Re-Engaging
It has been a year or two since my last entry...
I have been in such a rut....for such a long time.
I have been telling myself that writing on my Blogs just doesn't matter... finishing my book doesn't make a difference... but after a recent reality chat with my brother I have come to understand that setting goals and making a commitment to work toward set goals...well that mind set makes all the difference.
So often I feel that I am left with such little control, waxing and waning ability/disability due to the nature of my Porphyria... but as he reminded me even the smallest incremental steps taken forward toward a goal can provide a sense of purpose, of wellbeing, of accomplishment. I am re-engaging and committing to see this project through to the finish. I spent today not feeling up to par...and yet as I rested on the sofa...I have gathered and re-organized all of my book data. I have come to realize creating your first book has so many challenges and opportunities to learn about the various components in the process!
Thursday, April 3, 2014
Thursday, March 15, 2012
My Biggest AIP Trigger is STRESS
While life is stressful for almost everyone, I believe that God has seen fit to put several "extra portions" of stress on my plate. My career is gone now... I am primarily home bound to filter my triggering environmental and situational triggers (perfume, high sensory stimulation ect.)... I sauna... I meditate... I go to a therapist... I talk out my issues... I eat right... I rest... so here it is...
My twin sons are now almost 9 years old... we have experienced consistent behavioral issues for many years... they are increasing... it is constant... the resources haven't been there... the recent diagnosis is multiple Autism Spectrum and Psychiatric Disorders.
I am now in the process of applying for developmental disability services via the health department. I manage the best I can... but real life feels like it is eating me alive.
Prayer and hope keep me afloat most days.
My twin sons are now almost 9 years old... we have experienced consistent behavioral issues for many years... they are increasing... it is constant... the resources haven't been there... the recent diagnosis is multiple Autism Spectrum and Psychiatric Disorders.
I am now in the process of applying for developmental disability services via the health department. I manage the best I can... but real life feels like it is eating me alive.
Prayer and hope keep me afloat most days.
Going "off road" with My AIP Treatment Regime
It has been nearly 3 long months since I have attempted to put thought/ words to paper... Life has certainly been a challenge.
Trying to obtain Social Security Disability (SSD) is a terrific "uphill battle". After supplying SSD with a lengthy list of all the health care providers I see... and a detailed description of the evolution related to my AIP fueled daily issues... I was simply denied without a "blink".
Round two of this process involves appealing the initial SSD denial. I have contracted with a local lawyer who specializes in assisting individuals appeal SSD denials. Being reduced to a one income family we are feeling a significant financial pressure and struggle to keep our "head above water"... this lawyer, like most, agrees to take a percentage of the back SSD monies, as payment for services rendered, if and when the case is won. During our initial visit he asked many questions... it was both exhausting and frustrating... trying to explain Acute Intermittent Porphyria and how it has eroded my nervous system in so many ways... creating daily discomfort and dysfunction that renders me home-bound 90% of the time, to best control my environmental triggers and rest regularly... my situation is not visually concrete. I can walk fine sometimes... I can think and talk fine sometimes... it comes and goes... no cycle... no rhythm...no concrete duration... my endurance is very poor always... great fatigue hovers on me constantly... my muscular strength varies. The lawyer was straight forward, "cases like yours... rare diseases that are not straight forward can be extremely hard to prove". Thankfully he took my case anyhow!
To follow-up I must gather copies of all of my medical records from any health care provider that I have seen. I must also try to get AIP Specialist Statements that clearly support my claimed disability.
What an educational and humbling journey my life has led me on.
The title of this segment is "Going 'off road' with my AIP Treatment Regime let me explain my choice of words... Adhering to "standard of care" medical treatment can be compared to "properly driving on the standard paved road"... that "road" was only taking me so far on my health management journey. Weekly IV Dextrose infusions calmed AIP symptoms for a day or two after each infusion then the benefit was gone. What I also came to know was that these same Dextrose infusions coupled with the glucose tabs I was popping at home contribute to Non-Alcoholic-Fatty-Liver-Disease, Metabolic Syndrome, Obesity and more. The Panhematin infusions also calm my AIP for a day or two, then like the Dextrose the benefit is gone. I have learned that not only do I risk blood clots but continued use of the Panhematin can be a concern related to the added stress it puts on an already compromised liver to break it down. Of coarse I weighed the benefit to the risks and for my situation I decided to continue "searching for the needle in the haystack"... there must be a most natural way to manage my chronic AIP state!
As a nurse I was very hesitant to begin trying anything that I hadn't heard of in a textbook. Nervous or not I needed help! I started researching and reading about cultural practices concerning food as medicine as well as any other "time-tested" treatment remedies used around the world. This is when I decided to do it! I went right "off the road" related to following traditional medicine exclusively. My options opened up when my mind widened the "acceptable" parameters.
Remaining tethered to my original medical practitioners for continued monitoring and acute intervention when necessary, I began a new intervention exploration that allowed me to regain a bit of power, even some control over my disease management!
I started each of the following interventions very slowly in minimal doses to test my individual reaction. If my body tolerated a new low dose intervention, I would gradually adjust the parameters of the intervention until I felt maximum benefit while being ever conscious to maintaining internal "balance".
Psychotherapy and Mind:Body Yoga
My psychotherapist is an advanced practice nurse and a certified yoga instructor. She has proven to be an excellent resource for me in realizing the effects that the mind has on the body as well as the body on the mind. She has a great wealth of knowledge related to both traditional and non-traditional wellness interventions. Psychotherapy nurtures my mind and spirit.
Acupuncture and Nutritional Coaching
I always thought Acupuncture sounded interesting but couldn't "wrap my mind around" the thought of multiple needles being stuck into "weird" places all over one's body. Well as they say, "desperate times call for desperate measures"... my health insurance actually pays for Acupuncture as a chronic pain management therapy! I called... I went... and I have been going weekly ever since! I have found I am able to have significant mental health quieting and pain quieting that lasts for about two days after each treatment! Each visit begins with a personal evaluation and nutritional discussion custom to my individual situation. I feel well cared for and nurtured.
Juicing Organic Fruits & Vegetables
I found that I feel best when I juice carrots and apples at least 12oz daily. I have a juicer that I got at a local department store (~$100.) and it works fine. Carrots help my liver and provide a natural carbohydrate infusion that calms my AIP without any negative effects (except cleaning the juicer after each use).
Wheat grass
I discovered that chlorophyll can be very helpful to someone with a blood disorder like AIP. Chlorophyll has the exact same chemical make-up as heme... except iron is the center component of heme and magnesium is the center of chlorophyll's porphyrin ring!! So I learned to grow my own wheat grass at home and juice one shot-glass full to drink daily. I may work up to twice daily but one is enough at present.
Raw Organic Foods
Raw foods as close the earth as possible are full of unprocessed vitamins, minerals and life. They are alive. I feel completely different (in a good way) when I eat more raw food than cooked. Much lighter in spirit... much "healthier".
Sprouts
I began growing sprouts because it is very easy and fit nicely with my raw food and chlorophyll needs.
Other Food as Medicine
Things that I have come to find help me:
- keep a 95% gluten-free diet
- avoid all bovine dairy products
- keep a soy-free diet
- buy organic fruits and vegetables whenever possible
- buy local and in-season whenever possible (even better when I pick it myself!)
- eat more raw food than cooked
- eat a mostly vegan diet
- monitor protein and listen to my liver
- monitor large quantities of dense carbohydrates at one meal
- be mindful of acid: alkaline balance when eating, eat more alkaline than acid
- be mindful of my personal food sensitivities
- avoid all processed packaged foods as much as possible
I use old fashioned rolled oats, mixed rice types, dried beans, potatoes, turnips, parsnips, rutabagas,carrots and gluten-free flour products as my main starches.
Free-range family hen egg whites, goat cheese, goat kefir, nuts, and dried beans are my primary protein sources.
I love using herbs and spices to enhance my health as well! I especially like ginger, cilantro, onion, garlic,
**For a special treat I freeze whole peeled bananas then put the frozen bananas in a food processor with vanilla almond milk and carob powder... delicious guilt-free "ice cream"!!!
Coffee Enemas
Really??? Yup!!! I actually did it. I know this one is seriously "off road". Believe it or not the coffee enema is one of the most helpful interventions that I use now! This is what I do:
- measure one full quart of distilled water and pour in pot to heat
- measure one to two tablespoons of organic enema coffee beans and grind in coffee grinder
- put ground coffee in pot with distilled water and heat until boiling
- boil for a few minutes then turn off and let cool
- use a kitchen thermometer to check temperature
- when coffee is about 100 to 105 degrees pour through strainer to remove all grounds
- pour coffee into enema bucket
- set coffee bucket up so that it will be higher than body (for me about 14 inches higher than my body)
- place towel under body and lay on right side
- prime enema tubing (allow coffee to fill tubing and clamp off)
- lubricate tip of tubing and rectal opening
- gently insert tube until resistance is felt
- unclasp and allow some coffee to flow into body (one minute)
- re clamp and move tube side to side while gently pushing tube past internal sphincter
- tubing should be inserted about 6 inches or so
- unclasp and allow coffee to slowly infuse into the body
- when all coffee has been successfully infused clamp tube and slowly remove from body
- try to hold coffee in the body for 15 minutes then expel in toilet
- massage abdomen after first round of expelled materials
- I generally produce 2 or 3 rounds of expelled materials
When I first tried the coffee enema I made it very weak, used less water and did it a few times a week... then I progressed to full strength daily enemas first thing every morning. For me this was a great detox but too much on my body to keep up daily. I currently use a coffee enema once or twice weekly and whenever I feel like my liver needs to dump out a toxic load of built up porphyrins and precursors. From what I understand rectal coffee is absorbed by the rectal vascular system and stimulates peristalsis, stimulates the gall bladder to "dump" and stimulates the liver to "dump". Supposedly the liver also increases helpful glutathione production exponentially. I can't verify the logistics, but for me... I feel significantly better after a coffee enema... a bit more energy (lasting 2 to 3 hours), less liver discomfort, less pain, and improved mental clarity.
Raw Goat Milk Kefir
For me, I believe that my life-long constipation has resulted in a bacterial imbalance in my gut where the bad guys are much stronger than the good guys. I have significant vitamin deficiencies (probably from poor absorption) and consistent abdominal bloating with lots of gas and abdominal fluid. I recently learned that the gut/ bowel can become hyper-permeable over time due to poor digestion, and bacterial imbalances. When this happens things pass through the gut/bowel wall into the blood vessels and abdominal space that should not be there. This causes trouble of all sorts. Well, the coffee enemas helped get rid of a lot of the bad guys but, it got rid of my good guys too. So I have begun to replace my good bacteria naturally using raw goat milk kefir. I am starting slowly... just one shot a day first think in the morning 30 to 60 minutes before eating (after the coffee enema on those days of the week). It has only been a week so far, but it is working! Commercial goat milk kefir is available, but it has been pasteurized killing all of the helpful natural enzymes. I will use the commercial stuff if raw is unavailable because the live bacteria are still present.
Why goat milk... my body is sensitive to bovine (cow) dairy. Goat dairy is simpler and easier in the human digestive system. Goat milk is widely used all over the world.
Natural Compounded Estrogen Replacement
I had been repeatedly told that the standard commercially produced vaginal estrace cream applied once weekly was my only option for hormone replacement therapy (HRT)due to surgically induced early menopause. The standard HRT vaginal estrogen cream is riddled with preservatives that my body hates (methyl parabenes, polypropylene glycol, etc.) not to mention it triggered my AIP to higher levels and migrain headaches... ugh it was an awful necessity! Then I stumbled on some wonderful information that prompted me to telephone my local "compounding pharmacy" and ask if there are any "natural"HRT options... there are!!! I now have a custom natural HRT vaginal estrogen cream compounded for me. AIP flare-ups related to HRT, vaginal atrophy and painful intercourse are a thing of the past! Natural is best for me!!!
Explaining my "off road" choices to my Hematologist
Today was the first time that I have seen my Hematologist since mid December 2011. I had been doing weekly Dextrose infusions and independently decided that I needed to try alternative therapies. I was very nervous about explaining my abrupt absence from on-going treatment. Thank you God in Heaven... he was warm and understanding. I left feeling at ease and in good collaboration. We both agree that if/ when my AIP escalates to unmanageable levels he will provide the standard interventions. I will continue to research and seek methods that work for me in relation to long term disease management at home.
