Heat Waves and Thunder Storms!

Hello lovely people.

Wow! Summer has finally arrived bringing hot days and muggy nights. I hear people complaining of the heat and smile to myself because in about 4 months time the very same people will be complaining of the cold and wet and possibly the snow! I like the changing of the seasons and the different types of weather they bring. I love the summer and being able to wear nice summery dresses and clothes. I love the autumn which brings the cooler weather and the changing colours of the leaves on the trees. I love the winter and being able to snuggle up under warm fluffy duvets watching films and I love the spring which brings new colours and snippets of colour after the winter months when everything has died back.

July has brought the arrival of a new Royal Baby and we saw the Duke and Duchess of Cambridge with their bundle of joy. I've been waiting to hear from 2 sets of friends who have also been waiting for their little bundles to arrive. Baby Brawn was safely delivered by c section in the wee small hours of this morning. I am now waiting to hear that Baby Leaves has arrived safely. The circle of life can be a very cruel thing. A family who are neighbours have had a very trying time over the last few years and this year has been no different. They have celebrated the birth of 2 babies but have also had to mourn the loss of a much loved brother/uncle at the same time to cancer. I really hope that this lovely family is given a break now, they are lovely people and if they are reading this they know we are thinking of them and holding them close in our thoughts.

On the arthritis side of things, many people say the weather affects their pain levels and the warmer the weather the less pain they are in and the more mobility they have. I really wish this were true for me. Because I have bone on bone the pain is as it always is....bloody awful! My back pain has been aggravated by the recent thunderstorms so part of the rumour must be true.

I had a phone call from my boss yesterday advising me that HR have decided that I am now to be fully signed off and not working until I have seen my surgeon at the RNOH. Luckily for me the appointment is on 7th August and I have a weeks annual leave which has been agreed I can take from 12th August. The Workplace Adjustments team have been in contact about whether I am eligible under the Access to Work Scheme for a taxi to and from the office. This would be fantastic if this was agreed. Working from home is great but you do miss the social interaction with your team members and colleagues. Also you miss out on support. My boss informed me that the office the team is being moved to in September does not have disabled access. As the building was converted prior to a certain date it is at the landlords discretion whether to have disabled access installed. The building is not owned by the company like other buildings so unfortunately nothing can be done which leaves me in a bit of a pickle. IF they agree to a taxi to and from work I can use my crutches and struggle up the steps into the building but if they say no to the taxi I will need to use the Ferrari to get into London and then I wont be able to get into the building :-/  Anyway this is in the hands of the workplace adjustments team and hopefully they will be able to sort something out.

Didn't we have some spectacular thunder storms the other night?! I nearly fell out of bed with a huge clap of thunder which was overhead. Harry monster woke up scared which is understandable. The twins however slept right through the storm. Paul, Harry and Myself sat in the bedroom window watching the lightening show, which was amazing! and counting waiting for the thunder. Making the storm into a game relaxed Harry and he was no longer frightened. He eventually went back to sleep in his own bed!

Tomorrow night Paul and  are going out for dinner with some friends of ours and I can't wait! We are going to a lovely Chinese restaurant in Hornchurch and I have a nice new frock to wear and a beautiful pendant Paul has made for me!

Aren't I a lucky lady! Its a beautiful hand made gold heart pendant with peridots and white sapphires. My birth stone is the peridot and Pauls is sapphires. He has chosen white sapphires as they compliment the peridots. The piece is stunning and I am looking forward to wearing it! Paul has been working on his website for his jewellery and that will be going live soon! In previous posts I have put up his Facebook page for his jewellery so have a wander over and a look at some of the pieces he has made.

 

July also has brought the end of an era. George and Amelia have finished the nursery class at Hacton Primary School and are ready to go into the Reception Class. They finished their year at Nursery with a little concert which we went to watch as very proud parents!  Harry got an Achievement Award at school for his hard work and progress in Speech and language. All 3 of my kiddies got wonderful school reports making me one extremely proud mama!

 

Back to the Arthritis bit! My DLA claim was re-evaluated and I have been awarded the higher mobility rate! The lady who phoned to do an over the phone assessment was wonderful and very understanding and I have my GP to thank for the report he sent in about my challenges and condition. On the whole July has been a positive month and fingers crossed I will get some positive news from the workplace adjustment team soon. Please keep your fingers and toes crossed me for my appointment at the RNOH on 7th August! I will be sure to let you know how I get on.

