Saturday, April 29, 2017
GMOs & me
Valued article with video:
http://www.healthy-holistic-living.com/rare-footage-shows-george-bushs-1987-visit-monsanto-uttering-seven-infamous-words-change-everything.html?t=HHL
Commemorates 1980s campaign/lobbying with regard to the politics of our health. When GMOs took rise under the guise of sustainability during the Reagan admin. & my teen years.
You should develop your own opinion & we may disagree but, this is how I translate, for me personally:
Monsanto developed round up from the model of natural occurring pesticides.
Like nightshades (tomatoes, potatoes, peppers -Bell to Spicy-, & Eggplant) that naturally protect themselves from insects & predatory creatures via
GLYcoalkaloids (that will repel would-be consumers due to potentially ill affects of consumption).
While RoundUp a common weed killer GLYphosate is developed, crops that could withstand it's use had to be created as well.
--meanwhile very little if any consideration was given to the risk to human genetics.
The first DNA sequencing wasn't until the mid70s &
DNA fingerprinting wasn't even a thing in forensics until well into the 80s.--
So bringing it directly to my doorstep...
I was well into my forties before discovering I had a nightshade intolerance that have extreme effects on auto-immune conditions!!
While attempting homeopathic self treatment of nerve pain (shoulder subluxation, impingement) I realized incredible skin reaction at the site of capsaicin rubs however, I endured & continued use, as the pain from the former was preferred over the latter. In the following weeks I suffered much from dramatic skin reactions not associated with the site of application.. horribly agonising boils & eruptions.. that went unrelated.
Fast forward to being treated for what is thought to be genetically driven auto immune illnesses and making strides to be healthy when I experienced bullous pemphigoid via Eggplant.
So for me, even though practically consumed with EVERY meal, my entire life.. They are now extracted from my diet!! With the exception of those genetically modified organisms (GMOs) that are served up as a customary part of our food supply, doing God knows what to the God designed parts of us.
If I reject their biological treatments why on earth would I knowingly subject myself to their other experiments .. passed off as food!
Friday, April 28, 2017
Ebb & Flow ~ Dealing with Dercum's
It's been a long road of learning to make appropriate accommodation or concessions for myself, along the way. Sometimes it's just not possible & I struggle with wanting to be my old self.
Some of what I have experienced, signs & symptoms come and go without warning or reason persistently...
Over the years more & more have developed as the comorbidities accumulate. struggle mostly to overcome lapses in recollection as some thing's simply haven't changed, but rather ebb & flow as I seek their triggers... Like trying to find a pattern through much noise and confusion. Just par among my continuing battles.
It started with & never quit, although not constant, before 2000, with..
Sensations of random stinging as though there is a bug (sometimes includes crawling sensation).
Alternatively, it can be a sharp shocking sensation, or full on burning. May not seem like a big deal but can be bothersome, certainly distracting, & perplexing if not just outright painful.
This is how I discovered my lump(s) 'lipomas' a herald, if you will.
None of my lumps are exceptionally large. To the contrary, I would say most are rather small... My arms similar to a bean-bag that you can feel the tiny pellets below the surface. Some areas have multiple crowding everything beneath but only mildly apparent above/externally, while others started as lumps but developed over time into fibrotic pads of tissue & still other areas seem completely spared.
The largest of my lumps feels hard & rubbery to the touch, between quarter & 1/2 dollar size however, I know this to be deceiving as even the surgeon was surprised when removal of similar proved to be larger & more difficult to extract than had been anticipated.
Of course, he's also the renowned chief of surgery that insisted lipomas' aren't painful, as well. Furthermore, he was emphatic that he had removed all surrounding tissues and proudly reported the benign status (as though I cared about cancer) like it proved something.
He would look at me sideways & ask some obviously back handed questions. trying to explain seemed to make it worse; as though I was his latest hypochondriac seeking pharmaceuticals & attention.
Similar in the way my husband at the time had so many times before him... who would ridicule me with his comments of disbelief, accusation of concocting reasons to avoid 'my duties', pushing me farther than my limits physically & emotionally.
