Sep 22
Another bad night. Had the worst fever in months last night. Couldn't even put on warm clothes easily, I was shaking so badly all over. It went away after an hour with another painkiller, but the aching body stayed all night. And was still there when I woke up. So I stayed at home today. The rest was good, I feel better now.
Thursday, 22 September 2011
Wednesday, 21 September 2011
# 7
Sep 21
Didn't sleep well last night. Whole body ached. Day was ok, I suspect I have the steroids to thank for that. Now back to aching suddenly from nowhere, very much so. Waiting for the pain killers to kick in. I feel completely drained, exhausted, like my body doesn't belong to me. I hate the lack of energy, the pain. Lupus uses me as a punching bag it seems, as and when it chooses. Looking forward to treatment and all this going away.
Didn't sleep well last night. Whole body ached. Day was ok, I suspect I have the steroids to thank for that. Now back to aching suddenly from nowhere, very much so. Waiting for the pain killers to kick in. I feel completely drained, exhausted, like my body doesn't belong to me. I hate the lack of energy, the pain. Lupus uses me as a punching bag it seems, as and when it chooses. Looking forward to treatment and all this going away.
Tuesday, 20 September 2011
# 6
"Colour me gone. Bold shades, with hazy hues. Rainbow delight"
Sep 20
Todays tests done and over with, thank goodness. It wasn't a good day either. (Maybe linked to not eating properly) Aching body and fever. The pain killers helped, as did the hour or so sleep I had when I got home. I'm so wary of the amount of tablets I'm taking/have taken. It helps and I need it, but it can't be good long term. So I've stopped the allergy tablets somewhat, while on the steroids. I only take on occasions I fell itchy on areas the rash appears.
As a good friend of mine says - Better wellness day tomorrow!
Sep 20
Todays tests done and over with, thank goodness. It wasn't a good day either. (Maybe linked to not eating properly) Aching body and fever. The pain killers helped, as did the hour or so sleep I had when I got home. I'm so wary of the amount of tablets I'm taking/have taken. It helps and I need it, but it can't be good long term. So I've stopped the allergy tablets somewhat, while on the steroids. I only take on occasions I fell itchy on areas the rash appears.
As a good friend of mine says - Better wellness day tomorrow!
Monday, 19 September 2011
# 5
Sep 19
Today was a good day. No symptoms felt. The steroids help, but I do get that long term use would be bad for me. Blood test results from last Monday all fine. Need to call in the morning to get a copy of them for SA. More tests tomorrow. Not looking forward to this one. Total violation. So not cool!
I called the specialist for a follow up appointment, nothing this week next week instead - more waiting... Its a good thing I took my mothers share of patience (Gotta joke, better than crying)
Today was a good day. No symptoms felt. The steroids help, but I do get that long term use would be bad for me. Blood test results from last Monday all fine. Need to call in the morning to get a copy of them for SA. More tests tomorrow. Not looking forward to this one. Total violation. So not cool!
I called the specialist for a follow up appointment, nothing this week next week instead - more waiting... Its a good thing I took my mothers share of patience (Gotta joke, better than crying)
Sunday, 18 September 2011
# 4
Sep: Still unwell. Good days, bad days, really shit days and "high" days. Frustration at the lack of a response or the lack of treatment felt muchly. Other factors contribute to stress levels, but my first and most important focus needs to be my health.
