Forums > Social Discussion > auto immune problem- tests and medical stuff
Login/Join to ParticipateBRONZE Member
veteran
1,247 posts
Location: lost, Canada
veteran
1,247 posts
Location: lost, Canada
Posted:
Hoping Doc is online today, but any other experience with mysterious auto immune disorders and testing for them would also be welcomed...
I have had some kind of suspected auto immune disorder for a while now. It seems to have been triggered by the work I did in Thailand after the tsunami- possibily the stress, possibily the exposure to contaminants, so far docs are not sure. It comes and goes. Fortunately, other than a few rough days while travelling, it seems like it is mostly gone the last few months. Yay!
But there are some changes to my joints that seem to be permanent. Not Yay... 
The symptoms lead the doctors to believe it is something like MS, or reactive arthritis, or perhaps even rheumatoid arthritis.Then there are some mysterious syptoms thrown in just to make it extra fun, like bruising , swelling and coldness. This I am told is something called Von Willdenbrands disorder. No treatment unless I get seriously cut, in which case I need blood coagulants fast!!! Again, recently it has been alright, as long as I have someone to carry my pack and tent for me at least some of the time!
( Thanks guys
)
At any rate, I have every single strange unpleasant test I know of in the last year
; Cat, MRI, nerve impedance, blood work of all kinds- you name it. They have seemed to rule out MS and brain tumours, but have not narrowed it down all that much.The bloodwork shows problems, but not a clear indicator for rheumatoid, which seemed the most likely since my parents have/had it. So, more tests.
Tomorrow I go into the hospital to see an auto immune specialist- who I had to wait a whole year to get in to see she is that busy! And I am worrying and wondering what the hell kind of tests I can expect this time?? I cant think of any left! What is she going to do that the others have not? Magic?
It would ease my mind if I had an idea of what I am going into. I tried to call today, but it is a holiday, so no one is there to answer questions... I am wondering why I am even bothering with the tests, it seems irrelevant since it is unlikely I will take their advice for prescriptions anyways and I feel pretty good right now. But I guess I do want to have a better understanding of what my body is doing and if I need to come up with a back up plan for the future?
Thanks
Hoping Doc is online today, but any other experience with mysterious auto immune disorders and testing for them would also be welcomed...
I have had some kind of suspected auto immune disorder for a while now. It seems to have been triggered by the work I did in Thailand after the tsunami- possibily the stress, possibily the exposure to contaminants, so far docs are not sure. It comes and goes. Fortunately, other than a few rough days while travelling, it seems like it is mostly gone the last few months. Yay!
But there are some changes to my joints that seem to be permanent. Not Yay... The symptoms lead the doctors to believe it is something like MS, or reactive arthritis, or perhaps even rheumatoid arthritis.Then there are some mysterious syptoms thrown in just to make it extra fun, like bruising , swelling and coldness. This I am told is something called Von Willdenbrands disorder. No treatment unless I get seriously cut, in which case I need blood coagulants fast!!! Again, recently it has been alright, as long as I have someone to carry my pack and tent for me at least some of the time!
( Thanks guys
) At any rate, I have every single strange unpleasant test I know of in the last year
; Cat, MRI, nerve impedance, blood work of all kinds- you name it. They have seemed to rule out MS and brain tumours, but have not narrowed it down all that much.The bloodwork shows problems, but not a clear indicator for rheumatoid, which seemed the most likely since my parents have/had it. So, more tests.Tomorrow I go into the hospital to see an auto immune specialist- who I had to wait a whole year to get in to see she is that busy! And I am worrying and wondering what the hell kind of tests I can expect this time?? I cant think of any left! What is she going to do that the others have not? Magic?
It would ease my mind if I had an idea of what I am going into. I tried to call today, but it is a holiday, so no one is there to answer questions... I am wondering why I am even bothering with the tests, it seems irrelevant since it is unlikely I will take their advice for prescriptions anyways and I feel pretty good right now. But I guess I do want to have a better understanding of what my body is doing and if I need to come up with a back up plan for the future?
Thanks
"God *was* my co-pilot, but then we crashed, and I had to eat him..."
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
Let your doctors figure it out first, OK? I can only blather on about nonsense that will make you feel much LESS at ease. But keep us posted and best of luck!
Let your doctors figure it out first, OK? I can only blather on about nonsense that will make you feel much LESS at ease. But keep us posted and best of luck!
