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View Full Version : I AM WORKING FULL TIME NOW! Anyone else?


Kara29
11-04-2006, 11:41 AM
I started to think I was a loser because I lost my career to IC but the longer I thought about it, I got to thinking how hard it is to have IC. I decided that it's 10 times harder than any career, job, or college I have ever had to attend. So, I feel like there needs to be a new Career out there called THE FULL TIME CAREER OF IC.

I started to think about all of the things I do, sometimes in just one day to get myself help, just to live pain free. I didn't know where to post this but I thought maybe the Pain Management People would appreciate it.I'm sure we can ALL relate though! These things that you will read have all been done while suffering in severe pain. None of this would have been possible to do if I had a real job. One reason to thank GOD for making disability because it's people like us who appreciate it! Feel free to add your niches in this full time career.

I just started this list and I'm sure others of you will have much more to add as some of you have other jobs and children and sick family members besides yourself.........

Just to make a phone call to your Doctor

•Calling ONE doctors office or just the one you need help from weather it be a Urologist or Pain Management Specialist or any other Doctor you are trying to reach when you are REALLY SICK, sometimes with a raging infection and fever
•Being put on hold because five other callers are first in line (by the time they get back to you, you could have called 911 and had an ambulance at your door)
• Waiting all day at home for them to call back, even after you call them to remind them you are waiting for a call from just the first step which is the nurse only, not the doctor and if you have to go somewhere making sure your cell phone is turned on and recharged so you don’t miss the call. Having to pull over when they call. Trying to explain things NOT to the doctor but to the nurse or worse, just a secretary, or someone on call that does not know you or doesn’t have your chart and then they say they have to talk to the doctor anyway.
•Trying to explain your complicated situation to a nurse that doesn’t know anything about you and then STILL having to wait for the doctor to call you back.
•Or having to leave a message with the secretary even though you have mentioned that it’s something you’d rather not discuss with her/him
•When they forget to call back you have to call them again by that time the office has closed and they won’t have your chart when calling back to know who you are and what you’ve had done and your allergies.
•If they do call you back you still can’t talk to the doctor and have to explain to the nurse your WHOLE situation all over again and they ask a million questions when the doctor knows it all because he knows you better.
•If you are lucky enough to have the doctor call you back he spends 2 minutes on the phone with you after you did all of that talking and waiting to get to him.
•Waiting for the next day to come and you start all over again.

To get records transferred

•In NYS they have this new thing now where they won’t accept the copy of your own records, you have to get all of your records transferred from the doctor office to the doctor you want to see. This can take weeks. They won’t make an appointment to see you unless they have all of your records from all of your doctors. And this is just to see one new doctor. You have to do this for each new doctor you want to see. So then you have to make a million phone calls to all of your old doctors.
•First you have to call each former doctor and ask them how they want the records transferred; every doctor’s office does this differently. Then you have to get their fax number, and address. Some of them will fax and some refuse and do it only by mail.
•Then you have to write a records of release form your self if you are not near the doctors office or can’t make it there. They say they can mail you one but again that would take a week to get it, fill it out, and then send it back, which could mean another week, and then you have to have faith that they will send the records out immediately. Most places have to have the doctor pull out the records he wants sent. So now this means you have to wait for the doctor to have time to do this and we all know how busy they are. This could take another several days.
•The Records of Release Letter Your Full Name and Address and Phone Number and Alternate Phone Number, Birth Date and Social Security Number, The name of the Clinic you are requesting your records from, the Doctor’s Name, address, phone number and fax number. Sometimes this is not easy, as you may not remember the phone numbers and some of them won’t list a fax number, so again you have to pick up the phone and call for it. Then you have to put the current date on there. Address to whom will be releasing the records. Make up a paragraph about what you need. For example, I, Joe Shmo, Date of Birth, Social Security Number, give authorization for the (Blank Pain Center) to release/fax all of my medical records, to the (New Doctor) Include any special requests that this new doctor has asked for in the records like operative reports, tests, and or x-rays and films. Then under that you have to put the new doctor’s name, his practice or specialty name, address, phone number, and fax number. At the bottom you have to again say that you are giving them written permission to fax or send all and any relevant medical records to this new doctor. Then I like to include the fax number in bold one more time for them because there are so many numbers on this letter anyway. Then you have to sign off with Sincerely, Joe Shmo. Again this is for just ONE of your old doctors, you still have to do this with all of the others and each one does it differently, so you have to call them and start the process all over again. This makes for a LOT of phone calls going back and forth. You have to write up a new letter each time, so if this new doctor wants records from 6 of your previous doctors, then you have to write out 6 individual letters that are all different. Then you have to save them all, spell check them, print them. After printing them, you have to look it over and sign it and put the date by your signature.

