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Re: [IP] Frustrated, need to vent!



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
>>>>>>> .
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