Helping women with chronic illnesses

Hurting and Healthcare

I have not blogged lately because I am hurting. I am in severe pain and my energy level is not good. I blogged previously about the fibromyalgia flare-up I am having in the post: Fibro Fall.

In order to feel productive (one of the things that really keeps me going), I have been spending almost all of my online time lately on twitter. I have actually been quite busy on twitter. It just seems to be the best place for me to spend my limited online energy lately.

Another reason I have been on twitter so much is my adamant thoughts regarding healthcare. There is a vast amount of information regarding healthcare available on twitter. I am acutely aware that some people have very different thoughts about this issue than I do. I respect that different people have different opinions on this issue. Unlike some of the twitter users I have observed online, I never resort to name-calling. I think it’s counter-productive. When I tweet about healthcare, I send out facts, relevant quotes, videos, patients’ stories, doctors’ stories, etc.


I have taken a stand on it for a number of reasons. After (WITH INSURANCE) almost losing our house three times, having to give up my car, and being bankrupted… all due to medical costs (i.e. uncovered expenses, co-pays, deductibles, and at certain points COBRA payments to stay insured during a job switch), I have some very strong feelings about healthcare.

I have wanted to blog about this but have not been able to summon up the energy to write a post I feel would do it justice. So, if you are interested in checking out the numerous messages I have been sending out on twitter in recent weeks, you can find me on twitter HERE:

Visit me on twitter πŸ™‚

The thing I love about twitter is that I can send short messages that are helpful, productive, and meaningful. At the same time, it takes less energy for me to get things accomplished on twitter (when I feel this sick) than if I were to sit down and try to write a comprehensive, coherent blog post. Many of my posts require some amount of research and even those that don’t demand a level of concentration that I have been lacking lately.

It’s almost as if I can use twitter with short bursts of energy but blogging requires me to have a more sustained energy level. My fibromyalgia, in particular, has been making it hard for me to summon up the energy to blog.

In addition to my ongoing fibromyalgia flare-up, my interstitial cystitis has been flaring too. (Though the bladder instillations help immensely).

Speaking of bladder instillation, a company which has repeatedly stolen my copyrighted work has posted my Bladder Instillations Rock on its site. I just emailed the company about removing my work from their site.


In summary, I started this post with the title “Hurting” and the plan to write a quick update on how I am feeling with various illnesses (especially fibromyalgia) flaring up now. However, as I wrote… I felt it necessary to also include a reference to the work I have been doing on twitter regarding healthcare. Make no mistake, I have been literally working on this issue.

I am extremely passionate about this issue. People are uninsured, under-insured, losing insurance, and… yes… even dying. So I am doing less blogging and more tweeting partially because I am too drained and exhausted to write a complete post. (For example, today I will need to somehow find the energy to take a shower when I finish writing this and it will be a Herculean effort to do so). I am doing less blogging partially because I am so busy on twitter with healthcare and I feel more able to make a difference there. So I am making a choice where to focus my limited energy.

Thank you for your patience as the frequency of my blog posting is decreasing a bit at this time. I am following my heart and my gut to do what I believe will help the most people.


This post was written by Jeanne at Copyright Β© Jeanne β€” All rights reserved.

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Reading: Hurting and Healthcare


1 Dorian aka coffeesister |_|)No Gravatar { 10.05.09 at 5:18 pm }

Not only do I thank you for your honesty regarding healthcare (& the rampant lack or cost thereof) but thanx too for so well explaining why a committed blogger can & would focus on Twitter instead. I have never achieved the consistency on my blog you have but always have posts in the works that I am often unable to finish. For that matter, not every tweet sees the light of day either but, when I can choose to do more than nothing, twitter wins; Here’s to the good fight, real healthcare reform & tweets that just may make a difference.. (|_|*cheers*|_|)
.-= Dorian aka coffeesister |_|)´s last blog ..30 Things About My Invisible Illness You May Not Know (for Invisible Illness Awareness Week) =-.

2 AllisonNo Gravatar { 10.05.09 at 6:01 pm }

Thinking about you and hoping you find relief soon!

The healthcare “debate” is a very heated topic right now. I’m not sure where I stand. I know there needs to be change, I’m just not confident in the proposed changes.

I’m so bad at twitter, but, I’ll try to catch up!
.-= Allison´s last blog ..Endometriosis and Pregnancy =-.

3 YayaNo Gravatar { 10.05.09 at 7:41 pm }

It’s good to be passionate about something. And as we’ve said before, these types of attacks are really hurting those who don’t have the energy to fight back. It’s just not fair.

I just started tweeting again…I’m so behind on the lingo.
.-= Yaya´s last blog ..Monday’s Muse: Potential Birth Mother =-.

4 SonjaNo Gravatar { 10.05.09 at 8:03 pm }

Thinking of you!
.-= Sonja´s last blog ..Sinus Recovery Update =-.

5 JeanneNo Gravatar { 10.05.09 at 10:37 pm }


Thank you for your kind words. (Granted, your words are always kind). I know that you and I have had plenty of conversations regarding the issue of healthcare.

