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.
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