tag:blogger.com,1999:blog-92148361900582789762024-02-21T01:54:17.800+08:00Lumpy CustardIt might not be perfect, but it's delicious.Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.comBlogger94125tag:blogger.com,1999:blog-9214836190058278976.post-89984418139426952862014-11-12T14:14:00.001+08:002014-11-12T14:15:35.083+08:00One Year of Masters Done.Phew, got to catch my breath.<br />
<br />
Wow, my first year of Masters in clinical psychology is done! I'm not sure if I passed my exam, let alone the units yet... but I think I have done all right.<br />
<br />
I have learnt so much more about psychology and what it means to be a psychologist this year than I did in my entire undergrad. Crazy, I know.<br />
<br />
Early on in the year I went from full-time to part-time. It was too much... for me and my family... and by that I mean too much for ME! I was looking at seeing clients and I was already at uni 5 days a week and studying like a mad person on the weekends. I was speaking to a friend in the course recently who said the previous week he had spent 66 hours doing work related to university, and that was a mid-range week! I made the right decision to go part-time, but I am envious of my colleagues who are half way through their two year degree, while I have two years to go.<br />
<br />
But I have done it! First year down. Yay me!<br />
<br />
Now I have to wait until early March to go back... what <i>will</i> I do with my time? Um, self care... read a novel in my hammock perhaps, go to the beach... laze around? I'm thinking about finding a part-time summer job, that will work around the kiddly-winks school, as that should keep me out of trouble.<br />
<br />
Cheers!Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-8366710007690044142014-07-22T20:25:00.000+08:002014-07-22T20:25:59.501+08:00Two Years on Tysabri<!--[if gte mso 9]><xml>
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Last week I saw my neurologist as I had recently had my annual MRI.<br />
<br />
<br />
I didn't feel compelled to collect a copy of the report before seeing him,
as I usually would. I didn't need to prepare myself, as I feel great on
Tysabri.<br />
<br />
<br />
With my whole family in tow, we enter my neuro's office; we exchange
pleasantries and sit down. He smiles and tells me everything is great. No new
lesions, no activity. This was not unexpected news. It would have been
unexpected for him to tell me there was inflammation and new lesions.<br />
<br />
<br />
My question to him was, so how long have I been on Tysabri? Two years he
says... That is two years with no activity, two years of it being like <i style="mso-bidi-font-style: normal;">I don't have MS</i>. Luckily for me I am JVC
negative, so I don't need to think about changing medications, or the possible
consequences of staying on Tysabri after two years. I suffer no side effects...
I remember after the first infusion I was exhausted, but in hindsight this may
have been the result of the worry and the what if's. I'd always told myself in
the early years after Tysabri’s release that I would never consider Tysabri,
due to the deaths of people on it. However after several years, new research on
hand - a more complete evidence base and being JVC negative I took the plunge.<br />
<br />
<br />
It's a bit strange trusting a medication... to trust it is working and
working day in day out, with really no way to monitor it, except for the annual
MRI and no new symptoms. All I have to do is show up once a month and offer up
my hand. I don't do anything. It's all rather passive... Which is not really my
style, but hey, there are worse ways to spend three hours!<br />
<br />
<br />
Interestingly my neuro mentioned that there are, give or take, 250 people in
Western Australia who show up once a month be infused with Tysabri. I hope it
works for all of them as well as it does for me. (I wonder if they have trust
issues?) Sometimes in the first months, people can develop anti-bodies to
Tysabri and have to stop, which would be sad and frustrating. I would love to
hear from anyone who developed anti-bodies, leave me a comment please.<br />
<br />
<br />
At my neurologist’s initiation, the rest of my consultation was spent
talking about The Lego Movie, and how it is not just good for kids. I didn't
need to ask questions about alternative medications, the what if's regarding medication
efficacy or new symptoms - so what else was there to discuss!<br />
<br />
Hope you are well xx<br />
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<![endif]-->Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-24420420256572784072014-07-15T16:58:00.000+08:002014-07-22T20:35:26.923+08:00Friendships.<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">What
does friendship mean to you?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Dictionary.com
suggests this: </span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">the state
of being a friend; association as </span><span style="color: windowtext; font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU; text-decoration: none; text-underline: none;">friends</span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">: to
value a person's friendship or a friendly relation or intimacy. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-AU;">So then I
looked at what the definition was for friend, which turns out is: </span><span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">a</span></span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;"> <span class="hwc">person</span> <span class="hwc">known</span> <span class="hwc">well</span>
<span class="hwc">to</span> <span class="hwc">another</span> <span class="hwc">and</span>
<span class="hwc">regarded</span> <span class="hwc">with</span> <span class="hwc">liking,</span>
<span class="hwc">affection,</span> <span class="hwc">and</span> <span class="hwc">loyalty</span><span class="hwc"></span><span class="hwc">.</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I’ve been examining what friendship means lately.</span></span></div>
<div class="MsoNormal">
<br /></div>
<h3 align="center" class="MsoNormal" style="text-align: center;">
<span style="font-family: "Arial Black","sans-serif";">Friendship is the hardest thing
in the world to explain. It’s not something you learn in school. But if you
haven’t learned the meaning of friendship, you really haven’t learned anything.
– Muhammad Ali</span><span class="hwc"><span style="font-family: "Arial Black","sans-serif"; font-size: 12.0pt; mso-bidi-font-family: "Times New Roman";"></span></span></h3>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I know I am not always a “good” friend. Weeks and
months can go by without me being in contact with my friends. It’s not that I
consider my friends undeserving of my time, rather for me as it is others, you
get wrapped up in your own life, your own commitments with your family, with
your job, with your studies, with your stresses. I think about my friends
regularly and often feel guilty about the time that passes between catch ups. When
I do, I do something about it to acknowledge a friend’s presence in my life...
call, meet, message, like a post on Facebook or send them some good vibes. I
think what most of my friends know about me is that if they are having a shit
time, I will be there for them... to listen intently over the phone or in
person, to hold their confidences, to run errands, to watch the kids,
whatever... </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I understand this is what my friends offer me too,
even though I am not always willing to receive it.</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">The lovely thing with friends is that you can leave
off where you were the last time you met, with a hug, smile, kiss on the cheek
and an acknowledgement of the time that has passed since you last saw each
other. You chat about what has been happening with the other and yourself as if
no time has passed at all. I think this is possible because the last time you
left your friend, you left them with an inherent understanding that they are
valuable to you, that you respect the time they have given you (and vice versa),
that you have genuinely tried to understand them and you love them even when
you may not see eye to eye. You leave with a mutual knowing that they have
positive regard for you and you for them. </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I have a friend that is having a tough time right
now. I have given her a lot of time for the last year, but have known her much
longer than this. Undoubtedly there has been something in this friendship for
me too, otherwise it wouldn’t have endured. But I currently find myself dropped
like a hot potato and I’m not really sure what to do or what it means. It's perplexing. The
friendship has gone from full tilt to almost nothing and by almost nothing I
mean if I am not driving it, it is not happening. We’ve talked and I’ve sent
texts... the message is always the same, yes we are friends. But there is
nothing else to say that we are – nothing that backs it up. No meetings, no
invitations, no calls, no messages, no Facebook likes... zilch. </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">I ask myself why I bother or what I have done wrong.
I bother because I value this person. She was a big part of my life for a long
time. I bother because she enhances my life. I bother because I thought we
understood each other. Perhaps I was mistaken. Maybe I did something wrong.
Maybe I have been trying too hard, maybe she is too busy (to hit a like
button??), maybe having me as a friend is no longer convenient or fits in with
her life now. Maybe she thinks I am oblivious and won’t notice seemingly
deliberate acts of omission.</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">For a while I felt abandoned, but a little time
helps that pass. I do feel used, but this is a result of being overlooked and ignored. Now
mostly I feel sad, because my friend is no longer my friend and I am having to
second guess myself and my actions in relation to her. None of her actions and
choices make me feel secure in our friendship. When I last saw her, she talked
about herself, while I patiently listened. She was unaware that anything was
amiss, or chose to ignore it. Then she ushered me out the door because she was
busy. This is not normally a problem, except that I didn’t leave with an
inherent understanding that I am valuable to her, she didn’t try to connect
with me. That and she seems to be ushering me out a lot these days. I feel no
positive regard. </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">And I have treated this person time and again with
liking, affection and loyalty.</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Perhaps one day we will talk and she will say, oh I
just didn’t think about my actions. Sure it’s an explanation - closer to an excuse, but not a good one and
not a believable one. Maybe she doesn’t consider me a friend anymore and just
hopes I will go away, which is rather passive and hurtful. </span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Anyways. What I put out to the cosmos for this person is happiness,
understanding and gratitude. What will be, will be... </span></span><br />
<br />
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Out to the universe.</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span class="hwc"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt;">Be happy, be safe, be well. <span style="mso-spacerun: yes;"> </span></span></span></div>
Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-24321059119200388962014-07-13T16:18:00.000+08:002014-07-22T20:34:59.756+08:00You've Got This.Healthline just launched a video campaign for MS called "You've Got
This" where individuals living with MS can record a short video to give
hope and inspiration those recently diagnosed with MS.<br />
<br />
I've been approached to share this website and am really happy to do so... because being diagnosed with MS is a BIG deal. It is usually a time when you think the worst. And like me (at the time of diagnosis), you may not know anyone else with MS, which means it is easier to think the worst.<br />
<br />
So please check out the videos here at <a href="http://www.healthline.com/health/multiple-sclerosis/youve-got-this" target="_blank"> You've Got This</a>.<br />
<br />
Best wishes!Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-21859804708474603162013-08-11T15:42:00.000+08:002013-08-12T07:59:07.801+08:00Yoga 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!<br />
<br />
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.<br />
<br />
Present. <br />
Stretched and open.<br />
Spacious, open, expansive. <br />
Open mind,<br />
Open heart,<br />
Open thought.<br />
Open to love,<br />
Open to pain.<br />
Moves in, moves out.<br />
Nothing is permanent.<br />
Nothing holds on.<br />
Clear and unhindered.<br />
Purposeful. <br />
Nothing is good, nothing is bad.<br />
It is.<br />
Within.<br />
Boundless.<br />
Soft.<br />
Slow.<br />
Enough.<br />
Breath.<br />
Simple.<br />
Breathe in, breathe out.<br />
Thoughts move in.<br />
Thoughts move out.<br />
Be.<br />
Being.<br />
<br />
<br />
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, <a href="http://www.youtube.com/watch?v=sng_CdAAw8M" target="_blank">Rhye - Open</a>.<br />
<br />Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com2tag:blogger.com,1999:blog-9214836190058278976.post-42560529940745890752013-07-13T11:54:00.000+08:002013-07-13T11:56:34.361+08:00Tysabri 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 <a href="http://multiple-sclerosis-research.blogspot.com.au/2013/07/natalizumab-pml-update-june-2013.html" target="_blank">Multiple Sclerosis Research Blog.</a> 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!<br />
<br />
<br />
115, 400 patients treated with Tysabri worldwide as of 31st March 2013<br />
<br />
372 cases of PML while using Tysabri reported worldwide to 4th June 2013<br />
<br />
85 patients who developed PML while on Tysabri have died (23%)<br />
<br />
287 patients who developed PML while on Tysabri survived (77%)<br />
<br />
Overall incidence of PML 3.13 per 1000 patients using Tysabri<br />
<br />
Factors increasing risk of PML: JCV positive, previous immunosuppressant use (IS), Tysabri use > 2 years<br />
<br />
Previous IS use approximately 3-4 fold greater risk of PML than patients with no previous IS use<br />
<br />
Duration of Tysabri use prior to PML diagnosis 8-94 doses (mean 40 months)<br />
<br />
<b>Important to be tested for JCV every 6 months</b><br />
<br />
Tysabri reduces relapse rate by 81%<br />
<br />
Tysabri reduces disablity progression by 64%<br />
<br />
Greater than 1 in 3 patients have no disease progression while on Tysabri<br />
<br />
<br />
Here is a PML risk flow chart for your perusal...<br />
<br />
<br />
<br />
<br />
<br />
<br />
<img border="0" height="314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjiLdBj5pDc7AXequ2S-UxKeQJB653twqufL2sVGtZJGzBu8BuWfMndApxfRMrIswYrcY-QeuIkm-Y_TL2Ime3uAacnz5XZapRz0PDorPaFFwH1Y3Z-gGqiD9OoDjJF0-nRuYDkp0QY_8/s640/PML+June+2013.png" width="640" /><br />
<br />
<br />
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.<br />
<br />
Moral of the story. Research, research research, assess, assess, assess!! You should be speaking <i>in depth</i> with your neurologist about starting or continuing to use Tysabri. Make him or her earn their payment; they are working for <i>you</i> 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. <br />
<br />
<br />Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-34794428394833439622013-07-09T13:48:00.002+08:002013-07-13T11:55:22.669+08:00Tysabri, 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
So what did the neuro say? ALL CLEAR. No lesions, no activity - nothing new to report!!!<br />
<br />
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.<br />
<br />
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 <span style="font-weight: normal;">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.</span><br />
<span style="font-weight: normal;"><br /></span>
<span style="font-weight: normal;">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.</span><br />
<span style="font-weight: normal;"><br /></span>
<span style="font-weight: normal;">Woo Hoo!!!</span>Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-25556309842372287492013-03-25T11:34:00.000+08:002013-03-25T15:58:42.844+08:00Pre Diagnosis Diary Excerpts Part 2<!--[if gte mso 9]><xml>
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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. <br />
<br />
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."<br />
<br />
"Ryan and I have spoken about my negative attitude. I am going to
try and re-frame things with a more positive spin."<br />
<br />
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."<br />
<br />
"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."<br />
<br />
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."<br />
<br />
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."<br />
<br />
8th Dec 2003, "I have MS. My cervical MRIs showed lesions.
