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Posted on 25. February 2016

Living with CVID

By Jasmine Miller

It’s hard.

That’s what they don’t tell you when you get diagnosed. They tell you things like “It’s manageable.” Of course, that is what they’re supposed to do. They’re doctors. But nobody ever tells you that it’s hard. Not the doctors, not your family, not your friends. Nobody says it. Nobody wants to be the one to say it. And that’s sad. They want you to be strong; they want you to think that it’s not too bad. Because maybe if you believe it, they’ll believe it, too.

It’s lonely.

Nobody warns you how lonely it gets. Because, at first, everyone is supportive. Everyone. You post about the bad news, and everyone is swooping in, saying that they’ll be there for you, that you gotta look on the bright side, that they are thinking about you or praying for you. But once the novelty has worn off for them, you become someone that gets put on a shelf. Because you’re sick, you can’t go out as much. After you say no so many times, people stop inviting you. You have to cancel hangouts and meet-ups because you are too sick to go out. But when you invite people over for a night in, they don’t want to do that. You’re the one who is sick and trapped, not them. They want to be young, and be out there living life while they are still young enough to live it. So, your phone stops ringing, and people stop replying to you. And when you do get invited, you feel the need to thank the person who invited you. You feel like you gotta thank them for THINKING of you. You’re thanking them for making you feel like the space you take up in this world matters. That’s an ugly truth. But nobody wants to be the one to say it.

It’s halting.

Nobody wants you to know how this will hold you back. Being sick means that every damn day is a struggle. Being sick means you need to “push through it” all the time. And it’s common to be told “just push through it” or “just try a little harder” when others don’t see the everyday struggle. They don’t see how taxing it can be to take a shower, to brush your teeth, to get dressed. Nobody mentions how hard it is to admit that you can’t do things you loved to do. Nobody warns you that there are now foods you should avoid that you loved to eat. Nobody warns you about the inevitable day when you wake up and you can’t find a reason to get out of bed. Nobody tells you that you might not be able to keep working. Nobody tells you that you might have to drop out of college for a while. Your life literally grinds to a stop, and just when you think you’ve got momentum, you get sicker and need to stop again. It’s like driving a car while riding the brakes. All your peers, all of your friends will pass you. They will outstrip you by miles. But nobody wants to tell you that in a world where society is so fast-paced.

You have to go slower. You have to take longer. You have to put things aside and put your health first. And whenever you overdo it, your body punishes you for it. And you’re sick for days, weeks, trying to recover from something as innocent as a trip to the beach. And nobody wants to say a damn thing. Nobody wants to tell you that these things WILL happen because they don’t want to discourage you.

And you want to do your best, but you’re just so damn tired. You’re tired of being sick. You’re tired of not being able to keep up. You’re tired of cancelling plans. You’re tired of watching everyone else pass you. You’re tired of being so lonely that you just want to scream. You’re tired of having to just “push through it.” You’re tired of negative thoughts running through your mind as you wonder if life is worth living if you’re not getting to LIVE. Most of all, you’re tired of being tired.

And we, as a sick community, don’t talk about this. We don’t vocalize it. We don’t vocalize it because, if we do, people don’t want to be around us. We kill the mood; we bum everyone out. We can’t vocalize it. And because we can’t vocalize it, we are often heralded as being brave or being heroic. WE ARE NOT LIVING OUR LIVES TO BE HEROES. We are living our lives for the same reason healthy people are: We are living to LIVE.

I’ve been sick for almost four years now, diagnosed for about two. I can tell you from experience that there are days when I still feel as if I just got diagnosed. There are days when the reality of me being sick is just too much for me to handle. I still have bad days. Days when I can’t get out of bed because I don’t see a point. Days when I’m so sick of “pushing through it” that I just want to scream. I’m sick of being lonely, and I’m sick of being sick.

That’s OK.

That’s another thing nobody bothers to tell you. It’s OK to feel like this. It’s OK. Your feelings matter. Your feelings are valid. You matter. You are allowed to feel like this. You are allowed to be angry. You are allowed to be upset. Because, you’re human. You’re not a robot; you are a human being. You are going to have setbacks. You are going to fall. It’s gonna happen because you’re sick, and it is inevitable. When it happens, take a day. Take two days. Take a week, if you need to. But then, make a decision. Start back up again. Ease back into living. Start by taking a shower, and turning on the light. If you can do that, then I’m proud of you. If you can’t, and all you can do is get out of bed to get some water, then I’m proud of you. If you can’t do that, and all you can do is sit up in bed, then I am proud of you. And if you can’t do THAT, and all you can do is open your eyes and acknowledge the new day, then I am SO proud of you. There’s this stupid mentality that doing these things, taking things slow, is weak. And it’s not. Acknowledging that you are not OK and you need to start over is the strongest thing that you can do.

