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Thursday, March 23, 2017

Me, My Highfalutin Car And The ENT..

Not the car I was driving - just a sample of some highfalutin car!
I got into the highfalutin car at 12:15 p.m. to drive to my ENT appointment.  It's in a large medical complex associated with Stony Brook University Medical Center.


As I  pulled into the parking lot, I realized I had left my handicapped permit home.  But, my mom's permit was in the car.  I saw a handicapped spot unexpectedly and pulled in on the left.


I got out of the car and this crazy lady started screaming at me.  She was a complete lunatic.

Really?


I had seen someone from the corner of my eye as I was looking side to side. She was in the middle of the lot walking toward me. I assumed she was going to go to what would have been my right, to enter the building.  Apparently not.


I was startled to say the least.  This lady was screaming at the top of her lungs.  She said, "Pedestrians have the right of way, but you don't care with your highfalutin car!"  She accused me of some other ridiculous things, called me by a name she saw on the car, and carried on yelling.  We exchanged a few words (I wasn't polite).

Nurse Ratched - One Flew Over The Cuckoo's Nest
It's a huge medical complex with many different specialists.  I looked around for a sign for the psych ward and was convinced Nurse Ratched was right around the corner!  This crazy person must have been coming or going from there!  I was sure of it.

For the record, I was driving my mom's car.  While it is a nice car, I wouldn't call it highfalutin!  I saw the woman walking as I was looking both ways for a spot and when I saw a handicapped spot, I jumped on it. She was never in any danger, she was not close to my car, there really was no issue.


She obviously planned to go straight and when I turned to park it disrupted her. I dared to turn in front of her, blocking her from her stride straight, supposedly, but she wasn't really near me.

She lost her mind the minute I exited the car.


If there's a nut out there, THEY FIND ME!  It never fails.  After about two minutes of the nonsense, I literally waved her off and entered the building.


My appointment went well, I guess.  I saw the nurse, PA, and doctor. The doctor is sending me to yet another GIST!!!!!  Whoooo hooooo.  Lucky me.

I am to see a Rheumatologist!  Yay, one more name to add to my long list of doctor's names in my phone!  The ENT wrote down the name of what he thinks it may be for me to discuss with the new GIST!  The new GIST is the one who needs to order the test for this suspected ailment.

The ENT also suggested I see the same specialist the allergist and PA had recommenced. (See Round and Round We Go... The Saga Continues).  It's clear that doctor is the man to see.  Suddenly his name is being thrown at me left and right, yet, not one doctor recommended him in all these years. Go figure.

Unfortunately, I told the ENT, the doctor doesn't take my insurance. I explained I do have an appointment with a doctor who works somewhat with that doctor (she covers for him when he's away). Maybe she could collaborate with him.  I don't know, we shall see.


I worked in the insurance field many years.  One change I always wished they would make would be that ALL doctors MUST accept ALL insurance plans.


So I've been told for the past eight years, by many, many GISTS, I am a medical mystery!  I'd rather have hit lotto.  Someone else could have this honor. ...


The good news is, I lost 5 more pounds!  


not my prom gown, just a sample.  My mom made me a gorgeous prom gown!
I was looking through my closet at all the clothes I saved in the hopes I'd fit in them again.  Do you think it would look funny if I showed up at a Sweet 16 in my prom gown???

Just kidding.  I no longer have my prom gown. I finally gave it up about 10 years ago.  



And so, the saga continues.  Stay tuned...


Please subscribe to this blog and my YouTube Channel - link below.  Share with family and friends and on Social Media!  Feel free to leave an on-topic comment, make a suggestion, share an idea or ask on-topic questions (all comments require approval)

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5 Signs You Need To Go To The ER For An Allergic Reaction


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Wednesday, March 22, 2017

Why Do Doctors Order Their Own Testing?

I've learned from personal experience and the experience of family, friends and clients, that, at least in downstate New York, doctors prefer to do their own testing.  This happens when one doctor refers you to another or when you choose to switch from one doctor to another within the same specialty.


I started seeing a new Allergist and new Endocrinologist.  Both ordered all their own tests.  I had a sonogram of my thyroid within the past three months at my primary's office. The Endocrinologist didn't want reports or cd's from the primary.

Why do these doctors prefer their own testing?

  • They want to use the facilities they are associated with.  
  • They may feel the equipment is more advanced.   
  • They trust the Professionals at the facility.  
  • They have a relationship and work well together..
  • It avoids lawsuits.  
  • They can't be blamed for "missing" something due to using tests from other doctors.
  • If they order their own, sometimes the same testing, sometimes the same plus more, they are considered thorough. 

