Friday, September 4, 2009

Crazymama's Cancer Story

I have my own tale to tell about federally subsidized health care.

Here is my cancer story and my medical treatment while on welfare. which is probably the #1 reason I've never written my story, admitting i was a recipient of medicaid doesn't leave me feeling super rad.

But I have my own story and damn it I'm gonna tell it, it's time i finally did. take it for what it's worth.

first remember i had Thyroid cancer. which may not be the most exciting type of cancer, but it was still incredibly inconvenient.

When i found the lump on my neck and started checking into it , getting my first appointments and ultrasounds we had private health insurance through my husband's work. I got right in, they referred quickly , ultrasounds scheduled in a timely manner. chop chop! it was speedy fast for the first few months.

Then due to issues at work and lack of advancement opportunities my husband quit his Job and went back to school, (you make sacrifices in life while trying to get ahead , this was a small one).We lived with my mom in the basement and we got on a state funded medicaid program (welfare) for our medical insurance for the duration of his 5 year degree program. There was a program , we utilized it. we lived off student loans and grants and welfare to survive.

my thoughts on this were, we are legal US citizen's that paid into the welfare system before and would forever after . while we had a need we were working it. plus you can't have a herd of kids and no insurance, and have medical issues and let them go. the medicaid program is out there for that reason. temporary assistance. i was not a long term lifelong milking the system kind of recipient.

That being said, during this time i still had cancer and needed follow up.

while on medicaid , i went to my PCP with horrifying wait times, waiting 2 hours was standard to see her for 5 minutes. she was what was available on medicaid. getting in when you were sick was unheard of. it was dirty , and gross, and incredibly unpleasant. but she was what was available and who I'd been assigned to. the system was overloaded, and her attitude was, she was getting paid no matter what and whether or not, she had patients lined up ! you could tell the attitude was , "why be competitive by having a nice office, nice staff, and short wait times?"

then when it was time i was referred to a surgeon who seemed nice. but wanted to piddle around on actually doing anything. come in and we'll examine your neck. come in and we'll do a needle biopsy, let's wait a few months and try suppressive therapy and see if the nodule shrinks. let's repeat that test again.

for almost 2 years this Surgeon/Dr. waited around on this nodule. He told me i was young, thyroid cancer is slow growing. It's true my biopsy wasn't definitive (but then again follicular carcinoma rarely shows up on fine needle biopsy, it's only by surgical removal that diagnosis is definitive) but in the mean time i couldn't swallow. I had difficulty swallowing the tiniest of pills, food got stuck, i felt like i was choking when i was laying down. and there was a growth on my thyroid.

by the time he removed half of my thyroid, the growth was golf ball sized underneath the gland and had been compressing my esophagus (no wonder i was choking and couldn't swallow).

At my post surgery follow-up appointment, he told me it was a borderline follicular adenoma (benign growth) he gave me hormone replacement and sent me on my way . i believed him.

"Oh it wasn't cancer!", i told people. it was benign. great.

6 months later i got a letter from the cancer registry at the hospital I'd had my surgery at wondering what follow-up I'd had. i ignored it thinking ,"why am i getting this, i thought it was benign?" Another year went by. i got 2 more letters from the hospital, and i wondered why, since that surgeon had told me, it was only borderline. i hadn't even questioned what he told me.

i started having trouble swallowing again, so i went to a different PCP this time with equally long wait times, and horrible referral staff . I was finally referred to (after demanding to be referred) to an ENDOCRINOLOGIST which i apparently should have been referred to years before.

keep in mind we are still on medicaid.

At that point , i got a copy of my chart from the first surgeon to take to my new specialists and the endo. Imagine my surprise when i found a 2nd opinion on my pathology report of the original nodule.

a 2nd opinion from a world renowned pathologist saying I HAD CANCER(the hospital sent it to because it was "borderline" ) I HAD CANCER!?!

