Newsletter from Linden, AUGUST 2013 Hello from Brisbane, August has been a busy month for me and Bri as I am sure it has been for each one of you and your families, so as a precursor, this newsletter may best be read thru when you have some timeJ Please feel free to pass on this newsletter to anyone who you think may be interested in following my progress. Apologies for the lack of comms from or to us, as this month we have gone thru 3 different phone providers! As we have no internet, we rely on the small data pack of our phones to provide us internet, so we have had blank weeks this month with no mobile phones or internet! (as we don’t have a home phone) We switched from our original provider (that we have used several years) because since Bri relocated us to Brisbane in April, after my accident in Jan, we were only receiving a signal when our phones were basically out the back in the common courtyard of our little apartment, so we would miss calls and txt etc when we weren’t leaving our phones out there! We switched to a provider which was using part of Telstra’s network, which worked brilliantly then a week after we switched to them fell over, when Telstra didn’t renew a contract with a 3G satellite company or something. We had 7 days to weigh up the options of which company to go with that would give decent coverage and service for a reasonable price before we lost our numbers. In the end we have tried another new company that the previous provider has recommended we try, so fingers crossed we hope we don’t have to change providers again anytime soon. So been VERY frustrating for Bri sorting all this out. Our numbers are all still the same, but if you have tried to call last month or txt and we haven’t replied, then that is our explanation. This month I saw a very good and well known Orthopaedic Knee Specialist. You may be wondering why being a Big Burns patient? Previous I have mentioned that my biggest and most frustrating issues following the burn is that My knees and elbows are severely restricted in range of movement causing me SEVERE pain and discomfort – more than the burn/s. After a big burn, one trauma response of the body is to turn tissue cells around join/s – particularly hips, elbows, shoulders, knees, into calcium or bone! For me I unfortunately have this Heterotopic Ossification (HO) in both elbows and both knees. So basically I have new bone where there should be soft tissue. Once the doctors are sure that the body trauma response has slowed and stopped – usually 12-18mths minimum, Orthopaedic Surgeons can then dig out and grind away the calcium or bone that has formed in the wrong place. Then with more hard work and painful physio, hopefully more range can be gained and less pain suffered from the joint/s affected. Currently I am “only” 8 mths down the track since my burn, so I wasn’t expecting any great new news, but just wanted to have all my ducks lined up and start getting into the system so we would be all good to go early next year. The first thing the Surgeon said was “congratulations on being here and alive!” I thought “that was a strange thing for an Ortho Knee Surgeon to say”, but then turned out that earlier in his career he had spent a lot of time as a burns doctor and working in the RBH Hospital where I had been flown to. So he was acutely aware of the odds and the typical journey that someone in my situation has been on so far. Just another reminder to me of how blessed and fortunate I am to be alive, thanks to all of your Prayers on my behalf and God seeing fit that I am still here, I believe. Anyway he looked at my knees and said “ %^$ there are some *^&((^)(y big lumps in those knees!” No kidding I thought! I haven’t been making up this painJ But he was really good and reckons the effort I have been putting in and the good work of the physios so far has been very good, so he is confident that he can improve things down the track. So in Jan/Feb I will have some bone scans taken to ascertain the HO activity, hopefully it has stopped laying down bone, so I can go into an operation as soon as possible after that! If they operate before the activity of HO has stopped it can come back and come back more aggressive, so everyone has to be very confident that it has stopped doing its thing first, so a HUGE lesson in patience and coping with pain for a while longer! A fellow burns patient, who also is a famous TV Chef is still waiting nearly 2yrs since his burn, to have his elbows operated on because his HO is still active. I can talk about him because he is on TV and regularly has articles of his progress in Woman’s magazines – hint, look closely at his elbows in the pics, mine look like his. He is a top bloke and has pulled thru a tremendous physical and emotional battle so far. He is a better man than I. September I see a very good and reputable Elbow Orthopaedic Specialist for the same HO issue with my elbows, which are stuck at basically 90 degrees now, which is awkward, but functionally they are the “best” position to be stuck in if there was a choice! Words can’t describe the discomfort and PAIN it took for me and my physio to get them to that position early on this year, but I am grateful for her efforts