These are the Days of Our Lives......

I haven't written for a few days because I've been feeling grumpy....in fact i think my emotions have been reflective of all the seven dwarfs personalities!! Michelle flew home on Wednesday night, I was sad to see her go but also realise its a step closer to coming home. Her stay here was great, the perfect support and shopping companion, love you sis!

Thursday moring I woke in a lot of pain and could hardly move. I had difficulity participating in physio. One of the Drs examined me and said there was swelling, so presciibed anti-inflamatory medication and a pain killer, I googled the medication but couldn't find an explanation on them, but to be honest i was in so much pain i didn't care. Friday morning I was only slightly better, my physio session was minimal and I still wasn't able to practice walking. I went to yoga class but only did a few stretches. I'm still getting my injections morning and night, 2 in the morning and one in the evening.
Dr Geeta came to see me on Friday afternoon. I tried to explain as best I could the pain I was feeling, with out sounding like a whimp! I asked her if its common for MD patients to be in so much discomfort. She said to a degree because we feel everything unlike the spinal cord injured patients, but she added, 'you are frail' then smiled at me.....told me to just rest and by Monday I should be fine. I was processing what she said, specifically 'frail'....i think my ego was dented as i just couldn't let it go, I may have driven Nicki a bit crazy as we'd be watching TV, then all of a sudden I'd come out with....'I am so not frail'! I just felt so pathetic.....think I need to work on letting go ha ha

Saturday at physio I was still in pain and couldn't perform th exercises as well as i wanted, i became quite frustrated and started to cry. My therapist was worried thinking I was in pain, which I was but more than that it was the pain was stopping me from doing what i wanted to do. I'm very aware that I'm on a time frame and I don't want to lose a second. I dont have time to be sitting aroung resting and in pain!!! gggrrrr! Saturday afternoon I decided to have a sleep and watch a movie. Around 7pm we had a phone call advising us that more bombs had gone off in Delhi, 8 km from us, to stay in during the evening and avoid markets on sunday.

Nicki and I slept in on Sunday and took the morning slowly. Around lunch time we took a taxi to the local shopping mall. The security checks were more intense than previously due to the bomb blasts. The shopping centre was very busy. Nicki and I enjoyed coffee and some chocolate mud cake smothered in warm chocolate sauce and icecream...ummmm....then i returned a pair of jeans that didn't fit haha...geee Claire..wonder why!

Todays Monday and my physio session was better, even though the pain in my lower back is still there. Two injections this morning as usual. Nicki has braved the streets to get us take away coffee. Shes counting down the sleeps, 4 to go now until she returns home, so there will be a changing of the guard this Friday.
Thanks again for you supportive comments and emails....it really helps xx