2 plus years before it was cancer. but the surgeon didn't see fit to inform me or go in and take out the rest of my thyroid which was , according the American Thyroid Association standard protocol! it should have been removed and i should have had radiation 2 years before! i guess he assumed telling me it was borderline and suppressive therapy would do the job.

i plunged forward to a new set of Dr's . of course i questioned would i have been treated better if I'd had private insurance? would the quality of care in my case have been better?

My new endocrinologist was 30 minutes away in downtown Phoenix. but i took what i could get, i was on medicaid.

Want to know how about the wait times there? each appointment was a STANDARD 3 HOURS of waiting. an hour and a half or more out front in the jam packed waiting room, an hour and a half in the dirty little office waiting to be seen by the dr. and 20 minutes with a Dr that didn't speak English that i could understand. his accent was ultra thick from his eastern Indian country. he'd ask me questions, then ask again over and over either not understanding me, or forgetting what he'd asked me. neither of us could understand the other. questions went unanswered. he explained nothing. i cried at every appointment either over the wait time as i struggled to keep whatever kids i had with me in check, or because he was rude and uncaring.

this time around i went to an ENT at an office that my kids had gone to for tubes. i essentially demanded to pick my own surgeon. i fought the insurance. i was NOT going to another substandard surgeon that i was just randomly assigned to.

she agreed the rest of the thyroid should come out, it was overcompensating, when it should have been dormant. it was enlarged. it had nodules but nothing large enough to biopsy. it should not have been there in the first place.

and then, she almost wouldn't even touch it surgically because of the complications. most surgeons don't like to clean up after another surgeons mess. going in a 2nd time was risky, vocal chord paralyzing was a risk, not knowing if he'd damaged one before the risk of having to trach me was there this time around. damaged parathyroid glands was a risk not knowing if what the surgeon said was there or not or was stunned or damaged .

not to mention the railroad track scars. 'cuz that's what every 20 something woman wants.

she went in anyway. the surgery went great. she got everything she safely could . no trach, no parathyroid issues, the scars eventually faded.

back to the endo i go. more 3 hour waits in the dirty downtown office. the waiting room was chock full of obvious medicaid recipients.

now came the fun part of attempting to get in for my post surgical (I-131) radiation.

i was educated this time around, and had to be my own advocate.

i had to fight with the insurance to get radiation. i had to demand and threaten my way into inpatient radiation isolation which was standard protocol when i had my first surgery, and if I'd had the whole thyroid gland removed at that time wouldn't have been a fight but again my treatment was SUB-STANDARD!

Now when i finally was wanting the treatment i should have had the first time around, i had to fight the insurance. i had to fight the Dr. who didn't want to say it was medically necessary to be kept inpatient while i was radioactive .

Radioactive and at risk for exposing my 5 young children. i couldn't do at home isolation, we lived in the basement of my mom's house and shared 1 bathroom and I didn't even have a bedroom. we slept in the middle of the basement. I couldn't afford to go to a hotel for radiation isolation which is what the Dr. so kindly suggested. even if i could afford a hotel , doing so is putting unknowing people at risk for radiation exposure and against radiation safety protocol. (debates on this subject are a daily occurrence on the thyroid cancer support group)

my fight with the insurance nearly put me over the edge. i was severely hypothyroid. i ached in places i didn't know i had, my energy level was NON existent. i was depressed, i was nauseous, i had no appetite. i couldn't sleep. i couldn't function to take care of my family. honestly i was secretly suicidal. IT . WAS. THAT. BAD. it went on longer than necessary because of the fight with the insurance to cover inpatient isolation. i didn't have an alternative. i had to fight for the safety of my children.

finally it was the nuclear medicine Dr. that got me approved for isolation at the hospital. he was my savior.

