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Re: [IP] Frustrated, need to vent!



I have been focusing on the tumor since last March. Although they found 
it a year ago last November when I was in the ICU with my blood sugar 
almost 700. (I found that in my records) Nobody told me until March. It 
took me until October for an actual blood test that showed my 
norepinephrine level is nearly 4x's the upper limits of normal, my 
dopamine was too low to test and my aldosterone was 1. Prior to that I 
had the same tests and my dopamine was low, my aldosterone was 26 with 
the cut off being 26 and my norepinephrine was right at the cusp of 
being over the normal limit. They ran more specialized tests to see if 
this tumor I have is a secreting hormone one and it came back normal. 
Mind you many of these tumors secrete sporadically. The surgeon who ran 
these tests is the one that sent a note to my pcp saying I was a nut 
case. I practically had to beg him to run more tests because he told me 
I was fine. I was told because of my weight and a1c I am a bad surgical 
candidate.

The Mayo Clinic Rochester, saw 38 of these tumors last year and only 800 
were diagnosed nationwide last year. It's probably you will never see 
one of these in your career kind of tumors.

I also see another dr he shares an office with thats a 
hematologist/oncologist, I have a blood issue. He (and my PCP) luckily 
is convinced something is wrong with my hormones. My plasma cortisol 
came out inconclusive since it wasnt drawn between 8 and 10 am or 4 and 
6 am. At 11:15 am mine was 2. It should be above 4.6 something at 10 and 
above 1.8 at 4. I am waiting for a 24 hour urine cortisol to come back. 
Your right, cortisol dysregulation will mess up your blood sugar 
tremendously. In the mean time, the hematologist, has set me up for a 
second opinion with a different endocrinologist next friday. My own 
endocrinologist is convinced its a will power problem.

I want to be able to prove to them that I am willing, I do care about my 
health and I am trying. I even quit smoking 7 weeks ago to help prove 
that point. I got a home blood pressure cuff and I have had it verified 
with the hematologist and my PCP that it is accurate.  I expected low 
blood pressure, which I have had in the past and I have found both low 
and very high blood pressure with changes in position. Sigh. That is my 
guess why exercising/getting out of bed is so difficult. Thankfully the 
cuff keeps records. I would ask to go back to the cardiologist I saw 2 
years ago for mild right and left sided heart regurgitation and 
borderline EKG's, but I don't need another cook in the kitchen right 
now, you know.

Yes, I am depressed if frustration counts as depressed. I spend more 
time crying worried that they wont figure out whats wrong with me before 
it kills me. I feel like I am dying, and I mean that literally not 
figuratively. It's frightening. I see a counselor that until today has 
been very supportive. Today I got an email from her saying that she 
doesnt like the choices I am making and that its bad for me and if I 
continue to make these choices it compromises our relationship.

Seems like I can't please anyone, even if I am doing what I think is 
best for my health when even they don't know what to do. Temporary 
malnutrition you can fix, dead you cant.

Louree


On 1/25/2014 2:27 PM, Veronica Elsea wrote:
> 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
>
>
> We woof you a Merry Christmas!
> Make the humans and dogs on your list really happy by giving them music from
> Veronica Elsea and The Guide Dog Glee Club at:
> http://www.laurelcreekmusic.com
>                  Veronica Elsea, Owner
> Laurel Creek Music Designs
> Santa Cruz, California
> 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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