Im a melbourne girl who is using this blog to vent about my life. As well as being a Uni student studying education with a double major of PE and health, Im a chronic pain sufferer, who spends more time in a doctors office than anyone should have to. I also have a keen interest in anatomy and physiology, probably because of all that has happened to me.
Thursday, June 17, 2010
what would you like to know?
please comment any questions and I'll create a blog answering them. I think this would be quite fun.
Thanks your time and effort is hugely appreciated :)
xx Jen
Wednesday, June 9, 2010
The pain of painkillers
Disclaimer: ** Please take note that all medications should be taken seriously and under the advice your doctor. These views are my own and based on my personal experiences. The medications I am speaking about are addictive and should never be abused or taken without your doctor’s consent. **
At some stage in our lives, we’ve all taken a couple of panadol, maybe even some panadine (panadol + codeine), to get us over that cold, or headache. Some of us have even taken much stronger pain medications that have been prescribed by our doctor. I’m planning on discussing not only how painkillers work, but how our bodies, mine in particular react to the medications and when we deprive our body of these ‘ingredients’ we use frequently and long term, when taken by people, when they live with chronic pain.
When we take pain medication, it doesn’t have an effect on the part of the body that is hurting; it takes effect on our brain. To be precise it takes effect in ‘three specialized regions of the brain: the physical sensation region that identifies and localizes the pain (somatosensory cortex), the emotional feeling region that experiences suffering (limbic system), and the thinking region that assigns meaning to the pain (frontal cortex)’. Source
To simplify this, any type of analgesics (painkillers), don’t effect the area that’s injured, they simply block the pain signals going to the brain, or interfere with they way the brain interoperates these signals. This in turn affects the body’s nervous system so that pain messages are scrambled.
There are two types of painkillers: Non-narcotics and Narcotics. I'm mostly on the latter unfortunately. I won’t go into the difference between the two, too much because I want to share my story. If you’re interested in the types of painkillers, you can find infomation here.
As I’ve just mentioned I'm mostly on the narcotic variety of painkillers. Narcotics can involve much more than the generalised assumption of opiates like heroin or morphine etc but it also includes codeine which in lower doses is available over the counter at your pharmacy and even your body’s natural narcotic; endorphins.
Over the past 11 months, my body has endured an increased amount of narcotic medicine including oxycontin, oxycodine, and also morphine and pethidine while hospitalised but also during this latest experience, it’s been the highest dosages of this forms of painkillers I’ve ever been on. While my pain medication expands much beyond these, in the form of various types of muscle relaxants and anti-depressants, it’s reducing the oxycontin that has the most effect on me. Oxycontin is similar to morphine, but it’s a slow release medication, that has a 12 hour controlled release of its ingredients to give you greater control over your pain long term.
Over the past 8-9 weeks I have started my journey into reducing my body’s dependence on this drug. As pleased as I am to say “I feel that I no longer need the same amount of this medication anymore”, I know my body is addicted to it. This addiction means that to reduce the side effects of coming off this medication, I have to take it slowly and carefully, so that I don’t make myself ill and cause serious harm to my body. Because of the type of pain and injury I have, this is the 4th time I have started the withdrawal process of coming of my pain medication, and I hope it’s to be the 4th time, I will do so, successfully. At this moment (8th June 2010) I'm 1/3 of the way on this journey of reducing my pain medications, so I can once more become effective and efficient in my daily life. (Although I know many people function quite normally on these types of medications, I still find it quite foreign, and don’t like the way it takes control over my body).
The first two times I have done this process quite quickly and with little side effects as I was not on the oxycontin for any longer than 4 months. During my 3rd experience with this drug, I was taking it for a period of 10 months before I started “coming down” and I can honestly say I really felt the side effects of reducing the meds too quickly. I’ve experienced vomiting, diarrhoea, nausea, cramping, headaches, hot and cold sweats, and loss of appetite to name a few. This was 2 years ago. I remember while going through this, that I said I was never going to take oxycontin again, if I was to be in a similar condition. Well here I am again. Having reduced my intake by a 1/3 now, very slowly some other side effects are starting to show as I continue to reduce my body’s dependence on the drug. I'm already starting to experience:
- Nausea
- Cramping
- Diarrhoea
- Headaches
- Fatigue
- Night sweats
…and this is just so far. Coming off oxycontin and its withdrawal is often compared to a person going through a ‘heroin withdrawal’ in terms of its intensity. The only we have some control over this experience is to take the time to reduce the medication slowly, in small amounts and over a long period of time. Sometimes I think it would be easier to come of the medication easier and much quicker by reducing it every 3-5 days as opposed to every 1-3 weeks and just get the withdrawal pains over and done with instead of drawing it out, but I have to remind myself to do it the healthy way that wont harm my body, or stress it out too much! I hate to think what it has done to my overall health in both my brain and my organs!!!
I hope I’ve explained this so it translates that we have to be aware of what we take to manage our pain, but most of all like food – make us aware of what we are putting in our body’s and its affects afterwards.
Thanks for reading, I appreciate it and any other input, or expiriences is welcome so feel free to comment!
- Jen xx
**note: when I write my blogs, I write the way I would speak most of the time, and I apologize if things don’t quite make sense or don’t come out clear. I have a tendency to write at night, and this is when I'm most medicated.
Monday, January 25, 2010
9 days and counting...
So I'm currently on the operation countdown. Or is it countdown operation? Anyway this is one operation I am not apprehensive about. I hope my surgeon does a good cleanout of my hip joint, has a thorough look around inside and out of the joint, while also checking out the trachanter (the boney bit that juts out of your leg bone). As mentioned in another one of my blog updates, this operation sort of sets the precedent for a hip replacement, and my pain treatment afterwards. The latest X-rays etc have shown arthritic deterioration of the bone, and although I shouldn’t hope for it, I do wish that there is enough deterioration for a hip replacement. You see, I don’t wish to go through this pain one more time before having a replacement. The hip replacement is the final end of the road, and I’d like to see the light at the end of the tunnel if I can jam in as many idioms into this sentence. Because this is the trigger for my pain, I don’t understand why we can’t remove the source of this trigger, and in return I have less pain. It seems like simply logic to me, however everyone who suffers from pain knows life is not that simple and logic sometimes doesn’t apply.