I honestly think taking 2 kids in a stroller with me to the pre radiation appointment helped, because i didn't have a sitter, we discussed the need for inpatient isolation while one baby clung to me and a toddler talked incessantly in the stroller.

my tears combined with the threat of a malpractice law suit if my kids were exposed and the visual of kids that wouldn't take no for an answer on being held 24/7 , sold him on the need to deem it medically necessary.

he cared about patient care whether the insurance would penalize him or not. the first Dr. made less money if he referred for unnecessary items like radiation safety. now even private insurance doesn't want to cover inpatient radiation isolation. that's a different issue for another day, but LOW INCOME people being denied basic radiation safety protocols? ASININE.

during my ordeal there were cancer patients on my Thyroid cancer online support group from Canada. they had their own group too about dealing with cancer in a country with socialized medicine, about how to get around the system to get proper and timely treatment. At the time i wondered WHY alot of those patients that could afford to come to the US for treatment did. now i know. they couldn't cut through the bureaucracy of their system to get decent and timely treatment. if they could afford it they came here to the US.

My question ? if socialized medicine is so great? why would they need to do that? the answer is because it's not great. what about those that can't afford to go out of the country for private treatment? they go untreated. they get diagnosed too late. nothing is caught early, and minor cancers spread before they can be easily contained and treated.

it's sub-standard. wait times are horrific. if the Dr. could put you off, they will. they get paid more money to see you and not treat you in a timely manner whether they fix what ails you or not.

It sounds to me kinda like putting off my surgery for 2 years, kinda like my 3 hour wait times because i went to a medicaid approved endocrinologist. kinda like seeing a surgeon that didn't follow protocol the first time and take it all out when it was cancer, and he didn't even bother to inform me of it .

My cancer story is all about dragging out a cut and dried time tested treatment, into a long drawn out process. while I'm grateful for the treatment i received, i KNOW the process would have been faster if I'd had private insurance. i didn't have an option.

I'm greatful everyday being on medicaid was temporary for me, not a lifestyle choice.

With my current private insurance you can bet , now if my Dr. has crappy wait times i switch. and if i don't feel great about my surgeon or his abilities, i have the power to choose who i see. If i hate my endocrinologist now, or the ultrasound tech hits on me, i switch. i have that power.

sure i hate paying a out of pocket for my yearly whole body scan and hefty deductibles for my thyrogen shots (which aren't approved on medicaid. neither is cytomel )

I'm the first to admit paying for every co-pay and prescription and lab hurts our measly budget. (a family of 8 living on a mid-5 figure income, we are nearly poverty level). but the power to choose who i see, and who treats my issues in a timely manner makes up for that.

it's worth it to me to be able to shop around for a decent Dr. and not just go to an apathetic sub-standard dr. or surgeon.

I'm going to college now to be a nurse rather than a hairdresser (which i always thought would be fun), because someday if i need to or want to i can work at a place that will have to guarantee me private insurance. Because I've had cancer, private insurance companies can charge me an arm and a leg for insurance or deny me out of hand but i want the power to continue to choose who i see. i want to be able to pick my own dr. and to be my own advocate as needed. and i want health care to remain competitive. so if i have to work to get group insurance for myself and my family i will.

i prefer private insurance to anything the government is ever gonna hand out.

i don't want this health care reform bill. it will take away my power and put me right back where i was on medicaid. powerless, and waiting forever for treatment that shouldn't be such an ordeal.

~~

I've avoided this topic . i usually avoid other bloggers posts about their political agenda's and fanatical opinions. but I'm coming out against the new health care reform.

i admit I'm not as educated as i could be regarding this issue.

but i had cancer while i was on federal health care at the time and it SUCKED.

getting follow up and treatment since getting private insurance has been a night and day difference. I actually got to have a thyrogen induced scan. I had a Pet/Ct when there was question of recurrence. it was scheduled the next week, not months out.

now if i have a medical issue come up which unfortunately i have had recently, i get in within a reasonable amount of time to specialists. my tests are scheduled asap and if they are a month out, it's because MY SCHEDULE isn't free, not because the schedule at the testing place or my dr.'s schedule is overbooked.

i firmly believe there needs to be opportunities for Dr.s to be competitive , to want to provide the best in medical care. If you've ever been on welfare you can tell by the welfare system already in place , Dr.'s that accept mainly welfare recipients as patients don't care to be competitive, and they may not give the mostly timely or appropriate treatments. the wait time to get an appointment at those offices is often months out, wait times to see the Dr.s are ridiculous. quality of care is lacking. and you have no power. you go where they send you. and where you can get in.


