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Saturday, September 22, 2018

Strep, ZPak, Pharmacies, Manufacturers And Allergies

To follow my story: (See Someone Asked Me Today How I Deal With...)

Thursday afternoon around lunch time, my throat suddenly started to hurt.  It was instant.  As in, one minute I was fine, the next minute, my throat was killing me.

I called the doctor's office and they were triple booked.  They gave me an appointment for Friday at 10 a.m.  They didn't have to tell me I had an infection, I already knew.  I hadn't had it in years, but, having had it before, I knew the symptoms.

Diagnosis was the easy part.  Prescribing was easy too.  The doctor sent it right over to the pharmacy electronically.  Sounds good so far, right.

Pretty much what I feel like.
The "fun" started about a half hour after I left the doctor's office.  Now... remember, I feel like pure crap.  Aches, pains, very sore throat, and no sleep the night before due to the ongoing stomach issue now combined with this mess.

I didn't eat before the appointment.  I forced myself to drink my formula.  (See OMG, My Nutrition!!!!)

When I got home, I was starving, tired, cranky and my throat was on fire, or so it felt.  Eating was painful, but I forced down some of my soup.

I wanted to rest, but rest was not what I was going to be able to do.

The CALL..... (eerie music plays in the background in my mind as I see the caller ID.)  Every muscle tenses, every nerve is on edge already and I didn't even say hello.

I have allergies, severe allergies and asthma and a host of other ailments, lymphedema, Hashimotos, an undiagnosed stomach issue and an undiagnosed illness I refer to as IT.  (See But It's JUST... - Part 1 of Series)

I have issues with gluten, nuts, eggs, soy and corn. 

Back to the call.

The girl who works at the pharmacy said that they have the antibiotic known as Zpak, however, the two manufacturers of the medication they have on the shelf may have ingredients in them that I'm allergic to.

The time is 11:30 a.m.  Keep that in mind.

The clerk gives me the name and phone number of the manufacturers and the NDC number (National Drug Code) of the medication.

  • I call the first manufacturer.  I get through quickly, amazingly enough.  The CSR informs me that the product contains soy.  No good.
  • I call the second manufacturer.  I wait a bit on hold.  Their CSR tells me that their product contains corn.  No good.
  • I call another pharmacy I use and they tell me they have two different manufacturers of the medication in stock, different from the first pharmacy.  
  • I call the third manufacturer.  I wait on hold about 5 minutes.  The CSR puts me back on hold another 15 minutes.  When they come back, their product has corn and soy.  We are getting worse, not better.

By now, I'm getting extremely upset.  I'm sick and can't get medication.  Am I going to wind up in the hospital on IV when they call in the Infectious Disease Doctor?  (See The Man Flu and How It Could Affect Me!)

My doctor's office closes at 12 p.m. on Fridays and doesn't reopen until Monday.  So, if I can't get medication, I know I'll be sent to the hospital.  I DON'T WANT TO GO TO THE HOSPITAL AGAIN.  (See Hashimotos and a Nima Sensor)  My last visit was so not fun. 
  • I decided to call the Allergist/Immunologist.  I told her the problem.  She suggested I ask the pharmacy if they have a liquid and ask about those ingredients.  
  • She tells me she will prescribe it for me, if they have one I can take. 
  • I call back the second pharmacy.  They have a liquid in stock.  I take down the manufacturer, their phone number and the NDC number. 
  • I call that manufacturer.  Again no good. 

By this time it is 1:15 p.m.  I've been at this almost two hours.  My anxiety medication isn't helping.  I can take two pills if needed they say, but then I sleep.  Sleep would be wonderful, but, I can't make calls in my sleep. 

I give up for a while.  I go into the living room in tears to tell my husband what's going on.  He tries to calm me.  Then I go into my parents' side of the house and tell my mom.  She too tries to calm me. 

  • I call back the pharmacy.  They give me the name of yet another manufacturer and tell me they have those pills on hand too, they didn't realize earlier.  
  • Of course, this is the pharmacy that's far away, but, that's par for the course.  I only use the second pharmacy when I must.  
  • Even the first pharmacy I tried is a bit of a distance.  I pass about ten pharmacies on my way to them, but they are my best chance as they are privately owned and can order from different manufacturers if need be.  
  • I call yet another manufacturer.  Finally, they read through my list, check it all out and come back and tell me that there are none of the ingredients I'm allergic to in their product.  
  • I call back the second pharmacy with this information.  They ask for the number of the first pharmacy.  They will call them and have the prescription transferred to them. 
  • I call back the Allergist/Immunologist office and advise them I found a pill and won't be needing a new prescription and ask them to thank the doctor for calling me immediately. 
  • I have been advised by the doctors and the pharmacist to take Benadryl prior to taking the medication, just in case.  I've already taken my anxiety medication and it scares me to mix them.  They both cause drowsiness.

I wait two hours and then drive twenty minutes to the second pharmacy for the medication.  The whole trip is over an hour, twenty minutes there, twenty minutes back plus time in the pharmacy waiting on line, paying and discussing the medication with the pharmacist. 

