Tuesday 4 March 2014
Hey guys! I come bearing good news for once.
Those of you who know me and those of you who follow this blog will know last year was a pretty shitty year for me - Lupus was troublesome and wreaking havoc with my body (and my soul) I was bed-bound most of the time, I was diagnosed with another life-long, incurable illness, I had to give up my job, I was told not to consider starting a family, I was in a lot of pain mentally as well as physically and to put it bluntly, it was fucking crap. I'm pretty sure this blog saved me from having a break down and of course the support of my fiancé, family and friends - you have all been amazing. Anyway, this year has started off very positively indeed....
A few weeks ago I went to the Lupus unit at St Thomas' Hospital to see Dr Kumashta who is the Lupus pregnancy doctor. I saw him exactly a year before purely because I wanted to know what Sami and I would be up against once we decided to start a family. We had no intentions of starting at that time but we wanted all the information so we were prepared. However, nothing could have prepared me for what the doctor said to me.
I ended up going to the appointment on my own because the weather was really bad, it was snowing heavily so I didn't want my Mum to leave the house as she had a bad back and as I thought Mum was coming with me I hadn't asked Sami to take the time off work. I wasn't bothered about going on my own as I just thought I'd go along and we'd have a nice little chat but that wasn't the case. He told me that as my lupus was severe we shouldn't even consider having a child as it would put me and the baby at risk. He also told me I had 'sticky blood' which could cause miscarriages including later on in the pregnancy. He told me it wasn't impossible for me to have a baby as he'd seen women who had 10, 12 and even 13 miscarriages before giving birth to a healthy baby. I was shocked. He was a lovely doctor and held my hand and told me that it's not impossible but he wanted me to know the facts. Obviously I was devastated and on the way home I nearly passed out. It turned out I had labyrnthitis (a severe ear infection) but at the time I thought it was because I was so upset!
I phoned Sami in tears and he was so supportive saying, 'Don't worry, we will get through this, just because things might not turn out the way we planned it doesn't mean we won't be happy.' He felt bad for not being there with me and so did Mum but none of us knew that was going to happen! I wasn't aware of the sticky blood which had shown up in my previous round of blood tests so wasn't expecting to be told about that and the implications on pregnancy. Sadly, that appointment set the tone for the rest of the year which was awful.
This year however is different. When I saw Dr Kumashta a few weeks ago he told me that seeing as my Lupus has been so quiet recently he would give me the green light to go ahead and start a family. He said my bloods are all normal and although I would have to be kept an eye on, the likelihood is my pregnancy would be fine, he also said my chance of miscarriage is now the same as any other healthy woman. I told him this is great news as Sami and I are getting married in October. Mum came with me this time and we left the Lupus Unit (for the first time ever) with smiles on our faces.
I saw my regular Lupus doctor yesterday for my quarterly check up and he said my bloods are all good and as a result I am able to reduce my medication. I am DELIGHTED by this. I am now on the least amount of medication I have been on since my diagnosis. He also said he would classify my lupus as mild. He was quick to say I know it might not feel mild at times but in the medical world we'd class it as mild because it's not likely to get so bad you end up with kidney or heart failure. Wow, I never thought I'd be so happy to hear someone say 'The illness you have is horrible but not so horrible you'll die from it.'
I spoke to him about the night sweats I suffer with as to me, apart from the fatigue, they are my most distressing symptom (yes, worse than the pain) as they prevent me from getting a good nights sleep, they make me feel disgusting and I just hate them but he said they have to go under the 'just have to live with it' file. So, there's nothing they can do about it. But hey, there are worse things in life and overall the appointment was really positive so I shouldn't complain.
It's great that Lupus wise I'm well at the moment but I do still suffer with the fibromyalgia (see post titled 'Fibromlyagia, a brief explanation' before this one for more information) and unfortunately there's no cure for that either. My only saving grace is that Fibro isn't life-threatening like Lupus so at least I don't have to worry about it killing me. Lupus is always a worry because it can cause organ damage but at least with the fibro its not dangerous.
It would seem my decision to give up working full-time was the right thing to do. I have noticed a significant improvement and even my blood tests are fine now. It was one of the hardest decisions I ever had to make and I'm so glad it's not a decision I regret. I guess Jack Osborne was right when he said 'Adapt and Overcome' after he was diagnosed with MS. The way I see it, is you're not the same person after being diagnosed with a life-long illness so you can't live the same life.
So there you have it, bring on the rest of 2014!!!