I'm just sayin' this is my opinion and experience. I'm not looking for a debate.


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© 2009 crazymamaof6

41 comments:

Becky said...

Thanks for sharing your experience. We need to speak out against those things we disagree with, as well as speak up for those things we support. Personally, I agree with you on the healthcare debate. The waits and experiences you had are standard for what I saw happening in Great Britain.

Jen said...

I agree, I know our situtation with our care is rare. But there has to be something that can be done that can be offered to those who can't get private insurance (for whatever reason) that is better than what is in place, not that I know what that is. AND I don't think it is fair to drop someone for being "high risk", as a family that has been dropped before for being suddenly deemed that (yeah 7 years ago, and in the 5 years we were on that insurance we had the standard stuff done for Corbin and Jeff had used the insurance 2 times for PCP check ups for infections) and I don't know that it is fair some of the rates people are charged for crap insurance either. This is America, we should be able to stop the bickering and come up with something that is better, but yet gives people options and choices.

Jen said...

sorry meant to add, still have private care insurance still in place, but have something better offered in place but maybe regulate both, one regulate PCI so that people aren't charged unfairly and on the other side maybe make it also regulated better.

Belle said...

I'd type up that letter and send it to Obama, and ever other goverment person you can think of! GREAT story. And, I totally agree with you. We were on Medical in Cali. and the doc's offices were discusting, waits were unbelieveable, and the other patients were grose! Here it's been much better, but I still completely agree with you. Thanks for sharing!

Ruthie Girl said...

Wow.

Above everything, I heard get educated.

You are going to be your own advocate.

Taralyn said...

It was good to hear... I just begged - borrowed and lived on almost nothing while on short term disability due to my MS... I work for a great company and was allowed to keep my benefits but had to pay over 500 a month to keep them in place.. So for 9 months I did this to keep myself out of the Medicaid issue... I wish more people would understand that Medicaid, Medicare, Unemployment, Food Stamps are not LIFE LONG programs.. They were put in place for exactly what you used it for... Temporary use... I really enjoy your blog... Good Luck to you and your family.

Are You Serious! said...

♥ I agree with you 100% with all the issues with Eliza, we've had to just through so many hoops it was insane! I'm so glad we're done with school and now have PI. Even though like you we end up paying a ton for our Out of Pocket expenses and deductibles etc. I'm going to link to your blog (I hope it's okay) so others will hopefully GET it!!!

Are You Serious! said...

sorry I meant jump!

Serendipity said...

Hey thanks for sharing your story. It was brave and awesome of you. I was on government insurance while Kindle was unemployed these last 9 months and I didn't take my kids to the doctor because it was soo dirty nasty awful!!! I agree with you politically as well!!! Obamas plan will make our health care system crap.

Webb Family said...

Thanks for sharing your whole story.
Love you girl and it sure was fun seeing you the other night.

KayDee said...

Thank you for sharing:) I have my own medical issues and it scares me when people start talking about a universal health care. It cant be a good thing!!

Jamie said...

I'm so sorry you had to go through that Julie! That is HORRIBLE!!!!! Thanks for sharing that. I think you should send that to all the politicians and everyone you know too!I am scared to death of what will happen if they pass this bill. No one should have to go through that! Especially here where we have the best doctors and treatments in the world!!!! Why can't they just make laws that regulate the insurance companies so that they have to be fair?

tammy said...

Great post Jules! I'm going to link to you too. People that are living in fantasyland, thinking that the government owes them health insurance (and magic jellybean fields and kittens that don't scratch), needs to read this.

tammy said...