We are waiting on the cerebrospinal fluid (CSF) to fully diagnose."<br />
<br />
This was my list of questions for Dr T.<br />
1. What can I do to reduce the chance of MS relapses?<br />
2. The role of stress?<br />
3. Is there anything I could have done not to get MS?<br />
4. I have no family history of MS; where did it come from?<br />
5. Does my sister have an elevated chance of MS?<br />
6. What are the chances do any of my future children have of getting MS?<br />
7. Does heat worsen the symptoms or does it make relapses happen?<br />
8. Is it better to have lesions in the neck than brain?<br />
9. Any comments on diet helping MS?<br />
10. Will MS make me susceptible to other diseases?<br />
11. Are there any known triggers for relapses?<br />
12. Weakness of limbs, incontinence, vision issues, please explain.<br />
13. How expensive are the drugs used to treat MS?<br />
14. Does relapse-remitting MS necessarily turn into secondary MS later in
life?<br />
15. Will I end up in a wheelchair?<br />
16. Do we need to do evoked potentials? <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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! <br />
<br />
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.<br />
<br />
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.<br />
<br />
After my original diagnosis, I was very unhappy with Dr T way of dealing
with me.<span style="mso-spacerun: yes;"> </span>He treated me like I was a
fragile, delicate petal in a way, perhaps because he was concerned about my mental
state.<span style="mso-spacerun: yes;"> </span>Those of you who know me, know
this is not me.<span style="mso-spacerun: yes;"> </span>However what I needed
from him was to be told straight.<span style="mso-spacerun: yes;"> </span>I
talked to him about my concerns and was pointed in the direction of Prof K.<span style="mso-spacerun: yes;"> </span>I love my current neurologist – weird
right?<span style="mso-spacerun: yes;"> </span>I’ve had him going on ten years
now and I don’t see that we will be parting ways anytime soon.<span style="mso-spacerun: yes;"> </span>He doesn’t sugar coat and he is comfortable
with my fright!<span style="mso-spacerun: yes;"> </span>He is knowledgeable,
like a walking talking encyclopaedia.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>I used to think he was quite eccentric, but not now and I trust him with
my brain.<span style="mso-spacerun: yes;"> </span>He would not be for everyone,
but I do recommend him to everyone because I think he is the best in WA.<span style="mso-spacerun: yes;"> </span>It is so important be happy with and trust your
neurologist.<span style="mso-spacerun: yes;"> </span>There is totally no harm in
shopping around to find the right fit... you would for jeans so why not your neurologist? <span style="mso-spacerun: yes;"><br /></span><br />
<br />
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...<i> a lot.</i> 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.<br />
<br />
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. <i style="mso-bidi-font-style: normal;">You can cope; you just don't know it yet</i>. 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.<br />
<br />
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.<br />
<br />
xx<br />
<br />
PS I am grateful for and would like to thank the people mentioned in this
post.<span style="mso-spacerun: yes;"> </span>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.<br />
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<![endif]-->Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-20634932668922599242013-02-26T13:26:00.001+08:002013-02-28T14:33:48.344+08:00Pre MS Diagnosis Diary Excerpts Part 1<!--[if gte mso 9]><xml>
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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 <i>diagnosed</i>. 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.<br />
<br />
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.”<span style="mso-spacerun: yes;"> </span><br />
<br />
“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.”<br />
<br />
“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."<br />
<br />
At this stage I was already reading George Jelinek's book called, Taking
Control of Multiple Sclerosis.<br />
<br />
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."<br />
<br />
"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..."<br />
<br />
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.<br />
<br />
10.30pm, "Feeling low and worried again... I think I have more
symptoms. Part of me freaks out, part of me is rational"<br />
<br />
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.<br />
<br />
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."<br />
<br />
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."<br />
<br />
"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."<br />
<br />
"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." <br />
<br />
So those are the first few days leading up to my MS diagnosis.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span><br />
<br />
How do you think I was fairing?<span style="mso-spacerun: yes;"> </span>I
think I sounded remarkably composed.<span style="mso-spacerun: yes;">
</span>Looking back I assumed I was not at all composed, but my diary tells
quite a different story… to me anyways.<span style="mso-spacerun: yes;">
</span>I think I was shitting myself, but I had some amazingly supportive and<span style="mso-spacerun: yes;"> </span>understanding friends, a fantastic
psychologist and an awesomely consistent, unshakeable and optimistic boyfriend,
now husband.<span style="mso-spacerun: yes;"> </span>I think he saved me from
imploding.<br />
<br />
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.<span style="mso-spacerun: yes;"> </span>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!!<span style="mso-spacerun: yes;"> </span>Until next time… sayonara.<br />
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<![endif]-->Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com4tag:blogger.com,1999:blog-9214836190058278976.post-79376982060984248062013-02-06T14:33:00.000+08:002013-02-06T15:43:41.238+08:00Six Month Tysabri Results - Part Two.<!--[if gte mso 9]><xml>
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<br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Where was I?<span style="mso-spacerun: yes;"> </span>Oh yes
that’s right.</span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">So I sat down at the kitchen bench, with my cup of almond
milk coffee and opened the envelope.<span style="mso-spacerun: yes;">
</span>Looking at the envelope now I must have opened it very cautiously and
apprehensively, as the sticky flap is not torn at all.</span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">I’m not sure if you have ever looked at a radiological
report, but it has a bold comments section -<span style="mso-spacerun: yes;">
</span>a summary of the results, which once you unfold your letter, you can’t
miss (even if you are trying too<i>).</i> </span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">So are you ready?<span style="mso-spacerun: yes;"> </span>My
comment section reads, “No significant interval change since 7 June 2012”.</span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">What does this mean?<span style="mso-spacerun: yes;">
</span>Since starting Tysabri 6 months ago, I have not had any activity in my
brain that is related to MS at all.<span style="mso-spacerun: yes;"> </span>(Some
might agree with the statement, I have not had any activity in my brain… since
ditching my thesis!)<span style="mso-spacerun: yes;"> </span>In essence right
now my body is behaving as if it does not have MS.</span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">The findings section reads, “Stable intracranial white matter
lesions are again demonstrated with distribution and appearance being typical
of demyelination.<span style="mso-spacerun: yes;"> </span>There is no evidence
of new enhancing or non-enhancing lesions.<span style="mso-spacerun: yes;">
</span>There is no evidence of significant callosal or cerebral hemisphere
atrophic change.<span style="mso-spacerun: yes;"> </span>There is no evidence of
PML or an intracranial mass.<span style="mso-spacerun: yes;"> </span>There is no
diffusion restriction.<span style="mso-spacerun: yes;"> </span>The large
cerebral arteries and major dural venous sinuses are patent.”</span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">So the wonder drug Tysabri, or as my neurologist put it, the
gold standard in MS treatment right now is WORKING for me!<span style="mso-spacerun: yes;"> </span>In precisely the way my neuro predicted 6
months ago, with no new disease activity being present – at all.</span></div>
<div class="MsoNormal">
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">Am I happy?<span style="mso-spacerun: yes;"> </span>Hell
yes.<span style="mso-spacerun: yes;"> </span>Will I sit back and be content with
these results?<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.</span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">My neuro also predicted that I would have symptoms disappear
that I may have even considered my normal way of being.<span style="mso-spacerun: yes;"> </span>Well I know it wasn’t normal but my daily
morning ritual of waking up and stretching in bed is now sans the <i><span style="font-style: normal;">Lhermitte’s
sign.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>With a chronic
disease like MS, you are hypervigilant in detecting new or worsening symptoms. <span style="mso-spacerun: yes;"> </span>Hey, but you know what, I have rarely had the shocking
Lhermitte’s sign in the last 5 months or so.</span></i></span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;"><i><span style="font-style: normal;">I cannot foresee any reason for me to stop Tysabri.<span style="mso-spacerun: yes;"> </span>I do not have the JC virus and my lovely new
Tysabri buddy is working for me<i> </i></span></i><span style="font-style: normal;">with no unwanted effects</span><i><span style="font-style: normal;">.<span style="mso-spacerun: yes;"> </span>One
reason to stop, is if my body develops antibodies to Tysabri.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I don’t believe this is going to happen to
me.</span></i></span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;"><i><span style="font-style: normal;">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.<span style="mso-spacerun: yes;"> </span>Tysabri may just be the drug to halt
the damage your MS is doing to your body until a cure is found.<span style="mso-spacerun: yes;"> </span>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 <a href="http://www.blogger.com/(http://multiple-sclerosis-research.blogspot.com.au/2012/07/natalizumab-associated-pml-risk-june.html)" target="_blank">Natalizumab-associated PML Risk: June 2012 Update </a></span></i></span><span style="font-family: Georgia,"Times New Roman",serif;"><i><span style="font-style: normal;">, seriously
talk to your neurologist and consider your options (ie do your research),
carefully.<span style="mso-spacerun: yes;"> </span>Get a second and third
opinion if necessary.<span style="mso-spacerun: yes;"> </span>This article may
also be worth anyone who is taking Tysabri or considering taking Tysabri perusing, <span style="mso-bidi-font-style: normal;"> <a href="http://www.overcomingmultiplesclerosis.org/News-And-Events/Whats-New-Out-There/Detail/Taking+Gilenya+after+stopping+Tysabri+doesn%27t+suppress+MS+reactivation/" target="_blank">Taking Gilenya after stopping Tysabri doesn't suppress MS reactivation.</a></span> </span></i></span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;"><i><span style="font-style: normal;">Unfortunately Tysabri is not a cure.<span style="mso-spacerun: yes;">
