Phew, got to catch my breath.
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.
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.
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.
But I have done it! First year down. Yay me!
Now I have to wait until early March to go back... what will 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.
Cheers!
Wednesday, November 12, 2014
Tuesday, July 22, 2014
Two Years on Tysabri
Last week I saw my neurologist as I had recently had my annual MRI.
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.
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.
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 don't have MS. 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.
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!
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.
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!
Hope you are well xx
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.
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.
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 don't have MS. 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.
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!
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.
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!
Hope you are well xx
Tuesday, July 15, 2014
Friendships.
What
does friendship mean to you?
Dictionary.com
suggests this: the state
of being a friend; association as friends: to
value a person's friendship or a friendly relation or intimacy.
So then I
looked at what the definition was for friend, which turns out is: a person known well
to another and
regarded with liking,
affection, and loyalty.
I’ve been examining what friendship means lately.
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
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...
I understand this is what my friends offer me too,
even though I am not always willing to receive it.
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.
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.
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.
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.
And I have treated this person time and again with
liking, affection and loyalty.
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.
Anyways. What I put out to the cosmos for this person is happiness,
understanding and gratitude. What will be, will be...
Out to the universe.
Out to the universe.
Be happy, be safe, be well.
Sunday, July 13, 2014
You'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.
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.
So please check out the videos here at You've Got This.
Best wishes!
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.
So please check out the videos here at You've Got This.
Best wishes!
Sunday, August 11, 2013
Yoga For Me.
So, I often drive home after a yoga class, in a state of... authenticity. I can't quite explain it any other way. I have found today that trying to capture in words, how I feel after a yoga class is an elusive task which maybe I just don't possess skills for right now. Does everyone feel differently after a yoga class, depending on their experience and their focus? Perhaps - or maybe we all feel the same. I hope so!
I would love to do a yoga class every day to learn to maintain this state for longer periods of time. It is so easy to lapse out of when you stop for petrol, answer the phone or just return from the yoga studio to your everyday life. While I do have a home yoga practice, it is often rushed or interrupted with demands for breakfast. So while I get a lovely stretch, I don't always get the state of mind I am trying to describe... but here are a group of words which is my attempt at describing how I feel during and after a yoga class.
Present.
Stretched and open.
Spacious, open, expansive.
Open mind,
Open heart,
Open thought.
Open to love,
Open to pain.
Moves in, moves out.
Nothing is permanent.
Nothing holds on.
Clear and unhindered.
Purposeful.
Nothing is good, nothing is bad.
It is.
Within.
Boundless.
Soft.
Slow.
Enough.
Breath.
Simple.
Breathe in, breathe out.
Thoughts move in.
Thoughts move out.
Be.
Being.
This is a lovely love song that, while being totally self-indulgent on my behalf, has some pertinent lyrics for my mind while practicing yoga... "stay open". I'm not normally a soppy love song kind of gal, but this song speaks to me right now. Check it out here, Rhye - Open.
I would love to do a yoga class every day to learn to maintain this state for longer periods of time. It is so easy to lapse out of when you stop for petrol, answer the phone or just return from the yoga studio to your everyday life. While I do have a home yoga practice, it is often rushed or interrupted with demands for breakfast. So while I get a lovely stretch, I don't always get the state of mind I am trying to describe... but here are a group of words which is my attempt at describing how I feel during and after a yoga class.
Present.
Stretched and open.
Spacious, open, expansive.
Open mind,
Open heart,
Open thought.
Open to love,
Open to pain.
Moves in, moves out.
Nothing is permanent.
Nothing holds on.
Clear and unhindered.
Purposeful.
Nothing is good, nothing is bad.
It is.
Within.
Boundless.
Soft.
Slow.
Enough.
Breath.
Simple.
Breathe in, breathe out.
Thoughts move in.
Thoughts move out.
Be.
Being.
This is a lovely love song that, while being totally self-indulgent on my behalf, has some pertinent lyrics for my mind while practicing yoga... "stay open". I'm not normally a soppy love song kind of gal, but this song speaks to me right now. Check it out here, Rhye - Open.
Saturday, July 13, 2013
Tysabri Stats and Research; The Good, The Bad and The Ugly!
Just read an interesting blog on Tysabri (Natalizumab) and PML. It had some interesting stats. Thank you Multiple Sclerosis Research Blog. This is a great blog and I would suggest you follow it if you have MS. It presents the research - the good, the bad and the otherwise!
