Recalling the Best of Family Days

Our family has a great tradition,  we create family history events that go into a vault to be recalled at both appropriate and inappropriate moments.

Illness has offered many family history moments. Like the time I had an undiagnosed clot on the lung, and every time I laughed I also cried. Or the weekly shopping trips when we all walked at a snail pace chatting and talking normally as I grimaced through every step;  being followed by the eyes of strangers and acquaintances alike. The kids timed me once, 8 minutes to walk 50 metres through the local shopping centre. That happened a lot when I was playing in a tennis one day and shuffling along the next.

One of worst challenges in the early stages of  my Lupus Life was organising medication - getting the scripts, remembering where the repeats were, the location of the tablets, and the emergency stash in the office and/or car. Every time I left the house someone would chirp up with ' h..a..v..e    you    ta..k..en    y..o..u..r    tab....l....e....ts? in a suitable sing-song voice. If I let them, they still do it even though I have IV infusions now.

There are other family history moments with nothing to do with me; like the "don't encourage him" call to family members when celebrating with Robert. Why, because laughing just encouraged him to keep up his comedic routines. Did he love it? Yes.  Did he take any notice? Not a bit. Recently, at our 30 something daughter's wedding, a special niece just couldn't resist taking us back to those early days with this chant.

And, there are more serious memories, from a mother's point of view. I had been suffering for several years, barely able to walk, definitely no sport or swimming for way too long; just a regular routine of pain and peace. Never knowing what the next minute would offer. It was a Friday night and my normally quiet 15 year old son was being playful and pretended to launch himself into my lap as I was resting in my reclining chair.  He mistimed the launch. We both ended up upside down on the over turned chair. The emotions that flashed across his face were priceless; from OMG what have I done, to it's OK she's alive - and laughing.

The vault is well stocked, but that's all I'm sharing at the moment. For me, it's enough to know I can rifle through the vault anytime.

Except for one of my gardening stories.  My body self awareness and co-ordination were a bit wonky at the time; and I was extraordinarily exhausted - in other words, just a normal Lupus day. I had a strong and urgent need to get rid of some ferns that were invading our home entrance pathway. They simply annoyed me when I saw them. There are quite a few stories about personality changes in the vault! This almost fits into that category. It wasn't my usual response to the garden. 

 

Grabbing a handful of stems I made one strong snip - just about snipped my index finger to the bone. Missed the stems totally, got my hand holding the stems!

It's Official! I have a Golden Aura

I always knew I was special. Now I know it's true; recorded in an official database - Jennifer Ryan has a golden aura and there is no cure.

You need to read the full record to know the whole truth, but I am reluctant to let a good headline get in the way of the truth. Could that have something to do with the recent Au federal election? Hmm!

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The long story short is .... about 5ish years ago I started noticing strange things happening; worse than spooky. Spooky I could have dealt with. Some of them I had experienced intermittently over many years - ringing sounds in my ears (not like those described by tinitis sufferers, much less severe); eyeballs felt more like fiery golfballs  than eyeballs; and my ability to think logically and ability to recall diminished markedly. Not all the time, but at least once a day, from memory! Was I worried? Did I seek medical help? Sure did. Not alzheimers was the  only conclusive diagnosis.

Last month I woke up to black and white fireworks shooting from each eyeball and lovely golden ringed surfboard shapes running around the outside of each eye. Quick trip to optometrist revealed concern about detaching retina, but all good.

Despite this decided to get second opinion. 2 hours of examinations for side effects of all drugs taken over past 10+ years concluded with diagnosis of  Silent Migraine, that includes a golden aura.

A few moments of searching and all the things I had been worried about, and a few more I was ignoring,  can be linked to my Golden Aura.   Proves once again,

the more you know

the more you know

you know nothing

!

Strangely Annoying

Frustrating, annoying, soul destroying, confusing ... just a few of the terms I have used to describe some of the most annoying consequences of Living with Lupus or RA.

Being inactive is very difficult for me. 

It's OK for a while - you can imagine you are on holiday, retreat or something. That can only work for a while. While, not being able to do the things that felt an intrinsic part of the ego lasted a lifetime.

When I got to the stage of not being able to do everything the job required I moved to retire. That was worse, not only couldn't I do those things I loved I didn't have anything specific to do every day. Being inactive was very difficult.

