Day Six an Symptoms Start Back

Today is Sunday morning and I went to church.  I had to sit outside with the crying babies because I suddenly found that I had the need to be very, very near a bathroom.  It's only been less than a week and the symptoms I've been dreading are starting back.

It all started last night when I got stressed about something, and I felt the old familiar flush come back I've not felt in a while.  Let me describe how this feels to you.  First, you feel dizzy and feel the need to sit down - disorientation follows quickly and sometimes my vision kinds of goes sideways and I have to either sit down or fall.  During this time, it feels like I'm not inside of my body, but someone watching this happen.  Then I feel a rising heat on my face and as it progresses I can see whomever I'm talking to noticing and they always ask "are you having an attack?"  Sitting down makes me feel better, but I can feel my eyeballs are red and I can feel the heat rising out of my face from the flush.  I can usually get it to stop by simply stopping what I'm doing.  So I sit and rest until I'm better, usually takes about 10 to 15 minutes, less if I happen to have a rescue shot with me - then it's about 10 or less.

I know now the hormones are released in my body.  Seratonin is the main hormone and it causes my blood vessels to POP open and this is what causes the flushing.  My heart pounds along with it and sometimes I wheeze, all symptoms something is wrong.  Oh, if I just had the correct amount of Octreotide in my blood stream - this would not be something I suffer from.

Next is the fatigue.  So tired, I cannot even keep my eyes open.  Sometimes I fall asleep where I'm sitting.

Now for the really nasty part.  (Parents of small children, please have them leave the room because what I'm going to describe here is really nasty, but there is just no other way.)  Have you ever had the worst flu of all time and had that time you have diarrhea, the trots, the runs, you know - the stuff that when it goes into the toilet it sounds more like liquid than a solid?  That is how I feel.

First, it starts with what I can only describe as a cauldron of bubbling liquid in my stomach region.  The bubbling gets worse and worse and I feel pressure grow.  By this time, I'm looking for a bathroom because there is no holding back what is soon going to be very unpleasant and painful as time passes.  The pressure builds and builds and soon I find myself running for what I lovingly call my own porcelin throne - of which I rule all I can survey.  All I can see is the bathroom.  Then it hits.  It feels like someone is grabbing my guts as part of a strong man competition and wringing them out as hard as he can.  All I can say is at this point I'm closing my eyes and praying for relief as the stuff literally explodes out.  When I say explodes, I mean explodes.   When the jet of what comes out of my nether region hits the water, it throw water back into the air.  Usually this takes place without effort, it's more of like unstopping a bottle of pop after you shake it up.  Remember when we used to shake up cans of pop and open them, this is a bit of what it is like - it is just a force - old faithful has nothing on me.

After the instance is over, I feel relief and depending on what or how many other problems creep in.  You see, the liquid contains a high concentration of something like acid that is really really hard on the skin around the areas the liquid comes out.  I think is is similar in nature to what babies get when they have diaper rash, maybe we should call it Carcinoid Rash?  My own person relief is to never never never touch anything, but to use water as a source of cleansing and relaxation for the affected area and this seems to help.  I have found other concoctions used in baby relief of diaper rash to be comforting as well.

So, today, I've experienced this five times.  I'm starting to get sore, and so I've got to figure out a way to keep the area clear of the outflowing stuff and clean of it as well as provide soothing comfort.  Sometimes I have to take a wet paper towel and fold it and strategically place it to provide relief.

All of this because I cannot get the medication I need.  Do you know when I was talking with a doctor the other day about this issue, she related to me she used to actually see people die of loss of bodily fluid through diarrhea.  She was terrified of going back to these days.  She was also reminded of the many who died of heart problems, because the hormones we secrete can cause heart problems - the most common the wearing out of a heart valve.

So my questions for Medicare are this:

What is the price of human suffering?

What is the price of allowing people to die of something we have a treatment for?

I've been told, that Medicare is not preventing people from getting the meds, they just are not paying for it.  What is the difference here?  Do you have an extra $50 grand laying around to throw at medications.

I am sad, reader, I'm sad that this is happening. I'm sad because others who have insurance through work are having no problems.  I'm sad that someone who is in a position of power and is probably compensated for saving money, is willing to kill people to save what will amount to nothing in the end.

Mr. person who recommended this approach, what savings are you going to realize when:

1. More Carcinoid Patients end up in emergency rooms with problems the drug could have prevented?  I will bet there is vastly more money spent on emergencies than would be on prevention.
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2. More tests are run which are not necessary when the clinical results from the doctor and patient align with the correct dose.  Hormone testing is expensive, I'll be just as expensive for an Octreotide level blood test as what any savings will be.

3. What is the value to the suffering you are going to inflict on the population? 

4. The is the value to the lives this policy is going to cost?

Personally, I really don't know how anyone who tries to justify this can even look themselves in the mirror.  We were told that Healthcare was something that was not going to allow for anything to stand in between us and our doctors.  Seems like this is EXACTLY what is going on.

Please, I'm asking for help.  If you are a person on an expensive treatment, it will not be long until decisions like this will start happening to you.  We need to stand in solidarity and show this nameless and faceless organization that there are people willing to fight for what is right.

Help us by sending a note to congress or senate.  Your support would be appreciated and the next life you save may very well be not mine, but yours as well.