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????

#RABLOG WEGO Day 7 - Great Blogs I have read!

Wow, I've read many great blogs and blog posts through my years of ever evolving RA, Lupus and more, when it comes to Autoimmune Illnesses and more...


http://floatlikeabuttahfly.blogspot.com/

Even though she had Still's Disease, many of our AI illnesses are so close together, or we have had several different diagnosis' along with way.... I think Kerry had been diagnosed with JRA at one time...

Another One:

http://gimpygal.com/

(Which Used to be RA GIMP



a #3rd one:

http://www.rheumatoidarthritisguy.com/



#4 - https://warmsocks.wordpress.com/


#5 - http://realitiesofra.blogspot.com/


#6 - http://lolabellaquin.blogspot.com 

  ****   Kelly You are such a sweetheart and I feel "connected" to you because you share such a deep commitment and passion for your "fur-babies"....


AND I know I am MISSING more!!! There are others by Amanda Johns, http://page.is/jessica-gimeno and more... I will add them later today, but I am yet in another rush... Need to help my Mom something!!!!!

I just wanted to get this many in for now!!! All of you are incredible! I am so thrilled to have been a apart of this!!!!!! Plus I HOPE WEGO Health Continues to do many more actvities like this!!!!     #RABLOG

I just wanted to say, that I know there are others I want to recognize.... I just had something very important I had to help my Mom with... so I will be adding to this list of Blogs that truly "talk and touch" me... I have NOT left anyone out on purpose that is for sure. :)


As I said yesterday, I want to add more to my "list" of blogs both RA, Autoimmune, & a combination of health related issues. Some of the list on the front page of my blog, I noticed have changed URL's and so forth, so I will get all of those updated too. I want other to be able to enjoy each and every one of you and what you have to say in your blogs... about life, about RA, health, emotions, the physical, mental and in all ways we are effected by these illnesses... there is Sjogren's that many know little about yet it can and DID WRECK my life and my teeth! I now have a full set of dentures due to Sjogren's It is critical for ALL of us to speak out and gain attention so funds for research, medications, new doctors, and all can be gotten.... and WE are the perfect voices, because WE are the ones suffering daily.....

I have a "personal" issue (hopefully this will be the last major one for awhile) to get to between now and Thursday afternoon.... once all of that is behind me, I hope to update my own blog, and some more of the advocacy, activist, Ambassador's, Volunteer and more things that I so enjoy as well as finish my BOOK and work on my blog!