27 degrees

I live in Queensland, Australia so I am no stranger to oppressively hot summers. I've never really enjoyed summer here, with the only redeeming features being swimming, cold beer and mountains of yummy stone fruit - things that are synonymous with a Queensland summer (for me, anyway). I've always thought I was born in the wrong hemisphere (and always thought I should be French). Summer has just arrived and temperatures are regularly hitting the low 30s (celsius) already. Being new to the whole MS thing I am now dreading summer more than ever, because it looks like we are in for a steamer this year.

Last summer was a whirlwind for me as I was in and out of hospital and managed to stay in airconditioning for the most part. I did discover, however, that my heat limit is somewhere around 27 degrees. Beyond that temperature I notice MS symptoms popping in to say 'hello' like an old, unwelcome visitor. My legs and hands tingle and my voice box goes haywire making me sound like I've smoked Winnie Reds since the age of two. Sounds sexy, I know. So I have developed a few tools to help me cope when things get too hot to handle. I've always maintained a collection of handheld Chinese fans (our Chinatown sells a lovely, cheap if yet sometimes unattractive selection), so I always have one in my handbag. They are actually great. I also take a canteen of water everywhere I go. You might be surprised to learn how quickly you can cool down when you pour a bottle of water over your head and feet. When in public you might attract fearful looks from passers-by who fear you are a lunatic, pouring water all over your Sunday best and fancy shoes, but at least you'll be cool. (it's even more effective when you yell 'OH YEAH!' while you do it). I keep a light coloured umbrella/parasol in my home, car and office for really hot, sunny days and I also keep ice packs and a Koolyband for my neck handy. It's kind of annoying but I now try to plan my days ahead, if I can, to ensure I can be in airconditioning wherever possible.

You might ask, 'But what about picnics, cricket, croquet and foxy-boxing, lady?' WELL. I am pleased to inform you that these activities can be modified for the heat-handicapped! You can have a picnic virtually anywhere. That's right. Dining room table, kitchen floor, couch, bath tub, on your boyfriend's head. Cricket and croquet? Well, there are plenty of hallways at work and at home, so when the urge arises I already have my green set to go. Scrunched up paper also performs well as a ball substitute. As for foxy-boxing...you will have to buy my book for that.

But seriously. Heat can be terrible for people with MS. I know of one lady who completely loses her vision when she overheats. That just sucks. Thankfully I'm not that bad and once I cool down the symptoms slowly disappear. I have to tell you though, my social life suffers a bit. My once cherished pastime of running is now a distant memory (though I will continue trying at the airconditioned gym). Alfresco lunches and BBQs are also out on hot days. I now console myself with the thought of being a modern day mermaid: living in a pool, having an effortless tan and beautiful green hair from the chlorine (I am a bottle-enhanced blonde) and being hand-fed grapes by servants. OK, I can't stay serious here, and I may be complaining but what's a former super-fit social butterfly to do? If I don't laugh about it I'll cry!

I'm not entirely sure where I'm going with this post today (might be the beer) but I know I should feel lucky that I am enjoying airconditioned comfort as I type this rant. I am staying in a beautiful beach house this week (lucky) with the clan (lucky) and the temperature is currently somewhere around 30 degrees (boo). It's just a few degrees too hot to stay out for long so I will be a shut-in until it cools. Now, where's the beer...?

And now for something completely different...

What a week! It turns out there was some confusion with my latest MRI report. My thalamus seems stable but the old lesion is still active. The new lesion is actually in my spinal column, which is...interesting. I am yet to have the results explained to me, but the doctor's priority seems to be getting the drugs into me, so I shan't complain. On Monday this week the hospital called and said I was to be admitted on Wednesday for more chemo. Thank god my boss is super cool with last minute notice (she's a bloody gem actually), despite my hectic work schedule. I had to postpone a really important trip to North QLD for this treatment and she just shrugged, bless her cotton socks!  I was infused yesterday and today I am home resting and drinking endless cups of tea. I had a very bad feeling about this infusion for some reason and was compelled to tell everyone how much I love them constantly. MS is such an emotional and physical rollercoaster and I think my usual optimism has given way to reluctant skepticism. But enough whingeing! The infusion went really well and thanks to the generous dose of phenergan (pre-treatment) I was unconscious for most of it. My lovely mum sat by my side the whole day and it was a great comfort. Just in time for the needle to come out, my partner and his four cherubs came to pick me up. Having the kids around makes me play tough so it was really good to have them with us last night - and they all give great cuddles. Their nan came over for dinner and we had an early night. My heart pounded really hard in my chest all night but apart from that I felt surprisingly good.