Gradually, I worked out how to survive. 

Lady Luck wasn't going to have that. Every time I  felt life was falling into a nice rhythm, the symptoms escalated and my life deteriorated. Once, twice, 3 times and more, until I was really imprisoned on my verandah. Only venturing down those dammed steps once or twice a week. 

If it had been a holiday, I could have stayed on the verandah, read, drawn, googled, and surfed a good part of the day away quite happily. This, not being a holiday, became something to be beaten; overcome.

So, between each downgrade, I made some plans, started some projects and built up the semblance of a new life. Adjusted it when needed, and just carried on.

Now to the crunch of the article. 

What is really annoying is that I needed to have projects, plans and ideas to stay sane. Creating timelines and lists was useless so I just flowed with the tide and enjoyed whatever I was doing. But that doesn't really suit me, or at least the old me.

One of my big plans was to create a digital history book celebrating this place I had chosen to retire in. The problem I kept running into was never finishing things in a 'reasonable time'. Could I still do the site? How long could I take? Was it worth it?

12 months later I have a website, online newspaper, Facebook page and online timeline but 'sharing' them is problematic; I wanted them finished, more professional, more, more, ... annoyance, frustration. 

AWAtt

Musing on the past

The Thoughts I Think, without notice

My thoughts have been a bit random lately, and I've found myself recalling the days/weeks either side of my confirmed diagnosis. The one constant complaint was, why won't anyone answer my most important question? What caused this? Cause and effect just weren't in any of my Drs vocab. Whereas I imagined that if I understood something about the cause or could affect the effect.

Frustrating. 

I got over that,eventually! 

Some of the many other What The moments still make me smile. Like, when I knew something was really 'wrong', and was visiting the Doc for blood results. She was very elegant, about 6' tall and was wearing a cool soft grey suit. I knew it was serious when, as she open my file and read the results her lovely soft white cheeks turned the same colour as her suit; she had literally turned grey. 

There was no way I was ready for what happened next. She: I want you to have more tests. Me: why? She: I'm not going to tell you. Just have a new set of tests done. Me: I'm not having more tests unless you tell me the results of these, or what you're worried about. She: I'm not telling you. Me: then I'll be going. 

With that I paused waiting for a response, nothing. So left her office, informed the receptionist I'd not be paying for the consult and walked out and started the search for a new Doc. 

Another time, walking across the campus with an Irish colleague who was telling me a joke that made me laugh widely. Thinking I'd just got a bit too boisterous, I tried to ignore the sudden pain in my chest area Big mistake, it was a pulmonary embolism. Just as we'll a major hospital was just over the road. Didn't get to walk across that campus again for over ten days.

There are many more, but I will save them for a later post. If you feel like it, please share any you think will bring a smile to my face.

Cheers 

One Big Sigh

Fantastic news, my eyes are A OK.

Can you see the bird in this tree? I Can :)

Had a real scare a few days back, retinal detachment was its name. After visiting a friendly Brisbane ophthalmologist, having 6 tests and 4 consultations inside 2 hours I got the all clear.

So all my plans to get some expert skills when using my iPad voice friend, learning braille and a few other brilliant ideas can go into the 'not urgent' box. 

But, I do have some plans that came to light in the time after the scare and before the all clear. 

 

Sitting, watching life on the dam

 Plan No. 1: 
make time to relax everyday, get back into the routine of yoga, breathing deeply and making time for 'zen' moments every day.

Garden colour

Plan No. 2: 

remember what I really enjoy doing - thinking right back to childhood to make sure I don't miss any. Then ... do them, as often as possible. The list so far - gardening (already pruned 2 large bushes), creative art (have created one piece of garden art and planned 2 more), repair or revive furniture, reading, photography, & painting (2 in the planning).

Breathing fresh air with calm mind

Plan No. 3: 

review the things I can control, and want to control, that are important to me. Then simply, take some action.

Plan No. 4:

not there yet, but I am sure it's working its way to the top of my mind.

Good to put the past week or so behind me. Thinking a good long walk in the bush is the go!

Platitudes, or Postertudes

Is anyone else sick of them? Those cheerful, so very very positive posters that appear on Facebook - regardless of the effort you make to ban or block them.

