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Posted 1/29/2009 8:22 PM (GMT 0)
Hi everyone.  I'm new here and I just need to talk to someone . . . anyone.

I do not suffer from chronic pain but my husband does. He underwent back surgery back in 2003 to have his lower lumbar fused. (please excuse any misspellings)  It was a miserable failure. 

He now has a screw from the surgery that has broken through a bone and is shredding his right sciatic nerve.  He also has Tarlov cysts on his sacrum which doctors won't touch.  He is deeply depressed and deeply in pain and it just seems like we jump through so many hoops and no one wants to help us.  He is currently in pain management and they are impossible to get a hold of and have such strict guidelines that I have trouble even getting him into an emergency room when he is in tears from the pain. 

He is suffering from extreme depression and has fits of rage which scares me.  He was on cymbalta but all it seems to do is make him sweat and not be able to sleep.  He refuses to take the cymbalta now which I believe is making his depression worse but he is beside himself with the pain and can not think logically.

He is legally diasabled and stays at home while I work.  But from the pain he very rarely moves around much and has now suffered a blood clot in his leg.

Each day gets worse . . . I feel like a failure because I can't help him and the doctors want to do nothing but shove pain meds down his throat instead of fixing him. 

We've had MRI's, CTscans, milagrams, x-rays, numerous trips to the emergency room and no one will help us.  The doctor we are seeing now to possibly remove the screws from his back won't even see us until February 24th.  What am I supposed to do to help him until then?  And the doctor isn't even sure he wants to do the surgery because he wasn't the doctor who originally did the fusion.

I'm at my wits end.  My husband has threatened numerous times to kill himself.  I'm afraid to go to work and I'm afraid to come home because I might find him dead.  My boss at work is already ready to fire me because I've had to call off so much to help my husband deal with his pain.

Please let me know I'm not the only one out there who feels like this . . . please.  I cry everyday.  I feel so alone.

Thanks for reading this and I hope someone answers.

Posted 1/29/2009 9:00 PM (GMT 0)
Dear Batgoil,
The first thing I want to say to you is no, you are not alone. AND you are not a failure. Your plate is overflowing with challenging issues and I'm glad you reached out for some help, because you can't do this all yourself.

I do want to welcome you to the forum and even though you will find most of us here are chronic pain patients, I hope you will join us because you can get much support and some help, although it's important to remember we're not doctors.

From your description of your husband's problems, he must have horrible pain. And for you as his spouse to have to live with it isn't much easier. One thing - in this economy you want to preserve your job, plus it's probably (or hopefully) a way you can get away from all your husband's problelms for a part of the day. You will not be able to fix them all. Many of us have similar problems getting decent treatment for pain management, but your husband needs to do his part. Not taking his anti-depressant doesn't help.

One thing that's very important: please don't take on the responsibility for his suicide threats and, if the worst happens, it is NOT your fault. But I would strongly encourage you to call for help whenever he threatens, either through calling 911, a local crisis hotline (if you area has one), or
1-800-SUICIDE. You can use that number for help if he's threatening. But these things will only help in the crisis. It's possible your husband may need to be hospitalized for mental health issues, and even though he may not want that, it may be the only way to protect him from himself.

I think you need to get yourself some help and support in addition to this forum. I am not saying you are crazy, but the stress you're under certainly can cause depression for you, plus getting professional help will assist you with the whole situation. Are you willing to contact a therapist for yourself to talk to someone in person? Someone who has experience with chronic pain would be best. At the very minimum, talking to your own doctor to get some help for yourself is the first step. And if you have any family or friends now is the time to draw on them for support.

One thing you may want to do to protect your job is talk to your human resources person about using FMLA time. It's unpaid leave, but most workplaces are eligible but you have to apply for it. You can use it in increments - like if you have to leave early to take your husband to an appointment, or there's am emergency. If you've applied you can't be fired for using it.

There's probably a lot more but others will come along to add information. And as I think of things I'll add them. But you do need to first get some help for yourself, and use the crisis numbers whenever needed.

Keep posting!

PaLady
Posted 1/29/2009 9:46 PM (GMT 0)
Thank you, PaLady, for your reply.

I am on antidepressants, given by my family doctor, which help but most of the time I feel they aren't working due to the amount of stress I'm under.

I will definitely look into talking to someone professionally . . . hopefully I can find someone reasonably cheap considering I personally have no insurance. I've always been the kind of person who doesn't like taking their problems to someone else. I've always figured if I can't handle it on my own how is someone else going to help me . . . I've come to the conclusion that isn't possible anymore. So I'm taking baby steps here by even posting.

