeling, thinking, going through... it is all MONEY, POWER AND GREED!!!! I CANNOT SAY how many times I've repeated those words as of lately.... MONEY, POWER AND GREED!! Where is ANY Sanctity for the HUMAN BEING AND HUMAN LIFE ANYMORE????