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Re: [IP] Frustrated, need to vent!



On SSI, never paid a cent for anything concerning my pump...all supplies  
for pump & meter
 
 
In a message dated 1/25/2014 8:22:40 P.M. Central Standard Time,  
email @ redacted writes:

No I am  on medicaid.

On Saturday, January 25, 2014 7:14:45 PM, Kathie Kienle  wrote:
> If you are on disability do you have Medicare coverage?  Medicare covers a
pump
> and supplies and if you qualify I think you  can get help with the 
difference
> after Medicare. Just a  guess.
>
> Sent from my iPad
>
>> On Jan 25, 2014,  at 9:07 PM, Lola <email @ redacted> wrote:
>>
>>  You can order it online or get certain places to order it. Buy it  from
Canada
>> even. Just do some searches.
>> Or try  laxaday. They sell a cheap kind at walmart. Or see if you can 
get  it
>> covered under disability.
>>
>>  Lolita
>>
>> <3
>>
>> Sent from my  iPhone
>>
>>> On Jan 25, 2014, at 8:48 PM,  SomeoneSomewhere <email @ redacted>  wrote:
>>>
>>> Last I was told domperidone is not  approved by the FDA and can not be 
sold
> > here. My GI suggested I  go to Mexico to get it. He's the same GI that
wanted
> to
>>  put in a g-tube. Maybe I should have taken him up on  that.
>>>
>>>> On Saturday, January 25, 2014  6:39:51 PM, Lola wrote:
>>>> Sounds like your on the right  track.
>>>> You have a GREAT idea. Video yourself !!! What  better way. Or yes 
take the
>>> docs
>>>> for a  walk.
>>>> See what they say then !!
>>>> I hear  ya about not wanting yet another doc. If you have a stomach  
doc
>>> already
>>>> ask for domperidone. It's no  wY at all as bad as reglan. The worst 
side
>>>  effect
>>>> will be that it doesn't do anything at  all.
>>>>
>>>> Try the weights. Maybe one day  that 1/4 mile will seem like kids play 
 !
>>>>
>>>>  Lolita
>>>>
>>>>  <3
>>>>
>>>> Sent from my  iPhone
>>>>
>>>>> On Jan 25, 2014, at 8:00  PM, SomeoneSomewhere <email @ redacted>  
wrote:
>>>>>
>>>>>  Thanks.
>>>>> I am aware that calories in - calories out =  weight loss. According 
to my
>>>> basal metabolic rate I would  have to eat 640-690 calories a day to 
lose 2
>> lbs
>>>  a
>>>> week, which is what is recommended. I just don't know if  I can wait 15
>> weeks
>>> or
>>>> more to  lose 25% of my body weight which is what they say helps to  
improve
>>>> diabetes. I am going downhill faster than that. I  never looked at the
fiber
>>>> content of glucerna.  :(
>>>>> I have tried Reglan (metoclopramine). That is one  evil drug. It gave 
me
>>>> severe side effects in 2 days. I  still take it if my stomach is truly
>> backed
>>>  up
>>>> and I smell like rotten food, but on a prn basis.  Usually instead of 
stuff
>>> going
>>>> down though  it just makes me vomit. On the other hand, at least I am  
not
in
>>> so
>>>> much pain if I vomit it  up.
>>>>> I have a 3 lb weight. I will use that for now. I  try to walk to the
>>> dumpster
>>>> or to my car  (about the same distance) once or twice a day. My 
mailbox  is
>>>> another story. It is about 1/4 mile away back and  forth. I struggle 
to get
>>> there
>>>> and back.  But I force myself every few days to otherwise my mail lady 
 will
>>> send
>>>> my mail to the post office which  is even worse. I did my yearly 
allotment
>> of
>>>  10
>   >>> PT sessions a year. I don't get more until  October. :( I kept 
falling
> asleep
>>>> during it.  Embarrassing to say the least. They did give me some  
resistance
>>> bands
>>>> that I do use for my weak  hips and shoulders, probably not as 
faithfully
as
>>  I
>>>> should. I also try to clean my house for a minute or two  every time I 
get
>> up
>>> to
>>>> refill  my drink. That too exhausts me.