115, 400 patients treated with Tysabri worldwide as of 31st March 2013
372 cases of PML while using Tysabri reported worldwide to 4th June 2013
85 patients who developed PML while on Tysabri have died (23%)
287 patients who developed PML while on Tysabri survived (77%)
Overall incidence of PML 3.13 per 1000 patients using Tysabri
Factors increasing risk of PML: JCV positive, previous immunosuppressant use (IS), Tysabri use > 2 years
Previous IS use approximately 3-4 fold greater risk of PML than patients with no previous IS use
Duration of Tysabri use prior to PML diagnosis 8-94 doses (mean 40 months)
Important to be tested for JCV every 6 months
Tysabri reduces relapse rate by 81%
Tysabri reduces disablity progression by 64%
Greater than 1 in 3 patients have no disease progression while on Tysabri
Here is a PML risk flow chart for your perusal...
So for me, I am Anti-JCV anitbody status negative, I have no complicating factors, therefore my risk of PML is 1 in 10, 000. However I have a friend whose Anti-JCV Antibody status is positive, she has no prior IS use and has been using Tysabri for 25-48 months, therefore her risk of developing PML is 1 in 189.
Moral of the story. Research, research research, assess, assess, assess!! You should be speaking in depth with your neurologist about starting or continuing to use Tysabri. Make him or her earn their payment; they are working for you and your health. But don't start from a blank slate, take in some prior knowledge which you have gained from reading and researching. The decision to commence using Tysabri was one I did not take lightly and I am JCV negative. The benefits of using Tysabri are huge, but so are the risks. I don't have any side effects and love Tysabri, but every time I am being infused with it, I am not worrying about my risk of developing PML, because I know where I stand with it. Good luck MSers - put your glasses on and get researching.
115, 400 patients treated with Tysabri worldwide as of 31st March 2013
372 cases of PML while using Tysabri reported worldwide to 4th June 2013
85 patients who developed PML while on Tysabri have died (23%)
287 patients who developed PML while on Tysabri survived (77%)
Overall incidence of PML 3.13 per 1000 patients using Tysabri
Factors increasing risk of PML: JCV positive, previous immunosuppressant use (IS), Tysabri use > 2 years
Previous IS use approximately 3-4 fold greater risk of PML than patients with no previous IS use
Duration of Tysabri use prior to PML diagnosis 8-94 doses (mean 40 months)
Important to be tested for JCV every 6 months
Tysabri reduces relapse rate by 81%
Tysabri reduces disablity progression by 64%
Greater than 1 in 3 patients have no disease progression while on Tysabri
Here is a PML risk flow chart for your perusal...
So for me, I am Anti-JCV anitbody status negative, I have no complicating factors, therefore my risk of PML is 1 in 10, 000. However I have a friend whose Anti-JCV Antibody status is positive, she has no prior IS use and has been using Tysabri for 25-48 months, therefore her risk of developing PML is 1 in 189.
Moral of the story. Research, research research, assess, assess, assess!! You should be speaking in depth with your neurologist about starting or continuing to use Tysabri. Make him or her earn their payment; they are working for you and your health. But don't start from a blank slate, take in some prior knowledge which you have gained from reading and researching. The decision to commence using Tysabri was one I did not take lightly and I am JCV negative. The benefits of using Tysabri are huge, but so are the risks. I don't have any side effects and love Tysabri, but every time I am being infused with it, I am not worrying about my risk of developing PML, because I know where I stand with it. Good luck MSers - put your glasses on and get researching.
Tuesday, July 9, 2013
Tysabri, You Little Champ!
Last week I had my six monthly MRI. No biggie... my time in the machine wasn't long enough. I had just fallen asleep when all the scanning finished and they pulled me out of the tube. I've gotten very good at falling asleep in the machine, even with all the loud noise.
Today I had my neurologist appointment to go over what the scan had discovered about my brain. (That it is non-existent!) Consciously I hadn't given the outcome much thought. But subconsciously I think my body did. I started to notice that my right leg felt a bit funny. I mentioned it to my husband and he said, you said the same thing before your appointment last time!! Then I pondered whether this meant the Tysabri was no longer doing its job or whether my head was playing tricks on me for a bit of drama and anxiety. In the end, I told myself that I would know soon enough and it wasn't worth worrying about just yet.
The other thing that I did differently this time, is that I did not pre-empt what the neuro had to say. I didn't go and pick up my report early. I was meant to go and pick it up on Friday, but I forgot. I could have picked it up yesterday (Monday) but I thought since my appointment was 24 hours away I could live without knowing the results. Therefore I went into my appointment not knowing what the report said. The down side of doing this was I paid $180 for about 10 minutes with my neuro, not asking about what I had read in my scan report. FYI I did get $150 back from private health insurance.
So what did the neuro say? ALL CLEAR. No lesions, no activity - nothing new to report!!!
This is what the comment section of the report had to say: No significant interval change since 7 December 2012, with no features of PML identified.
