Hi everyone,
I haven't been on line for a while, a lot going on physically and family wise but thought that I would share what is going on and hope for some advice.
Since it's been so long I'll share some of my story again. I was diagnosed with a non-malignant spinal cord tumor that is inoperable as the nerves are growing through and around it. The tumor will eventually take the use of my legs and well the use of my body from about T11 down. It seems that eventually is coming faster than I had hoped although I have told no one yet what is the point, I don't want my daughter's pity and the docs, can't do anything about it.
About a month ago I was walking through the house and my right leg just went numb it was like there was no leg and of course I fell, right into the wall. I was alone and thought no frigging way not now I want more time the panic was beginning to rise but I held it back and just layed there eventually the feeling came back and I was able to get up. Now this has been happening pretty frequently and I'm beginning to realize the tumor must be on the move again and is pushing or crushing the nerves to my legs, I feel sad and angry but I knew this was going to happen I just didn't know when, ticks me off though I have to much to do and dang it I want my legs!! Okay enough complaining it's life and what I was dealt and I need to make the best of it. Maybe I'll run over someone with my wheel chair and of course I want a motorized one!!!
Family life ahhhhhhhhhhhhhhh what can I say? So much so much. My dear now gone soon to be son in law was diagnosed as being bi-polar in january after he went nuts (okay he was what they call manic but it's nuts all the same) took his jeep stole gas and stole gas all the way to Reno, we live in central Oregon. He got arrested about 3/4 of the way there for gas and go and DUII but the police let him go and gave him a temp license (go figure) after partying in Reno for four days he begged and pleaded to my daughter to come home he would go back on his meds and be fine. Well, being women and learning to be an enabler like her mother (I learned my lesson but it took a long time) she took him back and he was fine until the beginning of May when he decided that everyone else was nuts he wasn't and went off his meds. My daughter fails to understand that this man is an alcoholic on top of the bi-polar. He was drinking heavy and not taking his meds when he walked out the front door and instead of taking his car stole mine (it wasn't stealing mind you he just borrowed it without asking) He got as far as Susanville CA., which is about 2 hours or so out of Reno when he in his drunkeness totaled my CAR! I soooooooooo wanted him arrested but no being the good mom and listening to my daughter I didn't. But as soon as he hitchhiked to Reno he thought people were laughing at him and tried to beat them up and landed in jail anyway. When he finally talked to my daughter he fessed up to a few things, besides stealing my car he had been stealing my pain meds, and money from our stash that we keep for emergencies.
Hello Vickie
It's been awhile!
I'm really sorry to hear of your own difficult health issues and also the difficulties for your daughter & son inlaw. It's really hard at times to get a family member stabilized in their meds for any mental illness and the trying to forgive them for all the shananigans they have drug your loved ones through is a struggle also.
I really wish they could do something for your spinal tumor and all the pain you experience on a daily basis.
I think if I were in your place with your doctor, I'd make an apt and go in to sit down face to face and discuss your reason for going off your meds, what you had thought of your self and I would also be completely honest about the theft and everything else. You cannot regain a trusting relationship with your current doctor, if it based on lies to begin with. I think that it's not going to be easy, but if your completely honest and talk it over, you may be able to recover some trust with your doc again. You may want to think over a new plan of storage for your meds and discuss what you've decided about Locking them up.
If you have a pain contract, you may want to go over your copy and think about what your going to talk about & such too.
I really hope things work out for you & I'm sorry about the struggles your family is going through too.
I'm glad to hear from you and hope to see you more
Hugs
Betty
Hi Betty!
I know it's been awhile, these last few months have been a trial and in truth I had forgotten the kindness of people until the lightbulb went off in my head and I found my way back here.
I have an appointment with my pain doc on the 10th for the sit down. When I talked to her nurse and told her what was going on, not about the son in law I didn't know about the drug stealing and he hadn't stolen my car yet or landed in jail. I told her that it was me I had been taking to much and was done. This new doc I found I could believe in and wanted to be honest with her. I could have just gone without and went through the withdrawals and reuped my meds at the proper time but for the first time I wanted to be completely honest. Her nurse Sharon said it happens life gets hard and you just do things you shouldn't, she said my doc understood and wasn't mad, she would have if I had called and asked for more meds. I can't live with the pain so I hope that she believes me, she can check the hospital records, the mental unit he was taken to even the california and oregon police if she wanted. I can't prove he stole the drugs as I didn't file a complaint but I know even if she doesn't believe me that I'm not to blame and that makes me feel a lot better I'm not the loser I thought I was. If I have to go without pain meds I'll have to learn to live with the pain and will most likely be in a chair sooner but such is life.