For anyone reading this who has not yet read Dorian’s husband’s post Sickie-Poo, I highly recommend it. It’s an amazing post on many levels (one that patients and caregivers alike can appreciate). I’ve been tweeting about it ever since he posted it as a “must-read”. (Don’t miss the interesting comments to it either).

Dorian, I knew that you would relate to what I was trying to say about having enough energy to use twitter but not enough to blog – because you tend to do the same thing I do… tweet using the short energy bursts and then blog when able. So, I’m not surprised you knew what I was getting at. πŸ™‚

I love your blog and there is no rule that says blog posts must be posted at xyz intervals. I have so many more ideas of what I want to blog about than I am ever able to actually post. It can be quite frustrating.

I think that is what I like so much about twitter. I feel like I can make a difference faster there for certain things. I’m glad you linked to your twitterpage because you have some amazing messages on twitter.

I agree we need real healthcare reform and I honestly do believe that the information shared on twitter on this issue does have impact, one way or another. (You tend to get that feeling when Congresspeople, who are not even from your state, start following you on twitter out of the blue… apparently based on what you’ve been tweeting). I know I have learned a great deal and accessed information I might not have found elsewhere. (Obviously, you can’t always believe what you read and fact-checking is crucial).

The rapidity with which information travels on twitter is really impressive. For example, I can’t tell you how many times I have caught part or all of a live feed regarding something related to healthcare simply because someone I follow on twitter sent out a message that I happened to see in time to click the URL link they sent out in the tweet… and that took me to the video. Twitter really is amazing for disseminating information (and gathering information).

I know you are very, very sick and I can’t begin to imagine what’s it’s like to be that sick and not have health insurance. πŸ™ (I know how terrified I was when there was simply the threat of losing our health insurance… knowing that pre-existing conditions would then render me uninsurable). Truly, I really can’t imagine being as sick as you are and not having health insurance. I’m so sorry this looms over you (and I know it does)!

I’m sending positive energy your way!!


6 JeanneNo Gravatar { 10.05.09 at 11:33 pm }


Thank you! Ditto!

I just read your blog post and left you a comment regarding endometriosis and pregnancy. That was an excellent research article that you posted! Good find! πŸ™‚

Yes, things have certainly gotten heated. You are not alone in being confused about the best way to proceed. In my humble opinion, much of this atmosphere of confusion is because the health insurance companies and pharmaceutical companies have so much money and are so powerful that they are capable of intentionally spreading misinformation that ratchets up confusion, fear, and uncertainty.

There are 6 lobbyists for every 1 Congressperson in Washington right now. It’s mind-boggling that these companies have enough money at their disposal to have 6 people representing their interests for every 1 Congressperson. Then there is the issue of health insurance companies and pharmaceutical companies donating to the campaigns of legislators on both sides of the aisle. The first time I viewed a link with graphs showing just how much money was given as campaign contributions to Congresspeople from both parties, I was a bit taken aback. I don’t consider myself naive at all but these are massive amounts of money.

My personal outlook is that healthcare reform has been discussed for decades and decades but the problem just keeps getting worse and worse.

Many people lose insurance each day (the last number I heard was about 14,000 Americans lose health insurance per day). People are dying because the treatment their doctor ordered was denied for coverage by the health insurance company to which they faithfully pay their premiums. Then, there are people who can’t afford health insurance at all (many of whom I have gotten to know personally through blogging and interacting, like Dorian… who also posted a comment here). I saw a video yesterday of a mother of twins who got cancer at 4 years old. Their insurance company wouldn’t pay for their follow-up treatment… claiming it was unnecessary. (That is the Reader’s Digest version of the story). The list goes on. It’s very, very sad to me.

In the meantime, health insurance company CEOs’ average salaries are much higher than the “bigwigs” on Wall Street. (I just sent a tweet today with an article that has the exact numbers. It was absolutely appalling)!

I understand it can be hard to be confident in the proposed changes… Between the special interests’ spin and the way the media has handled things, I personally believe the message gets skewed and misunderstood. Also, any proposed “solution” will not be perfect. After all, the “system” is an utter mess. It is complex, confusing, riddled with loopholes (like pre-existing conditions)… To “fix” it perfectly is… in my mind… an unrealistic goal. There is just so much that needs improvement.

However, I personally am committed to speaking up for what I believe is the best available option. I hope my voice, combined with those of many others, will help make a difference in improving things. Having almost lost everything WITH insurance (insurance that was expensive and supposedly good), I have a different perspective than I might otherwise. We found out the hard way how ugly things can get WITH insurance. I wouldn’t wish it on my worst enemy!

Anyway, sorry to go on. Once I get going about healthcare, it’s hard to dial it back.

As far as twitter is concerned, give me a holler if you have any questions. I used to totally “not get” twitter back in the days when I first started using it (2007). Now, it makes worlds more sense to me. So, I’ll be happy to help if you get confused on anything.

It sounds, though, like you are on bed rest for now. So, please take care and keep getting lots of rest. πŸ™‚

I am sending positive energy your way!!!


