End of March – “nothing in my noggin”

OLYMPUS DIGITAL CAMERA

Today I have to take advantage of my somewhat cognitive clearness. It is a rare thing. I have so much that I want to communicate but I don’t have energy to think let alone type. It normally hurts my brain to listen to another person, and it is struggle to respond. To concentrate today is to manage my low energy , the pressure in my brain, and my blurry eyes. I will push through. So I celebrate days like this one.

It is has been over a month since I last received IV treatment. First the head pharmacist at Sutter Roseville would not give me the proper dose (4 grams) of Rocephin that the head Infectious Disease specialist at Sutter Roseville said I needed. So I went everyday 7 days a week for 90 days to receive 2grams of Rocephin with benadryl. Aetna paid for that, after my deductible of 3,500. I progressed somewhat, in other ways I did not show enough progress, and other ways the disease was advancing. My LLMD doctor wanted to increase the dosage of Rocephin and add in Azithromycin, Flagyl.

Sutter Roseville was the only medical center that was willing to treat me initially. Sutter Roseville changed my LLLMD diagnosis from bacterial infection and encephalopathy, to Lyme Disease after treating me for 90 days for the correct diagnosis. Now Sutter Roseville follows the corrupt CDC guidelines for treating LD, they refused to treat me any further, despite Aetna is willing to cover in hospital treatment. Aetna won’t cover at home treatment. Now I have to join the legions of people with LD by paying out pocket to self administer IV treatments at home. Meanwhile I am slipping backwards.

marin headlands2 I saw my LLMD last Thursday in San Francisco. Josh went with me and we had great conversation. Stick a teenager in a car for a long road trip…

The office is quite unorganized and tiny. But all the people that work there have long hours. I have to stay on top them every time. Including the doctor. She is a genius, devoted to treatment Lyme Disease, devoted to ILADS, and she gives her time freely. She is the one doctor that did forensics on my entire medical history from my entire life. She devoted one weekend to read my history before I came in too see her for the first time. The first time I saw her she said, ” All your other doctors have let you down.” She is the little tiny mighty woman and she has the credentials. I consider her a hero and a warrior.

photo-8Remembering to follow the doctors orders is another thing. For that I am responsible. It is so hard to implement strategy when I am not able to concentrate. I try to come up with solutions for me to help myself, and for somebody to help me; but I have to spend energy and thought to communicate. It is a struggle to remember my schedule when I am so often timeless.

It is so difficult to get people up to speed on Lyme Disease. Mom flies out here to help for a few days but she has a busy life. Scott does so much for me like bringing me flowers, making me dinner, making calls,bringing me to appointments, and all around making me loved. He doesn’t have a natural bent towards understanding the scientific medical side. Besides, he shouldn’t have to be my only caretaker. I have Argelia to take of the house, to shop, to pick up meds; I don’t what I would do without her (and Mom).

Still, I am the brains behind my care. It is hard. It is like trying to navigate when scuba diving in the Monterrey Bay when the algae count is high and swimming amongst the kelp forest. Call me Dori!

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

BOLD BEAUTIFUL LIFE

A beauty and lifestyle blog

Scribbles & Crumbs

Hope. Kindness. Faith. Love

Lee's Stuff

Computer, Linux and Spiritual stuff, General Health and Lyme

Finding my Miracle

Tackling chronic illness with joy and humour, one day at a time

In the Lyme Light

Chantelle Fights Lyme

Divine Dines

People who love to eat are always the best people.

Natural History

by Scottie Westfall

Dr. Pamela Costello MD Holistic neurological medicine

10409 Montgomery Pkwy NE Suite 101 Albuquerque NM 87111 505-503-8325

Erika Fuego

To Love Yourself is your Greatest Revolution.

HarsH ReaLiTy

My goal with this blog is to offend everyone in the world at least once with my words… so no one has a reason to have a heightened sense of themselves. We are all ignorant, we are all found wanting, we are all bad people sometimes.

My Journey Fighting Lyme Disease

HOPE . FAITH . COURAGE

Lyme Inside - Living with Late Stage Lyme Disease

Living with Late Stage/ Chronic Lyme Disease, coinfections (tick-borne diseases) and my Treatment

Arklatex Lyme Disease Prevention & Support

Dedicated to raising awareness of ALL tick borne diseases, offering support, and providing referrals for information, research, and healthcare choices.

kimmiecakeskickslyme

My personal story about Lyme disease, start at my June 22nd entry , "The Beginning"

The Person Next to You

... we're not alone in the journey of life!

lymewhisperer

We're not crazy. And we're not alone.

%d bloggers like this: