Just keep swimming!

To express how I'm feeling I'll quote a line from the movie "Finding Nemo: - 'Just keep swimming, just keep swimming' Thought that was better than trying to speak whale! I had my first procedure on Thursday it was a Cordral block which Dr Ashish is now doing at this hospital. I had this procedure on my first visit and it was extremely painful, lets just say I wasn't going into theatre with out a local anaesthetic and Dr Ashish agreed - phew! It really is just a glamorous procedure (she says tongue in cheek!) I lay on my tummy with a pillow under my pelvis, bum in the air slightly and Dr Ashish injects the stem cells into the base of your spine, all I needed was an apple in my mouth and I could have been a Christmas pig!! No pain this time and the theatre staff transferred me onto a bed in a room on the 3rd floor, 2 bricks under the feet of the bed to raise it up and I lay there for 4 hours, with Sabine right next to me, on top of me, feeding me tea through a straw and biscuits too, she was very attentive and caring. I've added the picture. I felt fine the next day so lets just see what the cells can do for me.

Sabine started her first day at an International British school on Thursday, she did 3 hours then Friday she attended 10 - 3.30 and absolutely loves it. I was bit apprehensive but she kept nagging me and so I let her go and it was well worth it. Shes doing all her homework and learning Hindi then in the afternoon she participates in craft classes, so shes back there again tomorrow (Monday)

I had another IV yesterday and had a high temperature (100.5) and aching body, I really hate that feeling but I know in a few hours it passes, so Sabine curled up in bed with me ate popcorn and watched a movie. I had a big cry Saturday night (once sabine was asleep) my body felt really tired after the IV, tired, sore, angry, sad....so what else to do but just take a minute to feel the emotions and then move on from it, trying to welcome the new stem cells into my body so they have the best environment to grow.

I was feeling better today so we went to City Walk to have lunch at Spaghetti's and do some shopping.

Tomorrow it all starts again and I will be having another procedure they will inject into the Brachial Plexis, I had to google it as I had no idea! Its something to do with the shoulder, as you can see I'm still not quite clear but I'll know more tomorrow. Tonight the nurse will inject into the palm of each hand (you know that fleshy bit near the thumb) hopefully that will help my hands. Actually the other day the nurse came in the morning with 2 injections and asked where did I want them? I don't usually get a choice so I was excited and confused, so many muscles so little time!! Decided to go for the Dorsiflex Muscle, its the muscle that brings the foot up when you step so you don't trip over your toes, which I have to wear ankle foot orthotics to prevent this. I've never had this muscle injected so lets see what will happen - we can only try :-)

Another day in paradise ;-)

Sabine and I at the Taj Mahal

It was a long day but it was worth it to see the look on Sabines face. Who better to see The Taj Mahal with, a monument to Love, than my beautiful daughter (and my mum too)

Ok, enough of the mushy stuff! Every morning I've been receiving injections in both shoulders and on Sunday I had an injection in the palm of my hand, near the padded bit of the thumb (if that makes sense!) which was rather an unpleasant feeling but lets hope it helps. Dr Ashish injected my face yesterday this time about 1cm above the corner of my lips (each side) hopefully this will make my smile a bit straighter. On my first trip I met a guy from Perth, Matt and his mum Marilyn and he is here at the moment for his 3rd round of treatment. Marilyn mentioned to me that she noticed my face had changed, it looks different, so thats good.

I've been working with the OT each morning which has been great, shes really working intensly on my hands and my face (its a bit like shes massaging my cheeks and it makes Sabine laugh with the funny faces I'm pulling!)

I'm still doing the same routine with Shivani and in the afternoons too, standing at the wall and reaching up as high as I can, then kicking a ball while standing (I gave to hold onto something) then walking.

I'm told that I will go for a procedure this week probably just a 1 day. Nothing else to report, no news is good new, I guess. Oh..there was one thing yesterday we had journalists from CNN and ABC TV and a couple others for a press conference as Dr Geeta is releasing a book on her findings from 75 spinal patients, I wasn't part of the interview because I have MD and really I'm discovering this treatment works much better for spinal patients, its only a 'bandaid' for someone like me, but at least this bandade has 'The Wiggles' on it so every time I look at it, it makes me smile and I have hope. You just can't bend over and take it every time life tries to screw with you and life has a way of challenging everyone, I have to remind myself constantly of that when I feel like a little girl stamping her foot who just bloody wants what she wants.

So far mum and Sabine aren't sick wooohooo!!