Anyway on the 3rd of Feb, I’ll be going under the knife once more. I'm due in at the hospital at 6.45am which I guess means I'm first or second on the list for the day. I'm looking forward to my “last meal” as I’ve been calling it (my mother told me off for saying so) but I’ve chosen to eat at Meccah Bah in at docklands where they have one of the best Turkish roast lamb pizza’s I’ve ever eaten, and for entrĂ©e we’ll have mussels with the chickpea dipping sauce. I don’t know how they do it, but it’s the only way I will eat mussels! Yum!
Anyway I'm looking forward to updating soon.
Take care,
Jen xx
Saturday, January 16, 2010
Life, Goals and Expectancies.
A friend of mine recently made a comment in her latest blog post about her previous goals and achievements and how her life has changed, now that those goals are now not achievable. I was thinking about this the night before she had posted. What were my goals prior to my accident and where is my life going now?
To begin with; I’ve always had a passion for sport and exercise and probably from around the time I was 15 or 16, I began to have an interest in health too. In year 10 we had a seemingly silly PE elective that was mandatory and didn’t have a good reputation from previous years. However this PE subject which was mostly about fitness with two physical classes each week, and this is when I decided I’d change my life around. During the course of this subject I went from an overweight teenager, who although enjoyed netball and many other team sports, was not technically“fit”, to a student who was enthusiastic about fitness and health, with a teacher who not only encouraged me personally but helped me gain control over my body again. From this I went onto achieve many things including a couple of Great Victorian Bike Rides!
So I guess you could say I knew exactly what I wanted to be since year 10, and that goal hasn’t changed since.
Throughout VCE I undertook in a subject called Outdoor education and environmental studies. I thoughourly enjoyed not only the physical aspects of this subject such as camping, hiking, rock climbing, surfing etc, but also learning about the environment such as the different ecosystems around us, and what we can do to help them. After VCE, I enrolled in a university course of this nature, Outdoor education at La Trobe University. I deferred this course for a year for many reasons, one of which was my dad had been diagnosed with cancer again (for the 4th or 5th time), and I wasn’t ready to leave home. Throughout the year I had off my goals did not change. I even volunteered back at my old high school to help out with the outdoor ed program throughout the year. When it came time to ensure my place back in University, I found that they had begun a new course that was a double major of both Phys ed and Outdoor ed under an education degree. Absolutely perfect! I thought I’d struck gold and become the luckiest person alive when I was accepted. Particularly when I had to apply as a mature age student and only had one of nine places to fill for the non-year 12’s!
I had a pretty successful first semester and in second semester of my first year I had my accident. I continued for another year and a half taking withheld grades for the subjects I couldn’t complete because of the physical demands, and I continued to believe I was going to get better. By the time I had reached my 3rd year of a 4 year course, my health in regard to my hip was going downhill fast. I took a year off, and after some deep thought decided to enrol in a double major of phys ed and HEALTH. It was very similar to my previous course, it was at the same campus, and best yet I could carry my completed PE subjects into the new course, making me have an almost complete PE major before I had even started a new 4 year course.
(2006 Alps trip, La Trobe Uni, Bendigo)Once again, I had an even more successful first semester of uni, gaining high distinctions in 3 out of 4 subjects and missing out on the 4th HD by only a few marks. By second semester, things had begun to unravel once again. The same story of which you have been previously reading about in earlier blog posts once again consumed my life and pushed out my studies. Now the New Year has begun, and once again I’m awaiting my now 4th hip surgery. My expectancy of my goal of becoming a PE/health teacher is declining.
I’m a good student. My grades have shown that. I’m passionate about my subjects and what they are about. However….
I wonder how much more my body can take. I wonder how much more I can emotionally take and most recently what will my future hold? Will I be able to complete my university studies? Will I be able to spend the 8am to 5pm maybe even until 7pm days surrounded by students? Can I handle that? Emotionally and physically? I promised myself I’d never be a teacher who stood on the sidelines. I always planned to be actively involved because I think the ones that do make the best teachers.
I’ve spent the better part of just over three years on heavy prescription pain meds, and I’m unsure for how much longer I will be on them. I have a decent amount of nerve damage in my left leg which means that I can only achieve 2/3rd’s of the strength the other leg can have, in other words, I’ve lost of 30% of my strength output. I’m now on anti-depressants (much to my despair) because I had reached a point where I can no longer emotionally deal with my physical pain.
I may have only been talking about one goal here, but it is a major part of my life right now and I’ve been thinking a lot about it. A lot of effort and time has gone into this goal, and many achievements have been made. It’s not only my time and effort, but those of my high school teachers, my lecturers, and my family and friends for getting me to this point.
I feel I have achieved so much, but yet I’m so far away from where I want to be. I had planned to study oversea's during first semester of my 3rd year. Will I ever get there? I am about to take more time off from my uni studies to recover from surgery and to come off the medication. Whats next for me? Am I destined to do what i've wanted to do for the last 7 years of my life?
It's hard enough worrying about having enough money to pay rent and the bills, in a home i hardly live in, let alone what does the future hold?
Take care and much love,
Jen xx
PS: post allows annoyomous commentsWednesday, January 6, 2010
friend envy
Wow two blog posts in one night. No, I hope to make this short and sweet. A friend of mine, who I’ve commented on before, was the one who influenced me to start a blog of my own. As she continues her Journey through chronic pain, she continues to write in a way which I’m amazed at. I wish I was able to say the things she does in her own blog, as often I feel almost exactly the same way.
Last night she posted a heartfelt entry, in which I would like to take a few words of what she said, so I can express a similar feeling. I'd most of all like to speak about envy and jealousy.
I often wonder if my friends (who I care deeply about) know the full extent of what I’m going through. Chronic pain in any shape is more debilitating than just the physical effects. It affects me emotionally and mentally as well. Quite a while ago in this recent series of my life, I hit an emotional wall very early in the sequence of events in which I was more than ready to give up. I simply couldn’t fight anymore. The more pain I was in, the more I cried. I couldn’t take the constant battle of life, the simplest of tasks such as showering and going to the toilet was so incredibly difficult. The fact is I’m ALWAYS in pain. I take around 20 pain killers a day. My head is a maze of cotton wool. My life now resolves around a small portion yet critical part of my body. The hip is such a detailed, complicated structure compared to a knee or ankle, not that those body parts can’t cause the same amount of pain. However when surgery is involved, there are many more muscles to cut through before you can get to the structure that is a ball and socket.