Oh and I used to work for a dentist that treated welfare patients exactly like that. He would get grumpy whenever they came in, because he knew he wasn't going to get paid much. And he made them wait and we weren't allowed to schedule more than one a day. Yeah. Tell me that's not going to happen with the government in control.

jamesbhorne said...

Well congratulation on fighting the cancer. I think you may be completely missing the point about insurance reform though. As a cancer survivor you are a high risk individual, and if you were left to obtain insurance on your own, it is likely you would not find anyone willing to cover you, or your coverage would be prohibitably high. There is no mandate that insurance companies have to cover you. That is what the reform is about. It also seems incredibly shallow to hear you and others talk about the other people in the waiting rooms, it's quite likely they were thinking the same thing about you.

Carie said...

I wanted to comment, but it's harder to comment on such a serious topic, it's almost like you don't know what to say! It's easier to comment when it's about random crap, then your not so worried about saying the wrong thing! I know i hate when people comment how brave I am, and what a great job I'm doing, it makes me want to poke their eyes out, and say what the crap man, I don't want to hear that! How scary this must have been to go through all of this, and to fight the whole system! I have had to fight the system and be my child's advocate for many years now, and I find it too be overwelmingly scary and stressful to say the least! Thanks for posting this, it was interesting to read, and I hope you never have to deal with it again! I agree with you by the way about health care reform, thanks for speaking out with your experience! Sorry for not posting sooner, I just worried anything
I would have to say would sound lame and stupid! Hope it wasn't!

Supercool Hotmama said...

Amen.

Carie said...

This was her OPINION, she did not say you had to agree with her, or that her words were fact. She lived this, and let's pray to the Lord above that she doesn't have to again, and that you don't have to have this happen to you or a family member, so I take offense that you as a commenter would take the time to bust her balls about her "missing the point" and her being "shallow" because I actually recall her saying this was her opininon, which makes ANYTHING she says valid, and right! You have some nerve coming down on her, you can't even imagine what her life was like, and what she had to go through because I have a feeling if you did, that you would have kept YOUR opinion's to YOURSELF!

Cara said...

I do hope people read this and pray that they never go through it - that they stay healthy. I am forever grateful for you and your knowledge and support. If it weren't for you I would have been lost, confused and probably would have still been putting my surgery off. Thanks you so much! You have been my lifesaving angel!

Kayci said...

I can relate with you on two specific things: I admit I'm not as educated on the topic as I'd like to be- and I'm also incredibly motivated to work in a medical profession just to be sure there are still people out there who care!
I've seen both sides of the healthcare system. We were on gov't assistance for a short time as well, but outside of the actual application appointment I never experienced dirty doctor's offices or felt as though I was being treated differently from anyone else in the waiting room.
HOWEVER- once we got back on PI, I experienced my first ever kidney infection and come time for renewal, I was booted- unless I wanted to spend $600 a month for ME alone to remain covered. Now I'm totally uninsured, pregnant with #3 and having to pay CASH for everything even though I can't afford to- I pray daily to avoid catching a cold and I'm grateful the rest of my family still has PI, but I, personally, would give anything to even QUALIFY for gov't help! It's a crazy, mixed up world we live in! :)

SabrinaT said...

I want to link this post.. Amazing..

Jenn said...

No debates from me. First of all have I missed something? What is going on with your health now? You mentioned needing Doc's for current issues. You okay?

Second. I think about my Jonas, his Milk allergies and trying to get into the Gi specialist or the allergist. Not to mention the hundreds of times I have needed to run him to Primaries for ER care.

Thank you for your story. I hope it tells people how it REALLY is from first hand views. I am shocked that you never got a call after they found it to be cancerous-- SHOCKED!!!

WishTrish said...

