I’ve made a decision. The other day I got a phone call from a place I’d never heard of before that had received a referral for me to continue my balance and strength rehab with them. This new place is very local, and does indeed have the equipment for balance exercises. So I cancelled an appointment with my GP to fill out forms for the Strength for Life and instead went for the initial interview for the new place. It was a ‘good’ interview but as I left there was something in the back of my mind that was troubling me. It’s taken a few days to come to the surface and it’s done so in typical Gaelyne fashion. I’ve found myself ranting about stuff with people I know understand me. Not ranting verbally, but in writing, which makes sense because that’s how I tend to work through things that bug me.
I’ve just rescheduled the appointment with the GP to fill out the permission forms for the Strength for Life program at Noarlunga. I’ve decided to keep my options open and only make any further decisions about any program after being able to compare the choices available in person. The current choices are continue driving to the Repat Rehab gym twice a week, The local place (ECH) which is local to me, Strength for Life at Noarlunga Leisure Centre, or a membership with a gym such as Anytime Fitness.
So what is it that was bothering me about my interview the other day? Well. ECH is for people who are basically about 15yrs older than me. The girl doing the interview kept trying to play detective to “figure out” why I have issues that most people don’t deal with until they’re over 65. At the time I was too polite, and too surprised by the questions to put words to it, but since then it’s been mulling in my brain and found voice in my private rants with friends. The answer to the question boils down to having had breast cancer when I was 40. My cancer thrived on estrogen, so I had to take Tamoxifen for 5yrs to keep estrogen at bay from my system so any residual cancer cells wouldnt be able to take hold. This in turn caused early menopause and my bones and joints responded to the lack of estrogen by pushing me into early osteoporosis and worsening osteoarthritis. So there we have it – premature ageing.
For a very long time I’ve been feeling frustrated and angry about this whole premature ageing thing but I realised today that it’s a bonus. Yes that’s right, a bonus. If I hadn’t had the tamoxifen and had plenty of that youth elixir estrogen in my system, I’d probably be dead. Given that alternative, coping with all the stuff I do seems like a worthwhile trade off. Better yet, I can still do something about the ravages of age by continuing on this path of rehabilitating myself, strengthening my bones and muscles, learning better balance techniques and improving my well being.
Next week I have a one to one session with the girl at ECH to learn how to use the equipment and so she can evaluate what my exercises will be. I’ll keep the appointment and probably attend at least one session so I can meet the person who will actually be running the sessions and of course the other people going through their paces. The girl I see initially isn’t someone I’ll be dealing with regularly so I will withhold judgement on whether their programs are acceptable or not until I see what a session is really like. I’ll do the same with the Strength for Life program, and see if I can get a tour for the Anytime Fitness gym before making a final decision.
Hey there! Happy Boxing Day! We had a nice Christmas. I gave Rod a Samsung Galaxy Tablet – a 7inch job. He’s still finding his way around with it but so far seems happy with it. He gave me a gorgeous jewelry box that looks like it belongs in a D&D setting. I’ve never had a full sized jewelry box before and honestly, this is the first one I’ve ever seen that really suits the person that is me. Santa also snuck a speaker tower into the house and put it by the tree after we went to bed. This uses bluetooth so I can just start music on my phone and away it goes. The speaker is so much better than what I had in mind to go with my phone for music. It has a built in radio, can charge my phone, and as it’s bluetooth I can connect the computer, iPad, Rod’s computer, or his tablet to it so it’s very versatile. It was a big surprise, but a really nice one!
But I’m not really here to talk about Christmas. As many of you who know me on Facebook are aware, I quite enjoy a few different Bingo games and Solitaire Blitz. Although to be honest, I haven’t been too happy with Solitaire Blitz since they changed the format over about a month ago. I still play it though as nothing better that’s similar has come along.
The other day I noticed something I had never seen before and thought I’d mention it in case others might be interested too.
When you go to select your boosters, have you ever noticed the little triangles on the bottom of the screen? I thought they were decorations, but then one was lit up so I clicked on it and discovered I had a bunch of free Jokers to use that I didn’t know existed. Here’s what the triangles and the second page (if there is one) looks like:
If you’re a Solitaire Blitz, Bingo or Bejeweled player on Facebook, feel free to add me – the more the merrier. Leave a note though so I know who you are and what you play. Otherwise I might not realise why you’ve requested the add.
I know I don’t normally write about Facebook games, but it crossed my mind and I thought I’d share. Cheers until next time!
