Take a chance on me

Will you take a chance on me?

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

How far would you let someone deteriorate before intervening?

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

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

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

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

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

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

How far will you let me deteriorate before intervening?

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

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

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

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

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

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