Hi everyone. This month's blog has been written by Lisa about her experiences in getting diagnosed with lupus. We'd like to say a big thank you to Lisa for taking the time to share her story.
My name is Lisa and I am 52yrs old. I am married with two children and one grandchild. I was predominately a healthy child in a family of four siblings, two of which were poorly. I was an athlete until 18 years old and the only hospital contact I had was visiting my siblings. I did however suffer with anaemia. I had a very complicated first pregnancy, with serious anaemia and unexplained rashes. My baby was healthy, but I was unwell. I had similar problems with my second pregnancy.
When my daughter was 18, I returned from a cockroach riddled hotel abroad, to the start of my medical journey! I had such severe pain in my ear and jaw; I honestly thought a cockroach had crawled in there. My GP gave antibiotics but said that he felt there was more to it, as by now the pain was in my temple too. I returned two weeks later in tears and desperate for some pain relief. He gave me three diazepam to take at the surgery and called for an ambulance. The paramedics noted a swelling in my neck and said to mention it. I was admitted for a week of pain relief. My week in hospital then turned into three weeks and my symptoms were multiplying. I was admitted to the neurological ward. I was by now wearing a baseball cap and sunglasses in the ward, as I couldn't tolerate the light. I was tested for MS and had a lumbar puncture along with many x-rays and scans. My family were scared as I was losing weight rapidly, and I was obviously very unwell. It seemed that every day they were waiting, hopefully, for another horrible, possible diagnosis to be dismissed. It didn't help when now and again a doctor would pop up on the ward to discuss the possibility of stress being the cause!
I had injections into the back of my head, pills and potions of all colours, but when someone suggested steroids, the pain and symptoms began to abate. They were about to discharge me with, 'cervicogenic headache and pernicious anaemia', when my husband stepped in. He refused to take me home until they scanned the now enormous bulge in my neck. I had an MRI and radioisotope scan which revealed a multinodular growth on my thyroid gland. I was visited by an endocrinologist who said it had to be removed, and soon.
I had an appointment to meet with the surgeon to discuss its removal. The surgeon seemed to be very put out that surgery had been proposed without his say so. He also told me I would have to see a psychiatrist as he thought I had Munchausen’s.
My GP suggested I would have to have this assessment, or no one would take me seriously. I paid £185 to talk to a stranger for half an hour, who decided I was of sound mind and my suffering was real. I still have his report and joke with my family that, I have it in black and white, I am not mad. I decided not to return to the surgeon, as I was actually scared of him. We pooled our money and went privately to seek help. My doctor was wonderful and he could tell that I needed urgent intervention. I of course, had to undergo more scans and tests as he wasn't privy to my NHS records, despite asking for them. I was booked in for the surgery, privately, two days later.
After the operation I was told that all was benign, but there were two huge, blood-filled sacs that could have burst at any time. This would have been fatal! My doctor also said that he wondered how I had managed to breathe and eat as these tubes were also crushed (not anxiety as I'd been told). He did say that he did not think this had anything to do with my facial pain. After a long recovery I returned to normal life, albeit briefly, as a year later my partial thyroid removal had grown back. I had to have a second operation to totally remove it.
The matter of my anaemia had still not been addressed, so my new GP sent me to haematology. I had to have an iron transfusion every other week day, for six weeks. The doctor ran his own tests and finally referred me to a rheumatologist as something was attacking my blood. He spoke of positive ANAs, but it was all mumbo jumbo to me.
My GP was not interested in referring me, so again I went private. The bloods suggested thalassemia, and at one point they said leukaemia. I was now getting joint pains. On top of all this the NHS had asked me to see a gynaecologist regarding my monthly cycle. The private rheumy had not reached his conclusion and gynaecologist was pushing me to have a hysterectomy! I told the gynaey that I was under investigation for other causes but she would not listen. I was told that I must not refuse this op as I would not be taken seriously again. The op was booked and I went to the pre check-up with a letter from my private rheumatologist stating that I may have an autoimmune condition called lupus. I had a total hysterectomy in May 2005 (needlessly in my opinion). When I returned for my six week check-up I saw the gynaecologist. She was almost screaming at me that she would never have done the op if she knew about the lupus. She said I could forget about recovering in six months. It would probably take two years because of my meds. I have to say she was right about that.
When my much wanted appointment came through for St Thomas', I was diagnosed in a flash. I was told I had many other secondary conditions including vasculitis. This was the cause of my facial pain and rashes. I was also told that the lupus had probably attacked my thyroid, and was definitely the cause of my anaemia. The relief that overcame me was indescribable. I can't say my family were put at ease though, as obviously they wanted me well.
To reflect on it all, I have to say my attitude towards doctors has changed now. I always go away and assess their opinions before accepting them. If I feel disbelieved in a consultation, I will speak out there and then. I push if I feel I need urgent medical attention (I’m perhaps too pushy). The whole experience has left me bitter with the doctors on my case. I do see lovely NHS staff now, but I feel I am patronised sometimes. I'm not angry with my diagnosis. It's the hand I have been dealt. I am bitter at the length of time it took for me to be taken seriously. My kids were entering their teens and so much time was spent worrying over me. I had to sell my business which I loved. I had to spend a whole year in a wheelchair, and most of all I had to battle the doubting Thomas’s.
‘So called friends’ would imply that maybe I was stressed because of having teenagers and a business to run. This put enormous strain on my husband as he felt at blame. Now these ‘so called’ friends want to be in my life, but I can't forget that they doubted me.
Thanks for taking time out to read the (believe it or not) short version of my journey.
We're still looking for somebody to share their experiences of getting diagnosed with lupus for next month's blog. If you'd like your story to be featured, please email me at paul@lupusuk.org.uk
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