One Flew Over the Cuckoos Nest

Monday morning just after breakfast the nurse knocked on my door and announced that I would be going to the other hospital for my first procedure. I felt my heart sink into my stomach and asked what procedure will I be having, she said not sure, 1 day procedure, back later today. I went down to physio and did a light session then at 10.15 we left. Driving there was definately an eye opener, i have to keep reminding myself we are in a 3rd world country, its difficult to explain, but there is just such a contrast here. We went down a small street which was a dead end, the van stopped, i looked around and thought to myself 'i'm choosing to have medical treatment here'! I couldnt see where the hospital was, there was a small alley way where a huge black cow was standing, the taxi driver pointed in that direction. Michelle pushed me quickly past, squeezing between cow and wall, worried it might move suddenly. We walked down, found a door with a ramp and the ward boys came out to help us. The entry was small and crowded, behind a glass screen sat a nurse and she handed me paper work to sign, i read it and it stated 'that I claire Anderson have been explained the procedure'....ummmm...nope...i asked the nurse to explain what i was having done, 'injections in back'...mmmmm...ok...so i just signed and thought lets just get this started. We went into a very narrow and long lift, the ward boy pulled the iron doors closed and we went up. The hospital reminded me of what it might have been like in war times, it was a time warp (either that or a scene out of a B grade horror movie) I was watching Nickis face and could tell her stress levels were rising. The nurse gave me a gown to put on and i could leave on my leggins, soon a stretcher came in. Now from what I'm told, patients can wait hours to go to theatre, we only waited 20 minutes. Before they wheeled me off i asked about pain medication, 'no pain' said the nurse.....mmmm...i doubted that. As they wheeled me off i could see tears in Michelles eyes. Back into the lift and down to theatre. The theatre made me giggle, there are so many exposed wires, i know i shouldn't be judgemental, but for a country that can use high tech sicence, this is a surprise. I was transferred onto the operating table, the nurse made general chit chat because she could see i was nervous. Soon Dr Ashish Verma (Dr Geetas partner) came into theatre, i felt reassured to see a smiling familiar face. 'How are you feeling Claire' he said, 'I'm nervous' I said, 'No problem'...I asked if it will be painful, 'not really, you'll feel a bit of heaviness, but it is tolerable'..ok...well i've just got to go with it. They rolled me onto my tummy, put a pillow under my hips then wound the bed so that my head was much lower and a clamp was put on my finger to measure my pulse, however it came loose and i flat lined ha ha, these things just made me laugh, hearing your own flat line. So with bum point up Dr Ashish basted it with a brown steralising solution. The he began injecting the cells at base of my spine or top of bum crack! When the solution started going in, let me just tell you, i knew i was alive. It took three pushes to empty the syringeand i felt every push. Its like the solution was trying to make a path up my spine where there wasn't one, it felt full and very heavy, i let out a little cry and tried to breathe, ok next syringe an he started, i held my breath, by the end tears were streaming down my cheeks, i asked him for 5 minutes before he began the third. He asked me where i could feel the solution, it was up the left side of my spine the slowly moving out towards my left hip and waist, he was happy with that response. So he began with the final syringe, i could feel my right leg twitching and the nurse had to hold it still. I normally have a hight pain threshold from pervious experiences of surgery and treatments, but this really hurt, after the second push i asked him to stop for a minute, i couldn't breath, the he finished it and he handed me a gause to wipe my tears. All the time i layed there, i prayed for this treatment to help me, i'll suck up the pain, i'll do it again if i have to, but please make it work for me. The table was tilted so that the cells would move a little to the right side of my body but i couldnt feel anything, but the heaviness eased slightly. I lay there for about another 10 minutes then they transferred me back to the stretcher, my body felt fragile and i was nervous to be touched near my lower back.
As they wheeled back into the room i could see Michelle and Nicki's faces, they looked like expectant fathers. i was transferred onto my bed, then the ward boys came back with two bricks to elevate the end of the bed, we laughed! I had to lay still for 4 hours, at 4pm i was allowed to roll on my side for 30 minutes then i could sit up.
The girls sat, looked at my face and saw my tears, they had tears too, i can't actually share with you the words i used to express the pain, not language becoming of such a fine young lady! Nicki decided she'd had enough, she lay down on the spare bed, pulled the blanket over her head and mumbled something like, MD's ok, can we go home now! Then she went to sleep for 2 hours. I slept for about an hour, then woke to see lunch had arrived. Have you ever tired eating rice while laying on your back! Michelle gave me a few spoon fools but it rolled off the spoon to easily, so i decided to eat Nicki's LeSnack cheese and crackers, museli bar and then bit later some chocolate. The girls took turns rubbing my lower legs and feet because the ached, i kept asking the time, waiting to roll over. Finally 4pm came, Michelle helped me to roll and i lay there until 4.30, sat up and Nicki started packing our things and saying we're leaving now. She helped me change back into my t-shirt quicker than ever, she made me laugh. Finally at 5pm we were allowed to go home.
The day felt long and was emotionally draining. Dr Ashish will give me a week to see how i'm feeling then consider doing the injections again, but maybe this time from the top of my spine. I'm going to ask for something for the pain, i'm not sure how lucky i'll be because the opinion is that this procedure doesn't warrant it, its only minor....mmmmm....see how i go.

Have you seen the washing man....the washing man!

Getting some pointers from Dr Geeta in physio, in my room having an IV drip and saturday night dinner in foyer.

Ok, bear with me while I explain about the washing man. He's a bit like the phantom, we know he exists but no one quite knows when he'll turn up or what he'll turn up with! We often walk around asking each other if they've seen washing man and you can guaranteed he's just been or still coming and he'll arrive Indian time, which means you have no idea!

I started Friday morning with physio. Dr Geeta turned up and the atmosphere always changes when the 'boss lady' is there, we are pushed a little more and try things a little differently. I had a really good physio session, noticed certain muscle groups are bit stronger. Dr Geeta watched me walk and made some suggestions, I need to remember to shift my weight from one leg to the other before stepping, relax my shoulders more, breathe, concentrate on lifting my toes and dont swing my legs...ok...so she wants me to do this all at the same time, being a woman I know I can multi task, but how much can a koala bear!! Lots more practice to do.