>>>>> If I wanted to deal  with more doctors, I would ask to do another 
cardiac
>>>>  stress test, which I failed last time in 5 minutes 2 years ago. Good  
thing
>>>> though, is I don't have any coronary blockages! I  just don't want to 
deal
>>> with
>>>> another  doctor. I am seriously thinking about asking my dietician or 
my dr
>>  to
>>>> take a short walk with me so they can see what happens.  Either that or
>>>> beg/borrow/steal a camcorder and take them  a video of it. Wonder if I 
can
>> do
>>>  a
>>>> selfie video on my iPhone? When I exercise, I end up  doing deep in 
breaths
>>> and
>>>> pursing  exhalation. I have tried to concentrate on taking more even  
slower
>>>> breaths but it hasnt  worked.
>>>>> I have been to the ER at least once a month  for the last year, 
sometimes
>>>> more. I swore they would keep  me on more than one occasion and they 
didnt.
>>  As
>>>> much as I hate hospitals being in one for observation  and/or testing 
for a
>>> week
>>>> or so would  probably help me a lot.
>>>>> As far as my insulin is  concerned. I take 50u of levemir at 9 am, 
and 50u
>>>  at
>>>> 9pm. I take Novolog if I am over 150 on a sliding  scale.
>>>>>
>>>>>> On Saturday,  January 25, 2014 4:33:08 PM, Lola wrote:
>>>>>> In order  to lose weight - when our bodies are working - you need  to
spend
>>>>> more
>>>>>> calories  than you eat.
>>>>>> Fiber (glucerna has 3 gm 12% daily)  can make your gastroparesis 
worse.
>> (
>>>>  have
>>>>>> it I know).
>>>>>> If  your eating mostly liquids don't cut out fat. You need  that.
>>>>>> Don't eat a lot at  once.
>>>>>> Eat small meals. Even a  fruit.
>>>>>> It's so very hard to exercise but push  yourself. If you do one 
minute
>> today
>>>>>  do
>>>>>> 1.5 tmrw. Then  2.
>>>>>>
>>>>>> Exercise makes you  feel good ...
>>>>>> I have lung function at 42% I know  how hard it is to walk. I can't 
walk
n
>>>>>  talk.
>>>>>> Be admitted if you have to. Tell the  hospital your at your wits end 
and
>>>>  need
>>>>>> help. They can and should teach you  everything.
>>>>>>
>>>>>> Are you on  gastro meds ?
>>>>>>
>>>>>> Drink  water. And then more.
>>>>>> Show your doctor your  exercising trying etc to do what she wants ...
>>>>  Actually
>>>>>> work with her. And either it'll work or  you can say SEE it didn't  
work.
>>>>>>
>>>>>> Walking and  other exercises actually help gastro too.
>>>>>> Go to  walmart and buy 1 5 lb dumbbell. It'll cost 5$. You can use  
it
>>>> sitting
>>>>>> down laying  down.
>>>>>> You can actually use different muscles  depending if your sitting it
>>  laying.
>>>>>>
>>>>>> You find you  need less insulin too if you work at it.
>>>>>> I lift 5  lbs for ten minutes a day and I've actually been able to
>>>  decrease
>>>> my
>>>>>> insulin ratio.  After 1 week !!
>>>>>>
>>>>>> Are  you on long acting shots ?
>>>>>> It sounds like you  really have no more choices than to do what the 
docs
>>>>  said.
>>>>>> I'd do what they want just to prove it  doesn't work.
>>>>>>
>>>>>> And like  I said ... If it does ....
>>>>>>  Lolita
>>>>>>
>>>>>>  <3
>>>>>>
>>>>>> Sent from my  iPhone
>>>>>>
>>>>>>> On Jan 25,  2014, at 2:54 PM, Urb Anism <email @ redacted>  
wrote:
>>>>>>>
>    >>>>>> Whoa bottled juice....okay! And taste is not an issue  at this 
point,
> this
>>>>>>> is an attempt to  meet nutritive challenges. I'd prefer not to eat 
fat
>>  free
>>>>>>> Greek yogurt all the time, but what can  one do? Put ginger in it? 
Sure.
>>>  Try
>>>>>>> some kale carrot ginger with the dial on  ELEVEN! Or some chard
>> (extracted)
>>>>>>>  with Asian pear and  chipotle.
>>>>>>>
>>>>>>>  Pomegranate jicama romaine. Butternut squash cinnamon  peach.
>>>>>>>
>>>>>>>  Wow.
>>>>>>>
>    >>>>>>> On Saturday, January 25, 2014, SomeoneSomewhere  
<email @ redacted>
>  wrote:
>>>>>>>>
>>>>>>>>  I have tried juicing. I would rather buy it in a bottle. Nothing  
I
ever
>>>>>>>> juiced tasted good. In fact,  most tasted like dirt.  :)
>>>>>>>>
>>>>>>>>>  On 1/25/2014 10:42 AM, Urb Anism  wrote:
>>>>>>>>>
>  >>>>>>>> I have a *question*. What about  juicing/extracting? I know 
those can
>  be
>>>>>>>>> expensive, but...I'm just trying to  think of something. 