Faxing the Release of Records Letter

•Faxing these letters After you have tired yourself out enough with all of that, you have to fax this release letter to all of the old doctors that the new doctor is requesting. If you have a fax machine at home this helps out a LOT. If not that is another situation in and of itself. You have to make sure you are dialing the correct fax number for the previous doctor and not the new one. Wait for it to go through. Sometimes this can take awhile if their fax line is busy. Once it goes through then you have to do this for the next several doctors that records need to come from. So in my case I did this 6 times. Now at my house, I did not have a fax machine that was working properly, so I had to get up and go to a store that has a fax machine. I go to UPS. Once you are there and while you are suffering in pain this whole time, you have to fill out their UPS cover letter with almost all of the information that you had written in your letter. Who its gong to, the fax number, the date, number of pages, who it’s from (you), your phone number and alternate number, and the subject of the fax which would be release of records. Then you have to do this for all of your letters. In my case it was 6. Then you have to stand their and wait for each one to go through and some of them don’t go through right away. Once they go through you get a confirmation sheet that it went through, which is good. Then you have to pay for them all. Then you still have to hope and pray that the secretary there does his/her job and gives this to the doctor to review. This still could take a few days to a week before you can make your appointment with the new doctor. The whole process starts all over again if you want to see another doctor. And with my insurance you don’t need referrals either, but I have to do all of this anyway.

Waiting

•Waiting for an appointment: You have to wait for all of those records to be transferred which can take weeks. Then you have to wait for them to call you because they don’t like it when you keep calling them. So you wait and wait while you are suffering in pain. Then you get a call saying they will make you a consult appointment or if your lucky, just a regular appointment. But to your surprise the appointment is 2-3 months away or more. You ask to be put on a cancellation list. So then you wait for the appointment. You get excited the day of the appointment thinking you may get some help, You have all of your questions prepared and some people like myself, will bring a list of my current meds, allergies and all of the medications that I have tried in the past, as well as all of the surgeries and the dates, so the doctor doesn’t have to sift through all of your piled up records that could fit into a binder. Oh and by the way, this is ALL just for a CONSULT and some times the doctor in the end will say he can’t help you, AFTER all of the hard work you did to get to come and see him. Some of these appointments are out of state and some people have to make travel arrangements, hotel accommodations, and food. Then you have to drive back home and some of us cant not travel and plane tickets for yourself and another person to go with you can become expensive if you are on disability and have no money to throw around. After the consult appointment with the new doctor, sometimes you have to wait until he reviews your records again. He tells you to go home and he will call you if he wants to take your case. So you wait and wait and wait, wondering what this doctor is thinking about you, and then he calls you to come back in for more testing and or surgery, so you have to travel all over again.
•This whole process will repeat itself each time you want to see a new doctor and you are as sick as I am. I can’t tell you how many times I’ve had to do this.

I just wish I could get paid for this! :rolleyes:

Feel free to reply with your own duties as having the FULL TIME CAREER of IC......

Kara:toilet:

Katrina
11-04-2006, 12:43 PM
Great post!!

parts of my job (note my job isn't just IC): (that I don't think you listed lol)


following a strict schedule of meds and eating and drinking....I need one med to tolerate the other....I need the food, drink or whatever to make the pill either tolerable to dissolve right

keeping a diary of my symptoms for my doctor...lol boy what a laugh so many symptoms!


Filling out the forms of my medical history...trying to find the dates of all my surgeries as I deal with exhaustion of just thinking about it all


research all I can on my new doctor and my symptoms because no way do I want a start a relationship with a doctor seeming uninformed. First impressions are big and since I am definitely going to research later and want some respect for my knowledge lets start that way too


research on the conditions I already have and treatments that would be easier on me! (this of course is a never ending process)

ICLori
11-04-2006, 01:39 PM
OMG - Kara! Oh man, you need a secretary working for you to do all that stuff so you can just rest! :(

Can't think of anything to add to the list. I guess spending nights when I can't sleep surfing the internet looking for some little shred of hope, some new research, something.