Back on track

I'm pleased to say I'm back on track with my walking, (my confidence is building...phew!) even though when I'm standing I still have a burning sensation under my right foot and up the calf muscle. The muscle has grown in strength and so its quite tight, but the more I stand on it and Shiviani helps me to stretch it gets better. Today I started with an Occupational Therapist, she is new here. She just did an assessment on me today and on Monday will be working on my hands and arms, so I'm looking forward to adding something new each day ontop of the 2 physio sessions. I'm actually starting to feel (now don't get excited just yet!) some changes in my right shoulder. When I travel I use a manual wheelchair which doesn't have arms. After a while both shoulders ach because my arms almost hang out of the shoulder socket and this is uncomfortable. I'm noticing this time that as I sit I'm not getting that same aching feeling. Also in physio when I'm standing I'm doing arm exercises where I raise my arm outwards and it is rising up a bit higher and not quivering so much, which is good as it gives me something to work with. The changes that take place will just be 'bit by bit' and I find that in itself a challenge.
I've been talking to the other patients and its been a great emotional support, especially how they cope when they return home after treatment and they go through the highs and lows just like me. As I described it, I'm just like a duck, smooth sailing on top but I'm paddling like shit underneath just to keep a float!!
I've just had an IV of stem cells so I'm waiting for the affects to kick in, mum is down stairs in the common room playing a game with sabine and lunch will be here soon. Sabine is doing so well. At physio yesterday there is a 3 year old boy having treatment and the therapists have been trying to make him walk with his walking frame (its such a tiny frame) he cried and screamed, Sabine went over to him and chatted for a few minutes then handed him the frame and said 'here take it' and he did! The therapists were so pleased even though Sabine didn't know why it was so hard. This isn't an easy environment to be in for anyone and Sabine is really taking it in her stride.
Tomorrow there isn't any physiotherapy so we have arranged to go to The Taj Mahal, Sabine is so excited because she has been learning all about it at school.

Arrived in 1 piece

After a long flight we arrived back at Nutech Mediworld. Sabine was such a great help, even though she was tired as were we. There was a bit of confusion with our room and we were on different floors for the first night, but the next day this was rectified and we now have adjoining rooms with mum. Nora is my carer and she arrived at 9.30am with a beautiful rose for me. She has very good English which is a bonus because I have no Hindi! I went down to physio at 11am and Shivani did an assessment. Some muscle groups have stayed the same, my right leg is a bit stronger and my right hand is slightly weaker. In the afternoon I went back to physio to do my walking which hasn't changed over the last 3 months which in reality is a good thing but it would be good if I'd had some improvements. I had a fall about 2 months ago and my confidence has taken a battering so I haven't been doing alot of walking but have been going to the pool and walking to try and get my confidence back. So shivani will take it slowly with me, just short distances to begin with (20 steps) I had two injections on my first morning in each arm then in the evening I had an injection into my vein and then at the base of my neck on each side. Because I'm here for 1 month they dont waste any time getting into it. I spoke to Dr Ashish last night and shared my concerns and basically that I just don't get the whole thing. I have an exercise bike at home its a Motormed Bike that i sit in my chair and pedal it has a motor which can increase the intensity like you are going up hill. Before my second treatment I would pedal on levels 2 and 3 for 40 minutes, now I can pedal on levels 4 and 5 for 45 minutes which is actually quite a jump as I've never cycled on those levels. I explained this to Dr Ashish and he was pleased but I just don't understand why it doesn't relate to walking. He explained to me that the cells only live between 10 - 12 days if they haven't attached to a muscle to grow, the ones that have attached to the deteriorated muscle continue to grow, but when I've returned home if a new muscle not previously affected by the MD starts to weaken there are no cells floating around to attach to it and stop the break down. Which in reality means that I need an injection each day as a preventative measure, but that's just not going to happen in Australia. So where does that leave me and future treatments.....ummm....I don't know yet, I haven't processed the reality of this I only have enough energy to focus on this treatment, on today, tomorrow hasn't begun yet.
Sabine has settled in really well. when I'm at physio she helps the other therapists with the children having treatment or the siblings who are here and bored! She throws them a ball to catch and is enjoying having this role as helper. In the afternoon she pops down to the nurses station for a little while, helping them and enjoying there company. They all love her and give her lots of hugs and pinch her cheeks. For those who know Sabine know shes a very independent child and knows her own mind...spirited! I love her determination and I know she will make an awesome adult with great life skills, but she is struggling a bit with other people helping me, shes very protective, so its great that the staff here have embraced her desire to help and given her a 'special' role. Don't children have a way of holding a mirror up and reflecting you. When I was a child, about 3 years old, we had no gate on the fence separating the front and back yards, so if I wanted to I could go out the back door through the gate and into the front yard, I never went through but I had the door to freedom if I wanted. Dad finally put a gate up and the next day mum watched me from the kitchen window drag a bin over to the fence, climb up and drop over the other side! When I was give the choice for freedom I didn't take it but as soon as a barrier was put in my way, pffft...theres no way I'd have that! Its that stubborn determination that has kept me going in life and I see it in Sabine, my poor parents ha ha ha!!!!
Back to physio today and this afternoon I had a ride in an ambulance to have tests done ECG and a scan just to make sure all was well with my heart and yes I have one and its healthy. Its always such a drama transferring me in and out of cars and on examination tables, but no body dropped me so that's a good thing :-)
Thanks to those who send me encouraging emails....your words help so much.
2 days down....26 to go (not that anyone is counting ;-)

Tinned spaghetti, soft toilet paper and Hanna Montanna!!

I think we have the staples all packed. We fly out tomorrow afternoon for yet another round of stem cells. This time I'm taking my daughter Sabine and Mum and will be hiring a carer in Delhi, her name is Nora and we've spoken over the phone a few times, so hopefully it goes smoothly. We are staying 4 weeks.
For the first time I'm actually stuck for words, I've retreated into my emotional cave in anticipation for what is install before me. Think my spirit is tired before I've even begun this round.
Theres a song by a Nickelback called 'If today was your last day' I really like the words...'whats worth the price is always worth the fight'....
I'll keep you updated as I go. Thank you to those who have continued to send positive emails, text messages and phone calls over the last 3 months since my last trip, I know life gets busy for everyone and your thoughts are appreciated.