Are You an Advocate for Your Own Health?

 

For our new Masquerade of Words (Spondylitis Blog Carnival)'s (MOWer's) our first blog topic has been chosen...the first is "The Definition of a Health Activist."  This is an extrememly interesting topic for me because I am not only a patient with multiple illnesses, many medications, who has had numerous surgeries, but I am also an RN. I have been on both sides of the hospital bed, if you will. I have been the one providing the care and also the one receiving the care. I have been advocating for myself and advocating for all my patients. It is extremely important that you advocate for yourself because you cannot always count on the fact that others will advocate for you. If you have a close friend or family member who will also be a patient advocate for you, then that is even better. And of course, if you are lucky enough to have your physicians and healthcare providers also as your advocates, then you are one of the exceptions!!!!

The most important thing to remember when faced with a health crisis is to be an active part of your healthcare team.  All decisions must be made WITH you not FOR you! You must educate yourself about your illness and all your treatment options. By being an active member of your healthcare team, you are sure to see results and improve.  Begin by researching your illness so that you begin to understand what is wrong with you. One excellent site to begin is www.nih.gov (National Institute of Health). That site will also link to other equally helpful sites.  Remember that there is no one treatment that is right or that works for everyone. Every person is different and unique with equally different and unique needs, beliefs, cultures and spiritual values. 

There are several important factors to be considered when being a healthcare or patient advocate for yourself.  Curiosity may have killed the cat, but it can save your life!  Just as you may shop around to buy a house or a car, use that same spirit of inquiry to find your own medical care.  Ask questions and investigate!  Always, always, always seek out a second or even a third opinion.  A good doctor or healthcare provider will welcome your research.  Do your research carefully and choose your doctors ad healthcare providers wisely. There are many people who love and care about you.  You are very important to many, many people. Keep that in mind, when you think you do not want to do all the work involved.

Also, keep in mind that doctors and healthcare providers are human, and humans make mistakes. Do a background search on the hospital as well as the physicians you choose. You can contact your state's Board of Medicine/Medical Examiners for information on the physician at www.fsmb.org/directory_smb.html.  You can compare the quality ratings of the hospitals at www.ConsumerHealthRatings.com as well at www.HealthGrades.com, which are both independent sites.  I recommend, if possible, to choose a hospital that specializes in the care of whatever your particular condition is.

A federal regulatory body that governs all healthcare institutions which accepts federal funds--The Joint Commission on Accreditation of Healthcare Organization (JCAHO)--along with the Centers for Medicare and Medicaid Services started a national campaign to help

patients advocate for themselves and prevent medical errors: The Speak Up Initiative.

The Speak Up program encourages people to: 1. Speak up if your have questions or concerns. If you still don’t understand, ask again.  It’s your body, and you have a right to know.  2. Pay attention to the care you get.  Always make sure you’re getting the right treatments and medicines by the correct healthcare professionals. Don’t assume anything.  3. Educate yourself about your illness.  Learn about the medical tests you get.  Learn your treatment options and ask about your treatment plan.  4. Ask a trusted family member or friend to be your Advocate (advisor or supporter).  5. Know what medicines you take and why you take them.  Medication errors are the most common healthcare mistakes. (A wonderful resource to learn about your meds is www.rxlist.com. Learn this site and tell others). 6. Use a hospital, clinic, surgery center or other healthcare institution that has met federal guidelines. Ask about their Joint Commission rating on their quality standards.  7. Participate in all decisions about your treatment. You are the center of your healthcare team!

Remember, it is your right to refuse treatment until you understand what is happening.

Watch for the simple things like hand washing.  All healthcare workers must wash their hands before working with you. Stethoscopes should be washed as well. Ask your nurse to identify all medications before you take them. Have your doctor clearly mark the site of your upcoming surgery.  This is really important as mistakes are made every day. When you have a healthcare issue, your illness is too complex or the system is too confusing make sure you have someone who can help you through all the confusion. 

Remember to protect your rights and safety, educate yourself and advocate for yourself with all your medical providers. I wish you the best of health and will assist you in any way I can in your healthcare journey.

Be safe….ask questions!

 

My Bestest Friends!

When I found out that the next blog carnival with Chronic Babe was supposed to be all about my Best Friend, my first emotion was pure happiness, followed by excitement, and then anxiety. OK, you may be wondering why anxiety. Well...I can't just pick one!!! I have narrowed it down to Ang, Kelbi, Susan and Carlene. Each one of these people have brought so much to my life, have entered my life at different times,--perfect times actually--and each one of them is as strong of a woman (or Babe) as the next one!!!!