You are strong. You matter. You are allowed weakness because you are human. You can cry, you can laugh, you can live in your own way. You are allowed to live in your own way. Some days will be hard, some days will be lonely, some days will come to a halt.

And that’s OK

 

This article is printed with permission from Jasmine Miller.

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Comments (19) -

smallinn
6:58 AM on Friday, February 26, 2016

The article  by Jasmine Miller....Living with CVID.....is excellent.
One word sums it up: HONEST. She speaks the truth to those of us, like me, with a very serious case of CVID , who need to hear it from one of us. I am  fortunate. I found a Taoist school ,of the internal arts, and using those arts, after many years of training, have ben able to get my   health  mostly stable and have good  control over my health problems. I refused to take all but 3 of the many ( over 15 ) RXs MDs ordered me to  take.
But I live reclusive, and gave up most everything people value  most in life, job, own income, relationships, social life,  foods they enjoy , travel and most everything  else people do in a " normal life ".
Oddly enough I gained more in my efforts than this terrible CVID took from me, I am blessed.

So I hope jasmine keeps writing the honest  way she does and  keeps living her life in the honest way she does.

Well said, and well done.
Take care,
smallinn

John Boyle
7:05 AM on Friday, February 26, 2016

This is GREAT, Jasmine - thanks for sharing!

And thanks, IG Living, for posting!

Rochelle
7:07 AM on Friday, February 26, 2016

Thank you for your article! I read part of it to my husband and he said "that's depressing." I told him it always helps to know I'm not alone; I'm not the only one experiencing these things. It helps remind me to feel good about what I am able to do. I am fortunate that I have a husband who is very supportive, who does take care of me when I'm sick - though I know my illness frightens him.
Thank you again, for saying what I feel!

Lois Shepherd
8:00 AM on Friday, February 26, 2016

This article 'tells it like it is'.  My families do not live locally so on days that are not so good, it is just me, myself and I.  I feel fortunate to have caring friends and neighbors and I try to enjoy all the positive things that are present in our world.

Suzanne Colville
8:12 AM on Friday, February 26, 2016

Jasmine Miller, you have hit the nail right on its head in your essay.   I couldn't have stated CVID better.   I lived my entire life with this disorder, but wasn't diagnosed until age 61.  Being ill constantly does limit your lifestyle, chase away friends, family and even husbands.  Now at age 69, after being on IVIG with Gamunex for five years, I'm the healthiest I've ever been except for severe COPD (from lung damage from undiagnosed CVID), and very severe osteoarthritis (high pain level constantly), but no more constant bronchitis or sinus infections.   I'm very grateful for that bonus.  I do take prophylactic antibiotics daily and my infusion is every 3 weeks.   Praying for you and hoping things get easier.  The Immune Deficiency Foundation has a lot of things and people to help ease your way, keep in touch with them and their resources.  You won't feel quite as alone if you do.  Hugs.

Joanne
12:52 PM on Friday, February 26, 2016

This communicated everything I'm feeling. Thank you for saying it so well. People who aren't in the situation don't understand

Pamela Stants
1:56 PM on Friday, February 26, 2016

Wow, what a powerful article!  You hit the nail on the head, as some of the same comments can be applied to other disorders.  I don't have CVID, but another rare auto-immune disorder, so I can identify the feelings expressed, loneliness, having to cancel activities because you are ill.
You are Never alone, there're others who are in the same boat as you.  Most of all, Take care of yourself.