PML you ask? Progressive Multifocal Leukoencephalopathy - Tysabri increases your chance of getting PML, a brain infection that usually causes death or severe disability. I think I may have written about PML previously. PML starts out as JC virus (John Cunningham Virus). I don't have the JC virus, but the JC Virus Test is not 100% accurate. A "false negative" result occurs when the test indicates that the JC Virus is not present in your body, when it actually is. This has occurred in a small number of people who have taken the JC Virus Test. And this is why they look for signs of PML, which has symptomology similar to MS, in an MRI.
What does this mean for me now? I continue on my once monthly infusion of Tysabri - it's a lovely three hour break anyway. I don't need another MRI for 12 months, but I do need to see my neuro in six months. I can live with that.
Woo Hoo!!!
Today I had my neurologist appointment to go over what the scan had discovered about my brain. (That it is non-existent!) Consciously I hadn't given the outcome much thought. But subconsciously I think my body did. I started to notice that my right leg felt a bit funny. I mentioned it to my husband and he said, you said the same thing before your appointment last time!! Then I pondered whether this meant the Tysabri was no longer doing its job or whether my head was playing tricks on me for a bit of drama and anxiety. In the end, I told myself that I would know soon enough and it wasn't worth worrying about just yet.
The other thing that I did differently this time, is that I did not pre-empt what the neuro had to say. I didn't go and pick up my report early. I was meant to go and pick it up on Friday, but I forgot. I could have picked it up yesterday (Monday) but I thought since my appointment was 24 hours away I could live without knowing the results. Therefore I went into my appointment not knowing what the report said. The down side of doing this was I paid $180 for about 10 minutes with my neuro, not asking about what I had read in my scan report. FYI I did get $150 back from private health insurance.
So what did the neuro say? ALL CLEAR. No lesions, no activity - nothing new to report!!!
This is what the comment section of the report had to say: No significant interval change since 7 December 2012, with no features of PML identified.
PML you ask? Progressive Multifocal Leukoencephalopathy - Tysabri increases your chance of getting PML, a brain infection that usually causes death or severe disability. I think I may have written about PML previously. PML starts out as JC virus (John Cunningham Virus). I don't have the JC virus, but the JC Virus Test is not 100% accurate. A "false negative" result occurs when the test indicates that the JC Virus is not present in your body, when it actually is. This has occurred in a small number of people who have taken the JC Virus Test. And this is why they look for signs of PML, which has symptomology similar to MS, in an MRI.
What does this mean for me now? I continue on my once monthly infusion of Tysabri - it's a lovely three hour break anyway. I don't need another MRI for 12 months, but I do need to see my neuro in six months. I can live with that.
Woo Hoo!!!
Monday, March 25, 2013
Pre Diagnosis Diary Excerpts Part 2
Here are my diary entries leading up to my diagnosis with MS in late
2003. It is a continuance of my last post. I'm not posting every
entry or even full entries, because that would probably be as boring as batsh*t
to you and I'd like to keep a skerrick of privacy for myself. I would
just like to let others who are going through the process of being diagnosed
know, they are not alone. All of us with MS have been where you are
standing right now... on the precipice of a life changing event over which you
have no control.
25th Nov 2003, "Initial consultation and physical examination could not confirm MS today. Dr T (neurologist) does not know what is causing my problems, thus he is sending me for MRI tests. For some reason I feel better after seeing Dr T. He said he see 3-4 people a day like me. He called to check my abnormal ANA tests and was going to request further tests on my blood, by Dr A (general practioner) had already done so. I'm not even sure what the tests name is or even what they indicate, but both were negative. Dr T seemed pleased. I was petrified this morning and cried in Dr T's office. He spoke about my anxiety and has gotten me booked in for MRIs asap."
"Ryan and I have spoken about my negative attitude. I am going to try and re-frame things with a more positive spin."
26th Nov 2003, “I can't tell what is normal sensation and what isn't. I feel like I am doing everything right and nothing is changing."
"I have sort of pins and needles in my lower back now. Am I making these things up - am I imagining them? I have the MRIs tomorrow morning. Should be an experience! I'm not nervous about doing the MRI, just what they may reveal. Maybe I am just noticing every little sensation now."
1st Dec 2003, "The results of my MRIs came in. Dr T says that I don't have MS. I do have some white spots (lesions) in my brain scans; however they are in the wrong spots for MS. So my symptoms and slightly abnormal ANA tests are unexplained. Dr T stated he was worried prior to the MRIs, but that after he is not. He can't 100% rule out MS because he isn't God. He wants to see me again in 3 to 6 months for a check-up. I am very tired and have been in dispute with Ryan about the outcome. He is very optimistic and hears through optimistic filters. I am less optimistic and hear through my less optimistic filters. I am seeing my psych on Friday."
2nd Dec 2003, "Feeling pretty down. I have these symptoms and no cause. I don't feel like the neurologist was straight with me. Down."
8th Dec 2003, "I have MS. My cervical MRIs showed lesions. We are waiting on the cerebrospinal fluid (CSF) to fully diagnose."
