The waiting game

Bones, joints and muscles
1

Hi Tess and Linda

How are you both?

Its been quite quiet here. No snow, but it has been cold.

I seem to be spending my whole life waiting for appts. and replies.

Well its 2 weeks since I wrote the letter to my rheumi and gp and I have not heard anything at all. I wonder what the process is for this sort of thing. Do you think my Gp is communicating with my rheumi before I get a reply. I'm a bit concerned that they will blame it on my mental state and that they don't take me seriously.

I am also waiting for my endo to write to my gp about my last appt. So that I can get my Vit D injection sorted, as I have run out of calcium tablets. I'm not sure how quickly the calcium will drop, but what I do know it has made me feel better which is a start.

Tess how is your Dad? Are you still feeling tired?

Linda how is your mum? Has Claire got any further with her noise problem. How are you feeling?

Take care.

Lizzy

2

Hi Lizzy,

Know what you mean :!: we seem to spend half our time waiting for apps and results. Do you have a PALS service at your hospital :?: They deal with any complaints and queries you have about anything to do with their services. I only know this cause Ann works at our hospital :!: They have to deal with your concerns impartially. I think your GP surgery should have policy for dealing with these things too. It might be something worth looking into. Hope you get your meds sorted out soon, they cannot withhold your treatment surely :?:

Well tomorrow is my last normal day (if there is such a thing :!: ) until next Weds. Start packing Mum`s bungalow on Fri and expect to be with her every day until we`ve cleaned it and handed in the keys on Tuesday. Monday is moving day, and while I think I`m quite organised I have this feeling that I must have forgotten something really important :!:

Tess, hope your Dad is doing ok and Clair is getting her noise problem sorted. How`s the tiredness :?: I can`t remember ever feeling so awful in the mornings, night time has always been my worst time of day. Have to wait until April for my hospital test results sad

Take care, Linda

3

Hi Lizzy & Linda

Good to hear from you both! Lizzy its all we seem to do is wait, wait wait lol. Really frustrating though especially for you as you have run out of calcium tabs. I do hope the dr and hospital get in touch with you soon. Do you take your thyroxine the same time as your calcuim? I have read somewhere that you shouldn't take the same time or they cancel each other out. Also it is the same with iron tabs with calcium and thyroxine.

Linda I bet you will be so much more relaxed when your mum is finally settled. You have got a busy time coming up and its no wonder you are worrying if you have forgotten something. You probably haven't but it doesn't stop you thinking so when you are so busy.

Well have had a busy two days. Had Sophie and Molly all day on Tuesday. Also had Molly yesterday as Sophie went to childminder for a day out on the train and bus into Peterborough. Molly was really good and we had a baking day in the afternoon. We made jumble mix that is melted chocolate and butter. Mixed with cherries, choc chip cookies and maltesers crushed. Also mini marshmallows and mix it all together and put in the fridge. So yummy! Molly also made a couple of little apple crumbles to take home as well. She was so good and did lots of drying up for me. :lol: We did sit and watch a disney film UP in the morning.

Well yes I am still feeling tired and really achy. I do expect to feel more tired with looking after the girls. I can be tired before they come but somehow seem to find the energy from somewhere to do things with them. Think I will give it about another month and if no improvement just go back to see gp. Got good news yesterday my cancer check results came back and all ok. Reviewed again in another year. They took just over a month to come back.

Dad had another fall early Wednesday morning and had ambu people out but was ok. They didn't take him through to hospital as his blood pressure and oxygen levels were ok. He hasn't been home yet a week and has two falls. Hoping to go and see him tomorrow with Claire. Claire hasn't heard anymore loud noise when she has been there. She has been back in touch with council to see what they can do.

Well having a lazy day today! Although I had got some jobs that need doing but will have to wait.

Take care both of you.

Tess

4

Hi Linda & Lizzy

Still feeling rubbish. Felt worse last couple of days. Not sure if to do with overactive thyroid but have been feeling breathless last few days. Also still really tired.

