Sunday, 1 May 2016

Tell Me Your Story: Toya Terry

Photo of Toya Terry
Toya Terry
My name is Toya Terry. I was born in Cincinnati, Ohio and raised there for a short period of time.

I was diagnosed with Systemic Lupus Erythematosus in 1995, and then I moved to California. When I first moved to California my diagnosis was changed to MCTD (mixed connective tissue disease). Since my first diagnosis, I have discovered that I have the factor V Leiden mutation, pulmonary embolism, ITP (idiopathic thrombocytopenia purpura), anemia, arthritis, membranous lupus nephritis and possibly fibromyalgia.

Aside of that I am the mother of a very handsome and vibrant little boy. My life has been extremely challenging since my time as a young girl. But I’ve managed to make the best of it.

I choose to express my hurt, pain and experiences with lupus through poetry. I wrote a poetry book called, "A Piece of Me".

For more information check out my website: www.toydeann.com
 We definitely don't get the recognition that we deserve. I'm hoping that you are able to share this with others in hopes that they will better understand our experiences.  Please share and like my page:  https://www.facebook.com/ToyDeann/?fref=ts



Image:  gingerbread men, all different.  Text: Every story of life wiht lupus is unique.  For World Lupus Day 2016, we're taking the whole month of May to share our stories.



Toya is sharing her story as part of our World Lupus Day activities, which are going through all of May (because life with lupus is too big an issue for just one day.)

Thursday, 28 April 2016

Healthline's Best Lupus Blogs 2016

lupus best blogs badge
Healthline

Sometimes, it is Lupus has made it to Healthline's list of top lupus blogs again for 2016.

To check out the other blogs that made the listing follow the link here: http://www.healthline.com/health/lupus/best-blogs-of-the-year#2

Wednesday, 27 April 2016

Avascular Necrosis of the Bone

I had a question from a lovely lupie yesterday, that sent me searching for an answer.

She had recently been diagnosed with avascular necrosis in her knee, and hadn't heard of it before.

I went to Dr Donald Thomas' The Lupus Encyclopaedia for answers, and it turned out he had a whole chapter on it.

I'm not going to give you his entire chapter here (because that would get me into a whole lot of trouble with copyright laws), but I'll give you a quick summary, and if you want more you can go to the book.

Let's start with definitions: "avascular" means there's no blood supply getting to the area; "necrosis" means death.  Avascular necrosis of the bone can also be referred to as AVN or osteonecrosis. ("Osteo" means bone.)

AVN isn't all that common. About 5% to 10% of lupies will develop it, and those will usually, but not always, be people who've been taking high-dose steroids.  (Yet another element to add to our love-hate relationship with our steroids.)

It's most likely to be in the femur (thigh bone) at the hips, or in knees or shoulders. Many people who get it, will get it on both sides of the body.  If it is in your hip, you would be most likely to feel the pain in your groin.

There are three ways AVN can be treated:

  1. For stage 0 and 1 AVN, joint protection is an option.  Use a walking stick when walking, only do low impact exercises. Lose weight if you need to. See a physiotherapist to develop an exercise routine that protects the damaged area.
  2. Conservative management involves pain control: non-steroidal anti-inflammatories, etc, possibly even opioids, if necessary. Alendronate (an osteoporosis treatment) may also help.  Pain control alone does not stop the AVN spreading. 
  3. For stage 2, 3 or 4 AVN, surgery is the only real option. An orthopaedic surgeon will be needed, to replace the affected joint.


As I said, there's a lot more information in The Lupus Encyclopaedia.  As with everything, don't panic, and please don't just stop taking your steroids just because you read this. This affects very few lupies, and for many of us the benefits of steroids will outweigh the risk. If you are worried, talk about it with your GP or your Rheumatologist.




  Kindle version           Paperback             Hard Cover


Tuesday, 26 April 2016

Consequences

Image: dog in bed asleep. Text: Yes, I did too much. No, I don't regret it.I'm tired, really, really, incredibly, beyond words, tired. It's my own fault, of course.

Another "medically interesting" friend has been for quite some time asking me to go jet skiing with her.

All sorts of things have interfered with getting out, but finally, on Saturday, we managed to do it.

Despite my slipping on the riverbank and having an unexpected swimming lesson, it was a great day.

I covered up, doused myself in sunscreen, and did everything I reasonably could to minimise the damage.  But really, there's no way to go out and do something like that with no consequences.

We had about 40 minutes on the water.  By that time, my back, hips and knees couldn't have stayed in that position any longer.  But it was starting to rain anyway.