Not that they're all bad, offensive or inappropriate. Maybe, it's just my mindset. But let me explain.


If you scan previous posts you should, I hope, get the idea that I'm basically a positive forward looking person. So how could I possibly have a problem with Postertudes stating ...

• Be strong, you can do it
• If you don't have your health you have nothing
• Make the decision, be positive, you'll be happier!
• Happiness and health go together, choose health

Or similar such ideas?

And I should admit, I have used statements in training or development sessions in the past. I thought of them as motivators. Hopefully, I didn't send out the message that if you don't 'fit the bill' then you are a diminished person. You might even find one on my Blog page. Ouch!!

That is what I object to! I don't have health, and am really happy - at least as much as the average person. Being less than normal was not my choice, genetics had something to do with it :)

I am strong ,very strong- I just don't let he whole world know when and why. And I do make choices, good choices; often.

Rant over.
Message of the post. Think twice when you create and share these sentiments because they often hide 'put downs' couched in good sentiments and pretty pictures.

I remember when I was younger ... before life became full on.

Full on used to mean school/work, coffee/tavern, netball/parties, and a meal somewhere with the boyfriend/husband. The most important things revolved around fitting in and fitting everything in.

Eventually, though, life settles down and everything settles down into some sort of chaotic order. 

Lupus and RA mess with the settling down process, and chaotic order turns into a more panicky chaos.  That's how I am feeling now. Just got some bad news and am sorting out how to deal with it. 

There are lots of things to work out - how I feel, what I'll do, what the options are, ... I could go on.  Then there's everyone else to think of - husband, kids, grandies. All those balls in the air, juggling as fast as I can.

Whenever you take medications associated with auto-immune diseases  long-term you have to expect complications at some stage. Side-effects are standard fare; but stuff happens to everyone. Despite all the bad stuff, I've never had an expectation of happiness or fairness as a fait acompli. Right now, I'm trying to remember that and act with grace and courage - even when I'm not feeling it! Leaving each moment better than the one before by embracing all it can offer and giving what ever I can.

Easy as ... no way! But that is my philosophy; fill your life with things you enjoy, and enjoy the things your life is filled with. I 'rekon' I can be happy anywhere with anything. Now, I'm not asking to be tested on this, but I've already passed a few tests, and am pretty sure I'll cream the next one. Even if I have to start as a stoic!

My current dilemma revolves around sight; had a fright on Saturday morning. Work up with surfboard shapes flashing up my peripheral vision and fireworks flashing when I moved my head. After pausing, resting and moving slowing for about 10 minutes the symptoms disappeared, all expect a very slight shadow in the peripheral vision.

When out and about I decided to check it out with my friendly optometrist. After describing the symptoms I could tell that was a wise decision. A normally fluent gentleman, he was searching for words before finally sharing that it could be my retina detaching. Woooo. I recall nodding, yessing and breathing but not a lot of thinking happening. Of course, I knew what he meant; blindness. 

I just decided to hold my mental breath and not let it out until I had some facts. So, tests, drops, investigations and no signs of tearing or lifting. I don't remember anything else, except: "if anything like this happens again, even small, just call me straight away and I'll get you straight to an ophthalmologist". 

24 hours later, I'm still breathing deeply, have tears welling regularly and pauses with moments of sadness overtake me suddenly; thinking of things I'll miss if the worst happens.

 But mostly its been just an adjustment phase, with a series of peaks and troughs I've just kept rolling along. However, if I'm really truthful there is a very heavy ball of fear right in the pit of my stomach!

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If you're looking for a real holiday, I might be able to help. It's something I do because I enjoy helping.

Making Judgements and Judging

I've been thinking about this topic for a while, and changed my ideas and angle quite a few times. My take on life is that we all, that is everyone, judges everything they see and observe.

Judgments are thoughts, and I group them into simple groups:

• ignore, not relevant to me at this point of time; 
• wow, couldn't/shouldn't do that; 
• what, how dare they/she/he; 
• whoa, I like that, am going to borrow it somewhere sometime.

I am a simple person, and I see those criteria as simple and workable; until I delve a little deeper.

As anyone who looks or feels different will attest, when people make judgments it has nothing to do with reality. This really hit home the other day when celebrating the marriage of my daughter.

It reminded me of the time I 'got very cross' with myself. I do that often! but don't dwell on the feeling.

