Sunday, February 24, 2013

I Almost Lost It

Hey folks, this will be a personal one tonight. Please understand it might sound emotional and not completely organized. I went to the ER this weekend and am still very sore and tired.


This weekend was pretty scary. I have been in mounting pain for about two months now, and I reached a breaking point this weekend where I could not even walk. I have been trying to get into a pain management clinic, but I am in an area where no one really seems to recognize the serious pain that endometriosis causes. I am in a smaller town and, unlike Portland (where I was constantly referred to pain clinics), no one here seems to understand why I am even calling them. I have been bounced from doctor to doctor, with some not even examining me before passing me on. Rather than dealing with my pain, I was forced to shove it in a box and pretend it was not so bad. And then that box exploded.

And something really bad happened. In meandering manner, I need to get this across. Because this is serious and needs to change. Because in the weeks I spent searching for a doctor to actually help me, I was driven into a corner. I was in so much pain that I literally did not care if I dropped down dead. I lost my will to keep fighting. I was not sad or depressed. My physical pain simply overwhelmed me so completely that I wished that I was dead. An otherwise completely happy and content, bright, and loved 24 year old, was wishing that. I was wishing that my disease would do me the courtesy of just killing me. And the reality that my doctors were okay with letting that sort of mindset happen, terrified me.

I made the level-headed decision--I got help when I knew I was out of my depth. But I also had the money and insurance (and support) to do so. How many people do not have that? What if I had listened to my first doctor and believed that I was not going to get the help I needed? I believe that I am strong, but a never ending battle can really weaken you at times; especially without the medical care and support you need. I was fortunate. My pain was managed when I got to the ER. When the pain settled, I felt terrible for thinking what I had. And I was balling, confessing what I had felt and was asking my significant other for forgiveness for ever thinking such a terrible thing. With my pain subdued, I could hardly believe I felt that way. But I did. And it was a completely unnecessary complication induced by unconcerned doctors.

The doctor I saw in the ER was disgusted when I told her how difficult getting treated had been. I told her everything, including what had lead up to me coming in that night. She gave me enough medicine to get me through at least a week and said to come back if I needed to. Not only that, but she was willing to give me both the stronger stuff for horrible days and the milder/safer stuff that I usually prefer to take. Many doctors do not trust me when I tell them that I want both because I try to minimize how much I take the stronger medications. They treat me like a drug addict looking for a larger haul. I am so relieved and thankful that this doctor was concerned enough to try and help me. I said goodbye to her in tears, and I expressed overwhelming gratitude for having a doctor who actually cared.

The point I'm trying to make is this: I've read stories where women with endometriosis have taken their lives and/or tried to take their lives, because they could no longer handle the physical pain. Chronic pain patients are, by an large, more willing to attempt or commit suicide. And yet many doctors continue to tell patients to 'tough it out'? I had one doctor tell me to just learn to live with my 'woman troubles'. The lack of interest or compassion for the pain I felt was beyond discouraging. And I could not believe the lack of recognition for the intolerable hell this disease can bring on a person.

I am not advocating an un-involved distribution of pain medications. Far from it. I try to avoid narcotics as much as humanly possible. They can be addicting, damage your liver, and cause all sorts of side-effects. But if a patient loses the will to live, stops taking care of themselves or their needs, or commits suicide because s/he can no longer tolerate her or his suffering, you have a problem much worse than drug addiction.

I'm seeing an acupuncturist as soon as possible and am continuing to take my natural pain supplements (i.e., bromelain, curcumin). I try to avoid the heavy stuff as much as possible. But when you are in enough pain to wish you were dead, you have to take care of that pain first and then regroup. I'm regrouping tomorrow and will continue to pursue healthy/safe pain management.

I'm sorry if this post sounds gargled and unprofessional. Like I said--not feeling so well. But I hope the message is clear--doctors need to recognize the kind of pain this disease causes and be more proactive about helping their patients manage it. No one should have to suffer like this.