On Saturday night everything hurt so much I needed a sleeping pill to get to sleep.  I haven't had any trouble getting to sleep since. Staying awake? That's another matter.

On Sunday I did get to church.  I had four cups of coffee beforehand, and took another with me to help me stay awake through the service, then had an extra cup before I drove home and went to sleep.

On Monday, I managed to get up, and with the help of rather a lot of coffee I did a load of wash, played with my granddaughter for about ten minutes and did some work on the current novel I'm writing for about a quarter of an hour.  Then I went to sleep until my son woke me to tell me to take my lunchtime tablets.  After lunch and tablets I found some appropriate television for sleeping in front of, and slept on the couch for the rest of the day.

It's Tuesday now.  I've been up for two hours.  If I make it to lunch time, I'll consider it a great achievement, because I'm utterly exhausted.

If I told this story to my rheumatologist I'd get his "stop trying to prove you can have a normal life" lecture.  But do you know something?  I think that once in a while, going out and doing something that's fun and is totally outside my normal routine is worth the consequences.  This time the consequence is a few days (OK it might yet turn out to be a couple of weeks) of increased fatigue - which surprised me because I thought I might end up with a lot of extra pain and rashes as well.

I did it.
I thoroughly enjoyed it.
I don't regret it.
I might even do it again one day.
But right now, I need a nap.

Do you have a story to share about life with Lupus?  Throughout May, I want to feature stories by lupies.  Please tell me your story.  (Details are here:http://www.sometimesitislupus.com/2016/01/tell-me-your-story.html)

Tuesday, 19 April 2016

Autoimmune Research & Resource Centre World Lupus Day Events

The Autoimmune Research and Resource Centre is sponsoring these events in New South Wales for World Lupus Day 2016:

(World Lupus Day is 10 May each year.)




Autoimmune Resource & Research Centre - ARRC
Level 2 Pathology North Bldg, John Hunter Hospital, Locked Bag 1, Hunter Region MC 2310 Australia
P 04249 214095      HNELHD-ARRC@health.nsw.gov.au
W www.autoimmune.org.au  | CFN 22223  | Quality of life through education, support & research




Are you organising a World Lupus Day Event anywhere in Australia? Email me the details if you want them shared on www.sometimesitislupus.com.  (If you want to send me photos to publish after the event, just be sure that everyone in the photo is OK with it being published.)

Tuesday, 12 April 2016

Isolation

Image: cat.  Text: Chronic illness can be very isolating. Sometimes it can feel like everyone has forgotten you.Being sick can be an isolating experience.

Gathering the energy to go out at all can be hard work.

If we're not working, that's a lot of time that we're no longer spending around other people.

Friends might continue to invite us to take part in things, but if we've had to cancel at the last minute for health reasons too many times, they tend to stop asking.

I'm better off than many lupies, because I'm sharing a house with family members.  Even so, I get lonely at times, when everyone else is busy or out.

For lupies who live alone,  it's much harder.

I've handled the situation by putting a lot of energy into getting out to church, to writers group and to toastmasters.  It gives me an opportunity to meet people, and to start to make friends.

What I've found easier than actually getting out, is inviting people to come to visit me.  Putting out a nice table cloth and the good china helps me feel like it's as good as going out, even though it takes less energy. (Although not all that long ago, I ended up lying on the couch while my son talked with visitors - it doesn't always work so well.)

The internet has made it easier to keep some connection with people, but occasionally everyone would rather have an actual human being around.

What we can do about  being isolated will vary from person to person.  If at all possible, getting out and getting involved in something is great - but it takes a lot of energy and not everyone's able to do it.

Keeping in contact with friends over email or phone is better than nothing.  Inviting friends around for low-key activities like a movie and a pizza can be a great thing.

For family and friends of lupies (or other people who could become isolated because of illness):

  • Don't give up inviting them to join in things you're doing.  Even if they've cancelled on you a dozen times, it's not them it's the illness. They're as frustrated as you are.
  • Offer to drive when you go out together. (It really does make a massive difference.)
  • Offer to pick up something nice to eat and come over for a meal together.
  • If you go to visit and the housework's not done, ignore it and give your attention to your friend. (Or offer to help, but still make time to give your full attention to your friend.)

Monday, 11 April 2016

Like Squeezing a Sponge

Image two cats lying back-to-back.  Text: Painful, dry eyes, dry mouth, at the same timeas being swollen and sore from retained fluid? Lupis is like multiple diseases in one.One of the (very many) things about having lupus is that it's possible to have seemingly opposing symptoms at the same time.