Many of you know that I have a hip problem but to be more specific I suffer from chronic pain which has come from the length of time that this injury has affected my body. I suffer from nerve damage which has meant I have lost a third of the strength that my leg could expel, and finally I have a constant mechanical problem of the hip joint which is what has lead me into this journey. I hope that this explanation helps you understand a bit clearer why I am this way. Chronic pain is a lonely experience that has become my personal battle. Because of this I want to not be forgotten, and a far memory, because you are all in my heart, everyday.
This friend I talked about earlier perfectly penned a post weeks ago about ‘friend envy’. This is exactly what I have. I loved to see the pictures of parties and clubs you had gone to, I loved to hear about what happened and who said what to whom. However I miss that I could not join you. I hate that my life evolves around my health and hip problem, but I love that you ask how I am. I hate that all I have to really talk about is my hip, and I’m sure you’re sick of it too. I thank you for continuing to invite me to events, although I generally have to decline, I thank you for visiting me when I’m in hospital, but hate that I’m home alone.
Although I did not intend for that to sound like the poem out of ‘10 things I hate about you’ it’s all true. I admit that I’m jealous that you can live a fairly carefree life, complete your goals and further your life and yet don’t have to worry about the consequences apart from maybe the hangover you might suffer. I don’t know if you have other consequences from this joy you get out of life, however one day I’d like to join you, and hope that you accept that although I am envious, I would like to be free from what’s holding me back. But I am proud of your achievements and happy you reach your goals, but I miss that I don’t get to share those times with you. I love catching up with you, because I thank you that you care enough to make the effort, especially when I can’t return the favour.
Although I took more words from Hayley’s post than I meant to, it’s because it’s true. You can read Hayley’s post about friend envy Here . We lead very similar yet extremely different lives. I hope I haven’t spoken too harshly, or made you feel things you shouldn’t; I just wanted to express my feelings in the only way I know how. I hope the words came out clear, as this haze in my head never disapears.
I thank you once more for reading this and you comments are most appreciated (you don’t need an account to post a comment).
Love and all that matters,
Jen Xxo
December: point form.
I apologise for putting off blogging for so long. I’m not quite sure why, because I don’t fill my days like a normal 23 year old would during uni holidays due to my hell of a life. I use this place not only to vent but to almost document what happens in my life.
I have a massive tendency to blah on a bit and I’m hoping to compress December into a not too massive read for you.
- Pain got worse. Saw my surgeon; he’s decided to operate after three months of declaring there was nothing more he could do. He examined my hip for much longer than he normally would and I believe he must of felt something unusual, to have such a change of mind. However I am happy for this outcome because WE ALL knew I have a mechanical problem in the joint so now he can fix it! I’m not over-optimistic that this will take my pain away, however I know for certain it will reduce the high levels of the unliveable pain I have been going through. Surgery date: 3rd Feb.
- I have been in and out of my GP’s office for reasons other than needing medication. My thyroid tests have comeback abnormal. This is a first for me, and it also explains why I have put on almost 5kg since the end of October when I’ve been sleeping most of the time, and have a good-decent diet. I had the levels retested within a month of finding out that I had a new problem, and I found that not only were my THS levels up, so were my T3 and T4. Unfortunately due to the medical marvel that I am, when one (T3 or T4) is up, the other goes down. Mine are both up? Regardless, I cannot afford to put on weight. However I cannot move to exercise particularly cardio! Although the problem is my hip, it’s not only affecting the left leg, but also the buttock and my back. It hurts to even sit on the loo!
Also thanks to my current lifestyle of the last 4-5 months of either being on the couch or in bed, my lungs have gathered a fair amount of gunk on them and in the past month its been quite hard to breath and I’m out of breath quite quickly and have been very wheezy. In the last week I’ve had a chest X-ray to rule out pneumonia and also a spirometry test. The spirometry test, I did today and boy is breathing hard! I felt like I had maxed out at the gym, my body was so tired!
- Christmas was lovely as usual. Every Christmas day, the whole of my father’s side of the family has Christmas dinner at my Aunty and Uncles place in Geelong. They live in a lovely big old property, and it always brings back fond memories. This year, my cousin Suzy had gotten a kitten, so I spent most of the day playing with this adorable black and white ball called Jenkins.
Christmas day was the first day I had gone without a nap in months. I slept for 22 hours the following day.
- I visited and met my brand new cousin (my cousin’s baby) in the few days between Christmas and New Year’s Eve. Chloe is gorgeous and growing stronger and bigger each time I see pictures of her.

We (mum and I) stayed with family friends in Myrtleford for 3 days, and as well of receiving the love of Billy, their 9 month old border collie… whos still all arms and legs! He's such a loving dog.
And we travelled out to Milawa, to see the cheese factory (oh how I heart cheese) and Brown Brothers winery. Unfortunately we only got to the winery, but it was lovely especially since I’m not a fan of red or white wine, I got to try a few sparkling wines, and with the help of a twitter friend, settled on a lovely fruity bottle of Zibbibio. I finally came back home and spent new years nanna style as I was simply too tired from the car trip.I hope that this wasn’t too much of a bullet point document of my December for you. My next post which I will also write tonight may be much better.
Peace and love you guys,
Jen xx
Monday, November 30, 2009
A complete turn around... and around
In the last month i have returned from hospital and done a near complete 180 degree turnaround. I arrived home from hospital on crutches, and although i didn't leave the house pretty much for two weeks, i was walking around without the use of an aid quite soon after. I felt ALMOST invincible. I had gone from being 10/10 pain all the time to 4/10 pain most of the day. After so many months in pain i could not even begin to describe, this turn around was unbelievable. Knowing the consequences of 'too much too soon' i was quite wary of what i did, so i have stayed pretty quite this whole month. I have mostly stayed indoors, in bed and watching DVD's and my body has been quite content.
