Monday, April 18, 2011

Image Insights

Physical Body Maintenance and Personal Presentation have always been important to me.
I have always felt the need to "do the best I can with the cards that I have been dealt".
Not from a place of narcissism...or conceit... or even social comparison...
For me...I have been taught since birth to take care of things...avoid being wasteful...make things last!
I strive to apply this concept to my health and appearance.
I encourage family members, friends and patients to do the same.
I believe that "walking the talk" sends a strong message of living by example.
If I were to guide someone to improve well being by investing in themselves yet I appeared to only half-heartedly care for myself (ie. yellowed teeth and ill fitting clothes)...what message am I sending???
A message that I don't truly value myself or the words I speak...because I don't "practice what I preach".
I have found that without a doubt people judge how well you will be able to assist them by how well you take care of yourself.

My routine involves:
Exercising Regularly (elliptical machine and resistance bands)
Stretching Regularly to maintain flexibility (gentle yoga poses)
Eating Mindfully according to my individual metabolic chemistry
Maintaining Stylish Healthy Hair
Participating in Therapy to work through life challenges (as needed)
Keeping my nails (fingers and toes) well groomed and looking nice
Following Up with my Health Care Providers as ordered to maximize optimal wellness
Drink Plenty of quality non-chlorinated/ non-fluoridated, natural water
Observing Current Fashion Cues...dressing modestly...(enhancing to positive aspects of my body type)
Cleansing, exfoliating, hydrating and moisturizing my skin (and using sunscreen)
Brushing and Flossing my Teeth
Whitening my teeth to remove stains
Seeking meaningful human interaction daily!
Avoiding negativity whenever possible
Continuing Education
Taking Saunas to detoxify my body naturally
Spending time every day with my 14 pound Silky Terrier

Even with all of that "front loading" to maximize wellness...I struggle with health and self-esteem challenges.
With AIP, Early Menopause (due to hysterectomy), Autoimmune Thyroid Disease my metabolic efficiency has been severely impacted. I have gained 40lbs in 4 years and gone from a 6/8 to a 14/16. It is very hard for me to accept the new me.
My face is round, my eyes have become deep set with dark under eye circles.
My skin tone and elasticity has way to fine lines and wrinkles.

In my best attempt to manage I have learned that:

Re: Clothes
High waisted, full A-line dresses that have 3/4 sleeves, a V-neck and fall just below the knee are the most flattering for my new body type (large pear).
Pointed toe shoes and accent jewelry complete my best look.
I love the "BORN" shoe line for a modern fashionable look with excellent comfort and durability.
Re: Hair
Shoulder-length or longer full hairstyles with layered, "piecie" bangs are best for my head/ face shape (large and round)
Re: Make-up
A good under eye concealer is a must! Moisturizing, hydrating lotion or cream, organic mascara, eyeliner, eye lash curler, light rouge, matte loose finishing powder and tinted lip balm finish my best look.

Seeking Updated Professional Advice I have scheduled a few hours at a local day spa requesting the following services:
-A one hour make-up lesson to discuss my personal concerns and learn new techniques
-A hair lesson with a Master Stylist to discuss my concerns and learn new techniques
-An eyebrow wax and shape

Look Your Best = Feel Your Best = Act Your Best = Impact the Well being of Others the Most!!!

Initial Visit w/ A Hepatologist

Outside of visiting a Porphyria Specialist, for formal diagnosis, and my new AIP Clinical Study participation... I have been at a disadvantage in securing a long-term medical provider to manage my health needs. The providers that I have approached know little about AIP and do not seem to have the time to invest in learning (even with printed material distributed at office visits). This has been a particularly difficult dynamic for me...knowing more about AIP than the professionals I put my life in the hands provokes fear, insecurity, and anxiety. I continue to politely offer educational information...I keep a current Personal Health Record (Formal AIP diagnosis letter...copies of all recent lab/ imaging results...relevant medical history documentation and professional AIP educational literature).
This particular new patient visit was different!
Dr. M knew quite a bit about AIP!
Dr. M educated me on the nuances of the disease and offered long-term medical collaboration.

Dr. M's AIP Liver Surveillance Plan entailed:

1. MD office evaluation Q6months
2. Blood work Q6months
3. Liver Imaging Studies Q6months (Ultra Sound Q12ms/ alternating with MRI Q12ms)
4. Eventual Liver Biopsy to determine cell status/ level of disease impact on liver
5. Scope to assess Gluten Intolerance and Poor Vitamin Metabolism/ Absorption
6. Long-term collaboration and disease management support
7. If ever necessary... due to AIP related cirrhosis or primary liver cancer... a liver transplant
8. The option to receive the monthly Panhematin treatments (recommended by Mount Sinai)at his facility, under his medical guidance.

