Yoga For Me.

So, I often drive home after a yoga class, in a state of... authenticity.  I can't quite explain it any other way. I have found today that trying to capture in words, how I feel after a yoga class is an elusive task which maybe I just don't possess skills for right now. Does everyone feel differently after a yoga class, depending on their experience and their focus? Perhaps - or maybe we all feel the same.  I hope so!

I would love to do a yoga class every day to learn to maintain this state for longer periods of time.  It is so easy to lapse out of when you stop for petrol, answer the phone or just return from the yoga studio to your everyday life.  While I do have a home yoga practice, it is often rushed or interrupted with demands for breakfast. So while I get a lovely stretch, I don't always get the state of mind I am trying to describe... but here are a group of words which is my attempt at describing how I feel during and after a yoga class.

Present.
Stretched and open.
Spacious, open, expansive.
Open mind,
Open heart,
Open thought.
Open to love,
Open to pain.
Moves in, moves out.
Nothing is permanent.
Nothing holds on.
Clear and unhindered.
Purposeful.
Nothing is good, nothing is bad.
It is.
Within.
Boundless.
Soft.
Slow.
Enough.
Breath.
Simple.
Breathe in, breathe out.
Thoughts move in.
Thoughts move out.
Be.
Being.


This is a lovely love song that, while being totally self-indulgent on my behalf, has some pertinent lyrics for my mind while practicing yoga... "stay open".  I'm not normally a soppy love song kind of gal, but this song speaks to me right now.  Check it out here, Rhye - Open.

Tysabri Stats and Research; The Good, The Bad and The Ugly!

Just read an interesting blog on Tysabri (Natalizumab) and PML.  It had some interesting stats.  Thank you Multiple Sclerosis Research Blog.  This is a great blog and I would suggest you follow it if you have MS.  It presents the research - the good, the bad and the otherwise!


115, 400 patients treated with Tysabri worldwide as of 31st March 2013

372 cases of PML while using Tysabri reported worldwide to 4th June 2013

85 patients who developed PML while on Tysabri have died (23%)

287 patients who developed PML while on Tysabri survived (77%)

Overall incidence of PML 3.13 per 1000 patients using Tysabri

Factors increasing risk of PML: JCV positive, previous immunosuppressant use (IS), Tysabri use > 2 years

Previous IS use approximately 3-4 fold greater risk of PML than patients with no previous IS use

Duration of Tysabri use prior to PML diagnosis 8-94 doses (mean 40 months)

Important to be tested for JCV every 6 months

Tysabri reduces relapse rate by 81%

Tysabri reduces disablity progression by 64%

Greater than 1 in 3 patients have no disease progression while on Tysabri


Here is a PML risk flow chart for your perusal...









So for me, I am Anti-JCV anitbody status negative, I have no complicating factors, therefore my risk of PML is 1 in 10, 000.  However I have a friend whose Anti-JCV Antibody status is positive, she has no prior IS use and has been using Tysabri for 25-48 months, therefore her risk of developing PML is 1 in 189.

Moral of the story.  Research, research research, assess, assess, assess!!  You should be speaking in depth with your neurologist about starting or continuing to use Tysabri.  Make him or her earn their payment; they are working for you and your health.  But don't start from a blank slate, take in some prior knowledge which you have gained from reading and researching.  The decision to commence using Tysabri was one I did not take lightly and I am JCV negative.  The benefits of using Tysabri are huge, but so are the risks.  I don't have any side effects and love Tysabri, but every time I am being infused with it, I am not worrying about my risk of developing PML, because I know where I stand with it.  Good luck MSers - put your glasses on and get researching.

Tysabri, You Little Champ!

Last week I had my six monthly MRI.  No biggie... my time in the machine wasn't long enough.  I had just fallen asleep when all the scanning finished and they pulled me out of the tube.  I've gotten very good at falling asleep in the machine, even with all the loud noise.