I worked in the insurance field many years.  I've seen lawsuits.  Doctors can't win.  


If they order their own testing, patients accuse them of "bringing up the bill."  If they don't order their own testing, they are accused of being incompetent.  I can't count the angry calls I received on both ends of the spectrum.  


Then there's the many calls I received from clients saying, "Doreen, thank God this new doctor did more testing.  He/she found (blank).  Why didn't my other doctor find it?"  Some want to sue the previous doctor (at least try), some are just thankful the new doctor identified the problem.


The new allergist I saw recently recommended I see a Specialist.  The PA in the ER last Saturday also recommended the same Specialist (see Round and Round We Go... The Saga Continues). 



I called yesterday.  Per his outgoing message on Monday, he was not available until yesterday.  He doesn't take my insurance!  Round and round we go. 

I now have an appointment with someone who works alongside him.  They squeezed me in on 3/31/17. I'm told the first appointment will be more than two hours long!  WOW. And.... she will want to do all her own testing I'm sure.  



At this point, the facilities know me on a first name basis. I don't think there's one within a 60 mile radius I haven't been sent to. 



Today I see the ENT.  He will probably want testing.  I haven't had testing from an ENT, so this will be something new.  

Stay tuned...


Please subscribe to this blog and my YouTube Channel - link below.  Share with family and friends and on Social Media!  Feel free to leave an on-topic comment, make a suggestion, share an idea or ask on-topic questions (all comments require approval)

Other Posts You May Be Interested In:


5 Signs You Need To Go To The ER For An Allergic Reaction


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The Snowstorm That Wasn't - The Allergy Attack That Was


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In The ER Again - This One Is A Doozy!


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What Is Your Vote - Should They or Shouldn't They


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Monday, March 20, 2017

Round and Round We Go... The Saga Continues


I feel like Rocky Balboa.  Like I just went 10 rounds.  Ten rounds with the medical profession.  My saga continues...

See:

The PA at the ER on Saturday prescribed oral steroids (after I received IV steroids in the hospital). I picked them up yesterday, Sunday, as I couldn't start them until then.  I asked the pharmacist if there was any gluten, nuts, soy, corn or eggs in it.  

He read off the computer and said he didn't think so.  Then he printed out a label with the name and phone number of the manufacturer,  He highlighted the NDC number of the prescription and told me to call myself.  He was professional, polite and concerned, but not willing to commit.  


He didn't give me a definitive answer.  No one wants to take responsibility.  No one wants to leave their company open to a lawsuit.  


ROUND 1

I couldn't call the manufacturer until this morning since they were not open over the weekend.  That's when the "fun" began.  
  1. I dialed.  I waited on hold about 10 minutes before someone answered.  I was transferred twice.
  2. A Customer Service Representative finally got on the line.
  3. I gave her the NDC number, all my personal information - my full name, date of birth, address, phone number, maybe even the dogs' names, my blood type and my great grandmother's maiden name!  Well, at least it felt that way. 
  4. I gave her a list of my allergies
  5. I was placed on hold another 10 minutes.  
  6. Ten minutes on hold initially, 3 minutes being transferred, 6 minutes talking to the CSR, 10 more minutes on hold.  That's TWENTY NINE MINUTES in so far. 
  7. She came back on the line, told me to hold some more and I waited another 5 minutes.
  8. We were now in THIRTY FOUR MINUTES. 
  9. She came back on the line, asked me several more questions (not sure why she didn't ask initially) then placed me on hold for another 8 minutes.
  10. FORTY TWO MINUTES in - no answer yet.
  11. She came back on the line and informed me the product contained corn.  
  12. I asked if she had a product that did not contain any gluten, nuts, soy, corn or eggs.  
  13. She chuckled (why that was amusing I'm not sure), then told me she had no way of looking that information up.  She advised me to call the pharmacy. 

ROUND 2

Calling back the pharmacy I picked the medication up from was pointless.  They already told me they couldn't tell me what medication would be safe.  I had to talk to the manufacturer(s) who.... told me to call the pharmacy, who... told me to call the manufacturer(s), who... (well you get the idea)..  
  1. I called the compounding pharmacy the Allergist gave me the number to. 
  2. I had to give them all the same information I gave the CSR at the manufacturer, only I think they also wanted my great grandfathers Social Security Number (did they have Social Security Numbers back then?)
  3. I asked if they could make me prednisone without anything I'm allergic to in it.
  4. I was put on hold for at least 6 minutes.
  5. She told me they can make me a liquid.
  6. She took all my insurance information.
  7. She told me she needs a prescription sent in and what it must say.
I WAS AT THIS FOR ONE HOUR 25 MINUTES  by the time this call was complete! 