7 JeanneNo Gravatar { 10.05.09 at 11:46 pm }


Well, I have no lack of passion on this. I agree with you that some of the people most affected are either too sick to effectively speak up for themselves or they simply don’t have the energy to fight for healthcare reform (even though it would help them). The way things are set up now is just so very flawed. In my opinion, the word “fairness” is simply not in the lexicon at health insurance companies. Profits for the health insurance companies? Yes. Fairness? No… Not in the lexicon.

Anytime you have twitter questions, you know where to find me. πŸ™‚


8 JeanneNo Gravatar { 10.05.09 at 11:52 pm }


Thank you! I hope you are recovering well from your surgery! I appreciate your kind messages on twitter too!

Please get lots of rest and enjoy that soup! πŸ™‚


9 JoNo Gravatar { 10.06.09 at 4:30 am }

I feel so lucky to be living in the UK where healthcare is free at the point of use – unless you choose to pay of course. One of the benefits of a publicly funded system is that the patient is not subjected to a barrage of un-needed tests or drug regimes as cost saving is always a high priority.

I hope this flare passes and you get back up to speed soon.
.-= Jo´s last blog ..If anyone thinks we are a bunch of slackers . . . =-.

10 JeanneNo Gravatar { 10.06.09 at 9:27 am }


It has been interesting over the last many months to talk with people like you about what the healthcare systems outside the U.S. are really like. If I didn’t blog, use twitter, etc… I would be relying primarily on the media to shape my perception of what healthcare is like outside the U.S. (The media, in general, presents a skewed view, in my opinion). I am grateful to be able to get the perspective of real, live people like you… who are fortunate enough to have universal healthcare.

Thank you. I hope so too. This particular fibromyalgia flare came on fast and furious and I am very sore. Taking a shower is a huge undertaking. My body just hurts from head to toe. It’s frustrating.


P.S. I am going to send you a MyBlogLog message. If you’re like me, you may not check messages there often. So, I just wanted to give you a heads up so you’ll see it. Thanks! πŸ™‚

11 AmandaNo Gravatar { 10.06.09 at 3:36 pm }


I was just thinking of you last night and wondering how you were and that I should message you… so sorry to hear you’ve been feeling so rotten! I don’t use twitter (I know I would most likely get addicted and I can’t cope with it when I want to spend less time online, especially now I am doing more computer work in my job role and my head hurts by the end of the day) but I am sure I miss a hell of a lot of things, so please excuse my ignorance and the breaks between my comments – I do think of you!

Tim has a major thing about the US medical system (esp as he works in care over here)… whereas I sort of sit in the middle of the road – I know if you can afford it you have great healthcare (I guess we do too if you can afford it, but we don’t have medical insurance the same as you do, so unless we want to pay out tons of money every time we want to see a specialist we have to wait until a general practitioner decides we need to see one – hence my many years of waiting to see a gynaecologist!) yet on the other hand I know we cannot knock the NHS because it means any citizen in the UK (or even when we travel abroad) can get free healthcare at any time (we pay for medicines, but not consultations, birth control or hospital stays/operations). I would hate to be in a situation where choosing to look after my health meant risking losing my home – which is half of Tim’s anger at the system (seriously, you don’t want to get him started and he doesn’t even live there and experience it!!) The information you and others pass on really highlight how lucky we are to have free healthcare paid for by our taxes (however much we complain about long waiting lists, postcode lottery (when the treatment you get depends on where you live – yeah its not totally without bias over here) and lack of specialists etc).

I do hope you start feeling better soon! Sorry I haven’t been in touch… I finally started to feel human again and was taken over by deciding what sort of wedding we might have and all those girly things and then “whoomph” I got struck down by a mystery bug which made me remember I’m not back up to full strength just yet and reminded me that I’d forgotten to check in for a while on you and several others *blushes*… I blame the wedding ;o)
.-= Amanda´s last blog ..Roma – beautiful, romantic Roma =-.

12 JulieNo Gravatar { 10.06.09 at 6:54 pm }


I feel for anyone who has large medical bills,it does seem unfair that you have something else to worry about on top of everything else…i like jo live in the uk and am very lucky indeed to have private healthcare provided by my employer.

Hope your flare-up settles soon.:)

13 Jazz BakerNo Gravatar { 10.07.09 at 12:13 am }

Thanks for sharing. Your experience reminds me of how fragile and vulnerable we all are. I am encouraged by your strength and determination to persevere in your time of difficulty. You are an inspiration for those of us who sometimes fail to let our light shine in what seems like darkness. Please continue to tweet and blog as your words are nuggets of hope for those of us suffering with invisible illnesses. You certainly are a blessing. Although the fate of Health Care Reform seems uncertain the truth is victory is near… it may not come as easy as we think, but I believe it will happen. Keep on being a voice for this overdue reform.

Allow me to share the following poem by A.G.Walton with you.