Extracting
>>>>  removes
>>>>>>>>> the bulk of fiber from food,  just juicing would pulverize it so 
fine
>>>  that
>>>>>>>>> it would be  liquid.
>>>>>>>>>
>>>>>>>>>  Won't be easy. I have Gastroparesis also, and despaired. I  drank
apple
>>>>>>>>> cider vinegar (what??)  for an entirely different purpose--it  
helped
>>>>>>>>> my Gastroparesis instead, by a  fluke.  Weird.
>>>>>>>>>
>>>>>>>>>  I hope YOU find your solution, by trial and error, by  
happenstance,
>>>>>>>>>  through
>>>>>>>>> good fortune, good  advice--whatever it  takes.
>>>>>>>>>
>>>>>>>>>  I'm not recommending anything, but I wish you  well.
>>>>>>>>>
>>>>>>>>>  B
>>>>>>>>>
>>>>>>>>>
>>>>>>>>>
>>>>>>>>>  On Saturday, January 25, 2014,  SomeoneSomewhere
>>>>>>>>>  <email @ redacted<javascript:_e({}, 'cvml',  'email @ redacted');>>
>>>>>>>>>  wrote:
>>>>>>>>>
>>>>>>>>>  I don't post here much and I don't know who else to vent to so I 
 hope
>>>>>>>>>> you all don't mind. Please  keep in mind, I am not looking for
>>  judgement
>>>>>>>>>> for the choices I am  making right now. If you have such, please 
 keep
>>>>>>>>>> them to  yourself.
>>>>>>>>>>
>>>>>>>>>>  My diabetes (last a1c 9.9), neuropathy (lots of untreated  
pain),
>   >>>>>>>>> gastroparesis  (lots of untreated vomiting because I am 
limited to
>  very
>>>>>>>>>> few foods
>>>  
<http://www.emilysstomach.com/2013/01/gastroparesis-diet-from-mayo.html>
>>>>>>>>>>  not to mention the food allergies I have), neurogenic  bladder
(peeing
>>>>>>>>>> myself all the  time or cant pee at all) and my blood pressure  
etc
are
>>>>>>>>>> all out of control. I  have been to dr after dr trying to get 
help
and
>>>  as
>>>>>>>>>> one dr put it frankly, if I am  not going to help myself (by  
losing
>>>>>>>>>> weight and getting my a1c  down etc) there is nothing she can or 
will
>> do
>  >>>>>>>>> for me. This dr told me that she expects  me to vigorously 
exercise
> for
>    >>>>>>>>> the next 8 weeks until I see her again. I  told her I need 
to take
>  baby
>>>>>>>>>> steps and she huffed and said  well when you are ready you just 
let
me
>    >>>>>>>>> know. I can't sit up without my blood  pressure raising by 
40-50
>  points
>>>>>>>>>> and it makes me woozy and  so I have to stay in bed half the  
time.
The
>>>>>>>>>> other half the time  is because I am in so much pain, I am  
exhausted
>>>>>>>>>> because I sleep an hour  or so at a time. I can't walk more than 
30
>>>  yards
>>>>>>>>>> to take out my garbage  without being out of breath and so 
exhausted
>>> when
>  >>>>>>>>> I get back I fall asleep. My PCP called  me into her office 
because
>  she
>>>>>>>>>> has received similar letters  from other dr's she has referred 
me  to
>>>>>>>>>> lately. They have also boiled  things down to my problems being
>>>>>>>>>>  psychologically  based.
>>>>>>>>>>
>>>>>>>>>>  I do have an adrenal tumor which is sporadically producing
>  >>>>>>>>> norepinephrine and my aldosterone levels  are either 
borderline high
>  or
>>>>>>>>>> almost nill. My cortisol level  likewise is not giving consistent
>>>  numbers
>>>>>>>>>> and I am waiting for a 24  hour cortisol test to come back. This 
is
>>  part
>>>>>>>>>> of the reason I am seeing so  many specialists. I am convinced  
my
>>>>>>>>>> diabetes is so out of control  because of my adrenal gland or 
some
>>  other
>>>>>>>>>> hormone causing things to  truly be out of my control. Back in  
Sept,
I
>>>>>>>>>> was forced into a  psychiatric ward under the threat of being
>>  petitioned
>>>>>>>>>> by the court because my  diabetes is out of control and it must 
be  my
>>>>>>>>>> fault. I was screamed at twice  by the medical doctor there for
>>  stealing
>>>>>>>>>> food, hiding food you  name it.