Fri 9th. Went to see the GP. Shortness of breath, and pain in abdomen. Felt more when taking sharp intakes of breath. GP suspected spreading of disease, couldn't at first hear my left lung. Said it was possible inflammation of the lung which happens with lupus and prescribed a dose of steroids. Said as the GP had the month before that I need to start taking treatment soon (I know this!) More blood tests Mon 12th. Steroids helped. Specialist called back finally Wed, and left a message, to say he would call back. Got home to find a letter. He wanted more details of the sulphur allergy. No alternative medication mentioned. Fri 16th, Specialist called again. We talked about my allergy, he told me about alternative medication one which is harder to get. Both with worse side effects then the one he'd prescribed (bearing in mind, this is something I'll need to take daily for the rest of my life) I tell him I'm going to SA to see a specialist there (10 weeks to wait for treatment is a joke) and mention breathing issues, and GPs thought it could be spreading or just be inflammation. Specialist called back and told me to come into the hospital where he is. He was worried the breathing issues could be linked to pleurisy or blood clots on my lung which would mean I couldn't fly and which happens with young woman with lupus. CAT SCAN, Chest X RAY, Blood tests, and an ECG done. Left hospital at 8, still waiting on results for lungs and heart. Brother got a response on his query for me to lupus uk foundation on some kind of clarification/alternative/anything. They wanted more information.
I celebrated my 32nd birthday yesterday, happy that I could be home and not in hospital getting more tests done. Thankfully the test results were all fine, and the new symptoms are most likely linked to inflammation. I have a follow up this coming week with the specialist and can still fly to SA soon to see a specialist there, and hopefully get the damn treatment already!
Fri 9th. Went to see the GP. Shortness of breath, and pain in abdomen. Felt more when taking sharp intakes of breath. GP suspected spreading of disease, couldn't at first hear my left lung. Said it was possible inflammation of the lung which happens with lupus and prescribed a dose of steroids. Said as the GP had the month before that I need to start taking treatment soon (I know this!) More blood tests Mon 12th. Steroids helped. Specialist called back finally Wed, and left a message, to say he would call back. Got home to find a letter. He wanted more details of the sulphur allergy. No alternative medication mentioned. Fri 16th, Specialist called again. We talked about my allergy, he told me about alternative medication one which is harder to get. Both with worse side effects then the one he'd prescribed (bearing in mind, this is something I'll need to take daily for the rest of my life) I tell him I'm going to SA to see a specialist there (10 weeks to wait for treatment is a joke) and mention breathing issues, and GPs thought it could be spreading or just be inflammation. Specialist called back and told me to come into the hospital where he is. He was worried the breathing issues could be linked to pleurisy or blood clots on my lung which would mean I couldn't fly and which happens with young woman with lupus. CAT SCAN, Chest X RAY, Blood tests, and an ECG done. Left hospital at 8, still waiting on results for lungs and heart. Brother got a response on his query for me to lupus uk foundation on some kind of clarification/alternative/anything. They wanted more information.
I celebrated my 32nd birthday yesterday, happy that I could be home and not in hospital getting more tests done. Thankfully the test results were all fine, and the new symptoms are most likely linked to inflammation. I have a follow up this coming week with the specialist and can still fly to SA soon to see a specialist there, and hopefully get the damn treatment already!
# 3
July: It took two weeks for the letter to be received by the GP, after much frustration and several calls and visits to the GP. I had finally gotten the medication. My excitement was likened to that of a druggie. But I was happy at the thought of finally starting treatment. I realised when about to take my first dose, that the medication had sulphate. I went back to see the GP, with the question, "Is sulphur and Sulphate the same, and could they both affect me or be linked to the Steven's Johnson Syndrome I had"? The GP could not answer this question. I asked for either clarification on this or an alternative medication of treatment.
Aug: I travelled back to SA, frustrated, wanting answers, wanting help. I saw the GP there, who told me I shouldn't take the medication with sulphate. He mentioned 3 other alternatives but could not prescribe anything other than some steroids to help with the symptoms. I needed to see a specialist there. He tried to get me an appointment but because I was only there a short time. I could not get one.
Back here, I still had no answers. I chased up several times, went to see the GP, who could only write to the specialist. I chased up the specialist several times too.
Aug: I travelled back to SA, frustrated, wanting answers, wanting help. I saw the GP there, who told me I shouldn't take the medication with sulphate. He mentioned 3 other alternatives but could not prescribe anything other than some steroids to help with the symptoms. I needed to see a specialist there. He tried to get me an appointment but because I was only there a short time. I could not get one.
Back here, I still had no answers. I chased up several times, went to see the GP, who could only write to the specialist. I chased up the specialist several times too.