</span>When you stop taking Tysabri, your MS will reactivate most likely where
you left off, but maybe worse.<span style="mso-spacerun: yes;"> </span>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?)<span style="mso-spacerun: yes;"> </span>Any medication you are considering putting in
your body should not be taken lightly...<i> ever!</i> </span></i></span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;"><i><span style="font-style: normal;">There you go, that’s my post.<span style="mso-spacerun: yes;">
</span>Sorry to anyone who couldn’t stand the wait.<span style="mso-spacerun: yes;"> </span>I think my life is like a novel… it goes on
and on, as do your lives.<span style="mso-spacerun: yes;"> (If you have no idea what I am talking about, good. </span></span></i><span style="font-style: normal;"><span style="mso-spacerun: yes;">B</span></span><i><span style="font-style: normal;"><span style="mso-spacerun: yes;">ut if you need context to that last sentence </span></span></i><span style="font-style: normal;"><span style="mso-spacerun: yes;">t</span></span><i><span style="font-style: normal;"><span style="mso-spacerun: yes;">hen check out the comments section on my last post!) </span>I like to
<i>share</i> my MS stories in case they can help anyone who is in the same or similar
situation.<span style="mso-spacerun: yes;"> </span>Thanks for visiting and
please leave your comments because I love them <i>(</i>and I promise I won't post about them much!)<span style="mso-spacerun: yes;">
</span>Until next time. xx</span></i></span></div>
<span style="font-family: Georgia,"Times New Roman",serif;">
</span><br />
<div class="MsoNormal">
<br /></div>
Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com11tag:blogger.com,1999:blog-9214836190058278976.post-84698725977794707482013-01-29T16:40:00.002+08:002013-01-29T16:42:13.722+08:00Six Month Tysabri Results - Part One.<!--[if gte mso 9]><xml>
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Hi there, long time no see. Sorry it's been a long break. No excuses, I am just slack! <br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Three<span style="mso-spacerun: yes;"> </span>weeks ago I had
an MRI because I have had six infusions of Tysabri.<span style="mso-spacerun: yes;"> </span>Six infusions already - crazy town!!<span style="mso-spacerun: yes;"> </span>Time goes so fast.<span style="mso-spacerun: yes;"> </span>I have no problems with MRIs.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>Maybe one day I can have my own MRI brain and
spinal cord art exhibition!<span style="mso-spacerun: yes;"> </span>My kids could
illustrate them.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As I mentioned I’m not concerned about MRIs.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I would
have to be good to get that short a nap in, which I am not.<span style="mso-spacerun: yes;"> </span>So instead I relaxed and pondered what my results
might hold.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>This indicated that even
though I was injecting my wonderful (not!) meds daily, <span style="mso-spacerun: yes;"> </span>my MS was active and more so than ever.<span style="mso-spacerun: yes;"> </span>So even though Tysabri was touted as a
wonder drug for halting MS in its tracks, I couldn’t get my hopes up.<span style="mso-spacerun: yes;"> </span>What if it just didn’t work for me?<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the meantime, I had another infusion of Tysabri.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Although at my last infusion I did meet an amazing woman.<span style="mso-spacerun: yes;"> </span>Her name is Abby and she was infusing <span style="mso-spacerun: yes;"> </span>in the bed next to mine.<span style="mso-spacerun: yes;"> </span>She has stomach cancer.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>I didn’t know what to say.<span style="mso-spacerun: yes;"> </span>She was having a bad day – a bit teary and
down.<span style="mso-spacerun: yes;"> </span>Hell, if I was given three weeks I
would be crying all day, every day.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;">
</span>This brave and incredible woman has three weeks to live and she is
asking me these questions… It was humbling, humbling, humbling.<span style="mso-spacerun: yes;"> </span>I asked her the same questions, after
deciding it was more respectful to ask her outright what I wanted to know about
her condition.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I told her that my greatest fear is my children developing
MS.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At the end of my infusion all I could do was hug Abby.<span style="mso-spacerun: yes;"> </span>I couldn’t make her cancer disappear, not
even a little bit.<span style="mso-spacerun: yes;"> </span>I told her would see
her in four weeks’ time.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>She was hopeful, saying she’d outlived one
time limit already.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A week later I went into my local SKG to ask for my MRI
report.<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>What if the Tysabri
wasn’t working, what if I had to change my medication again, what if… so many
what if’s.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At home I put the envelope on the bench and tried to ignore
it.<span style="mso-spacerun: yes;"> </span>But it eventually its calling wore
me down.<span style="mso-spacerun: yes;"> </span>I am a need to know person.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>So I sat down and opened the
envelope.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Ha… and that’s it for now. <span style="mso-spacerun: yes;"> </span>Got to pick up my little darling from day
care.<span style="mso-spacerun: yes;"> </span>Check back in a few days and I’ll
tell you more about what happened!! </div>
Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com9tag:blogger.com,1999:blog-9214836190058278976.post-3754356348703313962012-11-13T15:26:00.000+08:002012-11-13T15:26:19.738+08:00(Kind of Deconstructed) Raw Apple Pie And Tysabri Infusion No. 5<!--[if gte mso 9]><xml>
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So here is my raw apple pie recipe I promised last time I posted... well
it's not "mine" per say; I found it on the net here at <a href="http://rawfoodswitch.com/raw-food-recipes/favorite-raw-spring-recipes-healthy-glowing-skin/" target="_blank">The Raw Foods Witch</a>, so thank you Raw
Foods Witch, I feel appropriately bewitched and enlightened by your
recipe. There is also another great page for making raw fruit pies here <a href="http://www.stevepavlina.com/blog/2009/06/how-to-make-a-raw-fruit-pie/" target="_blank">Steve Pavlina.com</a> if anyone catches
the bug for making delicious raw fruit pies.<br />
<br />
I posted a photo of my first raw apple pie on Facebook and a cheffy friend
of mine suggested that it was a "deconstructed" apple pie. How very
buzz-word of him and he would know of course because he is a chef, but I needed
to look up exactly what that meant. I like this definition best,
deconstructed dishes take the foods that are normally combined in the dish,
change their forms, and then plate them together in a different way. It's not
just about taking the dish apart, but putting its elements back together.
So this raw apple pie is only kind of deconstructed, as it replaces the pastry
with nuts, which isn't in the definition. Nuts are a squillion times better for you anyways. Check it
for yourself.<br />
<br />
Raw Apple Pie<br />
<br />
For the crust, you will need: <br />
<br />
2 cups of brazil and pecan nuts<br />
1 cup of fresh pitted dates (these can be substituted with dried apricots,
figs or raisins etc)<br />
1/2 teaspoon of cardamom<br />
1/4 teaspoon of nutmeg<br />
A pinch of sea salt<br />
<br />
Place the nuts in a food processor and process until you have small
crumbs. Add in the dates and spices and process until the mixture is well
combined and in very small crumbs. (I like to process my nut mix until it
is dough like, because it is easy to mould, but you might like yours more
crumbly and if this is so, process less - experiment!) Have a taste now to
check your spice levels, I love cardamom so I usually add more. Press the
nut mixture into a 22cm diameter pie tin and place in freezer until firm.<br />
<br />
For the filling, you will need:<br />
<br />
6 large apples (if not large add extra)<br />
2 tablespoons of lemon juice, and a little extra<br />
1 cup of fresh dates<br />
<br />
Peel and slice 4 of the apples and put them in a bowl with some lemon juice to
stop the apples going brown. Cut up the remaining 2 apples and place them
into the food processor with the 2 tablespoons of lemon juice and the
dates. Process until smooth. Combine the mixture with the sliced
apples.<br />
<br />
Remove your pie crust from the freezer and arrange your filling evenly in
it. Eat immediately or refrigerate. Your raw deconstructed apple
pie will keep for a few days in the fridge. However it is so yummy you
will want to eat it all at once. My latest Japanese visitor insisted on eating
it for breakfast, even though it doesn't seem all that breakfasty to me, but
who am I to stand in her way... It's pretty darn healthy, even though the
prunes add a whole lot of sugar; all the more reason to eat it for breakfast -
all day to use the energy up.<br />
<br />
Anyways moving right along. I was infused with Tysabri
yesterday. I had a shocking morning in preparation. I forgot my
water bottle and head phones. In weighing my options, I didn't think
anyone on the ward would appreciate me watching a movie without head
phones. I realised I was sans head phones as I was driving past a
friend's home. I gave her a call hoping she would be home, but she was
almost at school with her kids. My heart sank, but then she said just
come by and pick up my keys, go in get the head phones and drop the keys
back. It was a very streamlined event actually and only set me back by 15
minutes. Thanks so much Jacquie. <br />
<br />
By the time I got to the hospital I really needed a coffee, so that set me
back another 10 minutes. After I filled out all the paperwork and booked
my appointment for February, I noted on the receptionist's watch that it was
9.30, half an hour past my slot. I expected to be waiting forever.
I perused the magazines and rather than reading old news decided I would <i>give
in</i> to the lure of Christian. I got my book out and was shocked to be
called straight into the ward. I think I need to be half an hour late
more often.<br />
<br />
I was seated and the elderly gent sitting across from me was surrounded by 4
nurses. He didn't look like he was having fun at all. The nurse who
was attending to me stated, rather than asked, if I would mind if the trainee
nurses could assist. I was like, oh yeah sure, but you know I have difficult
veins, hoping it was loud enough that they would be put off. The reply
was, Merrill is the best person for putting cannulas into veins, you are in
good hands. Yeah right this was the women who stabbed a nerve in front of
my kiddies last time.<br />
<br />
The 3 trainee nurses wandered over and I decided to be chirpy and
generous. You have to start learning somewhere right? Merrill
followed with no intention of doing the cannula herself. Leisha put her
hand up and said she would like to have a go. Everyone examined my veins
and Merrill couldn't understand why no one had successfully put a cannula in my
hand, as they certainly looked good. There was a little bit of banter, but then I acquiesced, sure have
a go why not! Merrill started to give instructions and I thought this is
a little anxiety inducing, put on your head phones and start your movie.