This was my list of questions for Dr T.
1. What can I do to reduce the chance of MS relapses?
2. The role of stress?
3. Is there anything I could have done not to get MS?
4. I have no family history of MS; where did it come from?
5. Does my sister have an elevated chance of MS?
6. What are the chances do any of my future children have of getting MS?
7. Does heat worsen the symptoms or does it make relapses happen?
8. Is it better to have lesions in the neck than brain?
9. Any comments on diet helping MS?
10. Will MS make me susceptible to other diseases?
11. Are there any known triggers for relapses?
12. Weakness of limbs, incontinence, vision issues, please explain.
13. How expensive are the drugs used to treat MS?
14. Does relapse-remitting MS necessarily turn into secondary MS later in life?
15. Will I end up in a wheelchair?
16. Do we need to do evoked potentials?
What happened around this time is that Dr T was concerned about my cervical MRIs and pulled me into hospital for a lumbar puncture (or if you want the terrifying term, a spinal tap!) The lumbar puncture was a horrible experience for me. But along with positive MRIs, positive CFS markers for MS could give me a definitive diagnosis. After a lumbar puncture you have to lay flat for 8 hours and I'm not sure if Dr T was concerned about my mental wellbeing or if he thought CSF test would be positive (or both) but my hospital room was booked for an overnighter.
I remember Dr T coming in, sitting on the edge of my bed and telling me I had MS. I immediately broke down. I'm not sure how he actually left the room because I was inconsolable. He told the nurse to give me a sedative to calm me down and to help me sleep. Ryan came in and was very supportive; we just hugged for an eternity. I also called my close friend, Sandy. She had given me my first book by George Jelinek, as she knew another woman with MS. She also came in to see me.
In those early days, I'm not sure what I would have done if I didn’t have Sandy's understanding. Anxiety, being terrified and devastated on top of knowledge about MS and maybe my complicated thinking style (complicated - so technical!!) are hard for anybody (including me and) including anyone who is also trying to come to terms with their loved ones MS diagnosis. Sandy, luckily for me was (is) a good friend and an experienced counsellor/psychotherapist, who I respect and trusted with my wobbly mental health. I think anyone in my position could do with a "Sandy" in their life. I felt comfortable allowing her to see the entirety of my grief, rather than holding some in just in case she might not be able to cope with the um, depth and utter despair of it.
Ryan was amazing and supportive. Never once did I fear he would run as fast as he could in the other direction, although I would have come to terms with it (and totally understood) if he had. My family tried their hardest, although they knew little about MS, other than stereotypes. My mum blamed herself for it, as mothers do I guess. "What did I do wrong, what could I have done differently?” I was grateful for being able to go to home to my mum and dad's house and lay on a bed and sleep as long as I needed to. They looked after me well during this time.
I told a selected group of close friends about my diagnosis rather than broadcast it willy nilly. I think I did this because I didn't know how my MS would turn out. I told friends who I thought would not leave me in my time of need and who would ask me questions... I couldn't think of anything worse than telling someone and then having days and weeks of silence while they worked stuff out without letting me know how it was going. After the first week, I wanted to talk to my close friends about it. I don't think I could do it without crying though. That didn't come for years!
At the time I was working as a advocate for vulnerable men released from prison. I obviously didn't tell them about it, but I did tell my employers. They were incredibly supportive and told me to take off as much time as I needed. After a couple of weeks though, I was done being at home contemplating MS and my navel.
I was also seeing a psychologist. I have to tell you, even though I had truckloads of support I still needed my psychologist to unload and work through my grief. When people are diagnosed with a chronic or life threatening illness they go through a grieving process akin to when a close friend or relative dies... because their future as you perceived it has died with diagnosis. Whenever I hear or know of someone who is diagnosed with a chronic or life threatening disease I always ask if they are seeing a psychologist. I believe you need to get through the grieving process to move on with your life. This is not to say the process is easy or you don't back and forth through the phases, but a psychologist can make the process tidier for you. Not necessarily shorter, but less time being stuck thus making it more manageable. It is amazing how putting thoughts into sentences can help.
After my original diagnosis, I was very unhappy with Dr T way of dealing with me. He treated me like I was a fragile, delicate petal in a way, perhaps because he was concerned about my mental state. Those of you who know me, know this is not me. However what I needed from him was to be told straight. I talked to him about my concerns and was pointed in the direction of Prof K. I love my current neurologist – weird right? I’ve had him going on ten years now and I don’t see that we will be parting ways anytime soon. He doesn’t sugar coat and he is comfortable with my fright! He is knowledgeable, like a walking talking encyclopaedia. I can ask him something and he will tell me the answer/s past and current in a way that fits with my level of understanding of MS. I used to think he was quite eccentric, but not now and I trust him with my brain. He would not be for everyone, but I do recommend him to everyone because I think he is the best in WA. It is so important be happy with and trust your neurologist. There is totally no harm in shopping around to find the right fit... you would for jeans so why not your neurologist?