Trying to obtain Social Security Disability (SSD) is a terrific "uphill battle". After supplying SSD with a lengthy list of all the health care providers I see... and a detailed description of the evolution related to my AIP fueled daily issues... I was simply denied without a "blink".
Round two of this process involves appealing the initial SSD denial. I have contracted with a local lawyer who specializes in assisting individuals appeal SSD denials. Being reduced to a one income family we are feeling a significant financial pressure and struggle to keep our "head above water"... this lawyer, like most, agrees to take a percentage of the back SSD monies, as payment for services rendered, if and when the case is won. During our initial visit he asked many questions... it was both exhausting and frustrating... trying to explain Acute Intermittent Porphyria and how it has eroded my nervous system in so many ways... creating daily discomfort and dysfunction that renders me home-bound 90% of the time, to best control my environmental triggers and rest regularly... my situation is not visually concrete. I can walk fine sometimes... I can think and talk fine sometimes... it comes and goes... no cycle... no rhythm...no concrete duration... my endurance is very poor always... great fatigue hovers on me constantly... my muscular strength varies. The lawyer was straight forward, "cases like yours... rare diseases that are not straight forward can be extremely hard to prove". Thankfully he took my case anyhow!
To follow-up I must gather copies of all of my medical records from any health care provider that I have seen. I must also try to get AIP Specialist Statements that clearly support my claimed disability.
What an educational and humbling journey my life has led me on.
The title of this segment is "Going 'off road' with my AIP Treatment Regime let me explain my choice of words... Adhering to "standard of care" medical treatment can be compared to "properly driving on the standard paved road"... that "road" was only taking me so far on my health management journey. Weekly IV Dextrose infusions calmed AIP symptoms for a day or two after each infusion then the benefit was gone. What I also came to know was that these same Dextrose infusions coupled with the glucose tabs I was popping at home contribute to Non-Alcoholic-Fatty-Liver-Disease, Metabolic Syndrome, Obesity and more. The Panhematin infusions also calm my AIP for a day or two, then like the Dextrose the benefit is gone. I have learned that not only do I risk blood clots but continued use of the Panhematin can be a concern related to the added stress it puts on an already compromised liver to break it down. Of coarse I weighed the benefit to the risks and for my situation I decided to continue "searching for the needle in the haystack"... there must be a most natural way to manage my chronic AIP state!
As a nurse I was very hesitant to begin trying anything that I hadn't heard of in a textbook. Nervous or not I needed help! I started researching and reading about cultural practices concerning food as medicine as well as any other "time-tested" treatment remedies used around the world. This is when I decided to do it! I went right "off the road" related to following traditional medicine exclusively. My options opened up when my mind widened the "acceptable" parameters.
Remaining tethered to my original medical practitioners for continued monitoring and acute intervention when necessary, I began a new intervention exploration that allowed me to regain a bit of power, even some control over my disease management!
I started each of the following interventions very slowly in minimal doses to test my individual reaction. If my body tolerated a new low dose intervention, I would gradually adjust the parameters of the intervention until I felt maximum benefit while being ever conscious to maintaining internal "balance".
Psychotherapy and Mind:Body Yoga
My psychotherapist is an advanced practice nurse and a certified yoga instructor. She has proven to be an excellent resource for me in realizing the effects that the mind has on the body as well as the body on the mind. She has a great wealth of knowledge related to both traditional and non-traditional wellness interventions. Psychotherapy nurtures my mind and spirit.
Acupuncture and Nutritional Coaching
I always thought Acupuncture sounded interesting but couldn't "wrap my mind around" the thought of multiple needles being stuck into "weird" places all over one's body. Well as they say, "desperate times call for desperate measures"... my health insurance actually pays for Acupuncture as a chronic pain management therapy! I called... I went... and I have been going weekly ever since! I have found I am able to have significant mental health quieting and pain quieting that lasts for about two days after each treatment! Each visit begins with a personal evaluation and nutritional discussion custom to my individual situation. I feel well cared for and nurtured.
Juicing Organic Fruits & Vegetables
I found that I feel best when I juice carrots and apples at least 12oz daily. I have a juicer that I got at a local department store (~$100.) and it works fine. Carrots help my liver and provide a natural carbohydrate infusion that calms my AIP without any negative effects (except cleaning the juicer after each use).
Wheat grass
I discovered that chlorophyll can be very helpful to someone with a blood disorder like AIP. Chlorophyll has the exact same chemical make-up as heme... except iron is the center component of heme and magnesium is the center of chlorophyll's porphyrin ring!! So I learned to grow my own wheat grass at home and juice one shot-glass full to drink daily. I may work up to twice daily but one is enough at present.
Raw Organic Foods
Raw foods as close the earth as possible are full of unprocessed vitamins, minerals and life. They are alive. I feel completely different (in a good way) when I eat more raw food than cooked. Much lighter in spirit... much "healthier".
Sprouts
I began growing sprouts because it is very easy and fit nicely with my raw food and chlorophyll needs.
Other Food as Medicine
Things that I have come to find help me:
- keep a 95% gluten-free diet
- avoid all bovine dairy products
- keep a soy-free diet
- buy organic fruits and vegetables whenever possible
- buy local and in-season whenever possible (even better when I pick it myself!)
- eat more raw food than cooked
- eat a mostly vegan diet
- monitor protein and listen to my liver
- monitor large quantities of dense carbohydrates at one meal
- be mindful of acid: alkaline balance when eating, eat more alkaline than acid
- be mindful of my personal food sensitivities
- avoid all processed packaged foods as much as possible
I use old fashioned rolled oats, mixed rice types, dried beans, potatoes, turnips, parsnips, rutabagas,carrots and gluten-free flour products as my main starches.
Free-range family hen egg whites, goat cheese, goat kefir, nuts, and dried beans are my primary protein sources.
I love using herbs and spices to enhance my health as well! I especially like ginger, cilantro, onion, garlic,
**For a special treat I freeze whole peeled bananas then put the frozen bananas in a food processor with vanilla almond milk and carob powder... delicious guilt-free "ice cream"!!!
Coffee Enemas
Really??? Yup!!! I actually did it. I know this one is seriously "off road". Believe it or not the coffee enema is one of the most helpful interventions that I use now! This is what I do:
- measure one full quart of distilled water and pour in pot to heat
- measure one to two tablespoons of organic enema coffee beans and grind in coffee grinder
- put ground coffee in pot with distilled water and heat until boiling
- boil for a few minutes then turn off and let cool
- use a kitchen thermometer to check temperature
- when coffee is about 100 to 105 degrees pour through strainer to remove all grounds
- pour coffee into enema bucket
- set coffee bucket up so that it will be higher than body (for me about 14 inches higher than my body)
- place towel under body and lay on right side
- prime enema tubing (allow coffee to fill tubing and clamp off)
- lubricate tip of tubing and rectal opening
- gently insert tube until resistance is felt
- unclasp and allow some coffee to flow into body (one minute)
- re clamp and move tube side to side while gently pushing tube past internal sphincter
- tubing should be inserted about 6 inches or so
- unclasp and allow coffee to slowly infuse into the body
- when all coffee has been successfully infused clamp tube and slowly remove from body
- try to hold coffee in the body for 15 minutes then expel in toilet
- massage abdomen after first round of expelled materials
- I generally produce 2 or 3 rounds of expelled materials
When I first tried the coffee enema I made it very weak, used less water and did it a few times a week... then I progressed to full strength daily enemas first thing every morning. For me this was a great detox but too much on my body to keep up daily. I currently use a coffee enema once or twice weekly and whenever I feel like my liver needs to dump out a toxic load of built up porphyrins and precursors. From what I understand rectal coffee is absorbed by the rectal vascular system and stimulates peristalsis, stimulates the gall bladder to "dump" and stimulates the liver to "dump". Supposedly the liver also increases helpful glutathione production exponentially. I can't verify the logistics, but for me... I feel significantly better after a coffee enema... a bit more energy (lasting 2 to 3 hours), less liver discomfort, less pain, and improved mental clarity.
Raw Goat Milk Kefir
For me, I believe that my life-long constipation has resulted in a bacterial imbalance in my gut where the bad guys are much stronger than the good guys. I have significant vitamin deficiencies (probably from poor absorption) and consistent abdominal bloating with lots of gas and abdominal fluid. I recently learned that the gut/ bowel can become hyper-permeable over time due to poor digestion, and bacterial imbalances. When this happens things pass through the gut/bowel wall into the blood vessels and abdominal space that should not be there. This causes trouble of all sorts. Well, the coffee enemas helped get rid of a lot of the bad guys but, it got rid of my good guys too. So I have begun to replace my good bacteria naturally using raw goat milk kefir. I am starting slowly... just one shot a day first think in the morning 30 to 60 minutes before eating (after the coffee enema on those days of the week). It has only been a week so far, but it is working! Commercial goat milk kefir is available, but it has been pasteurized killing all of the helpful natural enzymes. I will use the commercial stuff if raw is unavailable because the live bacteria are still present.
Why goat milk... my body is sensitive to bovine (cow) dairy. Goat dairy is simpler and easier in the human digestive system. Goat milk is widely used all over the world.
Natural Compounded Estrogen Replacement
I had been repeatedly told that the standard commercially produced vaginal estrace cream applied once weekly was my only option for hormone replacement therapy (HRT)due to surgically induced early menopause. The standard HRT vaginal estrogen cream is riddled with preservatives that my body hates (methyl parabenes, polypropylene glycol, etc.) not to mention it triggered my AIP to higher levels and migrain headaches... ugh it was an awful necessity! Then I stumbled on some wonderful information that prompted me to telephone my local "compounding pharmacy" and ask if there are any "natural"HRT options... there are!!! I now have a custom natural HRT vaginal estrogen cream compounded for me. AIP flare-ups related to HRT, vaginal atrophy and painful intercourse are a thing of the past! Natural is best for me!!!
Explaining my "off road" choices to my Hematologist
Today was the first time that I have seen my Hematologist since mid December 2011. I had been doing weekly Dextrose infusions and independently decided that I needed to try alternative therapies. I was very nervous about explaining my abrupt absence from on-going treatment. Thank you God in Heaven... he was warm and understanding. I left feeling at ease and in good collaboration. We both agree that if/ when my AIP escalates to unmanageable levels he will provide the standard interventions. I will continue to research and seek methods that work for me in relation to long term disease management at home.
Monday, December 19, 2011
The "Book"
This Blog is a "Warehouse" storing my thoughts and experiences related to "Living with AIP".
Then to turn my Blog into a Book...
As time has passed it has become really really hard for me to try to pull it all together. I feel eroded from the inside out.
Editing, formatting, publishing and marketing a book feels like mission impossible with my current challenges.
My nervous system has taken a serious hit from the chemical corrosive nature that chronically Active AIP creates. After trying to "push through it" and battling with denial... I am learning to accept that I have to respect my limitations... and try hard to make the most of better days.
Finishing a well written book that will help others navigate their rare disease is still my personal goal!!
But...
I think that I need to consider re-investing in regular Blog Writing...
Because it is therapeutic... it is good for me.
My family is as supportive as they know how to be... but writing allows me to vent and sort my thoughts in a calmer... more organized... less dramatic... more healthy fashion.
Since October 2011 I have reached out to "Modern Medicine" in hopes that they could help me feel better... I had done that multiple times in my life with statistically poor help to stress benefit. This time has turned out to be little different... now what???
More Spirituality...
More Alternative and Cognitive/Mental Therapies...
Daily Vegetable & Fruit Juicing???
I am tired out...
but soldiering on in hopes of learning to dance well with my health situation.
Then to turn my Blog into a Book...
As time has passed it has become really really hard for me to try to pull it all together. I feel eroded from the inside out.
Editing, formatting, publishing and marketing a book feels like mission impossible with my current challenges.
My nervous system has taken a serious hit from the chemical corrosive nature that chronically Active AIP creates. After trying to "push through it" and battling with denial... I am learning to accept that I have to respect my limitations... and try hard to make the most of better days.
Finishing a well written book that will help others navigate their rare disease is still my personal goal!!
But...
I think that I need to consider re-investing in regular Blog Writing...
Because it is therapeutic... it is good for me.
My family is as supportive as they know how to be... but writing allows me to vent and sort my thoughts in a calmer... more organized... less dramatic... more healthy fashion.
Since October 2011 I have reached out to "Modern Medicine" in hopes that they could help me feel better... I had done that multiple times in my life with statistically poor help to stress benefit. This time has turned out to be little different... now what???
More Spirituality...
More Alternative and Cognitive/Mental Therapies...
Daily Vegetable & Fruit Juicing???
