Wednesday, October 7, 2015

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...

Sunday, October 4, 2015

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

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????

Monday, September 28, 2015

#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 -




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!

Sunday, September 27, 2015

#RABLOG DAY 6 - ONSET OF ILLNESS

Every person, male or female, whether that are our youth of the nation, or our 30's through 45 generation, and then from there 45, 55, and more all FIT into a Autoimmune, or arthritic diagnosis; OR as for myself as well as many, have had several different diagnosis and it changes depending on the way the "wind blow" so to speak!

In other words, age, gender, nationality, none are "immune" from suddenly and unexpectedly to hear the words, you have Rheumatoid Arthritis, and/or Osteoarthritis, which often plays into one another.


Honestly, I had suspected some type of autoimmune illness with me, probably 10 of more years before even really getting "tested" for them. In fact, it was my current PCP, who had just moved to our community from East Texas, and he is as sharp as a tack. I was one of his 1st patients, and from day one I was "hooked" with him being my PCP. AFTER, I already had several arthroscopic surgeries on both shoulders, my left carpal tunnel surgery, and the went through two total knee replacements, along with all of the various reasons I had been in to see him.... he told me he was going to run a huge "battery" of lab work on me. Some of it may take weeks to get back but I already had mentioned "autoimmune disorders" even before we began the lab work.

both of us were right, when those somewhere around 18 TUBES of blood they took from me finally were all processed, the findings were a direct autoimmune issue(s)...

From there it was a whirlwind of finding a Rheumatologist, and my 1st one, Dr. Rosenstock in Duncanville, as elderly as he was, turned out to be one of the best Rheumatologists I saw back then.

He was about 80 plus years old, and in fact, had a stroke not long before I went to see him. But, he took a very good once over of me, and told me, my toes, and fingers/thumbs, and other places especially where joints were showed signs of damage. He also told me I had Raynaud's, and I had a "hyperflexibility" of my joints, which also causes joints to be "over used" because they tend to go further back than a joint that is normal. I felt I had "undifferentiated autoimmune connective tissue disorder" and felt like as time went by I would be diagnosed with Lupus, RA, Sjogren's and so forth.

He was correct. But, as much as I appreciated him and truly felt he was an awesome physician, he was "old fashioned" and did not believe in "biologicals". In fact he still gave "gold injections".... which were used for a long while before many of the other meds became to help with these AI illnesses.

So, I went through an emotional, mental and physical battle trying to find a good Rheumatologist, and it took going through about 7 before the right one finally appeared. He has been taking care of my RA now for about 7 years or so.... and in actually my PCP takes care of my Lupus, mainly due to him being right here in town a few minutes away, and he can see me immediately when I am having a bad Lupus Flare....

I went through almost a grieving process.... first I was so totally forlorn, then I did not want to believe it was true, and then I was just angry about all of it.... insurance, doctors medications, pain doctors, then surgery after surgery all due to the deterioration of my joints due to RA/Lupus and osteoarthritis... and yes to boot, I have osteoporosis, which adds to the "fear" of all of it.

In time, and at times, first I kind of settled into the fact I was chronically ill, and in chronic pain.... yet I still fear certain symptoms and so on, just to me having several very critical times within the time of being diagnosed with RA and so forth....

I had hoped with time, I would regain more "life", more energy, more things that truly would make me happy, yet, I can day I am "not full of life" as I once was.... and all too often days are a struggle in one way ot the other.....












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....

Saturday, September 26, 2015

A bit "Off subject" But I have to share some wonderful News!!!!

My Granddaughter is a SENIOR this year down at Agua Dulce
High School which is close to Alice TX and about 30 minutes fro Corpus.


She is an amazing young woman. She has played Volleyball, Basketball, been Cheerleader several years, and more. She also was honored to be inducted into the National Honor Society, and I believe her plans are to be in the medical field.

They had their Homecoming Last Night like most High Schools did and she got to be DHS SENIOR 12016 Football Sweetheart!!!! I am so totally proud and thrilled for her.

She has worked hard all through school to keep her grades up, participate in lots of activities and be ready for college which will be here before we know it!