This final thing I want to write about in this post and my original purpose for putting my experiences out there in the cosmos. Sandy came into my hospital room and I cried... a lot. But I remember saying, even though I was crying and couldn't see my immediate way ahead, I knew everything was going to be alright.
That is a bit hard to explain. I just had a strong sense the grief would pass and I would be ok. I didn't know what the future held, far from it. Every night for at least two years I would go to bed thinking I would wake up paralysed and needing a wheelchair. I had hope this wouldn't happen and a cure would be found. But I just knew everything would return to its place or its new place and I could cope with what life threw at me. Mostly I go through my life thinking like this and I think that if you are diagnosed with an illness or even if you are reading this and you are all squeaky clean and peachy you should be endeavouring to cultivate this way of thinking. You can cope; you just don't know it yet. My good friend Jac told me, God wouldn't give you something you couldn't cope with. I'm not really religious, but I like the sound of this, although it takes the power of coping away from you somewhat. My good friend Travis once told me in reference to a boyfriend I broke up with, one day you will wake up and he won't be the first thing you think of. I applied this to my MS. I really believed these things and they worked for me in my time of need for great personal strength. Find what it is for you and use it.
Well that is it. I hope you enjoyed reading. Good luck if you are awaiting a diagnosis or have just been diagnosed. For all, work on those coping skills, you never know when they will come in handy.
xx
PS I am grateful for and would like to thank the people mentioned in this post. Ryan, Sandy, Jac, Trav, my family and friends, who I may not have mentioned but you know who you are and also, my psych at the time, Christina, Dr T, Dr A and Prof K.
25th Nov 2003, "Initial consultation and physical examination could not confirm MS today. Dr T (neurologist) does not know what is causing my problems, thus he is sending me for MRI tests. For some reason I feel better after seeing Dr T. He said he see 3-4 people a day like me. He called to check my abnormal ANA tests and was going to request further tests on my blood, by Dr A (general practioner) had already done so. I'm not even sure what the tests name is or even what they indicate, but both were negative. Dr T seemed pleased. I was petrified this morning and cried in Dr T's office. He spoke about my anxiety and has gotten me booked in for MRIs asap."
"Ryan and I have spoken about my negative attitude. I am going to try and re-frame things with a more positive spin."
26th Nov 2003, “I can't tell what is normal sensation and what isn't. I feel like I am doing everything right and nothing is changing."
"I have sort of pins and needles in my lower back now. Am I making these things up - am I imagining them? I have the MRIs tomorrow morning. Should be an experience! I'm not nervous about doing the MRI, just what they may reveal. Maybe I am just noticing every little sensation now."
1st Dec 2003, "The results of my MRIs came in. Dr T says that I don't have MS. I do have some white spots (lesions) in my brain scans; however they are in the wrong spots for MS. So my symptoms and slightly abnormal ANA tests are unexplained. Dr T stated he was worried prior to the MRIs, but that after he is not. He can't 100% rule out MS because he isn't God. He wants to see me again in 3 to 6 months for a check-up. I am very tired and have been in dispute with Ryan about the outcome. He is very optimistic and hears through optimistic filters. I am less optimistic and hear through my less optimistic filters. I am seeing my psych on Friday."
2nd Dec 2003, "Feeling pretty down. I have these symptoms and no cause. I don't feel like the neurologist was straight with me. Down."
8th Dec 2003, "I have MS. My cervical MRIs showed lesions. We are waiting on the cerebrospinal fluid (CSF) to fully diagnose."
This was my list of questions for Dr T.
1. What can I do to reduce the chance of MS relapses?
2. The role of stress?
3. Is there anything I could have done not to get MS?
4. I have no family history of MS; where did it come from?
5. Does my sister have an elevated chance of MS?
6. What are the chances do any of my future children have of getting MS?
7. Does heat worsen the symptoms or does it make relapses happen?
8. Is it better to have lesions in the neck than brain?
9. Any comments on diet helping MS?
10. Will MS make me susceptible to other diseases?
11. Are there any known triggers for relapses?
12. Weakness of limbs, incontinence, vision issues, please explain.
13. How expensive are the drugs used to treat MS?
14. Does relapse-remitting MS necessarily turn into secondary MS later in life?
15. Will I end up in a wheelchair?
16. Do we need to do evoked potentials?
What happened around this time is that Dr T was concerned about my cervical MRIs and pulled me into hospital for a lumbar puncture (or if you want the terrifying term, a spinal tap!) The lumbar puncture was a horrible experience for me. But along with positive MRIs, positive CFS markers for MS could give me a definitive diagnosis. After a lumbar puncture you have to lay flat for 8 hours and I'm not sure if Dr T was concerned about my mental wellbeing or if he thought CSF test would be positive (or both) but my hospital room was booked for an overnighter.