I am a bit drained and weak today but I have some time off work to recover so I plan to use it to full advantage. Yoga, reading and sleeping is on the cards for today, and a visit from my fabulous sister (who will no doubt bring goodies and cheer). MS symptom-wise I am doing well. I can't ask for more really! More chemo in two weeks and then it should be check-mate for MS. Hazaar!

Did I mention that chemo makes you chemically 'hot' for a week? I can officially confirm that I AM HOT baby! Only downside is no smooches for seven whole days!

Thank you to all my friends and family for the huge love and support you have given me. I love yooooooos.

Number 6

My neuro's registrar called me yesterday with some less than good news. I have a new lesion in my thalamus. I have been hesitant to post this today, since I am in a bit of shock, but this is part of the 'journey' (for want of a better word) I'm on. So I'm sharing the good, the bad and the ugly. I am unsure if I am feeling unwell today due to the MS, or if I am just shell-shocked. Maybe a bit of both. I feel like a puffy lump of lead. I feel like MS is trying to kill me, and I worry that it will win. I am worried about what is happening to my thalamus as I type this. It's a pretty critical part of one's brain and I really need it to work, damn it. I am terrified, in a word. I am considering writing a living will, just in case things get nasty again. We are hoping approval for the chemo comes through next week so we can get on top of it before any damage occurs. I fainted and vomited at a cafe near my office two days ago (was pretty embarrassing!). I brushed it off as low blood pressure or low sugar, but now I worry that it was my brain. Worry, worry, worry. I am looking for some positives but admit I am feeling defeated today.

If you are needing some inspiration today, all I can say is: be grateful for what you have now, because I am.

But wait, there's more!

So much has happened since my last blog...where do I start? Welllll...

I have met with my local MS coordinator, MS nurse, MS psychologist and most recently the MS physio. I have learned so much more about MS, and I thought I had it pretty much covered. WRONG! I won't go into the boring details of my fearful reality checks but suffice to say I am now looking at my old, unwelcome visitor, MS with different eyes. It now seems more and more likely that I have had MS for much longer than these past 11 months. Looking back over the years I realise there were signs of something going on for more than 10 years. The MS nurse noted my history of illnesses and immune related issues, like asthma, endometriosis and stomach and bowel problems and gave me a knowing look that said "this is a classic story for many folks with MS." That, strangely, cheers me up and makes me feel less and less like I was hit by a steam train this year. He also gave us a lesson in MS treatments, particularly the different types of chemotherapies. I am one of a lucky few in Queensland, and possibly even Australia, that has access to these drugs because my Neuro is not very conservative. He doesn't label himself an MS specialist, but it seems that he is certainly viewed as one by his peers. And he's MINE! I will just have to tell him he is never allowed to retire or move interstate...

A couple of weeks ago I had a much deserved (and long awaited)  holiday with my lover to Koh Samui, Thailand. Those of you with MS might be thinking I'm mad for going to a notoriously hot and muggy destination, but we actually managed it spectacularly well. And besides, there is no way I will let MS get in the way of anything I want to do! We zoomed around the little island on a scooter together, shopped, ate amazing food and sampled strange local delicacies, slept, read, drank, swam and got all smoochy and romantic. It was fantastic. It was just for one week but it was the best week I have had in a long time. It got pretty hot some days but for the most part we had mild mornings and afternoons. When it got too hot for me when we were out of our air conditioned resort room I would just jump into the ocean fully clothed or in my swimsuit and jump back on the scooter. Other times in the shopping district in Chaweng I would tip a bottle of water over my head and feet and keep wandering. We cuddled tigers, leopards, monkeys and elephants and swam in beautiful waterfalls. It was a dream tropical holiday.

