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Breakfast Smoothie

I tend to have the same everyday and I love it. What’s your favourite go-to brekky smoothie? Share with us in the comments below.

My Fav Brekky Smoothie

Bsmoothie

Ingredients:

  • 300ml Almond Milk
  • 1 Frozen Banana
  • 1 handful Frozen Mixed Berries
  • 1 tbsp Psyllium Husk
  • 1 handful of Kale and/or Baby Spinach
  • 1 tbsp Rice Malt Syrup
  • 1 tbsp Greek Yoghurt
  • 100ml water

 

 


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Skype Call Doctor Appointments – the way of the future?

If you’ve browsed a little bit of my blogsite or been following previous articles, you may already know that I’ve been in the medical “system” for quite a while, with about 14 years of experience as a patient. It’s not all been bad, I’ve met some great doctors who have really helped me and taught me coping skills when detail with my pain-oriented condition.

Here’s a short intro to my main “care team”:

 

First, I have a GP, my initial point of contact for general issues such as the flu (which if it gets out of hand can escalate into a flare up of my PAN).

Second, is my rheumatologist, making sure I’m on track with tapering down medicines whilst also still in control over my symptoms. I’ve been on prednisone for about a decade now, and with plans to start a family, it’s important that I get my medicines down to a certain dosage and prepare my body for as minimum risk during pregnancy as possible.

Lastly, is my neurologist, from migraines to seizures, I see this specialist once every few months and together we review what works and what doesn’t.

Which leads me to my topic for today’s post…

Can you still benefit from meeting a specialist on skype?

On one hand, you can assume of course that this wouldn’t make sense, in order for a specialist to really ‘know’ what’s going on they need to see you, feel your body; perform a physical examination.

However, if you are able to find a GP that you can trust, you could conduct an appointment with any specialist all over the world. I tried it.

 

Using your laptop with the specialist on one end, and going to a physical location such as your local GP or medical clinic, the specialist can ask questions to that person and they can perform the physical examinations for you. That way the specialist can direct what answers they need, but you also don’t need to drive or worse yet, fly to see someone for what could be just be a 30-minute appointment.

The specialist can give authority to another GP for prescriptions and it can all be done properly as long as it’s through a proper system. Of course, you need to check the specialist’s credentials first, that all is legit. You will also need to make sure your GP is willing to do this with you, and also that the specialist will be paid somehow through an online bank transaction.

 

As the world evolves and things we never thought possible are becoming just that, possible, the idea of a video-chat appointment with a specialist doesn’t sound so crazy. In fact it’s so helpful for those that live in remote areas or those who have trouble with mobility. Going to see a specialist becomes less of a huge deal, and you are also able to touch base more often and really get a real pulse on your condition. You won’t be putting off appointments for months at a time because of the effort of just seeing one.

Another benefit is you have access to more knowledgeable specialists. You don’t have to choose from one of two specialists because that’s all there is in your nearest town. Now, you can be connected with someone who not only specialises for example in rheumatology, but has more experience in your exact condition. Many conditions can be broadly covered under rheumatology, but not all have the same treatment.

 

If the idea of talking to a specialist you never met before bothers you, you can do what many others do and do your first consult in person, with follow ups on Skype. That way you know the person, they’ve also been able to see you at least once so they know what questions to ask your co-ordinating GP at your next teleconsultation.

 

Not only does it save money, it saves time! Scheduled appointments on Skype mean no more waiting out in the hallway, and no more long drives or overnight trips just for a short appointment.

Sometimes you will still need to visit your specialist in person from time to time, but teleconsults will cut down these trips to a lot less.

To find out more, ask your care team their thoughts on this, and you can organise it together.

 

What do you think about teleconsults? Have you tried skype with your GP and specialist?


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My Current Condition Cheat Sheet

My Current Condition Cheat Sheet

For Family & Friends 🙂

 

The last few months have had its ups and downs as I’m sure of all of us have had in our own way. For me it’s always been surrounding health or my ‘condition’ so I thought I’d put together a bit of a ‘cheat sheet’ around the info and research that’s helped me understand all of this and hopefully will help you if you have the same or something similar. It’s confusing, unfamiliar, and I am always learning. I thank you for learning with me and your sensitivity.

