Friday, March 27, 2009

Pain-Blog Carnival Is Up!

The March Pain-Blog carnival is up at How to Cope with Pain:

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

Wednesday, March 25, 2009

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:

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.

Tuesday, March 10, 2009

Wordless Wednesday - What A Difference A Week Makes

Goodbye Winter. . .

Hello (and welcome) Spring!

Advocating - Sometimes It Works, and Sometimes It Doesn't

I think for me one of the most frustrating parts of having chronic illness is the constant need to advocate for myself. It is tiring, both emotionally and physically, but I know it is important so I do it to the best of my ability. I encourage others to do it as well, so it is an area where I try to "walk my talk".

I was scheduled for surgery on March 18th. Because I have a complicated medical history, I addressed issues with my doctor as soon as we agreed that surgery would be necessary. I take pain medication daily, so that is a big issue that has to taken into account when you are talking about having any sort of procedure. For one thing, my body is used to having that type of medication, so my need for proper dosages of anesthesia and post operative pain care are different than the average patient. Another complication comes in from the area of my adrenal insufficiency. Because my body doesn't make cortisol the way it should, I have to take hydrocortisone daily as a replacement. Any time I am sick or under a lot of stress I have to take additional doses. This is especially true for something like an operation or procedure. It is another item that needs to be dealt with before any surgery, hospitalization or procedure is done.

Knowing all of this, I have been diligent in getting my GYN (who will be performing my surgery) to contact the other specialists who handle these different aspects of my care. It is annoying to always have to be the one who brings these items up, but I have learned from past experience that the only person who suffers if I don't is me, so my advocating for myself is purely self-interest.

Despite the fact that my surgery was scheduled over 3 weeks ago, and that I have tried to make sure that all of these factors were taken into consideration, I learned yesterday that my surgery was being cancelled for the 18th and will have to be re-scheduled. The long and short of it being I need to be the first patient of the day to deal with the pain management control area of my case. One doctor blames another for overlooking this crucial point, but the fact is it doesn't really matter who is at fault because once again the person who is affected the most is ME. I am annoyed because I have spent the past few weeks getting ready both mentally and physically to have this done next week. I have spent time going to appointments that revolved around pre-op stuff, making sure that people would be available to help me out after the surgery since I won't be hospitalized, getting things in order at home and a million other tasks that required my energy and focus, both of which are always in short supply when you are chronically ill. Now I will have to wait for the surgery to be re-scheduled and repeat the whole process all over. Not only it is frustrating, it is upsetting.

The best part is that the doctors and their offices actually have the nerve to act put off by this, as if being chronically ill and needing all these special arrangements are something someone enjoys and likes having to deal with! Again, even with the best advocacy I could provide, the person who ends up paying for the mistakes of others is me, and as if that isn't bad enough I also get treated to a dose of attitude on top of it. I could understand their feelings if I waited until the last minute to provide them with information that caused them to have to re-schedule, but since the errors aren't mine I don't appreciate having to deal with hostility at their own mistakes being directed at me.

The only thing I can say is that in the past, before I learned how things really happened in our health care system, I would have trusted that the doctors would take care of all of this, and instead of facing a postponed surgery, I would be sitting in the surgical area without proper pain management and facing the possibility of adrenal failure or shock from lack of treatment for my condition. So I guess instead of looking at this as the total failure of my advocacy, I should look at it as a small victory - I no longer allow myself to be treated that way. I will have the surgery when the proper procedures have been put into place to make it as safe and effective for me as possible.

Monday, March 9, 2009

Things That Make For A Happy Day

I was reading a blog post the other day by Kristin from Adventures in Chaos that talked about the growing state of anxiety we are all feeling right now over the economic situation. In her post she talked about the things she really needs to be happy in a recession. That got me thinking about my own personal list for a happy day, which I am sharing with you below:

  1. A cup of hot tea, preferably in the morning and evening, but at other times of the day as well
  2. A reasonably good nights sleep the night before
  3. Something to look forward to that makes me want to start my day, it can be plans with a friend, a hobby or craft or even just a beautiful day
  4. A piece of dark chocolate
  5. A personal letter, e-mail or even a kind comment on my blog
  6. The love and support of family & friends
  7. Some quiet time to myself in which to pray, relax or read
  8. A good laugh
  9. A full tank of gas and a car in good running condition
  10. A sense of gratitude for whatever health I have that day
I'd like to point out that most of these things are free, and many of them are within my control, both of which are nice to know in these uncertain times.

