Time

I'm so sorry I haven't posted in such a long time. Timing is everything and it's something we all understand.

Lately it's been a cross between bad news, more surgery on my throat, more doctors appointments, scheduled hip operations, cancelled operations, new surgeons, new surgery dates for my hip, delays in surgery dates become my throat is too damn messy and too damn complicated and a whoooollle lot of pain. AND I mean a whole lot of pain.

These last 4-5 months physically and mentally have been the hardest. I've battled through some of the worst pain I've experienced in quite some time, and I hit that emotional wall where everything just became too much. I'm not going to go too much into it at the moment but this is where I'm at.

Looking ahead: Surgery on my hip on the 12th of December and personally, I hope its really bad when they get inside. Truth. Although they know I'm in pain and have every right to be having a good whinge.... I want them to go and question...why wasn't something done sooner. I'm sick of all the BS and I want my life back. Even if its just apart of it, a grasp of Independence is a world away from where I am right now.

Ill hopefully post properly when the time is right.

- jen xo

A thought provoking quote, and what it means to me?

Of all places I did not expect something like this to come to me as I was watching Brat Camp - It's a UK television series about young teenagers being taught different life skills and ways to deal with life itself. It comes the Anasazi foundation, and they run a therapeutic course in the Arizona wilderness in the USA, where they take spiritual approach to fixing broken families based on native American philosophy.

In a recent episode during the Mums and Daughters series I heard this quote and it made me feel the need to share it.

"....You have a lot of strengths, if you'll let them come through, but i think you hide a lot of this stuff behind your anger. And that's how most of us deal with sadness, is to cover it up by anger. It's much easier to be angry, its much more powerful than it is to be sad. Sad makes us feel weak." - Fred Dodini [Clinical Director, Anasazi]

This quote or statement as you like, feels so powerful to see, hear and to even read. I can see this has been applied to my life lately, especially on occasions where I've built up an expectation of something or someone, and it hasn't gone my way. Saying this makes me feel selfish, but to understand it I feel empowered. Nobody likes to feel weak. We all want to be powerful in one part of our lives or another whether it be in our occupations, our relationships or within ourselves.

I'm leaving this short so you can think about it. Think about the times you have covered up sadness with anger? please comment and release these thoughts.

Thanks,
Jen xx

December Catch up *editited in March*

December 2010 catch up blog!


I had a fairly good December for all the catastrophes that came in the months before it. It did however start the month with a pretty nasty fall, after I dodged our aging senile cat. I transferred all my weight onto my bad leg, so i would not run into her, however my leg gave way and I accidentally kicked the cat accross the room as I went flying head first into the tiles. I ended up with lots of scrapes and bruises, a nasty bump to my left eye and side of my cheek and forhead, a very sore right knee, and a jarred left hip! Luckily the cat was fine! I had had another cortisone injection into my hip in the very beginning of the month, which allowed me to have a night out with some of my newer friends and get through christmas and new year. Andrea, Hayley and I have all met in person before, even though we all originally met each other off twitter. Hayley and I have become extremely good friends over the last 18 months and have become very close as we share a similar issue with pain (check out Hayleys blog here ). This night out with her and Andrea (This was our second time hanging out with Andrea) was incredibly fun and we met her at Felix bar in St Kilda for a night of drinks, a bite to eat and Wednesday night comedy. Here’s a few pictures from a very enjoyable night. I hope to do it again soon.

Andrea, myself and Hayley at Felix Bar in Stkilda

Hayley playing around after a few drinks

Hayley and I

Christmas time


I managed to get through Christmas down in Geelong at my Cousins house. It’s a 35+ year tradition, that every year we trek down there for the day, have a big lunch with the family, sleep, pass out our KK gifts and head home about dinner time. This year was so lovely, as many other years are. One of my cousins had come home from London where she has been living for quite a few years now, so it was lovely to see her. Us “kids” all have a good laugh at the expense of our parents and grandparent/great uncle as they age, making under the table jokes and somehow turning things round so that they sound like some sort of sexual innuendo! Its crazy but always a lot of fun. I always have a good laugh with the Notini’s.

