BabyT247
08-14-2010, 07:47 AM
Hi all,
My name is Jill and I am 28 years old. I live in Fife, Scotland. I was diagnosed with Wegeners in April 2008.
I had my daughter Taylor in July 2007. A month later, I went out to celebrate my daughters birth with some friends. I looked lovely, still glowing and very very happy. Under the clothes I had 3 pain patched on my back because of the dull pain i felt which would not pass. My doctor first told me this was due to my epidural during labour - funny, because I didn't have an epidural. She then went onto say it is common for new mums to feel strain in their bodies at first.
By the time October came, I started to lose weight. Being overweight anyway, I welcomed this. Assuming it was due to me running around after Taylor. I was getting muscle pain in my legs and arms.
In November, I noticed a little pink spot on my eye. I went to the doctor and told her about this, as well as the back pain still being there. She diagnosed me with conjuncativitis and gave me the necessary ointment. When I woke up the next day, my eyes were covered in pus and I couldn't open them fully. They were so swollen I looked like I had been knocked around for a few hours without a break! I called my Doctor and was told this was very common during conjunctivitis.
After a few days, I was able to open my eyes only to find my whites were RED. Not a patch of white could be seen. I went straight to my GP who referred me to the eye clinic. I was then advised I had a very severe contact lens infection. Around this time, the pains in my arms and legs became worse. Visiting my doctor again I was told 'my body is adapting to motherhood'. When I look back now I wonder why I didn't kick and scream at her!
An average day in December, I sat with a pair of sunglasses on, a hat on, had to keep the lights dimmed and I couldn't be near the TV because the light of it was unbearable. By the time January came, my eyes had started to clear up, leaving just a few pink patches.
By the end of January, I was told by my doctor that me getting back to my previous routine would help the pains in my body pass. I returned from Maternity leave early.
I lasted 4 weeks before getting signed off on sick leave with exhaustion. I was having to sleep in Sick Bay during my lunch hour just to get through the day.
I was sleeping until 10am each morning, wakening only when my daughter needed changed or fed. My mum would come in and goad me for being so lazy (which she feels absolutely terrible about now) and she would have to carry Taylor down stairs because I needed to hold onto the hall rail with both hands to make it down. The pains in my body were beginning to cripple me. When I was needing the toilet through the night I was having to slide out of bed and drag myself along the floor to the toilet and back again. I Couldn't get in and out of the shower or bath without my husband (then fiance) helping me. I couldn't keep any food down and lost 65 pounds in a couple of months.
One night, my mum looking after Taylor, my husband took me out for dinner. we went to our local indian where we could easily have a starter main course and dessert each. I had 1 half of a starter and was full and feeling sick. It was 150 yards to our local pub. The walk took me 45 minutes due to the pain and it was the longest I had walked for so long. When I got to the pub, my feet had swollen to twice their size and I had a terrible rash from my toes right up to my knees. I was sick that night.
When I got home, I went straight to bed. The next morning, When I had awoken, my daughter was home. I couldn't lift her. I cried for hours because of this.
I was getting pains in my knees, one day it would be my left knee, next day my right knee. One day I couldn't stretch my fingers out properly.
My doctor decided to refer me to a specialist who deals with arthritis. Just so happens this Doctor has a keen interest in Vasculitis. I was told I would have to wait 6-8 weeks.
He called me and got me into his practice the next day.
I was admitted to hospital with suspected kidney failure and diagnosed with Wegeners after 2 days. I had a kidney biopsy which shows 2/3 of my kidneys as being affected. My ANCA was through the roof. My nose was beginning to show signs of decay.
I was treated with 60mg prednisolone and cyclophosphamide chemo for 6 months. I responded very well to treatment.
I am currently on 150mg azathiaprine and 5mg prednisolone. My ANCA level fluctuates between 2 and 4 each time I see my consultant. I experienced a fast weight gain and am currently battling to lose this, but I am pleased to be in remission.
It doesn't sound like much when I write it like this but this was the hardest experience of my life and I have read some of your 'stories' and think to myself, I thought I was bad.
My love and support goes out to you all, whether you are currently suffering or recovering.