 

Keep well and relatively pain free everyone and enjoy the warmer weather....it will soon be gone :-)

 

 

 

Randomness!

Its been over a week or so since I last sat down to blog. Much has happened and lots of things I want to tell you all about are running round in my head, so lets start!

As you all know I use the Ferrari to get out and about as it makes it a lot easier and the arthritis doesn't hit me with pain when I am enjoying family time or shopping. Have you ever noticed that the chip and pin machines are so high up?! I've always taken it for granted that I buy something, put card in machine and enter PIN. Some shops the machine is moveable so I'm able to enter the details. I went to Boots to hand in my prescription and the pharmacy part has an incredibly high counter. I was sat there for a good 10 minutes before the assistant noticed me. You may ask why I didn't speak up, but I wanted to prove a point and waited to me noticed. If I was stood up then they would have noticed me almost straight away. When I was attended to I wasn't able to sign my script as the pen is on a chain to prevent people from pinching them. The assistant eventually came out from behind the castle wall and handed me her pen to sign the script. In future I think I will be letting Paul pick up my prescriptions as the high street chemist is certainly not disability friendly.

While I am on my soap box about accessibility. Doctors surgeries!...mine has steps up into it and if you get an appointment with the GP upstairs there is no lift. In fairness the surgery is held in a converted 1930's house but still I would have thought there would be a ramp to get into the building. To be honest I wouldn't be able to get the Ferrari into the doctors room as it is a standard doorway. I have to be driven to the surgery and use my crutches to get in and out. I'm lucky because Paul is able to take me to my appointments and also take the children to theirs if they need them.

I think I mentioned in my previous post that my GP had signed me off for a further 8 weeks which takes me up to 14th August which is in the middle of my weeks annual leave. Boss man has been very understanding but had to consult HR who advised I should have an occupational health review with their 3rd party external OH consultants. Not a problem as far as I'm concerned as I have nothing to hide and I am keen to keep working. I am currently working from home which has helped a great deal with managing Mr OA. The Occupational Health Consultant phoned and did the review over the phone. It lasted just over the hour so I am glad that they phoned me ;-) The chap was very helpful, very understanding and I didn't feel as though I was being accused of anything or that they thought I was lying. I had already signed a medical disclosure document but they advised that they didn't need to request a report from my GP or Specialist. They have agreed that I should continue to work from home until I can have reconstructive surgery. At that point they will request a report from the surgeon and agree a phased return to work. I'm now waiting for the report to be written up and forwarded to my boss and wait for his and HR's decision. Fingers crossed they take the HR advice.

Moo is doing really well at her dance class, at the moment I haven't had chance to attend, Paul the wonderful Hubby takes her. Moo is now practicing for her first dance exam which is the Samba! Watch out Strictly, here comes Moo! :-) Harry Monster is still enjoying his football and played another tournament this weekend. All the boys at Tigers White Socks played very well. George has finally decided that he would like to try Karate so we have now found him a class!

Saturday afternoon was Family time and we took the kids to the cinema to see Despicable Me 2. Such fun! It was the first time we have taken then to the cinema and I wasn't sure if they would sit and watch the film all the way through or keep getting up to go to the toilet. To our amazement they watched the whole film. I recommend the film, I was chuckling all the way through!

Quite late on Saturday evening I received a friend request on good old Facebook. I had no idea who this person was and because the notification came through on my phone I decided to wait until the morning to check it out. Now FB has a messaging system and if someone is not on your friends list and they message you the message goes into your 'other' inbox. ...confusing I know! Well I noticed that this person had messaged me saying they had seen pictures on my Prom and was it the 28th June that I had the palominos booked for. Even more confusion on my part.....I'm 32 not 16 and when I was at school we didn't have a prom.....should I feel as though I am missing out?! LOL! The woman had not only sent a friend request but had subscribed to my FB profile and was now following me...Oh Dear God, I thought to my self, I've now got a FB stalker!