Very quickly 4 weeks has passed, and an outing with a friend for lunch (very simple... at a very nice restaurant) has sent me back into the world of spasm's, pain and the all too familiar. Except this time, there's something different. I now call them flares, as i have a good day or days and a bad day or week.
That lunch not quite two weeks ago sent me to a weekend of agony followed closely by 2 days of ''its all good''. Before i knew it, my body despised me again, hating me in all kinds of ways from groin pain to 'hip flexer' pain, buttock muscle pain, muscle aches and knee and ankle pain all in the left leg. I knew my body hated me, but after so many 'good days', I felt like we'd begun the journey back to happier times. I expected some ups and downs but at the moment, in full fledged sciatic pain, im thinking differently.
On Friday I was lucky enough to burst out of this bubble that pain puts us in, and see my friends. I had a ticket to the Swinburne University seven deadly sins ball in Melbourne at Albert Park. I did not dress up in costume but it felt nice to dress up in a cocktail dress, put makeup on and jewelery. Although this seems quite girly, I haven't done this in so long, and am normally the type of girl that does wear a bit of makeup each day, and puts on pretty earrings etc, but in my current state, i'm not doing that anymore, as i don't see much point if im just going to slouch around the house, or get some groceries. Anyhow I spent a few hours at the ball, where i was in so much pain that i could not dance, i just moved in between the two tables my friends had paid for, and caught up with my lovely friends, who i had not seen in so long. Overall i enjoyed the night, with great friend, good food, and a glass of champaigne.
This brings me back to the bubble of chronic pain. I was reading a friends blog many weeks ago now, and i could not descibe it better than what she has.
Hayley Caferella has a particular way of writing, that i could not do, however its like she takes the thoughts straight out of my head. Although I do not suffer from full fledged CRPS (chronic regional pain syndrome), i admire her strength. Click here to read her post last month on friend envy called "coping with heartfelt happiness thats laced with envy". As i mentioned before its like the words have leaped out of my head and into her hands for her to write what i feel, and im sure many others do too when they are placed in the bubble we live in when we are in pain. Hayley's post describes it perfectly.
Anyway to end when the title of my post reads, I had done a near complete 180 degree turn around in the four weeks after hospital. Now Im almost back to were i started so a near 360! Ive been in this current flare for almost a week now, and rather then seeing a light at the end of the tunnel, its getting darker as the days go on. With Christmas just around the corner, it means a Christmas break for doctors (specialists), hydro pools and physios, and puts me back in such a familiar place of waiting. Waiting for these people and places to come back from the break after new year, to help my ailing body.
Feel free to Email me at jl4cummins@students.latrobe.edu.au
sincerely,
Jen
xo
PS: A pain doctor confirmed last week that yes i will defiantly need a hip replacement, but its just up to the doctors to decide when. FFS do i get a say? DO i get to live my life now, or should i be made to wait my youth out in pain so i can live when im in my 60's?
Monday, October 26, 2009
Woah? What on earth has happened?
Clearly, I haven't written in a while, but all in good reason. You see I haven't had access to a computer in the last 2 weeks, and some major shit has happened.
I went up to Uni (a 2 hour drive away from my Melbourne home), still in a lot of pain and still on crutches the day before i had to present a maths project (an oral presentation that had been put off for 5 weeks due to my "injury"). Arrived in good old Bendigo and although extremely sore from the trip, went off to the pub for a meal, and went back to my house. It was a pretty early night for me, and i went off to sleep as normal but many hours earlier than normal.
About 4am, I awoke in extreme pain, in my left butt cheek. I already knew i had a tear in the gluteus maximus, and was unable to explain the new onset as i had been asleep! Anyway i couldn't get comfortable and the pain was worsening so i took some medication. I cried quietly in pain while my mother slept beside me.
Although i knew something was seriously wrong, and i wouldn't be able to get back home to Melbourne on the medications i had available, i had to go to Uni and present, knowing it would only take 10-15 mins and i would be able to go to the hospital straight after.
I painfully arrived at the hospital in 10/10 pain, and was told to go wait in the waiting room. Actually she told me to take a seat, but knowing full well i couldn't sit down, which was half the reason i went there in the first place, and after informing her of this, she told me to lean again something instead. Within 10 minutes ( i wouldn't of lasted much longer) the doctor came to call me in. My mother followed. I layed down in the bed, then had to put on a gown as the Dr.'s decided to take a E.E.G. . I had high blood pressure and an extremely high heart rate, not unusual for someone in so much pain. After explaining the history to what felt like 10 different people (nurses, Dr.'s, student nurse's, student Dr,'s etc..) the chief Dr. came in to examine me. at one point he hit what seemed to be a bomb, as all pain spots in my legs exploded into extreme pain. The lovely screen that showed my BP, HR etc also erupted as my blood pressure rose to alarm levels as did my heart rate at 145 bpm.
The chief doc left to ring my new doctors to decide the best course of action. before i knew it, i was being wheeled off to the small intensive care part of the ED, as they started a Ketamine drip or shall i say 'shots mixed with a saline bag'. The first shot consisted of 20ml and i have never tripped out before, but i can tell you, i don't want to do it again. All i remember was a horrible experience, with people staying still, but the rest of the room becoming a blur. It reduced my pain for a short period of time, but as i came out of the hallucination, the pain came back, just as bad. Over the course of an hour, i had another two 'shots' containing about 10ml - luckily they didn't cause any hallucinations however didn't do much for the pain.
Before I knew it, i was being told they had a bed for me at a private hospital in Melbourne and were going to ambulance me down, and the paramedics would be arriving in approximately 5-10 mins. Holy shit somehow between 11 -2 disappeared in all of that and next thing i was aware of i was being transferred into an ambulance.
The Ambulance consisted of a bumpy ride of about 180km, i was treated to 2.5ml of morphine every half hour, on oxygen and we changed ambulances at Kyneton. I arrived at the hospital where i am now, between 5-6pm and i have remained here ever since. Before i forget to mention it, I spent my 23rd birthday in here (friday the 16th) which sucked, but i got lovely visitors which/but i guess it was just a good excuse for my friends to come visit.
Anyway back to that Thursday night I was put on a sub-cutanious ketamine drip which is attached into your stomach fat:
which was followed by an inflamed area with 20 hours or so:

After 4 days of this I eventually got it put in IV but I've also managed to get a rash there too. Ill save you the picture of my itchy scratchy spotty arm.

