A doctor who knew about lupus and APS!!!

Today I had to go for a check up at the hospital. I was diagnosed with ovarian cysts last year and since then they have been scanning me regularly and also blood tests.

I had the scan done last week. They scan your tummy first, a bit like when you are pregnant then they scan internally. This time there was a man in the room. I was told that he was there because they had a new machine and the woman did not know how to use it. As she put it it was like driving a new car, things are in different places. After the stomach scan you have to empty your bladder before the internal scan. When I went back they asked if I minded the man being in the room. This left me with a difficult decision. I thought the man was a sales man or something like that, and did not want him in there, but at the same time what if the woman could not do the scan properly, or missed something because of it being a new machine. So I made sure he would be standing in the corner by the machine and not able to see what was being done. This assured I said ok he could be there. It was later, whilst the scan was being done that I found out he was a radiographer who had done this scan loads of times.

I really wish someone had thought to tell me who he was and not just that he was there to help the woman learn where things were and new functions on the machine.

I was told that the scan results would be available for when I went to clinic today.

Of course life never runs that smoothly and so the results were not in my notes. The doctor had to access them from the computer. He was really friendly and even had a laugh with the nurse about how he has special powers to access certain programmes. Whilst he was trying to access the programme he got a phone call from the IT department who somehow knew what he was trying to do and then talked him through getting my scan results.

The news was that one cyst seems to have gone and the other one has grown bigger. The doctor told me that the mirena coil that I have is probably the cause of the cyst as it is a known side effect. It seems to me that you take meds to control one problem and then end up with a new problem because no drug is without side effects.

The CA125 blood test is to check for ovarian cancer indicators and that apparently is low. Because of that they will continue to monitor me. So I get another of the embarrassing scans in three months and more blood tests.

The doctor was impressing though. He knew about lupus and APS (Hughes Syndrome). He was concerned that I was in pain. He was of the opinion that no one should be in constant pain.

After the appointment I had time to spare. Our eldest son had gone off with the car. Our daughter has gone to stay with my parents for a few days and as the hospital was about half way between our house and my parents our eldest son had said he would take his sister whilst I was at the hospital.

The appointment was quicker than I expected and so I finished a long time before he would be back. I rang him and arranged to meet him at a different place and then got a bus into the town. I was surprised that it cost me £1.50 for a bus journey that took less than 4 minutes. But I was pleased that I managed.

I am home now and exhausted. I hope I will sleep tonight although the pain might stop me sleeping. I am in a lot of pain tonight. I suppose that it is payback for a couple of days of trying to be a bit more independent.

Tomorrow I am going to a shop to see what is available to help me go out. I do not want to have to rely on a scooter, but at the same time I am fed up with having to use a car to go out. The town is about a mile and it would be nice to be able to go out and get fresh air instead of having to drive. Also I know that there are times when I do not do something, not because I don’t want to, but because I am hurting too much.

 

Facing Facts

Yesterday I went to a local shopping centre. It is what Americans call a mall as the shops are all undercover. It is a while since I was last there and I assumed that I could sit and have a coffee whilst the kids went off a shopped. But of course our daughter needed someone to help her. She was able to chose what she wanted and to try it on, but just did not want to shop alone.

Trouble is that meant I would have to go around one shop with her and stand and wait whilst she tried on clothes. How long does it take to try on a pair of jeans and a shirt?

We got that and got some underwear and went to pay. That was when she told me she needed a pair of shoes and there were none in that shop that she liked. I thought we had sorted out that she already had some suitable shoes.

I went to a shop to look for something for me as I have two weddings to go to. One tomorrow and one the Saturday after, so in the space of a week and a day I need to wear something at both weddings. Anyone who knows me would know that my wardrobe consists of jeans and tops. I am a jeans and t-shirt woman. I have always said that if I were to marry again it would be jeans and t-shirt for me. Guests could wear what they wanted including the minister. I would want a church blessing. But for me comfort in clothes is important, and I do not feel right in a skirt.

I was so tired by the time I got to the shop I wanted to look in. Everything seemed so expensive and I just could not get enough energy to try anything on so I went to get a coffee. At the refreshments area I realised that I had a bottle of drink in the car so why not go and sit there? After all it was outside, so plenty of fresh air, and I could lay the seat back.

That was when my mobile rang. Daughter still wanted shoes. We went a couple of shops, but they were either not the right style or way out of our budget. Even in the sale they were £60!

