My ride to hell and back....

we planned a wonderful party for my Mother the day before Easter because it was her 79th birthday. We decorated with balloons and streamers and signs.....the whole works. The grandbabies had an Easter egg hunt that was just adorable as their ages ranged from 13 months to 3 yrs. It was a very warm day, so being very cautious I removed my Duragesic pain  patch "just in case" I would sweat and overdose. Stupid me did not have another one to put on  when the out door activties were finished so about 7 hours later I had to leave and go home and crash! I was in severe withdrawls and so help me, I now understand why people do what they do to get their next dose of whatever to stop the horrible pain! I was cramping everywhere. I was having some mild chest pain and I also could not sit still. My husband would try to get me to do relaxation breathing and while I was trying to participate I was also trying to keep from screaming  because the muscle contractions hurt so bad!!! I felt like my skin was ripping apart!!  I NEVER want to go through that again!  After trying to get another patch on it was impossible to get one to stay onto my body.   After the third patch we were finally able to get one to stay on.  Of course this will make me me short for the month so I have and appt. on Fri. with my doc. because I want off of the patches all together..     BUT.....HERE IS MY RIDE BACK FROM HELL.......I got a phone call from my attorney today and he got a letter from the Social Security Board and it looks like they are going to approve my case! Praise God!! I haven'e heard anything yet myself but it looks like they will approve my disability case starting July 31, 2008.  I have cried tears of joy all day. I've barely been able to walk since Mon. My Fibro is really bad. I had some lab done a d my sed rate is up to 38, my neck and shoulder is swollen as well are my hand and feet. The rheumy just thinks it just the rheumy. I saw saw her on Tues..  Anyway, I have an appt with my internist on Fri to get off of these pain patches.   I know that he will be upset but he will just have to understand my point. I hope how soon I get a letter from the Sociial Security Board. When I get my letter....the party is at my house!

Nurse2

                                                                    

Nurse2...

Wow, you DID go from bad to good, huh??

Let's start with the good... I'm so happy that you got approved through SSDI. That IS wonderful news... I know how happy you must be. Thanks for sharing your good news :)

Re: the patches and withdrawal... I'm so sorry you had to go through that! From my own experiences...and talking to others... I think the "withdrawal" from fentanyl is one of the worst things ever. I know the patches work wonderfully for some people....but getting off that stuff is a tough one. Hopefully, you'll be able to work w/ your doctor and taper down... but I know exactly what you mean about not wanting to experience that again!!

Again, congrats on your approval :) :)

Take good care...
Tina

Nurse2,
That's great news about the disability! That should ease your mind some. And hopefully your doctor can help you make a switch to something other than the patch in a way that's minimizes your withdrawal symptoms.

So glad the good news came!

PaLady

I can't tell you how much you all mean to me. I know that I have not been on this ride alone. I see my internist tomorrow and we will discuss how to get off the patches. The pain Dr. said that I need something strong and long acting and that my internist should be able to handle it but that if he didn't feel comfortable that he would be happy to consult with him. I honestly don't know why he (the pain doc) didn't just handle it right then and there but I guess they don't want to step on each others toes. My hope is to be off of the patch by next week as we go on vacation the last week of the month. How long does it usually take for you to start to get your disability checks? I know from working with with the government in an office they are usually tight fisted with their money. Does is take about 6 months? I was just wondering. What a whirlwind it has been these last few days!
Nurse2

 

 

   Dear Nurse,

 

     Good morning. I hope you have had a chance to rest. I know you have been through a heck of alot of pain these last few days. I do hope you can transition off the patches as quickly as possible. It sounds like you do not like them atall, and who could blame you?

 

     I am so glad your SS case is approved. No more headaches from them! Though I am unsure how long before you get your first check.. I am glad it is done, over with, and no more hassles and time wasted!

 

     Where are you going for vacation? I too, am going on vacation. Not until June though. We are going to Florida. I have never traveled while "sick" so I have about a million questions to ask .. one of the doctors.. which ever one I see next. about traveling with medical devices and medications. Also need to bit the bullet and talk about the problems with mobility..and Im getting off track!! So sorry!

 

     I will end this here. Please know you are in our hearts here. Stay Strong!

 

*hugg*

   dani

Dear nurse2,

I'm so happy for you re: the disability!! Praise God indeed!

But I'm so sorry about what you went through with the fentanyl withdrawal. I was only on fentanyl for about two weeks, and it was affecting my breathing so I had to stop, but even two weeks were enough to cause me some withdrawal problems.

I did hate to stop it though because fentanyl worked great on my back pain....nothing else has ever come close to really controlling that for me. I'm on Dilaudid now but it's not as effective.

By the way, I found an old post on this forum about a product called Hypafix that works REALLY well to help keep the patch on. It is porous so it lets air through but it sticks really well. The gentleman who mentioned it in his post had found it in a Toronto Walmart, but your pharmacy can probably order it for you. They say not to put anything over the patch, but I just cut a hole in the middle of the larger Hypafix patch so that it was just covering the edges of the fentanyl patch and it worked great. It was the only way I could keep the darn things on!

I'll be praying that your doctor can help you get off the fentanyl without too many withdrawal symptoms!!
(((((hugs)))))
JoAnn

Nurse 2 congrats on the SSD. I am so happy for you, that is a big relief. I know what you went through with the patch that day. I went through that all the time during the summer I was using them. They also caused me to sweat and the only way I could get one to stay on was to get my drug store to order Tegaderms. Had it not been for that stuff one would have never stuck to me. I am an outside person in the spring and summer and it took little for me to get over heated even in the shade and wham the next thing you know I am either sick from too much meds or in withdrawals from not enough. There was never an even balance the year I wore them. I constantly felt like I was coming out of my skin. After being bumped up on them I had some great difficulty urinating, which is a warning listed and my dr took me off of them immediately. Best thing that could have ever happened to me. I know they can be great for some people, but they are like anything else, they are not for everyone.

 

I do hope you can get changed over to something else real soon. Hang in there and take care. Please keep us posted on how you are coming along.