This triggered something in me. So I set about trying to prove my pain to everyone & mind you the interWebs (lol) weren't what they are today. So with the help of my GP & the enlisted librarians, lab assistants, & a collection of nurse friends and I collaborated. My husband & I ultimately divorced. The surgeon eventually had the occasion to apologize.
There is validation but mostly it's a long hard road. I wish someone was able to warn me.. Not try to consume it all at once... i found on my own It can be completely overwhelming!! I remind myself this is a marathon, not a sprint {I seriously hate running}
and, btw... If I were to be asked my advice: you cannot approach a doctor in a frantic state or with too much desperation in your eyes & you've got to be able to speak knowledgeably even if you don't completely understand their language. I found it invaluable to read, read, read & research definitions of terminology! You must be your own best advocate!!
Today some of my lumps are actually non-painful to the touch, while others are tender to even light touch... Sometimes the area changes. I'm not sure I would describe it as migratory like I might the nerve pains I experience but overtime I believe it's related to some type of congestion .. lymph, interstitial, allergy to mast activation, ischemia, ... I imagine a number of activities beneath the surface are at play.
Whatever it is, it's always something ... Or multiple something's... Some days my head is clear from headaches and my back and hip don't completely debilitate me but that might also be the same day that I'm going on 3 nights without sleep and the IBS has kicked in & what feels like carpal tunnel has set into my wrists disabusing me of even a cup of coffee. Etc.. etc.. So here I am with all these random pains & complaints. Some days I can be touched while others Absolutely not!! Literally all my fat seems to revolt against me.
It's tiring for me to deal with and I'm sure even more so for my loved ones to hear about it constantly. So I've learned to keep it mostly to myself. I don't need to validate my pain anymore, to anyone! I just need to focus on managing it & making it through tomorrow by looking for the positives & the best way to treat myself!!
Some of what I have experienced, signs & symptoms come and go without warning or reason persistently...
Over the years more & more have developed as the comorbidities accumulate. struggle mostly to overcome lapses in recollection as some thing's simply haven't changed, but rather ebb & flow as I seek their triggers... Like trying to find a pattern through much noise and confusion. Just par among my continuing battles.
It started with & never quit, although not constant, before 2000, with..
Sensations of random stinging as though there is a bug (sometimes includes crawling sensation).
Alternatively, it can be a sharp shocking sensation, or full on burning. May not seem like a big deal but can be bothersome, certainly distracting, & perplexing if not just outright painful.
This is how I discovered my lump(s) 'lipomas' a herald, if you will.
None of my lumps are exceptionally large. To the contrary, I would say most are rather small... My arms similar to a bean-bag that you can feel the tiny pellets below the surface. Some areas have multiple crowding everything beneath but only mildly apparent above/externally, while others started as lumps but developed over time into fibrotic pads of tissue & still other areas seem completely spared.
The largest of my lumps feels hard & rubbery to the touch, between quarter & 1/2 dollar size however, I know this to be deceiving as even the surgeon was surprised when removal of similar proved to be larger & more difficult to extract than had been anticipated.
Of course, he's also the renowned chief of surgery that insisted lipomas' aren't painful, as well. Furthermore, he was emphatic that he had removed all surrounding tissues and proudly reported the benign status (as though I cared about cancer) like it proved something.
He would look at me sideways & ask some obviously back handed questions. trying to explain seemed to make it worse; as though I was his latest hypochondriac seeking pharmaceuticals & attention.
Similar in the way my husband at the time had so many times before him... who would ridicule me with his comments of disbelief, accusation of concocting reasons to avoid 'my duties', pushing me farther than my limits physically & emotionally.
This triggered something in me. So I set about trying to prove my pain to everyone & mind you the interWebs (lol) weren't what they are today. So with the help of my GP & the enlisted librarians, lab assistants, & a collection of nurse friends and I collaborated. My husband & I ultimately divorced. The surgeon eventually had the occasion to apologize.
