What I Have Been Up To This Winter....

Unfortunately life has got in the road again of keeping this blog as up to date as I wanted! We are in August already & spring's not far away - which I am really looking forward to as it't not been the best winter.

In May I caught the flu which turned into a throat infection & took 6 weeks to feel 100% again, then a couple of weeks ago I had a slightly scratchy throat one night & woke up the next day with golfball sized glands, headache & body aches. Spent the next couple of days in bed & glads started to go down however my upper back started to get insanely painful & felt short of breath - I am familiar with bone/muscle/nerve pain but this pain wasn't like any of those. Lasted a day with this new pain before getting to see my doctor; turned out I had quite a high fever & was diagnosed with Pleurisy - complication of which ever flu strain I had to start with.

Because I'm a visual person here is a diagram for those who are interested;

Pleurisy - Pleurisy (PLUR-ih-se) is inflammation of the pleura. The pleura is a membrane that consists of two large, thin layers of tissue. One layer wraps around the outside of your lungs. The other layer lines the inside of your chest cavity.

Between the layers of the pleura is a very thin space called the pleural space. Normally this space is filled with a small amount of fluid—about 4 teaspoons full. The fluid helps the two layers of the pleura glide smoothly past each other as you breathe in and out.

Pleurisy occurs if the two layers of the pleura become irritated and inflamed. Because the layers have little space between them, they rub against each other every time you breathe in.  Pleurisy can be an incredibly painful condition.

Painwise it feels like someone has sprinkled your lungs with salt - started rubbing them with sandpaper & then decided to bind each lung to restrict it's movement. On the bad days the lung pain was worse than the hip pain I had recovering from OPEN HIP SURGERY!  It was made worse by the fact I was only able to breath around 10% of normal & unlike muscle pain there was no position that could take the pressure off my lungs.

On my first visit to the doctor he gave me antibiotics to take care of any infection & advised strong pain relief - luckily I still have a selection of pain killers from the hip op's, rest etc etc. After about the third day on the antibiotics the fever had gone & back pain had eased however the next day the pain started to increase again. I stuck with it until the last day of the antibiotics when the pain had reached a new high and went back to see the doctor. He advised anti-inflammatories was the next option to reduce the inflammation in the lungs.

Unfortunately because of stomach issues I can't take NSAID's so the only option was to try -

 Prednisone is a synthetic corticosteroid drug that is particularly effective as animmunosuppressant, and affects virtually all of the immune system. It is used to treat certain inflammatory diseases and (at higher doses) cancers, but has significant adverse effects. It is usually taken orally but can be delivered by intramuscular injection or intravenous injection. It has a mainly glucocorticoid effect.

I wanted to aviod taking Prednisone at all costs however there was no other option. When I was a teenager I was on Prednisone twice during a 6 year period for over 6 months a time. Then I was not aware of the severe side effects (good old doctors!) & developed low bone density - which has stayed with me. I also suffered many other of the side effects but thankfully these went away once treatment stopped. My doctor assured me the risk of side effect for the 7 day dose would be minimal (I did check on the net when I got home & may still experience mild ones but should not be too bad.).

So the Thursday that has just gone was my first day on the Prednisone doseage of 40mg once a day. Surprisingly  Thursday & Friday were my worst days - I was completely shattered, had taken the max in pain medication that was safe, suffering lack of sleep, not getting enough oxygen etc etc. Thankfully yesterday (Saturday) the pain had eased slightly & i managed to get up late in the afternoon. Felt even better by around 10pm & managed to have a semi good nights sleep (apart from intense aching pelvis - which is one of the Prednisone side effects!) Woke up this morning quite groggy & lung pain has started to creep up again ugh. I think this is doing to be an up & down recovery & with the research I have done it can take a good couple of months to recover.

Quite frustrating as currently with my hip recovery we had just started the second 12 week gym conditioning program that ACC have approved & only got 2 weeks into it before getting sick. Luckily we don't have to do it in 12 straight weeks but to get the best benefit I would like to do the full block with no breaks. 

Overall this winter has been pretty shocking for bugs - sooo looking forward to the warmer days of Spring. Though today Spring seams a very long way away as there has been heavy rain overnight causing flooding - under the house is very wet & snow down to low levels. Temp outside "feels like" 2oC due to the windchill.  I think bed is a good place to be today - cats think so & both are using me as a source of warmth lol.