Well, as it turns out my lovely sister in law does horse drawn weddings and funerals and this family had booked her and the palominos for the 28th June, however one of the horses is ill, has gone lame and is unable  to work. They were offered a beautiful pair of Greys (White Horses) for the day but this was declined and they received a full refund. It wasn't a last minute decision as they were informed a good 2 weeks prior so a replacement could be arranged.  Natasha was working on her page and put up some pictures from a prom done last year. A good picture and a good bit of marketing. I naturally liked the picture and the stalker jumped to conclusions and assumed that it was my prom and that Natasha had cancelled their wedding to do the Prom. Then decided to be low and start sending private messages to people. The woman then posted comments on the page that could be taken as defamatory. These comments were naturally removed. She didn't respond to my reply to her message explaining that it definitely wasn't my prom but she is still following me!

Have a wander over to her page...she has two...a group and a page. Please select like and share! She does wonderful day experiences as well as proms and weddings! She did our wedding nearly 3 years ago and the horse and carriage certainly made me feel like a princess in a fairy tale! https://www.facebook.com/pages/AM-Carriages/131608063688265?fref=ts is the link to the Page A M Carriages, https://www.facebook.com/groups/104844142891286/ is the link to the group!

 This is my Dad and me on my wedding day!

I've been cake baking again! ...this time it was a mojito cake....very yummy and light, perfect for the summer! I've not got a picture available for the blog but there is a picture on my cake page Cake Anyone....have a look! https://www.facebook.com/pages/Cake-Anyone/497115613651635


Hope everyone is enjoying the summer sun, lets hope it hangs around for a while.

Until next time stay safe x

Me and the Ferrari go solo!

My 3 week signed not fit for work period came to an end and then was extended by my GP for a further 8 weeks :-/ How do I feel about this.....flat. Its not a joyous feeling being signed 'not fit for work'. It feels close to 'not fit for purpose'. I am currently still working from home as my employer is being supportive but I'm not sure how long that will last for. I am not physically capable of getting into Central London to get to my office. I end up in too much pain and I crumble. It's not good or professional to be seen as weak and a wreck.

I do feel better though for not having the travelling. I am able to manage the pain easier although if I do even go up to the school to pick the children up using my crutches (it is only literally round the corner) I am in agony.

I was given a band/bracelet to wear around my ankle by Matt at Streamz. It contains natural ores and compounds to help with pain and inflammation. It is a weighty piece to wear and I found it cold at first but you soon forget that it is there. Have I noticed a difference after a week?...I think so. I certainly don't ache as much but because I have severe OA the bone on bone pain is still there. I still wear it and my tens machine to compliment my pain medication. Streamz have a Facebook page...check them out! https://www.facebook.com/pages/You-StreamZ/408445515910843

My achievement for today.....I managed to get to the hospital and back on my own!! Me and the Ferrari wheels whoohoo!! I had to go for a blood test as I am bruising for no reason. Up early and cross the road to the bus stop as soon as I was ready. The bus driver was great, lowered the bus and the ramp but the pavement had pot holes in it and I got the wheel stuck so he helped push me onto the bus. I didn't have too long a wait for the vampires to take some blood before I headed back to the bus stop. This time no problems getting on the bus with the wheelchair. I was SO pleased with myself!!

The kids were super excited for Fathers Day. Presents were bought and wrapped, cards made....and we made a cake! We had such fun, there was chocolate, flour and icing sugar everywhere...it took rather a while to tidy up!! here is the creation...and Paul loved it!

 I mentioned earlier that I was bruising easily, I'm also getting dizzy/fainting spells. Doctor says it isn't my pain medication and my blood pressure was ok when he tested it. I'm hoping the blood test gives me some answers. It will be interesting to know if anyone else has symptoms like this.

Well, it's time for a cuppa and a ginger biscuit! Hope everyone is having a good day today.

Until next time xxxx

A Glimmer of Light.....

I am now half way through my being signed off from work and now working from home situation. It is suiting me much better. I am not jostled around on the tube and I am not in agony by the time I get to my desk to log in. I am able to manage my pain better because I don't have to travel into Central London. I have an appointment with my GP on 19th June as he has to assess my fitness to return to work. I am hoping he will sign me back but with provisions that I am able to work from home 2-3 days a week. Working from home is great but it does have it's drawbacks. I am extremely motivated and career minded with a strong work ethic so getting the job done is not a issue. I am however a sociable creature and I miss the interaction with my colleagues. At the moment work are being great and colleagues email me on a daily basis. Talking with people on support groups on Facebook I have realised how many people lose 'friends' because of their arthritis and immobility. It is shocking that friends would not stand by you. Some times all you want is a friend to call and say "put the kettle on, I'm coming round for a cuppa" It doesn't have to be about disability, pain and arthritis but about  friendship, having a natter about what is going on in the world as many people are not able to get out and about without help and the only trips out they have are to the doctors or hospital. Arthritis can be very lonely. I hope that people don't have to suffer that as well as the pain. I am aware that there are a number of my 'friends' who I no longer hear from and who don't return messages. I am a strong person and my attitude is that they aren't real friends so I am better off without them. It's sad that it takes something like this for me and other people to find out. On the other hand being on the support groups has given me support and I have made more friends than I have lost, these friends understand the daily struggle. So on the whole I am better off :-)

