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Posted 4/24/2011 2:23 AM (GMT 0)
Hi everyone

I didn't get my script for my Fentanyl patches again today. I went to our mailbox praying to God that they would be there, but they were not. This is the fourth day with this &%$#@(*& pain. The withdawls are getting a bit more bearable. I seem to feel worse at lat night with them. Last night I had a hard time going to sleep again. I got up and looked at diamon rings on Zales website. My husband got backpay from SSI, after about 2 years. I know, strange. Jerome wasn't able to get me an engagement ring when we got married, so he got me a engagement bible. I left it in Tennessee when we moved. We had several bags of stuff to take on the bus, and we didn't know we couldn't bring it all. I didn't find the bible. I don't know where it is. My parents took the rest of the stuff home with them, and put it in what was a huge dog house that my dad built for our dog back way back when. So, I don't know where it is. So, I'm wanting to get a diamond ring.

I am going to call my dr. Monday again. I'm going to tell them I've been going thru withdrawls and extreme pain for all this time, and I am sure I could get the script at least by Tuesday. I am really angry.

I've been thinking about calling the pain management dr. that I saw and ask her about an appointment where I can discuss a pain pump. I feel I would get better service out of it than them sending me scripts thru the mail. Most drs. have you come in once a month to get a script, dont they?

Can anyone that has a pain pump reply and give me your experiences with it? I'm just at the thinking about it point right now. I'm going to research it on the internet and see if it's something I might want to do.

Well, i'll go for now. i hope you're all having a low pain night. Happy Easter to all. Take care.

Love you all,
Loretta
Posted 4/24/2011 2:52 AM (GMT 0)
Yes, usually we go in once a month, but my doctor didn't have a
monthly opening so I'll have to call out on Monday, this'll be my first time
to do this...Sure hope you get your medicines soon and that your feeling
better...Prayers and healing hugz........Sure wish you were not going thru this...
Will be thinking of you, prayers...
Posted 4/24/2011 2:59 AM (GMT 0)
Hello 9yrs!

Sounds like you're having a pretty difficult time of it there. I'm not sure why your med is being ordered by mail. Can you not pick up the script locally from your DR? If you have explained this to the members before, then disregard my question here.

I do not have a pump, but I believe this is a last resort when all other options have failed and is not an issue of connivence for the patient. Also, I believe that many of the pumps nowadays hold enough to last at least 60 to 90 days, but again I'm not an expert on it.

Straydog seems to be our forum expert on this, but I know there are other members who have them as well, and maybe they will chime in on it.

I'm afraid I just don't get a PM leaving you way out on the hook like this. They very well know this can be more than serious with the Fentanyl. I don't think I would ever let this happen again, if it were me, and I can assure you I would have a good heart to heart chat with the DR about this. Any script or med can be overnighted in the mail if needed. This seems to be negligent on their part.

Also, you have double posted this topic, and maybe you could delete the other post?wink


Take care,

SE wink
Posted 4/24/2011 6:07 AM (GMT 0)
Hi Loretta. I'm so sorry to hear that you are still dealing with this out of control pain. *hugs*

I have a pump implanted, though mine is for spasticity more than pain... I have baclofen and bupivacaine in mine, but mine helps me a lot. Before we got my dose right, I couldn't walk at all. I'm still heavily reliant on my wheelchair for anything more than short distances, but at home now I can mostly use crutches or furniture.

My pump is made by Medtronic. I don't know if anyone else makes them, but Medtronic I think are the main ones. They come in 20ml and 40ml. Mine is 40ml because my need is pretty high, and even with that I have to have refills every five or six weeks. It's pretty large. I'm on the skinny side, but mine sticks a long way out. But for the relief it's a reasonable trade off. Any quetions, just ask :-)

Laura
Posted 4/24/2011 9:15 AM (GMT 0)
Hi Loretta,

I'm so sorry you are having such a hard time.  I have a few thoughts, though....

--Please don't think I'm being harsh - because I say this ONLY because I really do care -- but you have to be more assertive and advocate for yourself.  It sucks that it is that way.... but you have to do it.  Otherwise, you'll only have more and more experiences like what you are going through right now. 

