I had it, I < > take it anymore ... re: my doctors that is ... Angry Vent

[Guest guest]

Hi all,

I sit here alone and yesterday finally reached the end of my rope. I declared

to myself that I < > take it anymore. If I take enough BP meds to

lower my BP I cannot function mentally. I took two normally spaced out doses of

Norvasc. My BP became worse for a while [Expected atypical reaction for me] but

I am better with BP spike control. But, then, my low BP was so bad I had

terrible headaches. My brain actually hurt plus the back of my neck. Then the

blurred vision started so bad that I could not see to use the PC. Double vision

with one eye even. Or, my vascular macular degeneration was flaring up.

A few of my doctors had agreed this year I am better off without my BP meds.

My blood vessels are already dilated and stretchy enough -- from birth. They

say I have atypical reaction to many meds or the opposite reaction. So, my one

kidney stopped working yesterday, I was in pain, my feet hurt and I thought I

was going to die. Needless to say I am going back to NOT taking the Norvasc.

My normal meds is to watch out for impaction of the GI and take my higher

level of potassium, liquid vitamins, distilled water, juice etc. MY new soymilk

drink I believed caused some of my last two weeks GI reactions. So, I am cutting

back on it. With two colons I cannot afford to be impacted.

However, the Norvasc did it job. I was clear minded to concentrated enough to

get the first seven of many faxes out to my doctors. I came straight to the

point with what I have been trying to tell doctors for the last 19 years. That

I am, well different. The big change is I can now say what diagnoses I do

have. Plus, I am telling them, as of yesterday, what I believe I have in total.

I

truly feel the doctors need to see the full picture of ME not part of it. They

need to consider all of my symptoms and they must then conference together to

figure out ME :-(.

Here is MHO of what I have. There is first of all the EDS, unilateral renal

agenesis -- no right kidney. I got a left side floating kidney AND left side

cloaca (my opinion but this body part has been seen by the recto-surgeon

specialist. He thinks it is a fully formed second rectum. I am telling him

{yesterday

via my fax} that it is more likely a primitive cloaca in the undeveloped

colon duplication. I also have hydroureter or megaureter, megacolon, tube colon

duplication, diverticulosis, another colon duplication or large diverticulosis,

malignant hypertension, severe hypotension, macular degeneration. I had four

major abdominal surgeries so I have mucho adhesions, I do have anxiety and

major depression from all of this, not to mention I am grieving. I will be

better

after the move. I cannot work, I am on an SSD fixed income, I have a great

social worker, I got a new RN who met me and who continues to be amazed at me.

But, I still have no home assistance. Oh, the indifference to pain or

insensitivity to pain thing, the Dysautonomia, having to worry about biting my

own

cheeks in my sleep, severe allergies to yellow #5, levoscoliosis, anal atresia

on

the left anus, vagina duplication suspected by my recto colon surgeon, being

diagnosed with ventral Incisional hernia with intestinal loop, got history of

intestinal excoriations that were operated on in 1990, was told a few months ago

that If I do rupture I will not feel it, transient aphasia with BP of 300/200

AND low BP of 40/20. I am beginning to hate me. Not to mention feeling like

WHY am I here or still here.

In other words, I CANNOT TAKE IT ANYMORE. I have rare BP crisis where I am

screaming ... silently. I feel the need to scream in pain ... but the sensation

I cannot say is pain. Nerve pain. I even cry. Not to mention having reflex

tears because of a bladder spasm is weird anyway. So, the doctors ignore me.

They

said to come back when it hurts.

So, I decided to communicate with all my past and present doctors. The same

letter to EVERYONE. I am stating that I wish to be checked for a persistent

cloaca. To this I am adding to be checked for Vater symptoms or VACTERL

association. Hey, I have all the missing body parts or extra body parts. I do

not

really seem to fit the picture of a DES daughter but I am of that age group.

Given

all of the above no wonder I could not have children.

The way I see it, we are talking about multiple MILD anomalies and all of

mine is in the duplicate area. The persistent cloaca and the anal atresia. All

this which would have been life treating meant nothing if I did not have a SPARE

:-). The duplicate area is under soft EDS skin. Any opening or fistula that

should have raised attention is covered. Any fistula too small in me stretched.

So, the whole thing makes sense ... when you read about all of my problems.

I accept that this many anomalies is amazing but not in the Vacterl syndrome.

When you give that person a double GI and no pain sensation in those parts ...

it sounds like me.

OTHER: With no one to cook for, that is okay. But I have low appetite and

forget to eat. When I cook I burn the food if I am not careful. What with my

gross STM and ADD. So, the meals-on-wheels is good to have. I am losing weight

and

clothes size. I look skinny for a time until I EDS bloat. Weird, but this has

occurred my whole life. It is just so noticeable now. I truly, NEVER expected

to EVER be small again. I was wearing donated size 16 stretch pants today. A

friend took me out to get moving boxes and I kept almost losing the pants --

when my bloat went down. Okay, I am reading for size 14 or 12 I supposed. The

weight loss is so noticeable that I had to ask my friend if I look sickly. I

should mention with my new knowledge and control of the two colons I am going

back to my skinny as a rail shape of 20 to 30 years ago.

< > So, this is the

fax I am sending to all my medical people. I must say. It is not that I expect

to be cured. Just for the them to acknowledge that I do exist. After what

happened to Bill I also want to confirm that I do not have any colon cancer. I

read that there is a type of cancer that is rare in colon duplications. The

duplication type they think I have but I want to be sure. After that, I will sit

and just be me. Researching and surfing the net. Thank you for reading. Caro.