Happiness is something more ?Than what a man lays in store ?More than prestige, ?more than power?Or fleeting pleasures of the hour.
Happiness is kindness living In friendly hearts, ?in selfless giving A will to feel with one another?And treat a neighbor as a brother.
It is a faith,?the nobler plan That seeks the good in every man. ?That leaves all censure unexpressed ?Forgive the flaw and see the best.
Happiness is gold refined ?Within the heart, ?a state of mind No need to travel, ?near or far You seek and find it.. ?where you are!

14 JNo Gravatar { 10.07.09 at 8:39 am }

First, I really hope you start feeling better soon!
Second, As someone who has been without insurance since before my lupus was diagnosed I see the definite need for something to be done, as lupus is an illness that can get me kicked back off insurance (even through my husband’s job) as soon as I try to use the insurance for it. Due to the lack of insurance I have symptoms that can’t even be checked into because we can’t afford the tests, and the doctor is doing the best she can to treat me with minimum tests. We have also had to go through the meds the doctor wants me on and choose what was “most important” to keeping my body functioning and me from being in bed constantly. There are a couple other meds she’d like me to be on to keep everything working properly, but what they treat (while dangerous) is livable, so we choose to have me on the medications that I have to be on to stay out of bed. And the only reason I’m even able to afford to see any doctors or get any treatment at all is a state program for people who are uninsured but don’t qualify for state or federal insurance. If I didn’t have that I don’t know what kind of position I’d be in… but it wouldn’t be pretty… I’m sure I’d be in bed all the time and in even worse pain than I am at this point. I’m one of the “lucky” uninsured. If any of us can be considered lucky. The medical bills are stacking up, my credit score is going down, but at least I’m getting the treatment I need. It’s ridiculous that those of us who are ill are the ones who have to fight the hardest for what we need and the system is slowly killing us off because we have to use what little energy we have trying to get the care we need, and can’t take care of ourselves. Our families and homes suffer because we can’t take care of ourselves, let alone them due to how much we are having to fight to get care from doctors, and we sink lower and lower with how we feel each time we have to fight.
.-= J´s last blog ..What a week … =-.

15 JeanneNo Gravatar { 10.07.09 at 9:52 am }


I’ve been thinking about you too. It’s nice to hear from you. πŸ™‚ It has been interesting with the fibro in particular lately. It is what it is. I’m managing the best I know how. I understand the fear of “twitter addiction”. I’m sorry your head hurts by the end of the day at work. How is work going, anyway? You are anything but ignorant. You don’t owe anyone any explanation for how frequently you’re online. There’s no law that says you have to log x amount of time. How is engaged life treating you? πŸ™‚

So even though you guys live in the UK, Tim works with the US medical system through his work? I don’t mean to be nosey. I was just curious.

Things have reached the point where even people who have “good jobs” with “good benefits” (good defined as good benefits compared to comparable businesses) may really have lousy health benefits. Many companies now have none. They can’t afford to insure their workers. Then there are other situations… For instance, my husband works at a well-known, large corporation. However, since he was hired as a contract worker as opposed to a direct employee, he is eligible for ZERO health benefits. We had to find a way to purchase health insurance privately. This is very EXPENSIVE. This (a company having no health benefits) is not limited to contract workers.

I have friends who work at a large company (known worldwide)… who have worked there 20+ years and every year their health insurance plan gets lousier and lousier. Their deductible goes way up, their coverage goes way down, their co-pays go up, and the amount they pay (as opposed to the employer) towards the premium just skyrockets every year. We are talking deductibles of $3,000 per family per year! Until that deductible is met, NOTHING is covered by insurance. It’s all out of pocket up front. All of these examples are regarding people who somehow can afford health insurance. (Far too many cannot… for obvious reasons). It is shameful.

I certainly understand where it would be frustrating to have to be slowed down by needing a general practitioner’s referral to see a gynecologist. I’m sorry you had to go through that. Yes, I agree with you that the “free healthcare at any time” you referenced is pretty hard to knock, though! Wow! It even works when you travel abroad? That’s amazing! I once got injured on a trip to California and needed x-rays. It was the biggest deal with phone calls and paperwork that you can imagine to deal with the insurance being from another state. Then they billed me wrong (a ton of money) and I spent days on the phone getting the bill fixed. It was awful.

To not have to pay for operations boggles my mind. After having 7 laparoscopies for endometriosis, I know how expensive those surgeries are! (Some of the ones in the early years were mostly or partly covered but the latter ones were a different story… as it gets worse every year here with health insurance. Less and less is covered as time goes on).

Yes, when I say we almost lost our house three times, I mean we really had some cliffhangers. You talk about stress! It was just awful!!! The third time was the worst. The bank actually started the foreclosure proceedings and we were served papers and everything. Yes, that’s right… our bank sued us for foreclosure. We were like one of the families they show on the news here all the time regarding foreclosures. This was because of medical expenses. My medical expenses. (Yes, I felt guilt even though it’s not my fault I’m sick). It was NOT fun! We were very fortunate and managed to come up with enough money to get the house out of foreclosure at the 11th hour but it was not easy and I was a nauseated, freaked out, crying, scared stress ball during that time. This, of course, was not good for my health. It was just terrible!