That was a bit more of a ramble than I intended on the sickness front but hey its a start to get back into the blog :) May post later - keep warm!

Meralgia Paresthetica - (The Reason My "Good Hip" Keeps Going Numb!)

For quite a while now my right hip (non operated side) has been getting more painful because of the strain it has been under taking the weight off my operated leg.

I have been unable to lie on my left side for over 3 years the only comfortable ways to lie in bed are either on my back or on my right side. This plus the fact my right side was working harder led to my right bursa over the Greater Trochanter becoming inflamed = Meralgia Paresthetica:

Meralgia paresthetica is a condition characterized by tingling, numbness and burning pain in the outer part of your thigh. The condition is caused by compression of the lateral femoral cutaneous nerve, which supplies sensation to your upper leg.

As you can see from the diagram it is most common for the nerve to become compressed & cause problems where it intersects the Inguinal Ligament on the edge of the pelvis. However my physio thinks that because of the inflamed Greater Trochanter Bursa that the nerve where it branches off and runs over this area is being compressed because of the inflammation.

The effected area is the same for me as in the diagram & If I lie on that side for no more than 3-4 minutes the whole area goes completely numb. When I roll onto my back it takes over 5 minutes for the feeling to come back & it's normally quite sore afterwards. 

Fingers cross once my operated/injured side becomes stronger the right side will not have to work so hard & we are hoping the inflammation will settle down & in turn so will this nerve issue. It is not going to happen quickly so I will just have to be patient!  Worse thing for me is I hate anything that goes numb - hate getting pins & needles, I think I would actually prefer if it was just sore!

This past week has been pretty intensive with more advanced physio & Pilates exercises which has stirred things up, hopefully this week things will settle down again. 

Fitness Time

So at least in the aftermath of the horrific CPA the ball is rolling on getting me into physio again & moving all those muscles!

We are currently into week three of the 12 Week “ Return To independence/Work” program which ACC funds. This involves;

Pilates classes weekly on Wednesdays
Strengthening & Cardio Work 3-4 times a weeks @ Physio
Power walks – 2-3 times a week

At the 6 week mark we start work at an acutal gym & this goes for a further 6 weeks after the ACC program finishes (provided I don't need further work done).

To help keep my motivation up as there are going to be a lot of hard/sore days in the first few weeks I have found a computer program online which you can enter your measurements & track them at the frequency you set to see you progress in loosing or gaining cm's. (Much better than just relying on weighing yourself as muscle weighs more that fat so if you gain muscle it my increase the numbers on the scale which is just not a good way to motivate!

Since we started I have managed to gain 2.5cm in new muscle on my wasted thigh – which I was pretty impressed with (and it's not making the hip swelling stand out so much which is a bonus!). Have lost 2cm around my hips, 1.5cm off my left side's forearm & bicep & for the right side 1cm each.

Plus side to exercising again after so long & 3 operations is I have been sleeping better – even if I am sore I manage to nod off quicker & do not seem to wake as often during the night.

I am also feeling more balanced – I definitely would recommend Pilates to everyone, it is an intense workout for your core muscles & because you are controlling movements with your ab/tummy muscles the hip area doesn't get sore at all. The only issue I have is being unable to lie on either of my sides (even on super soft mats) so for this I use a band around my knees while lying on my back & I do single & double knee dropouts while the others are doing the side exercises.

WALKING

There are quite a few nice walks in the Timaru area & a good friend has become my fitness buddy – which helps a lot with keeping you motivated. On the local council website is a list of the walks in the area & they have a map with info for each walk. We are slowly making our way through the list working up to the hardest walk in the Scenic which should take around 1.5-2 hours. Most of the walks we have done range from 40mins – 1hr 20mins & have varied terrain which gives a good overall workout. Here are a couple of examples;

PILATES

We start with a warmup & stretches then work our way through the exercises & with each class we are learning more each time.

Feels so good to be exercising again!

Hip Update Part 3 - 6 Months Post Screw Removal & 14 Months Post Open FAI Surgery.

After that mammoth last post I will keep this last part as short & sweet as I can!

Here is what's happened after the horrid CPMA:

- My old physio who I had from before my hip injury & who worked on it when it happened got back to NZ from Oz (her & her partner moved to Oz for work but are now back!) Which was the first great thing. She is the best physio (10yrs) I have come across here & I have had a few! When I found out she was back I made an appt to see her & got in that week.

