I usually try to limit blog posts to things related very closely to occipital nerve stimulation, but I'm now faced with a situation that I want to discuss. It's not directly related to ONS but I think it's important to talk about.
I was informed on Tuesday that my supervisor killed himself this weekend. He suffered from chronic back pain. He only moved here last January, so I don't know his history, but from discussions with him last summer I know he's been to many doctors and tried many things. He had a metal rod implanted in his back at some point so he has more of a history than I can begin to imagine, I'm sure. His condition deteriorated quickly at the end of last summer. He got to the point where he could no longer sit or stand for more than about 5 minutes at a time, so he was essentially a prisoner of his bed. He was taking a lot of heavy-duty painkillers just to get through each day. He was not married and did not have any family in the area. Someone from work would go over once or twice a week but they wouldn't stay long so I think part of his downward spiral must have come from feeling isolated and alone. I guess he decided it just wasn't worth it anymore.
However, I do think he gave up on himself a long time ago. We had a discussion last summer about a doctor's appointment he'd been to and the doctor has said something along the lines of "you need to get something figured out. If you feel this way now (he was in his 40's), how are you going to feel when you are 75?" And my boss said "I hope to god I don't live to be that old." I know people made suggestions to him of where to go for treatment, and offered him transportation but to my knowledge he didn't accept much help.
The moral of this story to me, and why I wanted to share it, is this: no one can help you if you don't help yourself. I understand chronic pain. I've been there. Last winter I myself was feeling extremely low and got to the point where I couldn't envision a future for myself because every day was just filled with pain. I was not suicidal but I certainly was depressed. But I (luckily) got to the point where I got mad, not to the point of giving up. I refused to "live" this way and realized that I had to go find help for myself, whatever that took. That's why I traveled 1000 miles and spent 4 months away from home. And if it would have taken 4 times that long, I still would have done it. I had been to "experts," and no, they didn't help. You have to keep searching until you find the right doctor for yourself. Just because someone is labeled as a specialist or has been treating "your kind of case" for 30 years doesn't mean they can help you. You don't have to stick with a doctor that isn't helping you. I wasted way too much time doing that. If they don't help you, move on and try the next one. But if you just sit around wallowing in misery and self-pity, you will never feel better. No one will come knocking on your door saying "I think I have a solution for you."
Wow, I guess this turned into a bit of a lecture but it's just something that I feel very adamant about. I'm very sad for my boss. In all honesty, I didn't know him very well at all, but it still makes me sad that he felt death was the only way to end the pain. I hope to inspire people to take a different path than that, to give them hope, because you don't have to just give in. But you do have to be willing to help yourself.
That is so very sad. My dad has had chronic and sometimes severe back pain for as long as I can remember luckily it doesn't sound as bad as your bosses was. Hopefully he is at peace now.
ReplyDeleteI agree with you on searching out a suitable treatment for yourself. It's easy to say this is as good as it is ever going to get. It takes guts and effort to get out there and make things better for yourself.
It's tragic that someone in this day and age could not get adequate pain managment.
ReplyDeleteOne of my greatest fears was the fact that I am 50, and narcotics hardly touched my pain - what would my life be like at 60, at 70, at 80?? (welll realistically - i've already had cancer so 80 is probably out of reach).
I became agressive in my search for a solution and found a study I qualified for. I emailed specialists with abstracts on pubmed, I posted on forums, called famous clinics and talked with intake clerks and nurses until I found an answer. I think some people get so far down they can't do this - it takes a lot of energy!
I'm so sorry about your boss. I know someone who has a similar history and similar pain issues. The difference with my friend is that he has a large supportive family and lots of friends who do their best to keep his spirits up.
ReplyDeleteI needed to hear what you wrote in this post. My next appointment with my prescription-phobic doc isn't until March 15th, and I'm completely out of the one medication that he agreed (in early October) to prescribe - tramacet. He gave me 30 tablets intended to last 6 months.
Of course, they are all gone. Also, they didn't even touch the pain. Over the holidays my pain was through the roof and it hasn't let up. I don't know if I'm just stubborn, or if I'm determined that he not label me an addict - but I should have called him to talk about pain management months ago. I haven't done it.
I've lived with unbearable, ER-worthy pain, rather than go to him with yet another sad tale of woe about my level of pain. My quality of life is affected. My work is affected.
I'll call first thing Monday morning.
Thanks.
HI, Your blog is inspiring. I am having a similar experience and my life is on hold. My doctor is now talking about an electronic nerve stimulator. Glad to hear you had success.
ReplyDeleteI wonder why didn't you try the Radio Frequency Ablation? My doctor said nerve stimulators are better becuase with ablation they can grow back and cause more pain. I know its a quick procedure, but all those wires and having it implanted and recharging the battery seems complicated. How happy are you with the stimulator?
Hi John, thank you for your kind words.
ReplyDeleteI did not try radiofrequency nerve ablation for the precise reason that you stated. I am in Wyoming and my doctor is in Chicago. I was told that the RFA would work for approximately 6 months. It's unrealistic for me to travel back and forth that much so I asked for a more permanent solution.
I am SO happy with my stimulator. I wish I would have gotten it years ago. I suppose the surgery is complicated, you have to go through recovery and all that of course, but now the time spent dealing with the stimulator is minimal. I charge it maybe every 2 weeks, although honestly I haven't had it on as much recently as I did last fall so now I'm probably only charging once a month. Other than that I really don't think about it much. It's been an excellent solution for me.
If you want, email me at onstim@gmail.com and we can talk more.
Sue,
ReplyDeleteI'm so glad I made this post. It was actually a bit of a hard thing for me to write but I'm glad I did, and I'm glad it had an impact on someone. Did you call your doctor this week? If you would like to visit, please feel free to email me at onstim@gmail.com. I know it sometimes helps to have someone to commiserate with.
I didn't end up calling, but only because we were wrapped up in the hurt of putting our beloved cat Ouzo to his rest. He had been very ill, and we had to do the hard but merciful thing of releasing him from his suffering.
ReplyDeleteNow it's Thursday night, my doc doesn't work Fridays and I'm looking at Monday for that call - but yes - I will be making it, no question there. Somewhere along the way I lost my assertiveness as a patient with legitimate and real needs for pain management. Your post reminded me that I don't need to suffer because of my own shyness about asking for help.
So, thank you.