Health

Starting on Gilenya

07/01/2019 By Savanna Robinson Leave a Comment

So you’ve had it recommended to you by your neurologist to start treatment for your relapsing remitting multiple sclerosis. You may have been given a few options to look through, with wads of literature with the pros and cons for each medication. But in the end you have chosen to go with Gilenya (Fingolimod). And now you don’t really know what to expect, or prefer to hear personal experiences rather than the booklet from the drug company. This is my journey of what to expect when starting on Gilenya for helping with Relapsing Remitting Multiple Sclerosis. (But remember I am not a medical practioner…this is just my personal experience).

When I saw my MS nurse with my choice about which medication I had chosen to start after my relapse a few months prior, I was given a plastic sleeve with notes to take to my GP about what I was about to start and considerations that would be needed about treating my health in the future. I also had some tests to do before a script would be drawn up. And the final thing. I had to finish breastfeeding my toddler before I could start.

That was probably the most difficult part. Seeing my nurse in April, and finally weaning my toddler in late December. Then it had been so long I had to get the tests redone to be valid.

Before starting Gilenya I had to have blood tests to screen for a number of things, including immunity to Chicken Pox. One of the tests wanted wasn’t available at all pathology centres, so it pays to check that out beforehand.

Then there is the ECG required to get a baseline reading. I finally had my first one where I didn’t have to completely remove my bra and top, which makes me wonder why so many places still insist on that. Most undignified for us ladies.

And lastly an OCT on your eyes as a baseline to check swelling of the optic nerve doesn’t happen.

My GP also sent me to a dermatologist to get a baseline check for skin cancers after reading the literature provided to her and the incidence of skin cancers in the trial.

With all those complete, an authority script to purchase the medication was written up for me. Allow a few days for the chemist to get it in stock as not all keep some in stock unless they have a few patients on it.

I was booked in for an appointment to be monitored for 6 hours with my first dose. (A requirement by the Australian government for it to be on the PBS).

I had been told to expect an ECG before starting, and hourly through the time, as the 5 hour mark was where the heart rate could drop a bit with the first dose.

What I got was briefly seen by doctor who explained how the day went. Told to take my first dose, and the time for 6 hours was started. Then an ECG at the end and the go ahead from the doctor if I could go home. The bit in between was a long boring wait in the waiting room…armed with books and iPhone.

The nurse had forewarned me to be diligent in taking my tablet every day at the same time for at least the first month. If you miss a dose in that beginning part, you have to do the 6 hour observations again. When on for longer than that, missing up to 2 weeks is okay if you get caught out on a holiday.

May your journey starting Gilenya go smoothly! I’m hoping this is a positive thing in my MS journey and that it works well with minimal side effects. So far it’s been good for me for 10 months.

Living with MS – A day in the life of an MSer

Why we should look after our hands.

11/11/2018 By Savanna Robinson Leave a Comment

You may start your day with a rigid beauty regime…cleanse, scrub, moisturise, foundation, colour, lipstick. (There may be even more steps in there, but that’s a kind of basics for some people). But unless you spend the rest of the day in front of a mirror or taking endless selfies, then you really won’t look at that end result many more times again for the day. Your hands meanwhile….you will probably see them countless times! Making your morning cuppa, on the steering wheel on the drive to school, when sitting in yet another meeting, eating your lunch. Your hands are always there within your sight. So why don’t we look after them just as well as we do our faces? Read on for some hand care tips and why we need to look after our hands.

Our hands, like our faces, also need some tender loving care or they will show our age just as much as our face can do when left unpampered. Some of the things they will need are a good exfoliant to remove those dead skin cells, a moisturiser for replacing the moisture that water takes out of the skin and oil to help keep those cuticles and nails hydrated! (Read more about the importance of moisturising here).

And when you’ve finished looking after all that for your hands, why not show off your own personality with some colour on those nails. Pop on some lacquer or wraps for a quick touch, or go for a gel enamel if you have a bit more time up your sleeve. Subtle pinks for those who just like a touch of colour, all the way to outrageous designs and prints for the bold at heart! There is usually always something you will be able to find that expresses who you are.

