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, 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
Monday, August 17, 2009
Hospital. to stay? or to go?
NOTE: this blog has one MA15+ word in it. If you are my neighbor or someone I know well, I apologize in advance. I also apologize this particular blog doesn't contain much wit. Sorry
Hi all,
I've been meaning to blog again this week, but need to get into the habit I think of updating this just as I do twitter or facebook (well not AS regularly but I assume you get my drift).
So this week in my life, my pain has worsened. As well as pain in my leg, the pain has moved into my groin [which is like a neon sign saying something is wrong], it is around where the femoral artery sits along the hip line (you know the line in between your hips and your legs) and unfortunately and MA15+ rated along the soft tissue on the left side of the vagina.
I apologize for being a bit graphic but that's just how awkward this pain is. I feel like the last two weeks have blended together due to pain medication and constant changing of ice packs and of course sleep. Welcome to the life of a pain patient.
Highlight of last week however was a day trip to uni in Bendigo to hand in an assignment and do an oral presentation. I won’t go into much details except I was heavily medicated for my part of the group presentation and I slurred my way through. FML. The real highlight was that I got to see my friends, and they made me laugh.
On the weekend I had my MRI scan. I was in the machine for over an hour, which is extremely pain full particularly as you can’t move and you are having constant leg spasms. I also found out later I was supposed to have an injection of some sort of dye, which I didn’t get. Anyway I ended up having to contact my surgeon on the weekend saying I needed hospital help. 'I'm at the end of my tether with this current pain'. [NOTE to Surgeons: never ring patients from your mobile without blocking your number. otherwise they can contact you whenever they need (luckily for me he didn't block his number)] He organized for me to be admitted into the hospital, and very quickly I received a call from admissions confirming info etc, then the nurse manager called, and we all decided that it would be best for me to come in on Monday morning [today] as then I could confirm with my health insurance that I am covered. --> Mum got a phone call this morning saying the doctor hadn’t signed ANY paperwork, had provided no information about my medications etc, and was unable to be contacted today. The nurse recommended I stay at home where I have control of my medication and that if I had come in they would not be able to give me a pain relief as the doc hadn’t signed of given any info. Fantastic. That pretty much why I was going in there in the first place. Pain control and to find out why im in so much pain!
Now i'm stuck in a confusing mindset of if I go? - I will lose control of when and what I self medicate with. If I don’t go, will I be in the same place I am in now. I find i'm always stuck with the same thought when I need to go to hospital. Whats the point of it all? Can they help?

Signing out,
Jen xo
Tuesday, August 11, 2009
Sick of it...
I'm sick of being in pain.
A quick visit to the surgeon on Thursday showed that he was not happy with my sudden increase of pain and decrease in mobility. To be honest. This scares me. i know when the pain moves into the groin, that this means trouble. I don't have time for another surgery. I took last year off uni, and i don't want to miss anymore. In the past 4 days my pain has gotten much worse. i have gone from limping to dragging my leg to relying on crutches to get around. My pain killer medication has more than doubled and after 3 surgeries and successfully withdrawing from medications, ill be looking at going through the process again. I know i cant prejudge whats wrong until i have the MRI scan on Saturday and get the results the following week, but I'm scared that if they find something, i will have to have ANOTHER operation, and if they don't find anything - why am I in so much pain and why do i have so many physical symptoms?
I'm sick of the pain, the routines, the vague memory, the forgetfulness and not being able to do anything productive. I'm sick of going through this whole process for a 4th time. what did I do to deserve this?
signing out,
Jen
Welcome to blog spot....
You see to understand what i will proberly blog about, you'd have to know a little bit about me:
- Im a 22 year old student.
- I spend half of my week in the country, and the other half back in melbourne.
- I started uni in 2006, yet in 2009 i am a first year physical and health education student.
- I am vain enough that i wont wear the same thing twice with the same group of people when i go out.
- I love my friends.
- I love taking photos when im out, and i like the fact that i seem to have a photogenic face.
- I love exercise but cant often do it.
- I dont like beer, cake, donuts or chocolate.
- I have a weekness for anything made by wonka confectionary.
- I am blonde and blue eyed.
- My life revolves around my hip.
- The last 3 years have been the hardest time of my life and it often feels like it will never end.
- My dad passed away from cancer on the same day as my first hip operation.
Now to explain what i will mostly be blogging about. My hip. You see, i had an accident while on a uni outdoor ed camp and i dislocated my right knee, and somehow shove my left femur (leg bone) into my pelvis. Now although i didn't break any bones, i managed to successfully ruin my life from then on... To create a very long story into a short one, this hip injury was very difficult to diagnose, and after almost a month in hospital being poked and prodded, the doctors decided that i had ripped the labrum (hip cartilage) in half. This then sent me to have a private surgeon perform an operation where he put two pins and 6 titanium tacks in my hip joint. To shorten this story even further, in under 2 years I've had 3 surgery's in total on my left hip, for a second tear and boney growth within the joint/build up of scar tissue and now I suffer chronic pain.
Thats me and hopefully it will give you a basis of why i am about to start blogging about whats happening now. I think it may help me get out the frustration of pain, and doctors etc.
thats my first post and not my last.
signing out,
Jen