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
BRONZE Member
veteran
1,247 posts
Location: lost, Canada
veteran
1,247 posts
Location: lost, Canada
Posted:
Oh, no blathering about aspects that will make me feel more stressed please!Good call on that one.
Hows about a professional and convincing : " Don't worry, there are no painful intrusive tests left, you will be just fine."
Please?
Oh, no blathering about aspects that will make me feel more stressed please!Good call on that one.
Hows about a professional and convincing : " Don't worry, there are no painful intrusive tests left, you will be just fine."
Please?
"God *was* my co-pilot, but then we crashed, and I had to eat him..."
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
I can't even say that! We're waaay outside my specialty here! I'm just a pediatrician who does adolescent medicine. 
I can't even say that! We're waaay outside my specialty here! I'm just a pediatrician who does adolescent medicine.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
BRONZE Member
veteran
1,247 posts
Location: lost, Canada
veteran
1,247 posts
Location: lost, Canada
Posted:
uh oh
uh oh
"God *was* my co-pilot, but then we crashed, and I had to eat him..."
BRONZE Member
had her carpal tunnel surgery already thanks v much
4,145 posts
Location: Edinburgh, Scotland (UK)
had her carpal tunnel surgery already thanks v much
4,145 posts
Location: Edinburgh, Scotland (UK)
Posted:
best of luck tomorrow
I'd encourage you to go, if only to find out what's wrong and why. Even if you decide not to go for western medicine treatments, they may give you advice on what to avoid, say, certain foods or physical activities that might trigger it!
And yeah, the backup plan for the future thing sounds like a good reason to go.
best of luck tomorrow
I'd encourage you to go, if only to find out what's wrong and why. Even if you decide not to go for western medicine treatments, they may give you advice on what to avoid, say, certain foods or physical activities that might trigger it!
And yeah, the backup plan for the future thing sounds like a good reason to go.
"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)
Owner of Dragosani's left half
SILVER Member
artisan
1,576 posts
Location: Berkshire, UK
artisan
1,576 posts
Location: Berkshire, UK
Posted:
ok if you need to coagulate your blood then avoid pineapples and grapefruit. (My mother is on anti-coagulants-warfarin) Those 2 fruits have natural anti-coagulant properties so no pineapple binging for you.
ok if you need to coagulate your blood then avoid pineapples and grapefruit. (My mother is on anti-coagulants-warfarin) Those 2 fruits have natural anti-coagulant properties so no pineapple binging for you.
SILVER Member
what goes around comes around. unless you're into stalls.
4,030 posts
Location: Bali, Australia
what goes around comes around. unless you're into stalls.
4,030 posts
Location: Bali, Australia
Posted:
I hope it isn't too horrible Andrea and is of some use as well to making life easier for you. Glad those nice people carried your bags sometimes too!
I hope it isn't too horrible Andrea and is of some use as well to making life easier for you. Glad those nice people carried your bags sometimes too!
.....Can't juggle balls but I sure as hell can juggle details....
BRONZE Member
Mistress of Pink...Multicoloured
6,140 posts
Location: Over There, United Kingdom
Mistress of Pink...Multicoloured
6,140 posts
Location: Over There, United Kingdom
Posted:
Never pick up a duck in a dungeon...
BRONZE Member
Carpal \'Tunnel
5,814 posts
Location: Perth, Australia
Carpal \'Tunnel
5,814 posts
Location: Perth, Australia
Posted:
Its good to find out about VW now rather than pregant and having babies. All that bleeding is icky.
Keep us posted about your mysterious AI disorder.
Its good to find out about VW now rather than pregant and having babies. All that bleeding is icky.
Keep us posted about your mysterious AI disorder.
Is it the Truth?
Is it Fair to all concerned?
Will it build Goodwill and Better Friendships?
Will it be Beneficial to all concerned?
Im in a lonely battle with the world with a fish to match the chip on my shoulder. Gnu in Binnu in a cnu
Dreamer
4,308 posts
Location: York, England
4,308 posts
Location: York, England
Posted:
We actually are treating an animal with a funky auto-immune problem it (seems to have) got from katrina... so tsunami might indeed have brought something interesting. Good luck. I hope they have some answers for you....
We actually are treating an animal with a funky auto-immune problem it (seems to have) got from katrina... so tsunami might indeed have brought something interesting. Good luck. I hope they have some answers for you....
Keep your dream alive
Dreamin is still how the strong survive
Shalom VeAhavah
New Hampshire has a point....
