Helping women with chronic illnesses
ChronicHealing.com

Category — Dysautonomia

Frozen

Everything seems to be frozen now. No, I’m most definitely not talking temperature. Quite the contrary. My heat intolerance has been very challenging lately. (Cue the dysautonomia series re-post). No, I mean I’m frozen as far as writing blog posts right now.

No, I do not have a writer’s block. Quite the contrary. I have ideas about what to write fairly bursting out of my head. However, illness and time constraints have kept me from writing about even a fraction of what I’d like to be writing about. So, bear with me. I’ll try to catch up as soon as I am able.

Those of you connected with me on Facebook heard bits and pieces about why I narrowly averted a trip to the emergency room on Saturday (long story requiring a future post). I’m grateful to be doing better than I was Saturday but I’m still having considerable pain. So, bear with me. I’m sure with this hot weather I won’t stay frozen for long! Stay tuned!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

June 14, 2010   3 Comments

Two Years: Reflecting

On June 1, 2008 I set off on an adventure. I had no idea where it would lead. That was exactly two years ago today. It has been a labor of love to be sure and I am extremely grateful for the opportunities and joy it has brought. It has been a wonderful journey and learning experience. I have met some of the kindest, funniest, sweetest, most compassionate people from around the world the past two years!

On that day, I began writing a blog called Jeanne’s Endo Blog. It was never really a blog about just endometriosis at all.

However, when I started writing a blog I knew endometriosis would be one of the illnesses on which I would focus my writing. After all, my journey with chronic conditions began 28 years ago with endometriosis. I was then just thirteen years old when my symptoms started in 1982. Ten years after that, I had a laparoscopic surgery that finally gave me a name for the illness that had turned my life upside down at age 13: endometriosis. It has been said that the average diagnosis of endometriosis occurs 9.9 years after the onset of symptoms. So, the time lag for my diagnosis was a textbook case. This type of delay is absolutely unacceptable. (There are many previous posts about why such a delay occurs – in the 373 posts that preceded this. I encourage readers to check my blog’s archives and/or search box in the right sidebar to locate such posts).

Regular readers here know that I have by no means confined my writing to endometriosis. At the same time, my passion for the endometriosis cause has made it a focal point amongst the posts about other illnesses and causes.

My husband commented a few days ago that my keyboard (new as of about a year ago) has been used so much that many of the letters no longer have their markings. That’s right. I have worn the letters off my keyboard. It has been a busy two years!

As the years have gone on since I became chronically ill in 1982, quite an array of additional illnesses have been added to my list of diagnoses. This link mentions a few of them. I have so much that I wish to say about each of my chronic conditions that I often have an internal struggle regarding how to spend my time and focus my energy.

So many of these conditions need more awareness! So many are poorly understood and under-researched/under-funded. So many involve patients whose experiences are not validated by our society or even their own loved ones (especially true for the “invisible illnesses”). Many patients are accused of exaggerating or of having “psychosomatic” illnesses. I struggle with how to give fair time to each of these illnesses. Which way should I turn? Which illness is facing the most pressing issues? Which illness is having an awareness day/week/month? How can I best help the causes that are dear to me? What is the most efficient use of my time?

Where should I go next when there is so much to do?

The reality is that I can’t do justice to all of the topics that I wish I could write about as frequently as I would like to write about them. I try to but the risk of burnout or escalating symptoms forces me to prioritize as best I can and try to pace myself. Sometimes I am better at this than others. Sometimes I don’t practice what I preach about the importance of self-care. To attempt to do justice to every issue I’m passionate about with my writing tends to throw the self-care I preach out the window. The reality is that I need to practice what I preach and take care of myself so I don’t get sicker and/or burned out from pushing myself too hard. This is probably the most challenging part of blogging for me. If I wrote 24/7, I could never do justice to each illness the way I’d like to in a perfect world. There are just 24 hours in a day. I have some serious health problems that place limitations on me. I may not like it but it’s the reality. Even if I were healthy, what I wish I could write about is beyond what one person can do. I have been trying my best to make peace with this fact.