The following week back at work (eww), however, I started to get some crazy, new symptoms. I developed some pretty hardcore neuralgic pain in both of my legs.WTF! I tried to remain positive but it's hard to stay calm when you have seering pain that no drug like a good old nurofen or mersyndol can stop. It kept me up for two nights and I couldn't go to work. So it was off to the GP for a chat. She called my Neuro and they concurred that it was a relapse or flair-up and therefore time to visit the hospital clinic. So, naturally, I panicked. My lovely man was travelling for work when the flair up started and my beautiful mum came to my rescue and stayed with me until my Neuro appointment.  I had to take a big dose of valium to sleep and dragged myself to the PA hospital the next day. Through all of this though, I was thankful that I remained able-bodied and still had good vision. There HAS to be a positive when things are going sour, right? My Neuro was super cranky and sick with the flu so THAT was awesome (but I still love him!). After he made about 10 cranky phone calls and yelled at a few people he told me that I needed more Rituximab (chemo) and another MRI. I'm still waiting for the chemo dates but thankfully the pain has subsided and I just have a wonky/sore left leg occasionally now. I can totally deal with that. Walshie (formerly Micky, his nickname has evolved so stay with me here, folks!) theorised that my flair-up might just be due to getting too hot too often in Thailand, but he didn't want to take a risk.

Then today I had another MRI. I'm no radiologist but I reckon the pictures look pretty good so I am staying positive. I couldn't see 5 big lesions like last time and could only spot one obvious white spot. I don't get the results until my next trip to hospital, so I'm playing the waiting game again, but at least I don't have to stay in hospital and eat that heinous food! Hooray for small victories!

 The other big event for me this week was my first meeting of other folks with MS. I have been equally terrified and curious to meet someone else with MS ever since the diagnosis but I was worried they would all be sad and crippled lonely people. Of course when trying to raise funds, the MS Society of Australia will use the most disturbing images and stories and that can be hard to reconcile in your mind when you have the disease. But the comforting reality is that is only a small percentage of people with MS and most folks live pretty normal lives with the occasional interruption. So I rocked up to my first yoga class at the MS Society headquarters to find 8 other women there, ranging between my age (33) and about 60. And they could all walk and talk. Thank god. More than 50% of us had been diagnosed this year, and a couple of them had lived with MS for about 15 years. I was like a steel vice and could not talk for fear of bawling but after the yoga class we sat around and had a talk. Everyone wanted to share their stories and ask each other questions. One women admitted that she only came to see what we looked like, and if we could walk! So now the big mystery of 'others with MS' has been misspelled for me I can tick that off my list of things to do. Now I'm gearing myself up for chemo and MRI results. Please wish me luck!

Stay well  x

  

Finally, some good news! A round of applause for modern medicine!

So it's been a while since my last blog. I had actually written a page a month or so ago but stupidly forgot to hit 'save' and all that appeared on my blog for viewers was a heading...and no post. Such a 'tard. Anyway. There is still great news though!

My last appointment with my neuro revealed that the chemo from February was still working like a charm. The CD19 cells the Rituximab is designed to kill were still at undetectable levels and that means I don't need an infusion yet! I've been having monthly blood tests to check the cell levels and the rule is that if I don't hear from Micky (my neuro) then it's still good news. I've had 3 tests so far and no phone call. I have one more test in a couple of weeks and then go back to see Micky in October. I am planning a week off work in between all of this, very soon, and my only wish is that things will stay quiet until after that! I really need a holiday and some pampering.

