Day’s… Week’s… Months

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

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




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

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

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

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

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

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

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