hi all ,
you know how I did a post titled recovering from a dreadful illness .
how the DRs thought I had legionaries disease , well its not
on the 16th of October 2018 I was diagnosed with a rare illness that has 22 letters in it! yes you read right
here is the name Lymphangioleiomyomatosis. LAM for short .
there are two types of LAM mine is TSC -LAM. and there is sporadic LAM
what happens in LAM is LAM targets the smooth cell lining on the lungs including, the airway .
and blood vessels multiply , abnormally and go where they don't belong, the air sacs in the lungs also swell and form cysts that grow. this causes us to have shortness of breath etc .
its a slow progressive illness .
all LAM patients are different LAM is a woman's disease .
I would rather say illness sounds nicer I reckon .
why LAM gets woman of child bearing years is not really known .
LAM is a rare cystic lung disease , and is not always picked up in some woman for years , it can be misdiagnosed, as
asthma, ,COPD, bronchitis and emphysema . because they are all very similar.
how I was diagnosed was with a blood test and a high resolution CT scan . these lungs are mine and show the spots of LAM.
when I told the chest dr I have tuberous sclerosis complex ,
he pricked his ears up , his eyes bulged wide , and the tests began .
I was referd to him by my dr , because of my constant coughing that would not go away .
if I hadn't had the cough I would never had known.
if I hadn't kept on at the drs , I would never had known
the first two drs wrote it off as , I knew it was more than stress .
feeling very unsatisfied , I went to our family dr , if I could have got into see our dr , first , I would have.
I saw the dr finally and the rest is history .
to help manage LAM , along with your medications , is to reduce stress.
exercise is a big part of helping to manage LAM ,
ti-chi , mediation, and yoga all help with your mind , body, and spirit.
all give you an inner strength to handle , blindsides such as our diagnosis
I know yoga gives me a sense of peace and inner strength I never knew I had .
you can do any exercise within your capabilities .
yoga is my exercise of choice but always ask your dr before doing any form of exercise
remember as hard as it is stay strong you are not alone.
here is a saying I would love to share
.
all life is changing,
all forms of it, and we flow with the river,
or we refuse .
if we flow with the river, we can digest it, as it were,
as we flow, and feel no suffering . accept it.
and we are one with the river ,
resist it and we are hurt.
Christmas Humphries.
(NOTE)
if you want more information about LAM.
contact the LAM foundation
for support groups of patients of LAM
Lammies on facebook
and LAM -talk Australia and new Zealand
for support groups for loved ones of patients of LAM
Lammie loved ones on facebook
Namaste.
you know how I did a post titled recovering from a dreadful illness .
how the DRs thought I had legionaries disease , well its not
on the 16th of October 2018 I was diagnosed with a rare illness that has 22 letters in it! yes you read right
here is the name Lymphangioleiomyomatosis. LAM for short .
there are two types of LAM mine is TSC -LAM. and there is sporadic LAM
what happens in LAM is LAM targets the smooth cell lining on the lungs including, the airway .
and blood vessels multiply , abnormally and go where they don't belong, the air sacs in the lungs also swell and form cysts that grow. this causes us to have shortness of breath etc .
its a slow progressive illness . all LAM patients are different LAM is a woman's disease .
I would rather say illness sounds nicer I reckon .
why LAM gets woman of child bearing years is not really known .
LAM is a rare cystic lung disease , and is not always picked up in some woman for years , it can be misdiagnosed, as
asthma, ,COPD, bronchitis and emphysema . because they are all very similar.
how I was diagnosed was with a blood test and a high resolution CT scan . these lungs are mine and show the spots of LAM.
when I told the chest dr I have tuberous sclerosis complex ,
he pricked his ears up , his eyes bulged wide , and the tests began .
I was referd to him by my dr , because of my constant coughing that would not go away .
if I hadn't had the cough I would never had known.
if I hadn't kept on at the drs , I would never had known
the first two drs wrote it off as , I knew it was more than stress .
feeling very unsatisfied , I went to our family dr , if I could have got into see our dr , first , I would have.
I saw the dr finally and the rest is history .
to help manage LAM , along with your medications , is to reduce stress.
exercise is a big part of helping to manage LAM ,ti-chi , mediation, and yoga all help with your mind , body, and spirit.
all give you an inner strength to handle , blindsides such as our diagnosis
I know yoga gives me a sense of peace and inner strength I never knew I had .
you can do any exercise within your capabilities .
yoga is my exercise of choice but always ask your dr before doing any form of exercise
remember as hard as it is stay strong you are not alone.
here is a saying I would love to share
.
all life is changing,
all forms of it, and we flow with the river,
or we refuse .
if we flow with the river, we can digest it, as it were,as we flow, and feel no suffering . accept it.
and we are one with the river ,
resist it and we are hurt.
Christmas Humphries.
(NOTE)
if you want more information about LAM.
contact the LAM foundation
for support groups of patients of LAM
Lammies on facebook and LAM -talk Australia and new Zealand
for support groups for loved ones of patients of LAM
Lammie loved ones on facebook
Namaste.