I consider myself extremely lucky even though, admittedly, I will need to have more chemo eventually. But any break, no matter how small, feels like a little miracle to me at the moment. The only caveat Micky gave me was that if I do have a relapse now he won't be able to do much. SO I have decided there are to be no more relapses ever, thank you very much.  I have a pretty intensive vitamin and health care regime that I'm sure can also be attributed to my current wellbeing. Every day I take 3-4 grams of fish oil, Vit B multi, Vit C, calcium, zinc and Vitamin D. I take the occassional inner health plus tablet and some slippery elm. I sit in the morning or afternoon sun for about 15 minutes every day without sunscreen. I exercise fairly regularly - runs and walks. I see my Chiropractor fortnightly and my GP monthly. I get fortnightly massages and see my psychologist regularly to keep my panic in check. I drink a glass of red grape juice most nights (the alcoholic variety), soak in the bath with a book once a week, and try to get at least 9 hours sleep every night.

This is a lifestyle I've always tried to maintain over the years, and managed it very inconsistently, but now I feel like there is no option to slack off. Ever. And there are certain things that I just cannot skip - like my fish oil and sunlight. I freak out if I forget my daily dose and worry that something bad will happen. That's a bit of crazy talk really, but I know how important these things are to managing MS and keeping it at bay. If anyone out there has any experience with this or any advice about things I could add to my regime I would really love to hear it - and maybe swap notes. I am still yet to meet another soul with MS so I feel a bit isolated. That will hopefully change soon as the MS society are sending a local coordinator to visit me soon. I think the idea is that they will offer me services that might help me cope and possibly introduce me to some other people in my area that have the same bullshit disease. I'll let you know!

Until next time...stay well!

And the winner is...more chemo!

Soooo. Yesterday I saw my neurologist.  He is a busy man who practically runs between patient beds and clinical rooms and doesn't seem to stop. He is an oddly attractive character who wears tight shirts and has a curiously groomed moe. This is, of course, irrelevant but it helps set the scene. I suspect he also moonlights as a comedian as he possesses brilliant comic timing and loves to take the piss out of me whenever the opportunity presents itself. My partner, Wolfgang, and I agree that he is very likeable, especially when he has good news.
So. The BIZ. After the initial how-do-you-dos we got right down to it. Short story long: he feels I should do Rituximab for the next three years. I must admit I was shocked - I didn't realise we were looking at that length of time for treatment. I get it though. I had a very aggressive onset. He said he wants to see the MS totally quiescent for a reasonable period of time and I'm fine with that. I am just not ready to accept three years of chemo so I asked if we can take it six months at a time and he seemed amenable to that - especially since I am in my 'child-bearing' years. I find it hard to keep a straight face when confronted with that phrase. Regardless of the fact that it is...well, true. We discussed my general well-being, which is poor, and he attributed my propensity for illness to the chemo. It's an immuno-suppressant so what can you expect?

While Dr 'Micky' (I just decided on this nickname) was scrolling through my records he briefly brought up a profile MRI picture of a head and brain on his PC screen. I asked him excitedly if it was my brain and he looked at me seriously and flatly said, 'No. You don't have one.' HILARIOUS.

Re-enactment only. Really.

He agreed to walk us through my series of MRIs since I have never seen the pictures. Again, I got a shock. He pointed to several large white patches on different brain images. They were my very own multiple scleroses. Aww! I thought they would be little, tiny patches that had wreaked massive havoc on my body. In fact, the patches were big. Some seemed to be in the order of 1-2 cms in size. Not mms - cms. I decided that instead of spurting expletives, as is my want, that I would try to have a sense of humour about it. 'No wonder I felt so bad," followed by a lame chuckle. Ok - so maybe I said 'shit' instead of 'bad', but this is a massive improvement for me. There has been so much crap news this year that I must admit my language has regressed to that of a 13 year old boy experimenting with the feel of new swear-words on his tongue. Colourful, in a word. So what, though? I'm all grown up. NB: if you are a future employer, I don't swear at work. Much. And I am REALLY SMART.

So that's the end of that chapter for now. I can go back to having an appetite and not feeling crazy-nervous. I go back in a fortnight to see Micky to discuss blood test results and book in for two infusions of Rituximab, the wonder drug. I really need to gear myself up for it. The build up is full on and the infusion process is especially daunting. I am excited to see a new MRI of my brain though. MRIs have so far not resulted in good news for me so I'm hoping they show a diminishment of the lesions. I'm feeling quietly optimistic and I have a good feeling about it! Wish me luck!