Today I had my neurologist appointment to go over what the scan had discovered about my brain. (That it is non-existent!)  Consciously I hadn't given the outcome much thought.  But subconsciously I think my body did.  I started to notice that my right leg felt a bit funny.  I mentioned it to my husband and he said, you said the same thing before your appointment last time!!  Then I pondered whether this meant the Tysabri was no longer doing its job or whether my head was playing tricks on me for a bit of drama and anxiety.  In the end, I told myself that I would know soon enough and it wasn't worth worrying about just yet.

The other thing that I did differently this time, is that I did not pre-empt what the neuro had to say.  I didn't go and pick up my report early.  I was meant to go and pick it up on Friday, but I forgot.  I could have picked it up yesterday (Monday) but I thought since my appointment was 24 hours away I could live without knowing the results.  Therefore I went into my appointment not knowing what the report said.  The down side of doing this was I paid $180 for about 10 minutes with my neuro, not asking about what I had read in my scan report.  FYI I did get $150 back from private health insurance.

So what did the neuro say?  ALL CLEAR.  No lesions, no activity - nothing new to report!!!

This is what the comment section of the report had to say: No significant interval change since 7 December 2012, with no features of PML identified.

PML you ask?  Progressive Multifocal Leukoencephalopathy - Tysabri increases your chance of getting PML, a brain infection that usually causes death or severe disability.  I think I may have written about PML previously.  PML starts out as JC virus (John Cunningham Virus).  I don't have the JC virus, but the JC Virus Test is not 100% accurate.  A "false negative" result occurs when the test indicates that the JC Virus is not present in your body, when it actually is.  This has occurred in a small number of people who have taken the JC Virus Test.  And this is why they look for signs of PML, which has symptomology similar to MS, in an MRI.

What does this mean for me now?  I continue on my once monthly infusion of Tysabri - it's a lovely three hour break anyway.  I don't need another MRI for 12 months, but I do need to see my neuro in six months.  I can live with that.

Woo Hoo!!!

Pre Diagnosis Diary Excerpts Part 2

Here are my diary entries leading up to my diagnosis with MS in late 2003.  It is a continuance of my last post.  I'm not posting every entry or even full entries, because that would probably be as boring as batsh*t to you and I'd like to keep a skerrick of privacy for myself.  I would just like to let others who are going through the process of being diagnosed know, they are not alone.  All of us with MS have been where you are standing right now... on the precipice of a life changing event over which you have no control.

25th Nov 2003, "Initial consultation and physical examination could not confirm MS today. Dr T (neurologist) does not know what is causing my problems, thus he is sending me for MRI tests.  For some reason I feel better after seeing Dr T.  He said he see 3-4 people a day like me.  He called to check my abnormal ANA tests and was going to request further tests on my blood, by Dr A (general practioner) had already done so.  I'm not even sure what the tests name is or even what they indicate, but both were negative.  Dr T seemed pleased.  I was petrified this morning and cried in Dr T's office.  He spoke about my anxiety and has gotten me booked in for MRIs asap."

"Ryan and I have spoken about my negative attitude.  I am going to try and re-frame things with a more positive spin."

26th Nov 2003, “I can't tell what is normal sensation and what isn't.  I feel like I am doing everything right and nothing is changing."

"I have sort of pins and needles in my lower back now.  Am I making these things up - am I imagining them?  I have the MRIs tomorrow morning.  Should be an experience!  I'm not nervous about doing the MRI, just what they may reveal.  Maybe I am just noticing every little sensation now."

1st Dec 2003, "The results of my MRIs came in.  Dr T says that I don't have MS.  I do have some white spots (lesions) in my brain scans; however they are in the wrong spots for MS.  So my symptoms and slightly abnormal ANA tests are unexplained.  Dr T stated he was worried prior to the MRIs, but that after he is not.  He can't 100% rule out MS because he isn't God.  He wants to see me again in 3 to 6 months for a check-up.  I am very tired and have been in dispute with Ryan about the outcome.  He is very optimistic and hears through optimistic filters.  I am less optimistic and hear through my less optimistic filters.  I am seeing my psych on Friday."

