My Story Mandy

My name is Mandy. I live in a small Northland community. I am 47 years old and have 4 children (aged 14 – 24 years old). I am solo mum to one child still living at home.

My autoimmune issues started at age 13 with Hypothyroidism. An autoimmune condition which causes me to have an under-active thyroid.

The family GP was convinced my short stature and excess weight was due
to genetics but my Mum was not convinced and took me to the hospital.
It was discovered my heart was beating at just 36 beats a minute.

I was immediately started on thyroid medication and did well for a long time after apart for the emergence of Vitiligo in my mid-twenties. Vitiligo is a chronic skin condition in which the skin loses pigment. It has slowly morphed into larger patches that are luckily mainly hidden under clothes.

It wasn't until I was pregnant that I had two episodes of Toxaemia resulting in emergency caesareans for two of four pregnancies. . At the time it was explained that there was no answer as to why this happened but I have since learnt there can be an autoimmune link. It makes sense in hindsight.

The symptoms are still there but this new medication makes life more enjoyable and less depressing.

It wasn't until my youngest child was at primary school that I began to really feel unwell. I had sheer exhaustion and random odd episodes of heart pain. I found myself in the Emergency Department one day where a very clued up young doctor referred me for further tests for autoimmune disease, namely Scleroderma (a chronic Systemic Autoimmune Disease characterised by hardening of the skin) and Raynauds (a rare disorder of the blood vessels, usually in the fingers and toes. It causes the blood vessels to narrow when you are cold or feeling stressed. When this happens, blood can't get to the surface of the skin and the affected areas turn white and blue.).

I tested positive with an ANA (Anti-nuclear Antibody) of 1280:1 centromere pattern. I have a label now of UMCTD (Undifferentiated Mixed Connective Tissue Disease) including Hypothyroidism, Raynaud’s, Fibromyalgia, Scleroderma, Sjogrens (an autoimmune disease characterized by dryness of the mouth and eyes) and Vitiligo, which all seem to skip along together hand in hand.

I should also mention Parietal Cell Antibodies are also positive which are to do with the absorption of Vitamin B12 and seem to cause Pernicious Anaemia (a deficiency in the production of red blood cells through a lack of vitamin B12). I finally convinced my GP to jab me with a B12 injection once every three months.

I was treated initially with Naproxen for pain and Hydroxychloroquine as a disease modifier but these medications didn’t agree too well (as you will see in the photo of me looking like a beetroot).

The other photos show swelling in my hands, stomach, ankles along with Vitiligo and Raynaud’s. There is also a photo of how I look on good days (when things are going really well!).

I am now taking LDN (Low Dose Naltrexone), which is a fairly novel alternative type of way to go but it is definitely working to buffer my symptoms with muscle swelling, weakness, breathing pain and inflammation. Most noticeable is how it has greatly diminished the awful rat gnawing at bone type pain in my shin bones. The symptoms are still there but this new medication makes life more enjoyable and less depressing.

I found I had little support or understanding and had to quit my regular jobs since I became too unwell too often to carry on. It just wasn't worth the pain and misery.
So now, like so many others in the same or similar position I am having to re-think realistic work options with working from home being the most appealing and plausible so far.

If I can offer any advice to anyone going through this autoimmune journey I would say "check out the spoon theory”, be kind to yourself and be your own best detective".