>>>>>>>>>> Several doctors suggested  an insulin pump, however my insurance 
does
>>>  not
>>>>>>>>>> cover one yet they cover the  supplies. So I contacted the 
Charles
Ray
>  >>>>>>>>> III Association and they said they would  sell me a 
refurbished one
>  for
>>>>>>>>>> $1,360 cash. I am on  disability and that is twice what I get  a
month,
>>>>>>>>>> and I don't qualify  for a credit card. I have sold a lot of  my
things
>>>>>>>>>> trying to save for it  but instead the money has gone to 
Glucerna.  My
>>>>>>>>>> insurance won't pay for that  either unless I have a feeding  
tube.
>>>>>>>>>> My blood sugar has bordered  on 600 many times in the last few 
months
>>>  and
>>>>>>>>>> my blood pressure spikes puts  me at imminent risk of a heart 
attack
>> or
>>>  a
>>>>>>>>>>  stroke.
>>>>>>>>>>
>>>>>>>>>>  I called my insurance about bariatric surgery and they said I  
don't
>>>>>>>>>> qualify because my BMI is  slightly too low (34 and it has to be 
35)
>>  and
>>>>>>>>>> because they require that I  prove for 6 months that I exercise 
and I
>>>  eat
>>>>>>>>>> fruits and  veggies.
>>>>>>>>>> I don't know what else to  do except starve myself. In the last 
10
>> days
>>>  I
>>>>>>>>>> have eaten either nothing at  all, including juice or glucerna or
when
>>  I
>>>>>>>>>> have had a single Glucerna, I  stop losing weight. I have lost  
some
>>>>>>>>>> weight but I am stuck and I  have gained 2 lbs back from 
drinking  1
>>>>>>>>>> Glucerna a day the last 2 days.  Honestly, I am contemplating 
taking
>>>  meth
>>>>>>>>>> to lose weight, and I abhor  drugs.
>>>>>>>>>>
>>>>>>>>>>  On top of it all, I am quickly losing my vision. I can't even 
read  a
>>>>>>>>>> book. My CDE gave me two  paperbacks and I told her I couldn't 
read
>>  them
>>>>>>>>>> and she insisted that my  vision will fluctuate and I will be 
able  to
>>>>>>>>>> read them. I was so upset  tonight I tore up one of those books. 
I
>>  would
>>>>>>>>>> have never done that ever  before. I value books.
>>>>>>>>>> I know this  sounds drastic but I am going to die if I don't do
>>>  something
>>>>>>>>>> and dr's wont help me. I  have switched drs many times and I get 
this
>    >>>>>>>>> same attitude from all of them. Either  doctors are too 
ignorant
>  and/or
>>>>>>>>>> lazy to see if something is  wrong with me that is out of my 
control,
>>  or
>>>>>>>>>> something is essentially wrong  with me and I don't deserve to be
>>>  treated
>>>>>>>>>> and to  live.
>>>>>>>>>>
>  >>>>>>>>> I am just stuck between a rock and a hard  place and I need 
help and
>  no
>>>>>>>>>> one will help me. I really  don't want to  die.
>>>>>>>>>>
>    >>>>>>>>> Again, not looking for judgement.  Reasonable advice will be
>  considered
>>>>>>>>>> but please keep in mind  I have multiple extremely complicated  
things
>>>>>>>>>> going  on.
>>>>>>>>>>
>>>>>>>>>>  Louree
>>>>>>>>>>  .
>>>>>>>>>> Follow us at  https://www.twitter.com/insulinpumpers
>>>>>>>>>>  Make a long URL short at  http://type1.org
>>>>>>>>>  .
>>>>>>>>> Follow us at  https://www.twitter.com/insulinpumpers
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>>>>>>>>  .
>>>>>>>> Follow us at  https://www.twitter.com/insulinpumpers
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>>>>>>>  .
>>>>>>> Follow us at  https://www.twitter.com/insulinpumpers
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>>>>>>  .
>>>>>> Follow us at  https://www.twitter.com/insulinpumpers
>>>>>> Make a long  URL short at http://type1.org
>>>>>  .
>>>>> Follow us at  https://www.twitter.com/insulinpumpers
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>>>> .
>>>> Follow us  at https://www.twitter.com/insulinpumpers
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>>> .
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>> .
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