Occasionally/ As Needed
Ativan- PO Q6h/ PRN- Neuro-Sensory Calming
Naproxen- PO Q12h PRN - Pain & Discomfort
Glucose Tabs- PRN to Avoid AIP Crisis
Cranberry Capsules- PRN As Directed- To avoid UTI during episodes of neurogenic bladder dysfunction r/t AIP
Magnesium- PRN As Directed- Neuro-Sensory Calming
Phenergan- PRN Q6h- Neuro-Sensory Calming and Nausea Control
During AIP Crisis
IV Dextrose
IV Morphine
IV Phenergan Alternating with IV Zofran
IV Ativan
IV Hematin
Thursday, June 9, 2011
Chronic Disease Self Management Support
-Guided Care Nurses (GCN) at Primary Care Practices
-Case Managers (CM) provided by Medical Insurance Providers
-Care Coordinators (CC) while in the hospital
-Social Workers (LCSW/ MSW) located within facilities and within community-based settings
-Counselor/ Therapist- Health Psychologist, LCSW, APRN-CNS, APRN-CRNP, other...
-Stanford University's Chronic Disease Self Management Program (web site)
-Resource Books
-Disease Specific & General Category Organizations- APF, NORD,
-Disease Specific & General Category Support Groups- online groups, Facebook, etc.
-Case Managers (CM) provided by Medical Insurance Providers
-Care Coordinators (CC) while in the hospital
-Social Workers (LCSW/ MSW) located within facilities and within community-based settings
-Counselor/ Therapist- Health Psychologist, LCSW, APRN-CNS, APRN-CRNP, other...
-Stanford University's Chronic Disease Self Management Program (web site)
-Resource Books
-Disease Specific & General Category Organizations- APF, NORD,
-Disease Specific & General Category Support Groups- online groups, Facebook, etc.
Items That Help My AIP
Meltzers Ginger Mints- to calm nausea
Farinfared Sauna- sweat out toxins, giving the liver a break
Glucose Tabs... watch out for metabolic spikes...only use if necessary (to avoid a crisis)...try to keep steady long-acting carbohydrate state in lieu of fast acting carbohydrate spikes
Reference Books
Instant Oatmeal- great for quick carbohydrates... I prefer cinnamon and apple
Air Purifier- controls your environment, and reduces additional toxins that your body has to metabolize
Organic Food- reduces toxins from pesticides, hormones, antibiotics, etc.
Water Filtration- reduces contaminates? toxins
AIP Dx and printed APF material in car, in purse, at work, at home- keep printed information with you should you need it (it has helped me several times).
Steam Mop (no chemicals)
APF (or National Porphyria Organization in Country of Origin- Reference and support
Chronic Disease Management-Personal Support
Heel Pillow to raise heels off the bed- decreases peripheral neuropathy discomfort
Pulse Ox- to test O2
Incentive Spirometer- to test lung function, esp r/t AIP crisis
Neuro Test Kit- reflexes, hot/cold, sharp/dull
Ear Plugs- sensory calming
Eye Pillow- sensory calming
Weighted Blanket- sensory calming
Weighted Heating Pad- sensory calming
Under Eye Concealer- Cosmetic Dark Circle Cover Up
Medical Alert Bracelet or Necklace with Disease Name on front and key chain flash drive encryption information on the back
Medical Alert Bracelet or Necklace with Medication Name (if appropriate...for me Neurontin) on front and key chain flash drive encryption information on the back
Encrypted Digital Medical Record on flash drive attached to key chain or in bracelet fashion...many doctors are vaguely familiar with AIP and therefor having your comprehensive medical history at their digital fingertips helps direct your prompt treatment.
Farinfared Sauna- sweat out toxins, giving the liver a break
Glucose Tabs... watch out for metabolic spikes...only use if necessary (to avoid a crisis)...try to keep steady long-acting carbohydrate state in lieu of fast acting carbohydrate spikes
Reference Books
Instant Oatmeal- great for quick carbohydrates... I prefer cinnamon and apple
Air Purifier- controls your environment, and reduces additional toxins that your body has to metabolize
Organic Food- reduces toxins from pesticides, hormones, antibiotics, etc.
Water Filtration- reduces contaminates? toxins
AIP Dx and printed APF material in car, in purse, at work, at home- keep printed information with you should you need it (it has helped me several times).