now! I see patients now in the same situation I was 7 mths ago and am grateful for the progress I have made so far but so very sympathetic to what they are struggling with presently, so have been given the opportunity to encourage them on their own journey. My Occupational Therapist (OT) said the other day, “I can say the same thing 100 times and it doesn’t make a difference, but you and (another fellow patient - a young burns guy in a chopper prang in Jan) speak to X and he responds positively straight away! It made X’s day to meet you guys and talk with you both” It’s good to help other burns patient’s along on their own tough and uncertain journeys. We all have a lot in common and understand things that others – even the medical staff don’t know or have experienced. I know I will be given a similar plan as the knees, from the elbow surgeon but again, it is a case of getting in early on their program so no delays when the HO is under control according to bone density and CT scans. Bri has been keeping busy and saving money with the following projects – Reupholstering an old 2 seater couch that we bought second-hand. Her next big project amongst looking after me and keeping our little household running is to make her own wedding dress, for the “fancy dress wedding” as it has been called since our simple Registry Wedding last month that we squeezed in around my rehab as an Outpatient. She has also modified some of my long sleeve shirts that I can no longer wear as I can’t get the sleeves around my 90 degree bent and swollen elbows. Bri has cut the sleeves down to short sleeves and modified the top buttons with clever Velcro because I can’t reach the buttons above my upper chest. But to look at, the shirts look 100% normal! She is a clever girl! We have had one of Bri’s good friends from Perth come over for a week and stay with us. So that has been nice to see Eloise – a familiar face from WA and to hear all the news from over there. She and Bri had a good time together walking around Brisbane City, South Bank, and going on a free ferry ride up the river. Bri showed her some good shopping spots and she found some good sales to stock up as much cheaper and better shopping in Brisbane compared with Perth the girls tell me. It was sad when it came to say goodbye, she was almost convinced to move here! This month I have had another Burns Review with the medical team of Skin/Burns Surgeons, Physio’s and Occupational Therapists, as I do every 4-6 weeks. I actually had this time as my doctor the surgeon who did several of my operations and skin grafts, he is a very well known Professor in burns etc. This was the first time he had seen me in 7mths or so, and was happy with “his work” on me and the progress with my skin and rehab in general for the stage that I am at on this journey. So was good to meet again under much better circumstances for us both than the last times in ICU and Acute burns ward. One of my goals in physio is to learn to run/jogging again. So we have been working up to that with improved walking – 2miles a day and balance exercises and strengthening etc. I reached that goal this month and am now jogging 1 mile a day, amongst all my other gym work, exercises and stretches. Still slow progress, but considering I couldn’t stand up on my own in March or lift a pillow, it is good to look back and see where progress has been made. Bri was in with me one of my physio sessions and the physio mentioned that vacuuming would be good exercise for me………..Bri was quick to pick up on that and seeing that I am more balanced and stronger now has put me to good work every Friday vacuuming our carpets! But in all seriousness it is good to keep finding things I can do to help and makes me feel not so useless and a burden, with my stuck elbows and stiff knees. We have continued to try and make it along to church as often as we can again. I can never remember being away from church as long as I have been so far this year, so has been good to head back again. It has been hard though to be regular, just because by the weekends we are just so worn out and fatigued. But I am slowly getting more strength and endurance. Everyone has been so kind and supportive and it is humbling and overwhelming to meet people for the first time who come up and say that they have/are or will keep praying for me! This has been by far the biggest reason for my continual positive recovery so far. Last week I did my postal vote for our Federal Election here in Australia on 7th Sept. I look forward to a better next 3 yrs as compared with the previous disappointing government of the last 6yrs. So by the time you read this we will all know who our next government and leaders will be. One of my goals with my Occupational Therapy is to get driving again. But due to my significant current injuries/disabilities with my elbows and knees not working properly, my OT has recommended an OT Driving assessment test for insurance and legal purposes, because of new laws in Australia after a person was not able to control his car well and killed a 2 year old child. (crazy – according to Centrelink I am not disabled – so no financial assistance from government while I am not able to work, but then