Friday last week I had my long awaited appointment with my consultant. As you are aware I have had a number of surgeries and appointments but always saw the registrar who is unable to make the ultimate decision. Mr Kumar was very good, there was no argument which threw me a bit. He took time to read through my notes, assess my x-rays, scans and surgery pictures. He agreed that something needed to be done and I was a candidate for knee replacements but because he only sees a maximum of 3 cases like mine a year he wasn't sure which replacement would be better...a partial replacement then have a full replacement later on down the line or go straight for the full knee replacement now. He said I would greatly benefit from replacement surgery but the joints that district hospitals get are aimed at older patients with a cut and dry case. SO, the excellent news is that he has referred me to the Royal National Orthopaedic Hospital at Stanmore which is a centre of excellence and a leading orthopaedic hospital worldwide. They have the facilities to custom make joints specifically for me and they have a special coating to mimic bone and prevent rejection which increases the lifespan of the replacement. I have to phone Mr Kumars secretary in a couple of weeks to confirm the referral has been sent off then phone the RNOH to confirm they have received it and check waiting times. Finally I feel there is a glimmer of light at the end of what has been a very long and dark tunnel.

Until next time, keep safe and pain free

Catherine xxx

The One Where I Get Some Wheels!

The OA has steadily been getting worse and my mobility declining. This is nothing new and is not surprising. My appointment with the orthopaedic surgeon is on 7th June which is only a week away. I guess I am holding out for some positive news from him on the decision to replace my knees but know that it isn't going to be as straight forward as "yes Mrs Manning, you're on the waiting list and will get a surgery date within the next 6 months" I am going to have to fight  my corner again, but I am prepared for that, bring it on!

The consultant sent a referral to Wheelchair Services and they issued me with a self propelled wheelchair. I have named this the Skoda model. It is heavy and drives like an overloaded shopping trolley round peak time Tesco! I searched the Internet and came across a lovely lightweight self propelled chair in red....the red ones go faster you know! ;-)

Here is me in my new Ferrari Wheels! Now the wheelchair is by no means me giving into the arthritis. Yes it sucks that arthritis has put me in this situation, but the wheelchair will give me more options for getting out and about with the family. Where I struggled, held everyone back and had to decline going to some places because of mobility issues and ended up in excruciating pain, I can now say Yes! The chair is lightweight and easy to manoeuvre. To be honest with you, me and the Ferrari Wheels are getting on quite well!  A little tip for those looking for a wheelchair, you don't have to pay VAT on it if you are disabled or suffer with mobility issues caused by diseases such as OA. There is a very simple form to fill out either online or in the store. The NHS can supply you with a wheelchair after an assessment or they can provide a voucher to the value of what they would have given you. You need to go to a supplier on their list if you chose the voucher option. If you want to go down the NHS route you will need to be referred to Wheelchair Services in your area by either your GP or Consultant at your hospital.

A couple of weeks ago it was my eldest son's 6th birthday and we went to a caravan park in Clacton with 10 other families for the weekend. It was a good weekend and the kids had a fantastic time playing and running about. Saturday was Party Day! It was also another little girls birthday so they had a joint pizza party! Harry wanted a Spiderman cake...so this is what I made for him!!

 Harry loved his cake! and I have to say it was a rather yummy vanilla sponge with butter cream and jam filling!

May has been a bit of a cake month. A friend as me to make her daughters 11th Birthday cake, the guide was pink and black colour scheme, vanilla sponge and 2 tiers! Here is what I created...and I know the little lady was pleased with the cake created for her birthday!

