# 9

Sep 27

I saw the specialist in UK. We spoke about the sulphur allergy, the test results and the steroids. Don't think the steroids work best with me - since I had fever three times the week before whilst on a course of steroids, and the dangers of long term usage is worrying. Specialist suggested I try other treatment when I return but said I'd have to wheen off the steroids, so was given a lesser dosage of that.  The allergy was questioned. I wonder why Africa and the doctors/health care there is disregarded so much here, especially when I've found it to be so much better than here - and anyone from southern africa can attest to this.

The flight across the world for answers was an adventure.  I had fever on the plane, and breathing was difficult. I need to be careful, I need to stop smoking and find an alternative way to deal with the stress.  A healthier lifestyle too perhaps. More research required on all this. 

On Oct 3 saw a specialist in SA.  I found out I've lost 20kg so far with this.  A definite plus, even though at times I do really look "sick". I see it in my eyes sometimes, I hate not recognising myself in the mirror. The specialist said in one visit what it took the one here 15 weeks to say.  I felt more comfortable with the decision, the trial of the medication and that the treatment was the best considering the life long usage of it. I've got a follow up appointment in January, since thats when i plan to visit "home" next.

I felt better in SA, cant explain it, but I do.  Healthier.  The weather, the people, the peace of mind from the appointment there perhaps.  Or maybe all those.

Oct 13 - I had a pain in shoulder / back.  So bad it brought tears.  It's sometimes too much to  handle, and it's hard to understand or explain.  I seem to need rest. I never knew it were possible to not only sleep so much but I need it.

The steroids do help somewhat, but they keep me up until 1am. I'm wheening off them now and will begin other treatment today.  Two weeks of both, which hopefully wont be a bad thing.

I've been thinking more about a friend's suggestion to get more involved in organisations or groups on lupus.  To find out more, and do something to help people out there, like myself who find their world changed suddenly like this.

# 8

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.

# 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.

# 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!

# 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)

# 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!

# 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.