Nauseous!

Today is not a good day. It’s my I feel sorry for myself day. Having surgery has triggered my MS to flare up. My left leg feels like someone has whacked it and since it is the one carrying the load it’s making moving around pretty hard. My hip also hurts and I’m not sure if the bursa that I had a steroid injection in is not happy or it’s an MS thing. 

I have to take the oxycodone to cope with the pain at the moment but it’s making me nauseous. It’s easy to say nausea is better than pain but when you’re not feeling the pain but you’re definitely feeling the nausea it’s hard to remember that. I’ve been using crutches to go to go to the bathroom because it’s easier than having to put on the knee crutch, walk to the bathroom, take the knee crutch off, manoeuvre to the toilet, try to get up off the toilet with no rails, get the knee crutch back on, make it back to my bed and take it off again. They are fine to go down stairs but I still can’t get my head around the getting up the stairs - getting my good foot up to the next step while balancing on the crutches. Crawling up the stairs seems easier until you reach the top and have to get from the floor to standing. 

I had a wobble last night and nearly landed on my foot but fortunately broke my fall with my head against the corner of the wall. I think the problem resulted from leaning back too far on my crutches. There’s upright and then there’s oh shit.  I’m hoping at two weeks I’ll get a cast because moon boot and bandages feels so vulnerable. Plus my toes are really screaming with nerve pain. Hopefully the gabapentin will hit that on the head. I ended up opening up my moonboot and putting an ice pack under my toes last night to get some relief. 

Having missed the physio has left me a little on the back foot (ha ha). I’m having to use dr google a lot to check to see what I should be doing. Elevation seems to be a big thing. I’ve got a pillow in the bed and so far it has stayed where it is supposed to and not ended up on the floor.

I’m still quite woozy and ready to fall asleep without warning. No good when you’re trying to drink a cup of hot tea. I’ve come to just in time to see the cup just about tipped sideways enough to pour tea all over my abdomen. A burn is just what I don’t need right now.

I really need to be more vocal about my MS making it more important to stay in hospital a bit longer. I’m always tossed out before the little old ladies who’ve had the same surgery. I think they focus on my age and forget that my brain is Swiss cheese. I’m also technically home alone, my sons are here but they are hard to get hold off when I need them. My husband had a running event on an island so camped over there. At least it meant I could wake up during the night and not have to worry about disturbing him.

Hopefully my nausea will settle and I’ll get a better hand on moving around and then I can settle down and read or watch Netflix. Nausea makes doing that harder. It is very preoccupying. Especially the possibility of having to get from my bed to the bathroom quickly. That’s just a recipe for a whole bunch of nope.

The deed is done

Yesterday was surgery day. I went in at 11:15 to find out I wasn’t on the day list because someone ballsed up and put me down for the day before! It was all sorted out in the end  and I made it to the admissions ward. It was a bit of a rush there because I’d been so long in reception but everything got completed.

I walked to theatre admissions next. The surgeon came and marked my leg and discussed the surgery including where she’d take a bit of bone to graft if necessary. It was the top of my tibia and the first place I looked after surgery was there. No dressing so no graft, yay.

Then the anaesthetist came and discussed my anaesthesia. He decided since I had MS a general was the best option. Funny how it differs from doctor to doctor! I told him I needed to avoid overheating so he promised they wouldn’t put the heat blanket on on top heat.

Once they were sorted I was walked into the theatre. It was freezing! The operation table was so narrow but they had arm rests so it wasn’t too bad. The anaesthetist said he was going to put a cannula in my hand and I thought “you’re welcome to try.” He obviously looked at the veins and decided that my one drain pipe vein in my left elbow was a far better idea. The last thing I remember was him saying he was giving me a relaxant and looking around at the theatre noting I did feel relaxed.

I woke up in the recovery room in full MS blow out. My legs were spasming like crazy and my teeth were chattering. I had the usual fight about it being a normal side effect of a GA and the nurse wanting to warm me up and me saying if she did I’d get worse. We worked out a compromise. 

I had local in the site in theatre but when it wore off it was very painful. They kept topping up my morphine but it was still sitting at a five (someone has hit me very hard with a hammer). The anaesthetist was called and he ordered oxycodone. I was warned it would make me drowsy and it did but it hit the pain beautifully. I don’t remember anything more in re overly,I just magically appeared in my room.