I remember Dr T coming in, sitting on the edge of my bed and telling me I had MS. I immediately broke down. I'm not sure how he actually left the room because I was inconsolable. He told the nurse to give me a sedative to calm me down and to help me sleep. Ryan came in and was very supportive; we just hugged for an eternity. I also called my close friend, Sandy. She had given me my first book by George Jelinek, as she knew another woman with MS. She also came in to see me.
In those early days, I'm not sure what I would have done if I didn’t have Sandy's understanding. Anxiety, being terrified and devastated on top of knowledge about MS and maybe my complicated thinking style (complicated - so technical!!) are hard for anybody (including me and) including anyone who is also trying to come to terms with their loved ones MS diagnosis. Sandy, luckily for me was (is) a good friend and an experienced counsellor/psychotherapist, who I respect and trusted with my wobbly mental health. I think anyone in my position could do with a "Sandy" in their life. I felt comfortable allowing her to see the entirety of my grief, rather than holding some in just in case she might not be able to cope with the um, depth and utter despair of it.
Ryan was amazing and supportive. Never once did I fear he would run as fast as he could in the other direction, although I would have come to terms with it (and totally understood) if he had. My family tried their hardest, although they knew little about MS, other than stereotypes. My mum blamed herself for it, as mothers do I guess. "What did I do wrong, what could I have done differently?” I was grateful for being able to go to home to my mum and dad's house and lay on a bed and sleep as long as I needed to. They looked after me well during this time.
I told a selected group of close friends about my diagnosis rather than broadcast it willy nilly. I think I did this because I didn't know how my MS would turn out. I told friends who I thought would not leave me in my time of need and who would ask me questions... I couldn't think of anything worse than telling someone and then having days and weeks of silence while they worked stuff out without letting me know how it was going. After the first week, I wanted to talk to my close friends about it. I don't think I could do it without crying though. That didn't come for years!
At the time I was working as a advocate for vulnerable men released from prison. I obviously didn't tell them about it, but I did tell my employers. They were incredibly supportive and told me to take off as much time as I needed. After a couple of weeks though, I was done being at home contemplating MS and my navel.
I was also seeing a psychologist. I have to tell you, even though I had truckloads of support I still needed my psychologist to unload and work through my grief. When people are diagnosed with a chronic or life threatening illness they go through a grieving process akin to when a close friend or relative dies... because their future as you perceived it has died with diagnosis. Whenever I hear or know of someone who is diagnosed with a chronic or life threatening disease I always ask if they are seeing a psychologist. I believe you need to get through the grieving process to move on with your life. This is not to say the process is easy or you don't back and forth through the phases, but a psychologist can make the process tidier for you. Not necessarily shorter, but less time being stuck thus making it more manageable. It is amazing how putting thoughts into sentences can help.
After my original diagnosis, I was very unhappy with Dr T way of dealing with me. He treated me like I was a fragile, delicate petal in a way, perhaps because he was concerned about my mental state. Those of you who know me, know this is not me. However what I needed from him was to be told straight. I talked to him about my concerns and was pointed in the direction of Prof K. I love my current neurologist – weird right? I’ve had him going on ten years now and I don’t see that we will be parting ways anytime soon. He doesn’t sugar coat and he is comfortable with my fright! He is knowledgeable, like a walking talking encyclopaedia. I can ask him something and he will tell me the answer/s past and current in a way that fits with my level of understanding of MS. I used to think he was quite eccentric, but not now and I trust him with my brain. He would not be for everyone, but I do recommend him to everyone because I think he is the best in WA. It is so important be happy with and trust your neurologist. There is totally no harm in shopping around to find the right fit... you would for jeans so why not your neurologist?
This final thing I want to write about in this post and my original purpose for putting my experiences out there in the cosmos. Sandy came into my hospital room and I cried... a lot. But I remember saying, even though I was crying and couldn't see my immediate way ahead, I knew everything was going to be alright.
That is a bit hard to explain. I just had a strong sense the grief would pass and I would be ok. I didn't know what the future held, far from it. Every night for at least two years I would go to bed thinking I would wake up paralysed and needing a wheelchair. I had hope this wouldn't happen and a cure would be found. But I just knew everything would return to its place or its new place and I could cope with what life threw at me. Mostly I go through my life thinking like this and I think that if you are diagnosed with an illness or even if you are reading this and you are all squeaky clean and peachy you should be endeavouring to cultivate this way of thinking. You can cope; you just don't know it yet. My good friend Jac told me, God wouldn't give you something you couldn't cope with. I'm not really religious, but I like the sound of this, although it takes the power of coping away from you somewhat. My good friend Travis once told me in reference to a boyfriend I broke up with, one day you will wake up and he won't be the first thing you think of. I applied this to my MS. I really believed these things and they worked for me in my time of need for great personal strength. Find what it is for you and use it.