I can only imagine Tim and I could have a spirited conversation about healthcare in the US! It’s interesting that it has him that riled up when he doesn’t live in the US (and have to use this system). I guess that could be seen as an indicator of just how flawed the system here really is.

Yes, I think hearing other perspectives is helpful. Having something to compare things to can be useful.

Yes, I hope so too. I don’t mean to sound negative but I have a nagging feeling that this is looking to be a bad fibromyalgia year for me… based on the evidence so far. Also, I have already had 3 incidents where my Reynaud’s turned my fingernails (nail beds) purple. Considering it’s only early October, that’s a bit concerning too. So, my body is definitely feeling the weather changes. Let’s put it that way.

I hope that you are getting enough rest and not working too hard. Please don’t apologize. I know you are busy. I’m just happy to hear from you whenever you can pop in. πŸ™‚ I’m sorry about your mystery bug and I hope it’s gone or on its way out!

Thanks for stopping by and don’t work too hard on wedding plans. It’s just ONE DAY. It’s the marriage that counts… not the wedding so much. I know that may sound harsh but I also know that wedding planning can take a person over. I just don’t want you getting really sick.

Take care,



16 JeanneNo Gravatar { 10.07.09 at 10:06 am }


Yes, it really is unfair. One year when we went to do our taxes at the end of the year we saw in black and white how much we were spending on healthcare. (Part of that year my husband was between jobs after being laid off… so we had to pay full premiums with COBRA health insurance). Including the COBRA premiums we paid that year plus co-pays, deductibles, uncovered medical expenses, etc… we spent over $14,000.00 out of pocket in one year!! That is a LOT of money! The last few years, medical expenses have basically ruled our lives. Every financial decision we make seems to have to take healthcare costs into account. It is incredibly frustrating and anxiety-producing. πŸ™

I am happy for you that you have private healthcare provided by your employer… That is awesome! πŸ™‚

Thank you so much!

Take care,


17 JeanneNo Gravatar { 10.07.09 at 11:25 am }

Jazz Baker,

Thank you for your kind words! I agree with you that we are fragile in the sense that even the healthiest person can become ill/injured/disabled at any time (whether they realize it or not). Sometimes I think people feel invincible… until something happens to show them otherwise. I think those who are fortunate enough to be healthy (and therefore need very little interaction with health insurance companies, HR departments at employers who interact with health insurance companies, healthcare professionals, hospitals, labs, pharmacies, etc)… may not totally comprehend what chronically ill people go through just to get through the day. I believe it’s hard for people to comprehend things with which they have no experience.

You really are very sweet. I appreciate very much the support that you have given me on twitter (and the review you posted on StumbleUpon)! πŸ™‚ I make an effort to focus on positivity and hope. To me, this is key to managing my own symptoms and trying my best to support others who are ill. I agree with you that healthcare reform will happen. I really do.

Thank you so much for sharing the poem. That was just lovely!

Take care,


“Once you choose hope, anything is possible”. ~ Christopher Reeve

18 JeanneNo Gravatar { 10.07.09 at 12:19 pm }


Thank you. I hope you feel better!!!

I know you have had a terrible struggle with not having health insurance!! πŸ™ I am so sorry for all of the heartache you are going through. You have been through so much and it breaks my heart that you are not getting the healthcare you need now. I am so sorry for all of the stress you have been through navigating this very broken system. πŸ™ I know that you still have terrible pain despite the fact that the medication is keeping you from being bedridden.

I know how fast those medical bills can stack up with insurance. πŸ™ I am also all-too-familiar with watching my formerly stellar credit rating take a nosedive all because of medical expenses.

Like you, I have gotten to the point where I focus my energy on getting the treatment I need. Period. I can’t drive myself mad obsessing over how I will be able to pay all of the medical bills on time. The bills get paid as quickly as we can possibly pay them. Period. I am done with losing sleep over it and feeling nauseous every day. I have had to make peace with the fact that my health conditions combined with the current healthcare “system” add up to the fact that I will continue to have a pile of medical bills. That’s just the way it is.

I can cry about it and get upset (like I used to) and still be late on my bills… OR I can make peace with the situation and still be late on my bills. I have made a conscious choice to do the latter. It’s not that I am a deadbeat or I don’t care. It’s that I am incapable of keeping up with the bills. That is with insurance.

Years ago, before I got so sick… I never paid a bill late a day in my life. Literally. (I’ve been chronically ill since I was 13 years old but it wasn’t until many years later that my endometriosis got joined by other illnesses such as fibromyalgia, interstitial cystitis, neuropathy, obstructive sleep apnea, and Reynaud’s… just to name a few).

It wasn’t until my illnesses started multiplying exponentially that we really started to feel the pain of the medical bills. (Granted, I’ve had 11 kidney stones and the 1st lithotripsy/ESWL procedure I had done for stones was something like $6,000 with an 80%/20% co-pay. It occurred when I was still in college. So, I was very lucky that my parents helped me out because I didn’t have the 20% co-pay even though I did have insurance through my employer. They also helped me with the co-pay for my 1st laparoscopy when I was 23… because I could never have paid for it without their help based on what I made while I worked my way through college).

