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This topic contains 1 reply, has 2 voices, and was last updated by Profile photo of Noki4 Noki4 10 months, 1 week ago.

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  • #46440
    Profile photo of wendyli
    wendyli
    Participant

    I don’t know where to go from here I am lost and feeling defeated. My name is Wendy Li I am 45 years old, married and have three sons. One suffering from mental disabilities.

    I have had 32 surgeries mainly in my jaw and abdomen. I have been living with chronic pain for as long as I can remember. I injured my jaw when I was only 3 years old by falling out of our truck while my mom was driving down the highway in Huntington Beach, CA. Aside from living with chronic pain I have a Neurostimulator implant and a rare lung disease Lymphangioliomatosis (LAM)(rare form of lung cancer).

    At one point I was on 200mg, yes 200mg of Fentanyl patches but opted to have a Neurostimulator surgically implanted so I could get off the medication. It took months but I was successful.

    Unfortunately, as the LAM disease has progressed over the past 5 years I have come to depend on pain medication so that I can be an active member in my family. That is until I was BLACK LISTED from all pain clinics. Three months ago my son attempted suicide causing him to be placed on life support and unsure if he would wake up. He also experienced major seizures during this time. So I elected, as any mother would, to stay by my son’s side in the ICU.

    I therefore missed a couple of my pain management appointments causing me to run out of medication. Once my son was stable I rescheduled my appointment, took a routine drug test and received a new prescription. However, they notified me that I am being kicked out of their clinic as there were no signs of medication in my system, which common sense should tell them why. They didn’t care what I had to say or my explanation.

    I have contacted a dozen pain clinics since then and that is when I discovered I was black listed. I have been told the only way to get back in is to higher and attorney. The emergency room has also refused to treat me when I come in with a lung collapse or a cyst bursts in my lung. The fallout from all of this is the secondary effects, my blood pressure has sky rocketed, I am not able to sleep more than a few hours and I can’t go to the dentist. But most importantly I am not able to be an active member in my children’s lives so they are the ones paying the ultimate price.

    My family needs me, I need them but I feel broken, judged and defeated….

  • #47359
    Profile photo of Noki4
    Noki4
    Participant

    Wendyli,

    I am so sorry that you have had such a terrible journey. As a mother I would have done the exact same thing. Our children always come first. It is beyond frustrating that healthcare providers do not seem to agree with us.
    I do not know how to help you find a new provider but I will be your friend, a shoulder to lean on.

    I also would like to let you know about the chats here at The Pain Community. They are Monday-Wednesday-Friday at 11am ET and Thursday night at 7:30pm ET. Some really nice folks in the chats who are caring and compassionate.

    The Pain Community also has support conference calls 4 times a month. These calls are so wonderful, they are open discussion calls so everyone on the call can talk if they like. There is a host but she is also a person living with pain and understands. I know you are feeling alone right now and I want you to know you are not alone. I am here – The Pain Community (TPC) is here and there are so many others.

    The TPC Outreach Support Calls schedule for the next two calls is, july 19: 1:00-2:00 pm ET and
    July 26: 7:00-8:00 pm ET. Call in number: 712-775-7031 Passcode: 491-268-096 and press the # key.
    You can read more about the calls on the homepage.

    Take care,
    Noki4

    • This reply was modified 10 months, 1 week ago by Profile photo of Noki4 Noki4.

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