Well, I've been in almost constant pain for over a month now and it's really getting old. My hands ache but are doing fairly well considering I can't walk due to the flare in my knees. Yesterday I was in so much pain I called to leave a message for Dr. Ding Dong that this is NOT acceptable, this disease is out of control, I'm seriously going to lose my job not to mention my mind and we need to figure something out. The girl on the phone told me that although my RD wasn't in, I needed to come in and see another RD. I couldn't drive or walk without using a walker (still very painful even with that) so I had to find someone to take me. At first I wasn't going to go because I thought "what are they going to do" but then I thought "well maybe I should go so they can actually see how bad this is. Maybe they will give me a different medication or even a cortizone shot". What a waste of a co-pay! The RD told me that he wanted me to change my appoinment with my RD on the 21st to THIS week and I could up my pred to 15mg per day until I got in to see him. I took paperwork for partnership for prescription assistance and told him that even with my co-pay for Enbrel I wouldn't be able to afford it. He didn't even look at the paperwork and said "yeah, it's expensive" and then went on to say that my RA can't be controlled with what Dr. Ding Dong has me on so I need to speak with him. Did I serioulsy go to the RD in severe pain and pay my co-pay for this? Okay, so I go to the front desk and change my appointment to this Thursday. I get to the elevator and low and behold it's broken down. Are you kidding me? During the 2 hour wait for the elevator a girl comes out in a wheelchair. Her Mom is totally pissed because they've sat in the office for over 4 hours, her daughter has to go to the bathroom really bad and they have NO handicap restroom. How in the hell do you not have a restroom with a door big enough for a wheelchair in that type of office?! The girl literally had to go down 2 flights of stairs on her rear end and NO ONE offered to carry her. She looked about my age and maybe weighed 160 at most. I couldn't believe that no one could help her down the stairs with THEIR broken elevator and NO restroom for the handicap. The RD I saw even came out to leave for the day and walked by all of us with his head down trying to avoid everyone. I was outraged that no one helped that girl!!! While I'm waiting, I decide to check on the Enbrel script that's been at the pharmacy for 2 weeks trying to get filled because my RD has to fill out a form for medical necessity. I call and they've LOST it and no one knows what I'm talking about! One of these days I know I am going to sit back and laugh about all of this. Let me give you a run down for those of you not familiar with my situation. Although I find no humor in it right now...I certainly will one of these days.
1) I go to the same RD for 2 1/2 years and go on 2 year study with him that he feels is my best option.
2) RA never under control during study..however better than it is now
3) Study ends...RD takes me off everything cold turkey for 30 days awaiting a 4 week follow up appointment where we will learn the findings of the study and start new drugs.
4) Go to 4 week follow up appointment...RD has no idea who I am or why I'm there and they have lost my entire record from the study with 2 years of medical records...they have not found them to this day. RD sends me out the door with scripts for prednisone, celebrex, vicodin and enbrel. With another follow up visit in 4 weeks.
5) Turn in scripts and find out Enbrel needs a medical necessity form from doctor or insurance won't cover it. Once that is done the co-pay is
6) Ready to have a complete mental breakdown so start trying to get in to see someone for my mental health. I won't even go into what a mission that was but believe me, it was a mission. Finally find someone that accepts my insurance and is accepting new patients, set up the appointment and then find out that my insurance doesn't cover out patient mental health. I tell the rep from my insurance that there must be a mistake because two of the other ladies I work with have the same insurance and pay a co-pay for metal health appoinments. The woman is very nice so she starts to look into it a little bit more and finds that we have TWO different plans at work. One that covers it and one that doesn't and of course I'm on the one that doesn't. Keep in mind there is NO reason for us to have two plans as I work for a company with about 40 employees so I'm just dumbfounded at this point. I go to the clinic manager and tell her what happened and ask her why I'm on a different plan and find out that I am the ONLY one on the standard plan because SHE marked the wrong box when she entered it into the computer years ago. Guess I'll look into county and see if they have something for mental health.
This has all been so absolutely ridiculous that it has to be funny! Talk about a bottomless pit...Someone throw me a rope will ya?
Peace & Love...Neasy
((((hugs)))) I just can't even imagine how frustrating this is for you. I am frustrated and want to slap some sense into doctors and people just reading this.
It just seems that some of these docs get their degrees from the bottom of a crackerjack box.
I wonder if going in there for appt. all ticked off and raising heck will make any difference in how you are treated.
Oh sweetie, I am so sorry. Its bad enough to be sick, why do we have to endure all this crap as well? If your employer messed up your insurance, the7 should make it right and retroactive! Love and hugsOh Neasy, hugs to you for enduring all this! It's no wonder you are totally stressed out! That medical office should have called the fire dept to get everyone down who was unable to use the stairs - they have special chairs and are trained to do it!!! However, that is just the tip of the iceberg here. I say give Dr. "Ding Dong" (love that name) a run down of exactly what you have told us and dont let him leave the room until he addresses everything.
Hang in there sweetie and report back. I hope you get good news!
Dear Neasy, can you switch to the 'stand in doctor' immediately. It is very brave (they never criticize each other) of him to tell you what your other doctor is giving you isn't working....you can use this to your advantage.
I know it hurts to see other people mistreated, especially in a wheelchair, but also getting really upset about something you couldn't fix was probably not the best for you. Please, remember the stress factor we are all dealing with!
I'm looking forward to hearing how you do Thursday, you must get help. Good luck, Sarah Lynda
Lynda,
Good point on the doctor, I hadn't even thought about it that way. Perhaps staying in the same clinic with a different doctor would be a good idea. I was actually waiting until they found my medical records and was going to switch to an RD that I found that actually has RA. I've been mulling it over in my head not truly knowing if an RD with RA would be a blessing or a curse. I'm very nervous about my appointment on Thursday after my last visit with my RD. I'm afraid that if I walk in and he doesn't know who I am AGAIN...I'm going to totally freak out! I'll post an update and hopefully it will be a positive one (crossing fingers).
Peace & Love...Neasy
Neasy - the best mental help I have ever found was in the 12-step programs of Alcoholics Anonymous, and its free and the meetings are 7 days a week, from 6 until midnight. Open meetings are open to anyone and you don't have to say a word. Closed meetings are for alcoholics only. The purpose of open meetings is for newcomers to decide if they have a drinking problem, but that's not the point I am trying to make here and please don't misunderstand me and think I am saying you have a drinking problem LOL. But I would highly suggest you go to just one open AA meeting, buy the AA Big Book (its about .00), and work the 12 steps using a substitute for alcoholism (your disease is my suggestion). Step One: I am powerless over (your disease) and my life has become unmanageable. Does this sound familiar? Or you can buy the AA Book at Barnes and Noble now and not go to a meeting at all. It works, it really does work, and it definitely is the cheapest mental help therapy on the planet. Good luck and you will be in my prayers.I sorry, Neasy. I hope things turns out for the good.
Huggs!
Neasy,
((((hugs)))) I'll say a prayer for you. Sorry things are so bad right now. I truely hope they get better very soon for you.
Cristal
I'm sorry things are so rough. Nobody needs the administrative crap at any time but especially when you are miserable, it is more than one can manage.
I am sorry things are so bad for you at this time Neasy - just remember it will pass, everything does. Can you find something nice to do for yourself to take your mind off your situation i.e. candles, bath oils, a good CD or