In addition to writing about illnesses I have, I also advocate for causes I believe in (such as illnesses that do not affect me firsthand but do impact large numbers of my friends – online and off). Also, I spend an enormous about of time in “off the blog” conversations with fellow patients: giving/receiving support, sharing resources and information, working as a team to research issues we care about, etc.

When I converted my blog from Jeanne’s Endo Blog to Chronic Healing, I wanted a blog name that captured my desire to keep writing about many chronic conditions. I wanted the name to expand beyond endometriosis alone. Finally, I wanted it to be positive and reflect healing.

In the course of a conversation with Cassie Germsheid (who re-designed my blog and migrated my data from Blogger to WordPress) about what to name this blog, I decided on the name Chronic Healing. With Cassie’s outstanding help and a great deal of hard work, I was able to realize my goal of launching Chronic Healing on June 1, 2009… the one year anniversary of when I began blogging initially. There was an enormous amount of data migrated. Cassie helped me make Chronic Healing what it is today.

Now, here we are a year later. I cannot express how much I have learned, how touched I have been by the kindness and compassion of so many people that I have had the privilege to “meet” online, how many intense/strong connections I have made with fellow patients around the world, how much support and information I have received, etc. My only hope is that I have been able to touch the lives of those I have met on this awesome journey even a fraction of how much they have touched me. It has been an honor and a joy to interact with so many people who practice compassion and loving kindness each day.

The LOVE expressed to me by my online friends warms my heart and amazes me every day. It truly is amazing and heartwarming. The acts of compassion I have witnessed these last two years are beyond anything I could have imagined.

It would be impossible for me to thank everyone publicly but please accept this post as my blanket thank you to everyone. If you are reading this, the thank you applies to you!

Moving on, there is exciting news ahead that is related to a venture that my friend Amanda recently embarked on. Like me, Amanda has endometriosis. She has a new site that is up and running now and you can check it out by clicking below. I encourage you to do so!

Amanda’s Patch

So what is the exciting news? Well, I had contemplated last week whether to do something to celebrate this two year anniversary but had not decided upon anything. It was just a fleeting thought and I hadn’t decided whether I would or would not have some sort of blog giveaway. The very next day, my dear friend Amanda contacted me volunteering to donate something very special for a blog giveaway.

She had absolutely no idea of my blog’s anniversary date and was simply offering to donate a handmade item because, frankly, it is in her nature to do thoughtful, caring, supportive things like that.

I was very pleased with the timing of Amanda’s generous offer to donate an item for a blog giveaway. For it to be a handmade, beautiful giveaway item from someone I respect so much and for it to unfold at the perfect time for an anniversary giveaway is just wonderful.

It gets even better… The handmade item she is donating for a blog giveaway for this very post fits perfectly with the healing theme of this blog! You see, Amanda uses healing crystals in her handmade jewelry. What a perfect way to honor healing… the very theme of this blog.

Before I share a description of the item or the photograph of the prize that someone reading this will win, I would like to urge readers to check out Amanda’s new online shop. She recently launched her own business and I am beyond thrilled for her! Click below to check out her site:

Please note that the above link will take you to two places (her online shop and her blog). On the Amanda’s Patch blog, she has a section that talks about endometriosis. As Amanda puts it on her blog’s endometriosis section, here is why she included some information about endometriosis on the blog:

“You see, my endometriosis was a massive part of the decision to start Amanda’s Patch and so it had to be involved somewhere”.

I love the way Amanda increases endometriosis awareness through her new business and lets those visiting her shop’s blog know why the endometriosis cause is important to her! She is integrating her personal experience into her new venture in such a wonderful way that can educate people about endometriosis. (Among Amanda’s past blogs is “Me and You at 22″, which many regular readers here will recognize).

Well, I have reminisced enough. I do believe it’s time to get on to the details about the blog giveaway!

