Boulevarde Dreaming

Tag: mri

  • 4). We’re off to see the wizard

    4). We’re off to see the wizard

    Tuesday August 29th 2017 (D-Day plus 19)

    I woke up at 4am feeling weird and I lay in bed thinking, for the first time, that maybe I was going to be sicker than I had originally thought. I started doing some online research into living with MS- I am a big fan of Dr Google and I love to read as much information I can find.

    Somehow I stumbled across the website for the Overcoming Multiple Sclerosis program (OMS) and I started reading. I got very excited about the early information that I found about the program which consists of diet, exercise, stress management, sunlight, Vitamin D, Omega 3 supplementation (and when needed, medication) and straight away I thought “I can do this!!”.

    I sent my lovely Brooke a message to cancel my early morning personal training session, (Lots more about my great PT sessions to come later), and I kept reading.

    I thought about staying home to read more but by 7am I decided to get up to go to work and see how my day played out. At this stage we had only told a handful of people about the diagnosis and we had decided that we were not going to make this info public. I was just going to keep up with my usual activities and keep my health issues private- a little different to how things are now!!

    As it turned out this would be the last day that I would be able to get up and go to my fulltime school Psychologist job in this school year (in fact I wasn’t able to ever return to any fulltime position). It was also the last day for months that I would be able to drive myself anywhere.

    It was a usual busy day at school and I had a meeting with a student and her parent in the last period and so I was the last person to leave the counselling offices. I packed up quickly after the meeting, my daughter came down to my office and we drove home chatting, listening to the radio- just an everyday, normal afternoon.

    Wednesday August 30th 2017.

    I woke up feeling dizzy and drunk. The room moved when I stood up and when I went to the toilet this was the first time I noticed that my razor, hanging in the shower, wasn’t behaving itself- it was swinging side to side.  I called in sick to work and spent the day at home thinking I had a virus. I kept reading about the OMS program and I explained a little to Dan about what I was reading and off he went to go and buy some flaxseed oil (for Omega 3 healthy fats) at the supermarket. I decided it was all worth a go! From this day I started on my plant based, whole food diet with seafood and now 8 years later I haven’t looked back.

    Thursday August 31st 2017.

    I walked Daniel to school and then tried to get in to see a GP at our local surgery. At this point I still thought I had a virus and that I would just need a few days off from work.

    As we had just moved to the area I was a new patient and as I hadn’t previously arranged for my medical records to be sent through I wasn’t able to make an appointment. The receptionist gave me some forms to fill in and told me to contact my previous GP for the information to be sent through. All of these things just seemed way too hard for my frazzled little head and I cried all the way walking home and was a mess by the time I got home. I was having trouble focusing on things and even though I could walk in a straight line I felt like I had drunk a bottle of wine. The world in front of me was swaying and slightly blurry. The effort that focusing took was out of this world. I felt like I was in some weird parallel universe where everything was just a bit off kilter.

    When I got home in my distressed little state and Dan saw me, he told me that he thought I was having a relapse. He called my Neurologist’s office and the Dr called Dan back within the hour. The Neurologist agreed that I needed to see him and that it sounded like I needed to be admitted into hospital for a round of steroids and another MRI. (My second MRI in 3 weeks!- remember that first one where I had been thinking that I needed to be able to survive it as I had a thought that I might need more in the future? I sure wasn’t planning to be back in that tunnel so soon.)

    Friday 1st September 2017

    When I look back at this time now I feel like I basically slept through September and it all started today. We were up at the hospital in the morning and after seeing my Neuro I was admitted into St Vincent’s Private Hospital for 5 days.

    I had the MRI in the afternoon- I asked for the eye mask and used my nice slow breathing and I survived the experience again. There are so many places that your mind can go when you are trapped in a confined space with your head clipped into a cage-like coil (you lie down with your head in the bottom half of the coil and they snap the top part in place over your head)- it really adds to the whole claustrophobic effect. I am someone who avoids underground car parks because they feel too confined to me, so the MRI preparation process had me teetering on the edge of panic at times.