I am tired out...
but soldiering on in hopes of learning to dance well with my health situation.
December 2011 Letters to Doctors
December 1, 2011
Dear Doctor__ (a letter faxed to my primary Care Physician),
First, I want to wish you and your family a very happy holiday season. You have been a kind, invested partner in my health journey and I sincerely appreciate you. Next, I want to update you on my ongoing health situation. Since our last meeting I have continued to struggle with daily health issues that inhibit my quality of life. I remain unable to work. I now regularly see you for Primary Care (Q6ms), a Hematologist (Q2wks), a Hepatologist (Q6ms), a Psychiatrist (Qmo), a Therapist (Qwk), an AIP Specialist (PRN) and an Endocrinologist (Q12ms). I also participate in monthly SKYPE meetings as part of my participation in the Mount Sinai NYC long-term AIP clinical study. I follow a gluten free, dairy free diet (reality= 90% of time). I avoid all AIP triggers within my control. Regarding current treatment… I take Gabapentin 300mg TID, Phenergan as needed for nausea and agitation, Estrace QWK, Naproxen PRN for moderate pain, and weekly Dextrose infusions the day after Estrace . The Hematologist is collaborating with Mount Sinai regarding AIP Tx Mgmt… we are considering regular Hematin infusions… but are trying the dextrose first because I seem to have good improvement with dextrose alone (1 to 2 days of lasting benefit vs little to no lasting benefit with Hematin). Prior to Thanksgiving I went to the hospital’s Out-Pt Special Procedures Unit to have an Ultrasound Guided PICC Insertion… they tried 3 times and failed x3. I have been getting peripheral lines each Dextrose infusion at present. I have follow-up visit with the Hematologist tomorrow (12/02/2011), hopefully we will make a new plan.
The daily neuropathy pain in my limbs has significantly decreased with the Gabapentin. My mental health and cognitive ability continue to be a challenge. The Psychiatrist has been following me with monthly visits and I now see a good Therapist weekly.
With a “heavy heart” I went to the Social Security Office 11/23/2011 and officially applied for long-term disability.
I am scheduled to see you again in January 2012, but wanted to connect with you to let you know where I am in my health journey now.
Best Wishes & Blessings~
T. Suzanne Jaynes-Emmert
December 2, 2011
Dear Dr. ___ (a letter read to my hematologist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. We have partnered in my health journey for almost 4 years now. I respect you and trust you to take care of me when I am at my worst. Due to the neuro-corrosive nature of my illness, my intellectual stability has become unreliable. It is becoming increasingly difficult to manage my disease as independently as I use to. I am at a point where I must rely on others to help navigate my path. The problem is that I have a growing lack of confidence due to multiple human errors and a lack of both investment and thorough follow-through. My anxiety and stress level have been negatively impacted by seeking medical help. I feel scared and lack the confidence that I want to have in the medical profession.
Examples:
-Medical Providers that I am entrusting my emotions, my physical body and my very life to, cause me great anxiety due to a significant knowledge deficit related to the Pathophysiology of Acute Intermittent Porphyria… the Porphyria Drug Database is rarely referred to without my prompting and I fear receiving a drug that will cause me further problems… improper porphyrin tests are ordered and incorrectly gathered during acute attacks… I am not sure if staff are aware of the risk of respiratory paralysis when inpt… I don’t feel heard when I say something makes me feel worse after trying a new treatment… I try to provide educational resources (CEUs, brochures, scholarly articles) but I feel my attempts to educate fall on deaf ears.
-Plan of Tx discussed at office visit differs from executed medical follow up
-Ultrasound Guided PICC Placement Failed x3 with significant pain
-Lack of Care Planning Re: PICC teaching/management after 4 nurse:pt discussions
-Direct untruth Re: Home Health Referral to Amedysis… not done
Positive Action Steps I have taken:
-Set up Case Management through my Health Insurance
-Started a medical coordination log
-Engaged a new Therapist with AIP experience (2 patients)
-Monthly Psychiatry Appointments
-Write out organized thoughts for medical appointments prior to visit
Idea for Treatment Plan:
-Discuss potential impact of 1 or 2 dextrose infusions qwk… Diabetes risks… other risks… monitoring protocol… what if Diabetes develops? How to manage both???
-Arrange Port placement in January (consider liver biopsy?)
-Request a 23hour obv to receive Hematin and dextrose after placement… to follow up anxiety and stress of procedure
-Continue weekly dextrose the day after Estrace at infusion center with a peripheral line until port in place
-After port… if advisable 2x/wk dextrose… infusion center or HOME infusions???
-After port… Hematin as advised
-??Wt management thoughts to minimize diabetic risk? Current GF/Dairy-free, ~1800 cal/day, exercise QD as tol, conscious of glycemic index, thyroid goitergens and liver: protein relationship
Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.
Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient
December 2, 2011
Dear Dr. ___ (letter read to Psychiatrist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. I am glad that we have partnered in my health journey and I appreciate your investment in assisting me in the management of a rare medical situation.
The gabapentin continues to help ease my everyday neuro-sensory hypersensitivities and peripheral neuropathies.
I have found the Klonopin is something I cannot take… my Porphyria is too sensitive to small triggers at present and I would feel more comfortable with a PRN antianxiety medication that is safe for AIP people.
I have been using the Phenergan for nausea, agitation and restlessness. How do you feel about a low dose pill form that I could use more regularly for the agitation and restlessness?
Action Steps I have taken:
-Set up Case Management through Health Insurance
-Started a medical coordination log
-Applied for Social Security Disability
-Engaged a new Therapist with AIP experience x2
-Write out organized thoughts for medical appointments prior to visit
Tentative Treatment Plan:
-Change PRN Anxiety Med to AIP Safe
-?Phenergan pills for agitation/restlessness
-Therapist Qwk
Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.
Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient
Dear Doctor__ (a letter faxed to my primary Care Physician),
First, I want to wish you and your family a very happy holiday season. You have been a kind, invested partner in my health journey and I sincerely appreciate you. Next, I want to update you on my ongoing health situation. Since our last meeting I have continued to struggle with daily health issues that inhibit my quality of life. I remain unable to work. I now regularly see you for Primary Care (Q6ms), a Hematologist (Q2wks), a Hepatologist (Q6ms), a Psychiatrist (Qmo), a Therapist (Qwk), an AIP Specialist (PRN) and an Endocrinologist (Q12ms). I also participate in monthly SKYPE meetings as part of my participation in the Mount Sinai NYC long-term AIP clinical study. I follow a gluten free, dairy free diet (reality= 90% of time). I avoid all AIP triggers within my control. Regarding current treatment… I take Gabapentin 300mg TID, Phenergan as needed for nausea and agitation, Estrace QWK, Naproxen PRN for moderate pain, and weekly Dextrose infusions the day after Estrace . The Hematologist is collaborating with Mount Sinai regarding AIP Tx Mgmt… we are considering regular Hematin infusions… but are trying the dextrose first because I seem to have good improvement with dextrose alone (1 to 2 days of lasting benefit vs little to no lasting benefit with Hematin). Prior to Thanksgiving I went to the hospital’s Out-Pt Special Procedures Unit to have an Ultrasound Guided PICC Insertion… they tried 3 times and failed x3. I have been getting peripheral lines each Dextrose infusion at present. I have follow-up visit with the Hematologist tomorrow (12/02/2011), hopefully we will make a new plan.
The daily neuropathy pain in my limbs has significantly decreased with the Gabapentin. My mental health and cognitive ability continue to be a challenge. The Psychiatrist has been following me with monthly visits and I now see a good Therapist weekly.
With a “heavy heart” I went to the Social Security Office 11/23/2011 and officially applied for long-term disability.
I am scheduled to see you again in January 2012, but wanted to connect with you to let you know where I am in my health journey now.
Best Wishes & Blessings~
T. Suzanne Jaynes-Emmert
December 2, 2011
Dear Dr. ___ (a letter read to my hematologist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. We have partnered in my health journey for almost 4 years now. I respect you and trust you to take care of me when I am at my worst. Due to the neuro-corrosive nature of my illness, my intellectual stability has become unreliable. It is becoming increasingly difficult to manage my disease as independently as I use to. I am at a point where I must rely on others to help navigate my path. The problem is that I have a growing lack of confidence due to multiple human errors and a lack of both investment and thorough follow-through. My anxiety and stress level have been negatively impacted by seeking medical help. I feel scared and lack the confidence that I want to have in the medical profession.
Examples:
-Medical Providers that I am entrusting my emotions, my physical body and my very life to, cause me great anxiety due to a significant knowledge deficit related to the Pathophysiology of Acute Intermittent Porphyria… the Porphyria Drug Database is rarely referred to without my prompting and I fear receiving a drug that will cause me further problems… improper porphyrin tests are ordered and incorrectly gathered during acute attacks… I am not sure if staff are aware of the risk of respiratory paralysis when inpt… I don’t feel heard when I say something makes me feel worse after trying a new treatment… I try to provide educational resources (CEUs, brochures, scholarly articles) but I feel my attempts to educate fall on deaf ears.
-Plan of Tx discussed at office visit differs from executed medical follow up
-Ultrasound Guided PICC Placement Failed x3 with significant pain
-Lack of Care Planning Re: PICC teaching/management after 4 nurse:pt discussions
-Direct untruth Re: Home Health Referral to Amedysis… not done
Positive Action Steps I have taken:
-Set up Case Management through my Health Insurance
-Started a medical coordination log
-Engaged a new Therapist with AIP experience (2 patients)
-Monthly Psychiatry Appointments
-Write out organized thoughts for medical appointments prior to visit
Idea for Treatment Plan:
-Discuss potential impact of 1 or 2 dextrose infusions qwk… Diabetes risks… other risks… monitoring protocol… what if Diabetes develops? How to manage both???
-Arrange Port placement in January (consider liver biopsy?)
-Request a 23hour obv to receive Hematin and dextrose after placement… to follow up anxiety and stress of procedure
-Continue weekly dextrose the day after Estrace at infusion center with a peripheral line until port in place
-After port… if advisable 2x/wk dextrose… infusion center or HOME infusions???
-After port… Hematin as advised
-??Wt management thoughts to minimize diabetic risk? Current GF/Dairy-free, ~1800 cal/day, exercise QD as tol, conscious of glycemic index, thyroid goitergens and liver: protein relationship
Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.
Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient
December 2, 2011
Dear Dr. ___ (letter read to Psychiatrist at office visit),
At times I have trouble finding my words when I need them. I have found that writing out my thoughts ahead of time can greatly improve the clarity of my communication. Please hear me when I say how much I admire your knowledge and medical insight. I am glad that we have partnered in my health journey and I appreciate your investment in assisting me in the management of a rare medical situation.
The gabapentin continues to help ease my everyday neuro-sensory hypersensitivities and peripheral neuropathies.
I have found the Klonopin is something I cannot take… my Porphyria is too sensitive to small triggers at present and I would feel more comfortable with a PRN antianxiety medication that is safe for AIP people.
I have been using the Phenergan for nausea, agitation and restlessness. How do you feel about a low dose pill form that I could use more regularly for the agitation and restlessness?
Action Steps I have taken:
-Set up Case Management through Health Insurance
-Started a medical coordination log
-Applied for Social Security Disability
-Engaged a new Therapist with AIP experience x2
-Write out organized thoughts for medical appointments prior to visit
Tentative Treatment Plan:
-Change PRN Anxiety Med to AIP Safe
-?Phenergan pills for agitation/restlessness
-Therapist Qwk
Thank You for valuing my situation and allowing me to be heard.
I look forward to your thoughts and comments.
Respectfully~
T. Suzanne Jaynes-Emmert
AIP Patient
Sunday, October 9, 2011
Blog to Book
Wow, I can't believe that it has been a month since my last entry!So very many things have happened since then. Life is relentless that way... nothing stops the forward motion of it all.
Sometimes life's perseverance feels like a blessing...
and others can seem insensitive and progressively cool.
My life is always a "mixed bag" of both... vacillating as my journey unfolds.
The one year caption of, "My Life with Acute Intermittent Porphyria" has come and gone now. My next writing phase will be identifying a blog to book program and converting this past year's blog entries into a book format. After doing a little research it looks as though I have quite a lot of work ahead of me, editing, front book work, back book work, publishing and distributing the finished project. The thought of all the foreign tasks seems unmanageable...
Thankfully, I am empowered by a strong internal motivation to turn the challenges of my experiences into a "helping hand" extending a sense of understanding and validation to others who struggle with AIP worldwide.