Take, for example, last night when I couldn't sleep.

My eyes were so dry they were agonising. You might know what it's like - when your eyes get so dry that any moisture - drops, water, even your own tears when they finally appear - actually burn.

That's the stage my eyes were at.  I'd put in polygel eye gel, and it had hurt and then been absorbed.  (An optometrist once had fun getting my kids to watch as she put drops in my eyes that were absorbed immediately, leaving my eyes still incredibly dry.)

At the same time my mouth was dry.  I felt like my tongue was glued in place.

It wasn't my eyes and mouth that were keeping me awake, however.  My feet and legs were so swollen with retained fluid that they were turning purple and causing agony.

Eventually, I knew I just had to get up and take a fluid tablet, otherwise I'd get the horrible headache I get from fluid retention (that's next after the swelling for me.)

I got the pill and went to swallow it without water, because that's just something I normally do, except it got stuck on the back of my dry mouth.  (Which was more than mildly uncomfortable.)  The stuck pill was unstuck with a drink of water.

After a while, I felt the tingling in my legs that lets me know the fluid's going and the swelling's going down.

Another thing happened, something I've noticed before and asked my rheumatologist about, but he can't explain it.  I started to produce saliva and tears.

I don't know what is happening - perhaps when my body is retaining fluid, it's retaining it everywhere, and when I take the fluid tablet, it just gets squeezed out like squeezing a sponge.

That seems silly, but it's the only explanation I can come up with.  Bodies don't work like that, or do they?

I still didn't get much sleep, I spent most of the night running to the loo. By morning I was about 3kg lighter and felt a whole lot better.

Image: gingerbread men with different outfits.  Text: This year, Sometimes, it is Lupus is celebrating World Lupus Day throughout May. To find out how you can take part, and share your unique story of life with lupus, go to www.sometimesitislupus.com


Hey lovely lupies, while you're here, why not fill in the Lupus Survey.  Hopefully by World Lupus Day, we'll have discovered some interesting things about people with lupus.

Can You Help the ANU?

Image: an incomplete sewing project.  Text: Lupus research: the Job's not finished, but someone's putting the pieces together.Hey lovely lupies, is there anyone who lives (or happens to for some other reason be) in the
Australian Capital Territory, who might like to help out the Australian National University with a lupus awareness campaign?

Here's the details:



Overview:
My name is Jimmy and I am from the Marketing and Communications Services of the Joint Colleges of Science, Australian National University. Our team is working with ANU Lupus researchers to raise the profile of the disease and increase funding for research. 

We are currently planning a campaign to coincide with World Lupus Day. Our campaign will publish real stories from patients and researchers to inform people about the illness and encourage donations. 

An important aspect of our campaign is to inform the public and potential donors about Lupus and how it affects patients. We are interviewing researchers and people affected by Lupus and creating short videos. These videos will provide insights into the disease and the research taking place at ANU. 

What would be expected of you?
If you choose to participate, we would ask for you to speak on camera about how Lupus affects you. We would not ask you to speak about anything that would make you uncomfortable. We would consult with you beforehand to ascertain how you would like your story to be presented. 

How long will it take?
The filming would take no longer than an hour of your time. We would also ask for a brief meeting beforehand to discuss the interview.

Where would your story be published?
Your story may be published in a number of places. This could include:

The science.anu.edu.au website
The Science at ANU Facebook page. 
The ScienceANU Twitter account. 

What if you are unhappy with your interview?
If you decide you’re unhappy with the interview, we will be happy to leave your interview unpublished. 

Cheers,


James Walsh

Deputy Manager, Communication (Acting)

ANU College of Medicine, Biology & Environment
ANU College of Physical and Mathematical Sciences

Building 42, ACTON ACT, 2601, Australia
The Australian National University
T: 
+61 2 6125 4375

Saturday, 9 April 2016

Hey "Big Pharma"

Image pills.  Text: Hey "Big Pharma", thanks for keeping me alive!There's been a movement over relatively recent years, to reject mainstream medicine, and substitute with "alternative medicine."

The alternative's become so popular that much of it is covered by health insurance nowadays.  In fact, the last time the cost of my health insurance went up, I looked at what my cover included, and went in to the storefront.  I asked if there was perhaps a cheaper option that didn't cover all of the "alternative" treatments.  Their answer, such a cover doesn't exist.

