TMI: medical, you were warned....
I have had some people i thought knew about current conditions tell me "facts" that are not even close to whats actually going on.. so let me put this out here if you want to know:
I have a business
yes i do. people make a lot of assumptions based on the fact that i have this business.
i have cut the number of events i have gone to in half. i have also started making decisions about what events i do sell at based on number of stairs at load in, and number of people who can help me load in. if there is no help for me to load in or out, then even if i do this event i take the MINIMUM goods i can. i can load in a case of jewelry that is on wheels, so i have been focusing on jewelry rather than beads, because beads are HEAVY.
i have been unable to lift any significant amount since my car accident and neck injury 15 some years ago. that is the one where i lost almost all use of my right arm for five years. This is why my bead boxes are small, because i can barely lift one. strong healthy people i have watched carry three or four at a time! i cannot lift more than one if they are at all loaded.
wayne used to help me load and unload the car. he also used to come to some events with me. he cannot come to events anymore. he also cannot help me load or unload the car, because as many people can attest he lifts two boxes and collapses for the day.
so, i lost my "at home help" to load and unload, and my own abilities are going down fast.
i no longer sign up for new outdoor events, because of the risk to my health
i have had to have several other people assist me at events just to get any income at all. if my ability to lift and load continues to decline i will have to stop doing almost all events within two years.
you dont look sick
i am flattered. i think most people make this assumption based on two things:
1. i smile a lot
2. i am fat
people apparently have this idea that all illnesses make you look thin and drawn. they dont. some dont affect your weight at all, some make it harder to lose weight. if you cannot exercise, and even getting out of bed is tough you actually tend to gain or stay stable. if you are on steroids or certain other medicines you WILL gain weight.
i am fat
to lose weight i need to fix my diet and exercise.
i am working on my diet, but honestly when everything hurts its tough to wash the dishes and cook, so you make stuff thats fast and easy.
my exercise has been severely limited by finances and my knee and other issues.
i smile a lot
yup, i do. got screamed at for it in basic training. i am also a *salesperson*. you do not make any sales if you huddle up in a corner looking miserable. you smile, lie through your teeth about how wonderful every thing is, and look attentive and interested.
it should tell you something that i have had people come up to me at SALES events and tell me i look a bit down. is something wrong? and i havent been able to stand up even through a whole Dorian's Parlor! i spent half the show sitting down.
(for those who know me, you know i usually only sat down through an entire ICON for lunch...ICON is all weekend, and long hours. Dorian's Parlor was 5 hours total)
but if you mostly see me at an event, where i am selling, then if i look " a bit down" i am probably in severe pain.
so what medical issues do you have?
i have mentioned this before, but here goes:(will probably be amended as i remember more)
Confirmed diagnoses:
Reynaud's syndrome
hypoglycemia
seizure disorder (these go with the learning disability)
neck injury with resulting nerve damage
knee injury (with resulting osteo arthritis)
head trauma
Plantar Fasciitis
chronic anemia
lethal allergy to cigarette smoke (i carry an epi pen)
allergic to penicillin and codeine
contact welt level allergy to garlic (i cant even touch the stuff)
allergic to raw onions
extreme susceptibility to heat and cold, having prior cases of hypothermia and MULTIPLE hospitalizations for heat exhaustion and dehydration.
multiple miscarriages (infertility, with an unknown but probably systemic cause, like hormone malfunctions)
Learning Disabilities
depression
social anxiety
PTSD
Probable Diagnoses:
Rheumatoid Arthritis (almost certainly)
Fibromyalgia (if RA doesnt explain it) technically i have a diagnoses for this, but since it was a fibro clinic i am being cautious.
Adrenal Fatigue (maybe)
Thyroid (maybe)
probably allergy to every member of the "caine" family (lidocaine, novacaine, etc... mom is violently allergic)
well you are getting better, right?
no
i got better from the neck injury in the sense that i can now use my right arm. i never recovered full use.
most of the other issues DO NOT GO AWAY. they can be held in check, or managed, or worked around, but all it takes is one slip up and i am back at square one.
if i LOOK at a flashing light at 3x a second for too long, or have another head injury, i could lose my drivers license for another ten years.
just to give you an example.
my reynauds is doing what reynauds does. get worse.
i can no longer go into a freezer section of a supermarket without risk. i carry gloves with me at all times. i cant get vegetables out of my own freezer without gloves.
i have stopped going out for non essentials from October thru early March. and i dont go out after dark. not because i cannot see, but because the temperature drops.
even in a wool sweater and gloves, i have to be frightened if the temperature fluctuates.
my plantar fasciitis requires me to do foot exercises EVERY day, to avoid a relapse... and i still get them every now and then anyway. my knee? it gets better or worse based on use/over use and the weather. i cannot do anything about the weather.
i never had elbow problems before. for two days i couldnt even brush the hair out of my own eyes because of my elbows not working.
oh yea, real better.
why do you keep talking about your mom?
because over time my mother and i developed all the same allergies, reynaud's syndrome, and more.
the only things i have that she doesnt are a couple of allergies and my seizures.
at this point the only medical conditions/allergies/etc that mom has that i dont have (or at least its unconfirmed) is her RA and her Mitral Valve Prolapse.
am i whining? Yes a bit
are there people worse off than me? oh HLL YES. i know several of them. i am in no way claiming to be worse off than anyone else.
i am one of the lucky ones. IF i have RA (and i suspect i do) then if i take after my mom i have the slow moving variation.
most of my issues can be managed, with care, and money...
