Delving Into "hopefully" a New Outlook on Rheumatic Illnesses & finding Ways to get the word out to Others... Possibly a New BOOK, A new "Non-Profit" to be active with, and a "new attitude" for myself "Relationships" Chronic Illnesses, and Life

I've been basically "drowning" in my own sea of dispare over the past several months. TODAY being the 1 year anniversary of my Mom passing away, of course makes things even a bit more "difficult" to hold my head up and move forward.

I have a close relative that talks often about "being lonely" and is alone. In other words right now there is no "one significant" other, and I totally relate. My situation is much the same. The only "significant" other for me, is Peanut, my "Holi-Terrier"... as I call him! :)

So, I get the times that you wished there was someone there to talk to, to go to the market with, to go out and grab a bite to eat with, someone to be with you when you go through tough surgeries, or doctor's appointments... and just basically someone to "share" life's up's and down's come what may.

After my last "breakup" I told myself, I would NEVER "commit" again. I feel as if there are basically "3 strikes" against me as far as very long-term relationships, and for me, that means I am just not cut out for the "relationship" thing anymore. Possibly I was NEVER cut out for it, but I was damned and hell, that I would NOT give up! Thus my 3rd one, I thought was for "infinity". Well, NOTHING here on this Earth is for Infinity! One way or the other ALL whatever it be shall come to an end.

I've given much thought to either venturing out on my own, to a club, and I tried the church situation for awhile, and I need to get back to going. After I had all of the problems with Mom, then me and my own surgeries and so forth, I just had to stop going for awhile, until I was well. Furthermore, I really feel badly stating this, but although I was a "new member".... not ONE PERSON ever even bothered to check on me, or see why I suddenly stopped coming. This is after I had "joined" the church. Frankly, since I was actually ill, and had surgery etc. it really hurt my feelings that not one soul bothered to check on me. Besides, I (and maybe it was just my own stuff) but felt like my "tidings" were not "enough" weekly. Yet, I was giving what I felt the Lord asked me to, and also being with only my income which is very low, it was as much as I could give at that time.

Anyway, not to get too deep into religion, but it left a bad taste in my mouth. Yet, I will go back, it maybe that I go to another church, and not back to that one.


I have long been a follower of "Creaky Joints" a Non-Profit started by Seth Ginsberg who himself developed a Rheumatic Illness in his 20's. Like many of us, he found there was just not enough information out there for patients and caretakers. Actually in many ways there was not a great deal of information back just a few years ago for the medical profession. I was shocked to find out how many nurses, and even Physicians knew little about some of the autoimmune illnesses, and many tied into RA, Lupus... things like Sjogren's, Raynaud's, and MANY other AI illnesses that are "joint related" yet also effect other parts of the body.

At times I felt as if I was "educating" my own doctor. So, Seth opened his mind, his heart, and his talents to begin "Creaky Joints", which recently began a new program and app actually called "Arthritis Power". I just recently got it to download on my phone, and I have it open on my computer.

As I begin the "journey" through it, I hope not only does it help me, but it gives me the
"heart" to once again write on my book, and get myself advocacy back on tract. After the ordeal with my Mom in 2016, and then her passing away only 6 months after showing signs of "Lewy Body Dementia", it was quite a shock for me, and my family, friends of the family and other family members.

So, rather than ponder this "lonely" phase in my life, after talking with a wonderful woman on the phone earlier this week, that is a part of "Arthritis Power" I was inspired to try and give myself a break, and find that "voice" that can take me wherever I want to go, whether writing, blogging, being more involved in the advocacy, activism, and Ambassadorship roles that I so love being a part of.

So, here below are a couple of links. You can go to these and find out more information about "Arthritis Power" and "Creaky Joints".....

https://creakyjoints.org/

https://arthritispower.creakyjoints.org/

http://www.pcori.org/

Patient-Centered Outcomes Research Institute

https://www.uabmedicine.org/

University of Alabama At Birmingham

"PCORI" and "UAB" both sponsors of "Arthritis Power"

WEGO Health Blog Challenge for November 2016 Day - 16 - What kind of suggestions I may give to others who are starting out as "Activists - Advocates - Volunteers

" What Kind of Advice I May have for those who are starting out in the Advocate, Activist Role and are "Rookies" wanting to know a few tips."