I am not going to use:  naturopathy, acupuncture,  reflexology, kinesiology, Chinese & Western herbalism, shiatsu, aromatherapy, homeopathy, Bowen therapy, Alexander technique and Feldenkrais, but I'm covered for all of them. All of those are included in a basic extras cover - the one I need if I want cover for the dentist, optometrist, and physiotherapist.

As all of the "alternative" treatments have become more popular, it has also become quite fashionable to complain about and suspect the motives of "Big Pharma".  (This despite the fact that prescription medication is subject to far more stringent government controls than the "alternative medicines", which can often also be multi-million dollar businesses.)

I understand - "Big Pharma" is a set of  corporations just like "Big Electronics" or "Big Cars" or "Big Airlines" or  "Big Supermarkets" or even "Big Herbal Medicine." Big corporations exist to make money, and don't have any real feeling for ordinary people. But do you know what? All businesses, big or small, exist to make money.

So let me be the person to come out in favour of "Big Pharma" along with the rest of evidence-based medicine.  Thanks to pharmaceutical companies, my doctors, medical researchers and my local pharmacist, I am alive and my symptoms are mostly quite well controlled.

Thank you: thank you pharmaceutical companies, thank you doctors, thank you pharmacists, and thank you medical researchers. May God bless you all, and may you all continue to help keep lupus under control.

As for "Big Health Insurance"?  I'm starting to wonder if maybe I'd be better served by parting ways with them, and just trusting the government won't destroy Medicare and the Pharmaceutical Benefits Scheme.


Image: gingerbread men,all with different outfits. text: This year, Sometimes, it is Lupus is celebrating World Lupus Day throughout May.  To find out how you can take part, go to www.sometimesitislupus.com
Do you own a blog, or other resource on the web to support people with lupus?  Want your site shared on Sometimes, it is Lupus on World Lupus Day?  Add your details here: http://www.sometimesitislupus.com/2016/04/lupies-on-net-where-are-you.html



Friday, 8 April 2016

Tired

Image: dog "playing dead" Text: With lupus, exhaustion is a way of life.When a lupie complains of fatigue, I wonder if healthy people understand what that means?

Unlike most people "tired" is a baseline for us.  We're always tired. We don't complain about that usually, because that's "normal".

We wake up tired - even if we've actually slept well - even if we've taken medication to ensure we've slept really well.

There's degrees of tired, however.  Most days I can make my zombie-like way to the kitchen to fuel up on caffeine so I can actually do something with my day.  Some days, I don't make it that far, I get half-way out of bed and go back for a nap.

Why is that?  Well some days, right from the start, "tired" feels like I've been dragging a load five times my own weight across a desert for the last 48 hours.

However I start the day - tired just gets worse from there.

For anyone who doesn't know, these are the basic stages of "tired" in lupus.

  1. Simply tired.  I can function, but I could do with a cup of coffee.
  2. Moderately tired.  That coffee is getting urgent.
  3. Very tired.  I'm struggling to stay awake.  Coffee's no longer helping much.
  4. Extremely tired: I'm binge eating, drinking anything I can find with caffeine, and shaking, trying to get the energy to keep going when every cell of my body just wants to sleep. 
  5. Fatigue: I'm not making sense when I talk, I keep forgetting basic things,  my co-ordination's shot and I'm dropping things and falling over.  I'm getting frustrated that my brain and body just aren't working any more.
  6. Severe fatigue:  Not only are my brain and body malfunctioning, but my emotions are all over the place. I'm just going to sit down here and throw a toddler tantrum until I get my milk and bikkies, and my blankie and nap.
  7. Exhaustion: I'm going to sleep.  I may be standing up.  I may be in a meeting.  I may be in a movie theatre. I may be standing in a line at the bank.  I may be shopping in the supermarket.  It doesn't matter.  I am going to just stop here and sleep.
I can remember (vaguely) days when I was healthy, that I really didn't even get to a 1 until late afternoon.  Now I can hit a 7 as I'm getting out of bed. An incredibly good day is one when I don't get past a 3.  On a regular day, I'm moving back and forwards over all points from about 3 to 6. 

Well, that's just fatigue.  When you add pain into the mix, that's when it gets really interesting.

Hey lovely lupies, have you thought about writing your story for me?  All through May, I want to feature posts about lupies sharing their story of life with lupus.  I just need your photo, your name, and your story.  

Full details are here: Tell Me Your Story http://www.sometimesitislupus.com/2016/01/tell-me-your-story.html (Note: if you have a lupus-related website or social media page, feel free to include the link with your story.)

I'm looking forward to hearing from you.