Got my dad back in hospital last night and was getting collicky pains in his stomach. Dr came out and decided to sent him through to the hospital as his tummy was swollen. Still waiting to hear more about how he is. I haven't gone to see him for a few days as with not feeling well wasn't sure whether could have a cold type bug. See how he goes. He dosen't want to have the bags anymore so going to ask the nurses to remove it for him.

Linda was it this weekend your mum was moving. If it is you must be busy. Have you had anymore snow. We had some more this morning covering the ground but now starting to thaw out a bit. Have you had snow Lizzy your way!

I hope you both are doing ok.

Tess x x

5

Hi Tess and Linda

I hope you are both Ok.

Yes we had snow sunday morning and I managed to get out and make 2 snowmen with the children. We called them Mr & Mrs Snow, but they had fallen over by lunch time due to thawing.

Tess perhaps a trip back to the docs it sounds like you should have your chest checked out. I'm sorry to hear your Dad is back in hospital, I hope they get to the bottom of it soon. Hows his legs have they healed yet?

No I don't take anything for my thyroid now just bloods every 3 months.

Well i think the meds have kicked in for the SLE and i think the calcium also helped as for health wise I feel much better. The only problem is mentaly I have taken a really big nose dive and I am really concerned, as I have never felt like this. I thought my panic attacks were bad enough, but this depression is awful, I don't understand why as my body feels so much better. A trip to the docs is needed, but I really want to wait till all the consultants have sent there letters which could be up to 2 more weeks.

Linda how are you doing? Hows the planing going? Is it helping? All the best for your mums move.

All back at school today so its been fairly quiet.

Ses hope all is well with you.

Take care

Lizzy

6

Hi Lizzy andTess,

Sorry your dad is in hospital again Tess, hope they get him sorted out soon.

Mum move today, was a bit tearful because she knows she will feel very lost and strange, I made labels for everything to try and help her remember where things are. Everyone there is very kind and friendly, and she went to activities and coffee this morning and this afternoon! The only day that there is nothing arranged for the residents is Saturday,

Well really tired mentally and physically so going to bed now and will chat again later in the week

Take care Linda

7

Hi Linda and Tess

How are you both?

Linda it sounds like your Mum has moved into a really nice home. What a relief for you.

Tess how is your Dad?

Its been really cold here.

Alan still hasn't managed to get a job, hes been home for 7 months now!!!

I'm still waiting for a reply from my letter!!!!!

Wishing you both a good week.

Take care.

Lizzy

8

Hi Lizzy and Tess,

I can`t believe its 7 months for your hubby to be out of work :!: Where does the time go :?:

Hope your Dad is doing ok, Tess, and you are coping with the awful fibro.

Mum is quite confused, but no more than I expected, it will take time for her to adjust to her new flat. Just one word describes how I feel, EXHAUSTED :!: So stiff can hardly get out of bed or off the chair, almost as bad as when I was first diagnosed. Going to try and have coffee with my friend this morning, just want to do something `normal` :!:

Take care, Linda

9

Hi Lizzy & Linda

Good to hear from you both! I can't believe it has been 7 months for Alan now. Where does the time go! I hope you get a reply to your letter soon.

Going to try and get appointment at drs this morning but can't ring until 8.30. I know my doctor is in today as rang and found out the other day.

See what he thinks is going on! Still feel not much better. Claire checked by BP and said it was a bit high. I have been having a lot of headaches and normally by BP is spot on as the dr says to me when he checks it.

Linda good that your mums move went ok. It will take her time to settle but must be a relief for you knowing she is safe and being looked after well.

Could you choose where your mum wanted to go? Also did you start the ball rolling by finding out who her social worker was? We have been told Dads social worker will be getting in touch. Going to try and get him in where your mum is as we know Geradine! Sounds like a lovely place as well will have to go and look around. Do they take the pension as Dad has state and private one for their keep? Been trying to all my brothers and sisters together so we can discuss what dad wants.

