#Utah #ZionNationalPark #hiking
Today I had a pre-op assessment prior to surgery which is in less than 3 weeks. I wasn’t surprised they wanted to see me beforehand, I’m not as straightforward as most women my age, & as I already had an appointment to have blood work done that my rheumatologist had requested it made sense to get everything done on the same day, so I did that this morning.
So I rock up at the pre-admission clinic like I was told to do when they called to book the appointment. Of course it wasn’t that simple because I hadn’t been to registration first because I’m not a mind reader. So I then go there & take ticket number 32, the number on the electronic board was 23 – great! I’d been in the building for 10 minutes & already I could tell that 1 hour worth of parking wasn’t going to be enough. As it happens I only sat there for about 15-20 minutes before my number came up. The registration process was quick as they were expecting me & had all me paperwork there. I now had a little bit more confidence in the system…
Back at the clinic I am greeted by a nurse who takes the paperwork, & weighs me (without it, thank god, it was at least one tree), & I sit down for another nurse to take over (one nurse is obviously not capable of doing the full assessment). No sooner does the new nurse start speaking when the anaesthetist walks in, so the nurse stops & allows him to take over, but she listens in so she doesn’t ask the same questions. He apparently knows my husband from a few years back so makes some small talk in between medical questions. The main reason I am being questioned is because of the medications I take – especially my biologic (the injection). One of the other drugs I am on is a non-steroidal anti-inflammatory, but a slightly different drug to the Ibruprofen or Diclofenac that many of you might know. Normally it is advised to stop taking these drugs a few days before surgery, but I take Celebrex which is a little different & therefore I do not need to stop taking it. I am relieved about this because I will have already been without my biologic for over 5 weeks by the time surgery comes around & may be starting to feel the effects. All is well with him, he’ll see me on the day & the nurse takes over for a bit, then I think I’m done…
Not likely, the nurse then sends me off to see an internal medicine physician & I question why. Apparently it’s because of my medications that I have just discussed with the doctor that is actually going to put me to sleep, shouldn’t it be all sorted? Nope, apparently not, I must see this other guy. So off I go. I extended my parking while I wait, thinking half an hour should do it. I am called in & the guy is very polite & friendly, & very concerned I am on a biologic & I’m about to have surgery. I explain the plan I have with my rheumatologist & he is confused there is no record of this plan in my chart. No there won’t be, I see him regularly, & know him well. We discussed it very recently at my last consultation; it’s all taken care of – he’s kinda the guy in charge of me. This didn’t seem to sit well with him; a doctor I’ve never clapped eyes on in my life & probably never will again wanted to devise is own plan. I eventually manage to convince him that it was under control. Then we moved onto the Celebrex that he wanted me to stop about 6 days prior to surgery… errr no, the anaesthetist said I could still take it. For the love of all that’s medical people – make your bloody minds up!!
To cut a long consultation short, he was not happy about me taking it & was going to discuss it with his colleague – that would be the doctor who is actually going to be the one managing me on the day & frankly saw no reason to stop it, & therefore the one I’m going to listen to thank you very much. Not only that, no biologic & no Celebrex for almost a week will not give me a very good start to making a recovery. I eventually escape & return to the clinic thinking I must be done now…
NOPE! I now needed bloodwork & an ECG. They had to be kidding me; I had only just had bloodwork that morning, taken from the only place that anyone seems to be able to get any out of me. Apparently they needed more. So I have a right old rant to the nurse explaining that nobody told me any of this on the phone when I booked the appointment. I had my kids to pick up from camp, which is all the way back across town. Had I known that I was going to be 2 hours I would have requested an earlier appointment. She said I should have been told all of this when the appointment was made. Great! Thanks!
