Thursday, March 15, 2012

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 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".

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.

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