 

Many people ask me what I’ve had and I’ve explained it in a roundabout way, somewhat general with some blogs posted (like the ‘The Invisible Visitor’) here and there, so I thought I might just get straight to it for what’s currently going on as my Doctor explained to me…

 

Firstly, introductions:

 

Autoimmune conditions like mine occur when abnormal antibody attack white blood cells, which attach vessel walls and cause inflammation and destruction of the vessel wall. In a nutshell your own immune system is attacking itself.

I have what they call…

Polyarteritis Nodosa involved Systemic & Leukocytoclastic Vasculitis

It’s bit of a mouthful but basically it’s the inflammation of my blood vessels throughout my body which manifests as arthritis (stiff joints that can be hot to touch, red, immobile for periods of time) and also nodules or ‘lumps’ as I tend to call them. Earlier on, it was more obvious in my extremities, trunk and legs – they looked like bruises that would last for weeks. It was a painful time. But I’ve learned how to cope and live a lifestyle that doesn’t trigger them as much as they did before.

This is where it gets a little more complicated. My condition sort of evolved. Most recently in the past couple of years the inflammation has spread its locations and ‘flare ups’ (aka episodes that sort of come out of nowhere) occur also in my brain’s blood vessels which cause seizures.

The kind of seizures I have can be called complex partial, focal, and/or temporal lobe seizures. Patients seem to be “out of touch,” “out of it,” or “staring into space” during these seizures. Patients with complex partial seizures may or may not remember any or all of the symptoms or events during the seizure.

 

My seizure symptoms vary including:

  • forced turning of the eyes/changes in vision/temporary blindness (which can last from a couple of hours to a few days)
  • extreme dizziness/vertigo (You know how people talk about the 6th sense? No, I’m not talking about seeing ghosts, I mean that sense that tells you where you are in space time – bear with me I did include hallucination as a sign but this isn’t it – sort of like your perception – how far the chair is from you, are you standing up or sitting down – yeah that right there, well I feel like I lose that sense – damn it I actually know there’s a term for it but I can’t for the life of me remember it right now, will get back to you on that one – perhaps spatial perception? cognition?)
  • changes in mood or emotion (like in the same second, crying to laughing hysterically)
  • nausea accompanied/followed by extreme vomitting
  • pain at the back of the head behind the ears (well for me it’s always there)I usually don’t remember what happened only the feelings remain – and I’d imagine it feels like waking up after the worse hang over of your life and someone bashed the back of your head with a baseball bat (too imaginative? maybe not…)
  • numbness/crawling sensations
  • memory loss/blackout spells (periods of time lost from memory)/reverts to past childlike behaviour, and/or hallucinations
  • flushed face/extreme sweating
  • rapid heart/pulse

 

What to do if I have a seizure when I’m with you:

  • Stay calm (I know it’s scary but you can do it)
  • Call Tom (lol…but I’m actual quite serious, call him)
  • Remember the actual seizure itself doesn’t last that long only 2-3 minutes, it may take an hour or so for recovery though and I will most probably be out of it, we can recount the random funny or weird things I say later together lol
  • I will look exhausted and won’t have energy to sit up and will lose control of my muscles/tongue also. Put me in a recovery position – where I need to lie on the side of my body. Do not attempt to make me sit up or lie flat on my back.
  • I do not have shakes/convulsions like other seizures you may have witnessed, which is why it is called a complex partial seizure not a grand mal (that my husband has as part of his epilepsy)
  • They end naturally, except in rare cases the brain has its own way of bringing the seizure safely to an end after a minute or so
  • If extreme vomitting keeps going for more that 30minutes – please bring me to the hospital. I have had 4 days before non-stop vomitting – was absolutely horrible, the hospital might not be able to stop the vomitting but its safer to be close by as there are sometime lasting effects from these seizures and one must also be cautious with things that we can’t really understand. I haven’t had a seizure the same way twice if you know what I mean? Only from experience, so far I’ve had about 8; 4 more serious, and 4 which were fine that I could sleep off at home.
  • Remember you cannot stop them. In an emergency, doctors may use drugs to bring a lengthy, non-stop seizure to an end. However, the average person should wait for the seizure to run its course and try to protect the person from harm while consciousness is clouded.
  • Usually when I’m coming out of one, I go crazy for bananas. Don’t ask me why lol I just do. Family and friends tell me I say “I love bananas” alot lol and eat them really slow like they’re the best thing since chocolate!
  • Sometimes I have relapses, so it’s best to let me rest and get home to bed after an initial one has occurred.