I had a pump on my left leg to help prevent blood clots. Every three minutes it would feel like someone had grabbed my ankle. I also had my moon boot on! I thought they were a bit confused taking it to theatre with me but no, they were right. When I had the calcaneal osteotomy I had a soft cast but this time it’s just bandaged so the moon boot forms the support.

Pump on the left and moonboot on the right.

It’s really weird trying to sleep with a moonboot on. I was a bit drowsy but watched some tv and waited for dinner since I hadn’t eaten since 6:45pm the previous day. They have fabulous food at Mercy but not after a GA. After a GA you get a light meal. It wasn’t bad at all and if I hadn’t seen the full menu today I’d have never been the wiser. Dinner was good but breakfast was cold toast and porridge with stewed apple and apple juice. Since I’m allergic to eggs I couldn’t have the hot breakfast which was scrambled or poached eggs. On the full menu the cooked breakfast included delicious offerings such as French toast with bacon, banana and maple syrup as well as the cold toast and cereal. I had the chicken salad for my main meal with pumpkin soup and the entree and creme brûlée for dessert.

Delicious salad but not the best for someone with an egg allergy!

I struggled a bit with pain during the night but tramadol and paracetamol seemed to ease it. I was really tired but the foot pump kept waking me up when I drifted off. I had a book and I found reading a paragraph or so sent me off to sleep. That worked until 4:15am. From then on I was wide awake and unable to even snooze.Fortunately the night nurses were characters and entertained me. They also gave me another oxycodone when I said it felt like someone hit my foot with a hammer. One of them joked that it was a baseball bat. We decided the other night nurse had done it and hidden the weapon. 🤪

I was being closely monitored and once they got over the fact that 100/50 is a normal if even slightly high blood pressure reading for me they settled down. The real concern was my oxygen saturation’s. I was sitting at 93% so I spent a fair bit of time with first the mask and then the nasal prongs delivering delicious oxygen.

I was released just under 24 hours after I arrived. I had the surgeon and anaesthetist visit but didn’t see a physio so I’m struggling to go upstairs if I’m using crutches. The I-walk is no problem but it’s a bit difficult to put on in a hurry. I remember good leg goes to heaven but I’m not sure how everything else fits in. When I went down to do something in the kitchen then I ended up crawling back up the stairs. Not the best when our house is accessed 

So that’s about it for now. Once I get a clear head and stop sleep typing I’ll do another entry.

Practising with my knee crutch

I’ve got my Knee crutch out of storage. I lent it to a friend who was a bit shorter than me, had a cast on her left leg and didn’t have knock knees like me. So I had to readjust it completely. I rewatched the videos to get me re-clued in again.

It’s set up perfectly and I’ve been round and round the house and up and down stairs, including carrying a cup of tea. I just have to buy my parrot, striped shirt and eye patch and I’m set!

I’m being fused!

Orthopod appointment lined up!

I was really surprised to get an email offering me an appointment in 11 days! Perfect! I work odd hours and six days on three days off so getting an appointment on a day off was almost a miracle!

I have been wondering whether a steroid injection would bring some relief? I have had one before in the same area. So painful compared to the ones just into tendon and muscle. It felt like someone was shoving a red hot screwdriver in between the bones. If it works then I can pull up my big girl pants and have one but I know it would only be temporary.

The surgeon is very forthright so I’m going to have to keep my head clear and not be bulldozed into doing something I don’t want. Hopefully I can take a support person with me.

I’ve made it 4 years, 7 months and 4 days.

I’ve made it over four and a half years post calcaneal osteotomy. Four years were pain free but the arthritis started to win the battle. I’ve tried to brave it out because I don’t want to give up my ability to run. I was told when I had it performed that eventually I would need an ankle fusion.

I’m at that point, in fact way past that point but I don’t want to go down that track. For me the pros are far out weighed by the cons.

Ankle fusion or arthrodesis involves cleaning up the ankle joint and fusing the bones together with screws, plates and bone grafts. Sounds easy enough?

New York Marathon 2018

• Well, it means limited range of movement - I have two flash hip joint prosthesises so I can run so they’d be wasted.
• It can change how you walk which can lead to, you guessed painful arthritis in other parts of your ankles, knees and feet! 
• Recovery can involve 10-12 weeks in a cast. Mines my right side and we drive on the left hand side of the road so my right foot is responsible for the foot controls. Therefore no driving. I work odd hours and can’t take public transport so no work or pay for 3 months.

This is the only likely option if I use our public health system, as I did with the original surgery.