Blessings,
Lori

catlover2
11-04-2006, 02:20 PM
Thanks for the great posts. I love the humor. Everyone in a bad flare should read this. I know that I feel better after reading them. :bow:

dancemomof2
11-04-2006, 02:32 PM
YOu said it Kara, keeping track of IC is a head on full time job and we need a personal assistant to keep up with our daily life.

From now on I will hire Kara to do my paper work trail I have to gather for this dr or that nurse. At least I know a professional at this now.

I love your post

Emma's Mommy
11-04-2006, 02:53 PM
i must say i agree with Kara that this IS A FULL TIME JOB.....

how about when you randomly get a flare up when your OUT in PUBLIC....ya know heaven forbid we leave our "office" (home).....and the pain hits ya all of a sudden like a dump truck and you just break out into a cold sweat....

or get stuck in a public bathroom for what seems like hours.....

Mel53H
11-04-2006, 05:27 PM
Gosh! With all the work you have done, you could have been a millionare by now!!

LizGrirl
11-04-2006, 06:19 PM
I got one for ya! Not an exageration... only I think I rounded down on the number of pharmacies that I called.

Calling 15 pharmacies in the area just to find one (all of the same chain mind you) that can fill my perscreption on a Control 2 substance. (Note: They don't like giving information like that over the phone. I think it is some law or unspoken rule that there should be no phone conversations regarding any control 2 substances. So it's like pulling teeth.)

Driving 15 minutes to a Walgreens only to drop off said perscription. Wait 45 minutes for them to fill it. Another 20 to find out that they misunderstood and don't have the medicine that you needed.

Calling another 15 pharmacies for the same perscription (because it would take the lady behind the counter too long).

Driving... get this... an hour to another pharmacy to get the same perscription filled that you were originally trying to get filled but couldn't get filled because someone can't count above 15.

Waiting an hour and a half to get said perscription filled.

Driving back home, much relieved and totally exhausted from dealing with the pharmacy, for an hour and 45 minutes. (The extra 30 minutes is from rush hour traffic. :headbang: )

Katrina
11-04-2006, 07:23 PM
lol Leslie....hire Kara the professional, sounds like a great idea :)

evanseri
11-04-2006, 11:52 PM
ICLori,
Your post about spending sleepless nights on the internet looking for some kind of hope really sounds familiar. I have done the same thing myself countless nights, it is actually how I found this site (the only good thing that has come of my sleepless nights!) :) I am sure that we are not alone in our quest to find something that will bring some much needed relief. Will they just hurry up and find a cure already! I just read that 1 out of every 10 women may have IC. I bet if it was 1 out of ten men a cure would have been found years ago. Sorry to rant, just really sick of this stupid disease. Hope you all are feeling well, or at least better than usual.
:) Erin

Bianchi
11-05-2006, 01:50 PM
Great post, Kara.
Bianchi:smile tee

Sarojini
11-05-2006, 02:53 PM
Great post, Kara... I am at a conference out of town right now (hotel provides internet) and I am sure realizing what doing this like with IC.... the plane ride (nasty), the seminars (falling asleep due to meds), the people saying "You look spaced out" (uhhhhhh.... ya, you would too if you were on what I'm on JUST TO F%&*ING BE HERE)....

AAAAAARRRGH

And of course, that doesn't include the INCESSANT peeing....

ihurttoo
11-06-2006, 02:03 AM
Great post, Kara!! How true it is!! I only have a few more to add:

1) After doing all of the above to get an appt with a new Dr, THEN, you must convince him/her that you are not in all actuality a freak in order for them to take you on as a patient. (Like my pain clinic who has no other IC patients and wondered aloud at my first visit "if the pain of IC could really bethatbad!"

2) Then, after doing everything in the above posts, and finally getting them to agree to take you on, you still have to come on here and do their research for them to know HOW to treat you.

3) After you have done the research to find out what works for others, then you have to convince them to let you try it too, and that you are in fact in pain. (This process alone sometimes takes months to years!)

4) After the months to years pass, you finally get them agree to let you try something, (my most recent example of this: my case rescue instills at home), and then you have to convince someone else's Dr. (from here) to call your Dr., to tell them it is true, that others do these at home!