P.S. Eyeballs look COOL in MRIs - you should google it!

The importance of being Yoshi

This is my dog, Yoshi. Yoshi is an 18 month old West Highland White Terrier. I've had the luck of knowing Yoshi since she was about 6 weeks old. She's only been in my life for this short short time, but she has had a profound impact on me. Poor little Yosh has been very sick recently with complications from knee surgery.

She's an awesome little dog so I thought today I'd dedicate a blog post to the importance of being Yoshi.











 

Yoshi as a puppy

 Yoshi came into my life at a very unhappy and stressful time. She made my days so much brighter and gave me a reason to come home from work every day. She gives the best greeting of any dog I've ever met! She also gave me total and unconditional love and companionship at home - I was seriously lacking that. 
She's an incredibly affectionate, obedient and funny little thing.

After her recent knee operation :(

She's been my constant companion through an unhappy marriage, a divorce, 4 house moves, many illnesses (including the MS), the floods that claimed our 'new' home, job changes, a new relationship and much more. 

When I was sick in hospital I was pining for Yoshi terribly. It was kind of embarassing actually - I think everyone thought I was losing the plot because I couldn't stop worrying about her! But we'd just lost our house and she was being shunted around the place and I wasn't around, so I know she was pining for me too.

Until I met Yosh I wasn't a crazy dog lady, but I fell in love with her and she quickly became a really important member of my family. Now I would describe myself as a Yoshi enthusiast and a huge dog lover! I'm really mozzing for Yoshi to have a speedy recovery so she can return to her maniacally energetic ways soon.

To Ritux or not to Ritux? That is the question.

Today I started a couple of lists. In just over a week I see my Neurologist to decide the next step in the management of MS. The first list is comprised of about a trillion questions - and I know he won't have answers for all of them. For example: a) why am I sick ALL the time - is it the Ritux? b) are there any surprise lesions? c) can I try interferons? etcetera.Very soon I'll reach the six month mark since my last Rituximab infusion. I am pretty nervous about what the doctor will suggest and am scared in equal parts about taking the Ritux and not taking it. Nuts right?! It's like being stuck between a rock and a hard place. If I take it then it's more immuno-suppression and how long can you do that for without complications (don't answer that!)? And if I don't take it then I'm at risk of a relapse. It's a quandary.

 I'm acutely aware of my biological clock and knowing that we can't even think about conceiving until 12 months after my last Ritux infusion keeps me awake some nights. (I'm nearly 33 and am also blessed with endometriosis.) My partner has four beautiful kids and even though we only have them part-time they have given my life a whole new dimension that I just love. They are awesome children - they test me and more than reward me and I miss them when they aren't around. Experiencing milestones with them is pretty exciting too - tonight the littlest one lost her first tooth and I am so proud! In preparation for the tooth-loss (so wiggly but not quite there) we made pizzas and had a pizza picnic on the kitchen floor with red lemonade (a rare treat but it's a special occasion!). They really bring out the kid in me. But, I digress...I do wonder, if we had a baby, if the kids would feel threatened. But I know there is more than enough love to go around in our home, and we have dealt with trickier things in our relatively short relationship. I know my health should be my first concern, but it really is hard to ignore this desire to have a baby. Especially since I know I am with the right man (who, incidentally, is also awesome).  I suspect also that the cave-woman in me really wants to leave a biological legacy - one that merely donating organs when I'm plant fertiliser does not satisfy. You know, the whole blood-line thing. Yeah. Meh. I'm getting bored, and I'm sure you are, so I'll move onto list number two.  Oh, a side note: I'm starting to think red lemonade was a bad idea tonight...the kids are so hyper right now and it's past their bedtime.
Let's see. The second list is kind of a work in progress. It's a combination of affirmations and 'big' to dos. Stuff that I feel I need to tell myself and do to feel good about life and where I'm at. Without totally embarassing myself I will share a few items with you. After all, that's why I started this blog.

