Hello All!
I havent posted in a while... I have been in hiatus from here for a while... I felt I was being very negative on here and didnt want to spread it across the forums. What has changed?... Suprisingly alot... Here is my story...
I was lucky enough to get an appointment with neurosergeon Associate Professor Andrew Danks at Monash Medical Centre, Melbourne. He is the first doctor to show me compassion. I was so screwed up from the horrific treatment at emergency departments in hospitals, I had built up this wall around me. To have a doctor that validated my pain and welcomed me with open arms was a shock. I cried in his office!! We uped the dosage of my Gabapantem to 800mgs, 3 times a day and organised with my local doctor to not deny my pain meds (endone at the time) to ensure I have an average of 4x a day, but in reality it was only for attacks and took up to 3 per attack with valium. We both knew the current pain releif schedule was a temporary measure as I have been taking endone for almost 6-7 years. He referred me to the Pain Clinic at Monash Medical Centre (Moorabin Campus). They specialise there with Palative Care and Cancer Treatments. There I was introduced to Professor Colin Goodchild. After telling him my story he almost cried himself. He held my hand and wondered why NO other doctor ever referred me to a Pain Management Team!! I wonder now myself how poorly skilled GPs are and how Emergency Departments of Hospitals are clueless to my pain. I was lucky that till my appointment with Colin, Andrew wrote an open letter to all of my local hospitals, the local ambulance department and to Centrelink (Welfare/Social Security), to ease the problems I was facing with being thrown out of Emergency Departments and called a junkie..
I am currently involved in a serious complaint with one of the local hospitals that has gone up the chain to the member of parliament that is part of his catchment, I was taken after collapsing in pain during an interview with Centrelink to have a review of my pension allocation. (after seeing first hand, they granted me on the spot then and there). They called an ambulance, I went to hospital and the nurses there threw me out onto the general waiting area screaming in pain. Other people that were also waiting were begging the triage nurse to put me in front of them. It was so kind. But once I got in they offered a panadol, even though they had my neurosergeon's letter. They ripped it up and said anyone can use word. I said page him in between my cries for help. I asked for the Emergency Department's Head Doctor to come and speak with me. I told him what the doctor did how they ripped up the letter and threw it away. He refused to give me the doctors name, refused to disclose his own and had security under each of my arms and threw me out without even a glass of water, I was dehydrated from crying for 3 hours in the General Waiting area of Emergency... Deplorable!
Anyways, back to my story...Prof. Goodchild asked me if I was happy to do a clinical trial that lasts 5 days. Its called a Ketermine Desentisization. I stay in hospital for 5 days and they have one of those pump drips and they kept pushing it higher till it was intolerable. Well having such a high toleration to pain medications, when I should have hallucinated pink marshmellow walls, instead I was doing tai-chi next to my bed from a sore bum laying in bed so much!!!
I must admit that in the 5 days I was there, I had only 2-3 attacks, which is a miracle for me. I can suffer anywhere from 2-6 a day, lasting between 5 minutes to 5 hours. They offered me endone in hospital but I really wanted to stay off them so that way I would not have to take so much for attacks at home.
After the 5 days, I came home. I started with 1-3 attacks a day, I responded with valium or 2 neurofen plus tablets. But the attacks slowly came back. Colin and I think that we should have started with a much higher dose of ketermine dripping into my veins. Colin says it was a waste of time, I say it was success, any time without pain is a good day. I mean the burning never went away, its like it never reacts to ANY medication. Thats why I love sleeping, its the only time that I am ever free of pain. I am still taking 5 Enep's at night (50mg strength each).
I saw Colin again the other day and looked at our options. As my TN was spiraling out of control again, it caused a chain reaction that I got behind university, so the two units I was doing, I have to do the assignments I missed and the exams I missed as well as my new unit, essentially I have to commit to 75 hours/week to pass, being a TN patient, we all know that such a commitment is not ever going to eventuate with the amount of attacks I have... Anyways, as he treats cancer patients we worked on a new regime. The problem I face is endone takes 20-30 minutes before it kicks in, with the attacks I have its like 5 hours waiting, too exhausting and I really want to get off endone, I have bloated so much on it, I feel like a keg ready to explode... it gave me tankels over the years and they went away a day 2 of the ketermine trial... Anyways I am going to go on a slow release oxy which has a built in laxative (cos we all know what painkillers do to ppl like us) Its called Targin and my local pharmacist says since I have a health care card, I only pay $5.60 for a box of 20. Colin has prescribed strictly one tablet every 12 hours. In between if I have strong attacks, a very fast acting pain medication that is given to cancer patients in pallative care that are dying. Its called Actiq also a PBS script so its only $5.60 a box. Its a fentynal lozenge. You put the stick to your upper cheek and suck on it. Apparently medication through the cheek is absorbed just as fast as into a vein (seems plausable... Most illegal drugs in tablet form on the market are to be disolved into the cheek area). So instead of having to have to wait in emergency departments or have to give up my gym routine, I take this lozenge with me. I suck till it works and then stop and leave it for another time. You dont suck the whole lozenge, just enough to curb the pain and still have some quality of life.
My quality of life in the last few months has been non existant. I have been in a runt and have had no idea how to get out. Colin, being trained in Pain Management could see the pain in my eyes, that I have been holding it all in and ready to implode. He referred me to a psychiatrist, again only waiting for 2-3 weeks wait only also in Monash at Moorabin. I really underestimated the healthcare in Victoria, Monash staff are amazing.. even the hospital nursing care, beats any PRIVATE hospitals I have ever visited. I was shocked and amazed. All the nurses are highly trained in TN and act very quickly in attacks of pain. I have to give a lot of merit to the Monash, their training of staff is a 5 star rating!!
Since meeting Colin Goodchild, my whole life has changed. He has been the only health professional that understood my pain and anguish and the vicious circle that this pain causes. Only HE could understand the sacrifices I have made to accomidate the pain levels, the pain also being so emotional. I have tried to seperate the emotion from the pain (using readings from the Buddhist faith) but it really is to hard. I am a person, I can feel, I can touch, and I can see... there is no way that TN pain can lack emotions... we all know how draining it is... I always try to downplay it and keep it bottled up so my son doesn't see it. Poor kid has had a hard time to process it and understand it. He is now in therapy to help him deal with my pain...
Meeting Professor Colin Goodchild has given me hope in the most darkest of days for me. He is so upbeat and promised me that he will do EVERYTHING he can to ensure I have quality in life. He will not just walk away like other doctors have because I was in the 'too hard basket'. He is the answer to my silent prayers.
So there is my story till today. I havent been able to pick up my Targin and Actiq because ironically enough I cant move from the bed. I fell asleep meditating on the beach with my ipod on Thursday! A lady woke me up after an hour, god knows how long I was really asleep for. It was 38 degrees in the sun on that day... add no sunblock to that and I havent been spending too much time in the sun. Now I have what my nurse mother describes as 2nd degree burns all along my back down to my ankles. She is applying special burn cream and sprays. She is horrified. I scream so loud just to squat on a loo, I think I wake the dead!! HA HA... The is no possibility that I can even get into a car for another few days.. I cant beleive I was that stupid... If its any consilation I DID wear a hat though...
I am merely here to tell you my story. I am not advokading anyone to take the same medication or visit the same doctors. It is my experience that I wanted to happily share with you all...
Baby steps... small goals... its the only thing that keeps me going!