It was so easy to forget or ignore the fact that the 30 something colleague who was having trouble settling into the workplace was a person; rather than just someone at work. She was tall, loud and loved having fun!! In the busyness of the day it was easy to 'wish she would just grow up'.  It took a Friday afternoon session at the local to begin to understand her, and see the whole person.

Now that event comes back to haunt me when, for example, a get stopped for an alcohol breath test and can't blow for the required time, and the cop says 'just relax, you can do it!' And I think, I know I can friggin' do it, if I wasn't just recovering from pneunomia! Or, when I go to buy some tech toy (I was a nerd before the term was invented), and some young punk, apologies :) but I am old and grumpy, speaks to me as if I am deaf and blind. And is overtly surprised when I use and communicate in acronyms and share some news he (unfortunately, they are still usually  he's!) hasn't caught up with yet.

This is when my zen training is very valuable. It gives me a chance to take a breath, recall my past failures and remember there are no rules. Only the possibility of making the future better than the past.

Sometimes, the hardest part of being less than you imagined you would be is accepting that when/if people assume you can't do/know xzy you know better!! Say no more. Do no more. Just enjoy the please of knowing you are more than you may appear to an outsider.

A Little Story about living with a chronic autoimmune disease

When practical medical solutions clash with home design and aesthetics.

Lupus is a chronic autoimmune disease, that can damage any part of your body or the organs inside your body. Once diagnosed with a chronic autoimmune disease your life is ruled by the numbers - test results. Feeling like you have control over your life becomes a big part of your 'job'. Problem solving skills and stubborn determination are essential skills in your tool box. This little story is about living, not just surviving.

...............................................................................

When a family gathers for the first time in ages there are the usual range of expectations about the outcome. Here, in our part of Central Queensland, we recently celebrated with friends and family from across the country and Asia.  It was great, getting the facts and figures about nieces and nephews, careers and business'.

I have many great memories but one really short conversation with a niece, an Occupational Therapist, just replayed in my mind. When it comes to medical stuff we come from different angles.

For example, she 'loves' those very secure safety rails in bathrooms; the ones that help those unsteady on their feet. And, I can understand why, and what a useful item they are. However, I see them as very shiny, very large and very ugly additions to a home - that recast personas. I'm not ready for them, even if they might make life a bit easier at times.

She just didn't get why I didn't want "any of those things in my bathroom". I didn't give her the facts; she's probably heard them all before anyway. But, just so you know what I mean, many a time I've been at home alone, standing in the bath and really struggling to work out how I'd get out safely.

My solution, and I should explain I live on a small farm and am creating a rustic like farm house. So there is logic to my madness.

My solution was to use an old wooden ladder, from the green house, as a shelf and 'hold me up'.  It did take some negotiations, and a lot of maneuvering, but it now fits nicely into the bathroom.

One day, I may have no choice but for now I'll  keep my ladder.

Useful Links

Useful Links - to keep you going on a bad day

there are plenty of 'useful links' on the web. Here are a few I like.

• http://www.connectgroups.org.au/e-news/support-group-notices-february-2012/

• http://www.lupusnsw.org.au/lupus/tips-for-living-with-lupus

The mission of the Lupus Association 

is to work towards a world without Lupus and associated connective tissue diseases through support education and research into a cure.

• http://www.mydr.com.au/support-groups/lupus-group-of-wa-inc

Lupus Group of WA (Inc)

Mission: To provide self-help and emotional support to people affected by Lupus and for their families, friends and carers

• http://www.lupuswa.com.au/

The Lupus Group of WA

 was formed in 1979 as a voluntary non-profit organisation, and became incorporated in 1986. The Group is self-funded (receiving no state or federal funding) and thus relies heavily on memberships, donations and fundraising.

The Group was formed largely out of a desperate need for education and knowledge of lupus, as at that time very little information was readily available. Also, there was a need to develop a forum whereby problems and common issues could be readily discussed.

• Healthdirectory.com.au - Lupus 

Australia QLD Inc

• http://www.healthdirectory.com.au/Support:Information/1742,466383/Lupus%20-%20Scleroderma%20-%20Sjogren%26%23039%3Bs%20Support%20Group/

Lupus - Scleroderma - Sjogren's Support Group

Address 118 Richmond Rd, C/- Arthritis Foundation of South Australia Inc.

