Pain Clinic in CC
 

Well I'm feeling hopeful yet scared. I'm going to the cleveland clinic right now its not till Aug 7 but she said probably will be earlier because they almost always get cancels to there pain clinic. Its 5 days a week for 3-5 weeks. I have to go to the assesment but if accepted which she said since I have had every test,tried many meds,pt with no relief and still have most days in bed will be accepted. I'm nervous but feel hopefull that they can help me get the tools to get back to life and learn how to manage the pain with therapies/treatments/better non narcotic meds. I have been fearful in the past because most are just a day and then they send you home and I get worse where the vicadin and other meds doesn't relieve the pain. So this is daily and for awhile to be able to follow up on me. I want to live my life and am sick of this living in my bed and on a good day doing errands.I try to push on my own and do random errands now but the cycle I'm in of the extreme pain and having been in bed most of the days for the 5 months or maybe more now is making it so hard.Also that all my docs here and treatment are not moving forward at all. It seems worse then when began all of this. So I will keep you updated and pray they get an earlier opening.

Great news...keeping fingers crossed that you are accepted. Hope you feel better soon!

Yeah, Daniella:

I wish you the best. Hope you feel better.

Love, Melody

Daniella,
That's really good news - I hope your assessment & acceptance into the CC pain clinic is a mere formality and that they will be able to give you some relief. I contacted them some time ago when I was first struggling w/ a diagnosis and found their people were very helpful and concerned - they responded promptly w/forms and information. Ultimately and fortunately, I found an excellent neuro @ UPenn so I didn't need to go to the CC but I've kept the info just in case.
The very best to you.
Alkymst

Good to hear
 

Daniella,
I'm so hoping this helps you. Hopes and prayers go with you.

Billye:hug:

Thank you so much. The lady said since I have had like every test and tried everything I should be admitted on that day so I'm hoping she is right and thats how they set the apt that after the intake to start. I'm real nervous but hopeful. I can't imagine how hard it will be getting through the full days there. The lady explained the first days are ruff but the support and treatment therapies help so much and after a few days people even feel its easier. Like just now I did a few errands and am really in the worst pain with viadin again and I know will pay for days just from doing more errands. I just hope they can get me in sooner and they said they will try real hard. I'm going to call every few days too. I just need to get through these days and am trying to push more but the pain in my leg is excrutiating but the rest of my self feels so much better when up.Your all so wonderful and thank you. I will let you know.

Well, I will be keeping my fingers crossed for you. I am in hopes they will work some magic for you.

You will find this a wonderful place. If you do have to stay in a hotel at first, the Cleveland Clinic Guest House is across the street, sort of. I say this, because the hospital is not just one building, but an amazing huge array of spread out buildings, but it is very, very easy to get around. The staff at the hotel is very knowledgeable and helpful and there is a deli in the hotel.

There are shuttle buses to take you to any of your appointments. They run from the hotel all around the hospital to different stops on a regular basis. When I was there, they had a pre-scheduled sheet of appointments made for me, and I went from one appointment to another, then in between, back to the doctor's office, and then to the hotel. This may not apply in your case, but as I was pre surgery for my aneurysm, I had a lot of testing to complete that was not done in my home town.

This is the easiest place to stay, even if you only need one night before you go into the program, unless something has changed. I was there in 2000.

Take care,
Cathie
P.S. Hope you will have some way to check Internet when you go, so you can post occasionally, but if not, know that we will all be thinking about you.

Thank you. I'm not sure where I will stay the intake lady said when I know more a firm date she will help me. I will have a car though cause the program is m-f full days but weekend off and I will be there 3-5 weeks. I live only 3 hours away. I'm going to bring my laptop I pretty sure so will check in. Now its just waiting to go and hoping for an early cancelation. I'm trying to stay hopeful but be realistic. Any progress I will be happy. I have been pushing the past few days out trying to get ready. I'm having a hard time obsessing that I make things worse though all docs tell me I need to push out of bed and the pain is so anxiety provoking. I never know when the pain will get where I can't even talk or when my other dizzy/spacy feeling comes on. I hate that and want to be more regulated like at the program. Well thanks again.

Any chance that any of the meds could be causing the dizzy/spacy feeling as side effects?

Cathie

Oh Danniella
 

You know how much i have wanted you to go there,i been hoping
and praying. It is a wonderful place and is rated so high for that
pain Clinic. And it will be close to home and did i tell you how good. Ha
Chant there will be a opening over and ovrer and there will. Oh this
has been a good day..I want you to get out that door when they call
i don't care if your only scivvies,just make sure there clean. D just do
whatever they say,you can do it. I remember reading when Billye went
to Mayo,it was such awfull weather but the Neurotalk folks talked her
through it. And she was so brave she did it all. Aug is the lucky month
in our family so i'll just give it ti you...:D :D Well we will kept praying
and chanting. :hug: :hug: Sue

My very best wishes to you, i hope you get in early :)
good luck

Thank you all and your all wonderful. I actually talked to the intake yesterday and she said there may be a cancelation next week or in at least the next few. I told her I will drive there in the middle of the night if I have to. It is only 3 hours away. Sue that was funny. I said I would walk out the door then. I have been pushing the past few days to get ready and am at least able to as before rarely left the bed but the pain is so horrible. I come home crying and back to the vicadin after one or two places. The dizzy and neck though feel better when up but the ankle/foot just feels like it will explode.Some of the dizzy they say may be from meds especiallu the on and off of vicadin. I have so much anxiety and fear it will get worse by doing this and doing more. I'm trying to take 1 day at a time. Its hard when the pain sets in to where I can barly make it to the rest room. So up and down but trying to stay positive and more hopeful. Thank you again for your thoughts and wishes.