There is validation but mostly it's a long hard road. I wish someone was able to warn me.. Not try to consume it all at once... i found on my own It can be completely overwhelming!! I remind myself this is a marathon, not a sprint {I seriously hate running}
and, btw... If I were to be asked my advice: you cannot approach a doctor in a frantic state or with too much desperation in your eyes & you've got to be able to speak knowledgeably even if you don't completely understand their language. I found it invaluable to read, read, read & research definitions of terminology! You must be your own best advocate!!
Today some of my lumps are actually non-painful to the touch, while others are tender to even light touch... Sometimes the area changes. I'm not sure I would describe it as migratory like I might the nerve pains I experience but overtime I believe it's related to some type of congestion .. lymph, interstitial, allergy to mast activation, ischemia, ... I imagine a number of activities beneath the surface are at play.
Whatever it is, it's always something ... Or multiple something's... Some days my head is clear from headaches and my back and hip don't completely debilitate me but that might also be the same day that I'm going on 3 nights without sleep and the IBS has kicked in & what feels like carpal tunnel has set into my wrists disabusing me of even a cup of coffee. Etc.. etc.. So here I am with all these random pains & complaints. Some days I can be touched while others Absolutely not!! Literally all my fat seems to revolt against me.
It's tiring for me to deal with and I'm sure even more so for my loved ones to hear about it constantly. So I've learned to keep it mostly to myself. I don't need to validate my pain anymore, to anyone! I just need to focus on managing it & making it through tomorrow by looking for the positives & the best way to treat myself!!
Wednesday, April 26, 2017
Not all in my head....
So it's been about two months since I posted... Sorry for not being more predictable but, life happens...
I have started at least 5 entries since my last gap but unable to complete or tie together the ramblings & information coherently (seems to be a running theme)
Today, however, I felt compelled to vent & since that happens usually only between me and my notes I figured I would share - just incase you might be feeling the same or can relate.
Having sought treatment(s) and pain management for many years (since my teens) with regard to menses & spinal issues primarily... I began having allot of abdominal issues and apparent migraine syndrome that would frequently require emergency intervention (20s).
Suddenly faced with enormous amounts of stress (physical, emotional, & even surgical) new health complications began to emerge - mysterious signs & symptoms erupted. Partnered with my GP I began taking closer account of my health issues & seeking relief when we discovered my association with Dercum's Disease (30s).
Ultimately, the numerous referrals to specialists & surgeons, etc.. resulted in treatments that offered many pharmaceuticals but no real relief only compounding my issues with no affect or side effects.
My second divorce finalized, no insurance, and having turned 40 I sought new attainable holistically based approaches for self treatment. Over the next 5±yrs I explored my diagnosis' and educated myself as much as possible, doing what I could to manage my issues. Avoidance & distraction were my best friend's, especially in light of the emotional treatment I had suffered with my ex husband... I had learned that it didn't do any good to discuss it. My health issues were too complicated for doctor's how did I expect to have any level of understanding from others.
I started using my spoons more wisely. I had relocated, was now in a supportive relationship, and reverted to a less mentally demanding occupation since brain fog, headaches, pain, et al made it much too difficult to remain in real estate. Besides the economy had tanked... & although restaurant/food service was physically demanding I made it work... Until it didn't!
I ended up disabled by abdominal & spinal symptoms for about 4 months. I sought out emergency intervention when I got scared... I experienced incontinence (both kinds) and lots of pelvic & low back pain.
More diagnosis added to the ever growing list, including; CFS/ME, Polycystic Ovary, Barrett's Esophagus, & a bone cyst @ t12 l1.
Recommended treatment; my umpteenth referral to pain management. Which I was unable to access because of insurance limitations & financial constraints.
Fast forward to pushing 50 & my latest health crisis (precipitated by a virus - suspected DV-68) kept me house bound, if not bedridden, for 2yrs & unable to work since 2014.
Yes, fortunately or unfortunately, depending on your point of view... I again sought out medical intervention.
