Vicki's Story

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Vicki's Story

My name is Vicki, I'm 23 and I was diagnosed with Lupus at the age of 19, when my life was getting good, typical eh?

I live in England and have looked at various sites on Lupus and have to say this is the best one, the uk version is like a hospital leaflet, you know those useful wastes of paper that are no use nor ornament to anyone and i bet the only people who read them are the ones dying from bordom in the waiting room during yet another doctor's visit.

Anyway, my story....... When I was 2, I contracted Meningitus C, nearly died but I was just testing. I suffered from miagranes all my life, which we thought was from the brain involement of the meningitus, although I have recently learnt childhood Lupus can cause Miagranes, whether that is true or not is a different matter, funny how I hardly get them since being diagnosed with lupus though?? In my teens (a very stressful time,for reasons I won't go in to, if its all the same with you) I would get excruciating stomach pains and was taken to hospital, where they couldn't find anything wrong, the pain would subside and i would go home and be told to rest.

From leaving school and going to college, I met and fell in love with my first proper boyfriend, who, unfortunatly turned out to be an abusive alcholic, drug addict andmade my life hell. I dropped out of collegewhere i was studying Beauty Therapy to fulfill m dream of becoming a make-up artist in Hollywood, I had my life planned out, cruise ships, New York, L.A but it wasn't to be,suffering from depression i gave up all my dreams. Finally he got rid of me and I started again, but something wasn't right but i could never put my finger on it.

I started workingin a pub, age 18, and loved every minute of it, the place was like my second home and after losing all my friends to him, it was great to talk to people again, go out, have a laugh. The landladytook me under her wing, her daughter is my best friend andi made tons of friends. My life was going good for once. I had boyfriends, flings, stolen kisses but I was enjoying my new found freedom and no-one was taking that away. Then I met "Bob", nice guy, his parents were regulars at the pub, started dating, turned serious and before I knew it he proposed by the lake (and all i could think was he was kneeling in duck poo,maybe i should of seen that as a sign?)

One night we had a party, I was play fighting with his mate andmy finger swelled up, I thought i had broken it but was too drunk to care and it had gone the next day. A few days later it came back but i ignored it. I started getting really tired, causing endless arguements with my future mother-in-law who believed everyone should be dressed by 9am on a sunday!!! When my philosaphy is sunday are made for seeping (now more than ever)

The joint pain movd to my wrist, then my elbows, then my knees and feet. So after months of putting it off, due to moving house and geting a new job in an office, which i hated, I agreed to go see the GP, "it's probably just growing pains, take some Ibruprophen" he said. So I did and the pain got worse and more frequent, often crippling me, my fiance had to bathe me, dress me even light my cigerette!!! So off I go back to the doc on day of a flare, whilst in the waiting room, as sod's law would have it, the flare went when the doc called me in so trying to convince him what it was like and that it was getting worse was hard work. "I'll give you some painkillers" he said. So off I trot with them but no pain so i didn't take them until the next morning when I awoke in agony but had to go to work, so i popped a new pill and headed off. As I got to work my boss asked if i was drunk, I laughed at her replying, "I know I'm a bit naughty sometimes but come on it 9am for god sake" little did i know i was slurring my words, the left side of my mouth had drooped downwards and I couldn't keep my eyes open when I sat at my desk, needless to say i was sent homet noon and I don't remeber the rest until the next day when y boss was ringing me asking if i was ok!

So off I go to the doc's again but decided to see a different one. She referred me to a rhumetologist at the local hospital after me informing her my dad had recently been diagnosed with rhumetoid arthritus and because my symptons were the same andmy age, they wanted to check me out. Apparently the don't believe in sympathy pains.

I go to see Dr.Useless (not his real name) he examines me, says its growing pains!!!!! at the ageof 20!!!! I ask you!!!!! Not convinced I request a blood test, he allows this and sends me on my merry way.

A few months pass, my relationship breaks up for various reasons, partly due to another man, "Fred" and the fact that Bob was a controlling, manipulative idiot. Come to think of it, my flares were worse when Bob was around.

Fred and I become close. I recieve a letter from the hospital, my auto-immune test came back postive,can I come in for a chat.

Upon arrival I was greeted by an anxious looking nurse who handed me a pot and asked me to pee in it, then to go into the doc.

Doc: "How have you been?"

Me: "I've been off work feeling run down" - I was stressed with work, houses, ex's and I was losing my hair

Doc:" I thnk you have Lupus, but you only have one sympton, joint pain, so I can't diagnose it officially"

Nurse: "She had blood and protein in her urine"

Doc: "Ohshe'll be ok, read this lealet and if you develop any moe symptons let us know, thank you.Bye"

Me: "erm ok bye"

Nurse "did you understand that love?"

Me "No, I'll er read the er leaflet er I want to go home, come on Chelle"

I read the leaflet and turned a lighter shade of pale. I had every sympton, except the skin rash. I rang the hospital and spoke to the nurse expressing my concerns, but heard nothing back.

I phoned my mum in shock and told her, she googled it and told me everything about the disease, I sat and I cried and opened a bottle of red wine.

Fred came home and I told him, I don't think he understood as he had never heard of it and I hadn't told him all the symptons until later but he still didn't get how seroius it was.

The joint pain continued, as did the hair loss but thankfully I had a lot of hair so no-one noticed. I miss alot ofwork and when i did go I was usually sent home. I even went to casualty with a suspected broken collor bone because I didn't want to admit i had this disease from fearof losing my job and not being able to get another. Even the doctors there didn't pick it up and aid i had dislocated it, I hadn't it was the way I was stood on the x-ray!

I began to live with it and try to carry on as normal, I taught myself to do things with my left and when my right had swollen up, I could walk well hop upstairs on one foot. Ijust delt with it.