Hey guys! I come bearing good news for once.
Those of you who know me and those of you who follow this blog will know last year was a pretty shitty year for me - Lupus was troublesome and wreaking havoc with my body (and my soul) I was bed-bound most of the time, I was diagnosed with another life-long, incurable illness, I had to give up my job, I was told not to consider starting a family, I was in a lot of pain mentally as well as physically and to put it bluntly, it was fucking crap. I'm pretty sure this blog saved me from having a break down and of course the support of my fiancé, family and friends - you have all been amazing. Anyway, this year has started off very positively indeed....
A few weeks ago I went to the Lupus unit at St Thomas' Hospital to see Dr Kumashta who is the Lupus pregnancy doctor. I saw him exactly a year before purely because I wanted to know what Sami and I would be up against once we decided to start a family. We had no intentions of starting at that time but we wanted all the information so we were prepared. However, nothing could have prepared me for what the doctor said to me.
I ended up going to the appointment on my own because the weather was really bad, it was snowing heavily so I didn't want my Mum to leave the house as she had a bad back and as I thought Mum was coming with me I hadn't asked Sami to take the time off work. I wasn't bothered about going on my own as I just thought I'd go along and we'd have a nice little chat but that wasn't the case. He told me that as my lupus was severe we shouldn't even consider having a child as it would put me and the baby at risk. He also told me I had 'sticky blood' which could cause miscarriages including later on in the pregnancy. He told me it wasn't impossible for me to have a baby as he'd seen women who had 10, 12 and even 13 miscarriages before giving birth to a healthy baby. I was shocked. He was a lovely doctor and held my hand and told me that it's not impossible but he wanted me to know the facts. Obviously I was devastated and on the way home I nearly passed out. It turned out I had labyrnthitis (a severe ear infection) but at the time I thought it was because I was so upset!
I phoned Sami in tears and he was so supportive saying, 'Don't worry, we will get through this, just because things might not turn out the way we planned it doesn't mean we won't be happy.' He felt bad for not being there with me and so did Mum but none of us knew that was going to happen! I wasn't aware of the sticky blood which had shown up in my previous round of blood tests so wasn't expecting to be told about that and the implications on pregnancy. Sadly, that appointment set the tone for the rest of the year which was awful.
This year however is different. When I saw Dr Kumashta a few weeks ago he told me that seeing as my Lupus has been so quiet recently he would give me the green light to go ahead and start a family. He said my bloods are all normal and although I would have to be kept an eye on, the likelihood is my pregnancy would be fine, he also said my chance of miscarriage is now the same as any other healthy woman. I told him this is great news as Sami and I are getting married in October. Mum came with me this time and we left the Lupus Unit (for the first time ever) with smiles on our faces.
I saw my regular Lupus doctor yesterday for my quarterly check up and he said my bloods are all good and as a result I am able to reduce my medication. I am DELIGHTED by this. I am now on the least amount of medication I have been on since my diagnosis. He also said he would classify my lupus as mild. He was quick to say I know it might not feel mild at times but in the medical world we'd class it as mild because it's not likely to get so bad you end up with kidney or heart failure. Wow, I never thought I'd be so happy to hear someone say 'The illness you have is horrible but not so horrible you'll die from it.'
I spoke to him about the night sweats I suffer with as to me, apart from the fatigue, they are my most distressing symptom (yes, worse than the pain) as they prevent me from getting a good nights sleep, they make me feel disgusting and I just hate them but he said they have to go under the 'just have to live with it' file. So, there's nothing they can do about it. But hey, there are worse things in life and overall the appointment was really positive so I shouldn't complain.
It's great that Lupus wise I'm well at the moment but I do still suffer with the fibromyalgia (see post titled 'Fibromlyagia, a brief explanation' before this one for more information) and unfortunately there's no cure for that either. My only saving grace is that Fibro isn't life-threatening like Lupus so at least I don't have to worry about it killing me. Lupus is always a worry because it can cause organ damage but at least with the fibro its not dangerous.
It would seem my decision to give up working full-time was the right thing to do. I have noticed a significant improvement and even my blood tests are fine now. It was one of the hardest decisions I ever had to make and I'm so glad it's not a decision I regret. I guess Jack Osborne was right when he said 'Adapt and Overcome' after he was diagnosed with MS. The way I see it, is you're not the same person after being diagnosed with a life-long illness so you can't live the same life.
So there you have it, bring on the rest of 2014!!!
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