This time rheumatology was the focal discipline and even more diagnosis were added to the list; MCTD & uSpa were the highlights (more details @ close). I was referred to additional specialist of other disciplines, for this time even my vision & hearing was comprised, & my throat required surgery.
After months and months of what seemed to be pharmaceutical treatments thrown at a wall to see what sticks, to no avail..
Further recommended treatment included DMARDS & BIO drugs & a genetic specialist.
Again I bowed out. Opting not to pursue these class of drugs as a form of treatment. I have however further explored my lineage/pedigree of genetic links, and pursued a full exome sequencing.
I want relief ~ I don't want to be practiced on!! That's what doc's do... They 'practice' medicine. Imho
I do not recommend anyone follow in my footsteps. I have a unique set of circumstances. I frequently consider relenting but time and time again it has proven counterintuitive & financially ruining, for me. I applied for social security but unless I follow doctor's orders - I'm not entitled.
So I continue my education on me as the medical community continues to make new discoveries hoping one day the two will intersect, possibly through precision medicine, in the future.
In the meanwhile, I vent & share some of what I learn... Maybe it will help in someone else's journey ...
Here's a fantastic link that (will open in new window) gave me some validation today; https://www.healthrising.org/forums/threads/one-gene-many-disorders-genetic-finding-could-help-explain-pots-eds-ibs-fm-me-cfs-and-others.5015/
& Here's more about some of my diagnosis ;
Mixed connective tissue disease (MCTD), which was first described in 1972, is "classically" considered as an "overlap," or mix, of three specific connective-tissue diseases: systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern of illness (that is, with MCTD) have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of the three component illnesses, most commonly the scleroderma features.
{Component illnesses x3 within these brackets to follow}
¹{Systemic sclerosis (SSc) is a multisystem autoimmune disease in which there is increased fibroblast activity resulting in abnormal growth of connective tissue. This causes vascular damage and fibrosis. Fibrosis occurs in skin, the gastrointestinal (GI) tract, heart, lungs and other internal organs. Vascular manifestations include secondary Raynaud's phenomenon, ischaemia of extremities, pulmonary arterial hypertension and renal disease }
²{Polymyositis.
characterized by inflammation and degeneration of the muscles.
Dermatomyositis is polymyositis accompanied by skin inflammation.
Muscle damage may cause muscle pain and difficulty lifting the arms above the shoulders, climbing stairs, or arising from a sitting position.
The cause of polymyositis and dermatomyositis is unknown. Viruses or autoimmune reactions may play a role. Cancer may also trigger polymyositis and dermatomyositis. It is possible that an immune reaction against cancer may be directed against a substance in the muscles. The disorders tend to run in families.}
³{Systemic lupus erythematosus (SLE), also known simply as lupus, is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body. Symptoms vary between people and may be mild to severe. Common symptoms include painful and swollen joints, fever, chest pain, hair loss, mouth ulcers, swollen lymph nodes, feeling tired, and a red rash which is most commonly on the face. Often there are periods of illness, called flares, and periods of remission when there are few symptoms.}
Undifferentiated Spondyloarthropathyis a term used to describe the condition where presentation does not meet the criteria for a definitive diagnosis of ankylosing spondylitis (AS).
Ankylosing spondylitis (AS), a spondyloarthropathy, is a chronic, multisystem inflammatory disorder involving primarily the sacroiliac (SI) joints and the axial skeleton.
General symptoms of AS include the following:
Those related to inflammatory back pain - Stiffness of the spine and kyphosis resulting in a stooped posture are characteristic of advanced-stage AS.
Peripheral enthesitis [ inflammation of the entheses, the sites where tendons or ligaments insert into the bone ] and arthritis
Constitutional [.Constitutional symptoms refers to a group of symptoms that can affect many different systems of the body.
Examples include weight loss, fevers, fevers of unknown origin, hyperhidrosis, generalized hyperhidrosis, chronic pain, fatigue, dyspnea, and malaise.