- Physio agreed that I needed a solid physio program with manipulation & acupuncture to kick things off & was horrified at the way I was treated at the CPMA, but had heard similar stories from others.

- Had the long overdue appt with my specialist, went over what had happened after the screw removal (I think this was the longest appt yet - almost 15mins!!) Didn't want to look at the hip or check movement. Said that there was nothing right now he could do in regards to operating & agreed that I needed a good PT program. He dictated a letter to ACC advising this & if after the PT & manipulation I was still in the same amount of pain only then would we go back to the CPMA.

- Big weight off my shoulders now that I am being backed for the PT. Though I still would like an x-ray as none were taken after the screw removal. I think it would also be interesting for a MRA as waaaaay back in the begining of this injury I had a MRI - which did show some tears but they are just not as sensitive at picking up tears & abnormalities like the MRA's are (MRA is a MRI with contract dye injected into the scanned area.).

- Next good thing was I got a new ACC case manager & she is 100 times better than the last. She asked who recommended I have the CPMA - I replied my old case manager she couldn't understand why she sent me there! Where was this case manager weeks ago??? She agreed that I did not need to manage my current pain but that I needed to have a decent go at a PT program & get proper results.

- Finally things are in motion. Currently 2 weeks into 12 Week "Return To Independance Program" which is pretty much 12 weeks of intense physio/gym work/stretching etc. YAY.

- Specialist does want to see me when we are around 8 weeks into the program just to see how things are progressing.

Much happier now - end of hip update & Rehab Program next!

Hip Update Part 2 - 6 Months Post Screw Removal & 14 Months Post Open FAI Surgery.

 Here is part 2 on the hip front update:

So my case manager got in contact with me at the start of February to see how things were going. I advised the lack of contact from my specialist after the last operation, that no rehab programs had been started & that I was experiencing some new aggravations.

She decided I should go to Christchurch for a Comprehensive Pain Management Assessment (CPA from now on!) to get a better insight & fresh eyes. I was keen to go as at that stage I was just wanting someone to set me on the right recovery path after the screw removal.

I must stress now that I know people who have had CPMA's for different disorders and it has helped them greatly & gave them many skills to manage their constant pain. However my experience was far from that or anything I think I assumed it was going to be like.

I had an appointment within a week of talking to my case manager for a Monday morning. I stayed Sunday night with one of my lovely hipster friends & was up at 6.30am getting myself awake and getting the hip moving (normally a late riser as sleeping is not that flash). My appointment was for 8.30am & I arrived at 8am due to paperwork & just wanting to be on time! No one was actually in the office till 8.30am anyway so I prepared my notes & made friends with the resident kitty called Jack - who apparently adopted the Pain Management Centre around 3 years ago and decided to stay!

I knew it was going to be a big day & quite tiring but I was not prepared for how it actually went.

- First assessment was Physiological 1 hour & went through all aspects of my life & how the pain interacts with it. Was not bad as had previously had an assessment done just prior to my screw removal as part of a Work Ready program through ACC & the outcome was I had many coping strategies for the pain & was functioning well and there was no need for any further physiological assessments/treatments.

- Second assessment was Physical by a physio - (here I was a little tired & this is also where it started to go downhill for me.)  I was asked numerous questions regarding my hip & what I thought the limitations were & what I thought needed doing. My main answers were;

I need to start a physio program since after the last surgery nothing had been done - no massage/needles/physio - nothing. Plus throughout the whole saga I have never been able to complete a decent physio program to see results as an operation has always stopped progress.

And that I needed hands-on massage or needles to assist in releasing the deep muscles which after over 4 years were in pretty bad shape!

However I was met with comments like " I need to stop looking for a cure & I need to start focusing on managing my pain so I can get on with life."

To this I stated that the pain level that I am in is able to be reduced with a proper rehab program & I am not going to sit back and say I have to manage it as it is because I know there is still a lot that can be done - maybe not surgically but with physio/massage. Also I am not holding back my life to find a cure, I am trying to get the best possible outcome for this situation.

The questions got more intense & I felt every answer was the wrong one or it was being taken the wrong way - like my crutches. I took one up to Christchurch with me as I new it was going to be quite taxing on the hip, with travelling & getting poked plus the sitting for so long. So I took it "Just In Case". However this was seen as I was relying on it & it would be best to incorporate weaning myself off the crutch. I even stated that I do not normally use the crutch & it's only in taxing situations I would take it along just in case. But this was never written down nor was it acknowledged.