As for the local crisis hotline or 911. I'm terrified. I know I need to be more serious about his threats but . . . I'm just terrified. I don't know how else to explain it. My husband was in therapy before and the therapist said, "He's fine." He's fine!? I can barely get my husband to take his meds let alone try to get him to go to see another therapist. He just doesn't think logically. He's in so much pain all the time he doesn't even seem to realize anything he says or does. When the pain is bearable he cries because he sees how sad I am but then once the pain flares it's ugly head again it's same old same old again.

And unfortunately we don't have a Human Resources department. I work for a very small privately owned daycare so I don't know if FMLA would apply . . . but I will look into it definitely.

Thank you again and I do appreciate your kind words. I will keep posting. Just this small bit of exchange with you has helped more than you know.
Posted 1/29/2009 9:54 PM (GMT 0)
Dear Batgoil; I totally agree with PA's post. You need to find resources to help you to deal with this. The one thing that you need to know is that you are not alone. I am a CP patient and am married as well. Without a supportive husband to help me through the last 9 years I think I probably would have given up years ago and probably would have given in to everything that my Ins and doctors wanted instead of being aggressive towards my treatments and arrived at where I am today......a much stronger, more aware of my limitations, 45 year old woman that has Chronic Pain but is dealing with it. PA stated that you can't bear this responsibility alone and she is right. Your husband has to be a willing participant in his own care as well otherwise its not going to help. If he is flying into rages then there are some underlying problems that need to be addressed and for that a trained professional is your best bet.

Anyway I hope I have helped a bit. Welcome to the forum and keep us updated. I'll be praying for you and your husband hun.

Scarred
Posted 1/29/2009 11:34 PM (GMT 0)
Batgoil,
Baby steps work fine! Just keep taking them. You may want to talk with your doctor about options in the area for counseling that has a sliding fee scale or no charge for people without insurance. We have a couple in our community. And anti-depressants sometimes need to have their dose adjusted over time, and no, they won't fix the whole problem. But they can help you from getting too far down emotionally.

I wonder...you mention your husband goes into a rage. And you're fearful of calling 911. Are you afraid for your safety? If so please, please protect yourself. I don't care how much pain someone is in they don't have a right to hurt someone else. But pain sure can affect your thinking so I wouldn't expect him to be logical or reasonable. Have you tried calling his doctor? Maybe you mentioned it - I can't recall (my brain isn't at 100% that's for sure, so I apologize if I forget things), but if not you could really try to push his PCP for help, especially until he gets to the neurosurgeon. And I wouldn't be afraid to be assertive with the neurosurgeon that your husband needs help. I had a double lumbar fusion last year which didn't help my symptoms, but so far the hardware has stayed in place. But I can't imagine what a screw pressing against the sciatic nerve would do Has to be horrible. And if you read a lot of our threads you'll see what a challenge it is for people to get adequate pain treatment.

How about family or friends to help support you? They may not be perfect, but may be able to provide a shoulder now and then.

You may be right about FMLA if you work in a small place; I think (not sure) employers with less than 50 employees don't have to abide by it. But I'm not a lawyer. If you're not covered, maybe you could sit down with your boss and be willing to take some time unpaid on as "as needed" basis but somehow protect your job.

Keep posting. You're not alone!

PaLady
Posted 1/30/2009 12:23 AM (GMT 0)
FMLA also requires that you work a minimum of 1250 hours in the year before you use it. If you are not full time, you may not work enough hours
Posted 1/30/2009 12:40 AM (GMT 0)
B-
Maybe you can get your husband into a Day Program (aka Intensive Outpatient Program). Then he would have someplace to go while you are at work & he could get several hours a day of therapy plus once a week with the psychiatrist. As a bonus, IOP programs are far less expensive than hospital stays.

I can understand why he wouldn't want to go in-patient. They won't let you have any pain meds in the psych ward, so it is beyond miserable. Plus, anti-depressants take 4-6 weeks to work & in-patient stays almost never last that long. No matter what the plan, I think you need to plan ways to keep yourself safe. Maybe you can force him to stay somewhere else or else can get yourself into a Domestic Violence home until he gets himself together.