We found a pair of sandals that ‘would do’ and I went to sit down in the car whilst she paid. I felt bad leaving her to queue up and pay as I know she does not like to do that. Then she was going to have to go to another floor for the exit. Then find the car in the massive car park. So I was really relieved when I found my eldest son in his wheelchair at the top of the escalator. He sat and waited for her. Eventually all the kids were back in the car.

We had intended to go to Ikea to get some new plates. We really need new ones as our plates and bowls are getting chipped and look old now. But I was in so much pain and exhausted that my eldest drove us straight home.

He made comment about half way home. I had not said anything and he thought I was asleep. I am the worlds worst for back seat driving and am usually making comments about how close he is to other cars. I know that my spacial awareness has changed with APS. It is still safe to drive as I think everything is closer than it is. So apart from being more careful than before I am not about to scratch into other cars because I do not know how big my one is.

Last night three of the kids went out with a list and money I had given them and we all had fish and chips. Even thinking about what to cook was too difficult.

Our daughter asked today why we had fish and chips last night. She is used to it being a treat as when you are buying for six people it is not a cheap option. She was really concerned when I said it was because I was feeling so worn out from shopping.

It made me sad to realise how difficult ordinary things that I used to take for granted, have become. I was trying to work out what I could do to make things easier. Of course there is an option to borrow a wheelchair but of course I find that an unpleasant option. You see I know I can walk, albeit not far and not without pain. But to me wheelchairs are for those who cannot walk at all. Even though our son uses a wheelchair when we are out and he can walk, it still seems the wrong thing for me. Almost like I was making things up. The other option is to not go out. that again is not an option. I will not let this trap me.

Today I am going to our local town to try and get something to wear at the weddings. If I don’t get something today I will not be attending the wedding tomorrow. The difference is that my husband is coming with me. I can hold his hand and he will carry bags for me and make it as easy for me as he can.

As for what to do next time. I just do not know. I have to go in a month to get our daughter new school uniform. I know I could send her with someone else. But who? Her dad is a typical man who does not like clothes shopping, and anyway most girls want a female with them. I could ask my mother, but then mum would feel responsible for what our daughter bought. She might worry that it was too short/reveling in other words wrong.

Also it is something that I want to do, mother daughter shopping can be fun. I do not know how I will solve this problem. But I will have to sort out

 

A good 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.

 

Computer went to the computer hospital for repair.

Two weeks off line, well almost two weeks. I thought I would be lost without my computer, but it was not as difficult as I anticipated.

I did miss my emails and ended up with about 200 after I had got rid of the spam. I am still working my way though these to catch up on news.

The company that took the computer were not very supportive, and they most certainly did not give me the same information when I rang. First time I contacted them was because our daughter had left a new game in the disc drive. They said that they would post it back to us. Then the man said that the workshop was quiet and it would only take a couple of days to mend the computer so I said not to bother. That was Monday. When I had not heard anything by Friday, I rang again to be told that they had not even looked at the computer yet!! I was annoyed, the man earlier in the week had led me to believe that it would be done and back in a few days.  This meant that my computer sat in their workshop for a week without even being looked at. Finally on Wednesday I got a phone call to say that the computer was done and could they deliver it on Thursday. I asked about what was done and the young woman said she did not know much about computers! She read what she could from the sheet and it seems that the company took a week and a half to use compressed air to blow the dust out of the box and then they reinstalled the OS (I assume that means operating system).

Thursday was our wedding anniversary, 26 years, and we were going out so I made sure that the boys were able to be around to take delivery of my computer. As it was we were still home when it arrived. We checked for the games disc and it was not there. I tried to ring them but could not get through, so I left my second son to try and talk to them. I was so pleased that he managed and they promised to post the disc on. It arrived on Friday.

It is so good to have it back. I can chat on-line with fellow APS and lupus people. It is a lifeline for those of us who are disabled and cannot do certain things.

We also had disruption of a new boiler last week. The plumber told us on Wednesday that he was able to start on Thursday. So we had to tidy up very quickly. He said it would take two days to take out old boiler, put new boiler in airing cupboard. Take out old tank as the new style boilers don’t need tanks. He also was to put individual thermostats on the radiators.

He did not allow for the walls being made of something really hard. His drill broke the first day. He borrowed one and that one broke as well, so he had to go out and spend £350 on a new drill. The hole for the vent took hours of drilling, don’t know what the walls are made of, but I assume it means that the house is solid.

He left us about 3 on Saturday saying that he was not sure what to do about the thermostats. The radiators are apparently old and he thinks that he may need to replace them. It is at times like this that I am glad we live in a rented home and so we do not have to pay for this sort of repair.