So, off I go to ECG, while adding MORE time onto my parking, & texting hubby to see if he can go for the boys. I get to ECG, wait in ANOTHER waiting area, eventually go in, & lay on the bed. The technician lays a sheet over me & asks if I can up my dress – I was wearing an all in one shorts & top romper style thing. I explain it needs to come down for him to gain access to my chest, which I was more than happy to do but he seemed embarrassed about. In the end I just got on with it – I mean really – & he got the job done not knowing where to look. Honestly you would think I was lying there completely naked (yes I had a bra on there was nothing indecent about me at all). Mind you, he was only about 16 so maybe that’s why! I then go back to the clinic AGAIN, swap the ECG for the bloodwork forms & head to the lab where the phlebotomist attacks the opposite arm from the earlier bloodwork (so both arms now very sore) & pokes around for a few minutes before finally getting what she needed… Hallelujah!! I was free to go… & face sitting in traffic for another 2 hours just to get home.
I hope the surgery is going to be a bit more organized!
08.30 – YAY! A sleep in!
10.00 – Hubby & elder child have disappeared off on their shiny bikes wearing smart new lycra. Younger child & I are going to build BB8, R2D2 & C3PO – a book he bought with his pocket money at the school book fair. He had done quite a lot himself but they are just made of strong cardstock with flaps & slots to hold them in place – quite tricky for a 7 year old to do. We set up in my craft room & begin.
11.00 – We have built BB8 & put a joint of beef in the oven to roast.
12.00 – We have almost completed R2, attended to the beef & prepared the potatoes.
12.40 – R2 is finished, the potatoes are roasting & the beef is almost done.
13.00 – Hungry smelly bikers return after 33kms & elder child didn’t fall off once. They also saw some friends from school & caught the tail end of the emergency services clearing up after a hit & run. Slightly more eventful than our morning in the craft room!
13.30 – We are sitting down to a proper Sunday lunch for the first time ever – I think (we normally have this at about 5pm). Elder child declares war on the chef because she forgot to buy Yorkshire puddings!
14.30 – I abandon hubby with all the dishes to head to the hospital to have a CT scan of both my knees this time.
15.00 – I arrive bang on time. No need to get changed because my cropped pants will roll up – even better. However, in the process of doing this in front of the radiographer (a guy, of course it was a guy) I discover that I must have dropped chocolate into my lap when eating my dessert. I large blob of melted chocolate was sitting between my legs in an embarrassing spot! I scoop a bit off & lick my finger announcing that it’s definitely chocolate. He did not find this amusing. The scan takes all of 2 minutes & I’m on my way home.
16.15 – We all sit down to play Cluedo, a game the boys only just learnt yesterday at our friend’s house. Considering they are not quite tuned into listening what is being said beyond their own turn, they didn’t do too badly. There was also gin involved.
17.30 – I make 2 Spiderman cards for a birthday party younger child is attending next weekend, while the boys get bathed & pj’s on early so daddy can finish reading the Narnia book to them.
19.00 – I organise everyone’s life for school, work & the morning boot camp routine.
19.30 – I thought getting ready for bed early meant that they should be in bed by now, but hubby is still reading.
19.45 – I gently remind him of the time, & he promises he’s nearly finished. They are going to be disgusting tomorrow mark my words.
20.00 – Finally! So much for their early night before school, after having two late nights over the weekend.
20.15 – All is calm & right in the world again. It must be time for wine?
07.45 – Boys wait at the front of the house to be picked up by another mum. I have my appointment with the surgeon at 08.30 so she kindly offered to swing by & scoop them up.
08.25 – I arrive at the doctor’s office feeling quite nauseous & a little scared at what the outcome of this consultation will be.
09.25 – I leave the doctor’s office in tears. Not because there is nothing further to be done, but because I’m to have MORE imaging & a joint injection before she will contemplate putting me under the knife.
09.35 – Hubby is already late for a meeting, but we are driving past the post office & have a envelope to pick up which we know is our eldest new passport. Hubby reverses the car into someone which I feel is my fault – don’t ask long story – There is very little damage, the paintwork will polish up on the other car but the guy is being a complete tosser about the whole thing. I leave them to thrash it out & go to collect the passport.