Wow, that is a very great question! I wished I had "asked" more questions when I began my ongoing pledge, and began down the road of activism, advocacy and being a volunteer when it comes to just about anything involved in the health field. When it is a chronic health issue and/or chronic pain, there are SO MANY websites, blogs, non-profits, articles and more that can begin you on your journey.

Yet, here are a few things I've learned and "taught myself" along the way.


Try to pick "one or two" illnesses, health needs, healthcare related issues, such as insurance, medications, physicians, and so forth. I am the type of person who wants to "do it all", "be in it all", help everyone, be there to assist everyone I can. I found out very quickly, especially if you, yourself Are "Chronically Ill", or are a Caretaker of someone ill, that you can definitely be in way "over your head" and in burn out quickly if you try and take on too much at once. So, try a few different avenues, such as being an advocate for a certain group, such as Diabetes, Autoimmune Illnesses (RA, Lupus, Sjogren's and so forth), heart diseases in women, children's health, becoming a blogger, posting on Social Media, on Facebook, Twitter, Pinterest and such. This may help you find your "niche'".

You may prefer to do "drives" such as the "Jingle Bell Run" for the Arthritis foundation, in many major cities across the nation, or one of the other drives, many do walks and runs, women's breast cancer, heart problems, other cancer's. If you are good with people, then you may find helping to raise awareness AND raise MONEY for one of them, could be what you feel good at.

Write! Tell your story! If you are chronically ill, you maybe already on a Facebook group, or one of the Foundations's groups, where you can tell your own story, which often helps to inspire others.

That is the ONE thing that I found out of everything I do in my years of activism, Ambassadorship and Advocacy, is TELLING MY PERSONAL STORY, either on a social media site, or possibly at a group in your town or city, or even in your newspaper. Get your own experiences out there, Those help others to see they are not alone. They have people that DO totally understand, and can support them.

Often now many of the non-profits go to a "Summit" Annually making a trip to Washington DC, in order to tell their stories to CONGRESS! We need Congress on our side for helping with medications getting passed possibly, or funding to get a new medication researched, or raising awareness of just how many people are ill, not working, and are so ill daily they are not able to cope with a job, and YOU are the ones that NEED TO again TELL YOUR STORIES TO CONGRESS!!! Those stories are exactly how we get the government, whether, local, state wide, or National, and make them understand how crucial the help and role the governments play in assisting non-profits, can possibly help others to feel well enough to work, to someday find a cure, or even STOP THE ILLNESSES, BEFORE THEY EVER HAPPEN!

So, above are the few things I've learned about getting involved, remembering you are not a "super-activist" so you can't do it all at once, then find your niche, and off you go in search of all of the help and awareness you can get in the activism direction your heart desires.

#HAWMC

WEGO HEALTH

 

WEGO Writers Challenge April 20th, 2015 - Reflection... Your ambitions, hopes and how things have came together for you - Reflection from Life, to Chronic Illness

Each of us, no matter whether we are an activist, voice, Ambassador, Volunteer, all have some set of "what we hope to help do, and what we feel we may gain from doing those particular activities.

Whether you give out lunches in your home town daily to the elderly, or you have a blog that is all about how you want to help others through horrendous illnesses, whether it be mental, physical, or emotional... for the most part, when do you any type of event that is "volunteering" it comes from within your heart and soul.

Most of us "expect nothing" back. We don't expect a "pay check". For many of us, notoriety, fame, being "patted" on the back is really nothing we feel is necessary. We "GIVE" because that is what we want to do. That simple act of "random kindness" gives us feeling enough inside knowing we did something "extra" for someone's day. Maybe that door you held open for someone behind you, helped them put a smile on their face, in the midst of a terrible day. That "E-card" to a friend who is ill, who maybe overwhelmed, who may be feeling like life is a bit too much, and their comes that special card, just when they need it the most.

So, reflection back on my life and all of my "volunteering" even when I was 13 years old and was the only "Candy Striper" at the hospital at that time. Those days there taught me so many valuable lessons about life, people, the medical field, and gave me a chance to give of myself freely.

From there, whether it be a shoulder to cry on, a friend needing a lift due to their car being on the blink, sharing a cup of coffee with someone upset, just telling the checker and the guy doing the sacking at the grocery store, "Thank You!" and that you appreciate their help.