The plumber is due back today and we will have to ask him why the water pressure is so low when you try and run a bath. Hopefully it is something simple and we can press a button or turn a knob and it will work properly.

 

Logistics

The time has come for me to have to think about how I get around again. Four months ago I had to give in and start using a walking stick. Now that is not enough and I am not able to go out as often as I want to because it causes so much pain to walk. When the weather was cold it did not seem so bad being indoors, but as the sun starts to shine you want to go out. 

I asked my sons what they thought and what they would do if they were me. My eldest said that I could use his car, but what a waste of petrol to have to drive a mile to go to the shops. I do use his car when I go out, but with the lovely weather it would be nice to be more normal and less restricted as to where I can go.

They then came up with a wheelchair, or a mobility scooter. My eldest uses a wheelchair himself and said that he would not consider a scooter because he can wheel the chair himself and would see it as a step backwards for him. My worry about a wheelchair is that I have arthritis in my spine and I do not know if it would be any easier. 

Then they got funny and suggested a normal scooter, the sort that children use, and then people could pull or push me along on it. Then there were suggestions about roller skates and the like.

It is a big decision to make. I do not think that I am disabled enough to warrent a scooter, and even if I were they are so expensive, we are talking thousand or two rather than hundreds of pounds. Also I don’t really want to use one, as I have not accepted mentally that I need to use something.  I have had people come up to me and point at my stick and say things like what is that for? I always want to give a smart answer like it helps you get to the front of a queue, or looking at it in surprise and saying how did that get there. But of course I just say that I have arthritis. I do not go into the lupus or APS or the fibromyalgia or the chronic fatigue, because it is not anyone else’s business and anyway I do not want to talk about my health all the time.

So what does someone do when they can walk but it causes so much pain and exhaustion? Does this mean that I am stuck at home or is there a way to manage to get out?

If so I had better get a garden lounger so that I can sit in our little patio garden and get some vit D.

 

INR levels

I am supposed to have my INR level checked regularly but because of the weather it was not done in February. INR measures how sticky the blood is, the higher the number the less sticky the blood. The specialist set my level at 2-3 which is normal for people with APS to start with. However many end up with 3-4 as their range.

I was not feeling very good about 3 weeks ago and also splinter haemorrhages had appeared under my finger nails. These look like splinters and are blood clots in the capillaries. My gp eventually agreed to me having a blood test done to check my INR. This took nearly a week for me to get my results and was the start of the problems I have had.

My INR was 2.7 which is within the range set by the specialist. But I wanted the range to be higher as I was feeling a lot of my symptoms coming back. The gp surgery gave me a message that I needed to get the anti coagulation clinic to change the range. I rang them, not expecting much as they thought that I needed to get my gp to prescribe antibiotics to sort out the splinter haemorrhages. They said they could not do anything but that I needed to go to my specialist. I rang and spoke to his secretary and she said she would talk to him. Almost two weeks later I had not heard back from my specialist so I rang and left an answer phone message.

A couple of days later I was due at the anticoagulation clinic so I rang the specialist’s secretary again. She then told me that I needed to get my gp to write as she deals with gp letters much faster than patients requests.

I made an appointment to see my gp on Monday (in two days) but today my record book came back in the post. The anticoagulation clinic takes your book when they do venous bloods and then post it back when they have your INR results. I was shocked to see that whilst I have been trying to arrange for my level to be raised my INR has gone down to 1.9. According to what my gp told me recently 2 is normal for people not taking warfarin. But what really shocked me is that the clinic has said to stay on 5 mg of warfarin and they will see me in 8 weeks. Now I am not a trained doctor but would logic not say that if you have gone below your set range that you need to have your med dose raised? Also would logic not say that for someone who’s INR has been dropping and is now below the range set 8 weeks is too long to leave until the next appointment?

I am now wondering if I should ask to change clinics because I do not feel safe with the one I have been attending.

 