2nd Dec 2003, "Feeling pretty down. I have these symptoms and no cause.  I don't feel like the neurologist was straight with me. Down."

8th Dec 2003, "I have MS.  My cervical MRIs showed lesions.  We are waiting on the cerebrospinal fluid (CSF) to fully diagnose."

This was my list of questions for Dr T.
1. What can I do to reduce the chance of MS relapses?
2. The role of stress?
3. Is there anything I could have done not to get MS?
4. I have no family history of MS; where did it come from?
5. Does my sister have an elevated chance of MS?
6. What are the chances do any of my future children have of getting MS?
7. Does heat worsen the symptoms or does it make relapses happen?
8. Is it better to have lesions in the neck than brain?
9. Any comments on diet helping MS?
10. Will MS make me susceptible to other diseases?
11. Are there any known triggers for relapses?
12. Weakness of limbs, incontinence, vision issues, please explain.
13. How expensive are the drugs used to treat MS?
14. Does relapse-remitting MS necessarily turn into secondary MS later in life?
15. Will I end up in a wheelchair?
16. Do we need to do evoked potentials?

What happened around this time is that Dr T was concerned about my cervical MRIs and pulled me into hospital for a lumbar puncture (or if you want the terrifying term, a spinal tap!)  The lumbar puncture was a horrible experience for me.  But along with positive MRIs, positive CFS markers for MS could give me a definitive diagnosis.  After a lumbar puncture you have to lay flat for 8 hours and I'm not sure if Dr T was concerned about my mental wellbeing or if he thought CSF test would be positive (or both) but my hospital room was booked for an overnighter.

I remember Dr T coming in, sitting on the edge of my bed and telling me I had MS.  I immediately broke down.  I'm not sure how he actually left the room because I was inconsolable.  He told the nurse to give me a sedative to calm me down and to help me sleep.  Ryan came in and was very supportive; we just hugged for an eternity.  I also called my close friend, Sandy.  She had given me my first book by George Jelinek, as she knew another woman with MS.  She also came in to see me.

In those early days, I'm not sure what I would have done if I didn’t have Sandy's understanding.  Anxiety, being terrified and devastated on top of knowledge about MS and maybe my complicated thinking style (complicated - so technical!!) are hard for anybody (including me and) including anyone who is also trying to come to terms with their loved ones MS diagnosis.  Sandy, luckily for me was (is) a good friend and an experienced counsellor/psychotherapist, who I respect and trusted with my wobbly mental health.  I think anyone in my position could do with a "Sandy" in their life.  I felt comfortable allowing her to see the entirety of my grief, rather than holding some in just in case she might not be able to cope with the um, depth and utter despair of it.

Ryan was amazing and supportive.  Never once did I fear he would run as fast as he could in the other direction, although I would have come to terms with it (and totally understood) if he had.  My family tried their hardest, although they knew little about MS, other than stereotypes.  My mum blamed herself for it, as mothers do I guess.  "What did I do wrong, what could I have done differently?”  I was grateful for being able to go to home to my mum and dad's house and lay on a bed and sleep as long as I needed to.  They looked after me well during this time. 

I told a selected group of close friends about my diagnosis rather than broadcast it willy nilly.   I think I did this because I didn't know how my MS would turn out. I told friends who I thought would not leave me in my time of need and who would ask me questions... I couldn't think of anything worse than telling someone and then having days and weeks of silence while they worked stuff out without letting me know how it was going.  After the first week, I wanted to talk to my close friends about it.  I don't think I could do it without crying though.  That didn't come for years!

At the time I was working as a advocate for vulnerable men released from prison.  I obviously didn't tell them about it, but I did tell my employers.  They were incredibly supportive and told me to take off as much time as I needed.  After a couple of weeks though, I was done being at home contemplating MS and my navel.