Now I'm terrified to take the medication. What if the manufacturer made a mistake, gave me wrong information.  What if another ingredient causes a problem?

My husband reminds me I have Benadryl, which I did take,I have all my daily allergy medication, which I'd already taken, I have my Cromolyn Sodium, which I took a half hour before I need to take the medication, I have Prednisone if needed and an EpiPen.  He will call an ambulance, if necessary, and they will come very quickly, they can be here in less than five minutes.  

The instructions on the antibiotic say to take with food, not to have dairy within an hour of taking it before or after and drink plenty of water.  I force myself to eat something and I ask my husband to keep an eye on me.  I pop one pill.  THANKFULLY, no reaction.  You are supposed to take two pills for the first dose, then one daily until finished.  I took one and waited a while, then took the second.

Most people go to the doctor, they are prescribed a medication and they pick it up.  I must go through HELL to take much needed medication. I actually dread the doctor saying I need medicine.  I pray he will say it's just viral, even though I know it's not.

I'm thankful I found one.  I put the name and number of the manufacturer in my phone and the name and dosage and NDC number of the medication as well.  I have it for future use.  

I went to bed very early, around 8:30 p.m.  The dogs were confused but settled in with me.  I read my book and tried to take my mind off the whole anxiety-filled day.  Anxiety plus illness is so NOT a good combination.  

As my mom used to say when we were kids, "No one ever said life would be easy."  She wasn't kidding.  I know it could be worse, but, it could be easier too.  I wish it were easier, more normal.  

I feel like I'm nothing but a huge pain in the butt and that employees and professionals groan and roll their eyes when they see me coming or hear my voice and name over the phone.  But, they were helpful, even though they were busy.   

click here for more info.
I have deleted some links to my posts as I have joined a writing group and although it will take years, I'm attempting to write a book of short stories.  I was advised not to post any of my stories but instead to wait until I put them all in the book.  

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Sunday, September 2, 2018

Hashimotos and a Nima Sensor

How do you know if you have Hashimoto's disease?  Sometimes you don't, nor do your doctors.  I had it for years before they discovered it.  (See Why Was I Gaining Weight? Why Couldn't I Lose Weight? Part Two)

From all I'm hearing from people in my many Facebook groups, gluten issues and Hashimotos go hand in hand.  As do stomach issues.  On top of all this plus lymphedema and cellulitis, I have to deal with people's nonsense. (See How Is This Funny? Don'ts and Dos)

A Nima Sensor - detects gluten in food! Someone in one of my FB groups told me about this. It's reimbursable through your HSA too! You might want to look into it. They also have one for nuts!

I found out about Nima from chatting online with someone from one of my groups. Check out her brand new blog. I love it!!!!

Many people in the Facebook groups had suggestions for me to help figure out this stomach problem I've been having for years.
  • I was given the name of a specialist in New York City who specializes in EOE, Eosinophilic esophagitis.  I've been tested for it and it came back negative, but it can't hurt to reach out to a specialist.  (See The Stunning Results of the Endoscopy!)  IF the specialist will even see me without needing a doctor to contact them and request the visit and IF they are in network my insurance, which most NYC doctors don't join any networks.  I know this from years of experience in the insurance industry. 
  • I was asked if I was tested for Mast cell activation.  I don't think so as I'm not sure what it is.  I'm going to discuss it with several of my doctors. 
  • I was told about SIBO, Armour Basel body temperature and how all this affects the enzymes and digestion.  I will discuss with my doctors as well. (No, I'm not trying to get pregnant or avoid pregnancy at age 54 and I had a hysterectomy in 2007)  So, it's not about that!  It's about the allergies and stomach issues. 

It's a holiday weekend.  Everyone in the family was invited to a barbecue in Queens at my family's house.  I didn't go.  First off, I'm in terrible pain with my stomach.  I was up two nights in a row in pain and in the bathroom for hours, literally.  So I'm exhausted. This morning I spent hours in the bathroom and even vomited my breakfast, not all of it, thankfully.

Not to mention, I don't want to risk having an allergy/asthma attack there, ruining the barbecue, winding up in a hospital far from home where they don't have my records or know me and upsetting people and myself. 

I don't drive on highways, I have terrible anxiety behind the wheel.  Riding with other people isn't fun for me either, or for them.  (See What Is Gephyrophobia?)  So if I attempted to go, I'd have anxiety from step one, getting into the car.  Not to mention, I am at the mercy of others, I can't come and go as I please, hence, if they stay until midnight, I must stay too.  My husband cannot drive either, due to his issues.  So, we need to get a ride and that terrifies me.  Especially as we get closer to the city and there's more congestion. 

Then there's the worry about what was cooked in the house, what's being heated in the oven, what chemicals they recently cleaned with, what chemicals will they spray while I'm there, will they light sternos, etc. etc.  (See Ladies Night - At The ER??????)  Getting invites causes HUGE anxiety.  