Sometimes life's perseverance feels like a blessing...
and others can seem insensitive and progressively cool.
My life is always a "mixed bag" of both... vacillating as my journey unfolds.
The one year caption of, "My Life with Acute Intermittent Porphyria" has come and gone now. My next writing phase will be identifying a blog to book program and converting this past year's blog entries into a book format. After doing a little research it looks as though I have quite a lot of work ahead of me, editing, front book work, back book work, publishing and distributing the finished project. The thought of all the foreign tasks seems unmanageable...
Thankfully, I am empowered by a strong internal motivation to turn the challenges of my experiences into a "helping hand" extending a sense of understanding and validation to others who struggle with AIP worldwide.
Saturday, September 10, 2011
Life's Path...
The "Spirit of Me" feels lighter today...
I feel uplifted, positive and yes, even hopeful.
I think I had started loosing hope for a "better tomorrow" a while back... each day things just seemed to feel less than par... or worse.
I really struggle when I find myself in those ruts.
There are several aspects to contend with in deciphering why I vacillate in this cyclic, manic-depressive type fashion...
My twin eight year olds' behavioral-mental wellness challenges that beat on my stress nerve like a iron mallet to a piece of glass... sharp edges and complex shatter patterns... the whole package ignites my Porphyria on a daily basis like gas on a flame. My goal is to identify and secure solid therapeutic treatment to help them heal.
When I am "sick", my mind, body and soul become depleted... and my family initially goes on "auto-pilot". If my "illness" persists long, the whole family dynamic turns chaotic and dysfunctional. My husband becomes overburdened, resentful and angry. My children become needy, craving attention, acting out to get it, matters become even worse.
I feel physically miserable, emotionally drained and mentally "not myself". Guilt strikes me... I feel guilty sometimes about the fallout that these AIP periods cause. Sometimes I get angry... angry because it is not MY fault! I don't want to be like this! If the STRESS level weren't consistently SO unbelievably high in my home life... AIP might be much less active.
Usually after a spell of feeling just awful, and unable to do much more than rest in the bed... I will wake up one day feeling like a normal person... no stifling pains, no nausea... I have emotional calm, mental clarity. I want to take on the world... make up for all the time I "lost".
I did the 26 blood tests and now I have been to my Primary Doctor. All tests back so far area within normal parameters. My liver enzymes are slightly elevated. For the first time in many years all of my vitamin levels, especially Vitamin "A" have stayed within normal limits without high doses of supplements! My vitamin levels normalized after I went gluten and bovine dairy free. My theory is that I have a sensitivity to gluten and a known sensitivity to the whey in bovine dairy... each time I consume these products I develop significant indigestion, gas, bloating, headaches and joint pain with swelling within 24 hours. Anything that causes these types of reactions is obviously irritating one's digestive system... with irritation comes swelling and decreased performance ability. I believe that my nutrients were not being absorbed properly due to on-going irritation... even with significant amounts of supplements in addition to wholesome foods.
An interesting tid-bit I was told long ago is that "when someone has frequent urinary tract infections Vitamin "A" stores can be depleted"???? Also, "people who have both a Vitamin "A" deficiency and an iron deficiency (anemia) can be difficult to heal the anemia issues"?????
I will keep to my new way of eating... because it makes me feel better.
My doctor was her pleasant self as always. I wasn't feeling my best that day... but I was ok. She spent about 40 minutes with me, evaluating my situation. My next visit is scheduled in 3.5 months... short-term disability renewed... long-term disability denied! Denied! Denied? My doctor knows that STRESS is an enormous AIP trigger. She also knows that my son's untreated psychological/behavioral condition is my primary STRESSOR. With proper treatment his behaviors will become regulated and my STRESS will be significantly lessened. Lower stress levels create the possibility that I may return to some form of nursing work.
I was angry with her initially... I have tried and tried... I haven't found anyone who can help him... what if I never can! Ahhh a mental switch flipped for me! I can, I will, and I MUST find the right intervention to help my son! There is NO other option. Finding him a solution to his challenges provides the only solution to a large part of my challenges (in theory anyhow).
I went to the hospital today. Externally I looked like I was dressed for a yoga class. They said, "no metal at all on your clothing for an MRI". Internally I was a little nervous. I have never had an MRI before. What if the IV contrast made me sick? I didn't know what to expect at all. I was digging up harbored anger and resentment about always being alone at every new or "scary" point in my health management. I shook it off... it wasn't positive or helpful. The woman who did my MRI was very kind and the procedure wasn't bad at all.
After the MRI I remembered to ask for a "disk" copy. The Liver Specialist had requested I bring him one. Then I went to see who was sitting at my old desk...
Yeah two of my favorite coworkers! We had a good visit and I went down to our main department area. My boss was in a meeting so I scheduled an appointment with her for this coming Tuesday. Then I spoke with our Pediatric Social Worker. She asked and I summarized my son's situation. She gave me the name of a local specialist that might be able to help! Then I went in to talk to the lady that I was hoping to "job-share" with come April 2012. She has a small office to herself and reviews patient charts filing appeals for denials, and submitting clinical information for insurance company review. She had devastating personal news... her husband was quite unwell. She would like to start job-sharing as soon as possible. Hmm I thought I wonder if I am ready to try? I wonder if my doctor thinks I'd be ready for this type of work? I wonder if my old boss would let me give it a try? So many, "I wonders"... so much happened in just two hours time yesterday morning. I meet with my boss on Tuesday, till then I will pray for guidance and call the suggested doctor for my son first thing Monday morning.
As I readied for bed last night I reflected on the day. Isn't it ironic that you can wake up on one path in life... then go to bed that very same day with a whole new direction available and ready for exploration... life is exciting, scary at times... but NEVER hopeless.
Friday, September 2, 2011
Bits and Pieces of Me Lately
As noted, I have really been struggling lately.
I am schedualed to see my Primary Doctor next Wednesday.
I have my first MRI, with IV contrast, next Friday.
I follow it all up with an evaluation by my Hepatologist.
I am currently receiving "Short-Term Disability" due to a "Medical Leave of Absence" from my half-time job as a Nurse Care Coordinator at the local Emergency Department. I love the nursing profession and am proud to be called a nurse... but I don't know if I will ever have my disease "regulated" enough to be productive as a reliable "employee" again. That makes me so sad.
My joy is that I still have the ability to write, to share, to validate and to help other "patients" like myself via my written story.
Just the other day my daughter dropped in for an unexpected visit.
It was wonderful to see her.
Even though she lives minutes away... she is 20 years old and keeps a very busy life. As we sat and talked on the living room sofa, I confessed that I had been really struggling with AIP and with life. I apologized to her. Many times when we see each other I bring up AIP.
"I don't want, nor have I ever wanted AIP to be our strongest common ground".
My problem is... when I am with "you" (my daughter) "you" really "understand" what the "storm" feels like inside my body... you understand without trying to find words or make analogies.
I have been feeling like an alien on a planet where no one understands me...
I feel confused...emotional... secluded... in pain and medically without hope.
With you I feel validated, understood, believed in.
I am truly grateful that my daughter has not experienced AIP issues to the degree that I have and do... yet she is the only one who can, "see beneath my skin".
For such a young woman she showed great kindness, warmth and depth of character in comforting my spirit that day.
She does worry me regarding her own AIP disease management... she turns 21 soon and is planning to "go out"...
Alcohol has been a significant trigger for her in the past.
She is also considering re-trying hormone contraception, which has also been a significant trigger for her in the past.
She has a clear understanding of AIP, so I know that as an adult she will make her own choices... as we all do.
Today I reached out for the "strength" that connecting with a sibling can give.
My brother and I have known each other all of his life and most of mine, 39 years now. In many ways we are much a like. We are fueled by determination, perseverance, internal motivation and ethical responsibility; sharing common perceptions about our upbringing.
In other ways we compliment each other... I am deeply empathetic, I thrive on sharing the depth of my soul with a small handful of close family members... I wear my heart and the truth on my sleeve for all to know who I am, and what I am "about".
I have always known my brother to be an "excellent poker player" in the game of "real life"... rarely does he show the world how he truly feels or what his plans are... "his thoughts are his own". Many, many times I wish I were more like him... because openness brings pain and insult when the world is not as kind or caring as one might hope.
Together, I guess we as siblings are a "balanced set".
Life has inspired change in both our lives in the past year...
My sons were diagnosed with some significant behavioral issues.
My brother sadly divorced early in the year after a long term marriage.
Our beloved grandmother died in early Autumn. (Probable AIP)
Our father died in early Winter, after a long dance with many health issues throughout his life. (Diagnosed with AIP days prior to death.)
My brother happily remarried on New Years Day 2011.
My AIP remained chronic, vacillating in severity throughout the year.
During this past year, under significant circumstances, I have felt my brother begin to share more of himself with me. Although I know he is not "magically super-human" to me, my brother has a very strong spirit! I do love that about him... like grandma, dad, grandpa Wood, and mom (who thankfully is still here on earth).
Just like "borrowing a cup of sugar from a good neighbor", I need to "borrow 3 cups of extra strong spirit" to get me through an "empty spot in the cupboard of my life".
My text to him today read:
Thank you for trying to return my "I miss you" text with two phone calls... that I unfortunately missed.
Days of late are extremely trying...
My son's behavioral/ psychological situation will NOT be denied and commands constant attention/ investment.
My mind... my body and my spirit are drained.
I search daily for the "silver lining" or the "light at the end of the tunnel".
Nothing leads me to the comfort of answers, interventions or change.
My Porphyria has been constantly "prodded" by the situation, until it now "ROARS like a Lion".
Days are hard and I feel "jailed" by life.
Any insight that you might have would be appreciated... in lieu of your physical presence... that always provides a surge of strength to a sister's heart.
With Much Love/ Your Sister
I am schedualed to see my Primary Doctor next Wednesday.
I have my first MRI, with IV contrast, next Friday.
I follow it all up with an evaluation by my Hepatologist.
I am currently receiving "Short-Term Disability" due to a "Medical Leave of Absence" from my half-time job as a Nurse Care Coordinator at the local Emergency Department. I love the nursing profession and am proud to be called a nurse... but I don't know if I will ever have my disease "regulated" enough to be productive as a reliable "employee" again. That makes me so sad.
My joy is that I still have the ability to write, to share, to validate and to help other "patients" like myself via my written story.
Just the other day my daughter dropped in for an unexpected visit.
It was wonderful to see her.
Even though she lives minutes away... she is 20 years old and keeps a very busy life. As we sat and talked on the living room sofa, I confessed that I had been really struggling with AIP and with life. I apologized to her. Many times when we see each other I bring up AIP.
"I don't want, nor have I ever wanted AIP to be our strongest common ground".
My problem is... when I am with "you" (my daughter) "you" really "understand" what the "storm" feels like inside my body... you understand without trying to find words or make analogies.
I have been feeling like an alien on a planet where no one understands me...
I feel confused...emotional... secluded... in pain and medically without hope.
With you I feel validated, understood, believed in.
I am truly grateful that my daughter has not experienced AIP issues to the degree that I have and do... yet she is the only one who can, "see beneath my skin".
For such a young woman she showed great kindness, warmth and depth of character in comforting my spirit that day.
She does worry me regarding her own AIP disease management... she turns 21 soon and is planning to "go out"...
Alcohol has been a significant trigger for her in the past.
She is also considering re-trying hormone contraception, which has also been a significant trigger for her in the past.
She has a clear understanding of AIP, so I know that as an adult she will make her own choices... as we all do.
Today I reached out for the "strength" that connecting with a sibling can give.
My brother and I have known each other all of his life and most of mine, 39 years now. In many ways we are much a like. We are fueled by determination, perseverance, internal motivation and ethical responsibility; sharing common perceptions about our upbringing.
In other ways we compliment each other... I am deeply empathetic, I thrive on sharing the depth of my soul with a small handful of close family members... I wear my heart and the truth on my sleeve for all to know who I am, and what I am "about".
I have always known my brother to be an "excellent poker player" in the game of "real life"... rarely does he show the world how he truly feels or what his plans are... "his thoughts are his own". Many, many times I wish I were more like him... because openness brings pain and insult when the world is not as kind or caring as one might hope.
Together, I guess we as siblings are a "balanced set".
Life has inspired change in both our lives in the past year...
My sons were diagnosed with some significant behavioral issues.
My brother sadly divorced early in the year after a long term marriage.
Our beloved grandmother died in early Autumn. (Probable AIP)
Our father died in early Winter, after a long dance with many health issues throughout his life. (Diagnosed with AIP days prior to death.)