I was also asked to make a wedding cake for another friends daughter. I am completely humbled to be asked to make a wedding cake because it is such an important day in a couples life. My brief was White, Purple with a little pink. My friend had bought a cake topper so I didn't have to make one. Here is the wedding cake! (without the topper!)

Have a look at my facebook page full of my edible creations when you have a minute! Its called Cake Anyone? https://www.facebook.com/pages/Cake-Anyone/497115613651635

With it being half term and bank holiday all rolled into one we decided to take the kids to Diggerland in Kent for the day. I took the Ferrari Wheels and was pleasantly surprised and pleased that Diggerland is wheelchair accessible. I even managed to go on a couple of rides with the help of the staff and my husband. Diggerland has 4 sites around the UK and it is an excellent family day out. I would give it 4 Stars out of 5, definitely would recommend it.

Tuesday was NOT a good day for me. I managed to get to work in the Ferrari Wheels but it was raining and I got soaked to the skin. The OA was particularly bad and I was struggling. I cried on the PA's shoulders at work because it all got too much. Tara, the PA was lovely and told me that she understood how I feel as her partner has RA and that I shouldn't struggle and should go home to rest. I phone the hubby and he drove to Central London with the kids to pick me up from my office. Wednesday I had an emergency appointment with the GP who examined me and signed me off work for 3 weeks to allow the flare up to subside. Work has been fantastic and I am able to work from home which is great. It means I don't go down as sick, I don't lose any money and I don't have to travel to Central London. I was really worried about how work would react and I am sure that all people with OA or RA who are able to keep working worry about taking time off because of flare ups. It does help to have an understanding employer. At some point I may have to think about either reducing my hours or even giving up work if I am turned down for knee replacements.

I think that support groups are important and I am a member of a number of excellent ones. To be able to talk to people who understand exactly how I feel and what I am going through is great. I don't feel so alone because I know I can log on and chat to people. It also works the other way too, I am there to offer support, advice and help to other people in the group.  Sjorgrens Support Group is a friendly group https://www.facebook.com/groups/454589521294750/ with people who have a range of immune disorders and arthritis'. Osteoarthritis Sufferers and Rumatic Arthritis Sufferers group https://www.facebook.com/groups/318063891599818/ is also an excellent group, its based in the US but has people from all over the world. It is interesting to hear other peoples experiences. These 2 groups are on Facebook and are closed groups....just click on the links and request to join. I like closed groups because whatever is posted on them stay on them!

One thing that made me smile the other day was to see on the Arthritis Care page on Facebook https://www.facebook.com/ArthritisCareUK?fref=ts my Blog was awarded Blog of the Day!!! How wonderful!! The Arthritis Care page is another excellent page for the latest news on arthritis and treatments. Support Groups and info pages are Social Media and Networking at it's best!

With the warmer weather arriving, and hopefully staying for a while, I hope you are all having a good day and the pain is easing up.

Until next time..... x

Heads Shoulders Knees & Toes!

Hello everyone!

It's been about a month or so since my last post. Lots has happened in my world although I am still waiting for a decision on knee replacements which will hopefully be at my appointment on 7th June, please keep your fingers crossed for me!

I have good days and bad days.....today is a particularly bad day for pain and I have had to take the day off work. The manager I support is lovely and very understanding. If I had brought my laptop home last night I would have been able to work from home but as it is I didn't and today is a sick day. I'm snuggled in my pj's with a beautiful patchwork quilt made by the brilliantly talented Liz Draper letting the tramadol and co-codamol do their stuff.

I have recently had an x-ray of my right hip due to the increasing pain in it and my lower back. I struggle to lift my foot and sleeping at night is not happening due to discomfort. I have another week or so before my GP receives the results of the x-ray. He says he wants to check the stage the OA is at in my right hip. Over the past few weeks my tramadol has been increased to 100mg slow release tablets, then increased again to 150mg slow release tablets. I take one in the morning and one in the evening. I am also still taking up to 8 co-codamol 30/500mg. The GP tried me on Baclofen for muscle spasms. Well....I couldn't function on them. I like to be awake when I am awake if you know what I mean! :-) So the Baclofen has been stopped.....and I am glad to say I am more awake.