BRONZE Member
veteran
1,247 posts
Location: lost, Canada
veteran
1,247 posts
Location: lost, Canada
Posted:
Well, that appointment is done, and I am I ever glad I went!
Finally, a definative diagnosis, prescription and prognosis. It is good, so you dont need to keep reading! The rest is sort of a long explanation... Read it like a huge sigh of releif if you do.
Best possible news!
I have ( had?!!!It is going away! Yay!!!) reactive arthritis.It is an auto immune response to bacterial or viral exposure, that results in symptoms very much like rheumatoid arthritis. Pain swelling, joint malformation,strange fevers, other wierdness. It was probably triggered by dealing with the contaminated wells after the tsunami, since that is when I had the first sort of "attack".
The good news is that the specialist says that what I have is not progressively degenerative- meaning I am through the worst of it, and will likely just get better and better ! Less frequent flare ups and less intense responses... In fact she suspects that the problems that I have now, since they are so minimal compared to the original flare ups, are just residual adjustments and pain from some of the joint malformations, not actually an auto immune response any more . There is some permanent damage in my hands and one foot, but she gave me a series of management techniques, and some drugs to use when I need them, and with this I should be able to keep doing my work.
This is very very good news. I dont think I fully realized how terrified I was that it was going to get worse, or was chronic and degenerative in nature- like MS, or some of the more serious forms of arthritis. I was scared I would lose the ability to do my art, to use my hands, to travel the way I like to...
The first bouts I had with this disease were excruitatingly dehabilitating- I could not even squeeze a shampoo bottle one day, and wondered how on earth I was going to function in my life. I had just come back from a huge disaster zone, where I lost eight friends , and thousands died; then came back ill, and was in and out of the hospital here , while so many various important people in my life in Canada were also hospitalized, and dying- it was a nightmare. Absolute nightmare.
At one point I had my dad in the hospital with a heart attack, my mom in a different one with a stroke, and uncle in for liver failure, and another aunt a province over recovering from a bypass... Close friend killed themself...Running from hospital to funeral to doctor- trying to be there for everyone who needed me, while I was in constant pain--it was maddness. For over a year now I have felt a sort of a cloud of impending doom over my head as I got all these tests,and they kept looking for one horrible possibility after another. Thankfully that nightmare is over.
I feel like I am brand spankin new, and free to do absolutely anything!
Hugest thanks in the world to Andy and MK, who came while I was going through some of the worst of it and helped me through.And Nick, so full of love. I dont know what I would have done without you guys...
Yay!!!I think I will sleep properly tongiht for the first time in a very, very lonng time... ZZZZZZZZZZZZZZZZZZ
Well, that appointment is done, and I am I ever glad I went!Finally, a definative diagnosis, prescription and prognosis. It is good, so you dont need to keep reading! The rest is sort of a long explanation... Read it like a huge sigh of releif if you do.
Best possible news!
I have ( had?!!!It is going away! Yay!!!) reactive arthritis.It is an auto immune response to bacterial or viral exposure, that results in symptoms very much like rheumatoid arthritis. Pain swelling, joint malformation,strange fevers, other wierdness. It was probably triggered by dealing with the contaminated wells after the tsunami, since that is when I had the first sort of "attack".
The good news is that the specialist says that what I have is not progressively degenerative- meaning I am through the worst of it, and will likely just get better and better ! Less frequent flare ups and less intense responses... In fact she suspects that the problems that I have now, since they are so minimal compared to the original flare ups, are just residual adjustments and pain from some of the joint malformations, not actually an auto immune response any more . There is some permanent damage in my hands and one foot, but she gave me a series of management techniques, and some drugs to use when I need them, and with this I should be able to keep doing my work.
This is very very good news. I dont think I fully realized how terrified I was that it was going to get worse, or was chronic and degenerative in nature- like MS, or some of the more serious forms of arthritis. I was scared I would lose the ability to do my art, to use my hands, to travel the way I like to...
The first bouts I had with this disease were excruitatingly dehabilitating- I could not even squeeze a shampoo bottle one day, and wondered how on earth I was going to function in my life. I had just come back from a huge disaster zone, where I lost eight friends , and thousands died; then came back ill, and was in and out of the hospital here , while so many various important people in my life in Canada were also hospitalized, and dying- it was a nightmare. Absolute nightmare.
At one point I had my dad in the hospital with a heart attack, my mom in a different one with a stroke, and uncle in for liver failure, and another aunt a province over recovering from a bypass... Close friend killed themself...Running from hospital to funeral to doctor- trying to be there for everyone who needed me, while I was in constant pain--it was maddness. For over a year now I have felt a sort of a cloud of impending doom over my head as I got all these tests,and they kept looking for one horrible possibility after another. Thankfully that nightmare is over.
