~~OK, I'm Stronger Now and Mad as Blazes!!~~ - Reflex Sympathetic Dystrophy Message Board

AngeInBoston · 10-21-2003, 08:09 PM

Hi Everyone!

Thank you to everyone who follows my ongoing saga and helps me when I'm down...Today drove me INSANE with ANGER!!!!!

Joey was supposed to go to the "Big Fancy Hospital's Pain Center" today for his second block, which I found out was going to be an Epidural Clonadine Block, instead of the Sympathetic Lumbar Blocks he's had 3 over the course of the last 6 months (AAARRRRGGHH!!), but at 9:30am I get a call from one of the Acid Secretaries telling me that the Director Dr. found out last night he would be 'out of state' today, and they couldn't do the Block!!!

I SCREAMED "WHHHHHHHHAAAAAAAAAAAAAAAATTTTTTTTTT???? ?? NOOOOOOOOOOO WWWWAAAAAAAAAAAAAAAAAAAYYY!!!!!!" Then I went into a tirade about how badly my husband needs this block and it's been 3 weeks when he was supposed to be having WEEKLY blocks....I yelled at her how the Dr raised Joey's meds 10days ago and turned him into an incoherent Zombie last week, and that I've withheld the meds myself, because I DIDN'T want to CALL THEM, because they had such UNsympathetic and RUDE secretaries who hold their patients in such CONTEMPT that I KNEW my calls would go unanwered! I told her I should have brought him to an Emergency Room but didn't! (ARRRGGH THE GUILT!!!)

Finally, I said, ISN'T there ANYONE ELSE THERE who can do this block today???????? To which she said yes, and we could keep the same time, if we didn't mind the other Dr. I said DEFINITELY!

Then, 10 minutes later, she calls me BACK to tell me that the Drs. who are on cannot do his 'Special' kind of block, that ONLY the Director Dr. can do them! So I asked, WHEN can we get an appt with HIM? She says the computer shows the next opening at like November 19!!!!!!

OMG, I went BALLISTIC on her again, or maybe now was when I said some of the stuff above, but she agreed that this is unacceptable when they cancelled the appt, but that she shouldn't be forced to be abused either! So I apologized for being abusive, but I also continued to hammer into her brain that I expect Joe to be fit into an emergency appt ASAP, like TOMORROW!!!

She tried to stick up for the Secretaries saying they take calls all day from Angry people in Pain who want appts NOW, and I retorted right back that I did the EXACT same job at a Dental Office, but that if WE cancelled someone, we would squeeze them in ASAP instead of in 4 weeks! And ESPECIALLY not someone in agonizing Root Canal Pain! She agreed, but then decided it was time for her to get off, and she said she was going to have her Administrator call me "RIGHT BACK" because it was HER job to talk to upset people like me!! I demanded her name, it was Carol, and I asked if she was different than a Caroline or Carolyn I'd talked to before, and she said yes....and I said GOOD! And that I'd also had the PLEASURE of talking to the LOVELY Cathy too~! <<Read with Sarcasm dripping>>

Well, I hung up with her and actually sat there like an idiot holding the phone for a few minutes waiting for the call back, and Joey's like, "What are you doing?? She's not gonna call!" When he asked me which one it was I was talking to and I told him Deberah, he said "Oh she's the WORST!! Don't fall for her nicey nicey offended scam!!"

So I snapped out of it and started researching some other Pain Centers at some other big Boston Hospitals, and basically they ALL say they deal with RSD....so really HOW is a layperson like us to know one Dr from another? The trouble lies in obtaining the referrals from our PCP who can only refer to this current hospital...although I have to investigate better if we can get any special clearance to go to a different one...otherwise the HMO told me to switch PCP's to someone who COULD refer me to the Hospital I wanted to go to, but that's such a drag I don't want to deal with that~!

Then I decided to call our PCP and see if we could get an appt we scheduled for Thursday bumped up...the secretary asked what the appt was for, and I said his Orthopedist downstairs was ALARMED at how swolen his Right (Other from the RSD foot) foot had become and wanted our PCP to see it and take tests! They fit us right in, and I went in with him and had a long talk with the Dr. about everything...it's pretty out of his league, but he didn't like a rash like spot on his foot, and it wasn't too puffy when we went, but I told him how we were having such a hard time everywhere else and it seems like no one really knows the whole story since they're all different places and it doens't go into one main file! I asked him to run a bunch of tests to check for anything that might have been overlooked? He sent him for Xrays on his foot, hand (which suddenly has a lump on it!) and chest, and blood tests for I don't know.....

He also talked to Joey about cutting down on the Valium, even though he has such High Anxiety, because the Valium is making him more depressed....

His Psych Dr from yesterday left a message for me too that she wanted to talk to me about Joey's overuse of the Valium and that she does consider him very depressed....she only raised him from 2 Prozacs to 3 yesterday which didn't impress me since I think he needs something 100 times stronger, but I'll wait to talk with her...played phone tag today.

Oh! Have I told you all how much BETTER Joey has gotten since I started withholding his meds? He's down to one 800mg Neurontin, one 100mg Duragesic Patch that he begged me for, and some dilaudid because the pain is so bad it makes him cry.....but we've decided together that he is going to DEMAND ALL NEW MEDS, because the Duragesic and the Dilaudid just are NOT doing anything for the pain! I know I shouldn't have just done it myself, but actually Joey started naturally doing it on his own several days earlier by missing doses that I had for him in his little 'dose box'....finally I decided he was down to two a day so I made it one of Neurontin, and he's SO much better....he had spasms that the very first low dose of Neruontin took care of, I don't know why they kept upping it when that is NOT one of his symptoms!