Went to see him on Tuesday and held my hand and told me he wanted to have full time nursing care. Think it is far too much for him now to be on his own. He has done well as he will be 87 in May. He was a lot brighter yesterday and even went down in a wheelchair to the hospital canteen for a cup of tea. Don't think he will be out today so possibly keep him in now until Monday. It is a stressful time to sort things out. Trying to get all my brothers and sisters together so we can talk about things. Tried twice now but with everybody doing things at different times during the week it is really hard. It is good to have someone else to talk and help with the arrangements. But so difficult as when there are more children lots of different views lol.

Well have a good weekend Lizzy and Linda!

Tess xx

10

Hi Tess,

Ring St Edmunds Court and ask if you can visit and put Dad`s name down. Knowing Geraldine should help! The flats are rented from Housing 21 and you can apply for housing benefit and council tax benefit as you would with any rental property. An assessment from social worker/occupational therapist would help. The application goes to panel which is held fortnightly on a Tuesday, and then its the waiting game again!

Catch up later, Linda

11

Good Morning Tess and Linda

You are early birds today.

Tess I hope you manage to see the doc this morning. I have thought that I may ring today to make an appt. for me next week, as I am fed up waiting.

Tess I hope you manage to sort your dad a place quickly and that you don't have to WAIT too long.

I'm off to have a broken tooth filled today and a scale & polish.

Linda did you manage to have your coffee with your friend?

Take care and wishing you both a good day.

Lizzy

12

Hi Tess and Lizzy,

Lizzy I was an early bird out of necessity this morning, was going to Mum`s and needed to check some things on line before I left:!: Hope the dentist went ok, not my favourite place sad Had a letter from my GP saying the neurology clinic wanted some more blood tests before my next clinic app. one of them was for something that is checked for Lupus, so they still seem to going along that line. Do you ever feel light headed and unsteady with the Lupus? Cause that was the main reason I was sent to neurology, following a nastier than usual fall.

Tess, hope you got sorted at the doc`s today, like Lizzy I need to get sorted as well, but been waiting till Mum got moved. Met Geraldine today and said we chatted on here, she said you have some very talented children :!: She is lovely isn`t she? Apparently she was stood behind Mum in the lounge when she was chatting to other residents and carers and Mum said \"If I ever meet the manager of this place I shall tell her that you all deserve a pay rise, you are all so kind!\" Sorry I only left a brief message this morning but was on my way to Mum`s, I think there are still one or two empty flats, but you would need to get in quick. On first impressions I would reccomend it to anybody.

Well been particularly light headed and wobbly this afternoon, so going to work on the asumption that I`ve done too much and see if resting helps, but need to see GP when blood results are back so will try and hang on till then.

Have a good weekend,

Linda

13

Hi Tess and Linda,

Well I managed to get through yesterday, acted like a complete idiot at the dentist. Never had a problem before in fact I don't even get worked up when I go.She started to drill out the old filling and I went into a panic attack, shaking all over and couldn't open my mouth properly. She had to freeze it 3 times and my mouth was still frozen at tea time from a 11.30am appt. Every time she froze it she typed into the computer on the third one she typed for ages think I might have a black mark. Anyway I was still shaking when I fell asleep last night.

Going to have a restful day today.

Tess how did it go at the doctors? Did your son get his place at Uni on the teaching course? How are your Grandchildren? It must be nice for you all when you get together with your brothers and sisters, not surprising you are all finding a time difficult to meet is . We don't have family gatherings very often.

Linda its hard when things in life take over. I'm so pleased to hear your mum is begining to settle in and of course with that sort of talk she will get lots of help and make some good friends.

My first Lupus symptoms were the, extreme tiredness, swelling of hands and feet either for a few hours or weeks on end, then morning stiffness, developed asthma at the age of 32 and them many little annoying problems, like urine infections, IBs. Treatment got rid of all these problems including the asthma.

