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

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

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. :)

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

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