Impatient me said, oh don't be ridiculous doing that will just delay what is
going to happen, just let them get on with it already.<br />
<br />
All merit to Leisha, she followed Merrill’s instruction, ignored my
negativity about hand cannulation and succeeded on her first attempt at putting
the cannula into my hand. No one else has ever done that, I usually get
pricked at least twice and it the hand too, woo hoo! The down side was that
it was horrible listening to Merrill's instruction and more painful than any of
the other places I have had the cannula inserted. I was so glad Lesiha
told me after the fact that I was her second ever cannulation!! <br />
<br />
I remembered yesterday that no one, who is a nurse, wants to intentionally
hurt you (unless you are truly awful I guess!) They are doing their job
and that job in my case, is inserting a cannula into my vein so I can have the
medication I have of my own free will consented to have. What they know
about MS now is that early treatment is imperative for reducing damage, as
damage is occurring regardless of whether there is any activity on your MRI or
not... so you probably need some form of medication from diagnosis. I
find it tedious that some people carry on like pork chops about the medication
they have consented to have to reduce damage and improve their future quality
of life. If you are not happy with your medication - research it, talk to
an informed person about it, seek alternatives, get a second opinion OR learn
to accept it. I figure you can make life easy for yourself and get
on with it, or dilly dally around, annoying the nurses, your neurologist or
your doctor, lengthening the process and making life tougher for
yourself. Ok off my soap box.<br />
<br />
Enjoy the apple pie!<br />
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<![endif]-->Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com6tag:blogger.com,1999:blog-9214836190058278976.post-53838067283998010272012-10-23T16:28:00.001+08:002012-11-13T15:27:39.282+08:00Tysabri and Thesis, Both Begin with T.<!--[if gte mso 9]><xml>
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Canonymous" has given me the little push I needed to get a new post
written. In case you are wondering, check out the comment on my last
post. Thanks Canonymous!<br />
<br />
So what has happened in the months since I last posted. Well I had a
bit of a melt down and decided to defer handing in my thesis. I threw all
my balls in the air, so to speak and had family or uni to left drop... and well it seemed
rather impractical to drop my family so I decided on my thesis.<br />
<br />
I think what happened was in the beginning, my research proposal went back
and forth with ethics, putting me several weeks behind. Then I collected
too much data (albeit rather spectacularly); I interviewed too many teens
and then had to transcribe too many 20-45 minutes interviews, which put me even
further behind. Then I started getting a bit manic and having trouble
sleeping. Then I started to get concerned my stress levels would
adversely affect my new wonder drug, Tysabri's chances of working in the manner
that I would like it to work. That is... halting all new lesions 100
percent!!! <i style="mso-bidi-font-style: normal;">Then</i> I checked my
thesis plan and realised I couldn't really write up a first draft,
including my analysis and lit review in one month even if had no family and no distractions... got all woozy, walked to
school to pick up my daughter in shock, told some friends I thought I needed to
defer and then came home and emailed my husband and supervisors.<br />
<br />
The general consensus was divided in two, as it was in my head; think of
your health and just get the blasted thing done. The tipping point was my
thoughts about Tysabri not working, which my neurologist later tells me, outrageous
levels of stress should not have any implications on Tysabri's efficacy.
But just writing this now has highlighted the fact that MS could take my health
and not return it. Whereas what is another year in the great scheme of
things? If my health was stolen, I wouldn't (to varying degrees) be able
to work anyway.<br />
<br />
So anyways... Tysabri has been treating me well. What I have noticed
is that in the week after my infusion I have copious amounts of energy... well
hmmm, copious?? Um, more than normal. My normal. That peters
out to my normal again, which is not to fatigued levels, which is common in
MS... <span style="mso-spacerun: yes;"> </span>I am lucky on that front.<br />
<br />
I have had a grand total of four infusions. No one has been game to
try inserting a cannula into my hands again, since the first infusion. I
try to drink two litres of water before my 9am appointments so <span style="mso-spacerun: yes;"> </span>I have veins that are plump and ready to be penetrated, which on two occasions, since the first was successful, with only my
last one not being successful. It was a bit of a bugger actually, as it
was during school holidays and my kids came to observe. The nurse was
showing a trainee nurse my veins and poked around for a bit in the same vein
before I smiled sweetly, battered my lashes and said "ouch", when
what I really meant was F**K that last move really F****N killed!!! Of
course I couldn't say any of that because Miss Six is <i>allergic</i> to
needles... By allergic I mean, screams at the top of her lungs until blood
vessels burst in her cheeks at the mere mention of a vaccination. Catastrophically allergic. So ouch
would have to do. I added some cryptic explanation so Miss Six would not
be able to translate it into, shitloads of pain. The nurse kindly
informed her trainee that perhaps she had hit a nerve, which is very painful
and would now try a different location further up my arm!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVGAGRas0PkyEOU9UoPCipmvEaSY6q7Vwr_qE4pXux2qmTOb2sVEVFKMVBUOle-M5xyT_ByZL2lp8Lt2yZGZ8BOLk82e94cMsvS-cE1Nvmw6e49seyiU1Hhc_u-J2JMW5_P7VfrkZR1RQ/s1600/June+July+2012+1001.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVGAGRas0PkyEOU9UoPCipmvEaSY6q7Vwr_qE4pXux2qmTOb2sVEVFKMVBUOle-M5xyT_ByZL2lp8Lt2yZGZ8BOLk82e94cMsvS-cE1Nvmw6e49seyiU1Hhc_u-J2JMW5_P7VfrkZR1RQ/s200/June+July+2012+1001.jpg" width="138" /></a></div>
What else you ask, have I been doing? Well socialising with my family
in a manner that is more than grunting, catching up on housework that is for
sure (for procrastination purposes only), definitely not writing my thesis and
having my hair cut short and lightened! (It's lighter now than the pic to the left). I know I should be writing my
thesis, but I have not even been writing my blog, which on the whole, is fun to
write. I have now broken the spell, so maybe I can start writing my
thesis again now. It would have been due this Friday! How
incredibly horrific would it have been if I had deferred, but kept writing,
only to have it all done by the due date. Yeah well, DREAM ON sweetheart! <br />
<br />
Since my last post I
participated in something called Western Mudd Rush. You can check
out its page here... <a href="http://westernmuddrush.com/" target="_blank">http://westernmuddrush.com/</a>
The video on the home page is from the event I took part in this year. It
was good "dirty" fun and the team I was a part of and it’s camaraderie
was the dog's bollocks! <br />
<br />
Ok. Now I have a favour to ask. During my infusions I have been
watching funny movies on my iPad. Several times people have asked me what
I am watching because I am snickering so much. I like to laugh in such a
serious place... and I hope people get a kick out of me laughing and laugh at
me laughing - surely it lightens the mood, right? (Or gives peeps the
irrits). The problem is I have run out of funny movies to watch.
Can you leave me some suggestions in the comments section please. This
will save me wasting time researching funny movies, instead of writing my
thesis (ha)!<br />
<br />
Oh and I have a little treat for you next post. I am going to write about
my raw apple pie, that some folks have asked after. Cheers xx<br />
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<![endif]-->Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com3tag:blogger.com,1999:blog-9214836190058278976.post-31277745687872057332012-07-31T13:50:00.000+08:002012-07-31T14:00:53.388+08:00Tysabri D.Day... Mostly Uneventful!So a couple of weeks ago, I had my first infusion of Tysabri. The decision to swap my MS medications was made in a meeting with my neurologist that lasted perhaps 15 minutes where I was without my most trusted sidekick, otherwise known as my husband. <br />
<br />
I predicted the change, but I didn't predict it would happen in a matter of days. The previous night I slept for a grand total of 3 hours... so pretty much my head was spinning wildly out of control at the news. I had previously given blood for some research, which tested for the JC virus so this was not a hold up. I could have been admitted for the infusion within 3 days.<br />
<br />
However as my husband, Ryan was on the other side of the country and he was none to pleased that I would one, make this decision alone and two, attend the treatment on my own, I pushed my appointment back an extra 2 days. As there really wasn't a decision to make, no other medications were on offer and the Copaxone was not working, he didn't have any input... although believe me, we rather "passionately" discussed it over the phone. In hindsight I am glad I waited for Ryan to hold my hand... I would have been a sniffling mess without him. We do all of my MS stuff together. He is my hero, voice of reason and my rock. <br />
<br />
So what happened? Well once we made it into the Ivy Suite, we had some paper work to fill out. Ryan filled out all the lines I missed due to distraction. I was given a wristband since I was being admitted for the afternoon. I felt a bit at ends... I wasn't sick, yet I was being admitted. Given the short notice I was slotted into a time not reserved for MS patients. Instead I was with people getting chemo. That certainly helped to put my plight well into perspective.<br />
<br />
Finally after sitting around for an hour, we were ushered into the ward. I got to sit on a very comfortable chair, quite reminiscent of a dentist's chair, except much cosier and without the horror of an approaching drill! My nurse was a lovely young blonde woman, she checked my knowledge about what was happening and I felt like I was in good hands.<br />
<br />
Finally the time came to put in the cannula. I got my arm out ready, no problems, as I've had a million blood tests, given blood, had babies and been jabbed with vaccinations, not to mention injected myself daily for 18 months (or about 547 times). When my lovely nurse reached for my hand I was a bit confused, but not concerned. Apparently they like to put the cannula in your hand because it reduces the risk of pain and damage caused my movement at the elbow.<br />
<br />
After a hot pack was allowed to do its work on my hand. My lovely nurse started with the cannula. She very gently held my hand. I looked away because I really didn't need to see her sticking me with a big pointy thing! After about 5 minutes though, with a little bit of stinging I looked over and asked what was happening. Apparently the veins in my hand had disappeared in fright!! They had collapsed. She tried another vein to no avail.<br />
<br />
Another lovely nurse was enlisted. On her first attempt, all looked good. They pumped in some saline and asked if I was in any pain, because if they weren't in the vein and pumped in saline I would feel it. I questioned them about the pain, as I have quite a high pain threshold and thought well what if the pain I could be feeling I just brushed aside as a stinging sensation that I didn't need to be concerned about. A shaky consensus decided that the cannula was in the vein and nurse number two wandered off. Nurse number one turned up the saline drip and pressed on my vein and then suddenly I knew what type of pain they were talking about. Attempt 3 failed.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNqXBEp7Loqmgaz-twOEAFxUFzbPFibVAIKekATs7FNmpiKk3MBwRQkre8r6bFPxzWnGKOCbRkZxuq4kUJGwo_6j0r9LQJ8eGowdRhqP4qchBrMRQWId8-VPdxErusCh7auIle9msohY/s1600/June+July+2012+059.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNqXBEp7Loqmgaz-twOEAFxUFzbPFibVAIKekATs7FNmpiKk3MBwRQkre8r6bFPxzWnGKOCbRkZxuq4kUJGwo_6j0r9LQJ8eGowdRhqP4qchBrMRQWId8-VPdxErusCh7auIle9msohY/s320/June+July+2012+059.JPG" width="180" /></a>Nurse number one left and nurse number two returned. Note no more "lovely", they were still very lovely, but my anxiety had risen and I was no longer really feeling the loveliness. This time she tried my other hand... still no go. The veins in my hand refused to play. Was I sending them an unconscious signal to be difficult? I'd never had any problems with drips before... and when those were done while having my babies, the nurses took much, much less care.<br />