Monday, October 5, 2009
Who the F*@% am i shaving my legs for?/What do you do when your life is in the hands of another?
To begin with i feel like i should start my blog with like a 'dear diary...' attitude because that's what it is essentially. Anyway I'm blogging about my week. My week was mostly made up of sleep and watching either TV shows or DVD's of TV shows. Interesting stuff huh? yeah that's how my life runs. Well here's the story of my week in BOLD
Well actually it started off with on Monday i rang the pain clinic that i was with for the past year and a bit, because although i don't necessarily get along with the doctor there, i have complete trust in their Physio, and value her opinion. I rang up and asked for an appointment and I got told because i have not been in since January, i was going to have wait up to 3 months for an appointment. This particular pain clinic has a 3-6 month waiting list for new patients so i naturally felt like I WAS BEING PUNISHED for not being in pain, or better yet, did not need their services for so long. I was incredibly angry. I chose not to take the end of December appointment because who knows what will have happened by then.
On Tuesday i had an appointment to see the GP. I see him on a pretty much 10 day basis, and for one time i was glad to see him. You see, he had taken two weeks leave, and not left any notice for another doctor who i was going to have to see in order to get my medication from. Nor had he discussed my situation with any other doctor in the clinic, so in order to get the medication i need every 10 days, i had to go through the same old story of what happened to me (ski accident - surgery 1, surgery 2, surgery 3 etc) to get what i needed to get me through till when my GP came back. My GP is fairly laid back and told me to continue treating my pain with the medication, after i told him i felt i had hit the end of what i can bear. rock bottom. the end. depression. Its just keep on truckin'
Wednesday, Mum rang the pain clinic, got the nice receptionist who put mum through to the physio, and once mum had explained the problem, the physio said "i had scheduled in administrative work Friday morning but come in then, ill see her" Bless her and my mum. what would i do without her.
Also on Wednesday i rang my surgeons office and spoke to his PA. I got told he had been forced to take a week off by his wife. Understandable when your at work at 7am and don't get home till after 8pm on some nights and have young children. However I had discussing what i wanted to say to him with mum, and i honestly didn't think i had the guts to say it to him because i knew I'd get emotional, so i told it all to his PA instead. I still got emotional but, it felt better out than in. His PA was an Orthopedic nurse so she's down with the lingo, if you know what i mean. I pretty much questioned:
- If its the tissue around and inside the joint cant we eliminate the problem? Can he do a partial hip replacement to do so, or..
- How long do we have to dance around the problem of the tissue in the hip causing me problems ? and
- How many times do i have to go through this for months at a time before you'll (he'll) do anything about it? 4, 5,10?
- I'M 22 for gods sake, trying my hardest to continue with life and my studies, with something that is holding me back constantly. I know i suffer from chronic pain. That's from the nerve damage, which I've had from day one after the surgery. I have managed to deal with that since, however when pain like the one I'm in now arrives, this is not something that can be treated with mind over matter, and physio and everything else that is involved in pain management.Ive done that before. I know when somethings wrong. Do I have to spend the next 10 months in and out of hospitals like i did last year before you take my word on something is mechanically wrong, or do you want to wait it out and make me prove you wrong again? Well if only my surgeon read this blog because he might understand how bloody angry that it makes me. I litterly feel like Ive hit the end.
I sleep all day, I'm awake most of the night. Sleep isn't a quality sleep. Its so difficult to shower now, and causes so much pain and so much effort I'm only showering once a week. And that's not a nice thing to put out there on the Internet people. i don't want to admit that but this is what its come to and I'm being brutally honest. I showered this evening and somehow found myself shaving my legs. Who am i doing that for? i hardly leave the house anymore, i don't see many people. Most social contact is unfortunately either txt or over social networking sites. I guess that's the one bit of vanity I've got left in me. I shaved my legs for me i guess.
Thursday: i don't remember much about this day, which probably means i slept the day away, however i do remember measuring my legs at night. I previously measured them after i finished up an assignment of exercise and since June, which has been the onset of pain, so i have been doing nothing, i have lost
7.5cm of hips/bum
2cm (R)(L) top thigh (under the bum)
2cm off (R) mid thigh
5cm off (L) mid thigh
2 cm of (R) calf and 3cm of (L) calf.
Friday: Friday was the biggest day of all! i went to the physio, she gave me exercise to help combat muscle wastage which i can now physically see, answered a few of my previous questions, and ultra-sounded my hip. The i went to Aldi, where i bought a laminator. Word is that it has been a very expensive maths assignmnet due to all the laminating costs, and altho i havnt got round to it yet, this is my first step to doing my assignments when i can. I also bought a paper cutting maching thingo.. you know, you measure your paper and then slide the blade across.. the word for it has escaped me for the time being but... It was a very big day out for me.
Sat/Sun almost didnt exist because i slept through all of it.
To sum up what to me has been a shitty week, has actually been fairly good. i saw the GP, physio, did i mention the chiropractor on monday? probably not.. she put my "major crutch back" back in place.. and i got to tell my surgeons PA what i was really feeling. MY life and wellbeing are in my surgeons hands now, and he has to decide what to do with it. Im over it.
At least i get to countdown 11 days to another birthday spent on crutches. could it get anymore depressing?
PS i wrote this all out earlier only to lose it to a problem error. the first draft was better.
signing out,
Jen xx
Thursday, September 24, 2009
pain free?
I have been absent from this blog for a small amount of time yet so much has gone on.
In my last post i mentioned my pain had worsened. Well you see it worsened to the point where my mother rang my surgeon (who by the way is my only doctor in Melbourne at the moment) and in distress told him that something needed to be done. He agreed and arranged for me to have a cortisone injection with some long acting aesthetic under some local aesthetic. Anyway he tried to get me in that day, but with no long i had to last out the weekend till Monday where i was fortunate for doctors at another private hospital were able to fit me in.
After looking at the joint and comparing it to my good hip under ultrasound, they moved me under x-ray to perform a small procedure (Over heard doctors discussing i might have also ripped the gluteus maximus from the attachmant site on the tracanter as this is a site of pain increase in the last week). This procedure is almost identical to one Ive had several times before (fluoroscope MRI - without the MRI part) and each time, it becomes more painful.