    Then I was back to my room to wait for my Neuro to give the OK for the steriods to start and off we went for methylprednisolone round #1. During my stay the nurses kept telling me that a huge hunger would kick in while I was on steroids but this never happened. My face got very flushed and I developed a bit of ‘moon face’ but they were my main side effects while I was in hospital. The best side effects though were waiting for me later in the week when I got home.

    After the first dose of steroids that afternoon my lovely nurse let me go out for a walk and to get a coffee with Dan. I needed Dan to hold my hand nice and tightly while we walked around the busy streets of Darlinghurst. I was a little wobbly and the whole drunk effect was exacerbated by the stimulation overload of noise, smells, people and the busyness of the city (which I usually love!)

    The hospital food to match my new OMS program was amazing and I was eating fresh steamed fish and vegetables, stir fries and fresh fruit. I was also getting used to my almond milk lattes.

    It all seemed OK until it was time for Dan to leave me that first night. I was very brave when I said goodbye but then I realised that it was just me alone in my room and it was scary and lonely and so confronting that I was actually quite sick. The unknown about this speedy progress of MS kept me awake for hours.

    Black hole sun? Supermassive black hole? Neither Dan or my Neuro thought my suggested song choices were funny.

    The next morning Dan returned and my Neuro popped in for a happy little visit. It was the visit that involved what I fondly remember as the ‘Black Hole’ conversation. The Dr explained that yesterday’s MRI showed that there were quite a few new lesions. He explained that he was surprised about this progression and that this wasn’t good news. There were also black holes that had appeared in my brain. Black holes are areas of permanent axon damage where a lesion used to be. They are spots of irreversible brain tissue damage. My poor, poor brain was still copping a continual beating.

    Having an MRI showing black holes (plural!!) is not good news! The brain is amazing and can re-route and create new pathways for the messages to travel around but an increased number of black holes can lead to significant problems. I now send a regular shout out to my brain to say thankyou for  the ability to keep me going everyday while it has been healing and for it’s ability to find new pathways around damaged nerves and to work to remyelinate these damaged areas.

    The Dr explained that it was time to get serious on starting to work on this out of control MS.

    It was time for Tysabri (Natalizumab) power!!

  • 1). Get me out of here

    Tuesday October 31st 2017

    I’m sitting at home on my deck overlooking the lake.

    It is lovely, but I am not meant to be here.

    I am not usually at home at lunchtime on a Tuesday.

    This is not my life.

    Get me out of here.

    I was meant to be working in my usual job as a Psychologist at school today. Seeing students, attending meetings, laughing with my team, talking to staff and having a lunch break where I would eat my sandwich, answer some emails and maybe pop out in the sun for a quick walk around Wollongong Harbour.

    I was supposed to finish my workday and then come home where I would see a couple of clients or supervisees in my new, purpose-built office before heading back down the driveway into our new home for dinner with my husband and my children.

    I am supposed to be busy with a certain level of hecticness that I was used to and that I had been enjoying.

    This is my 9th week of being at home. This wasn’t meant to be how my life goes, but here I am.

    There are parts of this that I am loving and parts which break my heart. Parts which bring me joy and parts that I cry about in the shower. So much of what has happened for me is out of my control but my first instinct was to find some parts that I could control. Parts that I could make choices with and to still feel like I was able to be me.

    I have been told that I need to find a new normal and to say goodbye to the old me as she doesn’t exist anymore. I don’t know about this. I am still her, but my outlook has changed and my perspective is different.

    New normal yes, but I will stick with the original me- Version 2.0.

    I like her.

    August 2017

    I was pretty sure it was MS. I had noticed that the fingers on my right hand were numb and tingly over the past few weeks. I had googled my symptoms and all of the websites kept coming up with MS. The first GP I saw and I raised the possibility of having MS with had me stand on my tiptoes and asked if anyone else in my family had ever had MS. As my answer was no and because I had been able to stay still while I balanced on my toes- he told me that it was unlikely to be MS and for me to come back in two weeks if my symptoms were still there.

    A week later my initial symptoms of tingling and numbness in my right hand had spread down my whole right side. On the morning of August 10, 2017, I was shaving under my arms when I realised that my right underarm was completely numb. I couldn’t feel myself dragging the razor under my arm. Kinda scary really!!