09.50 – Drop hubby at work with his bike & leg it home because my rheumatologist is calling at 10.
10.05 – Emotional conversation with my doctor about the management of my knee, he is also suggesting that a joint injection is the only thing that hasn’t been done – there has also been some discussion about chopping of the head of my fibula off – I want to throw up at this point because this was also discussed with my surgeon. I suggest that he talks to her so they can agree on what pictures they want & if there will be any chopping at all.
10.20 – I’m in absolute tatters so I call hubby who I know is busy. He is & will call me back as soon as he can.
10.45 – I look like panda while talking to hubby. I am much calmer after coming off the phone.
11.00 – 14.30 – I write another chapter, do laundry, watch the rain fall & practice my guitar – which sounded better today.
14.35 – I leave early for school to pick up a few groceries on the way.
15.10 – I pick up my younger son & his field hockey buddy from the class next door. His mum is a teacher at the school, she gives me his hockey gear and we confirm the arrangements. This is the first night back at practice, I won’t bore you with the details but they changed the location, which has completely screwed up all our plans because the original location is at the end of our street – walking distance.
15.30 – Arrive home with hockey boys. They get changed, do homework & eat dinner in less than an hour.
16.45 – We arrive back to school, waiting for us in the parking lot is hubby, elder child, hockey buddy’s sister (who is the same grade as my eldest) & their mum, the teacher. I swop hockey boys for their siblings, hubby puts his bike on the back of our car, I had over school uniform & homework to mum and then drive back home again.
17.00 – 19.00 – I feed, water, & do homework with siblings, listen to guitar practice, wash gym kit after muddy track & field session, feed animals, & sort out lunches. Teacher mum drops off hubby & my younger son, both require defrosting – and they were wondering why I was offering to stay home and do the feeding & ferrying about part.
… & this will now be why I will also be drinking wine on a Tuesday!!
My knee kept me awake for 3 hours last night, throbbing like toothache so I was unable to find a comfortable position. I still have another week to wait before I see the surgeon & I just hope for the sake of those who have to live with me – or just pass me in the street! – that she will just go in there & have a look. I know that surgery is always the last thing any of us want, but this has been going on for 6 months now & I’m at breaking point with it. It’s getting worse again, swelling, protruding, & nagging away at me all the time.
Today was back to school after Spring break, I could see people looking at my leg to see if the brace was still there. I think many have given up asking, they see how much it’s worn me down. When they do ask I don’t have anything different to say. I hope in a week’s time I do…
It doesn’t matter how down I get about my own situation there is always something that comes along, slaps me in the face & wakes me up. Then I suddenly realize that really my own situation is not at all that bad. That happened today when my lovely cleaner announced what was troubling her. I knew there was something on her mind the moment she walked in the door. We’ve gotten to know each other quite well over the last three years & I now consider her a friend not just an employee. She is so reliable & good at what she does she now works for two of my friends. She is the hard working, salt of the earth type who would do anything for you, & on occasion I have called on her kindness. Her sadness today began last summer when her husband had a heart attack…
A hard working man & father of two boys, he was devastated when he learned he required surgery after his infarction. He recovered well but mentally struggled with not being active & going out to work. This finally returned not long ago, but both he, & my cleaner, noticed that he was more tired than usual, & his general health, & more noticeably his appetite, had deteriorated. This led to further investigations & time off work.
When she told me today what they’d found, my first thought was not of who will clean my bathrooms and muddy floors – far from it. I immediately asked her if she needed to go home, she should be with her family. But no, she needed some normality in her life because she had no idea what the future held & working kept her mind occupied; all of which I totally understood, but I only deal with chronic pain & not the prospect of my husband having a heart transplant!