ROUND 3
  1. I called the ER and asked for the PA that prescribed the medication originally.
  2. I was told he was not working today and that the ER doesn't do follow-ups.  
  3. I was told to call my Primary Care Doctor. 

ROUND 4
  1. Calling the Primary's office was pointless. I knew from experience they wouldn't call in the prescription.
  2. The Primary's office would need me to come in to see a doctor there.  There was no reason. They only refer me to Specialists. I have a lot of experience with this. 

ROUND 5
  1. I called the Allergist several times.  I couldn't get through.  
  2. I will call again tomorrow.  
So... I went five rounds, but I swear it felt like 10.  I'm completely stressed out.  

As of right now, I have no steroids.  I'm still swollen.  I'm taking Benadryl, but it's not doing much.  


I did get an appointment for Wednesday with an ENT, per the allergist's recommendation.  They happened to get a cancellation, miraculously, and the ONLY appointment I could have was this Wednesday at 1:00 p.m., otherwise, I have to wait months.  

I tried the Specialist the PA and allergist recommended, but I can't reach him until tomorrow per his recording.  


As of 8:00 p.m., Monday, 3/20/17, I have gotten nowhere.  My neck, face, throat, tongue and nose are still swelling (it goes up and down),  I spent about three hours total going in circles.  

And round and round we go... The Saga Continues.

Stay tuned...

When you live a normal life, you are given a prescription, you go to your pharmacy, you pick it up and you start taking your medication.  Nothing about my life is normal.  


Please subscribe to this blog and my YouTube Channel - link below.  Share with family and friends and on Social Media!  Feel free to leave an on-topic comment, make a suggestion, share an idea or ask on-topic questions (all comments require approval)

Other Posts You May Be Interested In:


5 Signs You Need To Go To The ER For An Allergic Reaction


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The Snowstorm That Wasn't - The Allergy Attack That Was


The Family I Haven't Met Yet



Family Birthday Celebrations


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Wanted - Short, Dark-haired, chunky woman... You Won't Believe Witness Descriptions!


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Sunday, March 19, 2017

5 Signs You Need To Go To The ER For An Allergic Reaction


 Five signs you need to go to the ER for an allergy reaction:   (See Round And Round We Go... The Saga Continues)
  • Swelling - especially of the mouth, tongue, throat, neck, nose or eyes.
  • Rash or hives - whether it's isolated or covering most/all of the body..
  • Signs of  Anaphylaxis (what is anaphylaxis) - cough, difficult or irregular breathing, wheezing, dizziness, heart palpitations, fainting, nausea, vomiting, abdominal pain and diarrhea 
  • Skin flushed red or person turning pale and/or going unconscious.
  • Headache, confusion
If it's a first time issue, go immediately.  If you aren't a newbie and have prescription allergy medications, Benadryl and an EpiPen (see Lower-Cost Generic for EpiPen), you may want to monitor the situation before heading to the ER. 


It happened again.  I have more paper for my wall.  I can start on a second room! (see In The ER Again - This One Is A Doozy)


Wednesday, 3/15/17, I made the soup (recipe) I always make in anticipation of a snow storm (see The Snowstorm That Wasn't - The Allergy Attack That Was). I used all the same ingredients (all organic and gluten, nut, soy, egg and corn free).  

I set aside part of a carrot and potato for lunch. When I ate lunch, it didn't go well.  I never ate the soup, it was put in the freezer and fridge.


Thursday, 3/16/17, I made spaghetti and meatballs for dinner and all was fine.

Friday, 3/17/17, I ate the leftover spaghetti and meatballs.. I also took a small taste of the chicken from the soup I made.  I wasn't sure if it was the chicken (assuming it was as it was cooked with the potatoes and carrots) or the spaghetti and meatballs but all was not fine.


Friday was St. Patrick's Day.  I refused an invite to my sister's house as hubby doesn't like corned beef and cabbage and I can't eat anything not cooked by me (see What About Restaurants, Parties, Invites And Public Places?)

After the taste of chicken and the spaghetti and meatballs, I started to get a reaction.  What the hell was going on.  My neck, face tongue, throat and nose swelled.  I took a Benadryl.  I had already taken my allergy medications for the day.


You can adjust the recipe to suit your needs (i.e. gluten free flour, egg substitute, etc.)