I just wanted to let you all know my date was moved to Mon and then if all goes I should start that day. I'm so nervous and anxious. I'm obsessing too which I hate. Trying to stay calm and hopeful. I will keep you all updated. I hope all goes smoothly and accepted and in the long run helps with relief and a direction towards a more normal less painful life.Thank you

To Daniella
 

Daniella,
I just wanted to wish you good luck on Monday. I hope the treatment helps you tremendously. Please do let us hear from you.

Billye

Oh my
 

Now i'm sure you will do fine,and this is just to important to let a panic
attack slow you down. i've been through them,there not fun,but all
that pain is worse. So just visulize all of us helping you out the door.
And the plus part is it's not far from home and i know you can do it.
I was a cheerleader in High School that was back in the push um back
way back, just keep saying that to any panic attacks. Please get soom rest
and let us help you if we can, which means keep in touch. You do this
and i'll tell you about my date with the Dr. on Sat. that should put you
in a world of laugter..:cool: Sue

Thank you all your so amazing. I too have had panic attacks and I agree not fun. I know I can work on my coping mechanisms to get through that. Just hard to shut my mind off when in pain,anxious,can't sleep. I had to do a few more things which in the past 4 days i have done more the in the past 5 months so my leg is going to explode in pain. I so hope I am not making more damage. It hurts so much. I know I need to do this and just hope all goes well and accepted with relief.Sue I didn't know you have a date on Sat. I will be all ears. Is he a neuro that would be perfect. Just kidding. I used to joke about marring a therapist so for free therapy.Silverlady how are you feeling? You have such a great sense of humor and all of you are so amazing.
Thank you all.You all make me feel less alone and I hope everyone there is nice like our family here.

for Daniella
 

Daniella,
Thanks for asking. I'm o.k. got the meds back in my system. I'm still sitting on my buzzsaw which is very distracting. But it's o.k. It's been there for two years inspite of everything we've done to try to remove it.

Are you all packed and ready to go? I know you are excited. Hopefully it will open the gates to the rest of your life. And I for one wish it to be a really good one. Keep eating and living healthy. You'll get there.

:hug:
Billye

Thanks your so sweet. I'm glad your hanging in there. I'm sort of packd but have all my stuff. I'm in a lot of pain today from doing so much for me which is a couple errands extra. I really fear I'm making it worse. Trying to stay in the moment cause all the what if;s or if it doesn't help you know. I'm trying to think positive and am willing to work as hard as it takes. Thanks for the encouragment and trust me I'm an eating machine. You could not imagine. Take care.

Maybe she could rent a bus for this trip... Then we could all run up there and ride over to Cleveland with her. We could even take Sue's Bob with us... This would be great support!!! I am positive we could get in a LOT of trouble there. I know there are a few on this board, besides myself, who are, no doubt, quite capable of that... :) :) :) MrsD would have to go, because she always keeps us out of real trouble...

3-5 week vacation in Cleveland... A bunch of people with PN... Hmmm... I don't know if Cleveland is ready for this or not... Heh heh heh....

Cathie

Daniella:

Just wanted to hop on board and give you a hug.:hug:

Take care,
Mel

Cathie
 

What a great idea and yes Bob would have to go,he's a lot of fun.
D my date is with a Cardiologist,i try for a Neuro but couldn't find
one that i liked. The Dr. name is Dr. John Best and the funny part is
he's 48 and i'm 60. He's friends with my oldest son but he knows all
my kids,let's say i tell them next week. Ha Well just think he will know
if i'm having a panic or heart attack. I told Bob he and one of the girls
would have to go,he thinking about it. Oh boy when is Sat.:eek: I
got cute new shoes,if i can make it on the walker,oh geeez. Yep
look around for a bus we can get in trouble and visit you. Cathie you
get everybody to together and Mel you make us fancy bra's;) Sue

Thank you and I wish I could bring everyone. Your like my adopted mom's. I wish I could take my mom with me too. She wil come for family therapy though.I ask her what she will do when I don't call her 10 times a day. Can you imagine all of us at the local pharmacy filling our meds? They would run out. Sue that is so cute I hope it goes good. Age is just a number right. My mom dates and goes for younger but as her daughter I have mixed feelings but just as long as your safe. I tell her guys are not like when she was dating. Good luck and I can't wait to hear.I'm sure you will have a blast do you know where your going?
Thanks again

Well I'm all ready to go. My mom came and helped me. I am not bringing my laptop cause fear it will get stolen. I'm going to go to a library though on the weekend or when ever I get a chance. I really thank all of you for all your support,hope,and info. I hope everything goes and accepted and helps with progress of pain and direction. I will keep you all updated. Stay out of trouble all you guys.

Daniella, I just got back from vacation and checked in. I am so happy for you. I am praying for calm and peace for you. I know how horrible the fear can be. No fear, baby. You are stronger than you will ever know from what you have endured.