If doing some fancy designs with your lacquer, this may come in handy to keep it all neat.
Aimeili Liquid Latex Peel Off Tape Odorless Cuticle Guard Polish Barrier Skin Protector For Nail Art 15 Ml 0.5 Fl OZ

So why not treat yourself today! Look after those hands, as they do so much for you…don’t they deserve to be the centre of attention every now and then! I know mine do!

If you’d like to learn more about looking after your hands, why not come follow my Pinterest board on skincare.

Having an MRI scan

09/07/2018 By Savanna Robinson Leave a Comment

If you have Multiple Sclerosis, you are quite likely to need an MRI scan at some point. But what is it, what does it do and most importantly what is it like to have an MRI scan? Read on to learn about this medical imaging technique.

What is an MRI scan?

MRI stands for Magnetic Resonance Imaging. It’s a medical imaging technique that uses strong magnets and avoids exposing the patient to radiation (which we know is bad in large amounts). It is used in medical diagnosis of many conditions such as MS as it can provide images of the body’s organs.

Neurologists like to use an MRI scan to see if there are lesions in the brain and spinal cord of MS patients. And they track if these increase in number whilst patients take their disease modifying treatments. They are also used in other medical conditions where the other imaging techniques are not giving a clear diagnosis.

Aside from the dreaded lumbar puncture, the MRI may be the most feared thing in the diagnosis and treatment of multiple sclerosis. Particularly for those who suffer from claustrophobia. This is because the MRI machine is basically a small tube you lay down in, in a room all by yourself, and have a lot of very loud sounds thrown at you. For those who cannot stand the confined space, most places can offer an MRI with sedation. This is an option I’ve known a few MSers to use, so don’t be afraid to ask for this option if you need it.

Having your MRI scan

When you get to your MRI scan, you will have to fill out a questionnaire (if it hasn’t already been sent in), asking questions about potential metal in your body. You’ll then be asked to put on a hospital gown. And you will be called upon when it’s time for your scan. Which is never EVER on time. If a patient moves during their scan, that sequence needs to be redone, so they do love patients that can keep still for their time and keep them more to time for others.

You’ll lie down on the sliding table that goes into the tunnel and will be handed an alert button for if you are having troubles during the scan and need to get out. Different pieces of equipment may be slotted in around you, to help keep you still, and keep you comfortable during the time (my last scan was about an hour and a half long for brain and spine). You may be given head phones, and the option to listen to music…but in all honesty I’ve never been able to hear any of the music during the scan…just the breaks in between. At some point you may also need a contrast injection, depending on what your specialist has ordered. I know neurologist seem to like this to see if there are new active lesions.

Be prepared for lots of loud banging sounds, like a jack hammer digging up cement right outside your bedroom window. Sequences can range from around 1 minute to about 8 minutes in all the scans I’ve had. The best places will even let you know how long the next one will be, so you get a bit of a breathing (or twitching) space in between. I find that I also get a lot of numbness in my arm holding the emergency alert button. Fortunately I’ve never had to test if my hand will work in that numb state.

And then it will be over. The silence after the scan can seem eerie after such a long period of loud noise. And it’s a relief to feel the table slide back out of the tube and there be someone there to help get you up. It seems that these days most MRI scan results and reports are sent straight to the doctor, so you don’t even have to wait around for the scan to be printed up. Be sure to follow up with your specialist for results of your scan. And that’s pretty much it. Until your next MRI is needed.

What is MS? And what exactly does it feel like?

Living with depression in marriage- Depression and relationships can it work?

12/06/2018 By Savanna Robinson 2 Comments

Being in a relationship with a partner who has depression is tough. Depression and relationships can work, but it takes a lot of work from both people. And depression in marriage can be slightly tougher if you hold the view of being there for your other half through sickness and health seriously. This is my own view on how depression can affect relationships and what it’s like actually being married to someone with depression.