    My daughter had an appointment with our usual GP that morning and I was able to make an appointment for the GP to also see me. Dr G listened to my story about the spreading numbness in my body, we chatted about some photos of my recent wedding and she gave me an MRI request form. She then called the MRI office and was able to get me in for an appointment on the same day. At the time I wasn’t alarmed at the urgency of having an MRI, I was just grateful that she had listened to me.

    I went off to work and did my usual day’s activities- resisting the urge to google MRI’s. I knew vaguely that it was like an X-ray but that I would go into a machine. Looking back I am amazed at how naively I approached this whole day. At 5pm I headed to the local PRP Diagnostic Imaging clinic. I sat calmly waiting to be called and then the technician came out to get me. Let’s call him Dave. I walked through the corridor and he started giving me instructions change out of my clothes for the test.

    When I saw the MRI machine I paled instantly. Dave asked if I had taken a sedative. When I replied ‘No’ he stated that ‘this should be fun’. I was wearing a jersey dress and stockings so he asked that when I went to get changed that I take my bra off and just check that anything that I was left wearing didn’t have any metal zippers and then I could leave my dress and stockings on. He explained that I would be more comfortable in my own clothes.

    As soon as we walked into the room he handed me an eye mask and when I lay down on the scanner bed he told me to put it on. He talked me through the MRI process and assures me that he would be in contact with me through the speakers to let me know how long each part of the MRI would take. He left the room and I felt the bed move and I knew that I was heading in.

    Through parts of the MRI he instructed me to not swallow. Try this at home- spend 2 minutes at a time not being able to swallow and I bet you will fixate on how urgently you need to swallow. I bet you are swallowing right now!

    I have been a Psychologist for 18 years and during this time I have been preaching the benefits of deep breathing, relaxation and meditation. I must admit that up until this precise moment I was a complete fraud as I had never really used these techniques for myself. Of course, I believed that they could be helpful and I had sat with clients while we listened to relaxation exercises but hadn’t ever put this into genuine practice this for myself. I had a moment in the MRI machine where I thought to myself- ‘this is now or never’ and I had a passing thought that I might need to have other MRI’s in the future. It all kicked in and I breathed my way through that first MRI experience. Simply focusing on counting my breaths as I slowly breathed in and out.  I was in the machine for an hour and a half.  I survived.

    On my 30 minute drive home I was thinking about the possibility of whether things were about to change for me. Looking back now I wish I could have made that drive and that whole night stretch on forever. These were some of very last real moments of being carefree before the diagnosis.

    Friday August 11th 2017         D Day

    I had just returned to my desk after lunch (I had eaten my sandwich and had my walk around the harbour) when my phone rang and it was Dr G’s receptionist asking if I could come in to see her today. I made an appointment for the end of the school day.

    When I arrived at the office the receptionist told me that I couldn’t have an appointment with the Dr today as it was her day off. One of the other staff said – ‘No Dr G is coming in for this one’.

    Oh shit.

    We both cried when Dr G told me that the MRI showed 40 lesions on my brain and one on my spinal cord, that I was right and that it was MS. Turns out it was 100% likely that I had MS.

    She gave me a referral to a Neurologist in Sydney and told me that he was on call at St Vincent’s Hospital in Sydney over the weekend and that she had spoken to his registrar who suggested that I attend the ER as soon as possible to receive 5 days of steroid treatment. She and I agreed that I would go home and tell my husband, Dan, about what was happening and to then go to hospital early the following morning. She offered to call Dan for me and she also gave me her mobile number to call her over the weekend as needed.

    I drove home from the appointment via the PRP clinic to pick up my MRI scan films. It is a miracle that I made it home from this epic journey. Driving yourself to an appointment where you may receive a life changing diagnosis is not recommended. I really didn’t want to go home and tell Dan the results and I ignored his calls on the thirty minute drive as I knew that I couldn’t drive and talk to him about this. He was waiting on the driveway when I drove in and I started crying while telling him that it was MS. He could see that this wasn’t great news but didn’t know much about the disease at the time. I explained that we would need to go to Sydney the next morning. That first conversation and that whole night felt surreal.

    Little did we know what was ahead.