Wow! You have just outlined the very point I have been trying to make with some friends of mine that argue with me on this topic. May I link to you on my blog & facebook if I promise not to mention your REAL name? :)

I have had the experience of both private and state health care as well. I have my squabbles with both, but there is a NIGHT AND DAY difference between the significance of my arguments for one or the other. Private is lightyears better. Light. Years.

Thanks for putting this out here. I know it's a little like walking nude before the world. I have personal issues with that one... I've been thinking recently of some things that I wanted to share that show my vulnerability in a way that I haven't found the words to express yet. You've given me courage to try. Soon.

Much love to you, friend! Much love.

WishTrish said...

.

sherry said...

This is what I don't understand. Why people are so "hopeful" about socialized medicine. Do they not see the examples? They act like we are the first country to try this. oooh-What a great idea this will be. If you want to see how it will turn out, look at Canada. Look at England. Look at countries where you have to wait years for a primary care physician. Or where you have to get something amputated because you didn't get treatment in time. Where people who can aford it come to the U.S for treatment. Why do they think that happens? Do they think people just say, "Oh, I'm sick. I think I'll take a trip!" for the fun of it? What will happen when they can no longer get treatment in the U.S, because we are just like them? Or worse! Look at your situation. That is what happens when a fraction of the population is on welfare. What happens when we all are? It will be a whole lot worse. I am all for health care reform. I am sure we can trim the fat from some of our private insurers and improve coverage. But socialism has never worked well. Look at history, for Pete's sake. Your last part is right on the money. What happens when Dr.'s have no more incentive? When there is no more incentive to go to med school? To specialize? To come up more effective treatments? To perform well? All of these things will stop happening. The whole country will stagnate and become mediocre. By the time they realize that is not what they really wanted, it will be too late....O.K- stepping off my soapbox now....;)

sherry said...

By the way, it's totally your fault I got a crappy pedicure today. Thanks a lot!;)

Hulk Granny said...

First off, let me address that first MD that misdiagnosed/underdiagnosed you. Doctors (speaking for about 60% of them) have egos that are nothing short of rock star-ish. They keep their own hours, have the personality of a dock worker, and make snap judgments on everything from the proper way to chart to a terminal diagnosis. And questioning their decisions will only piss them off. I would say specialized MD's are the main offenders here, but your basic resident can and will act the same way on any given day.

Secondly, I think the healthcare debate is a bad one because the Prez has been unclear on exactly how this will all pan out. Its all about "reform" at the moment, but so far Obama has just been one long sound byte after another, with very little substance. To be honest, healthcare reforms have been proposed that are very workable. They are basically hybrids that would use both insurance and govt/ funded healthcare hand in hand. But that is a whole new ball of wax.

I'm just worried what all the "reform" will do to my paycheck...

Julie said...

Thank you for sharing this experience, Julie. I'm so with you and think everyone should read your story.

I grew up with Kaiser Permanente for our insurance. My dad was self-employed; this was as close to socialized medicine as you could get in the area where we lived. We were not doctor going people, but when we did, we'd see any doctor that was available. The bed-side manners were more than poor, and the treatments usually included "getting some rest." That was how it was handled. That may explain why we didn't go to the doctor very often.

After all these years, here we are Kaiser Permanente patients again. My husband pushed for it while I fought it with all I had.

Over the years, they have learned that they have to compete with other forms of insurance. It is now a completely different ballgame. They send us out questionnaires frequently asking about our most recent visit. They act on responses of those questionnaires to improve their service.

The American system of choice and accountability is ideal. It is the way things are supposed to be. I know that everyone needs healthcare, but there must be better ways than taking us to a socialized system.

Rainy Day Farm said...

Thank-you for sharing your story. I am so sorry you had to go through so much trouble and misery. I wish every politician who is going to vote for this type of care for it's citizens would read your story and be moved. I am scared that they have stopped working for us and are working against us. We need to keep shouting and educating ourselves! Best of luck to you and your family in the future!