Then the nightmare truely began.

I got pregnant, I was over the moon, as was Fred who had longed for children longer than I, he was 10 years older. This was November I was 21.

Morning sickness turned into 24hr sickness, my ankles turned into flotation devices, my hair was getting thiner and really greasy.

Christmas came and went, all the while I'm saying something isn't right and all i got i reply was "your not sick your pregnant" when I wasn't sleeping or had my head in the toilet. I went to see the GP again, a different one again. He looked at me and saidI had an ear infection and gave me drops.

I woke up one day looking like Slyvester Stallones Mum!! We rang the emergency doctor and went to see him, he said it was a sinus infection and couldn't give me anything because of the baby but drink Ribena, that will help.

I went to bed, not being able to stand the light, of any kind any longer.

I was being force fed brocolli for the baby, drinking water and bringing it all straight back again. My concern was for the baby, not me, surely, that can't be good for it? So back off to the doc. Dr. Saravannah (named and shamed) said i wasn't clinically dehydrated because my tongue was wet (during which time I was trying not to be sick so my mouth was filled with saliva) so he couldn't do anything and sent me home, obviously anxious for his mince pies.

I went to bed and stayed there.

New Year's Eve, I sent Fred out beause he was driving me nuts fussing over me when all I wanted to do was sleep.

The fireworks started, the dog got scared so she got in bed with me.

Unbeknowns to me the water pipe had burst outside from the cold and our water had gone brown andwas loaded with sediment of god knows what. Due to the fact I was that dehydrated, I didn't notice and drank glass after glass in the dark, of course bringing it back again.

Fred comes home we say our Happy New Years and he passes out.

Back to sleep I go, hot, thirsty and exhausted, thinking of that seen in The Hole when Kiera Knightly is dying, pretty similar to the way i felt.

NewYears Day arrives and a get this excruciating pain in my legs and feet, i can't begin to describe to you just how painful this was. It wasn't Lupus joint pain, it was something else,burning deep in my bones.

I screamed to be taken to hospital and after a couple of proests from Fred and Mum about it being busy on a night like this, I won and we went.

We got there I was in to much pain too think properly. I begged them to make it stop. Reluctant to give a pregnant woman anything,they took blood and urine.

As soon as I had wee'd they knew. My wee was a disgusting shade of brown. My kidneys were failing, rapidly!

We told them about the Lupus.

They finally gave me Tramadol to calm me down and to stop the pain. I don't remember much after that.

I had developed a rash in this time which covered me from below my breast, chest, face, scalp, ears, neck, back and even the soles of my feet. Apparently it looked like port wine stains,but I wouldn't look, I could tell it was bad by the way people looked at me.

I was diagnosed with SCLE and Lupus Nephritus at grade 4 (grade 5 being the highest) my kidneys were 20% functioning.

They pumped me full of steroids 650mg a day and told me they would start me on chemo when i got to the specialist hospital. The baby had seemed to have been forgotten.

My Grandma came to see me,said a prayer.

I was transferred to another hospitalwhich specialised in Lupus and kidneys.

I had more meds, biopsies, scans, blood tests, than you could shake a stick at.

Finally they told me I had to terminate my pregnancy to save my life. Now I can't really go into detail here becaue I don't really remember,I seem t have blocked it out of memory. Some of it I remember, lke how they made me wait three days before doing it and how no-one would listen when i said no and how the porter who took me to theatre looked like my dead grandad, the horrific induced labour I was put in and the morphine to calm me down. Everything else is too painful to speak of even now.

A week later I was allowed home after my two week stay in hell. I went in a size 10 and came out a size 14!!! uk sizes

I moved back to my mum's, who luckily wasn't working at the time and could care for me full time.

I ballooned from a mixture of the steroids and water retention to the point of not being able to walk downstairs for a week. I was put on water tablets and I'm not kidding, I wee'd every fifteen minutes i was on that many.

I sank into sever depression. I was in denial about my baby for a long time, to the point of believing i was still pregnant and maybe they had missed, because I wasn't menstrating.

The rash turned into acne, my hair fell out completly, I went up to a size 24, I didn't rcognise myself in the mirror.

I was heartbroken.

I felt unattractive and couldn't understand why Fred wanted to kiss me.

Fibromyalgia soon set in and that and the skin pain mixed together made it impossible for people to touch me witout me bursting into tears.

This put a strain on our relationship and we missed each other terribly but I needed care so had to stay home. I wouldn't go out because I thought people were looking at me lke i was a freak, on par with the elephant man.

In the end, Fred broke my heart. He still wanted children, I'm desperatly afraid of trying again, knowing the decision would not be the same under those circumstances again. He wanted to knowif he was wasting his time with me, so I told him to go find someone who could have children, so he did, after much grovelling and guilt on his part, he got married a year later.

I lost all my friends i mentioned earlier, except for three. These girls have stuck by me and kept me sane,well almost.

Everyone moved on and I'm still stuck here, in bed, or in pain, no plans being made, no invitations to anywhere, taking my endless supply of meds.

I look at my meds sometimes and wonder what if?.......... but I've come this far, pyhsically anyway, perhaps not mentally, those scars tkae longerto heal.

On my baby's birhday i bake a cake and sing her a lullaby every night. I miss her more than anything. I named her Jesse.

During all this time I also lost my job and my cat died and then my nan died too whom i was very close to.

I got a new kitten for my birthday and he keeps me alive, he loves me unconditionally, he won't leave me because of my disease.

I often look back on my life and realise I never really did anything to be proud of and then I look to the future and wonder if I ever will?

I'm so desperate to get back to work, to go out dancing again, smoke a cigerrete ha ha to not wake up and take meds, to be able to plan ahead without cancelling because i'm ill, to be normal.

The story continues..........................................

Vicki Bradley

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