I was also seeing a psychologist.  I have to tell you, even though I had truckloads of support I still needed my psychologist to unload and work through my grief.  When people are diagnosed with a chronic or life threatening illness they go through a grieving process akin to when a close friend or relative dies... because their future as you perceived it has died with diagnosis.  Whenever I hear or know of someone who is diagnosed with a chronic or life threatening disease I always ask if they are seeing a psychologist.  I believe you need to get through the grieving process to move on with your life.  This is not to say the process is easy or you don't back and forth through the phases, but a psychologist can make the process tidier for you. Not necessarily shorter, but less time being stuck thus making it more manageable.  It is amazing how putting thoughts into sentences can help.

After my original diagnosis, I was very unhappy with Dr T way of dealing with me.  He treated me like I was a fragile, delicate petal in a way, perhaps because he was concerned about my mental state.  Those of you who know me, know this is not me.  However what I needed from him was to be told straight.  I talked to him about my concerns and was pointed in the direction of Prof K.  I love my current neurologist – weird right?  I’ve had him going on ten years now and I don’t see that we will be parting ways anytime soon.  He doesn’t sugar coat and he is comfortable with my fright!  He is knowledgeable, like a walking talking encyclopaedia.  I can ask him something and he will tell me the answer/s past and current in a way that fits with my level of understanding of MS.  I used to think he was quite eccentric, but not now and I trust him with my brain.  He would not be for everyone, but I do recommend him to everyone because I think he is the best in WA.  It is so important be happy with and trust your neurologist.  There is totally no harm in shopping around to find the right fit... you would for jeans so why not your neurologist? 


This final thing I want to write about in this post and my original purpose for putting my experiences out there in the cosmos.  Sandy came into my hospital room and I cried... a lot.  But I remember saying, even though I was crying and couldn't see my immediate way ahead, I knew everything was going to be alright.

That is a bit hard to explain.  I just had a strong sense the grief would pass and I would be ok.  I didn't know what the future held, far from it.  Every night for at least two years I would go to bed thinking I would wake up paralysed and needing a wheelchair.  I had hope this wouldn't happen and a cure would be found.  But I just knew everything would return to its place or its new place and I could cope with what life threw at me.  Mostly I go through my life thinking like this and I think that if you are diagnosed with an illness or even if you are reading this and you are all squeaky clean and peachy you should be endeavouring to cultivate this way of thinking.  You can cope; you just don't know it yet.  My good friend Jac told me, God wouldn't give you something you couldn't cope with.  I'm not really religious, but I like the sound of this, although it takes the power of coping away from you somewhat.  My good friend Travis once told me in reference to a boyfriend I broke up with, one day you will wake up and he won't be the first thing you think of.  I applied this to my MS.  I really believed these things and they worked for me in my time of need for great personal strength.  Find what it is for you and use it.

Well that is it.  I hope you enjoyed reading. Good luck if you are awaiting a diagnosis or have just been diagnosed. For all, work on those coping skills, you never know when they will come in handy.

xx

PS I am grateful for and would like to thank the people mentioned in this post.  Ryan, Sandy, Jac, Trav, my family and friends, who I may not have mentioned but you know who you are and also, my psych at the time, Christina, Dr T, Dr A and Prof K.

Pre MS Diagnosis Diary Excerpts Part 1

I remember when my MS diagnosis ordeal began, it was the 11th of November 2003.  By most MS diagnosis standards, mine was a walk in the park, lasting only a few short weeks.  Most take months and even years to reach conclusion.  Anyways for this post I am going to "reveal" extracts from my personal diary for you for some added insight of where my head was at when I was in the process of being diagnosed.  Obviously I am not adding everything; I need some privacy (some would argue writing a blog defeats this purpose), as does my husband, but I think you will get the picture of where I was at in general.

16th Nov 2003, "I may have Multiple Sclerosis, so my doctor, Dr A said on Tuesday.  I have semi-numb feet and they have been this way since I started my new job at M approximately six weeks ago.  I just thought because I was now standing more and walking for an hour in the mornings that my feet were adjusting from sitting in front of a computer all day.” 