Thursday was my birthday and I had a busy day out with Rod so thought I’d share what we did and how I celebrated 51 years on this earth. We had to be in Nth Adelaide by 10:45am but we got lost because Melbourne St kept eluding us. It’s a main thoroughfare yet we missed a turn and ended up going in circles. We left home late and without coffee so combine that with being lost, having only my phone for a GPS and it was cloudy so it kept recalculating. I can’t read maps well either. So after we blew up at each other I made Rod pull over and look at the map. We got closer but were still lost. I finally found the right place on the map that matched where we actually were and somehow we finally got where we were going.
My appointment was with the eye specialist for a special test requiring a machine he only has in his N. Adelaide office. Early on when I realised we were going to be late, I rang to let them know. As it turns out they were also running late so that at least worked out. There was nowhere to park and usually I just pop out and ring Rod to come get me when I’m done but he didn’t have his phone as he’d sent it in for repairs earlier this week. So I left him my phone and hoped I’d be able to use the phone in the doctor’s office when I was done. That panned out fine and I also aced my tests (field of vision and glaucoma).
So with that drama over we found our way to the Central Market in the city and made a beeline for the International Food Court for a beer and a feed. Love the cheap lunches there. All you can pile on a plate for $6.50. It’s not the healthiest of foods, but it is yummy.
Once we were topped up with food we moved on to our next plan. I had a full shopping list of really miscellaneous items to pick up and one elusive item we searched for last month there and didn’t find. Sometime ago I found and picked up a bottle of what I thought was hot mustard sauce. Well it’s mustard tasting (but not deep yellow) and when you use a drop or two on a spring roll or dim sims you get a lovely bit of ‘pain’ and instant sinus clearing – and then it goes away… so of course I have to do it again and again as I really love the heat, the temporary pain and oh yeah, having my sinuses feel clear every once in a while. The bottle I’d had in my cupboard had languished unopened for over a year because the label was in Chinese and I forgot what it was. When I finally opened it one day I was thrilled to find it was something I remembered from Chinese restaurants in the states. I put it in a dropper bottle, knowing it’s potency. Within a few months we used the whole bottle up and silly me, I hadn’t taken a photo of it so didn’t know what to ask for at the Asian groceries. I knew it came from one of the Asian groceries and there’s only a handful I’ve visited. So my plan was to visit one or two of the other places we hadn’t been to last month to see if I could find it. Within minutes of walking into the first of the only two possible places it could be, I recognised the bottle. This store had an English label on it in tiny writing so I finally know what magical elixir I’m using. Mustard Seed Oil. Oil. Ahh. Not a sauce. Mystery solved. I bought 4 bottles and the lady who rang up our order kept asking me if I was sure I knew how hot the stuff was. Imagine her surprise when I told her we’d already finished one bottle of it and that’s why we’d come back for more. She either thought we were brave or stupid. Maybe both. This is definitely something used by the DROP, though. So maybe she’d only tried it in a larger quantity. (Yikes what a thought).
While browsing in that shop I was really surprised to run into something I’d chatted online with a friend here in Australia about – she’d asked me once to explain dark and light Karo syrup. I found both. I didn’t look at the price but imagine it wasn’t cheap. It wouldn’t be something I’d use. But at least if anyone ever asks me, I know where to find it.
We then did a trip around ALL of the aisles of the Central Market, stopping at a few stalls for various bits and pieces. I found some cheese I’d never tried before and bought a small amount of it. I thought it was rather expensive but when I got home and looked at the photo I’d taken of the name of it, I saw the price – um. $59.95 a kilo. Lucky I only bought 140g – about $8 worth. The cheese is imported Dutch Reypenaer VSOP and has been matured 2 years. There must have been a big import of it as I noticed it in a few of the bigger cheese stalls. I LOVE the cheese stalls at the market. If it weren’t for Rod being a bit impatient at shopping I could definitely spend a lot of time (and no doubt money) on various wonderful cheeses. The variety at the market is amazing.
The rest of my food list was pretty typical for us – mushrooms, onions, capsicum (red & green peppers), and anything else that looked good. Once I’d found all the produce I wanted we went to our usual favourite Asian grocery in the Market – Kims – and Rod stocked up on a few kilos of frozen raw prawns (we buy a few bags each year and it tends to last us several months). I went on the look out for some new noodle bowls. I had two from the same store that I bought a few years ago and used every day. Rod broke one and a few weeks ago I broke the other one, so I wanted a few replacements. Sadly they didn’t have the same pattern, but had one in the same style. I took that and a medium and small bowl in another pretty pattern. All of the bowls are smaller than what I’d had, but that’s OK and a kind of gift to myself as well. I do want to reach my next birthday at a lighter weight. Smaller portions, smaller bowls.