My surgeon also works in private so that gives me more options. She does ankle replacements. 

• It has a shorter recovery period - 3-6 weeks in a cast.
• You regain a wider range of motion. Apparently most people return to active lifestyles but that would depend on your definition of active lifestyle.
• Return to impact sport is rarely possible.
• Need to have little or no ankle deformity - who knows if the CO has made it so!

So this is better than fusion but still unlikely to let me run unless the surgeon is brave. I’m waiting to get an appointment. If I went down this road I’d want a mobile bearing replacement rather than fixed. I don’t even know if that’s an option in New Zealand.

So what do I want? At the moment, a sharp knife and a ton of local anathestic! It is the most pain I have experienced in my life and I have experienced some high level pain. I also have a very high pain tolerance level. Right now nothing even reduces the pain to tolerable. I am taking Naproxen, paracetamol and lots of tramadol and it’s like I’m eating lollies. I can barely walk. The lowest levels of pain occur when I’m wearing the steel cap boots I have to wear to work because it’s really rigid support. Still painful but at least I can carry out my job.

It is actually something I am considering (not the DIY method!) but seeing where non-traumatic amputation for severe osteoporosis-arthritis falls on the scheme of things. I have friends who are amputees so I know all about stump issues and prosthesis fittings being hit and miss but the pain is really driving me mad and not being able to run after all I’ve been through to guarantee I can continue to run after two hip replacements is making me want to scream “Chop it off and just shove a blade on it!” Plus there’s the whole leg length issue. I was lopsided when I only had one hip replacement and that caused back and hip pain until I was straightened out with the second one. I don’t want to go down that path again.

So I wait to see when I get an appointment - how much longer I have to suffer in pain. Then I will ask for ALL the possible options and see where that leaves me.

Spoiler alert: I made it!

After the removal of my screws I had no more heal pain. Hallelujah! Recovery was nice and reasonably quick. I just had to wait for my MRI to determine what was causing my ankle to forget how to ankle. I had an appointment set up and was hoping I'd have the results before New York.

The MRI was a piece of cake since it was only my foot and I'm used to being put in head first. I had an appointment for my review with the surgeon and things were chugging along. Then the clinic nurse rang to tell me I was booked in on a day my surgeon was away - they would have to reschedule. "Fine." I said "But I'm away 29th of October until 13th of November." This was noted and I was assured I'd be seen before then.

I kept on running and training for New York and waiting for my appointment letter. It arrived in mid-October and was set for ......November 3! I had to ring up and explain again that I was away then and I'd need rescheduling. An appointment would be sent out to me.

Finally October 29th arrived but no appointment. We flew out of New Zealand on a 19 hour flight to LA and then flew 6 hours to New York. We arrived very tired but managed to get out and check out Times Square.

The next few days were filled with preparations. We fought the crowds at the Expo and looked around New York in a relatively sedate manner.

Finally November 1st came around. We were on the buses to the start at 5:30am. Disabled athletes get checked by security before boarding the buses and then get driven right into the village - a very relaxing way to start. We had a tent to wait in and bagels to chomp on. The time to start came around surprisingly fast.

We started behind the elite women but in a different wave. Our little pack ran off filled with joy and a little trepidation (a lot on my part.). The course is relatively flat apart from the five bridges and a nasty hill up Fifth Avenue to Central Park and continuing up to the finish line. The number of people lining the streets was amazing. There was not one spot not filled. I had taken a tramadol when I woke
up because all the walking around had twinged my left hip and my ankle was twinging as well. This kept me going until halfway through when I had to take another one. My ankle seemed to have decided to ankle and we kept to my plan of running four minutes, walking one and always walking up hills and running down them.

And we finished! It was incredible. The best marathon ever.


We then had a great time visiting New York, San Francisco and Las Vegas, where I shopped up a storm at the outlet malls.

When we arrived back there was a letter with an appointment in two weeks time. I was hoping it was good news.

The MRI revealed possible osteoarthritis where the bones had rubbed. I was prescribed a steroid injection to determine if that was the case. If it worked we would know we had the right place and cause. I also got custom made orthotics made. They are really great - I don't even notice them which is a huge improvement on the previous ones which were off-the-shelf with bits of foam glued on.

The steroid injection was not fun. I had a registrar do it and he had two supervisors so must have been pretty new. It took a long time but he got the needle in perfectly. It's now been three weeks and I'm still pain free so that is fantastic. Previous experience with steroid injections have been very disappointing.