Here is a photograph of the beautiful necklace handmade by Amanda:

Prize description of necklace:

Amanda says, “the necklace is made from amethyst and aventurine beads crocheted onto silver-plated copper wire and has a lily-shaped toggle clasp. Amethyst and aventurine are both part of the quartz family, which means they complement each other beautifully and will go with pretty much any other crystals the winner may wear”. Amanda adds that as far as energy is concerned, “all crystals have energy properties”. She also notes that, “all types of quartz have different properties but the family are, quite simply, great for healing negative energies!”

Amanda notes: “amethyst works with the ‘higher’ chakras, particularly the third eye and crown chakras which will help on a physical level for the head and sinus areas as well as spiritually by helping to clear the thoughts and emotionally by helping to clear the blocked emotions” and that “aventurine works on the heart chakra, helping to ease heartache, particularly caused by factors out of our control. Green is a particularly healing color (colors are so important). It helps ground us, find the best in our environments (think of connections with nature) and is great for emotional pain”.

Finally, here is some random trivia about crystals. Amanda tells me that work is being done on using crystals as massive data storage devices. I did a search online and I found a link about this topic here:

Tiny Crystals Could Hold Key To Massive Computer Memory

Interesting, huh?

As with past blog giveaways, the winner will be chosen randomly based on comment number and you may leave as many comments as you wish. (Obviously, multiple comments increase your odds of winning this beautiful crystal necklace). Amanda has generously offered to ship the prize to the winner regardless of their location. So, this contest has no geographical requirements. If you’re interested in a chance to win this lovely necklace, be sure to leave a comment! I’ll pick a winner in a few days. I haven’t decided when I’ll be picking the winner. So, get your comments in now to enter.

Thank you!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

June 1, 2010   24 Comments

The Opportunities Presented By Adversity (VIDEO)

Powerful. Inspirational. Moving. Enlightening. Wow.

Watch:

Aimee Mullins

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

April 1, 2010   16 Comments

House Sends Health Care Bill To President Obama

Visit msnbc.com for breaking news, world news, and news about the economy

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

March 22, 2010   2 Comments

Sick On Top Of Sick

Being chronically ill has often been compared to riding a roller coaster ride. Things are never boring.

Being sick on top of sick is a situation many people can relate to. I decided it would be an appropriate topic to write about today, in light of how I have been feeling for about a week now.

Some days are up.

Some days are down.

Some days are downright dizzying!

Anyone who is chronically ill knows that when you get sick with some sort of bacterial or viral infection on top of the chronic illness(es) you already have, it makes a challenging situation even more so.

I have been in a flare-up of fibromyalgia for the last couple of weeks. The change in weather did its thing, as it always does, and my muscles were not happy. Then, I got some sort of bug that includes muscle pain along with a very sore throat and a wicked headache. The fatigue was so severe that I slept the better part of the day on Monday and Tuesday. Yesterday, I started feeling human again.

Anyone who knows me at all knows that getting sidelined during Endometriosis Awareness Month was very frustrating. However, my body made it very clear that writing blog posts was not an option. Those of you who are connected with me on Facebook saw me pop up occasionally there. Posting comments here and there on Facebook is about all I’ve had energy to do the last few days.

There is one other thing I was able to spend energy on. I updated my page located below:


Visit The Canary Report

As I mentioned in the last post, I have started a group there called Endometriosis and MCS.

If you have endometriosis and are also chemically sensitive, I encourage you to join the group. It’s brand new and we’re just getting started. So, you can be part of the group from its inception.

In closing, while I have not been able to accomplishment everything I had hoped to accomplish by Day 18 of Endometriosis Awareness Month, that is (frankly) no big surprise. The ideas I have are always more numerous than what I can implement but that’s alright. Endometriosis awareness should occur year-round. While I recognize that March does provide some addition visibility and exposure for the topic of endometriosis, and while I try my best to take advantage of that, I fully realize that the work must occur all year long.

