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Old 10-07-2008, 05:00 AM   #1
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PM Luncheon & update on new med.

Hello everyone,
I wanted to let you know that this saturday I will be attending a luncheon hosted & sponsered by my PM doctor. I was encouraged to go by one of the nurses at the surgical site where all the procedures are done.
This is suppose to allow my PM & a collegue to go over PM & allow CPers to perhaps meet. I am looking forward to it & hope to learn something I can share with you all. If I am to understand he does this lunchean yearly for his patients & the nurse said she thinks I would get something out of it. She also spoke to my sister & made her promise to get me to go, it was obvious she thought it would be good for me.
I am curious as to what it will be like & hope to learn more about PM.

I am still in alot of pain but have had abit more relief. I think it might be thanks to the Avinza. It took several days after starting it. I am almost afraid to say anything but hopefully it lasts. I have been able to cut one dose of percocet out & go abit longer some days then the 4hrs. I wish it was more but I will take what I can get for now. I will have to cancel the back surgeons appointment for now which was tommorrow, we have not received the information on the cobra yet since my husbands layoff, not even sure if it will be affordable. I am praying it is. My husband spoke to another gentleman whom is laid off to, through his place of employment it was $1400 per month for cobra. My husband thinks it may be less for ours, at that price no way could we afford it.
I am on the lowest dose of Avinza & wondering if that is where I will stay. Dont really want to take a higher dose of anything but would love even more relief. Think about you all daily & keep you in my prayers.
God bless & hope you are all doing well, Sammy

 
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Old 10-07-2008, 05:57 PM   #2
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Re: PM Luncheon & update on new med.

Hello Sammy....Sounds as if this luncheon will be interesting. I would definitely go if my PM Doc offered one. I'll be very curious to hear all about it afterwards. Your Doc is going out of his way to keep his patients informed.

Take care,

Ex

 
Old 10-07-2008, 08:01 PM   #3
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Re: PM Luncheon & update on new med.

Sammy, I just want to say, having dealt with cobra before, that it's not cheap.
Good luck and I hope you learn a lot at your luncheon.~Mush
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Old 10-08-2008, 07:04 AM   #4
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Re: PM Luncheon & update on new med.

COBRA by law should be offered for 18 months for any EE that left employment for ANY reason

 
Old 10-08-2008, 10:05 AM   #5
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Re: PM Luncheon & update on new med.

Oh Sammy - bless your heart, an extrs $1400. a month with your husband being laid off - I know the COBRA laws are there for your protection but it is unrealistic for anyone to believe that you are able to come up with that much extra a month with being laid off - ugghh - sometimes things are so rough - I will be praying for you that things get better
huggs Aver

 
Old 10-08-2008, 08:18 PM   #6
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Re: PM Luncheon & update on new med.

Oh Sammy, it is so nice to log on and read that you are experiencing some relief no matter how small it is. I pray for you each day as well as many others on this board. I pray that as the medication enters into your blood stream and your blood plasma increases that you feel better each day.

Take care of yourself and I hope the luncheon goes well. Can't wait to hear how it goes and if you find it helpful or not. Sometimes just knowing that others are going thru the same things helps tremendously with our pain levels.

Blessings,
Pepper

 
Old 10-09-2008, 05:15 AM   #7
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Re: PM Luncheon & update on new med.

Thanks everyone,
I am really hoping I gain some knowledge at this luncheon.
I have had an increase in pain in my back & neck, which is triggering headaches. There is a certain area that feels bulged in the neck when these headaches are present. THe PMs office called to confirm my next appointment & said he would go over the MRI results then. Although he wanted me to see the back surgeon first. Now I will have to call & explain that the surgeons appointment had to be cancelled until cobra can be picked up. So not even sure if I will be able to keep the PMs appointment this month. What a mess.
Pepper it is nice to hear from you & what you have went through gives me hope that I can obtain better pain control.
I would love to just get up & be able to do what I want one of these days.
I am afraid that with my pain increasing & appearing in other areas that it will only get worse. My goodness there has to be something causing all of this. I can feel it in my back & neck, I know its there. I wish these doctors could find the cause. I get so tired of wondering. I am learning through this board that the body is so complex you really need a good doctor who cares enough to keep looking for the cause. I am hoping that at this luncheon I can perhaps learn alittle more about my PM doctor.
I appreciate all you prayers & really need them at this time more then you know. I pray for you all to. Its hard some days to have hope but with out it what do we have? So I just keep hanging on & placing my faith in god to keep me going here. I look at others & know it can always be worse & count my blessings. Living with CP can really show you to appreciate certain things.
God bless, Sammy

 
Old 10-10-2008, 09:59 PM   #8
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Re: PM Luncheon & update on new med.

Sammy,

Has your husband signed up for unemployment yet? And have y'all checked into Medicaid? It seems like they should be able to help, since you have no income right now.

kat

 
Old 10-11-2008, 06:32 AM   #9
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Re: PM Luncheon & update on new med.

Thanks ladies just for caring.
My husband has filed for unemployment but here medicaid is not just handed out, cant have pretty much anything, house, bank accounts & so on.... So unfair to work so hard, all your life & have no help. Lost all the life insurance we paid on for years & years, everything but I am trying to have faith that in this state we live in something will come up. It is so bad here. I have seen so many loose everything & each time have prayed for them. Breaks my heart.
we had to tell my youngest who is 15 & she knows how devasting it has been here in this state, she just cried. She has such dreams of going to a decent school & I worry for her. All her life, well since 3rd grade she has thought about her future. Sad. I feel helpless to help with this CP. Makes me feel guilty & angry at it all. I have to tell myself it could always be worse, no matter what. We will carry cobra on me because we dont have a choice for now.
I am not really feeling up to going to this luncheon, both arms hurt but I am really hoping to learn something & who knows maybe it will do me good just to get out with others who know what its like to struggle with CP.
God bless & thinking about you all. Sammy

 
Old 10-11-2008, 02:33 PM   #10
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Re: PM Luncheon & update on new med.