 

Medicines & Treatment:

A lot of people have been confused with how my medications aka treatment works. While symptoms may mimic or seem similar to a complicated migraine or other autoimmune conditions, we have found that traditional pain killers, antidepressants (that are used to treat migraines) do not work on me, this is because it does not treat the root cause – which is the vasculitis which causes the seizures. Its important to also know what medicines I take if in case you are with me when I have a flare up and someone may ask you also since I wouldn’t be able to answer.

I have been prescribed immunosuppresive medicine that I need to take over long periods in order to change or as they call them DMARDs (disease modifying anti-rheumatic drugs) and corticosteroids which are anti-inflammatory. So while these might not have an effect on you for a headache or pain relief, on me they do all the difference. These include Imuran (azathiproine) and Norgesic or Celebrex (Celecoxib) an anti-inflammatory. They aren’t for the seizures but the overall autoimmune condition itself.

For seizure activity maintenance I take Trileptal or Endep (switching over every few weeks/months) .

In case of Emergency

Stugeron Forte 75mg (regain balance, anti motion sickness)

Prazole (anti-emetic)

Betahistine 16mg (anti-vertigo)

Arcoxia 90mg (pain relief)

 

The main, consistent medicine I am currently taking is Prednisone, which is raised to 50mg everytime I have a ‘flare up’, ‘episode’ aka ‘trip to the hospital’ and then tapered until I’m at the maintenance dosage of 5-15mg.

There’s a lot of confusion over corticosteroids, mostly because the word ‘steroids’ is in the word. Corticosteroids mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body’s usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions, such as arthritis and vasculitis-induced seizures. Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues. For more info about the difference between anabolic steroids (the one you may be more familiar with) and corticosteroids, read my other blog post about it here.

Thanks for reading and I hope this has helped with your understanding with all of it. Gah a cheat sheet! This is me cutting down lol. Hugs xo


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Corticosteroids

Are the steroids that autoimmune patients are prescribed, the same as those drugs known to be abused in competitive sport?

 

Hi everyone! I was at the hospital the other day, and realized the question posed for today’s blog is one that a lot of people ask. Whether from the patient or even from family & friends, there seems to be a lot of confusion about the word ‘steroids’.

(more…)


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All About Autoimmune Blood Tests

All About Autoimmune Blood Tests

If you have come across this page, either because you were looking for a firsthand experience advice or you’d just like to read more, you’ll learn all about what the blood tests mean when you are diagnosed with autoimmune condition and how each one works. Throughout my experience in the medical world, I’ve had to have a lot of blood tests, so I tried to find out everything I could about why I needed them and what each test meant. While medical books and sites do help in explaining, a lot of the time they use terms that we aren’t familiar with and don’t explain the relevancy to us in the moment. I still have that feeling of apprehension when I get them done, but as time goes by and if you educate yourself more about these tests, they can do a lot to help ease your fears in dealing with these chronic illnesses that are autoimmune related. Remember to always discuss you blood test results with your doctor at each appointment. Obviously I couldn’t include all the tests, there are a lot of others, some won’t apply to others and some will. The following are some that I regularly take and some of the more common tests I take that I found my other autoimmune buddies take too.

