Subject that tends to make people unconfortable

Something I have learned that makes people very unconfortable is when you mention you are so depressed from dealing with TN and the resulting pain, you have become suicidal. With just cause it tends to send people into major freak out and it seems they tend to be more hurtful, than helpful just based on the fact they do not know what to do.

Today I called the Suicide prevention help line. While the number is on the main page here, I got the number from the Veteran's hospital. I have been going through a very emotional week. What put me over the edge was learning my neurosurgeon has left the VA and they are not sure yet who will be taking his patients. This at a time I am fighting for a referal to OHSU. What I see now is Dr Eller knew he was leaving and wanted to make sure I was in good hands before he left. Did not happen. VA denied the referal. Have been in pain constantly and am not sleeping well. Not a really good combanation. As a matter of fact it is a major depression just waiting to happen. While happen it has. Went into work and a couple of people asked me what was wrong. I am known at work as being "Miss Sunshine" So, when I do end up depressed people do tend to take notice. Thing is I really did not feel talking about it. It is hard to describe. Growing up I was never allowed to complain. We all have our crosses to bear, mom would say.Being in the military it is really pounded into one's head that you do not complain. Needless to say I have learned to be quite stoic and stuff a lot of what is truly going on with me.

When I first picked up the phone and called the hotline I almost hung up when the phone started to ring. One thing that really helped was the fact there is a extension just for veterans. It is staffed by veterans and it really helped to be able to talk to someone who knows how hard it can be to overcome military thinking and reach out. Julia ( the lady on the other end of the phone.) sent a urgent email wth the details of our conversation to someone here in Portland who handles VA claims. She told me when a veteran is at the point I am at the VA is more apt to stand up and take notice. I am waiting on the call from the local VA rep. Will let you know how it goes.


Hi Sarah,
I’m glad you called that number and I know they will help you. I’m sorry you feel so depressed. I have battled the depression with TN also and it’s awful…the hopelessness is such a terrible feeling. In the past if I felt depressed I trained for a 5K or painted and remodeled a room in my house, anything physical to fight the depression. If I did something like that now I would be in enormous pain. Being raised on a farm, I was taught to work hard. Relaxing was not accepted. I find myself feeling lots of anxiety and not sleeping well also, which like you said only adds to the depression. Within the past four days I have taken a small dose of xanax in the morning and evening. It not only takes the edge off, but it also seems to help with the pain for some strange reason…maybe because I can finally relax my muscles and sleep better. Hang in there. I hope you hear from the VA rep. soon and know you are not alone. Let us know how you are doing and I’ll be sending good thoughts your way:)

Google “Tom Robinson the Chronic Illness Coach”…I somehow found him on the internet and subscribed to his website. He gives us a different twist on the things…maybe a new way of thinking which can help us.

Spoke yesterday to the VA rep. Thing is I learned there is a way to appeal the decsion. It will take some time, but was given a good plan of attack. The rep said something interesting. He commented that most veteran’s want narcotics, I was the first vet he has talked to who does not want them, but he agreed with my history of substance abuse they are not a good ideal in my case. Will have to fight this through primary care. My primary care doctor rocks and I know she will work hard to make things happen.

Still in a funk, but today was the 2nd day in a row, I got up, got dressed and got out. Am grateful for small steps.

Thank-you for your support,

I have had you in my thoughts and prayers. I hope a decision about your treatment is made very soon. And as we discussed, I hope it is a favorable decision. We all know how discouraging it is to live with this pain. And it is so much worse for some. It is great to be able to discuss it with others who know the pain.

geez Sarah…this is the first time I have signed up on a TN site…I was feeling sorry for myself…but you have been through so much more then me it is hard to imagine…I am at a loss for words

I maynot be in the military but I too am from a family that believes if your still breathing and not bleeding profusly your fine. So when people say how are u, it has turned into another greeting, they don’t actually want to know and just ask to be polite. I find that frustrating. There are times when I am depressed and I mention that to my bf and he actually said “your not suicidal Janet”. I was shocked!! how in the hell do you know? I try to tell you whats bothering me and how i feel and he tells me “don’t worry about it”, which translates to me as I don’t care. I have been actively trying for 2 years to get a psychiatrist and i think the only way to get one quickly is to do something desperate.

Damn Sarah. I know it’s hard and I can’t imagine going through this without narcotics. I hear so many people taking large doses of Neurontin and Lerica, but I can’t handle the Lerica. Makes me dizzy. I was on so much pain medicine when I had the MVD. I never saw my doctor after the surgery. They needed the bed so I left with a walker. I stayed at a friends house on Sanibel Island, only 2 hours from the hospital. While I was there my husband decided to detox me. On the third week he brought me back to the doctor who yelled at him, “she’s detoxing” … now is not the time. I get upset sometimes because my husband made me do it. After Waguespack said, 'I know dr. van loveren and I’m afraid you will get Anesthesia Dolorosa." What the heck did he know? Why didn’t my family believe me? I’d been to six Neurosurgeons who did not recommend this surgery. If you shop around long enough you will find someone who will do it. That’s what happened to me. Seems I had this great life going. Scuba diving all over the world, spending months in Papua New Guinea, inducted into the Women Divers Hall of Fame. Selling footage for Hans Hass and working with diving’s greatest… I was only 40 when I was shot down obliterated; my life is over now. I can only enjoy moments. I am very depressed tho I try hard not to be.
It’s late, I should try to get some sleep. Sarah, stay in touch with me. I need you. I also get what Janet says, “I have a family that believes if you are still breathing … you are fine”… fortunately my mother is the most understanding. She saw me shoot to stars and she saw me fall. I am just glad I have some people to talk to now who I believe won’t abandon me.

Hi Sarah, I was just reading your post. I’m so sorry that your having so much pain and problems getting assistance. I hope everything is going better for you.

Sarah, so sorry that your struggling and having a tuff time. it is hard to understand why some people are given such a difficult thing to cope. i am hoping that one day in near future the experience of suffering is gone for you and all of out fellow tn suffer’s. take hope and know we understand your situation. think about taking it minute by minute. i am hoping your treatment plan gets sorted real soon. i will be keeping you close to my heart and in my prayers. take care

Real break through did come when I made a conscience decsion to not dwell on what is happening and try to focus on the positives I do have in my life. One day a week I go to a bead class. On the days when I hurt too bad to get out, I do my bead work at home. Finished my first project. Did it at home over a couple of days as a form of distraction. It has 500 seed beads and I put them on one at a time. Am going to send it to my mom for her 12 wedding aniversary. Am also teaching myself how to knit. Now that is quite a story for another day! :0)