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHsDZv0kua7cC_gdkM3C0kV9dc6m5JKjiYju_6ikzAdUy2IcmYE2IpdKaZP0RcNtnGKdONrLM7-AGAuIsYt-ZQINv4kJe4BGBB5bqzk97VRAzXLXWZ1qL0lA7BPsAcwUoV1B9vo8RJLSc/s1600/June+July+2012+060.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHsDZv0kua7cC_gdkM3C0kV9dc6m5JKjiYju_6ikzAdUy2IcmYE2IpdKaZP0RcNtnGKdONrLM7-AGAuIsYt-ZQINv4kJe4BGBB5bqzk97VRAzXLXWZ1qL0lA7BPsAcwUoV1B9vo8RJLSc/s320/June+July+2012+060.JPG" width="320" /></a>After a break a completely new nurse arrived. She was Scottish, chirpy and "lovely". She decided against using my hands, instead going half way between my wrist and elbow crease. My nerves had begun to get the better of me... so I was expecting some pain. She asked me to hold my arm up above my head for a minute or so and then bam the cannula was in! No problems at all. Thank god is all I could say... I had started to have visions of them saying, come back tomorrow or you can't have Tysabri at all because we can't get a vein.<br />
<br />
The rest is very uneventful. They started the Tysabri infusion and I felt.... nothing! I sat for 2 hours laughing with my husband watching Bad Teacher on our iPad. I had a couple of toilet stops because I had drunk a litre and a half of water in an attempt to hydrate my veins open.<br />
<br />
When we got home, I felt tired after the experience. Yet I felt well enough, so we went out for dinner with the kids anyway.<br />
<br />
Over the following week, I noticed that I felt incredibly fatigued (along with some major bruising on my hands). I am not sure if the fatigue was the work of the Tysabri or all the late nights I was having and allowing myself to be tired after a week of my husband being away. It didn't really feel like normal tiredness, but time will tell, as there is only two more weeks until my next infusion.<br />
<br />
So how do I feel about having this major medication infused into my body? Well mentally pretty good considering it has killed people. Right now physically I feel well as well. I feel good about the fact I no longer have to inject Mr C every day, not that I had a problem with injecting myself. I feel really great that I am on a medication that other MS-er's on a Facebook page (<a href="https://www.facebook.com/IhateMS">I Hate Multiple Sclerosis</a>) didn't note any horrible side effect in relation to my inquiring post and that nearly all of them said they had no new lesions, some of them for years. Which means no disease progression - hooray! Do I dare to dream? Soon I hope.Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com1tag:blogger.com,1999:blog-9214836190058278976.post-23472236931354935422012-07-16T13:00:00.000+08:002012-12-14T09:48:20.959+08:00D.Day Tysabri Infusion.Last Wednesday I had an appointment with my neuro. This was as a follow-up to my yearly MRI. As I am highly impatient about these things... a week after my MRI, I went and collected my notes regarding what the MRI found. The comment at the end was, "Several new lesions, at least five, have developed in the hemispheric white matter." Now I have to tell you, this is the most new lesions my brain has developed since the beginning of being MRI-ed! I turned to my husband in the car after reading this and asked, is it unrealistic to think I could have no new lesions in a year... considering I do actually have MS?<br />
<br />
About a month before my MRI, my parents were over for dinner and as they
were going off on an extended escape from winter in Perth. We had a chat
about my upcoming MRI and I remember saying, I think my medication will
change. I hadn't really thought about it until that moment. But I
guess subconsciously, I had been. This was about two months prior to my
neuro appointment.<br />
<br />
My neuro said well, your current medication isn't working, you need a new treatment.. Good old,
Mr C... I bet he thought it was a big joke every day when I injected myself and
he floated around my system being completely useless. My neuro didn't really give me a choice of medication, but he metioned Gilenya, but said it's newer, you have to remember to take it every day, it's pretty immunosuppresant, has some big side effects (lowers heart rate and increases blood pressure among others), has lots of little side effects and because it's new and they don't know the long term effects. So Tysabri it is... it has the best results of all the drugs for MS currently. I think my neuro likes to play it safe with me, as my MS is reasonably mild, he won't put me on more experimental, newer drugs, where risk could outweight benefit. One side effect of Tysabri he mentioned to me was increased UTI's in women. I thought, oh great, fab, just what I need. He went on to say that they did research on this and found that because the women on Tysabri were feeling better they were having more sex and were getting more UTIs as a result... not due directly to the Tysabri! So then I really did think, oh great!<br />
<br />
Looking back... while I never actually thought about the reasons why I
thought I would be changing medication. I had noticed more tingling in
different spots and it was just hanging around... more noticeable I guess. Lhermitte’s
is a daily occurrence on waking for me now. Sometimes I am very fatigued,
heat totally knocks me for six and my brain doesn't work as quickly or cleverly as it used
too. I try my hardest to be calm about these things and not think about
them too much, because it freaks me out and you know what... there isn't much I
can do to stop it from happening. So it's kind of a waste to worry... to
get all worked up and not be able to do anything about it. Well... there is
stuff I can do and I do those things already, like diet, medication and
lifestyle. Well I am kinda failing on lifestyle right now because I am
writing my thesis and it causes me all manner of stress and worry. But I do
try and combat that with exercise, yoga and relaxation.<br />
<br />
So anyways today is the day for my first infusion at the hospital with
Tysabri (or Natalizumab). I feel like I am making a good and informed decision. The medication is
the best that is out there currently and I am JCV (John Cunningham Virus)
negative. I feel a little worried about allergic reactions... I am not a very allergic person, so surely this is weighing in my favour. But I think it is natural to feel worried and most normal people would be feeling concerned about
starting a new, major medication which has caused severe permanent disability
and death in people with the JC virus which has mutated into PML (Progressive
multifocal leukoencephalopathy). <br />
<br />
PML is caused by the JC virus, which is normally present in many people;
it's not an unusual virus at all and causes no symptoms. It is kept under
control by the immune system. Immunosuppressive drugs prevent the immune system
from controlling the virus... and Tysabri is one of these drugs which
specifically can let PML develop. I, luckily do not have the JC virus in my system. However lots of people with the JC
virus choose to take Tysabri, because the benefits outweigh the risks.
The risks become greater if you have previously taken other immunosuppressive
drugs, which is not me. The latest research indicates my risk of
developing PML without having the JCV and no previous use of Immunosuppressive
drugs is < 1 in 111, 111. I think that means I have more chance of
having a car accident (1 in 600) or developing breast cancer (1 in 7) or committing suicide (1 in 100) than getting PML.<br />
<br />
There are other side effects, like liver issues which I will be monitored
for via regular blood tests. I am pretty sure I read that liver issues which
develop due to Tysabri are reversible once Tysabri is stopped. There is
also joint pain, headaches and fatigue. It is also reported on the
internet that it can increase susceptibility to infections. But my neuro
says this is not the case... Tysabri makes you susceptible to a small specific
group of rare illnesses. But I guess I won't know what effect Tysabri will have on me until it's in my system. I have two friends who's treatment is Tysabri and they love it. So that gives me hope. <br />
<br />
Well I have to go now, because I have to change to go off to the hospital. Sorry for any spelling errors or grammar problems, but I can't re-read right now as I am out of time. Any of you who know me, know I like to add in things, like write a post when I have a spare moment so as not to waste any time... but in actual fact I don't really have the time to do anything. Wish me luck. I'll let you know how I go. xx<br />
<br />
Ps, If you are on Tysabri, please leave me a comment with your feelings about it. Ta. <br />
<div class="MsoNormal">
<br /></div>
Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com8tag:blogger.com,1999:blog-9214836190058278976.post-68130520456478121832012-06-21T22:48:00.001+08:002012-06-21T22:48:16.199+08:00Much Requested Kedgeree RecipeSo it seems a bit like I am writing a cookbook right now, right? But I promise I'm not... not yet anyways!!! <br />
<br />
Not too long ago, I was at a family get together which are sadly occurring less frequently these days, where we all brought dishes of food to eat. I brought along my version - the lower saturated fat version, of Kedgeree. A friend first cooked it for me and I requested the recipe from her... so it's only fitting I pass it on to those who have requested it from me. And I'm no sneaky sausage... I haven't left out any ingredients so that my version is always the best... yours will taste just as yummy as mine I promise.<br />
<br />
<b>Original Ingredients</b><br />
<br />
2 eggs <br />
680g smoked haddock fillets, any bones removed<br />
2 bay leaves<br />
170g long grain or basmati rice<br />
salt and freshly ground black pepper<br />
115g butter<br />
1 medium onion (or equivalent spring onions) finely chopped<br />
1 clove of garlic finely chopped<br />
2 heaped teaspoons of curry powder<br />
2 lemons<br />
2 handfuls of chopped fresh coriander<br />
<br />
<b>My Modified Lower Saturated Fat Ingredients</b><br />
<br />
4 eggs - yolks to be removed and fed to your youngest child!<br />
680g orange smoked cod fillets, any bones removed<br />
2 bay leaves<br />
170g long grain rice - cheaper than basmati<br />
Macrobiotic salt (salt which is in it's natural unprocessed state) and freshly ground black pepper<br />
115g of olive oil - not extra virgin as it's unsuitable to heat, experiement with the amount, as you could probably use less - much less, but not none!<br />
1 medium onion finely chopped<br />
5 cloves of garlic pressed through the garlic press - bugger chopping it!! I love garlic btw!<br />
2 heaped teaspoons of curry powder<br />
2 big lemons<br />
3 handfuls of chopped fresh coriander - I love coriander as well!<br />
<br />
<b>Method</b> <br />
<br />
Boil the eggs for 10 minutes. Allow to cool while preparing the rest of the ingredients.<br />
<br />
Put the smoked cod in a frying pan with some water and the bay leaves and bring to the boil. Cover and simmer for about 5 minutes until fish is all cooked. Remove from the pan and when the fish is cool enough to handle, remove the skin and flake the fish into chunks, then set aside.<br />
<br />
Cook the rice in salted water for about 10 minutes then drain. Refresh it in cold water, drain again and put it in the fridge until you need it.<br />
<br />
Warm the oil in a pan over low heat and add the onion and garlic. Allow it to soften, but not colour for 5 minutes. Add the curry powder and cook for a couple of minutes. Add the juice of one lemon. <br />
<br />
Cut the eggs into wedges. If you are concerned about your saturated fat intake, remove the yolks and feed them to your kids, dogs, husband etc or dispose of in the bin... if not proceed with eggs wedges intact!!<br />
<br />
Add the fish and rice to the pan and gently heat through, then add the eggs and coriander stiring gently as not to break up the eggs any further.<br />
<br />
Put into a warm serving dish and serve with the second lemon, which you have considerately cut into wedges. Serves 6 (or 4 with the option of seconds!!) Enjoy.<br />
<br />
It's such a tasty dish... you won't mind all the dishes it creates because there are A LOT... maybe schedule someone else to do the washing up duties!<br />
<br />
