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Coping with medical problems


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Gee I hope this makes sense...

I have lupus, chiari (My skull is malformed and my brain is herniated through my neck putting pressure on my spinal canal), a heart condition called pulmonary hypertension and degenerative disc disease that has cause pain my legs. It wasn't until about 5 years ago that they actually found most of this. It was a relief after being told so many times that the symptoms were psychological, to actually have diagnoses to go along with them. I've gone through so many medical tests and procedures without complaining... with actually pretending those procedures and tests didn't hurt or I wasn't afraid because I have no one to complain to. I'm in my 30's and live with my parents because I've had these problems my whole life. I am so tired. If you've seen earlier posts you know I've been protecting my family my whole life from things I thought would hurt them. From avoiding anything that would remind them of the abuse I suffered, to now not even letting them know the level of pain and fatigue I am in. I suffer pain rather than taking pain medication so they won't know how bad it is... well to be honest I also do it because I'm afraid of becoming addicted to pain medication. My doctor assured me that when you are in the kind of pain I am in it is not "addiction" but a necessary medication. Still not sure I believe that rationalization.

I've never heard of mental health support groups or therapy for medical conditions but I need something to change. What I'm doing isn't working for me. I'm so tired and I need help not only with that but someone to talk to just to get help in making some of those medical decisions that are so frightening for my parents to listen to and my doctors are too afraid of being sued to tell me what they would do. Is there anything out there like this?

Thank you

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Hi Skyblue, welcome to the forum :-)

It sounds like your life is not easy Skyblue. I've lived chronic and debilitating pain from a blown lumbar disk, and I know how difficult it can be to deal with pain that does not go away. I commend your courage in protecting your family and not wanting to get addicted to pain medication. I do wonder if that is your best recourse though? Perhaps fighting the pain without medication will exhaust you too much - just speculating of course, you are the only one who can truly decide that. I hated taking medication too, so I know what you mean, but science has come a long way in providing relief for those who suffer and perhaps it's OK to avail ourselves of that relief.

We are not doctors here and can't provide much advice on that front, but we are here to hear you, support and encourage you when you need it.... Hope you have a good day today Skyblue :D

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If I may ask, is there a reason you feel that your family would have difficulty with knowing the level of pain you are in? Have they had a difficult time in dealing with this in the past, separate from dealing with abuse indecent?? Is it more of just a general feeling of going through figuring things out all these years??

I finally received a diagnosis of fibromyalgia a couple years ago after struggles with chronic muscle and nerve pain and struggles with kidney function. I know how infuriating it was to be steered toward antidepressants and treated as though my mental state was creating the pain that was constantly ruled out my multiple tests. I literally begged Drs to figure out what was wrong...only to have them treat me as if I was crazy. I can't count how many times I left the doctors in tears because my hopes were up, and then dashed again. And, Yes, finally getting that diagnosis is HUGE!!

I don't assume to know much about your situation but in the posts I have read I have seen a little bit of a theme...I wonder if there is a part of you that is trying to maintain a sense of some control, etc...and feel like you are lessening things on your family by, in a sense, "martyring" yourself. I apologize if that sounds harsh, but hear me out. By this, I mean...perhaps you feel like it's worth it to be in more pain/discomfort because it is 'sparing' your family the discomfort of dealing with your situation. It has sounded in the posts I read like you feel like you/your disability are a burden...Could this mindset be a way of dealing with those feelings, doing something about it?

In the past I have found myself doing this kind of behavior---> I found that I felt much better about myself & the family I was 'protecting' by putting myself last, when i retook my power and become an advocate for myself. It can sneak up on that you resent giving that power away...and often I think they don't even realize that this is what is going on with you.

I would be curious if this rings any bells with you...If so, You might find it really empowering to be willing to step and advocate for yourself and through that, not downplaying the issues, take the weight off your family. Also, for the things you can't do, if you are calling the shots, that might actually feel good that you are working on a 'plan', specific steps that they can follow, instead of not knowing how to help.

I hope that this isn't offensive to you, just trying to be straightforward with ya ;).

In your area, do you have access to any kind of a home health aide or visiting nurse? Also, any pain clinics in the area??

And as scary ad the pain meds are, if docs has advised that they are more of a maintenance kind of med...Why are you putting yourself through this pain silently just to save your family?? Believe me, people who have lived with someone in constant pain KNOW. They can tell, no matter how well you think you are hiding it. Perhaps the family would feel better knowing that you have options to take and control pain instead of seeing it in your eyes and not thinking they (or you) can do anything about it. I would consider at least trying it.

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Thank you both for your replies.

Dahli, Wow I think you've been peaking inside my life. As I read what you wrote I heard my mother telling me what a burden I've been and all the things she be free from at this time in her life, but my illnesses have robbed her of that. Don't get me wrong, my parents are very loving people, but things like this get said in anger and I guess even though she's apologized and said she was angry and didn't mean it, I know it is true. That is why I don't want any more on them then they already have. You said a lot of things I will have to chew on. Thank you very much.

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