another government department says I have a permanent disability so can’t drive unless I pass a $500.00 driving test!) So have been put on a 10 mth waiting list for that, which is ok, because hopefully by then I will have had my elbows and knees operated on and should be even more mobile and functional anyway. Otherwise it is a $500.00 test if I don’t wait and do it privately! So for that money I reckon we can afford to wait! In the meantime I am walking and catching buses to hospital/home everyday during the week, as the patient transfer service has now expired for me. Many of you may have seen the Story of Turia Pitt recently on Channel 9’s 60mins program recently, which many people have been talking about this month. She was suffered 70% burns to her young body in late 2011 up in the Kimberlies of Western Australia I recall. I remember seeing her story in early 2012 and being profoundly impacted not knowing I would be on a somewhat similar journey 6mths or so later! I even prayed for her and Michael for several months after seeing the first story about her on 60mins. So was good to see her progress as she and her heroic partner Michael keep journeying together! Their life has been shattered and changed forever, but they keep moving forward TOGETHER showing us what real Love looks like and means despite the injustices of this life. It reminded me that our husband/wife/partners are the REAL hero’s in our recovery journey. Not everyone is so blessed and fortunate in the case of the TV Chef I mentioned earlier who lost his wife and 3 children in their house fire day after Christmas 2011. Anyway both good stories to look up online sometime if you have the chance. I have been trialling a product of skin lotion to moisturise my skin with – as I have to everyday after my shower. The product is Macadamia Naturals – Professional Lotion manufactured down the road locally by Macadamia Oils of Australia. They are trying to break into the health care industry with their product so a relative of Bri’s who works in the Macadamia farming industry supplied some to me to trial and after trialling all the other recommended natural lotions and moisturisers by my therapists, me and Bri both agree that we like this General Purpose Moisturiser best. The company asked me to write about my experience and a testimony on the product, which I have done, so one of the testimonials on the Macadamia Oils website is my experience. It is working well for me and is economical - $24.00 for 1 Litre, as we go thru a 1 Litre every month, so that had to come into it for us at least. So we have been blessed to have found and been supplied with a very good high quality moisturiser. Anyway we have been very happy with the Lotion as a moisturiser and nice to support a local company as well, so if you are looking for a good natural moisturiser have a look online – macadamiaoils This month myself and Bri enjoyed a one night “Honeymoon” since our Registry Wedding in July. Some good friends from church asked if we had had a Honeymoon, after hearing of our wedding, but we said we didn’t have money, time and weren’t up for it etc They thought that this was just not a good thing, so they booked and paid for a nice room in a lovely city hotel for Me and Bri on a Saturday night this month. It was so nice go somewhere different from the hospital or home even though it was in the same city. We enjoyed our little “honeymoon” and are so appreciative of the thoughtfulness, kindness and generosity of good people! Thank-you! I will finish on one last good story of how we are being blessed – Since coming out of Garu the Rehab facility in May, I have been fortunate to have had a patient transfer service transport me to my Outpatient rehab session back at the RBH Hospital where I had all my initial surgeries. During the time travelling the drivers and I would chat to pass the time. Garry on one Monday asked if I had seen a Rugby game on the weekend. I said no……….he asked why not!? I said we don’t have a TV cause money tight and figured a TV was not a necessity etc. He couldn’t believe it! Shocked he said, I have TV that I’m not using for at least 6mths so he would bring it round that weekend if we wanted. I was overwhelmed by this generous offer and didn’t know how I could accept, but he was genuine and wanted us to experience some entertainment and know what was going on outside of hospital etc. So that Sunday he carries in his TV and sets it up for me and Bri! Again we thank God for taking care of us and for each one of you who allowed God to work thru you, knowingly or unknowingly, has made a difference to help make this difficult journey that me and Bri are on just a little bit easier and helping to make my recovery a continually positive one. Thank-you for all of your continual thoughts, prayers, generous donations and support. I wouldn’t be here without all of your support! We thank God everyday for all of you, our wonderful family and friends who support us so faithfully! We ask that He will Bless each of you in your own lives and in your families lives, as He has done us. Regards, Linden and Bri
Posted on: Fri, 06 Sep 2013 12:25:13 +0000
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