My Cousins Suzy and John Paul

Christmas Tree!!!

and here is my brother Scott... Pondering the thought of christmas (NOT)

NYE


Finally to cap off December, I was invited to Hayley’s house for NYE. She only had a small number of friends over, but it was lovely to just chill, chat & air our grievances (as opposed to making resolutions). As the clock struck 12, and we screamed happy New Year, we ran out the front to find the nearby fireworks. As we stood at the corner, we looked around to see many of her neighbours doing the same. I remember standing on the corner of her street and seeing in the distance, what looked like what was about to become a nudie run. I saw it coming. Both of them, as the two boys ran past us and stopped under the streetlight. It was incredibly funny, and I think we all had a good laugh at their expense. I had much fun, until *some of Hayley’s other guests became a bit “overwhelmed” with there alcohol intake. As being the 'sober' person of the group, I sent everyone to bed once it started to get messy.




** Ive been requested by one of the individuals at this small NYE party to edit out my last part of the NYE adventures (Even though i had previously posted this blog peice a long time ago). It's really not something i wanted to do, however out of respect, i've deleted my telling of a story which WAS the highlight of MY night.**





This latest post brings me to 2011, and now that I’ve caught you up with all my drama, and I have read all of yours, ill soon blog again with more recent happenings in my Chronic Life.



Take care, and don’t slip!
Xx Jen

Day’s… Week’s… Months

It literally has been days, weeks and months since I last blogged. This is mostly because I’ve simply been too exhausted, to tired and too ill to sit and write what I hopefully am doing right now.

Without reading back, I wonder if I had mentioned I was suffering breathing problems? Pretty much from October 2009 through till late August 2010, I suffered from what I now know is called strider. It’s the sound that comes in relation from a narrowing in the throat (stenosis). To ignore the medical terms, and to listen to me, I sounded like Darth Vader. Add this breathing noise to the sounds of using the crutches and it really like I’d walked off the set of a Star Wars movie. Anyhow to catch you up quickly, I had ended up down at the local hospital one night with difficulty breathing. Not just noisy breathing, but the actual process of moving air into my lungs, much like an asthmatic. This prompted an outpatient appointment with ENT (ear, nose and throat) at the Alfred hospital 3 months later. Once I was seen, and the young registrar had numbed the back of my nose, and inserted a camera up it and down the airway, many names were screamed. Not swearing from my mouth but the registrar yelling to other doctors to quickly come see what this young doctor was seeing for the first time in his career. I think I better explain this in the most basic way I know how:




A normal airway is roughly 10cm wide (the purple area on the picture above), and when I was scoped the young registrar saw a narrowing in my throat (just below the vocal cords) of 4mm in the trachea. This was life threatening. I was very quickly looked at by every single ENT doctor, as many up to 6 at a time lined up to have a look. I should have been dead. What I was experiencing is so incredibly rare in an adult, especially one that is a) still alive and b) moving around on crutches and talking! A “sub-glotic stenosis” is more commonly found in premature babies, when their throats don’t develop properly. This is why I caused a crowd.

