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/

#RABLOG WEGO 3rd Day of & day Blog Week - Telling Someone about Your RA


You may have heard someone talk about having moments where they feel as if they are "looking down" on themselves, as if they were watching their life, yet did not feel they were really living in it?

Or have a feeling of being "detached" from the world and everyone around, as an observer, rather than participating in the goings on in daily life...

This can be known as a mental disorder, if it is always going on. If a person feels always detached from living, like it is a "cartoon" or perhaps you feel not seen nor heard but you can watch from above and watch life take place.

In The Psychological World it would be known as "Detachment Disorder", one of the Personality Disorders people can have.

Well, in a way, this is almost what it feels like to have a chronic illness such as Rheumatoid Arthritis. Especially in someone that may be just diagnosed with the disease, or has not had a great deal about RA explained to them, or have not had the time to research and find out more how RA effects the body, plus the mental and emotional realms of daily life. Often I've felt as if no one else could ever "get it". They could not possibly have an inkling of what I felt. I felt all alone, and almost like I had something "mentally" wrong, as in having some type of personality disorder such as this.

At first, I could barely understand all of the ins and outs of what RA can do to the body, plus it can have dramatic effects on just how you feel about living with it. You can often feel physically so lousy, thus you do not want to see others, or try to explain to them what RA is all about. FEAR, ISOLATION, feeling that you are ABANDONED, that your loved ones may think you are lying, or that you are just making all of this u[p to get attention.

Embarrassed is yet another part at times of having RA, and/or other chronic illnesses. You do not want people to look at you like you are sick for if they see you as "RA" the disease, it maybe they "feel sorry" for you, or think you can't do things with them again.

Each and every emotion that you feel in "grieving" you can also feel in RA. Angry, frightened,depressed, thinking it is wrong, you cannot possibly have such a horrible illness, resentment, trying to even "bargain" with Your Higher Power asking Him to take this away from you, or asking WHY ME?
WHY do I have to be SICK?

Those and more are all of the "feelings" of RA for myself. At one time or the other, I've felt each of them, and at times several of them at a time.

I even sometimes feel like a "lab rat"... I guess you could medication might" stick and make you feel better. But, you may feel better in one way, then suffer from side effects that are worse than the RA itself.

You often wake up aching, throbbing, in several joints, and some days all over. I find it difficult some days to even think about needing to do some things I used to not even think about... cleaning, dusting, running errands, going out on a weekend. Yet, with RA, you have these feelings of what do I HAVE TO DO today, and what can I postpone until the next day? So, you slowly wake up, try to begin to move around and for me, then I go straight to the morning medications, taking them hoping that some of the fatigue, the pain and stiffness, the brain fog, and other symptoms will at least lessen enough for me to get through the day and do what I need to get done.

To have RA, is like having your life turned upside down, and then having to learn how to have a totally "new life normal", for all that you did have that was normal before RA, for the most part has totally changed.