Today for the first time in about 6 months that my TN pain became unbearable... I am coming of Targin as it makes me stay up all night and really makes me agitated. Unfortunately I didn't have any oxy's in my bag. I know I can't call an ambulance as we only have 2 paramedics covering 2 suburbs and I would have to wait 3 hours (shocking for an established suburb...) I got mum to drive me to my local emergency department. I have been there before and since having my own pain management specialist and have his letters on file, they know I am not a drug seeking junkie (which they USED to treat me with throwing a few panadols and kicking me out of the hospital!!!). Tonight they were busy, I was screaming in pain for 30 minutes in the waiting area. As I suffer terrible light sensitivity during attacks I keep eyes closed. Mum stayed with me till I was wheeled in on a wheelchair. She advised the nurse to call her after I wake up.
I was wheeled into a hallway. A doctor came up to me and asked how bad my migraine is!!!??? Can he not read??? Then he asked me why I was screaming in pain. He had NO IDEA what TN was. I was in so much pain, I just couldn't answer his pathetic questions that didn't pertain to my condition. He then asked me about my pain regime at home. Once I told him (I had to speak slow because of the shocking pain...) He started mocking me asking me what countries I visit when I am meditating... I said to him, I can't talk I am in too much pain and he started laughing and threatened me if I don't stop crying he was not going to give me pain relief. He asked me how did they treat me last time. I said I get a drip put in and they inject me with determine and morphine cocktail. He again laughed in a mocking way and said this was not a junkie needle room and he is not going to treat me!!!!!!!!!!! I said to page my pain management doctor (Prof. Colin Goodchild from Monash Medical Centre, in case there are people from Melbourne and need a wonderful and understanding doctor)... The doctor again laughed in a mocking way and said that he didn't have time to read the copies of letters from other Professional Specialists that are helping me with the shocking hit or miss pain management cocktail... By then I had been crying in extreme pain for over two hours with no pain relief and he just walked away half way through me speaking!!! A nurse came back with a needle with NO PAIN RELEIF and only a muscle relaxant!!! I said to her are you sure this is for me... she said yes and I asked her why no one is putting in an IV drip to give me pain relief. She gave me two panadols and as I was slowing them (I had stronger codeine tablets in my bad but I didn't want to mix when I was expecting opiates through a drip). The doctor forced my eyes open, and told me to get out and go home. By then I was in hysterical pain and I couldn't talk or walk... Still in the wheelchair he pushed me out into the exit hallway and said go call yourself a taxi!!!!!!! I asked him why he refuses to treat me, he told me he has no time for junkies!!!! I asked him again to read the file and letter my pain management doctor wrote on how to treat me if I was in terrible pain and couldn't manage it myself.... He said please leave, he didn't even put breaks on the wheelchair, he pushed me out and walked away and i was still rolling down towards the exit door. Noone helped me out of the chair. A lovely Turkish lady helped me up and picked up the letters from specialists that he doctor in emergency returned by dropping it in my lap whilst wheeling me out... This lovely lady got my mobile out of my bag for me and dialled my home number and assisted me out of the chair (I still was crying in pain and couldn't open eyes...) It took a total stranger to show compassion and she was there with her teen that was very pale... I had to organise my own transport STILL in so much pain crying, by then I was so exhausted mum came and got me and forced me (she is a nurse) to take a cocktail of the Targin I was trying to get off (oxycodone) and pushed 4 panadeine fortes and 2 neurofen pluses...
Its now 4.30am, still crying in pain. Its days like this where I think about ending my life. I know I will never do it, but some health professionals just make me feel like I should just give up the fight to have a partially normal life and I just want to die. Its so hard when you have chronic pain, especially something as rare as TN. Its not like I am going in with a broken bone. There are no physical visual prompts for them to see. When I get mistreated (and this is now the 7th time since properly diagnosed that I have been mistreated)... I just feel so empty and alone. I have a wonderful family that is trained in my pain management, even my teen son knows what to do during attacks... Tonight when I came back home I crushed and snorted the Targin and it took 2 hours before I could feel ANYTHING... My pain is so chronic that 3 x Endones and 2x Valiums is like baby panadol to me. I have 5-6 attacks a day ranging from 5 minutes to a few hours.... But I see them stressed out and angry when I have been mistreated and the house becomes tense and everyone is on edge. Tonight I was made feel less than a human being... All I have thought about in the last 3 hours of crying is how painless would it be if I just overdosed on sleeping pills... I am scared of the outside world thanks to people who just mock me, judge me and think I am a junkie... I have become a hermit in my own home, scared of going out and living my life, in case I get an attack I can't control and need the hospital to step in... I shelter myself scared... I suffer chronic depression thanks to this disorder, it has eaten away all my confidence and self worth... I have never openly talked about this on here. I can't even date, my last relationship ended as my bf was weak and couldn't watch me in pain and handle me crying out and screaming... I can't remember the last time I looked at myself in the mirror and smiled... I can't remember the last time I laughed and was relaxed.... Living in constant fear of painful attacks and living half a life nowadays is just taking its toll on me... I have had to walk away from an awsum position of power in corporate banking... I have gone from having my own office, ordering staff around, meeting clients to spending 3/4 of a day in PJs hair like a birds nest, dark withdrawn, glassy eyes... I can't remember the last time I wore a skirt and high heels... I can't remember the last time I had an alcoholic drink and not been in fear of attacks and not being able to take opiates till alcohol wears off... I am 37 but I feel like I am 73... How can I be positive and happy? I am meant to be a positive role model for my son... I can see it in his eyes how much pain he is in watching me being mistreated... he holds back his emotions and lays down with me and holds my hand till I fall asleep... Its now almost 5 am and he hasn't slept at all because I am still crying in pain... he won't leave my side...
I probably sound like a whinging pathetic self centred brat. I know there are people out there that they are worse than me. My mother constantly reminds me that I am lucky, I could have ended up never walking again from my accident (the causing factor that led to the diagnoses of my TN)... I thank God daily for how lucky I am, that I have a healthy family, I do not have a deadly disease, that I can see and smell the flowers in my garden... I really am grateful for the small things in life... but when you get kicked down by a health professional, someone you pour your heart to so they can understand and empathise... A doctor that has a duty of care to do everything in their power to treat me ethically and assist me to better health.... It just really makes me feel so flat that I just don't want to live... Right now my pain is so strong, on my face, and in my heart... I knew if I didn't write this that I would go even more backwards into my shell... I am definitely going to take this further, I know when I see my Pain Management Specialist, he is going to go get extremely angry and AGAIN write to my local hospital about my pain. He says that Emergency Department doctors are extremely limited, they are used to cycle of drunken idiots, broken bones, heart attacks... blah blah... they never take the time to step outside their own square and actually look at the patient as a person... They are very naive.
I am going to write to the health minister about all my experiences and the way I have been either mistreated, or judged as a junkie... I think that we have evolved enough as a race to be able to have some sort of compassion... I feel that there must so many people out there, that haven't been diagnosed and are also been mistreated.... RSPCA has a guideline on how to treat animals ethically... where is the ethics in a suburban hospital, with all the information under their noses from my specialists!!! I will post a copy of the letter and any replies that I receive.
Anyone that has bothered to read this, I am sorry... I just knew if I didn't vent I would get more worked up and causing the pain to accelerate... I suppose thank you for the invention of blogs... this is the only way I can vent and not put more pressure on my family... They already tip-toe around me just for me to have some sort of pain-free existence...
God. Please make the pain go away just long enough for me to be able to sleep... the only thing in my life that makes me happy is sleep... its the only time I can be pain free and i am lucky enough to be able to dream... It is my only escape from reality....