Symtoms 3 months after coming off treatment, overactive thyroid, joint swelling, vertigo, dizziness, light headed, morning stiffness, IBs, acid reflux, lots of urine infections, terrible joint pain lasting from about an hour to 4 days, never the same joint. Extreme tiredness, muscle pain,lost 2 stone in 8 weeks, glands swelling up in neck, ear ache on and off,strange rashes, feeling like I've got a virus for a few hours and then completly dissappearing, carpel tunnel problems,haven't had a proper cold for years, anxiety/depression, tremmors, evening stiffness and really bad headaches. I also have very very dry eyes, dry mouth and vagina.A lot of these symptoms could be Sjogrens syndrome.Which is called mild lupus.

Everybodies symptoms are different, but the good thing is that it can be controlled, so there is no reason why you shouldn't live a good life and reach old age too. I have regular blood tests to check that it isn't attacking my internal organs.

Hope this info helps.

Take care of yourselves and have a good weekend.

Lizzy

14

Hi Lizzy & Linda

Sorry to hear about your panic attack at the Dentist Lizzy. What an horrible experience for you. :cry: Are you feeling ok now. Don't worry about having a black mark against your name it wasn't something you could control. I have got dentist appointment tomorrow morning at ten a six monthly check up. Like you always get nervous before going. Even though no the people well and have been going there for about 18 years.

Chris never got into Manchester Uni for his teaching course. He has now decided to take a year out. He is hoping to move into a house to rent in Manchester with two girls who were on the same course has him. They originally come from Ireland. They are all going to get jobs and Chris is hoping to get into a teaching assistant job if he can to gain the experience for to apply again next year. He graduates in July this year.

Linda I hope you managed to have a coffee with your friend the other day as it will be good for you. Pleased to hear your mum is doing well and it is a lovely place for her. Yes Geradine is lovely and has two boys of her own. Her youngest son is very good at Drama and hoping to go to Uni this coming September to study it.

Things are now on the move for Dad. The nurses came to talk to him about what he wanted to do on leaving the hospital. He told them he didn't want to go back to his flat and wanted full time care. He said he would like to go to St Edmunds Court. They said they would get things moving with his social worker. So hopefully things will go to plan as long as there are places available. My nieces husband Steve is a social worker and we were talking to him about it. He told us that if we does drag on to let him know. He has access to the database and can find out who his social worker is and hurry it along. Fingers crossed it all works well for him.

Like your mum Linda he has been taken off his tramadol and his speech is better. He is more alert and more mobile than he has been in months.

His leg ulcers are getting a lot better since being in hospital as well.

Have to go now and get myself in the right mood to go out and clean the van. Stewart has put the heater on in there for me so it is warm. We have booked up to go away from Fri until Mon at Mablethorpe.

Forgot to say about dr appointment. Saw doctor and told him about feeling more tired than normal and breathless. He listened to my chest and heart but both ok. He took my blood pressure and said it was a bit high. Normally it is 119/70 but when he took it this time it was 146/70.

I never have a problem where it will go up because of being there so was quite a shock. He wants to get to the bottom of the tiredness and has suggested I take 20mg ampytripline regular at night now to see if that will help. It hasn't made any difference for the last two nights lol and in fact I have felt worse. I have to go for some bloods for iron, thyroid and a fasting blood test for sugar. Can't get me in until Wed and have to go without food from 12pm Tues night until my appointment time of 11.45am. Not looking forward to not eating all that while.

:cry:

Have a good day both of you.

Tess

15

Hi Lizzy & Linda

Well dentist appointment went ok. Go back in six months for another check up.

Went to see my dad in hospital. He is doing ok but had to go for a cat scan today. Still don't know really whats going on. Will probably find out tommorow when he sees doctor. His stomach is still quite swollen with fluid.

Lizzy hope you are doing ok today! Has Alan heard anymore about any job applications yet.

Linda hope you are feeling better today after your busy time getting your mum sorted. Has Ann heard anymore about her move? Will seem really quiet for you when she moves out.

We have had a lovely spring like day with lots of sunshine. It really makes me feel a lot better. Got Sophie tomorrow all day. Be nice to spend time with her.

Got to go for blood tests on Wednesday dinner time.

Well take care.

