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Chronic Pain
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Posted 10/14/2015 7:48 AM (GMT 0)
Every night I sit up in my bed and think I have been so hopefully that a new procedure would cure my chronic pain- which I have been trying to overcome since the age of ten when I was diagnosed with Ewing sarcoma bone cancer on my cervical spine- but i can not afford it. I recently posted my first post and as I read the comments I sobbed I'm not sure if it was because I feel like my life has been put on pause for 8 years or because it's the first time I have actually felt like someone understands how I feel. I go to high school and the teachers say I look good but under that fake smile I am fuzzy from the amount of medication I have to take to get through the day which many people say for a 90 pound 18 year old I shouldn't be taking Norco 10's three at a time but then I remind them I also shouldn't have had to quit dancing and art (which made me who I was) but I did. So many people look at me as if I am being over dramatic and its "all in my head" it is so hard to have an invisible illness and the only time people notice it is when the tears flood my eyes and my body starts to tremble. They also don't realize that it's not just intense pain in my spine. The neuropathy pain shoots through my body, the side effects of the meds is enough to knock a normal person on their butts, my hypothyroidism makes it hard to keep going, the effects of the chemo and radiation along with my chronic pain chronic fatigue, suffering from depression and pain anxiety as well. I have to explain what this is more than I say my own name I'm sure a lot of people experience this, in the mornings the pain is so awful i often stay in bed for hours after I have woken just so I don't have to feel the pain of getting out of bed. My doctor recently told me that there were injections that might drastically reduce my pain but it is very expensive and my insurances are not going to cover it. I know I might sound crazy but I feel like I am not going to be able to live with the pain of it doesn't get better. I have dreamed of going to Purdue university for chemistry (my passion) but I can barely get out of bed to finish my senior year of high school. I am missing so much and I am very involved I am my class secretary and in many extra circulars. I am drowning in pills and my moms crazy ideas she gets off the internet. I'm 18 and I have a walker. I have read posts from this site for months but now I have the courage to share my story and maybe it'll help me in the long run.

Post Edited (nicole0718) : 10/14/2015 2:08:52 AM (GMT-6)

Posted 10/14/2015 8:32 AM (GMT 0)
I think we all chase that elusive remedy to our discomforts, I don't know what it's like to just not feel some kind of pain somewhere. And yea we who suffer get an addition slap in the face as the financial burden these treatments come with. Sometimes I think about how much Pain I have endured over the years and survived, it's amazing.
Posted 10/14/2015 8:39 AM (GMT 0)

crohnie1985 said...
I think we all chase that elusive remedy to our discomforts, I don't know what it's like to just not feel some kind of pain somewhere. And yea we who suffer get an addition slap in the face as the financial burden these treatments come with. Sometimes I think about how much Pain I have endured over the years and survived, it's amazing.

As I get older my doctors are becoming increasingly difficult especially about my pain medications. I recently had surgery to try and repair some of the damage from chemo and radiation( unfortunately it didn't help) my doctor cut me off of my medicine a month later. And before the surgery I was already on a whopping dose. I am hoping to find a doctor who won't treat me as a child but as the adult I am. I am going to stay hopeful for my loved ones but I can't help but thinking what I would do to be able to go out and do whatever I wanted for just one day without pain.
Posted 10/14/2015 11:03 AM (GMT 0)
I'm glad you are at least finding some moral support from coming here. That is a big part of it, knowing that there are other people who deal with what we do and talking through our coping mechanisms.

There is definitely a stigma to the meds. Many people don't seem to believe pain like this exists. People give you lame suggestions, as if you haven't thought to try anything other than ibuprofen. My mom even gives me repeated lame advice. What you need is empathy. Someone to say "I'm sorry. That is terrible. I'm here for you." Not sure where you are, but here in the US they recently cracked down on narcotics and opioids. When I first started on them about 2 years ago, they could call them in to the pharmacy. They would give me 1 refill per script. I could call them and they would call in a refill. Now I need to pick up the script at the doctors office. Thankfully anyone can pick it up for me, as they close at 4pm and they are 2 minutes from my house and 30 minutes from work. They also don't seem able to give you refills anymore. You need to go in for a new script every time you need a refill.

It is a tough road, for sure. We live in an amazing time though when new discoveries are being made every day. There is hope for the future. Be strong and fight hard every day. I pray that you find some kind of relief.
Posted 10/14/2015 1:31 PM (GMT 0)
Nicole, hello and welcome to the forum. Dance and art do not define you, nor does pain! We have to learn to do what our bodies will 'allow'. I have had to modify many of my previous activities in order to still participate in them. I love to garden, but my body cannot do all that it used to. I have been 'consulting' with a local landscaper, helping him research and choose plants for particular situations. I call it 'gardening by proxy'! After the installation, I get to go by and see how it all worked out. In this way I can still satisfy that part of my creative side. Stretch your mind, see how you can modify things yourself. You may have to switch from canvas and brushes to some other medium. You may 'choreograph' a dance for disabled folks. Help others perception of what 'disabled' means.

As for your doctor's concern over your medication, it is understandable. Aside from the constipation that they can cause, and the subsequent problems that stem from that, they can wreak havoc on other organs as well. They've taken an oath to 'first, do no harm'. Your young age makes that more difficult. This is probably not what you want to hear, but I hope you will take it into consideration.

None of us want to be experiencing this pain. This frustration. That's why we come here. That's why I'm glad you are here. Keep posting. It helps.
Posted 10/14/2015 6:01 PM (GMT 0)
Hi Nicole, what you are experiencing emotionally many of us here have been there. Wake up & wonder if its worth pushing through another day & the answer is yes. So, we do. There are so many different sides to living with chronic pain. Healthy people don't always understand, but thats ok too, because I am sure there are days you yourself have problems understanding it. I always say if I don't understand it, how can I expect someone else to?

Yes, it is sad that you have had to give up things you love but there has to be other things out there that you can do & it will hold your interest. Finding ways to do things differently is something CPers are experts at. We do a lot of improvising when possible.

Perhaps for now why not concentrate on graduating school & make that your goal. When you achieve one goal, make another goal & so on. You may surprise yourself.

You need to know that the drs are not singling you out by not wanting to give you a lot of pain medication. Granted your young age is a huge factor because the biggest fear is with your age say 10 yrs from now there may be nothing left to try you on. We build up tolerances to pain meds & they stop working. They either change the meds completely or increase them if they can. We also have drs being monitored that write scripts for pain meds. & they are getting stricter & stricter. You are young & do not know all of the new politics involving treating chronic pain patients.

Try to give your mom a break, I am sure she is very worried about you. She would much rather it be her in pain than you I am betting. It is hard for a parent to see their child hurt.

Take care.
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