So, before doing my next Blog Post for the RA blog, I wanted to share this news and a few photo's my daughter had of Heather and some of the other Seniors and friends,






Friday, September 25, 2015

#RABLOG Post WEGO Day 5 - Your Favorite Exercise and How to try to stay in Shape

For a huge many of us, even those without Chronic Illnesses, joint problems, RA, Diabetes, and the list goes on, we DO HAVE problems finding the proper exercise that fits into our "health problems", that gives us enough exercise to get the heart rate up, curb the fat intake, and keep muscles in tone, and help to keep our bones in much better condition also.

I have to admit, all the time I was in Jr. High and High School, I was never one for working out, being in Volleyball, playing Basketball, or playing in Little League. Throughout the most of my younger years up until about the age of 21, I had a weight problem. I was not just hugely obese, but I did have more weight on me, than someone with my build and height.

I also had actually while playing baseball with my friends and cousins at the age of about 14 years old, was used for "2nd base" rather than the base itself. I had a very severe tear of cartilage in my right knee. It got bad enough, that I could not participate in any type of PE classes, and that next Thanksgiving Holiday weekend, when I was about I guess 14 or 15, I was in Baylor Hospital, the children's wing for Orthopedics.

I spent 7 days in the hospital after having a very huge surgery at that time (it meant cutting along the inside of my knee and the scar was about 8 inches or so long. In fact my Dad came and ate Thanksgiving Dinner with me, since everyone was at my Grandparents having a feast, and he dd not want me to be alone. The funny thing was, they brought 2 huge plates with all of the Thanksgiving fixings on them. But, they accidentally left the slices of turkey off of mine... it was so funny! But, that right leg, was in a full cast that as from my toes all the way up to my hip as far as they could get it. I was in that hot thing (thank goodness it was Fall/Winter, for over 3 months! My Orthopedic Surgeon, who did work on the Dallas Cowboys at one time, did an excellent job. They had done a special type of scan the night before, and he feared I may have some type of a tumor in my knee. He was not sure exactly what it was, thus the morning they rolled me into the huge OR, I had been told, I may come out and not have all of my leg left. If it was "cancer" then they would have to remove as much as they could in order for the cancer to not spread.

I came out fine and the "lump" formed due to the damage in my knee. In fact, before the surgery it had gotten so large that my muscles on the side of my knee would "jump" over that lump. So, I spend 3 months at home, no elevator in our old 3 story, plus a basement high school. So, Mom and Dad picked up my books, and lessons, and then turned them in for me each week.

But, that one incident put me on the road of having to be cautious the rest of my life about what type of sports I played in, or anything that I may put a large amount of stress on that knee.

I went ahead to snow ski for several years in my late 200's and early 30's. I became an AVID walker, and walked at least 5 miles a day, 6 days a week, and sometimes 7 days a week. Then as the years past, the lawn work, gardening, even snow skiing had to come to a halt once I was diagnosed with SO MANY joints in bad shape. I had a left elbow and shoulder surgery in my early 30's. I also had the left knee with torn cartilage and had to have surgery on it. Then I had rotater cuff tears, in both shoulders, a couple of times, thus I had arthroscopic surgery on those at least 2 or 3 times each. Then I needed both wrist fixed, both with carpal tunnel, and chose to have the left one done, then so many other things developed, that right wrist was the least of my worries health wise.

This was about the time my PCP after seeing me for months, following all of my joint problems, labs that came back "odd".... he did a total screening for ALL types of autoimmune illnesses. His guess was right on the money. I had RA, Lupus, later came Sjogren's, also Raynauds. I also have Degenerative Joint and Disc Disease which also contributed to more surgeries, than I could even count.

In 2007, if my memory serves me, I had 8 SURGERIES, that one year! Finally ending with both total knee replacements, then after several scopes, I had a complete "reverse" shoulder replacement of my right shoulder. I've had gallbladder issues, and had that removed, and in which complications sent me quickly to Dallas at the Methodist hospital, where I spent 6 WEEKS, and they never really "got" exactly what was wrong, and at the end of my stay, I had a 2nd heart attack, before leaving the hospital.