I feel like I am brand spankin new, and free to do absolutely anything!
Hugest thanks in the world to Andy and MK, who came while I was going through some of the worst of it and helped me through.And Nick, so full of love. I dont know what I would have done without you guys...
Yay!!!I think I will sleep properly tongiht for the first time in a very, very lonng time... ZZZZZZZZZZZZZZZZZZ
"God *was* my co-pilot, but then we crashed, and I had to eat him..."
GOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales
Pirate Pixie Crew Captain
8,428 posts
Location: Wales
Posted:
Yippeeeee! Good News Andrea!
I hope that the flare ups are small and far between if at all.
Yippeeeee! Good News Andrea!
I hope that the flare ups are small and far between if at all.
Feed me Chocolate!!! Feed me NOW!
BRONZE Member
had her carpal tunnel surgery already thanks v much
4,145 posts
Location: Edinburgh, Scotland (UK)
had her carpal tunnel surgery already thanks v much
4,145 posts
Location: Edinburgh, Scotland (UK)
Posted:
YAYYYYYY! So glad to hear that, Andrea!!
Those management techniques will probably do a great job! I had some kind of inflammation along one of my tendons, and nothing at all worked (including not juggling for months, resting the hand, running around with the hand in a silly plastic splint), until a physio showed me a different way to hold my thumb when doing things and it went away!! So I hope they work just as fine for you
YAYYYYYY! So glad to hear that, Andrea!!
Those management techniques will probably do a great job! I had some kind of inflammation along one of my tendons, and nothing at all worked (including not juggling for months, resting the hand, running around with the hand in a silly plastic splint), until a physio showed me a different way to hold my thumb when doing things and it went away!! So I hope they work just as fine for you
"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)
Owner of Dragosani's left half
DIAMOND Member
The Ministry of Manipulation
2,523 posts
Location: Bristol, United Kingdom
The Ministry of Manipulation
2,523 posts
Location: Bristol, United Kingdom
Posted:
Yippee. Hugs
Sounds like good news for the best houseguest/live in chef we've had.
Clocks on the wall, but its only 6 am there.
Hugs
Drew and mithi
Yippee. Hugs
Sounds like good news for the best houseguest/live in chef we've had.
Clocks on the wall, but its only 6 am there.
Hugs
Drew and mithi
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
WHEW.
*wipes sweat off forehead*
Don't SCARE us like that, honey!
Written by: andrealee
I have ( had?!!!It is going away! Yay!!!) reactive arthritis.
WHEW.
*wipes sweat off forehead*
Don't SCARE us like that, honey!
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
BRONZE Member
Carpal \'Tunnel
5,814 posts
Location: Perth, Australia
Carpal \'Tunnel
5,814 posts
Location: Perth, Australia
Posted:
Is it the Truth?
Is it Fair to all concerned?
Will it build Goodwill and Better Friendships?
Will it be Beneficial to all concerned?
Im in a lonely battle with the world with a fish to match the chip on my shoulder. Gnu in Binnu in a cnu
Dreamer
4,308 posts
Location: York, England
4,308 posts
Location: York, England
Posted:
Keep your dream alive
Dreamin is still how the strong survive
Shalom VeAhavah
New Hampshire has a point....
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
So wait...if you're "fit for duty" then...
I think a spanking is in order for giving us that scare.
So wait...if you're "fit for duty" then...
I think a spanking is in order for giving us that scare.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
BRONZE Member
veteran
1,247 posts
Location: lost, Canada
veteran
1,247 posts
Location: lost, Canada
Posted:
hmmn, yes fit for duty, feeling pretty good now, but just freaked myself out again reading about this disease yikes! No wonder I felt so crappy.
* note to self; never research anything. Better not to know gory details!!*
But the specialist I just saw looked at all the test results, did a few of her own, and still was really confident my prognosis was good. So I am just going to believe her , at least for now. I need a break!
Did not mean to scare anyone, was just scared myself. It is very wierd and disorienting when your body is doing stange dis-abling things randomly without your consent, and no one seemed to know why or what to do about it!
You know, I had really started to believe that every thing, and everyone I cared about in my life was just going to be taken from me, one by one,little by little, and there was nothing I could do to stop it, other than to stop caring that it was happenning. I was going numb- the most efficient painkiller out there.