I will begin with Ang. I have known Ang since we were 6 years old. We have a bond that starts with both of us being Italian and Scorpios with birthdays in November. We both have always loved dancing and enjoyed the same music. We even just celebrated this likeness this week when we attended the New Kids On The Block concert. Yes, we are 36 years old! Don't judge!!! We had the time of our lives! We went out to dinner, split a bottle of wine--which for me is a rarity in and of itself since I don't drink alcohol because of my meds. We reminisced about being young and attending the NKOTB concerts when we were young. Ang is the type of friend that I can have a no-holds barred kind of fun with. She is also the kind of friend I can trust my deepest darkest secrets with. She knows me better than my own husband of 11 years. She knows how to bring me out of my lowest points and how to make me laugh until I pee my pants! She supports me when I fear no one else will. I can text her at 3 a.m. I can get on a plane and fly to her home and stay with her for a day, a week or a month because I need a friend, because I want to share my excitement, because I need a shoulder to lean on, or just because I want to take a trip somewhere fun--in a house with 2 kids to play with during the day and someone to watch scary movies with at night!

Ang is a special person because she truly listens when I talk to her. She doesn't pretend. She doesn't act like she understands if she doesn't really. She truly understands. She may not go through the same type of health issues that I am and have, but she has had her fair share. She does have some pain issues that I'm aware of. I know she has migraines that she suffers from often. She never complains about them. She may say she has one, but never whines or burdens anyone with her pain. She wears hearing aids because she lost her hearing due to Scarlet Fever when she was around a year old. I have never considered her to be different from anyone because she wears the hearing aids. She has never asked for or wanted to be treated any different either.

Ang also lost both of her parents by the time she was 30.This is a loss I cannot even imagine, a pain I have never had to experience. She has had pain in her life too, just not the same pain that I have endured. So she has taken what she has went through, and just as I have done with my painful experiences, has become an even more compassionate and understanding person. Pain in any form can allow you to enjoy life more, to hug your children tighter, kiss your husband one more time each day, and notice how bright the sun is and just how beautiful even rain can be (especially when you are running up steps all dressed up in heels going to the NKOTB concert~something only Ang and myself would understand!)

Ang and her hubby Rob have two children, gorgeous children, a boy and a girl! They have raised them well, and they will be wonderful adults who will know to treat everyone with respect, even those who have challenges. They don't see people who are different from them as being bad or wrong. Great job, Ang and Rob! When we were in the process of adopting Michael, my husband and I decided to ask Ang and her hubby Rob to be the legal guardians to Michael if, God forbid, anything were to happen to us. Now of course, I see Ang with Michael, I see a Mommy! I see Rob with Michael; I see a Daddy! I really hate the term " legal guardian." I would hope if something happened to us, Michael would call them Mommy and Daddy. That is how good of a friend she is to me! She is also going to be Michael's Godmother in a couple days when he is baptized. Michael is a very lucky little boy.


Kelbi, Susan and Carlene all share my pain. I mean they all have a form of arthritis and fibromyalgia. I am able to call or email them any time of the day to talk about anything. It is especially wonderful to have friends who share something like this because they understand exactly what it's like to not be able to get out of bed, to cancel appointments, to feel so fatigued you can't even wash a bowl in the sink or stand to take a shower. They just "get me." It is sad that what brought Carlene and Kelbi to me was the Arthritis Foundation. If it weren't for our disabling conditions and wanting to help other young adults and other people learn to help themselves to deal with the pain and fatigue, we may have never met. If I didn't have arthritis, I wouldn't have been seeing a counselor, and I wouldn't have been introduced to Susan. 

Kelbi is considered "Aunt Kelbi" to Michael. She has not only been a wonderful support to me when I needed to vent my frustrations with these awful chronic diseases, a fantastic knowledge base when I had questions about certain treatments that I was considering, and a smiling face when she comes over with lunch and a beautiful gift for Michael. She is the best person to go do things with like Crystal Bowl Meditation. I can't think of anyone I would rather go to that with!!! I have to give her a call to do that again sometime soon, actually. I am due for some Bowl Meditation about now!! She also is a talented photographer who helped us with our photo album for the adoption of Michael. She is a Reiki Master, which is just another connection we have since I am also an energy healer. The universe has somehow brought us together.  

Susan was introduced to me by my counselor. We were both introduced to an energy healer instructor Beth. We learned how to better direct our energy and use it to help others. We began to learn that we are very much "soul sisters." She and I both have spondyloarthropathies. We both have fibromyalgia. We both are learning about energy and its use to better others and the world around us. We both rescue dogs. She is also known as "Aunt Susan" to Michael. She lives a little drive away from us, but she makes the drive to come see her "nephew" and me. Susan has dealt with the pain of arthritis, fibromyalgia as well as other pain in her past and divorce. She is a great friend to go to lunch, get cookies at our fave place, try new places around town, chat online, by phone, and she always saves me on my Blog Talk Radio show by being the only caller. She is a great secret keeper!

I met Carlene when my husband was a visiting professor. I decided to keep myself busy and took a took a class to be an instructor for a self-help class for people with arthritis with the Arthritis Foundations. That is the first time I spoke to Carlene. She is a person who has not only had pain in her life from arthritis and fibromyalgia as well as infertility and a painful childhood, marriage and now a divorce. She has given me strength through her compassion, understanding, courage and hard work. She went back to school after getting married and having a family (a wonderful son). As she learned how to stand on her own two feet and that she did not need a husband to make it in the world, she got a divorce and continued through her schooling. She is studying mental health. She would love to help others with chronic disease/pain conditions. This has made me want to do more. So I have begun to write a book and have started my Blog Talk Radio show. She is a fantastic Mommy. Her son will grow up with such respect for women and people with disabilities and challenges because of Carlene~because he has lived this life with a mother who has denied him nothing although she cannot always do everything the same way others can.