It started off painful and got worse and worse. i was crying, then screaming with the pain. After 20 minutes of the doctor moving the needle filled with long acting aesthestic, cortisone and contrast inside my hip joint, i threw up from the hysteria and pain. The doctor was so upset with how I'd come through this procedure, knowing he was doing the best he could. They decided the best was to proceed with this procedure properly would be by using pethodox. They don't use this in the hospital and had to get the drug company out to show them how to use this medication. The booked me for 12.30 the following day.
I arrived at the hospital on time, and while the drug rep was late, the doctor's and nurse's were wonderful. I even had one of them say to me, "i couldn't stop thinking about you all night".
Once the drug rep turned up and showed the doctors and nurses in the room how to use the pethodox.. (the wonderful green stick ambo's give for pain if you haven't caught on...), I even helped answer some of their questions like how long does it last for and what happens when the patient covers the oxygen hole at the top (20 mins, more pethidine, less oxygen = less pain). Clearly I've been in the hospital system way too long, even yet been ambo'ed off to hospital way too much. Anyway the decision was to do this under the influence on my own medication taken an hour before hand (valium, endone), and use the pethodox as well. Also instead of doing it under x-ray, to perform the procedure under ultrasound as there was so much scar tissue within the joint space.
I came through the second procedure not feeling a thing. I am so greatful for that little green stick and now its just a waiting game. Does the cortisone make it better? does it help with the pain? has it reduced my pain levels?
unknown as yet.
As with the first appointment and with the second the local aesthetic has its effects. first you cant raise your leg... makes it very difficult to get dressed even to raise your knee to put an uggboot on or to lift you legs up on the couch. Dead leg. Luckily its gone by the morning. All to have it repeated the next day. Last night i was so over being like this. Will i ever reach a level where I'm pain free? I ended up taking my frustration on my poor dog, when taking him out to the toilet at night. He'd had gone out roughly about 5 mins before me so in all fairness he had probably already gone "wee wee's" (he generally wees on command) but i couldn't deal with his barking at the possums and disobeying me, so i ended up yelling at him and storming off on my crutches in pain back in side.
Its now roughly 36 hours since the procedure was done, I've mostly slept during this time, however I think i am feeling slightly better. not emotionally or mentally, but physically i may be feeling less pain, however I'm not sure just yet.
Its now been 3 months since the onset of pain this year and when it came back, i knew something was wrong, and often was told and scans said otherwise. However I think yesterdays procedure notes might be a little bit on my side for a change. Through all of this i feel like i know my body better than anything or anyone, and each time I've been right. Sure I've coped the label of chronic pain which I'm OK with, however each time I've been in a state of pain there has been something physically wrong with my body. Why would now be any different?
Anyway there is a few questions posed here and one again any feedback is wonderful.
comment, twitter or email even facebook :)
jencummins16 is twitter and facebook
jl4cummins@students.latrobe.edu.au is email.
signing out with love,
jen xo
Saturday, September 19, 2009
FML
I don't know how many of you exists but ranting helps clear my head.
To update you on my crazy but lazy prescription filled and painful life:
- My pain has worsened yet again. I didn't this this was much more possible, but it has.
- the vastus medialis, and gluteus maximus hurts when I weight bear.
- 2 out of 3 of my main doctors are currently on leave.
- no other GP in the doctors rooms knows my history like my doctor does which makes it incredibly difficult to get your medication because it is narcotics.
- I keep trying to pretend I am able to continue with uni but part of me knows its a waste of time and money.
- I have an infected right ear. (just to add put it in the mix..) which was an infection in the pieced part of the lobe which has travelled up into the cartilage, so its massively swollen, bleeding (cos I keep picking at it) and I cant put any pressure on it.
Anyway after I found myself breaking into tears more often than not, I decided I refuse to continue this way. I'm back up to 20mg of Oxycontin and I'm still taking endone 10mg at least twice a day, and its not even helping. I clearly have an allergy to an ingrediant in these types of medications because I end up having to have an antihistimine about half an hour later.
I have been rubbing liniment (feel heat) and linica(sp?) cream on my butt hip and high/hamstrings... and I get no physical reaction from the liniment. I get the reaction on my back but no where else. Can anyone explain this to me? Why am I not feeling anything??
The linoca cream is supposed to help bring out bruising and swelling... and it has done so to a small amount. My left leg is defiantly swollen but where the linoca cream has been rubbed... it looks dirty... like old bruising perhaps?
I made my mother ring my surgeon today (because he's the only doctor of mine left in Melbourne atm), and I refused to talk to him because I am just getting so upset by this. I cry just talking about. I just don't understand how people can be left like this. How many other people are experiencing pain like I am? let alone how many of them are 22? Why wont they just admit me to hospital? I cant deal with it anymore.
I even managed to burst out in tears at the hairdresser today. The drugs are making my hair fall out. Not in big lumps like chemo fall out, but alot of breakage at the scalp. It's effecting my whole body also . The toxins are trying to get out somehow and they have chosen the pores in my chest and face. Now this is not nice for a girl who's only ever had the occasional pimple once a month. It feels disgusting. Way to go self confidence. ba-bom
I'm honestly at lost for what is left for me to do, or where to go. I'm struggling physically, mentally and emotionally right now and the right people are not around to help.
Oh and in regard to my swollen painful right ear.... it makes sleeping difficult when you can't lay your head down on the pillow on it's right side because it hurts so badly, but you can't lay on your left side because of the pain in your hip...
So its a really big FML at the moment.
signing out,
Jen xx
Tuesday, September 1, 2009
Thoughts....Heath Ledger...
Wow apoligies for posting again so soon but some disturbing thoughts have crossed my mind several times in the last few weeks.
In a previous post 'lyrics' I listed some of the medication I am on for pain management.
You see apart from those listed and some other non pain related medications such as the pill, I also take antihistamines (for hay fever which I get all year round), and a tablet called 'somac' which just stops any heartburn which I started getting from taking all these tablets... anyway don't read this the wrong way but sometimes I'm afraid I'll somehow have a "Heath Ledger moment" or accident, where its not the case of too much of a few specific drugs, but just too much of a combination of drugs, particularly over a period of time, when pain is super bad.