Depression can be a huge thing to admit to with your partner. It’s your brain constantly having dark thoughts, and nothing from your usual life being able to lift you back up out of that darkness. The chemical imbalance of the brain just will not allow any good thoughts in at that time. It can change you from a loving caring partner, to the nastiest piece of work out there. And to a lot of men, that can be so humiliating that they have little control over that.

My husband Steve has chronic depression. He’s had it for over 20 years. And it seems to originate from an incident of being assaulted and being critically injured at that time. Since then he’s been on various medications to help with depression, anxiety and impulse control. He sees various medical professionals that help him in dealing with this condition- psychologist, psychiatrist, and his regular doctor. But quite often he can be forgetful and not attend booked appointments which can lead to a long wait for a new appointment date.

It is chronic depression as it is ongoing and unlikely to be cured by any means. It’s trying to manage the worst of the symptoms and let him live as normal a life as possible. Because some days just getting out of bed itself can be a challenge for someone with depression.

If your partner is on medication, it is so crucial to your relationship that they take it as prescribed by the doctor and take it regularly. This can be hindered by other behaviours at times too, such as not coming home regularly at night (or at all). But if it’s not taken as prescribed, it can’t do its job. This is a big issue with my husband- he’s started medication for impulse control, but it needed a higher dose as wasn’t working well enough. But then he doesn’t come home on time to be taking it and getting enough weeks of it into his system to stop the impulsive behaviours.

It’s important to work together on triggers that make the depression worse. Your partner might not notice the behaviours that lead up to bad episodes, but you certainly will after a few times. Note these down for them to talk about with you or a psychologist, so strategies can be formulated to work on those in the future. Some triggers that might be causing issues are special occasions (birthdays, Christmas, etc), toxic relationships with others, big life events.

You could witness a whole range of behaviours come out due to depression. Ones that are common here are avoidance of talking to me, panic attacks, obsession over things like football and hobbies, gambling, suicidal or bad thoughts and running away to a place to think (or overthink as they tend to do).

Know that times in any relationship can get tough. And with depression, this is probably an absolute guarantee. The statistics of couples staying together with unmanaged depression in the mix can be frightening. When your partner isn’t pulling their weight in your marriage or relationship for an extended period, and exhibiting all sorts of behaviours that are not socially acceptable, you may want to throw in the towel. And many, many people do. Hence why opening up to others about their depression can be so difficult to sufferers. They are afraid of getting close, hurting someone else, and then feeling worse in themselves. And then the cycle repeats itself.

If you do need to step away from the situation (for a few minutes or a permanent break), don’t be afraid of the excuses either. To help support your partner, you need to be looking after yourself too. Don’t let their problems eat away at you and become your problems too. Take time out to relax from managing issues with them. Take care of your own health and the rest of your family. And if it all becomes too much, let them know about it and go talk to someone who can help you decide if it’s in your best interests to stay or go.

But know that if you do stick around with your partner, they are grateful that you can look beyond the illness, the behaviours and love the person they can be. They love that you are a strong person they can depend upon to support them through the difficult times. And maybe you’ll be able to help out others thinking of whether living with depression in marriage is for them.

If you or your partner are showing signs of depression and need some help, here are a few resources available in Australia. Lifeline Australia is a national charity providing all Australians experiencing a personal crisis with access to 24 hour crisis support and suicide prevention services. And Beyond Blue provides information and support to help everyone in Australia achieve their best possible mental health, whatever their age and wherever they live.

Come and see more of my posts about marriage here.

7 different ways to spoil your Valentine without flowers

Having Cataract surgery – a patient’s view with cataracts

29/04/2018 By Savanna Robinson 6 Comments

I just had cataract surgery yesterday on my left eye, for a cataract that’s been there since 2005 when I had glaucoma surgery. It’s been something I’ve been mulling over for a few years. Every medical specialist who looks at my eyes always pointed out the lovely star shaped cataract sitting there, and were amazed that I could actually see through it. So seeing there are probably a lot of others out there waiting to have the same procedure, I thought I’d write a quick post about having cataract surgery – a patient’s view with cataracts. What it’s like to experience it.

What are cataracts?