Also, perhaps you can schedule an emergency appointment with his pain clinic. Explain to his doctor that you need his pain enough under control to get him out of the house & off to therapy every day so his treatment plan needs to be revisited to come up with better meds or something to get the pain under control. Perhaps they can also write something for sleep. If he's not normally violent, it's possible it is being caused by sleep deprivation. I don't think it's typical for chronic pain patients with no other probs to become violent (but that's just my own experience). It could be sleep deprivation, or a mental disorder or probably dozens of other things I know nothing about, but I would think it at least warrants mentioning to his doctor.

It does get better though. I was about the same a year ago & finally got myself together. I got on better pain meds for the short term & eventually had some procedures to help lessen the pain for longer periods of time. I didn't do well on a-d meds, but was put on hormones and those helped level out my emotions. Even when the pain gets really, really awful, I no longer want to end it. It was a difficult journey & even though I've recovered my family hasn't and they say they probably never will. Maybe you will need therapy yourself for all you've been through, but I just wanted to encourage you that it is possible to beat depression & to get chronic pain symptoms under control so they don't majorly disrupt life. I will say a prayer for the both of you that everything will work out & that you each will get the help and healing that you need. I wish you all the best.

peace,
frances
Posted 1/30/2009 2:03 AM (GMT 0)
Hello Bat and welcome to Healing Well. Wow, I read your post and you sure do have alot on your plate. The others here have all given you some wonderful ideas and tips.

 

It is really sad to see what CP does to a person and their family. With you being the caregiver you catch the brunt of it all. Yes, I agree you do need to manage to hang onto your job somehow, at least by having it to go to its an escape for you for a few hours a day. My heart goes out to you. But, you hang in there and work on things that will help you. You must put your own self first here too because it will serve no purpose for you to slide down the pole so to speak, ok. Failure, forget it, you are not a failure, good grief, you have done and you are still trying to do eveything possible to get help for your husband. You are not a doctor and you can't fix him, all you can do is help get him in the direction he needs to be going.  Forget the failure business, you have failed no one. Truthfully I don't know how you have managed your situtation as well as you have because you have tried doing it all and your husband somehow has got to play a role here in getting better.

 

I don't know where you live, whether you are near a large city and would have access to a teaching hospital. Perhaps, that may be a place to start with you husband in trying to get him some kind of help. I can't see how the doctors would want to leave that screw in there as it is now. But, then I do know many drs do not like to operate on a patient that has already had surgery done by another doctor. Thats been a pretty common thing for many years. I have heard every kind of theory coming down the pike about it, but my theory is if a person needs help, they need help regardless of who did what. Thats why I am suggesting a teaching hospital as you don't have the egos to put up with in those places. Egos for some reason play a big role here.

 

Your husband like the others has said here has to take responsibility here, you cannot do this for him. I am afraid if he doesn't step up to the plate here and advocate right along beside of you, he may neve get anywhere, but putting it all off on you is not right either-he must participate. What about seeking out a different pain mgt dr, is that a possibility? All a pain mgt dr is going to do is try procedures, diagnostic blocks and medication. That is all a pain dr can do for him. None of us like taking pain meds but if that is the only way to get thru a day then thats what we have to do if we want any kind of a life. Its a known fact through out our country people with chronic pain are under treated. Its a stigma thats attached to us. Its very rare to find a dr that will actually address a persons pain and get it under control. Doctors are under educated in pain medicine and pain management for sure. They are so afraid of the DEA breathing down their necks because they write prescriptions for narcotics. Its a never ending battle and for the patient we sometimes feel like that rat lost in the maze.

 

As for FMLA, yes in most states its 50 employee rule and have worked so many hours. You can get online at the  the Dept. of Labor for your state and find out for sure. I don't know how much your employer knows of your husbands situation or how much you want them to know. But it may be a good time to sit and talk with them and let them know what is going on. Assure them that your job is your priorty as well.

 

Since the pain clinic dr is an untouchable, what about calling and talking to a nurse. Tell her just what you have told us. Does anyone there like the nurse or dr really know whats going on with your husband? Going in for an appt and saying this medicine does not work or I hurt here or there sometimes just does not cut it with a dr because they hear that all day long. I think if they had a more in depth conversation with you it may prove to be something that will get their attention. I think you would have a much better chance starting with the nurse over the dr. Its a thought and I have done this in the past. Nurses are the drs right hand so to speak and the best way to get a drs attention.

 

You keep posting here to us and we will give you a shoulder any time you need one along with a hug. We are here for anyone that needs help regardless what the problem is. Sometimes just having a sounding board can make all the difference in the world. Remember to keep yourself safe. You may think your husband is the first priority here but its both of you that need help. Your needs are every bit as important as his. Lots of hugs coming your way...Susie

 

 

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