Going from pillar to post

Some days you cannot help but wonder what life is all about. I do not want to sound maudlin nor full of self pity neither do I want anyone to assume I am depressed. I am just fed up with the system that seems to put obstacles in our way. As those who read my blog realise, it has been an eventful journey for me to claim disability benefit. It has been so difficult that I have considered giving up. The 23rd of December 08 saw me in floods of tears when I got a letter saying that I was being turned down for the third time. But being a stubborn sort of person I decided that I would not give up and that I would take matters further. So after two emails to my MP he is now investigating if he can do to help me with my claim. I have this last week received a letter from DWP telling me that they now accept that I cannot manage stairs without help nor can I cook a meal for myself. So they awarded me low rate care. Nothing though for mobility which when you consider that I cannot walk up and down stairs safely on my own because of my joints and the pain I am in, also the reason I cannot cook is because I cannot bend and my legs give way so that I am considered to be unsafe carrying hot pans. So if it is my legs and back that stop me being able to do some things why is it not accepted that they also stop me walking? Today I got a new problem. I was up at 3:30am due to the amount of pain I was in. It took me 10 minutes just to get out of bed as every movement sent pain searing through my body. Once downstairs with a cup of cold water, and the TV on I waited for the rest of the family to wake up. I have not felt well for a few days and my memory is messed up. Also I knew that something was not right as I was typing in anagrams again!!! Last Wednesday I tried to find out why I had splinter haemorrhages. There were about 5 and on both hands. The specialist always looks for them when I go to London and he had told me it was a sign of clotting. I have not had any since I was on warfarin, but last week they appeared under my finger nails on both hands. I tried to ring the clinic but all I got was an answer phone and a message saying that they could not guarantee to return the call for at least 24 hours. So I rang the anti-coagulation clinic that I attend. I was worried because I have not had my INR (the test they do to see how sticky the blood is) for 6 weeks due to my appointment being cancelled because of the weather. They did not know what I was talking about. Splinter haemorrhages are caused by clots in the capillaries and yet a sister at the anti-coag clinic actually suggested that maybe I should go to my gp and ask for antibiotics! I then tried ringing my gp with the hope that they would be able to sort things out for me. I had to wait two days for an appointment and then was told that I would have to go to the hospital for a blood test. I had an appointment at one hospital and asked if I could go there instead. It is 10 miles in the opposite direction to the one that I have to go to for anti coag clinic. I was told that it would take longer to get the results but of course I could not manage to go to both hospitals on the same day. The lady who took blood did what they all do and ended up trying in both arms and twisting and pushing the needle in and out. She assured us that the result would be with our gp on Friday afternoon. We had been told by the gp that the results would not be there on Friday and so we would have to wait until Monday. Monday came, no results, Tuesday came again no results. So today (Wednesday) I rang the surgery to see if they had got my results. After all if my INR was too low then I was at a higher risk of a clot. The receptionist was really helpful and suggested that if I rang back in an hour she would actually ring the lab and see if she could get the results. I duly rang back at 5 to be told that my INR was 0.3 lower than it should be. I asked if I should take a bit more warfarin and was told to ring back in another hour after the gp had finished surgery and would be able to answer my question. Before the hour was up the receptionist rang back to say that as I am under the anti coag clinic then the gp could not change my warfarin dose. I did try to ring the clinic but there was no one there, so now I must wait until tomorrow. Such is the life of someone with a chronic condition. No one actually looks after you as a whole person. Each different clinic/doctor tells you to go and see someone else. All the while I am sitting here feeling awful. Lupus is flaring and I have mouth ulcers, joint pain so bad that my meds have not got rid of it. If I were a child I would have a paediatrician who would look after me as a whole person. Why is there not a similar thing for adults?

 

Hospital appointment

Yesterday I had to move the blog, due to a problem with where I had put it. So I spent time moving the posts and am now up to date.

Monday I went to London for a hospital appointment. We had a good journey up there, unlike normal I was very laid back about timing and it did look as if for the first time ever I was going to be late. But we got there on time. I must admit it irritates me that there is a notice at the clinic that says if you are more than 30 minutes late then they may not see you, however last time I was there I had to wait 2.5 hours to see the doctor.

This time was much quicker and I was in almost on time, give or take 10 mins.

Before seeing the doctor I had my blood pressure done as well as weight and urine sample. The weight we will not talk about, in my dreams I am slim, in real life it is a battle that I fight everday and one I lose every day.

My bp was wonderful 114/82 I cannot remember the last time it was that level. I assume that the clexane (blood thinner) is making a difference for that as well as other things.

We had a lovely chat with a couple who were also waiting. Next time I see someone wearing a cross with a red sash draped across it we will know that they are a deacon in the RC Church.

The doctor got straight to the point and told us that my kidney scan showed that the kidneys were all ok and there were no problems. Then you hear the but… the scan had shown an adnexal mass. Well what does that mean? To my daughter it would be when the whole school goes to the cathedral for assembly. But of course the word mass means so many things. The rest of the appointment went well. They are putting me on warfarin, suggested  I see a local rheumatologist for the arthritis and also thought that it would be a good idea for them to see one of our sons when they saw a list of his symptons!