I think you have some transportation issues, is that correct?  Is that why you get your scripts mailed? Some doctors will make certain compensations for unique circumstances; I've had that happen.... but the "usual" protocal is to visit your doctor 1x per month for your prescription(s).  In fact, I'm on so many meds/high doses/etc. that I go in every 28 days.  That way - I have 2 days to deal w/ potential pharmacy issues (not having enough in stock and so forth).  It's still for just a 30 day supply but it gives me enough time to get it all situated.

--I know a lot about the pain pump, particularly the kind that Laura described (Medtronic).  In 2008, I had the trial (which you have to do first to see if it even will work for you).  I've told my story here before.... but, long story short, I've decided to wait on the pump until the meds just aren't working anymore.  I'm almost 38 and the pump is sort of the "end of the line".  Don't get me wrong - it's a wonderful thing and helps many, many people.  But it's a definite last resort after trying all possible oral meds and so forth. 

It seems you were getting some relief from the fentanyl?  Is that correct?  That would be an even more reason not to go the pain pump route.... if something works - that's great!  You just need to get your refills on time.... and sometimes that means being aggressive.  I'm a normally "shy" person....but take me to any medical office/doctor/hospital - and I have a totally different demeanor :)  I've had to do this in order to survive.  I've had some horrendous experiences.... been treated horrible.... etc. - until I learned that I had to stand up for myself and, at times, say - "this is not acceptable".  Period.

I hope you don't take offense to what I've said.  You sound like such a nice, sweet, kind, polite person.... and those are all wonderful qualities.  But this is also your health you are talking about.  The thing I always say is this - there is not ONE doctor....in our situation (chronic pain/illness, on meds, etc)....that would wait and not get his/her refill.  And, ultimately, our doctors work for us; we hire them to take care of us.  Letting you go off of Fentanyl "cold turkey" - in my opinion - is just not accetable care.

Hugs to you, my friend.  I hope you understand what I'm saying :) 

Love, Tina

Posted 4/24/2011 10:45 AM (GMT 0)
Hi Loretta. Sorry I haven't posted. I had no idea that you've been going through this. I missed your post.

I can't believe that you have been without your patch for so long. THat is awful!

Your doctor doesn't have an emergency line, where you can reach a doctor at all times? I guess some don't.

I will pray that you get your patches in the mail tomorrow.

Is there any way that you can ask your doctor for another script, maybe for a week of patches, so this doesn't happen again. There has to be a way. No one should have to go through this. I would ask the doctor how to avoid this happening again on your next appointment.

As for a pain pump, I don't have one, but I have read that they are really a last resort for pain patients. I would talk to your doctor to get a way around ever going through this again.

Please keep us updated.

Hugs,

Flower
Posted 4/24/2011 12:18 PM (GMT 0)
One more thing...I think that you got great advice about being assertive with your doctor. Not too assertive, of course, but this type of thing should NEVER happen to a CP patient.

Hugs,

Flower
Posted 4/24/2011 4:06 PM (GMT 0)
Dear Loretta,

    Good morning *hugg* Happy Easter!   :-)   How are you feeling this morning? How are your withdraw symptoms today? I hope were able to fall asleep eventually. You have had a very hard time. I wish that you didnt have to be in so much pain. None of this had to happen if only the staff had done their jobs correctly.

     I know you were approached about a pain pump many times. I can understand why you want to get it implanted. You may very well want to go ahead with a trial and see how you feel about it. Experience it for a while and see if it is something that you feel will give you better coverage. Choices about medical care and treatment are highly personal decisions. In the end only you know what is right for you. No matter what decision you make, I know you will do what is best for yourself.

     Here is some helpful information you might want to read through

Implantable Intrathecal Pumps for Chronic Pain

Neuromodulation Society

 

     Did you decide which ring you want? What does it look like? I think it is fantastic. My wedding band is the one I love the most. It has small inlay of diamonds on the band. Inside it says MOM with a diamond for the O. It really touched my heart because he was still in college and working part time. I was working full time and paining commercial properties on the weekends. He never took any of the household funds to buy it, so he literally had to save very small amount of money for a long time to do it. Much later he wanted to get me a new "better" band. I said no way!