Loralee and the gang... said...

mr. jamesbhorne- if that was all the health care reform debate was about, then it would pass easily. But it's not. There is so much CRAP in that bill that is the problem. What ever happened to "Keep it Simple, Stupid"? I totally agree with Julie on this issue.

Crazymamaof6 said...

OK! no need to bash Mr. Horne. he's an old friend. and his point was discussed off this page.

i admit, i'm shallow. some of the things i said can totally be taken as such. and he knows me. shallow is no shocker and he didn't mean offense by that observation.

if reform means that people that need insurance can't be cut after actually using it , GREAT! i'm all for it.

Hulk Granny had some valid points too.and i'm more into the wait and see approach, and let's face it i prefer ignorance is bliss. and like to live in denial over it.
so there we are.

Whoa nelly let's just hold our horses before everyone gets their panties in a wad over someone stating a true observation. i am shallow. i can admit that. lets move on.

CassiB said...

first i want to say that i am so glad you kicked cancer's trash!! second sorry i didn't comment when i first read this, i was commenting with you on FB then came and read this when you said it was posted, then got distracted and forgot to come back. what can i say i'm easily distracted. insurance sucks! as someone who has had to pay for individual coverage for 10+ years i know expensive it is even if we don't go to the doc that often. dental coverage is next to impossible. i either go broke when someone gets sick or go broke each month as i pay the monthly premium. i have had both regular ins and an HSA. david works for his dad and the company is too small to provide ins. going without is freaking me out. going on access is too but we cannot afford individual coverage anymore.

jayna said...

dear crazymama,
what a story. thank you for taking the time to tell it. (i haven't been lurking in the shadows waiting to comment, i've been out and about on this holiday weekend and this is the first chance i've had to read this post...)
i think (as you have already learned) your experience shared here may help someone else out there to understand that it pays to be educated about the medical happenings of your body. i've had many friends go through so many doctors trying to find the one with answers while their health rapidly declines. doctors are paid to be right (that's why they often have egos) and it is so frustrating when they aren't. or they miss a diagnosis. or worse, they don't seem to care.
that is a horrifying experience you had with medicaid. i'm just glad to hear that you stepped up and became your own advocate! and that you have things under control now! i love that you wouldn't take no for an answer. you rock!! that is also one of the reasons that 1. you will do so well in school and 2. that i was so excited to hear that you are going to go to nursing school. you (having lived through all this) will be so much more the care-giver and patient advocate when you graduate. and you will very likely save the lives of many who may have otherwise been overlooked. there are many people in the world who make a huge difference in the lives of others... after living through this and understanding where you've been will help you help someone else! i love it. i'm so glad that you lived through it and you are ok! and that, even when it seemed too hard to pull through, that you did. whatever would we all do without our crazymama? you are a survivor. but of more than just cancer. girl, you are going places. what a great example for your kids.
hugs.

Laura said...

I am horrified reading this and I am so glad you shared it. I have to say I have seen a major difference for monoamniotic twin patients outside the US and on socialized medicine. It's a terrible thing that none are put inpatient and watched, babies die. Do we want that here in the USA? I cannot believe how you were treated and in this case mistreated. It's a wonder your still alive. It's shameful and it speaks volumes about you. The kind of person you are, the fight you have in you. The desire you had to protect your children. You rock!

ncandland said...

Thanks for sharing your story! My people believe that if health care reform passes that they will get to keep their current insurance. Why would employers offer it if you could get it for free? Insurance Co are in it to make a profit (Capitalism and Free Enterprise, American Dream). How can they compete with the government?

Lamps Family said...

It is very sad how you get treated differently just because you are on state insurance. We have had similar experiences in the past, one of the worst was when I was 7 months pregnant with my son and I had gull stones, we had just moved to an area we weren't familiar with so we went to the first hospital we could find, we got in right away and the nurses were great and the doctor seemed nice, but all they did was give me some morphine to control the pain and told me they couldn't do anything till I had the baby. They had also said that they had called my OB to talk him but they weren't able to get a hold of him, well after I was home for a day and in a TON of pain we called my OB (who was absolutely awesome!!) and he had not heard a thing. The other hospital LIED about trying to get a hold of him, when we told him what was going on and he saw the medical records he told me to go to the hospital next to his office, he had a surgeon waiting for us to arrive.

