Burned up the phones today

[navydad]

First I called the immuno ,, reason being my Rheummy was leaving it up to my immuno to decide if I need more IVIG,, so I get him on the phone,, and after telling him I am growing weird bacterial infections,, he says,, can you get me the lab results,, I told him i would call,, but what about the IVIG,, he said thats up to your rheummy,, wait a minute,, were not going down that road buster,, so he says,, you can set u a date for infusion,, WHAT,, like Im a doctor and can just call them up and tell them to mix me up a batch,, SIGH, so I call the ENT,, they hopefully faxed over hte results,to the immuno, meanwhile Immuno calls,, says we may have to relook at your immune system,, with the strange bacteria your growing in your sinus,, if he only knew what i;m blowing out of my sinus day and night,, I wont even try to describe it,, but I have went so far to take some in a baggie to the ENT befoe,, so anyway,, I talk to the rheummy again,, I tell them well immuno is sending the ball back into your court,, So I ask about the lyrica,, they tell me,, oh,, tha was just a one time shot from the rheummy,, you need to talk to the neuro guy and see if he will refill it,, right now i;m out 100 bucks for a antibiotic that i;m shooting up my nostril twice a day,, and theres a refill on it,, ,, my insurnce only covered lyrica as a one shot deal, I swear I have celiac now,, anything I eat just makes noise in my stomach,, I choke on it,, gas constatnly,, abdomen pain like you wouldnt believe,, and I dont see the gastro for another 10 days, then it will be a round of blood work,, then the wait,, ,, I hav to wonder how many peole died waiting for things to happen,, Just had to vent,,, sorry

[Epson]

Dude, you have to chill, his is how this species operates, they are are trying to make your head implode, I go through this all the time.  The more you get worked up the worse your stomach gets.  I've even the cops called on me when dealing with idiots and I didn't make any threats and I don't think they can read my mind.

All red face with veins popping frightens some people, but you can only be jacked around so long before you go postal and unfortunately you wined up taking years off your life.  Any time I have to deal with the medical profession I expect the worst, that way I won't be disappointed.   

[JannaLee]

Epson,

You are a scream!

I wish I had been there when the cops came to see your red face and popping veins!

Navydad,

It is harder now days because YOU have to be the one to call because of privacy laws and the docs never call back or their office closes early the day you try and if you work full time there just isn't enough time in a day to get thru to all these yo yo's and also deal with the insurance (those people are all probably going to heck.)

Anyhow...I send piles of empathy to you both and to the rest of us.

Janna

[irish]

navydad, I would bet that your stomach is in a mess from taking the antibiotics and from swallowing that rotten infected sinus drainage. Try eating yogurt with the live bacillus in it(read the containers) and if you don't like yogurt you can buy Lactinex tablets at the pharmacy. Just ask the pharmacist as they are stored in the refrigerator. Ask him how many to take.

Like Epson says, it is just part of the whole crazy world these days when it comes to dealing with docs and phones. I get so that if I hear one more canned message I will scream. I have to make notes sometimes to keep track of who I am supposed to call about what. Then when the docs don't send their documentation to the other doctors(after I have signed the release forms) I get really bummed.

I am curious why you can't make an appt for your IVIG. I have had a script written by my doc and they have had it approved by medicare. They called and set up my first appointment which was 2 days of 80 grams each day and I go once a month now. When I am getting my infusion I just set up my appointment for the next infusion one month later. Do you have to get yours approved every month or something???

Also, the doctor who wrote the script or set up the infusions is the one to be in charge of it. HOpefully he is getting reports and checks with you to see how you are doing or responding to the product. With all the infections you have had it may help to see an Infectious disease doc. I have had to see one many times. They are very good at what they do. They know all the antibiotics and what works best for what disease etc. Might be worth the money. I know it is another doctor but this illness sort of wanes and ebbs. Sometimes we just have to see more specialists and then things settle down for a while.

I have times when I just block out the fact that I have to call doctors and will put it off for a couple days and just enjoy the peace. Then comes the time to get the tablet, pen, cup of coffee,phone, put my feet up on a stool and start dialing. I have spent hours and I mean hours on the phone taking care of medical issues for both hubby and myself. The pay is lousy also.   Irish

[navydad]

it wouldnt be so bad if i didnt ave to work with all this going on and trying to make doctor appts. I try to educate my famly about this,but its hard when dad doesnt look so sick, epson,, thanks for the reality check,, i havent gone postal yet,, but I have bought some stamps,, I migth be on my way of going postal,,

[JannaLee]

Navydad,

Even when you feel awful you are so funny!

My frustration level has not brought me to the point of buying stamps yet....but I'm sure my day will come!

[beverley]

Guys you make me grateful I am in England.  Our medical system is becoming more complicated but it sounds no way as bad as yours.  However, I have noticed a trend of Doctors here to say 'what do you think?'  I often wonder if I ought to cram a medical degree in in my spare time so that I can give them informed answers.

One of the things we rely on is someone with more knowledge taking control of certain aspects of our diagnosis and treatment so, Navydad, you are bound to feel a bit lost and frustrated by the lack of medical lead.  But you know everyone else is right, it's about staying calm, perhaps keeping a log of who you spoke to and when.  A simple grid would do with columns marked date, contact, action.  This might help you feel you have the ultimate overview of what is going on.  I'm afraid categorizing and filing is my retreat when I feel I'm making no headway, but it can make you feel a lot calmer when you have a clear picture, even if you have no control over what happens next.

I really hope things start to fall in place soon for you - and as for that 'I don't look sick' comment - well you're right, it's a bummer and it makes keeping people on your side really hard.

Thinking of you.
Beverley