But you look so well!

I had the blood test done yesterday. IT started well as I got a disabled parking bay near the door.

I went to the new local hospital and was treated so nicely it was such a surprise. There was some confusion as to where I was supposed to go. The receptionist thought I should have been in the Day hospital and not in Out Patients. But another receptionist stopped us going to the other end of the hospital. When it hurts to walk then going to another department unnecessarily is a big deal. So I was grateful to her for making sure I was in the right place and not being sent all around the hospital. The people who design hospitals have no idea of what it is like to have restricted mobility. They build these new good looking buildings, but the departments are all over the place and the amount of walking can be a problem.

The nurse who was doing bloods in one room recognised me. She remembered that it is difficult for them to get blood from me and made sure the man who was going to take my blood realised that it would not be easy. She did not make it seem like it was my fault that they have trouble. She made me feel cared for and not just another body.

I waited for my turn, which worried the nurse as she thought maybe I was being made to wait too long. I have never caused problems or complained at that hospital, they are just more caring.

Eventually it was my turn. The man asked me where was usually the easiest place to get blood, and I pointed to a place on my left arm. He took notice of me and put the needle where I had pointed, and got blood first time. It was all over in a few seconds, not the prodding and pulling and pushing that others have subjected me to. It just goes to show that those who tell me it is my fault and then put me through pulling and pushing and twisting the needle are in fact just incompetent. They have either not had enough training or they don’t care.

Anyway between the nurse and the young man who took my blood I felt as if I was cared about. It made me realise that this is how it should be and that the atmosphere and experience of the anti coag clinic is wrong.

I also managed a bit of food shopping. Just one shop and my husband did most of the walking for me so that I could cope.

Last night I was in a lot of pain again. My right ankle and left hand were really painful. It is a worry to me when a new joint is causing so much pain. I am sure it means nothing, but I do worry that it means that another joint has arthritis. I do not allow myself to worry about the future, preferring to stay optimistic that I will not get any worse.

Today I have made myself catch up on some paperwork that I had been putting off.

Firstly I did some financial forms. If I had not done it soon we would have ended up with our income being stopped. I made a phone call and the forms were filled in over the phone. So that was one job done.

Secondly I decided to make the phone call my GP had suggested. The anti coag clinic I was attending have been very difficult and would not do a finger prick INR test. They also would not agree to me self testing, this was despite my specialist saying that he thought I should do this. He decided that I was a good candidate for self testing because he realised that I take responsibility for my own health. I make sure that I get the correct treatment. But the anti coag clinic I was attending would not allow me to have a finger prick INR and insisted on a full venous sample. I rang them about two weeks ago and said that I was not allowing them to do a venous sample on me any more. Every time I end up looking like a junkie with numerous holes and bruises on my arms. The end result was that they said unless I did what they say they would not treat me. So my consultant in London is not taken any notice of. He is a consultant at the centre of excellence and yet the local haematologist is able to over rule my consultants treatment. This is wrong and I just cannot accept that someone who has never met me can over ride my specialists treatment. It gets worse when I found out that the local doctor who is over ruling is the one who did the tests for APS in 1999 and even though I tested positive did not do anything. No second test, no treatment, no telling me that I had APS. She just let me continue to walk around with a high risk of having a blood clot. I had had small clots and also a pulmonary embolism before I saw her ten years ago.

The anti coag clinic have decided that as I have been told I have ‘lupus like symptoms’ that means I have lupus and so I cannot have my INR measured by finger prick.

My GP found out that there was a local clinic, nearer than the one I had been attending that did support self testing. So he wrote to them. Trouble is that they have decided to take the same stand about lupus and finger prick INR tests. So when I rang them today they said they will not allow me to go there either. I got them to agree that if I could get my specialist to send them a letter saying he was happy with a finger prick INR test, then they would accept me. After all it is only a mile to that hospital not the 8 miles I have been driving.

It took me about 5 tries at ringing the specialists secretary, but when I got through she thought it would be OK for my consultant to fax a letter agreeing to finger prick tests. I am not going to get my hopes up as too many times recently I have thought things were being sorted out and then they were not.

The last thing I did today was to book a blood test. I have not had my INR done since May, about 6 weeks, and so tomorrow I have to go and get a venous blood test. I am a bit worried about it. For many years I had a needle phobia, but managed to cope with it when I had the PE as I had so many blood tests I had to calm down. However the treatment I have had at the local anti coag clinic has got me panicky about needles again. I will not let it beat me and will get the test done. But I fell myself getting stressed. That annoys me as I see it as being  a wuss and I want to be stronger than that.

The weather has been cooler and wetter today than the last week. My knees and hips and back have been really sore today. But not as bad as my fingers. If this carries on I will have to use the software I have on my computer that means I can speak what I want typed and the computer types it. So far the accuracy has not been good. But then again my typing is not always good. Some days I type anagrams. Been doing that a bit with this blog tonight and keep having to spell check and change things.