My wheelchair assessment form went missing somewhere in the hospital internal post. Cheryl, the secretary for Mr Kumar, my ortho surgeon was amazing. She chased it up and couldn't find it, she wrote another letter and saw the surgeon to sign and send the letter again. She phoned me 3 times in one day and twice the following day to make sure I was OK and to confirm that she had personally sent the letter. Cheryl went above and beyond and her genuine care really touched me. I will be sending a thank you card to her at the hospital as I feel it is important she is thanked and recognised for the help she gave me. I'm currently waiting for the wheelchair assessment, I've had the initial questionnaire and just need the appointment now. As much as I don't want to have to have a wheelchair the reality is that it will help me getting out and about with the family. When I am bad I will be able to get to work without having to struggle on my sticks and risk falling or being pushed over on the busy commute into central London.

On the employment front I am still working although some days are more of a struggle than others. My line manager has completed a DSE assessment and I had a workplace adjustment assessment. Work have given me a new lightweight keyboard, a fancy footstool, a raiser for my monitor, the desk has been raised as it was too low, and a fancy new chair to help with back and hip pain. The chair is being delivered and fitted tomorrow. I would recommend anyone who is working and has arthritis or any illness or challenge to get their employer to do a workplace adjustment assessment. It makes working a bit easier and more comfortable. My employer has been fantastic and the adjustments made to my working environment have helped a lot.

Enough of the miserable stuff! We have also had some nice times over the past few weeks. We are very lucky to have the use of beautiful Ravenswood in Tring. On bank holiday Monday we took the family and invited some of their school friends and their families. It was a warm, dry day and the sun was shining. A new fire pit was dug in a new less boggy location. People cooked sausages and burgers on the open fire and the kids had a wonderful time playing and exploring. The forest was filled with the sound of children's laughter and friends catching up.

Harry...my eldest! Loves helping collect fire wood!

The forest is stunning and changing all the time. The trees are just getting their green leaves and everything is fresh and green

Moo relaxing in her chair by the camp fire!

George with his lunch!!

The perfect place to play Frisbee!

Me in the middle front row with our friends. I couldn't get through some days without the support of my family and these people! They always make me smile and they have beautiful families.

Friends xxxxx
Being in the woodland poses challenges too. The ground was dry and firm under foot which was helpful. I didn't do anything!  Paul and our friends did the fire and set up. we took tables and chairs and I was helped in and out of the camping chairs! I was SO nice to be able to relax in beautiful surroundings with friends. A couple of our friends camped over night the night before and we arrived early so we could catch up before everyone arrived. I don't have a picture of them but the memorable part of the day was Paul and Roger cutting down a dead tree...it took a while and Penny supervised the men with their saws and axes!!

Its our Harry Monsters 6th Birthday on 19th May. I couldn't tell you where the last 6 years have gone but my little fella is growing up! He had a small party with 3 friends on Saturday. They went bowling then on to Pizza Hut for dinner. He had a great time. It was good to see the boys having a fun time. Paul was great too helping them with the bowling balls and me and the other mums sat on the side lines cheering them on. Next week we are going to a caravan with the friends in the picture and their families. We are there over Harry's birthday and another little girl will be celebrating her birthday too so we are having a joint birthday party for them both on the Saturday. If the weather is good then it might be BBQ time! I'm hoping my pain eases off on Friday as I have a days holiday and I am going to be making Harry's birthday cake.....he wants a Spider Man cake! Watch this space for pictures!! LOL!

My lovely hubby makes gorgeous bespoke handmade jewellery. He has been a talented gold and silversmith for over 20 years. We were contacted by an old work colleague who is setting up a bridal business wanting to borrow pieces for a photo shoot. It was agreed that she could have the ivy leaf collection which Paul made with love for me on our wedding day and she would be in touch with the details of the shoot. We waited and didn't hear from her but later found out she had already had the photo shoot without letting us know she no longer wanted the pieces of jewellery. Paul wasn't impressed as he prides himself in his work and common courtesy is to let people know one way or another. Anyhooo Paul has made some beautiful pieces. There are more pictures to go up onto his Facebook page of a sapphire and diamond eternity ring set in 18ct gold, it's stunning!  Please have a wander over to his page PMR Creations and have a look through the photos of his work. We do need to update the page. Please click like on his page!  https://www.facebook.com/pages/PMR-Creations/116260918440896

Thank you for taking the time to read this longer than normal edition of my blog. I hope those of you who are battling with any form of arthritis are having a good day and not letting it beat you.