GoPetition

You have signed the endometriosis petition, right? You are aware that ANYONE who supports endometriosis awareness can sign it, right? Several bloggers have posted the petition badge on their blogs. Several other people have posted the link to the petition on their Facebook walls and this has resulted in signatures from their friends and family getting added to the list.

PLEASE… share this petition as widely as possible. We’ve already used it as a tool to force the media to correct inaccuracies about endometriosis in a syndicated newspaper column:

Endometriosis Advocacy and the Media (Re-post)

Think what else we can do with it! Click above to access the petition (and its link). Also, anyone willing to select “StumbleIt” and/or “TweetThis” at the bottom of this post and others like it will help spread the word about endometriosis awareness. If you are registered on StumbleUpon, please consider writing a review of this post or of the petition itself. I added the petition to StumbleUpon and it has gotten a fair number of views. Here is the link to the StumbleUpon version of the same petition you can access with the blue badge above:

Create Endometriosis Awareness & Understanding

Thank you.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

March 18, 2010   9 Comments

Teen With Suspected Endometriosis

Recently, I published a post regarding a 13 year old with suspected endometriosis. There was a warm outpouring of support from readers to her. Since it is Endometriosis Awareness Month and since so very many endometriosis patients’ symptoms start at young ages, I thought it would be well worth republishing the post and the many thoughtful, detailed, supportive comments that readers posted to the teen in the following post.

Please be sure to read the comments. Even if you saw the post when it was originally published, you may not have seen all of the follow-up comments that followed.

Post on teen with suspected endometriosis:

Article on teen with suspected endometriosis and the numerous thoughtful comments posted to it by readers

It is wonderful to see an outpouring of support in a situation like this. Together, chronic illness patients (regardless of their specific diagnosis) can band together and support each other. Thank you to everyone who took the time to share their supportive and thoughtful words with this 13 year old who is in so much pain.

There is hope and there is support. There are many people who care. You are not alone.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

March 5, 2010   7 Comments

Health Reform And Gender Discrimination

Yesterday, I watched the bipartisan meeting on health reform. The summit was fascinating to me for many reasons but there was a highlight, for me, in the form of remarks made by Rep. Louise Slaughter. She really stood up for women’s health!

Rep. Louise Slaughter

She boldly spoke up for women at the 2/25/2010 health summit

In my mind, her comments can be appreciated by all women and especially any any female patient who has lived with the effects of gender discrimination in relation to medical research (i.e. lack of research on women or lack of investigating illnesses that affect just women) or cost of healthcare that is tied to gender. I won’t even get into a discussion of how common it is for women’s symptoms to be dismissed when similar symptoms would be taken more seriously for males (i.e. heart disease). The point is that Rep. Louise Slaughter stood up for all women and I was just beyond thrilled that she took the opportunity presented by the summit to address these issues.

My thanks to Diana of the Somebody Heal Me blog for posting this video. When I clicked on the link she posted (to the video below), it took me to the Odd Time Signatures site.

Yesterday, I was so thrilled to hear what Rep. Louise Slaughter said that I resolved myself to scour the Internet today to find a video clip of her at yesterday’s summit. Again, Rep. Slaughter wasn’t just speaking up about health reform.

She was speaking up for female patients everywhere and she was shining light on the fact that medical research studies were done almost exclusively on white males up until a startlingly short time ago, relatively speaking. I believe that any patient with an illness that affects women can appreciate the way Rep. Louise Slaughter spoke up for ALL female patients.

As a patient with numerous illnesses that either affect women alone or that affect more women than men, I was absolutely ecstatic to hear Rep. Louise Slaughter articulate what too few people are aware of… and to hear her do so in such a public forum!

There IS gender discrimination not only in the area of medical research but in the very cost of health insurance itself for women vs. men. Before I had even had a chance to locate a video of Rep. Louise Slaughter at yesterday’s summit, I came across a link from Diana that led me to Odd Time Signatures site.