Other examples include chills, night sweats, and decreased appetite.]
and organ-specific extra-articular manifestations which include the following:
Uveitis
Uveitis occurs when the middle layer of the eyeball gets inflamed (red and swollen). This layer, called the uvea, has many blood vessels that nourish the eye. Uveitis can damage vital eye tissue, leading to permanent vision loss via retinal detachment.
Cardiovascular diseases
Pulmonary disease
Renal disease
Neurologic disease
Gastrointestinal (GI) diseases
Metabolic bone disease
Inflammatory back pain - 90%
Buttock pain - 80%
Enthesitis - 85%
Peripheral arthritis - 35%
Dactylitis - 17%
& Fatigue is another common complaint, occurring in approximately 65% of patients with AS.
Increased levels of fatigue are associated with increased pain and stiffness and decreased functional capacity.
I have started at least 5 entries since my last gap but unable to complete or tie together the ramblings & information coherently (seems to be a running theme)
Today, however, I felt compelled to vent & since that happens usually only between me and my notes I figured I would share - just incase you might be feeling the same or can relate.
Having sought treatment(s) and pain management for many years (since my teens) with regard to menses & spinal issues primarily... I began having allot of abdominal issues and apparent migraine syndrome that would frequently require emergency intervention (20s).
Suddenly faced with enormous amounts of stress (physical, emotional, & even surgical) new health complications began to emerge - mysterious signs & symptoms erupted. Partnered with my GP I began taking closer account of my health issues & seeking relief when we discovered my association with Dercum's Disease (30s).
Ultimately, the numerous referrals to specialists & surgeons, etc.. resulted in treatments that offered many pharmaceuticals but no real relief only compounding my issues with no affect or side effects.
My second divorce finalized, no insurance, and having turned 40 I sought new attainable holistically based approaches for self treatment. Over the next 5±yrs I explored my diagnosis' and educated myself as much as possible, doing what I could to manage my issues. Avoidance & distraction were my best friend's, especially in light of the emotional treatment I had suffered with my ex husband... I had learned that it didn't do any good to discuss it. My health issues were too complicated for doctor's how did I expect to have any level of understanding from others.
I started using my spoons more wisely. I had relocated, was now in a supportive relationship, and reverted to a less mentally demanding occupation since brain fog, headaches, pain, et al made it much too difficult to remain in real estate. Besides the economy had tanked... & although restaurant/food service was physically demanding I made it work... Until it didn't!
I ended up disabled by abdominal & spinal symptoms for about 4 months. I sought out emergency intervention when I got scared... I experienced incontinence (both kinds) and lots of pelvic & low back pain.
More diagnosis added to the ever growing list, including; CFS/ME, Polycystic Ovary, Barrett's Esophagus, & a bone cyst @ t12 l1.
Recommended treatment; my umpteenth referral to pain management. Which I was unable to access because of insurance limitations & financial constraints.
Fast forward to pushing 50 & my latest health crisis (precipitated by a virus - suspected DV-68) kept me house bound, if not bedridden, for 2yrs & unable to work since 2014.
Yes, fortunately or unfortunately, depending on your point of view... I again sought out medical intervention.
This time rheumatology was the focal discipline and even more diagnosis were added to the list; MCTD & uSpa were the highlights (more details @ close). I was referred to additional specialist of other disciplines, for this time even my vision & hearing was comprised, & my throat required surgery.
After months and months of what seemed to be pharmaceutical treatments thrown at a wall to see what sticks, to no avail..
Further recommended treatment included DMARDS & BIO drugs & a genetic specialist.
Again I bowed out. Opting not to pursue these class of drugs as a form of treatment. I have however further explored my lineage/pedigree of genetic links, and pursued a full exome sequencing.
I want relief ~ I don't want to be practiced on!! That's what doc's do... They 'practice' medicine. Imho
I do not recommend anyone follow in my footsteps. I have a unique set of circumstances. I frequently consider relenting but time and time again it has proven counterintuitive & financially ruining, for me. I applied for social security but unless I follow doctor's orders - I'm not entitled.