Affirmations:
1. I am healthy and strong
2. I have MS, it doesn't have me - I'm in control
3. I am beautiful (yes, I have to tell myself this. you should try it.)
4. I deserve happiness

'Big' to dos
1. Join the Alliance de Francaise and finish the full language course
2. Run the Bridge to Brisbane
3. Go to the north pole on that giant ice-breaking ship and see polar bears and other cool stuff (I'm shit-scared of the ocean and boats so this is a scary one!)
4. Ski in the snow

There is more...but I won't bore you with the detail. Or, more like, I won't tell you because you'll think I'm totally coo-coo-cachoo. They're all legal though... So much to do, so little time.

Breaking Bad(ness)

Ok. My first blog was pretty full-on, wasn't it? It's hard to be up-beat about my MS diagnosis, but it's not all bad.  I guess. It's hard, but not impossible. There have certainly been good things to come out of my experiences with MS. I guess you could say 'by-products" of MS. I don't take things for granted anymore. Ok, ok...so I still take refrigerated goods for granted, but the big stuff? No way. My family, my partner, my friends, my ability to make a living, my ability to see and walk. These are but a few things I give thanks for every single day. I'm not religious in any sense but I know now more than ever that I am lucky to have what I have and know what I know. That's not to say I didn't appreciate what I had before my diagnosis. But with the gift of perspective now I know that I shouldn't delay that phone call to my mum, or skip lunch with a friend to finish this work report that can wait. And I no longer slave after hours at work when I am feeling too tired to go on - my health is more important than that. If I want to sleep in, I sleep in!

It seems silly to me that this is stuff we should already know, yet for the last couple of years this is what I did routinely. I was avoiding personal issues by burying myself in work and thought that promotion and recognition at work was all I needed to feel fulfilled. What a joke! In the 12 months leading up to my diagnosis my health went really downhill. I caught every bug in the air, was exhausted all the time, I stopped running regularly and packed on the weight. And the one thing that made me feel worthwhile (work) became so unappealing to me that most days I struggled to get out of bed (it didn't help that my boss at the time was a complete nutter!). I felt I had nothing to give anyone. I got weird infections and had to have emergency surgery to remove a painful abcess. Things were just utterly shit. My wonderful network of friends and family, my beautiful man and even my precious little dog couldn't help me out of this funk. Then to cap off an already rough year, the floods and MS came along. Woahhh! My head was exploding. WTF?!

The interesting thing I learned about myself after all of this is that I am remarkably resilient. I doubt that I would be in this frame of mind without the incredible support afforded to me, but I do know my threshold for badness is much higher than I thought possible. I always thought I was a bit of a soft-touch, or a wuss. I am actually a tough, strong and smart (if not slow to learn!) woman.

When the doctor told me to 'live my life' and 'enjoy every moment and stop to smell the roses' I could have head-butted him for being so cliched and condescending. I thought 'How the hell would you know?! Don't say stuff like that because it's bullshit.' I didn't want to hear it because it was scary and I knew it was true. It's hard to hear it from people you (rightly or wrongly) assume have a perfect life. But, as cliched as it sounds, I think it should be everyone's credo.

For me, life is now a double-edged blade. While there is beauty and wonder, there is badness and ugliness. But I have realised that without the badness and ugliness you have no idea just how much beauty and wonder there is on your life. If I sound like some crazy zen hippy then too bad. Because for me it is true. While I wish like hell I didn't have MS, I am grateful for the lessons it has taught me. I am, in fact, one lucky lady.

The story of 5 little scleroses

In the week leading up to Christmas in 2010 my vision went haywire. My partner and I had just moved into a new house together for the first time and we had only been there for a week! Doctors thought it was a virus as I had extreme vertigo so my symptoms were shrugged off. After about five days of worsening vision and major fatigue my partner and I decided I needed to go to hospital. After 24 hours, several specialist consultations, two MRIs and four attempts at a lumbar puncture I was diagnosed with onset of MS. At this point I only had one sclerosis (in my brain stem) so technically it was an isolated demylination event. I was kept in hospital for three days and treated with some hardcore steroids and sent home on Christmas eve to recover. The steroids made me quite sick. I had a temporary and partial recovery for a few days before the return of double and blurred vision and fatigue. I insisted that it would get better, despite my worsening symptoms.

