Lupus United

This weekend I had to rush to hospital with a suspected blood clot which turned out to be something else for which I now take antibiotics.

At the triage stage I mentioned my lupus, which was duly noted. After a short wait I was taken in, a nurse had a quick look, discussed with the doctor as to next steps and then came to take some blood.

While getting ready to take my blood the nurse asked me how I got to be diagnosed with lupus. I thought she was only being polite so I described briefly the main points. But actually she was asking because she had an unexplained rash on her arm, repeated pulmonary infections throughout 2012, her hand joints were so painful sometimes it was difficult to do her job, she was so exhausted that many times she felt she couldn't come to work, she had rheumatoid arthritis in the family and her two children (v young) were having unexplained skin rashes every so often. And she had photosensitivity too. Many of her blood results were out of whack but her GP insisted to treat her for each symptom separately and told her to wait another 3 months and redo the blood tests.

She didn't want to be seen as a hypochondriac ( sounds familiar?) so she was reluctant to request a referral at this point, despite being so concerned. Needless to say that by the time I was discharged she changed her mind and had the name of my rheumatologist, determined to ask her GP today for a referral.

Two points I wanted to make with this story:

1. The path to diagnosis is as long and arduous for other people as for each of us, despite overwhelming evidence that should trigger more interest from GPs (but then we knew that, it is just that it was confirmed to me in such a random way)

2. I can't tell you how close I felt to that lady during that hour while I was in their care and by the time I left it was like we have known each other for ages. I felt for her struggle and i liked her for her decency and strength to carry on and care for others, strangers, on a daily basis, while battling this. When I left the hospital it was like I left a sister behind and I really hope she carries out her plan to push for a referral etc soon.

Lupus unites us in an unbelievable way and gives each of us strength and support when no one else can or wants to.

Here's to "Lupus United" everyone!

18 Replies

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  • Never a truer word said! And well done u :)

  • It left me buoyant for some reason, today I feel on top of the world, despite having a rash from the antibiotics I now have to take for a week, but that's a minor thing. Thank you x

  • xxx

  • So beautifully said it made my eyes fill. How lucky was that nurse that you were being treated. They say that people come into your life for a reason, season or a lifetime. You were her reason. xx

  • I know, I felt a bit in awe of how the right time and right place could happen! Thank you for your kind words x

  • it is things like this that makes me such a spiritual person. And the older i get and the more life experiences I have, the more spiritual I become.

    I was sorry to hear of the reason that you had to go to hospital, but it just shows you that it was YOU that was needed that day, for that woman and for that reason.

    And equally you needed HER to impart your knowloedge, point her in the right direction and to lift your spirit.

    Even though this life and this world can push us to the very limits of our capabilities, it is magical moments like these that prove to us that there is always something bigger than us.

    I had a very similar thing happen about 6 weeks ago. I booked myself in to have a hair cut at the local headmasters academy, as a model as i cant afford it otherwise.

    the morning of the appointment came and I felt unwell, too tired and undeserving of anything nice (as usual) and so I rang them to cancel. I spoke quite briefly to a young assistant who told me to come along anyway and that maybe it would make me feel a little better.

    I took her advise and went.

    I had to walk there which felt like it was going to kill me, only 10 minutes up the raod, and by the time i got there i was wet with sweat, my face was burning and it took a lot to stop me turning around and going back home.

    I opened the door of the salon and a young, attractive woamn came to greet me. Her name was Amanda and she was the lady actually booked to do my hair.

    We had a little chat and she let me into the fact, that had it not been for my appointment she would actually have gone home as she was feeling very low that day, very emotional and teary and there was so many bad things going on in her life that she felt unable to cope.

    My reaction to her openness was to open up myself and during the course of my two hour appointment I beleived that we had made a connection, shared many feelings, that up until then we had both managed to hide from others.

    And between you and me, when it came to leave I battled with myself as to leaving her my address and phone number. I did write it down for her but after questioning myself as to why she would even want that information I folded the piece of paper away and dropped it into my bag.

    As I went to leave she thanked me for being her model and handed me a piece of paper with all her contact details on.

    we hugged goodbye and I left there feeling that I do still have something to offer, and also feeling that I had made a new friend.

    I almost skipped home, and even though still in lots of pain from walking, I didnt feel it !!!!!!!

  • I'm kicking myself for not leaving her my details, you're spot on with that, I didn't want to impose and she was probably not sure either. But that is not the important thing in the end, the coming together in such a random way for the benefit of both of us is. I haven't experienced that before, but I knew many of you did, hence the blog.

  • Again a lovely moment between two people in need and able to offer empathy to each other. Although I have always been empathic and caring I have found that since having this condition I am even more mindful of people who have some level of disability. I think it is also about when we let our guard down a little it's surprising that other people will do so too. I have been guilty in the past (and now at times) of always coping, always being busy and seemingly managing with everything. Once you actually admit that you have a condition/struggle sometimes a connection will always be made for those people who don't turn away from you. I have learnt more in the past year about other people and myself and like you said Mandie we do still have a lot to offer. Mandie I'm so happy that you went that day:) xx

  • Thankyou huni. I am very glad too x

  • Hi MandieR,

    I have heard it said that coincidence is God's (whatever/whoever your God), is God's way of remaining annonymous

  • What a lovely well written experience! I wish I had the skills to write as coherently as you do!

    It's good to see that lupus can still bring people together, especially when most of the time all you hear is that you've lost friends because they do not understand you anymore or do not want to understand.

  • Thank you, I'm glad I've conveyed the sentiment with sufficient clarity, you will do too after all those essays you'll have to write at uni, you watch. X

  • Dear purple top I was very moved by your experience ( even though I'm sorry to hear you wasn't feeling well) they do say that it takes a special person to be a nurse but I think you were lucky , she seems more like a guardian angel. I am not a very spiritual person , but it's good to know that these very caring people are out there . Do hope. You feel better soon and also let's hope your nurse gets the right treatment she needs.take care .

    Suzanne x

  • Thank you for your good wishes, Suzanne and you are right, in today's day when everyone is encouraged to look only after number one, it is wonderful to find that some don't follow that line. X

  • That is a lovely story, and I agree that you write so beautifully. Hope that you are feeling better xx

  • I don't know what to say, thank you for your lovely compliment! As for how I'm feeling, these antibiotics are finally starting to work, which is good, though side effects include nausea and tiredness, I hope they won't trigger a flare. Thank you again. X

  • It was fate purple top and mandie both stories brought tears to my eyes on a lovely happy way.it was four people brought together who all did something for each other wonderful.purple top I agree you have a gift for writing x

  • Many thanks, LL, I'm humbled that this little story managed to touch so many of you. Thank you. X

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