So I continue my education on me as the medical community continues to make new discoveries hoping one day the two will intersect, possibly through precision medicine, in the future.
In the meanwhile, I vent & share some of what I learn... Maybe it will help in someone else's journey ...
Here's a fantastic link that (will open in new window) gave me some validation today; https://www.healthrising.org/forums/threads/one-gene-many-disorders-genetic-finding-could-help-explain-pots-eds-ibs-fm-me-cfs-and-others.5015/
& Here's more about some of my diagnosis ;
Mixed connective tissue disease (MCTD), which was first described in 1972, is "classically" considered as an "overlap," or mix, of three specific connective-tissue diseases: systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern of illness (that is, with MCTD) have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of the three component illnesses, most commonly the scleroderma features.
{Component illnesses x3 within these brackets to follow}
¹{Systemic sclerosis (SSc) is a multisystem autoimmune disease in which there is increased fibroblast activity resulting in abnormal growth of connective tissue. This causes vascular damage and fibrosis. Fibrosis occurs in skin, the gastrointestinal (GI) tract, heart, lungs and other internal organs. Vascular manifestations include secondary Raynaud's phenomenon, ischaemia of extremities, pulmonary arterial hypertension and renal disease }
²{Polymyositis.
characterized by inflammation and degeneration of the muscles.
Dermatomyositis is polymyositis accompanied by skin inflammation.
Muscle damage may cause muscle pain and difficulty lifting the arms above the shoulders, climbing stairs, or arising from a sitting position.
The cause of polymyositis and dermatomyositis is unknown. Viruses or autoimmune reactions may play a role. Cancer may also trigger polymyositis and dermatomyositis. It is possible that an immune reaction against cancer may be directed against a substance in the muscles. The disorders tend to run in families.}
³{Systemic lupus erythematosus (SLE), also known simply as lupus, is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body. Symptoms vary between people and may be mild to severe. Common symptoms include painful and swollen joints, fever, chest pain, hair loss, mouth ulcers, swollen lymph nodes, feeling tired, and a red rash which is most commonly on the face. Often there are periods of illness, called flares, and periods of remission when there are few symptoms.}
Undifferentiated Spondyloarthropathyis a term used to describe the condition where presentation does not meet the criteria for a definitive diagnosis of ankylosing spondylitis (AS).
Ankylosing spondylitis (AS), a spondyloarthropathy, is a chronic, multisystem inflammatory disorder involving primarily the sacroiliac (SI) joints and the axial skeleton.
General symptoms of AS include the following:
Those related to inflammatory back pain - Stiffness of the spine and kyphosis resulting in a stooped posture are characteristic of advanced-stage AS.
Peripheral enthesitis [ inflammation of the entheses, the sites where tendons or ligaments insert into the bone ] and arthritis
Constitutional [.Constitutional symptoms refers to a group of symptoms that can affect many different systems of the body.
Examples include weight loss, fevers, fevers of unknown origin, hyperhidrosis, generalized hyperhidrosis, chronic pain, fatigue, dyspnea, and malaise.
Other examples include chills, night sweats, and decreased appetite.]
and organ-specific extra-articular manifestations which include the following:
Uveitis
Uveitis occurs when the middle layer of the eyeball gets inflamed (red and swollen). This layer, called the uvea, has many blood vessels that nourish the eye. Uveitis can damage vital eye tissue, leading to permanent vision loss via retinal detachment.
Cardiovascular diseases
Pulmonary disease
Renal disease
Neurologic disease
Gastrointestinal (GI) diseases
Metabolic bone disease
Inflammatory back pain - 90%
Buttock pain - 80%
Enthesitis - 85%
Peripheral arthritis - 35%
Dactylitis - 17%
& Fatigue is another common complaint, occurring in approximately 65% of patients with AS.
Increased levels of fatigue are associated with increased pain and stiffness and decreased functional capacity.
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