Leaving Kim’s, we passed a small stand with clothing and other goods imported from Indonesia. Last year I picked up a beautiful skirt from there for only $5. This time I found a lovely large zippered bag in pink with sparkly stars in the material for $5. It’s big enough and padded enough that I can stash my iPad in it for going out and it has a really nice lining in it too. Bargain!
Lemon Balm seeds. OMG, I have hope. I have SEEDS to plant in the dirt in my back yard. Where I’ve never planted anything before because I could never be sure there was any permanency in our being here. This. This is MOMENTOUS to me. I’ve been keeping my eye out for lemon balm since I moved here 15 years ago. It’s hard to find at nurseries in seedling format and I haven’t ever run into the seeds. I once found some dried lemon balm at a shop in the Market but that’s been long ago used up. We were on our way out of the market and passed by a shop that I think is where I found the dried lemon balm last time. They had a wire rack with seeds in packets and as I walked by it, I thought I saw the word ‘balm’. I walked a few steps further and when my brain caught up with what I’d seen I had to turn around and go back. It was indeed what I thought it was and you better believe I bought a packet. A packet of hope, encouragement, and faith. Oh yes, I feel that strongly about these little seeds. Not only is it hope and encouragement to go forward and dig in the dirt and plant something I hope will be there for a long time to come – with me enjoying it as well, but also this plant and me have an affinity with each other. It was growing at my home in Saginaw and I always loved the smell when I crushed the leaves. I dried some one year and the day I stripped the leaves to put them in jars for making tea with it, I had a bad cold with a stuffy nose. It took most of an afternoon to harvest the leaves (it was a good crop), and when I finished for the day a miracle had happened. Breathing in the lemon balm while stripping the leaves cleared my nose and the cold was gone. I also found that the tea helped with headaches and it never failed to help with sinus and cold issues. We all know my health is on the shaky side (heh, no pun intended there), but to find seeds for this plant… I don’t know, it just gives me hope for a better year health wise too.
So that was our big adventure in the city on my birthday. It was a fun day and I found some nice things aside from getting lost and oh yeah, forgetting to have coffee for the whole day (gasp!) it was quietly special. And I found hope. That’s a pretty big find in a little packet of seeds.
Eleven years ago today I had a mastectomy. Up until that time the only reason I ever needed to see a doctor was for the occasional infection after a cold. These days, I have to book a double appointment because I have multiple issues. Having breast cancer changed my life significantly in many ways. The hardest being the changes in my body as a result of the treatments, and coping with the loss of dear friends to the same cancer, facing the reality of my own mortality.
Many good things have happened because I had breast cancer though. I’ve made amazing friends I would probably have never met otherwise. I have developed more tolerance towards the little annoyances in life. I appreciate each and every year I have on this earth, and have a different perspective than I did eleven years ago. I still struggle with the things my body does and doesn’t do since that diagnosis. Some days I struggle more than others, and sometimes probably I could deal with better than I actually do.
A few years after the mastectomy, and had reconstruction. I no longer needed to wear a prosthetic breast, and no longer had to worry about the fake one falling out of my clothes – and yes that actually happened. The worst part was at the end of the day, changing for bed. Some days I’d totally forget about cancer and that I no longer had a right breast. It was a particularly rude reminder when the prosthetic would fall out onto my feet. Since reconstruction that doesn’t happen, and as time passed the new breast no longer seems new – it’s just another part of me. Even the scars have faded. I wish that the rest of my body could have had a similar event that just makes all the annoying issues I’ve had to cope with go away or fade into the background.
So today I raise a glass and ponder that after 11 years I’m still here. Not in the best of condition, but damn, I’ve made it to a milestone in some ways I never thought I’d see.
I wrote the above this morning while I had my cup of coffee and hadn’t yet started my day. As is often the case, I sometimes fall back to sleep and today was no different, aside from one exception. I had an extraordinary dream that started with a music video showing an ordinary road which slowly changed over time and by the end of the song it was as if the viewer was in a different world or country. Buildings and landmarks were all very differently shaped and coloured. My dream switched to me walking the road back from the unusual to where I’d started, looking for where the dividing line might be such as a road sign about entering a new place or a flag or something. In my dream, it was a flag. There were flags along the entire route every mile or so, up on the utility poles. Where the change took place the flag was different. Again my dream changed and I was at ‘home’ where I grew up in Shields, Mi. I was talking to my step father Bill about the place I’d just been in the dream and telling him how interesting my day had been. In reality, Bill died years ago and I doubt I’d ever had such an interesting coversation with him, but the feeling of having an interesting day and seeing so many strange and unusual things stayed with me when I woke up. I’ve always hated the word ‘journey’ in association with breast cancer, but it’s a bit hard after writing the above and the dream I had no to realise that it has been and will probably continue to be a long strange trip. In the dream, the music was something by Queensryche but the visuals were right out of a Yes album cover. I love my mind at times. It can put the most interesting mashes of things together.