 

     I wish there was some way for you to get your stuff from the converted shed. Can they mail it out to you or is it too much stuff? The story of your wedding bible really touched me, it is awful that it was lost in the transition / move. Do you know if any are sold like it now? It would be so nice if you could find another like it.

 

      I know you must be exhausted right now. Try your hardest to get through today. I am so very sorry you have had to be in so  much pain for so many days now. Please know we will keep you in our prayers tonight.

 

*warm hugg*
        dani   

Posted 4/25/2011 3:05 AM (GMT 0)
Wow. Thank you so much for the support.

Tina. You're right. I do need to be more assertive. I don't take offense to anything that you said. You're a dear friend to me and I am so glad to have this big family to support me thru one of the worst times in my life. I will try my best when I call tomorrow to be more assertive.

Thanks Dani for the links. I'll check them out.

Michael. I'm sorry I didn't see that I posted twice. That's why I thought everyone didn't see it.

Everyone else. I appreciate your love, support, and prayers. It's nothing in this world that equals this forum. It's just awesome. I'm so blessed. You all are so wonderful guys and girls. I don't know what I would do without you all now. Know that you're all in my thoughts and prayers too.

Take care

love and hugs
Loretta
Posted 4/25/2011 5:45 PM (GMT 0)
Hi Loretta, did you get a hold of your dr and what was their excuse for not refilling the script for the Fentanyl patches? I know you have some problems that sort of prevent you from changing PM drs and such, but they seem to never get your meds straight when it comes to refills.

I may have asked you before or someone else here did, but will ask anyway. I see many times a van or even a small bus that brings a lot of patients in to the drs office and it is for people that are considered disabled. Not all of these people are in wheelchairs either. These are people disabled without transportation. I cannot remember what I have seen on the sides of the vehicles, but one place you could ask is the drs office. They can tell you if the county you live in provides transportation like this for drs appt. They would know because they usually call the company when the dr is finished with the patient and ready to be picked up.

There was a duplicate post of your original here dated 4-23-01 and I did go in and delete it. Everyone had posted answers to you on this post here. You and Screamin Eagle had posted a thing or two back & forth about the duplicate post. It is real easy to hit the submit button twice, I have done this many times myself and not catch it until the next day, then would go in & delete it, lol. There is an edit option here on each post we do, not sure if you have seen it, on the top right side.

Let us know what you find out about the meds.
Posted 4/26/2011 12:47 AM (GMT 0)
Hi Straydog. Thank you for deleting the other post for me. I still don't see the delete button.

I did call the drs office today, and told the receptionist that I haven't received my script for my patches yet. She said "You haven't"? I told her no i haven't. I told her that I haven't had one on since last Tuesday. I'm having withdrawls and extreme pain and this is rediculous. She said she saw where it was sent back to the dr, but she would send it again. She said my dr. was on vacation last week. News to me. I had no idea. She said if I don't get the script in the next few days to call the office back, and I intend to do that. I was so mad before I called, I asked God to please hold my tongue. I could have done some damage and possibly lost my pcp that i've been seeing for about 5 or 6 years now. I didn't want that to happen.

I do have medicaid transportation where a van or car comes and picks me up for all my appointments. Just they won't pick me up unless it is an appointment. They're a life saver. When I went to the ER a few weeks ago, they're the ones that picked me and my husband up from the hospital and brought us home after our friend kept renigging when he told us he would pick us up when we were done. So, I'm really blessed to have them. That reminds me, I need to put the paperwork in my backpack so my nurse practioner that i see for my depression, anxiety,etc. meds from can fill out the pages, so I won't lose my transportation. It doesn't expire until the end of June, but I like to get it done at my next appointment after I get it, so that I make sure it doesn't expire. Thanks for the reminder.

Thank you for the support. You take care. I hope you're having a low pain night.

love and hugs
Loretta
Posted 4/26/2011 2:07 AM (GMT 0)
Oh Loretta - *gentle hugs*

I hope that this gets things sorted out for you and that you get your script with no further delay. That really is poor behaviour on the practice's part :(

I hope your pain improves quickly.