jacquie
3:05 PM on Friday, February 26, 2016

Jasmine, my wish is that you find 'peace' with this debilitating disease. I can't imagine dealing with it at your age. I had managed to finish grad school and get married in my thirties. In January of 1996, I spent a day in court, getting sole custody of my children (then 6 & 8), and at the doctors arranging for my mastectomy. Working in the public schools, it seemed I was constantly sick and out of sick days after that. By the time I hit 50, I began a roll of 12 bouts of pneumonia in 10 years. I felt like I was always 'in recovery'. My children had a mother who was always tired. I was 60 yrs old before I discovered an immunologist. She was getting the pneumonia under control when I was exposed to chemicals at work that put me in the hospital for 10 days and dropped my already low IG into the danger zone. I had to retire early. I look back on all the difficult undiagnosed years in frustration; especially at hearing 'your sick AGAIN'. But I am learning to let it go. As Suzanne mentioned the wear and tear has left me with ongoing lung issues, arthritis and recently diagnosed fybromyalgia. I'm so sick and tired of being sick and tired! Then there are the good days. I have been on an IVIG regiment every 28 days for over 2 years now. The first year was rough. It is getting better (especially when my veins cooperate). It isn't fun working my life around that schedule but there is a more predictable flow to my ups and downs. 'Motion is the lotion' for the fybro, so I attend arthritis water classes and swim several days a week. Some days I don't feel like going but I know that my breathing is improving and my pain is lessened so I persevere. I have discovered meditation and fortunately it helps for me. I miss hiking and traveling. My is constantly a mess. But I am ALIVE and my quality of life is improving thanks to the IVIG treatments and a willingness to go with the flow no matter what others expect of me. I never heard of CVID until the day a doctor said I had it. I can't expect those with typical immune systems to have a clue. Here is wishing you an 'attitude of gratitude' to over come your frustrations and loneliness.    

Fezzywig
2:29 PM on Saturday, February 27, 2016

Thank you Jasmine.  You have nicely covered the emotional toll that CVID,  with all of its array of physical burdens, takes on so many of us.  It is such a gift to listen to your validation of how I feel much of the time.  You make me wish I had the strength to put some real effort into finding Zebras geographically nearby and put together a support group.  I used to try, but with such unpredictable health I could never get too far.  Sometimes it amazes me that we ever get anything organized.  Yet, it just goes to show how differently we all are affected throughout this crazy CVID life.      Let me just say, Thank You again.  You have made me feel better simply by sharing so much of yourself.  You have given me that precious validation that we all need so much every so often.  That 'validation' means that I don't have to wonder so much if I really am turning into a hypochondriac, and it gives me the relief I need in knowing that I am not the only Zebra who seems to have lots of extra, inexplicable pain and suffering.  It really does help to know that I am not alone.

Kathy Armstrong
8:04 PM on Sunday, February 28, 2016

Thank you Abbie - I feel like I could have wrote this. Spot on

Kathy Armstrong
8:05 PM on Sunday, February 28, 2016

Thanks Abbie. I feel like you took the words right out of my head and heart.

Kim McCollough
12:13 PM on Saturday, March 05, 2016

I, too read part of this to my husband.  After 7 foot surgeries on my left foot, bones wouldn't heal and a broken leg/ankle on my other foot, I am treated mostly as though that is my problem, forgetting all about my cvid.  I've been treated for it every three weeks for 26 years.  Anyway, spot on with your article, you spoke for so many of us. Keep spreading the word for all of us with cvid!

Dolores Claesson
3:59 AM on Sunday, March 06, 2016

I think many of us with CVID have underlying pathogens that have taken down our immune system.  Many of those pathogens are vector borne.  In addition, to low IgA and IgG and NK cells etc.  I have many co infecting agents of LYME disease and think everyone with CVID should be tested for certain pathogens.  Once the immune system becomes compromised we are open season for many infecting agents.  Lyme patients build scant antibodies to 14 serotypes of strep pneumoniae as well.  In my family, two of us have CVID and we have Borrelia burgdorferi, Borrelia hermsii, Babesia duncani, Ehrlichia Chaffeensis, Bartonella, antibodies to Brucella, Chlamydia pneumoniae, Mycoplasma pneumoniae, Toxoplasma gondii and all sorts of viruses. One other family member is positive for Rocky Mountain Spotted Fever.  

Jan Bohinc
6:38 PM on Friday, March 25, 2016

Hi Abby,
You write extraordinarily well, which paired with your open vulnerability has allowed you to create a piece that touches everyone. I agree with another commenter that there are many others, beyond those with CVID who share our experience. I hope you will consider having this published elsewhere.

. As someone else said, I am very greatful that I had a late onset. I can't imagine what it would be like to be in your "productive years" and/or without an understanding partner. I appreciate your encouragement to accept myself, as I am and to try not to aspire to the life others have. Who knows how happy they are, anyhow??😀

Thank you for this gift.
Jan

Paula
3:07 PM on Wednesday, May 03, 2017

Jazmine,
Well said! It's strange to hear my life put into words by someone else.
The only other thing I would add, is a whole boatload of guilt, I feel it everyday, I can't be the wife husband deserves.