My brother happily remarried on New Years Day 2011.
My AIP remained chronic, vacillating in severity throughout the year.
During this past year, under significant circumstances, I have felt my brother begin to share more of himself with me. Although I know he is not "magically super-human" to me, my brother has a very strong spirit! I do love that about him... like grandma, dad, grandpa Wood, and mom (who thankfully is still here on earth).
Just like "borrowing a cup of sugar from a good neighbor", I need to "borrow 3 cups of extra strong spirit" to get me through an "empty spot in the cupboard of my life".
My text to him today read:
Thank you for trying to return my "I miss you" text with two phone calls... that I unfortunately missed.
Days of late are extremely trying...
My son's behavioral/ psychological situation will NOT be denied and commands constant attention/ investment.
My mind... my body and my spirit are drained.
I search daily for the "silver lining" or the "light at the end of the tunnel".
Nothing leads me to the comfort of answers, interventions or change.
My Porphyria has been constantly "prodded" by the situation, until it now "ROARS like a Lion".
Days are hard and I feel "jailed" by life.
Any insight that you might have would be appreciated... in lieu of your physical presence... that always provides a surge of strength to a sister's heart.
With Much Love/ Your Sister
26 Tests for the Hepatologist (Liver Doctor)
I had an order for blood work to be drawn, one week prior to my upcoming abdominal MRI, so today is exactly one week prior.
"Fastng" began at 8pm last night.
I dropped the children off at school around 8:50am this morning and drove directly to the lab to have my labs done as ordered.
I signed in at 9:18am and one hour later I had my 26 tests (13 tubes) drawn from my right arm. (Over $3K without insurance... $15. copay with insurance... thank God for my husband and his job!)
I have been having a lot of "Porphyria" activity this week... but after having an EXTREMELY stressful morning with my son and fasting for 14 hours, when I asked the lab technician if I could use the restroom, my urine looked like "dark ice tea" and smelled of "old dirty socks".
"Here we go again!" I thought as I rushed to the closest "Starbucks" where I ordered not one, but TWO breakfast sandwiches and a "Tall Skinny Hot Chai". I ate every bit of it all as I drove home...let the dog out...then back in... and now find myself in bed typing my thoughts and day away until I can calm my body enough to rest a bit.
"Fastng" began at 8pm last night.
I dropped the children off at school around 8:50am this morning and drove directly to the lab to have my labs done as ordered.
I signed in at 9:18am and one hour later I had my 26 tests (13 tubes) drawn from my right arm. (Over $3K without insurance... $15. copay with insurance... thank God for my husband and his job!)
I have been having a lot of "Porphyria" activity this week... but after having an EXTREMELY stressful morning with my son and fasting for 14 hours, when I asked the lab technician if I could use the restroom, my urine looked like "dark ice tea" and smelled of "old dirty socks".
"Here we go again!" I thought as I rushed to the closest "Starbucks" where I ordered not one, but TWO breakfast sandwiches and a "Tall Skinny Hot Chai". I ate every bit of it all as I drove home...let the dog out...then back in... and now find myself in bed typing my thoughts and day away until I can calm my body enough to rest a bit.
Wednesday, August 31, 2011
Information and Support That Help Me with My Health & AIP
- Blog Browsing: looking at other people's web logs to see what they have to share about their situations... gastroparesis, peripheral neuropathy, dealing with chronic disease in general.
Just choose a web browser and type in "____ blog".
- Reading Published Memoirs: examining how others, "tell their story" in memoir format... gaining insight regarding how various chronic health situations change people's lives.
Just go to the local public library and type in "memoir" as the key look-up word.
- The Magazine "Life Extension" provides very in-depth information about the latest integrated medical research findings around the world... they do "push" their vitamin/other supplements.
- "Advance Magazine for Speech-Language Pathologists & Audiologists", vol.18, NO.44, November 3,2008 had an excellent article (pg 7,8,9 & 34) "The Narrative Self Restoring Patient Identity in Neurogenic Disorders" written by Jason Mosheim (www.advanceweb.com/speech).
For me the article validated how I feel alienated about interacting with other people at times. Sometimes communicating is extremely difficult during an active AIP phase. This article discusses this issue in relation to several neurogenic disorders and offers ideas on how to improve the situation.
This article references a book that I have not yet read, but plan to. The book is called, "Neurogenic Communication Disorders: Life Stories and the Narrative Self" written by Shadden, B., Hagstrom, F., Koski, P. (2008)
For more information contact: Barbara Shadden, PhD, bshadde@uark.edu
- The Book, "PORPHYRIA THE UNKNOWN DISEASE" written by Diana Deats-O'Reilly
This book provides a good basic overview about what Porphyria is. It also presents several patient case studies to demonstrate what it is like to experience active episodes of Porphyria. I found this book to be an excellent springboard for researching AIP prior to my official DNA diagnosis.
- The Book, "Porphyria A Lyon's Share of Trouble" written by: Desiree Lyon Howe
Ms. Howe's book gives a personal account of her life with AIP. She is inspirational in demonstrating determination to assist others with Porphyria. She is one of the initial founders of the American Porphyria Association (APF). The APF is a significant resource for information, assistance and support for those with Porphyria.
- "UNSTUCK Your Guide to the Seven-Stage Journey Out of Depression" by: James S. Gordon, MD
This book gives great natural interventions to help combat the symptoms of depression that all people with AIP are prone to.
- "Healing the Planet ONE PATIENT AT A TIME... A Primer in Environmental Medicine" by: Jozef J. Krop, MD, FAAEM
This is one of my favorite books. I learned so much about the human: environmental interaction and how one impacts the other. So very many helpful insights...I think I will sit and read it again!
- "The NEW GLUCOSE Revolution Low GI Gluten-Free Eating Made Easy... The Essential Guide to the Glycemic Index and Gluten-Free Living" by: Dr.Jennie Brand-Miller, Kate Marsh and Philippa Sandall
Long term hypovitaminosis (low blood levels of essential vitamins) was one outcome of my gastrointestinal vitamin absorption dysfunction. After reading this book I became better at identifying long-acting carbohydrate choices that are gluten-free. After trying a gluten-free/ bovine-dairy-free diet for several months my vitamin levels are now within normal limits (without supplements) among other resolved issues. This book is packed with excellent health information!
- "Notes on Nursing What It Is, And What It Is Not... Florence Nightengale with an introduction by Ramona Salotti"
This book represents the foundation of my beliefs in nursing as a career/ calling.
- "Animal, Vegetable, Miracle... A Year of Food Life", by: Barbara Kingsolver with Steven L.Hopp and Camille Kingsolver
A New York Times Bestseller! A city family goes rural and learns to live off the land (literally) and appreciate a "simpler" way of life.
- "Health Promotion Strategies through the Life Span", by: Ruth Beckmann Murray and Judith Proctor Zentner.
The title says it all. A great resource book for positive health maintenance strategies.
- "Integrative Health Promotion... Conceptual Bases For Nursing Practice", by: Susan Kun Leddy
The title says it all. A great resource book for positive health maintenance strategies.
- University of Iowa College of Nursing Online Human Genetics and Genomics Courses.
- The Genetics Education Program for Nurses (GEPN) at Cincinnati Children's Hospital Medical Center... Web-Based Genetics Institute... and other online programs.
- Genetic Nursing Credentialing Commission (GNCC): web search/ information
- Certified Nurse Life Care Planner Certification Board: web search/ research
- Epigenetics web search/ research... how environmental influences effect gene expression
- Porphyria Nurse Care Coordination... web search/ research
- Some Informational Web Sites:
ehsc.science.oregonstate.edu
nursece.com
geneticalliance.org
cdc.gov
doesitruninthefamily.org
http://www.healthyhomestraining.org
- Yoga Nursing
- Digital Health Records/ Health Information Systems: web search/ research
- NeuroSensory Dysfunction/Impairment... also known as Sensory Processing Disorder: web search/ research
- The "Yacker Tracker Deluxe" sound monitor related to noise level control
- The Surround Air XJ-3800 Intelli-Pro Air Purifier: seven filters one machine (a HEPA filter, an activated carbon filter, an ionizer, a photocatalytic (TiO2) filter, a germicidal UV lamp, a washable pre-filter, and an electrostatic dust collector)
- 5 Stage Reverse Osmosis Water Filter System With Storage Tank
- Many books and publications by Dr. Andrew Weil
- "Environmental Medicine" web search/ research
- "Environmental Health Nursing" web search/ research
- "American Holistic Nurses' Association Guide to Common Chronic Conditions: Self-Care Options to Complement Your Doctor's Advice" by: Carolyn Chambers Clark
- "The Omnivore's Dilemma: A Natural History of Four Meals" by: Michael Pollan
An excellent book about the food we eat...its quality and content, where it comes from, how government regulates food and marketing nuances. I used the audio book format over a very long drive.
- "In Defense of Food: An Eater's Manifesto" by: Michael Pollan
This book seemed to be a continuation of his first book, but still good information.
- "The Maker's Diet" by Jordan Rubin
The author of this book tells his story of terrible illness only to become well by following dietary/ lifestyle guidelines outlined in the Bible.
- Relaxation and Meditation... web search/ research
- Rare Disease Advocacy Research Education... Rare Disease Network
- "The Comfort of Home... A Complete Guide for Caregivers" by: Maria M. Meyer with Paula Derr, RN
- The Chronic Fatigue Immune Deficiency Syndrome Association of America
- Stanford School of Medicine "Chronic Disease Self Management Program"
(http://patienteducation.stanford.edu/programs/cdsmp.html)
This is a wonderful program offered via many "Area Agencies on Aging" throughout the United States. I also believe that there may be online options available.
- Many "Scholarly Research-based Articles" about Porphyria retrieved via "EBSCOhost" academic search.
- Anatomy and Physiology Text Books
- Books about The Liver
- Books about Genetic Disorders
- The "Guided Care Nursing Program" @ (http://www.guidedcare.org/nurse.asp)
- The Farm Sanctuary @ (http://www.farmsanctuary.org)
A "Field Trip" to the New York sanctuary was an unbelievable "eye opener" for me! I was so overcome with the reality of our "real world" that I had to leave the building weeping, during the initial presentation...I wept without control at the animal cruelty and at my own personal naivety related to my unquestioned belief in: an invested government "focused on" the best interest of the people it serves. Soon after this experience I listened to Michael Pollan's book "The Omnivore's Dilemma: A Natural History of Four Meals" which served to reinforce my Farm Sanctuary "Awakening".
- Multiple Chemical Sensitivity- web search/ research
- Herbert Bonkovsky, MD @ (http://www.porphyriafoundation.com/about-the-apf/scientific-advisory-board/dr-herbert-bonkovsky)
- Karl E. Anderson, M.D., F.A.P.C. @ (http://www.porphyriafoundation.com/about-the-apf/scientific-advisory-board/dr-karl-anderson)
- The American Porphyria Foundation (APF) @ (http://www.porphyriafoundation.com/about-the-apf)
- The European Porphyria Network @ (http://www.porphyria-europe.org/)
- The British Porphyria Association (BPA) @ (http://www.porphyria.org.uk)
There is a list of Porphyria Associations all over the world, printable from this website
- Books and Articles on, "Half Acre Hobby Farming" & "Sustainable Living"
- Information from varied media sources on keeping "Back Yard Laying Hens" and most recently "Nigerian Dwarf Dairy Goats"
- The Christian Bible
I began reading my Bible last year about the same time I started this Blog/Book. My intent is to read the Bible like a storybook, cover to cover. At present I remain about one-third of the way through. For such a widely referenced, well-known book, I am sad to admit it is my first time reading it cover to cover.
Just choose a web browser and type in "____ blog".
- Reading Published Memoirs: examining how others, "tell their story" in memoir format... gaining insight regarding how various chronic health situations change people's lives.
Just go to the local public library and type in "memoir" as the key look-up word.
- The Magazine "Life Extension" provides very in-depth information about the latest integrated medical research findings around the world... they do "push" their vitamin/other supplements.
- "Advance Magazine for Speech-Language Pathologists & Audiologists", vol.18, NO.44, November 3,2008 had an excellent article (pg 7,8,9 & 34) "The Narrative Self Restoring Patient Identity in Neurogenic Disorders" written by Jason Mosheim (www.advanceweb.com/speech).
For me the article validated how I feel alienated about interacting with other people at times. Sometimes communicating is extremely difficult during an active AIP phase. This article discusses this issue in relation to several neurogenic disorders and offers ideas on how to improve the situation.