5) Once the above Dr. is FINALLY convinced that you have no ulterior motive and get no secret thrill out of cathing yourself daily, then you have to call the pharmacist yourself to have him call the Dr to tell him how to write the script b/c he doesnt know how and says he would let you, if only he knew how to write a script. (And since you are his only patient who will be doing this, this also further reinforces that you are some kind of a freak!) So, the pharmacist figures it out and says he can get the supplies for you....all except the caths and syringes, which you will have to get elsewhere.

6) Next, you discover that there is NOWHERE in your town that sells caths except the one pharmacy you told off when they called your DMD and told him not to treat your pain after dental surgery b/c you are already on other meds, (which the DMD already knew!) But, the DMD being freaked out after a call like that wouldnt help you!!) So, you had told off this pharmacy which is now the only one in town that can help you. So, you must eat crow and go back and ask them to get the caths for you, because after all you are a cathing addict who just loves to stick tubes in herself, I mean WHY ELSE would you want to do this??!!!

7) Pharmacy cant get your size after all, and has never heard of anyone wanting to do this either, (Further reinforcing your freak status.) They say they will have to call your Dr. to see what alternative size caths they suggest. It takes WEEKS to get these in, while you wait and suffer more.

8) In the meantime, you come down with the worst stomach virus you have ever had, N+V+ Diarrhea, high temp, chills, you name it. You are deathly sick, and naturally it is the weekend. Knowing better than to go to the ER, and since the Urgent Care is closed, (and you are too sick to sit there anyway!), you call one of your Drs who has seen you 2X a week for these instills for the past 5 years, thinking he might be compassionate enough to call you in some Phenegrin. (You know it is viral b/c your son and husband have also had it and your son's bloodwork was checked for bacterial infections and it wasnt. Your symptoms began the day after his. The Dr. rips you a new one on the phone and makes you feel 2" tall. But, he (VERY HATEFULLY and VERY BEGRUDGINGLY) calls you in some Phenegrin.

9) YOu and the rest of your family are too sick to go get it. You call your Mom and ask her to get it for you.

10) While you wait for the Phenegrin to kick in, you alternate praying for yourself, and then for that Dr. to get struck with the same Virus and for no one to help him! (But you full well know that you would never be that lucky! One of his Dr buddies would help him in a NY minute!! Nope! No suffering for him! And no berating for him!

11) The vomiting and diarrhea, and fever, set off your IC symptoms, now you go to the toilet to do one of THREE things! Also, the bladder pain kicks into high gear!

12) With the other pain, and the fever, the fibro pain increases tenfold. But every time you take anything, it just makes you sicker and then you throw up.

13) You have an appt today with the aforementioned "Sensitive" Dr who berated you last nite. You will have to be nice, no matter what you WANT to say, b/c he is the only one in your town who even believes in IC! (You secretly plan to breathe on anything he might touch, and pray nature takes it's course with him and he comes out of it with a bit more sympathy for sick people!) :)

****Sorry this was so long!! Arent you glad I didnt have much to say??!! LOL!***********

Katrina
11-06-2006, 07:31 AM
lol
Amy you are right on the money here!
Yes, always researching to find the answer and than convincing my doctor I know what I am talking about....now some I am winning the game with but it just delays the process because having a doctor that trusts I may be right is great but he wants to look into it and varify it so .........well that means more waiting!!!!!

yes getting my meds means making sure someone else can go get them for me....so that means reminding, reminding, and trying to make sure that all the things I need a person to do for me are possible to get done in the time needed that they have to spare. It is frustrating when someone elses schedule is how things happen in my life...appointments, picking things up, everything.

(((((((((Kara))))))))))

armslee
11-06-2006, 09:53 AM
This is really an inspirational thread!

I would like to add that somehow we have to pay for said doctor appts and said drugs. So maniacs like myself are forced to continue to work not one full time job, but 2 part time jobs as well just so that I can continue to be behind on my bills, have the creditcard companies call me wanting to know why I am behind on my payments, falling asleep at work from exhaustion of IC/meds/lack of sleep etc.
Still cannot figure out how to pay for all of my prescriptions so I start to pick and choose the ones that work because even though I can't pay my bills/doctor bills and med bills each month, I am not apparently poor enough to qualify for public assistance sooooooooo
I continue to work 3 jobs with IC and eat mountains of pain meds just to do so just so I can get up the next day and do it all over again.