I've had to have a 4 level cervical spine surgery, replacements and fusions, my hips have been injected with corticosteroids numerous times. I recently had DOUBLE hernia's that required surgery, and in the middle of all of that, I lost ALL of my teeth to Sjogren's. It took over a year to get the bad ones out all the way and then get my dentures in, then wait to have the bottom ones "mini pinned" in.

So, after all of that I am sure you are wondering what the heck does that have to do with my "exercise" program now?

Now, I walk daily. Whether it is outside, around my long driveway, or around the house looking things over and making sure all is okay. I also try my best to do ALL that I can on my own at home. Whether it's vacuuming, doing laundry, cleaning the floors, cooking, cleaning, errands, some light gardening in the cool mornings or late evenings. I have a pedometer that I try to keep up with my "up" times. And I've found, as far as keeping in good shape, physically, mentally and emotionally, just being outdoors, looking at the trees, birds, waving at the neighbors, and so forth those are my ways of staying in shape.



I even cut smaller tree limbs when I can, or put leaves in a pile and use the trash can lid to help scoop them up. As I said, I have learned to "improvise" in many ways, yet the challenge of opening a jar lid, or getting on a chair or stool to put things in the upper pantry, or whatever the task is, if I feel like i can at least do some of those things, the less I feel depressed, I feel even though fatigued, especially if I overdo it, yet it is often a "good type" of tiredness. 

So, whether I am outside trying to clean flower beds, and walk all over my small bit of land in the back, or make 20 or 30 minutes around the driveway, to keep I am less stressed, more energized, and I feel at the end of the day, I have "accomplished" something worth while that day.






                  #RABLOG



Thursday, September 24, 2015

#RA Blog Week WEGO Day 4 - 5 things I have learned About Myself since Diagnosed with RA

Another great subject to ponder! What 5 things I have learned having Rheumatoid Arthritis?


I am sure MANY and/OR ALL of us, could state many, many more than 5 things we have learned over the course of days after you are diagnosed with RA.

I've learned that even through all of the fatigue, all of the complications, medications, turmoil, the "loss" of what a normal life had been before RA was for me, that I am MUCH STRONGER, and I can DEAL mentally and emotionally with ALL things than I used to think I could.

I can "handle" helping my Mom, running errands at times, shopping, and all of the usual things we all need or must do in a day, week, month or as the years go by.

I also have had to "deal" with a new normal. I've not been sure if I could truly deal with all that having any chronic illness and/or chronic pain when I was diagnosed. I cannot DO all as I used to be able to. I've had to give up many things I loved so much. Going on an all day shopping spree, and maybe just window shopping, but I was able to go, and then come home to get ready and go dancing, or out to eat with friends.

I no longer CAN do those things, but I have found out that I can live with NOT doing some things, yet I've learned new things that now can occupy me, like advocacy, activism, and being an Ambassador. I learned how good I am at being in the realms of helping others go through what I may have or are going through too.

I've learned that there are BILLIONS of places online to get information, do research, and find out any and everything you want to learn about your health issues. But, I have learned to "watch" carefully some of what I see. NOT ALL of the information out there in Cyber Space is true.

I have to learn how to give myself injections. I also have had to learn "where" and "where not" the lab people can "stick" me to draw blood. My veins are tiny, and have lots of "valves" in them (something else I learned) thus I have about 3 places that they need to use (if they will listen) or I have to be stuck several times before they can "hit" the spot.

I've learned how to improvise, and find different ways to open a jar lid, or a can. I've had to make sure I take enough reusable bags into the market, so they are not too heavy for me to carry. I've learned to "ask" for help, which is so difficult for me to do. I just dislike having to ask anyone to "help" me, yet I have learned at times someone else has to do it, because for one reason or the other I can't.

I could go on and on about what I have learned, think about, and also cherishing each and every moment of those that I love and hold dearly. Time is truly precious. This week for me has proved that 50 times over for sure.

http://www.radiabetes.com/leading-prompts-for-rablog-week-as-of-august-18-2015/