Last week was the last of the burials and memorials, then this week the last of the testing- so I can move on. At least I feel I have a bit of understanding and control now, and a bit of hope creeping back ...
The Von Will- whatever.... causing the bruising, still seems to be a challenge I will have to deal with, but a manageable one.
but yes please,
Spank me!!!
( not too hard though, kay?)
hmmn, yes fit for duty, feeling pretty good now, but just freaked myself out again reading about this disease
yikes! No wonder I felt so crappy.* note to self; never research anything. Better not to know gory details!!*
But the specialist I just saw looked at all the test results, did a few of her own, and still was really confident my prognosis was good. So I am just going to believe her , at least for now. I need a break!
Did not mean to scare anyone, was just scared myself. It is very wierd and disorienting when your body is doing stange dis-abling things randomly without your consent, and no one seemed to know why or what to do about it!
You know, I had really started to believe that every thing, and everyone I cared about in my life was just going to be taken from me, one by one,little by little, and there was nothing I could do to stop it, other than to stop caring that it was happenning. I was going numb- the most efficient painkiller out there.
Last week was the last of the burials and memorials, then this week the last of the testing- so I can move on. At least I feel I have a bit of understanding and control now, and a bit of hope creeping back ...
The Von Will- whatever.... causing the bruising, still seems to be a challenge I will have to deal with, but a manageable one.
but yes please,
Spank me!!!
( not too hard though, kay?)
"God *was* my co-pilot, but then we crashed, and I had to eat him..."
BRONZE Member
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)
Still wiggling
5,967 posts
Location: Belfast, Northern Ireland (UK)
Posted:
Hurrah
That's great news lady... and a huge relief, no doubt...
It's great that things are starting to become shiny again
With love and best wishes
Clare xx
Hurrah
That's great news lady... and a huge relief, no doubt...
It's great that things are starting to become shiny again
With love and best wishes
Clare xx
Getting to the other side 
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
And now you understand what it's like to be chronically ill...
Written by: andrealee
hDid not mean to scare anyone, was just scared myself. It is very wierd and disorienting when your body is doing stange dis-abling things randomly without your consent, and no one seemed to know why or what to do about it!
You know, I had really started to believe that every thing, and everyone I cared about in my life was just going to be taken from me, one by one,little by little, and there was nothing I could do to stop it, other than to stop caring that it was happenning. I was going numb- the most efficient painkiller out there.
And now you understand what it's like to be chronically ill...
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
BRONZE Member
veteran
1,247 posts
Location: lost, Canada
veteran
1,247 posts
Location: lost, Canada
Posted:
Yeah, it has brought me a much more direct form of compassion for people. I understand the experience of illness, and of health,and of death, so much differently and more directly now. Physically, and emotionally. I dont think I really understood even simple things before -- though I certainly thought I did, and was considered a good compassionate healer as a herbalist . Ha.
Like I always sort of thought, ah well, if you cant move, thats horrible, but you can still think, imagine etc etc, and that would make it bearable. Did not realize that pain, and meds, can even take away your ability to do that- your mind does not necessarily get to wander free at all.
I learned about how much of illness is an isolating, solitary experience, yet strangely crowded with serious strangers poking and prodding about your body and your world... I learned patience, lost it, and learned it again.
Faced all sorts of fears I was not even aware I had.We are so very fragile, and yet so very tenacious. Too many lessons to even ennumerate. I hope I can use that knowledge well in all aspects of my life.
I have a much deeper , profound and sincere respect for people that deal with those challenges on a daily basis, without reprieve. They amaze me. You must see that every day Doc. Do you find it inspiring? Or terrifying? Or?
I know people that say illness is a gift. Yes, I received a lot of insight from the experiences of the last while, but can't say I would consider it a good trade! Not yet at least, maybe I am still too tired and overwhelmed to shift my perspective that much. The illness was mixed in with a lot of other trauma, so it is hard to separate parts of it in my mind.
Roll back time, will ya, I will gladly take the soothing balm of ignorance, thanks very much...
EDITED_BY: andrealee (1155253547)
Yeah, it has brought me a much more direct form of compassion for people. I understand the experience of illness, and of health,and of death, so much differently and more directly now. Physically, and emotionally. I dont think I really understood even simple things before -- though I certainly thought I did, and was considered a good compassionate healer as a herbalist . Ha.
Like I always sort of thought, ah well, if you cant move, thats horrible, but you can still think, imagine etc etc, and that would make it bearable. Did not realize that pain, and meds, can even take away your ability to do that- your mind does not necessarily get to wander free at all.