but don't tell me that i dont have any serious illnesses, or pain, or that "well you have a business so it cant be that bad"
I have a business
yes i do. people make a lot of assumptions based on the fact that i have this business.
i have cut the number of events i have gone to in half. i have also started making decisions about what events i do sell at based on number of stairs at load in, and number of people who can help me load in. if there is no help for me to load in or out, then even if i do this event i take the MINIMUM goods i can. i can load in a case of jewelry that is on wheels, so i have been focusing on jewelry rather than beads, because beads are HEAVY.
i have been unable to lift any significant amount since my car accident and neck injury 15 some years ago. that is the one where i lost almost all use of my right arm for five years. This is why my bead boxes are small, because i can barely lift one. strong healthy people i have watched carry three or four at a time! i cannot lift more than one if they are at all loaded.
wayne used to help me load and unload the car. he also used to come to some events with me. he cannot come to events anymore. he also cannot help me load or unload the car, because as many people can attest he lifts two boxes and collapses for the day.
so, i lost my "at home help" to load and unload, and my own abilities are going down fast.
i no longer sign up for new outdoor events, because of the risk to my health
i have had to have several other people assist me at events just to get any income at all. if my ability to lift and load continues to decline i will have to stop doing almost all events within two years.
you dont look sick
i am flattered. i think most people make this assumption based on two things:
1. i smile a lot
2. i am fat
people apparently have this idea that all illnesses make you look thin and drawn. they dont. some dont affect your weight at all, some make it harder to lose weight. if you cannot exercise, and even getting out of bed is tough you actually tend to gain or stay stable. if you are on steroids or certain other medicines you WILL gain weight.
i am fat
to lose weight i need to fix my diet and exercise.
i am working on my diet, but honestly when everything hurts its tough to wash the dishes and cook, so you make stuff thats fast and easy.
my exercise has been severely limited by finances and my knee and other issues.
i smile a lot
yup, i do. got screamed at for it in basic training. i am also a *salesperson*. you do not make any sales if you huddle up in a corner looking miserable. you smile, lie through your teeth about how wonderful every thing is, and look attentive and interested.
it should tell you something that i have had people come up to me at SALES events and tell me i look a bit down. is something wrong? and i havent been able to stand up even through a whole Dorian's Parlor! i spent half the show sitting down.
(for those who know me, you know i usually only sat down through an entire ICON for lunch...ICON is all weekend, and long hours. Dorian's Parlor was 5 hours total)
but if you mostly see me at an event, where i am selling, then if i look " a bit down" i am probably in severe pain.
so what medical issues do you have?
i have mentioned this before, but here goes:(will probably be amended as i remember more)
Confirmed diagnoses:
Reynaud's syndrome
hypoglycemia
seizure disorder (these go with the learning disability)
neck injury with resulting nerve damage
knee injury (with resulting osteo arthritis)
head trauma
Plantar Fasciitis
chronic anemia
lethal allergy to cigarette smoke (i carry an epi pen)
allergic to penicillin and codeine
contact welt level allergy to garlic (i cant even touch the stuff)
allergic to raw onions
extreme susceptibility to heat and cold, having prior cases of hypothermia and MULTIPLE hospitalizations for heat exhaustion and dehydration.
multiple miscarriages (infertility, with an unknown but probably systemic cause, like hormone malfunctions)
Learning Disabilities
depression
social anxiety
PTSD
Probable Diagnoses:
Rheumatoid Arthritis (almost certainly)
Fibromyalgia (if RA doesnt explain it) technically i have a diagnoses for this, but since it was a fibro clinic i am being cautious.
Adrenal Fatigue (maybe)
Thyroid (maybe)
probably allergy to every member of the "caine" family (lidocaine, novacaine, etc... mom is violently allergic)
well you are getting better, right?
no
i got better from the neck injury in the sense that i can now use my right arm. i never recovered full use.
most of the other issues DO NOT GO AWAY. they can be held in check, or managed, or worked around, but all it takes is one slip up and i am back at square one.
if i LOOK at a flashing light at 3x a second for too long, or have another head injury, i could lose my drivers license for another ten years.
just to give you an example.
my reynauds is doing what reynauds does. get worse.
i can no longer go into a freezer section of a supermarket without risk. i carry gloves with me at all times. i cant get vegetables out of my own freezer without gloves.
i have stopped going out for non essentials from October thru early March. and i dont go out after dark. not because i cannot see, but because the temperature drops.
even in a wool sweater and gloves, i have to be frightened if the temperature fluctuates.
my plantar fasciitis requires me to do foot exercises EVERY day, to avoid a relapse... and i still get them every now and then anyway. my knee? it gets better or worse based on use/over use and the weather. i cannot do anything about the weather.
i never had elbow problems before. for two days i couldnt even brush the hair out of my own eyes because of my elbows not working.
oh yea, real better.
why do you keep talking about your mom?
because over time my mother and i developed all the same allergies, reynaud's syndrome, and more.
the only things i have that she doesnt are a couple of allergies and my seizures.
at this point the only medical conditions/allergies/etc that mom has that i dont have (or at least its unconfirmed) is her RA and her Mitral Valve Prolapse.
am i whining? Yes a bit
are there people worse off than me? oh HLL YES. i know several of them. i am in no way claiming to be worse off than anyone else.
i am one of the lucky ones. IF i have RA (and i suspect i do) then if i take after my mom i have the slow moving variation.
most of my issues can be managed, with care, and money...
but don't tell me that i dont have any serious illnesses, or pain, or that "well you have a business so it cant be that bad"