(Video run time 12 minutes and 59 seconds):

Did you miss the summit? I will warn you up front. It’s long. However, you can scroll through the link below and watch parts of it if you choose to. (This video was just a snippet from the summit).

The link below has the summit, in its entirety, broken down into five video parts. You can watch some or all of it at the link below:

Bipartisan Health Care Meeting

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

February 26, 2010   2 Comments

Reid Says Reconciliation Likely On Health Reform

(Photo credit – Getty)

I have written previously regarding healthcare and wanted to take a moment here to post an update on the current situation, for those of you who may not be aware of the status of things at this time.

Rather than re-invent the wheel, I will cite the following post from:

S E N A T U S: Daily Coverage of the United States Senate

See “About Senatus” (taken directly from that site):

Providing daily, non-partisan coverage of the U.S. Senate and the elections which determine its members. This is a private-citizen effort and is in no way affiliated with the federal government.

(Photo credit – Associated Press)

See the following post on the Senatus blog:

Reid Says Reconciliation Likely On Health Reform

According to various news reports, 20 senators have signed so far, calling on Majority Leader Harry Reid to pass the public health insurance option through “reconciliation,” which only needs a simple majority in the Senate. If your Senator is listed as “unknown” on the list below, please consider taking a moment to email or call him/her requesting he/she join the 20 Senators who have already called on Majority Leader Harry Reid, as per above:

Name – ST – Status:

  • Sen. Daniel Akaka – HI – Unknown
  • Sen. Max Baucus – MT - Unknown
  • Sen. Evan Bayh – IN - Unknown
  • Sen. Mark Begich – AK - Unknown
  • Sen. Michael Bennet - CO - Supporter
  • Sen. Jeff Bingaman – NM - Unknown
  • Sen. Barbara Boxer – CA - Supporter
  • Sen. Sherrod Brown - OH - Supporter
  • Sen. Roland Burris - IL - Supporter
  • Sen. Robert Byrd – WV - Unknown
  • Sen. Maria Cantwell - WA - Unknown
  • Sen. Benjamin Cardin - MD - Unknown
  • Sen. Thomas Carper - DE – Unknown
  • Sen. Robert Casey – PA - Unknown
  • Sen. Kent Conrad - ND - Unknown
  • Sen. Christopher Dodd – CT - Unknown
  • Sen. Byron Dorgan - ND - Unknown
  • Sen. Richard Durbin – IL - Unknown
  • Sen. Russell Feingold - WI - Unknown
  • Sen. Dianne Feinstein - CA - Supporter
  • Sen. Al Franken – MN - Supporter
  • Sen. Kirsten Gillibrand - NY - Supporter
  • Sen. Kay Hagan – NC - Unknown
  • Sen. Tom Harkin – IA - Unknown
  • Sen. Daniel Inouye - HI - Unknown
  • Sen. Tim Johnson – SD - Unknown
  • Sen. Ted Kaufman – DE - Unknown
  • Sen. John Kerry – MA - Supporter
  • Sen. Amy Klobuchar - MN - Unknown
  • Sen. Herb Kohl – WI - Unknown
  • Sen. Mary Landrieu – LA - Unknown
  • Sen. Frank Lautenberg – NJ - Supporter
  • Sen. Patrick Leahy - VT - Supporter
  • Sen. Carl Levin – MI - Unknown
  • Sen. Blanche Lincoln – AR - Unknown
  • Sen. Claire McCaskill - MO - Unknown
  • Sen. Robert Menendez - NJ - Supporter
  • Sen. Jeff Merkley – OR - Supporter
  • Sen. Barbara Mikulski - MD - Supporter
  • Sen. Patty Murray – WA -Unknown
  • Sen. Bill Nelson - FL - Unknown
  • Sen. Ben Nelson – NE - Unknown
  • Sen. Mark Pryor – AR - Unknown
  • Sen. Jack Reed – RI - Supporter
  • Sen. Harry Reid – NV - Unknown
  • Sen. John Rockefeller - WV - Unknown
  • Sen. Bernie Sanders - VT - Supporter
  • Sen. Charles Schumer - NY - Supporter
  • Sen. Jeanne Shaheen - NH - Supporter
  • Sen. Arlen Specter – PA - Supporter
  • Sen. Debbie Stabenow - MI - Unknown
  • Sen. Jon Tester – MT - Unknown
  • Sen. Mark Udall – CO - Unknown
  • Sen. Tom Udall – NM - Supporter
  • Sen. Mark Warner – VA - Unknown
  • Sen. James Webb – VA - Unknown
  • Sen. Sheldon Whitehouse – RI - Supporter
  • Sen. Ron Wyden – OR - Unknown

