Hi All,
Well...I have my follow-up appointment with Dr. Ding Dong tomorrow. It was supposed to be next Thursday but since I was in on Monday for an emergency visit, the RD that I saw wanted me to move up the appoinment. I'm very very very...did I mention very nervous about this appointment. I know I'm not doing myself any good worrying about what might happen but seriously, if I walk in there tomorrow and he doesn't remember me or know why I'm there again and still doesn't have my medical records with results from the 2-year study...I'm going to have a melt down!! I've been trying to get a list together of things that need to be covered so as not to forget anything since I know I will be emotional.
This is a sample of what I am working on:
1) Study Findings
2) X-rays vs bone scan & am I able to check them out of the office
3) Should I go back on MTX even though it makes me sick? What about home injections?
4) Assistance with Enbrel cost....programs he can help me with
5) Can he help me with any paperwork for a wheelchair through my insurance for the days I'm unable to walk
6) Why am I not responding to medications? Why is this disease so out of control? What can I do or what shouldn't I do?
7) Is there anything he can help me with as far as medical leave from my job until we get this disease under control.
I also have to ask him a question that is very important to me...that is IF he remembers me and why I am there. If it's a repeat of my last visit then this and all of the above just jumped out of a 13 story building and went splat. Anyway...I want to be able to ask this question seriously but respectfully ::drum roll:: The question is -- I can not do this on my own and I need to know that you are paying attention and that you are genuinely interested in helping and supporting me so that we can get this under control, hoping that we can achieve that. Also, as much as I hate that I will have to quit working and file for ssdi, I feel like it's the only option as I have exhausted all other options. I need to know that I have your support and things are documented very clearly in my record. You are one of the most intelligent doctors I have ever known however, if we can't be a team on this I am left with no other choice than to find someone that I can be a team with.
Okay so that's pretty much what I'm thinking but I it needs to be professional, respectful and clear. As always...thank you all and I welcome your feedback.
I know some of you are probably thinking I'm absolutely crazy for even giving this RD another chance but for whatever reason I do feel the need to give him ONE more as I have been seeing him for almost 3 years. I'm truly hoping it doesn't end in disappoinment. He really is intelligent...if he'll act like a human everything will be just fine.
Peace & Love...Neasy
Neasy, I am hoping your appointment works out for you. I am surprised that you are returning to him but I understand you havent had much time to look for a new doctor either.Good luck tomorrow on your appt. You have some great questions to ask and I hope this guy just had a bad day last time you saw him.
I really wondered why I was so out of control over the past fall/winter also. Part of mine was the hopping on and off my meds from being sick. Part of it was just the nature of the disease. I have heard of med resistant ra before too. And I really hope that isn't your case.
I am sorry that you have come to the point where you can no longer work. It is a hard decision to make. Until your ssdi comes thru do you have like long term disability thru your work? There is also FMLA but you are not paid when you take that. I had that when I was working to protect my job when there were those days I simply could not make it in. My husband has now as he is my caregiver when I am really down and out.
I know with my insurance in order for me to get a wheelchair that they will pay for I need a letter of medical necessity and prescription written for it.
I just got a whole big fancy shmancy packet on enbrel and not one thing in there if you need help paying for it. I am not on it but I am going to fill out one of the surveys that come with it in hopes that I can get some type of info on where to find help to pay for it or like with my advair (when I was on that) coupons to help pay for it. But you can always look here http://www.rheumatology.org/public/acrast.asp?aud=pat for some help with RA drugs.
You should be able to get copies of the results of any tests you want. That is your medical record and you have the right to anything in it that you want. Some offices do charge to make copies of what you want from it.
Good luck tomorrow and please let us know how your appt. went. I will be thinking of you and sending good vibes your way.
Thank you for the posts and thank you grammaskittles for the information...I've added to my list.
Peace & Love....Neasy
Have you considered trying antibiotic protocol therapy, since nothing else isNeasy, I understand how nervous you are about this appointment. Is there anyone who can go with you...a relative or friend? Sometimes it helps just to have someone there.
I think you've spelled out everything very clearly and respectfully. Are you going to bring notes with you? I number my questions too, so I can be sure I got through them all before the appt is over.