So in summary, I have four Bestest Friends: Ang, Kelbi, Susan and Carlene. They each have entered my life at different times, in different ways, for different reasons~all staying to support me, love me, care for me, understand me, and always be there for me!!! Thank you so much. What would I ever do, where would I ever be, and how could I ever go on without you all?

My First Guest Blogger!

I have met such a wonderful person and fellow blogger online. She also is a chronic illness blogger who wants to get the word out to people about health, activism and how illness affects us and our daily lives, while keeping it real and fun! Her name is Kelly Christal Johnston, and the name of her blog is Hurting But Hopeful. She describes herself as: "...a mother and wife first, and a patient with Ankylosing Spondylitis second...meant to be an AS Activist, and...take(s) that very seriously. [She] hope(s) [she] can not only teach the world what living with AS is about, but...[she] can help others like [her] deal with the toll it takes on not only our bodies, but our souls. So with this blog...[she] hope(s) you can get to know [her], [her] goals, and more about AS." I chose her as my very first guest blogger! So, please read this wonderful, blog post, by Kelly. She writes from her heart, mind, soul and body!

I Want

By hurtingbuthopeful

I want to be a grandmother one day, I want to sit in a rocking chair on my front porch next to my husband, while I watch my grandkids play in the front yard and drink lemonade.


I want to give all my worries to God, to never have to carry their weight on my shoulders again, to know He will take them and replace them with absolute Faith.


I want my family to know that I will always be here for them.  That I will do anything and everything in my power to make this life the best I can.


I want to be able to take my kids to the park, to the zoo, to the beach without having to worry about medications or the weather or how my body is going to feel that day.


I want the world to know that there is a group of diseases called Spondylitis, and I have one of them, Ankylosing Spondylitis.  I didn’t ask for it, I don’t want it, but it’s here so I need to make the best of it.


I want my body to know that it can fuse my spine, and it can damage all my joints, but it will not damage my spirit and my soul that lives within.


I want my kids to know that I didn’t have this disease before I had them, but I do have it now, and even though I know how hard it is to be a mom with AS, I would never not want to be their mother and I will always try to be the best mom I can be.


I want my friends to know that I hate having to cancel plans, and I hate not being able to answer their phone calls.  I wish I wasnt that sick friend who flakes out.  I will always do the best that I can to be there for them, disease or not.


I want my dad to know that I love him, and I am so proud of him.  I want him to know that even though I can’t work like I used to, that I am still me, and I will still try to make him proud.


I want everyone to know that my mother is in Heaven, and that she has been there for over 10 years, and I still can’t think about what that means.  My heart will never be whole, and I walk around expecting people to see me falling apart.


I want all medical professionals to know that people with pain didn’t ask to hurt.  Please treat us the way you would treat your own parent, spouse, or child, and when a patient tells you they need help, help them without judgement.


I want to wake up without pain, I want to get through an entire day with nothing but happiness and joy.  I want to be carefree and just have fun.


I want to fall asleep with ease, and to sleep like a baby, then to wake up feeling rested and healthy.


I want to look to the future with hope and great expectations.  I want this disease to know it will not keep me from making goals, or from accomplishing them.


I want to be free of bitterness and anger.  I want to let go of the attitude that I am generally unaware of.  I want everyone to like me, I want everyone to know who I really am on the inside.


I want to be healthy.  I want my body to work right, and to be at a healthy weight, to be able to touch my toes, and to pick up my kids.


I want my body to be the 32 years old it is, instead of the 92 years old it feels.


I want to know that all my friends are happy and healthy.  I want them to know they will never be alone, or in pain, or sad again, that we will always have a solution for every problem.


I want to be understood.  I want to be able to communicate my feelings accurately and to be able to help others with my words.


I want my students to know that I cherish the years I had with them.  I want them to know I am proud of them and I love them like they were my own children.


I want everyone to know that the sky is the limit.  Life is what we make it, so lets make it great.


I want my husband to know that I love him more than anything in this world.  He completes me, and our lives may not be perfect, but I am completely in love with him, and I will never give up on us.


I want those of you who read my blog to know that it means so much to me, your comments and encouragement gives me strength I didn’t know I had, and you are not alone as long as I am around.


I want the future to be amazing, I hope it is full of good surprises, full of family and friends, and full of perfect memory making moments.


I want to remember that sometimes things won’t turn out the way I would have wanted, and that I will be ok with that.  I want to always keep in mind that life has this funny way of working itself out.


I want a cure for all illnesses, but especially for Ankylosing Spondylitis, and for the ignorance that surrounds this disease.


What do YOU want?

Did you like the idea of having guest bloggers? If you are interested in being a guest blogger, please send an email to: danamarton74@gmail.com or reply to the comment section of the blog post. Also, start thinking about topics for blog carnivals. I am going to begin hosting blog carnivals with Kelly!!! Yay!!!