Cataracts are a clouding of the natural lens of the eye. It’s more common than other eye conditions and the leading cause of blindness worldwide. There are numerous conditions that can cause the formation of cataracts including high myopia, eye surgery, prolonged corticosteroid use, previous eye injury or inflammation. I’ve had all of those, but my optometrist is of the opinion it was caused by the glaucoma surgery.

Deciding on surgery

When you are first deciding to have (or told you need to have) cataract surgery you will be given a lot of literature about the procedure, and possibly even shown a video describing the procedure used by your doctor. It can be a lot of information to take in, and seem a little scary too with some of the risks.

Your eye specialist will take quite a few measurements of your eye/s to check suitability for the procedure they have in mind. And then more measurements for the artificial lens to be ordered. You may be given a choice of a few types of lenses that will replace your natural lens, or you may only be suited to one type. (Upon reflection given my previous surgery and ongoing glaucoma, my doctor decided that lenses fixed for distance vision were best for me).

Having Cataract surgery a patient’s view eye surgery woman with glasses for short sightness before surgery and woman with eye patch after first cataract removed — The morning of surgery. Last moments wearing contacts or prescription glasses.

Surgery Day

On your surgery day you will be required to fast prior to your booked time, due to sedation being used in the procedure. It’s only a light sedation with some local injected around the eye…they don’t want you moving during this delicate procedure. You may be required to finalise some paperwork on arrival.

You then have a nurse see you for preparing you for surgery. I was given a gown over my comfy day clothes and a cap to cover my hair. Then some local anaesthetic drops were placed in my eye. Next a tiny sponge with dilation solution was inserted in my lower lid (apparently my eyes are a bit slow to dilate as they had to put extra in a little later).

After a little wait, I was then put on a surgery bed and was visited by the anaesthetist. A canula was put in one hand, and some sedation administered. After that you get quite a bit groggy. Awake, but not really feeling anything much and wheeled into the surgery.

They tape your other eye closed and you have a surgical drape over your head. But with so much anaesthetic around your eye and the sedation, your eyes really can’t see anything while the surgery takes place. For which I think we’re all thankful. We don’t really want to see all that they’re doing while we’re still awake.

It wasn’t a terribly long operation. Around 30 minutes. Most of the time is spent in the pre and post operation activity.

Post-surgery care

After the surgery had finished, I was wheeled back out and a nurse put some ointment in my eye (which I could not really feel to know if I really was closing it for her) and an eye patch on.

A bit of time waiting there and then I was helped up and out to another room to have some sandwiches (the staple of hospital food). And given my list of post-surgery instructions. Be sure to ask any questions you may have in regards to medications to take after, or other instructions. I take a set of eye drops already for my glaucoma at night, so checked I still took those as usual after my post-operation set of 3 eye drops.

You will need to be driven home by someone else after surgery, as you can’t drive for 24 hours afterwards. If your other eye needs glasses or a contact lens, you can still manage those. I had my right contact lens in (as my myopia is so severe I wouldn’t be able to do anything). But in the evening when I took that out for overnight cleaning, I was able to place my glasses on over the eye patch…enough to see.

All the sedation takes a while to wear off, but afterwards you may need some painkillers. You did just have delicate surgery to your eye after all! I had Panadol in the evening and again in the morning after. So far I haven’t needed anything more. I did find the eye patch most uncomfortable for the night, and didn’t really sleep well with it (though a toddler sharing my bed could have been keeping me more awake too). Next time I may ask for some sleeping tablets to help with that first night. (I’m due to get my right eye done in two weeks time).

Having Cataract surgery a patient’s view eye surgery woman with sunglasses woman after using stinging eyesdrops — It’s quite bright after surgery and those drops do sting for the first few days.

The days after surgery

The next day you may be booked in to go back to the specialist to have the eye patch removed, or be told to remove yourself if your next appointment is more than a day away. I had to remove mine at home, which I did gingerly as it felt like half my hair had got caught on the ends of it. I kept my eye closed for that as was a bit afraid of the result and what the vision would be like. When I had glaucoma surgery my vision had been blurry for a day or more after.