This article references a book that I have not yet read, but plan to. The book is called, "Neurogenic Communication Disorders: Life Stories and the Narrative Self" written by Shadden, B., Hagstrom, F., Koski, P. (2008)
For more information contact: Barbara Shadden, PhD, bshadde@uark.edu
- The Book, "PORPHYRIA THE UNKNOWN DISEASE" written by Diana Deats-O'Reilly
This book provides a good basic overview about what Porphyria is. It also presents several patient case studies to demonstrate what it is like to experience active episodes of Porphyria. I found this book to be an excellent springboard for researching AIP prior to my official DNA diagnosis.
- The Book, "Porphyria A Lyon's Share of Trouble" written by: Desiree Lyon Howe
Ms. Howe's book gives a personal account of her life with AIP. She is inspirational in demonstrating determination to assist others with Porphyria. She is one of the initial founders of the American Porphyria Association (APF). The APF is a significant resource for information, assistance and support for those with Porphyria.
- "UNSTUCK Your Guide to the Seven-Stage Journey Out of Depression" by: James S. Gordon, MD
This book gives great natural interventions to help combat the symptoms of depression that all people with AIP are prone to.
- "Healing the Planet ONE PATIENT AT A TIME... A Primer in Environmental Medicine" by: Jozef J. Krop, MD, FAAEM
This is one of my favorite books. I learned so much about the human: environmental interaction and how one impacts the other. So very many helpful insights...I think I will sit and read it again!
- "The NEW GLUCOSE Revolution Low GI Gluten-Free Eating Made Easy... The Essential Guide to the Glycemic Index and Gluten-Free Living" by: Dr.Jennie Brand-Miller, Kate Marsh and Philippa Sandall
Long term hypovitaminosis (low blood levels of essential vitamins) was one outcome of my gastrointestinal vitamin absorption dysfunction. After reading this book I became better at identifying long-acting carbohydrate choices that are gluten-free. After trying a gluten-free/ bovine-dairy-free diet for several months my vitamin levels are now within normal limits (without supplements) among other resolved issues. This book is packed with excellent health information!
- "Notes on Nursing What It Is, And What It Is Not... Florence Nightengale with an introduction by Ramona Salotti"
This book represents the foundation of my beliefs in nursing as a career/ calling.
- "Animal, Vegetable, Miracle... A Year of Food Life", by: Barbara Kingsolver with Steven L.Hopp and Camille Kingsolver
A New York Times Bestseller! A city family goes rural and learns to live off the land (literally) and appreciate a "simpler" way of life.
- "Health Promotion Strategies through the Life Span", by: Ruth Beckmann Murray and Judith Proctor Zentner.
The title says it all. A great resource book for positive health maintenance strategies.
- "Integrative Health Promotion... Conceptual Bases For Nursing Practice", by: Susan Kun Leddy
The title says it all. A great resource book for positive health maintenance strategies.
- University of Iowa College of Nursing Online Human Genetics and Genomics Courses.
- The Genetics Education Program for Nurses (GEPN) at Cincinnati Children's Hospital Medical Center... Web-Based Genetics Institute... and other online programs.
- Genetic Nursing Credentialing Commission (GNCC): web search/ information
- Certified Nurse Life Care Planner Certification Board: web search/ research
- Epigenetics web search/ research... how environmental influences effect gene expression
- Porphyria Nurse Care Coordination... web search/ research
- Some Informational Web Sites:
ehsc.science.oregonstate.edu
nursece.com
geneticalliance.org
cdc.gov
doesitruninthefamily.org
http://www.healthyhomestraining.org
- Yoga Nursing
- Digital Health Records/ Health Information Systems: web search/ research
- NeuroSensory Dysfunction/Impairment... also known as Sensory Processing Disorder: web search/ research
- The "Yacker Tracker Deluxe" sound monitor related to noise level control
- The Surround Air XJ-3800 Intelli-Pro Air Purifier: seven filters one machine (a HEPA filter, an activated carbon filter, an ionizer, a photocatalytic (TiO2) filter, a germicidal UV lamp, a washable pre-filter, and an electrostatic dust collector)
- 5 Stage Reverse Osmosis Water Filter System With Storage Tank
- Many books and publications by Dr. Andrew Weil
- "Environmental Medicine" web search/ research
- "Environmental Health Nursing" web search/ research
- "American Holistic Nurses' Association Guide to Common Chronic Conditions: Self-Care Options to Complement Your Doctor's Advice" by: Carolyn Chambers Clark
- "The Omnivore's Dilemma: A Natural History of Four Meals" by: Michael Pollan
An excellent book about the food we eat...its quality and content, where it comes from, how government regulates food and marketing nuances. I used the audio book format over a very long drive.
- "In Defense of Food: An Eater's Manifesto" by: Michael Pollan
This book seemed to be a continuation of his first book, but still good information.
- "The Maker's Diet" by Jordan Rubin
The author of this book tells his story of terrible illness only to become well by following dietary/ lifestyle guidelines outlined in the Bible.
- Relaxation and Meditation... web search/ research
- Rare Disease Advocacy Research Education... Rare Disease Network
- "The Comfort of Home... A Complete Guide for Caregivers" by: Maria M. Meyer with Paula Derr, RN
- The Chronic Fatigue Immune Deficiency Syndrome Association of America
- Stanford School of Medicine "Chronic Disease Self Management Program"
(http://patienteducation.stanford.edu/programs/cdsmp.html)
This is a wonderful program offered via many "Area Agencies on Aging" throughout the United States. I also believe that there may be online options available.
- Many "Scholarly Research-based Articles" about Porphyria retrieved via "EBSCOhost" academic search.
- Anatomy and Physiology Text Books
- Books about The Liver
- Books about Genetic Disorders
- The "Guided Care Nursing Program" @ (http://www.guidedcare.org/nurse.asp)
- The Farm Sanctuary @ (http://www.farmsanctuary.org)
A "Field Trip" to the New York sanctuary was an unbelievable "eye opener" for me! I was so overcome with the reality of our "real world" that I had to leave the building weeping, during the initial presentation...I wept without control at the animal cruelty and at my own personal naivety related to my unquestioned belief in: an invested government "focused on" the best interest of the people it serves. Soon after this experience I listened to Michael Pollan's book "The Omnivore's Dilemma: A Natural History of Four Meals" which served to reinforce my Farm Sanctuary "Awakening".
- Multiple Chemical Sensitivity- web search/ research
- Herbert Bonkovsky, MD @ (http://www.porphyriafoundation.com/about-the-apf/scientific-advisory-board/dr-herbert-bonkovsky)
- Karl E. Anderson, M.D., F.A.P.C. @ (http://www.porphyriafoundation.com/about-the-apf/scientific-advisory-board/dr-karl-anderson)
- The American Porphyria Foundation (APF) @ (http://www.porphyriafoundation.com/about-the-apf)
- The European Porphyria Network @ (http://www.porphyria-europe.org/)
- The British Porphyria Association (BPA) @ (http://www.porphyria.org.uk)
There is a list of Porphyria Associations all over the world, printable from this website
- Books and Articles on, "Half Acre Hobby Farming" & "Sustainable Living"
- Information from varied media sources on keeping "Back Yard Laying Hens" and most recently "Nigerian Dwarf Dairy Goats"
- The Christian Bible
I began reading my Bible last year about the same time I started this Blog/Book. My intent is to read the Bible like a storybook, cover to cover. At present I remain about one-third of the way through. For such a widely referenced, well-known book, I am sad to admit it is my first time reading it cover to cover.
He Laughed
Having been on a "Medical Leave of Absence" from work for several weeks now, my husband asks..."what will you do if you aren't ever able to return to work"? I responded, "I will apply for permanent Social Security Disability and Medicare Supplement to help with our finances". As for life in general... "on my 'good' days I will finish my book, edit it and work on publishing it... then I will put together my next book on 'International Adoption & Trying to Heal RAD'... that is of course in addition to all of my domestic wife and motherly responsibilities". He responded with laughter... I was hurt and confused. "How should I interpret your laughter" I asked. "Are you mocking me... telling me you think of my aspiration as a joke... or maybe that you believe I lack the talent for the job".
His rationale for laughter:
"I believe that you have the capacity to write, and write well. I have known many people who aspire to write a book... I have known no one who has completed the job and become famous". "How are you different"?
How am I different?
I have no aspiration to "become famous" or make tons of money. My motivation is a drive to share information about what it is like to be a Registered Nurse who lives with a rare genetically inherited disease, Acute Intermittent Porphyria (AIP). My audience is most likely limited to people who have the disease, people who have loved ones with the disease and medical personnel who want more information about AIP. The obvious lack of support shown by my spouse this day served to "fuel my fire" even more to "make this book happen".
As my pre-set time frame of one year (9/17/2010 - 9/17/2011) is quickly ticking to an end, I struggle to include all of the elements that I want and need to share. I am hoping that during my "editing phase" (post completion date) I can identify the pieces I have neglected and modify the final product to include a comprehensive presentation of real-life information.
It has been even more difficult to write lately, as my disease has been very active and I struggle to, "think straight". Writing in small segments, when my environment is well controlled is ideal yet rare to come by.
His rationale for laughter:
"I believe that you have the capacity to write, and write well. I have known many people who aspire to write a book... I have known no one who has completed the job and become famous". "How are you different"?
How am I different?
I have no aspiration to "become famous" or make tons of money. My motivation is a drive to share information about what it is like to be a Registered Nurse who lives with a rare genetically inherited disease, Acute Intermittent Porphyria (AIP). My audience is most likely limited to people who have the disease, people who have loved ones with the disease and medical personnel who want more information about AIP. The obvious lack of support shown by my spouse this day served to "fuel my fire" even more to "make this book happen".
As my pre-set time frame of one year (9/17/2010 - 9/17/2011) is quickly ticking to an end, I struggle to include all of the elements that I want and need to share. I am hoping that during my "editing phase" (post completion date) I can identify the pieces I have neglected and modify the final product to include a comprehensive presentation of real-life information.
It has been even more difficult to write lately, as my disease has been very active and I struggle to, "think straight". Writing in small segments, when my environment is well controlled is ideal yet rare to come by.
Friday, August 26, 2011
Wine with Dinner
I had some delicious wine with dinner tonight. It is my husband's birthday. My AIP very rarely can deal with any alcohol at all anymore. It really does seem to be both an age, and a life-time of accumulated exposures to triggers situation. In my late teens, twenties and early through mid thirties I was able to tolerate ocassional alcohol consumption the same as any other regular person... not so today! One glass and it's on! My switch is flipped... I cannot urinate... I cannot sleep (it is 1:20am)... I am irritable and restless... "It is what it is"... I made a poor choice joining my husband in having that glass of wine with dinner! Hopefully things will slowly calm and pass...I will be extremely "kind" to my AIP tomorrow...carbohydrates, lots of rest, and if possible, a low stimuli envronment.
This week has been SEVERELY stressful and my AIP has been down right evil to me. My husband (a teacher) returned to work last Monday and I have been home alone doing my best to take care of our twin 8yr old boys with significant behavioral issues (more about that in my next book). Life goes on in spite of AIP... and I truly prefer a life with my family, than a life alone without them. I continue to do my best to make it work.
This week has been SEVERELY stressful and my AIP has been down right evil to me. My husband (a teacher) returned to work last Monday and I have been home alone doing my best to take care of our twin 8yr old boys with significant behavioral issues (more about that in my next book). Life goes on in spite of AIP... and I truly prefer a life with my family, than a life alone without them. I continue to do my best to make it work.
Saturday, August 20, 2011
Scary Places Without Support
As a nurse and a caregiver I have experienced the effect of chronic disease consuming an individual's personality and social conversation... I do not wish to be that type of person. I want people to enjoy my presence not be irritated by it. I choose to stay in "controlled environments" whenever I can without saying a word. We recently rented a Lake House for 2 weeks on either side of my daughter's wedding. I spent most of my time inside the Lake House with a cool drink and a big comfortable chair while most everyone else sped around on water crafts, jumped off the dock and played in the water. My husband has brought up the point several times since that "he didn't think I had a good time"... "You hardly left the house". Oh, on the contrary my dear... I loved every minute of quiet, peaceful conversation, beautiful views of both nature and of my family having fun!Outside the humidity, temperature, biting insects, commotion and noise was out of control! Inside my environment (and new found Magnum Ice Cream Bars) was perfect for me!