I completely agree with you that it’s ridiculous that those of us who are ill (and most vulnerable) are the ones who have to fight the hardest for what we need. I also agree that the “system” would have an increase in profits for each patient that does die… That would be one less person for them to “somewhat cover”.

It is very true that there are times (I know there have been for me) where there is NO ENERGY left to call insurance companies about rejected claims or other problems. Sometimes I am just too sick/tired to fight! I detest when this happens because I know the insurance company is getting away with stealing our money. This also leads to me having less money available for the next bill because the insurance company messed up on the prior claim in some way. If I had a dollar for every hour I have spent on the phone with insurance companies, I’d be really rich.

One time, my claim was rejected and I appealed. It was re-rejected. I appealed AGAIN. That time I won. The thing is… should I have had to expend that energy? Of course not. It is reprehensible. Patients shouldn’t have to go through an appeals process twice to get something they were entitled to all along!!

You are very correct that our families and homes DO suffer when we waste energy messing around with billing errors and health insurance companies… when we could be caring for things in our homes or spending more time with our loved ones. That is SO true! I also agree there is a cumulative effect… Each healthcare-related fight saps some more energy out of us. The last thing we need is that! Chronically ill patients have precious little energy. To waste it trying to obtain appropriate healthcare is ironic and very sad. It’s the whole notion of getting ourselves sicker because of how much time/energy is spent fighting that boils my blood.

Thank you for your insightful comments. I know it takes lots of energy to write sometimes (especially on such an emotional topic). I appreciate you taking the time to comment and I am sending positive thoughts your way!!! You have been through a great deal! πŸ™ Hang in there. YOU ARE STRONG! πŸ™‚


“Of all forms of inequality, injustice in health care is the most shocking and inhumane.” ~ Rev. Martin Luther King, Jr

“America’s health care system is neither healthy, caring, nor a system” ~ Walter Cronkite

19 Jannie FunsterNo Gravatar { 10.07.09 at 1:20 pm }

It’s amazing how Twitter can work in the small bursts it does to do such powerful things.

And, you know you’re getting really really good when people are stealing your content, Jeanne. Holy cow!

I am certainly for Health care reform, yes!! Our family has been without any kind of insurance for over 5 years because of the cost, just been lucky we have not been hit with anything major, but we know the possibility looms, which you and your family have been hit with the hard reality of. And your ensuing battles and energy-drain.

I’d like the chance to read the current proposed bill online and wonder why it’s “too difficult to upload.” I’m not even sure I’d understand it but I’d be willing to give it a try.

Jeanne, I hope you will rest and feel much much better.

I was just going to lie down when I and saw your wonderful comments on my blog and had to pop over here.

Now, I’m going to try to ease my little head, bye

.-= Jannie Funster´s last blog ..Only 24 Shopping Days Until Halloween! =-.

20 JeanneNo Gravatar { 10.07.09 at 3:00 pm }


Yes, twitter really is amazing.

Possibly just unlucky. Actually, it’s a company that makes this type of thing a general practice. So, I’m not alone.

Yes, healthcare reform is so needed!! I am very sorry to hear that your family is without health insurance. πŸ™ It really is abominably expensive. Having that fear of something happening is terrible. Yes, we had our own little “medical bill nightmare reality show” going on for a few years there. Actually, it was big… not little! (We are not out of the woods by any means).

It is very scary when you honestly don’t know if you can hang onto your house or not. This is also troubling when the very illnesses that caused the healthcare expenses that led to the late mortgage payments in the first place are ongoing because they’re chronic!

Things are finally a little calmer now… but if my husband got laid off tomorrow, that would be a very different story indeed. We haven’t forgotten how quickly and easily things can get really ugly. Yes, the battles and energy-drain are really beyond words. It has been a nightmare, really.

So it gave you an error?

I am trying to fit some rest in here and there. I’m probably not doing quite as good a job in this department as I should. Things have been really busy lately!

I enjoyed visiting your blog today. πŸ™‚

Hope you are getting a nice nap!


21 AmandaNo Gravatar { 10.07.09 at 3:41 pm }

Hi Jeanne,

no Tim works for the NHS but he has come across articles in his work comparing it (the NHS) to other healthcare systems in detail and so he researched some more into it and now he cant talk about it without getting angry – I guess seeing people really ill every day makes you realise just how many people would be affected by the lack of our NHS (Tim works in neurosciences, mainly with epilepsy patients but comes across people with neurological issues caused by trauma, illness, stress etc – stress is a MAJOR factor in many things!)