At the close of my appointment I became moved by the new found sense of medical security Dr. M had provided me.
I am so very grateful to be blessed with Dr. M as a knowledgeable new member of my health care team!!!

Sunday, April 10, 2011

2011 Porphyria Awareness Week

Written for the April 2011 Emergency Medicine News Letter
@ my Regional Medical Center

April 16- 23, 2011 is Porphyria Awareness Week

As a member of the American Porphyria Association ( ), and as an individual with Acute Intermittent Porphyria (AIP), I have been asked to raise awareness of this rare disease. AIP is a genetically inherited disease that alters specific enzymes of the heme synthesis pathway. In times of crisis the accumulation of neurotoxic byproducts cause a cascade of potentially life threatening events including, but not limited to: pain, nausea and paralysis. AIP also has a significant relationship with the liver. AIP is treated with carbohydrate loading, IV Dextrose, IV Morphine (for pain) and most importantly IV PANHEMATIN ( ).

It has been a long journey to diagnosis and treatment, confirmed by genetic testing at Mount Sinai Hospital in NYC. To raise awareness at our medical center I will be distributing AIP information (including a free online CME opportunity) outside of the upcoming ED Staff Meeting 4/14/2011.

Thank you for your time and professional consideration.

Best Wishes~

Johns Hopkins Scholarship to Reach a Goal

The Guided Care Nurse

In Guided Care, a specially educated registered nurse plays a critical and central role in ensuring that patients receive high-quality and coordinated care. Guided Care Nurses reconnect people to the center of care, are empowered to take control of their patients’ care, provide personal support to each patient individually, and offer support to family caregivers.

To become recognized professionally as a Guided Care Nurse, a candidate with a nursing degree and a current license must complete an accredited online Guided Care Nursing course. Upon completion of the course, the nurse is eligible to take an online examination leading to the American Nurses Credentialing Center's new Certificate in Guided Care Nursing.


Email to my Supervisor

I know that the hospital and our department have financial restraints related to approving continuing education opportunities.
I have invested a lot of myself in trying to participate in the JHH “Guided Care Nursing: program.
I have submitted two separate employee request packets over the past 6 months for this program and have not heard back.
I am SOOO Happy to find out that there is now a 100% scholarship available through JHH!!!!
I have completed and submitted all but one requirement….
They require a letter of support from my Supervisor.
I have written a proposed letter…it is attached… if you are ok with it can you Please print it on facility letterhead and sign it???
I need to get it in ASAP to be considered for the next class.
Thank You So Much… I really Appreciate Your Help!!
I truly believe that this information can help improve ED Pt Care Coordination!!!

The Letter

Monday March 28, 2011
Dear Sir/ Madam,

I am aware that our Emergency Department Patient Care Coordinator (ED-CC) has applied for your “Guided Care Nursing” course scholarship. She submitted the essay copied below. The facility and I are indeed congruent with our ED-CC's goal to improve Emergency Department Care Coordination by integrating the principles of “Guided Care Nursing”.

I have been actively searching for a method to finance the Guided Care Nursing Course since I discovered it about six months ago. The day I wandered into the general information web page, describing exactly what a “Guided Care Nurse” does I knew it was the “Cinderella’s Slipper” that I had been seeking. I have been a Registered Nurse working in Case Management settings for seventeen years. “Guided Care Nursing” is a concept that I have always believed in and informally practiced as often as possible.
Currently I am employed by a large medical center, as a Patient Care Coordinator in the Emergency Department. I assist patients, medical staff and others with planning appropriate care, placement, resource intervention, and long-term medical management. We have a large population of patients that are “repeat customers”. Many of these patients have multiple chronic conditions with little to no follow-up support system. They use the Emergency Department as their sole primary resource.
A scholarship would provide the means for me to complete the “Guided Care Nursing Course” and broaden my skill base. I would be better equipped to assist these “repeat customers” with innovative chronic health management strategies. This would not only impact optimal patient wellness, but create improved financial responsibility.
Currently my hospital is fiscally burdened with uninsured and minimally insured “repeat customers” who use the Emergency Department as their sole primary resource in managing multiple chronic issues. Implementing “Guided Care Nursing” Strategies as part of Emergency Department Patient Care Coordination would seriously benefit the patients we serve and the financial impact absorbed by the hospital.