Fridy afternoon we went shopping, then came back to do yoga, after we went to an Italian resturant for dinner, it was Andrews last night.

Saturday morning i didn't perform very well at physio, i think i did to much the previous day and was fatigued, even the physio noticed i wasn't as strong. I tried on my foot supports again, i seem to continue having difficulity with them and its frustrating me.

After physio the nurse told me i'd be having my first IV of stem cells. I was looking forward to seeing how my body would react. About an hour later my body started to ache all over but specifically those areas of my body that are the weakest, Michelle rubbed my feet and lower legs to ease the pain. i said to her 'haven't we done this before' remembering when i had scapula fusion surgery and she rubbed my lower back until i went to sleep. I slept for several hours and woke up at 5.30, feeling a little better but still aching. We went down stairs to have the usual saturday night dinner get together. It was one of the carers birthdays and he brought cake, so of course i had some and the sugar rush made me feel better for a while, that and the McDonalds, which normally at home i'd never eat, but my body is over eating curry already. I feel like I'm in an episode of Survivor India, 'your challenge if you choose to accept it is to survive on curry for 60 days curry' :-)

Today is sunday and i'm taking it easy, will probably get together later and play cards to pass the time, still feeling quite tired and want to be running on all six cylinders for physio tomorrow morning.

Groundhog Day!!

Hi Guys....the picture is of Michelle and I outside the hospital, don't look too closely we were feeling hot, bothered an grumpy!! For those of you who have seen the movie Groundhog Day, you will know exactly what I mean, same thing different day!! Tuesday started with physio, i do about an hour or just over now, then two injections, this time one in my arm and the other was shared in each thigh. We decided to go to the Hyatt for lunch, they have a buffet. It was nice for a change. Tuesday night we met in the foyer with a few other patients and their carers to play cards, from my perspective i was playing for sheep stations! Played a few rounds of 21 and then Uno. One of the carers took a walk to a bottle shop and bought a few bottles of bacardie breezera ($1 each!) Patients can't drink but the carers were in their element sitting back having a little reminder of the comforts of home, we once again ordered pizza, it was great fun.

After physio on Wednesday we met with Dr Geeta, it was lovely to sit and ask a few questions, except I couldn't think of anything being put on the spot. We chatted for a while and i my memory began to work again, i asked for a hand rail in the shower, which i got and is bit easier. Dr Geeta told me, which i didn't know, that she doesn't normally take on Muscular Dystrophy patients from overseas because the treatment is continual due to the progressive nature of MD, so what she has to do with me is figure out how many stem cells i need to stop the muscle detoration then a few more to rebuild the muscle, its more difficult than treating a spinal cord patient, infact the physio therapists work them much harder than me. I asked her why she allowed me to come and she said after seeing my video she couldn't say no, she went onto explain how a patient from Qld who has a spinal cord injury and is a mother of three said to Geeta that she didn't want another mother to go through what she has and was going back to Australia to spread the word, i wonder if because I'm a mother it helped her to decide to treat me. She suggested i return in about 3 months and the just whenever i feel my body going through a period of detoration. She also told me of another patient who works for the Labor party on a Federal level and has motorneurons, told her about a loop hole in the Australian regulations on treating incurable and terminal patients, they can import medications. Dr Geeta is goint to forward me his email address, because as she see's it, once she works out how many stem cells i need, i could inject daily (like a diabetic). I know thats a long way off, but its something to work towards and is hopeful for having treatment at home, so now i just have to get intouch with this guy and follow it up.

After meeting with Dr Geeta we went to Deelhi Haai, a local market. Andrew came with us and enjoyed the shopping experience, in fact he ate from a cart there and was still standig to tell the story last night, we were not that adventurous. It was so hot, when we returned Nicki and i both had headaches, think we were dehydrated, Nicki fell asleep for a while, i went to yoga with Michelle and then had an early nigh. Because i have to be careful what medicatiuons i take i asked the nurse for something as my pounding head was making me sick, she also came back with vitamin B12, vitamin C complex and folate, from what i understand my blood tests came back that i had low iron levels, but to be honest i didnt really understandwhat was explained to me. (yes, i will follow it up)

Today is Thursday and i'm taking it easy, i feel bit drained. Michelle has gone shopping again. I completed physio and the therapist added a few new exercises, my new foot supports arrived, but i couldn't stand in them, hard to explain but basically they sit too high up my calf, so they will be cut back and we'll try walking in them tomorrow. But the good news is that my 'gait' is improving, my right leg is almost walking normally, both Nicki and the therapist watched me walking with the frame made the commented it has improved, still long way to go from my perspective (but I'm my worse critic!!!!!!) the progress is slow and steady and thats the important thing. (keep telling me that!)