“Doctor A said that it would be unlikely I would have MS, but there is a small chance that I do.  He said that if his wife was presenting with numb feet he wouldn't send her to the neurologist.  I decided it was important for me to know, so that I can make the appropriate lifestyle changes and stop worrying.  So I have a neurologist appointment in just over a week.”

“I still feel tremendously scared.  I worry about my future, my plans, how I will cope.  It is an ugly, debilitating and humiliating disease; well that's how it seems to me.  I am scared and upset and worried beyond belief.  I am worried the love of my life, Ryan will leave, when it has taken so long to find him.  On the other hand I (fortunately) feel healthy and am lucky to have supportive friends, family and Ryan.  I am lucky there are so many things I can do to re-balance the unbalance in my body that may be occurring.  I have started to read up on MS and there seems to be a lot of research and lifestyle changes and dietary changes I can make to re-balance my immune system."

At this stage I was already reading George Jelinek's book called, Taking Control of Multiple Sclerosis.

From the same date, "I guess it is fear of the unknown that scares me the most... what will happen if I do have MS.  I guess like the book says I could see MS (if I have it) as a challenge.  It is possible to maintain my health and this is the challenge."

"I don't know if I have MS.  I am worrying about things in the future that may not yet happen.  It's not time to worry, think about all the expended energy I am wasting by worrying about something I don't even know if I have yet. I don't have MS, I don't have MS, I don't have MS..."

17th Nov 2003, 5.40pm, "I have just finished the MS book by George Jelinek and it has proven to be most helpful... I feel I am prepared to face the neurologist now - I am more educated and more able to understand.  I am still scared because I don't know what the future holds, but neither does anyone else.

10.30pm, "Feeling low and worried again... I think I have more symptoms.  Part of me freaks out, part of me is rational"

I had a very interesting dream on the 18th of November that I wrote about, but I'm not going to add it in here at the moment, otherwise this will be one massive post.  I promise I will write about it soon.  I think it gives amazing insight into how my unconscious brain was processing the MS information and emotion overload.

23rd Nov 2003, "My feet are still sort of semi-numb, it's hard to describe.  The skin on my legs is sort of sensitive to touch.  I haven't been worrying about it as much, which is good.  I guess I've gotten used to the limbo of waiting.  My neurologist appointment is on Tuesday, less than 72 hours away, thank God."

24th of Nov 2003, "Spoke to Dr A today and I have a slightly abnormal ANA test.  This test tests auto-immune response.  I had a look on the 'net and there can be a number of reasons for this to occur.  It can occur in healthy people (ie a false positive test) or it can indicate you are fighting a virus.  And it can, of course mean auto-immune disease. More tests need to be done first."

"Again I am scared and worried for all the reasons I was before.  Fear of the unknown, babies, travel, study, course of the disease and Ryan.  Of course it is illogical to worry about those things now because they are always the unknown.  Nothing has really changed since yesterday."

"Worry.  It is such an unproductive emotion.  It doesn't achieve anything.  It makes me upset and stressed.  Life will go on.  No one knows the future and that is why I have to stay in the moment."  

So those are the first few days leading up to my MS diagnosis.  I’m going to add in a few more diary entries about the diagnosis and I am going to get to the point about this little project of adding in diary excerpts regarding my diagnosis soon. 

How do you think I was fairing?  I think I sounded remarkably composed.  Looking back I assumed I was not at all composed, but my diary tells quite a different story… to me anyways.  I think I was shitting myself, but I had some amazingly supportive and  understanding friends, a fantastic psychologist and an awesomely consistent, unshakeable and optimistic boyfriend, now husband.  I think he saved me from imploding.

I know I have been writing in parts of late, but I haven’t got piles of time to pump out a super post and my thinking is that maybe you don’t have hours to read a super post either.  Please leave some comments about how you think I was going during my diagnosis… it would be interesting to hear other people’s perspective on this or please tell me about your diagnosis.  Writing is cathartic you know!!  Until next time… sayonara.

Six Month Tysabri Results - Part Two.

Where was I?  Oh yes that’s right.