As for the son in law, I thank God she didn't marry him. I realize that you should and I do have compassion for the guy. But until he accepts that he is an alcoholic he will never change never be med compliant. My daughter is under the delusion that after six months sobriety her can have a few beers a week, she's never had to live with a recovering alcoholic I have and know the ropes, when to stay and when to go. He will not accept that he is bi-polar he believes it is a conspiricy against him. Until that happens he will never be med complaint either. My daughter will not let him back in the house or see the kids until this happens thank God. At least that is what she says and I hope that she is strong enough to follow through. She has a list of things that have to be accomplished by him before she will even see him. She cannot make him understand that it is like diabetes you have to manage it to be healthy. This was a nice kid I've known him since he was 17 but after the appearance of this illness he changed so much, so controlling of my daughter, so lazy, I could go on but won't. I am afraid that this man will be one of the lost ones that floats in and out of jail for the rest of his life. It's sad but it happens. I hope that she can move on and find happiness in her life and she and I can only pray that he gets help and can have a good life.
I had no idea that my meds were not safe but now I have a new hiding place that no one could ever find. I would buy a lock box but I'm afraid I would lose the key or never remember the combination :)
Thanks so much for writing back it's good to not feel so alone in the world.
Vickie
Hello again Vickie
I really hope your daughter stays strong and understands the difficulties this young man is facing.
My own sister is schizophrenic and one of my nieces is Manic Depressive, so I've grown up with mental illness and lived with more than one family member that has had to go though all the medications, mental facility stays and my sister used alcohol to self medicate before she was diagnosed and my neice unfortunately became a crack addict & other drugs before she was finally able to get on proper meds & detox too. It's a long rocky road and if this young man is stabilized on medications, then NO, your right, he will not beable to have even one beer. It's not only the achoholism, its the meds he will be taking for his mental illness.
I prayed for you & your family last night, I hope your apt with your doc goes well and I'm glad to hear you already have an apt.
I also wanted you to know that I don't think your a looser, whether you had taken your meds too quickly or not. It's very obvious that your an incredible strong woman & mother. You recognized a possible problem and you were so amazing that you went cold turkey and have been going without meds and I'm certain your in excruciating pain. Your a strong woman and I respect you for what you've done. NOT A LOOSER in my book!
It's really good to hear from you and I'm glad your back. We all need to take breaks and take care of family & life. It gets to be too much sometimes and we also need to talk about this stuff. Thank you for sharing with us.
Gentle Hugs dear heart
Betty
hi,
I have my appointment Tuesday morning and will let you know what the doc said. I don't know I may ask for the pain pump it sounds reasonable to me. That way I won't be taking drugs per se it will be regulated. I'm just about done with pain today.
Do you knowanything about adhesions after surgery. The pain from the scar tissue seems like it is around my ribs and hurts like hell. I have looked up treatment for it but there seems to be none.
I hope all goes well with you and I hope the doctor will listen to me cause I'm going to let it all out and let her know what is going on.
Thanks for your good thoughts
Vickie
Vickie
The pain pump sounds like a wonderful idea. I understand since they are putting the pain meds right on or around the spinal cord, that you end up not having to take nearly the dose that you do orally to get the same or better relief.
There is a really great ongoing discussion on pain pumps in the forum area, if your interested in viewing and or asking the gentleman that runs the discussion any questions? His name is Bob and he really does a great job explaining the pumps and everything you would ever want to know about them, plus there are alot of people who participate in that discussion too. http://forums.healthcentral.com/discussion/chronic-pain/forums/a/tpc/f/7251032/m/8491036
I don't recall if you've participated in the forum section, but just in case; your able to read all the discussions you want, but if you've not signed up for your user id & password over there too, you just have to fill out a simple registry form and most people use the same userid/PW in both spots to keep it simple, but you can do what ever you'd like. Just thought you might be interested.
