There is no “Miracle”

Thought I’d share Chronic Rant’s most recent post about a novel she just read.

In books and movies, tv shows and plays, it so often happens that a miracle cure comes along just in time. Some researcher has a great idea, loved ones waive all liability, the cure is administered, and everyone lives happily ever after…..If only right?

Thanks Chronic Rants for saying out loud what all of us wish we could say to anyone who asks “aren’t you better yet?” Head on over and read the full post. It’s great.


Ways to be happier at work



Inc. had a wonderful post, entitled 17 Ways to Be Happier at Work. While this list was written for the normal workers, I think many can be applied and more deeply discussed by those of us working with chronic illnesses. Here are just a few of Inc’s tips that spoke to me:

1. Don’t compare yourself to others. Everybody, and I mean everybody, starts out in a different place and is headed on their own journey. You have NO idea where someone else’s journey might lead them, so drawing comparisons is a complete waste of time.

Those of us with a chronic illness are different from the normal worker. We take more sick days, we may move slower, forget more, etc. Do not compare yourself to your colleague who works 12 hour days, or the colleague who travels 3 days a week. As long as you are getting your work done on time and/or on budget you don’t need to compare yourself. I can’t travel like the rest of my colleagues who can jet off to Detroit or Austin on an hour’s notice. But, I can make sure all the back end work at the office is complete and organized. As long as you are doing your job to the best of your abilities do not compare your work style to others.

2. Never obsess over things you cannot control. While it’s often important to know about other things–like the economy, the markets that you sell to, the actions that others might take, your focus should remain on what you actually control, which is 1) your own thoughts and 2) your own actions.

This one is huge for me. I can’t control what a client throws my way, or if an event I’ve planned goes awry in the field. But, I can control how I react when things go wrong. Lupus is aggravated by stress, so it is important not to stress about things I can’t control.

3. Know and keep your personal limits and boundaries. While your job might sometimes seem like the most important thing in your world, you’re killing a part of yourself if you let work situations push you into places that violate your privacy and your integrity.

While Inc. describes this tip in regards to workplace ethics, I think about it in regards to time. I’ve made a New Year’s resolution to keep work at work. If a situation is immediate, most colleagues will call; which means not checking my work email while away from work. I know this is hard in the world of Blackberries/ iPhones, where the lines between work and personal life have become blurred. But, in order to control my stress levels as discussed above, I must keep work and personal separate. Bonus: this means I can give my full attention to my loved ones or my health when I’m not at work.

4. Don’t over commit yourself or your team. It’s great to be enthusiastic and willing to go the “extra mile,” but making promises that you (or your team) can’t reasonably keep is simply a way to create failure and disappointment.

Again, back to managing the stress levels. You want to seem like to go-getter, the over-achiever. I know because I am that person, despite my limitations. But, when you only have so many spoons in a day it is best to avoid over-committing.

9. Make peace with your past lest it create your future. Focusing on past mistakes or wrongs inflicted on you is exactly like driving a car while looking in the rear view mirror. You’ll keep heading in the same direction until you collide with something solid.

I think of this tip in big picture terms. For years I had a dream of becoming a sideline reporter for ESPN. I worked toward that dream covering two BCS National Championships, MLB playoffs, the Little League World Series. But I couldn’t keep up. Lupus wouldn’t let me continue to run ragged, work a month without a day off, or carry a 40 lb. camera while running up and down a football field. Yes, I never made it to ESPN, but I lived my dream. I did the same job, if not more, than the other sideline reporters, and I got to cover some really cool sporting events. I can’t look back on my career change and be bitter that I didn’t make it to the top. I have to make peace with the fact that my new career allows for a lunch break, a chance to sit down, and the ability to turn work off. In the end that’s better for my health and psyche than completely fulfilling my dream.