I was immediately passed on to the head of the team, the head doctor and listened in shock as they explained I needed emergency surgery, they would need to perform a tracheotomy (where they slit the throat open to gain access to the airways). I was moved down to a re-suss bay in Emergency as they tried to secure a bed in ICU until they were able to operate. They needed an operating room available, and while I needed emergency surgery, they could manage my airway until then. However while down in emergency, the situation turned even direr and my airway decreased to 3mm. Within 5 mins, the whole team of ENT doctors came down, had a look down my throat again and I was told I would be in theatre within half an hour. Most of this information passed straight through me, as I was in shock. My mother was signing forms for them to do what they needed to keep me alive, and as I heard more, the more distressed I became and my breathing became even more difficult. I was rolled into theatre where there were at least 25 doctors, a dozen nurses and 2 anaesthetists. They spared me a tracheotomy (thank goodness!) and used a balloon like device to burst through the tissue that had formed, which was causing the narrowing/stenosis. Once I came round in recovery, I felt as if I had tonsillitis, pharyngitis AND laryngitis! And by that I was in an incredible amount of pain, and I couldnt even swallow. It felt like razor blades had cut me up inside. My throat was so raw and I spent the night in the HDU (similar to ICU – High Dependence Unit). Anyhow I was released the next day and had to go vote! That was the last thing I wanted and I couldn’t even enjoy a sausage afterwards. :(
To cut the story short, I have been having check ups every 4 weeks since, and since that fateful day in august, I have needed an operation every 8 weeks (20th of August, 28th of October & 16th of December 2010 so far) to open my airway. In the 2nd and 3rd surgery, they have used the same ballooning technique, but also used a laser to break up the tissue, and have applied a chemotherepy drug called mitomyocin C. First they painted it on the affected area of the throat (just below the vocal cords), and in December they injected it. However my throat continues to close, and now its a choice of being able to move (on crutches) and not breath or to not move at all and manage my breathing?
This was completely not what I needed when dealing with my hip as it was. Besides the fact I cant move, this throat problem (which Why i have it is still unknown as is why it wont stay open...)affects almost every aspect, especially with relation to pain. Im not allowed to start feldenkris (a pain management therepy)until my breathing is under control, and I cant seem to do my deep breathing exercises for pain, as I run out of air!
When my airway closes, I have noticed that when I sleep, not only am I sleeping longer, but getting a very poor quality of sleep (sleeping for 8 hours, feeling like I’ve slept for 1 hour), consistently tired, I become lethargic and my voice changes into a more husky sound.
So I apologize about my lack of blogging over the last few months, sometimes there’s been nothing I’ve wanted to do but blog, but haven’t had the energy to type.
Stay tuned and I’ll try and fill in the end of last year.

Stay safe and keep breathing ;) - that's what ill be trying to do!!!
Xx

PS: As of mid Febuary my throat is open to just below 50%. I will have another check in 2 weeks times, however it will most likely need to be dilated again.

Take a chance on me

Will you take a chance on me?

If you had the ability, the skill and the tools to help someone in need, would you?

How far would you let someone deteriorate before intervening?

If there was the smallest possibility of changing someone’s life for the better, would you do it?

These are all questions I want answered. You see, I recently got my results back from a recent MRI and CT scan of my left hip, and the findings were not great. Multiple cysts, bone growth on the head of the femur, irregularities within the acetabulum and fraying of the labrum. To simplify, most are de-generative changes which is accelerating the arthritis in my left hip joint. I was only diagnosed with very early arthritic changes back in February ’10, where previously there was none.

I have been in severe pain for many months now, and most doctors attribute it to chronic pain. If you have read my previous blog posts and know my previous history, you know I have been through quite a lot and have had many surgeries for problems within the left hip cavity. At this point in time, and for quite a few months now, I have been unable to get out of this acute pain and its levels of 7 and above out of 10 on a basic pain scale. Before each surgery I have had, multiple scans have shown a proper cause for the pain I'm experiencing within my left hip. Once again scans have given a decent cause for the acute pain I am in. I feel like I am suffering from ‘Chronic Acute Pain’ because over the course of 4 years now, pain has subsided after surgery, and yet when something goes wrong once more, scans prove there is a cause of some sort and surgery has fixed it. Now the problem is; and this is where the chronic pain part comes in, is because of all the doctors and nurses I have seen, they have taken quite a long time to reach the point of operating, and the pain continues up to this point and becomes quite severe however always subsides afterwards. Now this is where my questions start to come in.

I have recently seen a new orthopaedic surgeon, who after consultation, and reading the results of my latest scans seems hesitant to help, in case he makes the pain worse. This is a similar situation I had with my previous surgeon.

This is a risk I am willing to take. Is he?

If you had the ability, the skill and the tools to help someone in need, would you?

How far will you let me deteriorate before intervening?

If there was the smallest possibility of changing someone’s life for the better, would you do it?

Even though I am no more qualified then the person next to me in the field of medicine and how you operate, if you see a patient in severe pain, and there is obvious arthritic changes within the structure of the joint and you know it will only continue to get worse, wouldn’t it be easier and more helpful to the patient (me) to intervene those changes now and take that risk that you may actually help that patient, even if it’s the smallest percentage, to give them a better quality of life than they had before?

