More on Advocacy

I have written numerous times on being your own advocate, or getting someone to advocate for you if you are chronically ill. Recently I posted an article by Dr. Laurie Ferguson of Creaky Joints about the same topic. Judging by the response I got in comments and e-mails I certainly hit upon something that is a hot topic for all of us!

Because I am so ill myself right now, I have had to do a lot of advocating for myself with doctors. My mother is also ill, and because she is older and isn't able to be confrontational with doctors, I have to do most of the advocating for her as well. It is exhausting, but so necessary. No matter how much you may like your doctor, you have to look out for your own health. I am not saying that doctors are trying give us bad care, but they are overworked and fighting through the same broken medical health system we are!

I have a dear friend who has an elderly mom who has multiple medical problems. He has been trying to sort out what is going on with her. Some doctors will work with him easily, others are not responsive. She has been WAY over medicated since a recent hospitalization. Had he not continued to advocate for her, and fight for someone to listen, I have no doubt that results would have been deadly.

My mother will be needing surgery soon, and I will be in the position of making sure that things get taken care of properly for her. I am still trying to get my own surgery scheduled and sorted out.

Some of you wrote that you have wonderful spouses and family members who are willing to take on this role. Others wrote that they, like me, are not only their own advocate, but in many cases are caring for a sick spouse or parent as well. Not everyone has family close by or friends who are willing to step up and help out in this way. Believe me I understand this, because my own situation is like that as well. However, I have found that if you can be creative you can find ways of getting some of the help you need.

We all have to fill out those wonderful "privacy forms" each time we start at a new doctors office. Make sure that you know who IS willing to help, even if they aren't local, and make sure they are listed as contacts on those forms. I have had friends and family members who spoke to doctors in other states for me via phone or e-mail when I needed help. As long as I have given permission, most doctors are willing to speak with someone about my care. So if you have adult children or friends who would help, but aren't able to come to doctor's visits with you, this is a way they can be involved in your care if you need them.

I know for me the level of help I need waxes and wanes with the degree of illness I am suffering. I try not to involve people in all the little daily things, but I do call them in when I feel I need help.

Another way you might find of getting others to help is in researching medications or conditions for you. Sometimes just sitting at the computer or making a call to the insurance company can be overwhelming. This is another area where someone else can step in.

I know a lot of you resist the idea of letting people know you need help. Many people don't want everyone knowing the degree of their illness or disability. That is your right and your choice, however, if you want or need help, perhaps you have to look at who you are protecting by not asking for help when you need it. Again, over and over I have found that most of my friends and family WANT to help, they simply have no idea what to do. They are grateful when I give them a concrete task that helps me out. It makes them feel like they are doing something, and takes away some of the feelings of helplessness that they have having to sit and watch me suffer. It helps me because it is one less thing I need to do. It is a win-win situation.

I am not saying you need to share everything about your illness with every person you know. But you know who you can trust and count on, so start thinking about how you can get some much needed support without burdening or over-taxing your friends and loved ones!

You are worth taking care of and you deserve the support and advocacy you need!

Update

I haven't been posting a lot lately, as many of my regular readers have noted. I had been planning to have surgery, which was then postponed due to infection. I am still not able to schedule the surgery because we haven't resolved the infection issue as of yet. In addition to dealing with all that entails, I have been switching pain medications. The pain medication I was taking was working well, it controlled my pain with side effects that were live-able. Unfortunately, my prescription coverage decided to stop paying for the particular drug I was taking and the cost for me to buy it out of pocket was not even a possibility (think mortgage payment and you'd be in the right ballpark!). This led me to try the generic alternative of the same drug. The generic did nothing to control pain and caused lots of unpleasant side effects. Just recently my pain management doctor changed my medication altogether in the hopes that we will find something to get the pain back under control. All along he has been fighting with my insurance company, trying to get them to approve the original medication again since it works for me and I can tolerate it. Of course we all know it isn't what the doctor thinks, or what works best for the patient anymore, it all comes down to money and what the insurance company will pay for.