Steam Mop (no chemicals)
APF (or National Porphyria Organization in Country of Origin- Reference and support
Chronic Disease Management-Personal Support
Heel Pillow to raise heels off the bed- decreases peripheral neuropathy discomfort
Pulse Ox- to test O2
Incentive Spirometer- to test lung function, esp r/t AIP crisis
Neuro Test Kit- reflexes, hot/cold, sharp/dull
Ear Plugs- sensory calming
Eye Pillow- sensory calming
Weighted Blanket- sensory calming
Weighted Heating Pad- sensory calming
Under Eye Concealer- Cosmetic Dark Circle Cover Up
Medical Alert Bracelet or Necklace with Disease Name on front and key chain flash drive encryption information on the back
Medical Alert Bracelet or Necklace with Medication Name (if appropriate...for me Neurontin) on front and key chain flash drive encryption information on the back
Encrypted Digital Medical Record on flash drive attached to key chain or in bracelet fashion...many doctors are vaguely familiar with AIP and therefor having your comprehensive medical history at their digital fingertips helps direct your prompt treatment.
People "Like" Me
Living with a rare chronic disease is a daily dance...till death we do part.
Sometimes I am at peace with Porphyria and "we" get along well...
I know what Porphyria "likes" and "dislikes"...
I try to maintain "peace" in our relationship by doing the things it likes and avoiding the things it doesn't.
Sometimes I get frustrated because no matter what I do Porphyria will flare-up without reason... that's just the way it is.
Navigating the nuances of Porphyria coupled with Autoimmune Thyroid Dysfunction and a Gluten Sensitivity can be absolutely crazy...
I have come to find that I always do best when I use my experiences as a knowledge base for something bigger than me...
Meaning...
if the challenges in my life can provide me with knowledge and insight that might help other people... well, then I cope better... I keep a more positive perspective on life.
I started this Blog on that very premise.
I hoped to pour my thoughts, research, personal happenings and feelings into one vessel (this Blog) then convert it to a book to be distributed to anyone who might find it helpful.
Honestly I am vulnerable... I get discouraged and even depressed at times...
I ask myself..."is this stuff really helpful for others?"...
Today I noticed the Blog Stats for the first time...
It was emotionally moving to realize that ~2,000 people visit this Blog from all over the world!!!
What a gift of encouragement!
Regenerated with encouragement, I will continue to do my best to complete the Blog to Book plan!!!
The Blog component should be finished September 2011.
I have reviewed a few Blog to Book programs and a few more self publishing options...
Email (nostalgicnursing@gmail.com)... insights welcome!
Best Wishes~
Sometimes I am at peace with Porphyria and "we" get along well...
I know what Porphyria "likes" and "dislikes"...
I try to maintain "peace" in our relationship by doing the things it likes and avoiding the things it doesn't.
Sometimes I get frustrated because no matter what I do Porphyria will flare-up without reason... that's just the way it is.
Navigating the nuances of Porphyria coupled with Autoimmune Thyroid Dysfunction and a Gluten Sensitivity can be absolutely crazy...
I have come to find that I always do best when I use my experiences as a knowledge base for something bigger than me...
Meaning...
if the challenges in my life can provide me with knowledge and insight that might help other people... well, then I cope better... I keep a more positive perspective on life.
I started this Blog on that very premise.
I hoped to pour my thoughts, research, personal happenings and feelings into one vessel (this Blog) then convert it to a book to be distributed to anyone who might find it helpful.
Honestly I am vulnerable... I get discouraged and even depressed at times...
I ask myself..."is this stuff really helpful for others?"...
Today I noticed the Blog Stats for the first time...
It was emotionally moving to realize that ~2,000 people visit this Blog from all over the world!!!
What a gift of encouragement!
Regenerated with encouragement, I will continue to do my best to complete the Blog to Book plan!!!
The Blog component should be finished September 2011.
I have reviewed a few Blog to Book programs and a few more self publishing options...
Email (nostalgicnursing@gmail.com)... insights welcome!
Best Wishes~
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 changed...giving 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!!!
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 changed...giving 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 of...well...it 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 (www.porphyriafoundation.com ), 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 (http://www.aiporphyria.com ).
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~
@ my Regional Medical Center
April 16- 23, 2011 is Porphyria Awareness Week
As a member of the American Porphyria Association (www.porphyriafoundation.com ), 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 (http://www.aiporphyria.com ).
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~
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