    This isn’t about politics. At least it’s not for me. For some people, the issue of healthcare is a political one. For me, this is about people, about the basic human right of people to be able to obtain access to basic healthcare to meet their needs. Without reform to the very broken system currently in place in the U.S., the health insurance companies will continue to price gouge customers while providing less and less coverage and issuing more and more rejections for various services, tests, procedures, and surgeries.

    Having had my insurance reject valid claims and having filed an appeal, having had my appeal rejected and then having filed another appeal and having won… I know that insurance companies are excellent at obstructing patients’ paths to needed care, superb at hindering patients’ ability to access care that IS covered as per their contract, and masters at rejecting claims that are completely valid (in the presumed hope that patients will give up and not file appeals, thus resulting in the patient going without the needed care or paying out of pocket for it while the insurance pays nothing for it).

    These practices must not be allowed to continue. A public option will finally force competition so that health insurance companies cannot continue to bully patients the way they have become accustomed to. People who are fortunate enough to have never been seriously ill may not realize just how little the average health insurance company actually covers these days.

    ANYONE can get sick or injured and can quickly discover just how dysfunctional the current system is. No one is immune to the risk of suddenly discovering what so many people already know… that the health insurance system in the U.S. is profoundly flawed, that those lucky enough to have the flawed coverage offered by a typical health insurance company may at some point discover just how little their health insurance premiums are worth, that far too many people cannot afford access to health insurance at all, and that action must be taken to reform this system as soon as possible.

    The longer this mess drags on, the more difficult it becomes to fix and the more people suffer. After decades of talk about reforming the broken system, steps in the right direction are now visible. Every voice matters. I have been busy writing letters to Senators (not just asking for them to support the letter to House Majority Leader Harry Reid but thanking my Senators once both had signed on, to let them know I appreciate them standing up for people like me).

    If you are like me, you’re chronically ill and you are all-too-familiar with how very expensive it can be (even WITH insurance) to obtain needed healthcare.

    I am not naive enough to think that everyone reading this agrees with my perspective and I’m sure that some people reading this don’t. I am writing this post because I am passionate about healthcare access for all, I am sick to death of learning about example after example of health insurance companies making record, windfall profits while patients suffer without care or with insufficient care to meet their needs, and I am bone tired of the decades of TALK about fixing this problem without ACTION to make it happen.

    While I am fully aware that not everyone is in agreement on how to best go about addressing the numerous problems with the healthcare system as it currently exists, the stakes are too high for me not to post this plea for people to contact the Senators marked “unknown” above and request that they become supporters of calling on Majority Leader Harry Reid to pass the public health insurance option through “reconciliation”.

    Healthcare reform has been discussed for decades. I believe there will NEVER be a time when everyone agrees on how to proceed. This matter is far too complex and is attached to far too many special interest groups for there EVER to be a time when everyone will agree.

    As a chronically ill patient who almost lost my house not once… not twice… but three times due to out of pocket medical bills WITH insurance, I have witnessed firsthand how broken the current system is. Since I write a blog about chronic illness topics, I cannot stand by and watch the events unfolding without sharing my perspective.