I had to turn down my aunt's 80th birthday party coming up this October.  Of all places, it's in a pizzeria/Italian restaurant and it's about an hour west of me.

location of 80th birthday party
I spoke with the manager and he explained even though we will be in a private room, there are doors to the kitchen in the back of the room and that's where they will bring the food in from and there are doors to the pizzeria in the front of the room and they get opened too.  There's going to be a buffet right in the room.  That means sternos and steam from the food right in the room!  (See What About Restaurants, Parties, Invites And Public Places?)

Breakfast at Tiffany's was the theme
I was able to go to my niece's Sweet 16, but that's because my sister made things so I could attend.  (See Incredible, Amazing Party With My Fabulous Fun, Insane Family And Friends!) and (See More On The Sweet 16 - In Pictures And Video Clips)

I did start seeing yet another new Gastroenterologist who came highly recommended by one of my doctors.  She ordered a CAT Scan with contrast which I went for.  The results of that had her order a test where I swallow a pill that has a camera inside.  Of course, it took over a month for the insurance to approve it with me fighting with them and going back and forth between the doctor's office and the insurance.  I went for the test and it was a dud.  They thought I might have Crohn's Disease.  

hooked up for test

hooked up for test

Me, hooked up for the test.  
The pill didn't go all the way through my system.  I swallowed it at 8:30 a.m. and they hooked me up to the computer system which I had to wear all day. It's more annoying than anything else.  At 4:30, I went back to the doctor's office and they removed the computer and told me I would hear in a few days.  

I had terrible pain after the test.  I called the doctor's office and she sent me to the ER once she realized that the pill didn't go all the way through my system.  She was concerned it might either be creating a blockage or be stuck from a blockage.  I spent nine hours in the ER, five of them in the waiting room as they were so crazy, crowded, that they had no bays at all in the back. 

When I arrived, I checked in, gave my info. and got a white bracelet.  I waited over four hours to be called in to see the nurse, take my vitals, my history, etc.  They called me for the CAT Scan, sent me back to the waiting room.  Took blood, sent me back to the waiting room.  They had people coming around with rolling computers in the waiting room asking you all the questions for registration, right there with the hundred other people sitting in the very uncomfortable waiting room.  

I finally got a bed at 7:30 p.m., even though I arrived at 2:30 p.m.  However, I was not in a bay, I had no curtain around me, no TV, no buzzer.  I was plopped right in front of a nurse's station.  I could literally reach out and touch the nurses behind the desk and I certainly heard every word they said.  

Once in the bed, they asked for urine and sent me for X-rays.  Luckily the pill was not stuck causing a blockage and there was no blockage causing the pill not to go through.  The pill left my system.  However, I was having bad spasms they said, which sometimes happens.  

The pill with camera I swallowed, click for more info. 
I asked why the pill hadn't made it through my system.  They said they allow eight hours, usually that's enough. Sometimes, the pill takes longer to go through a person's system, so my pill never made it all the way through.  

Embed from Getty Images

The Physician's Assistant in the hospital gave me two medications, one via mouth, the other a shot right into the muscle of my arm.  My stomach felt a bit better, but my arm was killing me.  Of course, this was no easy task, because pharmacy had to make sure nothing I was allergic to was in the medications, so it took longer to get the meds.

I'm allergic to gluten, nuts, soy, corn, eggs, sulfa, sulfites, penicillin, many antibiotics, and they suspect that genetically modified foods, antibiotics in foods and preservatives also give me issues.  Not to mention chemicals.  The ER almost killed me one day.  That's not even safe.To read about that:  (See What About Restaurants, Parties, Invites And Public Places?)

The doctor at my recent ER visit that the gastro sent me to approved the PA to send two prescriptions into my pharmacy.  It was late at night so the pharmacy got it the next day.  Both were for pills.  The shot he gave me would be in pill form to take at home he explained.

The next day the pharmacy called.  One of the medications had two ingredients I'm allergic to in it and the other medication they couldn't get in the dosage the doctor ordered.

Embed from Getty Images

I was told by the ER doctor to follow up with my doctor.  I saw one of the doctor's in the practice the day after my ER visit.  I told him about the medications.  He ordered a different medication.  When I got home, the pharmacy called.  It must be pre-approved by the insurance. I called the doctor's office.  They will work on getting it pre-approved.  I got a call a few days later.  The medication was denied.  Unfreakenreal!  Now I'm pissed.

The call came in Friday around 2 p.m., the day before a long holiday weekend.  In my vast experience working in the insurance field for over 25 years, carriers close at 3 p.m. before holidays.  My doctor's office was closing early too.  

The doctor's office can't even put in an appeal until next Tuesday.  So, I suffer.  I can't eat normally, what I can eat must be all organic and gluten, nut, soy, egg and corn free, and I eat organic baby food and drink formula due to malnourishement. (See OMG, My Nutrition!!!!)  I have a mystery stomach issue and a mystery illness I refer to as IT.  (See Foods And Drinks That Originated In Or Are Associated With New York Part 1)

The Saga continues...

click here for more info.
I have deleted some links to my posts as I have joined a writing group and although it will take years, I'm attempting to write a book of short stories.  I was advised not to post any of my stories but instead to wait until I put them all in the book.  

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