Good luck with it. xx<br />Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com2tag:blogger.com,1999:blog-9214836190058278976.post-31501736718052073892012-06-20T13:08:00.000+08:002012-07-04T13:48:03.482+08:00My Wellness Presentation, Apple, Blueberry & Walnut BreadSo about a week ago now I had my first ever Juice Plus Wellness Presentation, a friend of mine, De and I have kinda, sorta gone into business together. As she is the charismatic speaker, she did the nutrition presentation and she did a wonderful job, even if I do say so myself. I am biased, because I love her to bits - she's passionate, energetic and relentless about her nutrition, fitness and health and that of her family and so, in this way (and several others) we are like minded.<br />
<br />
Anyways moving along... I made a cake, from a recipe that I cut out of a magazine and put in my recipe book thinking... hmmm it's quite healthy, but how do I make it into a cake that I could eat, with low saturated fat - ie no eggs and dairy?<br />
<br />
My low saturated fat version was a resounding success because everyone loved it, including my six year old daughter! I experiemented with putting in my left over wet almond meal in it as well, because I really hate throwing all that lovely almond goodness in the bin or feeding it to my (ok, yes - deserving) chooks. I'm not 100% about exact measurements of what I added, but I will give it my best shot ok...<br />
<br />
<b>Here is the orginal ingredients list</b><br />
<br />
2 cups of plain flour<br />
2 tsp baking powder<br />
2 tsp cinnamon<br />
1 cup caster sugar<br />
1 punnet fresh blueberries, or 3/4 cup frozen blueberries<br />
2 peeled, cored and grated green apples<br />
3/4 cup toasted chopped walnuts<br />
125g melted butter<br />
2 lightly beaten eggs<br />
1/4 cup milk<br />
1 tsp vanilla extract<br />
2 tsp demerara sugar<br />
<br />
<b>Here is my ingredients list</b><br />
<br />
1 cup plain flour<br />
1 cup wholemeal plain flour<br />
2 tsp baking powder<br />
2 tsp cinnamon<br />
1/2 cup raw sugar (could even use less, I will next time) <br />
About 3/4 cup frozen blueberries<br />
2 peeled, cored and grated red apples ('cause thats all I had)<br />
3/4 cup broken up raw walnuts (I didn't have time to activate or chop them)<br />
125g olive oil (not extra virgin as its not suitable to heat)<br />
1/4 cup home made almond milk<br />
1 tsp natural vanilla extract (you could use vanilla beans paste)<br />
All the almond meal left from one cup of almonds after making almond milk (make sure there is not a drop of moisture left in the meal)<br />
2 tsp raw sugar<br />
<br />
AND for my egg replacement I did this with vinegar, water and baking powder:<br />
<br />
Mix one tablespoon each of white vinegar and water in a glass. To this add one teaspoon of baking powder and stir well until the mixture blends and finishes fizzing. Then just replace the eggs with it! This can be used when you need to replace more than one egg in your cake recipes... apparently.<br />
<br />
Check out this egg replacement page... http://chefinyou.com/egg-substitutes-cooking/ - it's handy!<br />
<br />
<b>Method with my Ingredients </b><br />
<br />
Preheat oven to 180 degrees celsius (356 fahrenheit).<br />
Light grease (I use canola spray oil) loaf tin (about 10 x 20cm) and line the base with baking paper.<br />
<br />
Mix flours, baking powder and cinnamon in a large bowl together. Add sugar, blueberries, apples, walnuts and almond meal. Remember to reserve some walnuts for the top of your cake.<br />
<br />
In a jug mix together the oil, milk and vanilla. Gently fold into flour mixture until combined.<br />
Add in your egg replacement and gently fold again until well combined.<br />
<br />
Tip mixture into the loaf pan. Top with reserved walnuts and sprinkle on the 2 teaspoons of raw sugar, although if you wanted you could skip the sugar on top.<br />
<br />
Bake for 1 hour and 5 minutes - after this time keep checking every 5 minutes until your skewer comes out clean (I can't remember exactly how long it took with the addition of the wet almond meal).<br />
<br />
Cool in the pan for 5 minutes before turning out onto a wire rack to cool. The recipe says cool completely before scoffing, but it was delicious when still warm.<br />
<br />
I didn't heat the cake on the evening of the wellness presentation, but again the recipe says that the cake is delicious toasted with your favourite topping.<br />
<br />
I'm no chef... but I am not scared to experiment in the kitchen as, for me partaking in a low saturated fat lifestyle there just isn't that many recipes around... What's the worst that could happen? Your kids hate it - so you get the whole lot to yourself or worse still, it's completely unedible and you chuck it in the bin and start again!!! Personally I have never had this happen! Do some research about your experiements - google is your friend and teacher and use your comon sense.<br />
<br />
I have halved the sugar in this recipe and gone for the least processed sugar I had available. You can pretty much half the sugars in all your cake recipes without a problem - at least I have never had any problems. You could use unprocessed honey, maple syrup or any other NATURAL sweetner in its least processed form. DO NOT let me hear that you have used an insecticide artifical sweetner - unless of course you want to die a slow and painful death. No joke - look it up. <br />
<br />
I don't mind using a little sugar in my recipes, because I have made the cake or whatever myself and thus I know what I have put in it. There are no mysterous numbers that we are supposed to believe are food. I am making a huge shift away from processed food - they are killing us and making our kids sick and miserable.<br />
<br />
Ok off my soap box and good luck with your yummy cake and cake experiments. xx<br />
<br />Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-15072650826924320172012-06-07T10:34:00.001+08:002012-06-07T10:35:56.072+08:00Health Information Online, Participants NeededAre you a reader from Western Australia? Do you have teenagers aged 13-17? Do they look for health information online? Yes, yes and yes? Oh my God.... please read below. I need your HELP! <br />
<br />
Hi
friends. As you may know I am currently involved in research as part of
my Honours degree at Edith Cowan University. As an enthusiastic seeker
of health information online, I have decided to explore the experiences
of adolescents aged 13-17 years<span class="text_exposed_show"> old,
living in WA, who have sought health information online. Through
examining where Western Australian adolescents are seeking health
information on the Internet, by means of which devices and understanding
what their experiences are of using the Internet for health
information, this study will deliver information to health services to
provide targeted health messages and improved delivery methods for
health messages to adolescents living in WA. Participants are being
recruited through this blog post, after which I will send
you, the parent or guardian an information sheet and consent forms. If
you allow your son or daughter to participate in the interview and
answer questions about their online health information experiences, they
will be asked to sign a consent form and participate in one to three,
one on one Skype or in person interviews with myself lasting between
20-45 minutes in duration. Your adolescent’s participation is voluntary
and if they choose to participate, they will be free to withdraw or not
answer questions as they see fit. This research has been approved by
ECU’S School of Psychology and Social Science Ethics Subcommittee. Once
the study is completed the data will be stored securely at ECU and will
not have any identifying information about your child. If you have any
queries about this research project, are interested in finding out more
or would like your adolescent to participate please do not hesitate to
contact me by leaving a comment with an email address I can contact you on and I will send you a
thorough information sheet about my research. Thanks for your time.</span><br />
<br />
<span class="text_exposed_show"> If your teen fits this profile, please leave me a comment with an email address, which I will NOT publish. And I will send you an information pack, complete with consent forms. </span><br />
<br />
<span class="text_exposed_show">I have to put it out there that I will be in no way counselling your teen... and I am not interested in the "why" behind why they have looked at the information online, but rather of their experiences of looking for health information on the internet. This can have occurred at school or at home for personal reasons or for school. I have a current Working With Children Check.</span><br />
<br />
<span class="text_exposed_show">If you have any question feel free to leave a comment and email addy and I will answer asap.</span><br />
<br />
<span class="text_exposed_show">Thanks.</span><br />
<br />
<span class="text_exposed_show">Lee-Anne </span><br />
<br />
<span class="text_exposed_show">PS, If you know of anyone who might be interested in taking part who lives in Western Australia, please refer them to this post. Ta. </span><span class="UIActionLinks UIActionLinks_bottom" data-ft="{"tn":"=","type":20}"></span><br />
<span class="UIActionLinks UIActionLinks_bottom" data-ft="{"tn":"=","type":20}"></span><br />
<span class="UIActionLinks UIActionLinks_bottom" data-ft="{"tn":"=","type":20}"></span><br />
<span class="UIActionLinks UIActionLinks_bottom" data-ft="{"tn":"=","type":20}"></span><br />
<span class="UIActionLinks UIActionLinks_bottom" data-ft="{"tn":"=","type":20}"><button class="like_link stat_elem as_link" data-ft="{"tn":">","type":22}" name="like" title="Like this item" type="submit"></button></span>Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com3tag:blogger.com,1999:blog-9214836190058278976.post-26437087514902289052012-05-30T16:59:00.000+08:002012-05-30T17:00:43.229+08:00May PostWell I thought I'd better get a post in for May. Who would have thunk assignments and take home exams would take up all of my brain space... well I did, I think I was just in a state of denial. I love to blog, but it is a hard thing to do when you have already been writing all day. Academic writing also seems to suck the creativity right out of me - slurp!<br />
<br />
But it seems to be worth the creativity been sucked out of me, as for my last assignment about suicide I received 80%. Yay me! <br />
<br />
Right now I am in the participant collecting stage of my honours research. It is quite an anxiety inducing period. What if I don't get any participants... what if I only get a couple of participants... what if I get participants who said they had looked for health information online, but haven't really.... what if my participants don't want to talk to me during the interviews!! Well, those things haven'y happened so I <i>will</i> let them go.<br />
<br />
I read about a girl who was diagnosed with MS at aged 12 today - World MS Day! It made me sad and angry, but also inspired as she was just getting on with her life. I think us older MSers struggle to come to terms with what having MS means more than younger people, who just seem to move on from diagnosis after the inital greiving period. Anyways... I have no scientific proof about what I just wrote, but here is the link to the story. http://www.mamamia.com.au/social/multiple-sclerosis-day-a-brave-and-heartwarming-story-from-an-incredible-woman/ <br />
<br />
Bye for now.Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-40411244101476083072012-04-24T09:04:00.000+08:002012-04-24T09:05:04.477+08:00Back to Sleep Alter Ego - Run Run!!I'm still here. Just busy with uni assignments is all!<br />
<br />
So I am really proud of myself today... yes, even at this particularly
early hour!<br />
<br />
My alter ego woke me up at 5am telling me that I was not at
all motivated to get up and run and that it was toooo cold and that my
ankles hurt tooooo much and that I wa<span class="text_exposed_show">s sooooo tired and
that my circuit was toooooo long! </span><br />
<br />
<span class="text_exposed_show">My alter is getting too much air play these days I must admit. Kinda cheeky that she woke me up so early don't you think? Tends to happen when I have a lot on my plate.</span><br />
<br />
<span class="text_exposed_show">But I dragged myself out of bed at
5.40 and ran for 32 minutes including one small hill and really enjoyed it, because it was cold,
dark, quiet and my ankles didn't hurt! </span><br />
<br />
<span class="text_exposed_show">So take that alter ego. Be banished back into the deep dark depths of my mind, far away from my conscious thought.</span><br />
<br />
<span class="text_exposed_show">How does that work then, telling yourself you can't do it and then you do? </span><br />
<br />
<span class="text_exposed_show">So
what I think is don't listen to the bullshit excuses you tell yourself
and just get out and do that thing that you tell yourself you can't do!
