Welcome to my online diary about the struggles of dealing with rheumatoid arthritis. I write about about the highs and lows of day to day life in an honest way as possible. I hope to share my experiences with those in a similar position and help them to realise they are not alone. It is a unique postion to be in, to have a condition which most people associate with older people when you are just starting out in life. But together, as we discuss our experiences, we can feel less isolated and alone.

About Me

My Photo
Leamington Spa, Uk, United Kingdom
I am 32 years old woman with Rheumatoid Arthritis. The disease came on literally overnight five years ago when I was 27 years old. I was diagnosed with many different illnesses before it was labelled R.A. I am taking methotrexate, humira injections, steroids and painkillers. It's been the hardest 4 years of my life though things seem to have turned a corner and I have met a wonderfully supportive partner. For a long time I have tried to fight it and had many different therapies to treat it. I lost faith in the medical world after several misdiagnoses and inadequate treatment. I then chose to follow an alternative route and have tried reiki, spiritual healing, alexander technique, kinesiology and EFT as I believe there is an emotional and psychological element that plays a part in disease. All treatments have helped the RA though not cured it. I am currently on the Margaret Hills Clinic programme for treating arthritis and this has proved successful so far. I am trying to come to terms with the illness and deal with it rather than fight it. Follow my day to day trials and tribulations coping with the disease and how it affects my life.

Tuesday, 2 November 2010

Thoughts about doctors, medication and support

OOOh my joints are sore today.  It's a weird kind of pain, almost like a stinging all over.
I am so fed up with the medical profession I am in despair.  They have been so useless over this disease.  Even the new surgery I just started at messed my meds up.  I asked my pharmacy to collect and for 3 days it wasn't ready.  Then the receptionist lied to my face about the whole thing.  I wanted to scream.  I saw the driver that collects the scripts when I went to the surgery yesterday but he is such an arrogant idiot he just ignored me when I asked was it him that was collecting my scripts.  So I end up a day late taking methotrexate and no-one is responsible, they all blame each other.



For your health to be in the hand of someone who will only see you for 5 mins and just hand you a prescription is pretty scary, but sadly this is how it is.  I am finding out far more info about meds and treatment on the net.  Why are these people GP's paid £50,000 a year? In terms of my health they have misdiagnosed me several times, not had any real time for me and not monitored my health or drugs really at all.  It's a sad state of affairs.But I went to the surgery to get a blood test to check my thyroid in case there are any problems with it.  I am reading the book Eat, Pray, Love at the moment (which is an excellent read) and am at the point where the main character is working alongside a medicine man in Bali.  Part of me thinks there must be a natural cure of solution to these problems we have with our health.  Maybe some banana skins and a few prayers are all it would take (don't mean to trivialise) to cure people but we in the west are at the mercy of the drug companies and all their profits so it's no wonder we don't have access to ancient healing wisdom we so desperately need.It's a sad and lonely life having RA, well at least that has been my experience.  It's been endless days staying indoors alone, then days out hobbling to and from the doctors, the hospitals, and the pharmacy, for blood tests, prescriptions or whatever else may exist to relieve the pain for a while.

I have found a great place for people with RA called
http://www.rheumamisfits.com and am just getting to know the people there.  They seem to be so clued up on the disease.  They are telling me things I didn't even know before like that biologic meds usually stop working after 2 years, why oh why haven't my rheumatologist told me this, what are they being paid for?  You have an appointment, they squeeze your fingers and asks what hurts, check your bloods results, briefly ask how things are and that is that.  Ridiculous!!!!

Anyway thank God for finding this site.  You can ask them anything and they seem to know their stuff. 

My joints are so sore.  I think because I have tried to come off my prednisilone and gone to 3mgs in an attempt to shift some weight but it hasn't worked and my joints still hurt. I don't want to go back up but I think the humira may have stopped working.

I have asked for a second opinion and am going to have an appointment with a rheumatologist more local.  I travelled further because the hospital was newer and bigger but it means there is less time given to patients.  I may ask to try another biologic.  Seriously though whenever I go to the docs or hospital, it's me asking them for a particular treatment, it's me doing their job but I don't really trust them after so many prior errors with my care.

I have started on antidepressants as I couldn't hold out any longer.  I feel a bit of a failure for taking them and had all the feelings everyone has like, I should be able to cope etc etc but as a few people have pointed out, most people with RA have to takes meds for depression as it's such a hard life to cope with and inevitable that long term pain will takes its toll on your mental health. 

I asked the doc for Cymbalta (Duloxetine) as I have read that this can help with physical pain too.  Just one tablet helped and even though I thought they take 4 weeks to work, these seem to have taken effect immediately. 
When you go to the GP for depression they give you a questionnaire to fill in.  The score is out of 27 and most people score 12-14.  Mine was 22!!!!!!! Then I started wondering how long I have been depressed, why no-one else has mentioned it or tried to get me some help.  I then start thinking I have probably been depressed for many years without really realising.  Not the type where you can't get out of bed but the persistent inner turmoil and negative thinking about things.  Lately it has been a lot worse due to being housebound, I cry a lot at night and feel quite desperate at times and ask things like why me, why have I got this awful disease, my life is over what have I done to deserve this, maybe I was bad in a past life, how can I cope, why am I not getting enough support, how can I have a normal life and family living like this and so on and so on.

Its painful there is no doubt about it.

I have my appointment at the Margaret Hills clinic tomorrow and am starting to think I may be able to stick to this specialised diet if I take these antidepressants for a while as I will no longer be tempted to comfort eat.  So I may have a fighting chance. 

The pain is moving around today and my knees are sore and stiff.  I am trying to think why because the Humira had been working ok.  Is it the weather? Is it the recent injections I had for going abroad? Is it the lower dose of steroids? (Even though that happened months ago)  They are worse than they have been for a while now and it's soooooo frustrating not knowing the cause.

I am definitely looking forward to the second opinion and seeing another rheumy. I am feeling hopeful this time and think I will get better care.

Thanks for reading, feel free to leave a comment and remember if you are suffering from RA like me, you are not alone, reach out.

3 comments:

  1. Hi Jen,

    I would recommend NAET to see if it could help, helping loads with people with autism, dyspraxia and other ailments, including my daughter with eczema... it's a mixture of kinesiology and energy therapy/acupressure.... worth checking out if you can. x

    www.feelwelltoday.co.uk

    ReplyDelete
  2. Thanks, I will have a look x

    ReplyDelete
  3. Hi Jen,
    I was talking to my aunt last night and she's like why don't you search for blogs about people with RA? ANd I thought it was genius!! LOL! So, here I am! I found yours : )

    I can really relate to what you're saying. I'm 18 years old and a new freshman in college this fall. I was diagnosed 4 years ago, but they began the diagnosis process 7 years ago, so it took 3 years to diagnose. In these 7 years, it's been.....crazy for lack of a better term. Recently I've realized just how much I've decreased ability-wise and it's really scared me.

    THank you for mentioning the site, I think I'll check it out. It sounds really valuable!

    Hopefully over time, if you don't mind a random stranger popping in, we can share more of our stories and get to know each other : )
    Thanks so much! Talk to you soon,
    Hannah

    ReplyDelete

My Rheumatoid Arthritis Diary