I got nervous.  I called my sister and she told me they hadn't cooked anything there that would affect me (the soda bread was cooked at my other sister's house). 

So I went over.  I was more comfortable around a lot of people.  My niece is a Physician's Assistant and isn't squeamish about using an EpiPen.



I was desperately trying to avoid the ER.  Had it gotten bad enough, I would have gone.  

The next morning, Saturday, 3/18/17, I woke up with my neck still swollen and very painful. I couldn't turn my head. 



You guessed it.  My dad took me to the ER.  I preferred him, he stays calm, hubby gets upset.  

I saw a young PA, he looked 12!  He ordered IV steroids which helped but didn't stop the swelling completely.  They prescribed steroids to my pharmacy, but I don't know if I can take them, I pick up the prescription today and will speak with the pharmacist.


I need to find a specialty pharmacy and am still working on it (see What Is A Compounding Pharmacy And Do You Need One?).  

The PA is not sure it was an allergic reaction.He gave me a diagnosis stating what he thought it was, which I won't say right now, until/if it's confirmed.  He gave me the name of a specialist who is a top doctor.


The PA warned me not to Google.  He said, "you will think you are dying."  Those where his exact words. I don't Google unless I have a diagnosis and have been taught about the illness.  I prefer doctors who have dedicated their lives to medicine over Google.


After a diagnosis, I will join groups online and Google (with the ability to understand what is accurate and what isn't).  Having a diagnosis can allow me to ask my doctor if I find information that interests me.  Prior to diagnosis, doctors generally won't respond to Google questions.  They consider it a wild goose chase.

The ER doctor also saw me and agreed with the PA.  They both agree that while I've had allergic reactions in the past, there is also an underlying issue (I've had this problem before).  Per my previous allergists and current allergists, I am allergic to a long list of foods, chemicals, etc.


I have Lymphedema (not from breast cancer).  I have Hashimoto's (an autoimmune disease).  When you have autoimmune issues you tens to develop other autoimmune issues. That's what the PA thinks I have.

When I saw my allergist on Thursday, he gave me the name of the same doctor the PA gave me.  He didn't say why, just that he wanted me to see him.  I called  Friday, but couldn't get through.  I will try again on Monday.


A friend from my old job called last night.. I told her about the recommended doctor. She has a friend who works at the same facility as the doctor.  She highly recommends him. She too said he's one of the top doctors in his specialty (see NY Top Docs).

My friend had a family member that had a problem no doctors could figure out.  A young doctor right out of school  diagnosed it.  Sometimes right out of school is a good thing. This PA, who looked 12, was not long out of school with a sharp mind and the most recent training.  He was not set in his ways.


Maybe he's my knight in shining armor in my quest for medical help!

Why did none of the other million doctors I've seen (if it's a GIST, I've seen them - see Dealing With The Issues Associated With Hashomoto's Diseasethink of this possible diagnosis or recommend this doctor?

I don't know.  Sometimes you need to search a long time to get the right people in your life.  Kind of like the old saying, "you have to kiss a lot of frogs before you find your prince."

Please think good thoughts that this PA is correct, the specialist he recommended takes my insurance and that he can actually help me!!!

Stay tuned....

UPDATE:  (See Why Do Doctors Order Their Own Testing?)

If your or someone you know has had a mystery medical issue and it's finally been resolved, please leave a comment.  If you or someone you know have a similar issue to mine and you just want to chat or have some information, please leave a comment. 


Please subscribe to this blog and my YouTube Channel - link below.  Share with family and friends and on Social Media!  Feel free to leave an on-topic comment, make a suggestion, share an idea or ask on-topic questions (all comments require approval)

Other Posts You May Be Interested In:

What Is A Compounding Pharmacy And Do You Need One?


The Snowstorm That Wasn't - The Allergy Attack That Was


The Family I Haven't Met Yet



Family Birthday Celebrations


Pros And Cons


Wanted - Short, Dark-haired, chunky woman... You Won't Believe Witness Descriptions!


Gluten Fee Vegetable Crockpot Lasagna - All Organic


Valentine's Day With Allergies???????


Where Do I Shop For Organic, Gluten Free, And More...


Snowstorm Anxiety When You Have Allergies, Asthma, Hashimotos, Cellulitis Issues


What About Restaurants, Parties, Invites And Public Places?



That Doesn't LOOK Gluten Free

Back To Basics - Organic Baby Food? The Holistic Approach


Organic, Gluten Free Crockpot Lasagna in about Three Hours