Yes operations, scans, tests… all free, BUT it also has the effect of making it harder to have them because the NHS does have to budget for them all, so waiting lists can be long (I waited 4 years for dental work needed at the hospital as it was too complicated for my dentist) and they will try everything else before sending you for scans and certain tests… like I say, the postcode lottery as it is known can cause issues… we are lucky in Cambridge as the hospital here has a lot of funding and research connected to the university but in Nottingham where I had my first lap I had an awful time (sitting in a room in a circle of women waiting to go to theatre, talking to the doctor at the side of the circle, laying on a trolley in the middle of it waiting for a bed…) it was all because of less funding! So money still does affect healthcare, but not like in the US… we WILL get treatment, no matter what, without fear of losing our homes!!

Yes healthcare abroad is on the whole free too… well in Europe you take a health card with you when you travel and the NHS deals with payments, I forget how it works out of Europe, but Im pretty sure you may have to pay out of pocket at first but be einbursed (but don’t quote me on that… I’ve never used medical care other than in Europe).

The wedding planning is fun… I have 2 years to plan and am enjoying discussing ideas with my friends and family! We want an informal wedding wit old fashioned, rustic country charm, that we can pay for outright (hence the two year wait) and we’re spreading it over 2 days (one for the legal ceremony and close family only and one for all our guests with our own blessing and a buffet). Far more exciting than stressful, I want to enjoy the whole process, not stress… do enough of that at work!!
.-= Amanda´s last blog ..Weddings =-.

22 Jannie FunsterNo Gravatar { 10.07.09 at 11:48 pm }

An error? Wait, Jannie — what did I type up there in my comment? πŸ™‚

You mean with the uploading I mentioned?
.-= Jannie Funster´s last blog ..Only 24 Shopping Days Until Halloween! =-.

23 JennNo Gravatar { 10.09.09 at 6:01 pm }

I sure hope you feel better soon. I can relate, my medical bills with insurance has hurt us tremendously. Last year we paid close to $15,000 out of pocket WITH insurance! We lost our savings, and at one time I had so many different medical accounts open that we were paying on, we had to resort to our credit cards just to survive. Thankfully we are starting to get a handle on it again but we still owe to medical providers and we still have the debt as a result. This has played a huge factor in affording adoption. I’ve filed several appeals and it is such a headache. There has to be a better way.

And something is wrong again now but a) getting a doctor to take me seriously is another story (we are getting there slowly but surely and b) I am TERRIFIED of another diagnosis. c) I am also terrified of added medical expenses. Ugh.
.-= Jenn´s last blog ..Welcome ICLWers! =-.

24 Interesting posts, weekend of 10/11 « Feminists with Female Sexual Dysfunction { 10.11.09 at 5:47 pm }

[…] treatments for mental illness besides that tidbit. Jeanne wrote a post at Chronic Healing about Hurting and Healthcare. Oo, she beat me to the punch by a day. Not that it’s a race to get your thoughts out on […]

25 ShaunaNo Gravatar { 10.13.09 at 12:28 am }

Hi sweetie!!

Wow have I missed you and everyone else in our blogging world!!

You basically wrote exactly how I have been feeling. And I applaud your truths in which you write, that is the basis of my being…living and speaking my truth.

I have been living a very crazy life lately that does not match up well with ever-increasing pain. I am always tired and I TOTALLY understand about the effort required to even shower. I finally ‘gave in’ and got a shower chair, as the last time I almost fell out of the damn thing!! Now I need to attach one of the hand-held shower thingies as sitting in the shower with a regular sprayer head does not do the job….always something else to need to accommodate myself in this world it seems!!

Also, on the Health care issue, Jeanne, I understand that also 100%. My health insurance was pulled illegally by someone who had it out for me and she did it to hit me right where it hurts. Now THAT is a person without a heart. Everything possible was done to reinstate it, and the person who had OFFERED and even INSISTED that I keep the insurance as part of our divorce settlement was trying to do everything possible after this illegal act was done. I even have her voice on tape. (NOT THE BRIGHTEST LIGHT BULB if ya know what I mean!) Yet, b/c of this action of pure and simple HATE for me, and her pure insecurity in this world of those that are not to be trusted, (not me if ya catch my drift), I have paid and paid and paid and paid….it has eaten away at everything that I had. I even get comments from family at how I have ‘mishandled money’…um HUH??? I know this is personal, but I can not talk about my experience of being uninsured without going into that story. Yes, lawyers are involved. No, I can’t say any more than I did, but this person has lost their nursing license, (due to addiction and subsequent Diversion of patients pain medications on the floor), showing only that what you do in life has such an effect on that very life. I’d really like to blog about this story that has affected me on so many levels very deeply, but never want to post anything that seems to be attacking. Yet it is a story that is odd, and therefore kind of interesting to read, as I have been told by people that know about this. Hmmm I’ll think of some way some how. :-S

Of course I can not be insured, oh, just a ‘few’ pre-existing conditions, ergo why the ex insisted I take the insurance coverage that he and I were on for years. The whole thing has really screwed up my life, and it is SO SAD to me to know that if she read this, she would be smiling. How can SOME people be SO just outright mean and nasty???

I have not posted since Sept. I miss it, yet every time I sit down to do it, it is overwhelming and I am having a very hard time writing lately with all the pain and resulting fatigue and other side-effects.