Anyway, I just needed to vent to you and tell you all that I've gotten another Second Wind and I'm ANGRY and READY to FIGHT!!!!

Tomorrow's a new day and I'll be ready to scratch anyone's eyes out who gives me more trouble! Watch out!

Talk again soon,

~Ange~

cattys · 10-21-2003, 08:21 PM

You go get them Ange don't take no sh$$ from no one. That is the way I have to be dealing with the people in the medical field anymore.

I hope everything works out real soon for you two. Hang in there.

Take care
cattys

Nakona · 10-21-2003, 08:27 PM

ANGE!!!!!!!!!!!!!!

Bravo!!!

Joey is very lucky to have you on his side and fighting this battle for a decent life with him, and for him at times I'm sure.

You just keep that grit in your eye attitude and you'll get him help.

Nakona

sharon1030 · 10-21-2003, 08:28 PM

Hi Ange,

Good for you! I'm glad you got somewhere with them. I really know how frustrating docs can be. I've been going to my ortho for the past 14 years and I probably only had about 10 appointments that weren't cancelled or postponed. So, I understand how upsetting that is. As I've told you before, I honestly think that family members and loved ones have it rougher than the patient does. I think this is true of most diseases. In my opinion, it's so much harder to watch the suffering going on than it is to be the sufferer. I really do feel for you. I think Joey needs a med that covers his pain adequately so he doesn't need to take more than prescribed-I know you probably know that already, but I guess that's why he was so doped up. I have taken hefty doses of meds in my life and I have never been the way you described Joey was. Good luck. I hope you find someone to help you guys soon.

Sharon

Lacei2 · 10-22-2003, 12:38 AM

Ange,

I just wanted to tell you that It's been a really long time since i've seen such an example of what a really good spouse/partner does for the other. You are raising the bar world wide and give 'HOPE' for those of us who wonder if that kind of coupling exsists anymore.

I see so much lonliness that this disease (and so many other life long and serious disesases) can cause in what was beforehand a very strong family!

Sometimes too, you will see families be pulled together by something like this, where the diagnoses is made and the family goes "WHOA! Okay, everything else is now officially petty, we have a really sick family member! *and now thier eyes are opened to what's important".

And then - in some tragic ones, suddenly the family is divorcing; the spouse making really poor and childish excuses saying they've been fighting for a long time, and they were planning on it anyway, pointing fingers at the ill person, saying that it has 'nothing to do with that'.

I know that my relationship is over, and my children and I are moving out of our family home in the next few weeks or so. It absolutly breaks my heart, because I always thought should I end up in the position that I'm in, I would have a "YOU"... Unfortunatly it didn't work out that way for me (yet), and after almost a decade, we're calling it quits. I've recieved no compassion at all since my diagnoses, as a matter of fact, I've been treated like i've just thrown one more coal into the fire by getting sick and 'how dare I'. When I have a really bad flare up, I get an attitude like "how long until a paycheck NOW???" And I just dont want this kind of love. I desearve more... And so does my spouse. Anyway... I wanted to give you your proper kudos, because YOU keep me motivated for finding love... that its OUT there...

But reading your posts, and how you are there for your husband, how you dont run from his illness, but embrace it, and face it head on for him give me hope! Hope that Im not crazy in what I expect from love, from a marriage, and from love! Like I said, you set that bar!!!!

You are his body, when he cant move; his voice, when he cant speak, and his mind; when he cant think. You know when he's hurting and you do everything you can to erase the pain.

You do everything from feeding him when he's hungry, keeping the house clean, and still, no doubt, make sure your still a good mom to the children the two of you brought into the world together; and THAT alone would keep a woman running around full time.

But thats not all, When the going gets rough, you never back down; When he's too proud to tell his employer he's sick and he's in danger of losing his job, You grabbed that bull by the horns and made the call yourself. Never, in my entire life, have I heard of anything so courageous!

You saved your families livlihood, and also, in doing so, you probably saved your husbands pride.

But wait; you probably already knew that when you did it. I know you didn't JUST do it because it put food on the table, although it was a major factor, because I remember you saying that he was always the primary worker in the family, and that he was too proud to tell his employer that he was too sick to do what his job description was... You didn't want to take that away from him. So what did you do???

You studied the law to find out EXACTLY how much time he had to take off to find his baseline health level and balance his meds!!! Instead of letting his boss bully you and your hubby around with threats of letting him go eventually, you told HIM how much time your husband had to take off, and then what your plans were after that!

GOOD GIRL!

You adjust his meds, and take the time to learn as much as you can about this crippling illness that so many (including the medical profession) simply dont. And yet, you still remember that HE is the one who is suffering this disease, and that he is a human, and you find compassion, after all that caretaking that you do and find the time to communicate with him in love.

What I wouldn't give to have a heart to heart with someone who loved me genuinely!

He loves you and trusts you with his life, and Ange, you've earned it. That doesn't happen every day in this world anymore.

Im so sorry that he didn't get the medical attention that he was promised today. I hope that all in all he's feeling as good as possible in spite of it all.

I wish you luck in changing your doctors! My God it sounds like you've got some real Holy'er then Thou *** holes out there in the medical industry! Well, thats everywhere though, isn't it?

What's Joey's time frame looking like in the job situation? I cant recall the whole "time frame" and how much he's got off and then what happens once that runs out as far as your options go.

But know that I do think about you alot and send you MY caring thoughts! Im a mom with kids (12 and 15) and know how scary it is when it comes to finances and wondering how your gonna come up with them!!!

Your an inspiration to me Ange... Keep up the GREAT work that you do.... I hope Joey gets the block Sympathetic, epidural, or otherwise, WHATEVER is going to help him, ASAP. (I've never had any blocks yet, so I dont know anything about'em)...

Big hugs!
Leanne