Chronic Conditions in the UK

Today is a guest post from the lovely Anya of The Patient Patient. Anya and I connected on Twitter and have been sharing our experiences living with chronic illness ever since. On Monday I posted my review of Escape Fire, the documentary about our broken healthcare system in America. I thought it would be great to take a look at living with a chronic illness in the UK where they have, as we American’s call it, “socialized medicine.” What shocked me is that Anya only gets to see her specialists once per year! When you read the below post and anatomy of a doctor’s visit post, you may ask yourself “is the grass greener on the other side?”



Hello from across the pond! It is a privilege to have been invited by Kristin to do a guest post for Working Lupie. We connected about a post I had written on my blog, The Patient Patient about the emotional roller coaster of medical appointments. A few tweets later and we realized there were many similarities and some pretty big differences between healthcare systems in the UK and America!

Being chronically ill is a stressful experience wherever you live, but some of theses stresses differ with different countries and how healthcare is or isn’t provided. This is what it’s like in the UK, with the NHS. Ignoring all of the complex legal and organisational structures, I want to focus on what the NHS means for patients like me using it!

I live on the south coast, and have a local General Practitioner (family doctor in primary care) who I can see as often as I like. He is lovely, but because my conditions are rare, he can not offer much help with managing them. I tend to see him once a month or once every two months. I can get repeat prescriptions and some referrals with him.

My secondary care is provided by a consultant at a hospital in London,  because my conditions are rare and that is the place where the specialists are. I see him once a year (although don’t always see him, often another doctor in his team!) for around 40mins. That is because he is so busy and there are so many patients wanting to see him. I also personally feel that there is not that much they can do my way of treatment etc. so perhaps that has something to do with it too. Although I am on some medication, it doesn’t (apparently!) need that close monitoring!

Thorough this hospital I was supposed to get access to a specialist nurse, someone who I could call during a relapse, but I have had a lot of difficulties in getting this. The hospital is very busy, short of admin staff and she is one of only a handful of specialist nurses in the country for POTS (postural Orthostatic tachycardia syndrome). I have a wonderful physio who I see every two months or so and a Counsellor who I used to see weekly, and now have ‘top-ups’ when needed. This is all through the NHS.

Please note – this is just my experience! I also have 3 rare and complex conditions (EDS, POTS and a Chiari malformation), which does make things harder. I can’t put into words how grateful I feel to have the NHS, and despite the challenges I have described above, have been, on occasions, moved by the excellent of the NHS. I pay taxes, and apart from one private appointment, I have not had to pay directly for any of the care I have received.

So what do I do in the intervening days, all 360 of them?! Self-manage! I have completed the Expert Patient Programme, a course on self-management (I think it originally came from Stanford!) which helps me pace my self and importantly manage the emotional and psychological side effects of my physical health conditions. That has given me the confidence I need to be independent day in day out. It has also given me the opportunity to manage the frustration of delayed referrals, not getting hospital letters delivered and the full-time job it seems to be just managing the admin of being a patient!

There are charities that help too – particularly the Brain and Spine Foundation which has a great helpline manned by nurses. If I have a particularly bad relapse, there is always A&E (emergency room), where I can go for scans and treatment if needed. Although that said, my conditions are stable at the moment, and I am able to sit relapses out in the comfort of my own home. I haven’t had to be an inpatient in hospital since December 2011.

There are clearly some differences, but I bet my bottom dollar or pound(!) we all find it a full time job managing the admin, before we even start to thing about coping with the symptoms. We have all been frustrated with delays, over-defensive secretaries and unsatisfactory appointments. While the differences in our healthcare systems are significant, I don’t think they are insurmountable or mean that as patients we can’t join forces across the Atlantic to learn and support each other. The workings (or not workings, as the case may be!) of our nervous systems and immune systems are the same and we are all crippled by such similar symptoms: pain and fatigue. Let us not forgot that powerful overlap when discussing the systems!

Thanks for the opportunity to blog here, and do keep in touch!

Anya – @anyadei