So, I have been in a lot of pain. I have been fatigued from the pain and from fighting the infection that won't go away. I have had other issues as well, but those are the two biggies which have kept me from blogging. Most of my days are spent trying to do the things I HAVE to with little or no energy to deal with the things I WANT to (like blogging). I have missed the contact and the conversation of this blog and the wonderful readers and friends I have made through it.

I intend to do my best to keep blogging as I am able and I appreciate the support and understanding you show me when I am "quiet" for awhile. I am also way behind in reading the blogs I usually keep up with, so I apologize to those of you who haven't seen me commenting on your posts either.

It's another fact of being chronically ill, we don't always get to control things. I used to get really upset over that fact, and feel guilty because I couldn't keep up with other people. Now I realize that I am just fine the way I am. I take care of myself when I need to and I know that the people who care about me will understand. I am so grateful to have that peace. It was a long time coming, but it has made all the difference.

Looking forward to better days ahead and lots of posts and conversations with you all!

Happy Easter

I have much catching up to do, but I wanted to take this time first to wish everyone a very Happy Easter. It is such an important holy day to me, and with all I have been going through physically and emotionally, it has been even more precious this year. I hope that the grace of the risen Lord fills your heart with hope, love and healing. To all my dear readers and friends who have written in concern, I thank you from the bottom of my heart. Thank you for the support, the prayers and the caring. What a beautiful gift you all are to me.

Violence Against Women

I haven't ordered anything from Avon in years. No particular reason, just haven't checked out a catalog in a long time. Recently while I have having my hair done I was flipping through an Avon catalog at the salon and noticed that in addition to the company's support of breast cancer research, they also have another charity as part of the Avon Foundation. The actress Reese Witherspoon is their Global Ambassador for these campaigns. I am going to use her words here to describe the jewelry item and what Avon is doing with the profits from its sale:

"I am proud to introduce the Avon Empowerment Necklace. Thanks to you, 2008 sales of the empowerment Bracelet raised over $1 million for the UN Trust Fund to End Violence Against Women and generated more than $2.5 million in additional funds for local programs in the US and globally to help victims and their families. Purchase the necklace now and let's help stop the violence - - together."

For more information you can visit avonfoundation.org.

The necklace costs $5 and 100% of the profits from its sales go to the fund. I don't work for Avon and I am not related to anyone who does. I just wanted to point out something good when I saw it. I respect the fact that a large company is taking violence against women seriously, and bringing much needed attention and funding to helping to stop it.

I know times are tough and we all have to think about how we are spending our money, even a spare $5. I love the idea that I can buy this necklace and not only will my purchase price go toward something I support, but I can use the necklace itself as a tool to bring attention and advocacy to an important cause.

Pain-Blog Carnival Is Up!

The March Pain-Blog carnival is up at How to Cope with Pain: http://www.howtocopewithpain.org/blog/705/pain-carnival-march-2009/

Please take a look at this months entries and visit some of the blogs listed for interesting information.

Creaky Joints and Dr. Laurie Ferguson

I had the honor of interviewing Dr. Laurie Ferguson, who writes the Ethereal Cereal column for Creaky Joints, the best site out there for all things arthritis related. I had contacted Dr. Ferguson after reading her post on advocacy and receiving her kind permission to re-print her post here. If you read my blog with any regularity you know I am a big proponent of self advocacy and have written on the topic frequently. So, without further ado, I submit for your approval Dr. Laurie's Healthcare Battle Plan:

Dr. Laurie's Healthcare Battle Plan

by Dr. Laurie Ferguson — last modified Feb 23, 2009 08:27 PM

Shuttling between several doctors? Dr. Laurie explains exactly how to protect yourself.

A client of mine isn't doing so well. I'm watching her cope with a new round of doctor visits, tests, questions ... and fears. She is on the merry-go-round of one visit leading to three new appointments with different physicians -- each one working to diagnose and treat her many symptoms.

There is something different in her approach though, and it is making me think.

She seems to be doing most of the work.

The landscape of medicine has changed with lightspeed ... and many of us are still catching up. We only have minutes with our physician. We are given options -- not decisions. And there is an often unspoken expectation that we are the ones in charge.

She is taking each opinion, each "recommendation," and she and her partner are sifting through the data, doing some research, and choosing what seems best to pursue as a healing option.