Email Notification of Award

Dear Participant
Congratulations! You have been awarded the Online Guided Care Nursing Course Scholarship to attend the session dated May 2, 2011 – June 10, 2011. We look forward to your participation in this continuing education program. Course logistics for the May 2nd session will be sent to you in the near future. If you have any questions or require additional information, please feel free to contact our office at 443-287-4745 or via email at

Follow Up

I am excited to gain insight and intervention strategies to improve our ER patients quality of care/ quality of life.
My thought is that the Care Coordination/ Case Management Skills I gain, will also add to my knowledge base as a community resource in Chronic Disease Health Care Management. As life slowly unfolds and my career path becomes illuminated... I feel drawn to assist people who are faced with the challenge of navigating life with chronic health issues.

After completing this program (& Guided Care Nursing Certification Exam) I hope to begin preparing for the ANCC National Case Management Certification Exam for RNs.
( )

Continuing Education Interests:

Medicare Guidelines
Environmental Health
Genetics/ Genomics
Autoimmune Disorders
Acute Porphyria

Friday, April 8, 2011

Participating In A Clinical Study

This day last week I went to New York City for the first time in my life.
The anxiety of anticipation and expectation was by far, greater than any anxiety related to the actual experience... although subway navigation during rush hour on a Friday morning when computers are down... well, that was a bit "nerve racking"... especially with twin 7 year old boys prone to impulsive behaviors and high energy levels!

After a 2 hour navigational adventure, I arrived at Mount Sinai ready to participate in a Clinical Study designed to examine the long-term effects of Acute Intermittent Porphyria. I respect research and value evidence-based decision making. I am excited to be a part of the study.
The initial process was pretty standard, involving paperwork...consent review and signature... then a thorough question and answer session. Looking back, my only regret was that I should have eaten better and had more time to transition... I felt more "scatter-brained" than I would prefer but I gave them access to this blog and copies of my medical record... they have a good amount of solid information to start with.
About my "colicky-cranky" AIP...
I explained that significant stress is an unavoidable component of my daily existence. After failed in-vitro attempts we were overjoyed to build our family via international adoption. Unfortunately our ,now 7 year old, twin sons have significant behavioral demands linked to early life challenges. I try to be very careful in managing my lifestyle choices to avoid triggering my AIP... and yet it remains a constant "background music" almost every day of my life. Stress and illness seem to be the triggers I primarily cope with now that I am post-menopausal (2nd to a total hysterectomy in 2008).
The suggested treatment plan is to receive monthly Panhematin infusions as crisis prevention. I agreed.
I haven't started yet...but I fear the risks and the unknown.
Even though my quality of life has been significantly altered...I am familiar with my AIP... I am used to it.
It would be so awesome to regain some vitality... but is it worth the risk of getting a clot and becoming paralysed or getting phlebitis... or, or, or...
Sometimes it is just NOT helpful to be a nurse... my mind races with the "what ifs"...
I will try the infusions... because physically I feel like my body is decomposing daily... more and more toward a place that I really don't want to be.
I will see a Liver Specialist next week (to establish long-term monitoring) and I will set up an appointment with a Thyroid Specialist to deal with my Thyroid issues.
I am so very fatigued both mentally and physically by constant health issues that make me feel terrible... BUT I will continue to try my best to be positive, to be hopeful and to seek solutions.

Life Is Hard

Living the way I feel I should, involves tremendous amounts of selfless giving.
Tonight I feel like I gave my all today and I have nothing left.
I started the day at 6am fasting for some routine blood work and a liver ultra sound... by 8:30am I had completed those tasks and was on-duty at work... drinking instant oatmeal as I juggled multiple issues.
As the day unfolded... human need exploded all over the Emergency Department.
I worked diligently to meet the biopsychosocial needs of my patients and was fairly successful by days end.
I like making a positive difference... it is the gas that keeps my engine running.
There was a time,not so long ago when I was out of work for about a year...
My health presented similar challenges then as it does today... only without the reward of making a positive difference in the lives of others on a daily basis... I became unsure why I existed...without purpose...
Physical endurance and pain continue to challenge me in my desire to maintain a half-time professional career... but I am determined to push through as long as I can.
As a nurse I have the opportunity to see human situations that give me perspective on life...
I am truly blessed in so many ways... so very many people have much, much worse conditions... I remind myself to be grateful when self pity or other unhelpful feelings consume my thoughts.