Marleston SA 5033  Tel 08 8379 5711

• http://www.arthritisvic.org.au/Useful-Information/About-Us/Update-Magazine/Back_Issues/Update_spring_2009.aspx

Arthritis Victoria

• http://www.wwda.org.au/portdisa.htm

Disability and Related Organisations

• http://lupus.supportgroups.com/

You need to join before you can access any information

• http://www.lupus.org/newsite/index.html 

The Lupus Foundation of America 

is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact.

• http://www.australianprescriber.com/magazine/17/3/artid/80

The lupus groups of Australia strive to assist people with lupus by providing beneficial information, support and counselling. 

These compassionate and service oriented groups seek to meet the challenge that lupus presents to the lupus patient, their family and doctor.

• http://www.buzzle.com/articles/early-lupus-symptoms-first-symptoms-of-sle.html

Early Symptoms of Lupus

Lupus can be extremely difficult to diagnose in the early stages of the disease due to its creepy onset. The early symptoms of lupus vary from person to person. This is because the first visible sign entirely depends upon the organ that's affected. Getting hold of a good rheumatologist or dermatologist is important for diagnosis and also to start off the 'right' treatment as early as possible.

Getting Your Life Back

This is the dream. Getting your life back. 

Initially, I was told "6 months and it will all be sorted". 

Over 16 years later and I never believe, totally, what  any medico says; and, I have survived very well. Well, almost very well. Actually, I have just survived, but it doesn't feel like that/

It had an impact on my life, for sure!! I made sure I knew the facts, but could never have predicted the impact.  Some were beauties.  Almost tipped me over the edge sometimes, but I was always able to manage the balance and detail of minutes/hours at a time.

I am currently on what my medico explains, in a slightly high pitched feverish voice, 'your last chance'; it a monthly intravenous injection of Actemra.  Last chance, because the last two IVs have not worked out, and tablets have turned into a joke. This one has been a bit tricky; once almost deadly, but it seems to be all good now.

A for instance, for the first time in 10 years, I have walked up some steep stairs without a walking stick and without dragging myself up. And, for the second time in three years, I have just completed a one hour walk  up small hills and down creek beds on our farm.

To celebrate the event I have created an e-book. Woohoo!! You can download Kindle and E-pub versions here. If you need a pdf version, just request one from a from on the web page.

This is a draft document. The plan is to create a revised version, so send me any thoughts or ideas. I'd really appreciate it.

Jennie

Back to the Beginning

It would have been better for me if I'd had some support over the years that Lupus invaded my life

Unfortunately, that was impossible.

First, because pre-1990s in Australia, women who reported Lupus like symptoms to their Doctor would most likely have been advised to take a 'Valium and have a nice lie down'. I know because it happened to me, more than once.

Second, it came into my life very slowly. Looking  back it is possible to identify Lupus like events from my early teens. But hey, I was young, healthy, fighting fit. It was impossible to see them as serious problems.

The birth of my second child, a daughter, was problematic for lost of external reasons. I was really worried after the birth because I couldn't move my arms to cradle her. I had no strength, my hands couldn't move into a cuddle position. Nurses assured me it was not a problem, I was just tired. I didn't believe them, this was more that tiredness, more than exhaustion; my bone marrow was tired.

I really knew I was in trouble when, after a late night parent/teacher meeting day, I filled my car with petrol and tried to clean the windscreen. I didn't have enough strength to wipe the water from the screen. After the first try, I tried again, and again, no luck. Even with two hands on the squeegee I couldn't budge the soapy water. The last 2 Kms to home were very long and dark that night. 

Worst memories of those early days

While, in the early days, I looked no different this Lupus invasion turned my life upside down. By the time the diagnosis was suggested and then confirmed I have given up so many things: tennis, swimming laps, walking, gardening, dress making and household management to name just the obvious. Less obvious to those outside my family was my need to sleep more than 10 hours every night just to keep going; the painful 90 minutes it took every morning just to shower, dress and eat.