The following week I was at my parents place in the mountains attempting to celebrate a belated Christmas with my family, my partner and his four children. I knew it was getting serious on the night of our Christmas dinner. I was too fatigued to stand, or even maintain a conversation. That night in bed I noticed my right arm was tingling and going numb. At this point I hadn't realised just how bad MS attacks could get, but I was scared and in denial nonetheless. As luck would have it, the very next day my house in Brisbane flooded completely. While the heroic men in my life salvaged most of my posessions, I was preparing to return to hospital for another MRI.  I was starting to think I had some serious karmic issues from a previous life. Why the hell were these totally shitty things happening?! That night my symptoms took a pretty severe turn. I lost feeling in my right arm, and right side of my head and torso. My balance centre went - I couldn't move my head without vomiting, I couldn't walk, let alone sit, and my swallow reflex was failing. I couldn't cough or talk properly. To add insult to injury my hormones decided it was also time for my period! GREAT. The next MRI revealed two more scleroses. The doctors confirmed it was Multiple Sclerosis. I was pretty out of it for a few days and I felt like I could die - and I would have been ok with it. The doctors this time were a bit baffled. The steriods should have worked and yet I had new lesions in my brain. For the next week I was put on daily infusions of immunoglobulins - a human antibody treatment. It worked a treat...for a short while. By this time though, my vision had nearly fully recovered and I was independant enough to send home. That in itself was a triumph. But then I remembered I was homeless!

My partner and I stayed with his lovely elderly mother while we regrouped and assessed our situation. We took a couple of days to enjoy time with the kids and friends and to distract us from all that we had been through. Then it worsened again. I was really panicked to realise that the tingling had spread to all of my limbs. So, it was back to hospital. By the time I was admitted to a bed I was, again, in a bad way. I couldn't walk unassisted. My legs and arms had lost feeling and my face and mouth were numb. I thought it was never going to end. The doctors were starting to suspect lymphoma was the culprit since it looked like MS on scans, but it was not behaving like typical MS. They convinced me they needed another lumbar puncture to rule lymphoma out. Now THAT was the last straw for me! I remember saying something to the effect of, "fuck off!" incredulously at the doctor, quickly followed by an apology for my lapse in manners, then seriously: "no fucking way!" Every time I needed a needle now, for whatever reason, I freaked out - and needles never used to bother me. I had scars all over my hands and arms from dozens of canulas (and my veins had all collapsed) and I just did not want any more freaking needles. They insisted it was necessary so I sucked it up for another spinal tap - although I insisted on strong sedation first. It's funny that, even at times like this, you can find something to laugh about - namely, my drugged out remarks to the nurses and my family throughout the procedure. My poor family and partner were just exhausted and beside themselves. It certainly wasn't just me going through this. Yet another MRI found two more nasty scleroses. It was not lymphoma - but a very aggressive onset of MS. We were devastated.

Pincushion: words of encouragement from my love

The doctors had exhausted the early phases of treatment and decided to bypass the 'intermediate' or management treatments, like interferons, and go for the big guns. They wanted to start a drug called Rituximab - a type of chemotherapy used in luekaemia. In a short period of time I swung from "absolutely not" to "give it to me now". It was a hard decision to make and stand by, though. The doctors had to appeal to the medical board to give me the extremely expensive treatment after they denied it on the first application ($10k per infusion and I needed two!). It finally came though. The infusions were administered over a fortnight. It went well - the only side effects were hardened and hot veins and it took a couple of months for that to disappear completely. Most importantly, it arrested the MS attack. I was, and still am, so grateful for that.

This all happened in the space of eight long weeks - it was the most intense and stressful period I have ever endured. I was not able to work for three months and got pretty bored lying around in bed all day, every day. It has now been four months since my last infusion. I've had time to process my experiences, find a new home and return to work full time. Life is returning to some form of normalcy but I know it's just the beginning of my new life.

Is this thing on?

Be gentle...this is my first time in Blog Land.