Well that is it. I hope you enjoyed reading. Good luck if you are awaiting a diagnosis or have just been diagnosed. For all, work on those coping skills, you never know when they will come in handy.
xx
PS I am grateful for and would like to thank the people mentioned in this post. Ryan, Sandy, Jac, Trav, my family and friends, who I may not have mentioned but you know who you are and also, my psych at the time, Christina, Dr T, Dr A and Prof K.
Tuesday, February 26, 2013
Pre MS Diagnosis Diary Excerpts Part 1
I remember when my MS diagnosis ordeal began, it was the 11th of November
2003. By most MS diagnosis standards, mine was a walk in the park,
lasting only a few short weeks. Most take months and even years to reach
conclusion. Anyways for this post I am going to "reveal"
extracts from my personal diary for you for some added insight of where my head
was at when I was in the process of being diagnosed. Obviously I
am not adding everything; I need some privacy (some would argue writing a blog
defeats this purpose), as does my husband, but I think you will get the picture
of where I was at in general.
16th Nov 2003, "I may have Multiple Sclerosis, so my doctor, Dr A said on Tuesday. I have semi-numb feet and they have been this way since I started my new job at M approximately six weeks ago. I just thought because I was now standing more and walking for an hour in the mornings that my feet were adjusting from sitting in front of a computer all day.”
“Doctor A said that it would be unlikely I would have MS, but there is a small chance that I do. He said that if his wife was presenting with numb feet he wouldn't send her to the neurologist. I decided it was important for me to know, so that I can make the appropriate lifestyle changes and stop worrying. So I have a neurologist appointment in just over a week.”
“I still feel tremendously scared. I worry about my future, my plans, how I will cope. It is an ugly, debilitating and humiliating disease; well that's how it seems to me. I am scared and upset and worried beyond belief. I am worried the love of my life, Ryan will leave, when it has taken so long to find him. On the other hand I (fortunately) feel healthy and am lucky to have supportive friends, family and Ryan. I am lucky there are so many things I can do to re-balance the unbalance in my body that may be occurring. I have started to read up on MS and there seems to be a lot of research and lifestyle changes and dietary changes I can make to re-balance my immune system."
At this stage I was already reading George Jelinek's book called, Taking Control of Multiple Sclerosis.
From the same date, "I guess it is fear of the unknown that scares me the most... what will happen if I do have MS. I guess like the book says I could see MS (if I have it) as a challenge. It is possible to maintain my health and this is the challenge."
"I don't know if I have MS. I am worrying about things in the future that may not yet happen. It's not time to worry, think about all the expended energy I am wasting by worrying about something I don't even know if I have yet. I don't have MS, I don't have MS, I don't have MS..."
17th Nov 2003, 5.40pm, "I have just finished the MS book by George Jelinek and it has proven to be most helpful... I feel I am prepared to face the neurologist now - I am more educated and more able to understand. I am still scared because I don't know what the future holds, but neither does anyone else.
10.30pm, "Feeling low and worried again... I think I have more symptoms. Part of me freaks out, part of me is rational"
I had a very interesting dream on the 18th of November that I wrote about, but I'm not going to add it in here at the moment, otherwise this will be one massive post. I promise I will write about it soon. I think it gives amazing insight into how my unconscious brain was processing the MS information and emotion overload.
23rd Nov 2003, "My feet are still sort of semi-numb, it's hard to describe. The skin on my legs is sort of sensitive to touch. I haven't been worrying about it as much, which is good. I guess I've gotten used to the limbo of waiting. My neurologist appointment is on Tuesday, less than 72 hours away, thank God."
24th of Nov 2003, "Spoke to Dr A today and I have a slightly abnormal ANA test. This test tests auto-immune response. I had a look on the 'net and there can be a number of reasons for this to occur. It can occur in healthy people (ie a false positive test) or it can indicate you are fighting a virus. And it can, of course mean auto-immune disease. More tests need to be done first."
"Again I am scared and worried for all the reasons I was before. Fear of the unknown, babies, travel, study, course of the disease and Ryan. Of course it is illogical to worry about those things now because they are always the unknown. Nothing has really changed since yesterday."
"Worry. It is such an unproductive emotion. It doesn't achieve anything. It makes me upset and stressed. Life will go on. No one knows the future and that is why I have to stay in the moment."
So those are the first few days leading up to my MS diagnosis. I’m going to add in a few more diary entries about the diagnosis and I am going to get to the point about this little project of adding in diary excerpts regarding my diagnosis soon.