Until next time, keep safe and keep well xxxx

 

 

 

 

 

The Day They Say Maybe......

Just over 6 weeks post op from my latest arthroscopy and I had a follow up appointment with the consultant. Well I thought I was going to see the consultant but I was sent an appointment at the polyclinic where I saw a very young looking registrar.

The Registrar read through my notes explaining that the main stage 3 arthritis is on my femur in both knees. There are areas of the knee which are stage 1 and stage 2 but predominantly it is stage 3 on the femur and patella. I was surprised to be told I had also received a steroid injection both knees while in surgery. The reason I was surprised is I have felt worse since the surgery and surely with a steroid injection I would have been feeling some sort of benefit.

Myself and my husband put across our concerns and explained how OA was impacting our lives. It's not just my life that it has affected it is also affecting my husbands life and that of our 3 children. I am pleased to say that the young registrar sat and listened to us, which is something that hasn't really happened before. Experience of the hospital is that we are fobbed off, spoken over and dismissed because I don't fit into the neat little boxes or text book definition that they go by.

The out come of our longer than average appointment is that the registrar is unable to make the decision to replace my knees. He admits that it is what I need and if I was older than it wouldn't be an issue and I would be put on the waiting list to have a bilateral total knee replacement. The rather young registrar (I must be getting old!!!) dictated a letter while we were sitting there explaining the situation and that we need to be seen by consultant himself at the next available clinic as it would have to be the consultant who will have to make the decision whether to replace my knees or not. If he says no, then he will refer me to a different hospital and consultant for a second opinion. The registrar explained that he may well be able to recommend a surgeon that might perform the surgery. If we got for a second opinion I am hoping to go to The Royal Orthopaedic Hospital at Stanmore, or UCL, or The Royal London.

Please don't think I am going into this blindly. I am very much aware that replacement joints have a lifespan of 10-15 years and the revision surgery can be more complicated. My mother in law has had her knee replacement for 15 years and it is still going strong with no problems. My father in law had a hip replaced for 22 years before he needed revision surgery. I need my life now, so I can enjoy my kids.Go out as a family. Be able to hold my kids hands while they still want to hold hands and hold my hubby's hand when we go out. At the moment I can't do that because I walk with crutches.

The baby faced registrar has referred me for a wheelchair assessment as getting out and about outdoors is getting increasingly difficult. I think there is a waiting list of several weeks so I will keep you posted on progress as I find out myself.

This week has seen me do a full week in my new job. Meet the team and get stuck in with my new role in Risk. It's great! The team have made me feel very welcome. The all know about my arthritis and are so helpful. I had a DSE assessment for my work station. I work on a laptop and my new boss got me a monitor and keyboard to plug in which helps with posture as the screen is adjustable in height. I am having a workplace adjustment assessment on Tuesday to check my chair and desk.

Travelling into London has been a bit of a mixed bag and I am relying heavily on painkillers to get me through the journey.

Saturday! Paul has been out with his friends today for a bit of R&R. Harry Monster had a birthday party in Romford at the bowling alley so it was me who had to get Harry and the twins ready and into town. I woke up feeling positive that I could do this....any mother should be able to do this. One the whole and all things considering it didn't go too badly but I did struggle. Unable to walk at the pace the kids were walking at we only just managed to get there on time. I was getting increasingly frustrated with myself as the morning went on which the kids unfortunately picked up on. While Harry was at his party myself and the twins get a table in McDonald's and they had a happy meal. Not the greatest culinary delight but a treat for them nonetheless.

I'd managed to put a load of washing in the machine. I thought I would be able to get it on line to dry with it being a glorious day....I think the first this year! I am so lucky to have helpful children to assist me unloading, sorting and folding as I wouldn't have managed it.

Being on my own today with the kids has made me realise just how much I rely on Paul. I feel guilty for the amount of help he needs to give me on a daily basis. We should be enjoying married and family life. I love him to the moon and back, just hope he realises. My worry is he will come to resent me over time.

This time last year I was excited about taking part in the London Marathon, the the London and Edinburgh Moonwalks. I can't believe how much things have changed. I can't walk a metre without sticks let along 26.2 miles. Here is a pick of my medals for my achievements last year!

Anyway, enough of being down! The kids want toad in the hole for dinner tonight. I'm going to ge them to make the Yorkshire pudding batter....it could be messy!!! :-)