Living with Lupus: things I really hate

• the random nature of the changes - the worst feature of the disease for me was not knowing when a symptom would appear. I could be OK one minute and unable to get out of a chair the next. It's very hard to explain how that works to family and friends, impossible to work colleagues and forget about casual acquaintances. They just don't believe you - you look OK, what can be that bad. 
• tiredness - first time I've ever admitted this; I used to sleep under my desk at work, or in my car in a park. Not often, but sometimes I just didn't have an ounce of energy left in me. And when you are that tired words just don't come our in the correct order, often the wrong words spew out and you talk jibberish! 
• taking medication every day - prior to my diagnosis I didn't even use low level pain killers, having to take up to 4 types of medication every day was difficult to deal with. I just didn't like it, and has an effect on your core self. Or, it did to me.
• dealing with medication side effects - reading the information brochures for  each script was essential. In the days before the WWW, I spend hours in my local Thornlie library decoding the terms, researching the dangers and understanding their impact. After I'd done that I could put it away and only re-check when something 'new' appeared in the way I felt/behaved ...
• change of personality - this should have been at the top of the list. The warning did come from a Doctor, in Blogs and information articles but I never, ever got used to it. It caused me more heartbreak that anything else. It is quite surreal when you have a callous, flippant or insensitive comment leave your lips that just doesn't belong to you. To make matters worse, there was no way to apologize, "sorry I have personality change issues", it just wouldn't have worked!
•  marsh mellow brain - working as a teacher (computer science)  this was a real issue; facts and figures were important and I had moments when I couldn't name a chair. The best advice I received was 'keep working as long as you can'. So I did. I spend hours every night researching the next days lessons, creating very detailed lesson notes that I could work from in class. The amazing thing was having done this my memory the next day stood up very well. Eventually, I stopped making 'perfect' notes and created things more like brain storming charts.

A quick review: 10 hours sleep needed to wake up half rested, full-time work, 2-3 hours need each day to prepare for work. It was demanding, everyone missed out. My kids, husband and me. No time for friends, or relaxation. On the positive side I felt like I was fighting back a bit. Guess who slept all weekend?

• having to walk slowly - 'bull at a gate' is a term my Mother used often when describing how I moved through life. She was a tad harsh but you get the idea. Taking stairs two at a time, striding not just walking and fitness activities all gone. Now it was stairs two feet at a time, shuffling not walking and a walk to letterbox was exercise
•  using a walking stick - I still remember the first time I used one in public; I had broken my vow weeks before but had only used it at home. It was a casual work dinner, and it was the last dinner I could get to. The consensus was 'at last, great move, well done!' but I just felt the failure of it. Something else lost. I should have taken up the offer of getting some art students to decorate it. At the time, I just wanted to pretend it would be a short term thing, and so not worth it.
• appearance - very trivial but so important. In the course of one school year I went from clothes I loved to trousers without zips or buttons. Lovely high heeled well shaped shoes to walking shoes; all day every day. How I have hated this type of shoe!
  
  
  My hands just couldn't be guaranteed to work when I needed them to as fast as I needed them to. And, my feet felt constantly bruised and broken so heels of any kind were out, out, out! What did I do? I started to visit the hairdresser often, with new cuts, colours and curls regularly appearing.

I could go on, but I won't. Short and sweet that was my plan. This is a bit long but it's been good to get it on the page.

Sorry Everyone

I have succombed, slowly and painfully!! Ouch.

I started Dusty Shelve to support dustyshelves.com.au, but alas and alack life intervened and I have been 'out of action' for quite a while. Dusty Shelves has morphed into Agnes Water Collectibles on Facebook. I am still involved but it is being managed by someone else. Please check out the page and PM me if you have any questions and queries. But, all is not lost - this blog is being re-invented, up-cycled, and starting anew as a persona record of 'how I got to here'. So, sincere  apologies to anyone looking for 'collectibles' like info or links.

Hope you can forgive me, and stay with me. 

The blog posts may seem random, but I am doing it to record the success, struggles and everything else that has allowed me to master Lupus and almost master Rheumatoid Arthritis. Now, just before any medical types interject with: you can't have both!! According to my specialist it is very rare, but possible. He classified me as a Rupus and I can live with that.

So, for those that skipped the intro, this blog is reinventing itself.

It will now be my musings about surviving life with Lupus and Rheumatoid Arthritis - and keeping your sense of humour that will feature in this blog.

Wish me well

I am being very brave. And, please hang around to share your own stories to give me a pat on the back for  surviving so well :)