Again, a toast to 11 years. May the next 11 have less health issues and more fascinating roads that lead to truly interesting places.
Smile and keep going
try to ignore the quake.
It’s not fear it’s a new reality.
New reason to find a new strength,
A new challenge, just to keep going.
The more I move and push beyond
The more strength I find.
Must keep going.
Must put another step forward
And another until they add up
Until the day is done.
I’ve developed what’s known as Essential Tremor (ET) for short. It’s not an old age thing. Young people can have it too. It’s also not necessarily a serious disease unless it interferes with normal every day life. It used to be known as Benign Essential Tremor but the benign word was removed as it can be disabling. People who have this have involuntary tremors in their hands, neck, head and other areas. In my case my hands shake, my knees can shake, and most frustrating for me as it’s hardest to hide, my head either nods yes or shakes no depending on whatever gets the tremor started in the first place.
What started out as a mild bit of my knees and hands shaking first thing in the morning, generally just after a good stretch while still in bed has been progressing. A few weeks ago it was just a few minutes in the morning when I was barely awake and would just go away. Then I started having problems with my electronic cigarette button, mostly at night when I’d had a long day. It requires holding the button down while taking a drag but the button kept being intermittent. I became so frustrated with it, I was seriously considering sending it back to the vendor for replacement. Then I gave it to Rod to use for a day to see if he had any issues with it. He didn’t have any problems at all. This particular Ecig goes into menu mode on the second button press and that’s what it was doing every time I had problems with it. The actual cause of course was the barely noticeable tremor in my finger on the button. I had a similar problem with my new Android tablet. I’d go to click on a link and end up clicking the link above or below the intended one. I was convinced I had a dud tablet but no, it was a problem with my finger trembling at just the wrong moment without my even realising it.
Over the course of a few weeks the morning shakes became much more pronounced and lasted longer each day. Then my head started doing its own thing with either bopping up and down or shaking side to side. It was just a small thing at first but now it is very noticeable to me. It started one morning along with the other shakes and this has now become a regular occurrence. In the last few days the severity has increased so I’ve felt like a walking vibrating machine. Worse, it wouldn’t settle down until late afternoon.
I had an appointment with my GP, that when I made the appointment, I made it for late afternoon so the tremors wouldn’t be too bad, but reality had different plans. My head was nodding continuously and I felt very self conscious in the waiting room. I kept thinking I should find my headphones and just tuck the end into my pocket. That way people might think I was just enjoying some music instead of sitting there looking like I was a lunatic.
My GP and I have a good relationship and we had a long conversation about what’s happening and what can be done to make it easier to cope with these changes. When I’d seen the rheumatologist a few weeks ago it was still ‘early days’ and while we talked about medication, it wasn’t an appropriate choice when it was only a mild shaking of my hands. But this has progressed beyond that stage and is having a very real affect on my daily life, so trying medication to reduce the severity now made sense. Amazing how much can change in a matter of a few weeks.
We decided to start with the most commonly used med for Essential Tremor, a beta blocker named Propranolol at the lowest dose for a month and see how I go with it. This medication has some down sides though. I need to be extra careful to monitor my glucose levels as it can cause lows. It can be a problem for people with asthma and the main reason my rheumatologist thought it might not be that great for me – it can cause fatigue, which I already have issues with. However shaking and head nodding continuously is also quite exhausting so it could be a trade off.
My dosage is one pill twice a day at the lowest possible dose (10mg) and I started taking it Monday night. Tuesday morning I still had the usual shaking, but it was much less intense than it had been. The tremors have been much easier to cope with and so far I haven’t noticed any extra fatigue. I really didn’t want to be taking yet another medication but I’m glad I gave it a try. Unfortunately this means I’ll have to take meds for this for the rest of my life, but I’m just pleased that there’s relief that works. Hopefully I’ll be able to stay on the lowest dose for as long as possible.