I have continued to hear that my age is a problem in regard to a hip replacement, well so is my quality of life. I have none. If you can help, you may actually be able to give me back some quality, so the rest of my body doesn’t deteriorate either. I see a number of specialists for problems that have occurred from a lack of a quality of life. My body is deteriorating because I can’t do the normal things that a 24 year old might do. I am living like an elderly person, relying on almost full time care from my 60 year old mother. I am filling my body with pain controlling medicines just to get through each day, which I barely do. I am slowly losing the confidence I once had to be a teacher. I know I would make a great teacher, my prac skills have shown so. I'm intelligent, smart, funny, kind, practical and fully aware that I will never return to being the person I once was, and be able to do the things I used to do. But please…

I beg of you, please take a chance on me.

what would you like to know?

I thought I'd write an off the cuff blog asking you guys what you'd like to know about me. I'm fairly honest in my blogs, and for those who follow but don't know me, I'd love to know what you'd like to ask.
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

The pain of painkillers

I know it’s been months since I last posted anything, however I thought that I might just skip ahead of what’s happened over the last few months and discuss something that is in topic in my life now, and it’s quite a serious topic; 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 4^th time I have started the withdrawal process of coming of my pain medication, and I hope it’s to be the 4^th time, I will do so, successfully. At this moment (8^th 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 3^rd 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.

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 3^rd 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 entrée 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

Life, Goals and Expectancies.

Hi you,

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!

This teacher among with my VCE PE and health teachers are the ones who inspired me to become a teacher myself, and help other students not only change their view of Phys Ed, but also enjoy themselves and begin to have an understanding of their body even if Phys Ed is not their preferred choice of subjects. These teacher's all had special qualities which i'd love to be able to emulate in some way and I definantly want to achieve a level of teaching where I can help students enjoy their studies they way my VCE PE teacher taught to me.

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 4^th or 5^th 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 3^rd 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 4^th 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 4^th 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 2/3^rd’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 comments

friend envy

Hi,
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.

Hi you guys,
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.

I received lovely gifts, mostly gift cards, Sex and the city DVD (season 5… they had sold out when I bought the rest in 2007) and a small amount of cash. Mum is yet to choose her Christmas gift as yet, as she wants a steam mop. Making sure I keep money saved for that.
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

A complete turn around... and around

Wow, I have not posted for so long, and i feel so guilty that i have been so blogless! As well as not posting my own blogs, Ive completely abandoned everyone else's as well. I have a backlog of blogs to read, but first i will write.

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?

Woah? What on earth has happened?

Hi peoples,

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.

A few positives of my stay here however have been, I got to meet a fellow twitter friend @rellacafa, who I've shared many thoughts with and she's helped me get through some tough times in this hospital even! But Hayley was the one who inspired me to write this blog thing, and i can tell you, meeting her was definitely a highlight, and someone i know i will be friend with on and off the Internet. She was so kind, she even bought me a 'get better soon/happy birthday' gift and card!

Meet 'Brawson' - a small but inspiring bear to get through the hard times!

I was told he likes to play twister, sing karaoke and eat gingerbread!

However I've layed here for most of my 11 days so far, I'm only starting to work with the physio and psychologist and I'm not sure of how much longer ill be here for. Unfortunately i wont be able to blog again most likely, until i get home, so ill leave you with some pictures of some of the HOSPITAL food I've been getting. You can see all pics on my twitpic page but here the current ones are:

and they taste as good as they look!

As usual, feel free to comment, send me an email to jl4cummins@students.latrobe.edu.au, facebook me or message me on twitter @jencummins16.

hope to be back soon,

signing out,

Jen xo

PS you can get to Hayleys/@rellacafa's blog by clicking here

Who the F*@% am i shaving my legs for?/What do you do when your life is in the hands of another?

Hello,

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

pain free?

Hello readers once again,
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

FML

Hello readers,
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

Thoughts....Heath Ledger...

Hello again.
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

another week another doctors appointment...lets hope this one fits

Hello readers,
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. :)

lyrics...

Do you ever have one of those day's where your listening to music and feel it somehow reflects your life? well i was watching idol last night and caught some young boy singing Gnarls Barkly's Crazy and i felt thast how i feel.

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