Because you will surprise yourself - without a doubt!</span>Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com2tag:blogger.com,1999:blog-9214836190058278976.post-28005695272196389382012-03-31T16:08:00.000+08:002012-03-31T16:08:08.620+08:00My Mini MeltdownSo it's the end of March and I haven't blogged for over a month... I better get on it then. I must add that although I'm not posting, I am thinking about it all the time. Like the last time I posted I have been very, ridiculously busy at uni. <br />
<br />
Last weekend I had a mini meltdown. My husband woke up on Saturday morning and suggested to my daughter who had just woken up and jumped in bed with us that we would go to Cottesloe Beach and see the Sculptures By The Sea. I had been suggesting this as an expedition for a month, so at first I was like, yeeeeeeeeeeahhhhhhh!!! But then the reality dawned on me that I had a million assignments all baring down on me and I cracked. I ended up going to the beach, but it wasn't without tears and wailing, because I really wanted to be with my kids when they saw the sculptures for the first time, yet I had shitloads of reading to do. At my husbands prompting I comprimised and took some reading to do on the train. It wasn't ideal, but at least I got to do both. I wasn't even paticularly disappointed when we figured out the reason there were no sculptures by the sea, was that the exhibition finished the week earlier.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKX00d7YA5GF_eWhM1ipGsZEVvUsT-ttWlrZnf0OFM6RPQza2FflFcNXn15bfWBQVKrxtPX5H2xL_uZLWntPHLh0yedrPTD6iuua90SKN85bDYn_EHDlV-Jwgv4qOeVgaeUKRL52M4pB0/s1600/March+2012+023.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="137" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKX00d7YA5GF_eWhM1ipGsZEVvUsT-ttWlrZnf0OFM6RPQza2FflFcNXn15bfWBQVKrxtPX5H2xL_uZLWntPHLh0yedrPTD6iuua90SKN85bDYn_EHDlV-Jwgv4qOeVgaeUKRL52M4pB0/s640/March+2012+023.JPG" width="640" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieB-4WSh8PH3vfKGV0N0xJnV2L2J8A6u1s5DLWgNXohL5AAHccmyKRDW7e4d5FjJoxWgVZbew05QCEr1XCUes5uHZxxhN2Nkk5YaHOJQw0Q5V9WTxo-KYGKWzDculmm83drN6fy5zhEOU/s1600/March+2012+019.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieB-4WSh8PH3vfKGV0N0xJnV2L2J8A6u1s5DLWgNXohL5AAHccmyKRDW7e4d5FjJoxWgVZbew05QCEr1XCUes5uHZxxhN2Nkk5YaHOJQw0Q5V9WTxo-KYGKWzDculmm83drN6fy5zhEOU/s320/March+2012+019.JPG" width="180" /></a></div>The result of my mini meltdown was that I went and discussed my predictament with my lovely supervisors (entirely sincere "lovely" there!) I am not 100% sure what made me think I could complete 3 units at uni, be a fulltime mum and wife, play house and look after myself... might have something to do with the encouraging words of the fourth year coordinator at the time of enrolment. But anyways... all those balls in the air... I could see the hole I was about to fall into, I've fallen into it before with study, so I had a pretty good idea that if I kept on going the way I was, I was bound to fall in. My supervisors both said to me, family comes first - drop some units. So, academics are telling me to drop units, put my family first and look after myself - should I do it... yes! And that is what I did. So I am feeling a little more under control and just a little bit in two minds about sitting here writing a post rather than reading for an assignment. <br />
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I have just submitted my research proposal and have decided that I will post the abstract from it for you all to read. The abstract is technical way of saying summary! This is what I have been working on for the last few months. There is a program that the markers may run my proposal through, called Turnitin and if they were to do this my work would come up plagiarised - but at least will be copied from me! Here it is:<br />
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<div class="MsoNormal" style="line-height: 150%; margin-bottom: .0001pt; margin-bottom: 0cm;"><span style="color: #20124d;">In 2011, 95 % of Australian 15-17 year olds accessed the Internet in the previous 12 months (ABS, 2011). Adolescents utilise the Internet for education, recreation and interaction, however they also utilise the Internet to obtain health information (Thurlow & McKay, 2003). The objectives of this research is to ascertain where online Western Australian adolescents are seeking health information, by means of which devices and what their experiences are of using the Internet for health information. A phenomenological qualitative design will be employed within a narrative framework so as to gain an in-depth understanding of the experiences of adolescents who have sought health information online. It is proposed 15-20, 13-17 year olds will be required to participate in oral interviews via online (Skype) video calls, which will be recorded and transcribed. The transcripts will be reviewed and analysed from within an ontological social constructionist perspective. The research will generate understanding of how the delivery of online health messages can be better targeted at adolescents.</span> </div><div class="MsoNormal" style="line-height: 150%; margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="line-height: 150%; margin-bottom: 0.0001pt;">Ta Da. There you have it. What did you think? This is what my year will consist of... researching the online health habits of teenagers. Hooray!!</div><br />
Til next time... stay safe.Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com2tag:blogger.com,1999:blog-9214836190058278976.post-69898694418823694612012-02-28T15:38:00.000+08:002012-02-28T15:38:29.611+08:00I'm Not Lazy Just Overwhelmed!So uni started for me last night and this morning. I am doing two units, Health and Clinical Psychology and Advanced Developmental and Professional Issues in Psychology. Both sound pretty good to me - more practical than other units I have done thus far. I am starting to think, after 4 years, the powers that be at uni think I am serious about becoming a psychologist (finally)!<br />
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But I can tell you this for nothing... I am <i>shitting</i> myself!!!! Two units, with all their reading, assignments, group work, exams and in class talks is freaking me out - not to mention my impending thesis. I have never done so much academic work and run a family before... plus exercise and watering my garden. Oh what about writing my blog? I'm not lazy about posting, just overwhelmed! <br />
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One big, massive, ginormous weight off my shoulders is that I have just about finished my research proposal for my thesis that I will be completing this year. So I can nearly finish having a coronary about it. I am quite proud of myself, because only a a couple of months ago, having received an example of a proposal from my supervisors, I thought I was way, way in over my head and about to drown. However at a plodding pace, I have written it, written it well AND now it is nearly done. Yay me!<br />
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It is normal for me to feel completely overwhelmed and ridiculously stupid at the beginning of semester. I know this, because I have been there before many times. I know this and am making allowances for it this time, ie I am trying not to beat myself up so much. I feel stupid because I haven't learnt the new information yet and I feel overwhelmed because I haven't done the work yet. I just have to get organised - super organised.<br />
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You know what, I can't give up running my family (and home), not that I do it alone. I was surprised when last night and this morning I missed doing the things with my family that I normally would at those times. Maybe surprising is the wrong word, but it was nice to feel that way - all sentimental and stuff. <br />
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I would give up housework if I could afford a cleaner, but wouldn't we all? And how about a personal chef?! Four short words for ya... 1. Buy 2. a 3. lotto 4. ticket!<br />
<br />
I can't give up exercise at the moment either, especially since I have just recently taken up some strenuous exercise. I am planning on doing the "Step Up for MS" event on April 29th. It is a climb of 1096 stairs, up Perth's largest building - Central Park. Yes I am crazy. My hubby inspired me last year when he completed it in about 11 minutes with no training. This is the website http://www.stepupforms.org.au/event-information.html# If you live in Perth, maybe you might like to join me. The more the merrier!<br />
<br />
I can't give up watering my plants or they will die and I'll have nothing pretty and green to look at during Western Australia's long hot summer. Obviously!!!<br />
<br />
You know what I can't give up living a normal life, so study will just have to fit in with my life. After I get back from picking up my daughter from school I am going to write a plan for the next 3 months. It's only three months of being super dooper organised, then I can go back to my relaxed version of organised. <br />
<br />
Or not, because then my thesis will be due! <br />
<br />
As a very clever friend once advised me, baby steps. And if baby steps is what it takes to keep me sane for the next 3 months then baby steps it is.Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-48847586240090797822012-02-11T09:10:00.000+08:002012-02-11T09:10:57.047+08:00Great post<div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;">Check out this post by Travis White, "Everybody's Got Something".</span></div><div style="font-family: Georgia,"Times New Roman",serif;"> <span style="font-size: small;"><br />
</span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"> http://blog.nationalmssociety.org/2012/02/everybodys-got-something.html</span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;">Make of it what you will - everybody's got something... a disease, financial problems, a big public speech to deliver, I dunno - criminal issues, lost someone they love... grieve and deal with your issues for sure, but to quote Travis, "</span><span style="font-size: small;"><span>you’re not a special case. Just get on with it.” </span></span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span><br />
</span></span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span>In my book, you really don't have a choice, face your problems and live or hide and die a slow painful death of self-denial, guilt, self-loathing and probably add a good serving of anxiety and depression on top of that too. Move forward - onwards and upwards.</span></span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span><br />
</span></span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span>The best reward is to realise this... Thanks for the quote again Travis, "</span><span>We all have problems to face but we all have something positive to contribute as well". Perhaps it is as simple as living your life how you want to live it. Perhaps it is winning a Noble Peace prize. Perhaps it is raising lovely children. It could be anything that means you aren't standing still concentrating on your issue or problem. </span></span></div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span>Don't let "it" paralyse you.</span></span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span><br />
</span></span></div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span>Good luck my friends.</span></span></div>Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0tag:blogger.com,1999:blog-9214836190058278976.post-78971761703850546692012-02-02T21:44:00.000+08:002012-02-02T21:44:41.131+08:00Ode to Breastfeeding<!--[if gte mso 9]><xml> <o:OfficeDocumentSettings> <o:AllowPNG/> </o:OfficeDocumentSettings> </xml><![endif]--><!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-AU</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:EnableOpenTypeKerning/> <w:DontFlipMirrorIndents/> <w:OverrideTableStyleHps/> </w:Compatibility> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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</style> <![endif]--> I was once told, by a man I must point out, that I have boobs that a lesbian would like... hmmm go figure - what type of boobs does a lesbian like? (Probably not gonna live that one down am I?) Well I would have never, in my wildest dreams, even considered telling the whole world that in my very private pre-breastfeeding days, but after a grand total of 53 months breastfeeding two children I feel a whole lot more comfortable with my boobs and talking about them. Not that I plan on talking about them now per say, but rather of my experience in using them to breastfeed - in my own ode to breastfeeding if you like!<br />
<br />
Looking back I was probably one of the least likely people to breastfeed babies if it went on how comfortable I was with talking about my girlie bits. Yes those things are attached to my chest but it didn't mean I wanted to talk about them or have a baby latched onto one because that might mean I had to get it out in public.<br />
<br />
I'm not sure what swayed me to breastfeed... I guess ultimately it was falling pregnant that changed my mind. Surely what came out of my body would be better for my future bub than what came out of a tin - no matter how scientifically it was put together. Not to mention much cheaper and a hell of a lot more convenient - at the very least I wouldn't have to get up in the middle of the night, flail around in the darkness trying to make a bottle of correct temperature formula and then later, much later try and fall back asleep. <br />
<br />
I definitely read something put out by The World Health Organisation, that said, breastfeeding for the first two years of life was the best start for baby. A random blow-in clinic nurse later pointed out this may have applied more to third world mothers. However, I had already decided that this would be my aim - two years of breastfeeding. Given what I've already written you would think this was a highly ambitious plan wouldn't you? A big ask for someone who originally didn't think getting her boobs out in public, even with a real purpose was for her in any shape or form!<br />
<br />
So my first teeny weeny baby was extracted from my belly 15 days overdue. It was kind of weird trying to get her to latch onto my boob - blind leading the blind really. I was super tired after the C-section and then the nurse put the baby in the bed with me and I didn't get a wink of sleep at all. Was this what the next 18 years was going to be like? <br />
<br />
I remember while I was in the hospital, I was about to start breastfeeding when my lovely (I mean that sincerely) father-in-law walked in. He kinda just stood there... maybe he thought I was like every other breastfeeding mum, who was used to getting their boobies out in front of anyone... but so early in the peace, I just couldn't get the girls out in front of my husband's father. It just wasn't right!! <br />
<br />
My little Chynna doll was trouble, trouble, trouble on the breastfeeding front. You would think that for something that needed breastmilk to survive that she would figure out pretty quickly what she needed to do to get the milk. But no, not my little Chynna. She squawked and screamed and moaned and fidgeted and woke up like a thousand times during the night. Being first time parents, my husband, Ryan and I assumed she wasn't getting enough milk and so the breastfeeding saga commenced. You might ask if I thought about bottle feeding my little darling and the answer is yes. We tried so hard, but she simply refused to take the bottle, no matter which teat or bottle shape we used or who fed her. She was hell bent on breastfeeding while lamenting it at the same time!<br />
<br />
I remember going to the Breastfeeding Centre at King Edward Hospital with my sister. She was my moral support for getting out of the house with a screaming baby in tow. The appointment was going well and the nice lactation consultant lady was answering all my questions, then she said how about we check your supply. She hooked me up to a heavy duty electric pump with TWO PUMPS - oh the indignity of it all! Luckily by this time I had no shame in getting my boobs out, although I am not sure how my dear sister kept a straight face... maybe she knew I would burst into tears if even a smirk threatened to make an appearance on her face. Milk supply - excellent!<br />