I turned 50 a few weeks ago and was like a little kid looking forward to it – it’s a big milestone and I really wanted to do something to make it memorable. My 40th was memorable, but for all the wrong reasons – I was recovering from a mastectomy and had chemo and radiation therapy on the near horizon. I wasn’t even sure I’d make it to see my 50th.
I kicked around a few ideas of things to do such as swim with the dolphins or go up in a hot air balloon. Then in August we reached a court agreement that would let us own our home. As we’ll be paying a mortgage I mentally set aside thoughts on doing something big for my birthday and was quite happy to be content that we’d soon be owning our own home. That’s a pretty huge thing for us. So a couple weeks before my birthday I told Rod I wanted to have a lunch with friends to celebrate, and we thought doing it on the weekend before would make sense. While having lunch with ‘The Lunch Group’ (we get together once a month and have lunch at a pub), I brought the subject up. Calendars were checked and we were all set for the Sunday before. Later in the same week while chatting with Dave, he told us not to make any plans for after lunch as he and Pat were treating us to brownies and ice cream at the Aldinga airfield. Aside from thinking ‘Yum’ as the brownies there are really nice, I didn’t give it much thought. They know I like brownies and David’s main interest besides web development is anything to do with airplanes (seriously – check out his website at 5dme.net) and that’s how they discovered the incredible brownies at the airfield museum. We’ve gone there before just for brownies and coffee.
Unbeknownst to me, Rod, Dave & Pat had quietly organised a flight in a light Cessna for me. If you visited Dave’s website, you’ll know he does a lot of airplane photography. So when he pulled out his camera and had a chat with one of the pilots I didn’t think much of it. It’s pretty normal behaviour for him. He talked me into coming out on the tarmac and having a look at the plane, got us all to pose by it and then suggested I have a seat in the passenger side for piccies. Oh sure why not (by this time I was fairly sure what was up but wasn’t completely sure). Once the pilot hopped in and suggested we take a trip down to the Murray mouth, the jig was up. So away we went on an hour long joy flight. We flew down to Victor Harbor then over to Hindmarsh Island and the mouth of the Murray, which is where the Murray River meets the sea. It was an absolutely perfect day for it. Sunny, comfortably warm and we had great views. The funny thing is – my best friend lives on Hindmarsh Island near the Murray Mouth and she was up at Aldinga enjoying brownies with our friends while we were flying by her house!
It was a real surprise and the first I’ve ever been in a light aircraft. It was great fun! Here are some photos of our adventures. Rod was able to ride along too in the back seat so some of the pics are from his camera. He took some videos as well. I sure don’t think I’ll forget this birthday!
This video includes a view of the Murray Mouth (where the Murray River meets the sea) in South Australia, the locks where the fresh water and sea water are separated, the bridge between Goolwa and Hindmarsh Island, Goolwa and a bit at the end that shows me trying to take pics with my phone.
This video includes a view of South Australia’s Fleurieu Peninsula as we came in to land at the Aldinga airfield. The pilot and I have a laugh after we land.
Tuesday I saw this exercise physiology guy as part of my diabetes care plan. I think I get ilke four visits with him. I had no idea what to expect but knew he did exercise (obviously), physio, and also nuitrition. So we’ve decided to work on flexibility first for me and then move on to weight loss. His big goal of course is to assist with making my diabetes better by lowering my (already pretty good) glucose levels and getting more movement back into my life. He’s big on interval training which is where you do something at a regular slow, easy pace and then kick ass for 30 seconds, and repeat several times. He wants me to use my elliptical bike for this since it pretty much gets all of my body a work out rather than just one aspect. The elliptical bike has two bars that move back and forth so the arms get a work out too. Going flat out on it for 30 seconds seemed like a reasonable thing. Funny how 30 seconds can seem like forever though! He also gave me some quite different (to me) stretching exercises and one of them is already a favourite with me as it really helped with the lyphoedema in my right side in back. That area gets really stiff and full of fluid and then is difficult and painful. The stretching exercise really really helped that a lot.
So I plan to do the stretching exercises twice a day – he didn’t tell me to do that, but it seems like it makes sense to me. In the morning to un-stiff myself and in the evening after tea for the same reason. I’ll be doing the intervals in the mornings after doing the stretching exercises. My reasoning is that even though it’s awful to do, Once done and recovered I feel like a million bucks and have better concentration. No point in having that at night after tea when I really actually need that in the morning / afternoon. So that’s the plan at the moment. I see him again in a month.
This morning I have an appointment with the gastroenterolist and get the results of my iron blood test I had last week. I know it’s back to sub-normal so I think he may suggest another iron transfusion and possibly having them on a regular basis. We’ll see what happens.