chronic pain and the future

I'm 18 and since a week before December 17, 2007 i remember this date because that is the night i was diagnosed with bone cancer which wrapped around my spinal cord. because of this radiation damaged my spine and now i have chronic pain throughout my body radiating from my cervical spine the pain makes me feel like all of my hope and dreams are over. I have been working so hard to get into a college but i can barely walk in the mornings and i cant get a job to pay for it, i cant even go to school most days because of the pain. i just want to know if theres anyone out there that has the same problem? its kind of ironic that i wanted to go premed and now im in the hospital more than my doctor.

Hi Nicole and welcome to the forum. I'm so sorry your young life has been filled with such horrific conditions and I know it's got to be difficult to see light at the end of this tunnel but you have survived and done so through 8 years of a ungodly disease that robs millions of people every day! That's something in itself to rejoice about. Yes your young and yes living with pain is not the road you or any of us would have chosen had we been given the chance. Luckily you have lived to have a good chance at a better future in adulthood then your childhood has been an there's still time at your age. Does your school system not have a inhome program for the times you can't get there? If you have not graduated high school you can look into adult ed to at least obtain your GED and many colleges today offer every kind of course online and I realize that the social mix is something your not going to get but there's time for that as well when you feel well enough to take on-campus courses. My oldest daughters finishing up her bachelor's online and she skypes with a few professors and TA's. Your bound to qualify for student grants and there are even scholarships available to kids like yourself who have survived childhood diseases and missed lots of education from those.

As for the pain we all have some pretty different ways of dealing with it as HT said but nerve pain is one that is the most difficult to treat however if you can get it under control you will have breaks in the bad episodes that allow you to just breathe. I as some others use hydrotherapy and this is my number one defense,I got extremely lucky early in the game and had a therapist who specialized in distraction techniques and I learned a lot and many times it is all I have when I have exhausted all else. Lyrica is the med I have been most responsive to as far as the neuropathy meds go,didn't have much luck with neurontin and cymbalta though. Are you taking anything right now to help you?

Wanted to stop in and say hi and welcome you and other's will as well and the forum is just as much a tool as anything else I use because here others understand,dont judge and support me when I can't push through on my own.

Nicole. The future isn't guaranteed for any of us. I struggle mightily to will myself through each tick of the clock. Just realize that whatever future there might be, the best you can do is forge it from the now. There are plenty of home study degrees, scholarships for the disabled, open courses that are free, and even jobs that can be done entirely from home. For me, the important thing is to find the person I love when I am at a time where I can't go forward and get their help to run down the clock until the future arrives. It's one step at a time. No one wants this, but, in a sense, it's the way everyone has to live.

It's been helpful to me to talk to a counselor to help sort my thoughts on topics like this. If you see no future it's pretty easy to start down some self destructive paths. You are strong enough to have gotten this far. Just keep putting one foot in front of the other doing the best that you can and the future will take care of itself.

Best of luck. You are definitely among those who get it.

nvrthesame98 said...
Hi Nicole and welcome to the forum. I'm so sorry your young life has been filled with such horrific conditions and I know it's got to be difficult to see light at the end of this tunnel but you have survived and done so through 8 years of a ungodly disease that robs millions of people every day! That's something in itself to rejoice about. Yes your young and yes living with pain is not the road you or any of us would have chosen had we been given the chance. Luckily you have lived to have a good chance at a better future in adulthood then your childhood has been an there's still time at your age. Does your school system not have a inhome program for the times you can't get there? If you have not graduated high school you can look into adult ed to at least obtain your GED and many colleges today offer every kind of course online and I realize that the social mix is something your not going to get but there's time for that as well when you feel well enough to take on-campus courses. My oldest daughters finishing up her bachelor's online and she skypes with a few professors and TA's. Your bound to qualify for student grants and there are even scholarships available to kids like yourself who have survived childhood diseases and missed lots of education from those.

As for the pain we all have some pretty different ways of dealing with it as HT said but nerve pain is one that is the most difficult to treat however if you can get it under control you will have breaks in the bad episodes that allow you to just breathe. I as some others use hydrotherapy and this is my number one defense,I got extremely lucky early in the game and had a therapist who specialized in distraction techniques and I learned a lot and many times it is all I have when I have exhausted all else. Lyrica is the med I have been most responsive to as far as the neuropathy meds go,didn't have much luck with neurontin and cymbalta though. Are you taking anything right now to help you?

Wanted to stop in and say hi and welcome you and other's will as well and the forum is just as much a tool as anything else I use because here others understand,dont judge and support me when I can't push through on my own.

Thank you it is nice to just hear from people that know what I'm going through I take a plethora of meds for my neuropathy pain I take a high dose of norotriptyline because Gabapentin made me ill and gave me fainting spells. The norotriptyline isn't much of a difference but at this point I don't have much of a choice.

I don't have any magic answer, and I also worry about the future.
I was diagnosed with Juvenile Rheumatoid Arthritis as a young kid. I laughed at your statement about being in the hospital so much. I'm in usually every 6-8 weeks. Even the housekeeping staff know who I am :)

I know school looms pretty big in the future. Just remember, a degree doesn't have to be earned in 4yrs. I struggled in college, and I only told one professor(who had lupus) what was going on. At that time, mainly my joints were the big issue, thankfully the organ stuff held off. I know I was trying to prove that I could keep up and pretend that nothing was wrong. But it might have been a good idea to let other profs know. I went to a small college, about 4000, which also helped. I didn't have to hike halfway around the world for class.

You've been thru a ton, which means, even when you don't feel like it, you are pretty strong. One thing I try to tell myself, is that the future will happen, regardless of my attitude, health, or really…anything. If you read my post, you will see that it's easy for me to say it, but I'm working to follow it as well.

stick around, and keep posting. I hate that you need a board like this, but for those of us, it's a good place to be.