I try not to verbalize my chronic state of AIP related aches, pains and psychological challenges on a regular basis... it sucks the life out of my companions and it negatively effects me. That said... sometimes... many times I feel so alone in the world... other people who don't have AIP don't understand the nuances of the illness. I have family members with AIP but one is young and only has limited insight into the type of support I seek. I want to talk about how it has effected my life and see if it has done the same to theirs... it sounds so very selfish... but it is not from that part of my heart... I just don't want to feel alone with AIP... it scares me... sometimes I feel like it takes me "down a road" that I may not be able to find my way back to normal... that scares me deeply.
But my siblings with the disease act as if it doesn't exist. I truly am glad that their AIP has remained latent enough to ignore.
The on-line support group I belonged to just closed. The leader's wife had AIP and died last year... he needed to move on to other things.
The "Virtual Group with Video Chat" that New York Mount Sinai is setting up is still in the works.
Some days I feel like an alien... no one around like me.
I was given the name and contact information of a woman with AIP who lives in my state... maybe I will call her...
I try not to verbalize my chronic state of AIP related aches, pains and psychological challenges on a regular basis... it sucks the life out of my companions and it negatively effects me. That said... sometimes... many times I feel so alone in the world... other people who don't have AIP don't understand the nuances of the illness. I have family members with AIP but one is young and only has limited insight into the type of support I seek. I want to talk about how it has effected my life and see if it has done the same to theirs... it sounds so very selfish... but it is not from that part of my heart... I just don't want to feel alone with AIP... it scares me... sometimes I feel like it takes me "down a road" that I may not be able to find my way back to normal... that scares me deeply.
But my siblings with the disease act as if it doesn't exist. I truly am glad that their AIP has remained latent enough to ignore.
The on-line support group I belonged to just closed. The leader's wife had AIP and died last year... he needed to move on to other things.
The "Virtual Group with Video Chat" that New York Mount Sinai is setting up is still in the works.
Some days I feel like an alien... no one around like me.
I was given the name and contact information of a woman with AIP who lives in my state... maybe I will call her...
New Medications
So a bit earlier I discussed how I agreed to begin a regime involving daily medication... I was definitely a must do situation!
The first night I took the Neurontin and the Xanax ER I was able to sleep ALL NIGHT!
It was the best night sleep that I had in years! No lie!
For the first week the Neurontin was at bed only then starting week 2 I was to increase the dose to every 12 hours (2x per day). It has been several weeks now, and believe it or not I actually feel very positive about taking my new medications. The effects last about 8 or 9 hours, so there is a little gap of increased issues, but I feel at least 50% better than before medication.
The medications seem to provide a "buffer" between my neurosensory system and the world (both stress and environmental triggers). As the weeks go on, insomnia, pain and emotional/psychological instability still escalate in parallel to the stress of my home life.
My home life can really "blow you over"... I deal with it as best I can... as anyone would. What are my choices??? Live as a hermit, a recluse, in the mountain forests of my childhood... rubbish... some days I can hardly walk to the bathroom! Besides... could you imagine the guilt and enormous sense of loneliness???
Forget it! My husband, my children, my friends, associates and community members are stuck with my presence... although I do consider the benefits of solitude, peace and serenity that eloping with AIP from human interaction... "Utopian Seclusion in Nature"...
Even "Good" stress gets to me... oh how I struggled to appear "pulled together" and "June Cleaver-ish" for my daughter's recent wedding day! My younger daughter has AIP as well and found her bridesmaid role a challenge in the midst of managing her eruption of ever-irritating AIP symptoms.
One day I forgot whether or not I had taken my medication... I was afraid to take it and overdose... so I didn't take it (I now have a pill box). By 1pm I was absolutely certain that I had not taken the morning medication! My nerves were jumpy at any little thing... my legs (especially the right shin) were radiating with pain... my emotions were up...down... all over! It was a terrible day! I took my night time medications at 6pm and could not go to sleep until about 3am!! Awful!!! The next day remained a challenge but with each day things have settled a bit more.
My very best days "health/ wellness-wise" are the days I stay at home in an environmentally controlled atmosphere (children outside in pool or playing...until school starts in a few weeks!). Stress is low, the temperature is comfortable, no scents, low sensory stimulation, and daily afternoon naps! I have even been able to return to stretching with the yoga ball and walking for 30 minutes on my elliptical trainer a couple times a week.
I find the more tired out I get through the day the less my legs work and the less I am able to understand what people say or do. I appear drunken when I walk and my brain just stops working... I can't even write... until I take a nap (usually about 2hours, 2pm to 4pm). When I wake up I feel much better and am able to continue with my day until about 10pm, when I go to bed for the night (up again at 9am).
I have a follow-up visit with my Primary Doctor in a few weeks... we will see what she thinks...
The first night I took the Neurontin and the Xanax ER I was able to sleep ALL NIGHT!
It was the best night sleep that I had in years! No lie!
For the first week the Neurontin was at bed only then starting week 2 I was to increase the dose to every 12 hours (2x per day). It has been several weeks now, and believe it or not I actually feel very positive about taking my new medications. The effects last about 8 or 9 hours, so there is a little gap of increased issues, but I feel at least 50% better than before medication.
The medications seem to provide a "buffer" between my neurosensory system and the world (both stress and environmental triggers). As the weeks go on, insomnia, pain and emotional/psychological instability still escalate in parallel to the stress of my home life.
My home life can really "blow you over"... I deal with it as best I can... as anyone would. What are my choices??? Live as a hermit, a recluse, in the mountain forests of my childhood... rubbish... some days I can hardly walk to the bathroom! Besides... could you imagine the guilt and enormous sense of loneliness???
Forget it! My husband, my children, my friends, associates and community members are stuck with my presence... although I do consider the benefits of solitude, peace and serenity that eloping with AIP from human interaction... "Utopian Seclusion in Nature"...
Even "Good" stress gets to me... oh how I struggled to appear "pulled together" and "June Cleaver-ish" for my daughter's recent wedding day! My younger daughter has AIP as well and found her bridesmaid role a challenge in the midst of managing her eruption of ever-irritating AIP symptoms.
One day I forgot whether or not I had taken my medication... I was afraid to take it and overdose... so I didn't take it (I now have a pill box). By 1pm I was absolutely certain that I had not taken the morning medication! My nerves were jumpy at any little thing... my legs (especially the right shin) were radiating with pain... my emotions were up...down... all over! It was a terrible day! I took my night time medications at 6pm and could not go to sleep until about 3am!! Awful!!! The next day remained a challenge but with each day things have settled a bit more.
My very best days "health/ wellness-wise" are the days I stay at home in an environmentally controlled atmosphere (children outside in pool or playing...until school starts in a few weeks!). Stress is low, the temperature is comfortable, no scents, low sensory stimulation, and daily afternoon naps! I have even been able to return to stretching with the yoga ball and walking for 30 minutes on my elliptical trainer a couple times a week.
I find the more tired out I get through the day the less my legs work and the less I am able to understand what people say or do. I appear drunken when I walk and my brain just stops working... I can't even write... until I take a nap (usually about 2hours, 2pm to 4pm). When I wake up I feel much better and am able to continue with my day until about 10pm, when I go to bed for the night (up again at 9am).
I have a follow-up visit with my Primary Doctor in a few weeks... we will see what she thinks...
A Long-Time Friend
I saw a long-time friend who has had a difficult life the other day...
As we "caught-up" in the post office parking lot... he shared his current situational status with me...
I need to remember the advice I gave him that day, and apply it to my own life EVERY DAY!!
"I don't believe it is what you do for a living that makes the biggest difference in life... it's how you choose to live your life that really matters!"
What do people see when they think of me?
Even with my custome health struggles, am I a "model citizen"... do I conduct myself in a positive exemplary way? Do I complain too much? Am I kind, thoughtful and morally just????
As we "caught-up" in the post office parking lot... he shared his current situational status with me...
I need to remember the advice I gave him that day, and apply it to my own life EVERY DAY!!
"I don't believe it is what you do for a living that makes the biggest difference in life... it's how you choose to live your life that really matters!"
What do people see when they think of me?
Even with my custome health struggles, am I a "model citizen"... do I conduct myself in a positive exemplary way? Do I complain too much? Am I kind, thoughtful and morally just????
If Not A Nurse...Then What???
As I left my doctor's visit it went through my brain...
What if I am unable to continue as a Nurse???
What if I need to consider permanent disability?
I am definitely unstable, unreliable and my illness is easily triggered!
I have spent my entire life setting nursing career goals!
I spent some time mourning the potential loss of continuing an active nursing career.
I spent more time crying and trying to figure out where I go from her?
Who am I?
What makes me...well what makes me...me??
Granted my emotional and psychiatric states were pretty unstable for a while... but these thoughts stayed on my mind even after the new medicine "kicked in".
Staying home on Social Security Disability, in my mind was equal to my career dying.
Being a nurse allowed me to focus on the needs of others...which took the focus off me.
Being a nurse allowed me to feel like I make a difference in the world.
How will I make a difference in the world now?? Struggling some days, just to make it through the day???
Then I remember... "God is in my heart" even when I am absolutely miserable!! My Life Has A Purpose... and it is NOT always about me. I am learning to "Let Go"... I am learning to "Let Life Just Happen"... I am learning how to prioritize "life's really important objectives"... I am learning to apply my nursing experience, knowledge, skills and abilities toward other life activities (writing) and aspects (family)... I am learning that I can still make a difference and direction will come when I stop fighting against the current... accepting and loving myself as I am... where I am.
What if I am unable to continue as a Nurse???
What if I need to consider permanent disability?
I am definitely unstable, unreliable and my illness is easily triggered!
I have spent my entire life setting nursing career goals!
I spent some time mourning the potential loss of continuing an active nursing career.
I spent more time crying and trying to figure out where I go from her?
Who am I?
What makes me...well what makes me...me??
Granted my emotional and psychiatric states were pretty unstable for a while... but these thoughts stayed on my mind even after the new medicine "kicked in".
Staying home on Social Security Disability, in my mind was equal to my career dying.
Being a nurse allowed me to focus on the needs of others...which took the focus off me.
Being a nurse allowed me to feel like I make a difference in the world.
How will I make a difference in the world now?? Struggling some days, just to make it through the day???
Then I remember... "God is in my heart" even when I am absolutely miserable!! My Life Has A Purpose... and it is NOT always about me. I am learning to "Let Go"... I am learning to "Let Life Just Happen"... I am learning how to prioritize "life's really important objectives"... I am learning to apply my nursing experience, knowledge, skills and abilities toward other life activities (writing) and aspects (family)... I am learning that I can still make a difference and direction will come when I stop fighting against the current... accepting and loving myself as I am... where I am.
A Visit to my Primary Doctor
My life has been very different since my most recent "Acute" Porphyria episode began... my body's response to in-hospital treatment did not follow the expected "bell curve" and the way in which I interface with the world is now significantly changed. Just a short time ago I was dreaming up ideas of furthering my nursing career. I considered a Doctoral bridge program that when completed would allow me to practice as a Psychiatric Nurse Practitioner and Behavioral Health Clinical Specialist. I thought I would be able to help people better manage their chronic health situations... providing them the support, expert guidance and professional collaboration that I wish I had available to me right now.
Today my reality is quite different than it was the day I wrote about becoming that person... my AIP has contributed to an internal state of constant "dis" "ease"... This past 12 months of writing in a "nut shell"... when my AIP is quiet... I want to do it all! I enjoy living life passionately in forward motion... going...doing...seeing...smelling...touching...experiencing it all! I feel as if I have been let out of a cage... I crave "real" living... being the "real" me!
Then I do too much or some life event triggers another round of increased illness.
It is extremely difficult to ride this cyclical, whirling dervish, called, "life with AIP" and not want to give up hope. Depression, anxiety and suicide statistics are higher for us with AIP... I have no idea what the biochemical contribution is... but heck just read and listen wouldn't anyone have issue with this un-chosen lifestyle???
I went to see my Primary Doctor a few weeks ago because I continued to have a lot of neurosensory, cognitive/psychiatric/emotional, insomnia, and pain. We talked about my medical situation as she evaluated me for over an hour! One thing she said to me... well it was more of a question... "how is your spiritual life??". How is my spiritual life... hmmm... actually my spiritual life is the only part of me that feels Well! Without the belief that God is with me in my heart... I would have succumbed... succumbed to it all, a very long time ago. I used to feel as if I were being punished... and that is why I would be made to feel so miserable... that feeling is not a useful one and only serves to make matters worse... instead I now try to tell myself that God has a purpose for my "life's journey" and it is not always about me! I wish I never came to know the awful nuances, the pain, the disruption and the hopeless loneliness of societal ignorance related to active Acute Intermittent Porphyria (AIP)... but I have become intimately aware of all that is AIP... and I am forever grateful that my "Spiritual Life" is healthy!
