Integrative recovery and being your own advocate

Integrative recovery and being your own advocate

A few weeks ago I had a headache. Actually it was more like a head pain. Like my brain was on fire.  There are thousands of reasons for a headache. I’m not a headachy type of person. I just thought I had some kind of virus took some advil and carried on.

Five days later a red blotch appeared in the inner canthus of my right eye. “This can’t be good.” I called my sister who is a PA and she thought I may have shingles and I needed to see a MD ASAP.

It takes an act of congress to get me to the doctors office. When I lived in Boca I had a wonderful network of MDs that were always happy to see me if need be.  I knew these folks and they knew me so it was an easy interaction. Most of them were integrative docs so not only would I get what I needed – I would get extra advice on “alternative” therapies that could be helpful.

Off I went to urgent care. The person at the front desk told me to type my name into her program. No eye contact. Very gruff. My heart was sinking. This is everything I hear about on a daily basis but can’t talk about. Front office people. They have heard it all. “Take a breath.” I told myself ” You have to be here. Just get though it. This is what it is these days.

The doctor walked in. Before  i couldn’t even get my story out she said “You have shingles.” “I’m going to write you a prescription. Take these drugs you’ll get better.” Off you go pay at the door. Not even a written handout on what shingles is or what to do about my now swollen right eye. She did give me one pearl. I asked for tramadol instead of a narcotic. I was concerned about the pain. She told me you can take an advil with a tylenol and they potentate each other and you can get good pain relief. This is true. It worked better than the Tramadol. One hundred and twenty  buck co pay. So far. Lets see what shows up in the mail.

The bright light of the day was the Pharmacy staff at CVS on Jensen Beach Blvd. My prescription was almost ready. The pharmacy staff was so nice.
When you’ve owned your own pharmacy its very hard to go to any pharmacy. You get very spoiled when all you do it show up and in two minutes you’ve got what you need. This was just as good and as a bonus my new health insurance paid for most. Thank you Obama. So far this year I have paid over 2100 dollars for health insurance.

Since i left Boca I have paid for my own health insurance which started at 600 bucks a month  and went all the way up to 1025 a month. It did not cover medications. I didn’t see any reason. I didn’t take meds. It didn’t cover mental health. When i went to the dermatologist in the end it didn’t cover anything. I paid a 60 dollar co pay then a 180 dollars for barnacle patrol and a few sprays of liquid nitrogen. ( One of those was free- a professional discount)

Now I pay 700 dollars a month. Sometimes I don’t even make 700 dollars a week. My health insurance is more than my mortgage.
I’m just sayin,  I’m not complaining. I have three hundred more dollars a month to buy things like food.

I went home and nasty looking things started started to pop out all around my right eye. My eyelid was edematous.

I had many wonderful calls and messages from friends and family most offering help if  I needed but some telling me “I never had this but i heard its the worse pain ever , you need narcotics, the pain goes on for month and months, your life will never be the same yada yada yada.”
I know everyone was well meaning. But this scared me.

I went back online to read up. One thing i noticed is that i was reading the same thing over and over and it made me realize how inaccurate the internet is -one person writes something and everyone else cuts and pastes. I did read a few things  that caused concern. One was that the nerve that is inflamed-if its inflamed in your head it could cause a  stroke. Oh great. So why no pred?

I read a study that said they looked at the antiviral with pred and without pred and the conclusion was that pred made no difference. But surely in my case where its so close to my eye and the nerve  is in my head surely its worth a try. right?

The other condition i  was  concerned about was  post shingles neuralgia that stays with you forever. OMG I just can’t walk around with this pain in my head forever. forgetaboutit.

The next day i went to see an eye doctor. varicella-zoster virus in your eye can cause huge eye issues and blindness. This is nothing to mess around with. Get to an eye doctor.
Two hours wait. My head was exploding. I forgot my advil.  Nothing IN my eye. Again no instructions on what to do about the edema around my eye. In fact this is what i was told “It’s going to get worse before it gets better. Come back in a week so i can check your eye. Good luck!”
I was very confused. Did I just see the “eyeball doctor”? Is there a separate doctor for swollen eye lids? Should I have asked first?

So at this point i’m doing pain management. Taking the advil and tylenol and its barely lasting every three hours but i have faith its going to get better but all I hear is “Its going to get worse before it gets better.

Off I  go to the health food store. I found a nice homeopathic cream  called shingles rescue to put on my face and decided to do to lemon balm soaks.  I’m not a big fan of homeopathy. I don’t understand it- i’m not saying it doesn’t work – i’m saying i cant wrap my brain around the general philosophy. But I figured someone on my face couldn’t hurt.  The best thing to do was dry these suckers up. I bought the L-lysince and vitamin C. This seemed like a consensus from everything I read. I bought papaya enzymes but could not take – they made everything mush. I found a list of foods to eat and not eat. The people in the health food store told me to stay away from “nuts.” This made me laugh so hard.

I stayed home from work. I was told and have read that Shingles is not contagious in itself. I did not catch this from anyone. But if one of the little vesicles are open if a person did not have chicken pox they can catch because now its airborne.
I couldn’t work anyway. But i also did not want to be typhoid mary. If this is on your back or stomach you can cover it up. Maybe a pirates patch would work. Or a could wrap my head in gauze and just say ” I thought it was halloween.”
In the end I made the grand choice to take care of myself and get this thing better as soon as possible.

After doing a little more research and speaking to some of my fellow nurses I decided the best thing I could do was go for acupuncture and chinese herbs if needed.
I don’t know why people think this is alternative medicine.  Chinese medicine  has been happening for thousands of years. In many places in China western and eastern medicine are practiced together.  But i was still a little nervous. What if this doesn’t work? What if i’m stuck with this pain for the rest of my life? Try to have that conversation with your doctor. I have a pain my head. The first thing that goes thru their brain is that the patient is drug seeking looking for narcotics. Then after you tell them your can’t take narcotics they say ” well it really is the only thing that is going to deal with pain.” So you can’t win. All I would get is a bunch of ” sorry – you SHOULD have done this or that -its too late now. You’ll have the pain for the rest of your life. Deal with it.
So i have to be my best advocate.

I found a wonderful doc right in my little town who had been around for years, is a third generation  practitioner.  He asked me questions about my health and asked me about my concerns. He spent a hour working on me. He made me chinese herbs. I thought he was going to mix some mythical stuff up in bottle. He actually made me packets of herbs that was to go home and make tea. A hot infusion is the best way to get this stuff inside of you (and don’t reheat in the microwave. )
He gave me a list of food to go get
kimchi 1/2 cup 2 x a day
mung beans and vermacelli
seasoned laver (seaweed which sounds gross but was strangely delicious)
shou wu chi  ( which i called chinese Geritol   and when I told Dr S he laughed because he calls it that also and said “Ancient chinese secret” which made me laugh so hard. A health care provider with a sense of humor.  My endorphins were dancing)
and mashed potato poltices. Nothing was outrageously expensive. All of this made me feel better. I still have pain in my head a little over a week later – but its not waking me up and one advil q 6 is doing the trick. I didn’t  need months of narcotics or an antidepressant or gabapentin prescribed. Its going away.  I hope it stays a way foreve

2 comments on “Integrative recovery and being your own advocate

  1. Cindi I love your writing –so open. thanks.


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