Jackie
6:01 AM on Monday, October 09, 2017

Your article describes my life exactly. It's so difficult when friends, family and coworkers don't understand.
Even my PCP has commented on several occasions that I "don't look sick"when I feel awful. Thank you for  validating what I've been going through all my life.

Paula
12:43 PM on Friday, November 03, 2017

Jasmine
This is great for me too, I'm unable to articulate, along with C.V.I.D. I have alexithemia and pretty sure other personality traits, Thank You so much for this essay! Paula

jeff hildebrand
7:27 AM on Tuesday, November 07, 2017

Thank you Jasmine, I have been diagnosed with CVID for nearly 15yrs. And EVERYTHING you said in your article is absolutely true!! I am 49yrs old, and I really never opened up about my illness because of when you tell people you have a immune defiency people automatically think " oh, you have aids"? And then I get offended and have to explain them the WHOLE story, esp. when children is present. I just wanted to say THANK YOU !!!!

jeff hildebrand
7:35 AM on Tuesday, November 07, 2017

I just wanted to also say that CVID has caused me to lose 3 jobs ( calling in sick, or in hospital ) now finally on disability. And it caused me several relationships. ( not believing I'm sick, or I'm just faking it, to many dr. visits, so on and so on.)

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IG Living Blog | How Does Your Doctor Rate?
IMMUNE  GLOBULIN  COMMUNITY
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IG Living Blog
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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 3. December 2010

How Does Your Doctor Rate?

By Kris McFalls

Thanks in large part to the Internet, there is a consumer rating system for just about any product or service you wish to purchase.  Consumers can quickly increase profits or torpedo a business into submission with a few simple strokes of the keyboard. The current economic climate and the ever skyrocketing costs of healthcare, have made rating doctors particularly popular. Everyone, it seems, wants to rate doctors — supposedly on the premise of improving quality of care. The simple truth is, however, that although some of the doctors deserve the feedback, be it good or bad, many rating systems are really about the all mighty dollar and have little to do with quality of care.

Insurance companies want to rate doctors based on how many tests they order; the more tests, the lower the rating. Malpractice attorneys want to rate doctors based on how many tests they don’t order; the fewer the tests, the higher the lawsuit. Hospitals rate doctors by the number of patients they can squeeze into their schedules. Government wants to rate doctors by getting them to prescribe cheaper drugs and correlate that with improved care. Many online rating systems rate doctors based on unverified, anonymous comments, and then charge a subscription fee for access to the content. Other rating systems that give awards to doctors have, in some cases, been criticized for being more of a popularity contest than a contest based on skill and patient satisfaction. And, while these are very broadly based statements that don’t tell the whole story, the simple truth is: The only people who have little or no say in how they are rated are the doctors themselves!

It’s understandable and wise for patients to check out doctors before they agree to spend hundreds of dollars for a few moments with someone who could greatly impact their quality of life. But, it’s nearly impossible to conduct an Internet search using a doctor’s name without a multitude of doctor rating sites popping up. In fact, it’s difficult to conduct any Internet search at all without first weeding through all of the sites that pay for prime search engine placement. Internet searches have largely become one massive ad campaign where the prize goes to the highest bidder. Like an auction, treasures can be found; but the Internet is a place where searchers need to beware in order to avoid buyer’s remorse. 

Many doctors vehemently oppose Internet-based rating systems. In response, some doctors now require patients to sign a waiver promising they won’t post comments about them or their treatment on websites. If patients refuse to sign the waiver, they can be refused service. Recently, 35,000 doctors in California withdrew their participation from Blue Shield’s new blue ribbon rating system. The doctors did this because they felt they lacked control of many of the factors used in the rating system. In July 2010, the American Medical Association sent a letter to several major insurers protesting those carriers efforts to steer patients towards their preferred list of doctors that insurers claim give the best care for the lowest cost.

Healthcare consumers have a right to transparency, especially when deciding how to best spend their precious resources to maximize their healthcare outcomes. Doctors have a right to not have their reputation ruined by unscrupulous agencies they have no connection with or patients who have received good care but still blame them for a bad outcome. Obviously, these new rating systems need a lot of tweaking before any of them can be considered reliable when it comes to healthcare. Regardless, if there was not a demand, there would not be a market. So, it seems at this point, rating systems are not going anywhere anytime soon. Therefore, patients need to do what they have always done: Take what others say with a grain of salt, do your homework and judge for yourself.

