I came across Damsel in a Dress today. Its so brilliantly written and funny too.
This post on describing Lupus is a must read, yes Lupus is a car crash and a much better way of describing it than ‘have you seen House?’.
So my second hospital appointment is looming at University College London tomorrow. If you follow me on social media you may know I came out of the last one feeling a little desperate, let down and disbelieved. All of the fears of a spoonie realised in one visit. So tomorrow I receive the results of yet another blood test (I am usually seronegative) and to be patronised by a doctor.
Lists are always good so I’m going to make one here of my symptoms to take along.
- Sore throat, muscle aches, flu like symptoms
- Difficulty in controlling temperature
- Extreme fatigue
- Joint aches like acid burning inside then inflammation around them
- Acute knee pain and swelling resulting in an arthroscopy to try to control the swelling. This has been controlled with cortisone injections and prednisolone. It has meant in the past I have been unable to walk for periods of up to 2 months and find moving around my home problematic. My knee is still sore and doesn’t track properly.
- Muscle aches and spasms. Tendentious and displaced joints i.e. ribs and vertebrae
- Extreme chest, neck and shoulder pain leading to complete immobility for up to 2 months at a time. This also means I cannot drive and am isolated. I have been diagnosed with Joint Hypermobility Syndrome and see a specialist physio for this. I have also had shoe inserts made to help with the position of my feet and acupuncture and reflexology to manage the pain.
- Migraine or cluster type headaches that disturb my vision, make me unbalanced and nauseous. I cannot work or drive when they happen and I typically cannot leave the house for 3 or 4 days
- Nausea and vomiting. I go through phases of this where I will vomit uncontrollably for 12 hours or more. Often this is followed by a period of joint swelling and feeling very poorly. I feel nausea most days and take medication to counteract this.
- Eye sores and dryness. Over christmas I had an ulcer ob the inside of my eyelid.
- Ulcers in general. These are mostly in my mouth and often can reach the size of a penny. I can have up to 30 at a time and they bleed. They can also appear on the outside of my mouth, in my nose, eyes and vagina. They go away when on high dose prednisolone.
- Dry mouth and sore tongue
- Insomnia and broken sleep
- Hands and feet that go extremely numb extremely quickly in the cold and I constantly seek heat for.
- ‘Thick’, hard swollen fingers that won’t bend.
- IBS and stomach cramping. Intermittent diarrhoea and constipation. Lower back pain. Pain going to the toilet that gives me pins and needles and want to pass out.
- Extreme heartburn and tummy irritation
- Rashes on cheeks and chest and acne.
- Brain fog and memory problems
- Depression and Anxiety
So there it is, maybe I missed something so I may be back…