I am so sorry that someone stole your work. Outrageous, and one of the chances we shouldn’t have to take to blog!! Glad you are taking action.

I wish I was a ‘twitterer’, but I just can’t get into it. Tried, but it’s not built for me. I am really glad that you found a niche that suits your own personal needs.

I think of you so often, and love you very much.

With gentle hugs and positive thinking for your body to let up a bit on you each day…..

.-= Shauna´s last blog ..It’s Invisible Illness Awareness Week 2009 !! =-.

26 JeanneNo Gravatar { 10.16.09 at 1:34 am }


Sorry for the long delay posting your comment. If you read my blog, you’ll see that I have been very busy.

I understand what you’re saying about Tim’s work and how it affects his views on healthcare.

Also, I inderstand the points you made. Having personally been in a life-threatening emergency where my doctor sent my to the ER and having watched both sides of the hallway lined with gurneys because the hospital had no more space in the ER rooms, I have some idea of what you were talking about with the circle of women waiting for surgery. The hospital I was at had people moaning, groaning, crying, bleeding, and screaming on gurneys in the hallway and I had to walk down that hallway (with my IV pole in tow) to reach the emergency room rest room nearest me. πŸ™ Because I was on an IV flush to clear my body of having too much medication (of a prescribed Rx taken exactly as my doctor ordered but that my kidneys suddenly couldn’t handle), I got to make that “journey of death” bathroom trip quite a bit. I dubbed it the “journey of death” because every single person on those hallway gurneys looked like death. It was a haunting site. I was fortunate to be in an actual room (the type of ER room that is just wide enough to squeeze in a bed) because they had to keep hooking me up to special equipment that apparently didn’t work so well in the hallway. I later was told by my doctor that I had been close to death and my bloodwork showed that the medication has reached potentially lethal levels. I think overcrowding and waits can happen anywhere. Goodness knows we’re not immune to them here.

I’m glad you two are enjoying your wedding planning. That’s great! Wish I could chat more but I am drowning in stuff here and trying to get caught up on some stuff that fell through the cracks while I was busy dealing with the twitter impostor (who is still active).

Take care,


P.S. BTW, a spammer took a snippet of your comment before this one and posted it as a comment from their spammy link!! They were quoting you to me in a new comment on the same blog post! Can you believe it? I was blown away. Pretty nervy, huh??

27 JeanneNo Gravatar { 10.16.09 at 1:39 am }


Yes, uploading.


28 JeanneNo Gravatar { 10.16.09 at 1:50 am }


Thank you. Likewise. Sorry for delay posting your comment. I have been (and still am) very busy dealing with someone engaging in identity theft… My twitter account has been copied (including my picture!) and the impostor is creating all sorts of confusion for people… as impostors do.

The one year we did our taxes and upon itemizing found we’d spent over $14,000.00 out of pocket – also WITH insurance. Savings?? What’s that??

Seriously, we almost lost everything. Having almost lost our house three times was very, very stressful. Without credit cards, we never would have survived. So, I hear you. Yes there has to be a better way is for sure!

Good luck with the adoption!

Hmm. I understand fear of another diagnosis (BELIEVE ME!) but getting a proper diagnosis can be useful info for making appropriate treatment decisions.

The fear of added medical expenses is obviously well-founded.

Thanks for stopping by!

Take care,


29 JeanneNo Gravatar { 10.23.09 at 12:52 pm }


I’m afraid I will need to be brief on reply for the same reason it has taken me so long to post this. An identity thief is impersonating me on twitter. So, don’t feel badly about not being able to “get into it” with twitter because the irony is I haven’t been able to post comments in a timely fashion because of what I have been dealing with on that situation. I’m sure you can use your imagination on what’s it’s like to have someone use you name, face, and blog link to pretend to be you online.

Yes, something as seemingly simple as taking a shower can turn into a Herculean task for some chronically ill patients.

I am very sorry about your healthcare situation and can only imagine how upsetting, frustrating, and maddening it is. I’m so sorry. πŸ™

I’m sorry you miss blogging but it sounds like you’re doing what you need to do for health reasons and that’s a good thing. Self-care is important.

As far as someone stealing my work, that was a separate issue to this twitter impostor incident that I’m dealing with now. Yes, it is indeed outrageous and we shouldn’t have to deal with such nonsense. Sadly, this seems to be a built-in risk. I think some people think it will never happen to them. I have learned differently. It can happen much more easily than most people seem to think. I did succeed in getting my work removed from that site. Let’s just say that I have a feeling you know exactly the company I was referring to in that incident. We’ll leave it at that.

It’s ridiculous that so much stress can come out of an activity that can help so many… a shame that something so positive can be twisted into such negative things. Unfortunately, it seems that these things really are risks one assumes when deciding to write a blog or use other sites (like social media) in the process. It’s terribly unfortunate.

I’m sending positive thoughts and energy your way and hoping that you start to feel better soon! I am sorry you are suffering so much and hope that it lets up for you soon!


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