Scroll down now to leave comments for this post - let’s start the conversation!

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Categories: Need to Know

Comments (9) -

Penny
10:52 AM on Friday, December 03, 2010

Your blogs just keep getting better and better.  Even Childcare is going to a star rating system in Arizona.  Good/Bad deal, with much the same questions/outcomes as you listed above.  LYT's

Nancy Nicholas
12:38 PM on Friday, December 03, 2010

Dr. James Jin, Elkhart, In is a doctor who is not on an ego trip. He is open to hearing the information I bring to my appointments. He is open to suggestions, changes and the 'new' ideas of treatment.

I am his only SubQ patient and he is very agreeable to the information I bring forth from the IDF and other sites. He is open to change!!!

Suzan Rhodes
2:49 PM on Friday, December 03, 2010

Well i have to say my immunologist Dr. Michael Volz in colorado, and Dr. Martin Mcdermott my pcp also in colorado, They have a lot of knowledge, and if they don't have an answer they will tell you , and say to me we can find the answers together. I have been with both of these doctors since moving to colorado from kansas in 1996. I worry about when they leave their practice who i will find . like when they retire or what ever. But these two are blessing from god, they spend time with you and try to answer all your questions. I always fear i overwhelm them with my many health issues, but they don't let it show if it does. They show concern if something shows up on my test results. I have a few others chriopractor, who is good, and hematologist, and other specialists who are good too. Colorado does have good docs.

Alexis Lewis
9:17 PM on Friday, December 03, 2010

I have a great pulmonologist in St. Joseph,Mo who first diagnosed me. She then referred me to KCMO to Dr. Daniel Stetchulte. He is wonderful, unfortunately I have had a relapse, the first major setback in 3 yrs, and was told by another physician in the practice that my IG level was high enough that I "shouldn't" have an infection. Well, the truth of the matter is I have been ill since October, off work, feeling crappy, but some improvement weekly albeit SLOW. My initial diagnosis of CVID came after being treated for multiple episodes of sinusitis and pneumonia along with Sjogren's symptoms (esp. dry mouth), hypothyroidism, renal tubular acidosis, hypertension, tachycardia, and osteoarthritis, all of course being treated with medication...more drugs. But having a great team caring for you and having this resource does provide comfort and unnderstanding people who truly get it. All of us would choose not to be ill, but my perspective is that no matter how ill I am at times, there are others who are worse and I thank God daily for all the blessings he has bestowed on me. I would highly recommend the immunology group at KU Med Ctr. Being a healthcare provider myself, I know that a good bedside manner may skew a patient's view of how knowledgeable and "good" a provider is, but most of us who are being treated at this level have reached a truly "good" provider and I am so thankful to have a diagnosis after 15+ years of being treated for repeated infections and asthma. The curse of a baffling, underdiagnosed, relatively "new" condition.

Shauna
10:40 PM on Friday, December 03, 2010

As the mother of a doctor, this blog made me a little cold and scared.  I see how hard he works and the stress associated with his job.  I watch the effect on his wife and small children with long hours away from home.  I know how hard he tries to be the very best he can be.  I have to say that it would be difficult to see this spoiled by someone's careless comment or a negative outcome because a patient was unwilling to do their part in the healing process. I agree that doctors need to be held accountable, but I also believe that a serious dose of caution is necessary in the rating systems.

Brian Erlandson
12:37 AM on Saturday, December 04, 2010

I started out with a terrible doc.  She was clueless unless I told her myself.  She prescribed 1/2 the IVIG I should have been given, guess those pesky math skills weren't important to her.  Even the pharmacist didn't catch it.  Inexcusable in my book.  Her staff of nurses in the infusion center were poorly trained and didn't have a clue how to mix the product or what saline to use.  Really simple stuff.  

My new doc is ten times more busy, but takes the time for me.  In addition to seeing him twice per month, he actually gets on the phone and gets immunologists to consult with him as we don't have any here in Montana.  He has called the Model center and gotten referrals and has studied my immune deficiency so he is fully up to date on the latest.  He even asked for a copy of IG Living to be delivered to his home instead of the office so he could actually study the articles undisturbed.  Now that is dedication!  He is even $25.00 bucks cheaper than the other doc.  

I worry what I will do should he decide to move or retire.  He is an oncologist - hematologist by trade and has a huge number of cancer patients.  He is the only one of those for 70 miles in any direction also.  He works insane hours and should he get sick, then there is nobody to step in for him.  How the man keeps on is beyond me.  