So I sat down at the kitchen bench, with my cup of almond milk coffee and opened the envelope.  Looking at the envelope now I must have opened it very cautiously and apprehensively, as the sticky flap is not torn at all.

I’m not sure if you have ever looked at a radiological report, but it has a bold comments section -  a summary of the results, which once you unfold your letter, you can’t miss (even if you are trying too). 

So are you ready?  My comment section reads, “No significant interval change since 7 June 2012”.

What does this mean?  Since starting Tysabri 6 months ago, I have not had any activity in my brain that is related to MS at all.  (Some might agree with the statement, I have not had any activity in my brain… since ditching my thesis!)  In essence right now my body is behaving as if it does not have MS.

The findings section reads, “Stable intracranial white matter lesions are again demonstrated with distribution and appearance being typical of demyelination.  There is no evidence of new enhancing or non-enhancing lesions.  There is no evidence of significant callosal or cerebral hemisphere atrophic change.  There is no evidence of PML or an intracranial mass.  There is no diffusion restriction.  The large cerebral arteries and major dural venous sinuses are patent.”

So the wonder drug Tysabri, or as my neurologist put it, the gold standard in MS treatment right now is WORKING for me!  In precisely the way my neuro predicted 6 months ago, with no new disease activity being present – at all.

Am I happy?  Hell yes.  Will I sit back and be content with these results?  Hmmm partially, maybe if after the next MRI in 6 months everything is all clear I can relax and trust Tysabri is going to continually work for me.  It is reassuring to know that many people who started taking Tysabri in its trial stage, have now been using it for 8 years to control their MS successfully – that is with no new lesions.

My neuro also predicted that I would have symptoms disappear that I may have even considered my normal way of being.  Well I know it wasn’t normal but my daily morning ritual of waking up and stretching in bed is now sans the Lhermitte’s sign.  Which was the very tingly, vibrations (a bit like very bad pins and needles) that used to vibrate down my spine and into my legs… and sometimes into my arms.  It was my daily reminder of my MS and on certain days it would predict how I would feel; if it was particularly bad, then my life was ending because my MS was getting worse.  I knew that wasn’t necessarily the case, but concerns, no matter how unfounded you are told those concerns are, can still have an impact on your life.  With a chronic disease like MS, you are hypervigilant in detecting new or worsening symptoms.  Hey, but you know what, I have rarely had the shocking Lhermitte’s sign in the last 5 months or so.

I cannot foresee any reason for me to stop Tysabri.  I do not have the JC virus and my lovely new Tysabri buddy is working for me with no unwanted effects.  One reason to stop, is if my body develops antibodies to Tysabri.  I guess you know this is occurring when your MRI shows new lesions or the cause of you having an early MRI is new symptoms.  I don’t believe this is going to happen to me.

If you are considering starting Tysabri and you are JC negative and have no history of taking immunosuppressant drugs then I would say go for it.  Tysabri may just be the drug to halt the damage your MS is doing to your body until a cure is found.  If you fall outside of this category, ie you are JC positive with a history of immunosuppressant drugs, please take a look at this link Natalizumab-associated PML Risk: June 2012 Update , seriously talk to your neurologist and consider your options (ie do your research), carefully.  Get a second and third opinion if necessary.  This article may also be worth anyone who is taking Tysabri or considering taking Tysabri perusing,  Taking Gilenya after stopping Tysabri doesn't suppress MS reactivation. 

Unfortunately Tysabri is not a cure.  When you stop taking Tysabri, your MS will reactivate most likely where you left off, but maybe worse.  So please do your research, consider your options, talk, talk, talk to people INCLUDING your neurologist and your local MS society. (Have I made my point yet?)  Any medication you are considering putting in your body should not be taken lightly... ever! 

There you go, that’s my post.  Sorry to anyone who couldn’t stand the wait.  I think my life is like a novel… it goes on and on, as do your lives. (If you have no idea what I am talking about, good.  But if you need context to that last sentence then check out the comments section on my last post!)  I like to share my MS stories in case they can help anyone who is in the same or similar situation.  Thanks for visiting and please leave your comments because I love them (and I promise I won't post about them much!)  Until next time. xx

Six Month Tysabri Results - Part One.