I've had to "overcome" some issues when it comes to I guess you might call it "pride". Before I had all of the joint issues, surgeries, Lupus, RA, and so on, I usually took out my own baskets from the stores. It was just something I did, and of course many of our stores now don't even offer the service. Fortunately, our local grocery store that is here in Texas always offers the assistance, which is a good thing. I know for the elderly people it is a huge help, and when I am having issues with my back, or joints having had surgery, or just not feeling well. It truly does help to have someone take the basket out and put your groceries in the car. A great example for me just a couple of days ago. I noticed our market was really busy. They were trying to keep up with checking and getting the merchandise sacked. So, at first I told them, don't worry about it, I will just take it out myself this time. Well, I should have allowed them to. First of all, the way the parking lot is designed, you are on a slight slope as you come out of the store. Of course that makes it a bit easier to push the baskets. But, when I have a huge bill of items, or heavy items, that basket will try and "run away" from you outside. I had a gentleman that had his two young children with him, stop and help me hold the basket that day. I was so elated to see we still have some awesome people in this world. I commended him with a huge thank you, and I also commended him for having his two kids, and they were younger children with him at the store. Often times, you don't see as many men with their younger children especially at the store. So, it was just an all around "thanks" for everything I witnessed there within a few moments of this gentleman.

So, whether it maybe reflection on advocacy work, or having someone help you out when you least expect it, for me, my reflections are on those that do some wonderful things and their not expecting a "thank you" for it.

My "hopes" are that I also continue to "share" a helping hand or a thank you.  My goals are to become that "author and writer" of a book that truly will help others. Some of those things have suddenly within the last weeks came together.

Then there are many "detours" that come along, unexpected, that can delay all of those ambitions, hopes and what we feel we truly need to accomplish in our time here.

The chronic illnesses of course have all too often caused a delay in some of my goals, dreams and wishes. In fact, there are some of those things, that I may never be able to do again. At times that really bothers me. Yet, I also try and look back to remember when I DID do that thing, or I DID get to go to that concert, or vacation... or something as simple as now I am looking forward to being able to get away for a night, and have my Mom and I take a couple of hour trip to the Casino and possibly spend the night.

I also hope that my own health will hold out, so I can become a better advocate, activist and an Ambassador. I hope to be able to go back to Washington DC next March and once again "give voice" for ALL of us with these horrid arthritic illnesses.

I can also reflect on the facts that I feel I've "built" a very good repoire with the "non-profits" that I advocate for. Or really I should say I feel they have truly "taken me under their wing" and given me some amazing opportunities to be the advocate, activist, Ambassador and Volunteer that I want and will continue to want to be. So, I say a huge "Thank You" to all of those that are so incredible in the realms of health and helping others. 

#HAWMC

How "Autoimmune and/or other Chronic Illnesses" seem to "slow you down to a snail's pace"

Lots going on here, there and yonder...mmm one of those "Texas" words "yonder"??? I have people especially ones in California ask me where "yonder" is??? Well, in TX, it usually means in the direction you are pointing! LOL!!! New word for today....  "lollop"... to "loll" around for short... or to be a bit in a lounging position and it can also mean to "bob" up and down.... I had heard this one and have used it so not really "new" to me, but it puts it in my head to use it more... I am in the process of finishing paying bills, cutting out coupons, and trying to NOT feel BAD!!! I woke up about 4 am with the worst headache, and my stomach was upset.... plus I just have no energy for some reason... and of all days... even though it is sunny outside, the wind chill has to be COLD as heck! Oh, another word I had tried my best to think of last night, and I could recall several words that kind of meant the "same" as what I was trying to come up with. Finally I got the Thesaurus out and looked up "neutered", "watered down" and so forth. Then the word I was looking for hit me... CENSORED... I think something due to me NOT censoring my writing there are times some may get offended by what I say. Now, don't get me wrong, I am not going to poignantly come out and write something meaning to piss someone off or upset them on purpose. But, if I begin censoring my writing, it is no longer what I want to say. It has made me wonder why I don't get as much traffic to my blog as I want. I realize that "links" back to other sites help immensely, to get your rankings up as far as SEO goes for sites and search engines. But, it is not even "strangers" that maybe "googling" a certain type of blog, or illness, and then they come across a link to my blog or facebook page etc. It is more about wanting ALL of those that spend time here at Facebook, Google Plus, and other places they may find out about me being a writer and published author that I am interested in. I seem to never get feedback. No matter if I write about my own health issues, about the other places I am a strong voice as far as advocacy, activist, and ambassador on, or if I am talking about my own latest catastrophic event of the day, I never get many replies back, or more comment is what I mean on the blog in itself. Does that mean people don't like it so father than say something tacky to me, they just don't say anything at all. Or is it I do hit the nail on the head for many, yet they just don't find it necessary to submit a comment on whatever subject matter I may pick for the moment. Well, unless something ridiculous happens this year of 2015 I plan on posting MORE blog posts, and working on both books daily, as well as learning a new word, getting back to my exercising since I have kind of flaked off the past several months. I do lots of running around since Jim is not able to go out, or clean, cook etc... so I get lots of "exercise" with all of that, but I need to be back on the stationary bike, out walking daily or trying once again to use my stair climber. Me and that thing have hell, but it is mainly because my feet want to slip and slide all over the place. That does make it difficult to exercise on when you are constantly having to reposition your feet.