They did all of the normal testing just as the other hospital had and all of the results were negative, but on the ultra sound you could clearly see the gull stones, they poked and proded the old fashioned way to see how serious the problem was, finally they decided that surgery was the best way to go. I was in surgery by the next morning, after it was over my DR. explained how lucky we were that we called him cause my gull bladder was very close to bursting and had it burst I would have lost my son and I would have been in CRITICAL condition!!! Not all Dr.s that accept state insurance are bad, but there are some definite scum bags that don't really care about your health only that they are getting paid.I have had good and bad experiences with Medicaid, I'm not sure were I stand on this health issue I mean there are some good sides to it, but at the same time I think the bad out ways the good.

I am sorry to hear about your bad experience with your cancer and the insurance. I do think that private insurance is A LOT better, really there is no comparison. I do appreciate you reaching out and telling people your story more people need to do this, to help educate those that believe everything they are told by th government. Thanks so much for putting your story out there.

Piper said...

Holy Hell. What a nightmare to add to your cancer nightmare.
I agree, I'd like more facts on the healthcare issue, instead of both sides butting heads. I have a cousing who lives in France, and have heard some of her health care experiences, they are always a breeze.
My mom is a breast cancer survivor, and even with insurance,she has to pay $300 dollars for her special bra that fits the prosthetic breast. What a joke. My poor mamma has one bra!
We are "between jobs" and uninsured right now. 2 kids, and me needing an anti depressant SCARES me. I know most of the country worries at night. I hate it. I hope everyone will just open their minds to the facts and quit worrying which "side" their on. LOVE you mamma!

Amy said...

AWESOME POST! I have said for a long time that if the government runs healthcare like they run the post office, we're in trouble!

I too, have been deemed "uninsurable" due to a brain tumor at the ripe old age of 19. I had private insurance and it was out a week later.

When I got married a few years later, I couldn't afford health insurance because of the tumor. So what did I do? I had my babies without insurance. And guess what? I learned that kids don't have to go to the Dr. for every sniffle and cough. I also learned that most hospitals will write off a portion of your bill. Dr's will give you a break on the price. You just have to ask.

Health care does need some kind of reform but I don't believe that what is going on today is the answer.

Thanks for sharing your story. I will be linking my friends to it. I hope you don't mind. You rock Crazymama!

Amy said...

AWESOME POST! I have said for a long time that if the government runs healthcare like they run the post office, we're in trouble!

I too, have been deemed "uninsurable" due to a brain tumor at the ripe old age of 19. I had private insurance and it was out a week later.

When I got married a few years later, I couldn't afford health insurance because of the tumor. So what did I do? I had my babies without insurance. And guess what? I learned that kids don't have to go to the Dr. for every sniffle and cough. I also learned that most hospitals will write off a portion of your bill. Dr's will give you a break on the price. You just have to ask.

Health care does need some kind of reform but I don't believe that what is going on today is the answer.

Thanks for sharing your story. I will be linking my friends to it. I hope you don't mind. You rock Crazymama!

andrea said...

Wow....reading that made me sad, mad, and very tired. You are awesome. Awesome to go through that, and come through it, and awesome to share your story. I'm glad you found out about the follow-up path report and got the treatment you needed, despite the dr.'s not being very helpful. I'm glad that things are good now, and that they keep going that way. I don't have much to say about the proposed health care reform other than I'll be very afraid and disappointed if it goes through. But thank you for sharing your experience with it....

Laura said...

By the way I forwarded this story on to my sil who also has had thyroid cancer. She appreciated reading it and knowing all you had dealt with. When you have had it bad its nice to see someone else who can relate...

So thanks for sharing it for her sake too.

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