Showing posts with label Invisible illness Week 2015. Show all posts
Showing posts with label Invisible illness Week 2015. Show all posts

Sunday, October 11, 2015

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....


Friday, October 2, 2015

#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????

Sunday, September 27, 2015

Invisible Illnesses Week IS Here! Join Me!!! I havve posted this blog, put it up on Twitter, FB, and I also have a link to the #invisibleillnesses












http://invisibleillnessweek.com/




 You may also participate in several activities during that week! I know this is a very tough subject for so many of us.



I realize for myself, I find that I am always trying to "explain" why I do something a certain way, or why I can't do certain things. And I also realize unless someone is close to you, they just do not "get" what an Invisible Illness is, nor do they get hwy you have a "handicapped" parking sign" - or you do not go out as much, or many things in your home you must either live with, or try to find someone to help you with.... This is just a tiny small amount of what I've blogged and written about in my years and blogging and many more writing.... 

I shall much more to say on the subject over the next weeks coming up!


This kind of slipped up on me, and I was not aware it began so quickly - I have LOTS to say about "invisible Illnesses, and just how much they effect SO MANY lives in so MANY ways!!!! I will try to put some thoughts together by tomorrow and post more......


When you have a person look "down" at you for parking with a "handicapped sign" or they are staring for any other reasons, usually several that is just ONE aspect of how chronic and invisible illnesses can "haunt" your daily life,


I have people in disbelief that I have had so many surgeries, or that I have Lupus, Sjogren's, and RA.... well NO I do not look SICK all the time, but they also do not see those days and times I am unable to get out of my home, or even do much of anything i my home, but sit on the sofa and watch movies with my pup.

I, in fact lost my Pug, this past week Tazz. It was extremely sudden an unexpected, and she did not even appear to be sick, until it was too late to truly even find out what caused her to be ill. We assume, it was her heart, and it gave out on her, after 13 years of being my precious "baby girl", my friend, my companion, my all, my everything, and giving me an unconditional love that no one else can really give. Thank goodness I have her "brother" who is about 7 years old, Bubba, I call him Bub's, who also misses her and I know he is confused as to why "sissy" is not here. But, we have one another to lean on and that right now is my saving grace. As I hope tomorrow will END a very long drawn out situation that has created chaos and havoc in my life since March 2014, then I pray that something that appears to be half way "normal" shall come to light.

I hope to be able to get back to blogging more, my advocacy and activism, & helping others fnd their way through the often rocky climb and confusion of "invisible illnesses" .... They cloud our minds, our hearts, our souls and our lives... and I hope I can help others to find their way out of that cloudy, insanity of being chronically ill, and often many not understanding it all....