Lynne
10:16 PM on Tuesday, December 07, 2010

If anyone would know about quality care and how
to find it, it would be Kris.
I found the Mom's network to be the best. Call 10 friends and see hwho they go to and then see what Dr. got the most votes from your friends. Never be afraid to interview a Doctor. As the article pointed out, thes individuals will be holding your life in their hands. YOU are the comsumer, be wise.

susan watkins
6:50 AM on Friday, January 07, 2011

I am now 61 years old and received my diagnosis about 2 years ago.  Through the years I probably visited with over 100 doctors and none of them suggested an immune problem might be part of my escalating troubles.  It wasn't until I wasted down to 90 pounds (I am 5'8') and was surely dying, until I went back to my internist, hesitantly, to beg one more time requesting that she run a few 'magic' tests.  My brother came across the country to visit with me for support.  By that point all of my doctors had given up and agreed it was all 'stress related' and that I needed psycho therapy... which incidentally, I had been getting for the last 2 years at 150 a visit, twice a week with no results, just more drugs.(spent easily 10 thousand out of pocket) Lithium, seroquel, major, major drugs.  I was told I was bi-polar and overly stressed.  I argued vehemently, switched doctors and they all seemed to agree.  I was almost beginning to believe the crap myself.  By the time my brother came he was horrified at my deterioration, but was too kind to say much.  I told him that my only hope was to go back to my original doctor (whom I wasn't speaking to anymore, which is totally not my personality) and beg.  He agreed to back me up.  

We sat in silence waiting for her.  I was saving all my precious energy for my audience.  Finally, she came in and was immediately on her best behavior since my brother was in the room.  They spoke cordially, and then she explained to him the usual crap.  He asked a couple of questions and she responded accordingly.  I should be exercising she told him.  Join a gym.  ARE YOU KIDDING ME?  I'M DYING.  As I sunk deeper into my chair trying to disappear, I finally heard my brother raising his voice slightly and speaking in a more authorative way, 'Well, my sister is convinced that this is not stress and there is something else going on.  Something real, something that must have a pathology.'  My doctor tried to persuade him by claiming that I had seen every kind of doctor and had all of the testing done and that nothing could be found.  At this point I was sobbing in fear that once again nothing would be done.  My brother kindly remarked, 'well you can't have performed every test because she is still dying.  Look at her.  I believe her when she tells me something is being missed.'  My doctor sat and looked like she might be thinking, and said, 'well, there is one more blood test I could run, but it's a long shot'.  I quietly murmured through my tears, 'please do it before I die'.  3 days later we had the results and the door opened into my new world.

I WAS VINDICATED.  Even if I died at that point, I didn't much care because no doctor or nurse could look down at me anymore and hopefully I could put a stop to the robbery.  The doctors and nurses at my local ER had officially labeled me as 'col' CRAZY OLD LADY.

Everyone knows the rest, that's just how I got there.  My brother saved me.  With his cool demeanor and commanding presence, he broke through in a way that I couldn't.  I have been a successful business woman and earned respect in my community, but I was in a new State and knew no one and for whatever reason could not break through.  I am beginning to think that the hallmark of this disorder should read, 'one may face years of misdiagnosis, financial hardship even worse, loss of identity, the crushing of a cheerful and positive attitude, acute loneliness and isolation, fear, hospitalizations with no diagnosis, and even death, until finally receiving the ultimate gift, your diagnosis.  After all of that, you have just begun your real fight.

Kathy Zabliski
10:53 PM on Friday, January 21, 2011

I have been an RN for over 20 years and a major health care patient for 8.  I have seen both sides of this issue.  I truly believe that there should be a non-partial universal web site where patients can log in with their information and rate hospitals, doctors, nursing care, chiropractors, dentists.....

I believe that patients commenting should sign an information sheet about the seriousness of their rating & remarks, and provide information for follow up if necessary.

I believe that the health care professionals should have the right to respond to remarks good or bad.

I think patients, as a whole, would rate health care professionals honestly.  I understand that some doctors work very hard and dedicate their lives to their work.  There, unfortunately, are getting too many of the exact opposite.  People have a right to know which type of doc they are getting.

It's taken me a few years, and trying out different doctors to find the right ones.  I DEFINITELY would NOT recommend some because they were rude & arrogant.  The ones I have now are saints.  I am treated as an intelligent human being.  They listen.  I would like to share the information that I have learned to help others in finding the right doctor.  It just might make it easier for someone else to find a doctor.

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