Okay, I have done a couple of the "new" items on the agenda, and I stopped a moment to say hello to all. It is hard to believe the holidays are already past, the new year is here, and once again it is back to the "farm" to hitch up the mules, put the crops in order, get kids back to school, and put noses to the grind stone hoping for a better 2015 for many of us.... take it one step at a time, one breaths space at a time, one day, one week, one month... all at a time... slow down, stop. and try your best to "accomplish" something even if it a new word daily, that you can be proud of for 2015... read a book, write a novel, crochet, paint, learn to play an instrument, go back to college, or just spring clean your home and throw away everytthing that has NOT BEEN USED in a YEAR! I have figured out, if something is lingering around my home, whether in my closet as clothes, or dishes, or whatever might be "building up" and not being used... throw it in the recycle bin, take it to Goodwill, give it away, have a garage sale, but take your home to an entire new level... for me that does mean a great deal of getting rid of stuff that is just that stuff that sits around and is either already worn out, or I will never use, or was meant to do one thing or the other but I never got to it... and I am bound and determined, that I am GOING TO PAIN MY KITCHEN and have a new floor put in. IF it "hair lips" Harry as the old saying goes - actually it is "if it hair lips the Pope"... and I am not sure why, but that is how it has been said for eons... I already have colors picked out, and they have an already "pre-cut" cabinet top that is not all that expensive that should replace mine hopefully quite easily... so my hopes are that at the very least I get a "new updated" kitchen, floor to ceiling, and we get the outside of the house painted... of which I can do most of it myself, but I am just so slow, it will take me quite awhile by the time I sand down all of the old paint (Lord I bet there are 5 layers of old paint) on my cabinet fronts. Someone before us never scraped or sanded anything. and then when we got here, it was a hurry up, had our lease on our apartment ending, and did not want to pay another month's rent if possible... so there were somethings we had to kind of just "do half azzed" at the time, in order for us to move in that fine Winter of 2006, which we almost froze our butts off... Lord it was a cold winter that year. Jim was redoing our hardwood floors, and we were concerned about whether that coatings would dry on them fast enough for us... we really needed to scrape those cabinet fronts and doors, but time made us just get it painted and cleaned up so we could get moved in... wow, how the heck we made two huge moves, including coming to Amanda's wedding the Summer before we moved here, then Dad's funeral at the 3rd month of 2005, then we made the major move to San Pedro CA, and withing 3 months were on the road again for a long haul to Ennis....we got here on December 19th, 2005... Amanda had just had James on the 6th of December, and they all came up, well at that time it was Heather, James a new born, Amanda and Jimbo, then Jason and Danielle I believe both came over... I know Jason did... anyway down memory lane... due to me knowing what I could get accomplished then, compared to how long it takes me to accomplish anything now... is like a very long, long distance... Anyway, off to take meds, eat a bowl of cereal or something, and possibly get some writing done.... ;) ,

Covers I am working on for my Two New Books

The Arthritis Foundation and Our "Victory" from the 2014 Summit!

I am so elated to know my "voice" was in part what made the "Summit" on Capitol Hill a Success Story for Us as Patients, Caregivers and more, along with such an Amazing Success for the Arthritis Foundation!!!!!

http://www.arthritis.org

It is with pride that I talk about my own personal story and share it through the Arthritis Foundation. I know in my heart they truly care about us as patients. I am so pleased to be able to help out. I am also so proud to be in a very "elite" group which is the "Platinum Ambassador's" for AF!!!!