Monday 8 April 2013
I had my quarterly check up at St Thomas' Hospital in London today. It went OK. I wanted to discuss my current medications as it seems like they aren't working. The doc said he doesn't want to change them just yet as we need to figure out why I've had such a bad few months. He thinks all the infections I've had could have triggered the lupus to flare so badly, although he is not entirely sure. He has therefore decided to keep me on current meds plus steroids. Fecking steroids. (See post titled 'steroids' for information on why I hate them) I have to take a high dose for a couple of weeks to see if it makes me feel better then we'll discuss the results in July.
These appointments can be very frustrating because you want to go there and hear them say, "Here you go, take this and you'll be fine, your lupus will go away forever!" Obviously that doesn't happen so you have to just accept what they tell you and get on with it.
I only had 9 blood tests today (I usually have between 15-20, he's very thorough this guy!) He was checking my renal and liver profile and various other things such as certain anti-bodies that cause problems in Lupus, it's amazing what they can tell from your blood! He said he will write to me if he finds anything 'exciting'. He really is a nutty professor. I love him, with his elbow patches and bow ties.
We had quite a long chat today and he told me that when someone with Lupus gets an infection or even just a common cold its worse than in a normal person. Apparently we feel it a lot more (plus an infection/cold triggers the lupus to flare so on top of feeling ill you get all the joint pains/fatigue etc) I am so glad he confirmed this and I'm not just the worlds biggest wimp. I had tonsillitis last week and I think it's the most ill I've ever felt! Talking of being a wimp, the psycho nurse who did my blood test today really hurt me! I actually said 'ouch!' out loud. I think she was using my arm as some kind of therapy. You know like when you go to a boxing class and you imagine the punch bag to be someone you hate? Yeah, well she was definitely imagining stabbing someone she hates. I'm not sure if I should be doing her for assault or not.
The doc also told me today to drink gin and tonic. For medicinal reasons. Apparently the quinine in tonic is good for lupus. I said, "What's the gin for then?" He said, "Why not?" That's fine by me!
I'm currently writing this in bed - I am EXHAUSTED today. I got home about 2pm and have been asleep most of the day (it's 7pm now). I usually go for a nice lunch and trip round the shops after a hospital appointment (I go and visit the shoes in Selfridges) but today I had to come home =0( and get in my pj's. Sami even had to collect me from the train station because I couldn't face the 15 minute walk home. What a joke. I wonder if I can get a mobility scooter based on being too tired to walk anywhere?
I had my quarterly check up at St Thomas' Hospital in London today. It went OK. I wanted to discuss my current medications as it seems like they aren't working. The doc said he doesn't want to change them just yet as we need to figure out why I've had such a bad few months. He thinks all the infections I've had could have triggered the lupus to flare so badly, although he is not entirely sure. He has therefore decided to keep me on current meds plus steroids. Fecking steroids. (See post titled 'steroids' for information on why I hate them) I have to take a high dose for a couple of weeks to see if it makes me feel better then we'll discuss the results in July.
These appointments can be very frustrating because you want to go there and hear them say, "Here you go, take this and you'll be fine, your lupus will go away forever!" Obviously that doesn't happen so you have to just accept what they tell you and get on with it.
I only had 9 blood tests today (I usually have between 15-20, he's very thorough this guy!) He was checking my renal and liver profile and various other things such as certain anti-bodies that cause problems in Lupus, it's amazing what they can tell from your blood! He said he will write to me if he finds anything 'exciting'. He really is a nutty professor. I love him, with his elbow patches and bow ties.
We had quite a long chat today and he told me that when someone with Lupus gets an infection or even just a common cold its worse than in a normal person. Apparently we feel it a lot more (plus an infection/cold triggers the lupus to flare so on top of feeling ill you get all the joint pains/fatigue etc) I am so glad he confirmed this and I'm not just the worlds biggest wimp. I had tonsillitis last week and I think it's the most ill I've ever felt! Talking of being a wimp, the psycho nurse who did my blood test today really hurt me! I actually said 'ouch!' out loud. I think she was using my arm as some kind of therapy. You know like when you go to a boxing class and you imagine the punch bag to be someone you hate? Yeah, well she was definitely imagining stabbing someone she hates. I'm not sure if I should be doing her for assault or not.
The doc also told me today to drink gin and tonic. For medicinal reasons. Apparently the quinine in tonic is good for lupus. I said, "What's the gin for then?" He said, "Why not?" That's fine by me!
I'm currently writing this in bed - I am EXHAUSTED today. I got home about 2pm and have been asleep most of the day (it's 7pm now). I usually go for a nice lunch and trip round the shops after a hospital appointment (I go and visit the shoes in Selfridges) but today I had to come home =0( and get in my pj's. Sami even had to collect me from the train station because I couldn't face the 15 minute walk home. What a joke. I wonder if I can get a mobility scooter based on being too tired to walk anywhere?
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