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Luckily at the time I also had an A-M-A-Z-I-N-G clinic health nurse (Michelle). We had a really nice connection and I appreciated what she had to say about babies and life. She never made me feel like a nitwit, as per many horror stories I have heard from friends about their clinic nurses. I remember at one appointment asking, what happens when my boobs run out of milk and the baby is still hungry? She calmly informed me that the humble breast makes milk instantaneously as required, in fact she explained the whole mechanism i.e. a nifty hormone called Prolactin causes your alveoli to take nutrients from your blood supply and turn them into breast milk! So I never feared that my munchkin wasn't getting enough milk ever again. She was just a whingey, fussy baby - who loved the sound of her own racket, that and in hindsight, she may have been suffering silent reflux for the first six months of her life. <br />
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My daughter and I finally managed to get it together and work more as a team after an incredibly trying first six months. I actually started to look forward to night feeds, because it was quiet and I had no pressure to do anything else, like washing anything. I could just cradle my beautiful baby girl, watch her gorgeous face and enjoy her snuggly warmth (unless it was the middle of summer of course!).<br />
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As the two year mark approached, I started to feel quite apprehensive about giving up breastfeeding. I had worked myself down to one feed during the last year, but I wasn't sure how I was going to go or more importantly, how Chynna was going to go with no boobie to settle her at night. Of course, she was fine and never looked back. While I was a little sad, I knew I would breastfeed again. I was also really glad to get my boobs back to myself and the cessation of a feed before bedtime was a big plus because it certainly made that whole routine shorter. I could put my feet up sooner.<br />
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A few years later my bouncing baby boy was extracted from my belly. From the get-go he was a joy - placid, relaxed and easy to feed. For his first feed, I lifted him to my breast and forgot he was a newborn and not a two year old. The nurse gently reminded me about helping him latch on, but he did a pretty good job by himself. I got the <span style="mso-spacerun: yes;"> </span>hang of it again pretty quickly. In the hospital all types of different feeding positions were suggested, yet as before none of them felt comfortable to me. I had a single feeding position in my repertoire and that was the cradle hold.<br />
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Big problems began just days after Mr Sabin came home. He began writhing about in what appeared to be pain, he had an inconsolable cry and worst of all, started vomiting after just about every feed. Not little spit ups either - the entire contents of his stomach would often make an appearance all over me. Luckily it was just milk, but it was warm, gooey and sometimes smelly - so it was highly unpleasant and extremely anxiety inducing. He is the only person who has ever thrown up in my hair - because not even <i style="mso-bidi-font-style: normal;">I</i> have done that.<br />
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So began the search for what was wrong with my newest edition. I googled the problem and came up with reflux. Everyone I suggested this to, had a reason why it was not reflux. I thought I was going out of my brain - I no longer had my original clinic nurse and my relationship with my current nurse was a work in progress. She came to my house and watched me feed Sabin, suggesting he was a piggie or that I had too much milk and that I should phone the Breastfeeding Centre at King Edward Hospital. I did this and they again refuted my claims of reflux and recommended a different feeding position - keeping Sabin more upright and me more reclined to slow the flow of milk. It was awkward to say the least and did nothing to fix my problem.<br />
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I did learn, however that if a lactating mother has a diet too low in fat, her baby will not get enough nutrition from her milk. This set off alarm bells in my head.<span style="mso-spacerun: yes;"> </span>When I was feeding my baby girl, I was on my super low saturated fat MS diet. Maybe she was just continually hungry (and suffering from silent reflux). Hindsight is always twenty twenty! Luckily at this time, that diet was on hold and had been for some time.<br />
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Eventually I got an appointment with the paediatrician, who had seen Sabin while we were in hospital. I made sure I had a list of all reflux symptoms and all of Sabin's symptoms so I could argue my case as I expected to be rebuffed. He looked at me about to read my list and said I can tell you the symptoms of reflux because I have been treating it for twenty years, does your baby have this and he reeled off a list of symptoms. I felt so relieved that he had heard me when so many people hadn't because Sabin didn't do something associated with reflux or did something which meant he couldn't possibly have reflux. Anti-climatically what this all meant was that Sabin started Losec medication and kept breastfeeding. He continued to chuck his guts up on me for the next six months usually at the most inopportune time - like when I was all made up ready to hit the town, or getting Chynna ready for school in the morning or when a friend was holding him - ugly is all I can say! But he was no longer in pain.<br />
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We continued to feed during the night until about the third or fourth month when Sabin just stopped waking up. I also learned that he often wriggled in his bassinet from around 4.30am, but this did not mean he was hungry. Eventually we could no longer deal with all the snuffling and little kitten noises, so we moved him into his own room. <br />
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Before I knew it Sabin and I were down to one feed before bed. I think if he had of been the one to select which feed he kept between the morning and the night feed, he would have picked the morning. He just seemed to feed best in the morning, probably due to hunger, but his concentration span was also longer. I often found at night he would just have one side and then hurry off to see what his sister was doing, leaving me a bit lop-sided. I could have probably said good bye to feeding at this time... but I wasn't ready.<br />
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As it started to approach Sabin's second birthday, I started to think more about “quitting”. My husband was very keen for me to give it away. But I wasn't mentally up for the challenge. Stopping breastfeeding meant that Sabin was no longer my baby, but my growing toddler. And as Sabin was likely my last baby it also meant arrivederci breastfeeding for good. A chapter of my reproductive life - one where my body felt like it was doing what it was meant to be doing was coming to an end.<br />
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It took a good two and a half months of telling Sabin we were going to stop breastfeeding before it occurred. I told myself many times, that this is it - this is the last feed, but the following night I did it again. In the end my husband helped me along by putting Sabin to bed one night before I came home from yoga. He didn't miss me or my boobie juice and Ryan tells me that he counselled Sabin appropriately. So the next night he went without and it just went from there. There were no fireworks on that last night - or anything that made it memorable. I think in some small way I was looking for a perfect end to my breastfeeding era, but perfect is just that - perfect and unattainable.<br />
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So there you go - my ode to breastfeeding. I am very lucky I had such polite feeders - who didn't bite me - thanks my little darlings. <br />
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Lastly I want to add that I totally respect that many mothers choose formula over breast for lots of reasons. I could have easily been that mum myself. I am glad I didn't give up in those first six months - they were daunting and scary times, but the rewards for me in the end were far greater in so many millions of ways than those fleeting emotional states. If you are starting out on your breastfeeding journey, good luck and enjoy!<br />
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PS Sorry regulars (if I have any - how presumptuous of me) I have been writing my research proposal in my spare moments and have not dedicated much time to my blog... apologies I will try harder to do both. <br />
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</div>Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com4tag:blogger.com,1999:blog-9214836190058278976.post-26707430142146881322012-01-09T20:33:00.000+08:002012-01-09T20:33:57.870+08:00MS Cognitive Issues and News Years ResolutionsDuring last year I attended a newly diagnosed session at the MS Society of WA. While I was not newly diagnosed (thank God and for an explanation perhaps look back at this post, http://lumpycustard101.blogspot.com/2011/02/newly-diagnosed-seminar.html) I was new to medication. Being the most conscientious note taking nerd that I know - I took notes and made sure to highlight the fact that the MSWA Occupational Therapy Department did cognitive testing. At the time and still to this day, my brain does not function the way it used to pre-MS. These cognitive issues are also post-babies, as I don't really remember having the cognitive slip-ups I do now back then pre-babies, which was about three year post MS diagnosis. Conundrum? Nope, not in my sometimes sketchy mind. MS equals cognitive dysfunction, especially since I've been getting regular uninterrupted sleep for a year and a half now and those pesky cognitive problems have not disappeared!<br />
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Hearing this piece of information about the Occupational Therapy Department piqued my interested. I was very keen to have some testing done just to prove to myself that I wasn't a complete imbecile (or suffering early onset Alzeheimers) since I was forgetting the simplest of and frequently used words, like, "Can you get the knives and thingos and set the table." Or the next day forgetting half of the movie I had just seen the night before, or perhaps not so easily following a convoluted movie plot. Or worse still, forgetting details of growing up that I previously prided myself on remembering and recalling. I told myself to remember this info because I couldn't use the service immediately as I was about to commence my most feared, fourth year statistics unit at university. I didn't dare undermine my confidence in my brain's ability anymore than was absolutley necessary.<br />
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Lets just clear up what cognition actually is shall we. “Cognition” refers to the mind’s ability to recognize, organize, store, and recall information. MS can impede the parts of the brain whose job it is to perform these tasks. Everyone naturally has different abilities or strengths and weaknesses in cognition, but changes in cognition, however mild, occur in 45 to 60 percent of people with MS. I have read estimates as high as 70 percent and occuring in up to 50 percent of recently diagnosed cases. However only 10 percent of people with MS can expect severe cognitive impairment. Most MS cognitive impairment is not progressive, so while it may feel like we MSers are losing our minds (like stacks of other people minus the MS) we are not and the impairment is usually limited to certain types of cognitive problems like a reduction in mental sharpness, multitasking, processing speed, problems solving and word finding etc. Currently there is no medication to assist specifically with cognitive impairment in MS, although there are some in the early research stages. <br />
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Do those statistics make me feel any better - knowing that so many of us with MS will suffer the same types of cognitive issues? Does it help knowing when I am out with a group of friends and I am doing the talking, but can't remember a word or punch line instantaneously that up to 70 percent of my fellow MSers may be in the same situation? Nope, no siree I still feel like a twat! And I still feel like this around my friends who know I have MS.<br />
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Anyhow when I finished that fourth year stats unit (and did <i>stupidly</i> well at), I called the MSWA Occupational Therapy Department to make an appointment to have some cognitive testing done. It was all really simple and straight forward... certainly nothing to loose any sleep over. The screening tool that was used was the Screening Evaluation for Cognition Impairment (SEFCI), which was designed specifically for peeps with MS. Within it's scope, memory, thinking speed, problem solving and word knowledge were tested. The SEFCI is a standardised test and has a high degree of accuracy in predicting the likelihood of cognitive change.<br />
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My results were all rather positive and did not suggest any significant change in my cognitive functioning as a result of MS. As I was writing the above paragraph, I remembered what was said in a lecture about psychologocal testing (a unit I completed about a year ago) which was that I would no longer be able to be psychologically tested because I would know what to expect. I did know what to expect and I knew the best ways to do some of the tests. Did this affect my results? Surely. But I will take the tact of the manager of Occupational Therapy, which is that, yes I am noticing changes in how I process and recall information, but that these changes are subtle and do not impact on my routine.<br />
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The manager highlighted that being<i> hyper</i> aware of every little thing I forget is not helpful and that <i>everyone</i> forgets things. During a conversation that is flowing rapidly along I wouldn't notice someone forgetting a word or two - in fact I can't recall a conversation where someone else forgot a word. Surprise surprise, I can remember me doing it though! She also notes that being tense and stressed can have a negative impact on cognitive functioning, ie being worried about my ability to perform in a conversation. <br />
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As I have aspirations of being a psychologist I asked the manager what my prospects would be considering I will need to keep up with a clients conversation. It just so happened that a neuropsychologist was visiting MSWA and my results were discussed. The neuropsychologist emphasised recent research that suggests you can help yourself by adopting good "brain health" strategies early and these may help delay MS taking hold of cognitive functioning. There are five strategies and they are pretty generic, common sensey and are probably useful in delaying the normal aging process. Here they are:<br />
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1. Exercise: of the huffing and puffing variety that no one loves, to get extra oxygen into your brain.<br />
2. Mental stimulation: do things that make you think - it could be work related or fun.<br />
3. Immunotherapies (ok so perhaps not this one for delaying the aging process) continue using treatments as recommended by your neurologist.<br />
4. Good nutrition: 5 serves of veggies and 2 serves of fruit.<br />
5. Social supports: spend time building and nuturing relationships. Social participation is essential!<br />
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I would add another one to this - get on top of anxiety, stress and depression as these are also issues that can potentially impact on how you perform cognitively.<br />
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So wanna know what my New Year Resolution is? Stop being super aware of myself forgetting words, because probably no one else really cares except for me. I will try the laugh it off method if I am with friends who know I have MS and also the MS blame game. But if I am not with friends who know I have MS, I will employ good stress managing techniques, like breathing through anxiety or to just bluff my way through a conversation.... I guess it has worked until now. I will try to just let these episodes go, not replay them over in my mind a trillion times and most importantly I am not going to let these minor mishaps stop me from talking. I love talking!<br />
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My second (and last) New Years resolution is a whole lot less complicated... chewing my food!!<br />
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Thanks for reading!Lee-Annehttp://www.blogger.com/profile/13681783112565880436noreply@blogger.com0