5 Responses

  1. Maree
    | Reply

    Hello Jane. I’ve been working out which of my big bag of symptoms beginning in early childhood are due to Sjogren’s and which are unrelated. The more research I do the more obscure details I discover. I have been waking with my hands in claws and wondered about it. I didn’t mention it to the doctor. Sometimes several of the fingers hurt when I unfold them. They’re all quite weak these days. I’m grateful that you included the claws in your blog because now I don’t feel as paranoid.

    On the up side I find that losing taste offers a little bit of freedom from the drudgery of food provision and preparation. It is so uninteresting a carrot and an apple often suffice these days. I have found another silver lining – damaged mucous producing glands have resulted fewer sinus infections. I hope this situation doesn’t reverse and I hope you find the same (dried out but) silver lining.

    I am not sure what breed of dog to get after my border collie. Luckily he is getting old so skipped walks are acceptable. A dog is essential but I might need a lazy one next time.

    Doctors generally measure patients by an imaginary lowest common denominator. They are often applying this fabricated norm and it makes them spout ignorant advice. I tend to rely on my own resources as much as possible. It’s the safest option.

    Good luck. Use your eyedrops. They’ll preserve your cornea so you can keep blogging.

    Maree

    I have a border collie

    • Jane Waterman
      | Reply

      Dear Maree,

      Thank you so much for writing. I apologize in being slow to reply. It’s been a bit of a struggly week.

      I agree with you that when you look back you can see so many potential connections between past symptoms and current health issues. When it’s been going on a long time, it’s hard for the foggy brain to remember what was what, but I don’t think it a coincidence that many of the symptoms I had at 13 with glandular fever aka mono are so many of the symptoms that have plagued me as an adult.

      The “claws” I think are associated with the general muscle tension with fibromyalgia. It’s complicated because the joint pain in my last finger joints has always been one of the more painful areas, but I can sometimes wake up in the middle of the night with my body literally arched off the bed, the hands like claws. I know that stress is a bad thing for fibro and autoimmune disease and I’ve been under it so long. I’m working at developing a compassion practice and doing what I can with gentle yoga, but it’s hard when movement can exacerbate the symptoms. We do what we can!

      I think what you say about the sinus infections is true – I have had far fewer of them as I age, because the area is so damaged in many ways. I could do without the sore throat 24/7, but it’s amazing how much you tune it out. I love good food, even if the smells and flavours are subdued. My biggest issue lately is the energy to prepare a good meal. I’ve discovered a really lovely premade kale salad that helps with meal preparation a lot.

      I love going for walks, but some days it has to be a compromise. I know my dogs miss it when we don’t go everyday, and goodness knows we have so many well-meaning people mention how “chubby” they are, but what can you do? On rare times I feel very angry about it, but most of the time I just realize that people just make conversation, and don’t always think about it. I don’t want to ever think about losing our two beagles. They are like my babies now… on days when I can’t go out, just to lie on the bed with them feels comforting. Many people aren’t aware how much they are “therapy” animals as well as families.

      Ah yes, and definitely, I’m a strong advocate of eyedrops. I have gel drops that are thicker than the usual and work well for me. It seems a really personal choice to find what works well.

      Thanks again for writing. Please take care!

      Blessings,
      Jane

  2. Annette
    | Reply

    Sorry there is just no relief for you. I read today about virgin coconut oil being good for the mouth. No, not through Gwyneth Paltrow though she was in the article. It was Leslie Laing Who has been to the Sjogren’s conferences regularly who was quoted with an opinion.

    https://www.thestar.com/life/health_wellness/2014/03/28/is_coconut_oil_the_new_listerine_oil_pulling_has_antibacterial_benefits_u_of_t_prof_says.html

    She plans to try to replicate the study and she has some grants to do Sjogren’s Research so that’s a plus.
    I am heading for a talk tonight on the future of healthcare. That should be fun

    Annette

    • Jane Waterman
      | Reply

      Dear Annette,

      Thank you for writing and bringing the “oil pulling” to my attention. I hadn’t really heard of it! I’m not a huge fan of coconut, but I would certainly be interested in the results of any studies, and I’m ever leaning forward to more natural remedies.

      As for “relief” – like anyone with chronic illness there’s good days and bad days. It’s been tough lately, but I hope this is just a flare after a prolonged period of stress and things will look up. There’s a lot I want to do, but at the moment I am just learning to be patient and doing what I can. :)

      I will be doing my next post for the WAAD Blog Carnival soon, so I’ll need to put my thinking cap on. It’s about issues in life as an Autoimmune Arthritis patient. I am studiously avoiding doctors at the moment, so I feel more like an experiment than a patient. I know I have a lot more advocacy work I want to do, but I’m being easy on myself while there’s so much going on. As always, I’m glad there’s folk like you who are keeping patients front and centre in the discussion.

      Thanks as always for writing. I hope you are taking care!

      Hugs,
      Jane

  3. ChronicCrone
    | Reply

    Hello My Friend
    What an incredibly powerful snapshot into your daily life. I can relate to much of it. It’s such a shame you can’t tolerate some of the meds. Have you tried the prescription strength Voltarin this one you have to get from your Doc. I can’t take any anti inflammatory meds as it does a number on my stomach but the rub in cream is ok.

    Joan

Leave a Reply