Thinking of you.

Laura
Posted 4/26/2011 9:47 PM (GMT 0)
Hi, I have to go once a month to get my scripts, and I make sure the appt, is no longer than 28 days or 4 weeks from the day I am there for the next one. Do not want to hit a weekend or holiday and run out. A friend travels 2 1/2 hour drive to her pain management. They give her the option of getting three months post dated scripts, so they are at the pharmacy ready to fill as the time comes. OR she can call aweek before she needs the script , and it is mailed to the pharmacy, and then mailed to her. I had got a three month script to mail in but the copays were actually more for the three month than getting them filled monthly at the local pharmacy. Drs do not seem to care if they are not on time. Hope you get yours soon, if not go to the office and say you will wait for the script.
Posted 4/27/2011 3:22 AM (GMT 0)
Wow, I am floored at the people that get scripts mailed to them or to the pharmacy. In the state of Texas it is against the law to mail a script of any kind. With the way mail works sometimes and people breaking into mail boxes not sure I would want to go that route or not.
Posted 4/27/2011 4:44 AM (GMT 0)
Unfortunately that's the only way for me to get mine if I don't have a monthly appointment. I'm thinking about asking for a monthly appointment or I'm definitely calling a week ahead.

thanks all
Loretta
Posted 4/27/2011 4:56 AM (GMT 0)
Hi Loretta...

Yeah, I would definitely encourage you to get a monthly appointment....in order to prevent these type of situations.  I know it can be a hassle, as it's very hard for me to get to my various appointments..... but it's so much better than going through disruptions in medications.

Hope you are doing ok.... Take good care --Tina

Posted 4/27/2011 5:02 AM (GMT 0)
Loretta since you can get the van to take you to appts I think it would be in your best interest to make a monthly appt and that way you can have the scripts in hand every month. Since you have seeing this dr and getting meds from her have they gone a month and ever filled your scripts right? It seems like every month they give you problems on getting the scripts for some reason. It makes it real difficult for you to have pain control if you cannot depend on the drs office to mail you the scripts every month. I hope you can get this worked out. Take care.
Posted 4/27/2011 6:10 AM (GMT 0)
Thank you Straydog. I am going to ask for monthly appointments. This is totally frusttrating and it's uncalled for.

Everyone. You're helping me more than you realize probably. I'm getting strength from family here. I actually feel like i can be strong and accertive enough to stand up for myself. I had an incident quite a few years ago with Jerome's dad. He did something that was totally wrong. I was very shy back then, but he made me so mad. I called him and told him he had better never do it again. I hung up and he never did it again. You guys just helped me get that strength back again. I was quite accertive on Monday when I called the drs. office. I want to thank you all for helping me to be accertive again. I think the pain has just gotten to me so much lately that it got a hold of me, and I couldn't do much of anything to help myself. You're all so awesome. Thank you again.

The withdrawl symptoms are better, I have to admit, but the pain is a doozey. I really didn't know I was so strong. I've gone thru this without totally breaking down. I think I'm a better person for having chronic pain. Don't get me wrong. I would give anything to have my life back that existed before that fall happened, but I can't get it back. Thank God. I think I've finally accepted how my life is now. It took me 10 years of working thru it to get to where I am, but I'm here, and you're all here too. That's the most wonderful, awesome thing that could have ever happened to me is to get a wonderful loving family like you guys and gals. I just can't thank you all enough.

I don't know what's going to happen with the mass, but I'm more calm now because of Michael. I had sent him an email and I use yahoo and I put him in my contact list. I noticed he was on, so I clicked on his name and up popped a chat area, somewhat like we have here. We talked for a bit there and then added each other to yahoo messenger and then talked a good while on there. I'm so thankful that he was there when I needed someone. I hadn't got to know michael much, but he's a wonderful and kind guy. He's going to make a great moderator. I look forward to getting to know him even more as time goes by.

Well, this is quite long. Sorry about that. I just got started and couldn't stop. You all take care, and I hope you're all having a low pain night and a great sleep.

love and hugs
Loretta
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