In the not-so-distant past, she -- and many of my other patients -- would have relied on a doctor to choose a path.

He (and The Doctor was almost always a He) made the decisions, and was The Omniscient Healer. We looked up to our doctors. We relied on their experience and wisdom -- and hopefully on their caring concern.

The landscape of medicine has changed with lightspeed ... and many of us are still catching up. We only have minutes with our physician. We are given options -- not decisions. And there is an often unspoken expectation that we are the ones in charge.

That's the good news -- and the difficult news, isn't it? We have to adjust to this new way of doing things at a time when we feel most in need of someone to lean on, someone who will take care of us and make it all better. But we also know that this is unrealistic -- a fairy tale that never quite fits the situation.

Our work is to help ourselves grow up a little into this responsibility and develop some ways to adjust and use our new power most effectively for our own healing.

I'm watching my clients and here is what I've learned:

The good news is, if we're in charge, we get to decide.

OK. The doc may recommend certain surgeries, or a certain course of medication. But once we do some research -- and ask around -- then we choose. You and your body are the best judge of what works for you. You're in charge -- and you know what works best for you.

• Speak up.
• Speak out.
• Tell the truth.
• And be The Boss.

It's empowering and it is what will make you feel better.

Get an advocate.

Don't try to keep track of everything or make decisions by yourself. Again, this is good news -- partners make us stronger. They help us feel better.

If it isn't a family member, take a friend. If you don't think you have a friend that close, then get to work to make sure there are some people in your life you can count on. This is a two-way street and it is part of healing.

Write everything down.

Get copies of tests, records, whatever. Doctors will make mistakes. You need your own written stuff.

Keep track.

Nobody else is. This means a written list of every medication and herbal thing you are doing. Make sure every doctor, every assistant, and every pharmacist sees it. Every time. Don't assume they "know" -- even if they have seen your list, they have often forgotten.

Have second opinions. Use alternative modalities. Use research.

The internet is wonderful ... and awful. Go to reputable sites, and double-check what you learn. Reach out to other patients, nurses, and support groups. Be informed. Then practice making decisions.

This is a new way of being for most of us. It steers us in the direction of responsibility -- instead of feeling passive or victimized.

Once you begin to practice this, it's heady, intoxicating, and, yes, sometimes a little scary. But being a grown-up is always more scary ... and more fun -- because you get to set the course. You get to decide how late to stay up, what to have in the fridge, and how to spend your money.

Should your health care be in any one else's control?

It's your body. Your side effects. Your pain. Your healing. Your life.

I'm rooting for you.

To send Dr. Laurie your thoughts:

• add a comment below
• or e-mail her by clicking here

One Step Forward, Two Steps Back

I want to apologize for the long delay since my last post. Regular readers are probably aware not only of my daily health challenges, but also what I have been going through trying to get a surgery scheduled and done. I have been battling an infection that just won't clear, which is common for those of us who deal with multiple health issues, especially autoimmune ones. Right now my immune system just isn't working, and as a result the surgery has been postponed indefinitely. Until the infection clears we cannot take the chance of spreading it systemically during the operation. I understand this, but it doesn't make it easier to deal with.

Another thing I have been going through is what my dentist calls "remodeling" of my jaw. I had to laugh when he said that, I mean what person with chronic illness doesn't feel like their whole body has been remodeled (and not to their liking!). Seriously, I had a tooth extracted back in February and have been waiting for the site to heal completely since (see the above paragraph about how we don't heal quickly!). Last week I noticed a very sharp piece of something, which felt suspiciously like bone to my untrained finger, jutting forth from my gum at the site where the tooth had been extracted from. Sure enough, that is exactly what it is. Evidently when we lose a tooth the jaw "remodels" itself to adapt to the loss and shape itself accordingly (aren't our bodies fascinating things?!). Anyway, this piece of bone will eventually make its way out of the gum and out of my mouth. In the meantime all I can do is wait and use warm salt water swishes to help it along.

So my absence from the blogosphere has been due to numerous health complications that have drained me physically, emotionally and creatively. I appreciate your patience with me and will try to get back on track as my health allows.