Thursday, 26 February 2015

LUPUS - Onwards and Upwards

This year has had a challenging start for me health wise.  Over the last six months I've been having lots of tests, MRI scans, steroid injections into joints and various treatments in order to manage my condition and to establish exactly what is going on with my fluctuating health.

The additional diagnosis of Lupus SLE and Sjrogrens Syndrome recently provided hope in that additional medication may help with managing my symptoms.  Various things have been ongoing since September 2014 which led to this diagnosis.  It is likely that I have had these conditions for well over two years as it seems my initial diagnosis of Rheumatoid Arthritis was incorrect and in fact those symptoms were due to the former conditions.

My health had been going into flare for the past few weeks and the week after the half term holidays (during which I couldn't pace effectively) has left me largely bed bound.  I had another hospital appointment yesterday and am back on a course of steroids and also starting another medicine which hopefully will manage more of the conditions of my Lupus and my current flare.  I'm positive about the potential of this medication.  All of these conditions are thought to have been caused by the trauma of my accident and there is still so much to learn about the connections of our central nervous system / brain and physical conditions.  These are always complicated by my other orthopaedic health issues but an accurate diagnosis and medication targeted to help that should be a positive addition to my medication regime!!!  This new medication will take 12 weeks to take effect during which time the additional slow release steroid injection I was given into my muscles should help ease my symptoms until these new meds can do their work.  

I'm so fortunate to have a wonderfully understanding husband and two children to get up for each day.  It forces me to focus on pushing through many of my symptoms and I rest when they are at school/ work etc yet stops me from giving in.  Pain, mobility of my limbs and clawing of my hands and feet have been a real issue and seeming to increase in severity over recent years and it was the Hubby that pushed me for referrals to more Consultants.  I'm glad he did as it has led to these additional diagnosis which I feel positive about and the opportunity to medicate some debilitating symptoms is fantastic.

A 20 question depression test. Stay Positive #quotes:
Things can always be worse and I know many people have health issues far more challenging than mine but I felt that my health is interwoven into the make up of this blog and is a factor in my everyday and hence, a post documenting these challenges may help someone else suffering feel less isolated.  Remember to be kind to yourselves.  Take care,

J9 x


  1. Well this is not a fun situation for you, but I am glad that you have a diagnosis and are getting some treatment. It is always much easier to deal with something when you know what it is. You have such an amazing attitude and approach to all that you do in life, and I am sure that helps with your health, because as you said all of these things are interwoven aren't they. I really do wish you all the best with the treatment and all that is to come and hope that you will be feeling much better very soon and can perhaps spend more of the time doing things you like and less of the time dealing with your troubles. That is what I wish for you. Hugs and all good thoughts. xx

  2. Sorry you have been suffering hopefully having a full diagnosis and treatment will help, chronic illness is just no fun you seem to have the right attitude though, I have a chronic illness and undersatnd how hard is to pace sometime, I 'm still trying to get over my flare up from Christmas, I hope the new treatment has you feeling a lot better soon,
    Clare x

  3. I'm really hoping the new medication will help. You are such a strong positive person, always an inspiration. I'm glad your husband has pushed for referrals. Unfortunately it often seems that this is necessary for us to see the people who can treat things. I'm sending you my very best wishes Janine. CJ xxx

  4. Hi Janine, I'm sorry to hear you're having increasing complications. What a gift your husband and kids are to you for pushing you along to get the information and care that will help, and for keeping your spirits up. You sound very upbeat about your situation, which must help you cope through all these new developments. I hope the new medication will work for you, and you will soon be able to spend longer periods of time out of bed. Take care,

  5. Oh Janine. I hope after 12 weeks you find that this new med does the trick and helps with as many symptoms as possible. I couldn't imagine living with daily pain, let alone the regular stresses of day-to-day life with a hubby, children and a home. I admire you strength and positivity and I am thinking of you and wish all the energy you need to keep smiling through everyday!

  6. Dear Janine,

    I am sorry to learn that you have been diagnosed with Lupus and Sjögren's Syndrome. They can be so debilitating (I suffer from Lupus and Sjögren's too as part of Mixed Connective Tissue Disease). You are fortunate to have your family supporting you, not just at home, but with your medical treatment too.

    It is also lucky that you have had such a relatively quick diagnosis - did you know that the average time it takes for people with arthritic conditions to be diagnosed is 7 years? This is because a lot of the early symptoms are non-specific and some, in isolation, can seem to be relatively minor issues but it takes a good medical officer to put the pieces together and work out your autoimmune puzzle. Misdiagnoses (like your rheumatoid one) are common. Having that extra family to support your claims, add their observations and advocate for your needs when meeting with medical people is invaluable.

    I have been trying to collate some resource pages about Lupus and Sjögren's which you are welcome to access if you haven't already. Please let me know if there is something else that needs to be added.

    The good news is that so much more is known about these conditions now and there are a number of effective medications and treatments. I hope you will be feeling the benefits of your new treatments very soon.

    Just take it slowly and steadily with your recovery and return to activity. I know it is easier said than done (I am a single parent of 3 children) but it is inadvisable to push yourself (or push through your symptoms) too much. Often that is a sure way to set yourself back. However, sitting back with all rest and no activity can lead to further deconditioning and make it all that harder to regain mobility.

    Finding a balance that works for you is likely to take time through trial and error while fluctuating disease activity can affect your tolerances for exertion. There will be times when you can be active and time when bed rest becomes a necessity or activity is impossible. It is all part of the 'lupus lifestyle' I'm afraid and a normal experience for someone with your conditions. Take comfort in the fact that you are not alone in your struggle! Once you know the beast, you have a chance of taming it.

    Big hugs of condolence and support!
    Jodie xxxxxx