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

Wow thank you

Hello friend,

Just a quick post to say I'm so overwhelmed with everyone's generosity and thoughtfulness.

I never expected the amount of emails, facebook mail, text message's and twitter replies, that i have received from friends that i have spoken to recently, friends I haven't seen in ages and new and unknown friends since I posted last.

I just want to say a big Thank you! to you all.

It really lifts me up when things like this get so shitty and depressing. All your comments and thoughts have been taken and stored away for another rainy day! But don't get me wrong I'd love to have more! ha ha your all beautiful people for what you say.

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 doesn'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.

I see my surgeon on Monday and another doctor on Friday. hopefully ill have more info by Monday afternoon. all I know so far is that the MRI I had, wasn't exactly what the doctor had ordered (I was supposed to be injected with something but wasn't), but it didn't show anything obvious, which is unfortunate but somehow expected. I know that to clear my mind and prove that its neuropathic not mechanical, I would need a fluoroscope MRI where the inject stuff directly into the hip joint. each time Ive had one its shown the problem. The only issue with this is that it is EXTREMELY painful, but has the answers. You see I know the surgeon is going to refer me onto someone else, but in the end I have always gone back to him, he's done this special MRI and its proven what Ive been telling them the whole time. Lets just wait and see.

'I hope to one day be able to see the whole tree on the other side'

Signing out,

Jen xx

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.

(my bedside table as current, no 22 year old should have to live like this.)

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

Benji

Here is a few pictures of my one absolute love. someone who makes me laugh everyday, knows when im down, and loves a cuddle.

I posted these mostley for my benefit, but you have to agree he's gorgeous.

PS: i think he give's Josh Thomas's 'John" a run for his money.

Signing out,

Jen xo

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

Sick of it...

A short blog tonight...
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....

After reading other peoples blogs, i decided that maybe this may be the best way for me to write about my thoughts and expiriences that happen in the coming months.
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