For Enbrel assistance, check out this page http://www.amgen.com/patients/assistance_enbrel.html
And as for the wheelchair, if you can't get it through your insurance, try looking on E-bay. I got my scooter there for about half what it would cost new, and it was barely used.
Good luck with the visit and let us know how it goes.
Good luck tomorrow!!! I go tomorrow too...but to my new RD...and I DEARLY hope she's better than the idiot I have been seeing...especially since I have left FIVE messages since monday, and haven't gotten a SINGLE call back!!! Stupid Drs!!
((hugs))) Neasy, hope all goes well tomorrow...Good Luck and God Bless.
ps
I think you are a great person and I sure hope you get some real help with this misery.
Thank you all very much...you're the best!
A few things I wanted to respond to:
grammaskittles...Thank you for elaborating on the FMLA, I appreciate the information. Knowledge is always a good thing.
Marian...You're very sweet. Thank you for your idea of letting them read the list. I'll be sure to omit the Dr. Ding Dong even if the name is well deserved thus far.
Gimpy-a-gogo...I've never tried antibiotic protocol therapy but I'm certainly not opposed to it. Thank you for the information and I will read more about it.
Joonie....
Innerglow...Unfortunately I don't have anyone to go with me tomorrow. I am taking my notes in hand. My insurance said they do cover wheelchairs as long as the RD writes a script and files medical necessity. I've sent them an e-mail regarding the co-pay or deductible. Thank you for your e-bay idea, if it's too high through insurance that may be the route to go.
MsMidge...Yes we DO deserve good appoinments my friend!! Good luck with yours and let us know how it goes. I hate to be pushy but I feel like that's how I'm going to have to be to get results. It's a darn shame.
I hope I didn't miss anyone...if I did, it wasn't intentional as appreciate each and every post.
Until tomorrows post...Will it be Dr. Ding Dong is FIRED or Dr. Ding Dong becomes Dr. I Am a Human Being After All?
Peace & Love...Neasy
Neasy, I have not been reading many posts but I wanted to wish you good luck. Your appt. was today I think? Looking forward to hearing how it went. I am so glad you are getting support from AI. You deserve it sweetie.Good luck Neasy!
Pip
I hope it went well for you!!! I know my rheumy charged an arm and a leg for each copy of x-ray that i wanted!!!I really want to give you all an update here as well as address a few other posts on the board. Unfortunately, I'm hurting a bit and very tired...wiped out in fact. I'm going to lie down and get some rest and will try to make it back here later in the evening.
Peace & Love...Neasy
I'm new to all this, so can't give much help!
But I hope everything went Ok today.
I hope everything went well---will check back to see if you've updated.I was very pleased at my appoinment yesterday!
I told him that I had decided to carry a check list with me and that I was very serious about being pro-active in getting this disease under control. We went over my check list, discussed my medications, what steps to take, how I was feeling and ssdi. Although he did say he believes working is important with this disease if I can, I have his support if I have to file for ssdi. We also talked a little bit about how giving up my job and filing for ssdi made me feel. He was a HUMAN BEING and even made eye contact!!!
Peace & Love....Neasy
Neasy- I'm so glad your appointment went so well!! Sounds to me like you covered everything real well. That's great that your Dr is willing to work with you on most issues!
I wanted to tell you when I got my script for Plaquenil I was told before I could start taking it I had to see an opthamologist.(to get a baseline exam) I have to see him every 6 months to watch for any damage. I've been on it for almost 3 months now, so I can't tell you if I've had any bad effects from it yet---heck I don't even know if it's "working" for my RA yet.
Neasy - MRI is much better. My bone scan is stellar. Doctor said probably from a life of hiking but my MRIs show a lot of damage. So it is a good thing he is doing MRIs.
Hi Neasy,
I'm so glad to hear that your RD visit went well! I have a question regarding your Plaquenil. Is this the first time you've been put on Plaquenil, or have you taken it before? The reason I'm asking is because if you've never taken it, you should probably have a baseline eye exam with an ophthalmologist.
I was on it several years ago, and my rheumatologist sent me for a baseline screening and then repeat eye exams every 6 months. Something to think about if your rheumatologist didn't suggest it. :)
Take care,
Gale
BTW...remember, it takes about 6 months for the Plaquenil to start working.