    I don’t ask everyone to agree with me but I do ask everyone reading this to understand that I know from personal experience just how severely the currently system is stacked against so many. I have friends who have no health insurance at all. This saddens me.

    This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

    “Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

    Thank you for your blog comments!

    New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

    >> Stumbling & tweeting my blog posts is greatly appreciated! <<

  • February 21, 2010   4 Comments

    Dysautonomia Series Re-post

    Here is a Dysautonomia Information Network trailer for their documentary, “Changes: Living with Postural Orthostatic Tachycardia Syndrome:

    My dysautonomia series has been one of the most highly visited groups of posts here. So, I’ve decided to re-post it. I am unaware of whether endometriosis and dysautonomia are considered by medical science to be co-existing conditions. What I do know is that I have encountered many women who have both endometriosis and some form of dysautonomia.

    There are many types of dysautonomia (i.e. postural orthostatic tachycardia syndrome or “POTS”, vasovagal syncope, and neurocardiogenic syncope… to name a few). The video above pertains to postural orthostatic tachycardia syndrome (POTS), which again, is just one form of dysautonomia.

    WWW_by_ilco_1105359_internet

    It is amazing to me how many people have reached my blog while searching for dysautonomia information. It really makes me wonder how many people have it! Generally speaking, there are people reaching my blog daily by searching for information on dysautonomia, using a variety of search phrases. I originally posted the series on dysautonomia back in August (2009). It is unusual for blog posts that are four months old to be getting daily traffic. It truly makes me wonder how many people are affected by dysautonomia.

    Series Re-post:

    The easiest way to view the dysautonomia series is to click here:

    The ‘Chronic Healing’ Dysautonomia Series

    This link will route you to the fifth post. It links back to the four posts that preceded it.

    This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

    “Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

    Thank you for your blog comments!

    New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

    >> Stumbling & tweeting my blog posts is greatly appreciated! <<

    December 17, 2009   8 Comments

    Scam Busters

    This post is a partial reprint of an article I read on The Canary Report.

    While the full post there was more detailed and got into specifics involving claims made by companies targeting multiple chemical sensitivity (MCS) patients, for the purposes of this post I have decided to focus on the ten warning signs of a scam, as compiled by Lourdes Salvador and Linda Sepp, and as previously published HERE.

    This list, in my opinion, is applicable to nearly any chronic illness patient because the tips for spotting scams listed here are so universally used. This fantastic list is far more concise than I could have written. Yet it captured something I have been wanting to blog about for some time. Longtime readers know that I have blogged about scams and false cures before. However, this list nicely sums up what you, as a chronically ill patient, can be on the lookout for.

    Reprinted with permission from:

    Lourdes Salvador of MCS America
    AND
    Linda Sepp, a contributor for The Canary Report

    CAUTION_IMAGE_by_ilco_985260_high_voltage_7

    Ten Warning Signs of a Scam:

    1. The Promise Of A Quick And Easy Cure

    2. Presence Unproven Patient Testimonials & Emotional Appeals Instead Of Science

    3. Claims To Cure Many Ailments Which Have No Cure In Medical Science

    4. It’s Not Sold In Stores

    5. It Has Undisclosed Ingredients Or Content

    6. You Have To Keep At It To Get Results

    7. It Doesn’t Work Because You Did It Wrong

    8. Science Hasn’t Even Bothered To Discredit It (No Threat To Pharmaceutical Sales)

    9. The Seller Lacks A Medical Degree Or Similar Qualification

    10. It’s Too Good To Be True

    Copyrighted © 2009 MCS America

    ~~~~~~~~~~~~~~~~~~~~~~

    I am very grateful to Susie Collins for posting about this topic and to Linda Sepp and Lourdes Salvador for writing about this very important topic!

    This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

    “Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

    Thank you for your blog comments!

    New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment. ;)

    >> Stumbling & tweeting my blog posts is greatly appreciated! <<

    December 5, 2009   11 Comments