Looking forward to hearing how your apt on Tuesday goes. I'll be thinking about ya. Have a Great Weekend
Betty
Hi,
I have a question that has nothing to do with pain but with his mental illness. Now I am on the spinal cord website and forums and posted about what was going on. I was amazed at the answers that were so disheartening. All of them thought that I should have him arrested for the stolen car and for stealing my pain meds, first i can't prove that he stole them and I'm sure he would just deny it and the theft of money.
As he was due in court this morning in Oregon, which he flaked on, he now has a bench warrant out for him and I'm sure when he goes to court on Wednesday in Reno he will be remanded and have to go to the town where the original probation began and do the full three years. I'm not sure that the added reports from what he did will do anything against him only hurt my daughter. She is being very tough through all this telling him be clean and sober and med compliant for a full year and that doesn't include jail time before she will see him or let him see the kids. I have watched her blossom since he has been gone, a freedom I've not seen her have for a long time she goes out with her friends, does things with the girls, and while she is sad and heartbroken for what has happened she smiles again. Can I in good conscience (sp) put more stress on her because of what he did to me? I'm very curious as you have been through this what your thoughts are on the matter.
I know if the doc doesn't believe me (and why should she, I'm sure she has heard it all before) I will survive. I won't have a great quality of life but I will survive. I've gone almost a month now without pain meds and while I can't do much I'm alive and isn't that all that counts?
I hope you can give me some insight on the non understanding of these people or am I just wrong?
Vickie
Hi Betty,
You want a big laugh? When I went to see the pain doc this morning, she had her little notes that said I was taking 30 mg of oxycontin in the morning and 20 in the afternoon, which was wrong I was to take 20 and 20 and the six to eight percocet per day. She didn't even know that I had stopped taking the pain meds blew me away.
So I spent the next 45 minutes talking to her about the boyfriend and everything he had done including stealing the pain meds. She was so understanding didn't question what had happened and yelled at me for going off the meds. She said I didn't act like an abuser had never called her early for pain meds
Since I've been off the pain meds for a month she wanted to try morphine short time release for a couple of weeks and if that helped change to extended release morphine.
So she wrote me a script for morphine and that was that.
About the pain pump she isn't an advocate of them unless you have not had good luck with oral pain meds. She has three patients with pain pumps and they don't like them. She agreed that we will revisit the issue of pain pumps in a year or so. Do I have a say in this? I hate taking oral meds and really think that since we (myself and all the doctors) agree the pain is never going away and will only get worse over time that the pain pump is a good option aghhhhhhhhhhhhhh I'm just the patient and have no say especially since she has seen thousands of patients and she knows best.
I really like this doctor but she is steadfast on this issue it's the same with the fentaynl patch, which really worked great for me she will not even discuss the patch.
Oh well, at least I am back on pain meds and that is a good thing!
Hope you had a great weekend.
Vickie
Vickie
This is surely great news. Your doctor must get her messages from the same great system that my pain doc has. lol
My Primary Care, I can send him emails and let him know how I'm doing, but over at the pain clinic, I think that the docs are so overwhelmed, there are not many of them and althought the nurses & receps are amazingly nice & understanding on the phone, for some reason the doc does not get the message's.
Maybe it worked for the best this time eh?
I'm glad your going to try the morphine or ms contin (which ever is on your bottle) I have personally had wonderful experience with this medication, I take the sustained release every 8 hours, so I don't have any inbetween end of dose pain. It's worked really well and as soon as we got the right dosage, I've not needed to change my meds in nearly 3 yrs. I also have a short acting dose to use for BT pain and it seems to cover what I'm needing most of the time.
When I first was put on the SR med, I found it to be a god send and it has bettered my life and ability to do a few things. Before I had it, I was on a pain rollercoaster and was forced to only have a two hour releif with every 6 hour dose and I was not able to do anything except lay in the recliner for about a year and that was really bad.
I really hope the new meds offer you some more comfortable relief. The meds don't make our body back to normal, but it really helps with the relief and I also like the fact that I'm not constantly having to grab another pill. The SR med makes you feel more normal and you don't have those feelings of worry about addiction like I did when I was only on short acting meds. They also allow for a more comfortable sleep too. Mornings are a bit rough and I have to take my meds and lay in the recliner for an hour or so with the heating pad, but it's not that big of a deal.
I'm really happy for you and I certainly hope that everything goes better for you. I hope things go better for your daughter too. Sounds like she may be in for a rough road and she will have some heavy choices to make.
Good to hear from you, keep in touch!
Betty