How do you think I was fairing? I think I sounded remarkably composed. Looking back I assumed I was not at all composed, but my diary tells quite a different story… to me anyways. I think I was shitting myself, but I had some amazingly supportive and understanding friends, a fantastic psychologist and an awesomely consistent, unshakeable and optimistic boyfriend, now husband. I think he saved me from imploding.
I know I have been writing in parts of late, but I haven’t got piles of time to pump out a super post and my thinking is that maybe you don’t have hours to read a super post either. Please leave some comments about how you think I was going during my diagnosis… it would be interesting to hear other people’s perspective on this or please tell me about your diagnosis. Writing is cathartic you know!! Until next time… sayonara.
16th Nov 2003, "I may have Multiple Sclerosis, so my doctor, Dr A said on Tuesday. I have semi-numb feet and they have been this way since I started my new job at M approximately six weeks ago. I just thought because I was now standing more and walking for an hour in the mornings that my feet were adjusting from sitting in front of a computer all day.”
“Doctor A said that it would be unlikely I would have MS, but there is a small chance that I do. He said that if his wife was presenting with numb feet he wouldn't send her to the neurologist. I decided it was important for me to know, so that I can make the appropriate lifestyle changes and stop worrying. So I have a neurologist appointment in just over a week.”
“I still feel tremendously scared. I worry about my future, my plans, how I will cope. It is an ugly, debilitating and humiliating disease; well that's how it seems to me. I am scared and upset and worried beyond belief. I am worried the love of my life, Ryan will leave, when it has taken so long to find him. On the other hand I (fortunately) feel healthy and am lucky to have supportive friends, family and Ryan. I am lucky there are so many things I can do to re-balance the unbalance in my body that may be occurring. I have started to read up on MS and there seems to be a lot of research and lifestyle changes and dietary changes I can make to re-balance my immune system."
At this stage I was already reading George Jelinek's book called, Taking Control of Multiple Sclerosis.
From the same date, "I guess it is fear of the unknown that scares me the most... what will happen if I do have MS. I guess like the book says I could see MS (if I have it) as a challenge. It is possible to maintain my health and this is the challenge."
"I don't know if I have MS. I am worrying about things in the future that may not yet happen. It's not time to worry, think about all the expended energy I am wasting by worrying about something I don't even know if I have yet. I don't have MS, I don't have MS, I don't have MS..."
17th Nov 2003, 5.40pm, "I have just finished the MS book by George Jelinek and it has proven to be most helpful... I feel I am prepared to face the neurologist now - I am more educated and more able to understand. I am still scared because I don't know what the future holds, but neither does anyone else.
10.30pm, "Feeling low and worried again... I think I have more symptoms. Part of me freaks out, part of me is rational"
I had a very interesting dream on the 18th of November that I wrote about, but I'm not going to add it in here at the moment, otherwise this will be one massive post. I promise I will write about it soon. I think it gives amazing insight into how my unconscious brain was processing the MS information and emotion overload.
23rd Nov 2003, "My feet are still sort of semi-numb, it's hard to describe. The skin on my legs is sort of sensitive to touch. I haven't been worrying about it as much, which is good. I guess I've gotten used to the limbo of waiting. My neurologist appointment is on Tuesday, less than 72 hours away, thank God."
24th of Nov 2003, "Spoke to Dr A today and I have a slightly abnormal ANA test. This test tests auto-immune response. I had a look on the 'net and there can be a number of reasons for this to occur. It can occur in healthy people (ie a false positive test) or it can indicate you are fighting a virus. And it can, of course mean auto-immune disease. More tests need to be done first."
"Again I am scared and worried for all the reasons I was before. Fear of the unknown, babies, travel, study, course of the disease and Ryan. Of course it is illogical to worry about those things now because they are always the unknown. Nothing has really changed since yesterday."
"Worry. It is such an unproductive emotion. It doesn't achieve anything. It makes me upset and stressed. Life will go on. No one knows the future and that is why I have to stay in the moment."
So those are the first few days leading up to my MS diagnosis. I’m going to add in a few more diary entries about the diagnosis and I am going to get to the point about this little project of adding in diary excerpts regarding my diagnosis soon.
How do you think I was fairing? I think I sounded remarkably composed. Looking back I assumed I was not at all composed, but my diary tells quite a different story… to me anyways. I think I was shitting myself, but I had some amazingly supportive and understanding friends, a fantastic psychologist and an awesomely consistent, unshakeable and optimistic boyfriend, now husband. I think he saved me from imploding.
I know I have been writing in parts of late, but I haven’t got piles of time to pump out a super post and my thinking is that maybe you don’t have hours to read a super post either. Please leave some comments about how you think I was going during my diagnosis… it would be interesting to hear other people’s perspective on this or please tell me about your diagnosis. Writing is cathartic you know!! Until next time… sayonara.
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