Tomorrow I have the blood test booked, but apart from that I have a restful day.

This weather is good for me, it might be hot but it makes my joints feel better. Like I said yesterday it is more of an ache than the stabbing burning. I even went out today.

We went into our local town. Partly to get some food shopping and partly as some of the local churches had an event. There is a ruin of an old church in the middle of  our local High Street and although it is surrounded by shops it is still owned by the church. My husband has been out the last 3 mornings as he is helping with the shopping to get the burgers, bread and water. Then there is a team of people who are barbecuing the burgers and giving them away free. Another group are playing music and singing.

I went along with my eldest two boys and husband and we sat and had a burger. After that we went to the bank as I needed to move money between accounts. Whilst I was there I met a friend of ours who is going to India in two days time. He is married to a lady from India and they are going there to live.

Whilst we were talking, there was a disturbance by my son. He had fallen out of his wheelchair and an elderly man was trying to help him. Only thing the man was a lot smaller than our son, years of using crutches and wheelchairs has caused him to have large upper body muscles. When we looked to see what had happened we found out that a wheel had come off of the wheelchair and the chair had unbalanced. The man had seen the problem and was trying to stop our son falling out and getting hurt.

It just goes to show that there are some gentlemen in this world.

After that we went to see if we could find a bed for our youngest son. As he is as tall as his bed is long he had asked if we could get him another bed. We decided that a double bed would be the best idea when we found out it would cost us £600 at least to get an extra long single bed and then we would have to buy special linen. We managed to get him a double bed and it will be delivered tomorrow morning.

On the way home I commented to my husband how much better I was feeling with this hot weather. The reasons are partly because the heat is good for my joints. They are still hurting, but it is not the stabbing burning pain and more an ache. More like muscular pain.

Another reason for feeling a bit brighter is that everyone slows down in the heat. No one thinks you are odd if you are tired in the heat or if you move slower. So it is not so obvious that I am walking slowly. Or that I am doing jobs slower.

I think the fact that the flowers are out and there are so many birds around is also part of the reason for feeling brighter. After all it is not so easy to feel bad when there are beautiful flowers all around.

I have to be careful of the sun, as it can cause problems for those of us with lupus. I am fortunate that for me it causes something like prickly heat in that I get very red and itchy. But then I have never been one for laying out in the sun.

After we got home I got a phone call from Motability asking if I had decided what I wanted to do. I said that I had chosen which car I would like, but had not finished filling in the paperwork. Now that I am on DLA I can have a car to help me get around. The one I like is automatic, even the hand brake! I find it difficult to pull the hand brake on and even harder to take it off, especially if my eldest son has put it on. This new car has no hand brake, well not a traditional one, but has an automatic one.

The man suggested that when we have finished filling in the forms I ring up the help line as he pointed out if it is filled in correctly it will save time.

It takes 4 weeks for them to OK my choice, then I can order the car which takes about 12 weeks to be delivered. So it will be close to Christmas by the time I get it.

I have never enjoyed the hot weather, in the past the cold winter months were good. I have not  owned a winter coat for years because I have no need. One of my children is similar.

But the last two or three years that has changed. Last year I enjoyed the hot days which was a shock for me as this was new. But the heat means less pain in the joints. As a fair skinned person I have always taken care not to be out in the sun for long so I have not had much of a problem with lupus and sunlight. But the last few days I have felt better than normal. The heat does sap energy, but then again I have less of that on a normal day. Everyone is less active in the hot weather, so I do not look so different.

We had a new shower put in yesterday, at long last we have one that works as a shower should, so I can keep cool by taking a shower. We have a board to put across the bath so I do not have to stand the whole time.

Granted I am hot sticky, I think we ladies call it glowing. But the relief from pain is worth the perspiration. I am not pain free, but so far it is more of an ache and less of a stabbing pain.

The weekend weather is forecast to be a bit cooler than the last few days. But 24C sounds good.

The only thing I have to sort out is why the fan I used today was blowing hot and not cool air.

Today I also managed to download a game that I have been trying to buy for a few days. It would not download but apparently that was due to me using Internet Explorer and when I used Firefox, as suggested by the company I was buying the game from, it worked straight away.

So my day has been spent, watching TV, reading a book and playing a computer game. Oh and a small bit of housework. Tomorrow I am planning to try a trip out to our town, a bit of shopping and a drink in one of the many coffee shops. Also need to find a new bed for our youngest son, at 6ft 3ins he is the same length as his bed. We did ask a local shop how much for a longer bed, the answer was about £600. I think we need to look at a double bed for him. That way he can lay diagonally and then he will have enough length to sleep.