Tess x x

16

Hi Linda & Lizzy

Hope you both ok. Went for my blood tests today. He is checking my kidneys, liver, thyroid and iron levels. Also checking my ECR rate. Should have results back by next Thursday when I have an appointment with the dr.

Went to the hospital today to see my Dad. His doctor wanted someone from the family to be there with him when he gave him his results. We were told that he has a growth on both his kidneys. One side they seem to think was ok and the other is larger and he seemed to think it could be cancer. He is going to be referred to a consultant at Edith Cavell and see what can be done. He is going to be transferred within the next few days.

Have only got one day left before we go away to load up the van. So will be busy busy busy tomorrow.

Hope your mum doing ok Linda! Lizzy and news on the job front for Alan.

Tess x x

17

Hi Tess and Linda

How are you both?

So are you off today or tomorrow Tess? How is your Dad? Did you have a good time with Sophie? I hope your blood tests went Ok. Are you still feeling very tired?

Linda how are you? I bet you are worn out after your hetic few months. It all catches up with you when you stop. Hows your Mum?

I now have appointments for some sort of electrode test on my arms to see what is causing the pins and needles in my hands and a 24 hour ECG the following week. I still have not had any reply from my Rheumi and no word from my GP so I still don't know whether he will just make me appt. with a new rheumi and when I will get my Vit D injection.

Alan and I went walking on Tuesday had a good time, but I am paying for it now. Alan also has another interview on Tuesday.

Wishing you a good break Tess and I hope its not too cold for you.

Linda wishing you a good weekend.

Take care Lizzy

18

Hi Lizzy & Linda

Thanks Lizzy looking forward to going away tomorrow. Will be a break from everything at the moment. My family are going to let me know how my dad is.

He is still waiting to be moved to another hospital who specialise in dealing with kidney problems.

Its about time your gp and rheum have got in touch. When do you have to go for your test for pins and needles. Where did you go walking on Tuesday. Its good to hear Alan got another interview and hope it all goes well for him.

Linda hope you are ok and getting some rest.

Will catch up with you both again on Monday when I am back.

Have a good weekend both of you.

Tess x x

19

Hi Tess and Lizzy,

Sorry to hear about your Dad, Tess, I hope he gets sorted out soon. A break will do you good, help re-charge your batteries! Take care and enjoy your weekend.

Yes, Lizzy the last few months have caught up with me, I don`t know how I feel at the moment. Felt so awful when I woke this morning, was going to go and see GP, but changed mind cause don`t know what else he can do till get test results back from hospital sad

You would think your GP could have at least acknowledged your letter, that`s only good manners! It`s awful that they have left things unfinished, you don`t know where you stand.

Well, off to Mum`s tomorrow (no surprise there then!) have to take her to her new health centre for a new patient check. Should be fun she doesn`t want to change doctors!

Well, good luck to Alan for his interview, and have a good weekend.

Linda

20

Hello Tess and Linda

How are you both?

Linda I know what you mean about not feeling well, I have come to the conclusion that really theres not a lot the doctors can do we are going to have to find ways round to manage. I have been in a lot of pain since last Tuesday and I am not really sure what the best approach is as it moves from one part to another durring the day. I thought I might try just using a constant paracetamol with no gaps and see if that helps.

Yesterday I spent the morning planting seeds and cooking scones with my youngest Laura hoping that would help. Today I have done housework and a slow walk round the local park. I'm tired but still in pain.

Tess how did your trip go? How is your Dad?

Linda did you have a good time with your Mum? When is your daughter moving? It must be soon.

Off to the hospital tomorrow lunchtime for test to see why I am getting pins and needles in my hands. Then I need to give some serious thought on the best approach to get this rheumi problem sorted. I really was hoping that the docs would start the ball rolling.

A week on Monday I go to the hospital to have a 24 hour heart moniter fitted. Thats to check that all is ok and to see if they can see a reason why I get heart palpitations on and off all day long.

The frogs have been busy in the pond. The lawn is looking quite dead. The tits are building a nest in the box we put up 2 years ago. Its great to watch them. Its still been really cold today.

Wishing you both a good week.

Lizzy