Anyway just over an hour for that assessment then came the last - the Medical Assessment;
The doctor I was supposed to be seeing was assessing another CPMA person so I saw his registrar instead.
She was quite brisk & blunt & by this time I was quite sore, very tired & my mind was boggled from all the Q&A's.  Right off the bat I got a bad feeling & proceeded to be grilled on my medical history, medications & how they interacted with me. I have never been a big pill taker with my hip troubles as I have stomach issues which are upset with large doses plus the fact that I don't like putting a whole lot of chemicals into my body either. I was grilled on my stomach issues - which she has incorrect information & when I tried to correct her I am quite sure she didn't believe me anyway. When I stated how some pain killers interacted with I was told bluntly "Well that just wouldn't do that."  I was pretty much put through the ringer & felt so exhausted and drained I burst into tears. To this she said did I have a habit of crying & not being able to stop? I replied no i did not however when you have been grilled for a morning, are tired, sore and feel like no one is listening to you it's a little hard not to bloody cry!

The Medical part ended not long after that & I was sent to the waiting room while all three assessors got together to compare notes - they would come and get me when they had their findings. I had to wait around 45mins & for a Pain Management Centre their waiting room chairs were bloody uncomfortable. This didn't help me to cheer up either!

After the wait I was asked to come into the main room & sit at a table across from the assessors to hear their findings. Their thoughts were;

- I am a strong woman who has good coping mechanisms though when pushed shows it is hard sometimes
- I need further work on my coping mechanisms
- I need to stop focusing on getting physio treatment and need to manage my pain
- Recommended that I come up to Christchurch for a 3 Week CPM Program & stay in their hostel & each day do certain parts of the program.

To this I promply burst into tears again - after having the morning from hell I was being told that they wanted me to leave my family & friends for 3 weeks to complete a program that I new I didn't need! At this stage I just started nodding, not saying a lot so we could get to the end of the assessment. I was given booklets & info sheets & sent on my way.

I came out of it feeling like I was doing it all wrong, I felt depressed & I dreaded being sent away for 3 weeks! Throughout this injury and all the operations I have always been strong, positive and developed good coping skills if I was having a bad day. Though when I left the CPMA I felt like an empty shell.

When I got back home it took me around 3 days to shake the dark feeling that I had from the assessment & I got a burst of my usual can-do attitude back again. I emailed & left urgent messages for with my specialists receptionist stating I was extremely unhappy with the lack of contact & also where the CPMA was heading. I advised that I did not mind if there was nothing surgical he could do for me but that I needed him to confirm my rehab program & where it should go. After a couple of days I amazingly had an appointment for the next week! Continued in Part 3 :)

Hip Update Part 1 - 6 Months Post Screw Removal & 14 Months Post Open FAI Surgery.

Since the screws were removed from my hip just on 6mths ago (though it doesn't feel that long ago!) it has not been an easy recovery as we were expecting. (Though by now I should know anything to do with hips is just not straight forward!)

The screws which were a byproduct from the Open Surgical Dislocation surgery for FAI were thought to be causing irritation & pain in the hip so the best option would be to remove them and it would settle & recover as expected. Also during the surgery a steroid injection was administered to my other hip's Greater Trochanteric Bursa as due to the added strain the leg/hip was under this was now up there with the pain on my operated side & I was only able to lie on my 'Good Side' for around 5 minutes till it went numb/became quite painful.

The recovery was more painful than I was prepared for and it took a number of weeks to be able to fully weight bear on that leg again. The incision was directly through the large scar from the open surgery & was approx 4cm long - I don't think the muscles liked this at all! The incision did heal on the surface quite quickly which was one good thing.

I was unable to go to my post op checkup due to a bad bout of the flu & when it was time to make another appointment it was coming up to Christmas & was not able to get a reply to email's or phone messages so December & January was still without any feedback or rehab programs starting.

At the beginning of February my case manager called for a catchup - continued in Part 2!

Change In URL

Hey everyone - this is a mini post to advise I am changing the URL for this blog

to www.icandynz.blogspot.com & will still focus on my Hip issues but also incorporate

my Photography & recent Eco drive!!

So lots to catch up on & lots coming up :)

Hugs to all xox

Nic