Update: 7/9

Talk about giving someone notice!! They didnt even ask you if next Thursday was OK? Some folks have to schedule transportation and cancelling it without adequate notice can cause you to lose it altogether. They just now figured out they wanted you to see this particular Dr?

Always waiting on something aren't we?

I am at the point where none of this bothers me, what else is new. I wasn't given any choice in the change of appointment, it was either that, or who knows how far out in the future. After all I have been through, another week isn't going to kill me.

I will be seeing a specific neurologist within the Physical Medicine/PM group. Fine by me. Still saying to allow 90 minutes for this first consultation, which I hope it means they will be thorough.

david

I don't feel too bad, being a new patient, some people might have to wait many weeks or months to get an appointment, and the best part, is they openly take Medicare

If this is truly the right dr for you, it sounds like they have your best interests in mind. Like you said, it can often be many many months to get into a specific dr or speciality.

I really hope this dr can help you. I know how exhausting and frustrating it can be to play dr roulette.

David, I'm also sorry that your appointment got pushed back, but I'm glad that you do finally have an appointment Prayers and hugs to you as always.

Wow is so right. This is really strange, I do not know of anyone that has had as many appts canceled & rescheduled when trying to be seen by a new specialist as you have. If the appt does not get canceled, then the hand picked dr turns out to be a jerk and a waste of time. This has been going on with you for over a year. Each time it is suppose to be an urgent appt and thanks goodness nothing going on with you is life threatening or you would already been dead waiting on that urgent appt. This goes back to last year when you were to see some hot shot gastro guy who turned out to be a jerk. Then there is all of these back & forth lengthy phone conversations with a promise of an appt, well why keep wasting phone time, make the appt & referral on one of these calls. Lets be honest with all of these back & forth calls which are nothing but wasted time, why not simply do the right thing instead of this craziness.

This week the big thing with the dr increasing your patch, and yes this pharmacist should have known Fentanyl does not come in 125mcg or 150mcg. Jeesh, what school did that one attend. Sounds like either a script for a bad book or a bad movie. Sounds like someone is trying to blow a bunch of smoke up someone's tail pipe!! WOW, I am just floored and never have heard of such wild things happening to one person in my life & I have been around a few years. Next week will be interesting to say the least......Susie

David, I'm sorry to hear about this delay. I'm sure it's disappointing to you. I know you were all ready to be seen this week (((hugs))).

Now, I'm not bothered by all the issues that you've mentioned with appointments being canceled or changed. Or getting a jerk for a specialist. The only reason I'm not suprised is I have been a military dependent who gets military healthcare.

Lots of folks think I go to the VA, but they do not see dependents. I have to be seen at the active duty members facilities, if they are seeing retirees. Now, they have improved over the years, but basically you get whoever is assigned to you. Like them or hate them it's hard to change Doctors. Trust me I know, you get a reputation as a trouble maker if you complain to much about your Dr. That can cause a lot of issues as far as getting the correct help when needed. It's always hurry up and wait with the military too. When my hubby came in, back in 1986, unless you had surgery or broken bones, we were expected to change our own bed linens,get our meals off the tray, etc while being an inpatient in the hospital, yes new moms too. Even up until around 1995 they were having women still have natural childbirth, no pain relief was offered.

People who encounter great healthcare and hospital stays may never hear of the horror stories out there but they exist. David, I'm glad they accept your Medicare, it's a shame they've pulled and pushed you around, but you do have your appointment. I know your story and you've had a really raw deal all the way around. Some folks just go down that path. You and I both have discussed our black cloud that follows us.

I'll be thinking of you next Thursday, I hope they do not make anymore changes. I also hope and pray that your pain levels aren't through the roof between then and now.

Hugs,
Barbara

I do understand the "black cloud" that can follow patients around.... and I definitely fall in the category that if something can go wrong, it will happen to me. I have a very complicated health history and have endured my share of "strange" things happening along the way.

That all being said, there are things that don't add up. What I feel the most frustrated about is that we've spent endless hours here trying to give advice on what do to to help David's situation. Why? Because most of us deeply care about someone that we see is not getting proper care or that is suffering.

I know we are not the only board to have done this w/ you, David; people have tried over and over on the PC board to suggest certain things with you. I'm asking you to step back for a moment and see the cycle... and, for a moment, understand the frustrations of many of us.

I guess the thing I just don't understand is why all of our suggestions are shut down. From suggesting different medications.... to trying the botox.... to going to counseling.... to 1000 other things..... I'm not saying any of these things are the "answer".... but I certainly would try anything and everything (and have done that w/ my own health/pain issues).

What you see as a positive trait (patience, etc) is not really a positive thing when you are dealing w/ health/pain issues. You have to be the squeaky wheel (albeit in a polite way) to get things going.

Yes, appointments do get cancelled. But a 90 minute appt getting cancelled, 2 days before it.... in order to see a different doctor? Something is just not adding up. You had already told us that you spoke in depth w/ someone on the phone and they knew the exact doctor they wanted you to see.

So, we of course want to be here for anyone that needs support. But I also think you have to dig deep and help yourself, too. And see the frustrations that many of us feel that something is just not right.

--Tina

Tina, why don't you just say it? You have already made enough insinuations. You think I am lying?

I assure you I am not. My entire PC/CP journey from 2008 has been plagued with bad things, set backs, severe side effects and quality of life issues. I have not had a break. In those 5 years, I only had a 3 month period where nothing wrong was going on, and that was early in 2009, and its been downhill ever since.

As far as suggestions, help, support, etc. that I have been "offered", both here and at HW PC, I take all of it in stride. Due to some of my unique medical situations, often the advice couldn't be followed as suggested. At other times, I have taken advice from HW directly to my doctor, and say, Doctor, what do you think about that?

I don't like it when people assume how I feel and think. I find that rude and insensitive. Only I know how I really feel.

Some of you seem to be in the "blame" game. Always looking for someone to blame. I don't work that way. Stuff happens. Things change. Circumstances change. You have to get over it, adjust, and move on.

You are assuming that I never take anyone's advice, which couldn't be further from the truth. Just seems like some here get upset when I don't directly agree or jump to something suggested. I do not come to HW for direct medical advice. HW is a peer-to-peer patient support site. For real medical advice, members should seek that from their doctors.

So please don't make insinuations about me, my character, and I certainly don't need anyone telling me how I think, feel, or make my decisions. That's not remotely helpful or "supportive".

You don't see me doing that to others, ever, here at HW. I treat everyone with respect.

You, and a couple of others here now, make me feel like I am on trial, or in a deposition, every time I post now, and that's not cool, trust me. If you have doubts or problems with me, then do what you would advise others to do, put me on ignore.

Thanks,

david

Im going to remind everyone to follow the rules of HW. #3 especially is warranted here. They are there for reasons and Peter expects all of us to follow them.

As Tina has reminded us before if you have a problem with someone please use email and the privacy it affords and not the open forum where new folks might not understand our frustrations with others.

David,
Grow up or I will lock your account.....again.

Peter