My closest friend is a cardiac nurse, & another good friend who was a transplant coordinator & now also a cardiac nurse, so hopefully I can help by making sure that they get the support & information that they need. I have to confess it is something very alien to me, in all my intensive care nursing experience I never had to deal with this kind of condition. Of course, I have said that if there is anything we can do for her family all she has to do is ask. Her younger son is friendly with my boys, often spending school holidays at my house while she is working. Even if this is all I continue to do, it is something. I may be about to have surgery on my knee; she knew that before her world fell apart. She was quick to say that if there is anything she can do for me all I have to do is ask. She is the sort of person who will still go out of her way to help me even if her own life is in tatters – & she’ll be mad if I don’t ask her. How can I ever bring myself to ask for her help, my problems are NOTHING compared to hers.
When it all just gets too much a meltdown is the only way to go. No matter what is said, how it is said, or who says it, nothing will prevent the inevitable happening. No matter how strong you have been in the past, at the moment you give in you feel a failure, not only letting yourself down, but also those who love you. A person can only take so much before they are they just give up on him or herself.
Where to next? I need somebody to just take charge & tell me because I have no clue. No more scans or injections, or drugs, how difficult can it be, isn’t it time to just open it up & take a proper look. It’s been almost 6 months now – I just want it to get better!!!
How does a knee look dislocated, or out of place, & mechanically doesn’t move correctly, & yet 2 x-rays, a CT, and an MRI scan suggest it isn’t?
I’ve known for sometime time that this wasn’t going to be straight forward, my gut told me that. When the MRI suggested inflammation, a shot of intra-muscular steroids worked initially, enough that I could remove my knee brace briefly at Christmas, but it still wasn’t right. Next it was oral steroids, & finally a few weeks ago the joint was injected superficially. I have been wearing an industrial knee brace for 4 months now. I don’t like the knee to bend while being loaded (up or down stairs), especially if it also rotates (getting in or out of the car). It aches most of the time, especially after walking any distance. When I sit with my knees bent at 90 degrees, you can spot the protrusion from across the room, it is that obvious. It wakes me up at night if it’s bent for too long. It doesn’t really respond to painkillers, it prefers rest – which my life does not allow, & ice numbs it temporarily.
It has been a mystery to every professional that has examined it, until today…
The appointment to see a colleague of my own rheumatologist that was scheduled for 7 weeks time was brought forward to today. This particular physician is good at ultrasound, which sounds a bit basic when you consider all the other imaging I’ve had. It was difficult to pack my full history into a 5minute conversation, but he was able to get an idea of where I was regarding my disease. Then he put the probe right on the bony prominence that is also very tender. What he clearly saw was bone, extra bone on the head of my fibula. Nothing was out of place; there wasn’t any obvious inflammation, just unusual bone growth. Lying on top of that bone is tendon, now under tension because it’s being stretched & rubbed on bone that normally wouldn’t be there– he described it as ‘runners knee’ without the running.
He has never seen before, & clearly nobody else had so that’s why it’s been difficult to diagnose.
YAY! Finally, a diagnosis. But what about treatment?
If this was a real runners knee, rest, ice, non-steriodals etc. All the usual things you would expect for a sports injury, but this is not a real runners knee, it’s disease related. The treatment will only help with symptoms, it won’t stop the bone growing. In reality, unless my orthopaedic surgeon has any bright ideas, like shaving the extra bit off, I’m stuck with it! So, if my writing doesn’t make it into the spotlight, my unique knee will! It will be presented to other professionals, hopefully on Friday, at a radiology meeting. Maybe somebody else has seen something similar, or can suggest some other management.
I succeeded in holding back the tears until I left the room. Thankfully my husband was with me. He always tries to stay positive in this situations – one of us has to. I have always had a feeling deep down that this would go under the knife, I don’t know why, I just did. Maybe because of the way everyone looked at it, curiously worried at what they were missing. The thought of someone shaving my bone makes me feel physically sick & very emotional. I can’t begin to describe how upset I am, & overwhelmed with anger at having to deal with more pain and discomfort.
At what point is it decided that I’ve suffered enough?