The most common autoimmune blood tests you will need to get regularly:

ESR  (Erythrocyte Sedimentation Rate): this is one of the most common tests that doctors will use to measure the level of inflammation in the body, in other words the activity level of your ongoing condition. It measures the viscosity  or rate at how fast your red blood cells cling together, to fall and settle (much like sediment) at the bottom of a test tube over an hour. A high ESR usually means inflammation is present and thus effecting your condition. However, the problem with these tests is that they don’t tell the doctor where the inflammation is occurring or why. The levels which are considered ‘normal’ for a female range between 0-20 and for males 0-15, if you have more don’t worry too much, I’ve seen levels that reach 90 and above and these are usually during major flare ups and can be levelled out in time with the correct medicine. Very high levels like the ones I experienced, are usually an indication that you may be experiencing vasculitis of some kind (an inflammation of the blood vessels). The ESR test is usually a marker that I tend to look for in tracking my progress on new and long term medication. But not all autoimmune conditions are the same so it’s always best to ask your doctor the relevance between ESR and your condition.

CBC/FBC (Complete Blood Count or Full Blood Count): this is one of the most, if not the most, common blood test that all of us have to take. It’s used to find out if you have any, if at all, problems in the body. This is found out by measuring the number of white (WBC) and red (RBC) blood cells, total amount of hemaglobin in your blood, the fraction of the blood composed of red blood cells (hematocrit) and the size of the red blood cells (MCV). All these tests are very important and will give your doctor a full picture of any inflammation or indicators about how your condition is. High levels in RBC can mean a number of things, it can mean dehydration, or kidney function response. Low levels in RBC can mean anaemia, which is a common symptom of autoimmune conditions. It can also be an indicator of deficiencies in vitamins needed by the body like Vitamin B. A lower than normal WBC can be due to the existing fact that you have an autoimmune or vascular disease such as lupus. High WBC in autoimmune patients paradoxically also can indicate that you have an ongoing autoimmune condition. When I talked to my doctor, I found out that RBC was a main indicator in the progress of my disease.

CRP (C-Reactive Protein): Elevated values are consistent with any inflammatory process that is happening in your body. By measure this special type of protein, the pathologist is able to see record inflammations in the body, but like ESR they are not able to be specific enough for any real diagnosis, this is why it is taken along with ESR tests, if they are both positive, then there is a greater chance that yes you have an ongoing autoimmune condition.

ANA (Antinuclear antibody) According to various sources (which have been referenced at the end of this blog for further reading) 95% of people diagnosed with SLE or Lupus have a positive ANA test. However, it has also been found that up to one in ten healthy people without any known autoimmune condition also test positive. The ANA test was one of the first tests I had to take, it is used a screener for autoimmune conditions and can help diagnose these further. There are many types of autoimmune conditions which I’ll talk about in my next health and fitness blog.

If you have just recently been diagnosed, it’s good to know that all these blood tests will be performed in one go, you only need one extraction and routine blood tests are usually scheduled monthly to quarterly of each year. Make sure you keep it up, since it will help give your doctors a better picture of your health. Don’t be afraid of these, as this is just one of the few procedures you’ll have to face if you have an autoimmune condition. Did you know that there are about 80 different kinds of autoimmune conditions? Some people don’t even know they have them. I’m here to tell you, that while the journey can be hard, you can make it, remain positive and know that there are alot of people out there who can give advice and a shoulder to lean on your hard days. In upcoming blogs I’ll be addressing the emotional toll that these conditions oppose on us, and how we can overcome them and continue to live a full life.

If you’d like to learn more about autoimmune conditions, I hope you’ll feel comfortable to follow my blog entries, and also look into joining online communities which have also provided alot of strength to me in hard times:

If you’d like to join a wonderful online community, join “Support for all autoimmune diseases” group, they can be found on google groups and on facebook. You’ll need to email first to be included, but they are always happy to welcome new members. Headed by an amazing woman named Angela, along with some amazing members with equally inspiring stories, you’ll find that you aren’t so alone after all 🙂

29 September 2011: It has been pointed out to me that I didn’t include others such as ANCA etc well I tested negative on them and don’t know much about them, if you have been given tests not on this page, try researching too, its fun to get to know more. Stay positive! 🙂
For more information and explanations about the various blood tests and what they mean, visit: http://www.labtestsonline.org/ the site has a wealth of information and is easy to navigate.