Showing posts with label American Heart Association. Show all posts
Showing posts with label American Heart Association. Show all posts

Wednesday, November 16, 2016

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.



Saturday, August 29, 2015

Updates on my "Lumps" cellulitis, Surgeon, Removing the Lumps, RA, Lupus, Xeljanz, Mom' injections - my RA giving me mortal heck with my fingers, hands, wrists... & more...

A quick note - I am BACK on BOTH Rifampin and Bactrum now for the FOURTH time! I did FIND a Surgeon Finally that takes my insurance! But, he could not get me in until a week from yesterday, so next Friday! In the meantime, the 1st LUMP began to show "outer" signs of "infection I thought. It was NEVER red or all that sore through the whole ordeal. But, last week about Monday, I began to notice not is it only reddened on the top of the skin, it is also, seemingly "puffy" and sore to the touch. The "smaller lump" is now also a bit larger, but also sore as heck to the touch. In fact just walking sometimes makes them feel tender and sore. So, I called my PCP yesterday and he put me on another round of antibiotics until i can get into the surgeon.

ALSO, some GOOD NEWS FOR A CHANGE! My ECHOCARDIOGRAM came back with a "small bit better as far as my heart function from the last one" which I've not had one since 2011... and I was scared that it might be a bit worse, so hopefully that is good news... but you also hear all the time of people having their heart checked out, having the echocardiograms, ad all seemingly well... then a day or so later, they have a heart attack... so I am trying to stay within the "positive" aspects... also I finally got the CHEST X-RAY!!! I thought that mess would NEVER get straightened out...but it is done, and the report should be at my Rheumy's office early next week. SO, my HOPES are that we go ahead with the Xeljanz BUT I don't think they will put me on it, until we know for sure what these lumps are... if infection, then NO until it is completely gone... and hopefully - due to my RA, being more severe than ever, I am losing a great deal of grip, fingers are so stiff, and visible swelling in my hands and some in my wrists and ankles... along with pain, that had not been this bad... but I have not taken any Orencia now in 5 weeks... still taking everything else... but I fear the Orencia also due to not knowing what these lumps are. Also, my MOM celebrated her 80TH!!!!! Birthday yesterday!!! But, she is having heck with her stomach... we did have a "bug" a few weeks ago... but hers seems to be something else... so we did not even get to go out and eat, and I so wanted to take her for at least the day to celebrate... but she is just not up to it..... Okay more later.... ;)

Thursday, May 7, 2015

RA and The Chance of Heart Attack Doubles with the Disease

Study: Rheumatoid arthritis nearly doubles risk of surprise heart attack - Since I've has 2!!!! Already One at 40 and another one at 50- I don't want a repeat for sure. My first one at 40 years old, my doctor told me then my chances of surviving a 2nd on were not good at all. So happened I was in the hospital in Dallas when I actually had the 2nd one. Or I may not be writing this today... my Rheumatologist always reminds me of just how high my chances are since I've had 2 already and now to have RA, Lupus and so on, that makes my risk extremely high... I do all I can to "help" avoid one. But, that was how I was BEFORE the first one! I was only 40 years old, I was in great shape, walked 5 miles daily, along with other types of exercise, I ate as healthy as anyone could, my cholestral was not high at all, my blood pressure was under control with medications... so you would have thought I would have been the "poster" person for NOT having a Myocardial Infarction. Yet, I did. My doctors back then had not discovered my Autoimmune issues. Had they known, they may have blamed it on that. But it was another 8 years before I was diagnosed with RA, Lupus etc. My 2nd one, at 50, I had been extremely ill. In fact, we just talked about that a day or so again. The doctors here and in Methodist hospital in Dallas, never really KNEW What was "wrong" with me. They blamed it partially on a nick in my liver from a gallbladder surgery I had in Ennis. But, then they kept telling us that I had a "collapsed bile duct"... whatever was going on "poisons" from my system were literally pouring into my abdominal cavity all around my internal organs and so forth. I continued to get more ill by the day, and after SEVERAL surgeries, they had hoped I was out of the woods, and improving. I went for over 6 WEEKS that I could not eat one bite or take a drink of anything. They had me on a liquid "nutritional" bag of "white liquid" and that was my "food" for weeks and weeks. About the time I began to be a bit better, and more able to be "coherent" - they were trying to send me home with all of these tubes running out of my side and I was not even able to really eat yet... so I got what they thought so totally "heart broken" over being so ill and feared coming home at the time, it caused a 2nd heart attack. Fortunately, I've avoided any type of surgery and I don't have any stents at the time, so far. Medications continue to control it, but believe me there is not a day that goes by that I don't think about "what if".... so never take any symptom pf an MI lightly. Even if your "young" 30's or younger, it can happen.....

Friday, February 6, 2015

"Go Red For Women's Heart Association" Today is the National Wear Red Day!