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RE: [IP] Frustrated, need to vent!



My word! I'm no expert but I can't imagine how in the world you could get
your diabetes and other problems under control until that adrenal tumor is
dealt with. Fluctuating Cortisal levels would totally screw up your control,
your weight, blood pressure and all of that stuff. Man, mega sympathies on
this one. I don't understand why so many of these doctors engage in the
blame game when things get just a little bit tough for them. Back in the
90's my husband and I were really ill and got sent to psychologists. It
turned out to be Q fever. My dogs get quicker and more thorough care for
sure. 
And the way our system works, once you get that psychology label, it's hard
to get taken seriously. But please don't stop trying. I wish I could tell
you who to contact in order to find someone who could take charge of you,
the whole person. It's really hard when everything is so compartmentalized
as it is. And that person's response to your vision concerns borders on
negligent in my opinion. But try and keep a note by your bed that says
something like, I'm worth getting help. I'm worth fixing. That's what I'd
tell you were I sitting with you. I'm sure you are. But I'd likely start
with the tumor. If you fix that, I bet you'd lose weight. Even if you have
to get dramatic or throw a fit in someone's office, go for it! And you can
tell them I told you to do it. <grin>
Please please don't quit. It shouldn't be this hard, it really shouldn't.
But we're all stuck advocating for ourselves. I know that place of reaching
out to so many places you don't know what to say to whom. I'd pick one
thing, the tumor and start there. And be a very squeaky wheel.
In the meantime, please accept my e-hug and I'll keep you in my thoughts and
prayers.
Veronica


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Phone: 831-429-6407



-----Original Message-----
From: email @ redacted
[mailto:email @ redacted] On Behalf Of SomeoneSomewhere
Sent: Saturday, January 25, 2014 2:36 AM
To: email @ redacted
Subject: [IP] Frustrated, need to vent!

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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