I then dashed off to a darker room to try opening my eye. And was pleasantly surprised at the clarity in the vision from my new lens. But opening that eye in a room with a light on hurt my eye and made it water, so I had to resort to wearing sunglasses inside for half the day. Not something you often get to do.

And it is true that you cannot adjust your sight in that eye with a new lens to be able to read. At first during the day, any writing I looked at I couldn’t make out head or tail about, except that I knew it was writing. Later on as I adjusted to it, I could make out some huge writing on things. But that was it. I’m hoping I won’t have to wait too long after my second operation to get reading glasses, as my jobs heavily rely upon it. Plus the fact I love reading for enjoyment too!

Having Cataract surgery a patient’s view eye surgery woman with reading glasses and before/after eye surgery — Two eyes done now and needing reading glasses to see small print and things on my mobile phone.

The drops I find a pain in the time it takes to do them, 5 minutes apart between each, but only one I find painful when put in the eye. All the rest are easy to do. Luckily after 14 years or so experience with glaucoma drops, and longer wearing contact lenses, I’m quite adept at doing multiple eye drops. If you are not, you may need to enlist someone’s help for the month you have use them.

Follow up visits

Next week I go back for the measurement for the other eye, and my second surgery will be 2 weeks after the first. (It’s not actually removing a cataract, but is replacing the lens as my vision was too great a difference to have nothing done with that eye). At least it shouldn’t be as scary as the first one was…worrying the night before and the wait during the day till my surgery time. I know now having experienced the first one. Hopefully this post has helped explain the procedure from a patient viewpoint and made it a little less scary for you too.

Update

Now that I’ve had both eyes done, the vision is great for distance. I’m still adjusting to the need for reading glasses for small print, and finding the right size for using computers, but a very good result still!

Comment below if you have been considering surgery or had it yourself.

Reference

http://www.allaboutvision.com/conditions/cataracts.htm

What is MS? And what exactly does it feel like?

Reading with infants- tips to make reading with toddlers easier

Caring hands- The 28 day hand moisturizer challenge

09/10/2017 By Savanna Robinson 1 Comment

We all know how important it is for our skin to be moisturised! But how many of us take care to do this every day? Not many I bet! I’m the same. It’s usually only when I’m getting extremely dry hands or rough elbows that I realise I’ve been slack in applying moisturizer.

My dermatologist recommends I use a soap-free hand wash and then apply moisturizer every time after washing my hands. With a toddler around, that’s a huge amount of applications a day! And he also said to wear rubber gloves for any washing activity. That’s an even harder habit to start for me!! But I must admit it does help with the dermatitis I tend to get under my wedding ring.

So how about you join me in a 28 day challenge to have caring hands (not neglected hands)! 28 days of applying a moisturizer to your hands twice a day. Morning and night!

If we do that morning and night for 28 days we should have formed a new habit of caring for our hands (as it takes 21 days of repeating an action to create a new habit). And we’ll have super soft, beautifully smooth hands!

So get out your calendar/diary (or app if you prefer digital) and mark in those two times a day with a check box to tick for the next 28 days. Or download my Caring hands calendar to use.

Then grab your bottles of moisturizer (I know you probably have more than one!) and put it in a place where you will remember it during the day.

This could be your bedside table – do it when you wake and before you go to sleep. Or place next to bathroom sink for when you wash your hands. (My dermatologist said to put one in every place where you will wash your hands). Even pop a small one in your handbag!

Now what type of moisturizer should it be? You want a non-greasy formulation, that is pleasant smelling and won’t have you cursing the idea of putting on moisturizer immediately afterwards. I personally love Nourish from Jamberry! It is so smoothing and the scent is not too overpowering. It’s available in a 4 oz and 8 oz size. I also keep some of the small mini size they had for Mother’s Day in my handbag! If you would like to try a sample to see how great it is, contact me here. But for the 28 day challenge use what you have at home. If you stick to the challenge you will be going through your old stash fairly quickly.

Comment below if you are joining me to have Caring hands- pop in your start day and then come back and let us know how you went after 28 days.

I’ve already applied my first lot! Now to print off my planner, as I need that accountability. Say yes to caring hands!