Sammy,

One thing you shouldn't worry about is your 15 yr. old's education, there are always ways for kids to go to college now days. So please don't increase your pain by stressing over that, and reassure her that she will be fine. Seriously for any kid that wants to go to college, there is a way to get there. Hope your luncheon went well today and your pain is bearable.

kat

 
Old 10-12-2008, 09:08 AM   #11
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Re: PM Luncheon & update on new med.

sammy sammy sammy. god what else could possibly happen after all this. i am so sorry you are in this situation at all. not having ins and the way your working ability is and now your hubby is layed off. this is a big test here for ya hon,a big test. these types of situations,as i have found out the hard way,are what give us the abiltys to really get thru things, don;t know how or in what specific way this is going to trun out right now hon,but it will. and you will learn from this and gain something in just getting thru this.

some of the absolute worst things in my life that have happened to me and my son since 1999,have brought with them the biggest learning experiences too. that is the upside to what you are dealing with. i know right now that doesn;t feel like alot,but it will matter at some point,that much i do know hon. hopefully something will work out for your family here. and soon.

i am thrilled to know tho that the change to avinza has been a positive experience compared to how some med changes go. actually getting at least some relief for you right now is really a huge thing hon,really huge. i am curious to see what actually showed up in your MRIs too,something IS there,thats a definite. if by some insane chance there is nothing pertinent,then he needs to concentrate on looking at the SNS angle. i wish there was something i could do for you sammy. you have always been there for me. please let us know how youare doing and how that luncheon went with your PM. i hope you went. just meeting other patients of his and how they feel things are going with him in charge would really be a helpful thing for you ya know? please keep us all posted sweetie. hope the meds start working even better than they already are. you just deserve some relief finally. its been way too long already. hang in there sammy. i am thinking about you even when i don;t always post,you are there and on my mind. marcia
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 10-14-2008, 05:12 AM   #12
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Re: PM Luncheon & update on new med.

Thankyou everyone for caring so.
I never made the luncheon, could not even hold on to soap, shave my legs or anything else that morning, I regret not getting up extra early. Anymore I dont know how bad I will be in the mornings.
I had my neices baby first birthday that day to, made it to that, Bad mood that day. Made it to annointing for the sick mass to, which nothing was holding me back from. I still wonder what look I had when leaving the church our priest ask me if I was alright, he somehow knew the inner battle to stay strong & desperation I was feeling.

Marcia, I have missed you my friend, more then I can say.
I am miserable here. Both scapulas, back & neck. Some mornings one or both hands just dont work. Hurts like mad. What do you think? Spinal? How are you? Think about you all the time to.
Will have to reschedule appointment with back surgeon. PM thinks he may do a test I have not yet had, such as myelgram (sp). Still waiting for MRI results which will get when I go into PMs. The pain just increases in that area & I am ready to loose my mind some days, so I just keep trying to hold on to faith.
Something is going on in there I can feel it in my back & neck. Neck is stiff & been cracking like mad. My back hurts which never did in the beginning of this all.
I am really upset over missing this luncheon, was so angry at everything that morning. Threw my hands up & said forget it. Trying to rush around when my hands were not working well just made me go slower.
Things are tough right now. I have to cancel my PM appointment which would be tommorrow & we will pick up the cobra on me alone this week, reshecdule all the appointments after that. With my husband not working I feel more desperate to get to the bottom of this so I can contribute more.
The Avinza is keeping me down to around four doses of percocet which is better then nothing. I wish I could have more relief in the mornings. I am beginning to dread getting out of bed at all.
I am so sorry everyone I was hoping to learn something to share with everyone here. Next one I guess.
Thank you all for taking the time to care & god bless, Sammy

 
Old 10-16-2008, 04:53 AM   #13
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Re: PM Luncheon & update on new med.

Thank you Sky, what a blessing you are. I am glad you have your faith.
I am really getting alot of strength & support from church right now. They keep telling me to have hope & faith never give up. How can I if I gave up those two things what would I have left. The church says walking with CP can test you & cause some to go to the other side. Well thats never going to happen to me. I know I need prayer & god more then anything no matter what happens I am worthy. Hope I did not cross the line here. Not talking any religion just experiance. Enough, I have faith & always pray for peace & for you all here. Sammy

 
Old 10-17-2008, 04:05 AM   #14
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Re: PM Luncheon & update on new med.

sky, I am still waiting for the MRI results, PM on vaction. Since my huband got laid off I have cancelled the appointments & going to pick up the cobra & reschedule them by next week. Things are tough right now.We are getting kind of slammed with bad news & I am trying hard to keep my chin up. Hard. My PM wants me to see a back surgeon before he will do anything else so that is next. Like all cpers I have my ups & downs. One day I think I can do this then next I feel I am drowning in pain & fear of the future.
It depends on the day. I hope you are recovering ok. you deserve some pain free days my friend. god bless you for asking. Sammy

 
Old 10-17-2008, 08:25 AM   #15
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Re: PM Luncheon & update on new med.

still no results hon? honestly sammy,just go back to the place where you had this done and just obtain your own copy,at least you will actually know something at this point. it has been wayyy too long already that you have just been waiting and waiting for these results which could actually explain alot. i would be getting a bit angry at this point myself if i were you hon. its very easy to obtain that report yourself sammy. i would just do it. i personally am dying to know whats up myself,lol. i just so feel for ya hon and everything you have been forced to have to go thru since that stupid rotator surgery set off this nightmare in your body. you simply DO deserve some answers here,the sooner the better. good luck sweetie,Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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