# 2
It all started towards the end of March. I had fever, sore aching body, exhausted/tired, rash, swollen face. All symptoms one would associate with a viral disease, and Glandular fever was what was suspected. I had several blood tests and spent two weeks off work. Banging headaches, mouth ulcers and nausea symptoms started. I was prescribed steroids, allergy tablets and told to continue on the pain killers. The tests were fine and the GP put it down to a severe allergic reaction - to what he didn't know. I was back at the doctor several weeks later still not well, and had lost loads of weight. He took further blood tests, and referred me to a specialist (Dermatologist). The Dermatologist took further blood tests and put me on antibiotics. They still had no clue
In June I travelled to SA, still feeling relatively unwell. My eyelids had started peeling and the night I arrived, under and around my eyes were swollen. I developed the rash again, and what seemed like all the symptoms I'd previously had. I went to see a GP there who sent me for two blood test. They suspected after examining me that it was either something with my kidneys or immune system. The doc gave me more steroids, antibiotics, allergy tablets and painkillers, which all helped. When the blood test results came back, my kidneys were fine, but the other test was positive and the GP told me he suspected I had something called Lupus. He explained that it was not contagious, was not curable but was treatable. He also told me I'd need to see a Rheumotologist when I got back. I don't think I handled the possibility of such well that night.
When I returned with the blood test results I went to see the GP. The GP I'd seen, one that I had not seen before, disregarded the tests, told me I couldn't have lupus, told me it was an allergy which I probably wouldn't ever find out to what, and told me to keep a diary of what I ate etc. I asked to be referred to a Rheumotologist.
I saw the Rheumotologist a few weeks later. One of the tests the Dermatologist had done was the same as the one done in SA, with the same positive results. The Rheumotologist had me do a chest x-ray, a scan and several other blood tests. I saw the Dermatologist for a follow up appointment and was diagnosed by the Rheumotologist with mild Lupus. Medication was explained to me, a drug used with Malaria but also effective with people with mild lupus of skin and joints. He explained that the lupus could spread but with treatment the chance of that were reduced. He also said he'd write to the GP with the recommendation and that the GP would prescribe the medication as I had to be monitored for the first few months to see the medication agreed with me. Finding out what I had was a relief, but dealing was something I think I avoided doing. I was happy that I would get treatment soon and begin to "heal".
In June I travelled to SA, still feeling relatively unwell. My eyelids had started peeling and the night I arrived, under and around my eyes were swollen. I developed the rash again, and what seemed like all the symptoms I'd previously had. I went to see a GP there who sent me for two blood test. They suspected after examining me that it was either something with my kidneys or immune system. The doc gave me more steroids, antibiotics, allergy tablets and painkillers, which all helped. When the blood test results came back, my kidneys were fine, but the other test was positive and the GP told me he suspected I had something called Lupus. He explained that it was not contagious, was not curable but was treatable. He also told me I'd need to see a Rheumotologist when I got back. I don't think I handled the possibility of such well that night.
When I returned with the blood test results I went to see the GP. The GP I'd seen, one that I had not seen before, disregarded the tests, told me I couldn't have lupus, told me it was an allergy which I probably wouldn't ever find out to what, and told me to keep a diary of what I ate etc. I asked to be referred to a Rheumotologist.
I saw the Rheumotologist a few weeks later. One of the tests the Dermatologist had done was the same as the one done in SA, with the same positive results. The Rheumotologist had me do a chest x-ray, a scan and several other blood tests. I saw the Dermatologist for a follow up appointment and was diagnosed by the Rheumotologist with mild Lupus. Medication was explained to me, a drug used with Malaria but also effective with people with mild lupus of skin and joints. He explained that the lupus could spread but with treatment the chance of that were reduced. He also said he'd write to the GP with the recommendation and that the GP would prescribe the medication as I had to be monitored for the first few months to see the medication agreed with me. Finding out what I had was a relief, but dealing was something I think I avoided doing. I was happy that I would get treatment soon and begin to "heal".
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