Good Days

It has been a busy two weeks since I last wrote on here.

Firstly I went to see my specialist in London. I had prepared a list of things that I wanted to talk about with him. when I got there I found out that the specialist has taken a sabbatical to do research and those of us who go to Monday clinic are now under the care of a lady doctor. I got to see the registrar (I assume he is a registrar ) he is the doctor that I have seen the last 3 times I have been there, so I was happy to see him. 

He listened to what I said about anti coagulation clinic, I ended up with a rather drama queen like comment of ‘so I just cannot bear having to go to the clinic anymore’

Much to my surprise he was laughing by the time I finished. I had told him about how I feel about this clinic, I had opened up my inner feelings and he was laughing. But he was not laughing at me, he had heard this story so many times before. It seems that many many clinics do not understand how to treat those of us with lupus and APS, so they make up rules, like in my case they say they cannot do the finger prick test, but have to find a vein and stick the needle in. This means, for me a number of attempts to find a vein and also a lot of twisting and pulling and pushing.

The specialist has suggested that I should become more in control of my blood levels, a bit like a diabetic is allowed to test their own blood and adjust their insulin accordingly, he suggested that I should test my blood and adjust my warfarin accordingly. Sadly it does mean that I need to find £300 and something to buy the machine as it is not provided by the NHS. But my parents have already said that they would sort that out for me. I will need to have the clexane injections in the house again, so that if my bloods get too low again then I can inject to stabilise the figure. 

I also spoke to the doctor about two of my children, one in particular has a lot of the symptoms I used to have a child. He told me that for every 5 people he sees with APS 1 of them has a parent, usually a mother, with APS. They have not found out why it seems to run in some families, in fact they say that it is not passed on genetically, but that there seems to be a risk if a parent has an autoimmune condition there seems to be a higher risk of the children having an autoimmune condition. But what interested me is that say a parent has rheumatoid arthritis then the child will not necessarily have the same condition but they may have any of the autoimmune conditions. I am sure one day that they will find out why and how, but for now we have to accept that it is something that is not understood.

Anyway the doctor said that he would be willing to see my children if the GP wanted to refer them to him. Especially the younger one who has more of the symptoms. When I say children they are not little children, my four range in age from 14-24 so not babies any more.

I was so relieved to come away from clinic having been listened to and having had my worries and concerns taken seriously. For a while I have felt that I was being ignored by some of the people I see.

The next bit of good news came on Friday when I got a phone call from the DWP. They asked me some questions about if I had been in hospital or a care home or abroad in the last ??? weeks. I said no to all the questions. Then the lady told me that they had made a decision. I asked if she could tell me to which she said no. Then she realised what she had said and told me that I had been awarded DLA mobility as well as the care part I already had. I was so shocked, I could not believe it, after 8 months they had finally accepted that I was telling the truth. Well that is how it felt to me.

I did not tell anyone other than immediate family until the following Monday when the letter came through the post. Even then I did not want to talk to anyone about it. It was weird after 8 months of arguing about how well I was, to finally get the award brought about mixed emotions for me.

Lastly on Tuesday this week I went for my anti coagulation clinic appointment. It was awful. The first nurse did not talk to me whilst she filled in some paperwork for the previous patient. I was able to clearly read all his private information as she had put his paperwork by me. When she finally did try and get blood she failed and did not even get a drop. But the whole time she was trying to get blood from me she was telling everyone in the room how awful my veins are and how difficult I was. She only spoke to me to call me LOVE.

The second nurse was called over. She again kept calling me LOVE, she dropped the bottle whilst the needle was in my arm and then proceeded to turn around in her chair to get another bottle from the box behind her.All the while she was holding a needle in my arm with her other hand. Not surprisingly she was moving the needle around. Eventually she also gave up. That meant that I had two holes in the same area of my arm where both the nurses had tried to get blood. The place they tried was still bruised from the week before.

The sister finally had a go and got blood. But she was telling the other nurse how it was a problem for her to do this because she was with another patient. Because she was in a hurry she did not press on the gauze. I could not because I had someone holding my other arm where I had two holes which were now oozing blood. So I have a multi coloured bruise on my right arm.

I came away from that clinic feeling as if I had been assaulted. I do not know how I will manage but I will not go back to that clinic again. They have left me feeling scared as to what they will do next time. I felt like a piece of meat and not a person. 

Still the good news outweighs the bad. I am now going to be able to look around for a car. I live less than a mile from our local shops, but because of my health it might as well be 20. I cannot walk into town like the rest of my family. We live too far from the bus route to use the bus, so if I get a car I will be able to get out of the house when I feel like it. I am excited about getting some more freedom. Not that I don’t like spending time at home with my family, but we all need to get out from time to time. Even if it is just to the shop for a pint of milk, or the newspaper.

 

A busy weekend

What a weekend.

Robert finally had his surgery on Sunday morning. They would not do it Friday as he is allergic to anaesthetic, they had planned to do it Saturday, but the doctors ran out of theatre time, so they finally did it Sunday. He was looked after well by the nurses, and was home again Monday afternoon. We picked him up about 1:30 would have been earlier but the hospital seems to only have lifts and they stopped working for a while.

On the way out we visited our friend who is in there, she had not been well in the morning and so we only stayed a few minutes. Robert wanted to pass on his TV and phone credit. They have a system at the hospital where you have a TV and phone by your bed. It costs £3.50 to watch TV and that lasts for 24 hours whether you watch it all the time or just for a few minutes. But they cheat because the only card you can buy is £5. I am sure that they rely on people not using up all the credit. The phone is 10p a min to phone out and anyone calling you pays 20p a min from a BT line. It is all money making.

By the time I got home I was shattered and instead of watching University challenge on TV I slept most of the evening on the sofa.  Then I slept most of the night, and when our daughter had gone to school I slept another couple of hours. I still feel so tired, it must be that now I have relaxed the past few days have caught up with me. Ian, our son who has an autoimmune condition, also did the same thing, in that he did not feel good this morning and so he went back to bed for more sleep. Just proves what I have said for a while now that stress makes him feel worse.

My stomach is a mass of bruises again. The Clexane for some reason is bruising the last few days, so my stomach is sore to touch. I am just waiting for the appointment at the hospital so that I can change over to tablets. That would be easier because I keep forgetting the injection the last few days, but if I had the tablets in my box along with all the other tablets I would not forget. Plus the fact that it is not nice sticking needles in yourself.

Robert has just gone out with his brother. The letter he came home with says that he should get fresh air and exercise, although the exercise bit is all Ian’s because Robert is in a wheelchair. The car has a problem so we are not able to drive it. The decorator came today to put up a bit of wallpaper, and he noticed that there is a bulge on the tyre wall. So I am waiting for a phone call from the garage to say if they can sort it out or if we have to and if so where we must take it.

I am also waiting for a phone call back from the doctor. I saw him two weeks ago about the mass that was found on the CAT scan and so far I have not heard about when I can see a specialist. So today I rang the GP surgery to ask about it. Whilst the Ca-125 result came back within normal range I still would rather get rid of whatever it is in there. Or at least know for sure that there is nothing to worry about. It is the waiting that is not good, I want to know and I want to know now. So I rang the surgery and they will talk to the doctor and ring me back later.

Now all I need to do is to catch up on my study, at least I am only 2 weeks behind, better than this morning, but still bad as I am only in week 3!! It has been hard to get my brain in focus for this course. Ian is doing the same course and he has already started the first assignment which is due in the end of the month. So I had better get on and catch up. No inspiration at the moment though, now if it were a story about sleeping, or stress I would be full of ideas.