You see, when I'm in pain I space my medications out. I take the medications which are the 'smallest' in the pharmaceutical line of pain relievers ie; panadene forte or imobrufen, even moving up through to Valium depending on the type of pain, up to where I can not take any more pain and take the more 'heavier' medications such as Endone.
What I'm most concerned about is that how harmful can this be over a 6-8-12 hour period and how much risk am I putting my self at when doing this*
You see all Heath ledger took the night he died was two different types of sleeping tablets, Oxycontin, Endone and Valium. And he was just to trying to sleep at night.
Now I'm no fool and would never do something like that for something as little as sleep but it does cross my mind that sometimes I have those exact same medications within a four hour period particularly at night. If any of you who read this have any advice, please post a comment or email me at jl4cummins@students.latrobe.edu.au. thanks guys
sometimes scared so I'm,
signing out,
Jen xx
*things to ask the doctor
Monday, August 31, 2009
another week another doctors appointment...lets hope this one fits
As the title of this post tells you, i seem to pretty much see a doctor every week. These doctors range from my GP, surgeon, Neurologist, and now ill be off to see (another...) pain specialist.
However on Friday i had a miraculous outcome. I was at the neurologists, and after discussing my current pain situation and all, he examined e and said "I think you have something called meralgia paresthetica. It's an entrapment of the femoral cutaneous nerve which we can fix by either giving you a cortisone injection (into the groin) or you'd need to lose 15-20kg"
It's been a long time since I've had a doctor be so confident in their diagnoses, and although im not entirly confident that this is all that is causing my pain, I hope it may give me some relief.
Now I'm not afraid to admit I'm a big girl. I weigh roughly round 100kg and could stand to lose a few (ive already lost over 9kg!!), but even when i was super fit and had hardly any fat on me (<25% in 2002-2003) I still weighed 82kg. All chronic pain patients know, and are told repeatably (mostly when your feeling your worst) that weight loss will help improve your situation and help with the pain. However, to achieve this acquired goal, when your in such a situation is rather hard, as it is often hard enough just to shower and get out of bed for the day, let alone go out for a jog!
Anyway I'm clearly going to have the cortisone injection, and luckily enough i was able to be fit in to have it done on Friday the 4th. It will take a few weeks for the injection to work, and if the diagnosis was correct, i should slowly have a decrease in pain over a period of about 3 weeks. Right now id give anything to get rid of this pain in my groin. It's right where the adductor muscle or shall i say it's ligament, joins onto the pelvic bone. Its quite an awkward place, and lucky for me, that's where the injection will be going in. I've already been warned its quite a painful process. fingers crossed, the doc injects the cortisone into the right nerve and also its the right diagnosis!
In my last post I discussed depression and whether or not you know if your going through it? With the guidance of a new friend, someone I've never met, yet I feel like I've known her, or somehow I am her, assured me that at some point we all get depressed to some degree about what we are going through. Since my last post, and reading her comment, I've tried to get up each day for a purpose. Even if it was just going to the supermarket with a neighbour, just to get out of the house. I even hope to return to uni this week. With each of these ups and downs, its getting easier to distinguish the real ones, not just the ones in between.
signing out,
Jen xx
PS: Yes, I know there are many ways and combinations to lose weight other than just going out for a jog, however its not as catchy and as good as that sentance. :)
Friday, August 28, 2009
lyrics...
you see the lyrics go:
I remember when, I remember, I remember when I lost my mind
There was something so pleasant about that place.
Even your emotions had an echo
In so much space
And when you're out there
Without care,
Yeah, I was out of touch
But it wasn't because I didn't know enough
I just knew too much
Does that make me crazy?
Does that make me crazy?
Does that make me crazy?
Possibly
And I hope that you are having the time of your life
But think twice, that's my only advice
Come on now, who do you, who do you, who do you, who do you think you are,
Ha ha ha bless your soul
You really think you're in control
Well, I think you're crazy
I think you're crazy
I think you're crazy
Just like me
My heroes had the heart to lose their lives out on a limb
And all I remember is thinking, I want to be like them
Ever since I was little, ever since I was little it looked like fun
And it's no coincidence I've come
And I can die when I'm done
Maybe I'm crazy
Maybe you're crazy
Maybe we're crazy
Probably
Now Ive sort of interpreted that as -
Remember when we were were younger, and had no care in the world?
Now that we've grown older and the damage is done, we can't change what we have done but we know how to turn our life around...
Enjoy your life, now that you know who and what's around you,
Theres a reason for this, and you have to get through it because you set out to achieve your goals....
Now I'm not quite sure why this song hit me like it did, maybe the chorus because Ive been thinking a lot about depression lately. Am I depressed? Am I falling into that category? Ive been at home for two weeks now. One week was teaching rounds, which i couldn't do, and the second i couldn't physically get to uni, But in these two weeks my pain medication has doubled and I'm sleeping from 3/4am through till 5-6pm. There hasn't been much of a reason to get out of bed except take more pain medications and feed the dog and the cat. I don't know if I'm so drowsy because of the massive amounts of pain meds? (which are helping!!! but no one can live this way), I'm barely eating, because when I'm in pain I don't get hungry and one of the side effects of one of my medications is a food suppressant.
I am going to see my GP on Monday to try and sort out some sort of middle ground. The amount of medication I'm taking is helping but it isn't sustainable for any body..
20mg Oxycontin - am/pm
12.5mg topamax - pm
50mg allegron - pm
+ imobrufen, Valium (7.5mg) and endone (10mg) when needed. So far Ive been taking the valium morning and night, but I've cut down on the endone because it makes me itchy.
...and as far as they can see (with MRI) there isn't anything wrong physically with my hip except swelling. It upsets me that people just pass me around doctor to doctor. "Here, go see this person"... they dont care that its going to take 6 weeks to get an appointment. That's what they've done this time. I'm supposedly off to see a chronic pain doctor who deals with soft tissue injuries. I'm most likely going to get the same pain spiel from the other pain specialists Ive seen.
until another day, im off to see the neurologist tomorrow, or shall i say today... lets see what he has to say for him self.
signing out,
Jen xx
Friday, August 21, 2009
Wow thank you
QUICK UPDATE: I didn't end up going to hospital the other night/day. I went to my local GP instead and he doubled the amount of Oxycontin I'm on. So things are slightly less painful but I'm a little bit more sleepy and a little bit less able to focus. I'm also on a quarter dose of a medication I was on a few months ago, but I had every single side effect listed so I stopped it. lets hope a quarter dose of topamax wont have the same problems.