After seeing the doctor I went for the usual blood test. You never get seen without haivng a blood test. On the way there we saw the couple who we had been chatting with before. I asked her how it went with the doctor as she was worried about some symptoms. She said that it was ok. Of course she was shocked when I told her what I had been told. But then she said something that really touched me. We are not Catholics, but when she said that she was intending to go to Westminster Cathedral after the appointment and that she would like to light a candle for me, I was moved.

The blood test was good this time. Usually I have a problem where they cannot find a vein and they prod and poke with the needle leaving me with a nasty bruise. This time she got the vein first time and the blood flowed just like it does when my husband has a blood test. It made me realise how long this problem with my blood has been going on.

WE came straight home after that. I was tired and I think that we were both a bit shocked. It seems like every time I go to the hospital they find something else.

I decided that I did not want to talk to anyone about the mass, I did not want to worry anyone and also I did not feel up to answering questions.

When we got back to the station, our eldest son met us I went home and my husband went shopping. Whilst at home alone I rang my brother and told him the news. Not sure why I decided that I would tell him, but it seemed the right thing to do.

Mum skyped me and so I told her stuff but kept the news about the mass to myself.

Later that evening I felt that it was wrong to keep my parents in the dark. So I rang dad and told him knowing that mum would not be at home yet. It felt right that dad should tell her and not me on the phone. Of course within a few minutes of her being home she was on the phone to me. She knew I was keeping something from her and was waiting to be told.

Yesterday I went to the GP to sort out the things that need to be organised. He gave me a form for a blood test Ca125 looking for cancer indicators in the blood. IT seems odd to be writing that word in relationship to me. He also is organising the scans, the blood thinning clinic appointment. The arthritis clinic we need to go back in a month because a new community hosptial has opened in our town and they have not said which specialist will be doing an arthritis clinic there. Our gp is good and he is willing to listen. After all GP’s don’t see many people with lupus or APS so he will ask me questions. In fact before we went to London he asked me to ask the specialist a question for him.

I had a lovely rest of the day. I visited someone I have not seen for years and we had a long chat. She is off work sick as she has chrons disease and also she has back trouble and fibromyalgia. So we were able to share experiences.

I was so tired when I got back, but I remembered that I needed to ring for a blood test. The answer phone message I got was rude. The clinic would be open again today was the polite version. whoever recorded it should ring it and listen to it.

 

Today I got through to book the blood test. It will be on Friday. Of course in the meantime I have looked the test up on the internet and have found that the result is not reliable in women of my age. It can often give false positives. So what I need is the scan. I keep telling myself that as the CAT scan was 2 months ago and they did not write to my GP and get things organised quicker then it must be nothing to worry about. In fact I am not worried, just want to get it sorted.

 

It costs more when you are sick

I did not go out today, yesterday took it out of me, so I have had a quiet day at home. Now that the weather is getting colder it presents a dilemma to many people with health problems.

Do you put the heating on and worry about paying for it, or do you leave the heating off and be cold? 

We are already paying £220 per a month for gas and electricity. Putting the heating on will mean that this bill gets worse. As it is we have problems paying this amount, and between needing the heating on and the fact that fuel is getting more expensive it is causing many people problems and it can only get worse. I am sure that this winter will see more people being sick because they cannot afford to heat the house, or we will see more people getting into problems with the gas and electricity companies. 

When you are sick you need the heating more than you would if you are able bodied. One cannot go out easily so many of us are stuck indoors a lot of the time. Also if you are not active you get colder, because you are not moving around to warm yourself up. 

My birthday is near to Christmas and this year I will probably end up with thermal clothing, not for wearing outdoors but for in the house. It is not something that most women of 45 imagine having for Christmas.

Added to the problems with the fuel bills food prices are rising by the week, sometimes it feels like it goes up daily. 

Because I am not able to get out everyday I have to rely on others shopping for me. They buy what is on the list whereas I would buy what is on special offer. Also for someone who is feeling bad, cooking is hard at best and some days impossible. It costs more to get veggies that are prepared. Also I am sure that hey have less vitamins in them as they have been peeled for hours, if not a day or two. But you have no choice sometimes. So another situation where it is more expensive for people with health problems to live day to day. But unless you can convince the DWP that you are telling the truth you do not get any extra money to help with the extra costs.

Even if you can get DLA does it really cover the cost of the extra expenses you have? I think not. 

Another problem with finance is that unless you know the system it is so difficult to get the help you need. I believe that everyone who is found to have health issues should be offered a visit from a benefits specialist. This person could then help you fill in all the appropriate forms. For example how many people know that you are able to get your travel expenses for hospital appointments? It is means tested but we have been spending money for trips to hospitals without knowing we could get it paid for us