Since about nine weeks ago I have had a very difficult time with Shingles. When the symptoms started it felt exactly like Coctchondritis which I have had many times before. On a Wednesday I reported to my Doctor pain on the bottom rib on the left hand side.
Costochondritis is inflammation of the cartilage around a rib and it can be extremely painful. Treatment is topical Anti Inflammatory cream and an increase in Prednisone up to 50 mg.
Over the following weekend a rash broke out from the middle of my back, around my left side to the middle of my stomach. I had never experienced pain like it and I have had serious pain. I passed out from the pain while trying to find a cool spot on my veranda because we are in Summer here.
Can you believe that? I have no idea how I came to get another disease let alone a rare one. Lol. And there's more!!! Since New Year Day I have been trying to fight off a Urinary Tract Infection which many know is very uncomfortable.
For the past four years I have had little or no support from my family. My father and two brothers live in another State and my mother and sister live within half an hour of me. My mother would call me occasionally but my sister made it clear a long time ago she didn't want to hear about my illness. My eldest daughter believes I created the illness by negative thoughts and does not speak to me.
Now this is my main question - Does anyone know someone who has been affected by their mother taking the Anti Nausea drug Thalidomide? On October the 23 rd last year my mother told me that when she was pregnant with me she was very sick with morning sickness. Her Doctor gave her an Anti Nausea drug, Distaval.
At the time (1960) my parents and older brother lived in a rural town in New South Wales, Australia. Thalidomide came under the Brand name Distaval. The FDA had approved Distaval and promoted it as a safe anti-nausea medication for morning sickness. The drug was extensively advertised with posters and printed flyers calling it a ‘Wonder Drug”. Doctors were given sample boxes to give their patients before it became available by prescription at the Pharmacy.
My mother told me she didn’t want to take any pills but she was dangerously dehydrated and she had been fainting. Mum’s Doctor gave her the Distaval and my father would give mum "a little white pill" and a glass of water every morning, before she got out of bed, from her 7/8 th week of pregnancy, for weeks.
The USA was very lucky because Thalidomide was not approved for use thanks to a savvy female Pharmacist Doctor Kelsey on the FDA advisory council. However there were still some sample boxes given out.
In Australia in 1962 it became Public that Thalidomide was causing serious birth defects across the world. There were no computers back then and communication was much slower than now. History tells us that over ten thousand babies were seriously traumatised and were born without arms or legs or both. Many thousands of babies miscarried or died soon after birth.
Over the past few weeks I have done as much research as energy would allow me. I have learnt that it depended what day the mother took the Thalidomide as to how much damage was done to the unborn baby. Some mothers only took one pill but because it was early in the pregnancy their baby was born without an arm or a leg.
I was very lucky because my mother did not take the pill until a little later and my arms and legs were not affected. The problem was because I looked normal when I was born it was assumed there was nothing wrong with me. At 8 weeks an unborn baby is developing the Thymus whic regulates the Immune System.
Ever since I was very young I have had health issues of some kind. Debilitating earaches, muscle pain, headaches, Depression. Then in 1990 I was diagnosed with Graves’ disease and from there my symptoms became more painful and frequent. Four years ago I could no longer work and was diagnosed with Fibromyalgia and Hashimoto’s.
I had medication resistant Depressive Illness for sixteen years until my Psychiatrist prescribed me a stimulant to increase my Dopamine level. That was on May 7th last year and the Depression lifted immediately with no side effects at all.
My issue now is last week I reached out to my family for some support because this has all been a bit overwhelming. Well that was the worst thing I could have done. My mother has basically turned against me. She has rang and told my father, two brothers and eldest daughter that I am not getting better because I want to be sick. Also she has told them I am taking dangerous drugs, I’m addicted and need to go to rehab.
This is really serious because my brother is a Psychologist in Melbourne and he works with street kids. He sees the drug addicts and what the drugs do to a person who abuses them. I am on opiate pain relief because I cannot take anti-inflammatory meds or anti-seizure meds. I have never injected my pain relief and take it orally for severe pain. It does not make me high at all. Last year someone stole some from my car.
They could cause a lot of trouble for me if they get it in their head that I need to be saved. My father yelled down the phone at me that I want to be sick. They haven’t supported me in the past because they didn’t even believe I was sick in the first place. They asked to see it in writing from a Doctor. Mum has been to the Doctor with me and he told her I have a dangerous illness. Until Saturday just gone I didn't realise they didn't believe me. My father said why haven't you gotten better from this apparent illness by now? Ha! They've had 24 yrs to find out about my A-Immune Disease & Fibro.
I am pretty devastated but also angry with myself for even thinking they would help me. How stupid am I? They weren’t before so why would they suddenly start doing the right thing now. It's not about compensation, I want to get help to get better.
My mother is refusing to put it in writing because she said she doesn’t want anyone to blame her for me being sick. My father claims he has no memory of giving mum the drug. The suspicious thing is that after it became known the drug was dangerous to unborn babies we moved in with my mother’s Doctor for nearly a year. My mother said my father arranged it, yet now he has memory loss apparently. My father is an intelligent active 75 year old who was known to have a photograph memory.
I didn’t blame mum because the Doctor and mum were told the drug was safe. However they could have told me a long time ago. Because I had arms and legs it was assumed the drug caused me no damage. It was noted when I was born I had bright red feet and all my life I have had Psoriasis on my feet. Mum told me it was Dermatitis but it’s actually an Auto Immune disease.
I’ve been accused of just wanting pity, playing the victim, being too self-focused and pathetic. Wow! Where did all that come from? I would like to meet someone whose mother took Thalidomide when she was pregnant with them. I would like to be checked out by a Neurologist because other Thalidomide babies report narrow ear canals, Thyroid Disease, nerve damage causing pain and now they are getting Cancer.(apparently)
I would be very grateful if anyone has any advice on what I should do or whether I should do nothing. This illness is hard enough to cope with without everyone in my family thinking I'm making the whole thing up. Has anyone else experienced that?
Thanks for reading this
Kittyhorse