- I dropped mum off at the airport last night. Unfortunate timing for me and my pregnant cousin (who is almost due), but mum and her sister had booked a 10 day holiday in Thailand. So I'm navigating around home on crutches (sometimes), and trying to look after the cat and the dog. It does
n't sound too hard you'd think, but if you have met my dog, you know he's not a real dog, he thinks he's human but I love him all the same.
Thursday, August 20, 2009
What do you do?
I'm writing this blog in desperate need of help. I'm quite aware that hardly anyone reads this, and for those of you that do, Thank you. It would mean a great deal if you could just post a little comment at the end so i know who my audience is.
Question: What do you do when you need to go to emergency at your local hospital (the Alfred) but you know you are automatically going to be in for a 4-6 hour wait because your a 'chronic pain' patient, yet you cant afford the $500 odd dollars to go to your private hospital because they will charge you this much just to be seen, medicated and most likely be sent on your way just in Emergency?
Answer: You take as many medications as you can in a specific time limit, and monitor at home. Or as I like to phrase it.... you suffer until your so medicated you give up.
You see I was supposed to be admitted to hospital on last Sunday. I rang my surgeon on his mobile, told him I could no longer cope with the pain by myself. He said he would arrange for me to be admitted at the private hospital. This is all fine you see. He rang the people who arrange your admission; they call you and get it all organised. Now because I was coming in for pain management and to find out why I was in so much pain, it was difficult to see if my health insurance would cover it. Between the admin staff and nurses, my mum and I decided it was best if I was admitted the next morning as we could confirm with the health insurance company that I would not be $7500 out of pocket instead of $500. This was all fine, I was happy with this arrangement. We rang Monday morning only to find out my surgeon, had not filled in or signed any paperwork which meant the nurses could not administer me medications etc. As I was getting more annoyed we were told that he was away that day and could not be contacted. Since then I have not heard from him. I have not been admitted to hospital. I have put up with the ever increasing pain. I am slowly getting more depressed about my situation and how to cope with it all (again).
Almost two years ago after my second hip operation and $50,000 odd out of my parents pocket I signed up for private health insurance. $35 each fortnight is direct debited out of my bank account for basic+ (plus) health insurance. this means for each calendar year I get unlimited hospital cover (including doctors fees, surgery and anaesthesia fees etc) for a once off payment of $500 (or 2x$250 depending on your choices when signing up...), ambulance cover and a range of extras cover such as dental, optical, physio etc. This hospital cover was extremely handy when I had my 3rd surgery. However if you arrive at a private hospital emergency room you are not covered for any scans or treatment you receive in the ED. For Epworth hospital this out of pocket charges is also around $500. As a student with no job, because I'm unemployable as I'm a liability and also a full time student and who has a mother living on an allocated pension, neither I nor her can afford this.
Right now I'm in 10/10 pain, and I've taken all the possible combinations of pain medication that I can take without overdosing and can’t do anything further than wait it out, and wait for it to pass. I can’t afford private emergency department costs and I don’t have the energy to wait or to be pushed aside and wait in a corridor in a public hospital.
You see, I have a big issue with the Victorian public health system because I spent from November 2007 through till august 2008 going in and out of hospitals because I was in severe pain, of which I knew something was wrong. Straight away they shoved me into the chronic pain patient list of which I have remained on ever since and continue to be treated as such. 'Chronic pain is classified as having constant pain for a period of more than three months' of which I had yes, had pain for various reasons in the past but there was a fairly good reason for that pain and that was because I had shredded the cartilage in my hip. SO for a good 10 months I was in and out of hospitals being poked and prodded, scanned and radiated and nobody could find the reason why I was in pain. The doctors even sent me to a rehabilitation hospital of which I went berserk at their reasoning for it (which was I needed to stregthen my core which in turn help with my hip pain), by saying 'You cant rehabilitate something that you don't know what's wrong or what's affected!!!'
I eventually proved this theory right because after 2 and a half weeks of physio twice a day, psychological assessments, I eventually told the doctors they were stupid for not realizing this and it was a waste of a bed that someone ACTUALLY needed.
Eventually months down the track and one too many doctors seen, I had my original surgeon do a specific test which showed I had boney growths growing inside the cartilage, giving a bone on bone feel, and also a severe build up of scar tissue (over a handful which was later removed)which was inhabilitating movement. If only they had trusted me when I told them something was wrong 10 months earlier, we could have saved a lot of taxpayers moneys, time, effort and my mental health. They also realised the pins they had inserted into my femur a little over a year beforehand were beginning to become infected. Surgery fixed me right up and for almost a year, life began to return to normal. Until now.
That's right I can tell you where you where the best nurses are, which Melbourne hospital has the best food, right down to the who the nicest people are that take you places within the hospitals (sorry I cant think of the job name...transporters?? you know who im talking about)
- Im hurting (in the heart and in my arse,leg and groin)
- im dissapointed in my surgeon
- im so worried that this new scenerio will have an outcome like last years, that it brings tears to my eyes.
What on earth did i do to deserve this? I know there is people out in the world much worse off than me. They suffer just trying to survive, but right now im having a 'why me' moment. And I think I deserve to have that moment, and think of how I might survive?
As im on crutches at the moment, im completly dependant on my mother, and she had already planned a 10 day holiday of which she leaves for tomorrow night. How the hell am i going survive that time by myself? Dont get me wrong, im glad she's going, she needs a break and I've got wonderful neighbours and i know if i need them to do something, they will, but what about in the middle of the night if something happens? what about during the day when everyones at school or work. I feel like i should be in my late 80's and frail... I still have to figure out how im going to get to Uni next week to do a presentation worth 60% on thursday. FML right now, FML.
Thanks for listening. You've made me feel much better and the pain is down to about 8/10.
Signing out,
Jen xo