My Primary Care Physician (PCP) is like none other I have ever known... each visit is at minimum one hour... evaluating and collaborating... investing in trying to help my mind, my body and my soul. The time has come for me to make some big changes in accepting and taking care of my mind, body and soul. She assisted in setting up a Medical Leave of Absence from my job. I agreed to begin taking medication on a regular and consistent basis. We agreed that these steps are necessary at this point in time. I began taking Neurontin 300mg 2x daily, and Xanax XR 1mg 2x daily. Taking daily medication is a big step for me... but without some help I felt as if I were headed back to the hospital... either 2 South for Hematin... or 3 South for psychiatric stabilization.
Today my reality is quite different than it was the day I wrote about becoming that person... my AIP has contributed to an internal state of constant "dis" "ease"... This past 12 months of writing in a "nut shell"... when my AIP is quiet... I want to do it all! I enjoy living life passionately in forward motion... going...doing...seeing...smelling...touching...experiencing it all! I feel as if I have been let out of a cage... I crave "real" living... being the "real" me!
Then I do too much or some life event triggers another round of increased illness.
It is extremely difficult to ride this cyclical, whirling dervish, called, "life with AIP" and not want to give up hope. Depression, anxiety and suicide statistics are higher for us with AIP... I have no idea what the biochemical contribution is... but heck just read and listen wouldn't anyone have issue with this un-chosen lifestyle???
I went to see my Primary Doctor a few weeks ago because I continued to have a lot of neurosensory, cognitive/psychiatric/emotional, insomnia, and pain. We talked about my medical situation as she evaluated me for over an hour! One thing she said to me... well it was more of a question... "how is your spiritual life??". How is my spiritual life... hmmm... actually my spiritual life is the only part of me that feels Well! Without the belief that God is with me in my heart... I would have succumbed... succumbed to it all, a very long time ago. I used to feel as if I were being punished... and that is why I would be made to feel so miserable... that feeling is not a useful one and only serves to make matters worse... instead I now try to tell myself that God has a purpose for my "life's journey" and it is not always about me! I wish I never came to know the awful nuances, the pain, the disruption and the hopeless loneliness of societal ignorance related to active Acute Intermittent Porphyria (AIP)... but I have become intimately aware of all that is AIP... and I am forever grateful that my "Spiritual Life" is healthy!
My Primary Care Physician (PCP) is like none other I have ever known... each visit is at minimum one hour... evaluating and collaborating... investing in trying to help my mind, my body and my soul. The time has come for me to make some big changes in accepting and taking care of my mind, body and soul. She assisted in setting up a Medical Leave of Absence from my job. I agreed to begin taking medication on a regular and consistent basis. We agreed that these steps are necessary at this point in time. I began taking Neurontin 300mg 2x daily, and Xanax XR 1mg 2x daily. Taking daily medication is a big step for me... but without some help I felt as if I were headed back to the hospital... either 2 South for Hematin... or 3 South for psychiatric stabilization.
Saturday, July 16, 2011
Online Porphyria Support Group... Today's Post
Thank You Lynda & Eileen for sharing your Porphyria experiences!
Your validation has come just when I needed it the most! I have been struggling with my chronic AIP issues for some time now... amen to the fact that people and stress escalate the neurosensory overload! I am at a very difficult point at present...my nursing career has been a huge part of my life... like sand through my fingers I am losing my career... beginning the disability process... it is extremely hard for many reasons... I try with every bit of energy that I have, but I just can't do it anymore... my AIP is triggered easier and easier these days... smells, lighting, motion, the volume, pitch and speed of other people's talking... my body feels as if it is made of lead... I have more and more trouble focusing... remembering details... making connections... the pain in my legs and the random "bee-like stings" is awful (as you know)... I am getting more and more anxious when I am planning to leave home... not because I have a phobia... I have always been social and fun-loving... but because I cannot control the environment and my symptoms will probably worsen no matter how careful I am. It is like living in a bad dream. I try every day to keep a positive mind-set... to look for the little things that make life special... some days are a terrific challenge. I have a husband and twin 8 year old sons... all with ADHD... I am extremely invested in eating right to optimize my health (Gluten Free, Soy Free, Bovine Dairy Free, Organic, Non-Goitergenic, AIP-friendly)... I sauna...I yoga... I use my elliptical exerciser daily when able... I read and research to optimize my wellness... I joined the AIP Clinical Study... I try to gently educate my health care providers when needed... I have had dextrose IV treatments... I have had Panhematin treatments... they usually help with the acute issues but have no lasting effect. To the world outside of my body I look about 20 pounds overweight, tired with dark under eye circles... but otherwise normal... normal... the same as everyone else... they don't understand... they can be condescending and both intentionally and unintentionally hurtful... I appreciate that I am "Preaching to the Choir"... It is so very comforting to know that there are other people who understand what I am talking about... other people who can relate... other people like me. Thank You so very much for being there, for sharing your experiences... and for listening.
Best Wishes~
Tracie
Your validation has come just when I needed it the most! I have been struggling with my chronic AIP issues for some time now... amen to the fact that people and stress escalate the neurosensory overload! I am at a very difficult point at present...my nursing career has been a huge part of my life... like sand through my fingers I am losing my career... beginning the disability process... it is extremely hard for many reasons... I try with every bit of energy that I have, but I just can't do it anymore... my AIP is triggered easier and easier these days... smells, lighting, motion, the volume, pitch and speed of other people's talking... my body feels as if it is made of lead... I have more and more trouble focusing... remembering details... making connections... the pain in my legs and the random "bee-like stings" is awful (as you know)... I am getting more and more anxious when I am planning to leave home... not because I have a phobia... I have always been social and fun-loving... but because I cannot control the environment and my symptoms will probably worsen no matter how careful I am. It is like living in a bad dream. I try every day to keep a positive mind-set... to look for the little things that make life special... some days are a terrific challenge. I have a husband and twin 8 year old sons... all with ADHD... I am extremely invested in eating right to optimize my health (Gluten Free, Soy Free, Bovine Dairy Free, Organic, Non-Goitergenic, AIP-friendly)... I sauna...I yoga... I use my elliptical exerciser daily when able... I read and research to optimize my wellness... I joined the AIP Clinical Study... I try to gently educate my health care providers when needed... I have had dextrose IV treatments... I have had Panhematin treatments... they usually help with the acute issues but have no lasting effect. To the world outside of my body I look about 20 pounds overweight, tired with dark under eye circles... but otherwise normal... normal... the same as everyone else... they don't understand... they can be condescending and both intentionally and unintentionally hurtful... I appreciate that I am "Preaching to the Choir"... It is so very comforting to know that there are other people who understand what I am talking about... other people who can relate... other people like me. Thank You so very much for being there, for sharing your experiences... and for listening.
Best Wishes~
Tracie
Wednesday, July 6, 2011
I Pray That God is With Me
Neuropathies (central, autonomic and peripheral): headache, bilateral leg pain (bones/joints), heels like pins
GI: burning nausea
GU: dysuria
Muscular: weak, heavy, poor endurance, fatigued
Psychiatric: cognitive slowing, confusion, memory lapses, restless, irritable, emotionally labile,
Sensory: neuro-sensory hypersensitivity (sound, light, motion, touch), ringing in ears
Pain/Comfort: leg bones radiate with pain, headache through eyes to back of skull, insomnia, restless/ cannot find a comfortable position
Sleep/Rest: see Pain/Comfort
Self-Propelled Disease Management:
Ugh I am so incredibly frustrated! For the life of me I cannot figure out where the "shut off" valve is to my Porphyria... Since my recent hospitalization, complete with IV Dextrose & Four Panhematin Treatments... I came home and over the following week seemed to gradually return to my normal baseline self... I went back to work last Thursday June 30th and my family went out of town for the holiday weekend... the house was calm and quiet...work was fine... it was a bit of a challenge to make it through all 8 hours of the work day with low endurance... but it was ok...then Friday came and went without too much issue (still a lot of low endurance/ fatigue)... I was off work and home Saturday and Sunday... I knew I should take advantage of the quiet time and rest... but when I looked around the house... well it hadn't had a good cleaning in weeks due to my health... I felt disgusted by the scene and began scrubbing, cleaning, laundering...etc. when I finished everything it was Sunday afternoon! The house looked great but it came with a price... I started feeling a "little cloudy" mentally... I forgot a teapot on the stove and burned out all of the water... I went outside and left the kitchen sink running... when I came back in there was water everywhere!!! I went to bed early Sunday night, but couldn't fall asleep until after midnight with Ativan, Naproxen and Magnesium! Monday July 4th I was late to work...still not feeling "myself" and worked till 2pm... I came home and stayed in for the night... Tuesday I worked 8am to 4:30pm, came home, crawled to the couch and put my feet up... 45 minutes later my family returned home from their trip. It was good to see them, the energy they brought through the front door was bittersweet... I truly had missed them all... but as the night progressed so did the energy, volume and negativity. I could feel my nervous system struggling, firing off like a fireworks display... I gently reminded them that these behavior choices are unhealthy for everyone... they agreed for the "millionth" time and I went to bed at 10pm. I struggled at work today, my co worker's perfume put me over the edge and I finally left for home at about 10:30am... A quiet, dark, cool place to rest works best to counteract my hypersensitive nervous system... a warm, weighted heating pad works best for my leg/ nausea issues. I try so hard to keep a positive outlook... I search for the "meaning"... I try to discover what I can do to change my situation... but today I feel powerless. I pray that God is with me.
Saturday, June 25, 2011
About My 5 Day Hospital Stay
This is my fourth day home from the hospital and I am still weak, "heavy" feeling and have little endurance. I am not complaining... my pain and discomfort level is at about a level 2 out of 10 which is a huge improvement!
My struggle now is re-creating a sense of stability... this episode was one of the biggest I have had. My "mental self-talk" is insecure about my abilities... and about future planning... the perpetual "rug" is apt to be pulled from beneath me again at any time... leaving me dysfunctional wherever I am... work, home, driving, traveling... it is scary.
I was told, "I waited too long before seeking medical attention"... my reply is... how do I know when to go??? Some times simple rest and carb-loading reverse the escalating symptoms of AIP... other times things cross a point and spin wildly out of all control! How do you apply logic to all of this? Not to mention...that "Resting" on too many work days will put one "Out of Work" permanently.
I was told, "It is our medical opinion that you should manage your stress more effectively to avoid AIP triggering"... I agree. How? I am an uber nutrition "Freak", I exercise daily, Sauna regularly, Vent issues, Proactively spear-head problems as they arise... seek professional and personal support for my children's on-going behavioral challenges... talk to a marriage counselor... and Pray A Lot!!!
Wrestling with a sense of hopelessness can lead to depression for me. I am trying to focus my energy on the positive attributes in life... donning negativity filters... avoiding anything and anybody that doesn't see "the glass half full".
Until my energy is re-established I find, for me, it is best to stay close to home... it requires a fair share of "negativity filtering" right here... and that is all the energy I can muster until tomorrow... then maybe I will venture out...
My struggle now is re-creating a sense of stability... this episode was one of the biggest I have had. My "mental self-talk" is insecure about my abilities... and about future planning... the perpetual "rug" is apt to be pulled from beneath me again at any time... leaving me dysfunctional wherever I am... work, home, driving, traveling... it is scary.
I was told, "I waited too long before seeking medical attention"... my reply is... how do I know when to go??? Some times simple rest and carb-loading reverse the escalating symptoms of AIP... other times things cross a point and spin wildly out of all control! How do you apply logic to all of this? Not to mention...that "Resting" on too many work days will put one "Out of Work" permanently.
I was told, "It is our medical opinion that you should manage your stress more effectively to avoid AIP triggering"... I agree. How? I am an uber nutrition "Freak", I exercise daily, Sauna regularly, Vent issues, Proactively spear-head problems as they arise... seek professional and personal support for my children's on-going behavioral challenges... talk to a marriage counselor... and Pray A Lot!!!
Wrestling with a sense of hopelessness can lead to depression for me. I am trying to focus my energy on the positive attributes in life... donning negativity filters... avoiding anything and anybody that doesn't see "the glass half full".
Until my energy is re-established I find, for me, it is best to stay close to home... it requires a fair share of "negativity filtering" right here... and that is all the energy I can muster until tomorrow... then maybe I will venture out...
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