I learned about how much of illness is an isolating, solitary experience, yet strangely crowded with serious strangers poking and prodding about your body and your world... I learned patience, lost it, and learned it again.
Faced all sorts of fears I was not even aware I had.We are so very fragile, and yet so very tenacious. Too many lessons to even ennumerate. I hope I can use that knowledge well in all aspects of my life.
I have a much deeper , profound and sincere respect for people that deal with those challenges on a daily basis, without reprieve. They amaze me. You must see that every day Doc. Do you find it inspiring? Or terrifying? Or?
I know people that say illness is a gift. Yes, I received a lot of insight from the experiences of the last while, but can't say I would consider it a good trade! Not yet at least, maybe I am still too tired and overwhelmed to shift my perspective that much. The illness was mixed in with a lot of other trauma, so it is hard to separate parts of it in my mind.
Roll back time, will ya, I will gladly take the soothing balm of ignorance, thanks very much...
EDITED_BY: andrealee (1155253547)
"God *was* my co-pilot, but then we crashed, and I had to eat him..."
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
I have ankylosing spondylitis, an autoimmune disease that causes me pain, progressive deformity and disability, and weakness on a daily basis.
I know it better than you think.
Written by: andrealee
I have a much deeper , profound and sincere respect for people that deal with those challenges on a daily basis, without reprieve. They amaze me. You must see that every day Doc. Do you find it inspiring? Or terrifying? Or?
I have ankylosing spondylitis, an autoimmune disease that causes me pain, progressive deformity and disability, and weakness on a daily basis.
I know it better than you think.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
BRONZE Member
veteran
1,247 posts
Location: lost, Canada
veteran
1,247 posts
Location: lost, Canada
Posted:
Ah, Doc, I guess you know very well!
Sorry to hear that you are dealing with chronic illness.
!!! I am just beginning to understand how hard that sort of thing can be.
Your own direct experience with it must add hugely to your insight as a practitioner, but what a way to learn, hey.
Has the process of dealing with it been scary for you too?It seems some people manage so well, and yet for me, there was so much despair associated with the weakness, loss of movement, and loss of independance.I rarely even spoke of it to people, cause everything I had to say was just negative. I even hated people asking how are you, or offering to carry things... I am not sure if I would have ever adjusted if it had been ongoing-- though the coming and going aspect was also pretty frustrating, never knowing what was next made me crazy. I think your condition does that too? Yuk.
I will slide you into my list of inspiring people dealing with chronic illness.From what I know, you are pretty amazingly accomplished, and I never had the slightest idea you had this kind of challenge in the mix!
Ah, Doc, I guess you know very well!
Sorry to hear that you are dealing with chronic illness.
!!! I am just beginning to understand how hard that sort of thing can be.Your own direct experience with it must add hugely to your insight as a practitioner, but what a way to learn, hey.
Has the process of dealing with it been scary for you too?It seems some people manage so well, and yet for me, there was so much despair associated with the weakness, loss of movement, and loss of independance.I rarely even spoke of it to people, cause everything I had to say was just negative. I even hated people asking how are you, or offering to carry things... I am not sure if I would have ever adjusted if it had been ongoing-- though the coming and going aspect was also pretty frustrating, never knowing what was next made me crazy. I think your condition does that too? Yuk.
I will slide you into my list of inspiring people dealing with chronic illness.From what I know, you are pretty amazingly accomplished, and I never had the slightest idea you had this kind of challenge in the mix!
"God *was* my co-pilot, but then we crashed, and I had to eat him..."
DIAMOND Member
The Ministry of Manipulation
2,523 posts
Location: Bristol, United Kingdom
The Ministry of Manipulation
2,523 posts
Location: Bristol, United Kingdom
Posted:
Hey lightning, I didn't know that.
My grandfather had it. yea, what andrea said, and be glad again for advances in modern medicine
Andrea
Hey lightning, I didn't know that.
My grandfather had it. yea, what andrea said, and be glad again for advances in modern medicine
Andrea
GOLD Member
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
HOP Mad Doctor
13,925 posts
Location: San Francisco, CA, USA
Posted:
Humira has me in remission.
I give myself my next injection on Sunday... every 10 days.
Humira has me in remission.
I give myself my next injection on Sunday... every 10 days.
-Mike
Certified Mad Doctor and HoP High Priest of Nutella
A buckuht n a hooze! -Valura
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