The face of Delhi changes in 30 minutes

Some of you will be aware of the bomb blasts in Delhi on Saturday night. There were 5 blasts one was about 15 minutes from us, however we felt nothing, 90 people were injured and 30 died. We've been advised to avoid open markets but can go to the mall as there is security to get in there. I think it is hard for those who live here as its their home and safety which has been damaged. I don't feel concerned for my safety.

Saturday afternoon we went to the local market, i have to admit it was a little stressful walking on the road with the traffic. We only stayed an hour, enough time to buy some Dvd's, bath mat and iced tea. On the way back Nicki pushed me, i have to laugh because she was so focused looking left, then right, forward behind, looking for not just cars but tuk tuk's, bikes and people all at the same time mind you, she just went for it, as she ran across the road yelling aaaaggghhh!!

Saturday nighs dinner in the foyer with the other patients and their friends, parents, wife's, husbands, siblings, was great, about 19 of us. Its interesting to hear each others story, the people they had to leave at home and who is with them. There are mostly Australians here. We ordered pizza from pizza hut and shared with some others. Everyone here is at a different stage in their life, they are here with hope in their heart, the strength and determination to succeed, to do everything they can to suck the 'marrow' out of life, I feel so at home here (on a personal level not physical) even though we are strangers we share an unspoken common bond. Its so great to not verbalise my feelings and someone just knows what my soul speaks by a simple look or a smile - they dont imagine what its like, they know.

Because of the bomb blasts our plans to go to the market changed on Sunday. Nick left at 6.30am with Andrew to visit the Taj Mahal and returned at 9.30 pm. It was a long day but she was glad she did it. Michelle and i stayed at the hospital, the day dragged a bit, we even got excited when lunch arrived (we are so sad!)

Even though there wasn't physio on Sunday we still had injections, just one in the morning and in the evening. Monday morning i went through physio, then had an injection in my arm and shared the second injection in each calf muscle, it feels like a bee sting. I was then measured up for new foot supports, the physio therapist felt the ones i brought with me don't support my foot enough, apparently they will arrive in about 3 days, lets see how we go!

I can't believe one week has gone by already, 7 more weeks to go. Thanks again for all your posts, hearing from friends and family really helps keep my sanity, well some of my sanity!

Almost organic!

Michelle went to the market yesterday with two other carers to gather supplies, specifically eggs as we are very excited to learn how to boil them in the kettle. The sales pitch at the market for the eggs was 'almost organic'!! Only in India can something be almost organic, its become the local joke.

Went through the same routine at physio, then i put on my AFO's, and walked for about 10 minutes using the parallel bars, going to take me a while to get comfortable wearing shoes and socks again. I then had two injections, one syringe in my arm and the other syringe was inected either side of my spine (lower back). At night i recieve one injection in my right arm. We met up with Kevin (he has a spinal cord injury and lives in Sydney with his wife and baby girl) his mate Andrew to watch a movie in the foyer where there is a TV and DVD player, no airconditioning there but we decided the company was more important, also they have TimTams!! Talking about food, forgot to mention that Nicki and i recently ordered a bowl of chips at a coffee shop, when it arrived we bent our heads down to look at chips, looked at each other and then glanced up at the waiter who had a perplex expression, we counted them, 13 chips, it probably doesn't seem that funny but we laughed thinking that someone somewhere was looking out for us!

I had a nanna nap in the afternoon then went to yoga, (see picture above in our room before yoga) still half asleep and decided that little princess here doesn't like being yelled at after waking, but the session was good for me.

This morning after physio i was given one syringe to be shared in each hip then one in my left arm. I have to remember, left arm morning right arm evening.

Met a great guy, David, whos here making a documentary, his sister Amy (from the USA) who has or had Lymes disease has had reatment here. David is back recording various patients treatments and asked to interview me, and as you all know how shy I am, (not) I took the opportunity to sit with him and share my experience, David will be back in 3 weeks to follow up.

We're just waiting on lunch then heading out for a while with Kevin and Andrew for a coffee, even though I'm not sure if i'm allowed to drink coffee, i have to treat my body as if i'm pregnant, so I'll have to look into it further.