Jill xx
My name is Jill and I am 28 years old. I live in Fife, Scotland. I was diagnosed with Wegeners in April 2008.
I had my daughter Taylor in July 2007. A month later, I went out to celebrate my daughters birth with some friends. I looked lovely, still glowing and very very happy. Under the clothes I had 3 pain patched on my back because of the dull pain i felt which would not pass. My doctor first told me this was due to my epidural during labour - funny, because I didn't have an epidural. She then went onto say it is common for new mums to feel strain in their bodies at first.
By the time October came, I started to lose weight. Being overweight anyway, I welcomed this. Assuming it was due to me running around after Taylor. I was getting muscle pain in my legs and arms.
In November, I noticed a little pink spot on my eye. I went to the doctor and told her about this, as well as the back pain still being there. She diagnosed me with conjuncativitis and gave me the necessary ointment. When I woke up the next day, my eyes were covered in pus and I couldn't open them fully. They were so swollen I looked like I had been knocked around for a few hours without a break! I called my Doctor and was told this was very common during conjunctivitis.
After a few days, I was able to open my eyes only to find my whites were RED. Not a patch of white could be seen. I went straight to my GP who referred me to the eye clinic. I was then advised I had a very severe contact lens infection. Around this time, the pains in my arms and legs became worse. Visiting my doctor again I was told 'my body is adapting to motherhood'. When I look back now I wonder why I didn't kick and scream at her!
An average day in December, I sat with a pair of sunglasses on, a hat on, had to keep the lights dimmed and I couldn't be near the TV because the light of it was unbearable. By the time January came, my eyes had started to clear up, leaving just a few pink patches.
By the end of January, I was told by my doctor that me getting back to my previous routine would help the pains in my body pass. I returned from Maternity leave early.
I lasted 4 weeks before getting signed off on sick leave with exhaustion. I was having to sleep in Sick Bay during my lunch hour just to get through the day.
I was sleeping until 10am each morning, wakening only when my daughter needed changed or fed. My mum would come in and goad me for being so lazy (which she feels absolutely terrible about now) and she would have to carry Taylor down stairs because I needed to hold onto the hall rail with both hands to make it down. The pains in my body were beginning to cripple me. When I was needing the toilet through the night I was having to slide out of bed and drag myself along the floor to the toilet and back again. I Couldn't get in and out of the shower or bath without my husband (then fiance) helping me. I couldn't keep any food down and lost 65 pounds in a couple of months.
One night, my mum looking after Taylor, my husband took me out for dinner. we went to our local indian where we could easily have a starter main course and dessert each. I had 1 half of a starter and was full and feeling sick. It was 150 yards to our local pub. The walk took me 45 minutes due to the pain and it was the longest I had walked for so long. When I got to the pub, my feet had swollen to twice their size and I had a terrible rash from my toes right up to my knees. I was sick that night.
When I got home, I went straight to bed. The next morning, When I had awoken, my daughter was home. I couldn't lift her. I cried for hours because of this.
I was getting pains in my knees, one day it would be my left knee, next day my right knee. One day I couldn't stretch my fingers out properly.
My doctor decided to refer me to a specialist who deals with arthritis. Just so happens this Doctor has a keen interest in Vasculitis. I was told I would have to wait 6-8 weeks.
He called me and got me into his practice the next day.
I was admitted to hospital with suspected kidney failure and diagnosed with Wegeners after 2 days. I had a kidney biopsy which shows 2/3 of my kidneys as being affected. My ANCA was through the roof. My nose was beginning to show signs of decay.
I was treated with 60mg prednisolone and cyclophosphamide chemo for 6 months. I responded very well to treatment.
I am currently on 150mg azathiaprine and 5mg prednisolone. My ANCA level fluctuates between 2 and 4 each time I see my consultant. I experienced a fast weight gain and am currently battling to lose this, but I am pleased to be in remission.
It doesn't sound like much when I write it like this but this was the hardest experience of my life and I have read some of your 'stories' and think to myself, I thought I was bad.
My love and support goes out to you all, whether you are currently suffering or recovering.
Jill xx