Note: In case this needs to be made clear--I did not, at any point this weekend, consider taking my life. What happened still scared me; I honestly lost my will to live for a short time. I take something like that very seriously and am ashamed I felt that way. But I would prefer that how I felt be shared and acknowledged, rather than hidden. Because I am sure many of my readers have been in enough pain to lose sight of what's possible. Thank you very much for your support and empathy. Please do not worry over me. I took care of myself and am good (relatively speaking) now.

6 comments:

  1. What are the med.s that you left with? What is the strong and the mild? I am desperate for some help. The only thing that has ever made it completely go away was being in the hospital and having a combination of morphine and torridal. Please share, maybe those would help. I am trying to deal with the pain using distraction and prayer and meditation and when the pain is not as desperate as it is now, exercise.

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    1. I am sorry you are suffering so very much. Dilauded is my strong stuff (which still doesn't get rid of everything), and torodal and tramadol with occasional percocet is mild. However, I have recently been to a pain clinic, and can tell you what my current regimen is: Butrand (opiod patches that are worn constantly), percocet, tramadol, cymbalta, mobic, and folic acid. These are taken with caution, as mixing drugs can be dangerous. Also, please continue to exercise daily. The endorphins do wonders for the pain. Good luck, feel free to message if you need any help, and check with your doctor about a pain clinic.

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  2. I'm so glad you wrote this. As a 20 year old type 1 diabetic, I've had similar experiences repeatedly with health care "professionals" and am so tired of fighting. Sometimes I do think of just giving up and that scares the hell out of me, because otherwise I'm normally happy and healthy.

    But I've had pharmacists run out my medication, telling me to wait over a week for it (I need insulin daily to survive)and then been yelled at by the ER people when asking for emergency medication. I've had doctors refusing to let me on a course to help improve my glucose control because "others deserve it more" (very unprofessional, and others have /insisted/ I go on it) which now means that I can't apply for a pump (medical equipment that would help my control no end and I desperately want). But importantly for me recently is that I feel completely abandoned by doctors. My control is terrible right now making me feel terrible, not to mention terrified of the long term complications this could lead to, and even though I'm trying everything, everyday is a struggle and they literally just ignore my pleas for help. It's not right. Whatsmore because I've been feeling so bad, my friends are now getting mad because I don't spend enough time with them, when I'm in my room feeling too sick to be with them. Have you had this? Where people can't see your illness and see you put on a brave face, so assume there is NEVER anything wrong. Sorry to rant on your blog, it was really good, I just wanted to say I can relate, and I'm so glad I'm not the only one! Are you British?

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    1. I totally understand the rant, I sometimes want to scream these sorts of things out loud, whether I'm at home or in a crowded market. It becomes overwhelming and bottled up.

      And yes, I have lost friends because of my illness. They assume that I've stopped making plans with them because I do not care about them (which is understandable) but really it's because I never know when I'll be able to keep commitments. I get really anxious over planning things now because I am either letting people down by not being able to follow through or letting people down because I'm not as peppy as I used to be. But you know what? That's okay. If they are not sick, they cannot understand. I do not hold it against them. I simply keep the friends who do, stay in loose contact with the ones who don't, and try to move forward with friends who can/will understand. It's a process.

      I am actually American, I am from Portland, Oregon :).

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    2. That's such a brilliant attitude! I totally get the not being as preppy as you used to be, so feeling like you're letting other people down. It's great you're finding a way forward although it's always a struggle. Lots of luck with the future. And please, keep writing! I didn't know what Endometriosis was until I read your blog, but it was very enlightening. I wish you all the luck in the world to get yourself listened to, and get the help you need.

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  3. Once again, I really enjoyed reading this older post and I appreciate you being so candid with your feelings. I can tell that the pain can be an overwhelming struggle at times. I don't know you in person, but you will be in my thoughts as I meditate tonight.

    Cheers,

    Benjamin

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Contact me at bedhead@bedriddenhead.com

About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health and happiness.