Now it's your turn, what things do you consider essential to a happy day? Come on, I'm waiting to hear. . .

Tuesday, March 3, 2009

Wordless Wednesday - Inside The Sunken Forest

All of these photos were taken at the Sunken Forest on Fire Island in New York. I had posted some beach photos from there and some of you expressed an interest in learning more about the Sunken Forest.

Gnarled trees abound!

I loved this piece of driftwood in the bog.

Fabulous raised wooden walks throughout. Hope you enjoyed the mini-tour!

Change The Conversation - Stop Using The R-Word

Who says you can't learn anything important from watching TV? Yesterday, while watching an interview with John C. McGinley on the Bonnie Hunt show, I learned about a program started by the Special Olympics. John C. McGinley has a son who has Down Syndrome. He spoke about the February 9th episode of the Bill O'Reilly show on which the word "retard" was used in a callous and derogatory manner. The statement was made by a guest on the show, Dick Morris, who said:

". . .What he [Obama] didn't quite explain to me, and maybe I'm a little retarded about this is. . ."

The result of this is the following video created by delegates of the Global Youth Activation Summit, Please take a moment to watch this important message:

Those of us who suffer from chronic illness know all too well how awful it feels to be judged unfairly or labeled by others. We are called weak or lazy for not being able to do things healthy people can. We are thought of as crazy or hypochondriacs because people don't believe in an illness they can't "see".

We who blog use words everyday to express our thoughts and feelings. Let's all make a pledge to stop the use of the R-word and all other hateful and hurtful language. Please head over to the Special Olympics website and take the pledge, grab the badge and blog about this campaign. This is one of the rare opportunities we get in life to make a difference for the better! Please join me today.

Monday, March 2, 2009

Snowstorms and Illness

Today we had a good old fashioned blizzard - yep a full on 14 inches of heavy, wet snow! When I was a kid I couldn't wait for such storms, it meant a day off from school. As an adult it isn't such a joyful event.

I realize that what I am about to say can apply to healthy people to a degree as well when you are talking about such large amounts of snow, but allow me to rant anyway:

  • On a good day I can barely lift groceries to bring them in from the car, so you can imagine that shoveling heavy snow isn't possible for me.
  • Of course the blizzard had to hit on the day I have an appointment with my pain management specialist, and I am having trouble with my medication so I needed to see him today.
  • This being New York, nothing but school closes for snow, so the doctor's office wasn't exactly thrilled that I cancelled my appointment, despite the fact I couldn't get out my door, no less my driveway.
  • My landlord is supposed to have snow removal service as part of the price of our rent, however the service is spotty at best. Sometimes they arrive the day AFTER a storm ends sometimes they don't arrive at all.
  • My mother and I are stuck in the house until we can find someone to shovel us out, or the snow removal people make their appearance.
I understand this isn't the end of the world, but it another frustration of being ill and not being able to do things others can. Because the illnesses I have aren't obvious to others (thus the term "invisible illnesses") my neighbors assume that I am a young, healthy person and don't offer to help with the snow. I don't blame them for this, and if I knew them better, I would probably ask for help, but I don't know them and feel awkward going up to a stranger to explain my personal medical history and ask for help. Frankly , with as much snow as we've gotten I would feel guilty asking anyone without a snow blower, because it is really exhausting work. It is just another thing I can't do and it means that I will have to wait another week in pain to see my doctor.

On the flip side, I am grateful that we have a warm roof over our heads. Because we had advance warning the storm was coming we have food to eat and will be alright if we are stuck indoors for a few days. I know that many people aren't so blessed, they are cold or hungry or worse. So I am going to try to look at the part of my glass that is half full and not the empty part. Harder to do when I am in pain, but good practice for me, especially in this season of Lent. So for the moment, thank you God for supplying me with another lesson in humility and thankfulness, please help me to use it to learn how deeply you love me and care for me, even when I think I am forgotten - You never forget me!