Bye for now :-)

Shop till you drop!

Yesterday ended with a yoga class, oh my gosh, it was so funny, the instructor is ex army and gave instruction like a sargent major, really loud, direct, short and sharp! We all did as we were told for a change, he was a bit scary, I think my sister is the only person i know who has been asked to leave a yoga class and this was no exception, we just couldn't stop laughing, mainly from pain, he was easy on me, i got special treatment!! But we will go back on Friday.

Today began with physio, the same routine as yesterday but she had me walking a bit longer, she called it 'gait' training, i laughed cause i think my bum resembles a double roller door than a gate! I've taught myself bad walking habits so we need to retrain my body, tomorrow i have to put on my AFO's so i stop tripping over my feet, i hate them, but know its necssary for better balance and posture. I had 2 needles this morning, 1 straight into my arm and the other, half injected into each tricep muscle, each day they will focus on different muscle groups.

We had a rest after this then got a taxi to a shopping mall, to get in we had to go through security checks, metal detectors. It was nice to just get out see something different and buy soft toilet paper!

Michelle and Nicki have gone out to a medical supply shop, the bathroom doesnt have hand rails in the shower or near the toilet, i was given a toilet frame on wheels, for my own dignity i wont go into details but lets just say it wasn't pretty. The tiles are bit slippery and one carer fell and broke her leg, so i'm not taking any chances, the girls are looking for something to make life easier for me to be more independent.

The nurse will be in soon with my evening injections. Thank you for adding your comments to my blog, i get very excited to have communication from Team Australia!! Also, Simon if your reading this, the 'team india' towels are brilliant!!

we're on a road to nowhere.....come on inside!

It felt like the day began at sparrows, still feeling bit jetlagged. Went down to physio and was delighted to see Dr Geeta, she is a softly spoken lady, direct in her speech and very compassionate. The physio therapist began working with me, going through every muscle group from my fingers to my toes! Dr Geeta took video of me during this time, then got me up walking along parallel bars a few times, i did about 45 minutes of exercise which was enough. Michelle walked on the treadmill and chatted to Andrew, he's here supporting his friend and offered to show us around, which is great. After physio i had my injection of stem cells and they took blood, now anyone who knows me, knows that i don't part with anything easily and my blood is no different!! Apparently i have small veins and my skin is very sensitive, I felt cool too which doesnt help, the nurse squeezed my arm until it was bright red then tied a band around my wrist, finally they struct gold, with a vein in my hand. I was required to travel to the other hospital for an ECG and an Ecocardio (sumthing, i cant remember the name) It was almost like waiting for a medicare procedure, the hospital was crowded, but cool which was a relief as we were transported in an ambulance, which was a very small van, the seat belts didn't work and the driving was an experience, one hand on the wheel the other on the horn, no such thing as one car one lane, we dodged people, cows and traffic. We waited about an hour, went down a hall to a tiny room, my chair didn't fit through the door, everyone rushes to help me stand up, but they pull in different directions, in the end i have to be firm so that michelle can get me up and in there, she helped me on the bed and the nurse did the first test, then we were told to wait, the dr came about 45 minutes later and did the ultra sound on my heart, so its offical i do have a heart!! I must admit it was a relief to come back to familiar ground and eat lunch (chicken pasta so michelle was in 7th heaven) Looking forward to catching up with the other patients at yoga today, i'm told to be prepared, its not all lovely music and meditation. Must go..Nicki just brought me a cup of tea and a hand full of peanut M & M's..a girls got to keep her strength up!!

Welcome to India

Arrived in Delhi, India Monday evening at approx 8.30pm Local Time, after leaving Perth Sunday Midnight. Spending Monday in Malaysia International Aiport, where we spent the day in the airport hotel sleeping and eating. Well some of us did!!! sleep that is...our accomodation is small but adaquate and we have all we need but i can see that in time we will miss all our creature comforts of home. Getting accustome to our room was quite funny with , nicki furiously ringing the nurses call button and wondering why the light was not coming on, but being impressed by the swift services of the nursing staff!!!everyone has been wonderfully helpful with other patients and carers popping in to say hello. I had physio assessment and a small injection of stem cells to see if i have any negative reaction, one of the Drs will come and see me in 3 hours. I need to be at physio at 9am tomorrow morning, that will be a shock to the system, the physio must have seen the expression on my face and asked 'is that to early!' Nope, no problem :-)