Hi there, long time no see.  Sorry it's been a long break.  No excuses, I am just slack!

Three  weeks ago I had an MRI because I have had six infusions of Tysabri.  Six infusions already - crazy town!!  Time goes so fast.  I have no problems with MRIs.  I’ve lost count of how many MRIs I’ve had – all I know is I have a pile of films that I have no idea what to do with.  Maybe one day I can have my own MRI brain and spinal cord art exhibition!  My kids could illustrate them.  Hmmm maybe I’ll wait until they are older, so they will know what they are actually drawing on and will have developed more of a sense of humour.  Anyways, I’m not sure if I am allowed to ditch them, I’ll have to ask my neuro in six months, but until then they’ll continue to keep the dust bunnies company under my bed.

As I mentioned I’m not concerned about MRIs.  In fact I informed the tech that I was going to get a half hour nap in while the MRI machine was doing its thing… He had the last laugh informing me the scan would take fifteen minutes with a break to inject the gadolinium contrast.  I would have to be good to get that short a nap in, which I am not.  So instead I relaxed and pondered what my results might hold. 

Six months earlier, when prescribing me Tysabri, my neurologist was adamant there would be no new disease activity; no new lesions, no new symptoms and definitely NO going downhill.  My previous MRI (when I was still the drug formerly known as “Mr C” or for those new readers, Copaxone) had shown new inflammation and activity – 5 new lesions, the most I had ever had in a six month period.  This indicated that even though I was injecting my wonderful (not!) meds daily,  my MS was active and more so than ever.   So even though Tysabri was touted as a wonder drug for halting MS in its tracks, I couldn’t get my hopes up.  What if it just didn’t work for me? 

In the meantime, I had another infusion of Tysabri.  I have to tell you there are absolutely worse things than sitting about for three hours watching a movie, texting friends or reading a book. 

Although at my last infusion I did meet an amazing woman.  Her name is Abby and she was infusing  in the bed next to mine.  She has stomach cancer.  Her medication options have come to an end as nothing was working anymore and she told me about all the alternative options she had tried.  I felt incredibly sad and helpless for her; her children are the same age as mine and she had been given just three short weeks.  My kids were with me too, for some of the time, being all boisterous and cute (or annoying depending on who you are), so I felt pretty uncomfortable.  I didn’t know what to say.  She was having a bad day – a bit teary and down.  Hell, if I was given three weeks I would be crying all day, every day.  She asked me how I was coping coming into hospital once a month, asked about how inconvenient it was, whether my medication was painful and how it was knowing that I may not have a normal life span.  This brave and incredible woman has three weeks to live and she is asking me these questions… It was humbling, humbling, humbling.  I asked her the same questions, after deciding it was more respectful to ask her outright what I wanted to know about her condition.

I told her that my greatest fear is my children developing MS.

At the end of my infusion all I could do was hug Abby.  I couldn’t make her cancer disappear, not even a little bit.  I told her would see her in four weeks’ time.   She didn’t look like she was just three weeks away from dying, so in my mind it is really hard to believe she won’t be there in four weeks.  She was hopeful, saying she’d outlived one time limit already.  I am so dismayed about her situation and how ungrateful I have been with my own life that words can’t describe how much I want her to be at the centre in four weeks. 

A week later I went into my local SKG to ask for my MRI report.  Although my family were in the car I tucked the envelope into my bag and tried to forget about how heavy it was on my shoulder.  What if the Tysabri wasn’t working, what if I had to change my medication again, what if… so many what if’s.

At home I put the envelope on the bench and tried to ignore it.  But it eventually its calling wore me down.  I am a need to know person.   I don’t do well with doubt and not knowing where my health is concerned, especially when my uncertainty can be quelled with a report sitting on my bench.  So I sat down and opened the envelope.

Ha… and that’s it for now.   Got to pick up my little darling from day care.  Check back in a few days and I’ll tell you more about what happened!!